This story, written by Dylan's Mother ...
was actually written while she
was pregnant with Dylan.
Dylan is now 6 months old and
getting so handsome!
Here is Dylan's story:
We found out that we were pregnant on July 26, 2010. I couldn't believe that I was actually pregnant! There was a little human being growing inside of me! Wow! I was going to be a Mom!
I have 4 nieces and nephews, and have seen the love and the bonds between my sister and her 4 kids, so I was supper happy to be able to have the chance to experience that. I was also quite nervous, because both my mom and my sister do not have a history of having "easy" pregnancies, and I was nervous that I was going to follow in their footsteps. Turns out that my nervousness was validated at about 8 weeks when I delveloped Hyperemisis, extreme morning sickness. I was admitted to the hospital at one point for severe dehydration, and was pretty much sick 24/7 for the first 4.5 months in which time, I lost about 25 pounds. Although losing the weight was not done the "healthy" way, it turned out to be a good thing for me, because I also have Hip Dysplasia, yeah, you know that thing that dogs get?? Yes, Humans get it too! :) So the extra weight loss, means less pressure on my hips, and that allowed me to keep my pain level at a minimum through the last 7 months.
At 15 weeks, we went and had one of those 3D/4D ultrasounds done in hopes of being able to tell the sex of our baby early. We were too excited to wait for the 20 week Ultrasound. It was amazing...... we found out we were having a little BOY!!! Yay!! We named him Dylan James Perry, and went out the very next day and bought him his first little outfit :) We were so excited!
At 15 weeks, we went and had one of those 3D/4D ultrasounds done in hopes of being able to tell the sex of our baby early. We were too excited to wait for the 20 week Ultrasound. It was amazing...... we found out we were having a little BOY!!! Yay!! We named him Dylan James Perry, and went out the very next day and bought him his first little outfit :) We were so excited!
Next up was the 20 week ultrasound in which I was told by the Sonographer doing Dylan's scan, that everything looked good. I was so happy... I was nearly over my Hyperemesis, starting to feel a little better, and thought that everything was going to be smooth sailing from then on. I was wrong. The next week after our 20 week ultrasound we had an appointment with my OB, nothing was mentioned about the ultrasound, and I didn't think to ask any questions, because the Sonographer told me everything looked good, and I figured that if something had been wrong, that my OB would have said something. On our way out of the appointment and to the front desk to schedule our next appointment, my OB turns to me and casually says " Oh, by the way, they found a heart arrythmia during your ultrasound last week, so I'm referring you to a Perinatologist and for another more detailed Ultrasound " and turned around and walked away. Wait..... What?? You're kidding me right? He didn't just say that to us, and then turn around and walk away did he? Yes... Yes he did. Due to problems with paperwork, and insurance and incompetent office workers, we were not able to get our appointment for the Echo that we had to have on our babies heart until I was 24 weeks....... thats FOUR weeks later... FOUR weeks of not knowing and worrying about what was going on.
Naturally I was worried and freaked out and researched heart arrhythmia's the moment I got home. I was somewhat comforted in the fact that most all the information I looked up said that most heart arrhythmia's are harmless and usually take care of themselves either before birth or shortly after. I kept telling myself, that was all it was, just a little irregular heart beat thats going to correct itself and everything will be ok, I was wrong. My little 1 year old nephew was born with a couple of holes in his heart, he has 2 ASD's and 1 VSD ....... it was very scary for awhile, not knowing if he was going to need surgery or if the holes would close on their own, the doctors kept an eye on him for a year and gave him medicine and luckily we were just told a few months ago that the holes have closed enough to where it is not effecting his little heart and it won't effect him at all. So you see, I do have a little experience of the heart ache and the worry that comes with having or knowing a child and loved one with a heart condition, but I was NOT prepared for the news that I got from the cardiologist. On December 6th, I went into the echo being prepared for it to be nothing or maybe something "minor" that could be fixed.......... and I came out with the diagnosis of Hypoplastic Left Heart Syndrome (HLHS). After the echo, the doctor wiped off my belly and had me sit up, he sat down in front of me and started drawing a picture of a "normal" heart for me...... right away, I knew something was wrong and busted out in tears.......... he continued to draw the normal heart, and then he drew me the heart of my unborn baby boy. I was devastated, in shock, scared, angry, sad, every emotion you could think of was flowing through my head. I didn't ask many questions because i couldn't open my mouth without the tears getting in my way...... but I do remember my first question.... " Was this caused by something I did?" ..... When you're told something is wrong with your baby, you automatically feel like it's your fault...... despite the doctor telling me it was nothing I did or didnt do, and there was nothing that I could have done to prevent this, that it just happens, I still felt guilty. I felt like I have let my little guy down..... I'm supposed to be able to protect him, he's growing inside of me, and i'm supposed to make sure that he's healthy and happy. I left that appointment hardly being able to walk, I went straight to the bathroom on the way out and shut the door and just cried and cried. As soon as I was able to pull myself together I walked to my car, not knowing how I was going to tell my boyfriend Joe what was going on with our baby boy. Joe was at work and couldn't attend the ultrasound, so I had to call him at work to let him know what was going on once I got home.
