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.

http://www.childrenshospital.org/az/Site803/mainpageS803P1.html

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 8^th. 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…”

Anthony's Birth Story- Part 1

I have been avoiding writing this post for a while now. I know it needs to be written, it is the main purpose of creating my blog. It’s just.. .every time I sit down to type, my heart begins to beat faster, a lump forms in my throat, and I am immediately brought back to that exact moment. Reliving that moment, my son’s birth, is one of the hardest things in the world. It should be the most amazing story in the world, one that you enjoy telling a hundred times to everyone you meet…but, not me. That’s not how our story began. I had my phone off for a few days after his birth because it was just too hard to wrap my head around. How was I going to tell everyone? How could I make myself relive it over again? Well, finally after over a month, I chose today. I am sitting bravely here at my computer, ready to open my heart up to the world. With my baby at my side, I have the strength to share our story. This is the honest, amazing, scary, emotional, and wonderful story of my son Anthony’s birth.

It seems like everything about my life has gone according to plan. Until now, I have never liked living moment by moment. I enjoyed having everything planned out, so I knew what was going to happen next. I liked planning ahead for the future. I now realize that this is not the way to live life, but I didn’t know that back then.  I didn’t know that everything about my life was about to drastically change. My plans were about to be left in the dust while we started our new journey down an unmarked road.  

My pregnancy, surprisingly, was almost enjoyable. I didn’t have any complications, and aside from the occasional complaining that all bloated, and uncomfortable pregnant women do, I really had it easy. (My husband has told me that I complained a little more than I thought, but I think I did a good job keeping it well contained, ha!)  Throughout the eight and a half months my days were consumed with preparing for Anthony to arrive. Every spare moment I was on Pinterest finding the newest project I needed to do before Anthony came. Anthony was going to be the first born grandchild for both my family, and Joe’s. He was the first born in our group of friends too. Everyone had dreams of what this little boy was going to be, and what he was going to do. My husband and I had big plans for Anthony. We would sit and imagine how amazing our lives were going to be.  Anthony was going to be a great hockey player, and my husband was going to teach him everything he knew. I pictured my son going to school and making everyone so proud with what he would accomplish.

After two previous early labor visits to the hospital, my husband and I felt like we practically lived there. So, when we went for the third time that week, we were honestly expecting to be sent home baby-less again. When the nurse told me that we were going to stay and get everything started, I couldn’t contain my excitement. Everything I had planned for, everything I dreamed about… it was about to happen today! I was hours away from meeting my son! My birth plan was to try and deliver without any type of drugs. I decided very early on in my pregnancy that I wanted to be completely natural. I did not take any medications, or receive any vaccinations during the pregnancy. However, I really overestimated my tolerance for pain. When my contractions became stronger and closer together I tried all the techniques that you read about. I focused on an object, practiced breathing, and counted through them in my mind. Let me just tell you, nothing worked. Every time a contraction came on, I felt like I wanted to rip my skin off! So, after a few long hours of contractions, I decided to abandon my original birth plan. Bring on the epidural! Once I got the epidural, the whole process became enjoyable. I was able to sit and talk to my husband without screaming at him to hold my hand. We were able to soak up the excitement in the room as everything was being prepared for Anthony’s arrival.  

Once the Doctor came in and told me I was ready, everything seemed to happen so fast. I pushed for forty-five minutes, but it honestly seemed a lot shorter than that. Thank goodness for the epidural because I couldn’t feel anything.  Joe held one leg and the nurse the other (My brave husband for witnessing it all and still loving me all the same after!). Then it was time to push! The only pain I felt was in my head, literally. I thought it was going to pop off from the pressure of holding my breath and pushing for ten seconds during every contraction. I swear the nurse counted slower than anyone I have ever heard before.

Let me rewind for one second before typing what comes next. Before all of the pushing and head popping off pain, the nurse asked me if I would want my son put on my chest right after delivering him. I told her, “Of course! There is nothing I would love more than that bonding time!” She said, “Wonderful, we will most definitely do that, if everything is okay with him.” I seriously didn’t even hear that last part, because I was just so excited to finally hold my son. I had seen his face in ultrasounds, and 3-D ultrasounds, but I couldn’t wait to meet him and have this immediate bond that every mother gushes about. What could go wrong…?

I remember pushing him out.

I remember feeling so amazing.

I remember Joe fumbling to cut the cord.

I remember my son not crying.

 I remember seeing his face for a split second before he was taken to the other side of the room. . . he looked different.

Why did he look different?

Why wasn’t he crying?

And then everything started to go black. I can honestly say I don’t remember everything that happened after that point. It all happened so fast, yet my world stood still. I couldn’t breathe.

I so badly wanted to know what was going on, but no one in the room would answer me. It was as if I wasn’t there, I didn’t exist. What was going on?

Then I heard him cry, I took a breath with him. Relief. Little did I know, it was my first breath as a different person. I would never be the same.  

That moment of relief slipped through my fingers faster than I could hold onto it.

Then everything about my world changed.

The nurses kept looking at each other with concerned faces, whispering. They wouldn’t tell us what was going on. He’s okay, right? … nothing.

I heard them ask my husband if we had the first trimester screening test done. Joe said no.

We didn't get the test done because insurance wouldn't cover it. No one had to tell me anything. I knew what that meant. I knew what they were trying to say. My son had Down Syndrome.

