Conner’s Journey Part 1

I sat there on my bed waiting…I walked over to my bathroom and starred down and the two blue lines in front of me.

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This was my second time around finding a positive pregnancy test!image imageWe became pregnant with our second child. We were thrilled! The weeks went by slowly of course. We were so anxious to see if we were going to have another girl, or if we would be having a little boy!

I laid on the table while the technician moved around my belly with their Ultrasound. I sat there thinking “ I wonder why they are taking so long this time. It wasn’t this long with Lacie”. “ I’m going go get some assistance.” I instantly knew something was wrong. Both technicians begin moving around the wand and looking close at the screen. They kept looking at his heart for some odd reason. “Well you’re having a boy!” We were so excited! Of course we called everyone right away to tell them the news.

My mom and I had a cleaning business together at the time. I sat there at their bar listening to a voice mail on my phone. “ We found a large mass inside of your sons heart. We need to send you to a better hospital for more testing”. Sheer panic of course overcame me. Obviously my husbands response was “I’m sure they are just wanting to be extra cautious.” I knew they weren’t. How could you see a huge tumor? It would be more likely to see something missing, not an extra part! Of course I’m no brainiac.

We arrived to our appointment in the big city and nervously waited to be called by a genetic specialist. We gave them all of our family health history. Next was an ECHO which is an ultrasound of the baby’s heart to check blood flow and growth of the mass (tumor/tuber). The tech sat there quietly but answered my question. “Is there really a tumor in there?” “Yes, there definitely is a mass there.” As Dina pointed to the tumor which looked like a heart beating. Nope! The tumor was so big it looked like the heart.

After the ECHO, we sat in a cold room with little space. Now that a tumor was confirmed, I became numb. I didn’t know how to feel. The doctor came in and explained that the tumor was called a Rhabdomyoma Tumor. Our son would likely have Tuberous Sclerosis. The tumor would continue to grow until birth. Little did I know how fast it would grow. Tuberous sclerosis became my last thought of the day. Our daily horror was “I wonder how big the tumor has gotten today”. We had to travel 3 hours every 2 weeks for regular ECHO’s.

At 27 weeks, I noticed Conner started moving less and less. I came to my appointment and was told his tumor was so big that his heart would soon stop beating. And then he would die. I sat at the end of the patient table. Starring at the floor, while the doctor explained everything to my husband and mom. I don’t remember much of what he said. He said “Keep track of the baby’s kicks”. That is all I remember. I couldn’t open my mouth. My teeth were clenched together. I avoided eye contact with my family.

We pulled into a gas station. I sat there watching my mom walking in to pay. I just completely melted into a puddle of tears. I was so numb. I felt like I was living a nightmare. I knew I would be waking up soon. Most of my pregnancy was in my bed. I didn’t want to be with my friends. The sadness overwhelmed me. I forgot who I really was. How could I ever be happy again? His movement became rare.

At 30 weeks, I noticed no movement at all. I called the on call nurse. She advised me to quickly head to the ER. My OB met me there. She told me his heart rate was so slow that it was at the point of brain damage. She contacted the flight team, and they came to fly me to the city. I was put on a stretcher and strapped to a fixed wing plane. My husband sat in the front with the pilot.

I laid on my side for 45 minutes while the flight nurses checked Conners rate every 5 minutes. We finally arrived safely and was immediately admitted. A million people came into my room and ran tests. They told me they would most likely take him out that night. We were terrified. His chance of survival was so slim already being premature but having an enlarged heart with hardly any blood flow. We prayed and prayed…

The doctor finally came and decided that Conners chance at survival was the same if they took him out or left him in. It was decided they would leave him in. They scheduled an induce date at 39 weeks but told me that he would pass away in the next couple of days. I was given info on funeral arrangements. I wrote out my plan. I forced myself to a few gatherings to distract myself but suffered silently.

 

Somehow he survived until 39 weeks. We came in, and everyone was surprised. They began inducing me. I was somewhat anxious to meet my son, even if it would be only a few moments. I smiled for pictures. I kept quiet most of the time. I didn’t know how to feel.

They rushed and called on their emergency pager for an emergency c-section. His heart was dropping too low. They rushed me out before I could say bye to my family. They ran me down the hall, and pushed my bed through double doors. They laid me on a table with a huge light above me. I shook so much I could hear metal hitting metal. I was scared out of my mind. They put me to sleep and that was it…everything went black.

