Seattle Children’s

Terran moved to Seattle Children’s Hospital (in style!) on Thursday. We hung out at Swedish all day until his AMR arrived in the evening. Boy was he hooked up! The transport team was amazing (driver, parametric, and respiratory). Terran’s nurse and I made sure he was comfortable and happy before they loaded him into an incubator that I’m pretty sure could make it to Mars… he slept the entire way to Children’s while I rode shotgun. Terran’s first car ride was certainly a memorable one!

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Children’s takes kids from all over the country for chronic care so they are set up for the long haul. Terran is in a single room so both Walker & I are allowed to stay overnight (IN his room!). Thursday night was my first night ever staying in the same room as Terran!! It was exhausting and thrilling and filled my heart ❤️. He woke up several times and I got to console him, change his diaper, and do the real middle of the night parent things. Walker went back home Thursday night but stayed over on Friday, the first night for all three of us together ❤️. Walker is doing such an amazing job finishing the house renovations before Terran comes home, coming to see him in the evening, and making sure Moxie is cared for. Not to mention supporting me so I can spend as much time with Terran as possible. He’s juggling so much and taking it in stride.

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Terran’s first day at Children’s was filled with meeting the team, running labs and tests, and general information gathering. The team will review all the information before making a plan. Terran made some big moves on his own- he had his biggest bowel movement yet on Friday (filled the diaper with true brown liquidy mess)! Technically that was the fourth non-urine element in his diaper but the first three were small smears and, while exciting in their own right, this was definitely a new level. Along with the stool, Terran has been audibly farting (like you can heat it across the room) which gives us both passive and active digestive evidence! Check and check! We could start feedings as early as today (Saturday)!!

Before feedings, we’re currently taking care of another important issue.. Terran is in surgery this morning to place a central line in his jugular vein. Placement of one was inevitable, but the timeline was sped up last night when his PICC line broke. I noticed it when they finally got him hooked up to TPN again (needed to go through the Children’s nutrition & approval process so he was on just sugar water for nearly 24 hours to keep his blood sugar stable). We were cuddling and the pillow was getting wet under his line. I knew it wasn’t from the bath we had given him that evening because we put a water tight dressing over the line. Turns out one piece of the line got a tear in it so the fluid was leaking out, and scarier, air could get in. The IV team think we caught it soon enough that air didn’t get into Terran (thank goodness!!). Adults can handle a few air bubbles in their veins but babies tolerance is much lower. Since the line went directly to his heart, an air bubble could cause heart failure among other things. This is a constant concern for anyone with a central line and I’m so happy we went through this scare in the hospital instead of on our own at home. Of course we’d be careful, but now there’s an extra layer of focus having seen the risk once already. They removed the PICC and put an IV in his foot for the sugar water and fats, but he can’t get TPN through an IV (too much damage to the veins). Terran was expected to have to wait until next week to get the new central line, but miracles do happen and he was slotted in to the Saturday morning surgical schedule. I am thrilled about this because it means he’ll get his TPN back this afternoon! He’ll have been off it for 2 days already so the thought of waiting until next week did not make mama happy. He’s under general anesthesia now and he has a breathing tube for safety, but they expect to be able to remove it right after surgery.

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It feels incredible to stay with Terran all day and night. While I totally understand Swedish’s NICU rules and was happy to follow them, Terran is now more stable and the rules for us are more relaxed here. We can have our masks off when others aren’t in the room, we’re encouraged to stay overnight, we can eat and drink in the room, pumping is as easy as it can be (I have my own pump, unlimited freezer space, and a daily food credit for room service under the “lactating mom program”), and all care team members come to us, including all the rounding doctors which we never miss now since we stay overnight. They make it so convenient to stay in the room that I didn’t realize until late at night that I hadn’t left the room all day Friday (except to escort Terran to the X-ray room a floor above). Today I’ll go get my car and frozen milk from Swedish to bring back here.. my first time outdoors since Thursday lol!

Every day I feel more confident as Terran’s mom and realize my importance as his guardian. So many different providers have touched his care; Walker and I are the only constants. We’ve always asked questions, but now I’m confident speaking up when something doesn’t feel right or when I want to suggest something. Everyone is receptive to our wishes and encourage us to keep driving his care. We understand so much more about his recovery, his likes/dislikes, and the hospital system that we’re finally, in my opinion, positive contributors to his care discussions. It’s a good feeling 🥰