At birth Lily had a LOUD murmur. Some babies are born with an innocent murmur that goes away with time. Not Ms. Lily she was later diagnosed with Supra-valvular aortic stenosis and Pulmonary stenosis. What this means is that in the two major arteries of her body she has significant tightness. She had surgery at 4 months of age to correct this problem, the hope being that as she grew the arteries would grow also. It seems that her aortic area grows as she grows but still has some tightening, this is a change from August where it was indiscernible. But the pulmonary is the biggest problem, right now. One Week post surgery before she was put in the step down unit after being in the ICU the sonogram had trouble finding the pulmonary branches of the artery. So they did a catherization saw it, looked good went on to the step down unit and we were home 2 days later. Well same thing is happening. We spent an hour on Monday trying to keep her positioned for the sonographer to get a good picture of the pulmonary branches. The sonographer was not happy with the pictures, she couldn't get the angle and Lily was getting upset being prodded for an hour. The pictures she did get showed some tightening in the branches. In doctor speak, her gradient in the right branch was 78 and left was at 46, it needs to be between 10 and 16 for "normal". Her aortic was at a 10 in August and was up to 26 yesterday. There was no real pressure on the heart at this point, however it could get there eventually. The doctor then started to talk about getting further imaging. This can be done with an MRI of the heart and lungs, or a catherization. Her cardiologist prefers the catherization since if there is something that can be done, they are already in there; this could mean ballooning of the artery or stints. However if it is more than just a small section, it could mean more surgery.
So now we are not glowing we are waiting. Her case file, pictures and pertinent information go to the panel. This includes her surgeon, her intervention doctor (catherization doctor) and even the doctor who performed her last MRI will be there. They will discuss her and decide which course of action they are going to recommend. So we know somewhere probably in the next month we will be headed back to Egleston at o'dark'thirty in the morning for sedation(she is only two and is NEVER still) and one of two procedures and then after that who knows. We do know that after both an MRI or a catherization it is 98% she would come home that day. Under 6 months they may stay the night of the cath. We won't know even if she was discussed until next Wednesday. I almost wish the doctor had fast tracked her so that we would know what was going to happen, but not being fast tracked is good news meaning she is in no immanent danger. I feel that we won't be doing anything about it for a month.
We had planned to go visit Granma and Poppop in Florida for our spring break, but who knows if that is going to happen. I feel like I am whining when there is so much going on in the world that is larger than me, but I wasn't ready for this yet. The doctors had told us about scar tissue and large growth periods and when they would watch her more closely, it is not supposed to be now. And yes I know in the scheme of things an MRI or a cath are not that big of a deal, but I am freaking out a little. I mean heck we can't get her to sleep alone through the night in her own bed for more than a week. I know I coddle her but wouldn't you????? How can I say no to my baby who has been through so much and will go through so much more when she says "Momma sleep me" meaning she wants me to lay down with her until she falls asleep. Or how do I not comfort her in the middle of the night when she just wants to cuddle after a bad dream? Having lost a child only I knew and held for only 20 gestational weeks, I can't and don't want to think I could lose her too. And then there is Grace, what do we tell her? She doesn't need to know, but I know she feels our stress and is affected by our diminishing moods. When they say depression affects everyone, oh YEAH IT DOES. Even if not clinically depressed, worry, stress and the winter blahs can make things bad.
So for now, we are not discussing it,
