Day 29

Seriously, it’s been almost a month? Wow… How far we’ve come. Finley’s ECHO went great and her pressures are way down in her heart (another answer to prayer!). The cardiologist wants to keep her on the Sildenafil for the next few months though to be safe, since PH can come back. She is up to 35ml for her feeds (needs to be at 90ml by bottle or breast to go home – I mis-typed in a previous entry 150ml) but only getting 12-15ml by breast before she tires. We met with an OT today who did an assessment of Finley’s body/muscles and gave us some exercises/massages to do with her to help some of her body mechanic issues from being sedentary and drugged for 3 weeks.  She is off the Morphine, but still gets some to help her through her withdrawl.

Overall she is doing awesome – the nurses, doctors, and surgeons keep commenting on how amazed they are at the progress she has made and at the speed.  I looked at her lung xrays from 4 days ago and it is amazing – her left lung is only slightly smaller than the right. The nurse said if you couldn’t see the plug attachments you would never know she had CDH. So thankful that she has so much lung!

Thank you for the continued prayers.

Specific prayer requests:

Feeding issues – for her body to be able to tolerate the increased feedings (they are increasing 5ml every 8 hours), and she has had some throwing up which causes them to pause.. Often there is bile in the throw up which means that her intestines are backing up into her stomach, which is a common problem for CDH babies – but it needs to go the other direction.  Also for her to be able to take more by breast (and eventually bottle).

Continued healing and no complications- it is such a praise that our request list is so short – God has already answered so many prayers for Finley. As Dr Bliss said, we are just on the last annoying part of getting her to feed so she can go home. To which I said, I am so happy to be at the annoying part.

Prayers also for Baby Savannah currently fighting in Florida – may come off ECMO tomorrow, and Baby Heath just born yesterday. Savannah’s family had to relocate to Gainsville for delivery and will have quite the expenses.. if anyone is in the position to make a donation go to any Bank of America into the account of “Savannah Grace Quick Health Fund” account number 898043042101. Jon and I are so blessed to be doubled covered and have a medical facility close to home – this is one way to help another CDH family.

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1 thought on “Day 29”

  1. So glad to hear she has reached the annoying part! It truly is an annoying part because your baby will get better and better until she looks just like any other baby except for the fact that she can’t come home because of the feeding. Being unable to come home because of something so simple as a feeding can be frustrating when it goes on and on and on… I hope she learns to eat quickly!

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