Friday, February 20, 2015

Eden Update

I haven't posted about Eden for several days because there's not been anything to report, which is good. She's eating well, growing well, doing everything as she should. 

At her two week check up, I asked about her droopy left eyelid. We all figured it was somehow related to her birth since after she was born she got some blood in her eye. It turns out it's very likely she has ptosis, a congenital condition where the muscles in the eyelid aren't as strong and the eyelid droops. It can affect how her vision develops and unfortunately there's not a way to fix it non-surgically. But from what we found online, typically children live with it until they're about 3 or 4. Plus, no way would doctors want to fix her eyelid before her heart. We at first had an appointment to see an ophthalmologist but then decided to put it off a couple of months just to give me a break and to be able to see the pediatric specialist in town. 

A couple days later, she had her first appointment with the Children's cardiologist but due to weather somewhere, his flight out of DFW was cancelled so he didn't make it. They still took her vitals and checked her out before sending us home. She was great, everything well within normal ranges. She had also regained her birth weight. It was just frustrating to go all the way to Regional, wait for 30 minutes and then find out that the doctor wasn't there. 

Luckily, he was there yesterday. We again checked her vitals and everything was in the normal range, then we went for another echo. I'm not sure for a fact, but I suspect they'll probably do an echo every time we see Dr. Kane. This one wasn't nearly as long as the others, since they know what's there now and are just checking to make sure nothing new has developed. She was fussy and crying at first but then I climbed up on the table and held her and she calmed down and watched the tech do his thing. 

Dr. Kane seemed to think she was doing well enough that we don't actually need to see him every time he visits, just every other time. That means only one doctor visit a month instead of two, which is nice. Obviously, if we feel like she needs to be seen or we have questions or something for him, we can. Our first go-to will be the pediatrician and then him. He took the time to reexplain her conditions to us, which was nice. I'd apparently missed it that there's two holes in her heart: the VSD between the ventricles and an ASD between the atria (upper chambers). Austin didn't remember it either but it is on our paperwork from Dallas, so who knows. 

He explained that if she starts to get worse, it most likely won't be a sudden thing but a more gradual decline, so we'll notice it and he'll be able to spot it in his monthly checks. If she does get sick with something that warrants hospitalization, we'll go to Dallas for that, not here. So fingers crossed she doesn't have to be hospitalized. Neither of the boys were before 1 so I'm hopeful she'll follow in their footsteps. 

Around six months old, we will go to Dallas for an overnight stay for them to run a catheter into her heart to essentially map it. They need to know what it looks like with more clarity than an echo will give them. They'll use some kind of dye and map it out and then schedule her surgery. So we're looking at a trip back to the metroplex sometime around August or September and her surgery sometime (probably) shortly after that. 

We asked about waiting until she's 3 or 4 to do her surgery just to give her time to grow and he said there's really no reason to do that. Her heart won't get that much bigger between 1 and 3 and it'll weaken over time so they may as well go ahead and do it as soon as she's big enough. However, the main surgeon may decide otherwise and wait until she's 18 months. There's really no telling until we're there. 

As for the surgery, there's actually at least three different types they could do. The more complicated the surgery, the more likely it is to be successful for a longer time but it'll also have more risks. There's two kinds of double switch, one of which involves putting in a temporary valve type thing to bypass the pulmonary stenosis. That would need to be replaced later in life because it doesn't grow with her. The other type of double switch would involve a later operation using a catheter to widen the stenosis as it is now. Another option for surgery is to just close the holes and to kind of see how the arteries do. It would increase the possibilities that she'd need a heart transplant later in life while the double switch would not. All that said and done, there's a possibility that she'll need a pacemaker at some point in her life. 

We asked about the odds/possibility of any future children having some kind of heart issues (not that we're planning more, but hey, I wasn't planned either). He said that the odds of anyone having a baby with a heart issue are less than 1% but that a second child with heart issues the odds increase a bit, maybe to as much as 2%. It's still a very small chance, but greater than it was before. Her odds of having a child with a heart defect are also slightly elevated but not huge. 

We asked about traveling and going places in town and he said that we really just need to use our best judgement. Go to church but don't leave her in the nursery or pass her around. Go to MOPS but same rules. Probably don't go to the grocery store or shopping or out to eat with her. Traveling is ok, but just be aware of what's going on with her and around us. He pointed out that she's not as fragile as we were thinking, she's a fairly normal baby with just a special heart. 

