I guess I'll start with news from Andrew's latest cardiology appointment. I didn't post about it earlier, because it was about 4 days before Kerigan was born, and I didn't want to post a bummer update right before such an exciting one. We've been pretty focused on our little girl since then, but this week brings just one more event in this heart journey, so I guess the time has come for the "bummer" update. I promise I'll post pictures of the kids at the end to make up for it!
Andrew had a follow up appointment from his surgery in March. It was the first time he's had an echo since his surgery, so we were a little nervous going into it. If you recall from this update, we were told going into his surgery that the pulmonary arteries might not stay open, thus requiring more stents to be placed. Of course, we were hopeful that the pressure would stay down, and he would not need more stents. But this was not to be.
The echo showed that the pressure in his right ventricle is higher than it was after his surgery. It is still not as high as prior to the surgery, but higher is higher. It is looking like he will be needing a stent in his left PA once again. This was somewhat of a blow to us, but of course, we have learned that you always have to be prepared for this news. We learned a long time ago that this journey is never going to be over, and we will continually be fighting CHD's. It sucks. But that's just the way it is.
Our cardiologist consulted with the cath doctor in Iowa City, and they decided that Andrew should have a lung profusion scan, to make sure that a stent is actually necessary at this time. The LPS will show the percentage of blood going to each lung. It should be about 50/50, but in Andrew's case, it has never been close to equal. Depending on these results, we will then proceed with the cath.
I have mixed emotions about all of this. Of course, on top of pregnancy hormones, I have been somewhat emotional about everything (even small things). I understand that this is our life, and we just have to deal with each day as it comes. But to be quite honest, it is getting so old. I am tired of sending my son to the cath lab. One of these days I'm going to go back and count just how many caths he's had in his little life. Too many to remember. And it just isn't fair. Enough is enough. I know it could always be worse, and I accept that. I know that Andrew was chosen for our family because we have the ability to love him beyond words, and do everything in our power to fight for him. We will always be honored to be his parents, and so proud of him we could burst.
But it still sucks.
His lung profusion scan is on Wednesday morning. We are going to try to go into it without sedation. I am so hopeful that he is big enough to understand that he has to lay very still, and not move. I think it is expecting an awful lot of a four and a half year old, but we are going to try. It makes me sad to have to tell him that the consequence for not laying still is a "shot" (an IV), which will only scare him more. And also most likely an upset tummy and feeling pretty yucky when he wakes up. We are hoping that a special trip to Adventureland and a viewing of the "Smurfs" on the "big movie" will help up the anty. We are praying diligently that he can get through the test without sedation. Please join us. We will keep you posted on the findings, and the plan. Thank you for supporting us with prayers as you always do.
And now the fun part...and pictures as promised!
We have been having fun getting out all of Andrew's old toys for Kerigan, like the tummy time mat and play gym. She is getting really good at controlling her head, and she really seems to like tummy time, unlike her brother! Ha!
I had my camera on the wrong setting, so these came out blurry, but they are too sweet not to post. I just love how Andrew is playing with her and showing her the turtle, and she is watching so intently.
We can't believe how strong she is already. She is growing so fast, it is amazing.
Getting a little tired of tummy time now, but big brother is helping!
We sometimes have to remind Andrew to be gentle! Ha! As time goes on, he is getting more used to Kerigan being around and I think he expects her to do the things he can do, and he forgets she is very fragile. He is still really sweet with her, but just needs a few reminders (and a few time-outs!) Ha!
Thanks again for your prayers for Andrew on Wednesday! We'll keep you updated...