It’s been a little over 2 months since our last update, just after we got out of the hospital. It’s been a fun whirl-whirl adventure in the world of baby! Today we are back in the hospital, but before we get to that, let’s catch up on life.
Since we left the hospital, we’ve been able to treat Kate as a normal kid with no restrictions. She’s shown she loves going for a run with mom or dad. Kate’s climbed a mountain, been swimming and hiked in the desert of Phoenix. Kate went on her first 5k race! We have been struggling with normal baby stuff like sleeping and eating. All things considered, it’s been a wild and fun ride!
Heart wise, we have been regularly checking in with the cardiology team at Children’s Hospital and they have been tracking her status. She’s had two echo-cardiograms since getting out. Both have shown similar things, even though for one of them she was extremely unhappy and screamed herself to a pulse of 200+ bpm for 20 minutes. Her echos have both shown that there is some concern with the mitral valve and pressures in the heart and lungs.
This brings us to today. We are back at Children’s Hospital for a heart catheterization to get more data on exactly what is happening and what next steps need to be taken. The original diagnosis of HLHS is still not being discussed, which is good. This latest issue is one that has always been on the table, it just was a lower priority than other issues. We don’t know what our next step will need to be for the mitral valve issue. It could be just monitoring or drugs. There could be surgery to repair the valve or something as extreme as a valve replacement. We’ll find out in the near future.
It’s a bit surreal being back at the hospital after being in the hospital for over a month, then being gone for a couple months. There are lots of familiar faces in the staff. Many still remember us. It’s sad having to come back to the reality of having a heart baby but I’m still happy she’s as happy and healthy as she is.
Thanks a ton to everyone who has been so supportive. Audrey and I aren’t the most vocal or outgoing people so if we haven’t reached out or replied, please don’t think it’s personal. We appreciate everyone and all the support. Please don’t stop!
That’s about it for today. If you want to catch up on what we’ve been up to, check out the album of all our adventures since birth below.
Awh…. so precious! Nice to see you guys are enjoying life & little Kate! Little ones grow up so fast. First thing you’ll see is that she’ll have teeth! 🙂
Great to see that you three have been so active!! You & the cardiology group are on top of ongoing issues so that is the best for Kate.
You know that if you interviewed most 40-50 year old Americans, many would never have done as much or traveled as much as Kate. Wish you the best. John