We did not hear from Dr. Kays today which is a big bummer. I’m hoping tomorrow is the magic day.

Ella and I will be spending a majority of the day at The Children’s Hospital. She needs blood lab work done again, so we will be heading to get that done first. Once we finish, she has a hearing test scheduled. This is a follow-up to the initial one performed in the NICU at Shands which she passed. Babies that have been on ECMO are more likely to have hearing loss, so it is something that we always have to test regularly. Finally, we have an appointment with the pulmonology department. We have not spoken since the recent hospital stay. It will be interesting to hear their perspective on Ella’s current state.

I tried to wean Ella’s oxygen today around 2pm and watched closely. The change is not immediate, but within 2 hours, the pulse oximeter was beeping almost constantly. Her saturation is fine, but her heart rate is set to alarm at 180 or higher. So, I increased her oxygen back to 2 liters and within several minutes, her heart rate decreased. Once again, not sure why her heart rate is so elevated except that it seems that when she is working harder, her heart rate is higher.

We met a nurse today from the home health care agency; they sent her to see if it was a match for both parties. Unfortunately there was no chemistry. It was not a good match. I tried to be open and we met for about an hour. One of my biggest complaints: she never washed her hands! For those of you out there that are not in the medical field, a professional that knows they are going to be around a medically fragile infant should always walk in your home and immediately go to a washing station to de-cootie themselves. Anyway, that was a bummer that it was not a match. We’re hoping that they have someone else that might be a better match.

There are two other CDH babies that entered the world over the last two days. One has already passed and the other is still fighting for her life on ECMO. It is not important to know their names or details, but please say a prayer that the Lord would wrap these babies and their parents gently in His love.

It was not that long ago when we were walking a similar path. Today, one year ago, Ella had her repair surgery.

Most would have thought the worst was over and things would slowly get better. We had no idea that we were in for 5+ more months in the NICU. And yet, here she is today. Not feeling 100% well, but still smiling.

As always, just trusting in the Lord for His perfect timing and provision. If nothing else, this journey has taught us to seek, obey, and leave the consequences to Him.

Colossians 1:10-12
And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light.