NICU Day 120 ~ (April 17th)

~Enjoying time with Daddy~

Today was a fairly uneventful and boring day as NICU days go, and we are grateful for it.  Noelle has not progressed quite as fast as we thought she would; but she is doing well and making good strides, and we would rather she take them more slowly and do well rather than rush the healing process and consequently have a setback at a later time.  She still was not allowed to eat today; however, by the end of the evening, her bowel sounds were returning which means that things are "waking up" and beginning to work again.  Hopefully this means that we can start feeding her again tomorrow, and we're praying that she tolerates her feeds well.  Since she is currently in the NICU, the surgeon has decided to go ahead and proceed with the Hirschsprung biopsy and put that behind us.  He would have performed it during the surgery she had Saturday night; but pathology does not work on the weekends, and they have to perform some immediate tests on the sample.  Lord willing, in a few weeks we will have an answer to some of our questions.  We were told today that this biopsy is not 100% conclusive and could be repeated again at a later time if issues continue to arise, but we will simply keep taking the information as we receive it and handle it accordingly under the current circumstances. Noelle also weaned well on her oxygen today and my hopes are up that she will be able to come off of it completely before coming home.  If not, then we are happy to keep her on it as long as is necessary, but it would be wonderful for her to come home oxygen free {at least when she is awake!  Some babies need it for a period of time only for sleeping}.  I had the opportunity to hold her for a couple of hours which was a sweet relief after empty arms for the past few days!!  Thank you so much for praying specifically for Noelle and her healing as she seems to be doing well with the pain overall unless moved around too much.  We thank God for another good day and look forward to reporting more progress tomorrow.

NICU Day 96 ~ (March 12th)

Today was all about cuddle time with our sweet little girl as she has turned into quite the snuggle bunny!!  She still sleeps very well on her own, but she definitely enjoys being held close and rocked (although I think we might still enjoy it even more!).  It was one thing about which I often wondered since we were not able to hold her for such a long period of time after she was born, and even when we were able to begin holding her, it was not very often or for long periods of time.  Now we get to hold her every day, multiple times a day, and we are loving this change and certainly making up for all the weeks we did not get to hold her as well as the many moments even through the night that we do not get to be there and take care of her.  I am so thankful for the perspective on early motherhood which God is shaping in my life right now.  Early in the pregnancy as we began to anticipate the change in our lives that a baby would bring, I remember hoping that our baby would take to a schedule and sleep through the night quickly.  Now, I look forward to the day when she will be home with us and I have the privilege to be the one to hold and feed her and take care of her during the night as well as during the day.  Because she is so small, she will not be allowed to sleep through the night for quite some time, so this schedule of getting up through the night will continue for many weeks to come; but I am looking forward to that day when my baby is in my arms in those wee morning hours!!  She is continuing to grow well, and her doctor even said today that she is on the upper end of growth (as far as a daily average).  Was that ever nice to hear for our baby who is too small to even fall on the range of any "normal" chart!! We measured her tonight, and she is 14" long; so she has increased in length by almost 50% since she was born.  She is smiling all the time now, and we caught part of it on video tonight (of course she did not do it nearly as much once the camera started rolling, but we captured one or two).

Thank you for sharing in our joy and continuing to pray for us.  It continues to bless and encourage our hearts as we take another day, another week at a time.

NICU Day 63 ~ (February 8th)

Noelle turned 2 months old today, and I can hardly believe it!!  Overall, she is still doing really well with the main issue right now still being her acid reflux, and it seems that is just going to take some time.  Hopefully she can outgrow it before they have to resort to medications or (worse case scenario) surgery.  She had several episodes today where she dropped her heart rate due to the reflux; but for the most part, she just rested today, and we each got to spend some time holding her.  I think one of my favorite sights is watching her and Tom doing Kanga Care (skin to skin contact) together.  She just snuggles right up with him, and it's a sweet image to see her tiny little body nestled into his.  So, while the dropping of her heart rate made my heart rate increase a few times today, overall it was a pretty "boring" day, and we are thankful for that.  We still appreciate your continued prayers and hope to report another good day tomorrow!!

