Sycamore Sisters Special Needs: Our Journey to Little Lauryn

Thursday, February 11, 2010 12:51 PM, CST

NEVER SAY NEVER... Just when we thought we were going through our last "potty-training phase"...going to be free of diapers...we've learned that is NOT the case! We are expecting #5!!!!!!!!!!!!!!!!!!!!!!!! Not planned. Total shocker. WE thought we were done (and, YES--we know how this happens!!! :) ). We've certainly been reminded of God's hand (his upper hand) in all of this. I am still pretty early...about 7 weeks, according to the early ultrasound. My due date is b/w Sept. 27th and October 1st...everything looks good...there is only ONE heartbeat (thank you, Lord)...I've got my usual, nasty "morning" (all day) sickness (which, ironically, "they" say is a "good" sign)... We certainly see the true blessing/miracle in this...we are staying positive...and trying to keep our sense of "humor"...but, FIVE KIDS?!? Really? Pretty overwhelmed, to say the least! As John says, we will have a good "balance" with me being from 4 kids and John from 6 kids...not sure that this explanation relieves any "stress" at all, but it's a good try! :) We're surrounded by wonderful family and friends...know we have plenty of support...lots of prayers going...and too many blessings to count... 2010 is proving to be an eventful year!

Our "little family"...with one more on the way....

Thursday, May 6, 2010 7:09 PM, CDT

IT'S A... nother Buechler GIRL! :) I really was almost certain it was a boy...but, was proven wrong (AGAIN!). :) It was exciting news hearing/seeing it was a girl...but things went a little downhill with the ultrasound. In a nutshell, the doctor has a few concerns based on some things she saw on the ultrasound...(the tech does it first, then the doctor scans herself, as well). First, it looks like there may be some calcification in/around the liver...this may be a couple things. It may be that there is some sort of infection...that I got an infection and it's being passed on to the baby. The way they test for this is to draw blood to test for antibodies...looking at if there is/was an infection...how long the infection has been there...how long ago I had it, etc. They then would see how much of the virus got to the baby (if positive)...how the baby is handling it, etc. This also may be an indication of a chromosomal abnormality...Down's Syndrome. In addition, she was a little concerned about a couple other "soft" (or "weak") markers for Down's Syndrome...somewhat shortened arm/leg bones--I don't know the ratio/length (this could also be just that the baby's bones will grow/are growing), what could be a small "cyst" around the liver (this could also be bowel), and a small nasal bridge (there is not a really defined profile/nose--there IS a nose...but looks a little "flat"---they were not able to get a really clear profile...and this could also be the way the baby was turned). The "strongest" marker--something to do with the tissue/fluid in the head/neck area...looked perfectly normal. The baby was very active, which is a positive sign...everything else looked fine...nothing in the heart, kidneys (which are also "stronger" markers for DS), etc. There are just a "few" things that are concerning...I got the blood test for the antibodies--those results should be back in a week or so...and I have to go for a follow up ultrasound on May 28^th. They will again take some measurements, look at the calcification, nasal bridge, etc. to see if anything has changed. It may be that I again have to go back in another 3 weeks. The only way for certain to tell if this baby has Down's Syndrome (if those markers continue to be concerning) is by amniocentesis …not sure if this is something we want to risk or not... Needless to say, it was an emotional ultrasound. John was so strong...and is focusing on all of the things that seemed "healthy/normal" about the ultrasound (heart looks healthy, kidneys are healthy/blood is flowing in/out, hands/feet look normal, the "strongest marker" is normal, the "Buechler nose" tends to be small/flat anyway!, etc.). Pregnancy hormones certainly didn't help my state of mind! :) This baby girl will be so loved and treasured no matter what...she is a true blessing to our family...The chances that she will be a "normal, healthy" baby are greater than the chances she won’t, but, to say I'm "anxious and worried" right now is probably an understatement. So, I need those prayers...for this baby girl...and for me (and John)--that we can focus on all the positives...and not consume ourselves with worry about something that "is what it is"/we cannot change. We are so blessed to have such incredible family and friends...and we will get through this no matter how things turn out. I just want to be able to enjoy the beautiful, healthy kids I have, and the wonder of pregnancy...as this WILL be our LAST!!!! I'll keep you all posted on anything that comes up... BTW--my ultrasound was at Maternal Fetal Medicine (high-resolution)--high risk pregnancies (for my age and for preterm labor)...there are three doctors in the group...today my doctor was Tony Dungee's sister (the "head" of the group)! To try to add some humor to the day, John thought/thinks I should say that a signed football from her brother might make me feel a whole lot better/at ease... :)

Thursday, May 13, 2010 8:48 PM, CDT

OB APPOINTMENT... I had an appointment with my OB today and things went pretty well. My bloodwork all came back and everything seems to be fine with that....which is more good than not. The viruses they were testing for were very serious ones that could be really harmful to a fetus. The only "down" side is that, had there been some sort of "infection", it might have explained the calcification in the liver. My OB had the full report from the ultrasound...the concerns are: 1) calcification in the liver (which may be nothing, may diminish/disappear), 2) shortened femur and humerous--one is in the 16th %ile and one in the 32nd %ile...which he said isn't horribly "low"...based on the "size" of our babies/kids (small--aside from Tyler! :) ), the baby just may be small, 3) small cyst either in the liver or the bowel (it wasn't clear on ultrasound which one)...this may be something more "serious" or something that just goes away on its own...he said cysts will often show up in an early ultrasound and not be there in later ones, 4) "flattened" profile...may be the case, but didn't have an especially good picture of the profile... He certainly did not dismiss the concern that there may be something, but wasn't completely negative. He said all the concerns are "non-specifics", as they can be signs of DS, but they can be a multitude of other things as well. Basically we just don't know...we may be able to tell something more on the 28th at the follow-up ultrasound (the hope would be that the calcification is gone/diminished, the cyst is gone, she has "grown into" her arms/legs--or that she is growing in a "normal" way, and that we can get a clear profile that would show a more distinct nose/nasal area--altho her profile looks a lot like Will's did--she's got the "Buechler nose!"...BUT, we may not know much, if anything, more on the 28th either. He said the disheartening thing is that we may not know a whole lot the entire pregnancy...it can very much be a waiting game. He was VERY supportive. We talked about amnio a little...with him completely understanding and agreeing with our position on it. He informed us about the possibility of doing an amnio much later, where if something did go wrong, the baby would be able to survive...My friend actually had an amnio the day before her scheduled c-section with her oldest...so that is something we will talk with the high-risk doctor about if necessary...but we will not be having an amnio anytime soon...not for the mere reason to know "for certain" or not. If something would happen to the baby because of this, I couldn't deal with it...He told us that he had a friend who had an amnio, she miscarried and the amnio results were normal...how devastating. He also has a brother who has a Down's child...there were some "signs" that ended up coming to truth...but, he (my OB) and his wife (who happens to be our pediatrician!) also had an abnormal ultrasound with one of their four and things were fine (which is the more common "story" I've heard). When I stated that the likelihood that this baby is perfectly healthy being greater than not, he completely agreed. He was truly sorry he couldn't give us more definitive answers and certainly wishes we didn't have to go through the worry and wait part of this...at the same time he was so encouraging to us about our positive attitudes and outlook. He let us know that, should this baby have Down Syndrome, he will do nothing different with labor/delivery. He said Down's babies/children do VERY well...so that is not a concern. It’s like a friend of mine said in an email response...do we really EVER know? All of this has really made me realize more what an absolute miracle a "perfect" baby is...it's so easy to take for granted that everything is going to be just fine... SOOO...while we don't really know anything more (other than the bloodwork results), the "report" is certainly not "worse"...we will just keep taking it a day at a time...staying positive (which actually hasn't been that difficult with all of the support, prayers, etc. we have had)...and keep those prayers going! I am feeling the baby move quite a bit...she is very active! So that is another healthy sign! :) I'll keep everyone posted...thank you all for everything!!!

Thursday, May 27, 2010 9:09 PM, CDT

LAST MINUTE PRAYERS... Hi, everyone! It's hard to believe it's already been three weeks, but my follow-up ultrasound is tomorrow (Friday) at 9:45 am. While I'm really not overly anxietal about it, I'm not overly excited about it, either...We're hoping it's not a long, drawn-out process (like the last one seemed)...that we can "cut to the chase" and see how things look, etc. We'd love some "last minute" prayers for a peaceful appointment...no matter what is seen/found. THANK YOU all for all of your encouragement, positive words, and support thus far... We'll let you know what we find out...

Friday, May 28, 2010 11:43 AM, CDT

RE: LAST MINUTE PRAYERS... Once again...the power of prayer amazes me!!! We've had a positive morning! More positive than we expected... 1) Growth is not an issue...she is growing great...now in the 44%ile 2) The cyst is gone! :) 3) We did not get a profile today, but Dr. Dungy (who ended up being there after all) felt like things looked okay with that, as well from what she could see from other views of the face 4) The only concern right now is calcification in the abdomen. There are now four spots (last time there were 2)...all below the diaphram...all measuring less than a cm...the two that were there before are both smaller than they were 3 weeks ago...at this time there is NO bowel obstruction, which Dr. Dungy was very happy about... Dr. Dungy can't really give the reason or significance of these calcifications...often they are signs of infection, but there is no sign of infection in this little girl...all of my bloodwork came back normal (NO infection)...there is no growth issue...she is very active. Another positive is the ones there prior are smaller...Dr. Dungy did say it may be that my "small frame" allows them to pick up more on the ultrasound...we just don't know...it is not really "normal" to see this type of/this much calcification in the abdomen--at the same time, she is not in "panic concern". These calcifications are still a weak marker for DS (actually all three trisomy abnormalities)...she doesn not see any signs of any of the "strong" markers for trisomy 13, trisomy 18, or trisomy 21 (Down Syndrome). She does feel it important to keep an eye on/watch these calcifications to watch their growth, check for bowel obstruction, etc.... SO, the "plan" is: 1) Follow-up ultrasound...on June 30th 2) We are not comfortable with doing an amnio at this time...because 40-50% of DS babies have heart issues, when they know for certain a baby is DS (thru amnio), they will refer them to get a cardiac echo done. The heart on the high-resolution ultrasound looks perfect...so that rules out 80% of any heart abnormalities. Dr. Dungy did say we could go ahead and do an echo just to be sure things are fully okay with the heart. That may give us a little more info...it is no guaranteee (either way), but, if we know there are no heart issues, it will help us be more comfortable in ensuring an uncomplicated delivery. If there was, for some reason, an issue, this would affect my delivery in that they may send me to Riley to deliver, etc. I will also have this on the 30th (A pediactric cardio doctor comes to their office once/week). 3) Cervical checks every three weeks...(fun! fun!). I have been having some contractions...they did a cervical US today and everything looks fantastic...but, with my history, I have to have these every 3 weeks. These things coupled with my weekly progesterone injections (and the nurse checking heartbeat, blood pressure, etc.) make us feel very secure in that we are doing all we can to ensure healthy baby girl! THANK YOU all so much for your prayers/support...and your continued prayers/support. We continue to feel extremely blessed in having such an incredible support group of family and friends surrounding us! We'll keep you posted! Jen

Monday, June 21, 2010 8:26 AM, CDT

PRAYERS FOR ANOTHER ULTRASOUND TOMORROW... Hi, everyone! It's me, again...asking for those continued prayers! We have a
couple doctor's appointments tomorrow...starting at 8:30 am with Dr. Dungy's
office (high risk doctor). We'll have another ultrasound to see if there have
been any changes/track the calcifications we keep seeing in her abdomen.
Hopefully there won't be any changes (other than maybe they've gone away!)--any more calcifications, them becoming abnormally larger, bowel blockage, etc.

I then see my regular OB after lunch.

I've been having some preterm labor...contractions and such. Had to go in last
week to get on the montior, etc. They said it's hard to pick up contractions
until a bit later (after 30 weeks)...but they did several "checks" and it
doesn't seem like they are "doing anything" right now, which is a plus. I
definitely have an "irritable uterus" and they offered to start me on some
medication to help with that. My regular OB doctor wasn't in that day, and
since I knew I'd be seeing him w/in the week, I decided to wait for now. They
also said it would "behoove me" to stay off my feet as much as possible...when someone figures out how I can do that with 4 kids, let me know! :)

The doctors at Dr. Dungy's office seem to be "stricter", so we'll see what they
say about medication and/or "bedrest"!

Thank you all for your support, encouragement and prayers! We'll let you know
what we find out!

Love,
Jen

* We're down to two names now...this little one should have a name soon! :)

Tuesday, June 29, 2010 8:10 PM, CDT

PRAYERS...ANOTHER ULTRAOUND TOMORROW... Hi, all! I have my next ultrasound tomorrow morning...they will do another high resolution ultrasound to check to see the status of the calcification in the abdomen...if it's still there...is there more/less...has it "grown"/"shrunk" in size, etc...specifically checking to see if there is any bowel obstruction (so far there hasn't been, which is a great thing)...last time they did a short 3D ultrasound, but I was a little early to see a good view/picture...hoping maybe they do that again and we get a picture or two! :) They will also do an echo ultrasound, to see if there is anything wrong with the heart. There is no indication that there is on the high resolution ultrasound (it has looked super, which rules out 80% of any complications), but we are doing this as a precaution/way to find out a little more as to whether there is a stronger/weaker concern of the baby having DS...a high percentage of DS babies have heart problems...if nothing shows on the echo, then there is more assurance (but no guarantee) that she does not have DS...if something does show that tells us the concern is higher...as well as prepares us for any changes/precautions we would have to take during delivery. Finally, I'll have a cervical length ultrasound to make sure any contractions I'm having (not an abundance so far, but they are there) are "doing anything"... SO...a big morning for us...we appreciate all prayers for another more positive ultrasound...and another look at our precious baby girl....:) We'll let you know how things go... Jen

Wednesday, June 30, 2010 2:02 PM, CDT

RE: PRAYERS...ANOTHER ULTRASOUND TOMORROW...We had another positive day! All those prayers just continue to provide us with strength, hope and peace!

* The echocardiogram went very well...everything looks great. There are always minor "problems/defects" that could be there, but not show up on u/s (in any pregnancy), but the pediatric cardiac doctor said that was typically unlikely...and wouldn't be anything that would affect delivery, etc.

* Everything on the high resolution u/s looked great, too...the calcifications are still there. There are no more of them...and they are contained in the abdominal area. They are small...and we still don't have an explanation for why they are there. Basically they could be "something" or they could be "nothing." While there is a loose connection between calcifications and chromosonal abnormalities (DS), there are no other markers (weak or strong) that indicate any chromosonal abnormalities. Kidneys, bladder and bowel look great. They want to continue to watch these calcifications to make sure they don't get abnormally larger in size (apparently it is not unusual/abnormal for them to grow a bit in correlation with the baby's growth)...they also want to watch to be sure calicifications do not appear anywhere else (brain, heart, etc.). I have ANOTHER follow-up u/s in 3 weeks (July 22nd). Her estimated weight today was 2 pounds, 1 ounce.

* My cervix is shortening...which will happen as the pregnancy goes along. The doctor was a little cautious (not overly concerned, but not extremely happy) as it has shortened a little more than she would like since the last check I had a month ago. Again, this could be perfectly fine, but with my history of preterm labor, she wants to stay on top of it. Have to get another cervical check in a week or two...and hope that my weekly progesterone shots will continue to "work" and keep me off bedrest (full, at least) for as long as possible! Please, please, please....

* They also did a non-stress test...just to be sure there wasn't anything going on with contractions (more than I/we thought)...everything was good...the baby did NOT like the monitor...kept moving ALL around and kicking it! I think by that time she just wanted to be left alone! And/or we have another cracker-jack on her way...:)

THANK YOU all, as always for your continued prayers, support and encouragement! We are so blessed! We'll continue to keep you updated!

:) Jen

Friday, July 30, 2010 8:24 AM, CDT

SAY A LITTLE PRAYER... More ultrasounds later this morning...along with non-stress test (NST) and appointments...if you could offer up a little prayer that things are looking, especially as far as this baby girls' growth/weight percentile, that would be wonderful! :) We'll let you know what we find out... Love, Jen

Saturday, July 31, 2010 12:04 PM, CDT
RE: SAY A LITTLE PRAYER... Quick update...

* Things went well at the high-risk doctor--my dopplar "levels" are still a little elevated, but better than last week...biophysical profile (movement, breathing, etc.) was perfect (8/8)

* Had NST at my OB...there was one "drop" in heartrate--didn't know if it was baby off monitor, etc., so to be cautious I was sent over to triage at Community North to do an extended monitor (2 hours). Everything with that (specifically heartrate/movement) was super...she is a MOVER!

*The monitor picked up contractions...now have medicine...and my discharge papers say "bedrest"...have to stay off my feet as much as possible.

* I'll be going every Monday and Thursday from now until delivery...Mondays will be NST (monitor), Thursdays will be ultrasounds (high risk doctor), NSTs, cervical length checks and appointments w/OB. They will look at her growth/weight/percentile on Thursday at the High Risk doctor (have to wait 2 weeks between).

you, thank you, thank you for all your continued prayers and support! We'll keep you posted on anything that transpires... :) Jen

Monday, August 2, 2010 8:25 AM, CDT

URGENT PRAYERS... Hello, everyone...after a weekend of contractions...getting more frequent/intense w/back labor (even tho I was pretty much off my feet ALL weekend)...we headed into the hospital at 3am this morning. A shot of turbutaline slowed down the contractions for a bit (they are picking back up again)...I am starting to dilate and am 70% effaced. There is concern about the baby having some decelerations in her heart rate...Looking at everything combined with this pregnancy, they admitted me to the hospital...somewhat indefinitely.

