I have really been struggling since Thanksgiving for some reason. I look back to the beginning of this journey, and realize it hasn't even been a year. It was Jan 4 of 2011 that I started eliminating all Dairy and Soy from my diet, thinking Sam's lack of weight gain was due to an allergy in my diet. It wasn't until Jan 19, 2011 that I started the T.E.D. diet which lasted into the hospitalization and realization that my baby boy was born with "half a heart" as it is commonly said, and that my diet was the least of his worries. The hospital journey wasn't until March 2, 2011.
How is it possible that it hasn't even been a year? Only nine months...really? That's it?!? That's how long I carried Sam. That is UNREAL. Really, so unreal I truly cannot articulate it with any accuracy. Words don't capture the severity, the weight, or the truth of what I feel.
In meeting with the Ann Arbor cardiologists for the first time last week we had some unsettling news, without any substantial information behind it. Unfortunately, they didn't tell us to have Sam fast for a sedated ECHO, so our visit didn't include one...we go back on Dec 28. Without the "picture" of Sam's heart, they don't really know anything, yet. There is some mention of a concern that his weight gain has significantly slowed. That said, our physical therapist in Chicago had warned us this would happen due to his increase in mobility. He's just burning calories right, left and sideways!
There was also some concern regarding his blood pressure reading much lower in his legs than in his arms. The doctor said that can be a sign of problems with the heart, but my gut says he is ok. The thing the doctor said that really threw me for a tailspin though, is that they do the next surgery MUCH earlier in Ann Arbor. A full year earlier. Typically they do the Fontan between 18 and 24 months. I'm sorry, what?!? But I'm not ready. I'm SO not ready. Like 120,000% not ready.
So I wait. I wait for the sedated ECHO. I wait till Jan 25 to hear what they see on the ECHO. I wait, and pray, and hope that Sam's heart is looking as good as it can, and that they are wanting to hold off on the surgery for awhile. I don't think I'm strong enough to go through all of this again just yet.
Wow...I knew some places were doing the Fontan earlier and I have seen other babies having theirs done at that time...really glad our cardiologist likes to wait. We are looking at 4-5 before Hope's Fontan. She is also having problems gaining weight, but we are making progress. I have found it helpful to get her weight checked every two weeks...that way we can adjust her diet earlier. They didn't seem all that concerned until they realized from her 1st to 2nd birthday that she only gained one pound...ouch.
ReplyDeleteAnyway...you will be in my thoughts and prayers.