You Never Dream of This….

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Growing up when you dream of your future and your hopes, I don’t know of anyone who imagines themselves having a kid with special needs. When you first become pregnant that thought doesn’t cross your mind.

To be honest, I had never heard of Spina Bifida until our 20 week ultrasound.

But to say that Jacoby hasn’t changed and fulfilled our lives in many more ways than we could have ever imagined would be a lie. He has been more of a blessing than words can explain.

When we first brought him home it was the normal overwhelming first time parents situation where we were up every 2 hours to eat, he’d sleep, he’d want held and he was a baby. But then there was the task of cathing, watching his back lesion for infection, the vomiting oh the vomiting, the frequent Drs appointments and then the casting.
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Jacoby was born with dislocated hips and clubbed feet and at a month old he began almost a 4 month long process of casting to bring down his hips and turn his feet.

You can not imagine the looks, the words, the confrontations we got into over those casts. We were young, carrying around this baby with 2 thigh high casts on. I was changing him in a bathroom and one lady said that the system is broke if we are allowed to keep our kid after hurting him. I was soo mad the only thing i thought to say to her was to eff off.

Jacoby never took a real bath until he was 5 months old. Between his back healing, his casts, and then his shunt surgery he was always sponge bathed.

September 10th, 2007 Jacoby didn’t wake up like normal. I walked into his room and he was awake but very lethargic and noiseless. I called Josh and decided to take him into Dr. R to get checked out. His fontanel was a little bigger but had always been a little more firm due to the hydrocephalus. Dr. P, our neurosurgeon said some kids bodies naturally adjust to hydrocephalus so he wanted to give Jacoby a chance to self correct. At Dr. R, they immediately measured his head and in a time span of a week, it had grown 7 cm. Dr. P was in Lincoln doing a brain tumor resection but scheduled Jacoby for a shunt placement the next am. I sat up all night with Jacoby as he puked up everything, couldn’t move his right side and was not my little boy.

We arrived at Children’s early and the nurses still remembered Jacoby. Dr. P came in and gave me a hug and promised to take care of him. We walked him all the way to the outside doors and kissed him goodbye. I lost it. The thought of my little guy getting his head cut open and his stomach cut open was hard to think about. We waited for what seemed forever before Dr. P came out and said he would take us back to Jacoby and we could follow him up to the PICU. When I first saw him my heart broke. His head was sunken and he was wimpering like he was in pain. As soon as we got to our room and they got him settled I held him until his pain medication kicked in and got angry. Angry that this was happening to him. Major surgeries, casts, eating issues and pain. And he wasn’t even 4 months old yet.

From then I noticed more of a struggle in myself. Jacoby went on to have Achilles surgery that November and we finished out the year hoping it could only go up from here.

I wake up everyday with the fear that Jacoby will have had a seizure and died in his sleep. Or that today is the day his shunt fails and he will need emergency surgery. Or he will get a pressure sore that will turn into an infection causing sepsis then death. I wake up everyday with the fear that as I kiss him and send him off to school, it may be the last time.

Jacoby had a seizure at 9 months of age, February 11th, 2008. Since he had his shunt placed for his hydrocephalus in September and it went well and no one ever talked about seizures post shunt surgery. So here was my baby laying on the ottoman shaking and turning blue around the mouth for what seemed like forever and I didn’t know what to do. I didn’t know why my baby wasn’t crying when i picked him up or touching him or calling his name. I remember his limp body and at the ER the nurses rubbing his chest and pinching him to get him to respond. I remember asking them to do something and the Dr asking if I shook him, then how long Jacoby had seized. I remember standing back trying to see through the crowd and my mom saying a prayer next to me. And then I remember when he first came back and his cry he let out and how I crumpled to the floor in relief and tears. I was 21 years old and almost lost my child.

I had found out I was accepted to nursing school the following week and was torn between my child and my future. Jacoby was moved from his crib back into our bed post seizure for fear he was going to seize in his sleep. It took until he was almost 2 to break the habit.

