First, I should say that Monday night Logan started to feel better. It was the first night that we saw symptoms of the flu starting to reside. Tues. morning he was back to his smiley self. This was a HUGE relief to me because I was starting to wonder if he just wasn’t going to be himself again.
Tuesday after we went to Dr. Patel office to for a post op. check up and echo.
It was the best appointment I think he has ever had. Dr. Patel said his hemodynamics (blood flow) look GREAT! He said the surgery made a huge difference and his Pulmonary arteries look good his blood flow thru the Glenn looks even better, his ventricular function looks great, his valve is greatly improved. He said he looks fantastic. I felt a huge sigh of relief…….for about 10 seconds….. and then I wanted to know why scar tissue won’t grow at the site that Dr. Del Nido just did surgery on. The response was what I expected which is that scare tissue can grow there and we could be in the exact same spot all over again. Although, this isn’t true the situation would be worse because the scare tissue would now be even closer to the pulmonary veins which would be the situation that we have been trying to avoid since Logan was 18 weeks in utero. Dr. Patel said that he is optimistic that this won’t be the case but we need to keep our fingers crossed.
Logan weighed in at 5.5 Kilo or 12.2 pounds. Pretty tiny for a 9 month old. It was so funny because this time when we were in Boston everyone kept commenting on how big he got. I was couldn’t believe people were saying that. When we were there at 4.5 months he was 5 k and now he is 5.5 k. Not much difference if you ask me although he is longer. And when you think about it 1 pound of weight gain in 4 months is pretty sad. Dr. Patel said that he really thinks that Logan will start catching up now. He should have the energy to start eating a bit more (although heterotaxy kids tend to have smaller stomachs than normal so he may never have normal) and once he gets more calories he may have energy to start doing baby things like holding his head up, sitting up, ect…
Yes, I did say that Logan at just 9 months can’t even hold his head up. I feel much relief to see him holding his head up.
I have to say that this last open heart surgery really shook me up. It has created an uneasiness in me that is really hard to shake. Its one thing when I know its coming and I can prepare and emotionally for all the possibilities but having it sprung on me out of the blue was just devastating. And maybe now I am just starting to process what all really happened. Now I feel like I have to hold on to that rug really tight because I can’t handle someone pulling out from under me again right now.
I am also very much looking forward to the spring and summer when I can relax a little about germs and Logan getting sick.
Heterotaxy Syndrome 
Logan will definitely start catching up now. I don’t think you will ever feel comfortable with more germs. Hopefully the weather will break and we can get all the kids out of the house and to the parks around here…they will have a great time together.
Kristin, you continue to be a vision of strength and knowledge. Your continued knowledge and motherly instinct is truly impressive. Although this is an ongoing battle, your perseverence seems to be what gets you through these ups and downs. You’re in my thoughts.
Thank you Therese!
We are so happy that you had a great echo and results.I think all the heart moms are looking forward to the warmer weather so we can relax about out LOs getting sick.You really have been through so much.You are a very strong mommy.Keep up the good work.
Thank you so much! Now if only this warmer weather would just hurry up a bit.
I am so glad that his blood flow has improved and I really hope that helps him eat and gain more weight. We have struggled with Lauren’s weight gain a lot, too. She’s 28 months and only weighs 24 lbs. She’s still wearing 18 month clothes and some of those fall off, too. It’s very hard to get her to eat sometimes. However, we are blessed that she no longer has an ng tube and eats at all. I am so sorry this surgery was sprung on you. I totally understand how upsetting that would be. It’s hard enough when we plan for one for months. I think that’s one of the books I’ve been thinking of buying! I really want the pocket guide to keep in my purse. How funny is that!?
Thanks. Yeah the whole eating and gaining weight thing is just awful. I am just thankful that Logan recently grew out of his newborn clothes!