Sunday, February 17, 2013

Birth Story Part 2

I spent two hours in recovery before I got to see my little man. Since my legs didn't want to cooperate for a while (spinal and an epidural) I was wheeled away on my bed. When I arrived to the NICU and saw Camden on the bed warmer I was instantly smitten. Here was this tiny human being breathing on his own and adapting to this outside world. He was beautiful! He needed no ventilation, cpap, or even a nasal cannula. He was a fighter! He was a Hill! The neonatologist explained what would happen over the course of the next few weeks and all in all said he was doing great. He had a feeding tube down his throat to help him eat and some IV fluids going. I could definitely deal with that! Then before he walked away he said, "I sent some genetic tests off due to his dysmorphic facial features." Huh? Come again? Looking at his tiny face, all I saw was perfection. "What do you mean?" I asked. He proceeded to talk to me about his eyes and his nose...flat nasal bridge...epicanthal folds. I still wasn't comprehending it. Maybe it was because of the drugs, or maybe looking back I just didn't want to listen. After he walks away I ask the nurse what on earth he was talking about. "They are testing for Down Syndrome" she says. My mind is in a foggy haze and I still don't understand. All I know is that I want to hold my precious baby boy and tell him that his mommy loves him and that everything is going to be okay. Looking back on those moments, I realize that that was probably an unsuitable way to tell someone that their newborn baby has Down Syndrome. Don't misunderstand, I absolutely love my NICU team. They were lifesavers during the most difficult time of my life. However, I will give a little bit of advice. I think it would be better to say something like "You're baby is doing great. He is perfect. There are some features that make me suspect Down Syndrome and I would like to send some testing off." Telling me that my baby has dysmorphic facial features makes it seem like he is some odd little human with a misshapen face. I am a nurse, so I know what dysmorphism means. At that moment I was a mom, not a nurse. I didn't understand what anything meant. Then to not further explain and just walk away is bad bedside manner. How do you leave a mom with a statement like that? Somehow everything that just transpired was quickly put out of my mind when I was asked if I wanted to hold my boy. As I held him and felt his soft skin against my chest, the world disappeared. There was only that moment. The moment between a mom and her newborn child. The unconditional love that binds you for eternity. He was perfect.

"For this boy I prayed, and the Lord has given me
my petition which I asked of Him." - 1 Samuel 1:27


After spending some time with Camden, I was then wheeled off to postpartum. There my husband and mom were waiting for me and I was exhausted, emotionally and physically. Richard was not with me when I was told about the testing for DS so I was the lucky one to break that news to him. He basically had the same reaction as me and didn't understand. He began to worry and I told him that it was going to be okay and that they were probably wrong. I actually had put it out of my mind and tried to forget about it. We were told it would take a week for the results and I just didn't want to think about it. The rest of that day was a blur. I was feeling pretty sick and was given some Phenergan and I slept the day away. Richard took my mom down to go see Camden while I napped. When they returned my husband seemed relieved and told me that he wasn't worried about DS. Apparently when my mom entered the NICU some of the nurses said "Oh, that explains it". You see, my mom is Korean. I am half Korean which makes Camden a quarter. They were telling my husband and mom that they did not know that Camden was part Asian. Now the upward slant to the eyes and flat nasal bridge make a little more sense. My mom would later tell me that all Asian babies look like that when they are born. What a relief! The rational side of me knew that Camden was only 1/4 Korean so his features would not be that prominent. Then again maybe they would? I think in the back of my mind I already knew. My mom and husband would continue to believe that he did not have DS. I on the other hand would spend the next several days studying my baby from head to toe. I would look at his eyes, his nose, and his ears. It was inconclusive. I would study his palms looking for a palmar crease...he didn't have one. I looked at his feet trying to determine if he had a sandal gap (a big space between the large and second toe). Hmmmm, maybe but that can be "normal" in typical babies. I asked my step mom (who is a Pediatric Nurse Practitioner) what she thought when she came to see him. She showed me reasons why he might, and reasons why he may not. I could always see in her eyes though that she believed he did. This would continue day after day until the test results came back. Camden's feeds were increased daily and eventually the IV fluids would be discontinued. His bilirubin was a bit high, which is not uncommon for preemie or full term babies, so he would spend time on the bili light blanket. He was my little blue glow worm.



