The Chance to Live

Now that you know Dillon’s medical background, let’s get to the stuff that matters.

They always tell you that you don’t know what love is until you have a kid. Well, they’re right. I loved Dillon as soon as I saw him on that ultrasound. And as crazy as this sounds, after he was diagnosed with SB, I felt even more connected to him. I think it was because I felt like he needed extra love to make him feel better. I read a story once about a woman who had a little girl with down syndrome. They did not learn about her extra chromosome until after she was born. When the little girl arrived, her mother could tell by her features that she had down syndrome. She said that the first time she looked at her baby it was as if her little girl was saying, “Love me! I may be different, but just love me, please.” And I realized then that I don’t want Dillon to ever feel that way, I want him to know that he is loved.

I know I’m backtracking here but I just want to say that I had a very positive and upbeat obstetrician, Dr. Wendel, and I wish every OB could be like him when it comes to things like spina bifida. A lot of obstetricians paint a horrible picture when giving a prenatal diagnosis. I remember one of my appointments I had with Dr. Wendel before having Dillon and he just seemed so happy, he acted as if spina bifida was just one of Dillon’s physical features. He never wasted his time by telling me that Dillon wouldn’t have a chance in this world. He never pushed for termination, in fact he didn’t even mention termination (that was the genetics counselor). I remember him saying that Dillon’s ventricles were slightly dilated, but that was normal for children with spina bifida. He informed me about Dillon in a positive way and I really appreciated that. And even though the genetics counselor asked if we had considered termination, she smiled after Lance and I said that we weren’t considering it. I have heard stories about doctors actually questioning their patient’s decision not to terminate. Ridiculous.

I think a lot of terminations should be blamed on how doctors present information to their patient. No offense to doctors, but they only know what that ultrasound tells them. They don’t know what God has in mind. They don’t know that these babies will sparkle and shine, no matter what their diagnosis (even if it’s just for a little while). I’m sorry if this next part is offensive to you, but this is my blog and I’m going to share my opinion. Even if your child is given a death sentence, is it really your choice on whether or not they’re at least given the chance to live? I’ve heard countless stories about women whose children survived even after doctors said they never would. I mean, doctors are HUMANS, they are not psychics. Even with the greatest technology, those machines and tests do not account for miracles. You will never regret giving your child, at the very least, a chance to feel your touch, to feel you holding him/her in your arms, even if it’s only for a second.

And who knows, your child just might find the cure for cancer one day, or do something else amazing that would change this world for the better, but if you abort him/her, then there is no chance.

Anyway, those are my thoughts for the day. I’ll leave you on a happy note.. or should I say happy picture:

It's moments like these that make me wish babies had a fully developed long-term memory.

It’s moments like these that make me wish babies had a fully developed long-term memory.

The Shunt and Shots, Shots, Shots!

We brought our little pumpkin home and it was a glorious day.

Lance stayed up and watched Dillon while I slept (he had to be up all night for work anyway, he works nights).

He told me he was so nervous, but he did a great job. I was too tired to even worry about anything.

Daddy changing Dillon for the first time. Yeah he had to be on his stomach and so we put his diapers on backwards because it was easier.

Daddy changing Dillon for the first time. Yeah he had to be on his stomach and we put his diapers on backwards because it was easier.

Me and Dillon. I think I was pretty exhausted in this picture.

Me and Dillon. I think I was pretty exhausted in this picture.

The bad thing about coming home shunt-free? Watching for worsening of the symptoms caused by hydrocephalus. His head kept increasing in size, but Dr. Ocal said that head circumference was not important, as it did not indicate whether his ventricles were increasing. We kept an eye on his temperature, measured his head every day, checked to see if he could look up, kept track of how much he slept, and noted any time he spit up. So aside from all the normal newborn worries, we had all of that other stuff to worry about. To all the new moms out there: You know how you have that overwhelming feeling to check on your kid every five minutes while they’re asleep to see if they’re breathing? Well because of his condition, that feeling was amplified. However, I kept in mind that God had an eye on him too, so that kind of pushed a little bit of my worry to the back burner.

His first appointment for a head ultrasound was scheduled a week after he came home. My lovely sister went with me, since Lance, unfortunately, had to work :(. I had to have someone with me because Dillon was in something called a car bed and someone has to be in the backseat with him (thanks Amber, you’re a life saver).

After his head ultrasound, Dr. Ocal came in and talked to us. She was impressed with his leg movement and said that his ventricles were stable and that he’d be fine for another two weeks. I just love Dr. Ocal, she’s a very positive person, and I assume that’s probably a rare quality for a neurosurgeon. I don’t know why, but I really look up to her, I guess because she basically saved my son’s life. So they scheduled another appointment two weeks later. I had a feeling this appointment would be THE ONE. And it was.

