Ups and Downs

Today was an up and down day. The biggest up was when Clare had her breathing tube removed. She was such a happy camper for about 30 minutes afterward. But then that ended. If I had to name a benefit of having to see your child sedated, it's that you cannot see their pain (because they really don't have any when they're knocked out!). Clare had a hard time settling in today. And, as parents, we had a hard time watching her. We're fairly helpless when Clare is in the ICU. Her terrific nurses do all the work, but you take it personally as a parent when you cannot comfort your child. They're trying to wean her off her painkillers, but she obviously has a lot of discomfort. She is not on continuous morphine now, but the doctor did put her on an occasional dose of morphine, along with the methodone. However, this still was not working for her today, so she also got a dose of ativan (a nice happy anti-anxiety drug!). The ativan did the trick, and she settled right down. Then she was fairly content for the remainder of the day, except when she was being fidgeted with. As much as I hate seeing all these different meds pumped into Clare, I know she needs them. If she gets too agitated, it affects her blood pressure and respiratory rate, and she cannot rest and continue her healing process. As it is, the doctor has put her on hypertension medication because her blood pressure has been 20 points higher post-op than it was pre-op. She may go home on this medication, but hopefully it won't be a permanent addition.

The other big up today was that I got to hold both of my babies. My mom brought Jamie to the hospital (he spent the weekend with my parents, and then went home with Shawn this evening). Shawn and I had agreed to not let Jamie see Clare until she was transferred to the cardiac floor. However, the nurses encouraged us to let him see her in the ICU once her breathing tube was removed. All he would see was the oxygen cannules in her nose and tape holding the tubes to her cheeks. The rest of her would be covered by blankets. One of the nurses said that you would be surprised what a 3-year old can imagine, and it would be better to just let him see that she's all right. Jamie has asked constantly for Clare and was quite upset on Friday when we wouldn't let him see her. So we decided to let him in the room. He was great - saw Clare, gave her a kiss, then happily played with the Ninja turtles Clare "gave" him for a present - all was right in his world again. We definitely made the right decision letting Jamie see her. I was able to spend about an hour with Jamie in the playroom at the hospital, and we had a great time. He wanted hugs and kisses and to be carried around, so I loved every moment of it.

This evening, Clare had her arterial line removed from her wrist. Once that was out, I got to hold her. It was precious. She was upset by the removal of the line (it was stitched in place into her wrist), but calmed instantly in my arms. We both missed each other! I didn't hold her for long since it is difficult to manuever because she is still hooked to IVs and other pumps and monitors, but the ten minutes I had was wonderful. One of my downs today was that I saw her chest incision for the first time. The nurse had to clean it and change the bandage and said I didn't have to watch, but I felt that I needed to see it (since I am going to have to do this at home). I can't describe how it feels to know your baby's perfect skin is gone forever. I know it's just a cosmetic thing, but I never liked the idea that they were cutting my baby. The incision is about three inches long a little to the right of the center of her chest. It didn't look as nasty as I thought it would, but it still hurts me to see it. She also has the four sites of stitches from her chest tubes that I saw for the first time. It is so hard to see your baby covered in cuts, bruises, needlesticks, and stitches. But then I had the up of nursing her for the first time post-op. She only nursed for about two minutes, but it's a start. And she kept it in her tummy, which is a big thing. So it's been a long, emotional day for us! If all goes well tonight, we're going to be transferred out of the ICU tomorrow. That will be a big up!!