Kadence's Journey Pt. 4

This will be the happiest of "The Journey" posts, although it was almost the most frustrating point. After Kadence was on oxygen they were able to start using bottles to feed her and would let her drink a little from the bottle and the rest would go into a feeding tube. It was all up hill from there! She continued to make progress daily and was such a trooper. We were able to hold her like she was actually our new baby. I made another goal for her. I wanted her to be able to come home by grandpas birthday. It sounds like things were going perfect right, so where does the frustration come from? Almost right after we were able to hold her I got a fever. If you have a fever you aren't allowed in the NICU. It also meant another trip to U of U's ER. They weren't able to figure out why I had a fever so they just sent me home. My fever kept climbing and it got really scary. I had David and his dad give me a blessing and within an hour my fever started to drop. I was happy about that because it meant I didn't have to return to the ER. I couldn't believe that again I was having to miss out on seeing my baby. She was well loved and had tons of visitors, so I knew she was getting taken care of.

We got news that Kadence was going to be transferred to Logan Regional Hospital because she was just working on learning to breath and eat which they were equipped to handle. We were SO excited!! We would finally be able to sleep in our own beds! The day of the transfer we received a call that she wasn't being transferred. Then we received a call that said she would be transferred, but not to Logan Regional. One of the visitors of another baby had been exposed to the chickenpox which meant Kadence possibly could have been too. She needed to go to isolation and Logan Regional doesn't have isolation rooms in their NICU. So they told us she would be going to McKay Dee. We were ok with that because at least we didn't have to make the drive everyday. Before Kadence left, they did a vision test and also did a chromosome karyotype. The vision test came back that she couldn't see at all. She didn't respond to the test at all. The person who administered the test said that it was very apparent she could see and that her body must have been trying to rewire her connection between her brain and her eyes. He told us not to worry because infant brains are able to rewire bad connections very easily. Not worry?! Ya right! They came to talk to us about her EEG, and told us that she had two lesions in the white matter of her brain. They also told us that it showed she was brain dead at the time. Luckily we had a moving happy little baby in our arms while they told us. This would explain why her brain was needing to do some rewiring. Her chromosome karyotype was done to see if they could see why she got hydrops. It came back totally normal. She was getting better daily and we were wanting her to go faster so we could take her home. They would let her come home on oxygen, but they needed her to be eating well before they could release her. That is what took the longest. David used to sing Eye of the Tiger while he fed her and it cracked me up! The time finally came to do her carseat test. This is a test to see if they can handle being in the car seat. They keep the monitors on and see if it causes their oxygen to drop or their heart rate to increase. For some reason they took off Kadence's oxygen to do the test. We left to get our things packed up and were so excited we would be taking our sweet baby home. When we got back to the hospital they told us we couldn't take her home for two more days....Grandpa's birthday! They said that she did great without oxygen to their surprise and would be going home without it. They have to monitor them for 48 hours to make sure they can handle room air so she would need to stay in the hospital for 2 more days. We felt defeated, we were so excited to finally go home and sleep as a family under the same roof and now we had to wait. We knew it was best in the long run and were excited we didn't have to take home oxygen. She did great without oxygen and on August 5th we were able to take home our sweet 5 pound 9 ounce baby! During Kadence's month long stay in the hospital David and I learned more medical terminology than we thought we ever needed, how much family meant to us, and how much we meant to each other. It helped us to grow fast in a short amount of time and we learned how strong a tiny little baby can be!

Here's David feeding Kadence for the first time at PCMC

Here's how tiny her little hand is compared to mine

She used to just look at us the whole time she was awake

Her car seat test

Sweet little angel