NICU Day 53 (January 29th)

Noelle had another really good, quiet day overall.  She gained 30 grams putting her at 700 grams total (or 1 lb. 8.7 oz.).  She is only 12 grams away from doubling her birth weight so we are hoping she reaches that and then passes it by very soon.  They do believe that she is probably experiencing quite a bit of acid reflux due to her small size.  She has been having quite a bit of desatting lately but she always brings herself right back up.  It is typical with acid reflux, so we are hoping that it gets better as she continues to grow.  Some days, she seems to sleep so deeply that it does not bother her too much, and other days it really seems to make her uncomfortable.  Today was a deep sleeping day so hopefully that means continued growth spurts.  We did not hold her today--she was on the cold side with her body temperature so we kept her in her isolette and piled on the warm blankets.  Other than those things, it was a pretty uneventful day. 

On the subject of Noelle but a slightly different note, there is a story airing on FOX 8 News (our local news station), this Thursday evening at 10:00p.m.  A lot of people have been asking about it so I will explain some of the background.  This story actually began back in October when we thought we were facing a fatal condition with Noelle.  We had contacted the NILMDTS organization ("Now I Lay Me Down to Sleep") which does volunteer photography for parents who have lost or will lose their baby.  It took us quite some time to reach the point where we would consider photographs if Noelle was stillborn, but in the end, we thought it would be the only thing we would have left to document the short time we would have with her and the only thing we might have to share with future children.  So we contacted the NILMDTS photographer for our area and were introduced to Tammy.  She met with us and learned our situation and offered to do a maternity session for us (which pictures many of you have now seen) and then to be there when Noelle was born to take photographs for us as well.  She also told us that FOX 8 had contacted her hoping to do a story on NILMDTS and to follow a couple going through the process.  The decision was up to us, and we told her we would pray about it.  Our initial reaction was "no way!!"  Things were difficult enough without cameras being in our face, but as we talked through things together and prayed about it, we had a change of heart.  It was yet another opportunity to document our journey with Noelle for our future children to see (keep in mind that at this point, we are preparing for Noelle's stillbirth) as well as to possibly be a testimony to the community.  We agreed to meet with Bob Buckley and then make our decision.  After meeting with him and Eric, his photographer, we agreed to move forward with them, understanding that we could back out at any time and after making it clear that our faith in God was preeminent in our lives, and we did not want that fact hidden from the story.  So they have been following us for quite some time and were there at the ultrasound when we first heard positive news and thought things might be changing with Noelle's outcome.  They still chose to follow the story even though the circumstances changed and the first part is now airing this week.  If you do not have a TV or if you are not local, FOX 8 has a livestream on their website, so you can watch it here (http://www.myfox8.com/news/livestreaming/) at 10:00p.m. eastern standard time on Thursday, February 2nd.  It will be shared by Bob Buckley in the "Buckley Report" sometime within the newscast.  We are constantly amazed at the relationships that continue to develop out of Noelle's situation, and we're praying that God just continues to use as as vessels for His glory.  Thank you for continuing to pray with us to that end!!

NICU Day 52 (January 28th)

Normally you would think that people would get tired of hearing the same report day after day, but in this case it is not so.  Another "boring" day is absolutely the best news to both share and hear when your life is lived in the NICU.  Noelle had another sleeping/growing day, and we just enjoyed spending time with her.  Our main prayer requests for her are as follows:

~Her growth.  She lost the 10 grams she gained yesterday, and it's a constant back and forth.  This is normal, and it's encouraging that overall she is still moving forward, but it is very slow going and we're praying that she starts hitting larger growth spurts soon.

~Her oxygen weaning.  They were able to wean her oxygen pressure slightly last night, and she has tolerated it very well.  We are praying she continues to follow this path and do well so they can keep weaning her until she is on room air very soon.  It's great that she's on the cannula, and yet we're already looking forward to the day when she can get rid of it...mainly because it makes her tiny nose sore!!

~Her body temperature.  One of the "tests" she has to pass before coming home is being able to maintain her body temperature in an open crib.  Currently, we can only have her out of her isolette for a short period of time before her temperature starts dropping so we're praying that her body can start regulating itself soon and adjusting its own temperature.

~Her feeds.  She is doing extremely well right now taking a bottle once a day, but the rest of her feeding is on a continuous drip.  Eventually they will "condense" her and start feeding her over shorter periods of time until she is eating every 3 hours.  They will continue to do this through a feeding tube and slowly start adding an additional bottle feeding each day until she can take all of her feeds by bottle (another requirement before she is able to go home).  This can take time as preemies stomachs have to adjust to the food hitting their stomach over shorter periods of time and taking the bottle can get tiring for them.  Our prayer is that she will tolerate these upcoming changes just as well as she has the one bottle feeding a day.

