Sunday, August 16, 2015

This time, Eden wore the hospital bracelet

We're home from a weekend in DFW and we're slowly starting to recover. This may be long, but there's updates at the end, so bear with me.

The kids and I left Thursday afternoon after going to see Shaun the Sheep Movie in the morning. We got to Arlington around 5 and hung out at the in-laws for a bit so I could avoid as much traffic as possible. The boys immediately started playing with the trains Papa had recently acquired and didn't really stop for the next 48 hours. Around 6.30, Eden and I headed on to Dallas to the hotel. I wasn't hungry when we left, but it was about an hour drive and I knew I'd want something later on. I should have stopped and grabbed something on the way, but I wanted to get checked in and settled first. There was a diner across the street, but the idea of strapping the baby on and going to a restaurant alone was exhausting, so I took advantage of the fact that the hotel has room service. I LOVE room service, so that was exciting for me. We watched Sixteen Candles and The Breakfast Club while I ate a burger and took a nice long shower (alone!) and then went to bed at a decent time.

Friday morning, room service again came through and I had a waffle while watching the news and Eden eyed me from her crib. She didn't sleep well in it the night before, so ended up in the bed with me. It never ceases to amaze me how much space a tiny baby can take up. It was a king sized bed and I think she took the middle third. She wasn't allowed to have anything to eat after about 5am, so she was hungry when we left at 8 (she had her last feeding at 9pm the night before).

At the hospital, I found the right parking area and got right to the cardiology clinic. We checked in and did the weight and length measuring (15#15 and 26") and then waited for a bit before they moved us to the room where they did the echo. At 9.30 they gave her 2/3 of the max dose of the sedative...and she spit out probably half of it. Not spit up, spit out. She didn't like it. Since there's no way of knowing exactly how much she got, we had to wait and see if she'd go to sleep on her own. Twenty minutes later she was still wide awake so they had to order the other 1/3 of the dosage and give her that...and she threw that up. Finally, we pulled out the bottles of milk that I'd pumped the night before and that morning and of the 6.5 ounces total, she drank 4.5. She finally fell asleep around 10.45. Baby girl was just super hungry.

Before all that, I did warn them that I have to have more sedative or pain reliever type medications than normal. Granted, the only time I've had anything like that was for oral surgery, dental work, and post delivery, but nearly every single time, the doctors have had to give me more than what was recommended for a person my size. And then it wears off quickly. I mentioned it wondering if that might be something that Eden has inherited. Since she started to come out from under the sedation after about 30 minutes, I'd say yes. The doctor agreed with me.

After she woke up, we were moved to another room to wait for the doctor to look at the scans and come talk to me about what was there. We waited for a little while, during which time I gave Eden the last little bit of breast milk.

The whole purpose of the sedated echo was to get a better look at her VSD, the hole between the bottom two chambers of her heart. Those chambers are switched, meaning the weaker right ventricle is in the stronger left ventricle's place and they're doing each other's jobs. The hole is letting the blood mix between them a bit, which somehow helps the right ventricle do the harder work of the left ventricle (the PDA helps with that, too) and the pulmonary stenosis on the pulmonary artery is helping the left ventricle stay strong, in spite of it doing an easier job.

Because of the pulmonary stenosis, the doctors have decided that doing the double switch, where they switch the pulmonary artery and the aorta to the correct ventricles, is not the best option. What they're considering instead is putting a conduit in place from the right ventricle to the pulmonary artery and using the VSD as a conduit from the left ventricle to the aorta, forming a sort of X to connect everything together the right way.

So Friday, they wanted to look at the VSD to see if that was possible.

The VSD is not like a two dimensional hole. It's three dimensional and that makes things tricky. The hole is narrower at the top, near the aorta, than at the bottom, into the left ventricle. They're not sure if it's TOO narrow to use for the conduit purposes. If it is, they could widen it during surgery, but if it's too wide, or they widen it too much, that could lead to heart block. Heart block is basically where the heart beats too slowly. The electrical signals between the upper and lower chambers are blocked, so the heart doesn't beat like it should. Some people live with it for years, some people die quickly. Sometimes heart block necessitates a pacemaker, which increases the need for a heart transplant.

