Saturday, September 7, 2013

Anthony's Birth Story- Part 2, the NICU

I wanted to start off this post by expressing my gratitude for all of the support that was shown to my family after sharing Anthony’s birth story. That post was probably one of the hardest things for me to write in my life. I put my heart out on the line, and I was unsure how it would be received.  But now, it feels like a weight is lifted off of my shoulders, I don’t have to hide anymore. Anthony’s story is out there for all to see, and I can move on with living life. Honestly, I wasn’t expecting the rush of emails, messages, and comments when I published the post. I just sat back and watched it all happen. I felt more love and support than I knew was possible. People that I haven’t talked to in years shared my story with their friends, and wrote such kind things about it. That meant the world to me. It amazed me that so many people even cared to take the time to read it. I felt like I really accomplished what I set out to do, in just one post. I used to fear that Anthony wouldn’t be accepted for who he is, but not anymore. He is being brought up in a time where people are more supportive than I realized. That wasn’t always the case. Children and adults with DS, or any disability for that matter, were not always accepted with open arms by the world. I am so thankful that Anthony does not have to experience that. I know that it’s still not perfect, but the world is changing, that’s for sure!  It was amazing to see such an outpouring of love. I am not alone in this journey. Thank you for showing me that!

Now, on to my second post…. If you didn’t already read Anthony’s Birth Story Part 1, start there before reading this.

Hospital Stay

Anthony was taken to the NICU around midnight. We didn’t even have the first night together as a family. I really needed that, to heal.  I felt like I was living inside a snow globe. My world was completely shaken and turned upside down after finding out Anthony’s Down Syndrome diagnosis. Once everything seemed like it was starting to settle back into place… someone came in our room and said NOPE let’s give it a few more shakes. We couldn’t catch a break. Scratch that… my poor baby Anthony couldn’t catch a break. In all honesty, I am glad that the nurse working in our room took Anthony when she did. She was able to see things that I couldn’t. I am not a nurse, and had no idea that my son was struggling to breathe due to the low muscle tone in his neck (an indicator for DS). I didn’t know that he couldn’t regulate his temperature, or that he had a hard time grasping the combination of eating, sucking, and swallowing.

As if taking him away wasn’t enough for one night, we also were told that he was going to be receiving an ECHO on his heart sometime tomorrow. The nurse told us a very scary statistic: 50 % of babies born with Down Syndrome have some sort of heart defect. There it goes again, a few more shakes. Our world just couldn’t settle. How many more shakes could we take before breaking completely!? 

It was hard to wrap my head around everything that had happened in one day. Now we had another scary, possibly life changing, obstacle thrown in our faces. I felt like I was slipping further away from reality. I needed a life-line. I needed something to go right. We had to sleep that first night without our son, it was heartbreaking. As a mother, it was a strange feeling. I was only a “mother” for a few hours, then it was back to just being me and my husband again. We wouldn’t be waking up to argue over whose turn it was to change the diaper. Instead, we were up all night for a different reason. We were so completely overwhelmed with worry for our son. This poor guy was new to this world, he was so small, and he had already been through so much. He just needed his mom, and I needed him.

During our hospital stay we were constantly in the NICU visiting Anthony. My own recovery quickly took a back seat to my son. Who has time to worry about that when you have a baby that needs you? It was so hard to see Anthony in the NICU under the heat lamp, hooked up to tons of monitors, with IVs in his hand, a feeding tube down his throat, air tubes in his nose, and prick marks on his heels. My poor little baby. I wanted to make it all go away. I just wanted to snuggle him and let him know that it was going to be okay.
While we waited for his ECHO test to be administered, visitors trickled in to see the new addition to the family. I was glad they were there, don’t get me wrong, but I felt like I couldn’t look anyone in the eye. It was way too painful. I didn’t want to face what had happened, and what was happening now. I just wanted it to be me, Joe, and Anthony in our own little safe bubble.
My precious baby's first day in the NICU

Family Photo!

He loves his boy so much

The ECHO test results came back when Joe was with visitors seeing Anthony, and I was in the hospital room resting. When Joe opened our door, he looked lighter… like he was happy. Happy. That was an emotion I wasn’t too familiar recently. He looked at me, smiled, and said that the doctor told him she had never seen such a strong heart. Joe said that Anthony’s heart was perfect. I couldn’t believe it. I smiled for the first time, in what seemed like a long time.  I picked up the phone and started to call family, I was so excited to finally give some good news to them.  I felt happy, so happy and lucky! I know that not every family in our situation gets the same great news that we received. I honestly don’t know if I would have been strong enough to get bad news. Someone was looking out for us.

Getting this test result back seemed to set the tone for Anthony’s stay in the NICU. He was out to prove everyone wrong. He was a strong little boy, and he made us all so proud with his ability to overcome every health obstacle that he was faced with.
Our little corner of the NICU

My little glow worm! Getting his light treatment for jaundice. 