~Her continued health.  She currently is doing very well, and we're especially grateful that the weather has been so mild and thus limited the flu season here so far.  Our prayer is that this will continue, and that she will not be exposed/catch any virus going around but will be able to keep growing and doing well with "boring" days through the rest of her time in the NICU.

Overall, we are very encouraged.  For the very first time, the medical staff is telling us that we can "breathe easy" and that they believe she is past the most difficult and crucial time period.  She is doing remarkably well for her size, and so they continue to treat her according to her gestational age and not her weight.  She would have been 36 weeks yesterday, and she is on track with that in many ways except for her weight.  At this point, we are not anticipating bringing her home before March, and I am mentally preparing myself for April or later just so I do not get my hopes up too soon.  Thank you so much for constantly keeping our family before the throne of God.  You are an incredible encouragement to us, and we cannot thank you enough.

NICU Day 45 (January 21st)

It was another really good day in the NICU with Noelle.  We are getting spoiled with so many good days in a row, but we hope it continues.  Noelle was doing so well on the cannula this morning that they finally quit switching her between that and the CPAP and just left her on the cannula.  So far, she has continued to do really well with it!!  We even got to hold her tonight for a little while and thoroughly enjoyed watching her tiny face (I wore a mask and gown as I have never developed any other symptoms than the pressure in my ears, but we wanted to play it safe).  She absolutely loves her pacifier!!  It fills her mouth, but it definitely quiets her down when she starts to get a little fussy.  She has definitely starting to build up muscle tone as well.  Tonight, as she lay on her tummy, she pushed herself up and completely turned her head from one side to the other.  It is incredible to watch such a tiny baby do something like that!!  They decided to leave the PICC line in for one more day so we are really hoping that it does come out tomorrow.  She will also receive an echocardiogram tomorrow to double check the function of her heart since they stopped her heart medication today.  Other than that, we are just enjoying these good days with her and watching her grow.  God has been so gracious to us, and we thank Him for another day of Noelle's little life.

NICU Day 36 (January 12th)

~Tom truly holding Noelle for the first time~

Noelle turned 5 weeks old today...I can hardly believe it!!  She was
doing well enough that Tom was able to hold her for the first time
(Kanga Care) for an hour this evening.  An hour has never gone by so
fast!  They continued to wean her ventilator settings today (slightly)
as she was responding well to that, so that is a huge praise.  We're
hoping that she can come off of that machine within the next week or so
and be extubated and move to a CPAP machine.  I can't wait to see her
little mouth!!  I'm also looking forward to her being more
comfortable--she is moving so much more these days that it often affects
the position of her tube and bothers her.  She weighed in tonight at 1
lb. 7 oz. so we're excited to see progress there as well.  It is already
hard to imagine how tiny she was when she was born.   She is still so
small and yet she is very close to doubling her birth weight.  She will
receive an echocardiogram tomorrow so we're looking forward to seeing
how her heart is doing at this point.  Other than that, there is not
much to report (which is a good thing!).  As always, thank you for

praying!!

NICU Day 34 (January 10th)

Today was very similar to yesterday and there were not many changes made in Noelle's care.  They did increase her feeds again as she is tolerating them very well at this time, and she has put on some weight.  She weighed in at 610 grams or 1 lb. 5 oz.  We received the results back on her echocardiogram and they showed very slight improvement with her heart but nothing significant.  The left side seems to be working well, but the function of the right side is still poor.  The doctors think it is going to take some time for this to be corrected since the hypertension was/is so severe.  So that is our main prayer request....that her heart will continue to heal and be able to function at full capacity very soon.  They will repeat the echocardiogram again in a few days to check the progress.  Other than that, she seems to be feeling much better than even the last couple of days.  She was more active today than ever and was very responsive...especially when she was awake.  It's so fun to see her respond to us talking to her and touching her...especially since we cannot hold her right now.  We truly appreciate all your prayers and are thankful to report yet another day of God's gracious goodness to us.

NICU Day 19 (December 26th)

Overall, Noelle was stable today, but she has dropped 20 grams again putting her down to 14.8 oz.  This was the main focus of the doctors today as they are trying to get her over this plateau and get her caloric intake increased so that she starts gaining weight and growing.  It is a lot of adjustment back and forth with various fluids she is receiving along with the breastmilk so we are praying for wisdom for the doctors and good reception for Noelle of all her fluids so that she gets the most out of them and can start growing.  She also had to receive blood transfusion today as her hemoglobin was low again.  She did have a heart murmur as well, but they are suspicious it is due to the anemia from her low hemoglobin so hopefully that clears up with the transfusion.  Jill was able to hold her again for a short time tonight which was a special blessing~each time is a special treat and never long enough, so we are grateful for each minute that we are able to enjoy that with her.  So overall she is stable but really needs to grow.  Thank you for your continued prayers.  We hope you had a wonderful Christmas!!

