Thoughts on the CICU

Trixie has been home from the hospital for about three weeks. Having her home seems so natural, and I've loved how quickly the boys have adjusted to her being in our family. Even Felix, who at first was not really thrilled about having her around, always makes sure that Trixie comes with us if our family is going somewhere. (We haven't ever come even close to forgetting her, but even if we did, Felix would remind us frequently that the baby should come with us.)

In the time since we've been home, I've thought a lot about her time in the hospital, especially the days in the CICU. I have been filled with gratitude for all the things that went well for us while we were there.

First of all, I'm constantly in awe of the nurses, both in the CICU and on our regular floor. I never once encountered a nurse who was rude, rushed, abrasive, inconsiderate, or indifferent. They were always willing to answer my questions, and I ask a lot of questions. They were always helpful in every way, and I felt confident that even when I wasn't around they were doing their best for my daughter. It was such a reassuring feeling to know she was always in good hands.

While in the CICU I ran into a lady from my neighborhood whose son was born with hypoplastic left heart syndrome. Basically, the left side of his heart didn't function, and he required major surgery a few days after he was born. I didn't know the woman personally, but I recognized her, and it turned out she knew my boys because she was friends with their babysitter. The day after Trixie was moved out of the CICU to a regular floor another boy from our neighborhood was admitted to the CICU. He was born with coarctation of the aorta, which means the aorta was too narrow, and he also required open heart surgery. Again, I did not know this family personally, but I recognized them, and I know they are also friends with my boys' babysitter.

Neither of these families knew their sons had heart defects until after birth. (I'm not sure how they missed the hypoplastic heart in the ultrasounds.) Both boys were life-flighted to the hospital shortly after birth. I can't imagine how frightening the whole experience must have been for both families. It made me all the more grateful that Trixie's heart defect was detected early, and that we could avoid open heart surgery for a while.

I witnessed some great sadness in the hospital. I saw a woman weeping in the elevator. The one night I stayed in one of the sleep rooms attached to the ICU waiting room I was awoken by a waiting family sobbing. I had noticed them there quite late in the evening, and I figured that a loved young person had either been in an accident or had taken a turn for the worse. Hearing their sorrow in the middle of the night was absolutely gut-wrenching and is something I will never forget. This was less than 48 hours after Trixie's catheter procedure, and it made me so grateful that everything had gone so well for her.

The next morning in the CICU I watched as doctors and nurses literally ran to treat a baby who had gone "code blue." Again, it was a very traumatic scene for me, and I didn't even know the child or her family. It was short, and the doctors were able to revive her quickly, but  it was a scene that I will never forget. And for the second time in only a matter of hours, it made me grateful that my little one was doing so well.

I don't know that I'm usually comforted by "it could be worse" scenarios, but spending time in the CICU had that effect on me. I know that eventually we'll be back there. Treating Trixie's heart defect is something that will go on over the course of her life. Still, I'm grateful that her heart condition was detected early and is so treatable. Her life as a newborn right now is pretty normal, and it will continue to be fairly normal. I really can't ask for more.

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.

Trixie's Birth Story

Birth stories can become insanely long. I'm going to try to keep this one pretty short.

I called the hospital bright and early to see if they still had room for me, and they said yes. I gathered some of my things and headed over. Eric stayed behind to wake up with the kids and take them to the neighbor's house.

The nurse got me going on an IV and my doctor broke my water. I was dilated to a 3 and about 70% effaced at that time. Eric arrived, and we watched some episodes of "Parks and Rec" and later began watching True Grit, which I purchased for the sole purpose of watching during labor.

The baby's heart rate was low, so they had me lay on my side and gave me an oxygen mask. The mask smelled funny. It was a little hard to hear over the whirring of the oxygen. I was not a fan, but the baby needed it.

As the contractions started to be bothersome, I asked for my epidural. With Ike I waited a while, but this time I didn't fight it. In my previous two experiences the epidural did not slow things down, and I was a much happier human after getting it.

The anesthesiologist came and gave me my epidural. Several minutes later I was not feeling numb at all. He came back to check its efficacy and agreed that it wasn't working. He removed it and tried again. By this time the contractions had picked up, but they were still not too bad.

Once the second epidural was in place I could tell it was stronger on the left than the right. I mentioned it to my nurse (who was really fantastic, by the way), and she suggested it was because I was lying on the right side. She helped me roll to my left, but it did not change things.

Meanwhile, the epidural caused my blood pressure (which tends to be kind of low anyway) to drop a lot. I got a total of four rounds of epinephrine, and eventually my nurse called the charge nurse to come in.

Around this time I was feeling a lot of pain and pressure, and my biggest worry was that the anesthesiologist wouldn't have time to come in and fix my epidural before it was time to deliver. This was a legitimate concern. As I noticed the pressure intensifying, I asked to be checked. The charge nurse checked me and said I was a 9 and 100% effaced. There was a flurry of activity as they called my doctor and his med students and the nurses to get ready. Everyone had to get scrubs on because I had to deliver in the operating room. The hospital has a few delivery rooms that have windows directly to the NICU (newborn intensive care unit), but all those rooms were occupied, which was why I got to deliver in an operating room.

Although the epidural was working somewhat, it was definitely not 100%. My guess is that it was probably about 50%-70%. I was wheeled into the operating room at 2:17, and our daughter was born at 2:24. It was not a very long amount of time, but it felt like eternity. At one point one of the many, many, many people in the room told me to open my eyes and look down, but my gown was bunched up, and I couldn't really see the baby.

Because of her heart defect, they took her away immediately to the NICU. They showed her to me briefly, but I was too dazed to really appreciate it. Everyone had commented on how much hair she had, and I did notice that. We took care of some post-birth matters in the operating room for a few minutes, and then we went back to the room I'd been in most of the day.

A few minutes later, Eric got to go to the NICU and see our baby. We learned she weighed 7 pounds 3 ounces, and she had a lot of hair. She was doing really well, all things considering.

 

After a few hours the NICU team was ready to transfer her to Primary Children's Hospital (PCH). The transfer team brought her to see me in my room, but she was in her incubator, and I was in my hospital bed, still unable to walk from the epidural. (You'd think an epidural that didn't work very well would wear off fast, but no.)

A little while after the transfer team took Trixie to PCH, I got moved to my post-delivery recovery room. Eric's parents came to visit, and they brought our other kids. We all headed to the cardiac intensive care unit (CICU) at PCH to visit Trixie. It was bad timing because we got there around shift change, and only the parents are allowed to visit for that hour window. Plus, right when we got there they were doing an echocardiogram to determine if the pre-natal diagnosis was still accurate. The boys were understandably nervous about their new sister. (Felix was particularly concerned about the blood around her belly button and the fact that she wasn't wearing any clothes.) We did manage to get each brother to touch her and talk to her. (Both were happy to speak to her but reticent to touch her.)

Then, the doctors were doing rounds. Then the cardiologists wanted to speak to me and Eric about the findings of the echocardiogram. Finally, finally, finally, about 7 hours after her birth, I got to hold my Trixie.

There were so many tubes, and the giant IV sticking out of her forehead was very sad, but I was so happy to finally meet her and hold her.

The days since then have been a bit of a whirlwind, but she's doing well, and I'm sure I'll post about them soon.