On April 17th, 2019 we welcomed Kate Bernadette Royer into out family. This is our journal of our journey from early on, up to her birth and beyond.
Kate’s middle name, Bernadette, is in honor of her great-grandmother. It means “brave as a bear.” She’ll need to be brave as she faces life with critical congenital heart disease.
Current Status
As of December 2021, Kate is currently a year post transplant. She has recovered remarkably in the past year. She is even at the 50% percentile for height and weight! She is currently only on one prescription drug, the anti-rejection drug she will be on her whole life. She’s still a bit behind in developmental things, but she has great therapists that she likes. Together, they are making progress on talking, eating, running, and jumping. Find out more in our journal.
An Unexpected Health Issue
The entire story, in summary
Here’s the incredibly high-level story of Kate’s medical journey. Please see the journal for more details.
Our daughter was diagnosed via the 20 week pregnancy ultrasound with critical congenital heart disease. At first, they thought she would have Hypoplastic Left Heart Syndrome (HLHS), or a too small and undeveloped left side of the heart. However, her case was borderline that could not be fully evaluated until after birth.
For her safety, she was born in the OR where all the emergency supplies were. After 30 minutes of cuddle time, she went to the Cardiovascular Care Center, a heart specific ICU, to begin a potentially lifesaving drug. She stayed in the ICU for a month and a day post birth. During that time, she had heart surgery to repair one of her many heart issues. That surgery allowed her to be stable enough to come home. Her other heart issues were still present and would most likely need to be addressed sometime in the future. But for now, we could go home.
We had two blessed months with “just a normal baby” until we had to go back to the hospital at the end of July. A normal out-patient procedure turned into an unexpected 11-day hospital stay. More issues got added to her list of problems. We came home in August with Kate on a 24 hour a day IV drug and on the heart transplant list.
Then, we had “a baby with a backpack.” She was medically stable for several months on the heart transplant list.
Around Christmas time, her condition started to change. Feeding her grew more and more challenging. Additionally, a follow-up visit on December 31st clarified that she would have to be in the hospital for many months to even get a heart. It was a gut punch kind of day.
As 2020 progressed, the amount of drugs she was on increased, while her weight plateaued. In February, we were back in the hospital for three days to give Kate a g-tube, a tube going directly into her stomach to help with feeding issues. That allowed us to keep her out of the hospital a bit longer.
The g-tube helped immensely. We were able to get her to gain weight so that she went from the second percentile to the fourteenth percentile on the growth curve.
Although she was gaining weight, it was clear that her overall condition was deteriorating. Her drugs had to change every week or so to keep her in her happy place. At that point, we hoped to keep her home for the summer so she could experience all that Minnesota has to offer in the summer.
Our stretch goal was to let her experience the early part of fall, when it’s pretty and not too cold yet. Our ideal plan was to go into the hospital in early October. Some days we thought she would never make it that long. Other days we thought she would.
August marked her one year anniversary on the transplant list. Per list protocol, the doctor requested we do a heart cath procedure to accurately measure the condition of her heart. It had been a year, and she doesn’t really cooperate for echo cardiograms, which have limited accuracy, anyway. We scheduled the heart cath for mid August. We were told that it would be a one night stay at the hospital.
Facing the cath procedure, we thought that they would look at her numbers and not let us leave the hospital. Kate has always acted way better than a doctor would anticipate looking at the condition of her heart. We packed for the long haul instead of just an overnight.
The day of the heart cath, we were shocked that they let us go home that same day. The surgeon who did the procedure said the numbers were as expected. Kate’s doctor was out of town. He would look at it later in the week.
The next day, we received a phone call from the transplant team. The transplant team and the Cardiology team got together to discuss Kate’s heart cath. They all agreed that we should be in the hospital sooner rather than later.
They suggested early September for admission, instead of October. After some discussion, we all agreed that Friday August 21st would be Kate’s hospital admission day. We did not even have to unpack from the heart cath. Dave and I still think that if they had kept us the overnight of the heart cath, we would not have gone home at all.
On Friday, August 21st, we came to the hospital late morning. We made sure to have a bit of fun around home first. They checked us in to a standard room and gave us our standing orders. Kate only has to be plugged in to the heart monitor when she is sleeping. We can take walks all over the hospital, including outside. Later that day, we moved to the best room on the floor.
We gradually settled into a routine. Kate’s sleep and medication schedule shifted to better match nurse schedule. She had a weekly schedule of twice a week therapy from four different providers, physical therapy, occupational therapy, speech therapy, and music therapy. Most days, Kate had one therapy session in the morning and one in the afternoon.
Dave and I settled into the routine of early mornings. I got to the hospital around 6:45 am, before Kate woke up. Dave got to work. He joined us around 4 pm. We put Kate down to sleep around 8 pm, then left for the night. Repeat.
