The Overprotective Mother

Dillon has been kind of fussy today and he’s hardly ever fussy, which brings me to.. teething? Maybe. Gas? Based on his grunts, sounds like it. Shunt malfunction? No other symptoms, so I’m betting.. no.

I know I’m OBSESSED with my kid. I’m not being sarcastic, I really am obsessed. I am sure everyone probably already knows this due to status updates and countless pictures on my Facebook. My mind is on this kid 24/7 (even while I’m sleeping). Would it be this way if it weren’t for his medical conditions? Probably not, but I really don’t know, considering he is my first child.

I am really blessed to have Dillon. He is so easy to take care of, he’s hardly ever fussy, he’s a good napper, and at a little over two months old he started consistently sleeping from 8PM to about 7AM.

My whole world in one picture. <3

My whole world in one picture. ❤

I am definitely a momma bear when it comes to Dillon. I am generally a very laid back person, but if anyone has anything to say or does anything with my child that I don’t like, well, let’s just say you will see the dark side of Heather.

Being a mom has really changed me and I’ve only been one for three and a half months! I love babies now.. before I just thought they were kind of lazy and whiny. I’ve discovered a new love.. yes, mommy love is completely different from any other love, it’s much greater. I use baby talk sometimes.. I am a little ashamed when I use it, and I don’t even know why I use it, because Dillon thinks it’s hilarious when I use my regular voice. I have developed a sixth sense.. I can tell you what’s wrong with my kid just by his cry. And, I don’t really care about myself as much anymore.. Dillon is my #1 ( he’s tied with his daddy).

*Initiate Dillon photo montage*

He really can't get enough of his fingers.

He really can’t get enough of his fingers.

He's a flasher. His belly is pretty cute though.

He’s a flasher. His belly is pretty cute though.

He thinks he's a big boy.

He thinks he’s a big boy.

Heaven forbid I try to take his pacifier.

Heaven forbid I try to take his pacifier.

I might be a little overprotective for this, but a part of me doesn’t trust anyone to keep Dillon overnight while I’m not there (aside from Lance). At least not at this age and definitely not while he’s still exclusively getting breast milk (even if he wasn’t, I’d like to wait until he’s a year old). I am with Dillon 24/7, I know everything about him, I know when something isn’t right. I know how he acts when he has gas, or when he’s hungry, or when he’s sleepy, or when he needs his diaper changed. I can also tell when it’s not any of those “normal” baby problems, when it’s something serious. And I know Dillon’s grandparents have raised wonderful children (obviously) and I know all of his aunts are perfectly capable of taking care of a baby, but I just can’t be away from him overnight, not yet, not for a while, and definitely not since he does have a couple of medical issues. I am a very forgiving person, but if anything happened to Dillon while he was in the hands of someone else, I’d never be able to forgive them, ever, literally never. I don’t want to put that kind of pressure on someone while Dillon is still in such a vulnerable state (A.K.A. a baby). So, I am sorry, but keeping him overnight, without me, before he is one? The answer is always going to be no. If that makes me overprotective, then I guess I am overprotective.

Okay, now a quick update on some technical stuff: Dillon will have an appointment on September 26th. As of today he is doing very well. He has some slight issues with head control, he let’s his head fall back occasionally, due to his hydrocephalus, but (as per advice from his physical therapist) we’re working on it and he’s getting better. He does not bear all of his weight on his legs yet (they say this is a 4-month milestone and he’s 3 and a half months). The fact that he bears any weight at all (and he does hold quite a bit) is a miracle!

I’ll end this post on a picture of the cutest baby on earth.

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He may have little hands, but those little hands hold my whole heart. ❤

Dillon will be waking up from his nap in about 15 minutes, so until next time! Thanks for reading. 🙂

The Daddy Post

Today’s post is going to be a guest post from Lance. This might be a bit long because Lance wants to tell his side of the story, and he talks a lot.

Lance:

When I found out Heather was pregnant, I had never felt so scared and nervous in my life. I didn’t know if I was ready to be a dad. At 16 weeks we went to find out if it was a boy or a girl. I didn’t care what the sex was, I could see the benefits of either; if it was a boy, we’d get to go hunting and fishing and play football, ya know, man stuff, and if it was a girl, she would be a daddy’s girl. We found out it was a boy and I was super excited and told everybody we were gonna have a baby to carry on the Skinner name.

