Wow, time has really gone by fast. I have been thinking about this post for a while now and I could cry but I won’t. 🙂 Preparing for his party today I was thinking about when Dylan entered this world. I was induced at 39 weeks because he wasn’t growing as he should and the doctors didn’t know why. It was all just so different from when Hailey was born. When I gave birth to her it was like a party. I had my mom, grandma, sister and best friend and Mitch of course in the room with me. I had my other best friend as my nurse (she just happened to be working that day). I had an amazing epidural and remember fixing my hair and makeup right before my doctor came in for the delivery. We were all laughing, crying with happiness, snapping pictures and taking videos. Hailey was placed on my chest right after birth and I looked down and couldn’t believe how perfect she was. She breastfed right away like a champ and all of our friends and family came to the hospital to visit and bring flowers and gifts for us. We took hundreds of pictures. It was perfect.
When Dylan entered our hearts it was a different story. I think deep down I knew that something must have been wrong. I knew from my nursing background that unexplained IUGR usually is indicative of something. I wanted to believe that everything would be ok and that he was just going to be small. When I was in labor the setting was very different. It was just Mitch and my mom with me and it was very quiet. When I was ready to deliver I had to remind Mitch to get the camera ready. Very few pictures were taken, we never even got out the video camera because it all happened so fast. I pushed for only 20 minutes and when the doctor told me to reach down and grab our baby I saw his face and I knew. I knew it was something. He wasn’t breathing or crying so the nurse took him from me and brought him over to the warmer. She gave him oxygen and suctioned him. I remember her telling me that Dylan had a hypospadius and undecended testicles. All I could ask was “why?” He still was having a hard time breathing so she took him to the nursery. Mitch went with him. My doctor was finishing up with me and told the nurse to send the placenta to pathology and call the pediatrician. The next few hours are kind of a blur. I had had an epidural and my legs were very numb. I remember my nurse telling me that she had to admit another patient and she seemed to be gone for a very long time. My mom and Mitch kept going back and forth from the nursery. I just layed on my side and cried. These were not happy tears. The pediatrician came in and told me that she wanted to transfer him to another hospital because he had a hole in his right lung and needed to be put on a ventilator so he could breathe easier. She anticipated that he would only need to stay a few days and then asked me his name. I said, “Dylan.” She smiled and said, “well then I am going to call him my little Dyl Pickle” (hence the nickname). After she left, my doctor came back in and said that he would discharge me so that we could follow the ambulance an hour south to San Diego. I said o.k.
My nurse finally came back in – it seemed like it had been hours and asked me if I wanted to go to the nursery to see him before the transport team came. So I wiped my face and got in the wheelchair. I remember wanting Mitch to take lots of pictures because I was so scared that Dylan might not make it (I never told anyone at the time but that was the thought running through my head as I was wheeled down the hall). Then I saw him. He had an oxygen mask on his face and he was in the infant warmer. His color was gray and he had no tone. He did not look like a healthy baby. I remember looking at him and feeling my chest tighten up, it was hard to breathe, I had a huge lump in my throat. It was surreal. I didn’t want to cry in front of the other happy dad next to us watching as his baby got the first bath. I kissed Dylan’s little hands and feet and told him I loved him and then got wheeled back to my room so I could get changed and packed up. The transport team arrived and brought him into my room to say goodbye. He was intubated by now and the transport nurse told me they also noticed a sacral dimple on his back. I think I just nodded and said “oh.” I was in a daze and feeling a lot of pain. My nurse came in gave me some Tylenol with codeine and had me sign the discharge papers and gave me a hug. As Mitch went to get the car all the other nurses came over and hugged me and said it will all be ok. I wanted so much to believe them, but I knew. As we drove to San Diego that night all I though about was that I wanted to go back to a week before when I was still pregnant – everything was ok then, we were happy.
After receiving the WHS diagnosis I thought that I would never be happy again. This was the most horrible syndrome that I had ever read about and I was more scared than I have ever been in my whole life. I have never cried so hard. I tried so hard to put on a happy face for Hailey but really I was dying inside.
When we brought Dylan home from the hospital a friend of mine sent me a card and she wrote, “you will smile again and you will be happy again. I see lots of smiles in your future.” She was right. Dylan is two years old today! I can’t believe it. I honestly wasn’t sure if he was going to make it to this birthday (because of what we were initially told about WHS). Dylan is AMAZING! We all love him so much. When I cry now they are happy tears. Happy tears and lots of smiles because he is doing things that we were told he may never do. Heck, they even told us that he may never know us or recognize us! He proved that prediction wrong when he was six weeks old and looked right at us and gave us a big toothless grin. As I put him to bed tonight I gave him a big hug and kiss and layed him down(as I always do) and he smiled and squealed, then sat straight up (this is the first time he has done this in his crib) and my mom and I said, “we’re going to have to lower that crib mattress.” It’s the little things that you really come to appreciate, most parents probably take that mattress lowering milestone for granted but I certainly don’t. Today was a great day.