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Confessions of a special needs parent

Confessions of a special needs parent

Health issues of my own. Severe stress and lack of self-love can bring on a whole lot of health issues! I happen to be one of them! I was diagnosed with Conversion Disorder January 2014. It took two years to find a diagnosis. The bottom line is, we all forget to take care of ourselves when we are so busy with our special kiddos. In order to take care of them, you have to remember, YOU NEED TO BE PRESENT. There were numerous times were my body just shut down and it killed me inside not being able to take care of my son. So take those vitamins, eat healthy, and have quiet time to yourself…I better practice what I preach!

Therapy. You should never feel guilty for seeking out professional help. If you are embarrassed, then just keep it to yourself. Nobody needs to know. It’s only your business! Talk to a resource center and ask about programs for parents of special needs children.

Medication. Do you know there are over 70% American’s who rely on medication? Just because you need medication to get through this rough life doesn’t mean you’re a quack! Most of the people you know are probably on something themselves. I myself take an anti-depressant. I am not ashamed of it! And you shouldn’t be either! Medication isn’t for everyone, those of you who have gotten along without it, more power to you. I’m just saying, don’t feel ashamed. And again YOUR BUSINESS!

Forgetfulness. If you say you have never forgotten to give your child their medicine, or missed their doctor’s appointments, then I would say you are full of… POO POO! It happens to the best of us, over and over and over again. Hey thanks Adam & Eve for our inherited forgetfulness! (NOT!) Don’t feel guilty. I find that setting an alarm in my cell phone is a great reminder, but don’t do what I do and click the “dismiss alarm” and then forget! Get up and do it the second the alarm rings.

Jealousy. Every parent is different on how they handle their situation with their children. Here is what I felt in the beginning when my son came into the world. Any time I saw a magazine cover that said anything about milestones, or pamphlets given at the doctor’s offices. I began to feel a little monster called “Jealousy” attacking my heart. It used to happen every time. After a while I began to accept that my son is going to do things when he does them. Every child hits their milestones at different times, and yes maybe my son will wear diapers his whole life, but I sure am lucky to have such a wonderful, loving son, and THAT is the most important thing to remember. Jealousy never really goes away. It’s okay to feel jealous, having kids with disabilities, and special needs is apart of our world now more than ever. Kids were not meant to be sick like this. It’s only natural we have strong feelings inside eating us up. That is why belonging to some sort of group to talk about how you are feeling is so important! Thank goodness for Facebook!

Excuses. You may not agree with me, or pretend, not to agree with me, but I have found that having a special needs child can pretty much get you out of every sticky situation. “Hey do you want to come to my Tubberware party?” I’m thinking “I would rather stay home, and mop my kitchen”, but instead you use your child as an excuse! HEY, we have every right! I don’t see it as lying because no matter what… going to social functions is always going to be difficult with a special needs child. Don’t say you have never done it!

Proud. Every parent’s deals with talking about their kids differently. Some parents don’t like to talk about their child’s disability. I, on the other hand, am opposite. I LOVE to share with people about my sons disability, not to receive pity from people, but because I am so stinking proud of my son. He has defied all odds, and did the opposite of what doctors thought he would do. So yes, MY son has over 100 seizures some days. MY son doesn’t get to taste food because he is fed through a tube. MY son is globally delayed because of all of his seizures. MY son crawls, he tries to sign, and he loves…

Siblings. Sibling ALWAYS suffer from a lack of attention from their parents. It is good to recognize this and try your best to give them attention at every opportunity possible. Of course, our patience is stretched so thin, but I always remember that my little girl won’t be my little girl forever. I try to take her shopping with me to the grocery store, and running errands. I don’t do this often enough, but I find that she really enjoys mommy-daughter dates, and daddy-daughter dates. Even if I have plans to be somewhere Friday night, my husband and my daughter stay home. They watch kid’s movies and eat goodies. Usually our son is already asleep. So they have one on one time easier.

Asking for help. If your pride is in the way, GET OVER IT ALREADY! There is no way you will survive being a special needs parents without asking for help. There’s just no way. We are Jehovah’s Witnesses and our friends bend over backwards to help us with whatever we need. Having a great group of friend who are reliable is crucial.