Leaving Without Baby

Saturday came a lot faster than I would have liked. I dreaded Saturday. It meant that we were leaving, we had to check out of the hospital. We had to take all of the flowers, balloons, cards and go. We had to take everything but our baby. Saying goodbye to Anthony made me sick to my stomach. Joe would have to drag me out because I sure wasn’t going to leave my son willingly. I was leaving a piece of me at that hospital, and an important piece of me at that…my heart. That drive home was silent, the whole way. I just sat there feeling bad for myself. This wasn’t how I pictured coming home from the hospital. I didn’t have to sit in the back, and I didn’t have to remind Joe to drive carefully. Instead, the car seat was empty and with every minute there became a bigger distance between me and Anthony.

When we pulled up to the house I almost couldn’t look, it was too heartbreaking. There was a stork on our lawn (that my family bought, and I loved it so much) that told the whole neighborhood about Anthony’s arrival. I wanted to just run inside. I didn’t want to have to explain why we didn’t have our son to anyone.
I was so thankful to have had the support of our families.  I don’t think I would have eaten if it wasn’t for all of the amazing home cooked meals we were given.

Pack my bags, I’m moving in

The uncertainty of when we would be bringing Anthony home killed me. I felt like I lived at the hospital. People would say to me “I know he is in the NICU, but you’re pretty lucky that you get so much time to rest and heal before bringing him home. Enjoy all of the sleep!” Sleep? Were they crazy? I got less sleep than I would if my baby was home with me. Every time I would leave my son’s side to come home during a nurse shift change I felt guilty. I felt like I was a bad mom, and I was guilty I couldn’t be there for him more. I was guilty that the nurses seemed to know my baby more than I did. I didn’t want him to forget who I was. Because I was still recovering, I wasn’t allowed to drive myself to the hospital. If I could, I seriously would have moved in.  I would look at his little face, and it would crush my heart to leave. I felt like I was abandoning him. He needed me, I think.  In all actuality, I needed him a whole lot more. I was only okay when I was with him. When I was “home” sitting alone, I felt so empty. I would cry for endless hours because I just wanted to hold my son. I wanted to make sure he was okay. I longed to hold his hand through it all and kiss his little lips. I would literally drive myself crazy. I think google should be illegal when you’re upset. I swear I only found such negative and horrible things during my searches. Once again, I was looking way too far into the future. I would get upset learning about all of the health concerns that come with having Down Syndrome, when instead I should have been focusing on the moment at hand. But, everything was so different when I was able to be with Anthony. He took all of those worries and concerns away. He just made me happy. I felt like I could be myself again.

“Home is wherever I’m with you…”

I just wanted him to get strong enough to be able to come home. I would call every morning to check how he made out through the night. Every day he seemed to conquer something new.  I was so proud of my baby boy, he was stronger than everyone thought. He was out to prove the world wrong.

As hard as it was for us to have Anthony away in the NICU, I know it was just as hard for our families. They wanted to see him and bond with him. It was so wonderful that everyone wanted to visit; it reminded me that Anthony is so lucky to be surrounded by unconditional love! The only problem was, we had big families! The NICU rule was you could only have one visitor at a time with one parent. So, that meant that when visitors came, we would lose our family bonding time because Joe and I couldn’t be in there together. It was hard, but I had to suck it up and share my son. I just felt like running away with him because I didn’t have enough time to bond with him myself, and I was his mother.  

I had a break down when we had visitors and I had to wait outside while Joe was in the room with them. It was a “run away, sink down on the hospital floor, ugly cry” kind of break down. I remember looking in at them through the window, and I just lost it. I couldn’t believe that I had to stare at my son through glass, when I so badly needed to hold and be with him as much as I could. It just didn’t seem fair.
Family watching Anthony through the window, waiting their turn to come in. 

It worked out for Joe’s schedule to go every night around 9:30. Those were the nights I loved the most. They felt the most normal, like we were any other family getting our son ready for bed. We started to form a nighttime routine. We would change his diaper, I would feed him, we would wrap him up, and read him a story. Then it would be time to “tuck him in”. I hated leaving, but I knew he was in great hands. We really loved all of the staff that worked in the NICU. They formed relationships with all of the families and most importantly with the babies. That made me feel safe. They were wonderful people that taught us a lot about how to care for a baby. We were definitely prepared to take Anthony home, whenever he was ready.
A bed time story! 

Daddy taking a turn to feed Anthony

Good night kisses from Mommy

One of the last things we were waiting for was his genetic test results back. We knew he had Down Syndrome, but I think we just needed to hear it confirmed by a test before we told anyone outside of our family. During our time at the NICU we also learned that there are three different types of Down Syndrome. We were curious, and very nervous, to find out which type Anthony had.

