Day 16, 17, 18: God is Faithful…Always!

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!

Dad's first hold.  So tiny!
Dad’s first hold. So tiny!
Wink!
Wink!

15 thoughts on “Day 16, 17, 18: God is Faithful…Always!

  1. You do not know me but I have been following your miracle through Cate Morgan. I am silently praying everyday for your family.

  2. I find myself praying for this little miracle several times during the day. God works great miracles, and with HIS will, Grey will continue to grow and gather strength and vitality. Please know that you have many prayers coming your way to help sustain you.

    1. God bless you all as each day passes. God is good and I believe is working a miracle in baby Grey!! We are praying daily for a blessing in your lives.

  3. Hello sweeties,

    Loving all 3 of you today and asking Yah’s blessing, peace, and joy for you. Nana and I are keeping up on your news and reading it to our customers….our captive audience!! tee hee.
    We are remembering you before the Father……….just a small part of the “army.”
    I got to chat with your mama (ryan) on 1st Fridays, got a little update from her and got to give her a great big hug and kiss on the cheek. It was so good to give some love and support to the Busha (sp?).
    Take care and hugs from all of us at home.
    xoxo
    janele 🙂

  4. So happy to hear all of the positive milestones that Grey is achieving.: eyes are open, vent is off, feelings are going well and ivs are out. As a nurse and a former NICU mom, all these things are so encouraging, and I rejoice along with you. God is so good! I am also glad that Ryan got to hold her too. Keeping you all in our prayers.

  5. Oh what wonderful news, especially about her opening her eyes. So glad you have both gotten to hold her now. Love reading about her. Praying for all of you.

  6. God is so amazing! I love how strong and what a fighter Grey is. Every time I read your posts I just cannot seem to get through it without tears of joy. Thank you so much for sharing her stories! <3

  7. HE is faithful!! I can’t get over all these answers to prayer! Im so thrilled for Grey! What a fighter! Love that wink!!;)

  8. YEAH!!!! I love you Ryan got to hold her, & that we all got to see her beautiful eyes!! It brought tears to mine. 🙂 We are all still praying fervently here for you all & can’t wait until we can make it up to the hospital to meet her!!

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