Trixie's First Week

After a whirlwind week, Trixie was released from the hospital on Sunday, six days after she was born. This was much sooner than the original estimate of two to three weeks, and also shorter than later estimates of a week and a half to two weeks. I posted about Trixie on Facebook and Instagram during her first week, but I thought I'd also provide a brief summary of her week here.

Monday - Trixie was born and taken (fairly soon after birth) to the Cardiac Intensive Care Unit (CICU) at Primary Children's Hospital (PCH). The doctors performed an echocardiogram, and it essentially confirmed the diagnosis she'd received in utero. Thankfully, this echo showed that her pulmonary valve was not 100% obstructed, and there was a very small opening in the valve. This was good news for the procedure that would be performed. The doctors indicated on Monday evening that her procedure (through a catheter in her leg) would be performed on Tuesday. This was my first time to encounter doctors other than the one I had met while I was pregnant.

Tuesday - The team of cardiologists, including the doctor who would perform her catheter procedure, consulted together and determined the best course of action would be to wait another day before performing the procedure. Because of the hormone she was on (that was keeping her heart shortcuts open), she had frequent apnea and would stop breathing momentarily. The doctors put her on a high-flow nasal cannula, which made it harder for her to stop breathing. Her episodes of apnea greatly diminished.

We met a lot more doctors that day. It was interesting to hear different explanations for what was going on with her and what the possible outcomes were. I realized that the doctor I'd met with twice while still pregnant is definitely one of the more positive and optimistic of the team. Others were more cautious and more prone to give us the worst case scenarios. I appreciated having the different perspectives, and it helped me to fully grasp all the possible outcomes for Trixie.

Wednesday - She had her heart procedure around lunch time. Prior to it we met with more doctors, including the anesthesiologist who offered to remove the IV from her forehead and replace it with one in her hand. (YES, PLEASE!)

After the procedure we went to the catheter lab and the surgeon explained how it went. Thankfully, it was nearly perfect. It appeared the balloon opened up the pulmonary valve without doing much damage, which was excellent news. During the procedure they looked at other parts of her heart that they couldn't see well in the echocardiogram, and those parts looked good.

Trixie remained sedated for a few hours, but eventually we got to hold her again. She remained intubated through the night.

Thursday - The doctors took her off her hormone bright and early that morning. Initially it didn't go very well, and her oxygen saturation levels dropped pretty low, but after a few hours she started doing better. By the end of the day she was doing really well and the doctors were pleased with her progress.

Friday - Her oxygen levels continued to improve. By the afternoon the doctors let her start eating real food. Breastfeeding didn't go great at first, but once she figured out that eating was a thing (via a bottle at first) she successfully breast fed a couple of times.

An echocardiogram showed that the shortcut in her heart had closed almost all the way. Even with the shortcut gone, her oxygen saturation levels were pretty high. In short, her heart was doing really well.

In the later afternoon the doctors decided she no longer needed ICU care, and we went to a regular floor. It was so fast, and we were thrilled that she had progressed so quickly.

That night I stayed with her in her very own room. It was not our best night. All her numbers were good all night, but she didn't really sleep, and she didn't nurse.

Saturday - We finally got breastfeeding figured out for good. She slept throughout the day really well. We enjoyed watching the BYU game together. Also, her oxygenation remained high throughout the day.

Sunday - The doctor said we could go home! And we did! She is still on oxygen, but it's a small price to pay to be home together.