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.

He is my Reason

I started having contractions on the 4th of July but did not know they were real. Not having experienced any fake or real contractions I just assumed it was the infamous Braxton hicks ones everyone told me about. I was wrong. I had small pains all day that would stop me in my tracks but I just brushed them off. I had two more weeks til my due date and with how stubborn my chunkamonk is, I figured if anything he would be a couple days late. I celebrated fourth of July with my in-laws and went home to pack for our trip to Scottsdale. We planned on leaving first thing in the morning, why we thought it was ok to travel while I was 38 weeks is beyond me. I finished packing around midnight and crawled into bed. Around 2:30 a.m. I woke up in pain, but I was tired and try to push through it. The pain kept growing by the minute, I started to cry it hurt so much. I got up and started timing the contractions. I didn't care that my husband was asleep next to me, I turned on the light, searched for a pad of paper, a pen and an informational book I had received about timing contractions. In tears I time them, they averaged about 5 minutes and 37 seconds apart. My husband half asleep turns to me and asks "why is the light on?" Stuttering I answer "I think the baby is coming...." I start crying harder, saying it out loud made reality set in, in a way the pain could not. He mutters "uh..ok." and goes back to sleep. Furious, I start making more noise on purpose. Still half asleep but more awake than before "Babe what's the matter? Why are you crying?" "I think I'm having the baby can you go get your mom." In half a second he is completely awake and running down the hall. I had been timing my contractions for an hour before Nathan woke up and when his mother came in the room, we watched the clock for another hour. The most painful hours of my life. Walking from my room to the car, I had to stop every few steps for the pain to calm down. And like every woman who has experienced labor, the car ride to the hospital is horrible. I get admitted at 5:00 and the waiting game begins.

 In my birth plan I had made up my mind that I did not want an epidural. I wanted to experience it all and be able to brag later about how I survived the excruciating pain of child birth. Again I was so wrong. I was 5 centimeters dilated when I started asking for the drugs. I am still proud of myself for making it half way before 'giving up' . I knew I couldn't handle the pain anymore when I started being really mean to those around me who were just trying to help. I made a remark about how cold I was, so like a nice husband, Nathan gets a blanket to cover me up and I snap at him not to touch me. After a couple more hours and a few more mean remarks the anesthesiologist comes in to give me the epidural. As soon as my legs get tingle-y I am a happy, bubbly, slow reacting person who is floating on cloud 9. According to the clock I had been in labor for 9 hours before the real fun began...the pushing. Two hours later they lay a purple, grey little boy still covered in gunk on my chest. My heart died and went to heaven in that exact moment. The nurse took him away just as fast as she put him there. My husband and I stared into each others eyes worried, thinking the same thing but not saying a word. Why has he not taken a breath yet? Why is he not crying? The worst thought ran through my mind, but was interrupted by a beautiful baby scream.

Nathan and I showed him off for hours to family and friends then we were taken to our new room. It was 10:00 p.m. and we showed no signs of going to bed. We just stared in amazement at the beautiful angel that laid in my arms. We had forgotten he had down syndrome until one of my family members pointed out earlier that Nikolai had little, to no characteristics of a DS baby. Even after that was said we forgot again. We weren't looking for things "wrong with him" he was absolutely perfect in every way imaginable. I didn't see characteristics because I was't looking for them but when I did, I found them. His eyes were the only thing that resembled a downs baby. But I personally don't care what shape his eyes are, it is what is behind them that I fell in love with. The way he would look at me, knowing that I was his mommy, that I was the voice he had been hearing for months and watching him make the connection blew me away. I knew then that I will do whatever I need to for him, I will protect him from the harshness of the world, be a strong advocate, help him get all the resources available and help him grow to be an amazing man. I want what is best for my baby, I will fight for the best and he will have it because he deserves it. 

Around 2 a.m. Nathan and I decide to take him to the nursery so we can get some sleep. The next morning a man with a thick Indian accent comes into our room and starts talking while I'm still trying to wake up. "Good morning I am Dr. Salem. Your son is currently in the NICU and is getting evaluated. Apparently he turned blue in the nursery so we put him on oxygen and his color has gotten better. We are admitting him in the NICU to keep a close eye on him for the next couple of days. You can come down and see him in a couple of hours, you've had a long night, for now get some rest, he is in good hands." I bet your wondering how i remembered pretty much everything he said. Well when some one tells you your baby couldn't breathe and is in intensive care you cling to every word. 

After Knowing

After finding out Nikolai had Trisomy 21, I had to go to the specialist twice a week to get a Non-stress test performed. It is a 30 minute test that involves two transducers that monitor Nikolai's heart beat and my uterine contractions (if I was having any). For those mothers out there, Its pretty much the same machine they use to measure your contractions during labor. The nurse explained that the machine will find a baseline of his heart rate and every time he moves or kicks that his heart rate should increase causing the line to spike. If it was a good acceleration it should reach 15 bpm (beats per minute) but 10 is average and acceptable. So the goal was that Nikolai would move more than two times in 30 minutes or I would have to stay longer until he did. But he likes showing off so every acceleration was 15 bpm. He would just do it on his time. It was annoying having to go so often but when i got in the office for my weekly sonogram i was nothing but happy. I was lucky, how many mothers get to see her baby and listen to his heart beat for an hour every week. Usually we would go on Tuesdays and Thursdays but one week we switched it up to Monday and Friday. Since we went so often I got the same nurses every time who knew how stubborn Nikolai is and the tricks to pull if he wouldn't cooperate. So when we changed the days this meant a new nurse for Nikolai to torture.  (Side note, When I say he was stubborn he really is. It would take no less than an hour when we got sonograms for a decent picture. We didn't get a photo of his face until I was about 8 months pregnant. When we were in Las Vegas my aunt paid for us to get a "memory sono" where they recorded the session and we received a DVD and photos. After an hour of awkward positions, jumping around and an aggravated technician we finally got a decent picture of his face.) So back to the main story.... 

