We went to cardiology on Tuesday, Jan 18th. Dr. English did another Echo on her heart. The hole isn't smaller. And to top it all off, Giselle hasn't gained any weight AT ALL in a month. I feel so down. I've done everything possible. I feed her until I feel like my nipples are going to fall off. She wakes up in the night and I feed her then too. I give her baby food a bit but I tried to cut all that out to give her more milk.
She is almost 6 months old and only weighs 11 pounds. The doctors say it's nothing I'm doing wrong and there is nothing I can do. The only thing that is going to make her grow is to get that hole closed. The thing is: The doctors are baffled. She should be showed signs of distress and breathing troubles and she isn't. She plays ALL day and breathes just fine.
They sent me next door to Wolfson's Children's Hospital to get an x-ray of her heart. They said she might now be showing any problems because she isn't using her lungs to do all the extra work, she might be using her heart. Which would mean her heart would become enlarged. X-rays came back normal. So that's not the problem. So they want to do a catheter to her lungs to measure the pressure going from her heart to her lungs. If it is high, this will mean she is using her pulmonary arteries to do the work, which can lead to swelling and possible emergency open heart surgery.
Everyone keeps asking me "How are you feeling about it? How are you taking it?"
I honestly don't know. I don't think it has hit me yet. I sort of go into a shock mode with all this stuff. Before Giselle, I never really had anything happen to me like this. I don't think my brain has ever had to cope with this sort of news before. But I can say the butterflies are growing everyday and I'm sure I will be a nervous wreck when the time comes for the surgery. As I have a right to be! They are going to open my little baby's chest! It's the scariest thing I've ever had to deal with. People keep trying to tell me she will be okay, but how do YOU know? Are you a fortune teller? Are you God? I don't think so. I know people are trying to make me feel better but constantly being told "She will fine, you have nothing to worry about" irritates the crap out of me. It makes me feel stupid for worrying. Unless you have personally had your child go through something like this, you don't understand. I'm not trying to sound cruel and I know people are just trying to make me feel better but this is my blog, these are my REAL feelings and you don't have to read it if you don't want.
Anyway, they are supposed to call us tomorrow to see what the next step is. I will keep ya posted!
Tina, you're doing wonderfully. The doctors are right, you're doing all you can to help her and there isn't really anything more you can do. Surgury is always scary, and so is the idea of your baby getting hurt but hopefully this surgery will be a hurdle that leads to much better things. I wish there was someway to make things easier but there really isn't.
ReplyDeleteBaby Giselle is doing wonderfully otherwise though and I know you, your husband and Giselle will be OK in the end.
Much love, and you are missed!
Rissia