The pregnancy went on how I figured any normal pregnancy would, until Heather opted to get a blood test. We then found out that Dillon could possibly have a neural tube defect. We talked to each other and to our family and friends about it and most of them told us to pray. The doctor told us that the blood tests are often not very accurate and that he was 99% sure everything was fine, but it was going to be three weeks before Heather could get a 2nd level ultrasound. So for three weeks we prayed that Dillon would be healthy and that nothing would be wrong.

At our appointment, we sat through a very long ultrasound and although everything looked normal to me, the doctor then came on the screen and told us that Dillon had spina bifida and that the ventricles in his brain were slightly dilated. At first I didn’t really know what this meant and then he said that the higher the lesion the worse the paralysis and I was thinking, “Paralysis? Is my kid going to be paralyzed?” And it felt like my world was crumbling around me. I went from thinking about all of the sports he’d get to play, to wondering if he’d even be able to walk. I started to tear up and choked back tears to ask the doctor if he would be able to walk and he said that some are able to walk with assistance but some are in wheelchairs. Then the genetics counselor appeared on the screen. At that time I think Heather and I were both in shock, because we both were just staring at the screen not really reacting to anything. Then the genetics counselor said we still had the option to terminate the pregnancy and asked if we had considered it and we both said no without any hesitation. On the ride home, Heather and I didn’t say anything to each other, all I was thinking was, “Why is this happening to us? What did we do?” That night I had to go to work and I was just going through the motions, trying not to feel anything. It was hard telling people about it, because having to tell the story over and over was as if I was reliving the moment when the doctor told us about it. We talked to family and friends and they told us to pray and that God was going to heal Dillon. Heather and I talked about it and although we still prayed for healing we also decided that if this was God’s will, we would pray that he’d give us the strength and the knowledge to handle it.

After we found out about all of this, the pregnancy went by pretty fast, although given the situation, it put ten times more worry in my mind. I thought I was scared before, but now that feeling was magnified.

The night before we had Dillon, we stayed in a hotel in Little Rock, because we had to be at UAMS at 7AM the next morning. After waiting around in the hospital forever, I was ready to get this over with. They finally took Heather back to the OR at around 1:30PM. As they were prepping Heather for her c-section, I had to sit out in the hallway and wait for them to bring me in. Once I got in there it wasn’t too much longer before I heard my baby boy’s first cry. They rushed him out of the OR and into the stabilizing room and then called me over there to see him. When I got there and saw him laying on his back, I knew that the cyst on his back had ruptured during delivery. When I saw him, I was overwhelmed with emotions, mostly excited, but also nervous, thinking, “Wow, that’s mine, that’s my boy.” I never realized I could love someone so much who I had known for only a short time. They had to prep him to be transported to Children’s as Heather and I waited in the recovery room. They brought him in before they took him over to Children’s so Heather could see him. I was so excited for Heather to get to see him, but she only got to see him for about 30 seconds and then they were off to Children’s.

When I got to Children’s they wouldn’t let me back to see Dillon without Heather’s consent, because we aren’t married. It took everything I had not to turn into the Hulk when the receptionist told me I couldn’t go back to see him until they called Heather. When I finally got back there to see him, the fact that he had spina bifida didn’t even matter, he was perfect. He was the most beautiful baby I had ever seen. The first couple of nights were difficult because Heather was at UAMS and Dillon was at Children’s. Dillon had his back closure surgery the day after he was born. They said they had to sacrifice some nerves in his back, but they were unable to tell if they were nerves that had already been damaged. The surgery went well. Afterward I was in the NICU with him almost 24/7, but it was hard because Heather had not got to be with him yet. On the third day Heather finally got to see him, but she had to take it easy and Children’s is a very big hospital, so I had the privilege of pushing her around in a wheelchair as she recovered from her c-section. I was able to take off work for 2 days so I could stay at Children’s with Dillon, but I ended up getting sick and was not allowed back in the NICU. I had to get a hotel since I couldn’t even be in the waiting room and that was the worst feeling not being able to be with my fiance and my baby boy. I got over my cold within a couple of days and eventually got to see him again. Even though Dillon was in the NICU, I was still thankful, because a lot of the babies in there were in a much worse shape than him, and I started to realize that it wasn’t as bad as it could have been. I had to go back home for work and that’s a feeling I wouldn’t wish on my worst enemy. After working all night I drove back to Little Rock to see my boy.