Kate did great waiting and living in the hospital. She walked all over the place holding a hand or her push cart. Everyone knew her and said hi. She took some of her first steps on her own, and used more sign language to communicate. We were just waiting for a heart.
On Saturday December 12th, we accepted a new heart for Kate. She had her transplant surgery on Sunday Dec 13th. The surgery and initial recovery had more bumps in the road than we would like. On Wednesday Dec 16th, she had an additional surgery to place a Right Ventricle Assist Device (RVAD) to help her recover from the effects of living with a bad heart for a long time.
The RVAD did exactly what it was supposed to do, and helped Kate’s new heart and lungs “make friends,” as Dave liked to put it. Kate did great on the RVAD. She was able to be extubated on December 24th. Being able to hold her again after 11 days was the best Christmas present ever.
Kate was still on the RVAD, but they were starting to wean her from it. Her new heart was gettting stronger and was better able to deal with her damaged lungs. It was a waiting game to slowly wean her down. In the mean time, we slowly weaned Kate’s pain meds. Seeing your year-and-a-half year old baby in withdrawal sucks. There was lots of holding, with vigorous rocking and videos.
About two weeks after the RVAD went in, she was ready to get it out. Things had gone well with the RVAD, especially since Kate was the first patient they had used it for. On Tuesday Dec 29th, Kate had her third open heart surgery in two-and-a-half weeks to remove the RVAD.
The RVAD removal surgery day was one of the worst days of my life, mainly due to hospital decision making errors. The poor decisions by the ICU team continued for the next two days, until the transplant team had to step in and put their foot down. However, the damage had been done. Kate’s road of recovery was going to be long and hard.
On January 1st, Kate got extubated from her RVAD removal surgery. It was a tense day, but we got to hold her again. Now, her recovery could begin in earnest.
The next month was a slow slog of two steps forward, one step back, with the backwards steps generally from poor decisions of the ICU team. Dave and I got increasingly frustrated and increasingly vocal about Kate’s care. But, she was making progress.
On Monday January 25th, Kate was officially downgraded off of ICU status. We told the transplant team, who was once again in charge, that we just wanted to get home. Kate was still on tons of meds, including iv meds, but we had done that before she came to the hospital. We could do it again post-transplant.
The transplant team rocks. On Friday January 29th, we were discharged from the hospital. It was a crazy whirlwind day, but we made it home. Everyone, including Kate, was elated.
We had two busy weeks at home. We had to do all the work the hospital did, plus be parents. But it was worth it to be out of the hospital. Plus, Kate was happy. She even started to walk independently!
On February 16th, we had to go back to the hospital. Kate’s broviac line, her long term iv line, broke. Since she was on 24-hour-a-day iv drugs, this meant a trip to the ER. They were unable to fix it, so we were admitted.
As always, the transplant team was amazing. Since we had started to wean the iv drugs, we decided to see what happened if she didn’t get them. After all, we were at the hospital, under observation. The worst thing that would happen is that they had to start an iv in the middle of the night.
The next day, the transplant team scrambled to find a surgeon that could replace the broviac, and squeezed Kate into surgery that day. That was Kate’s 11th time under anesthesia in her 22 months of life. Surgery went well and fast. Afterwards, Kate had an echo cardiogram to see how her heart was doing 22 hours after stopping the iv drugs. Everything looked good.
We were sent home 24 hours after arrival with a new broviac and no iv meds. This was amazing. Kate had been on continuous iv meds since she was three-and-a-half months old. The weaning process was going to take months. Instead, it took 24 hours.
Now, we just had to get rid of her continuous food line. We had a plan for that. One of our favorite therapists at the hospital had stopped by and talked us through it.
Kate gradually condensed her food from continuous feeds to only five times a day, like a normal toddler with three meals and two snacks. Yay! For most of the day, no lines! We all enjoyed Kate’s freedom. She had had lines for all but two months of her life.
Over the rest of 2021, Kate slowly recovered while we got busy with life. She started talking, not much, but it is better than nothing. She slowly weaned her medications from the 14 drugs with 41 doses per day that we came home with to her “maintenance” meds of 4 drugs, only 6 doses a day. Only one drug is prescription. Kate’s finally making progress on eating. We just stopped her pain meds that she has been on for two years. Her heart looks completely healthy and great. At her last clinic visit 11 months post transplant, Kate was playing and laughing, and her doctor commented that she seemed like just a normal kid.
Read our Journal for more details. If you want to receive an email every time we update the journal, sign up on our mailing list below or to the left to receive updates. We are pretty sporadic on when we write these, and then you won’t have to keep checking or wondering. It will just magically show up in your inbox.
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