Dylan made it through his Glenn like a champ! Of course we had a few setbacks, both of his lungs collapsed the night of his surgery and that was very scary. It took a good few days to see any improvement with his lungs. We also had a GI setback .... even after me telling them that Dylan was severely allergic to milk and that he would bleed if they gave it to him, they decided to give it to him anyway... and what do you know? the next day.... blood. Idiots! I wanna say we were in the hospital for about 8 days post glenn and then we were home free!! Yay!! Things have been great at home the last couple of months... only dealing with the normal baby stuff like teething and stuff. We still go to PT and OT every week to work on Dylan's development and his feeds. Developmentally they say he's a few months behind, he's making progress... but its slow progress... but that's Ok. Feeding wise he's doing great with his baby food, its drinking his formula that we're having problems with. We've been trying to work on getting him to drink out of a cup because he would not have ANYTHING to do with a bottle.... but within the last 3 weeks he started having really bad reflux and choking and gagging so he stopped eating... he didnt want to even eat his baby food :-( We increased his reflux medication and that seems to have helped a little. He's back to eating..... AND for some reason, a few days ago, he decided he wanted to take the BOTTLE!! Just out of the blue, we gave it to him because he wasn't even drinking out of his cup, and he took the bottle.... he will only drink 15-20ml's at a time.... but hes excited to have the bottle and he even holds it sometimes.... so its progress!!! Hopefully he'll continue to take more and more and we can get him off of his G-tube soon!!!
In my last post, I posted that dylan was just learning how to sit up..... well he's a champ now! I can never get him to lay on his back anymore.... he always has to be UP ... he even stands... he LOVES to stand.... but his PT told me not to encourage that too much because we need him to crawl before he walks.... which his is NOWHERE near crawling :-( He just hates tummy time SO much... i don't know if its just him being stubborn.... or if his G-tube bothers him. I think that it does. I think that he might have some sores or irritation on the inside of his tummy where his G-tube is because its very sensitive.... if I even just bump it a little he will cry.... and he will cry if i even open it up to connect his tube sometimes. Poor little guy :-(
Last week we had a consultation with a Urologist to talk about getting Dylan circumcised .... he was cleared by his Cardiologist to have it done last month. Well that was until we just found out from his Cardiologist that based on Dylan's last Heart Echo, it looks like he has some narrowing where they did his last surgery. They need to take him back into the Cath Lab to try and balloon or place a shunt to keep it open. The only good thing about this, is that his Gastro docs will be able to do an Endoscopy at the same time while he's already out, and hopefully get some answers to some of his GI issues. So that's where we are at right now ..... its back to the Cath Lab.... probably early to mid January, after the Holidays. It SUCKS! I am totally bummed. I was enjoying not having any upcoming surgeries or procedures to stress about for a couple of years..... and now i'm a wreck! Dylan will do fine, he's a fighter, and he always amazes me...... It's just hard sometimes, and it sucks that it never gets easier.
I'm really mad at myself that I didn't blog during and after Dylan's last surgery. I really wanted this blog to be something he could look back on and read about his journey. But I guess there is nothing I can do about that now, except for to try and keep up with this blog from now on. I think I'm not only going to use this blog to update people, but to also blog about ME and my feelings and MY journey as a Heart Mom. Being a Stay at home mommy and taking care of Dylan 24/7, I don't have a time or place to break down.... I have to be strong and just do what has to be done all day, every day. I need a place to where I can let my guard down and not feel bad about it. This will be that place.
I will leave you with a few recent pictures of our little peanut, and hopefully I'll make more time to visit and update this blog more often. Thank you to the ones who have continued to support me and my family. It means the world to us, and we wouldn't be able to get through this without the help and support from others! <3
Omgosh what a sweetie. I'm from MBabies page and wanted to read more. Such a doll. Gtube will be done in no time
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