NICU Day 55 (January 31st)

Noelle had another really good day, and we are so excited to be able to report that she is growing and visibly starting to look like a different baby!!  She currently weighs 1 lb. 10 oz. and is consistently starting to put on weight.  She had another eye exam which showed that her eyes were still premature/immature but no other issues were present, which is another huge praise.  Tom was able to spend a couple of hours holding her, feeding her a bottle, and playing with her tonight, which he thoroughly enjoyed.  The tiny goofball was doing little pullups!!  She would grab his finger with both hands and pull herself up towards it, and she repeated this several times in a row.  He also has a game with her where he will push against one of her hands, and then she will push back against him.  It is sweet to watch them "play" and exciting to see her so responsive.  I stayed home again today as I came down with a case of pink eye and had to get eye drops from the doctor.  I am no longer contagious after 24 hours so we're thankful for that, but in the meantime, everything is getting washed and scrubbed down since we have no idea where I picked it up.  Thank you so much for continuing to pray for our little family.  It is easy to focus on "small" things that can be scary and worry about all the sickness being passed around, but then God reminds us that He is still the One in control, and ultimately it is He who is protecting Noelle, not us.   We are so thankful we can rest in a powerful, sovereign God who loves our little girl more than we ever possibly could.

***As it turns out, I simply have allergies and am not contagious~huge praise!!~

NICU Day 54 (January 30th)

Tonight's post will be short and sweet as Noelle had another really good, "boring" day.  She gained another 20 grams, putting her at approximately 1 lb. 9 oz.  That is a huge praise, and we are hoping this weight gain trend continues!!  Her oxygen was slightly weaned again today, and she has tolerated it really well so far.  We were able to spend some special time with her today as she was really alert for a period of time and even took a good portion of her bottle today.  Thank you so much for praying for her continued health and growth!!

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 51 (January 27th)

Today was another really "boring" day in the NICU.  Noelle gained 10 grams, putting her at 1 lb. 8 oz so we are closing in on doubling her birth weight again.  She took her bottle like a champ today, but she mainly just rested and grew.  Her pituitary gland study was determined to be just fine, so we are thankful for that.  They are actually decreasing her thyroid medicine a little bit, so we are hoping it is a sign that perhaps she can eventually keep adjusting her body and grow out of the issue.  She may not, but we are hoping she does.  Other than that, it was a pretty uneventful day...the very best kind!!  As always, thank you for praying!!

NICU Day 50 (January 26th)

~Aunt Donna Holding Tiny Noelle~

Day 50 in the NICU!!  Wow!!  So many milestones have been reached.  First, we had to get through the first 24 hours and then the first 48.  After that, it was 2 weeks, then a month...now we are at day 50 and closing in on 2 months.  So much has happened during that time period and through it all, God has drawn us closer to Himself and made Himself even more real to us and taught us so much through this process, and we know it has only just begun.  Noelle was really sleepy today.  Normally, she will wake up every four hours with her diaper change, but today she would just kind of peek one eye and then go right back to sleep.  She was not lethargic...just sleeping deeply.  It is great to see because it means that she is growing and not burning calories moving around and being awake.  She was alert for a short time tonight but we got her put right back to sleep before we came home.  She gained 40 grams yesterday and weighed in at approximately 1 lb. 7 oz. so if she can keep on that path of growth and weight gain, we will be doing really well.  They are currently running some panels on her pituitary gland since she has had issues with her thyroid and blood pressure at the same time.  Hopefully the answers from that will give them direction on how to adjust her medication (if needed) and help her continue to grow.  She is doing well on her cannula, but she has not been able to wean down on that as of yet so we are praying that she can start doing that soon as well and get down to room air and breathe completely on her own.  We are so thankful to be reporting another good day with our little girl.  Thank you, Lord!!!

NICU Day 49 (January 25th)

~Learning to Take a Bottle...One Drop At A Time~

Noelle had another really good day in the NICU.  In fact, today's morning rounds with the medical staff were the shortest she has ever had in the past 6+ weeks!!  The summary: she needs to grow.  So that is it...just like a term baby, she now needs to eat, sleep, and grow.  Love that!!  Of course she has some other things they are monitoring, but those pale in comparison right now.  We're beginning to feel like real parents as we get to be more and more involved in her care and hold her a little more often, and it is really starting to sink in that we actually need to start preparing for her to come home!!  We are still weeks away, but we had not gotten anything ready at home since originally they told us her condition was fatal and that diagnosis began to change only a few weeks before she was born, and then since then...well...life has been turned upside down!  It is fun to start dreaming and planning for that time in our lives....it is a relatively short time away!!   Thank you so much for praying for our little family.  We are overwhelmed with God's grace and goodness in our lives and so appreciate your part in praying for that as well.