* They want to monitor the baby 24/7 for a time...watching the heart rate, movement and, of course, contractions. * They are monitoring the medicine to see what settles down contractions (hopefully)...may need a turbutaline pmp.

* They are going to do more preeclampsia bloodwork just to be sure...my blood pressure was way up this morning, but has gone down...otherwise, not really any signs of preeclampsia.

* My high risk doctor knows I am here/is involved, and will likely do more dopplar ultrasounds, biophysical profiles, etc. sooner than later (was supposed to have Thursday).

* They really don't know how long I will be here...it will depend on what happens/how things go. They are concerned right now that she will come earlier than they hope...if the decelerations continue...and/or my dopplar levels in placenta show continued elevation, they will have to deliver. If they get things settled down and are comfortable with my levels, I may get to go home (on strict bedrest). If not...I could be here until she comes... * We are really nervous/scared...I am trying to adjust to knowing I may not see the kids (at home) for awhile...but we are in great hands...and are blessed with so much support.

Please pray that LAURYN RENDEL BUECHLER hangs in there awhile longer...safely and in a healthy way... Will keep you posted...

Monday, August 2, 2010 6:25 PM, CDT

URGENT PRAYERS...UPDATE... Well, we've been on an up and down roller coaster today...had a lot of tests...biophysical profile (8/8 again!)...dopplar ultrasound...etc., etc. "Plans" have changed several times...the latest is:

* I don't have all the details on the ultrasounds (dopplar) yet, but there are again placenta concerns...My high risk doctor and my OB talked...The high risk doctor's feeling is that this baby may be telling us it is time to come out. She feels that we may be causing harm to the baby by stopping my contractions/labor.

* Apparently there is quite a bit of calcification in my placenta. This causes concern b/c this may be what is causing the "resistance" and what is causing the decelerations in heart rate and growth restrictions. The placenta "ages" throughout the pregnancy...the reason they don't let babies go past 40 weeks is because the placenta ages VERY quickly at that point. With calcifications already in my placenta (which essentially cause "blockage"), my placenta may be already "aging", wearing out early. The growth restrictions they have seen may be a result of this, making it a situation where they can care for the baby better out of the womb than inside it.

* My fetal fibernectin (no idea if I spelled this correctly)--which gives some information as to whether I will deliver in the next 2 weeks--came back negative, meaning I "shouldn't" deliver in the next 2 weeks. This is if nothing changes in terms of heart rate, contractions, etc. But they feel these are pretty accurate...

* SO...the plan now is: 1) They are stopping all turbutaline/meds to stop contractions/labor. 2) They will continue to watch heartrate (specifically decelerations) VERY closely. 3) They will monitor contractions to determine if they are pre-term contractions or pre-term labor (whether I continue to dilate, efface, etc.)

My OB said I could go weeks contracting with nothing "happening" (yes, there are medications they can give me for pain...)...if there are further problems with the heartrate, and/or if I am going into labor (and especially if/when the baby gets stressed from this/contractions), then they will deliver. The positives are that the biophysical profile was perfect, she is very active and the fetal fibro...test was negative. And that I am in the best care here...wonderful doctors, etc. I love my doctors and fully trust them...so important.

Someone from NICU came down and talked to us about how babies born at 31-32 weeks (I am 31 weeks, 3 days) do...they typically do very well, with main challenges being needing help with breathing and feedings/nutrition. Typically a baby born at this point spends 4-6 weeks in NICU (mainly because of learning how to feed/coordinate everything that needs to be done to get the right nutrition)... As of now, I will be here several days...thru Friday at least, I think...then they will determine how things are and if they feel comfortable with my levels and such to let me go home. My OB says I need to get some "TRUE" bedrest, then we'll see what happens... They will do another growth ultrasound to look at baby's growth in the next couple days... Lots to process/internalize...we can't thank you enough for all your phone calls, texts and emails! They are helping us keep our heads up, have faith and stay strong! We'll keep you posted...

Friday, August 6, 2010 3:04 PM, CDT

URGENT PRAYERS...UPDATE#2...Hi, everyone! I'm still here at Community North...not sure how long...it is still pretty much a "wait, watch and see" process...

* I have had biophysical profiles (bpp) and dopplars almost every day this week...and will continue every day through the weekend/early week. So far they have been great...bpp's have been great--she is VERY active, which is very reassuring...dopplars have continued to be elevated...not sure how all this relates, other than if dopplars continue to stay elevated, there is a chance/concern that this (placenta/resistance to flow of nutrients, oxygen, waste, etc.) may be the cause of the decels...

* They did the growth yesterday...she has gained weight and is now in the 13%ile. My OB said that "increase" really isn't too significant (not a huge jump, so they still consider her IURG--restricted growth/small)...BUT the fact that she did not go down in %ile is great...

* I'm still having contractions, but they are at intermittent times throughout the day...sometimes pretty significant, others mild, others not at all. The contractions don't seem to be doing anything at this point...With the fetal fibro...test being negative, IF I would deliver in the next weekish (it's been almost a week since the test was done), it will be because of decels and not natural labor...they will likely do another test next Monday to see what it says for the 2 weeks after that...

* I have continued to have decelerations all week...again...these are intermittent and vary in the "intensity."
    - They watch these closely...if they become repetitive, there will be a concern.
    - Up to this point she has "recovered" from decels very well...this is reassuring...if she has a decel and heartrate does not go up quickly or much at all, they will deliver at that time.
    - My OB is reassured b/c of the bpps that we can likely make it a little longer without delivery...the goal would be a few weeks.
    - He also said that sometimes babies this tiny will have decels, then as they get a little bigger the decels will decrease...there is that hope with Lauryn!
    - Basically, because there are elevated dopplars, because there are decels and they don't know for sure what could be causing these, as long as I'm having them...I'm in the hospital. Apparently, these could have been happening for awhile (or with other kids), but because they now know they are happening, they have to watch things. Things could get serious/very concerning very quickly.

* She had a pretty good night last night...and is having a decent day so far...with fewer decels than the past several days. Late afternoon/evenings seem to be a time of more contractions and more decels...so we'll see how things go later!

* My OB came in a bit ago and said that I'll be here for a bit...at the minimum through the weekend/until Monday. If things are stable through the weekend and she doesn't have many decels, there is a chance they might allow me to go home (on bedrest) and continue with the "original" plan of bi-weekly NSTs/weekly ultrasounds.

So there's a chance I would get to be home for the start of school for the kids...which is super! I'm not getting my hopes up super high, but it's okay to hope a little.

My OB has to leave for a few days and won't be back until Thursday...he really feels things will be okay and I won't deliver by then...I REALLY want him to deliver this one (he hasn't delivered any of ours since Tyler) so I'm hoping he is right about that!

The kids/John are hanging in there. They've really handled things very well. They have some rough times (like I do)...but have been trying to keep busy/distracted. They come up each evening to spend a little time. There's not a whole lot for them to do here, so they aren't always long visits. But at least I get to hug and kiss on them a bit...I miss them like crazy. But, I do know that this is the best place for me at the moment--I would be constantly worried about things--esp. decels (which I can't tell at all off the monitor)...hopefully if it's a "calm" weekend and I do get to go home that that anxiety will lessen so I can relax a bit at home. Both John's mom and my mom have been at the house--some together...some separately, which has been an EXTREME help.

We have been overwhelmed (in a wonderful way) with all of the support, prayers, etc. from everyone. We are so blessed! We wouldn't be making it through this without you all! THANK YOU!

I am 32 weeks today...so prayers for a little longer...the goal would be 4 weeks (well, doctors would say 5-6 weeks, but that--past 36 weeks--hasn't happened yet with any of my pregnancies)...with the hope that maybe it won't all be in the hospital!

Have a wonderful weekend...will send more soon!

Also--the ultrasounds have shown that little Lauryn has a head full of hair!!! Madelyn's hair has finally started growing at 2....we'll see who has more hair when Lauryn arrives...:)

Love,
Jen

Sunday, August 8, 2010 3:22 PM, CDT

STILL HANGING OUT...

Well...I'm not sure it it's been a "calm" weekend or not...I'm still having contractions and still some decels here and there...my bpps have been great...all 8/8...My OB is gone until Thursday...the on-call doctors just kind of keep saying, "We'll keep watching..."...

I have another bpp tomorrow morning, then apparently the on-call doctor will decide how to proceed from there.

On of my nurses did mention that they can send people home on monitors so they can continue to monitor...so that gave me a little hope that maybe I'll still get to go home!

We can't tell you how much we appreciate all of the help and support we are getting!!! We have meals coming, friends mowing our yard, people helping with the kids, my brothers (and sister-in law) keep popping in to keep me company--as well as loading me up with movies (I get to watch grown-up chick flicks--that's a perk!!! I can't remember when I've see a movie besides Alvin and the Chipmunks 2, Disney movies, etc...)...WE ARE SO BLESSED!

I'll update tomorrow, as we will know more. Hopefully it will be a good day and I'll get to go home...even if it's for a short time (as with these contractions, I feel like she may arrive in the next couple weeks...esp. since they aren't going to stop them)...:)

Love,
Jen

Monday, August 9, 2010 4:24 PM, CDT

DOESN'T LOOK TOO HOPEFUL...me getting to go home, that is.

She's still having those darn decels at times...a big one last night...

My BPP was great again today...baby looks great...active, etc. It's up to the physician (OB) on call today (My OB is out until Thursday) whether I need to continue having daily BPPs/ultrasounds, when the next one should be, etc.

The on-call doctor came in this morning (before my BPP) and said things look pretty good...had a few decels yesterday/last night...the baby looks great and happy, then will have those moments...She said we'll "just keep watching/monitoring"...I said, "And that would be better done in the hospital than at home...??? (hint, hint, hint!)". Her answer was, "Yes."

SOOOO...I'm still here...and seems I will be for a bit...unless those decels stop... (and contractions don't continue to increase)...

Today was a tough day...I didn't think I had my hopes up too much to go home, but obviously did...just been a little "down" today...I know the doctors are doing what is best/safest for the baby and me...but I want to be home with my family. And, I'M BORED!!!

The kids are still doing fairly well...Tyler actually WANTS me to stay here, as he says he'd be too "stressed out" with me at home...even if they sent me home with a monitor. "And, what if you have a decel? What do we do then?" :) He's being SO helpful at home...Will has his "down" moments, but, overall is doing well. I think night time is the most difficult. Ben and Maddie are plugging along...they are always so "busy", that they likely don't stop long enough to think about it...until bed. In some ways it will be easier (for the adults caring for them) when Will/Tyler start school on Thursday...altho Ben and Maddie may not know what to do without them!

SO...we are kind of at a stand-still, it seems. Will continue to keep you posted. THANK YOU all for your visits, your emails, phone calls, guestbook responses, etc., etc., etc. They keep me going...I seem to always get one just when I need a boost!

Love,
Jen

Tuesday, August 10, 2010 7:23 PM, CDT

BACK TO SCHOOL...I can't believe tonight is Back to School Night and Tyler and Will start on Thursday! I so wish I could be there! I know they'll do great...and having a routine (and actually something to do) will be a blessing for them. They are anxious to see all their friends again...Ben and Maddie may have a little adjustment to do!

I added a few photos of the kids this summer. I have a BUNCH of ultrasound pictures of Lauryn...if I can help Tyler scan them and email them to me (he's done a bunch of computer work for me this week!), I'll post them.

Everything is still pretty much the same...doctors still feel it's safer for me/Lauryn to be here than at home, as she's still having decels...and I'm having contractions a little more (not in a labor pattern yet, but more frequent and stronger...so we'll see what happens...If the "test" was correct, I should have another week (at least) before I would go into labor...

I will continue to have daily biophysical profiles (today was still great) as another way to keep on top of what's going on...

Love, Jen

Thursday, August 12, 2010 8:28 AM, CDT

FOR THE DURATION...Well, it's official. I'm here until delivery. My decels are picking up a bit...yesterdays bpp was good, but my dopplars were still elevated...today's bpp was good--with dopplars less elevated. Yesterday my high risk OB did discover that Lauryn's cord is shorter than normal...this may be causing some/all of the decels. My OB explained today that the shorter cord can cause some concern b/c the baby can more easily lay on it/press on it, etc...causing decrease in the flow of nutrients, blood, waste, etc. With this added finding--especially with the increase in decels a bit (which may slow down again, but we don't know)...my OB said I'm here until delivery. :( Of course the hope would be I would deliver later than sooner, but he can't really even give a "target" of what week we are trying to reach...he said we will just take it day by day. Today the baby looks really good (even with the decels)...

Will and Tyler started school today. Yesterday afternoon/evening was TOUGH...I can't believe/am so sad I couldn't be there with them for their first day. I'm a little better today (after lots of prayer)...John took them in and they did really well. Hopefully that will last through the day.

It's just getting through these little hurdles of "things I am missing"...and, of course, missing my kids and John like crazy. Ben is having the hardest time...he begs me to come home...and begs John to just stay home from work...during the day/when he's busy he's a little better...I just so hope he gets a little more used to it...who knows how long I'll be here... The kids (all of us) are so blessed to have so many people who love them/us--and they are certainly in good hands with Mum-Mum and Nanny (and, of course, John)...

I am trying to hang in there...got my first 30 minute wheelchair ride last night when the kids came up...it was nice to get out of the room (and take my monitors off for a bit)! This will be my 5th delivery at Community North and, until last night, I hadn't ever seen the cafeteria! :) I have a couple books to read (THANK YOU Stephi and Julie/Ann/Anne/Alison/Tami!!!) and try to watch some funny shows and movies...any suggestions on funny movies (can't really do drama, etc. right now...or I'll just sit and cry!), let me know!!!

John, the kids, Mum-Mum and Nanny are really enjoying and APPRECIATING the meals that have been coming. What a blessing!!! Thank you to all--to take time out of your own busy schedules to fix our family dinner/bring it over it so generous...It is truly a huge help to us...they've even brought some "samples" up to me, so I'm getting to enjoy the meals, too!

As always, thank you all for all of your support. You are the best support group of family and friends anyone could have!!!

Love,
Jen

Monitors....24/7

Sunday, August 15, 2010 10:16 AM, CDT

UPS and DOWNS...It's kind of been a roller coaster ride the last few days...

UPS--my daily biophysical profiles (bpps) have looked great each day...baby looks happy much of the time--is generally very "reactive" to "stress"--meaning she comes back from decels, etc. when I turn, get a little oxygen, what not...she is very active/moves a lot...I've enjoyed my 30 minute wheelchair rides...have had some great visits from family/friends...Will and Tyler had great first two days of school...

DOWNS--I've continued to have decels...they have increased in number each day (not by a lot, but a little more each day)...last night had a BIG decel with lots of nurses and doc in here, at one point close to just going to OR...but then she came back up and was happily on her way...my contractions have continued to increase in intensity and frequency...

The ups and downs of this are the hardest. I get selfish at times and feel like I just want something to happen...just go into full labor already or have decels occur enough to just deliver...I'm right on that borderline--33 weeks yesterday...it's a high liklihood that Lauryn would do VERY well...the further I go, the less time in NICU (likely)...But then I think about if that did happen and something would go wrong and I would regret my selfishness...

It's hard to know what to take the most seriously or not...I think, "here we go" when there's a major decel like last night...or when I'm contracting every 7-8 minutes for awhile...sometimes I can see a little concern on the nurses/doctors faces....other times it's just par for the course and we'll "just keep watching." That part is frustrating...I don't know what's a concern and what's not...what I should tell them about how I'm feeling (don't want to be whiny, but don't want to not tell them something important)....I start questioning if there doesn't seem to be such a major concern, then why do I have to stay here vs doing this at home?!?

Then a decel like last night happens...the doctor explained that they do not, after all, have monitors they can send home that monitor 24/7--at least how the hospital ones do...if I did have a decel like last night, 1) they may not know it and 2) if they did know it, they couldn't do all the things they try to do to get her to react (turning me side to side--or last night I was practically upside down!, giving me some oxygen, starting fluids...) and then there would be a delay in reaction with us having to drive to the hospital, get IVs, get ready, etc. which could be harmful...when I'm here, they can be ready to go immediately...have me down to OR and baby delivered within a very short time frame.

With my bpps being great each day, they really feel it's an issue of the shortened cord...there is not as much "give" when she moves, etc., which can cause decels. Decels will likely continue to increase as she grows and there is less room to move around/ to "get off" the cord...yesterday it looked like the cord was wrapped/draped around her shoulders, which is not the "best" spot...today they didn't notice that...
SO...I keep plugging away...just praying for guidance/a little clarity...PATIENCE...and peace. And of course good health for baby Lauryn/me...

I miss John and the kids terribly...and can't wait to be home to just relish in all their activity...I don't think I'll take that for granted again anytime soon (even the times when I'm about to lose my mind! :) )...they are doing fine...it's hardest for them to understand how we "don't know" exactly when I'll be able to come home or when baby Lauryn will arrive. We all would love a specific date!

My OB is on call today...then will, of course, be here each day next week (except Wed.)...so maybe he'll be able to shed more light on the "overall" picture (or maybe not)...

Until then, I'll keep you posted on anything big that transpires along the way...

AS ALWAYS, THANK YOU ALL FOR YOUR PRAYERS, SUPPORT, ETC! I love reading the guestbooks, your emails, etc. And love knowing there are so many doing extra things to help John and the kids...It's how I ultimately get through some long days!!!

Love,
Jen

Sunday, August 15, 2010 12:35 PM, CDT

COUNTING MY BLESSINGS... Just after sending out my latest update, I was reminded of how I need to count my blessings...I am not discounting that my family is going through a tough time right now...but the light at the end of the tunnel is getting closer each day.

