Day 25: Two Steps Forward, One Step Back

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.

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Curled up next to dad’s watch.
Holding onto dad’s finger.

10 thoughts on “Day 25: Two Steps Forward, One Step Back

  1. Good Morning to you and allow me to thank you for sharing your fearfully and wonderfully made baby girl’s journey. I am a friend of Loni Leevers. Of course being in the NICCU, you probably hear success stories all the time of extremely premature babies. One of my dearest friends delivered her twins at 26 wks gestation. While every day was as you stated in today’s post “two steps forward, two steps back,” these miracle babies are now two years old and rotten!!! They spent jus over 90 days in the NICCU, complete with multiple surgeries and extremely scary moments. Having said this, and showing you there is hope for those micro premises, and no matter how large your obvious faith in God is, as a human being, and a parent, it is natural to experience that worry. When you think of your birth plan, and taking your baby home, you never think about this! So, I want to tel you, it’s ok to be scared. Rejoice in the milestone moments, cry in the heart stopping moments. When it comes time for skin on skin bonding (if she already isn’t to that point), that can be so healing and comforting for both you and little Grey. Love her everyday and talk to her because she gets stronger through your voice. Know you have so many surrounding her in prayer, which is extremely powerful!! Thank you again for sharing , and all the love to your family.

  2. Litte Grey is a beautiful miracle. When I was born I weighed in at 2 lbs and some ounces way back in 1959. At that time I had to be flown to a larger hospital (Michael Reese, in Chicago) to find care. The practices were very different at that time, and technology was very limited.
    I survived and have lived a very full life. Therefore, please keep your hopes high and believe God has a purpose for Grey.

  3. This is the beauty of God’s Family! Though we’ve never met, and probably won’t until Eternity, I will be praying for all of you! I am 14 1/2 weeks pregnant right now, and see sweet baby Grey’s pictures make me marvel all the more at the miracle of life…life given by our Great Big Daddy! May He continue to bless you and your sweet peach! Prayers from Indiana!

  4. I could not even begin to comprehend everything you are going through and the emotions that are tied to that. After reading your blog I immediately thought of this video that was posted 8 months ago. While your story is uniquely tied to you, this is a reminder that there are others who have had a similar struggle and the Lord has led them to immense blessings. My prayer is that this video will give you more courage then you have already displayed and that this will be a time you can look back on and see how faithful a God we serve.

  5. You’re story is very touching and hits close to home. I just had twin boys last December at 26 weeks after a complicated pregnancy and spent three months in the nicu at norton suburban dealing with most of the issues you all are going through. I know it’s the most difficult experience. Our babies are now home and a bit of a miracle. We dealt with oscillators and mrsa bacteremia and intolerance of feedings and the roller coaster that is the Nicu but in the end we continue to be very fortunate. Sometimes it helps to hear positive stories. I know that helped me when my water broke at 18 weeks and I was told that I would go into labor in a few hours and lose them both. Through a lot of prayers I held out 8 weeks on bed rest which is where our nicu story began. If you want to chat message me on Facebook. Otherwise I will pray for you and your baby.

  6. Lord, give us this time to continue to build faith. We know YOU have the great plan for little Grey’s life. You are our wonderful, counselor, mighty God. We ask that you give Grey strength, and that you will normalize her potassium levels. Help her to grow. Give her wonderful parents strength and endurance.
    Please hear the prayers from all of us. Amen.

  7. She is so beautiful. May God continue to strengthen Grey and grow her strong! Thank you for sharing your journey so that we can pray for her and both of you. And for allowing us to see God at work.

  8. Such a little miracle! Remember God has done great things with something as little as a mustard seed. Our son was 2lb 9oz when he was born. Kangaroo Care that baby girl as soon as you can. We did everyday for 3/4 hrs at a time. Studies have shown that this helps these little ones just grow and grow. It would take about 10 mins to get everything set up and ready to lay her on my chest but it was so worth the wait!! He needed the full 3/4 hrs of time to just relax and sleep. Movement can be so stressful to them but this time with mom or dad is soooooo amazing for you all! I found a babysister for our daughter and would just hold Ethan. Sitting reading books ,relaxing, praying over him, and getting to know other families in the NICU that were going thru the same things.
    Praying for your family and for the medical team that continue to make all the right advancements for your precious one! God Bless

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