March 13-23 2015

They warmed her and she came more alive and feisty. She would get upset when she heard other babies crying. They noticed she was having absent seiszures, the EEG would see it but the video could not detect anything. They put her on seizure medication and wanted to keep watching her.

But now that she was warmed we were able to hold her for the first time! And try the bottle!

They monitored her all day Friday the 13^th and into Saturday the 14^th. They increased the seizure medication a little more and by Saturday night we could finally take the cords off her head which made holding her so much easier. Scott slept at the hospital every night until Monday the 16^th to be near her. We were definitely there more than most parents, it seemed like we were the only parents in the NICU most of the time. We constantly did kangaroo/skin to skin with her to help bond and give her good energy for her brain and body to heal.

Sunday March 15^th was the first time she had all the tubes and wires off her face! They had to put the feeding tube back in for a little while but it was still nice to finally see her face without tubes.

Monday the 16^th she had her an MRI. They said the damage they saw was what they would have expected from HIE. But that MRIs are not the best determination of a kid’s outcome. Some kids have horrible MRIs are do well while others can have good MRIs and do poorly. Said we would need to do another one in a few months once the dust settles. This was the first night that Scott slept at home.

She did not pass her in-hospital hearing test, twice. This was so devastating to us at the time, Scott is a musical person and E is as well. We often sing together or even play instruments and sing silly songs. So the idea that C may not be able to participate made us really upset, I was more upset for Scott, I knew how much the idea that she may not be able to hear upset him . Looking back it was just one of the first heartbreaks and we would take her only having hearing troubles over all of the other diagnoses we will receive later.

The rest of the week we kept working on feeding. They were big on the number of times she peed, that she could breathe steadily, and that she was gaining weight from eating from the bottle. One doctor told us that kids who can be successful with the bottle within a week are more likely to succeed… so that was our goal! She drank from the bottle and also from the NG tube. Later in the week they removed the NG tube so that she was bottle only for the weekend. The entire thing was exhausting, stressful, and emotionally draining. It all felt like a really bad dream. We expected our perfect little girl that we could take home this time I would be able to breastfeed, this time would be easier, this time would be perfect. But none of that happened and it all felt like a bad dream, none of it was real. Come Monday March 23^rd she had met their goals for breathing and  weight and they were ready to let us take her home with tons of doctors appointments.

There were two nurses who we bonded with the most, Cathy G and Ashby and we were so grateful for being able to meet them. Cathy would find clothes or blankets to make C be a baby and not a naked baby on machines. She was so caring and gentle. Ashby made a footprint name sign for C one of the first nights she was there, not only was it a great keepsake but it helped make her room a little more homey while we were there. There were other great nurses but those two will have a special place in our hearts forever.