I have some dear friends, Connie and her husband Brian, who are also going through a VERY tough time right now...their tunnel light is a distance away...this difficult period in their lives has been going on for awhile now, but they are getting ready to embark on the most difficult part of this journey very soon.

After months of pain, questions, tests, etc., Brian was diagnosed last March with a rare blood/bone marrow disorder, Myelodysplastic Syndrome. He has already received what seems like rounds and rounds of chemotherapy, blood transfusions, etc.

Brian will be receiving a bone marrow transplant in mid-September. He will be receiving very intensive chemotherapy in the week leading up to that...A true blessing from this is that Brian has a "perfect" bone marrow match from someone who he does not/will never know. It is the best "match" they could have hoped for--much like if it was his sibling.

Connie and Brian are two of the strongest people I've ever known. They have handled all of this with such dignity and grace...all the while raising their two young boys (who both graduated from EPC) and trying to keep some sense of normalcy in their lives amidst a world of unknowns with this disease...

They are an inspiration to me (and many others) as to what TRUE strength, patience and hope are.

If you could keep Brian and Connie--and their family--in your prayers, that would be wonderful! Brian has his own Caring Bridge site if you'd like to read his story/keep up to date on how he is doing... http://www.caringbridge.org/visit/brianterry/journal?jid=5951130

Love,
Jen

Tuesday, August 17, 2010 8:36 PM, CDT

WE HAVE A PLAN...Well, it's been a big evening. The last couple days have been somewhat uneventful...Lauryn's continued to have decels...a couple of them "bigger" ones (although nothing like the other night)...the "smaller" ones are becoming more repetitive...I've continued to have contractions...at times being consistent/stronger contractions...the decels are starting to "match up" with the contractions...but none of this is to be unexpected at this point.

I felt pretty crummy last evening/this morning...nausea/just didn't "feel right", but took some Zofran, had a good, long nap and started feeling better...

My bpp this morning was good...8/8...but my dopplars were elevated...she mentioned her cord was "near" her neck (but not around)...but that, overall, the baby looked great.

So...just when I thought things would just plug along like they have been (unless another big, big decel or I go into labor on my own)...my OB came in this evening with a plan...he had spoken with the high risk OB earlier and they have a plan we are going to implement...

* There is a concern that with my continued decels, I will have another one anytime (something they can't predict) that will cause me to go to OR for an emergency c-section. While they are certainly prepared for that/feel the baby would ultimately be okay, there are complications that can come with that...an emergency c-section just isn't something they like to do...

* Looking at the overall picture, and the fact that I will be 34 weeks on Friday, this is the plan (assuming Lauryn doesn't decide something else in the meantime...like to have another big, big decel...or repeated "bigger" ones or decides to go into full labor)...

--They want to see if Lauryn's lungs are fully developed. I had steroid shots around 29 weeks...they are giving me another round--one shot tonight and one tomorrow to continue to boost that lung development.

--The high risk OB would like to do an amnio on Friday morning...to pull some fluid to send off that can tell how developed/mature Lauryn's lungs are (apparently those results come back quickly...?)

--That #/the results from that will determine the next step...
    - if they feel her lungs are developed enough/are mature...they are going to induce me Friday night. My OB will be here for 24 hours Friday thru Saturday so he will be here...(Lauryn has been breech the last several days and today was traverse--sideways...if she doesn't turn head down, they will do a c-section rather than induce...if she is head down, they will induce and watch closely, making sure the contractions don't stress her)
    - if her lungs are not mature/they feel it's too much of a risk at that point, they will repeat the amnio within a week, hoping to continue with prior step
    - if they feel the maturity is "borderline", they will have to make a decision...is the risk of delivering her and her needing some extra help greater than the risk of her having a big decel/needing an emergency c-section...

SO...it looks like there's a good chance little Lauryn could arrive this Friday or Saturday! That is assuming she "behaves" until then...I'm really hoping she does okay until at least Thursday, as my OB is off on Wednesdays...I know it would be fine, but I really, really want him to deliver this one...for many more reasons than just to "say he did"...

While we are of course nervous (and a little freaked out about an amnio--never had one...but have had numerous people, including my mother who had two of them years ago, tell me it's not really that bad--I just won't be looking at the big needle I keep hearing about...John will have to be in another room or he may be on the stretcher...:) ), it's also exciting and becoming more and more "real" that she will arrive soon!!! And then there's the fact that the "light at the end of the tunnel" as far as me having to remain in the hospital is getting closer!

While I'm completely aware that there could be complications and/or that Lauryn may need some time/"help" in NICU to help her along...my instincts/gut tell me that she is going to be just fine...she has proven to be a stong, little fighter...small but mighty!!!

So...continue those prayers that things go as they are supposed to...that all of us can hang in there just awhile longer...that Lauryn continues to get stronger/more mature/grow...and that she continues to be the little spunky fighter she seems to be!

I will keep everyone posted...

As always...THANK YOU for EVERYTHING!!!!!

Love,
Jen

Thursday, August 19, 2010 5:09 PM, CDT

THE PLAN CONT'D...Had a bpp ultrasound as well as a growth ultrasound this morning. Bpp was the usual 8/8 :)...Lauryn weighs 4.6 pounds and is in the 13%ile...same percentile, but is gaining weight (and hasn't gone down in %ile)...so that is good. She is still breech, which affects delivery, of course.

The "plan" we have at this moment is:

1) Bpp ultrasound and Amnio to test for lung maturity tomorrow (Friday) at 9:30 am (send up those extra prayers for both of us!).

2) It will take a few hours to get those results back...we will know by Friday afternoon.

3) If they feel her lungs are mature enough, they will choose delivery. My OB and I talked about delivery options today:
* Because she is breech (and assuming she stays this way), my OB said the options are to try to turn her or C-Section.
* He is hesitant to turn the baby because of the shortened cord/decels. If they could turn her cephalic (head down), there could still be the risk of c-section (possibly emergency) if she were to get too stressed with the contractions and start to decel a lot...She already gets a little stressed with stronger contractions...
* After hearing that John/I are actually fine with the c-section option (actually at times I prefer it with my concern that she will get too stressed with labor), I think my OB was more comfortable just leaning/planning on C-Section.
* SO...unless for some reason she would turn herself in the next day (my gut tells me she won't), there really is no other option than c-section...even if she does turn...c-section may be the best option.
* This being the case, he said to plan on delivery/c-section on Saturday...likely morning.

4) If they do not feel her lungs are mature enough...it may be another week, when they will do the amnio again/see what happens.

We may have an exciting weekend ahead (Happy Birthday, Lauryn on August 21st!)! I get the impression the doctors feel it is likely she will be mature enough (no guarantee, tho!), especially with having two rounds of steroids to boost those lungs...

Keep those prayers coming! I will try to update tomorrow once we know the results/make final delivery plans, etc.

Love you all!!!

Jen

Friday, August 20, 2010 5:30 PM, CDT

WE ARE ON!!!!

LAURYN RENDEL BUECHLER to arrive on Saturday, August 21, 2010 via C-Section at 8:00 am!!!

* It took awhile longer than thought, but we got all the results back from the amnio...things look great! The doctors said it all looks reassuring...the numbers/ratios were wonderful and my OB feels going ahead with the scheduled c-section tomorrow is much safer than risking an emergency c-section with waiting...

* I am scheduled for 8:00 am tomorrow am...One of the things they look at with the amnio results is a number of cases of babies with the "same" results as mine...basically in almost 2000 babies with my same results--only 2 needed help with breathing...so the odds are good that she will do well in that respect (1 in 1000)! There may be other reasons (feeding, etc.) that she will need to go to NICU...it COULD also be that she will need some respiratory assistance, can't rule that out, but it looks very hopeful.

* She's had a little increase in decels today...with some "flatter" baselines (not much variability) at times than they like to see...but it may be a result of taking Ambien last night (to help me sleep) or just normal "side effects" of having an ambio...my contractions picked up a bit afterwards and she hasn't liked that. Hopefully things will settle down (pretty good now) and she will just "behave" until tomorrow morning!

All those prayers are working! What a wonderful thing to be able to experience the true power of prayer so much in my life! God is good and we are SO blessed!

It's all sinking in now, becoming a reality that tomorrow we will meet little Lauryn! Even being in the hospital, constantly listening to her heartbeat and "watching" her heartrate...it still has seemed almost surreal...this whole pregnancy pretty much has! Absorbing that we will have #5 has taken awhile...yet we are so excited and anxious to add this true miracle/blessing to our family. The kids are super excited...to meet their baby sister...and then, of course, to get to have me come home in a few days (probably Tuesday or Wednesday, assuming all things go well...)...

Thank you all for everything!!!!! We love you...we will update tomorrow as soon as we can...hopefully with LOTS of pictures!!!

Love,
Jen

Sunday, August 22, 2010 11:23 AM, CDT

HAPPY BIRTHDAY, LAURYN RENDEL BUECHLER! Lauryn was born via C-Section yesterday at 8:23 am. She weighed 4 pounds 11 ounces and is 16 inches long.

I am so sorry I haven't updated until now. We've had a very emotional last 26 hours...Once I had some pain medication and a little medicine to help me sleep last night...I fell asleep pretty much sitting up, writing my CaringBridge update!!!

Ready to meet Lauryn!

Things with the C-Section went well...one funny thing...they were playing an 80s station...all music I remember in late middle school/high school...Just before actual delivery, Everybody Wang Chung Tonight was playing...my OB leans over and says, "Isn't this your dream coming true...having your baby via c-section to Everybody Wang Chung Tonight?!"....That is one for the baby book!

I felt pretty good yesterday, but am pretty sore/slow going today. I didn't wake up until 9:00 am (last time that will happen forever, I have a feeling!), and the nurse came in to "free me" of all my tubes, etc. Getting to get out of bed myself, etc. is something I'm still getting used to! :) I have slowly phased back into a "normal" diet...have not had any nausea, etc. (knock on wood), had a light dinner last night and getting ready to eat a light brkfst now...so hopefully I'm through the woods as far as that (other than some possible nausea with different pain meds they started me on this morning)...

Lauryn went to NICU fairly immediately after being born. They looked her over, got some apgars...let me see her quickly and sent her up...She is a doll...has a head of dark hair! Her color was great...Her lungs were a little wet and they were having to work with her a little on breathing, but nothing abnormal for a preemie/c-sectioned baby...

Lauryn Rendel Buechler, 4 lbs, 11 oz

Then some tough emotions set in. The doctors (NICU doctor especially) have some strong "concerns" that Lauryn has Down Syndrome. There are several "signs"/things they are looking at...the NICU doctor is pretty confident that Lauryn has DS.

I have to say I knew when I saw her...When my doctor showed her to me, I saw this beautiful little girl...who I knew in my heart was my special little girl...because I just knew the concerns about Down's had come to truth...For so long, my "gut" has been telling me that she did not have it...over the last several days I have felt like I needed to open my heart/mind again to that possibility (God was preparing me). When I saw her just after birth...I KNEW...I could tell a bit from her beautiful facial features (eyes) and this amazingly strong feeling I had inside that "Yes, she was." After they cleaned her up a bit and brought her to me for a second (I have not been able to hold her) look--she was cleaned up a bit...it wasn't as "prominent", but I still knew it to be true. They took her up to NICU, finished up the C-Section and I was able to go back to my room.

Very soon after, Dr. Wagner (my OB) came in to let us know she was doing well, was on a SiPap machine, etc. He also said there were concerns about Down's. When I told him I had this strong feeling, he said when she came out, he did, too. Gosh, he is such an amazing man. He cried a little bit with me (he has a nephew who has DS--and knows ALL of the amazing blessings he has brought to so many people's lives, but also remembers the struggle his brother/sister-in-law went through to fully absorb this and know that it's going to be okay).

John and my mom went up to the NICU right after talking to Dr. Wagner to see her...they also got to talk with one of the Neonatology doctor, who was very helpful and informative...he does feel strongly that she has Down's. The other neonatology doctor at Community has a Down's child himself...he returns Monday and will be an especially helpful resource for us/provider of strength and complete understanding. They will be doing some bloodwork to confirm DS, but the lab is not open on the weekend...so Monday they will send it in and it will take a couple days for the results...however, we are not expecting anything different.

It does not appear that Lauryn has any health complications that can so often occur with Down's. Her heart looks to be wonderful...they do not hear a murmur or anything (remember she had an echo ultrasound and the Dr. at Riley was thrilled with it...no "big" issues...she had said that there are some less serious things that do not show up on ultrasound sometimes, but any of these could be more easily addressed). She is having bowel movements and urinating (took her the afternoon), so they are not concerned about blockage.

She is on a SiPAP machine...much like a CPAP...but the SiPAP can help initiate breaths...this can be done with her "own" oxygen (room air) or with oxygen assistance if needed. Last night around 7 pm, she started having a little trouble--more labored breathing and her oxidation levels were going down, with her having some trouble getting them back up. They had to give her some assistance with the SiPAP and were watching her closely. When we sent to say Good Night, the nurse said there was a chance she might have to intebate her (respirator)...at least a short time...there is a medicine they can give with that (can't remember the name) that can help her along, as well...they didn't know for sure...and were going to just watch her VERY closely and see how she did on her own awhile...getting thru that hump. Her lungs were still pretty wet...which could be a result of just being premature...or Down's could be contributing...they really still felt it was a LUNG issue...and not heart (or even heart contributing).

The nurse came down this morning to tell me Lauryn had a GREAT night! She did well and is now breathing room air and liking it (still on SiPAP)...She is a little fighter, I tell ya!

Before last evening (and maybe now again), the "tentative plan" was to try to take her off of SiPAP and see how she did on either CPAP (which only pushes her own air a bit, doesn't initiate breaths, etc.) or even just a little oxygen. I'm getting ready to go up there in a bit, so hopefully I will know more about that soon.

I have not been able to hold her yet...won't be able to hold her until she is completely off SiPAP at least. Possibly later today or maybe tomorrow. That has been HARD...but, at the same time, I am okay with it...she is so tiny, etc. and with tubes---it makes me nervous to attempt it--I don't want to stress her in ANY way...etc. I just want her to be so comfortable and able to enjoy/find comfort in Mommy snuggling her...

Right now she also has a tube coming out of her mouth to help drain the liquid from her lungs/tummy. She has a little IV--they are giving her fluids right now to keep her hydrated...she will not be able to "eat" anything--via nursing attempts, bottle attempts or even feeding tube...until she is off SiPAP. They will be putting a feeding tube in her, as they do expect her to need a little more nutrition than what she will be able to get nursing/bottle. She LOVES the pacifier, if you can believe that! Even with a tube in her mouth!!! That is a great sign that she is at least doing the sucking reflex right now...she wants to!

I am pumping...apparently this pump will be my new best friend for several weeks! They don't really know how long she will be here, but the general consensus/"guess" is at least 2-3 weeks...We will just have to see how things go...

So, it's certainly been an emotional journey the last 27 hours. John and I are doing well. Obviously we have our moments...I think our breakdowns are more out of "fear" of the unknown...and working through those feelings--some absolutely "silly" fears that don't matter, but that do cross our minds like, "what will people think?", etc. ....many fears that are completely out of our control--that we are just going to have to be patient and work through like, "will she be able to go to the same school", "how 'high functioning' will she be?", etc., etc.

It is scary...at the same time, our tears are NOT because we are so full of sorrow...we KNOW God chose this little girl for our family and that he chose our family for this little girl. Thinking about it that way sometimes gives me excitement in that she is going to bring so many "special" blessings to so many others. I know it.

Baby "Toe-Toes"

And, we are surrounded by such incredible people, that the answer to "what will people think?" is easy...part of that answer being that little Lauryn is going to be even more spoiled rotten than she probably would have "normally" been!

Tyler and Will came up last night and got to see Lauryn. We looked at pictures of her before going in (I posted these on the site) so they wouldn't be so scared/nervous. I spoke with Tyler a long time about Down Syndrome as well--we also looked at children/people with Down's so he could more internalize what this is (he has seen people with Down's). Will heard parts of it (we started conversation with him there), but I don't think he grasped that whole thing, nor does he need to right now. Tyler did amazingly well with it...I know he will have many anxieties about it (like we do), but I also know what a perfect big brother he is going to be to a sibling with special needs. Ben and Maddie are able to go into the NICU for a brief time, but we are hesitant to do that right now...we will likely just show pictures until she is more able to be held, etc.

Whew!

We can't tell you how much your prayers, support, encouragement, love, etc., etc., etc. have helped us through this...and will continue to help us through this journey. We feel your love so strongly and are SOOO blessed that Lauryn will feel all of that, too!

THANK YOU! I will keep you posted as much as possible...keep those prayers going that little Lauryn keeps fighting through her little hurdles right now...and that all of us will continue to find the strength, peace, and courage we need as we start out this new, wonderful journey with 5 children, one being a special needs child.

We love you!!!!

Jen

Monday, August 23, 2010 11:35 PM, CDT

BIG DAY YESTERDAY and BIG DAY TODAY...So yesterday when I went up to NICU around noon, Lauryn was having a BIG day! She had a wonderful night the previous night (Saturday) and they were switching her over from the Sii-Pap to just the little tube that helps with oxygen flow (the terminology often escapes me...but I figure I'm not the only one who just says "tube thing"...)...

They were also planning on feeding her later (via the tube already in her mouth...I thought they'd put another one in, but she is set to go in that respect...)

They first said they'd give her a little time without the Sii-Pap and then I could hold her, but when the Dr. was finished talking with me, the nurse and resp. ther. said, "Change of Plans...you get to hold her now!". That was awesome...I posted pictures of that, as well as some of her throughout the day yesterday...Holding her certainly made it more "real"...but allowed me to really start connecting with her. I was able to hold her for two periods of time yesterday...John has had a little "cold", so he was very hesitant to hold her yet...tomorrow...


