Renaming the "Clot"

Today was a big day for Judah. He just went to bed without taking coumadin! We had an appointment with Dr. Park this morning and we got to have another echo. The "clot" still hasn't changed so here is the list of things it could possibly be:

1. A clot - by this time it would have been covered with endothelium and therefore stabilized enough so that it is very unlikely that it could break off or grow

2. Scar tissue from the surgery

3. Part of Judah's actual anatomy that wasn't noticed before

4. Surgicel - the blood clotting material that the surgeon packed around Judah's heart after the surgery when he was having excessive bleeding problems (although his body should have dissolved this by now if it was there).

We will have another echo in a month to be sure that there is still no change. I'm trying to think of a good term to use for the "clot" as we've been calling it...right now I'm going with the "undefined blob". If you have any ideas on potential names for it please comment below :)

I am so thankful to be done with coumadin :) Lately Judah has really been sucking on his hands and scratching his face and because of his bleeding issues normal little scratches look like huge gashes all over his face. I was embarrassed to take him out because people worried about his face. I promise I cut his nails all the time! Also, once his INR goes down, the risk of bleeding from tummy upset goes way down (in case I make a mistake and accidentally eat something with dairy or soy in it). And I know I'll worry just a little less when Nehemiah is trying to squeeze his brother with a big hug :)

Besides the undefined blob, Judah is doing amazingly well! He was just shy of 15 pounds today and is in the 96th percentile for height and the 68th percentile for weight. The teeny tiny leak that was in his neoaortic valve is gone. (He still has the tiny leak in his neopulmonary valve but that one isn't a big deal.) They were able to get a great view of his coronary arteries and the branch of his pulmonary arteries and it all looks great! His heart function is wonderful and with his weight gain Dr. Park said he really is just like any other baby at this point. He even gave us clearance to go to Minnesota this summer and Hawaii in the fall!

Today was also special because I was able to meet a new friend who was born with transposition named Joel, and his mommy, Kari. Joel has been in the PICU for quite a while now, and has had some of the same complications that Judah had at first, and a few more. For those of you who have been praying for Judah, please pray for Joel now. They have had so many ups and downs and they don't know when they'll be going home. When I went up to meet Kari and Joel I was able to see Sherrie and some of the other nurses that we had when we were in there. It felt like I was able to see family that I hadn't seen in a long time.

In other Judah news, his GI bleeding has pretty much stopped since I removed soy from my diet. I've learned that I really like hemp milk and coconut milk ice cream, and although I have to be really careful about how I eat, I am certainly not starving :) We get to see the GI doctor next Tuesday to check on his tummy issues. His stools still don't look great, but at least there isn't visible blood in them any more! I've actually been thinking about how the coumadin probably helped us identify Judah's food allergies in the first place...if he hadn't had the bleeding, who knows if I would have noticed anything wrong and investigated his allergy issues. So in a way, I'm thankful for the coumadin.

One of Judah's favorite things to do these days is bounce in a standing position while I hold him. We took him to the Mended Little Hearts meeting tonight and he bounced away as I introduced him to our friends who have been hearing about him for so long. He also made it to our family's Easter gathering and enjoyed watching his brother gather eggs and chase my cousin's pug, Chloe, around the house. It feels so good to be doing the "normal" things in life like shopping as a family and chasing Nehemiah around the block on his bike (Judah has been spending a lot of time in the front pack). We've been seeing more family and friends and we've started going to the gathering at our church again too. It will be a while before I'm ready to stick Judah in a shopping cart or put him in the nursery at church, but at least we're out and about!

I'll post again in a month if we have any new news! Thanks again for your prayers and words of encouragement.

With love,

Kirsten

P.S. Below is the product of me trying to write this blog too late at night. I was going to delete it all when I came back to edit this post, but it is just so typical for this time in my life and I think it should be recorded :) Apparently I fell asleep with my finger on the "x"

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