From the second we found out we were pregnant our dreams started to come true and more dreams were being thought.
It was a typical pregnancy. No complications. Not even morning sickness. I wanted a girl. My husband a boy. This time last year we found out we would be the proud parents of a baby boy. We were all ecstatic. The first boy on both sides. The dreams really started to roll. A future sports star, lover of cars. Just like daddy.
The nursery was finally ready. The house was spotless, thanks to my nesting. We had just finished watching Ohio State win a blowout game. The perfect end to a fall day.
I was on a set schedule with my blatter. Always awake between four and five. Right on schedule I was up at four thirty. I didn’t get back into bed that night. I stood at the side of the bed where my water had broke.
I woke my husband “Allen, I think my water just broke.”
He jumped from the bed “what do we do?!”
The one thing he didn’t want to happen was a middle of the night drive to the hospital with pure panic. Not something that can easily be avoided.
I calmly walked to the bathroom. Sat down on the toilet where I proceeded to call parents as he’s running frantically around the house.
At the hospital labor was slow. I was given petosin. Braxton didn’t like it and his heart rate dropped. After a couple tries my Dr. decided we needed to do a c-section.
I was relieved that it would soon be over and Allen was terrified to watch me go through that.
On November 6th at 1:18 pm we received the gift of a 6 pound 3 ounce 19.5 in baby boy Braxton Allen Eckert. From the first moment we laid eyes on him we we even more in love than we ever thought possible.
To the naked eye he was a perfect baby. Beautiful eyes and lashes everyone gushed about. Ten fingers and toes. Absolutely perfect.
From the first feeding there was very little interest. He was a brand new baby we just needed to help him learn.
When we left the hospital there was no reason anyone would think we would have any problems. I wish that was the case.
The first check up was perfect. He still looked perfect to the naked eye. No weight gain or loss. His color was great. Still so perfect.
The following appointment his weight started to raise concern. He had gained very little. We were told to try to feed him more. Because every two or three hours all day and night just wasn’t enough.
We did what we were told and offered the bottle any time he made a sound. Still not good enough. Our next appointment he still had gained very little.
The following appointment, which were now bi-weekly, still not much weight gain. At one month he was eight pounds. Still trying to feet him still not getting anywhere.
The next few appointment still the same. At two months he weighed nine pounds six ounces. At that time they put him on a higher calorie diet. “If this doesn’t work we will send him to a gastro specialist.”
At this time his interest in the bottle seamed to taper off. He ate very little. We tried different bottles. That did the trick for a short time.
Three months Braxton weighted ten pounds three ounces. He was gaining. Very little but he was gaining. “Let’s watch him and see how he does.” I voiced my concern for his lack of interest with not only the bottle but tummy time and bearing weight on his legs. I was told to try a few things. The same things I was suggested before with no improvement.
At his four month appointment they finally decided maybe we should try something. We went to a soeach specialist. He failed the swallow test. Many would think failing is a bad thing.
To us we thought it was an end to our struggles. He was finally starting to eat more with his thicker liquids. His nutrition explained his delay and interest with the tummy time and him not using his limbs. She thought he was sure to go up from here!
Once the swallow study was completed we decided it would be in his best interest to find a new pediatrician that had the time to give him. Someone who treated him like a little boy and not just a number.
The new doctor is absolutely fabulous. We are all on the same page. Everything was starting to go his way. He was five months old and well on his way to thirteen pounds. She had sent referrals for his eyes and an eeg due to something she referred to as Myclonic Seizures. (Twitches)
Our excitement was short lived.
Braxton had stopped taking his bottle almost all together. We started to give him baby food to make up for his refusal to eat. He loved taking from the spoon. We thought it would work until we could get back into the doctor the following week.
It started to take a toll on him. He began sleeping more. He was exhausted.
My sister, whom watches him while I work, asked me “does Braxton ever just hold his breath?”
I have never seen him do anything like that. I thought maybe it was something new he had learned.
I couldn’t stop thinking about why he would have done that. I looked a few things up and began to wonder if he had a seizure. I texted my sister and asked if maybe, from what she seen, that could have been what it was. She looked up some videos and she was convinced that he did in fact have a seizure.
Braxton had an appointment the following morning. He had been sleeping since I picked him up the day before. He didn’t look like himself.
I let Dr. Brown know what my sister had seen. At that very moment he started to have one. He had two more consecutively.
It was the most terrifying thing I had ever had to witness. Thankfully we were in good hands.
We were sent across the street to be processed and transported to Nationwide Children’s hospital.
It was the longest day of my life. Exhausting in all possible ways.
I had to explain to each new doctor exactly what he had done while he had the seizures. Each time was just as hard as the first. If it wasn’t for Dr Brown pointing out his exact actions I wouldn’t have had anything to tell them.
We were admitted and scheduled for an eeg the very next morning. Coincidentally the same day our referred eeg was scheduled.
The first fourth five minute test was clear. They moved us to a long term testing room and decided to keep him hooked to the leads for a few more days.
Everyday we patiently waited for them to send us home. We desperately wanted to be home before Easter. Unfortunately that was not the case.
The three day EEG was still clear. From there he had an ekg, and echo, and and MRI. Everything was clear. Our baby was still perfect.
They decided since there was no clear cause the they would diagnose him with epilepsy and send us down the hall to continue with feeding.
The tube was placed while tests were being done and gaining weight was a daily goal. He was on a strict schedule and diet. He was eating more from the bottle. What he wasn’t taking would would push though the tube and he was gaining weight.
They redid the swallow study. Although he didn’t pass his liquids didn’t need to be as thick. Another improvement!
Our next step was genetics. They were going to do a “fish” test. They didn’t know what they were looking for but an answer was what they were hoping to find.
I didn’t think anything of it outside of “what does that have to do with eating?” I would soon have that answer.
Once all the tests were done and some improvement was made they decided that after ten days baby Braxton was allowed to go home with his new tube and ng trained parents.
We were setup with all kinds of follow-up appointments and medicine.
The following week I received a call from the genetics dr. “Braxton is missing some information.” I wasn’t sure what that meant. “It happened from the moment he was created.” I understood that there was nothing we could have done but what does it mean? “It’s from the #2 Chromosome. Don’t google it. The information will not be clear. We will talk about it next Friday when you come for an appointment.”
“Don’t google it” is like telling a child not to eat the cookie sitting on their tongue.
I googled it. I was devastated. There wasn’t a lot of clear information but I knew it wasn’t good. Specifically I found a file on the Unique website. 2q24.3 deletion syndrome.
I spent a week trying to keep myself together. What does it all mean for Braxton? Will he be special needs? Can he catch up and be ok without it.
Our appointment Friday morning gave me nothing more than the same print out from Unique. They couldn’t tell me a thing. I was left with the same questions. Everyday I develope new questions and almost no answers.
I started this blog to be a source of information for those few parents out there that find themselves in the same situation. Every child is going to be different. This we all know. What we don’t know is what has happened over the life span of one person with this unique syndrome. I want Braxton to be that child that can offer some sort of hope.