December 21st: Emersyn has shown huge improvements overnight. Her respiratory status is now stable and the threat of re-intubation seems to have past:) Her lungs appeared much clearer on this morning's chest x-ray and the plan for the day is to wean her to low flow oxygen via nasal cannula, and to start oral feeds. Her TPN and lipids will be weaned as the feedings increase...hopefully, within a couple days she will be on full feeds and the IV nutrition can be discontinued. We're definitely moving in the right direction now!
Evening update: Emmy has continued to show progress as far as her respiratory status and she was weaned to a regular nasal cannula today. Her oxygen requirement is down to 2L and she is doing well. Dr Nigro remains concerned about the amount of drainage coming from the chest tubes, so he ordered an ultrasound of her upper body to rule out a venous blockage- the results of that study are still pending.
We started bottle feeding today but she is struggling with coordinating the suck, swallow, breathe pattern. Her suck reflex is very weak and she rarely even attempts to feed from the bottle. When she does suck from the nipple, she immediately chokes and vomits. The nurse told me that this type of feeding difficulty is very common for infants post open heart surgery. She said that it takes quite a while to re-train them to effectively feed and often they go home with NG tubes. For now, her feeds are mainly going through the NG and I plan to request speech and lactation consults tomorrow so that I can learn how to best help her to resolve this issue.
On a more positive note, Emmy and I are getting to cuddle more now, and we love sleeping together in the recliner chair...we are finally getting some real mommy-baby time and couldn't be happier about that!
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