Ryan's Adventure: WEEK 2

DAY 8: Monday, August 30th, 2010

Happy first week, baby Ryan. I couldn't believe it had been a whole week since Ryan's birth. Brenton commented to me that it didn't feel like a week, but one very, VERY, long day. He got permission to work from home that day so that he could take care of me until my mother arrived from the airport. With his help, I managed to get a shower and get dressed. While I had plenty of great maternity clothes during my pregnancy, I realized this week I have almost nothing that works for nursing. I don't know when I'm going to be able to buy nursing clothes. Hopefully I find some good things online.

I called the NICU to see how Ryan was doing, and then waited for my mama. When she arrived I wrapped my arms around her and just cried. There are certain experiences in life when you simply need your mom, and nothing else will do. Having a baby is one of those times. Suddenly I knew everything was going to be all right, because Mama was here. She brought me several pretty nightgowns with button-down fronts so I'd be able to nurse in them. That was such a smart idea. If I was wearing a nightgown, it would help remind me that I need to rest, not clean the house, do the dishes, or try and attempt the stairs too often.

Soon after Mama arrived, we left for the NICU. I can't tell you how wonderful it was just to have my mother there as an added strength. I knew that with her at my side, we were going to get Ryan home, and soon. Ryan was making amazing progress. When he was first admitted to the NICU, he was on high-flow oxygen at 10 liters. On Sunday, he was down to 3, and when we saw him that morning he was down to 2. I knew I had a healthy baby who didn't need to be there anymore, and so it was frustrating when I'd talk about having him discharged and everyone would come up with lame excuses as to why he should stay. "Well, he still needs to be monitored." "Who knows what might happen!." What they were really saying was, "Well, we don't want you to sue us later on." "Who knows when we'll lose our funding, so we're going to keep him a few more days and milk your insurance for all it's worth."

It was a very tender moment to watch Grandma meet baby Ryan for the first time. She already has two sweet granddaughters, but this was her first grandson, not to mention he's absolutely adorable. She watched him hold his head up as I fed him, and talked to him. She looked at me and said, "Katie, that is not a brain damaged baby." She was right. He was doing things that are actually ahead of schedule for a normal baby. We knew Ryan was fine, and now it was just the long battle with the doctors to get him discharged. He had nothing left medically to do, it was all the legal junk he had to pass. Now if you think all that legal mumbo-jumbo is necessary, just you wait. You won't believe some of the stuff they had Ryan, Brenton and I do just to get him home.

Mama and I stayed for Ryan's next feeding, and then headed back home to tell Daddy how well Ryan looked. I was surprised when we saw Ryan in the NICU that he wasn't in his usual bed, but in one of the clear, bucket/cart beds that normal babies are in. I figured it was because he was scheduled for an MRI that day and they needed a way to transport him there. Much to our delight, while sitting with Mom and Brenton at dinner we got a call from the hospital saying that Ryan had been moved to the Special Care Nursery. He had graduated! Finally, a real step in the right direction from the hospital. After hearing all their negative feedback, the fact of the matter was that Ryan was progressing, and they needed the space in the NICU, making him no longer their concern. We knew his next step was coming home. I began to cry as I realized there really was light at the end of the tunnel.

That evening, although exhausted beyond measure, Brenton and I went to the hospital for Ryan's 7:00 and 10:00 feedings. I was so worn out, but I knew I had to show the doctors that I could handle Ryan being home. The Special Care Nursery was a very crowded little room, with beds set up in every cranny hooked up with wires and monitors everywhere. It was also severely understaffed. At first Brenton and I were horrified that this was where our baby had been moved. We wanted to snatch him up and run. We realized though that this was in our favor. The nurses were so busy that they'd want to get as many babies out as they could. So Ryan didn't have that much longer to go before we could bust him out of that place.

Rocking Ryan in the Special Care Nursery

DAY 9: Tuesday, August 31st, 2010

Mama came over first thing in the morning, as Brenton had to go back into work. She helped me with everything, and made me breakfast. It was comforting to know that while the hospital had seemed to forget that I was still recovering from massive surgery, my mom sure hadn't. She pampered me in every way that she could.

We arrived at the hospital at 10:30 to feed Ryan. He was down to 1 liter of oxygen, and only on fluids and sugar water. I made sure Grandma got some snuggle time in during that visit. Ryan nestled right into her chest and made himself comfortable. We talked and sang to the little sweetheart, and met with the nurses to fight the legal battles yet again. I was soooooo worn out. I wasn't getting sleep at night because there was no way to lie down without one or both of my incisions burning. In addition my mind was so overwhelmed with everything that I could never settle it down enough to rest properly. After feeding Ryan, my mom took me back to her hotel to rest a bit.

I was planning on resting until 7:30 when I'd go back to the hospital, but we got a call saying we needed to be back by 1:30 to meet with the doctor. It was amazing to me how none of the doctors seemed to care that I was in worse shape than my own baby. Traveling back and forth from the hospital was spreading me very thin, but because I was discharged, no one at the hospital seemed to care about my health anymore.

