Thursday, September 26, 2013

Two Months

I honestly can't wrap my head around the fact that my little monkey is two months old! We had his check-up today and it was our first "outing" just the two of us :). I wish I didn't pick today to be the first time I took him out alone because it was a hard morning for us! The car ride was easy, I put in a new mirror, and he loved looking at himself (too cute!). The start to the doctor visit was easy too, until they told me that he had to get 4 shots and one immunization orally. I think it was harder for me to watch him scream as they put two shots in each leg. I'll admit... I cried like a little baby myself. I just didn't like seeing my little man in pain. He forgot all about it a few minutes after it was over, so that's good. He was just a very sleepy boy all day. I think I will make daddy take him next time he has to get shots :) !
making silly faces at himself in the new car mirror :)

A happy baby... little does he know he is about to get his shots and won't be happy for long :(

Age: 2 Months
Date: 9/25/2013
Weight: 10 lbs 10 oz
Height: 23 ¼ inches
Head Circ.: 37 cm

Eating: He eats 3-4 oz every 2-3 hours

Sleep: He slept through the night a few times, but usually wakes up every 3 hours.

Likes: snuggling, walks, baths, car rides, his monkey swing, tummy-time, daddy’s funny songs

Dislikes: the dark, and daddy’s “scary” voice, the aspirator, hiccups, and burping!

Milestones: Starting to smile more, trying to suck his thumb, lifts his head up and tries to look around, can roll onto back when on his stomach, tracks with his eyes (he notices his mobile and toys now!)

Such a big boy

Tired from all of the pictures

One Month

*Yesterday Anthony was 2 months old! Since I didn't start this blog until after his 1 month, I decided to post it now (better late than never...right?)

Age: 1 Month
Date: 8/25/2013
Weight: 8 lbs 2 oz
Height: 21 ¼ inches
Head Circ.: 34 cm

Eating: He eats 2 oz every two hours

Sleep: He loves to sleep, and can sleep through anything! The more noise the better J I would like to thank the NICU for that!

Likes: Rocking in his chair with Mommy listening to his Baby Einstein music, laying on his tummy, being wrapped in a towel after bath-time, his soothies, story-time and kisses from mommy and daddy!

Dislikes: dirty diapers, being woken up to eat, his arms swaddled, gas!

Milestones: Starting to lift his head up (still pretty wobbly at it), pushes off with legs when laying against your stomach

My happy little man

big yawn!
Sleepy time with his owl friend

We had a little "birthday" celebration for his 1st month :). Yes, we were the crazy parents that had a party for a one month old! I couldn't help it... I was just wanted to celebrate everything he had overcome in his first month of life. He went through a lot, and he deserved cake! (even if he didn't get to eat it.. it was the idea that counted!)

Mommy and Daddy are so in love with this little guy

Mimi and Poppy

Grandpop and Grammy

Present time! This boy is so spoiled by his family 

Monday, September 23, 2013

The Test

There are moments in life that test you. These moments are meant to test your strength, your will to push through all of the crap and make it out stronger on the other side. I went through one of these moments recently. I was tested, and I failed miserably. But, with that being said, I do believe that it made me realize a lot about myself.  I wasn’t as strong as I have been making myself out to be. I have put on a fa├žade, a strong face for everyone around me. But, the truth is, I’m still dealing with everything and I don’t think I can just move past all of those initial feelings so quickly. I think I have been caught up in everything, in all of my happiness, and I haven’t faced reality. The reality is…. I still have a lot of work to do.

My “Moment”:

Joe and I were excited to go to our neighborhood’s annual block party. With Anthony cozy in his stroller, and cookies in hand (store bought… because, well who are we kidding, I was just too lazy to bake anything) we were ready. When we took those first steps out of the house, I was happy. I honestly was so excited to show off our handsome little nugget to all of the neighbors. But then, anxiety started to creep up on me. I remembered that these people didn’t know about Anthony. They didn’t know our son was born with Down Syndrome. I shook off the worry, and kept walking towards the block party. When we were spotted I had no choice but to keep going, there was no turning back now. All of the neighbors swarmed the stroller to catch a glimpse of the new guy. The old ladies oooh-d and ahhh-d at Anthony. Joe left my side to get a drink, and I was stuck with a ton of people staring at my son.  The anxiety was back in full force. It felt like everyone was staring at him for way too long. I just knew that they were looking at his features and thinking that he was different. They kept smiling, but I knew. Their eyes would stare at Anthony, and then at me… like they were waiting for me to say something. But, I didn’t say anything. I just let them look at my son, and I had to try and convince myself to nod my head and say thank you when they told me how precious he was. When I couldn’t take it any longer I signaled Joe over to save me so I could walk away. (When I told Joe about this later in the day, he assured me that he did not notice the same thing. It was almost as if we were at two different parties. He said that everyone was genuine in saying how cute they thought Anthony was. He didn’t think that they were looking at him differently at all. I guess that is just how I felt because that was my biggest fear as Anthony’s mom.)