I can't figure out how to rotate this picture!!! :(

Today was an even bigger day...Little Lauryn is tuckered out for sure!!!

I'll attempt to summarize things from the last two days...(it's hard to believe that Lauryn is only a little over than 3 days old! She's gone through so much in her first 3 days...)

* The pediatric cardiologist from Riley came yesterday to do her echocardiogram (it was the same one who did her ultrasound in utero)...everything looked wonderful...no heart issues!

* They did an abdominal ultrasound today. Because of the calcifications they had seen in the abdomen/around the liver during pregnancy, they just wanted to make sure there wasn't anything going on that may have been "missed." The calcifications near/around/on the liver were seen on the u/s today, but were listed as "clinically insignificant"...so everything with that was wonderful, too!

* An opthomalogist will be coming in sometime to check her eyes...and they will check her hearing definitely before she leaves here, but really don't expect those to be an issue...at least any more of an issue than what would be expected from any baby born/in NICU.

* They did the labs that will officially confirm if Lauryn has Down Syndrome...there really is no question...but must do to confirm. They also drew some labs to check for any thyroid issues she may have...again, the doctor wasn't too concerned about this.

* They've done a couple chest x-rays...he showed us one on the computer...oh my goodness! The tiniest little x-ray ever! Anyway...there is still some fluid on her lungs, but that is totally normal for 34 weeks/c-section baby...the doctor expects it to be gone by tomorrow or so!

* They are weaning her off the oxygen flow in the "tube"...She started at a flow of "4"--has been on that a day or so...they were planning to wean her off totally today (and feel she would have done fine), but she tuckered out from all the big changes (and from trying to draw labs), so they have weaned her down to 1...are going to let her stay at that tonight, then tomorrow take her completely off and see what happens! She has tolerated everything very well so far...Once they do that, she gets to try to nurse!!! So tomorrow she will likely get to do that, too!

* They removed her IV...one less tube...her skin is so sensitive...I noticed last night that her arm was really irritated from the tape on the IV...her little arm is almost raw where it was...:( She's gotten lots of extra lovin' from her nurse today b/c of that!

* We got to talk with Dr. Hertz today...the head of the NICU at Community...very involved with Riley (his wife is a NICU nurse for cardiology at Riley) in children with Down Syndrome support...he and his wife have a child of their own with Down Syndrome. He was AMAZING!!! He had so many supportive words...from a medical standpoint, but more importantly for us, from an experience standpoint.

* He said medically, Lauryn is doing fantastic. To be able to go home she must:

- be able to breathe on her own...maintain heart rate, oxygen levels, etc. on her own (well on our way...likely tomorrow that will be a "check")

- be able to maintain her body temperature ("check")

- able to successfully feed...receive the nutrition, etc. that she needs

The feeding will likely be the issue with Lauryn. She may totally take off and do very well quickly...or it may take her some time. We just don't know how that's going to go until we get started. All of the doctors/nurses have said this will be more of the deciding factor/what would mean a longer than not stay in NICU. But, that's okay! We can handle that.

The emotional support/encouragement he gave us in terms of "experience" and this journey were the most important part of today...and such wonderful/needed "medicine" for us.

Some things he said:

- It's OKAY for us to be feeling such an array of emotions, including a sense of mourning, getting mad at times, etc. If we didn't experience this/go through this, he would be concerned...as it might come back to hit us harder down the road...

- We are at the "bottom of the barrel" right now...our emotions are at "rock bottom"...it's not going to get better tomorrow or the next day--it will take a little time, but it WILL get better. He could not promise us when, but he did promise us it will NOT get worse!

- Things WILL be okay...this is a whole different journey than we had planned...but the end goal, etc. is the same...We can expect a whole lot out of Lauryn...she is going to be able to do so many things...and she is going to teach all of us so much!

- He is such a kind, wonderful man...he is going to give us his personal number and his wife's personal cell phone number and told us to please call...there are lots of doctors and nurses who have a lot of good information to say/explain...but the BEST resources...especially right now...are people who have experienced this...

- He said to stay away from the Internet (we actually have...typically I would have scoured the Internet for information, but haven't yet been in a frame of mind to even go there yet)! He is going to give us a big bag of information that he told us to "stick in the closet" and MAYBE get it out in 6 months or so to read. Dr. Hertz told us that there is so much information out there...there is a lot of information/"things that could/may happen" that are either not fully true or don't come to be true...like with ANY baby/child...there is a list a mile long of things that "could go wrong"...worrying and fretting over things that will more than likely NOT happen isn't worth the time...

I came across something wonderful today...that is similar to what Dr. Hertz was saying about this just being a different "path"/"journey" than what we expected it to be. I want to share it with all of you...

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.

You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say,

“Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

We just can't say enough how completely blessed we feel by the support and love we have from all of you. We are getting emails from people we hardly know, but who are praying for us...and encouraging us...and inspiring us. We have so many dear, dear family and friends who are our "rocks" and who are doing so many things for us/helping us--keeping our heads above water...every single one of you has touched our lives in so many ways. We have been told several times during this journey--especially the last few days--what special people/parents we are...how blessed Lauryn is to be a part of OUR family...and how our faith has been an inspiration to others. We want you to know that YOU ALL are that for us...Our family/friends/community are the foundation to our faith...you are our inspiration and our "examples" of faith, love and support...that guide us through this journey...as well as many other journeys in our lives...God has blessed us with all of you...I honestly don't know how we could have a better support system...a better family...better friends...better community than what we have...You all are gifts from God to us...we are so grateful...so blessed...and we love you all!

I will try to update tomorrow...hopefully with a report that we started our "feeding journey"! :)

Love,

Jen

P.S. Today was my mom's birthday! One special birthday gift she received was getting to hold Lauryn for the first time! :)

Tuesday, August 24, 2010 9:50 AM, CDT

MY PLANS...
I get discharged today! I'm having a hard time wrapping my head around the fact that I "technically" don't HAVE to be here after today...that I could go home...it just seems like a long time since I've been here! In the "big" picture...it hasn't been that long...and there are certainly Mommies that have been in here longer than I have (God Bless Them!)...it's just kind of a weird feeling!

My OB is discharging me today. I will still be a patient until midnight tonight...

They have room for me to "room in", which means I will have use of a room (either on NICU floor or on 4th or 5th floor) as my "home base"...they do not have any rooms upstairs right now, so I will likely stay in the room I'm in. I will not be considered a patient, have a nurse, have housekeeping (unless it gets disgusting :) ), etc., but it's a place I can stay to be close to Lauryn...like a hotel...free of charge! What a wonderful blessing they provide to parents of babies in the NICU!

My "plan" right now is to just stay here tonight. Since we will likely have a big day with nursing, etc., I want to be here close. I will be back and forth some after that, likely coming home for at least awhile tomorrow night...I cannot drive for at least two weeks, so that will factor into my daily plan, as I will need someone to drive me (in addition to someone watching the kids).

Another "Daddy's Girl"...

I'm getting ready to put my "own" clothes on after a shower, then head up to see baby Lauryn. I will update later!

Love,

Jen

Tuesday, August 24, 2010 11:20 PM, CDT

SMALL, BUT MIGHTY...Lauryn continues to amaze us...to think that she is now only 3 1/2 days old...and all the "obstacles" she has already overcome! She may be small, but she is mighty!!!

This morning I got to help with her first bath! How many times have I given a newborn a bath before??!??...and yet, it was like the first time...it was so new doing this with her being so tiny (to us)...She didn't "LOVE" it, but she did great!

During her bath, the nurse removed the feeding tube in her mouth and put a tiny feeding tube in her nose...I was a nervous wreck about this! :)...but Lauryn did fantastic...hardly flinched!

She was pooped after all that!

I went up later in the afternoon and they had removed the canella (oxygen tube)! Now we can pretty much see her whole sweet face! She is doing wonderfully off the canella...

Lauryn has a low resting heart rate...and still has those "decels", where her heart rate drops. It always goes right back up again...we are having to prop her head up a little during feedings to help with the "premature apnea"...helping her to remember to take a breath! They mentioned today that she might have to go home on a monitor if that continues...we'll see what happens...Lauryn and her monitors!!!!

She did so well this morning that she got to try to nurse this evening! It went fairly well for her first time....I can see why they said it's probably going to just take awhile...the LITTLE she did nurse wore her out completely! We also tried a bottle, but she was just too tuckered out to even attempt that. The nurse said she did really well overall for the first attempt...we didn't want to push her any more. They did increase the amount of "food" (milk) she gets at each feeding (through the tube now in her nose), and she is digesting, etc. great!

It was so nice to try to start that bond with her today. It was a little hard, too...nursing has come so easily for all my other babies...the "trip to Holland" prose I shared yesterday really came in to play...attempting to nurse Lauryn without as much "real" success made me miss "Italy" in many ways...it was more emotional than I thought it would be...

Lauryn's "Batgirl" mask - for under the bili light!

Lauryn's bilirubin went up a little more today...they are not going to stick her again until Thursday...but think she'll be under the bili light just a few more days. She is also going to be ready for a different bed (won't have to be in the incubator any more)...the nurse said they are going to need some clothes for her! Hmmm...I think I can handle that!

I am staying in "my room" tonight...John will head up to the hospital tomorrow morning so we can have a relaxing morning, just the two of us, with Lauryn. There has been so much going on, with so many people in and out, that we haven't really gotten a chance to do that. Tomorrow afternoon I plan to go home with him for awhile...spending the afternoon/evening at home with the kids in what seems like forever! I'm a little nervous, if that makes sense! I'll then likely head back to the hospital later in the evening...I SOOOOO appreciate all the offers of help with driving me, etc. and I WILL be taking you up on those offers! Right now, it's a day by day thing...

I added a few more pictures... a couple after her bath today and a couple from Tyler's first time holding her...he was in HEAVEN! Will post more in the next day or so!

Much love,

Jen

Friday, August 27, 2010 12:41 AM, CDT

GROWING STRONGER...Lauryn is almost 6 days old...it doesn't seem possible. In so many ways, the last few days have gone so quickly...in other ways, it's like things have been in slow motion. Our lives have been turned upside down and all around...with all of us growing a little stronger each day.

Lauryn is doing well. She keeps "passing" little tests each day...and getting a little stronger each day.
* All of her echos, ultrasounds, "tests" have come back looking good (as far as we know). They did have to draw some more labs...they tried several times last night and several times this morning...poor baby had to be stuck, poked and prodded so much (they even had to draw some blood from her forehead!)...the nurses felt horrible, but had no choice :(...she was plain exhausted this morning from all that...
* Her bilirubin seems to have peaked...it went down a tad today...they are hoping it will continue to do that...and that she might be able to get off the bili light in the next couple days. We get to keep the "Batgirl Mask"!...she actually has a new mask...that stays on her face/eyes a little better. You might notice it in a couple of the new pics I posted today...

* They put her in a different kind of incubator yesterday...it's still pretty much the same...Lauryn is actually able to maintain her body temp, but they want her in this type of bed while she's on the bili light. Once she is off the light, they will put her in a crib. The cribs are almost "funny"--so small! Those of you who know us well will get a kick out of the fact that it looks highly likely that ONE of our five kids will actually sleep in a crib!!!
* She is doing well with feeding, although it is a SLOW process. We've tried to continue to "try" to nurse, but she really isn't quite ready yet. We tried the bottle (talk about tiny!) yesterday...she did not do too well with it...choked a couple times (from just a tiny amount)--I was perfectly content holding off on the bottle! Her nurse today (she has been her nurse much of the time), thinks she just needs a little more time...she is not quite ready yet...it's likely more of a preemie thing than even the Down Syndrome...they continue to assure me that as long as I don't give up on pumping (morning, noon and night!), she WILL nurse...it may not be until after we get home, but she WILL do it. And it's such a good thing for her to do, as it strengthens her muscle tone just by nursing!
* Like they've told us, feeding is the issue/factor in when Lauryn will be able to come home. She must be able to take in enough milk/food/nutrients on her own (no feeding tube)--thru nursing and/or bottle feeding...they said it's not "impossible" for babies to go home on a feeding tube, but it hardly happens...they do all they can to get babies home off the feeding tubes...and unless there are other factors going on, they can get them there (no feeding tube and home)...Tomorrow Lauryn would have been 35 weeks...so at the max (hopefully), she'll be in NICU another 5 weeks...but will hopefully get to come home a little sooner...

* I went home to spend the night last night for the first time in almost a month! It was SOOO good to be home, but all of us are still going through a lot of transition. When I walked in the door, little Ben just stared at me with this smile on his face for several minutes...like, "Is it REALLY you? Are you REALLY home?"...so cute!!! They all were excited and it was wonderful to be able to hug and kiss on them, put them to bed, etc. Madelyn had her "breakdown" of sorts (she's done SO well with all of this) last night...just having to be by me every second, wanting me to hold her...she cried herself to sleep with me holding her like a tiny baby...just letting all of the emotions from the past few weeks ooze out of her...she had a rough time this morning "letting" me go back to the hospital, but seems to be doing better tonight (I am home again tonight). We are trying to figure out how to balance all this back and forth...when the best time for me to go be with Lauryn (and for John/the kids to go, as well)...when I should just stay vs. come home, etc., etc. Right now seems a good time to stay at home since she isn't quite ready to nurse yet...but it's sure difficult to leave her (although she is in WONDERFUL hands!!!). So we just continue to take it day by day...the kids are dying to have Lauryn home...all of them, aside from Tyler, are having a hard time understanding why she has to stay in the hospital...we've prepped so much for "When Lauryn comes out of Mommy's tummy, she'll come home...". But they are doing well...and it will be all that much "sweeter"/more exciting when we do get to bring her home...

Nanny getting to hold Lauryn for the first time...

I think that's all the news I have for now...we'll continue to keep you posted and keep adding pictures...even though we aren't able to introduce you to Lauryn quite yet, I'm getting very anxious to start seeing all of you..I miss everyone so much!

As always...THANK YOU, THANK YOU, THANK YOU for all of your above and beyond love, support, encouragement, etc.

Love,
Jen

Saturday, August 28, 2010 9:22 AM, CDT

HAPPY 1 WEEK BIRTHDAY, LAURYN!!!!...I can't believe it's been one week! In one sense, time has gone by quickly...yet, so much of it seems like a blur...with days completely running together.

We have had a great couple days...

Yesterday I had the chance to take the younger kids (Ben and Maddie) to a "play date" with some of my dearest friends...not only did the kids get to play, but I got to relax and "hang out"...just chat and talk. It was such a sense of "normalcy" that I needed (Ben and Maddie, too).

I then came up to the hospital and spent the afternoon with Lauryn. When I got here, her nurse was SO excited...she had taken 20 mL (of her 32 mL feeding) from a bottle!!! She had done wonderfully! My big girl!!! We let her "rest" for the next couple/three feedings, as she was pooped out.

They took the bili light away! She is doing great...even though Lauryn can maintain her own body temp, they still "wean" them off the incubator bed...slowly decreasing the temperature in the bed. As soon as she is weaned down all the way (likely today-Sat), she will get to go in a crib!

Nanny washed all her little clothes and I brought them up yesterday. We get to dress her up now!! She is wearing little clothes...and just looks so stinkin' cute! For me, that was one of the best things that's happened in a few days. Not that she wasn't our "baby girl" before...but getting her in a little pink outfit (so tiny) just transformed her into "OUR BABY GIRL"...I see HER so much more...and not little wires, etc. The nurses love it, too, of course...

Notice her little "leopard" print gown...SOOO cute!!!!!

Leaving the house yesterday was next to impossible--emotionally--as Madelyn had such a hard time...it absolutely broke my heart.   The kids are doing well, overall, but this back and forth is another new transition. We will figure out how to balance everything...and this will be another opportunity for all of us to grow. It's interesting...all of the "separation" the last month has helped us grow even closer as a family...We know much of that reason is because of all of the support we have in all of you!

I got to spend last evening with a dear friend of mine from the "north side."  She stole me from the hospital...took me to dinner (best hamburger I've ever had, I think!) and we then took a little trip to Kohl's.  It was WONDERFUL...being able to relax a little...getting out of the hospital...and getting to spend time with Beth...awesome. When we returned, Lauryn was really awake/alert!  We "snuck" in to see her nurse just having a "ball" with her...since she was so "awake", we tried nursing...she did great! She actually nursed a little! Again, she gets so tired out so quickly...but we all were excited! Our goal is to get her home...on a bottle, nursing, or a combination of both. It is actually easier for Lauryn at this point to take a bottle...which is why she may not be nursing fully when she gets to go home...it's interesting, in many circumstances, mom/baby transition from breast to bottle...but in cases with preemies/coupled with the DS, it is a transition from bottle to breast...

Dr. Hertz came in yesterday to chat for a minute. The chromosomal labs came back and confirmed Trisomy 21 (Down Syndrome).  For many, this confirmation can be very difficult, as it puts a "finality" to things.  For me, it was okay. I did not expect anything different...I have made lots of "progress" this week in coming to terms with everything--because we have so much support in all facets of our lives (don't get me wrong...I/we certainly still have our "moments"/meltdowns)...that the "finality" just helped me keep moving forward...counting my blessings. They had also done some labs to test for thyroid...Dr. Hertz said that all came back "normal"...and essentially we are just so blessed because Lauryn doesn't have any of the health issues that so often are there in babies/children with Down Syndrome. We get to just focus on our little girl and how we are going to help her achieve all of her potential...sounds like any parents goal for their new baby/children, huh? :)

I posted a few more pictures...and will post a bunch more later, this being her "1 week birthday" and all! :) Maddie is going to get to see her for the first time today, too...(we wanted her to wait a couple days in the beginning, then she got a cold/fever :( ). She is so excited...and NEEDS to see her, as I don't think she feels any kind of "connect" with her yet...I'm not even sure she completely understands that she is actually HERE!

