I spent my birthday afternoon with Oliver and all 3 girls. We were at cardiology appointments, but I'll take it. We knew it'd be a long afternoon, with expected office visits and probable EKGs and echos. And it was a long afternoon. The patient rooms at Hillcrest are small, and our family of 5 squeezes in there. It is a challenge keeping the 3 girls contained and distracted. Evelyn is at the age where she is walking around and likes to explore. She was pretty good the whole appointment. Sofia and Adelaide are good for awhile and then they get restless I hate to just put them in front of the ipad (plus, that doesn't always work when there is 1 ipad and 2 girls who sometimes have a hard time sharing).
It's always nice to see Dr. Edwards. He has been Sofia's cardiologist since she was born and it's comforting to know that he knows her and her history. He doesn't have to look up which pulmonary artery was stented, what medication she's on, or where her pulse ox typically is. And I feel like he genuinely cares for our family. We communicate by e-mail in between office visits and it's nice having a good relationship. We found out our long time nurse Stacy at Hillcrest is retiring in July and I was kind of reminded that when Dr. Edwards retires it will be hard on us. I don't do well with big changes and especially ones that involve my kids' health. Luckily, I don't think that is anytime soon so we'll enjoy our situation as it is now. He is always very thorough with us - heck, we were there pretty much from 1 PM to 4 so definitely take up an afternoon. Exams first with Dr. Edwards, then when Evelyn wanted nothing to do with an echo, Sofia jumped in and did hers like a pro, then we tried Evelyn's again and she was only slightly better. Even being laid on my lap, she did not want to cooperate. Very hard age for doing echos, but he felt a sedated echo was not necessary. Then we met up again with Dr. Edwards and had discussions about their heart health, then vacations, our house, and Audis.
Sofia is doing great- I think her office visit report even said she is doing "extremely well clinically." Those are fantastic words to hear. She couldn't have had a better report. By all measures, she continues to amaze us and I think her doctors. The words that are harder to hear are that the future of Fontans is uncertain. Of course we know this already and it's not surprising to hear. When I asked Oliver what he thought about the appointment he said it's a reality check. Indeed it is. We tell ourselves not to get wrapped up in our everyday lives by things years in the future and it's hard to do that, but it's somewhat possible. We probably couldn't function if we were so gripped by fear about the future. So going into appointments and hearing things like that are a reminder that we don't know what is to come. We do know things to keep our eyes on that can affect Fontan patients - arrythmias, PLE, heart failure and we try to stay ahead of these things as much as you can. What we are pretty sure of at this point is that a cath will be in her future - her body will outgrow the stent in her pulmonary artery and they'll need to address that at some point. We will wait until she has symptoms of needing that done. The EKG showed no changes from her last appointment and the she's in sinus rhythm, but we also talked about doing a holter monitor at some point to get a better study because Fontan patients do have possibility of having arrythmias. We've always had a proactive approach to her health and being on top of everything we possibly can be, but I've seen things sneak up on too many kids lately and it is scary. We will continue Coumadin because of her stent placement. She is not really limited at this point in what she can do. Dr. Edwards gave us an ok to get her ears pierced if we/she want to. I've heard mixed things from other parents about it. The risk of infection is low and he said the ears are generally clean, but he said any other piercings are a different story. Fine by us. She has a neurology appointment this summer (she's part of the neurocardiac clinic even though she has always been on track developmentally) and the gastroenterologist due to her gallstone.
Evelyn's very limited echo showed pretty much no change from the last appointment. Her pulmonary valve stenosis is mild. 30-35 peak mmHg. It was about 28 last time, but she was screaming during the echo today so that probably attributed to the slightly higher numbers. I have a read a few studies that seem to conclude that if the stenosis is mild at about a year of age it is likely it will not progress. So the fact that hers is mild at one year is great news. In fact, I have read that in many cases over time it will decrease in a large number of mild cases. Prayers are continued that this happens.
Their next visits will be in 6 months.
Until then, life as normal again. It's not that I don't think about her heart and health in between appointments, because I constantly do, but I don't know why even after a great appointment I feel down? Is it just because it's a reality check? That we go on for life for 6 months in between and she has great appointments, and then it makes it even harder to believe that the future is uncertain? I don't know. I'm out of the funk I was in for a day after the appointment. I suppose this is normal. There will never be a day we go into an appointment and hear that she is cured and never has to come back, so this is the next best! Sofia the rockstar.
We moved into the end of the year now with Sofia finishing up her Kindergarten year. She has had a great year and has really become a good reader and writer. I love seeing her artwork and have a hoarding problem when it comes to the pieces they both make in school. Adelaide has another preschool year next year and she is full on reading! She is 4 1/2 and she is just a whirlwind of sweet and sass. She wants to be a painter when she grows up. She is meticulous when she colors and makes pictures. Evelyn is being more "independent." She lets you know when she wants something (oh that screech) and she loves to just toddle around. She's a little peanut. We've definitely arrived at the age where I'll be chasing her around just to keep up with her. We had a great visit in Columbus last weekend visiting Kate. The girls loved hanging out with their aunt and we had unbelievable weather. Great visit!
Love Indian food
A girl and her Godmother
Watching t.v. and getting her echo
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