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Of course it was! Dillon’s head was MASSIVE, he was ready for that shunt. Poor kid.

Thankfully Lance was able to go with me this time :). They admitted Dillon that day and I stayed overnight with him. I was unable to feed him after midnight, boy that was FUN. It actually wasn’t so bad. He cried for about 20 minutes and then fell back to sleep. His surgery was at 7:30am the next day. His surgery was over before we knew it and he was back in my arms and eating like he hadn’t eaten in years (I imagine hours are probably like years to babies).

We were sent back up to our room and they kept him overnight for observation.

Look at this beautiful child. His ear was itching, obviously.

Look at this beautiful child. His ear was itching, obviously.

Recovering from a surgery isn't easy. Look at that face. He even looks extra sad in black and white.

Recovering from a surgery isn’t easy. Look at that face. He even looks extra sad in black and white.

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This is his head now. It went down quite a bit and is no longer increasing, giving his body a chance to catch up to it. He loves his daddy so much. 🙂

So far we have had no problems with his shunt and I really hope it stays that way!

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Just thought I’d give you guys an update on today:

Dillon had a check-up today with his pediatrician.

Ready for battle. On his way to see Dr. Payne. She really is a great pediatrician.

Ready for battle. On his way to see Dr. Payne. She really is a great pediatrician.

He had his 2-month shots.

He did not like them, at all.

I have never heard him scream like that. He sounded like a very angry banshee.

It is pretty heartbreaking, but I knew the shots were for his own good.

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Battle wounds.

He hasn’t been too fussy since having his shots, though I can tell a bit of a difference in how he has been acting today. Hopefully the nap he’s taking right now will make him feel better.

By the way, he weighs 12 pounds and 9 ounces now, and he’s 24 inches long. He may need to start working out more, he’s getting a little chubby, just kidding. He’s my little marshmallow and I love him.

Alright, I have to go be a housewife. So that’s it for now!

The NICU

At 39 weeks and 1 day, on the day I was scheduled (I never went into labor), I had Dillon via c-section in Little Rock and then my 8 pounds of love went straight to the NICU at Arkansas Children’s Hospital (next door) after he was born. I saw him for maybe 30 seconds before they took him away, and then it was another couple of days before I could see him again. I was on some really good pain medicine so I don’t remember much of actually being in the hospital, other than my sister having to help me get up just so I could go pee (God bless you Meagan), talk about losing all dignity.

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This is Dr. Ocal, Dillon’s neurosurgeon. She’s a genius.

Dillon had his surgery before I recovered from my c-section.

He pulled through surgery like a champ.

Rewind: They told me Dillon would likely be in a wheelchair. That he probably wouldn’t move his legs. That his feet would likely be clubbed. That he’d probably need to be catheterized. That he’d probably need a shunt. However, I have to give some of the SB team props, they do give you some positives and tell you how every SB kid is different. But of course they’re different, we’re all different, if we weren’t, this world would be so boring.

We prayed so much for this child. And we asked many people to pray for him. Lance and I mostly prayed for the ability to handle whatever God had in store for us. I prayed that God would help us to be the best parents that we could be.

Fast-forward: Dillon is definitely different, amazingly different. I like that word.. different, because who wants to be like everyone else? He has impressive leg movement (here’s proof), he has not needed to be catheterized (I know it’s very likely that it won’t stay that way, but everything about Dillon that was “likely” did not hold true). His feet are not clubbed. He even moves his ankles and toes.

What Dillon looked like the first time I actually got to spend some time with him.

Dillon in the NICU.

Dillon's back closure scar. It's pretty awesome.

Dillon’s back closure scar. It’s pretty awesome. I just realized from this picture that it looks like an ‘L’. He’s just representing his daddy.

He developed a strong bond with this pacifier. As you can see he's trying to keep it in his mouth by holding that little blanket against it (completely intentional).

He developed a strong bond with this pacifier. As you can see he’s trying to keep it in his mouth by holding that little blanket against it (completely intentional). Look at those baby biceps! (AKA arm rolls)

Even 'til this day he sleeps with his pacifier, in his arms, like a stuffed animal.

Even ’til this day he sleeps with his pacifier, in his arms, like a stuffed animal.

We spent 9 days in the NICU. It was somewhat of a blessing, as it gave us a few days to kind of learn things about him, his eating and sleeping patterns, and have help from the nurses. I don’t know why but I’ve never hated hospitals like some people do, actually I kind of like them.

Dillon had a team of doctors and nurses running all sorts of tests on him and his tests always came back with positive results.