NICU Day 17 (December 24th)

It is Christmas Eve, and we received the best possible Christmas blessing: another good day with Noelle.  It was a pretty uneventful day actually, and we're grateful for it!!  She did regain the 20 grams she lost so she is back to weighing 1 lb. even.  Her feeds have also increased, and she is still tolerating them extremely well.  Jill got to hold her again for a few hours today which was the best Christmas present ever!!  So, not much to report but that is good news right now!!  She just continues to grow, and we thank God for it.  Have a very Merry Christmas!!

NICU Day 10 (December 17th)

  ***Written by Chris McDowell, Jill's Mother***

Thank you all so much for your prayers. Jill and Tom were able to meet at length today with the neonatologist who was on duty. He happens to be the one present at Noelle's birth and helped take care of her and has even checked in on her this week when he was off.
First off, one correction is that Noelle has hypOthyroidism not hyper--. That was a misunderstanding on the terminology. Anyway, the medicine they started her on for that seems to be helping. Her blood sugars have been stable the last couple of days.
Her breathing is doing very well. She has done very well with her oxygen levels even as they have stepped down the work that the ventilator is doing for her. We hope to see improvement soon in the one small area of lung that wasn't as developed.
Major praise today--Jill actually got to hold Noelle outside the incubator for about 30 minutes. Noelle just snuggled up and slept.
The doctor took Jill and Tom to an area where he could show them all the images of Noelle's brain and show them the area that was of concern. The big concern is for a brain bleed. He said they aren't seeing symptoms of that. The lateral ventricle (I don't know if just one or both) slightly larger than what they usually see. He said this may just be normal for Noelle and not mean anything. They are watching for a brain bleed and for fluid build up in the brain, but he said that if this were to be going on there would be symptoms and Noelle is not exhibiting any symptoms so they will just continue to monitor closely.
Her feeding tube was bumped up to 0.3 ml/hr today. She tolerated the 0.2 well the last 24 hours. Still a ways to go. They usually like to see babies this small be taking in 3 ml/hr. I figured out that at the 0.2 level that gets her 1 tsp. in 25 hours. At 0.3 she should get 1 tsp. in about 16 hours. I pray she continues to do well so this can step up to a more substantial amount, but she is tolerating this well and it is allowing her intestines to grow and start to function properly.
She weighed 440 grams today which is about 15.5 ounces. That is good. She had so much swelling and edema from the birth that they warned Jill and Tom that she would drop weight -- most likely below her birth weight (365 grams/13 ounces). The swelling/edema/retained water is almost gone, but her weight is still up. She did drop 10 grams today because yesterday she was 450 grams, but that is not anything of concern. We hope to see this weight continue to go up.
Lastly, Jill and Tom would appreciate your prayers for recovery, rest and calmness in the midst of stress. It's beginning to catch up a bit. (That's why I'm doing the update tonight). They are trying different ways to work their schedule to see what will work best and I know they would appreciate prayers for wisdom and discernment. Thanks to you all and my God Bless!!

NICU Day 3 (December 10th)

  ***Written by Chris McDowell, Jill's Mother***

Praise the Lord--Another somewhat stable day for Noelle. Her oxygen levels were pretty consistent today. They had dropped a bit, but the medical team expected that because they put her on her tummy to sleep last night. She rested much better, but it is harder for her to keep a higher O2 level.
She did also bruise a bit from sleeping on her tummy-- she is so fragile, so she is on her back tonight. Her glucose was down a bit so they gave her something for that and it was back to normal range this evening.
They are going to give her another small transfusion tonight. It's hard for her body to keep up since they have to keep drawing blood to check different levels. Jill and Tom both have gotten to hold her briefly in their hands as the nurses have changed out the bedding and sterile foam "cradle" that couches Noelle. She likes to hang onto their fingers.
Any little imbalance is so crucial to her system, but they keep an extremely close eye on everything and God has been gracious.
Jill is expected to be released later tomorrow and then they will begin the daily treks to the hospital. Grand rounds start at 9AM so Jill will be there early each morning and stay through the morning, then probably go home to rest for a few hours before Tom gets off work and then they will go back up for several hours each day.
They are cherishing each day and thank everyone for their prayers, support and love.
God Bless.