Interstage sucks. This time period between the first and second surgery is considered the most difficult part of the HLHS journey. Today we had an appointment with the GI specialist with very little bedside manner. Today was one of the most stressful days I have had in a while. It was the first time I had not been able to meet a deadline at work. I left my house later than I wanted to and was late getting to the hospital after being in a lot of traffic. I didn’t have a chance to get my amazing husband anything for his birthday, no cake, card, no gift. So Chris and I have spent both of our birthdays at Children’s hospital.
At home, our days are defined by feeds. Before feeds, during and after feeds, which is when we assess the situation and plan for the next feed. We write down every cc she takes in, if she throws up, what her sats are. Her weight. We do this everyday. The binder has become an integral tool to bring to the hospital with us and allows us to answer the many questions the doctors have about her weights, sats, and how much does she take a day. Today we were shown via a growth chart how much our hard work has paid off. But it isn’t enough. It’s not enough that I have sacrificed breastfeeding for the greater good of calories gained. It’s not enough that we isolate ourselves and Isabelle, keeping her from family and friends. It’s not enough that we miss Elizabeth’s events at the school, or Adeline’s needs for attention. It’s not enough to worry about color changes, oxygen levels, and the signs that the next surgery is coming.
Nope. Now I have to give up all of the foods I eat in order to provide her with a hypoallergenic milk. I can’t have milk, ice cream, cake, (well, I couldn’t anyway being on Weight Watchers and all), eggs, or cream in my coffee. I can’t have anything made with eggs. Which means no potato latkes for Hanukkah coming up. Pity party? Yes. Yes it is.
I was on Facebook tonight and am jealous of the normalcy I see everyone else having. I would love to have a debate over what lights to use on my house and tree instead of trying to figure out how to celebrate the holidays from my house without any of the foods I enjoy. I would love to be able to go out for a run and not think about how she may never be able to. I would love to have some of the problems I see people have on here. Please! Give me a small problem instead of worrying whether she is still with us in the morning or not. Yes, I do look in her crib every morning and place my hand on her to make sure she is warm.
This life is hard, and I would love for nothing more than to forget about it for 5 minutes. I am weary of all of this change that I am being tasked with. I tried to have some normalcy last weekend when some friends were in town. We didn’t meet up, because it’s awkward to be with someone who doesn’t drink and who has a lot going on like a sick child. Actually, I really can’t say that. I don’t know why it didn’t happen- I can only assume. But even though I understand that my life can be a downer for some people, I really wanted to see them because they represent who I used to be and a time in my life before I became a complete lunatic. I needed to see them and perhaps that wasn’t what they needed. It hurt, but I can honestly say they have been some of my biggest supporters online and I am eternally grateful. It’s funny. Last friday night I felt like I was 10 again not invited to the sleepover. I digress. I am way overtired and probably should have my editor come and look at this.
These sacrifices- food, friends, holidays- it is taking a toll. The cost is high and I found myself wondering if I could continue to afford it. How much more do I have to do? I love her so much but it’s just really hard right now. February can’t come soon enough.