Big Move

The Floor

Yesterday, out of the blue, they told us that they thought Shirley might be able to go to the floor! We were shocked! Just a few days ago they were talking wth us about being prepared to stick it out in the CICU. Heart failure was the concern when they were talking about extending our stay in the CICU but after the heart failure team (HFT) did their assessment they decided that there was no need to keep her there. One of the HFT docs was very impressed by Shirley's physical appearance despite her decreased heart function. She thinks Shirley will do great on meds that manage her heart failure. Digoxin is still the plan for Shirley's extended care with weekly check-ups at SCH after we leave. We are still at the hospital and are guaranteed at least five more days because of Shirley's UTI and IV antibiotics but the doctors aren't really sure what will keep us here after that. She didn't say to bank on being discharged on that timeline but that it is their desire. For whatever reason hospital policy says that Shirley needs to be on IV antibiotics for 7 days and when this was mentioned during rounds this morning a few doctors raised their eyebrows and concerns. She wasn't even on antibiotics that long after surgery. Thankfully though they pinpointed the strain causing the infection and have a very specific antibiotic that won't just have a field day destroying everything in it's way.  Little Shirley is certainly back to being the happy girl she was before the infection and it's great to see.  



The big victory yesterday was that she is no longer on any respiratory support. The HFNC is gone and Shirley's oxygen saturation and her work of breathing are great..  Shirley has been on some sort of respiratory support since surgery and it's nice to have more of that cute little face exposed. Things can change in the blink of an eye here but I think the HFNC is gone for good. Also, now that she doesn't have a heavy tube attached to her face and head you can hold her with much greater ease. I walked around with her in my arms, put her on my shoulder, and held her out in front of me easily. That may all sound like elementary stuff but when you haven't been able to hold your child comfortably and without worrying about what line you might pull out of their body or the many machines, it is a great feeling. It is almost like Shirley is just a normal little baby which, of course, she will never be... but there will be times when she seems very average indeed.


Shirley was able to practice breastfeeding again yesterday and she did a great job. She still isn't ready to be fed by breast alone but with time we are hopeful she will be able to handle it. Shirley is currently fed 17ml/hr of breast milk 24hr/day. That translates to just over 13oz! Her stomach is never really that full. When we bottle feed her we have to use an "ultra preemie" nipple that only allows a very small amount of milk to pass through. This is all in an attempt to train Shirley's stomach. Full feeds at the breast would be like a firehose compared to the flow rate she is accustomed to receiving. I was able to give her a bottle and watch her suckle away as she just stared at me! Shirley also just started bolus feeding today so instead of the 24/7 feedings they will begin to up the flow rate (ml/hr) and have a break in between feedings. This will help her get used to the feeling of being hungry, create a greater desire to feed orally, and allow the stomach to stretch.


We are getting very excited as we get closer to bringing Shirley home! Thank you all for the continued prayers. We can't keep up with how fast things change here but we are hopeful our initial stay at SCH is coming to a close sooner rather than later.