Surgery was planned for at least a few weeks out when I wrote the rant, but things changed quickly. After a nutritionist visit, our cardiologist bumped up the next appt to the following day, and requested a feeding tube. We went to the hospital overnight for monitoring. She then threw up 3 of the next 8 feedings in the day, and was looking pale and just so tired. It was bad enough that we felt like we were force feeding, but when it comes back out it feels like hours wasted again.All docs said just go to the main hospital, they'll find us a bed, and we'll hope for sooner surgery. The admission was an awful experience and we didn't get settled until 2am. They don't allow multiple parents to stay in the room under any circumstance, and I slept (barely) in the cold car in the parking garage, luckily having packed a sleeping bag last minute.The next few days were rough. Just watching feedings go by, but at least they dropped the idea of trying to force too much in. Surgery got moved a few times, and finally during Thanksgiving week we met the surgeon and handed our baby over for the procedure. The team of 10 docs, nurses, & techs that we only met a few of did their magic. The waiting is the worst part though. 8 hours away in surgery, plus another few to set up her "room" in the recovery of Cardiac ICU. At least they call us every few hours in the process with updates.For several days after she seemed lifeless. I counted 14 patches, tubes, & wire attached to my 6lb baby. The breathing tube kept her alive but made her seem like a robot. Over a few days she slowly regained the ability to breath on her own, but it took several more before the tube could come out. My wife got to hold her for the first time during this visit and we were all in tears. I think my baby had missed our arms just as much as we missed holding her.My family came to visit, but only 2 people can be in the "room". It's mostly an open pod with a wall of machines all around for breathing, up to 16 pumps for drugs, a warmer above, and monitors for all her vitals. It's not easy to prep anyone for what they are about to see with everything attached. It was also weird for me that some family first saw her during later recovery, thinking she was about the same as before, having not seen her on the breathing tube and everything else.We eventually reached the day when most connections could come out. It was a relief to see her "naked" again minus a few general monitors. We moved back to the recovery area and out of the ICU. Several more days went by as she got back into feeding "normal" life. She was still fussy when we got home, probably from some general pains, but that got better after a few days.It's now about a week at home, and today was the first sign of weight gain. She's at least feeding like a champ and wetting diapers all the time. The chart officially puts her at 0.0 percentile for weight, so we've got a lot of catchup ahead. The scar will forever be there, but it's a reminder of all she (and us) have been through. I'm glad to be past these stages, but I know that there will still be many difficulties ahead. Even among our friends and some family, they don't get how different and hard this has been, and I don't care to rant to them about it. If you made it this far, you are amazing - thank you for your support even if it's silent. Love your kids and family and enjoy your time with them! via /r/Parenting http://ift.tt/2g37Hq3
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