Two steps forward one step back

After a really good evening of being awake and having a little bit of oral feeding with daddy, this day has been a tough one for baby Isabelle. The doctors are concerned about her temperature as well as her fast breathing rate, so they ordered bloodwork and an x-Ray to see if she has an infection and Isabelle needs to go back on antibiotics. Isabelle’s little veins are really hard to get blood from and this morning they had to try a few sites before settling for one in the skull. It is heartbreaking to watch as she is struggling. The omphalocele itself is healing well but the umbilical cord stump is starting to look “boggy” so they had to wrap it separately. We then changed a diaper and found blood. The doctors are worried it came from the GI tract and so they have decided to stop feeds for 24 hours. The geneticist then came by and poked and prodded Isabelle to check for any physical “defects” other than the omphalocele. And finally after all that was done Izzy was put back into her nasal prongs because her oxygen saturation level had dropped off steadily. After a gruelling day little baby is finally getting a rest.

It is really hard for me to put things into perspective while in this situation. In the grand scheme of things probably it’s not that big of a deal that she has to be off her feeds for one day. She is still getting her margarine tube and liquids, and we were only feeding her 9ml every 3 hours. But every little success feels like a huge success and every little setback feels like a huge setback. I am not sure how to regulate my feelings in all of this, but it’s exhausting to get thrown back and forth. Hopefully the next day will bring some better news.

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