Hearts…

By Joanna Billigmeier | April 11, 2016 |

I am so far behind in blog world! I will try to catch us all up…
A couple weeks ago we had little M’s heart clinic. She has been going on a yearly basis to have a checkup and to keep track of how things are going in order to determine when her next heart surgery will be.
Little M struggles with shortness of breath, and chest pain when her heart is working very hard, among other things, and it seemed that lately those struggles were increasing. So, we thought that when we went we would hear one of three things…come back next year, come back in six months, or it’s time for surgery.

One of the things that concerned little M, as she is now more interested in sports, and wants to take a gymnastics class, is if surgery would help her shortness of breath, and her chest hurting when her heart beats hard. This was a concern of ours, as well, and we had thought that if those things can be helped it might be worthwhile to push her next heart surgery up.

Little M’s heart is enlarged on the right side. This is because she was much older when she had her first surgery, and her heart had to work harder to sustain her. Her heart still works hard…when little M is resting, or still, her heart is working as if she were running. When you run, and your heart rate goes up, and your heart beats a little harder? That is little M’s heart all the time. But when she runs? It works even HARDER!

Little M needs a pulmonary valve replacement…but she doesn’t need it now! This is good news in that she can wait until she hits puberty, making it very likely that she will only ever need ONE more open heart surgery. We were thrilled to hear this, but we were very disappointed to find out that even when she does have this surgery her other issues are here to stay. Her heart has worked so hard, making her lungs work hard, and the way they are now is most likely the way they will stay.

It was very hard for my little M to hear this news, and it was hard for me to watch her hear this news.
Her very sweet cardiologist who has loved her since the first day she walked into his office over five years ago gave her a hug, and did his best to reassure her. He told her that she could do anything she wanted to do…she can do gymnastics, dance, run, even run marathons! She will just need to work much harder. Our girl has always had to work harder, and she really can do anything she wants to do!

Tiny P has had her share of heart clinics lately, too. She had what was supposed to be her pre-op for her heart catheterization last Thursday, but we decided, after a very long day with many tests, that is was safest for tiny P if we rescheduled. Tiny P has been battling a cold since February, with a cough and all the fun congestion… and lately she has started having random fevers in the mornings. With all of that, we decided to hold off.

Our tiny P has also been very anemic, even though she is on some very large doses of iron, and we upped those iron doses, but she will likely need to have some blood transfusions soon.
We have her next heart clinic tomorrow, and we will see what they say about performing her heart cath this week.

These girls… I wouldn’t trade them and the joy of being their mommy for the word. But they do stress a momma out!