7 Responses to Dylan is Two Years Old
Leave a Reply
Donate to wolfhirschhorn.org
subscribe
Contribute Your Story
To share your story, create your LOGIN and sign in once you receive your password via email. After logging in, write your story, upload pictures and publish your story! It's that easy. If you would like to comment on our stories, you can comment without creating a login. Each comment is posted once approved. If you need help, please email us.WHS Growth Chart
In 2007, a WHS growth chart was created. Download the Wolf-Hirschhorn Syndrome Growth Chart here.Most Popular Topics
1st Birthday 2011 Easter Birthday contest results Dentist development Doctor Visits Early Intervention eating family feeding Feeding Tube food Fund Raiser Halloween Halloween 2011 Halloween Contest Holiday Hospital introduction IQ Kidney Transplant kidney ultrasound Magnolia milestones Nayana Parent Profile physical therapy pictures School scooting Seizures Siblings Sitting Position Social Media Special Needs Speech Therapy talking Therapy Top 10 List Unborn Child update video Walking Weight GainSelect Your Story
- Addilynn (2)
- Alexander (9)
- Alexia (2)
- Ali (1)
- Amelia (23)
- Ansel (1)
- Arianna (2)
- Arin Rae (16)
- Ava Lynn (8)
- Ava Ruby (1)
- Bethany (2)
- Blake (3)
- Brett (2)
- Brodie (15)
- Caroline (9)
- Casen (1)
- Cassidy Renee (2)
- Charity (1)
- Charlotte Ellen (1)
- Claire (3)
- Clover (3)
- Contest (19)
- Corrine (1)
- Corwin (2)
- Dakota (1)
- DeLaney (1)
- Deliany (1)
- Denise (3)
- Devin (3)
- Dylan (16)
- Elijah (4)
- Ellye (3)
- Elsa (32)
- Emily Rose (5)
- Emma (7)
- Esme (3)
- Esperanza (2)
- Evan (2)
- Eve (3)
- Evelina (1)
- Evvie (2)
- Featured Stories (14)
- Fiona (4)
- Frank (6)
- Fund Raiser (13)
- Garner (1)
- General Information (23)
- Giveaway (3)
- Grace (5)
- Halloween (28)
- Harry (1)
- Hayden (2)
- Isabella (4)
- Isabella N (6)
- Jaap (1)
- Jada (2)
- Jake (1)
- James Douglas (2)
- Jon York (1)
- Joseph (1)
- Juliana (2)
- Justin (1)
- Karly (4)
- Karson (2)
- Kaylee (13)
- Kayleen (1)
- Kendall (82)
- Kinga (2)
- Leo (2)
- Liam (7)
- Liam John (1)
- Lisa (3)
- Lists (2)
- Lucy (1)
- Madison (7)
- Magnolia (7)
- Marley (2)
- Marshall (1)
- Mason (3)
- Matilda (1)
- McKenzie (6)
- Mia Rose (27)
- Natalie (1)
- Nathan (1)
- Nathaniel (28)
- Nayana (3)
- News (3)
- Norrah (18)
- Olivia (1)
- Olivia Grace (6)
- Olivia Stella (1)
- Paisley (1)
- Parent Profile (2)
- Peyton (4)
- Quinn (2)
- Reese (1)
- Region Gatherings (2)
- Renee (1)
- Rheyn (6)
- Riley (6)
- Rochelle (3)
- Ryley (2)
- Sabrina (10)
- Savannah (1)
- Sergio (2)
- Shadyn (1)
- Social Media (10)
- Sophia (6)
- Talia (2)
- Talon (1)
- Tanner (13)
- Taylor (10)
- Taylor T (3)
- Teejay (4)
- Tommy (2)
- Tyler James (5)
- Tyler Jay (1)
- Unborn Child (7)
- Uncategorized (128)
- Vincent (1)
Google Ads 1
Google Ads 2
Google Ads 3
Wow, Dylan is doing so well. The pictures are great too! Things are so tough at times, but the experiences we have can’t be replaced… He’ll be walking before you know it.
Beautifully written and a very handsome little man! 🙂
What a deeply moving account of your first few days with Dylan, Kirsty. I can relate to so much of your post, and know it can’t have been easy for you to revisit those dark early days. But how things change… Your photos are fantastic and it is a joy to see how your beautiful boy has been proving the medics wrong; right from that first big smile. Happy Birthday Dylan!
Happy Birthday Dylan! He looks so good! I’m very excited the mattress has to be lowered. That is a HUGE milestone- go Dylan!
While reading your story my heart hurt for you but when I got to Dylan’s pics I just cried because he is so beautiful! Stories like this is what I love to read because when you think the world is about to end, it’s really only beginning! I am so glad Dylan is doing great. Happy Birthday Dylan!!
Dylan is beautiful! Your story is so familiar and I am happy you shared it. The beginning is so hard but the end result makes everything worth it!
Kristy, your story made me cry. I felt the pain you described as though it were happening to me all over again, and I felt sad tears fall down my cheeks. But then you described the crib mattress and Dylan sitting up and I cried again…this time happy tears. Dylan inspires me;his beautiful face, his innocent smile, and his happy demeanor always– ALWAYS– remind me that despite my fears, that everything is going to be all right. Happy Birthday, Dylan~ I celebrate you on this day and every day!! xo