So I wanted to type more about what happened in Addison's life between her birthday last year and the magical day five weeks later that they finally released her to come home with us.
To be honest, I don't remember a lot of details. It is a blur. Those days included me hauling myself all the way up to NICU every day (if you only realized how far the NICU is from the parking lot, you would agree that it is ridiculous to ask a women recovering from childbirth to have to walk that far) to sit by the side of a sleeping baby and to hear medical professionals preach doom and gloom about her health. If it wasn't one thing it was another.
Just to give you an idea of what we were dealing with, after five weeks of intensive 24 hour care and treatment, they sent us home, listing these as her problems to follow with regular doctor's appointments...for each problem:
1. Trisomy 21
3. Feeding Difficulty
5. Pulmonary hypertension
6. Conjugated hyperbilirubinemia
8. Transient abnormal myelopoiesis
11. Feeding by G-tube
So you can understand why the NICU stay was overwhelming. One day they would be obsessed with the fact that her biliruben wasn't coming down. The next day, they would give a blood transfusion either to help with the anemia or to help with a clotting issue. The next day, they would inform us that even though they jiggled down her oxygen a couple of percentages down from 100% the day before, we were going to have to go back to 100% because she wasn't keeping her stats up. They weren't sure which problem to focus on because they were all so serious, and a lot of them depended on other problems being fixed. Listening to the residents summarize her case during morning rounds was an absolute riot. I enjoyed firing back specific questions to make sure that those over confident medical staff had actually read Addison's chart (it was my only amusement). Throughout it all was the problem that she couldn't suck on a bottle, and they were convinced that if she did take any food by mouth, she would aspirate and get pneumonia because of her low muscle tone. The worst moments were when they would suction her out to help her breath better and she would get so very, very angry. They would just hold her flailing arms down and I could do nothing but watch. I couldn't comfort my baby.
I spent my days mostly all alone. Sitting in the isolation room- playing music for Addison- taking pumping breaks- desperately trying to figure out what all of her wires were attached to and praying that I could hold her just once that day.
Addison struggled those 5 weeks. Struggled to live. We were told so many things- false hope, false negatives, real negatives, very little real hope. The biggest issues was her pulmonary hypertension, which actually took them a few weeks to sort out. This is why she needed so much oxygen assist. This is why she was sent home on oxygen. Her weakness in breathing contributed to her eating issues.It was a dismal time. Full of loneliness and uncertainty. And all I wanted was to hold my baby and take her home. I had to follow an incredibly difficult path to get that wish granted.
But looking now at my healthy little girl, I am so thankful. It was all worth it to get my little girl home. Giving up seemed like the easiest option at the time, but giving up would have robbed us of so many blessings that we have experienced in just one year of her life.
Just goes to show you how far one little determined girl can go in one year.
Thankful that God is good, and that He has brought my daughter into such robust health.
This afternoon is her one year checkup with her Pediatrician. I know he'll make a comment to the end of not able to believe how far she's come. He says it every appointment.
But can you really blame him?