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How to survive your child’s hospital stay

My husband and I spend a lot of time at the hospital with our son. At this very moment, we have been in the hospital for 6 days. Conner will be having a pacemaker put in tomorrow morning. Whether your child is sick or has special needs like our child, at some point you will be forced to temporarily move on in to the chaos.

It’s best to remember to stay positive. If you are instantly negative, time will pass much slower! The best way to (somewhat) enjoy your stay, is to devote time to making yourself at home. Here are a few tips to help the time pass for you and your child.

First, you will want to make sure you pack the essentials. If your child is still in diapers, don’t worry about packing too many. Usually hospitals provide, diapers, wipes, shampoo, lotion, and brushes. If your kid has sensory issues like Conner, make sure you pack everything they need to stay comfortable.

Second, it is also a good idea to contact the admissions office ahead of time to let the nurses know what they need; to be prepared for. In Conner’s case, he needs a special bed that is mesh (like a playpen) because of his seizures. If your child is G Tube fed, make sure you bring a couple of boxed formulas with you and your pump. Just incase it takes a while to get his/her supplies together.

Third, there is a program called “Child Life”. For those of you newbies, you will find that child life is a huge help when it comes to you and your childs comfort. Usually when children are admitted to the hospital they are required to receive an IV for quick medicine access or for other reasons. There are a few tricks that can help keep your child to stay calm during this process. Usually child life will already be aware of these tricks, but just in case, I’ll tell you them anyway (just because I’m awesome)!

STAY CALM

1.Numbing cream (LMX) applied 30 minutes prior to the poke. The cream will be taped down.

2.Sensory confusion with vibration. There is a device called “Buzzy” that is made for this specific purpose. Here is the link to learn more about it. http://buzzy4shots.com/ . At our current hospital, they don’t actually own one. Instead, Child life came to the rescue and found a vibrating back massager, which worked just as well! Usually you will want to hold the vibrating device right over the area that will be poked. Hold it there for about 5 minutes before poking. Remove the device just seconds before the needle is placed.

3.Distraction is a huge key. I have an iPad mini, but usually Child life already has one on hand. We play either cartoons or a calming apps. Here are just a few that Conner likes “Soothing” (by fisher price) “magma” (by sensory). Try to keep the staff that’s assisting, quiet and calm so your child doesn’t sense fear.

Sleep is ALWAYS an issue while staying in the hospital. Make sure you pack a sleeping mask (that’s comfortable to sleep with) and ask the nurse for ear plugs. These are MUST haves!!!

When you are bored, and trust me…you WILL be bored. Here are some ideas to keep you busy.

1.Start a new TV series on Netflix either you will need a tablet or laptop for this.

2.Decorate your child’s crib area with bright crafting paper (ask a nurse to help)

3.Get addicted to Pinterest! (Duh!)

4.Read a new book

5.Ask “Child life” or a nurse to show you where the board games are kept. (obviously you can only play a board game if your child is old enough or you have a partner staying with you)

6. Ask for some BUBBLES! These are really fun for adults…..I mean kids….

7.Check out a movie (Ask “Child life” for help)

8.If your child is still small enough. Ask the nurse if they have little push wagons. This is something we do with Conner every hospital stay and we all really enjoy it. Sometimes, if the sun is out, you can even go outside in a designated area! (Oh yeah, I forgot how much I love fresh air!)

9. Craft a huge card for all of your childs nurses to sign and take home.

Having a notebook is a huge life saver while in the hospital. I have found myself dumbfounded when the doctor is done speaking and they ask the famous question “So, do you have any questions for me?” and I sit there staring at the floor trying to remember the 50 questions I had floating around somewhere in my head. I bought a notebook at the gift shop the first time Conner was in the hospital. I organized my questions like this:

Example

(Q) How long after the procedure can he go home?

(A)

Leave a couple of spaces in between so you have enough room to write the answer before you jot down the next question. Doctors are usually impressed by so many questions. It makes them feel like they need to be on the ball more, and it helps them view us more seriously. (or so I have noticed)

I hope I have helped in some way! I hope that none of your children have to stay in the hospital, but obviously you are here for a reason, so I am sending *HUGS* to all you caretakers. STAY POSITIVE for yourself, and your child.

Here are a few pictures of my cutie bug in the hospital. Sometimes he is miserable but about 90% of the time, he is one happy camper!

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