As I worked nights while Josh pushed through college during the days I spent my time running Jacoby to and from Drs, therapies, and got the Early Development Network involved (Highly recommend it if you are worried about your child)

Josh and I were having the first year of marriage struggles and ontop of it was dealing with Jacoby’s stuff and the fact that i had fallen into a depression that I was refusing to acknowledge. Getting out of bed was a struggle and I had to tell myself that as long as I got to the bathroom in the morning I could make it through the day. I was taking it one day at a time, which is often when I still have to do.

Special needs parents are more likely to get divorced compared to normal marriage population. The statistic is 70% divorce rate by 5 years of marriage. Stress of health worries and money can break a marriage. Sometimes I look back and don’t know how we made it or why we did compared to others. I’m glad we did and am blessed to have Josh by my side.

Josh's graduation from Midland Lutheran College

Josh’s graduation from Midland Lutheran College

Josh graduated and Jacoby made it to his first birthday and we celebrated making 1 year with him. I remember thinking for the first time in a year, that we could do this and it would be alright. This was going to be alright. We were going to be alright.

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Let me begin to explain…

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There are two words we use in the healthcare field and thanks to Webster’s Dictionary I’ll define them

sym·pa·thy noun \ˈsim-pə-thē\
: the feeling that you care about and are sorry about someone else’s trouble, grief, misfortune, etc. : a sympathetic feeling
: a feeling of support for something
: a state in which different people share the same interests, opinions, goals, etc.
>Let me clarify that we DON’T want your sympathy

em·pa·thy noun \ˈem-pə-thē\
: the feeling that you understand and share another person’s experiences and emotions : the ability to share someone else’s feelings
>What we DON’T expect many people to actually have

I’ve been struggling with the fact that most people DON’T understand. I can talk until I’m blue in the face, relive moments in my life where I’ve struggled with Jacoby’s diagnosis and treatments or talk openly about my fears and I think that maybe, through words, through my laying out of all the emotions, you may have an idea, an inkling of what it’s like.

But I don’t expect much anymore.

Many many special needs moms I talk to tell the same story. We don’t get asked out too much because people assume we won’t go because we “have our hands full”. We get described as ‘quirky’ or ‘different’ because of our behavior with our kids or even with other adults and their kids. We are seen as paranoid or over react to the ‘little things’ and it tends to drive others nuts.

So take a few minutes to read a little further and maybe step inside the mind of my special needs momma mind.

I was 20 years old when we were told Jacoby had Spina Bifida. February 7th 2007. Our appt was at 11 am and it was running late. Dr. S had to go out on a delivery but I was detetrmined to stay to find out the gender. We had a dinner planned with our parents to reveal the gender and we had people waiting to find out. We went into the ultrasound room and the tech started as normal. Now that I’ve had 2 babies since I can point to the moment when she saw something that wasn’t right. Usually they whip right through the sizes for the head and get the measurements to average out the size. But she kept going back and again and again on the head. Then she kept taking pictures after pictures after pictures. Then she paged the Dr. and we had to ask for her to tell us the gender. She showed us and said “It’s a boy! Now the Dr is going to come in.” We should have known then that it wasn’t normal because after all my previous ultrasounds we went back to the room. We had a later miscarriage prior to Jacoby so we did the 8 week, 10 week and 12 week ultrasounds to ensure the baby was still going strong.

Dr. S walked in and said “we suspect something is wrong with your baby so I’m going to take a look”. She began to slowly scan me and stopped on his head. “His head is very enlarged and this area right here shows there is a lot of fluid on his brain” She then broke that down to explaining what hydrocephalus was and what it meant for the development of the brain, and how it was already causing abnormalities.

She moved down to the spine and said this area right here is what is more than likely causing his hydrocephalus and started to show us the cyst area on his spine. His spinal cord was outside of his back in a little sac of thin skin. “I’m going to send you to Creighton to see my friend Dr. B and he will confirm and go over options.”