On the 9th day we were discharged! He couldn’t be on his back for six weeks so we had to change his diaper with him laying on his stomach. Three weeks later, Dillon needed to have a shunt placed to drain the fluid off of his brain. This shunt would be a lifetime commitment.

So far, he has proven the doctors wrong. He has good leg movement all the way down to his feet. With the shunt I figured he would not be able to play sports and I really didn’t want him to because I was afraid he’d get hit in the head and it would cause his shunt to malfunction and he’d have to get a revision. I just recently looked up if kids with shunts could play sports, they say it’s really up to the parents and to talk to his neurosurgeon about it. I’ve decided that I’m not gonna hold him back from anything, if he wants to do it, then I will support him.

It’s amazing how rapidly your life changes when you have a kid. All of a sudden you have this other person who you’d fight for and die for in a heartbeat if it came to it. Heather and I have already been through many great and some not so great adventures with him and we have many more (hopefully great) adventures to come. I pray that God gives me the knowledge and patience to raise him to be kindhearted and respectful, but to also teach him how to take up for himself and to never give up on anything, to realize that he can accomplish anything as long as he has God in his heart.

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I told you it was going to be long, lol. Awww, but I love him. ❤ I still can’t find that letter Lance wrote to Dillon before he was born, but the search is not over! So stay tuned!

The Letters

I know, it’s Tuesday, and I’m updating. Not Friday, like I promised, but I’m sure no one will be upset that I’m posting a few days early!

I am praying for those families in Oklahoma and I hope you are too. I can’t imagine ever losing a child. I wouldn’t be able to go on in this world if anything happened to Dillon. Lance and I were pretty sure a similar storm system was going to tear down our apartment today. We were right in it’s path in northeast Texas, but we were lucky, we just got some strong wind and a bit of rain. We took precautions anyway. A second floor apartment is really not safe in bad weather, so we headed to my sister Meagan’s house just in case. I find it funny that my “emergency” bag was Dillon’s diaper bag and it consisted of diapers, Dillon’s baby books, his birth/newborn pictures, his medical information binder, and the video camera. I also grabbed my laptop. I guess you can see what I really care about, lol. Who cares if I don’t have any clothes though, all of my Dillon memorabilia is priceless to me!

When we got back home I decided to do some updating in his baby books and then I came across a letter Lance wrote to Dillon while Dillon was in the NICU.

I seriously don’t cry in front of people, hardly ever. I remember not wanting to read it again until I was in a less emotional state, because after I read it the first time I teared up. This is the letter, word for word. He does not care about grammar.

“It’s crazy how you can love someone so much that you just met. Someone you’d do anything for. That’s the way I felt when I first met you. I got to spend a couple of days with you while you was in NICU. But now I got sick and can’t come back to see you because of all the babies back there and I don’t wanna get you sick. It’s one of the worst feelings in the world not getting to come see you when you’re so close. I had to leave you at the hospital until I get better. It makes me wanna cry. You and your mother are everything to me. I hope you’ll never have to feel the pain of leaving your loved one at the hospital. I hope I can raise you with respect and love like my parents raised me and your mother’s parents raised her. I love you so much Dillon I hope I get to see you raise your kids one day. Love, Daddy 2-15-2013”

<3<3<3<3<3<3

<3<3<3<3<3<3

I forgot about him getting a cold and not being allowed to go into the NICU. I was really sad because I know how much he wanted to be with Dillon. I cried in front of my mom when Lance had to go back home for work, because I knew he was really upset about not getting to stay. It makes me really sad when Lance is upset.

I also found a letter I wrote before Dillon was born, before we found out he had Spina Bifida.

“09-20-2012

Dear Dillon,

I want you to know that we thought of you before you were even conceived. We already had your name picked out several months before we found out we were pregnant!

I am now 18 weeks (and four days) pregnant, and I must say, it has been quite a journey.

I was sick the first 12 weeks of my pregnancy with you, but I was happy to know that it is only because you were in there growing fast!

I lost my love for sweets, which by the time you read this, I’m sure I’ll be eating plenty of them once again and you’ll probably find it hard to believe that I ever stopped.

I craved chips and cheese dip and for some reason cold, fruity drinks, like apple juice and orange juice.

