Ok, so we know he has Downs Syndrome now, his surgery was successful, and now we begin the recovery. I am told it might be up to a week before they even feed him and that healing is going to be a process. We have a beautiful boy to love. He is healing, he is sweet, he is adorable and he has the best hair! He mostly sleeps and Eric and I take turns holding him and rocking him. I am still in the hospital and I talk my Doctor into letting me stay until Friday because I am still so swollen. I am on the 6th floor and he is on the 3rd. I take the elevator down in my lovely hospital gown and just go stare at him. He is not the baby I pictured having, but he is perfect and a miracle and mine!
We had also learned that he has a VSD (hole in the heart). They are not viewing this as a major concern and were ok with him going under anesthesia for his surgery and say that they are going to continue to monitor it and will wait until he is 5 or 6 months to do anything about it. So we just add that to our list.
So emotional the next few days as we just bond with our baby. I watch every little expression that he makes and fall a little more in love with him. It is so sad to see your baby in that environment. You feel helpless and just wish that they are not suffering. He slept so much the first few days, I sometimes just watch him lay there and picture what his life is going to be like.
The worst was on Friday, March 30th. I had to be discharged from the hospital. It was so depressing to have to leave the hospital with no baby in my arms. I was just going down the road to the Ronald McDonald House, but it felt like I was going across the world. I carried this boy for 9 months and I just leave the hospital with nothing but a post pregnancy body. All the events that had transpired along with the hormones made me a mess. I cried at everything. My world was no longer how I pictured it to be, I was trying to be positive the best I could, but I just wanted to curl up in bed and sleep for a long time. I was so depressed. However; my boy needed me so I checked in at RMH and was greeted by some of the nicest people. Different groups came in every night and made dinner for the guests. That night someone had made a wonderful casserole. Eric and Kierstin ate with me and I remember feeling so hungry, I had two helpings and then I realized, I had not ate in a few days. Probably not good for someone trying to produce milk for a baby. I did not even notice, I was in such a fog.
It was snowing, a lot....this only added to my depression because anyone who knows me well knows I hate snow! My feet were still swollen and all I could fit into was flip flops, so my feet were freezing to boot. We ran to a store and picked up some items I needed and then Eric had to go with Kierstin back home so he could work in the morning. So they dropped me back off at the RMH and I cried myself to sleep. Woke up early the next morning and went to see my precious boy till 10 pm....this is pretty much how the next 6 weeks went. Eric and Kierstin came back and forth and then Eric and I would switch off seeing Preston. A few times we had our friend Barb watch Kierstin and we got to go see him together and my mom came back for a week and a half and that was nice because we could be together with him.
As far as progress goes....that was slow and emotional and a roller coaster! Good day, then a set back, then more good, then two bad days. He was not showing progress like they had hoped and could not figure out what was wrong. I was beside myself....what could it possibly be now? So we just continued waiting, going through tests that took forever, trying to get them to figure it out. During that time, the premie baby next to Preston passed away. Eric was in the room when it happened. That was the first of 5 babies that I would hear of passing during our stay.
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