“What do you mean options?” and then we got the truth. “So what is worst case scenario?”

“Your baby could die”

I cried all the way home. It had just snowed and haunted by these decisions and whats before us, I remember thinking about what would be the best thing for us, for the baby and told Josh that we should just crash the car and escape everything.

We still went to dinner and as the parents opened up the boxes of Thank Heaven for Little Boy bibs, Josh took my hand and said “theres something we need to tell you”. I cried the whole time and saw the mother’s fall silent. One supported any decision we chose to make, one of the dads said it was probably a dirty screen and we shouldn’t worry. I hated everyone that night. I cried all the way home and chose not to go to work or school or leave my bed for the next day.
People stopped over and would sit with me and I’d cry and cry then they’d start crying and it would make me so mad. How did they even know what this felt like?! How could they be crying?! I called the Dr’s office daily crying as we waited for our appt with Dr. B that following Monday. Hindsight is 20/20 and why I called and cried I have no idea. I think probably because I had no where else to go. Sally was Dr. S nurse at that time and she called me back and talked to me until I calmed down. She has since moved to Children’s from the office and when I see her I always hug her. Shes fantastic.

Dr. B was great. He came in and said “Congrats on your baby boy. Always good to start the family off with a boy”. He started the scan and handed me tissues then began once again going over everything. Myelomeningocele. Spina Bfida. Hydrocephalus. Clubbed feet. Brain abnormalities. Lower defect but bigger than normal. Then we talked options. Josh and I had decided without much thought that abortion was not an option. After my miscarriage I was a mess and had told myself even with a sick baby, at least I was having a baby. He said we could do this. Dr. B sat with us and said he would set us up with his friend from med school Dr. P but that this wasn’t the worst thing and that this was still a baby that would need love, diapers, holding, food, just like any other baby.

We drove home from that appt and took turns crying as we thought that maybe just maybe he would tell us other news from Dr. S. We took turns mourning the loss of the child we had dreamed about, the child we had talked about playing basketball and being tall and handsome like his dad who would play peewee football and ride dirtbikes and be trouble like his dad. We cried for the fear we had for this child. We picked the name Jacoby because it was unique and strong and now when we said it we worried for him. Is he in pain? Will he live? Will he be able to breathe on his own? We cried until we fell asleep and couldn’t cry anymore.

I dropped out of school to work to save money as Josh finished school. We knew we needed to be prepared so we met with the NICU team and toured Children’s, we met with Dr. P, who had a special kiddo of his own and supported our choice and promised to do everything possible for us.

I started preterm labor at 24 weeks and after a long birthday weekend for Josh’s 21st birthday I was resting on Monday May 28th, Memorial day thinking I just didn’t feel right. I called the office who encouraged me to check in the hospital to get fluids and a baby check. We arrived at the hospital at 330 pm and Jacoby was delivered by emergency c-section at 5:54pm. 5lbs 11 oz he came out bluer than blue but gave me a good cry after a little suction and stimulation. Josh followed him to the NICU as I laid there trying not to cry.

Our NICU stay runs together as we often hear other parents say. Hospital time is often different than real life time. Jacoby was baptized before his closure (putting the spinal cord back inside the back) and we got to hold him at 2 days of life. The nurses were great with us but spent extra time with us going over everything. When we went home and left him there I cried and cried. I called every morning at 2 am to check in and was at the hospital by 5 am thanks to my mom’s early work sched. Drs filtered through and told us we would have to take it as it came and they couldn’t give us any specifics on how he would develop. It was exhausting and so much to learn. The cathing, the signs of infections, his back care, signs of his hydrocephalus worsening, signs of failure to thrive and much more. Heather, our last nurse told us she knew we would do great and that a lot of the nurses were proud of us.

We left with Jacoby towards home and onto a new journey.

I’m spent for the night but will continue the soon