September 4th we had an appointment for a 3D ultrasound of you to find out you were a boy. You were moving around so much it was almost as if you were doing karate! So, daddy and I are both convinced you’ll be very active (he immediately decided you’re going to play football, if you want to haha).

Your daddy loves talking to you, even though you probably can’t make out what he’s saying, I’m sure you still hear the sound of his voice. He usually says things like, he loves you, and tells you about the kind of man he hopes you turn out to be (kind, respectful, etc.).

We found out on September 18th that you could possibly have a neural tube defect (I’ll explain to you what that is when you’re older), but I know in my heart that you’re perfectly healthy!

Your Daddy, Nana, Grandma, and Aunt Celeste already buy stuff for you! You’re going to be so spoiled, and apparently a fan of the Razorbacks. 😉

Everyone is SO excited to meet you!

We all already love you so much!

Love,
Your Mommy”

Lance also wrote a letter before Dillon was born. I might save it for another post, or maybe I’ll just update this one tomorrow, because I can’t find it at the moment, and Lance is sleeping in our room right now.

Look at those cheeks!

Look at those cheeks!

I don’t know what he’s pouting about but I could just pinch those cheeks off, fry them up, and make baby stew. Okay, I don’t condone eating your children, but Lance and I always joke about making baby stew when we talk about how there’s nothing to cook. He’s just too cute and sweet, I guarantee you it would taste like marshmallows or maybe pumpkin pie. I have so many nicknames for Dillon, but so far “pumpkin boy” has stuck with me.

Anyway, that’s it for tonight! Thanks for reading. 🙂

The Grand Plan

It has been a busy couple of days. I decorated my nieces birthday cake and, although it was a lot of fun, it’s not easy to do something like that when you have a baby to worry about.

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However, Dillon isn’t much of a worry.

I got lucky, the kid is pretty chill.

I got lucky, the kid is pretty chill.

The hard part is lugging all of his stuff around whenever we go places. I feel like I’m moving out every time. And he may be only 14 pounds, but when I’m carrying him in his car seat I start to notice my complete lack of upper body strength.

I have found that my favorite parts of the day are early in the morning and at night right before bedtime. I love when Dillon first wakes up, because he’s so happy and smiley and has that sleepy look on his face that makes you want to give him a hug. I also love right before he goes to bed, he’s so sweet and cuddly. I give him a bottle and bath and even though my awesome kid will fall asleep on his own without being rocked, I sometimes rock him anyway just because I want to. However, when I rock him, it’s really hard for me to put him down for bed, because after he falls asleep in my arms I just want to hold him all night.

His hands are brand new to him every day.

His hands are brand new to him every day.

I sometimes forget that he’s “disabled”. Even if his leg movement was completely compromised, I still feel like I’d probably forget. Even if he had to be in a wheelchair, I don’t think I’d even see it. The “not normal” becomes normal.

All I see is Dillon.

Adorable, sweet, funny, lovable Dillon.

Adorable, sweet, funny, lovable Dillon.

Everyone on the planet was made how God intended, no mistakes. People want to ask “why?” But the thing is, only God knows. I look at it this way: He sees the big picture, whereas we only see a brush stroke. A blob of orange is part of a beautiful sunset. It’s all a part of God’s plan.

It’s bed time for me, so until next week! Say it with me.. “Follow, share, like! Follow, share, like! Follow, share, like!” 🙂

The Clinic Visit

May 9th, my day started at 4 A.M.

Dillon would be seeing seven (technically eight) specialists; Radiology, neurology, physical therapy, urology, rehab medicine, clinical nutrition, orthopedics, and a social worker.

First, radiology..

He had two ultrasounds and two x-rays. An ultrasound for his head and one for his kidneys, and then an x-ray for his spine and one for his hips.

Chilling in the ultrasound room.

It’s kind of dark, but aren’t we sweet?

Then we went to the SB clinic and waited for results. Dr. Ocal came in first and said his ventricles look good, the shunt is functioning properly, and everything on his head ultrasound looks good.

Shortly after, physical therapy came in and evaluated him. She was surprised at his leg movement and said, “Well, it looks like he’s moving everything..”

Next, urology visited and told us that his kidneys look healthy and there is no sign of reflux. He explained that they are reactive when it comes to catheterizing, which means unless there is a problem, there is no need to put a baby through being catheterized several times a day if they may not even need it. He went on and said that some places are active, meaning that if a baby is born with spina bifida, they are catheterized from the beginning even if there is no sign of a problem. I am glad that he practices the former.

