Zayden (a.k.a. The 'Nut)
As told by his mommy:
Let me start off Zayden's story by saying that he was a complete surprise. On February 2nd (a day before my 28th birthday), I went to the doctor's thinking that I had a stomach ulcer and I got the birthday present of my life. It turned out that I was pregnant. So the ulcer that I thought I had and the bout with swine flu that I was treated for were actually morning sickness. I was initially told that I was about 3 weeks along but at the ultrasound they did measurements and it turns out that I was actually 3 MONTHS pregnant with our little "Peanut." I had finished my first trimester without even knowing it!
From the time I could feel Zayden moving, he never stopped. By my third trimester, I was getting motion sickness from how much this little guy was moving around and kicking in there! His daddy and I would joke about how we were going to have Penn State's greatest field goal kicker on our hands. During my pregnancy, I had bouts with high blood pressure and my doctor was concerned about stress and our safety due to my job that involved integrating recently released mental health patients back into normal society. I eventually had to take early maternity leave due to having contractions at 30 weeks.
Fast forward to 8/9/10. At 4:30 AM, my water broke. Matt and I headed to the hospital and got ready to welcome out little bundle of joy. My contractions were progressing slowly so after they moved me into my delivery room, they administered Oxytocin to speed things along. About an hour later, at 11:15 AM, we welcomed Zayden into our hearts and lives. I held him for a few minutes before he was weighed and measured and noticed that when he cried, his one eye was wide open and his other was squeezed shut. I also noticed the the one side of his mouth didn't seem to be moving.
The doctors noticed, also. After Zayden was taken to the nursery to be cleaned up, a pediatric neurologist came into our room to talk to us. He explained that he was worried that Zayden may have suffered a pediatric stroke in utero and that's what may have been causing the paralysis on one side of his face. He wanted to take our baby for an MRI the next day to make sure that there was no bleeding on his brain. I don't remember very much about the rest of the day except doing a lot of crying and praying that he would be alright. I also remember that it was next to impossible to get Zayden to latch on to nurse. I had to squeeze his cheeks to get him to latch and even then it only worked about 50% of the time so we wound up feeding him from a bottle because when he wanted to eat, he wanted to eat!
The next day the neurologist and an opthamologist came in to get our little guy. They explained that they would have to put him under to do the MRI and it was hospital policy that he spend 24 hours in the NICU to make sure that he recovered from it properly. We were allowed to go in and feed him while he was in NICU but not much else because of all of the wires that he was hooked up to. We were told that we would know something about the MRI results in the morning.
That morning came and we were told he had not had a stroke. (Insert sigh of relief) But we were told that the 7th cranial nerve that controls the movement on the right side of his face had never formed. This is the first time we heard the words "Moebius Syndrome." That was all we heard on the subject. The doctors had never seen a case of it and they weren't sure what it meant either except that Zayden would never move the right side of his face. Matt and I immediately began researching Moebius Syndrome in the internet ion our hospital room and we began to familiarize ourselves with all of the challenges that may be lying ahead. On the day of Zayden's discharge, we met with an opthamologist who explained how to take care of his eye properly and the nurses helped me with a few different variations on the "latch techniques" so we could nurse properly. Then they wished us luck and sent us on our way.
A few days after we arrived home, we were contacted by Early Intervention in our area. It was one of the best phone calls of my life. Lisa (an angel) gave us so much information and referred us to The Many Faces of Moebius Syndrome website. It has been such a wealth of information and we are so thankful to be able to connect with other parents and people that have been diagnosed with Moebius Syndrome.
Zayden just had his 4 month check up and his pediatrician said that he is right on track as far as his development goes. She said that he seems to be on the mild end of the Moebius Syndrome spectrum (even though she really has no one to compare him to). He is holding his head up and has just started rolling from his belly to his back. His heart sounds strong and he's still as active as ever, kicking those little legs and practicing for football tryouts. He only see his opthamlogist every other month because his eye is doing great (he is able to close it fully when he sleeps and we were told that helps tremendously) and he will not see his neurologist again until next year. He also figured out how to suck without any assistance, even though it's kind of a sideways, drooling suction (done in true Zayden style) and he has also found his thumb to suck on since he's not too good with a pacifier.
And our biggest accomplishment so far is that on October 16, 2010 while Daddy was talking to him, Zayden cracked his first little half "smile". It was one of the most beautiful things that I've ever seen. It's still hard to tell what he's feeling (sometimes that little half smile comes right before he starts wailing) but we are slowly learning his body language and what he's feeling in those big, blue eyes that he got from Daddy. His brother and sister love to joke and play with him to see if they can get him to "smile." He jabbers a mile a minute and coos back at them so I'm pretty sure he loves them, too. I am confident that with a biological family that loves and cares for him and a support network as loving and accepting as everyone from the Moebius Syndrome family is, Zayden will grow into a strong person that will not let his differences affect his quality of life. We will keep you updated.
Jenn and Matt
Zayden's Story (as told by his mommy)
Zayden's life started on 8/9/10. From the moment he was born, we knew he was special. He was an absolute surprise and survived the miscarriage of his twin at 10 weeks. We knew this little guy was meant to be here for a reason.
This reason became very clear, very quickly after he was born. His right eye was wide open, even in the bright lights, and the right side of his mouth didn't move when he cried. Doctors noticed, too. He was taken from us and sent for an MRI because doctors feared that he had suffered a stroke during delivery. After that, I only remember a parade of doctors in and out of our hospital room. Ophthalmologists, neurologists, pediatric surgeons...you name it and we met them. The only thing they couldn't give us were the answers we wanted.
It wasn't until the next morning while sitting in the NICU of Geisinger Medical Center with our newborn son that we heard the term “Moebius Syndrome.” It was mentioned by the doctor doing rounds with a group of students so quickly that I didn't even remember the name. We were just given a baby with a “syndrome” and told that doctors would be in touch. I was terrified.
That was 4 ½ years ago. Today, all of the fear that we had has turned into pride for the completely cool little man we were blessed enough to have been given as our son. He is silly, he is kind, he likes us to read him Disney stories before bed, and loves with all of his heart. He goes hard, he pushes our limits, and he fights with his brother and sister. He gets angry, he gets sad, but he ALWAYS gives the best hugs and tells us how awesome we are (which actually means, “I love you.”). He is different, but he is a normal kid. He is Zayden. Unless you know him, there is no other way to describe him.
What we thought was a “syndrome” has become a part of our family. We have added members to that family through all of the other people that have been touched by Moebius Syndrome. If we have a question, we know where to go...not to the doctors that have never seen this diagnosis, but to the families that also know what it feels like to question. They have helped us navigate nursing issues, preferred eye drop surveys, and the dreaded IEP meetings. You can't have this kind of connection with people because of a medical school education. This kind of connection comes from experience and compassion, and we are grateful for everything that we have learned from the people in the Moebius Syndrome community.
In the words of Zayden, “You are all awesome.” Thank you so much.
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