Naturally I was worried and freaked out and researched heart arrhythmia's the moment I got home. I was somewhat comforted in the fact that most all the information I looked up said that most heart arrhythmia's are harmless and usually take care of themselves either before birth or shortly after. I kept telling myself, that was all it was, just a little irregular heart beat thats going to correct itself and everything will be ok, I was wrong. My little 1 year old nephew was born with a couple of holes in his heart, he has 2 ASD's and 1 VSD ....... it was very scary for awhile, not knowing if he was going to need surgery or if the holes would close on their own, the doctors kept an eye on him for a year and gave him medicine and luckily we were just told a few months ago that the holes have closed enough to where it is not effecting his little heart and it won't effect him at all. So you see, I do have a little experience of the heart ache and the worry that comes with having or knowing a child and loved one with a heart condition, but I was NOT prepared for the news that I got from the cardiologist. On December 6th, I went into the echo being prepared for it to be nothing or maybe something "minor" that could be fixed.......... and I came out with the diagnosis of Hypoplastic Left Heart Syndrome (HLHS). After the echo, the doctor wiped off my belly and had me sit up, he sat down in front of me and started drawing a picture of a "normal" heart for me...... right away, I knew something was wrong and busted out in tears.......... he continued to draw the normal heart, and then he drew me the heart of my unborn baby boy. I was devastated, in shock, scared, angry, sad, every emotion you could think of was flowing through my head. I didn't ask many questions because i couldn't open my mouth without the tears getting in my way...... but I do remember my first question.... " Was this caused by something I did?" ..... When you're told something is wrong with your baby, you automatically feel like it's your fault...... despite the doctor telling me it was nothing I did or didnt do, and there was nothing that I could have done to prevent this, that it just happens, I still felt guilty. I felt like I have let my little guy down..... I'm supposed to be able to protect him, he's growing inside of me, and i'm supposed to make sure that he's healthy and happy. I left that appointment hardly being able to walk, I went straight to the bathroom on the way out and shut the door and just cried and cried. As soon as I was able to pull myself together I walked to my car, not knowing how I was going to tell my boyfriend Joe what was going on with our baby boy. Joe was at work and couldn't attend the ultrasound, so I had to call him at work to let him know what was going on once I got home.
I couldn't tell him much, because I wasn't told much, or maybe I was, but I wasn't able to take it all in at the time. All I heard were the words " abnormal, worst heart defect you can have, not fixable, fatal, open heart surgeries, heart transplant, etc" and I just shut down, everything else went in one ear, out the other.
For those of you who don't know what HLHS is :
The problem develops before birth when there is not enough growth of the left ventricle and other structures, including the:
* Aorta -- the blood vessel that carries oxygen-rich blood from the left ventricle to the entire body
* Entrance and exit of the ventricle
* Mitral and aortic valves
This causes the left ventricle and aorta to be incompletely developed, or hypoplastic. In most cases, the left ventricle and aorta are much smaller than normal.
In patients with this condition, the left side of the heart is unable to send enough blood to the body. As a result, the right side of the heart must maintain the circulation for both the lungs and the body. The right ventricle can support the circulation to both the lungs and the body for a while, but this extra workload eventually causes the right side of the heart to fail.
There are a series of 3 open heart surgeries that basically re-route the plumbing and allow Dylan to be able to function with half of his heart. It is not a fix, but a band-aid for his heart. The surgeries have only been around since the 1980's, so the oldest known survivors of HLHS are in their mid to late 20's at this time. The long term outlook is unknown, but with the many advances in the surgeries and medical technology, Dylan has a good chance of surviving these surgeries, and living a long and healthy life. Dylan will need to have his first open heart surgery within the first week of his life, the second one between 3 and 4 months, and then the third one by the time he's 3.