Back at the hospital I sat down with the nurse practitioner and spoke to her about Ryan and getting him home. He would be weaned off the oxygen by morning the next day, and had to stay off it for 24 hours. That was all that was left. So I said, "after that he can come home then." And of course, she responded with, "well after that we'll re-evaluate, etc..." Ugh! I wanted to scream, "Cut the crap and give me my baby!!"

After that visit Mama took me back to the hotel to eat dinner with Brenton. The hospital called again and said one of the requirements to get Ryan released was for Brenton and I to camp out at the hospital all night to prove we would feed Ryan and take care of him when he's home. So instead of resting, we headed yet again back to the hospital. I was so exhausted at this point. I'm exhausted just typing this all out. What a stupid requirement. Of course we're going to take care of our baby when he's home. But here's where it got really stupid. When we got there, we told the nurses that whenever Ryan was ready to eat, to call us so we could feed him and meet the requirement. They informed us that we only had to feed him when we wanted to, and if we were too tired they'd do it. So the requirement was just to camp out at the hospital, not prove we can feed our baby. How backwards is that?

DAY 10: Wednesday, September 1st, 2010

After camping out all night, Brenton dropped me off at my mom's hotel on his way to work, and she helped me get a shower and ready for the next very long day. I was so drained I could hardly think straight. However, instead of the exhaustion making me weepy and defeated, it made me angry and full of "mother bear" defenses. I was ready to do whatever I had to do, stand up to whatever doctors I had to in order to bring my perfectly healthy baby home.

Mama and I camped out at the hospital all day to complete more stupid requirements for Ryan to come home. At 10:30 I went to feed Ryan, and we got them to take his oxygen completely off. Of course, Ryan did just fine. He was fine three days earlier. The rest of the day was spent in feeding him, and trying to get some rest myself.

That night Brenton came to the hospital after work for our final camp out. Ryan had to be off the oxygen for 24 hours, and then there was nothing left to keep him there except for a bunch of stupid requirements which Brenton and I would complete that evening. First there were movies that he and I had to watch. Then, we needed to have "discharge training." Finally, the stupidest test of them all: the carseat test. Now, granted, I can understand that they would want to make sure we had a decent carseat to take Ryan home in, and would want to inspect that. Fine. So we bring it into the nursery for inspection, where they inform us that Ryan had to be strapped into it and monitored for 90 minutes. WHAT?!?! I'm dead serious. That was a requirement to get him released the next day. I was so sick of all the junk they were making us do, that I realized to fight them on it would just be banging my fists against a mountain, so they strapped our baby boy into his carseat, base and all, and had him sit in it for 90 minutes. Good grief!

However, Brenton and I were stubborn enough that by 2 in the morning, with Ryan now 15 hours off the oxygen, we were able to bring our baby into our hospital room with us. They had dragged their feet long enough. Ryan was like any other baby now, and he belonged with us. Brenton set up our camera on a shelf, and we took a picture of our family all in the hospital room, something I had envisioned happening a week earlier, but nonetheless was now happening.

DAY 11: Thursday, September 2nd, 2010

This time Brenton left for work from the hospital, and I stayed there. I was not going to leave that building without my baby, and no way on earth was any doctor going to come up with any more stupid reasons as to why my baby couldn't go home with me that day. I was so done with all their "covering our own backs" stuff, that I was going to do whatever it took to put my foot down and take my baby home. When my mom arrived, I tried to get some sleep until it was time to meet with the doctors. She held Ryan as we waited for the final discharge to take place.

Finally, now that the staff had nothing else to force at me to keep Ryan from coming home, suddenly everyone was all positive. Instead of " We'll keep our fingers crossed!" it was, "when he goes home today be sure to..." They were out of excuses, so all of a sudden Ryan was normal and the staff wondered why he was still here.

We had to wait for the doctor to do a final exam on our little guy, but finally around 2:00 a nurse came in to wheel him down to the NICU to be assessed. I marched right down with him. I was not going to let some doctor make up some excuse as to why my perfectly healthy baby could not go home that day. I was happy to see that even the doctor didn't care about Ryan anymore. All his monitors were taken off before the exam even took place. I knew that meant that in everyone's eyes he was done, and it was time to go home. Ryan passed with flying colors, of course, and we got the green light to pack up all our things.

Brenton raced from work over to the hospital, and I dressed Ryan in the coming home outfit I had envisioned him wearing a week ago. Tears filled my eyes as I knew that finally, our baby was free. He was coming home with us. We strapped him into his carrier and headed out the door. I realized as we stepped outside that this was the first time Ryan had seen daylight, and breathed fresh, outdoor air. We took a picture, place our baby in the car, and drove home. Finally, we had made it.

Now our little son is home, and while I still have a long recovery ahead of me, I'm not going to report everything on a day-to-day basis anymore. The long nightmare is over, and while we're still working out a few adjustments, such as getting him to nurse again because he's used to bottles now, we're working through them. The most important thing is that both Ryan and I are alive, he's a perfectly healthy, baby boy with no lasting side effects, and no more wires or tubes. He keeps us up from 12-4 AM every night just like any other healthy baby. Most importantly, he is so full of life, and when he looks up at me with that perfect little face my heart is overwhelmed with gratitude for the life of my little boy. We are a family, and will be forever. He is our little guy, and he's finally come home.