It is now Monday December 3rd, exactly one week since Camden was brought into this world and one week since the tests for DS were sent off. I knew the results would be back soon, but honestly I really didn't think about it because we had all decided he didn't have DS. I was at the hospital for his 9:00am touch time and he was having an echo cardiogram done. They had ordered one due to a heart murmur that was still present. I was not worried about this because I knew it was probably not a big deal. I figured it was a PDA that had not closed yet. Hah, little did I know at the time! I remember putting Camden back in his isolette  to get ready to leave. I hear one of the nurses call down to the lab asking if his test results were back yet. I decide to hold him a little bit longer so I could wait for the results and be done with this whole mess. What happens next will be forever engraved in my mind. I am shedding tears because I feel so sorry for that woman who is about to hear the news that will forever change her life. The news that would bring insurmountable pain for weeks to come. I will always remember Dr. Foster walking over to me and saying "Mom, he does have it, I'm so sorry". I can't hold back the tears. They come pouring out like a flood. I can't describe the pain that I feel. It feels as if someone has punched me as hard as the could in the gut. I don't know what to say or do. She rubs my back in an effort to try and console me. I look at this little boy and he no longer feels like he is mine. I feel like my baby is gone. My perfect baby boy that grew inside me for all those months is gone. He has been replaced with this baby that I am holding. I don't know what to do except kiss my son and put him back in the isolette. I feel bad for the nurses that are there that day because you can tell they don't know what to say. I walk out of the NICU wiping my eyes and meet my step mom outside to go back to their house. I tell her the news. I am inconsolable and she starts to tear up. I call my husband on the ride home and tell him the news. His response was "You're kidding me". Nope, definitely not joking here. I don't even know what was said next. When I get back to my dad's house I just want to lock myself in a dark room and cry. It's hard to keep it together when you have a three year old boy that needs you. I tried my best to put on a happy face so I could take care of my son. When Carter would nap, I would cry. I have never cried so hard or so much in my entire lifetime. I was grieving the loss of my son. There was this empty hole inside me and it hurt...oh it hurt so bad. I felt guilty for wanting another baby. I worried my husband wouldn't love Camden the way he loves Carter. What if he never accepts him? Would he hate me for doing this to our family? What about Carter? I wanted so badly for him to have a sibling to grow up with. Now what have I done? I let him down. He now has a special needs brother that he will resent for the rest of his life. What I am I going to do? I can't do this! I can't raise a special needs child! Why me? My life is over. I am heartbroken beyond repair. Will I love this baby? Will we have that bond that only a mother and her child knows? Next comes the worst thoughts of all. I don't want this baby. I want to go back and be pregnant when life was good. I want my perfect baby back. I want it to be over. I just want to go back to my life with Carter and Richard and pretend this never happened.
These are thoughts that I have not shared with anyone until recently...not even my husband. I am ashamed of myself. How could a mother think or feel that way about her own son? I can't take it back...all I can do is move forward. It was a difficult time and was even harder because my husband was not with me. He took it hard too. I would never know how much because this is something he has never talked about. I think we had to process through our thoughts and emotions on our own. I remember talking to him that evening we found out and he was angry. He was angry at everyone and everything. We didn't talk much after that until the next day. Day after day I would continue to go to the hospital to see my boy. The motherly instincts were always there. I wanted and needed to go see him and take care of him. Then I would get back home and the darkness and pain would once again take over. Tears continued pouring out, my insides writhing, and sleepless nights. I became obsessed with the Internet trying to find all the information I could about DS. Most of the time it was just depressing. Countless medical conditions and learning disabilities. It was all the same. Then I remember seeing a link to a birth story on a blog by Kelle Hampton. I started to feel somewhat better just knowing that others have been there. I started to feel better because those that have been there seemed to be doing okay. In fact, they seemed to be doing great! I continued to read blog after blog feeling more hope as each day passed. I truly believe that God does not make mistakes and this was no accident. There is a reason that this boy was brought into my life. Several people said that Richard and I are special people and that's why we were chosen to be Camden's parents. No way is that true. I am not special. I am no more special then anyone I know. Camden is special. He was given to me to change my life. God knows that I needed to fix something that was broken in me for a long time. He knows that I needed to slow down and learn to appreciate each moment in life. He knows that I needed to open my eyes to what's important. I am blessed to have a wonderful husband who will be the best father for our boys. My husband would become my rock. He is the type of person who only dwells on things for a day or two and then moves on. This is what he did. He decided it was time to move on and start our lives. He fell in love hard with our son and never looked back. I still am on this roller coaster ride of emotions, but I will tell you that as each day passes I am closer to getting off. I am totally and utterly head over heels for my son...for both of my sons.