It has only only been 2 months since we found out about our babies heart condition, so we are still adjusting and taking things in and preparing ourselves for what is to come. We have an appointment with his Surgeon's and Cardiologist next week to go over everything that is going to happen once he is born, and what we can and can't expect to happen. It's been really hard on us and our families. For about the first month, I went through so many different emotions, I was grieving the "loss" of my "healthy" baby........... I tried to prepare myself for the worst, I tried to disconnect myself from the little miracle that I have growing inside of me, thinking that it would be easier to deal with when he's born if he doesn't make it. The smile and the happy feeling I used to get from feeling him move and kick inside of me, turned into tears and sadness. To make matters worse, I started having pre-term labor contractions 2 days after the diagnosis and was admitted into the hospital for conractions and a short cervix with funneling. So for the last two months since his diagnosis, I have been on strict bed rest, and admitted to the hospital another two times.
For those of you who don't know what HLHS is :
The problem develops before birth when there is not enough growth of the left ventricle and other structures, including the:
* Aorta -- the blood vessel that carries oxygen-rich blood from the left ventricle to the entire body
* Entrance and exit of the ventricle
* Mitral and aortic valves
This causes the left ventricle and aorta to be incompletely developed, or hypoplastic. In most cases, the left ventricle and aorta are much smaller than normal.
In patients with this condition, the left side of the heart is unable to send enough blood to the body. As a result, the right side of the heart must maintain the circulation for both the lungs and the body. The right ventricle can support the circulation to both the lungs and the body for a while, but this extra workload eventually causes the right side of the heart to fail.
There are a series of 3 open heart surgeries that basically re-route the plumbing and allow Dylan to be able to function with half of his heart. It is not a fix, but a band-aid for his heart. The surgeries have only been around since the 1980's, so the oldest known survivors of HLHS are in their mid to late 20's at this time. The long term outlook is unknown, but with the many advances in the surgeries and medical technology, Dylan has a good chance of surviving these surgeries, and living a long and healthy life. Dylan will need to have his first open heart surgery within the first week of his life, the second one between 3 and 4 months, and then the third one by the time he's 3.
It has only only been 2 months since we found out about our babies heart condition, so we are still adjusting and taking things in and preparing ourselves for what is to come. We have an appointment with his Surgeon's and Cardiologist next week to go over everything that is going to happen once he is born, and what we can and can't expect to happen. It's been really hard on us and our families. For about the first month, I went through so many different emotions, I was grieving the "loss" of my "healthy" baby........... I tried to prepare myself for the worst, I tried to disconnect myself from the little miracle that I have growing inside of me, thinking that it would be easier to deal with when he's born if he doesn't make it. The smile and the happy feeling I used to get from feeling him move and kick inside of me, turned into tears and sadness. To make matters worse, I started having pre-term labor contractions 2 days after the diagnosis and was admitted into the hospital for conractions and a short cervix with funneling. So for the last two months since his diagnosis, I have been on strict bed rest, and admitted to the hospital another two times.
Why was this happening? Why was my son only given half of his heart, and why was he trying to come NOW? I was only 24 weeks when the contractions started...... if Dylan was born at that time, he would have no chance at surviving. I was depressed, I felt defeated, I was giving up. I spent the next couple of weeks in bed with nothing to do except to lay there feeling him move around inside and cry and cry and cry. I'm not really sure when, or why, or what happened to make me snap out of it, but I did! I have come a long way in the last month, and I am ready to fight. I guess I just needed that time to be sad, and angry, and to be selfish and to feel sorry for myself. I finally realized that I can't expect my son to fight for his life, if I've already given up. He's feeling what I'm feeling right now, and I need to teach him how to be strong so that he's able to fight when he's born. He needs to know how much I love him and how I'll be by his side the entire time fighting right along with him. I am currently 32 weeks, and still at home on bed rest, so I've managed to keep him safe inside for this long, only 8 more weeks to go.
I couldn't have made it this far and this long without all of the support I have from Joe, and my family and friends, and from all of the Heart Mom's that I have met along the way during this journey so far. I have no idea what is going to happen, or where this journey is going to take us, but I do know that we are having a precious little miracle baby boy, and I already love him with all my heart. Every second, minute, hour, and day that we have him with us will be cherished.
I couldn't have made it this far and this long without all of the support I have from Joe, and my family and friends, and from all of the Heart Mom's that I have met along the way during this journey so far. I have no idea what is going to happen, or where this journey is going to take us, but I do know that we are having a precious little miracle baby boy, and I already love him with all my heart. Every second, minute, hour, and day that we have him with us will be cherished.
Mommy loves you Dylan, and I'll be waiting right here, ready to fight right by your side when its time, but for now, continue to stay inside where you're safe, and continue to grow and gain your strength. I love you!
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