Yesterday we took Gigi to the Cardiology Clinic at our local children’s hospital for a repeat Echocardiogram. This is basically an ultrasound of her heart. She has had them in the past, but we needed a repeat to see whether we could get her to be more compliant with the test. It requires a certain amount of sitting still. If you’ve seen pictures of Gigi, you’ll know she doesn’t do a whole lot of that. She is a motion blur in most photos.
I posted to Facebook that I gave the probability of success at this without sedation exactly slim to none. Turns out, Gigi rocked it. I carry a bag comparable to what the Child Life people carry, but I also fill it with candy. Child Life isn’t allowed to bribe a child with all the potato chips she can eat. I, however, am, and, I am not above it. So, when the interest in the toys wore off, the potato chips and M&Ms came out.
Gigi had a live (not video relay) ASL interpreter with us the entire time. We have two regular interpreters and Gigi cheers when she sees them. It is SO nice to have someone there who can explain to her what’s happening. Yes, there were M&Ms and potato chips, but there was also language. She understands so much more then we give her credit for. She needs an interpreter at all times to help her. I can do it, but not nearly as well, and I need to focus on being her mom, not her interpreter.
After we left the echo room we were taken to the same exam room I was given the news about Tess in. I didn’t have Joe with me then either. When the Cardiologist walked in, I immediately broke into a cold sweat. She doesn’t have the best poker face. I could tell right away something was amiss. We knew Gigi had more than one Congenital Heart Defect. Her file from China had a surgical report in it that described the surgery she had to close her Patent Ductus Arteriosis (PDA). This ductus aretriosis should have closed when she took her first breath at birth. It didn’t. It remained ‘patent.’ An already ligated PDA is considered simple CHD. The procedure to close it isn’t complex.
Gigi’s file also listed two other defects: Aortic stenosis, a narrowing of the Aorta which supplies oxygen rich blood to the body, and Pulmonary stenosis of her left pulmonary artery, a narrowing of the artery supplying blood to the lung. We were hoping the aortic stenosis was at the valve level. This would make correction easy, if it even needed to be corrected. We were also hoping that the RPA stenosis was mild, even though it was listed as severe. If it was mild, it likely wouldn’t ever need correction. And, she looks so good, right? I mean, it must be ‘mild’, right?
We said YES! to Gigi’s file because her CHD was considered ‘simple’.
In my head.
In my head, Tess’s needs were simple too. That’s because my heart tells my head the most amazing lies sometimes. Seriously, I think it could talk my head into anything. My head is a sucker for my heart, y’all.
Tess’s CHD is considered ‘highly complex.’ Joe and I both agreed that another highly complex heart would be hard for us as a family. Cam is deathly afraid of ‘highly complex.’ ‘Highly complex’ has become synonymous with PTSD around here. We all have it because of what we lived through with Tess.
We needed to stay in the ‘green’ zone of the chart pictured above.
My head, it was duped by my heart…AGAIN.
Yesterday, we became complex. I say ‘we’ because we will now travel this road as a family, again. BOTH of Gigi’s pulmonary arteries are narrowed, and not mildly. They are BOTH severely narrowed. We will need more imaging to see where exactly the narrowing is, but the echocardiogram showed the pressure gradient as being very high. This means the blood in being forced through a very narrow space. In order to push it through, the heart muscle has to work really hard. Gigi’s heart muscle in her left ventricle is significantly thickened. It’s overworked. She can’t keep going like that. Eventually, it will lead to heart failure. We can also tell that Gigi’s aortic stenosis is NOT at the valve level. She has supravalvular aortic stenosis. This is much more complex to correct.
We are likely looking at open heart surgery.
Are we where we were with Tess? Not by a long shot.
Is this what we expected? Nope.
Is this what we were told to POSSIBLY expect? Hell yes.
We have a lovely Cardiology review from Little Hearts Medical. If you all don’t know them, and are considering adoption of a child with a CHD diagnosis, you should get to knowing them. Their Cardiologist was SPOT ON about all these possibilities for Gigi. Her file from China listed ALL her diagnoses. None of these were a surprise.
I have a little ‘sticky note’ saved on my computer. When people email me about a child with CHD and possibly adopting them, they often ask, can you tell me what this file looks like in comparison to, let’s say, Tess’s heart? It’s their way of asking without asking if this child could face the ‘terminal’ diagnosis that Tess did. I am VERY careful to say this, every single time…
Hearts are like fingerprints and snowflakes, no two are EVER created exactly the same way.
I can’t possibly predict what another child’s journey will look like based on a file. No one can. And, there are WAY too many external factors to give anyone guarantees about how hard a road they will travel as a family. It is the same for us this time. There are too many other factors at this point to predict how many surgeries Gigi will need, how hard they will be, how long of a process this will be for us. We just have to take it one step at a time. We have to put one foot in front of the other.
Someone wise reminded me yesterday that Gigi’s journey and Tess’s won’t be the same. They can’t be. My journey through this won’t be the same. It can’t be. I know so much more now. I am so much better equipped.
Maybe this was the plan all along?
Maybe I’m made of tougher stuff then I thought I was.
After all, my daughter sure is.
–FullPlateMom, who is getting ready to get her warrior on again, this time, for Gigi.