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.

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.

Good Things Come To Those Who Wait

It was Monday! During rounds Nathan and I stood around like lost puppies waiting for the doctor to give Nikolai the green light to go home. The weekend went by fast and we were beyond ready to take our little precious home. Dr. Salem came in with a big smile and said today was the day. I jumped up and down making squealing noises and Nathan couldn't stop smiling. Of course there were somethings we had to take care of before he could leave. Nikolai had to do the famous NICU car seat test and have a "room in" night. The car seat test is simple and quick. He has to sit in his car seat for an hour without having oxygen being given to him and not have his stats go under 90. He passed with flying colors. It was the longest time he spent awake, he loved being in there and we loved seeing him smile and play. It was the most active we had ever seen him, of course before he would occasionally do incredibly adorable newborn stuff. Like remove his oxygen tube once a day because he didn't want it on his face or let out one loud yell to remind you he is there (he use to never cry). This hour was so beautiful, he looked so healthy and happy, He was a different baby than when he was in his crib. But that day was going to be long day and we had a lot to do before we could leave. It was feeding time, I fed Nikolai a bottle, went through our regular routine and he passed out in my arms. Well Nathan and I saw this as an opportunity to go back to our house to do some final touches. We left him with the nurse he had for the day. She was new to us, never seen her before but she was real sweet. Super excited we went home. 

We walk in the NICU, scrub in, video camera in hand and huge smiles on our faces. We go straight to his room and pick him up and start talking about all the fun stuff we're going to do when he gets home. Like watch mommy's Disney movies, cuddle, listen to all of daddy's vinyl, cuddle, walk around the park everyday and cuddle some more. The nurse comes in and tells us that while we were gone his stats went down into the 70's. She said she tried all the usual tricks to see if it would go back up but it wouldn't go higher than 85. So she decided to turn back on the oxygen.  

My world fell fast and hard. My face was blank, I stared at her with a dumbfounded look on my face. I had such an overwhelming rush of emotions but my mind couldn't react fast enough to show any, so I showed none. I closed my eyes and sorted through my feelings and what was happening. I was devastated, crushed, hopeless, impatient, asking God why. I was angry at the nurse, I had left my son with her for just a couple hours, how could she have let this happen. She didn't try hard enough. It was her first time with him! She didn't know his "tricks" she didn't know anything! Then all that anger I turned on myself. Why wasn't I there? He needed me and I wasn't there. It was not the nurses fault that she did not know the little twerks of Nikolai, but I did. I could have helped him. 

  

The nurse kept talking but it was muffled. I could tell by her face and body language tell that she was truly sorry that she had just shattered all of our hope and happiness. "I'm so sorry. I know you guys were looking forward to leaving today but Nikolai is still not ready. We just have to give him more time. And I know you're good parents and will give him everything he needs. I have seen you here everyday I have worked since your son was admitted. You guys have stayed loyally by his side for the past three weeks. A couple more days is nothing. Your strong together" I started to cry I couldn't hold it in. For the past three weeks I had not cried or teared up in front of anyone in that hospital, I wanted to be strong for Nikolai, to look strong. But I wasn't. I was weak. Nikolai was the source of all my strength yet he was the most fragile one in the room. She was right though. Nikolai deserved all the time in the world and we were going to give it to him. I was being selfish. I wanted him to go home, I wanted to hold him without any wires, I wanted to show his beauty to everyone I came in contact with. Me, me, me. The hospital was all he knew. He was in no rush to go home, he could care less about doing all the fun stuff we had told him about. Nikolai just wanted us, his mommy and daddy no matter where we all were. He needed a little more help, more time, all the wires and all the love we could give him.

Too Much Hope Is Not Always Good

It was July 16, my birthday. "This is the week" I kept repeating to myself. As if saying it would make it happen. The doctors and nurses told us everyday. "Soon enough, he is doing great. A lot better than expected." Their words would always give me hope. Maybe to much hope, I would cling to every word, every syllable. I was praying so hard that he would be home by my birthday. Our family would go out to eat or have a little get together and I could show of the most perfect thing God created, my son. But that Monday was just like every other Monday. I had woken up forgetting what day it was until the phone calls and text messages came flooding in. I didn't care, didn't want to talk to anybody, I wanted nothing but to cuddle with my little chunk-a-monk and not have a care in the world. Of course my loved ones would not let me. I was invited to have dinner with my family, then hang out with some friends. It would be our first night away from the hospital. When I left the hospital to go eat, I felt disgusted. A knot started to form in my stomach. How selfish am I? I'm leaving my son. He needs me with him and I am going out. I felt like a horrible mother. I know now that I was being hard on myself, I deserved a break but that day I was depressed and I definitely looked depressed. Nobody knew how to talk to me or what to say. So they didn't. 