The new nurse had trouble finding a good reading of his heart but found it with a little bit of help. I begin reading a magazine and got so wrapped up in the article that I didn't realize it had been 15 minutes without any kicking or rolling over, until the nurse approached me. "Someone's being stubborn today" she says "No he is always like this, he does what he wants when he wants." She goes into the drawer next to me and pulls out a small grey flashlight looking tool. It is used on bellies with non moving babies. The vibrations and loud buzzing noise usually surprises the baby enough to move. She places the tool on the top of my tummy and at the exact same moment Nikolai kicks me so hard in the same spot that the nurse jumps back scared. "Oh my gosh, I'm so sorry!" The other mothers there start laughing with me. "I told you he does what he wants."  

How fast life can change

October was the month it all started. I had been having pregnancy scares a couple months earlier and each time I would get anxious before i took a pregnancy test. But my husband and I would get a little disappointed when the results showed the negative sign. The one time I didn't have a doubt in my mind that I was not pregnant, the test showed a small pink positive sign. Still on the toilet I began to cry my eyes out. All the reasons why I shouldn't or couldn't have a baby flooded my head." I haven't gone to college yet, we are living in my in-laws garage, I had just turned 19, we aren't financially stable, we cannot afford this baby." Still crying, I told my husband the news, he was instantly overjoyed and change my outlook on the situation. I began to love the little human inside of me. 

When I was about 21 weeks we went in to see if my little sea monkey was a boy or girl. The day of the ultrasound there was non-stop commotion in my tummy. The baby was kicking, doing flips, pushing my organs around to make more room. I felt sorry for the technician, who was new at the time, she couldn't do her full evaluation on him because he was moving so much. She had to bring in another tech and even she was having a hard time. It was all fun and giggles from everyone in the room except the technicians. After 45 minutes of them trying to do a check up their facial expressions began to get worried some. They said nothing as one stepped out and the other helped me wipe off all the gooey ultrasound gunk off my belly. As soon as my family and I were going to leave she stops me and says "It was difficult for us to see your baby and the head of the department has some concerns he would like to speak to you about." A couple minutes later a small frumpy old man comes in the room and in a monotone says "We saw that you have a single umbilical artery, which means your umbilical cord has only one artery and one vein instead of two arteries. we also found some complications with your baby and would recommend you see a specialist." Just like that, no explanation, no comfort, just a plain stare and then leaves the room.

My world crumbled, I didn't understand the umbilical cord situation, was it the reason my Nikolai had "complications" was I going to loose my baby boy? what were the complications? were they life threatening? I had so many questions that I couldn't get answered for another two weeks. I finally got to see a specialist who asked me why I was there I told her I honestly didn't know. She then told me that the ultrasound technician found that i had a single artery umbilical cord, my sons arms and legs were shorter than the norm, his kidneys had excess fluid, he had a spot on his heart and he had a thick nuchal fold (the space under the skin at the back of the neck). I was shocked and furious by how much the head of the ultrasound department didn't tell us. The specialist, whose name I wish I could remember, was such a sweet lady, she explained that the umbilical cord had nothing to do with with the "complications" Nikolai had and most of the time the babies with a two vessel cord were born perfectly fine. Together we ruled out the previous complications except the spot on the heart and the skin on the neck. Nikolai was healthy she explained the small hole in his heart is not causing any problems and will most likely close up once he is born it was just considered a marker for Down Syndrome. So was the thick nuchal fold, average babies will have a 4 mm nuchal fold and Nikolai's was 9.4 mm. 

After we were done my husband and I saw the Genetic counselor. She explained Trisomy 21 and other forms of Down syndrome in a scientific form and in plain English. We were given the opportunity to get an amniocentesis, we accepted. She then asked in a low hushed voice, with her head lowered and her eyes looking at us like she just ran over our dog, "if the test comes back positive...would you like to terminate the pregnancy?" Confused at first i answered. 'Terminate? What? Why? He is my baby, I've grown attached to him in the last 5 months, no way." The room lit up as if a dark cloud had been blown away, everyone had a smile on again. 

A couple days later I was watching a show that had a girl with Down Syndrome as one of the actors, I instantly started crying. I wasn't devastated that my son was going to look like her or he was not going to be 'normal'. I just realized that a test could not determine who my baby is. He is still going to be beautiful, lovable, amazing and perfect in every way because he is MY son. No syndrome, disability or abnormality is going to make me love him any less. I then decided I didn't want to know the results to the amnio. I called my husband at work, told him to tell the specialist to call his phone with the results and not to tell me anything, i don't want to know. Later on in the week my husband asks me if I was sure I didn't want to know the results. I look at him and can see sadness in his face. He then says, " I know you don't want to know and we made a deal that I wouldn't say anything but I really need you right now. I can't do this by myself." I knew that meant the test was positive. Nikolai had Trisomy 21. The biggest smile took over my face, I felt over powering joy, and a couple giggles came through my huge smile. The news brought me closer to my little boy, i was excited that I knew something special about my baby before he was born. We had a heart felt discussion and knew we could handle this. God gives you what he knows you can handle.