Our Congenital Heart Warrior!

Our Congenital Heart Warrior!
Rockin her Red!

Thursday, May 5, 2011

3 month post-op checkup- almost 9 months old!

I haven't written anything in awhile because things have been going so well. Addy is growing well and acting like a normal baby! She is up to 16 lb and 12 oz now! She is eating a lot of foods now but getting all of the formula in her that she needs is now a struggle again because she just doesn't want it! Unfortunately my child has taken after both of her parents in that she likes good food so she doesn't want to drink that nasty ole formula! She will drink water (or whatever I am drinking) out of a cup for the most part, but when you put formula in it she is like "no thanks!" We are now crawling....or scoot/crawling everywhere! My mother says that Addy is just like me when I was this age. I do not have a child that you can take to an event and she will will sit quietly on your lap. No, my child is flipping around in your arms, jumping up and down, turning upside down, and being a monkey!


Addy had her cardiology appointment today for her 3 month checkup following the Glenn surgery. On one hand it seems like we just had our last appointment. On the other hand it seems like it has been forever since we have seen them! Her blood pressures were a little higher and her oxygen saturations were a little lower than they like so that bought us an Echocardiogram compliments of the house just to make sure everything is ok. Clinically, Addy could not look better. She is nice and pink, warm, and active! Her echo showed that her arch is nice and wide open. The Glenn looks good and where they augmented her right pulmonary artery looks great. The only thing that is concerning that her left pulmonary artery (which looked fine at the time of the Glenn) was a little smaller than would be expected. This could mean 2 things 1.) They were just unable to visualize the area very well because it's difficult to see on a wiggly child... or 2.) this part of her pulmonary artery isn't growing along with Addy the way that it should. If this were the case, if it gets severe enough before the time of her Fontan, she will have to at some point go to the cath lab and have a balloon angioplasty done to widen it. Otherwise, they would aument it at the time of the Fontan. The only ways to tell for sure what this vessel really looks like are either by a sedated echo so that she isn't moving or by cardiac MRI (which she also has to be sedated for). A sedated echo is fairly simple, but they can only do it if her sats are above 80%. Otherwise, cardiac anesthesia will have to sedate and intubate her for a cardiac MRI...a little bigger of procedure then. So for now we are scheduling the MRI and I am going to monitor her sats (something we haven't had to do for 2 months) for the next few weeks to see if they really are running in the 70's most of the time.

I wouldn't say that I'm upset but of course I'm concerned. The concern never goes away when you have a child working off of half a heart everyday. I think it's almost like I expect something to be not quite right every time each time we go for a checkup. Addy has had a good run so far, but I know that no child is without the ups and downs associated with being a single ventricle. When Heath and I tell people about Addy, they often ask whether her heart can be repaired, and will surgery fix her. They think, oh ok, she is doing good so everything is great. If only it were that easy. How can I convey to people that even though technically 3 surgeries will "fix" her heart, that is only just to make it physically compatible with life. Over the years, she will still likely encounter these kinds of things. There will always be echos, caths, and EKGs to make sure everything is functioning just right. She will always stand the risk of going into complete heart failure and needing a transplant. There is a good chance she will need balloon angioplasty's or valve repairs, or some other kind of maintenance surgeries or caths in the future as maintenance. It's unsure at this time how much activity restriction Addy will have. Some kids run and play sports, but others just don't have the energy.

So immediately following our last appointment, Heath and I decided we were done with the feeding tube (see previous posts) Addy has done wonderful and as you can see according to her pictures, she looks perfect! She's not thin, but she's not a sumo baby (which cardiology likes to make by making tube feeding dependent children and leaving them on strict feeding regimens of high calorie formula for FOREVER!) Well, apparently Addy is only sitting at the 25% mark on the growth/height chart now. Her doctor said if she falls anymore, "we will have to consult with nutrition" First of all, last I checked anywhere between 10% -90% is considered acceptable. Second, if my child didn't have a heart defect and you looked at her, would she still be concerned? Third of all, after our last checkup when I asked about where we should go with nutrition they told me to talk to my pediatrician about it because she could handle it from now on- OK then, so butt out! Fourth, is the fact that Addy is almost 9 months old and my cardiologist is telling me that I need to make her drink more formula and eat less food...because the food isn't going to give her the calories she needs. I'm sorry...are we going in reverse aging? Last I checked as babies got older, they were supposed to eat more food! I just have a problem with the fact that as we near a year old, they still want us to shove this formula down her throat all day instead of eating like a normal child. At 1 year we switch to cow's milk, which is about 20 calories per ounce. Right now we are on 27 calories per ounce. So what are we supposed to do then- feed her formula until she's 2 years old? It infuriates me when doctors look at a chart which show's a Bell curve of what MOST children fall within and say that my perfectly nourished child is too small.  Who exactly made this chart that says you're not feeding your child enough if they don't follow this curve to a T? Ok, so what I am going to do then is a nice little calorie count for the next 2 weeks to show them that she is getting plenty of calories, and growing just fine. I know my child better than they do. Sorry, that's my rant. Those that know me well know that the way they treat feeding and nutrition is something that I feel is a big issue with taking care of heart children, even at our "top notch" facility.The pics don't look like she has any trouble eat does it?
 Baby girl loves her oatmeal in the morning!

Do I have any on my face? 


Recently I saw a posting on fb about a single ventricle woman that had a child. In the past it typically hasn't been recommended for women with a SV to get pregnant due to the strain that it puts on even a healthy womans body, much less half a heart. Although some have been given the OK to get pregnant medically, the risks are still huge. Who knows where we will be in 20 years with care of these patients and how far technology will have come along to help them make it safer.This brought back the memory of the day that we got the definate diagnosis of Addy's heart condition. We were 24 weeks pregnant, and 24 hours before we thought we were having a healthy baby girl. Heath and I had just clung to each others' hands as we watched an echo that we knew didn't look good. The mourning had already begun before she even told us exactly what the details were. I remember our cardiologist going over all the statistics, options, and what the future looked like (Which we both already knew better than we ever wished) I remember her telling me that the likelyhood that she would ever be able to get pregnant and have her own babies was small. Something about that has always bothered me. For one, I feel like when we are discussing whether my child is going to live past infancy to adulthood or not, I feel like adding in the second left hook that, "oh by the way, if she did, she could probably never be a mother" is just a little insensitive. At that time, what we were most concerned with was were we ever going to get to hold our baby and take her home. Now, I feel sadness at the possibility that Addy might never be able to experience the joy of carrying a baby in her body, the bond, and being a mother. Will she be angry if she can't? Will she put her own life at risk to have that experience? There is a 20% chance that a woman with CHD will have a child with it as well. This is just one of the things that as a heart mother we have to consider, that other mothers don't.

 The first time she has ever had enough hair to put a bow in it (just barely)!




Ok, so now that I have hit all he high points and blown off some steam I will keep updated on how her sats look and if we wind up doing the cardiac MRI or sedated echo. Right now both girls have a nice little cold so Addy is a bit of a beast. I'm hoping it doesn't get any worse than it already is but it still worries me. It's hard not to freak out every time she gets sick when you know that a cold could potentially put your child in the hospital, or on the ventilator. More soon to come....enjoy the new pics, I might be prejudiced but I think she 
sure is beautiful!
 Modeling her new swimming suit for the beach!




Taking baby steps, just need a little bit of hand holding still!