No news this time, just an update.
Sorry it’s been quite a while since our last update. Luckily we have been mostly in normal baby world since then. Our day to day time is spent dealing mostly with normal baby stuff like eating, sleeping and playing. Kate’s just a baby with a backpack! We’re still on the transplant list and no, we don’t know where she’s at on the list or when to expect a heart. There is an update on that below. The doctors have had some calls for her but she is lower down on the list.
Kate is just shy of 9 months old now! It’s been an interesting time. The travel restriction is tough. We still have to stay within a 4-6 hour radius of Children’s Hospital in case a heart becomes available. This fall Audrey’s brother got married in Boston and Dave stayed back in Minneapolis with Kate so Audrey could attend. It was tough on all of us. Dave and Kate had to miss the wedding and Audrey attended without the family. With family living far away, she still hasn’t been able to show off Kate to the majority of her family.
Overall it was a fun summer and fall. We ran some races, hiked local parks, checked out a few breweries and made it to Duluth a couple of times.
The holidays were tough this year. Kate came down with a cold the Sunday before Christmas and didn’t really kick it until New Year’s Eve. Kate is good at coming up with excuses not to eat and unfortunately her cold was a great excuse. We were able to fend off dehydration but there was lots of stress and concern over calories and fluid intake. Of course Audrey and Dave got it too. Ugg.
On New Years Eve Day we had a check-in with the transplant team that caused us to re-think what lies ahead. We were always under the impression that we would be going about our day, get a call and have to go in for a transplant. Originally we were told to expect “weeks to months” on the list before getting a heart. At this past week’s meeting we were talking and learned that we really shouldn’t expect to get a heart until Kate’s health declines and we are back in the hospital. The transplant list works not only on time on the list but on a severity status. Because she’s at home, Kate’s status is lower than someone who is in the hospital. Anyone on the higher status automatically gets in front of her for a heart. It makes sense and is the way it needs to be, but it was kind of a gut-punch knowing that her health has to decline, then we need to be stuck in the hospital for a long time before we can expect a heart. Yes, we are accruing time on the list so when we do go in, she will be higher up but there’s not that many hearts that come available.
Even with the above, the transplant team has had more calls for a heart. They start getting notified when you are quite a ways down. Recently she was number 19 on the list for a heart. There were 55 people on the list total and the heart went to number 7. It’s good to hear that there are calls. Hopefully we’ll get lucky and her number will come up without a decline. Fingers crossed.
How can you help? Lately we are struggling just getting out and doing social stuff. Kate loves getting out and checking out the world! We love showing it to her! A big way to help is to reach out and get us out.
Here’s a few pictures since the last post. For more, check out the gallery link at the top.