While I was taking a moment to compose myself and clear my head, I was approached by one of my neighbors. He had just welcomed a son into his family a year ago. He hugged me and congratulated me on Anthony’s birth. Then came the questions. He asked why Anthony wasn’t home for two weeks.  I could swear that he knew something, and that he knew my son was different. I had word vomit. It all just came out and I couldn’t stop it. “Anthony was in the NICU for two weeks because he was born with Down Syndrome and had trouble breathing due to the low muscle tone in his neck.” I could tell that I caught him off guard, he swallowed hard and then said, “He doesn’t look like he has Downs.”

We talked about it for a little, about how much I loved Anthony and how amazing he was. I don’t know why, but I felt more at ease talking with him knowing he knew about Anthony. He knew our secret. I know that it’s not really a secret, but it feels that way when people don’t know. It is like I walk around with a big elephant that I have to constantly explain so everyone knows it is okay. Posting my blog really helped lift a huge weight off of my shoulders. I felt like I could finally breathe, everyone knew about Anthony and I didn’t have to keep explaining. However, until the block party, I forgot that it was only the people in my circle that knew. I still had a whole world I had to face. Until that moment, I had only been surrounded by people that knew, and loved Anthony no matter what. 

When I left the block party to feed Anthony, I broke down inside the walls of my safe house. I was scared. I was scared of the world. I didn’t want people to look at my son like something was wrong. I didn’t want them to look at him like he was different. I wanted to protect my son. But, I know that I can’t go through life only inside my safe house, I will at some point need to venture out into the world again. I just hope that the next time I step outside my house I am stronger. I hope that I don’t feel the need to explain my son. I hope that once everything is okay with me I won’t care what other people think. It all comes down to me and how I handle situations. I just want to be able to be a strong mommy for Anthony.

On another note...

 Check out this amazing video. This man is truly an inspirational person for Anthony to look up to.

VIDEO- Elite Powerlifter with Down Syndrome

Monday, September 16, 2013

My not so little boy

I now understand when people say "don't blink" when referring to how fast kids grow up. Seriously, when did Anthony get so big? He is such a little chunker these days. This past week he has officially grown out of newborn shirts and onesies and moved up to size 0 to 3 months. You would think that his whole body would move up to the same size... but nope. The funny thing is he still wears newborn pants, ha! The kid has such a Buddha belly that he is two different sizes for tops and bottoms! I'm not sure how much he weighs currently, but the last time we were at the doctor (for his one month check-up) he had gained a pound in a week. We don't go back to the doctor to check his weight until his two month appointment. I am willing to bet that he is close to 10 pounds now.

What happened to my little peanut that didn't even fit in newborn clothes? Stop growing so fast little one! I better not blink because before I know it he is going to be going off to school!

okay... maybe he isn't growing THAT fast, but it sure does feel like it!

He has also been getting really good at lifting his head up. I am such a proud mama! Check out the video of him I posted on my youtube account (you can check back there often because I am going to start posting a lot of videos)
VIDEO- click here to watch

Oh hey Mom :) 

a quick time-out to snack on the sheets

oops, I forgot which end I was trying to lift up! let me try again.... 

There we go, aren't I so cute!?

Friday, September 13, 2013

Become an Avenger!

Our First Buddy Walk! 

We came up with the team name : Anthony's Avengers! (T-Shirts are still in the design process for those that want to walk and wear a team shirt... I will post more about them later!)

Captain Anthony to the rescue! 

We are so excited to be involved in our first Buddy Walk. Please help us to raise money for this amazing cause! We are walking to raise money for the Trisomy 21 Program at CHOP on October 6th. To access our team click on the link below. It will bring you to our team page. You can either choose to join the team and walk with us on October 6th, or you can just donate to help the Down Syndrome Program at CHOP. 

Thank you SO much! We really appreciate all of the support and love 

Anthony's Avengers

If you have any questions please feel free to ask me in the comments!

Tuesday, September 10, 2013

Pinterest-Inspired Photo Shoot

When Anthony was three weeks old, Joe and I wanted to take some pictures of him. I found the best idea on Pinterest (where all the best ideas are started).

To make it look like a more professional shoot, you tape up a "backdrop" to the wall and floor. For our backdrop we used a table cloth, but you could also use wrapping paper, a sheet, a thin blanket.. etc. They're not perfect, but here are the pictures we ended up with. (Hopefully I get better at taking pictures with time!)

(P.S. make sure you have an extra blanket/diapers handy if you're planning on doing cute naked baby shots. . . Anthony thought he was a funny guy and decided to go to the bathroom on our props lol)

big yawn!

With all of his friends :)

Are we done yet mom?

My handsome boy

He thinks I'm pretty funny

cute little butt :)

"YO mom get me some milk!"

He looks big in the other pictures... this one where Joe is moving him around shows just how tiny he was 

Oh hey owl, you want to be friends while mom is setting up for the next picture?

ooo look over there, owl! 

best friends

Sunday, September 8, 2013

Happy Grandparent's Day!

Happy Grandparents Day! 

Anthony wanted to share how much he loved his grandparents :). 

Thank you so much for all you do for Anthony, and our family. We love you all so very much. Anthony is a lucky boy to have such amazing grandparents in his life! 

Mimi and Poppy

Grammy and Grandpop

Anthony's Great Grandparents : Pop-Pop, Mom-Mom, and Grandmom :)

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…”