The main thing the doctor said, though, is that her gut instinct is to not touch Eden's heart. She's feeling like the risks of heart block from surgery are about the same as if we don't do anything (my words, not hers, but my understanding and explanation). Eden is doing so well these days, no issues, great weight gain, no illnesses, no negative reactions to anything, that she feels like we should just do nothing but watch her.

She is going to send the scans and Eden's chart to doctors in New York where she did her fellowship and to a doctor at Stanford who has a lot of experience with hearts with this anatomy and she'll share it with the doctors there at Children's to get an overall consensus on what the best idea is for Eden. They'll weigh the pros and cons of surgery vs watching and we'll go from there. She said she'd get back to me within a week or so, but I'm not going to stress too much until September. I want them to have enough time to really form a solid decision.

When I told Austin, he immediately thought of a man from work he knew of who died at 50 because of heart block and when I told Mom, she immediately asked about the right ventricle wearing out over time. I didn't really have answers for them (this is why I like someone else being with me: I don't always think of the questions) but I'm cautiously optimistic about no surgery for a while, maybe even years. I'm assuming the right ventricle being weaker would mean they'd have to do surgery at some point, but that's something I'll ask about at our next appointment in September...or I may email the doctor about it this evening. lol

They always make a point of telling us that nothing is going to happen suddenly. Eden is not going to be ok one day and then horribly ill the next from her heart. Her heart will gradually wind down, like batteries in a toy. There are always instances of it being sudden (Dad's death was definitely sudden) but they're not the norm. Our constant checking of her pulse ox every day, her monthly exams with the cardiologist, our vigilance about people being sick around her are all good things to helping her stay strong and healthy. I told the doctor on Friday that if we needed to start coming to Dallas every six months or so for exams like this one, we could definitely do that. I hope she understood that if she wants us to go be seen by another cardiologist somewhere, even Stamford or New York, we'll absolutely do it.

So, yes, there are still a lot of questions, maybe more now than before, but there's also a chance that she'll come through this without needing surgery. I'd love that, but I'm also realistic to know that it's unlikely she'll NEVER need surgery. Not with her little swiss cheese heart.

After leaving the hospital, I got several texts, pms, and phone calls asking for an update. We had lunch with a bunch of Arlington people on Saturday afternoon and dinner with friends Saturday night and they all got the news. So I know for some of you, this is a repeat, but for others it's new information.

The boys enjoyed their time at BB and Papa's house, and when we left to go to dinner, they were confident we'd be returning for the night. When we left our friends' house, they complained they didn't get to play more with their new friends and then that we didn't go to BB and Papa's house. Elijah said he wasn't going home, he was going to BB and Papa's house. I was half tempted to drop him off at a church and call BB and Papa to come get him.

All three were asleep when we got home, so Austin unloaded everything while I was sick (maybe nerves from the hospital exam finally caught up with me?) and then we all went to bed pretty happily. It's always nice to be back in your own comfortable bed. Today has been some slow unpacking and putting away and laundry and resting. Tomorrow, we get back to the usual routine for a while. And this week....Daddy's home!

Eden's Medical Fund

Hanging out at the hotel. I really think her ptosis is getting better. 

I walked through the hotel with my hair like this. Yikes. 

Being cute and coy

Happy girl

Playing with her toys in her little hotel crib. It wasn't big enough. 

Asleep on the hotel bed. 

Where's my breakfast, Mom?

Playing with her toys while we waited.

The wall was a dry erase board with dot-to-dot fish. Asher would have loved it.

Now the hospital bracelet has her interest.

She got cold being mostly naked so I wrapped a blanket around her.

No nap is as good as a Daddy Nap

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