Doctor's visits

Today Anya had her monthly follow-up with Newborn Medicine at Childrens. She also had a cardiology appointment with a cardiac echo, basically an ultrasound of the heart. These are done routinely to check out the increased pressure she has because her normal heart is trying to pump a normal amount of blood into smaller lungs.

Historically they have had a hard time seeing all the pressures because Anya’s heart is in such a weird place. Her defect was so large that her heart grew against the side of her right chest, and it is still over more that way. Her heart is twisted around as well. Everything works, and it isn’t causing her any problems, but it does make it difficult to get a picture. Just another example why taking care of a CDH baby isn’t straightforward.

Anyway, the pressures looked good, as far as they could tell. They were concerned about her superior vena cava, the vein that drains blood from the upper part of the body. Hers has narrowed, and her head is growing a little faster than they would expect. They are worried that there is some increased pressure there that is causing her head to be larger. The narrowing can happen with ECMO, in fact is very common, but they were still concerned. To evaluate and/or fix it they would do a cardiac cath (of course) and could decide mid procedure if it needed to be treated.

Now I think I have discussed my concerns about a cath; it is a relatively safe procedure. Mostly I am concerned about intubation and just the possibility of more intervention on my kid. He was talking about stents and balloons and I was following him, I did a brief stint working in a cardiologist’s office. All I was thinking is if you stent her what is the follow up going to be, what is that stent going to do in 10, 20 years? Even in the best case scenario she is going to need follow up and perhaps more caths to check up on that thing for years to come. It bothers me when procedures are suggested with a discussion of what ‘normally’ happens: immediate extubation and then a night in the hospital. When this happens it makes me feel that Anya’s history has not been taken into account. In my opinion it is foolhardy to assume that Anya’s physiology will respond like a ‘typical’ case.

Now it is very likely that Anya has grown enough now and she would do great, and everything would go as they say. However, the general feeling I get about treating CDH babies is that to a certain extent you need to let them find their own way. This includes how they grow, how they develop, and perhaps how their bodies work. Maybe this narrowing is just another example of how Anya varies from the norm? I don’t know, but I do feel like one of the reasons I am Anya’s mom is because I know how to ask these questions, and I am not afraid to ask them.

It is quite awkward however, for this people pleasing female, who as a nurse is not used to questioning doctor’s authority, to go to a world-renowned children’s medical center and question the suggestions of doctors who are experts in pediatric cardiology, especially when they are recognized as leaders in the treatment of pulmonary hypertension. Yeah. That’s my job.

Thankfully the next appointment with Newborn Medicine went well. Turns out that Dr. N is not convinced that the narrowing is something that needs to be acted on. She is going to talk to the cardiologist and get back to me. I remember a conversation with Dr. Kays about how CDH babies have big heads, and it is a normal thing for them. Hopefully this is all it is!

So on to the fun stuff: We are weaning o2 and meds! We are down to half a liter of o2 from one liter a little over a month ago. Every week to two weeks we will go down a little more, so maybe in July we will be off o2?!? Feeding is still an issue but Anya is starting to lick the spoon a little so we are seeing some minute improvements.

I am more excited about getting off oxygen than I can say. I am seriously considering having a bonfire and burning all o2 related disposable equipment. Anya will be fascinated, she has never seen fire, I don’t even burn candles in my house for fear of explosion.

It is embarrassing but true that I am excited about getting off oxygen mostly because it is a pain in the ass. Like a major pain. Knives. No, no, infected knife wounds in the ass. That would be more descriptive. (Don’t ask me how those get there, I don’t know)

Being oxygen dependent makes it really difficult to get anywhere. There is so much to plan. We have to know approximately how long we are going to be gone to make sure we have enough tanks. At ½ a liter, a tank lasts about four hours. This winter when we were instructed to go up to one liter I almost cried, because that doubled the amount of tanks I had to deal with. Not only toting them around but planning a week ahead: what do we have going on this week? Do we have enough for over the weekend, that appointment? You have to call ahead at least a day to get tanks delivered.

Then when we are actually out, I am carrying Anya and a tank. The tubing is constantly getting wrapped up in stroller wheels no matter what I do.  I make everyone nervous as the tubing starts wrapping around my leg as it is wont to do. I have gotten pretty good at knowing where it is by feel so I don’t trip, but if we had a dollar for every time we tripped on it we would be rich indeed.

I have to worry about the tank itself when we are out: is it almost out? Is it in a good position so it won’t be knocked over and explode? Is that woman smoking over there? It is like having another half of a child to check on.

Then of course I have never really gotten to know Anya’s face without some oxygen accessory on. I see babies at the park and wonder where their oxygen is. When my nephew was born I marveled at the fact Jen only had to carry him around, and not anything else!

Haven’t even gotten to talk about what oxygen does to Anya: she gets clotheslined nearly every day when we trip over tubing and it tugs on her face. She gets nosebleeds. OT thinks that always having air flowing makes it difficult to eat and protect your airway at the same time. Home oxygen therapy is a blessing, I am so glad it is possible, but man when the man comes and takes that stuff away. That is going to be a date to be remembered.

So if you made it through that little rant just know that despite the complaints everything is doing really well, and we are definitely having more fun! I am very excited about planning Anya’s birthday party! Here are some pictures I took for the invitation:

Pretty smile and bare toes!

I am getting hungry, so I am sticking out my tongue!