It's been over a year since Maddison was born. I wish I would have written every emotion and feeling during my pregnancy and since she has been born. Time passes so fast and I want to remember it all. But a year from now I will have it all down and then some of what I can remember!!
We didn't have a lot of visitors during our stay. Since no one could see Maddison and we couldn't risk a cold for us before her surgery most people stayed away. The evening she was born Paula came to vistit. It was nice to see her and she made me laugh, like always. After the crazy wheelchair ride and visit during the NICU, it was good to be back in my room. I was pumping trying to bring in my milk so I would get up every two hours to pump. There really wasn't anything there but we kept the cholostrum and they rubbed in her mouth before surgery a couple of times. Which made me feel like it was worth all the pumping craziness. I never breastfeed long with each of my other children but I always tried. Everyone got a couple weeks, then I did the bottle. I couldn't bear to think they would be hungry. I was determined to breastfeed Maddison. Finally little ounces were starting to add up. She couldn't eat for an entire month so I had alot of milk stored up. I remember every day I would get McKenzie up and out the door. Then I would get the boys up and ready for school. Little Aaron off to Pattie then Adam off to Saint Matthews. Drive my hour or so to the hospital. I'd get to the NICU and wash up, then sign in. I remember thinking it was good to be home but so much easier staying in the hospital. I'd go see Maddie for a couple hours then I'd have to leave to pump. The pumping room was a great idea. There were three curtained off rooms. You could go in have a seat, get hooked up then read or whatever. I always read my book "Babies with Down Syndrome". It really gave me alot of information. I pumped alot so it was easy to finish the book. Then off to lunch at the cafeteria. It seemed like I called Karen alot during those lunches. She always made everything better and gave me so much support. I remember feeling so sad sitting there, thinking of everyone around me having a story and it probably being sad. Day in and day out eating lunch there alone. Then going back to grab up little Maddie and snuggle her up. After her surgery I remember sitting there thinking wow she could come home any day. Then day after day, week after week, she wasn't home. Easter was coming and I thought hopefully by Easter. But no, not Easter. She had a little NICU buddy named Addie. Addie's mom brought Maddison an Easter bunny. It was cute, but I was still sad not having her home with our family. We did the Easter morning with the kids, then off to the hospital. After the hospital, off to Aaron's parents house. It was sad to be there without Maddison. It seemed like such an odd life. I thought of all the families with children who had cancer. How hard it was for them. There is a cancer facility in Fairfax hospital so occasionally we would see kids there with cancer. It gave me the energy to keep going to know if they could through all that pain we could do this.
There were things that got us through each day. Sometimes they'd lower her meds and we'd get excited. Right after her surgery they only had her Tylenol to manage all that pain. I felt like she was such a strong baby. Such an amazing little fighter. Then they took out her pic line which felt like such a truimphent event. I remember when they put her in real clothes once. The clothes were awful but I loved seeing her in them. Depending on which nurse you had there were alot of different rules. In the begining we had an awful rocking chair. Then after being there long enough, I had the courage to ask someone if we could have a better chair. I felt really bad because they took the lounge chair from this couple that had a private room. They spoke Spanish so I couldn't really talk to them but I knew their baby girl was dying. She was brian dead and the couple was waiting for God to take her. I overheard the surgeons talking and it was really awful. The parents came every day. Then one day they were allowed to bring in their other kids. I knew it was to say goodbye to her. It broke my heart. I held onto Maddison tighter that day.
Each day we would stare at her repogal. That is the output coming from her stomach. It was alway green. We waited for it to be clear. Each day it was not. Then they took her off of her oxygen. That was a great day too. Maybe not clear repogal but always something good. Something to let us know she was healing and getting better. They let me do Kangaroo Care. That is were you can hold your baby on your skin. Skin to Skin, just like at home. I loved it!!!!!! I knew she was fighting to get better to be home with me and the her sister and brothers.
I'm not sure what Adam did during the days..... I guess Aaron or his mom picked him up. I know my parents were here when they could be. It's hard to believe you never leave your kids, never! For 15 years, Your always, ALWAYS, the one who picks them up and drops them off. Then all of sudden your depending on other people. The days were long at the hospital and lots of times I would be home to get Aaron and lots of times I stayed until 10:00. Sometimes when Aaron would come up see her we'd go to dinner. We ate at Sweet Water Tavern a few times. I remember one time we were eating there and a family was there with their son who had Down syndrome. He was older like 30's or so and the parents were alot older. I guess that was my sign that life goes on and we would get through this just like everything else we had ever over come. I think that was the moment I made my decision to let myself be happy and know Maddison wasn't going to die and I would really get to keep her. Then sure enough they said we could bring her home. I was so happy. Part of me was a little bit scared but not to much I had done this three times before!