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!
Grey has had a slight step back over the last two days. Her heart rate and oxygen saturation levels have been dropping more often than usual, often to very low levels that require physical stimulus (sternal rub or pat on the bottom) to bring her back up. When these levels drop too low we can even see her skin tone change to a gray/blue color due to the lack of oxygen circulating. This is a little scary to see happen but afterwards we are able to joke with the nursing staff about the irony of her name. “Grey, quit turning gray! You scare us when you do that!” The doctors gave her some antibiotics just in case there is infection setting in. However, this is not likely the case. Blood labs show that the cause of her arrhythmia issue is likely due to slight hyperkalemia (elevated potassium levels). Her little kidneys are having trouble tolerating her high protein diet. This is causing elevated potassium, which in turn create arrhythmia problems. Thankfully, they were able to catch this early as high potassium can be very dangerous and lead to severe problems such as cardiac arrest. To treat this they have stopped her feeds and given her medication to help lower her potassium (Lasix and Kayexalate). They also gave her a blood transfusion. So far this seems to be helping. The afternoon lab work showed that her potassium levels are lower. She will begin feeding again when her electrolytes are balanced and her arrhythmia episodes subside. She will likely start with lower protein and slowly ramp up to the higher protein diet (fortified breast milk) that is so necessary for her to grow.
Grey continues to progress well and these little bumps in the road are expected. We praise the Lord for His many blessings and placing His protective hand around her! We are praying that her heart rate and oxygen saturation stabilizes and that she begins tolerating feeds better in order to do what is most important…GROW! She has started to gain a little weight. She is now up to a whopping 1 lbs. 2 oz. and measuring 30 cm – almost a foot!
Here are some fun pictures we took today for a little perspective.
Happy Sunday, everyone!! Tomorrow I would be 29 weeks! Crazy that Grey is here and we will be celebrating 1 MONTH on Friday! Grey has been a rockstar the past few days and we could not be happier! The doctors and nurses seem to be pleased with her progress! Everyday is a new challenge but so far so good!
As Grey progresses, March of Dimes has a fun way of rewarding her milestones. The above picture is a necklace that has beads for each milestone Grey achieves. She can get more than one bead if she has a procedure done twice. Also, they give her a bead for each week she in the NICU. It’s awesome to see this necklace get bigger and bigger each day she is here. Grey has been dominating each milestone so she already has a lot of beads! Go, GREY! We can’t wait to show her this when she is nice and plump and tell her how awesome she is!
There hasn’t been much change since our last post, but she did stop her steroids yesterday. The true test is to see how she handles breathing without them. Today has been a good day. Our prayer is that she continues doing well without steroids. We are still looking into those BIG beautiful eyes of hers. We actually can’t stop commenting every time she opens them. We are always saying “Oh, Look!! Her eyes are open!” She does this several times a day. Each time is like the first!
We have been hearing so many stories of the army praying for Grey. Just yesterday, a sweet friend of mine said “How could Grey not open her eyes on her own when she has half the world praying for her?” This brings tears to my eyes because of how true it is. I really wish I could hug every single person who thinks and prays for our sweet girl. She needs them and we love knowing people are truly praying. Prayer is powerful and it has become so evident to us through Grey’s life. We know we have a long road ahead and we know there may be valleys in our near future; but even in those times we will say, “It is well,” because we know God is working out His awesome plan. Ultimately, we believe she is God’s child and we are blessed to be the ones He chose to care for and love her.
Thanks so much again for praying with us! We can’t wait to show you her necklace once we are discharged.
One more thing… Dad got to hold Grey today and she made some little squeaks that we had to share!
Wow! Has it really been 3 weeks? Time has been flying by! It’s crazy how going to the hospital multiple times a day, making decisions for another life, and being parents to the sweetest little angel has become our new normal. I can definitely tell you 4 weeks ago, I would never imagine that this is where we would be. However, I wouldn’t trade it. Ryan and I have grown so much through this process and Grey is doing fantastic.
