Mary Clare’s Progress…
Yesterday, Mel and I went to MUSC for our last cardiology appointment before delivery. (I’ll continue to have weekly OB visits) Her heart was much larger and Dr. Forbes could really see much more on this visit. We met with “Dr. Tony” on our last visit, and were a bit disappointed that we didn’t see him, but Dr. Forbes turned out to be just as wonderful as Dr. Tony! He was another young, very positive doctor! He was extremely knowledgeable and told us, in so many words, that this is a “classic” Hypoplastic Left Heart Syndrome case. I know that we have know this all along, but there is always that tiny glimpse of hope that one day I’ll wake up and her heart will be perfect.
The surgeon did say that she had no fluid around her heart and that her normally functioning valves had no leakage, which was a great sign. (So really, she is a strong baby and we have the best case scenario, as far as a baby with HLHS.) These valves will be used to re-route the blood flow. He had lots of other “surgeon verbiage” that I can’t even begin to remember. Mel was a bit helpful. He remembered some of the names of the different valves and vessels, etc. from school. The surgeon also told us that by the end of all of this we will know more about the heart and heart surgery than we have ever wanted to know!
He also gave us a tour of the Neonatal Intensive Care Unit for “heart babies.” (He personally walked us down and explained everything, which I thought was wonderful. The simple fact that he cared enough to take time to show us around was a simple gesture that meant the world to me.) We walked down the hall to a large spacious room with a huge nurses station in the center. On the left was a row of 6 baby cribs and many machines. On the right were smaller, open rooms for more chronic patients.
There were three babies on the open side, where Mary Clare will be after surgery. This was probably the most difficult thing for me to see and to realize so far. Mel was more interested in what different machines were and how they worked, the hours of visitation for us, etc. and all I could see were the precious babies in the cribs. One even had HLHS; I knew because asked Dr. Forbes. Mel asked me later why I wanted to know if any of the babies had HLHS, and I couldn’t tell you. I guess I just felt a bit better knowing that she wouldn’t be the only HLHS baby there.
Of the three babies, there were two dads sitting with them. Thinking back, it was probably a good thing I didn’t see a mom there at that time. I know that there were three moms who were just as worried as I will be, but for some reason, maybe a shower, lunch or just a break, they were out at the moment. I already feel a camaraderie with those moms who are going through the same thing, so to see them worried and hurting along with their babies probably would have been too much for me yesterday.
It was very difficult, but I’m so glad we had an opportunity to visit before actually seeing Mary Clare there. It is a brand new facility and each of the nurses and doctors that we saw were extremely knowledgeable, concerned and caring. We are so lucky to have MUSC so nearby.
I also had an OB appointment later yesterday afternoon. Believe it or not, I’m already about 2 centimeters dilated, which really doesn’t mean much because I’m not in “active labor” yet. They monitored Mary Clare’s movements, heartbeat and any contractions that I may be having. Her heartbeats were strong, she moved LOTS (which I knew anyway) and I had one contraction in the 30 minutes that they monitored me. I’m 34 weeks along and they really want her to be as strong and as big as she can be as a “heart baby,” and go as long as possible, so they want me to watch things and “take it easy.” (they obviously don’t know McCanless or Mel) Hopefully, I won’t have her too soon, but if I haven’t had her by 38 weeks, which is the week of June 18, they will induce.
I know I’ll never be fully ready for this, but every day as it approaches I feel a bit more secure and a bit stronger. I already know that she will be a fighter and I know that God is with her and with us. We feel sure that in about 3 years, we’ll be complaining about her sassy mouth and attitude, attending never- ending dance recitals (to see 2 minutes of stomping tap shoes), and love to “mush- mush face” with her just as we are with McCanless right now!
