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My husband and I have been together for 10 years and married for 3, I have a 13 year old sweet sweet daughter named Ashlynn which is my husband, Kyles stepdaughter who has been very involved in her life since she was about 3 years old. Kyle and I have always wanted a couple more children, which led to 5 very emotional miscarriages with reasoning unknown.
When we became pregnant with Kyler, we tried not to get our hopes up after so many losses, but it’s difficult to not be excited. My 1st couple of ultrasounds from my regular OB doctor was a little discouraging as she informed us it was not a ‘viable’ pregnancy, meaning, I was probably going to miscarry. We prayed and just kept our hopes high that this one would be different, it HAD to be, we wanted a baby so badly and would be wonderful parents! We did start to gain hope after my 3rd month of pregnancy, as that is the hardest to get through the 1st trimester. I was considered high risk due to previous losses, I was being followed by a high risk doctor after that. There were a tremendous amount of testing and ultrasounds throughout my pregnancy. Everything was turning out great, all of my tests were coming back great and ultrasounds shown that baby was growing wonderful! We were just so happy that it was finally our time to have another blessing! Around my 4th ultrasound we found out baby was going to be a BOY! Tears filled ours eyes as we couldn’t have been happier!
My husband went to every single appointment that I had. Which was just amazingly supportive for me! We went in for our 5 month ultrasound very excited to see our bundle of joy and hear his heartbeat. Our nurse who always did our ultrasounds was always very sweet and talkative, however, this tim Kyler is almost 5 months old and has just been diagnosed with Wests Syndrome. A very Kyler is almost 5 months old and has just been diagnosed with Wests Syndrome. A very e she just, seemed different. I thought, ‘well maybe she’s just having a bad day’. When she was done and printed out all the photos of the ultrasound images, she took them to my high risk doctor to review as usual. Usually the only time he would come into the room and look himself was if there was something he was questioning. So, when he came into the room that day, I was kind of starting to worry. He as well as our nurse was just not the same that day, which made me even more scared and nervous. He left the room with the images he took and we waited a long time. Finally, our nurse came into the room and stated that our doctor wanted to see us in his office. My heart sank, I looked at my husband as I could tell by the look on his face that he was worried too. When the nurse was taking us to the office, she took us in a different room this time, it was the counseling room that had water, tissues and a bunch of different brochures on difficulties with pregnany. We sat down, waiting for the doctor, which seemed like eternity. My husband and I both knew something was extremely wrong. I of course, started panicking and crying while my husband just tried to soothe me and tell me it was all going to be OK even though I knew he really didn’t think it was. The doctor came in, sat down and started to explain what he found on the ultrasound, which just absolutely crushed us both! The results were that he noticed that baby might have ‘Agenesis of Corpus Callosum’ and his 1st 2 ventricles in his brain were enlarged. He strongly suggested an Amniocentesis be done that day and our blood tested for chromosome abnormalities.
The wait for our test results were just absolutely terrifying. Turns out, baby has a very rare chromosome abnormality, it is so rare that his specific chromosome condition (genes within the chromosomes) has never been reported or researched to be able to pinpoint what we were going to be facing when he was born. We were advised, there will be a possibility that with the combination of Agenesis of the Corpus Callosum and his specific chromosome abnormalities, he could develop autism or have seizures but he may not, they just did not know. We just prayed for the best and tried to remain positive. Which was not the easiest thing for me to do at all, considering I am a salaried manager (working a lot more than 40 hours a week) was working on overnights at a very large retail chain and was a very active position (A LOT of walking and stress). I was starting to have a lot of pain and false contractions towards the end of my pregnancy and ended up having to go on LOA a month earlier and strict bedrest at 8 months because I was starting to dialate. Which we were finally able to get under control with the bedrest.
Kyler had a pretty smooth transition into the world and just dazzled everyone with his gorgeous complexion, sweet little face and laid back cool personality. Unfortunately, just 12 hours after being born, Kyler had to be transported to a childrens hospital to undergo thorough testing. Which right off the start, made breastfeeding feel almost impossible. There he had to learn how to suck, swallow and breathe at the same time to eat. On top of that, he was diagnosed with multiple additional things that weren’t serious enough for us to have to stay for (we just had to schedule appointments with specialists and close monitoring) however, he was held in the NICU for 6 days due to having enlarged adrenal glands that could’ve been a life threatening condition called CAH. Luckily, when the results finally came in, they were normal and we were finally able to bring our sweet bundle of joy home.
