Happy 4th of July from the Powell’s! We are so thankful Grey is here to celebrate with us! We never would have dreamed she would be here this early, but she is and we are celebrating that!
She has had a good day today and continues to get weened off the vent. They are trying NAVA again today so hopefully her lungs will be strong enough to handle this change and she will excel on this setting.
We hope you all have a wonderful 4th of July with family and friends!
Today has been another good day in the life of Grey. As of now, she is responding well to steroids and her ventilator settings continue to decrease. Praise The Lord she is part of the 80% who respond well to steroids. They continue to tweak the vent settings to meet her needs according to her blood gas levels and oxygen saturations. Grey likes to play a little game with the nurses. Her oxygen sats are perfect while the nurse is in the room, but as soon as she walks to her desk Grey starts “dinging” for her to quickly return. Ryan thinks Grey is already starting to thrive on all the attention. He even told the doctor, “she gets it from her mother.” I don’t know about that.
Doctors continue to be stumped about her eyes being completely fused. I watched the doctor try to open her eyes this morning and they are nowhere near ready. They decided to send blood work for genetic testing. We probably won’t have those results for a few days. We are waiting patiently to see if this provides any more insight as to what may be causing this. The doctors do want her eyes open by week 28 for eye sight development. So if things do not improve in the next week or two they will have to go ahead and surgically open her eyelids. We continue to pray that she opens those little peepers on her own time. We are patient, but so anxious to see them!
Speaking of seeing new things… As I walked in the room today I noticed Grey was lying on her tummy. This was the first time she has ever been placed like that. I was overwhelmed with emotion because I realized for the past 13 days I have not once seen the back of my baby’s body. I texted a picture to my friend with which she responded, “Little things are BIG things!” Often, I feel like I get so focused on the “big things,” that I forget moments like seeing her tiny little back are such a big deal. As a mother you examine your child from head to toe. You know everything about them. Today I rejoice in the little things, like seeing her back, because it actually is a big thing to me and I should recognize these moments and be glad in them.
Grey had a good day today! She was moved off the oscillator and back onto the PRVC ventilator. She has been stable on the new vent and her blood gas levels look good; however, the high pressure levels and oxygen concentration she is requiring from the vent are still too harsh for comfort. The damage these high settings are causing to her lungs put her at risk for chronic lung disease. Doctors started giving her steroids this evening to help develop her lungs faster. This will be a two week treatment regimen. We are praying that she responds well to the steroids and grows strong enough to reduce her reliance on the vent as soon as possible. She also restarted feeding today and is tolerating it great! The update is short and sweet today…just like our baby Grey!
Today was another fairly stable day; however, the x-rays show the high ventilator setting that she is on is hurting her lungs with scaring and inflammation. The plan is to begin steroids tomorrow to help further develop her lungs and lower the ventilator settings. Please pray this works. The doctor stated that 80% of babies respond very well with this treatment. So Grey, please respond to this treatment and stop making the doctors stress out about you!
The results from the endocrinologist about her thyroid came back and was insignificant. They are still curious as to why her eyes are still fused and her sutures have not narrowed. This, in and of itself, is not necessarily concerning; however, the fact that they don’t know why this is happening (or not happening) makes them concerned. They are now planning to perform genetic testing to see if this will give any insight. Please continue to pray that God gives the doctors wisdom and helps Grey continue to develop in these areas.
As always, I want to thank you all for your continuous prayers and support throughout this process. God is placing so many people in our lives and showing us how much they love us, even complete strangers. I want to leave you all with a story that really touched us.
If you remember, Ryan’s sister Rose posted a picture to facebook of him looking at Grey under a green plaid blanket. You may have noticed that blanket was very “boyish.” I immediately needed to change that. We all know Grey is not a lumberjack. She is a princess.
We went to Hobby Lobby and bought a pretty pink blanket with white polka-dots to replace her boyish incubator cover. While checking out we met a sweet cashier who asked if someone was having a baby. We replied that we had a baby at 25 weeks and we would be staying in the NICU until September. She shared an encouraging story with us and then we were on our way.
The next day we were greeted with an envelope that was addressed as follows:
” Attn: NICU- For the Mom + Dad of the 1 1/2 week old baby girl who are making her a pink blanket with white polka-dots”
The staff quickly recognized that this was addressed to us. They gave us the envelope and in it was a card from the sweet cashier at Hobby Lobby. She stated she was praying for us and gave us a gift card to a nearby place for lunch. We were so touched by this because she was a complete stranger that went out of her way to show that she cared. This is just one of many examples of the love that we have received since having Grey. Lindsey, if you’re reading this, Thank You!
It’s convicted me to be more aware of others and what they are going through. I want to be more proactive in showing my love and support for them. God is teaching us so much through Grey already. We are so thankful for her precious life.