Thursday, June 27, 2013

Your love is my oxygen

Nikolai left the NICU with a team of doctors we had to constantly see to make sure he was fine. A geneticist, a pulmonologist, a cardiologist, audiologist, and his primary physician. The geneticist was the first doctor he saw, he evaluated Nikolai and showed us all the characteristics Nikolai had that show he has Down Syndrome. Like the gap between his eyes, him constantly sticking his tongue out, the way his toes are shaped, his flexibility, the long muscle in his abdomen that sticks out when he does crunches and his small ears. All the small things that I thought were just "Nikolai traits" were actually "down syndrome traits". It sort of broke my heart. But I soon learned that he does have his own traits that are just his that I love so much. The pulmonologist was next. He threw out different reasons why Nikolai still needs the oxygen. Either his chest muscles weren't strong enough yet, or his PDA had something to do with it. So we went to get X-rays done and see the cardiologist. Nikolai had a sonogram done, but the PDA was not the problem and the X-rays showed nothing new. We still didn't know why. I personally thought his small fragile chest wasn't strong enough to hold up the weight it had. 
When Nikolai took his first hearing test he failed but there was a fire alarm going off in the NICU i chalked it up to loud background noise. The second time he took it, he failed but the machine wasn't working properly so I told myself it wasn't his fault. Nathan was more worried than I was. I kept giving Nikolai the benefit of the doubt. So when we went to see the audiologist she did an extensive hearing test and found that his left ear had some fluid in it. We were suppose to go back in a couple months to see if it goes away on it's own. It was overwhelming going to doctors offices twice a week for the first couple months. He is my first so I don't exactly know what to expect. But I learned fast that with Nikolai it was gonna be a fast-paced kinda life. 
At home Nikolai sure had some fancy hardware. The oxygen company dropped off a machine that turns room air into pure oxygen, an apnea monitor, tanks, cannulas and hoses. When at home, he had to be connected to the oxygen machine and the 50 foot long hose to be able to be taken around the house. The apnea monitor had to be put on him while he slept incase he stopped breathing for any reason, and we would lug around an tank when we would go out in public. 
We would get the sad but curious faces and stares when we would take him out. We tried to keep him in as much as possible but we didn't seclude him from the world either and we definitely didn't keep him inside because of the looks. I never got offended by the stares, people were genuinely just curious. I'd get asked at stores or restaurants why he needed it. Even though the doctors couldn't figure it out, I would just explain that he has downs and his muscle tone was still weak so there was not enough oxygen getting into his blood system. 
I was terrified when the technician was explaining to use how to use the machines. I thought that "there is no way I can remember all of this, what if I forget something and Nikolai can't breathe." The reality of having my own baby hit me like a train. I was use to and comfortable having a team of nurses helping me in caring for my little one. Now we were going home. It was all up to Nathan and I. This is our first what if something goes wrong, we forget to do something or what if I don't do his oxygen right. I was having a little anxiety attack. But I got over it. If I forgot a small detail Nathan remembered it. After a couple days of Nikolai being home we had gotten his oxygen routine down. 
October 13 was the day he was taken off. Nikolai's stats were in the high 90's when he would go for a check up. The pulmonologist saw no need for it anymore. I remember I got the call when Nikolai and I were cuddling. The nurse told me that they had gotten the results of an over night pulse ox test we did a week before. We were able to take him off. At first I didn't understand what she meant. So confused I asked "Do you mean he doesn't need it at night or doesn't need it all?" "He doesn't need it at all." 
I cried so hard that day. My beautiful baby was one step closer to being a healthy normal child. He will have to go through so many hardships in his life and we had gotten through one. That same day were were giving the keys to our new apartment. It was as if we were all given a new start. It was perfect.

Wednesday, June 12, 2013

It Finally Came

The next couple days were very depressing. But on Wednesday the doctor gave us hope again. He told us that since the only thing keeping Nikolai in the NICU was the oxygen he was going to see if he could send us home with it. At first I was reluctant, I didn't want to get my hopes up again and have them shatter, once again. The nurses didn't help either. One of them told us that in the 15 years of her working in the hospital she never knew of doctor sending home an infant on oxygen. That we were just gonna have to wait it out. But sure enough by the end of the day the doctor told us it was going to happen. Nikolai was going home tomorrow. We just had to get a lesson on how to work/set up his oxygen tanks and apnea monitor. We had to get a rundown on how to add formula to his breastmilk to prevent his acid reflux, and we still had to have a "room in" night. 
I was beyond thrilled but I kept my feet on the ground and kept myself from floating to cloud nine. That night was beautiful, Nathan and I agreed that we would take turns with Nikolai's feedings but I would still wake up to pump before. It was about 10 when we decide to call it a night. The room we stayed in had a huge thick door that kept out all the loud beeping noises of the NICU and no windows that made it pitch black. Completely opposite of what Nikolai was use to sleeping through. He was comfortable with a constant beep or random beeps, alarms, other babies crying or people talking. He slept through commotion. So the silent scared him. Every hour or so he would wake up screaming Nathan would rush to him, comfort him and rock him to sleep again. Around his next feeding time I pumped gave it to Nathan and went back to bed. Nikolai didn't eat it all so like a cute new naive daddy Nathan dumps the rest. 20 minutes later Nikolai screams for more food but it is all gone. I wake up find out what's going on, instant anger. Poor Nathan had an exhausted, hungry, screaming baby and an exhausted, frustrated wife telling him to use his common daddy sense. Needless to say.....I was a really rough night. But we made it through. 
Three weeks after he was born on Thursday August 26 around 4:00 Nikolai stepped out of the hospital for the first time. I skipped down the hallways all the way to the car, I got the whole thing on camera. We are all going to watch that video years from now and look back and the whole experience and see it as a just a small bump on this long and gorgeous road.