The next night we stayed in the hospital. There are only two parent rooms for the whole NICU floor. The rule about who gets the room is simple: Which ever child has the most severe case, his or her parents would get the room. Well when we stayed home the night before an new couple stayed in our room, the other was being used as well. But when we came back and asked to stay in a room, it was given to us. This of course infuriated the mother. I over heard her arguing with the head nurse on my way to Nikolai's room. "This is outrageous and unfair. I've been here two weeks I always see them here, They have stayed in that room so long. it's not fair" I understood how she felt. I had felt it yesterday. In a way it was unfair, who wants to leave their child in the hospital. Then she said something that changed my opinion. "What is so wrong with her baby!?! Why does he get special rule. My baby is sick too. He doesn't need them like my son needs me. Why do they deserve to stay!?" I wanted to rip her throat out. 'WHAT WAS WRONG WITH MY BABY?!?!' But before I could open my mouth to speak the head nurse said everything I wanted to but with a calm, level head and some attitude in her voice. "It is none of your business what is going on with their son. It is my job to see who deserves the room. Their son is in a more serious condition than yours. Your son is leaving in a couple days. Their son isn't. You're right they are here all the time, even when they don't stay in the hospital, they are here on time for all of his feedings. Which is not what I can say for you. I'm sorry mam my decision is final." BOOM BABY! I felt proud that other people had seen how committed we are to Nikolai and appreciated it. That mother gave me the stink eye everyday after that until their son was discharged.  

Nathan and I would sit in Nikolai's room just staring at the monitor. Counting the times his oxygen level would dip below 90. When it did we would whisper little words of encouragement. "Come on buddy, bring it up, you can do it. Good job!" It seemed to happen right after he had a bottle and fell into a deep sleep. We all started to think he had acid re flux. So the nurses decided to elevated his bed and put rice cereal into his breast milk. Well technically it was the doctors orders but the nurses do all the hard work so i give them more credit. Hopefully this was the trick. These were the simple things that were going to let us go home. It seemed to work by Wednesday. His stats were beautiful. Nothing below 85, even after feeds and he was still breathing at room oxygen! Friday morning during the usual rounds the doctor informs me while I was feeding Nikolai that if all goes well during the weekend Nikolai should be going home on Monday! I get so excited I tear up, but he keeps repeating 'if all goes well this weekend'. I rush into the room to tell Nathan the good news. He wakes up instantly and tells me to repeat everything the doctor said. I guess he didn't believe me because he ran out to the hall to ask the doctor himself. The doctor told us again but just like the doctor Nathan made sure I understood that it was a possibility not a sure thing. 

Bittersweet

A week goes by, the small hospital room has become our home. We would only leave for an hour to go to our real house to eat a fast meal, grab clean clothes then we'd rush back to the hospital again. We knew all the the hospitals hidden tricks. How the vending machine on the maternity floor didn't work, not to use the elevator on the right because it has a history of shutting down, all the good parking spots open up after 7 p.m, when getting ice place the cup over the hole or else ice gets everywhere and the secret button on the door of the emergency room that opened it without having to wait for someone to let you in. The people in the cafeteria knew our faces and our orders by heart, all the food in the NICU parents lounge had "The Hills" written on it, and the waiting room was our living room. 

At first we were strong, thinking "we could do this, Nikolai was off antibiotics, his feeding tube was removed, he didn't have thyroid problems, his bilirubin count was good so he wasn't jaundice. According to his cardiologist his PDA will close up by itself and it was nothing to be concerned about. He was gaining weight, sleeping good and was responsive. The only thing keeping us here is the oxygen. The doctors couldn't pin-point why his O2 levels were so low. But that shouldn't take to long. Nikolai is strong, a fighter, we will be out of here in no time" 

Then it became harder to be so positive. My 20th birthday was in a couple days, my birthday wish was that I could take my baby home and have the ultimate present. But then I had to come to grips that it would most likely not happen. I'd have to wait, spend my birthday in the windowless, stale air, plain cream walls of the hospital. The only thing that made me feel better were those beautiful blue eyes. But then I'd start tearing up. Every time I held my precious little mini me, I had to position the cords just right so that they didn't get a false reading. He was a week old and still hadn't seen the sun. His little lungs hadn't breathed in fresh outside air. His life was the hospital. One day Nathan and I went to Target to get some things. We walk in the front door and see a couple with their newborn in a car seat. The baby couldn't have been more than a couple weeks old. I instantly broke into tears, Nathan put his head down, clenched his fist, and tears filled his eyes. He blinked repeatedly to make them disappear and walked away quickly while my mother in-law hugged me. I hated that family with a passion. They were able to 'show off' their newborn, flaunt the little being they had made together, show the world his cuteness. I hated them. My baby was almost two weeks old and hadn't left the hospital, not once. Why did they deserve to be so carefree and happy? Why did that baby deserve to be born "healthy"? Why did my little Nikolai deserve to start his life like this? Jealously took over me.

Our spirits started to slowly fall. We never lost faith in Nikolai, we just stopped having the mindset that tomorrow will be the day he could go home. There would be days we wouldn't talk because we didn't know what to say anymore. It is hard to comfort someone when you are in just as much pain. I would sob in the bathroom for hours, Nathan would sit in Nikolai's room and draw him pictures to hung up around the room. But when we were all in the same room together, it was as if we were at home. Carefree and happy. Nikolai was the light at the end of our dark tunnel. Looking at his wrinkled little face reminded us of hope. He IS strong, we CAN do this, he WILL go home, he just needed us to be patient. He has always done things on his time. Even in the womb, I guess he was preparing us even then. 

