Day 9: In Christ Alone

Today was a tough day…  We went home last night in high spirits as Grey was stable and things were quite calm most of the day. But as we were getting into bed we received a call from the doctor telling us Grey had taken a downward turn. Her oxygen and blood gas levels, sugars, and GI x-rays were not looking good. They told us they were going to give more antibiotics, stop feedings, start a blood transfusion, and monitor her oxygen and CO2 levels closely. When we arrived this morning, her vent had already been switched to the oscillator and they added nitrogen gas in effort to improve her oxygenation. They had two main concerns:

First, because of her extreme sugar levels they suspect a rare fungal or bacterial infection that could have possibly been acquired in utero. They suspect a rare strand because it has not been caught by their first line prophylactic defenses. They gave her vancomycin followed by broader spectrum heavy duty antibiotics (azithromycin, meropenem, and diflucan) until they get the analysis of the blood culture back (24 – 48 hrs.). The doctor told us they haven’t seen this type of infection (if that is what’s going on) in the last five years.

The second concern the doctor had relates to the difficulty Grey is having oxygenating and ventilating. At this point, the medical team has ruled out almost all theories for what is causing the problem. When we arrived in the morning the doctor had a serious conversation with us explaining that they suspect Grey is suffering from pulmonary hypoplasia (incomplete development of the lungs resulting in reduced size and number of alveoli). This is a severe disorder in preemies that is extremely difficult to treat and can be fatal. Over the past several days the doctor would say “I’m not worried so you shouldn’t worry.” This morning they said, “I told you that I would let you know when it is time to worry…I am now worried.”

We were clearly crushed at this news and the thought of our losing our daughter or her suffering from major lung complications and possible neuro damage if her hypoxic state continued. This was our lowest low so far. We decided to go to church as we originally planned. With our emotions on overdrive nothing rang truer than the lyrics to the worship song we sang below:

In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

We know we serve a loving God who does good for His people. Nothing is more comforting than knowing you have the creator of all things, whose wisdom and righteousness transcends all understanding, in control. Thank you Tyler for a great message and for lifting Grey up in prayer during the service. We also want to thank the entire NECC community for your prayers and support.

News did get better when we went back to the hospital in the afternoon. The doctor said they took a risk in trying a different approach. They turned the ventilator pressure setting up very high (dangerous levels for such small and fragile lungs) to see if they could force the closed lung/alveoli to pop open. Praise the Lord – for the time being it seems to have worked! Grey began oxygenating better and her CO2 levels dropped from 120 (very dangerous levels) to 42 (very acceptable). While these levels continued to fluctuate on the high end the rest of the day, this was great news because it indicates that pulmonary hypoplasia is unlikely the case. The rigid lungs would not have reacted well to the high pressure if it was. Doctors are now trying to determine the appropriate ventilator levels by slowly weaning her down on the settings.

God answered our prayers! To Him be the glory! Amen!

20 thoughts on “Day 9: In Christ Alone

  1. However, Wang Yongjun, head of the Finance Research School at the Central University of Finance and Economics, said allowing local finance departments to invest local pension funds can also diversify investment risks.

  2. ALLIE, our family is praying for all of you, this baby is a little fighter! I’m in tears reading each day. God is good and is protection is over you. <3

    Stephenie

  3. How precious and fragile baby Grey is! I do not think God could love anyone more than she! Our prayers are with you, while we all wait with hope and faith that Grey will keep improving.

    Sincerely,
    Mike and Sharon Kotz

  4. Our prayers are with you all. We know what a difficult time this is for you.

    Love,
    Paul & Kathy

  5. The Spencers are on our knees and giving praise for your good news of yesterday and praying for continued strength for all of you and for Grey who is precious in His sight and placed before the throne of Grace as we call the power down just for her and all who are caring for her.

  6. Thank you for sharing your thoughts with us!! I check for updates frequently as I have the time!! Being by the lakeshore this week has reminded me of how great Gods work was to create nature and mankind both!! Believe in your faith and it will guide you !!

  7. Our family will continue to pray for all of you throughout your NICU journey. Praying for your strength through the bad days and rejoicing with you in all the encouraging milestones to come.

  8. Continue to pray to for Sweet Baby Grey. Thinking of you all constantly. Thanks for keeping us updated! Can’t wait to meet this little miracle!

  9. Praying for your sweet family through the ups and downs. So glad you are holding on to your faith. I know that you don’t know me but since we just went through so many of the same things with our micro preemie I feel connected to you and baby Grey.
    My heart is aching and rejoicing with yours!
    Sara Nycz

  10. Praise The Lord for her much improved levels! Thankful for these posts! Continue to rely on HIM! We are praying !! Go Grey! We love you!!!

  11. I was so sad in the beginning of yesterdays blog but by the end I was smiling again!! I pray everyday for your beautiful baby Grey!! She is truly a gift to you ALL and someday this will all be just a loving memory you will be able to share with your healthy baby girl, Allie and Ryan!!

  12. I praise God! He has given you His strength to carry you , and I’m so grateful of His comfort during this trial. He is holding you all in His Love and Care, and I am lifting you and Grey in prayer. We walk with you in our hearts, and share in your tears….we cheer for each victory, and trust in His ways. You are Loved.

  13. To the parents of God’s precious baby Grey…

    I am a friend of Haileys and I am praying praying praying for this beautiful baby girl.

    I wanted to share with you what I did on June 6th. I attended my cousin Jacks high school graduation. He graduated from a Christian school in Duluth with honors and is attending NDSU in the fall.

    Why do I share this? Because he was born on September 9th, 1995 at 24 weeks 5 days. His weight was a little over a pound and he had many many issues to overcome in those first few months (ventilator, open heart surgery when days old, pneumonia, etc.) He was in the NICU until Christmas Day that year and he has done fabulous ever since.

    I pray that Greys story is the same. Thanks so much for keeping people like me who have never even met you but love this little girl updated.

  14. Dear Ryan & Allie, The Lord is Good!!! Our thoughts & prayers are with you 24/7! Grey is a fighter like Busia is! All our love, Aunt Cathy & Uncle Phil

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