Sending our love to all of you...

Jen

Sunday, August 29, 2010 8:15 PM, CDT

Growing Each Day...We walked in today to find Lauryn in a regular (hospital) crib! She is SO happy and content...and just looks so sweet in her new bed.

She's doing great...her primary nurse (we can't say enough wonderful things about her) got her to take almost an entire feeding by bottle today! She is still in the beginning stages of this...as she has only done this a couple times...but she's showing more "cues" each day. Everyone says she is doing awesome...

Lauryn's bilirubin did go up a bit today...they have to stick her heel AGAIN tomorrow :( (thought we were done with the poking)...if it goes up, they will put her on a bili blanket--rather than the light--so that she can remain in her "big girl bed"...

It was really good to be home with the other 4 kids and John last night and this morning/early afternoon. It was a much more relaxing "time" home...I was even a little productive sorting laundry, etc. Don't worry...not that I don't "overdo" it, but I listen when my body tells me to "STOP!"...John and the kids brought me up to the hospital this afternoon...spent some time with Lauryn (more pics!!!--I'm having to remove many so I'm not over the limit on pictures!!!) and then headed home.

We are having a tough time with the back and forth...it's really hard. I am so torn in two directions...Lauryn is in such good hands here--and they spoil her...but I want to be here for all her little milestones, as well as to nurse when she's ready. But I also want to be home with the rest of the family...who may possibly need me more at this moment. Madelyn has such a tough time with me coming/going...hopefully a couple things will happen...1) we'll be able to find somewhat of a routine in which nights I stay/come home AND 2) Lauryn will be able to come home sooner than later (still no word on any kind of time frame...not sure there will be a definitive one...but maybe this week we'll have a little bit more of an idea...?).

Many people have asked how John is doing with all of this...I am married to such an incredibly amazing man/husband/father. No, not everything is in the right "spot" at home, etc., but he has managed to keep things going in such a positive way...while still working the majority of the time...and trying to get up here to spend time with Lauryn. He has been the "rock" at home...with such a full plate. John's mom and my mom have been alternating (and sometimes overlapping!) staying at the house with the kids...They have been invaluable...there is NO way we could be doing this in any kind of reasonably "structured", happy way without them. My brother and sister-in-law have also been able to help with the kids...as well as numerous others helping with driving, play dates, etc., etc., etc. Another thing that has allowed John to keep his head above water is having the Meals for New Moms Ministry at St. Jude bringing in meals three times/week. Wonderful women have been making our family dinner 3 times/week since I was admitted to the hospital...it's amazing, so generous and so appreciated! Father Steve (St. Jude) has come up several times to check on us, give blessings, and provide support. We are so blessed!!!!

We have received so many emails/messages/cards of support and encouragement. I am trying to slowly respond to them...please know that we have read them...they mean the world to us...we so appreciate the contacts/connections we've been offered...and we can feel all of your prayers, love and support each minute of each day!!!

Look forward to letting you all know the progress Lauryn makes this week!!!

Love,

Jen

Tuesday, August 31, 2010 11:40 AM, CDT

Baby Steps...Lauryn continues to do really well! For so many days, she had "huge" things happen...off the Sii-Pap, IV out, off the canella, off the bili light, new beds, etc. She's still progressing wonderfully...her progress just isn't so "visible" in such a big way...but she's still taking those "Baby Steps"!

Right now the "big" thing is feedings. She is taking a bottle for some of her feedings...yesterday she took a "full" bottle (her whole feeding) once or twice and at least a little of a bottle for each feeding. Today she took a full bottle this morning...and part of one at her last feeding. It wears her out. :) It's a LONG process...as we have to constantly "stimulate" (tickle her, rub her feet, etc.) her to get her awake/keep her awake. I've found she does much better with the nurse feeding her, as when she gets in my arms, she just wants to snuggle and sleep! The nurses say that's very common...and when she puts it all together and realizes how much she likes to "eat", that will change and she'll be able to stay awake in my arms, too!

We have held off on even trying to nurse, as it's so much more work for her (plus with the just falling asleep thing)...the lactation consultant for NICU is planning on coming to chat with me sometime this week...she is supposed to be awesome and will hopefully have some tips/tricks that we can start using to get her to "feed" (by bottle and breast) successfully.

She's still at the "beginning" stages of this "feeding thing"...we don't know how long it will "take"...she's in charge on this one (basically she's in charge of everything!)...she needs to be either nursing or taking the bottle for every feeding (the entire feeding) before they will take out the feeding tube (no more "tubin it", as it's called). She'll then have to stay several more days after that so they can be sure she's gaining weight, maintaining her body temperature, getting all the nutrition she needs, etc.

Another small aspect that might keep her here a bit longer is her bradycardia...she still has "bradys" here and there...where her heart rate drops suddenly...it always comes right back up and doesn't affect her oxidation levels, etc. Her bradys have improved dramatically...the first week or so she had them all the time (a few an hour)...she is down to just a few a day, so she may "grow out of it" before she leaves here...or the Dr. may decide that she needs to go home on a monitor.

In MY "mind", I'm thinking at least a couple more weeks...but really I have no idea! She wasn't even supposed to "be here" for another 4 1/2 weeks...so we will see.

Pa is going to spoil her rotten!

The kids/John are doing well. It's been hard on them...Ben has really come around and is now probably handling the back and forth the best! Tyler (especially) and Will have their moments...even when I am home, they get to see me least (with school), so they are still adjusting to everything. Madelyn seems to do better when she can see me, but not "wake up" with me there only to have me leave awhile later. In a way, it's a blessing that Lauryn isn't nursing yet, as it is "easier" for me to be away from her, knowing that she is in excellent care. The nurses spoil her rotten. Her two primary nurses are absolutely crazy about her...even when they aren't her "official" nurses for the day, they are still in here snuggling her up. That is so comforting to us...to know that she is being held, snuggled and loved up when we can't be here...not to mention having all of her other needs met!

She started Occupational Therapy yesterday and Physical Therapy today! It's amazing that, at 10 days old, they are already able to work with her and start the process of early intervention therapy to help her. We have a few little exercises to do with her several times/day...these help increase her muscle tone...Lauryn has already done more "crunches" in the last 2 days--at 10 days old--than I have in a LONG, LONG time!!! It's motivation for me to start exercising when I'm a little more healed from the c-section...

One of the nurses spoke to me a couple days ago about the Buddy Walk (for Down Syndrome). She thought they had a packet of information for me...and said that nurses from the NICU walk in the Buddy Walk each year. She was hoping someone was going to talk to us about this...and possibly forming a team to walk...for Lauryn. The Buddy Walk is Oct. 23rd this year (downtown)...it's something I am really interested in doing...just a couple of days after my 40th birthday...I think it would be an awesome way to celebrate turning 40! We will be gathering information about that, determining if it is something we are able to do this year (without pushing ourselves over the edge with all of the changes/new schedules, etc. we will have), etc. We will let you know...any ideas for a "team name"? Lauryn's...???

It's time for Lauryn to "work out"...I have a few more pictures (surprised?) that I will post later...

As always...thank you, thank you...

Much love,

Jen

Thursday, September 2, 2010 9:27 PM, CDT

This is Lauryn's blood pressure cuff - can you say, "TINY"?!?

Slowly But Surely...We are still plugging along up here at Community North NICU! :) Lauryn is doing really well...she is developing a little personality already...
- She makes the funniest/cutest faces! We can tell she is going to be full of expression!
- She does NOT like her britches full! She squirms and fusses...and has a little "squeak" cry she does when she's had enough!
- She has a similar "squeak" when she's hungry!
- When she is tuckered out and "done" trying to nurse or take the bottle (anywhere between a few minutes to 10 minutes or longer), she will purse/tighten her lips like "NO MORE"...

Physical therapy was in today and told the nurse that Lauryn is really improving already! She's such a strong little fighter, already seemingly determined to beat the odds at whatever comes her way...

Dr. Hertz came in today and said she's doing great, as well. He said he knows feeding is "slow"--really that is what is keeping her here at this point...but said, given her prematurity and low muscle tone (from Down Syndrome), she is doing exactly what he would expect her to do...she's right "on track"...and encouraged us to hang in there (esp. me with pumping...don't give up! don't give up!).

Lauryn is back up to her birth weight! She may even be a little more tonight...she is "filling out"--growing and changing right before our eyes each minute (like they all do...). She'll be 36 weeks tomorrow (they actually refer to her as this vs "2 weeks", which she will be on Saturday)...

The kids were up at the hospital tonight. It is so fun to watch them interact with Lauryn...they just love her to pieces, and are so anxious to have her home. Her primary nurse brought in some little diapers, a little bottle and a couple hats for Maddie to use on her baby dolls. TOO cute...Maddie was SO excited. I thought Lauryn's diapers were small...you should see the ones she brought in for Maddie, and they aren't even the very smallest size...they were no bigger than a postage stamp!!!

Maddie got a new hat that she wanted to show her baby sister!

We have a long weekend this weekend...the kids don't have school tomorrow or Monday. I'll still be back and forth, but am looking forward to spending some time with John and all the kids...Tyler's birthday is next week...we will do a little something for that this weekend. My brother, Matt, and his girlfriend are coming in from Kansas next weekend, which will be wonderful. We haven't seen them since July...I always LOVE it when all my brothers are "home"/around...we will be celebrating Lauryn's birth, as well as several b-days (Tyler, my mom, my niece, Sophie--Jonathan's youngest).

As, always...we continue to so much appreciate EVERYTHING--all of the support, encouragement, rides, dinners, etc., etc., etc., etc. Your love and support has filled us so much that it spills over to where even the NICU nurses, doctors and other families can see/feel it. It is evident to them what incredible people surround us...they love these babies up here SOOOO much, and knowing that Lauryn is so loved and cared for warms their hearts, too!

Love,

Jen

Sunday, September 5, 2010 7:15 PM, CDT

BIG GIRL ON THE BLOCK!!!...Lauryn has reached 5 pounds! Woo hoo!

She has really taken off on eating (in terms of amount, anyway). She's also doing really well with the bottle! She took her WHOLE bottle the other day...and TWO WHOLE BOTTLES last night! She's still struggling some with nursing/SNS...and doesn't bottle feed for me as well...it's starting to "click", so hopefully here soon it all will and she won't just want to go to sleep in my arms. :)

A couple days ago, Dr. Hertz had said she was doing exactly what he would expect in terms of feeding...she is right on track...today he said she's actually a little ahead of what he thought she'd be doing! GO LAURYN!

I get to drive again! I drove for the first time in about 6 weeks or so last night. We're not sure it's actually going to make things all that much "easier" with going back and forth, as I can't really take the Suburban for the afternoon/evening b/c John needs it for running the kids places. We are trying to figure out the best schedule...but I will likely still need rides here and there.

I've met another set of parents up here...with triplet boys! They actually live about 5 minutes from us...the dad is a physical therapist assistant and has several contacts for First Steps physical therapy...the NICU secretary has a nephew that has Down Syndrome...her brother and sister in law belong to Nativity/live on the South side...I've reconnected with a dear "old" friend of mine that I met through MOMS (she has a little boy with Down Syndrome) and will hopefully be joining in on some fellowship activities with other families that have children with Down Syndrome. It has been almost surreal to really, really SEE how God has placed and is placing people in our lives...there is NO question that this is the case...

It looks pretty likely that we will be doing the Buddy Walk in October! Depending on the weather, Lauryn may or may not be able to be there. There are not any "extra" restrictions for her when she gets to go home--in terms of being in crowds, etc. Just the normal "don't take to church nursery, enclosed areas with big crowds”, etc. With it being my "big birthday weekend", we are considering staying downtown for the weekend...that way we can be close and someone can stay with Lauryn (or other kids) at the hotel if needed. Michael, my brother, is working on special t-shirts for the event! More details will be forthcoming...but mark your calendars for October 23rd (I believe there are activities/festivities most of the day, the actual walk is from noon to 1 pm)!

We will be working on a baptism date this week...it will likely be sometime in November...more details to follow with that, also...

I am home tonight to enjoy the evening with the kids (great weather!) and will head back to the hospital tomorrow afternoon...it's so hard to "leave" wherever I am...It's like two different "worlds" right now...wherever I am, I miss the other so much! We are trying to think about the fact that the amount of time left before Lauryn comes home (3-4 weeks, likely) is LESS than the amount of time I've been in the hospital/back and forth (5-6 weeks)...so, the end is in sight! :)

Love to you all!

Jen

Thursday, September 9, 2010 12:15 AM, CDT

Slow Goin'...Lauryn continues to do really well! She has had a few "accomplishments" this week...but it still seems like things are so slow! We just want to get her home so badly...she's been in NICU almost 3 weeks...which has gone by very quickly...yet it seems like eternity!

One of the nurses added this "WARNING" to Lauryn's board! :)

In the past few days, Lauryn has:

1) Continued to take bottles here and there and nursed a bit (tiny bit)...she is not yet consistent with it...it is always kind of "hit or miss"...we are just waiting for that "light" to fully click on!

2) Gained more weight! She is up to 5 pounds, 4.1 ounces!!! (She even lost a few ounces the day after she reached 5 pounds)! She's really "filling out"...starting to look more like a "newborn" than a "preemie"...she's still pretty darn tiny, though! We've heard numerous times that she looks "big" in her pictures...the pictures don't do justice to how tiny she was/is and how far she's come...we have to get so close to get a good picture of her that it makes her look much bigger than she really is!

3) Lost her umbilical cord! Just a little belly button now! :)

4) Passed her hearing test!!! Woo Hoo!

Lauryn's crib

5) Done exceptionally well with her exercises...even adding one or two more little exercises to her regime...her muscle tone is already improving! The therapists (OT and PT) are so pleased with her progress! Tyler was here over the weekend and I showed him her workout routine...he just couldn't stop giggling..."Are you making her do SIT-UPS?!?"...it is pretty humorous to think that at 3 weeks she is doing sit-ups...

Couch - can you find Lauryn's little foot propped up?

As I said, we are just getting more and more anxious to get her home. I am so ready to try to get back into some sort of "normalcy"...it will be a totally new and different "normal", but we will all be together. There was a little bit of talk (with Lauryn's primary nurse) about the possibility of looking into moving her down to Community South. We decided not to do that b/c we just love the doctors and nurses up here so much. Getting used to a whole new set-up would be hard...and it would really only save us about 10-15 minutes. I'm not sure if I've mentioned the fact that at Community North, each baby has his/her OWN ROOM (there are also several "twin rooms" and one "triplet room"). In each room is the baby's bed/equipment, sink, refrigerator/freezer (for breastmilk), a couch, a lounge chair and little table/lamp,

Cabinets for clothing/personal items, shelves for special items

cabinets for baby clothes/parent things, computer, etc. It is WONDERFUL! It is so nice to be able to sit with her, try to feed her, share with family, express our emotions, etc. in private. There aren't a lot of NICU's like this around (although it is becoming more the case...Riley is actually on hold right now to convert their NICU to private rooms)...we have been spoiled and really only want to "leave" this facility when we take Lauryn with us...

Sink area and refrigerator / freezer

Lamp, monitor, and recliner - I spend a LOT of time in this!

I've been staying up late this week...way too late a few nights...reading a book some dear friends of ours gave to us. It's called Road Map to Holland by Jennifer Graf Groneberg (not the same author as the prose I shared in an earlier journal--Welcome to Holland, Emily Perl Kingsley--altho that author/her words are where Road Map to Holland 's "title" came from). I started this book a couple weeks ago and just wasn't ready to read much past the introduction. I picked it up again several days ago and finished it today...what an awesome, awesome book! This mother...a mother of Carter, Avery and Bennet--twins, Avery has Down Syndrome...was ME...the first several chapters (which tell about the birth of the twins, the diagnosis of Avery having Down Syndrome, premature delivery, a fairly long stay in the NICU, and bringing the babies home) were so incredibly "relate-able" (is that a word?) to me/us...it was like she was a fly on the wall or standing watching through a window...seeing, hearing, feeling all that I went through/am going through. It was hard to read some parts...inspiring to read most parts...and filled with hope, which brought me such a sense of peace about this journey we are starting...about the endless potential of Lauryn. It helped me to try to keep focusing on the small, little things that are such big accomplishments...not only for Lauryn, but for all my kids. I don't want to miss all those special times worrying about what is to come next or things completely out of my control. This book is a wonderful book for anyone...especially mothers...it may be a Christmas gift from me--so be ready! :)

We are planning on doing the Buddy Walk in October...since it is past midnight, I'm going to post the details of that in the next couple days...:)--how to join "Little Lauryn's League of Awesomeness" team of walkers...how to pledge/donate to Down Syndrome Indiana if interested, etc. I also have some more pictures to post (I know...shocker!).

Also, Lauryn's baptism will be on November 21st...at St. Jude Catholic Church after the 12:00 (noon) Mass. More details as we get closer to that date...

Finally...please keep our friends, Brian and Connie, in your prayers over the next several weeks/months. I wrote about them in a previous journal...Brian started his intensive chemotherapy today...his bone marrow transplant is scheduled for next week...Wednesday, the 15th.

Thanks for everything...as always...sending love to you all!

Love,
Jen

P.S. HAPPY BIRTHDAY, TYLER! I can't believe it's been 11 YEARS...I love you!!!!

Sunday, September 12, 2010 8:48 PM, CDT

What a Weekend!!!!...Whew! I am tuckered out!!! We've had a jam-packed last few days!

Uncle Matt...another great (but too short) visit!