By this point Dillon was pretty exhausted from skipping all of his naps and so while his Nana was holding him he decided to take a little nap.

Rehab came in next and examined him. Poor Dillon, being rudely awakened by someone poking at his feet. She said that Dillon is not pushing his feet down (plantar flexion). I’ve seen the kid push off my legs on his tiptoes so I’m still pretty skeptical about her observation. I mean he was sleepy and tired of people messing with him, and she was a bit loud, I probably wouldn’t have cooperated either.

Then we waited about three or four hours for the others and were finally told that clinical nutrition and the social worker would not be seeing Dillon today because they went home sick. So the only specialist we were waiting on was orthopedics.

When the orthopedist finally came in he told us that Dillon’s hip and spine x-rays look good and then he took a quick look at how Dillon was moving. He was very surprised and said it was amazing that his lesion level (L1/L2) is so high but he functions at such a low level (the lower the better). Yes!

Let me explain what this means..

Here is a diagram of the spine (sorry the letters are so small, but this is the best diagram and website about spinal nerves I could find. You can click on it to go to the website and see the image up close):

Click on the image to go to the website and read more about spinal nerves.

Dillon’s myelomeningocele (the worst form of spina bifida, where the spinal cord is actually pushed out of the back) is at L1 (the top part of the lumbar). It is said that most of the time, when it comes to spina bifida, wherever the opening is located, all of the nerves below that level will suffer damage.

According to the rehab specialist, Dillon’s S1 nerve (associated with plantar flexion) is damaged. I am still trying to figure out if this means all of the nerves below S1 could possibly be damaged, which I don’t think that’s what it means, because Dillon still moves all of his toes.

Anyway, his level of spina bifida is at L1! Do you know how much of a miracle it is that some, if not all, of his lower lumbar and sacral nerves are still functioning? It’s pretty awesome. So if you are a non-believer of miracles, well, here you go:

The exam table is probably not the most comfortable place to nap, but after a long day Dillon did not care.

My day ended at 10 P.M. We were all hungry and Dillon was overtired so he had a rough time going to sleep that night, but it was a good day, a good day for a miracle!

The Cutting of Parts

I’m really going to try and update once a week, maybe a bit less, maybe a bit more, it really depends on what I have going on. I’ll try to keep my updates on Friday.

Yesterday was doomsday for Dillon (A.K.A. circumcision day). Yes, it’s a little late in the game, but he couldn’t be on his back for a while and therefore we had to wait.

I think I was probably more upset about it than he was, although, if he actually knew what was going to happen he probably would have learned to walk/run yesterday.

They're gonna cut what off of my what?!

“They’re gonna cut what off of my what?!”

I made the mistake of reading about the complications of circumcision the night before Dillon had his appointment. Don’t do that (I should really stop researching things on the internet). All you need to know is that it’s a very common procedure and that they might be fussy for a day, but they feel better soon.

I can't believe that just happened. I don't know what to do with my life anymore.

“I can’t believe that just happened. I don’t know what to do with my life anymore.”

The next day.

The next day.

They used the PlastiBell for Dillon’s circumcision. It’s a bad idea to read about that too. All you need to know is that it’s very easy to care for and scarring is negligible.

Dillon has a comprehensive appointment May 9th. As strange as it sounds, I am most concerned/curious about his bladder and bowels. Making sure the kidneys are healthy is one of the most important aspects when it comes to a person with spina bifida. If a child has the issue of not being able to empty their bladder completely, urine could reflux into the kidneys and cause problems.

Fun fact: 95% of children with spina bifida have problems with their bladder or bowels.

I read somewhere that the more they move their feet, the more likely they are to not have urinary nor bowel incontinence. Dillon moves his feet quite a bit so we will see how reliable that information is on Thursday.

Even if he does have problems, this doesn’t mean he will have to wear diapers all of his life. He will learn social continence by catheterizing himself every few hours. No one would notice it, because it would be as if he was just making a trip to the bathroom.

However, perhaps this will not be the case. Dillon could be the 5%. He’s a pretty unique child, so I’m betting on it.

Anyway, that’s it for now, I’ll update the day after his appointment and let you all know how everything went!

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.