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!
We are so thankful for all of you who have supported us through prayer and encouragement during the past 6 weeks. Our church, Northeast Christian Church here in Louisville, made a sweet video that we will cherish forever. We are so thankful for this documentary of Grey’s first few weeks of life. This video brought many happy tears to our eyes and we feel so blessed that we have this to show her when she is older. I can’t wait to describe to her the amazing ARMY of faithful prayer warriors who are fighting for her!
Please enjoy this video… God is so GOOD- all the time!
Also, Grey had a follow-up eye exam today and there were no signs of disease at this point. The opthalmologist will do follow-up exams every two weeks to look for a common condition in preemies called retinopathy of prematurity (ROP). A disease in which the high oxygen treatments cause abnormal growth of retinal blood vessels leading to further vision problems. Please keep this in your prayers! Thank you all and God bless!
My family came down to visit today. The majority of them haven’t seen Grey since she was born. They were amazed with how big she has gotten. Seeing her at 450 grams and now 720 grams really makes a big difference. Sometimes it is hard for us to tell because we see her everyday, but today put it into perspective that she really is changing!
She is having a good day but her respirations were high and you could tell it was a bit harder for her to breathe. They decided to take a chest x-ray and saw some fluid on her lungs. They gave her medication to help correct this and she seems to be responding well.
After my family left, we were able to give Grey a bath! Her first REAL bath – in water! I thought all babies hated water and this would be a complete disaster, but Grey really enjoyed it! She was calm the whole time and didn’t seem to mind the water. Of course we took many pictures and video of this momentous occasion.
Today Grey was put back on the NIV NAVA vent. She tolerated the high flow oxygen well during the day yesterday and it was great to see her on it, but she began having more apenic episodes than normal as the evening progressed. This is due to her neuro prematurity and her brain “forgeting” to signal her lungs to breathe and keep her heart rate up. When this occurs, she will sometimes recover quickly on her own and others she requires some physical stimulation to “wake” back up. The decision was made to put her back on the support of the vent early this morning.
We wanted to fill you in on this little update as we were very excited to give the announcement yesterday. She just wasn’t quite ready to come off the vent yet, but she hopefully will be soon!
The past several days have been fairly quiet and Grey’s progress remained at the status quo for most of the week. Her greatest challange has continued to be her ability to tolerate feeding and intake the amout of calories she needs to grow. Her tiny stomach has limited amount of bacteria to help breakdown food and her little kidneys can only tolerate so much protein. Also, her torso is so small making space a vital commodity. When space is taken up by the food in her stomach her lungs struggle to find the room to expand properly for breaths. Furthermore, some of the oxygen from her vent can get trapped in her stomach as well, taking up even more space. There is a delicate balance between providing the necessary calories she needs to grow while maintaining proper electrolyte balances and allowing room for her to breathe. The doctors have decided to supplement her stomach feeds with TPN (nutrition through an IV). This is to help provide her with some calories while reducing demand on her stomach. Grey is now up to a whopping 630 grams (1 lbs 6 oz). She is still tiny but has gained 40% of her birth weight!
This morning we arrived to yet another pleasant surprise – she is completely off her ventilator! She is now on high flow oxygen and, for the time being, handling it well. This is a nasal cannula that provides a continuous flow of oxygen. This requires her to take breaths completely on her own, as opposed to the NIV NAVA vent that she was previously on which assisted her breathing through puffs of air pressure through her nasal cannula. The doctors and nurses are impressed that she can handle this already and hoping this might help with her distended stomach (gas buildup caused by the vent).
Praise The Lord for His continued hand of protection and healing power! He continues to show His Awesomeness! Thank you all for the many prayers. Please keep them coming!
In a few short hours our girl will be one month old! I can’t even really wrap my mind around this. How did the weeks go by so fast? So much has happened in the last four weeks that have rocked me spiritually, emotionally and physically. Each day seems to come and go, and each day our little warrior princess keeps fighting.
A month ago my faith wasn’t as strong as it is now. I now know what it feels like to love a child and love her unconditionally. I’m still learning about Grey and getting to know who she is, but I love her and these past four weeks have shown me what love truly means as a mother. I’m so thankful God chose me to be Grey’s mom. It’s not exactly the way I would have planned my baby’s first month of life to be like, but I know God is in complete control and using this to glorify Him.
Each week brought it’s own challenges and tears. Each week we asked you all to pray with us to get Grey past yet another hurdle. Thankfully, each week Grey was able to overcome the challenge and bring on a new. It’s amazing to see how much she has changed over the past four weeks. God continues to protect her each week and use her exactly as He has planned.
Grey continues to improve and gain weight. Actually, some of the nurses have nicknamed her “big mama,” which is hilarious. All of her lab work came back normal yesterday and the doctor was impressed with how quickly she improved. She started feeds again today with regular breast milk and they will slowly reintroduce more protein and calories over time.
Also, we forgot to mention earlier in the week that all of Grey’s genetic testing came back normal. Yet again another praise to add to the list! We are so thankful that list keeps getting longer and longer.
I’m thankful that she is here four weeks later. I’m thankful for all of you who have prayed and supported us through meals, coffee, laughs, hugs, tears, presents, walks, emails and the list could go on and on. It’s been so amazing to have this support and know people truly care about us.
So, here’s to our girl and the progress she has made! Happy 1 month, Baby Grey! We love you! Thanks be to God!