·         Down syndrome (or Trisomy 21) accounts for ninety-five percent of people with Down syndrome. A child with Trisomy 21 has three copies of chromosome 21, rather than the normal pair.
·         Translocation Down syndrome accounts for just three to four percent of people with Down syndrome. Translocation is what people are referring to if they say that the condition is inherited, because usually one parent is a carrier. The extra #21 chromosome is present, but attached to a different chromosome in the egg or sperm. The clinical features of people with Translocation Down syndrome are indistinguishable from those with Trisomy 21.
·         Mosaic Down syndrome accounts for less than one percent of all people with Down syndrome. Children born with Mosaic Down syndrome have some cells with three copies of chromosome 21 and some cells that have the usual pair. Clinically, babies born with Mosaic Down syndrome can have the same features and health problems seen in babies born with Trisomy 21 or Translocation Down syndrome.However, the presence of cells with the normal number of chromosomes may result in fewer characteristics of Down syndrome.

Joe and I have always had dreams of having more than one child. We were nervous that Anthony had the possibility of having Translocation Down Syndrome. That, in so many words, would mean that the rest of our children would have DS too. (At least that is how I understood it from what the doctor said). When the test results came back that Anthony had the most common form of Down Syndrome, I was relieved, but also sad. It was almost like hearing it again for the first time.  Joe and I tried not to talk about it a lot; we wanted to just enjoy our son without labeling him. Honestly, we couldn’t always see the physical characteristics of Down Syndrome in Anthony. To us, he was just our adorable baby and that was that.
Seriously, how cute is that face! Makes a mama's heart melt! 

Hellllooo ladies! 

Coming Home

Two weeks passed. He was doing well without the feeding tube, was off the oxygen, and passed his car seat test (woohoo I was one proud mama!). The only thing we had to worry about was making sure we positioned him in a way that did not close off his airway. That meant having to put a neck roll behind him when he slept, and watching when we held him that his chin didn’t touch his chest. We were just waiting until the day we got the call that we were allowed to bring him home.

 Finally the day came, August 8th. I couldn’t get to the hospital fast enough. I just wanted to bring my baby home. That car ride home was everything I expected it to be. I was in the back seat, holding his hand, and was on edge when any car would come too close! We had some precious cargo! Joe did a great job getting us all home in one piece, without having a nervous breakdown!
Getting ready to finally leave the NICU

Daddy being a very careful driver

Happy to be on his way home with Mommy and Daddy

The next few weeks were so exhausting. We literally had visitors every single day. That was so hard for us, because even though Anthony was already 2 weeks old, it didn’t mean that we had him home for two weeks. I was still trying to adjust to my mommy role. We were trying to play catch up and make up for lost time. It was really tiring having to entertain so much, but it was nice to see how many people cared for this little man.  Our hearts were full. We were finally a family. Yes, there will be hard times ahead, but I know we can face anything together as a family. I love my life, and I love my family more than anything in this world. I feel really lucky and blessed to be Anthony’s Mommy. J

This little man is going to change the world. I can just feel it.

“Lend me your hand and we’ll conquer them all... Lend me your eyes I can change what you see…”


  1. Hi Kelsey-though we have never met, I read your blog through postings from my friends at Concord. Since I work at GVHS, I have had the pleasure of meeting your husband. First I must say congrats on the birth our your beautiful son. I wanted to comment after your first blog but hesitated since I don't know you. While we may have never met, I feel as though I have some similarities that I wanted to share. My first 2 children ended up in emergency c-sections. So I thought the birth of my third child would be much easier if I picked out the date and scheduled it for the time that was convenient. I thought out of my 3 children the third would be the easiest as I knew what to expect and I was ready. I was dead wrong! Immediately after the birth, Drs. suspected trouble and within 24 hours my son was in complete lung failure. I was not able to hold him or even touch him. He was flown to CHOP and was given last rights. Thankfully we live in an area that we are fortunate to have 2 amazing childrens hospitals so close. I credit CHOP and the incredible Drs. for saving my sons life. He was hospitalized for almost 1 month and the uncetainty and all the things we were told were so hard to process. During our stay at CHOP our family and friends stepped up and helped with our 3 and 4 year old kids at home and we spent our days and nights making deals with God, promises for our future, praying, and watching over our beautiful son. I finally held my son after 2 1/2 weeks. We accepted that whatever the case and however we could have our son that he was ours and we so wanted him in any way we could have him. Our son is now 10 1/2 years old and is incredibly smart, handsome and funny. Every milestone he hits, accomplishment either big or small, and special moment reduces me to happy tears! It all comes rushing back and I am so grateful to have him in my life! Enjoy your beautiful son and know that you and your family are loved. Wishing you a lifetime of incredible happy tear filled memories! Dawn DeMarco

  2. Amazing story. Thanks for sharing. I totally relate with how hard it is to not have your baby there with you. We have a two year old girl with Down syndrome and she had a lot of medical complications. 5 short minutes after having her she was rushed to the NICU where she would stay in some sort of ICU for almost 6 months. I really appreciated you sharing your story. You have a beautiful family and such amazing support. Congratulations. Our story is written at: