3 Month Cardiology Appointment

I just took Wyatt in for his cardiology appointment. These appointments always freak me out. I get so comfortable with our home life and the way things are going, that when a cardio appointment comes up, I become terrified that we are going to go in, and the echo is going to show that something is wrong. I am sure that this fear is one that every heart mom feels. It is so easy to forget that  Wyatt is sick when we're at home living our day to day lives, and that bubble could so easily be popped.

Anyway, his cardiologist said that Wyatt's heart function still looks great. He has some increased velocity in his aorta and his shunt, and his O2 sats are starting to drop. All three of these things are not necessarily good, but are expected. The Norwood was not meant to be a procedure that would carry Wyatt very far. It is a procedure that buys Wyatt some time to grow and get bigger and stronger so he can have another surgery. The fact that the velocity is rising, and O2 sats are dropping simply means that the Norwood did it's job, and the time for the Glenn is approaching. We upped Wyatt's Enalapril, as his blood pressure was a bit elevated. (Side note to all you new heart parents: WATCH EVERY DETAIL CLOSELY AND ADVOCATE FOR YOUR CHILD! The cardiologist re-wrote Wyatt's prescription for Enalapril with the assumption that Wyatt was currently taking 2.5 mg/mL - meaning they formulated the medicine to have 2.5 mg of Enalapril in every 1 mL of liquid. (this is the standard concentration) Because babies can't just pop a pill and their medications have to be compounded, those medications can be made however the doc would like. Wyatt's new prescription was written for 1.2 mL PO BID (by mouth, twice a day) of the 2.5mg/mL concentration, meaning he would be taking 6 mg's per day. His current concentration is only 1mg/mL, so he is only taking 2 mg's per day. Had I not caught this, Wyatt would have been taking triple his normal dose, which may have lowered his blood pressure too much.) We also scheduled Wyatt's catheterization for January 30th, and are expecting the Glenn about 2 weeks after that. The cardiologist did say that Wyatt is growing tremendously, and that he "wishes all his hypoplasts grew like that". :)

So, 3 weeks from today, we will be back in the hospital. Wyatt will have his cath, and we are expecting an overnight stay afterwards for observation - as that seems to be pretty typical with HLHSers and their caths. Then, right around Valentines Day, we are expecting the Glenn (I never liked that holiday anyway). Ugh. This momma is not ready to hand her baby back over. Don't get me wrong, I love our team, and I trust them. I love that our communication with them is so open, and that I can call and ask questions any time, and that they will always listen to me. I trust Wyatt's surgeon completely. That does not mean I am ready for my baby to go back under, go back on bypass, be opened back up, have another heart surgery, be re-intubated. I am not ready for any of that. No amount of time will make me ready, however, and I know that. 

I just have to keep telling myself that it's a step in the right direction. I wish with all of my being that Wyatt just had to have the Norwood, and the nightmare was over. I wish that we could look back on it, recognize that it was complete hell, and be able to move on. Unfortunately, that isn't how HLHS works, not even a little bit. And I imagine that after Wyatt has his Glenn, we are going to get REALLY comfortable with life, since we won't be expecting another surgery until his Fontan, around 2-3 years old. 

When we were first diagnosed back in May, I had a hard time imagining Wyatt growing up, playing, laughing, etc. It was hard for me to get past his heart defect and imagine any sort of normal life. Now that we are living it, I can't wait to watch Wyatt learn to laugh, sit up, crawl, play, walk, run, etc. I imagine all of those things for him because life is no longer abnormal. This is our new normal. And while parts of this new normal are really difficult and painful, it is ours, and it provides us two smiling, wonderful boys, so I love it. 

For the next 3 weeks, I will be cherishing each and every moment we are home (moreso than I already do). Because I know first hand the hell that is coming, and even though I've already lived through it, I don't think I remember the pain. They say that women forget the pain of childbirth so they will do it again - I like to think this is a similar situation. I can't re-create the pain of Wyatt's Norwood in my brain. I can clearly imagine the pain a paper cut causes, or stubbing my toe, or having my heart broken. I can't re-create that pain, it is just way too strong. 

Oh! Also! We have been waking Wyatt throughout the night to eat, about every 3 hours, as instructed. And Wyatt's cardiologist told me today that we no longer have to do that! Wyatt is big enough, and his weight gain is steady enough, that allowing him to sleep through the night (if he chooses - we will see how this goes) is ok! Of course, I will continue to monitor his weight, and if his gain is negatively affected, we will adjust as needed, but still...this momma and daddy just might be able to start getting entire nights of sleep! Yahooo!