At just 8 days old, (Halloween) my daughter was going trick or treating with a friend in her neighborhood and my husband was still at work. My mother came over to visit before it started to get dark to see him in his little Halloween outfit we had him in. He was getting hungry and I was to start giving him PolyViSol (vitamins) due to breastfeeding. When I started to give him the drops through the syringe, I guess he got a taste of it, (which is NASTY) took a deep breathe in and started to choke! I tried to stay calm as I turned him over started patting his back, but he was completely stiff, red and choking as he was trying to gasp for air. I couldn’t help it…I panicked! My mom took him over her shoulder, patting his back while I fumbled with my phone trying to remember the # for 911. With what seemed like an eternity, the fire department & ambulance showed up and started working with him. They informed me that they were going to need to take him to the ER. Just as I started dialing my husbands phone number, he walked in the front door. I can’t even begin to explain the look on his face as he walked in, I was hoping to be able to tell him what happened so he wouldn’t have had to come home to all this without knowing what was going on. My husband and I followed the ambulance to the hospital so I could fill my husband in. When we arrived, they put him on monitors, gave him oxygen and scheduled for x-rays to be done to ensure that liquids didn’t get down into his lungs. Luckily, everything turned out to be OK and after a couple hours, we were able to take him home.
We then went in for a hearing test in November due to failing the one he had when he was born. Results were that he has moderate to severe hearing loss in both ears and we had to schedule further testing with a sedated hearing test in 2 months. The ENT doctor also informed us that he was unable to see inside of his ears because his ear canals are too small. While we were there, I asked him about his breathing, so the doctor looked into his nasal passages with a camera scope and confirmed that his nasal passages are also very small and is why he breathes through his mouth.
I was on my paid 12 weeks (3 months) LOA and was due to go back to work from my leave a month earlier than expected, which put me at going back to the chaos just 2 weeks before Christmas. Which I knew was going to be extremely hard on me considering I was on bedrest a month before having Kyler and I was just so out of shape still. We ended up taking Kyler into the ER because we were suspecting seizure activity (seizures in children and infants are very different than adults). But with the videos we were able to capture, the doctor didn’t suspect anything alarming but wanted to schedule a 24 hour video EEG test a few days later. We scheduled it for the morning of my last day of that week as my husband and I wanted to stay at the hospital while the testing was being done. After a very long 24 hours, the neurologist informed us that he did not notice any seizure activity and we were just seeing normal infant movements and everything was just fine.
Towards the end of December, Kyler became sick. Our pediatrician put him on an antibiotic to treat a sinus infection. I did not see him as much as I was working nights and he was at a babysitter during the day. I came home one night (January 11th) on my lunch and noticed that he wasn’t getting any better and now also had a cough that concerned me. I figured he would be OK as I had to get back to work and figured if he was still coughing when I got home in the morning then I would take him to the ER. Well, he was A LOT worse when I got home that morning, so I rushed him to the nearest ER where they ran multiple tests, took x-rays, tried breathing treatments all while monitoring him but everything was coming back negative but they knew SOMETHING was wrong, so they decided to transport us to the childrens hospital. They started to do more testing and monitoring and we ended up being admitted into an isolation room because his cough was so nasty they thought he might have had Pertussis (Whooping Cough) or RSV. He was put on oxygen and they ran IVs as he was dehydrated and not breathing as well as he was suppose to. Tests results finally came back showing that he had RhinoVirus (common cold) they took more x-rays and found that he had developed Croup as well. He was put on steroids and finally after a very emotional week (as I stayed the whole time) we were sent home on January 17th and was to closely monitor him. Battling with my employer, I went back to work that week and at the end of my week rotation I noticed he still wasn’t getting any better if not worse. We took him in to the pediatrician and was then diagnosed with Bronciolitis! (Poor baby cannot win!!) They sent us home with a nebulizer for breathing treatments (Albuterol), steroids, Zantac, antibiotics and were to give him Tylenol on top of all of that for fever and pain. Needless to say, I told my employer I HAD to take off that week to help my 2 month newborn baby to get better. They were not happy.
He finally started to show signs of getting better, so he was finally able to receive his vaccinations at 3 ½ months old and he had his checkup done. He was gaining weight great, however, very behind on development, either from being sick or maybe from his medical conditions (doctor is unsure) either way, we were advised to start therapy ASAP and he gave us some information.
UPDATE COMING SOON........
This is very hard for me to do….however, the last 4 months have just been an extreme emotional roller coaster for our family and new baby boy. Please help raise funds for our sweet baby boy, Kyler Braden Ray Walsh. Kyler is almost 5 months old and has just been diagnosed with Wests Syndrome. A very rare and dangerous form of epilepsy.