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!