I came away from that feeling pretty good about things. She's good, we're all good, we can return to a somewhat normal state of life. 

BCBS mailed a letter to the pediatrician and us stating that they're not going to pay for her antibody shots to protect her from RSV. We think they maybe didn't really look at her file because it says she's not covered because she wasn't born before 29 weeks and doesn't have congenital heart disease. Pretty sure holes in her heart and switched ventricles count as CHD. We've got a great ped in that when I called her office Monday to see if I needed to do anything about it I was told they'd already sent in an appeal. She's due for her next shot after March 1 and they've got some in stock so we'll be ok until April at the very least, and that would be the last month she'd need it for now. We think she'll probably have to have a couple at least next RSV season but we'll cross that bridge when we come to it. 

We also got our first bill from the hospital stay. Yikes. Luckily we talked to the insurance company and we've hit both our deductible and our out of pocket, so from now on, everything for her that's in network is free to us. Yay! We at first were thinking we'd have to pay 20% or so of everything after hitting the out of pocket and I was panicking a little since we just don't have that kind of money. But I'll gladly pay the $3000 that's our out of pocket every year to take care of her. 

All said and done, I personally feel a lot better about what's going on with our family. Eden is very much like a regular newborn, the only way her heart affects us is we make sure to wash our hands more often and we're more careful about letting the boys be around her and what of her they touch since they're not great at washing their hands. We now know that we'll have $3000 every year for probably the rest of her life that we need to add into our budget. We know that her life is safer than we thought before. She's currently sleeping beside me, alternately snoring softly and waving her arms around. She whimpers in her sleep, she wriggles in her sleep, she snuggles closer to the warm body she inevitably sleeps against. All normal baby things. And I wouldn't have it any other way. 

Wednesday, February 4, 2015

Lend a Helping Hand

I'm not good about asking for help for myself. I am slightly better at asking for help for my kids, but not by much. It's not pride or self-consciousness, it's a weird "well, they're probably too busy, I might as well do it myself." I have had a little bit of experience of no one even offering when I sort of needed it, so when I really need it, a part of me feels like it'll be a repeat of before. (Yeah, that's confusing but I don't want to call people out with specific situations so you get a vague intro.) As the news about Eden is making the rounds, though, everyone wants to help and that is so great. I really do appreciate the offers, though at this time I really have no idea what to tell you.

The main things needed with a newborn are meals, cleanliness, and time. Meals, I've got covered. My freezer and pantry are really full from my stocking up before she was born. Not to say we don't appreciate someone bringing us food, that's a freezer or pantry meal we can eat later. Plus I've definitely hit the "ugh, I don't want to eat any of this" so other people's cooking or take out is definitely welcome.

Cleanliness...well, we all know I'm not the best housekeeper, so my mom is helping out in that area and her housekeeper is going to start coming once a week starting Monday. My only issue with that is getting out of her way while she cleans. Its a good problem to have. She's cleaned for us before and she always does the master bedroom first so we can hole up in there and watch tv or read books while she hits the rest of the house.

Time is the biggest one and the hardest one to fill. I love my kids but I need time away from them to be a better parent. I'm exhausted just from having a newborn, not to mention the emotional toll her diagnoses have taken on me so the days that I don't have all three kids are precious to me. They're also the days we have doctors appointments so I don't get to nap much. I doze a little, wrapped around her body while she nurses and the boys leg wrestle on the bed and watch Thomas movies on Netflix. That's not terribly restful, but I'll take what I can get.

What would be great, but what I also understand is really hard for people to do, is for someone to take the boys or sit with Eden while I go somewhere with them for a bit. Or come hang out for a bit so I can have some adult contact that's not my family. Or sit with all three kids while I get away. Austin's good about this in the evenings, but its during the day that I feel most isolated. Not being able to go to playdates or MOPS or the grocery store is a bit stifling. Yes, I realize I don't get out a ton, but I do get out some with the boys during the week. And now that's not happening. I'm constantly tethered to a child in some way and if that's how it has to be for three months...well, we'll figure out a way to make that work without someone getting hurt.

Overall, we're doing ok. Eden is thriving, the boys are doting, and Austin and I are slowly starting to find our rhythm with three kids, me especially. We have our first visit with the cardiologist tomorrow and will hopefully get a little more information on what the future months are going to look like.

At the end of the day, though, we are appreciative of everything people are doing for us, even if it's just praying (which isn't really a "just"). Once we know more of what we need, we'll let people know, I promise. Right now, just keep doing whatever it is you're doing.