Matt and Allison were here this weekend. It was SOOO good to see them...it always goes by way too quickly. It never seems like enough time...They were able to spend some time up here (hospital) on Saturday...and a bit more this morning. My whole family (Jen, Matt, Michael, Jonathan and parents...plus!) met in Kokomo Saturday evening for dinner. Unfortunately, Dad was on 24 hour call, which meant he couldn't leave Kokomo over the weekend...so it worked out that we could all be together for awhile up there.

Matt's girlfriend, Allison luvin' on Lauryn...

We just had a lot of driving/back and forth...came up to hospital Friday afternoon...stayed all night...John and kids came up Saturday afternoon...we all headed to Kokomo Sat. evening...dropped me off at hospital on way home late Sat. night...I spent the night...then hitched a ride with my mom to Roncalli for Tyler's first football game (Raiders won!!! Super game!)--they got to play on Roncalli's football field--too cool!...went home to spend some time with kids and came back to the hospital after showers/baths to spend the night again...will head home tomorrow morning so that I can hopefully get to take Ben to preschool tomorrow afternoon!

Lauryn has had a great weekend!

* She is up to 5 pounds, 8.3 ounces (5 1/2 pounds)! She only gained 3 grams from last night to tonight, but that's okay...she's gained so much over the last week...Her nurse said they will actually be happy that she's tapered off a bit! I have to say I was getting a little worried...I can't keep up with the pumping the way it is...if they increase her feedings too much more, I'm afraid I won't have a chance! :)

* She has taken more feedings by bottle...or nursing/SNS, which is great. I've been staying in hopes of getting to work in a nighttime feeding (just "because", as well as to help with my milk supply)...I've set my alarm the past 3 nights for 3 am...gotten up...walked from one end of the NICU to the other (my room to her room)...to find her sound asleep and not interested AT ALL in doing anything but sleep! :) Stinker...she made up for it today, tho...

* We gave her a bath today...she was wide awake and ready to eat!!! The nurse took her feeding tube out for her bath and decided to leave it out for her feeding. She nursed (truly nursed!) for about 5 minutes and then took an entire bottle FOR ME! Her nurse decided to give her a break with her feeding tube and leave it out for awhile...she thought she'd see how she did at her next feeding to see if/when she had to put one back in...I arrived at the hospital around 9 pm to find her with her tube still out! She took her entire bottle at her 4 pm and 7 pm feedings, too! We will see how she does at this next feeding...Her nurse mentioned that if she keeps this up, she will be home in another week or so...there's a flicker of light at the end of the tunnel!!!

This next week is going to be crazy busy...I will be back and forth A LOT...hospital visits, home, football practice, preschool, a couple other appointments--hopefully including a haircut, which I DESPERATELY need!!!!! :)

So...keep those prayers going that Lauryn keeps up the great work...We can't wait to get her home!!!

Much love to you all!!!

Jen

Tuesday, September 14, 2010 11:15 PM, CDT

Homecoming??...What a huge last couple of days we've had! Soon after I wrote the journal on Sunday, we had to put the feeding tube back in. She had gone almost all day and just tuckered out. HOWEVER...she then took her bottles through the night and into the morning. On Monday morning she was to have her feeding at 9:00 am. She wasn't showing any cues/was pretty sleepy...in talking with her primary nurse, we decided to let her wait a bit. It was starting to seem like about 45 minutes after her feeding (when through the feeding tube), she would wake up...our plan worked...she woke up about an hour later and took her whole bottle for me! Her nurse then suggested that we try to put an order in to let her feed more "on demand"...every 3 to 4 hours to see if that helped her pick up/not have to use the feeding tube. She has taken EVERY feeding since (by bottle...she has nursed a bit...she is still learning, but we are hopeful she will pick this up as she gets home and gets a little stronger)!!!

She still has a certain amount she must take within a certain time frame. Depending on how much she takes, we let her sleep either 3 hours before her next feeding or closer to 4. Today, it's been closer to 4...She's done so well that the nurse practitioner said to take her tube out this afternoon...she said she will either "sink or float"...so far she is floating!!!

As a result, assuming she continues on this path, gains weight, and doesn't have any bradycardia (heart rate drops) and/or desats (she still does a little, but comes right back up)...she will get to come home in the next couple days!!!!!!!!!

It doesn't seem real...we are so ready to have her home...at the same time we are back-pedaling a little, saying "WAIT! We have a few things to do!" We are nervous! This is whole new territory for us...I've nursed all the others--feeding them "on demand"...not having to prepare bottles or watch so very closely how much he/she is getting, etc. We also have to really watch Lauryn as she takes the bottle or nurses for cues that she's forgetting to take a breath...We've always been sleep deprived, but this time around it's going to be even more so-- at least for awhile...We will also have to continually check her temperature, etc.

The tentative plan is to get her car seat study done tomorrow (we still have to get the car seat up here!)...get her pictures scheduled/done...get her Hep B vaccine...room in tomorrow night--likely with her in the room with us (off the monitors, etc.)...then get to take her home on Thursday! This may be give (not take) a day or so (may not be until Friday)...once I talk to Dr. Hertz in the morning, I will know more.

SO...we are headed home soon! She will have been in here close to a month...plus the 3 weeks I was in the hospital...it's time to have all of us under the same roof...:)

I will update tomorrow to let you know the final plans!!!

Love,
Jen

P.S. Keep on praying for our friends… Brian is scheduled to have his bone marrow transplant either late tomorrow night or early Thursday morning...

Wednesday, September 15, 2010 10:35 PM, CDT

WE ARE HOME!!!! Well, I thought it was give (not take) a day or two...but we ended up being surprised, as they discharged us today!!!

Dr. Hertz said he would have liked her to gain a little more weight, but he felt she was going to do this, and possibly would do better at home. He went on to say that he is exceptionally pleased with how well she's done...that she is going home "sooner" than many preemies without any add'l issues (Down Syndrome)...and that often babies with Down Syndrome will go home with a g-tube. She's done/doing awesome! Hopefully we will be able to continue her progress at home! She is eating every 3 1/2 to 4 hours...and keeping up with the amount she is supposed to take. We have to go in on Friday for a weight check, so we will see how it all plays out!

Lauryn during her car seat check

She had her carseat check we took some "final" pictures of her room and with her nurses...and headed out around 7:15. We got home around 8:00--the kids were over the top...so beside themselves with excitement. It has been a madhouse around here tonight!!!!

First Steps called today and they will be out on Monday for her initial assessment. Hopefully we will be able to get her therapy started really soon!

So...we are off and "running" on this journey..."running" may not be the right term quite yet...at least not in a straight line quite yet!!!

Thank you, thank you, thank you for all of your thoughts, prayers, well wishes, etc., etc., etc.

Love you all!

Jen

Friday, September 17, 2010 10:35 PM, CDT

A little chaos...:) Whew...I'm not even sure "chaos" describes the craziness around our house right now! :) Wednesday night was CRAZY, to say the least. The kids were absolutely beside themselves with excitement. No one was in bed before 10:30 pm (maybe later)...we even had two sets of extra hands with my mom and John's mom here!

Thursday morning was just as crazy...I was completely overwhelmed--feeling like I had no "control" over the four "older" kids, let alone the baby!!! They kids would only "let me" do things for them (get a drink, fix lunch, etc.)...I'm still adjusting to Lauryn's schedule/needs...things like laundry, organizing the baby's clothes/things, etc. need done...aaaaagh! The afternoon/evening got a little better...Lauryn has had to adjust to all the activity, as well. She is used to quiet surroundings...bringing her into this house probably about put her over the edge! She probably wondered where in the world she was!!! I quickly learned she can be easily "overstimulated"...so I had to take her into a quiet room every so often to feed her, let her get some rest, etc. She is doing better today...getting used to these new, not-so-quiet surroundings.

Overall, today has been a lot better. John worked from home today, which helped a lot (he went to work yesterday). I took Lauryn up to the hospital for a weight check/assessment. She gained two ounces--weighs 5 pounds 11.5 ounces now! The nurse said she looked great! We are watching her closely for reflux...the other four kids had it and had to be on medication. That makes her more likely to have it...plus being premature also increases her risk. Last night she had a couple episodes where she spit up (through the nose--:( )...oh, she DID NOT like it! Neither did Mommy! Hopefully elevating her head a little more will help with this.

Of course, it is WONDERFUL being home and all being under one roof. We are having some "adjustments"...it's just going to take time for everyone to settle into this...get used to sharing attention with yet another little person...coordinating little Lauryn's needs into our already crazy schedules, etc. I'm not getting a lot of sleep...Lauryn is actually doing really well--it just takes her up to an hour to get her bottle down...we have to be pretty particular on watching her/making sure she is taking certain amounts/enough...I'm having to keep her awake/wake her up to get her entire bottle down...I've had moments where I've wondered if NICU ever gets a call from a Mom/baby asking to come back...maybe we can stay in one of the "family rooms" as an "outpatient"...:) She keeps improving though...I've already seen a difference in her ability to get her bottle down (we are still working on the nursing thing...they keep telling me it "will" happen...so I'm not giving up yet...this is one of the new things I'm experiencing in " Holland"--in "Italy" it was so easy!). She is such a little sweetheart/snuggle-bug...

I've posted more pictures...I think I have like 270 pictures in my "Lauryn's Birth" folder...usually I'm pretty horrible about taking pictures...I've become a maniac!

I'll update more in a few days...we have our First Steps intake on Monday...and our first visit to the pediatrician on Tuesday...poor John is upstairs with four children acting like "wild banshees", so I better go...:) Have a wonderful weekend. It never seems close to enough to just say "THANK YOU" for everything...but know those words are full of our appreciation, gratitude, and love!!!

Jen

EXTRA TIDBIT: It hit me today that John's birthday is July 21...my birthday is October 21...and Lauryn's birthday is August 21...and Lauryn has Trisomy 21...21 is our lucky number!!!

Friday, September 24, 2010 9:50 AM, CDT

Adjusting...It's been a little over a week since we've been home (and since I've journaled--I'm sorry about that--I do have intentions of keeping this going, as it's really been a "release" for me! I enjoy it as much as others tell me they do!).

Lauryn LOVES her cuddly Teddy from Mum-Mum!

Things are going pretty well. It is overwhelming at times...we are just trying to take it one day at a time!

Lauryn is doing great! She has improved so much on eating! She has her bottle pretty well "mastered". :) It doesn't take her as long to eat now (about 30 minutes as opposed to an hour). She is getting stronger and hopefully will be able to nurse here soon...she's done better, but still nowhere near where she would need to be to get all of her nutrition by breastfeeding. I still have hope, but have also prepared myself that breastfeeding may not be something I get to do with Lauryn. It makes me sad, but I'm grateful that she is eating well by bottle at least. Boy, I didn't realize how "easy" breastfeeding is!!! The getting up to make the bottles, keeping awake to watch her closely, etc. is kicking my rear-end! :)

We had her first visit to the pediatrician on Tuesday. She reached 6 pounds!!! The doctor (it wasn't her official pediatrician) was fine with that...altho she wasn't jumping up and down (like I started to do!). She explained that we have to just watch her closely. She also mentioned to not get panicked if she goes backwards a little...that happens. It burst my bubble a little...:(. She has continued to do really well the past few days and I can tell she's grown. Everything else checked out great...we go back this Tuesday for another check--this time with our doctor, Dr. Wagner. We will also talk more about whether Lauryn gets approved for the RSV series of injections. She is borderline, so we will see...they are EXPENSIVE (to the tune of at least $1100/shot for 5 or 6 shots!), so if insurance doesn't cover it, we have to look at a different route. Lauryn is more prone to RSV with her prematurity...it makes me paranoid! We'd rather not have another visit/stay at the hospital.

First Steps came on Monday to do her intake. It was basically an information session...a couple therapists will be coming on Thursday to do her evaluation to determine if she qualifies (she will, as she has a diagnosis) and for what services (OT, PT, etc.). We will then have another appointment to make her "Family Plan". So, hopefully her therapy will get started here in the next 3-4 weeks. I may need to get a different calendar...one with more space for each day!!!

We've loved being able to get back to our lives...especially getting to see everyone again! We've missed you all so much!

As always...THANK YOU for all of your continued prayers, support, encouragement, etc. We could NOT do this without you!!!

Love,
Jen

Friday, September 24, 2010 10:05 AM, CDT

BUDDY WALK 2010!

The Buddy Walk is only 29 days away!

2010 Buddy Walk
Saturday, October 23rd, 2010
Celebration Plaza, White River State Park
Downtown Indianapolis

* There are lots of different events throughout the day...the actual walk begins at noon and takes about an hour.
* It is very laid back--you don't have to walk the entire thing...or even walk at all.
* The walk takes place along the canal...there are lots of places to stop and talk, rest, enjoy, etc.

* For more information (including a schedule of events) about the Buddy Walk, visit https://www.dsindiana.org/buddyWalk.php.

* If you are interested in making a donation to Down Syndrome Indiana (in honor of Lauryn), visit http://www.firstgiving.com/jenniferbuechler .

My brother, Michael, is working on getting some "team t-shirts" made. More details about these to come...:)

We'd love to see all of you on the 23rd (I will be the big "four-o" then!!!).

:) Jen

Thursday, September 30, 2010 9:27 AM, CDT

BLESSED BEYOND MEASURE…Whew! It’s a whirlwind around here! Some days I’m keeping my head (barely) above water…other days not so much!!!

Lauryn is doing great. She had another weight check on Tuesday. She weighs 6 pounds 4.2 ounces. She’s growing! There is a certain range that the doctors want to see babies grow each day…I can’t remember exactly what that is, but I know Lauryn is on the “lower” end of that range. She is gaining adequate weight, but Dr. Wagner would like to see her gain a little more. :) I can tell she is growing, and actually expected a little more gain than 4 ounces. I guess all of it went straight to her now little chubby cheeks. :) We will keep plugging along…

Lauryn is doing better with nursing. I have been really, really struggling with what “to do” in that regard…just when I was about to “throw in the towel” (give up), she started “really” doing it! We aren’t close to exclusively nursing, but today—for several of her feedings—she nursed for 10-15 minutes, then took her bottle. I’m going to give it a little more time and see how she does/how my milk supply continues. Sometimes continually trying to get her to nurse…plus pumping (another 20 minutes)/storing…plus bottle feeding…(plus 4 other kids!) gets overwhelming. I don’t want to give up too soon, yet at times it might be nice to take something off my plate and be able to focus on other things that need done…like LAUNDRY (OH MY GOODNESS!!!). But, then I feel guilty…Breastfeeding is beneficial in general…but it’s sometimes even more helpful to babies with Down Syndrome because it helps their muscle tone. That said, I am so truly grateful that Lauryn is doing so well with the bottle. She really has had no issues with “feeding”…and this isn’t always the case with babies that have Down Syndrome. Yet another reason for us to feel so BLESSED.

I finished up another wonderful book. This book is called Gifts. It is a compilation of reflections written by mothers of babies/children with Down Syndrome…63 of them, in fact. There were several websites provided throughout the book…some of them more informational websites, some blogs, etc. I spent some time on these websites last night/today. So many stories (most all) in the book/on the sites were uplifting, inspiring…even comforting. Parts of some stories were disappointing. Disappointing in the fact that, even today (the book was published in 2007—not too long ago!), there is still so much negativity surrounding the diagnosis of Down Syndrome. Many of the mothers writing their reflections had learned their baby had Down Syndrome prenatally. I can’t tell you how many of them were told (sometimes pushed) by their doctors that there was still time to abort the baby. Some of these mothers/parents went through periods of complete agony trying to decide whether to continue the pregnancy or terminate it…due to the negative “outlook” they were being given. I am happy to say that none of the women writing for this book decided to have an abortion (and EVERY ONE of them writes about the complete joy the child has brought to their life). But the pain of that time…and the guilt that many still feel for even considering aborting the pregnancy is still with them…much because they didn’t have people surrounding them to help them see that the baby growing inside them was a BABY, not a diagnosis. There were many mothers who wrote about the sadness the enveloped them when they delivered their babies. They didn’t get to experience the elation, joy, etc. that goes along with having a baby…there weren’t any “Congrats” or gifts or balloons or flowers. “I’m so sorry” comments and comments about all the challenges ahead took over. As a result of this, one mother in the book did a “study”, asking parents of children with Down Syndrome, about responses from others when they announced their child had DS. She compiled a list of “What to Say” and “What NOT to Say” when a friend/neighbor/someone tells you their child has Down Syndrome.

All that kept coming to mind for me throughout reading the book and looking at the websites is how BLESSED we are…We have been so supported, encouraged…CRADLED throughout this. Even in our darkest times—when learning about the diagnosis, trying to understand all it encompassed, and so on—we have been given hope and encouragement…

· Our doctors and nurses focused so much on all that Lauryn will be able to do. They did not sugar-coat the challenging aspects of having a child with Down Syndrome, but the focus was on what Lauryn will accomplish and how we help her do that. In those early hours/days, they helped us see that we had a BABY with Down Syndrome, not a “Down Syndrome Baby”.

· Our family, friends, neighbors, community have welcomed Lauryn with open arms. We have received so many words of encouragement, love, support, care…and CONGRATULATIONS! People can’t wait to meet her and are honored to be included in her life. She draws people to her already…helping us see even more the true miracle she is (it also has been a wonderful perspective in reminding us what miracles our other four children are, as well!).

To say we haven’t experienced fear or anxiety about what lies ahead for Lauryn/our family would be a lie. But we have not experienced the negativity that so many of the mothers in Gifts experienced. We have received responses from others that are on the “WHAT TO SAY” list, helping us to focus on all the wonderful things about Lauryn…to enjoy these precious baby moments with her…and to be excited about her future and the future of our family. Sometimes we feel like the extra chromosome Lauryn has gives her some kind of superhero capabilities (hence her Buddy Walk Team Name—“Little Lauryn’s League of Awesomeness”). We are so BLESSED.