Dillon was doing so well. We got to go home on the 9th day, shunt-free and catheter-free, and our nurse told us that was a record for a baby with spina bifida.

But now we had to watch for symptoms of his hydrocephalus progressing..

My child needs food, I feel like he’s going to get up and get it himself any minute now.

So that’s it for now.

The Beginning

This is going to be short because Dillon needs to take a bath and go to bed. So I am just going to introduce everyone and then maybe later tonight I’ll get to write more.

This is Dillon. Doesn’t he seem like such a happy baby?

He really is most of the time.

He really is most of the time.

This is my fiance and Dillon's daddy, Lance. :) Love him.

This is Dillon’s daddy, Lance.

And this is me.

And this is me.

This blog is going to be about our every day life with our little miracle, Dillon. I’ll explain more later, but right now, mommy duty calls!

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Okay, I’m back!

Now that you have met everyone, I’d like to share my story from the beginning and I’ll try to make it as painless as possible and not forever long (even though it’s probably going to be).

I found out I was pregnant on June 10, 2012. Lance and I weren’t exactly ready for a child yet, but things happen, and I wouldn’t go back and change it, even if I could. We were excited, a little nervous, but mostly excited (I think Lance was a little more nervous than I was). We had a check-up at 8 weeks. Dillon looked just like a little gummy bear and I immediately loved my little gummy bear.

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See, gummy bear.

At 16 weeks we found out we were having a boy!

Lance’s thoughts: Yay footbal!

I’m pretty sure all I was thinking about was how I already knew it was a boy. I had several dreams about it. Sometimes I think God communicates through your dreams every now and then. You probably think I’m weird for that, don’t you?

At my next appointment I had the option to let them draw blood and see if there was a chance Dillon could have down syndrome or any birth defects. So I said sure why not, I didn’t really think anything of it.

I got a call about a week later and found out my blood contained high levels of AFP, which meant it was possible Dillon could have a neural tube defect. They scheduled me for a second level ultrasound. No specifics were given and it turns out there are several types of neural tube defects, so I sat wondering which one he could possibly have. I did my research (don’t Google anencephaly, just don’t). I research EVERYTHING! Spina Bifida stuck out, but I tried to forget everything until I would get to have my second level ultrasound A WHOLE THREE WEEKS LATER. I was about to go insane!

At 21 weeks I had my second level ultrasound. They performed the ultrasound in the town that I live in and then sent the ultrasound pictures to a doctor in Little Rock (2 hours away). The doctor communicated basically via webcam to tell me the results. I remember his exact words, but everything after that is a blur. “Most of the time those blood tests are wrong. I hate to have to tell you this way, instead of in person, but the blood test was right, your son has Spina Bifida.”

My heart dropped into my stomach. I didn’t cry, I just stared at the screen and suddenly felt like I was dreaming. I went into full daze mode and just nodded my head robotically at everything else the doctor had to say, even though I heard nothing.

The genetics counselor then appeared on screen, but I was inside my mind, not listening to anyone else, talking to myself. My train of thought: Spina Bifida, will Dillon be ok? Will he love his life with this diagnosis? Will he be in a wheelchair? Will he get to play football? Will we be able to afford this? I also had some positive thoughts, that I’d love this kid no matter what. And as soon as that thought entered my mind I heard the genetics counselor say something about still having the option to terminate the pregnancy and asked if we had considered it. Then came the tears. I am absolutely against abortion, so, even though it’s probably required for them to ask, I was offended by that question. Lance and I both agreed that we hadn’t even considered it and that we wouldn’t.

I do remember a few details about Dillon’s lesion. It was a myelomeningocele at L1 or L2 (they weren’t sure). That’s fairly high and the higher the lesion usually means the worse the paralysis. On top of that, the ventricles in his brain already appeared slightly dilated which indicated hydrocephalus (something that comes hand in hand with Spina Bifida).

I cried for a day and then I knew God was on my side and that sure, maybe Dillon has Spina Bifida, but that won’t stop him from being awesome.

The rest of my pregnancy was pretty normal. I was really anticipating his arrival.

At 2:22PM on February 12, 2013, my perfect child was born. And he was perfect in every way. God created this child and he is everything he should be. I’m sorry this next picture is pretty gruesome (I hope you weren’t eating). I have another picture of it, but I don’t want anyone passing out.

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On his back is the cyst that ruptured during delivery.

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My beautiful child, in all his naked glory. This is one of a few of his birth pictures where he’s not showing you his goods.

I’ll never forget that day, it was the happiest day of my life.

It’s getting late guys. I’m getting sleepy.

So that’s it for now, but I’ll be back tomorrow to tell you more!