No. no. no. no… NO! This can’t be. Someone is wrong! I couldn’t breathe. I locked eyes with Joe. I wanted him to make it all better, make it not true!

People have talked about having an out of body experience before. I never understood really what that meant, until this moment. It was like I was above, looking down, watching this all happen. It wasn’t my life. I was completely removed from what was going on. They grabbed my finger to put on the birth certificate. They tried talking to me, no use. I wasn’t there.

Then two nurses in green scrubs came into the room, while I was still getting stitched up, before I held or even saw my son. The one nurse had a packet in her hands. She came closer to Joe and me. She asked if this was a good time to talk about Down Syndrome with us. A good time? A good time…was she serious? Then I came back into my body, full of anger. I wanted to jump off the bed and shake her. How could she not see how horrible she was being? We sent them out of the room.

They finally put my son on my chest.

No. this was not my life. I was supposed to be happy. I was supposed to look into his eyes, hold his little fingers and melt. I was supposed to be crying tears of joy, not sadness. I was supposed to wish him a happy birthday. I was supposed to be seeing the son I had imagined for eight and a half months.  

I wanted to press rewind. I wanted to go back to the time where nothing was wrong, and everything was as it should be.  I wanted to have the moment that other mothers get. I was robbed.

I knew that everyone was in the waiting room wanting to come back and see our son. My whole world had just collapsed. I didn’t have enough time to even wrap my head around what had happened. But, I knew they had to come in. 

With tears in his eyes, Joe went out to let them in. I don’t know how he found the courage or the strength. He told them all that our son was born with Down Syndrome before they came in. Everyone entered the room with red puffy eyes and tears rolling down their cheeks. These were different tears then I what I imagined before. The room quickly filled with all of the people I loved most. I was showered with hugs and kisses. They passed around Anthony and took pictures. I just went through the motions.

Then everyone left, and I was wheeled to my new room. It was just the three of us, a new family. It was quiet. Then I let everything go. I cried harder than I ever have in my life. Joe held me, and I held our son.

It wasn’t until I tried to feed him by myself for the first time, that I felt the bond. I looked deep into my son’s eyes, and he had me. I knew at that moment that everything was going to be just fine. It wasn’t the moment I had pictured in my mind, but it was ours. It was our amazing life. I wouldn’t let anything change that. My son was perfect.

I want to be honest for any other mother that may be going through these exact moments. I want you to know that it is okay to feel anything and everything you are feeling. You have to go through this in order to make it out okay on the other side. That’s where I am now. I’m in the most amazing place. I couldn’t imagine life without Anthony. I love him so much more than anything in this world, and I wouldn’t change his extra chromosome. It makes him special, it’s one more chromosome to love! But, like I said, you have to go through the bad to get to the good.

Over the next few days my emotions were never consistent. I went through a roller coaster of feelings I never knew I had. I would be overwhelmed with happiness in one moment, and then quickly slip into such unbelievable sadness. I felt:

*Grief. I mourned the loss of the son I imagined and planned for. – I realized that even though it isn’t the life I planned, it’s better. My life, because of Anthony, is going to be so much bigger and better than anything I could have imagined. We are blessed.

*Anger. Why me? Why did this happen to my family? Why Anthony? He doesn’t deserve to struggle in life. – I realized that my husband and I were chosen. We were picked to be Anthony’s parents because he was meant to be in this world. And, throughout any struggles or difficulties he may face in life, he will have two extremely supportive parents standing by his side.

*Fear. I was terrified of the world outside our supportive bubble. Will they love and accept Anthony as much as we do? Will they judge him before getting to know how amazing he is? - As Anthony’s mother I believe it is my duty to protect him. I will raise awareness. Down Syndrome is nothing to be scared or fearful of. I want to tell the world just how wonderful it is, and I will.

*Jealously. I was green with envy over any other mother in the hospital that got to have the experience they imagined. Why did they get to have everything work out just the way they planned, and not me?- Yes, I didn’t have those moments. But, I am having them now, times a million. I am experiencing life through different eyes, and Anthony is showing me just how beautiful it can be. I will be having my “moments” every day for the rest of my life thanks to him.

*Hurt. My heart ached when anyone would cry or apologize when we told them about Anthony. Is there something that we should be feeling sorry about? – Don’t feel sorry for us, or anyone else that has been blessed with a child that has Down Syndrome. Instead, congratulate us. We are lucky to have an amazing son/daughter that can instantly change the lives of those around him/her for the better.

*HAPPINESS. JOY. LOVE.

There was a lot that happened after experiencing the bonding moment with my son. Only hours after, he was taken away to the NICU because he couldn’t maintain his temperature, and was having a difficult time breathing. He spent two weeks in the NICU before he was strong enough to come home. The story of the NICU experience is another post for another day.

Please feel free to leave me a comment after reading Anthony’s birth story.  I hope I was able to help someone with my honesty. It will be okay. It is a beautiful life, and it’s better than we can imagine.

Keep reading, because I can’t wait to share our amazing life with the world. Not every post will be about Down Syndrome. Right now in our lives, we are living moment by moment… celebrating all of Anthony’s milestones along the way. We are enjoying being a family. Yes, there probably will be hard times down the road, but for now we have a beautiful healthy baby boy and we are experiencing the joys of having a new family...just as anyone else would.

Thanks for reading!