Well…our crazy schedules are going to get crazier here very soon! “They” gave us some time to settle in, and now are ready to STIR THINGS UP. In addition to the typical weight checks and newborn appointments we have for Lauryn in the next couple weeks (3 appointments), we have:

· …First Steps evaluation this morning. They will evaluate her needs and whether she qualifies for services…what services, etc. We then have an appointment on the 14th to create a “Family Plan” for her therapy (assuming she qualifies). Therapy will start soon after that.

· … an appointment with an eye specialist at Riley on the 12th. It is routine to check all pre-term baby’s eyes, plus having a third 21st chromosome makes one more prone to eye problems. They do/did some of these eye appointments at the hospital, others they do as “out-patients”. I know the nurses didn’t like having to help with these checks (apparently they pry the baby’s eyes open :( )…I’m hoping (and praying) her appointment might not involve all that appointments in the hospital involved…

· … an appointment at the Riley Down Syndrome Clinic on the 18th. We are so BLESSED to have Riley just “right down the road”…and to be able to take Lauryn to a place where doctors who specialize in Down Syndrome can help in her care. Between her pediatrician (who happens to be the wife of my OB/GYN) and doctors/staff at Riley, we are all already on the road to receiving the best possible medical care for her diagnosis, as well as the most up-to-date research on development, therapies, etc.

Intermixed with these appointments are my own doctor/dentist appointments, the other 4 kids’ doctor/dentist/allergist appointments…etc. I’m thinking maybe I need some of that 21st chromosome enhanced superhero power!

I’ll end this journal with a few excerpts from one of the reflections in Gifts. This reflection is titled Where There’s A Will, There’s A Way” (the mother in this reflection has a little boy with Down Syndrome named Will).

“As for me, I know I am not ‘special,’ despite what many people say. I have often been told that God picked me to be Will’s mother because of some extraordinary abilities I must have……I know that I am the same as everyone else; I think that if I was ‘chosen,’ it must have been because I needed to be fixed……Will has taught me that I possess gifts that I never knew were there. He has shown me how deeply I can love and has revealed a part of me that can delight and marvel at even the smallest things. If I could give a message to a mother with a prenatal diagnosis, I would say this: You are greater than you could ever imagine. Your child is waiting to give you a very precious gift: The gift of yourself.”

Thank you all for encouraging me, allowing me, inspiring me and helping me to find truth in these words…I am BLESSED BEYOND MEASURE.

Love,

Jen

Tuesday, October 12, 2010 11:15 AM, CDT

Holland vs. Italy...

Holland Happiness
* Can you believe Lauryn is 7 WEEKS and 3 days?!? It doesn't seem possible. I don't know if it's because she spent half of her life thus far in NICU--and didn't seem "totally ours" yet or what...but she still seems so "new"! :)
* Lauryn is up to 6 pounds 11 ounces! She got an "A+" on her weight gain last Friday! :) She certainly looks bigger to us, but she's still a little "peanut"!
* We have her ophthomalogist appointment at Riley today. I'm nervous about it...I'm hoping it won't be like the appointments in the hospital were described to me...I don't know what to expect. If she has to go through that, it makes more sense to me to have done it in the NICU when she was smaller and "less responsive", you know (and when I didn't have to watch it!)? I'll try to update how things go...
* First Steps comes on Thursday to come up with our Family Plan. First Steps is going through some major changes that will affect the service providers--especially the independent providers. We will see how this is going to affect Lauryn's therapy...
* We are gearing up for the Buddy Walk! I am overwhelmed (once again) with the amount of support we've received for this event (with financial donations and walkers)! It's awesome! My brother just got back from a vacation in California and should be working on t-shirt details as we speak...:) More info very soon for those interested!l
* Lauryn is starting to really look at things (seems her eyes are fine to me! Maybe we can just cancel the appt...? HA.). She is starting to track a little and will gaze at things for longer periods. We are waiting for that first little smile (that's not in her sleep)! :)

Missing Italy a Little...
* I officially put away the breast pump yesterday. I am not finding it possible to pump anymore. Each day I start out with the intention to do it, and don't get it done. Seeing it sitting there makes me feel like I "failed"...and guilty. I've had to come to terms with the fact that I just can't get it all done! Not that Lauryn isn't worth the time (OH, she is!!!), but it takes an hour plus to nurse, bottle, pump for EACH feeding. That's 8-9 hours each day. With 4 other kiddos, it's not working. The other four nursed so easily. I got pretty good at discreetly nursing them wherever I was (or at least I think I did...or maybe there were a lot of people talking about that Mom nursing in public!)...it's not that way with Lauryn. Something else I've had to come to terms with (not quite there, but close) is that it is OKAY!!!! :(
* Lauryn is nursing a little before most feedings...just for a few minutes. She doesn't get enough and takes a full bottle after...so I'm not sure how much longer my milk supply will last. When she's REALLY hungry she gets irritated and doesn't want to nurse--"Give me the bottle, already!" is obviously what she's telling me...

BUT...HOLLAND has "Tulips"--Even though Lauryn's nursing days are short-lived (likely), she is doing fantastic with her bottle feedings! We have found that there are some nice things about "Feeding in Holland" (the expense is NOT one of them!). John is really enjoying getting to feed Lauryn. It's a special bonding time he didn't get to experience with the other kids. I enjoy watching him feed her...and eventually will enjoy watching Tyler, I'm sure--once she gets a little bigger. With her looking at so many more things, she will often look at me with her big blue eyes while she's taking her bottle...melts my heart.

My camera is broken!!!! I'm not saying any names, but we are pretty certain someone with an "M" or a "B" at the beginning of her/his name is the culprit. Jonathan, my brother, is trying to fix it, but not sure that's going to happen. If not, I'll be investing in a new camera very soon (Happy Birthday to Me!...and Merry Christmas...and Happy Valentine's Day...and Happy Anniversary!) because I'm NOT liking not having any new pictures to post!!!

As always, thank you all for your ongoing love and support! More soon!

Love,
Jen

Saturday, October 16, 2010 4:10 PM, CDT

BUSY, BUSY...It was a busy week...with a somewhat relaxing weekend to gear up for another crazy week next week! :) "Time" just refuses to slow down, no matter how much I try to change that!!!

Lauryn's eye appointment went well. It was like they described, unfortunately...but it was quick (I didn't watch)...and she got an A+! My dear friend, Janet, went with me to help with the kids (Ben and Maddie)--who actually gave me more stress than Lauryn (God love 'em). While we were waiting (for 30 minutes while they gave Lauryn 3 sets of dilating drops a few minutes apart), there was a little girl in an exam room getting checked. We knew she was getting the same type of exam, as she was just screaming (for some reason they left the door to the room open) :(...when he was done, the doctor asked if she was able to "go home after her chemotherapy or if she had to stay"...he went on to say that the spot they were concerned about was still active...When the family walked out, the little girl looked to be about 8 or 9 months...heartbreaking. Every time I go to Riley (I say "every time" VERY loosely, as I've only had to go there for my children a handful of times), I experience something that makes me realize how blessed we are! Lauryn has to go back in 6 months for another check (we are just counting down the days to that one!), but they have an office about 2 minutes from our house, which we will go to rather than Riley...Hopefully things will continue to go well in that regard.

First Steps came on Thursday and we went through her evaluation, set some goals and chose a therapist. I actually know her therapist and am really grateful and excited that Lauryn will be getting such wonderful support/help! She will be starting out with OT one time/week...that will begin in a couple weeks.

Friday we had dentist appointments for the four "bigger" kids. That's ALWAYS an experience. Poor Ben and Maddie (or should I say, poor Dr. McKown and her staff?)...I think people in the surrounding towns likely heard them scream. Little Lauryn slept through the entire thing...Once again, we are truly blessed as our dentist (Dr. Carol McKown...the BEST ever!!!) works closely with Riley, is actually on the Board for DS Indiana, has worked for years with children with special needs, etc. I was "early" pregnant the last time we saw her and she had forgotten we were expecting...she pretty much fell on the floor when we walked in with a FIFTH CHILD!!! :)

Well...I've officially stopped nursing. It's okay and I'm okay. :) While I am sad that I wasn't able to experience that with Lauryn very much/for a longer period, I am still truly thankful that she is doing SO WELL with feedings/the bottle. I've had so much support and encouragement--both with "pep talks" and with giving me permission to stop (THANK YOU--why us mothers sometimes need 'permission' for things, I don't know--but it has helped so much with any "Mommy Guilt" I've had!). Lauryn is becoming a little "piggy"!!!!! I can't wait to see how much she weighs at her next "regular" doctor's appointment (which is Thursday for her 2 month!!!) She has graduated to the "NB" diapers from preemie...has grown out of her preemie clothes, and is starting to fill out her newborn clothes (they are far from tight on her, but she isn't swimming in them anymore!) :)

We have several appointments coming up this week...as well as LOTS of activities next weekend. We have her appointment at the Riley Down Syndrome Clinic on Monday. Tuesday we head up to Carmel to meet with a speech pathologist that was recommended to us by Dr. Hertz (her NICU doctor). She has her 2 month appointment on Thursday with Dr. Wagner (and probably a couple shots :( ). Then Saturday is the BUDDY WALK! I so hope we have great weather...if it's like it's been this weekend, it will be perfect!

BUDDY WALK INFO:
* If you are planning on walking with us, let us know. We will plan to meet somewhere specific before the walk starts...not quite sure where yet, but I will let you know!
* We are putting in an order for "team" t-shirts on Monday. Pictures of the t-shirts are in the "Photos" section...they will likely run around $12. Let me know asap if you are interested and we'll make sure to get one ordered for you. We will pay for the shirts, then people can pay us back when they see us. :)

As always...how do we say "thank you" enough to everyone? Know that every little thing you all do...every prayer, every note, every meal, every call, EVERYTHING is so very much appreciated. We love you!

Love,
Jen

Thursday, October 21, 2010 11:28 PM, CDT

Lauryn is 2 MONTHS!!! It’s truly hard to believe! For some reason, 2 months doesn’t even seem as surprising as 9 WEEKS, which she will be on Saturday! Time flies when you’re having fun!

Things are going well…some days are “crazier” than others. :) The last couple weeks have been filled with appointments. After her appointment next Wednesday, things seem to slow down, thankfully. She’s been examined, poked and prodded enough for awhile.

We had an appointment with a developmental pediatrician at Riley on Monday. That appointment went well. The doctor was great, and we learned a lot. It was a little overwhelming, as the doctor kept saying, “We’ll need to keep an eye on…feeding…weight gain…reflux…hearing…thyroid…eyes…hips…”, etc.! Riley has all the “schedules” for all the “checks” she’ll need (as children with Down Syndrome can be more susceptible to various things such as ear infections/hearing trouble, thyroid problems, trouble feeding, etc.) and is able to help us keep on top of things so that we don’t “miss” anything. I just keep reminding myself of that when I start thinking how all this information sometimes just gives me more to worry about! I also keep going back to a conversation I had with Dr. Hertz in the NICU with him telling John and me that while there are a number of things that can “happen” with a child with Down Syndrome, most of these don’t come to truth…AND a number of things can “happen” with ANY child. Okay, so that doesn’t always make me relax, as then I think, “Well…now I have all that to worry about TIMES FIVE!!!!!!!” :)Anyway, Dr. Stanley (Riley doctor) was pleased with her progress. She said everything “looks great”. We talked about feeding quite a bit and Dr. Stanley did suggest that we try going back “down” to a “slow flow” bottle nipple, as Lauryn does choke at times, and “dribbles” quite a bit. I finally hunted down some preemie nipples for our bottles at Babies ‘R Us…and this has helped A LOT. She did go ahead and schedule a feeding study for Lauryn, but said we can cancel it if we feel like she’s doing okay/not choking as much, etc. (I don’t think we’ll need it!). We’ve also been a little concerned with reflux (especially since all four of the others had it)…Lauryn has shown some signs of reflux, so Dr. Stanley felt we should just start her on Zantac (which greatly helped our other kids, but is YUCKY!!!). Everything else looked great—we’ll go back in 3 months for another check. Once again, as we walked around Riley on Monday, I just counted my blessings. Even though seeing so many sick children—some who are obviously going through chemo, others who have severe physical handicaps/limitations, and so on—is heart-wrenching, I have found that these families (and doctors/nurses) are so inspiring. Every child I see has a smile on his/her face…parents who are going through SO much watching their children “hurt” have smiles on their faces. It is a POSITIVE atmosphere…one of hope, strength, courage and promise (when it could be justifiably the opposite). The children and families that I’ve seen just in passing there have touched and inspired me.

Lauryn had her two month check-up today and “passed” with flying colors! She had to get 3 shots—oh, she cried—and THE LIP! :( She is up to 7 pounds 3 ½ ounces! While she is only in the 1st %ile for weight (and the 0 %ile for length—19 ½ in and head circumference), she has grown a bunch since her last visit—now on the higher end of the range of weight gain they like to see! She’s like a “real” newborn now. Her adjusted age is 3 weeks tomorrow. The doctors keep reminding us of that…as we have to keep that in mind when thinking about her growth physically and developmentally. For example, when we said to Dr. Stanley at Riley, “She is just starting to track objects” she reminded us that she really should “just now” be doing that given her adjusted age. When she hasn’t quite reached a “milestone” yet, it’s sometimes hard to know if it’s from prematurity or from Down Syndrome. I guess it doesn’t really matter—she is going to reach her milestones…in her own time. And we are going to celebrate each little one, regardless!

Developmentally, she is starting to track objects now…will grasp (a little) when something is placed in her hand—especially a finger!...has “discovered” a new sound or two…is trying to lift her head more…does NOT like to be wet/dirty in the least (and will tell us about it)…and LOVES, LOVES, LOVES to be held (and will tell us when we need to pick her up again). She makes the funniest (and cutest!) expressions…we often get the sense that she is going to be a little “firecracker”. :)

The Buddy Walk is only two days away! I’m really excited for Saturday. We have at least 20 walkers on our team…Just our team alone has been able to raise over $1200 for Down Syndrome Indiana. It’s just SOOOOO awesome! I’ve said it over and over, but can’t say it enough—“WE ARE SO BLESSED!”.

October is Down Syndrome awareness month…there have been a number of links and such shared on Facebook, through emails, YouTube, etc. this month. I’ve ALWAYS loved inspiring stories (especially involving children and ones with special needs) such as the ones being shared, but these recent ones have especially touched my heart…there are a couple that have forever become my “favorites”. I’ve shared them on Facebook (along with many others), but—if you aren’t on Facebook, these are both worth watching…

1) Zach Beckman Scores a Touchdown—starring a hero—and made possible by heroes from my hometown of Jasper, Indiana…http://www.youtube.com/watch?v=RaQeNop7Y-c

2) God’s Plan…I recently learned about Lee-Ellen (Thanks, Beth and Dad!!!!)…her CD is titled “Falling Up” and is filled with wonderful, inspiring songs…several about her journey with her young son who has Down Syndrome. This is the video for “God’s Plan”—her little guy is adorable—and will capture your heart instantly! http://www.youtube.com/watch?v=yrFKinTsYkw

I’ll end with the words to Lee-Ellen’s song, “God’s Plan”, as well as another song off her CD, “New Dreams.” These are my new theme songs…they are beautiful…my kids have learned most of the words now, too (maybe we should make a YouTube video of us belting out these songs in the car). When I start to feel anxious or scared about “what’s to come” with Lauryn, I turn on these songs…

God’s Plan (When I’m singing it, I put in “she” instead of “he”)

From the moment you took your first breath, I knew you had a special job to do.

I could tell by the crease in your hand, and your eyes (oh, they told a story too (yeah).

I could see the look on their faces, they thought something was wrong.

But they didn’t see what I saw before me—a perfect baby’d been born.

CHORUS:

So don’t tell me what ya think he won’t do! You gotta open your eyes to a better world.

Give him a chance, and he’ll do like the others. Given some time, he’ll move right along.

Well, I’m not saying it’s gonna be easy—you’ve got to understand.

I think he was sent here to teach us a lesson. Don’t mess with God’s plan…He’s part of the plan.

Now you’re growing up much too quickly…trying hard to keep the pace, I know it’s true.

Well, your steps are a little slower, and your words, (oh) they take their time too (yeah).

You were born with a love that is so pure, one touch and it shows.

You are an angel sent here from Heaven, and I’m sure that you know.

CHORUS

Since the day you came into my life, I found the meaning of believe.

And I know that miracles are real, every time you smile, walk or speak.

And I know the meaning of believe. Ya gotta open your eyes to a better world yeah, yeah…

CHORUS

New Dreams

There was a time, when I thought our dream was over.

There was a day, when I thought the blue skies faded away.

I just couldn’t see beyond my fear,but then your eyes showed me the way.

And now I see a future with a chance…

CHORUS:

And I will dream new dreams with you.

One day at a time…I know they’ll all come true.

You taught me in your life time, more than I ever knew.

And I will dream new dreams with you.

Now I see a world and its wide open before us.

No look’n back, cause we’ve come too far to settle for that.

The answers aren’t always clear. But, then your eyes show me the way.

And now I see a future with a chance.

CHORUS

You have made me understand. There’s nothing you won’t do.

Life unfolds in its own time…and baby, so will you!

CHORUS

Much love to you all! Say some prayers for NO rain on Saturday!!!!!!!!

Love,

Jen

Thursday, October 28, 2010 9:25 PM, CDT

JUST AN UPDATE…It’s taken me forever to update, I know!!! I’m having trouble keeping up!

BUDDY WALK—was AWESOME! We had great weather (just a little sprinkle or two, but the temperature was perfect). What an inspiring, uplifting, wonderful day. I had all intentions to take all kinds of pictures and ended up taking very few. :( Guess I was all caught up in the whole experience. I didn’t even get a picture of our whole team OR our family! Grrrr. I’m thinking about getting our family pictures here soon in our t-shirts, so that will have to suffice for this year. :) Some highlights of the day (there were many):

· Having my family there to experience this with us, including my mom (dad was on 24 hour call), my brother, Michael and sister-in-law, Stephani, my brother, Jonathan (and his girlfriend, Rachel), (Matt was also on call in Kansas), and relatives from Bloomington (my dad’s cousin and his wife—altho I kinda think of them as my aunt and uncle)

· Having dear friends there to support our first Buddy Walk—the Rippy’s, the Strange’s, and the Binkley-Murphy’s (including Beth who walked almost the ENTIRE thing after having a hip replacement 3 weeks prior…walking with a walker!...Beth’s oldest daughter was in my very first 2nd grade classroom). We know there were many, many of you there “in spirit”—we could feel your support that day as we walked!

· Hearing a young woman with Down Syndrome sing the National Anthem prior to starting the walk

· Seeing the pure happiness of children and adults with Down Syndrome—surrounded by so many wonderful families—lots of smiles and laughter and people just enjoying being together

· Feeling the complete support of Down Syndrome Indiana—and feeling so blessed that we are able to be involved with this group who provides so much to families blessed to have a member with Down Syndrome!

We celebrated the Buddy Walk and my 40th birthday afterwards at our house. It was so nice to just “hang out” with family and some friends. And I didn’t get even one “gag” gift! :) I keep hearing that “40 is the new 20”…I’m counting on that!

We had an appointment on Tuesday with a speech pathologist that was recommended to us by Dr. Hertz in NICU (supposed to go last week, but had to reschedule). That was super! I’m learning so much (sometimes I’m on overload, but that’s okay). She gave us lots of information, some little activities to do with Lauryn, etc. We’ll plan to see her in another month or two when Lauryn is doing a little more and ready for some new things.

We had our first First Steps therapy session tonight with “Miss Melissa.” AWESOME! Again…learning so much. Lauryn did great—she’s completely konked out now! We have a lot to keep working on, but we are excited to “get to work” (on more specific things)! We have several little helpers that will be keeping me on my toes and making sure we are doing our exercises each day…Madelyn watched every move and I’m sure is already planning how she is going to provide Lauryn with her own workouts!

The older kids are on Fall Break this week. We had a relaxing day today, not doing much but watching TV and playing video games (whew, I’m “MOM OF THE YEAR” today!). The older boys did get a little football in outside, so it wasn’t all “turn your brain to mush” activities all day long! John’s twin brother and his family are coming up tomorrow and staying until Saturday. It will be fun to spend some time with them as we haven’t seen them in awhile. Their oldest daughter is John’s Goddaughter and she is Lauryn’s Godmother (Tyler is Lauryn’s Godfather). Lauryn is going to get lots of attention and snuggle time from Anna over the next two days!!!

Next week is another big week, as Lauryn has First Steps and a Feeding Study at Riley. She is doing much better on the slower flow nipple…but still occasionally chokes/gags. We have also learned that there can be feeding issues with the child not showing any signs at all. This could cause problems with respiratory infection and such, which we want to avoid. So, I think we are just going to do it as a precaution. It may not be super “fun” (it doesn’t hurt—just involves drinking maybe a “yucky” drink and possibly being “manipulated around” to get some x-rays), but will give us some solid information on how she is doing and if anything needs to be done to help her with feeding.

We also were approved for the RSV shots. She’ll receive her first one on November 9th. With her getting bigger now—not seeming quite so little and fragile—I’m not as paranoid about getting her out a bit. She’s definitely stronger…yet I still know there is an increased risk of infection with her prematurity, as well as her having Down Syndrome. So, I’m glad she will have another “boost” to her immune system that may help keep her healthy this winter.

Love you all!

Jen

Sunday, October 31, 2010 11:30 PM, CDT

Our adorable little punkin'

Happy Halloween! Lauryn celebrated her first Halloween! What perfect, fall weather (although by the end it was downright cold!!!!)! Lauryn was a little “pumpkin”…she slept right through the initial “commotion”…but is now FULL of energy…you’d think she’d eaten a bag of candy herself! We had a great night…complete with a bonfire, chili, hot dogs, cider…and wonderful company—our neighbors and family…Maddie and Claire (our neighbor’s little girl) were NOT having the scary costumes…they lasted all of 5 minutes outside before melting down from a couple ghosts and heading inside for the night. They may have had the perfect “plan”…stay inside where it’s warm…play baby dolls…snuggle with Claire’s Grandma…but still reap the benefits when everyone came back with their bags of candy!!!

We had a nice visit with John’s brother and family over the weekend. We haven’t seen them in awhile, so it was great to get to just hang out and relax with them. All the kids played hard…between that and Halloween, they are exhausted!!! I have a feeling tomorrow morning (and likely after school/evening) may be a little “ugly.”

Tyler’s 5th grade team had their 2nd playoff game today. They were the only team left from St. Jude in the playoffs. We had an undefeated season and had the potential to get to the championships. Unfortunately (for the 3rd year in a row), things didn’t click today and we lost the game. :( What a bummer!!! Luckily, trick-or-treating was a nice distraction. They had a wonderful season. I am surprised at how much I really like football…it has been so fun watching this team grow and improve. It still makes me pretty nervous at times, but it’s such a true TEAM sport. Tyler loves it. Now we are on to basketball (which he also loves)…

We are gearing up for another busy week…OT, basketball tryouts, feeding study, haircuts, preschool, Grandparents’ Day, Book Fair, etc.! This Saturday is a Pet Vaccination Clinic at our preschool. It’s a benefit for Brian, our friend who just went through a bone marrow transplant. If you have any pets (cats or dogs) that need vaccines, the prices are VERY reasonable (from $5 to $30)! All proceeds will go to a fund for Brian to help with the continuing medical costs incurred from his transplant and recovery. The clinic will be held at Edgewood Preschool Cooperative/Faith United Church of Christ at 4040 East Thompson Road (46237) from 1:00 to 4:00 pm. Overall, Brian is doing well…it is such a difficult road…the donor’s cells are taking over, which is fantastic! However, he has had some complications with infections and has been in the hospital for the last 2 weeks. He is fighting SOOOO hard…his wife, Connie, has been right by his side. They are an amazing couple with 2 wonderful, young boys. If you can make it out to the clinic to help support them (and get “cheap”-er vaccines for your pets…WIN-WIN), that’s wonderful!

Well, I don’t have much more to report…the holiday season is among us. Do you realize it is only about 8 weeks until Christmas?!?! Before I had kids, that was forever…now—I need to get on the ball!!!! I’m trying to make an effort to slow down and ENJOY this holiday season…savoring the special times and activities, rather than speeding through each “event.” We have so incredibly much to be thankful for this season…

More soon,

Jen

P.S. I realized I forgot to mention a special person when describing the support and love we received at the Buddy Walk (and beyond)…my brother, Matt’s, girlfriend, Allison! She was also “on call” in KC…but was there in spirit with us!

Monday, November 22, 2010 1:10 AM, CST

IT’S BEEN AWHILE…

Craziness! It’s been awhile since I’ve updated…due to craziness at our house! Sometimes I can’t even explain specifically why it’s so “crazy”…guess it’s just our daily life with five kids!!!

I really love this time of year…cool temperatures, apple cider, bonfires, and so on. BUT…along with it seems to come SICK KIDS! We’ve had the nasty cold, cough, sore throat, runny nose, fever, etc. going through our house for about the past month. William is the only one of the kids that didn’t get it (knock on wood)…poor Maddie and Ben were MISERABLE, and our Little Lauryn had her first double ear infection. Everyone seems to be on the mend and feeling much better now…hopefully it will stay that way for awhile!

Funny story…unfortunately, Lauryn’s antibiotic gave her a pretty nasty case of diarrhea. Last Thursday night Tyler, Maddie, Lauryn and I got a bite to eat and headed to Great Clips to get Tyler’s hair cut. Lauryn had “filled her britches” on the short walk from Hong Kong to Great Clips. Many of you know that one of my sort of “trademarks” is changing my baby’s diapers on my lap. I’ve done it this way for all five of my kiddos (when necessary), and haven’t had any accidents…until last Thursday! I THOUGHT Lauryn was finished with her business…I sat down in a chair a couple seats down from the shelves of product. I asked Tyler to sit next to me to block Lauryn as I changed her. I start changing Lauryn’s diaper, and as I reach for the clean diaper, she informs me that she is NOT done by projectile pooping EVERYWHERE…all down my shirt/arm (as I was reaching…the timing couldn’t have been any more perfect to get pooped on), on the seat, etc. Somehow she missed Tyler. Tyler and I just stared at each other for a few seconds…OH MY GOSH—neither of us knew quite what to do! Typically in a similar situation (with MUCH LESS poop going around), Tyler would be having a fit and running as fast as he could in the opposite direction. I was so proud of him because he remained calm…I think he was in shock! I sent him out to the car to get the BIG TUB of wipes. As he was doing that, Lauryn STILL wasn’t finished, and continues to poop—I THOUGHT I had her covered, but not so much…as there was now a puddle of diarrhea in my lap. By the grace of God, everyone else in Great Clips (there weren’t that many people thank goodness) didn’t seem to notice what was going on…or they pretended not to notice. Somehow I was able to strip Lauryn down, wrap her up in an extra blanket we had in the diaper bag, put her in her carseat, use an entire tub of wipes (I had to send Tyler out for the “back-up wipes” in the car) to wipe myself off and get Lauryn in another outfit while Tyler got his hair cut. As I was gathering stuff up, I noticed a little poop on the seat next to me…as I’m wiping that up I notice poop on the shelves and 4-5 bottles of product!!!! Can you imagine picking up a bottle of gel to see diarrhea on it?!?! I wiped and wiped those off…still with no one in Great Clips seeming to notice what was going on…who knows, after we left they were probably disinfecting the place and cursing our name!!!! Definitely one for the books…

We’ve had several doctor’s visits in the last few weeks, including our visit to Riley for a Feeding Study…and an echocardiogram. Lauryn had an echo in the NICU the day after she was born. However, it appears the report was never submitted or lost. NO ONE has the report—Community North, Riley, etc. Her Riley doctor wanted to look over that report, as 60% of children with Down Syndrome have heart issues. It wasn’t something that she (Riley doctor) felt comfortable just assuming was okay…SOOOO, off we went for another one. Fortunately, everything appears normal (again) and no follow-up with the cardiologist is needed. The Feeding Study was easier than I envisioned…and really pretty interesting! Lauryn couldn’t eat for at least 4 hours prior…after her echo, she was starting to stir and get pretty hungry. John walked her around and got her to sleep…we figured she would wake up starving for the feeding study when time…they bundled her up in a nice warm blanket and strapped her in the little feeding study seat (like a car seat), and she was ZONKED!!! I had to strip her down and tickle her to wake her up! They tried several different bottle nipples and consistencies (they thicken the formula with rice cereal to see if that helps slow it down). John and I were a little frustrated as we were not told to bring the bottles/nipples that we have been using at home. We had been using the Dr. Brown bottles…with the #1 nipple. After our first visit to Dr. Stanley at Riley, I purchased some Dr. Brown preemie nipples to see if that would help with the choking Lauryn sometimes had (which it seemed to help). I only took the preemie nipples with us. Of course, they don’t use Dr. Brown bottles at the hospital, so they were only able to test with the preemie nipple…when they thickened the formula with that, it wasn’t functional. While Lauryn did not aspirate during the feeding study (which is good!), she was having penetration…where the fluid would start to go down her airway and come back out when she swallowed. She was also having “pooling”—especially when she got tired, where the fluid would start to puddle (as she hadn’t swallowed), causing a late swallow. They were pleased that they didn’t see any aspiration, but a little concerned about the penetration, as it was pretty deep. There is a chance that Lauryn could be having some silent aspiration, as well. The frustrating part was that they weren’t able to come up with a real great solution in which nipple was best, what thickness was best, etc. Using the Dr. Brown preemie nipple she was having penetration 34% of the time. With the slowest flow hospital nipple, she was having penetration 17% of the time. I wish we had known to bring the #1 nipple, as I think this would have worked well with thickened formula. But, since we didn’t know that for sure, the recommendation was to use the slowest flow nipple for the next few weeks and check back in with them for the next step. So…that’s what we’ve been doing (although we can’t use our Dr. Brown bottles—at least with the “insides”), and things SEEM to be going well. She’s gaining weight , eating well, etc.

Lauryn got her first RSV vaccine a couple weeks ago. They weighed her (in her birthday suit!) and she weighs 8 pounds now! Woo hoo! She’s a little more than that by now…she will have another shot in December, and then we will reassess, as our deductible starts over and we will be paying out of pocket. We got the insurance statement today and the first shot’s total cost was $3000!!!!!!! I’m not sure who covers what from that cost/how much we would be expected to pay , as we were told the shots would cost around $1500 for us. They strongly encourage us to get them for her, but certainly understand if we cannot do it financially. Fortunately, it looks like there are a couple avenues we can take to try to get some of the costs covered, specifically one that helps folks that have insurance with a high deductible (that’s us!).

We are in full swing with Lauryn’s therapy. She is doing EXTREMELY well! I can’t believe how much stronger she is already…and how much better she is doing with head control and tracking in a short time. In the beginning I was so excited thinking her therapy sessions would be so “fun”…a time for us to bond…do fun activities…that it would be fun for her, too! We have an AWESOME therapist (OT) who is helping Lauryn/us so much…but, “FUN” is not the word I’d use to describe it…for Lauryn, anyway. She pretty much cries/fusses through much of the session. Melissa, her OT, describes it as Lauryn is running a marathon. She has to work SO hard to do the things we are doing with her…it’s tough work. At first glance, the exercises she does don’t seem like they would take much energy, but for Lauryn, they DO. Last week the light bulb went off in that I finally internalized what it means when people (doctors, therapists, etc.) tell us that Lauryn will meet her milestones, she will just have to work harder to do it. What comes so naturally and seemingly easily for a typical newborn/infant is work for a baby with Down Syndrome. Miss Melissa has been wonderful in helping us learn how to incorporate strategies for helping Lauryn grow/develop into our everyday life—not just specific exercise times. For example, when we go to pick Lauryn up, we often will talk to her on the opposite side she is looking so that she has to turn her head to us. Or when holding her, holding her in a position that she has to work a little to see things around her, getting her head up and working on head control. We certainly get in plenty of cuddle time, but in order to help Lauryn the most, we have to think about so many more things all the time. Like I said, though, she is doing GREAT! More and more she WANTS to be looking around—she loves to see what’s going on. She totally wants to see what the other kids are doing. Last night, for example, she was wide awake at dinner time…she was alert, playing, etc. Typically, she will fall asleep after dinner for awhile. Last night she wanted to party!!! She was UP—she wanted to be walked around facing outward (which was a great position to help her to use those neck muscles)—until after 11 pm!!! She then slept for 6 HOURS! Mommy loved it!!

Today was Lauryn’s baptism. It was such a special day!!! We were surrounded by so many family and friends. There were family and friends who weren’t able to be there, but we felt their love from miles away! The ceremony was beautiful…Father Steve does a fabulous job. I love watching all the kids around the baptismal font, feeling so comfortable and relaxed while getting to witness baptism. Lauryn’s Godparents—Tyler and our niece, Anna—were dressed “to the nines”. They were so excited—I just love it that they get to be Lauryn’s Godparents…such a “win-win”, as they have so much to teach Lauryn about the Catholic faith…and Lauryn has so much to teach them about life. They both feel so special and honored to be Lauryn’s Godparents—I know they are going to love her and guide her in so many wonderful ways. Madelyn looked beautiful in her pretty dress and sparkly shoes (with her bright pink Dora purse—her accessories didn’t really match, but oh well!!!). Will and Ben looked especially handsome, but pretty much peeled off their “dressed up clothes” as we got out of church. John looked super handsome—I made him wear a tie, which he wasn’t thrilled about…We came back to celebrate the special day at our house with good food and great company. Lauryn received a ton of love…lots of cuddling…and many beautiful gifts. We also celebrated William’s 7th birthday (was on the 16th)….there was a football cake mixed in with all the pink and white decorations, etc. Perfect…

Handsome Godfather...

Lauryn and her wonderful Godparents!!!

Lauryn wore the same baptismal gown that I wore when I was baptized...about 40 years earlier! :)

Thanksgiving is this Thursday! Christmas is 5 WEEKS away! We will be celebrating Thanksgiving with John’s family. I’m looking forward to seeing all of his siblings and spending time with all the nieces and nephews. It’s always very high energy with 16 grandchildren running around! Tyler and I get to go see Cats with my dad on Sunday after Thanksgiving. I’m really looking forward to that, as I’ve never seen it before…plus, I love to spend some quality “alone” time with Dad (and Tyler!).

That’s all I know for the moment. I do have a couple prayer requests…I honestly believe we have the best “pray-ers” around.

· Our friend, Brian, got to come home yesterday after 5 plus weeks in the hospital. Overall, he is doing well and the bone marrow transplant seems to be working. He has had (and still has) several infections which have caused a lot of discomfort and pain. His spirits could be boosted a bit…he still has a long road to recovery ahead.

· My aunt, Carol, has been battling lung cancer, which turned into brain cancer, for the past three years. She is having a difficult time right now, as there is much swelling occurring around the original tumor in her brain, which is causing many complications and concern. Their family has been through SO much in the past few years…Carol and Frank (my uncle) have been amazing through the ups and downs of cancer…they are inspiring and a testament to true love and marriage.

I hope everyone has a wonderful Thanksgiving!!! Our family has SO much to be thankful for…a list of blessings a mile long …with all of you being at the top of that list!

Love,

Jen

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