We are at day four of Benny's recovery from heart surgery. Every day he does better and better.
Yesterday he had the breathing tube taken out around midnight. The nurse had told us that he wouldn't get it out until the next morning, so my mom had stayed and sent me to get some rest at the hotel with my mother-in-law, Nora. I woke up just after a dream that Benny was healthy and smiling at me, and was just telling Nora about it when my mom called and said that the ventilator was out, and Benny was awake. I could hear Benny making noises in the background.
It worked out well that I hadn't been there that night, because it would have been torture not being able to breastfeed him during his discomfort. They finally let me nurse him at 10:30 yesterday morning. It was so wonderful getting to hold him in my arms again!
We had several visitor yesterday, including Benny's girlfriend Everly! She wasn't able to come in and see him in person, but she wore her Team Benny shirt in solidarity.
Last night I stayed so that I could nurse him as needed during the night. It was a little rough, he has some congestion in his chest that made him uncomfortable, and the nurse tried to pull it out by sticking a tube in and suctioning. He really did not like that.
She also terrified me by telling me that if the blood coming out of his chest tube turned cloudy that it would be a sign that he could no longer digest proteins and he would have to go on a low-fat diet. This would mean that I would have to pump and have the fat separated out of the breastmilk before I could give it to him.
After months of having to nurse and pump and supplement I was really looking forward to Benny being strong enough to exclusively breastfeed. I started to freak out.
This morning things started to look up again as soon as Nora and my mom walked in the door. They both have nursing backgrounds, so know how to read all of the machines and translate for all the medical staff. (I really think hospitals should give out Medical to English language dictionaries for families trying to follow what their doctors are saying to them.)
They said that everything looked great, and they were right. Within a few hours the surgeon came and took out the chest tube and pacer wires. (The tube stuck out of his chest to release the blood and fluid coming from the heart, and the pacer wires they leave sticking out of the heart in case the heart doesn't start beating on it's own and needs a pacemaker.)
Benny wasn't thrilled about this process, but we were. All he has to work on now is continuing to eat, poop and go about the business of being a baby. As long as he continues to get better we should be out of the hospital in a few days! We are so happy with his progress, this is truly wonderful.
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!