She continues to be extubated which is great for a baby her size, she is tolerating feeds, and she had a great eye exam with the ophthalmologist. He reported that he didn’t see anything concerning at the moment but she is still considered “high risk” because she is a preemie. He will come back for a repeat eye exam in about 3 weeks.
They are discontinuing steroids on the 12th so our prayer request is that she continues to breathe and develop well without them. Thank you for continuing to pray for Grey and supporting us through this journey. We continue to praise God for each miracle!
I wanted to leave you with some fun pictures of Grey! We all love seeing this sweet girl!
The past three days have been yet another testament of God’s goodness, power, and faithfulness! We walked into Grey’s room the morning after Allie got to hold her for the first time, and to our surprise, no more ET tube! Grey has responded so well to the steroids that they could not lower the settings on the vent any further. So they replaced the breathing tube in her throat with a nasal cannula. Her breathing is still supported by the vent but is now much less invasive and relies more heavily on her own lungs. With the ET tube removed, we can now hear her beautiful cry, well, more like her tiny squeak. Music to our ears! While she has tolerated this extremely well over the past few days, doctors say there is a strong probability that she will lose energy and need to be re-intubated again, but that’s ok, we’ll celebrate these baby steps forward! She has also since had all of her IV lines removed. Her tiny veins can only support these catheters for so long before they begin to breakdown and the risk of infection increases. Her stomach is working well so they are giving her meds through her OG tube with her feedings instead. It is so nice to see her little body without all of that hardware.
Fewer lines and tubes to mess with make her much easier to manipulate and HOLD! Sunday was daddy’s turn! What an amazing feeling! For the past two weeks, as I watch her struggle to breath, be poked and prodded, all I want to do is be able to embrace her and let her know that we are there. I can’t imagine how scared and alone she might feel outside of her mother’s womb, stuck in an incubator without any real comfort. I was able to hold her for about an hour and a half. She feels so much smaller in my hands and her tiny little legs squirming around on my chest. What a great feeling! These moments should continue to increase but for now we are limited to holding her every other day for about twenty minutes. This is until she puts on some more weight. We can’t waist any unnecessary calories trying to keep her warm and through the added stress during transfer.
These were all great moments of joy! But they were soon followed by more concerns from doctors around the fusing of Grey’s eyes. They were mystified as to why they had not epithelialized and opened yet. After consulting with the ophthalmologist, our neonatologist said it would be too complicated to attempt surgery at this stage for fear of her eyelids being fused to her eyeball. Any operation would have to wait until she was closer to term. They explained that academic literature links fused eyelids in babies to cataracts, cornea issues, and blindness. However, there just aren’t any case studies out there relating to preemies of her size. As we’ve mentioned before, they sent some blood work in for genetic testing to see if they can find any underlying disease or nuance in her genetic code that could explain this. These results will take about two weeks to get in.
In the meantime, we’ve just been praying…a lot! God has continued to answer our payers and bless Grey through every hurdle, and once again, He is faithful! Grey opened her left eye last night and opened her right eye today! Hallelujah!
Our faith continues to be tested and strengthens as God continues to demonstrate His faithfulness. Allie struggled with worry over the last few days, understandably, but we know even through Grey’s trials, God has a plan with a higher purpose beyond our understanding. God is faithful…always!
A week ago, I wasn’t sure when I would be able to hold this sweet precious angel of mine. Today, day 15, was not in my mind at all. Thankfully, God had other plans and He blessed me with this beautiful gift.
Last Sunday was the worst day we have had by far. Everything was up in the air and doctors were concerned so much about Grey’s lungs that they had to be honest with us, her condition could be fatal. It crushed us. I felt like I couldn’t breathe and all I wanted to know was the future. Me holding her a week later didn’t even seem to be an option.
Praise The Lord we are here now and Grey is doing as good as she can at the moment. I still don’t know the future and I am still holding my breath, but a song keeps coming to mind…
When peace, like a river, attendeth my way, When sorrows like sea billows roll; Whatever my lot, Thou hast taught me to say, It is well, it is well with my soul.
(Disclaimer: bare with our iphone video taping… it’s not the best but you get the idea)