"You will have happy days. God will turn your darkness around.
He will give you beauty for ashes, joy for mourning." - Joel Osteen

Camden stayed in the NICU for a total of 54 days. For the most part it was all about growing and learning to eat. He did have a time where he needed oxygen for a couple of days due to difficulty breathing. We are still not sure what caused all that, but he was fine after. His biggest challenge by far was learning how to eat. Oh my, that was frustrating! I honestly thought at one point that he would never get it and we would be going home with the NG tube. Don't get me wrong, that wouldn't have been that bad compared to what others have been through, but it certainly wasn't ideal. For weeks he would only take 5-20 ml per feeding and that was only about twice a day. We had a long way to go. At the beginning I assumed we would only be there for about 4 weeks. Never did I imagine it would be 7. Every day I spent up at the NICU I felt like it was my second home. I was still staying at my dad's house at this time since it was only 10 minutes down the road. This way Carter would be able to stay with me too. I had a lot of time to make up for from being in the hospital for 3 weeks. Richard would make the 2 hour drive once or twice a week to come see us. I know that man must have missed his family something awful! He is pretty self sufficient so I'm pretty sure he managed quite well. Each day became monotonous. Go to the hospital at 9:00am and 3:00pm. Some days it was 6:00pm instead of 3:00, but each day was the same. Bath days were Sunday, Tuesday and Thursday so I would go a little early to bathe my boy. The nurses and physicians became friends. I learned about their families and what was going on in their lives. We sat and talked and it was nice to pass the time. They put up with my craziness, and believe me I was crazy, and genuinely loved my son. I will be forever grateful for everyone that cared for us! The week leading up to Camden's discharge he started to eat more. He was now 6 pounds and getting stronger each day. I remember coming in on a Wednesday and being told that he will probably leave Friday. What? Really? I never thought the day would come! Well that Friday came and we were discharged. It was very surreal. You become so accustomed to a new environment and it was hard to believe that it was time to go. Although I was anxious and a little scared, I was ready to take my boy home and be a family. We said goodbye to our wonderful new friends and left to start a new chapter in our lives.

He loves bath time...can't you tell?!

There is nothing like snuggle time!

Love these girls! They are amazing!

Our attempt at a photo shoot.


Goodbye NICU and goodbye to our new friends!


  1. Wow! This brought back so many memories of that raw emotion after finding out our Eli (4 months old now) has Down syndrome. Although I had a prenatal diagnosis, the feelings of fear, despair, and then guilt for feeling that way, are the same. The awesomest part of this journey (besides our wonderful children!) is the new perspective we get on life. Eli has taught me to slow down and cherish what life offers. It's so nice to get to go on this adventure with new friends! Thanks for sharing your beautiful, albeit difficult, birth story. Camden is perfect!


    1. I totally agree on the new perspective on life! I see EVERYTHING so differently now. I have learned to cherish each moment. It's so nice to have friends that just "get it" because no one else really does. I'm blessed to have great new friends! And...Eli is absolutely perfect too!