Always By His Side

Sunday came and I was going to be released from the maternity ward. I had not thought of checking out until the social worker told me that I could ask the NICU if I could use one of the parent rooms to stay in and if not they would let me stay another night in the one I was already in. I had forgotten that it was a privilege to stay in the hospital longer, it was already set in my mind that I wasn't leaving without Nikolai. I was extremely great full that the hospital even had a room for parents to stay in while their child was in the NICU. The thought of leaving my baby by himself for a night broke my heart and gave me a horrible feeling in my stomach. So we packed up our things and moved in a room across the hall from Nikolai. It was nothing special just a bed, a recliner, a bathroom and a vital monitor for when the baby stays in the room with you. We weren't in the room that much anyways, we spent most of our time in his room.

Nathan and I were at every one of his feedings, every three hours, day and night. Which became exhausting.  Not to mention that I was pumping every 3 hours (including at night) so I didn't sleep much. So after a couple days, we decided to split the schedule into two shifts. I got the mornings, from 7 a.m. to 4 p.m, we would both be there for Nikolai's 7 p.m. feeding and then Nathan got 10 p.m. to 4 a.m. Like clock work, we were there 15 minutes before feedings to change his diaper and cuddle just before it was time to eat. The nurses would always joke about how it wasn't fair that we always got to feed him, we never gave them a chance to spend time. 

All the nurses adored Nikolai, multiple ladies would randomly drop in and say hi to him and "oogle" over how adorable he was. Nikolai was the Ladies Man. "He is so precious, and sweet." "He makes my day every time I see him" "He is such a good baby, he never cries, but if he feels forgotten he'll let out a yell to remind you he is there" And of course he had a favorite nurse who was perfect with him. We felt comfortable with all the nurses who watched him but when she was working we knew he was being well taken care of.The nights that she worked, we would let her have a feeding once a night. 

We were constantly told what good parents we were. That we were the youngest parents in the NICU but were more "committed" than most. I never understood what they meant. How could you not be committed to your child? I understand that having a job would  prevent you from being with your baby all the time but when you have free time why wouldn't you want to be by their side? I am glad that Nathan and I didn't have jobs at the time and could be there all hours of the day. Nikolai IS my life, it revolves around him and I wouldn't have it any other way. As a mother it is my job to nurture my child, comfort him, put his well being before my own and love him unconditionally. I can't fathom how a mother would not feel that way. 

The Up Hill Battle Begins

I have been subconsciously putting off writing about our NICU experience because it was the hardest time in my life it is difficult to think about. But here it goes...

We were escorted to the NICU when we woke up, a nurse taught us how to wash our hands with  surgical sponges and explained why we had to do it every time we came into the unit. Still in my hospital gown I was pushed in my wheelchair to Nikolai's room. It was a relatively small room with no door, separated from the other rooms by a half wall and glass windows. My eyes quickly scanned the room, there was a sink, a curtain, a recliner, a monitor that showed his vitals and a radiant warmer. I was pushed in front of the warmer, and there he was. Wrapped in a hospital blanket with his left arm by his beautiful face. My heart fell, I started to cry. They had put an I.V. in his left hand that administered antibiotics, and in the NICU they put a protective cast over it so it doesn't get taken out on accident. He had wires coming out of the blanket that were connected to his chest to monitor his heartbeats and a cannula in his nose for oxygen. The nurse asked if I wanted to hold him. I sat down in the recliner and she handed him to me. Nikolai looked so precious like a fragile porcelain doll. The nurse explained to us that as far as they knew he had no infections, the antibiotics were routine for any baby that goes in the NICU, his heart rate was good but the oxygen level in his blood was extremely low which caused him to turn blue in the nursery. But since the cannula had been placed, his stats had gone up. The whole time she was talking it was muffled in my ears. I was lost in Nikolai's face. I didn't want to give anyone or anything else my attention, he deserves it all. Nathan later explained in detail everything she had said. We stayed there for a couple hours but we went back to the room to call and explain what had happened to all the friends and family that wanted to see Nikolai. Our close family still came and either Nathan or I took them to go visit him. I kept hearing "It'll be ok" "I'm sorry" "you'll be fine' "you can get through this" so many times it started to bother me. I understood that in tough situations others don't know how to react and they try saying comforting things.But I already knew it was going to be ok, there was no need to be sorry for us, we had no other choice but to get through it. I just happened to have a baby boy who needed a little more care than others and more time to get stronger. Nikolai may have not been as physically strong but his spirit was the strongest I have ever seen. I could see it in his eyes. He is on a mission. In the first day of his life he had already started teaching us some of the most important things in life, patience and hope.

Nikolai was put on a feeding schedule, every three hours he would eat and Nathan and I made sure we were there for every one. The next day he was taken out of the warmer and was able to sleep in a crib.