Grey is 3 lbs! THREE POUNDS! How is this possible? You would never know this sweet little baby is having “trouble with feeds” by the looks of the scale and her adorable double (at times, triple) chin. We love her chubby cheeks and tiny rolls that are starting to form on her legs and arms.
She is doing great so far with the new feeding tube placement and formula feeds. Her belly is looking good by feeling soft and not being distended. We are so thankful that this seems to be working at the moment. She continues to be on NIV NAVA for breathing control. The doctors want to keep her on this until she is able to tolerate appropriate feeding amounts. She is on very low settings for breathing assistance so it’s not harmful for her to stay on it.
We are now able to hold Grey everyday two times a day!! This means Ryan and I can both hold her everyday!! We are so excited about this milestone. We want to love on her as much as possible! I can’t wait for her to be out of that box and in our arms at all times! We have a while until that day comes but when it does we are ready!
We are also ready for her to wear clothes! I’m anticipating this day so much that I have a cute outfit waiting for her at the hospital to jump into! We know that day is also far away, but like the eviction from the box, we are ready for this too! If she gets any bigger, the outfit may not fit so hopefully this happens sooner rather than later.
Continue to pray for Grey’s belly and that she continues to tolerate the feeds that she is given. We need this girl on “full feeds” and off her IV nurishment. Pray that she gains weight appropriately and not too fast. If she gains weight too fast it could compromise her breathing and we would have to give her a diuretic to pull of fluid and possibly stop feeding her- we definitely don’t want this to happen.
Lately I have been so thankful for the NICU nurses and doctors who take care of Grey every single day. They truly love her and we love them! They love on her when we aren’t there and give us updates any time we call, or just randomly during the day. I’m sure many NICU moms can agree with me that the nurses are so important for our sanity as mothers. They reassure us when we are scared or confused. They make us laugh. They answer our silly questions. Most importantly, they love our babies as much as we love them. So to the NICU nurses and doctors, specifically at Suburban, know that you are not taken for granted and we appreciate everything you do! We notice her cute bedding and the way you love her and we thank you!
Thank you for all the prayers and encouragment over the past 66 days! It’s been non-stop and we have needed it every single day!
Wow! Is Grey really two months old already? Time has really flown by. Grey is getting so big! She now weighs 2 lbs 8oz. and is 14 inches long. She has gained over 150% of her birth weight and grown 4 inches! Praise the Lord for His protection and healing!
In our last post, we mentioned two areas of concern for Grey — feeding and IV access. She is doing well but continues to face these challenges. She has had several IVs breakdown over the last few days but currently has a PICC line in her leg (this IV catheter runs through a vein in her thigh all the way up to her heart). It shows some signs of irritation but all blood cultures show no infection! Please continue to pray for secure IVs with no infection.
Grey still hasn’t received any stomach feeds since they stopped them five days ago because of her distended belly. They performed a GI study on her yesterday to make sure there was no twisting or blockage of her digestive track. This involved putting a dye into her stomach and taking a series of x-rays throughout the day to monitor its progression. Everything came out looking normal! It looks like she just needs continued growth and maturation of her stomach in order to tolerate food. They plan on starting her stomach feeds again tomorrow. As I mentioned in our last post, this time they will place her feeding tube lower in her stomach and place another tube in her upper stomach to ventilate the gas buildup. They will also start out by feeding her a formula with nutrients already broken down to make it easier for her stomach to digest. If she tolerates this for a few weeks, they will then slowly introduce plain breast milk, followed by fortified breast milk. Please continue to pray for her little belly.
Everything else is looking great! Her last dose of steroids was four days ago and her lungs look wonderful! She is breathing great at normal oxygen levels. She continues to have sporadic apneic episodes so they will continue to keep her on the vent for a little longer to give additional support when those occur. This is completely normal at this stage.
Thank you all for your continued prayers and support!
We have some prayer requests that we would like to focus on over the next few days. First, that Grey would be able to tolerate her feeds and, second, that her IV lines would remain intact.
During the night we received a call from our doctor stating that Grey was not tolerating feeds again. They restarted feeding yesterday and within hours her belly filled up with a lot of air. This could be caused by a number of issues; weak digestion, food intolerance, infection, but most likely the gas is a result of her ventilator forcing air into her stomach. They have stopped the feeds and put a tube (repogle) down to suction out the air. There is a delicate balance between her nutrition and respiratory support. Clearly she needs to breathe, but she also needs adequate feeding in order to grow and develop her lungs and other vital organs. Next steps for the doctors are tough and not completely clear yet. As of now, the plan is to push her feeding tube further down to the lower area of her digestive track while keeping the repogle in her stomach to suction gas build up. A last step would be to re-intubate her, which would direct air straight to her lungs and reduce flow to her belly. We want to avoid this if at all possible as this is invasive, uncomfortable, and harsh on her lungs.
The other issue she is having is with her IV access. She has been poked so many times that her little body is running out of places to stick an IV. Her veins do regenerate but they are so small and fragile that they do not last long with an IV catheter inserted before they break down. These IVs are critical for background nutrition support, antibiotics, and blood transfusions. She currently has two in place. Hopefully they stay intact for a few days. If theses fail and nurses are unable to get any new IVs, Grey might need to be transferred to the hospital downtown for surgical placement of a central IV line. We want to avoid this as well. She has had some swelling in her leg and arm from her last two PICC lines, hopefully this is mechanical irritation and not infection. They took some blood cultures this morning to rule out possible infection in her IV and stomach. Results will come in 48 hours and they are proactively providing her with antibiotics. She is also retaining some fluid and receiving lasiks to pull it off her lungs and getting a blood transfusion per her morning labs.
To quote the doctor, “she isn’t being her feisty self,” and she has been more fussy than usual today. She is clearly in some discomfort. She is a fighter and we have witnessed her overcome so many challenges already! Hang in there Grey this too shall pass!
Grey continues to hover around two pounds. She has had some trouble recently tolerating her stomach feeds. Her swollen belly causes more pressure on her lungs, making it more difficult to breath, so they have discontinued those and will be providing her with supplemental nutrition through her IV for a day or two. She has also started another round of steroids to help with her lung development. The hope is that this will help her ween further down and eventually off the ventilator.
Otherwise, Grey is doing great. She has graduated to larger diapers, a larger paci, and a larger hat! She is so cute. Several nurses gathered around to admire as she showed off her new hat. She was loving the attention — bright eyed and working the spotlight already!
She did it! Today, Grey officially reached the 2 lbs. mark – doubling her original birth weight! It has been amazing to watch her grow over the last two weeks. It seemed like everyday we could see a noticeable difference and we were blown away by the change. She is starting to “fatten” up a bit. Her ribs don’t show through as much, her arms and legs are getting thicker, and her little cheeks are starting to puff out! It is so much fun to see her facial features form too! She definately takes after her mother – what a blessing : ) We think she has her chin, cheeks, and big beautiful eyes!
Great job Grey. You are so precious in our sight! Keep fighting my little heavy weight!
Is it really August?! If you are like me, I’m a little blown away by the fact that it is already August! The days are flying by – which is GREAT for us because before we know it we will be home!
Grey is doing really well. She is gainging weight and we are thrilled to see those chubby cheeks start to form! She is now, drumroll please… 1lb 13 ounces (830 grams).
She had a rough morning yesterday but seems to be doing a lot better today! She has really good days but then occasional bad days that leave Ryan and I anxious at times. The most important thing is that she is growing! We can see the rolls starting to form!
Thank you for your continued prayers as this journey continues.
Here’s a fun video of when Grey was WIDE awake today! We absolutely love this time with her!