NICU Day 105 ~ (March 21st)

Today was a good day but a very long day, and that is to be expected as we trod through these days of growing and waiting to complete the necessary milestones before Noelle can come home.  She currently weighs 1,320 grams / 2 lbs. 14.5 oz. and is continuing to put on weight like a champ.  Tonight as we left and rode the elevator to the first floor, a couple of other people stepped on with us and commented on their long day.  They had been at the hospital all day long...since 8:00a.m.!!  Tom and I had a little chuckle over that one.  In months past, I might have thought the same thing after spending one long day visiting someone at the hospital, but a little perspective definitely goes a long way these days!!  The Lord gave me two encouragements this evening to continue to push me to endure through this journey.  The first was a book on our doorstep when we arrived home.

Stephen and Shannon Conley are friends of mine from college, and their little preemie son, Isaac, just turned one year old.  Shannon reached out to me several months ago when we started on this journey with Noelle as they had lost a daughter and delivered her early, just as we expected to do with Noelle.  Then the circumstances changed and she related to me again when we landed in the NICU as they had only recently come through their NICU journey with Isaac.  It has been a blessing to ask her questions and re-read through their experiences.  I think every preemie family (especially those born at less than 30 weeks) would agree that nothing can truly prepare you for this journey nor can you really understand it until you walk through it.  I know I did not.  I read through Stephen's and Shannon's journey and was concerned and prayed for them, but I had no idea what they were going through physically, emotionally, or spiritually as they battled for Isaac's life.  Thankfully, they have come through that part of the process and are enjoying their sweet little boy. But life at home has not been without its challenges either; and as we prepare for life at home with Noelle, we are thrilled and apprehensive all at the same time.  Caring for a preemie baby is often very different than a term baby; and all the things I would have done or allowed with a term baby have to be reconsidered and often changed or eliminated due to Noelle's situation.  Still, we are excited; and resources such as this will go a long way to helping us handle her at home and create a new "normal" in our lives.  So thank you, Stephen and Shannon.  This book arrived at just the right time and is an incredible blessing!!

The second encouragement came when I called and found out that Noelle's "Uncle Jim" will be watching over her tonight.  Jim has had her many times when she was in NIC 1 but has not been assigned to her since moving to NIC 2, so we were thrilled to find out he will be taking care of her tonight.  He takes such excellent care of her (as do all the nurses, but we just have special connections with some of them), and I will rest easy tonight knowing she is being cared for by him.  This is the only photo that I have so far of them together, so we will have to soon remedy that! 

I am looking forward to calling through the night and hearing, "NICU, this is Jim."  We are so thankful to God for another good day and hope to report the same again tomorrow.  Thank you for praying.

NICU Day 41 (January 17th)

Thankfully, there really is nothing new to report today.  The doctors are still working on switching her medications over so that we can get rid of the PICC line soon.  It will still be a few days as they will wait to see how she tolerates everything with the switch and then take the pic line out.  We are really looking forward to that--it means that much less that is attached to her and makes her much easier to hold!!  The same discussion is still going on as far as her ventilator as well so I imagine we will be seeing something happening with that by the end of this week.  She had an eye exam today which was good.  It showed that her eyes are immature as of yet, but that is to be expected since she is still so small.  Preemies eyes are prone to a lot of different things including blindness, so we are just thankful that she is doing well so far.  She did have testing done that showed early signs of Rickets due to the lack of nutrition when she was off her feeds for so long (they supplement what they can in the IV fluid but it doesn't always cut it).  They are giving her a supplement to help with this and hopefully counteract any further progression and reverse the level that she already has.  I believe we forgot to report that all of her blood work which they were testing genetically came back completely normal--no chromosomal issues at all.  It doesn't rule out all syndromes, but at this point it looks as if she was just extremely small.  We may have some answers for that as well as we just got the pathology report back on the placenta.  The doctors have ordered some blood work for me to determine if I have a blood disorder (I already have one), and this may have caused the issues with the placenta and thus the small growth for her.  We are praying that they get some answers from this as it could really help us avoid issues like this in future pregnancies.  Another prayer request is that it seems I am trying to fight a cold.  It is not full blown yet but seemed to get a little worse this afternoon and so I stayed home from the hospital tonight.  It's tough to stay away but it's the best thing I can do for her right now.  A cold or flu virus in her fragile body could turn all of these good days in the exact opposite direction so we are earnestly praying that she stays healthy during this time and doing our best not to expose her in any way.  We're so thankful to God for each day of life He has given to Noelle and especially grateful for this past week of good days.  We pray that it continues in that direction and that we can report another good day again tomorrow.

***Huge Praise: the cold turned out to be only allergies!***

Addendum to Day 8

Addendum to yesterday's update: They started feeding her again yesterday afternoon at half the rate they did the first time. We're praying that she tolerates this amount better. It's normal for preemies to have to go on and off their feeds, but the more she tolerates, the better it helps her fight infection and gain weight. We'll see how today goes!!

NICU Day 8 (December 15th)

Today at 11:27AM, we celebrated one week of life outside the womb with our little Noelle!! I cannot believe we are at this day already--it still seems like yesterday that all the drama was going down, and they were delivering our baby girl. God's amazing grace has been so evident as we look back on that day--the timing of the details could not have been orchestrated by anyone other than Him. Noelle had another good day today and is still stable. The doctors discovered that she has hyperthyroidism and have started her on the medications for that, so hopefully that will help the blood sugar fluctuation and weight gain especially. It is not certain whether she had this in the womb and thus it contributed to her small size or if it's something she has since developed. Some preemies develop this as a "transient" thing and grow out of it. The geneticist also called today and said the fast results on Noelle's blood came back normal concerning her chromosomes...just like the amniocentesis. The full results won't be ready until the new year, but it was yet another encouraging sign that nothing is glaringly wrong. So, another day down. We are thoroughly enjoying our precious bundle--she is becoming more alert at times and is very responsive to our voices and touch. Thank you for caring enough to read these updates and keep up with our small family. Your expressions of love, your kind comments and thoughts and especially your prayers are appreciated from the bottom of our hearts. We wish we could communicate back to each one of you!! Thank you.