Skylar~~ What a special name to me. In September of 1999, I found out I was pregnant. I was so excited and yet scared to death. Once I saw the confirmation positive on paper my journey with Skylar began.
I was preparing myself for the extra weight, morning sickness, being tired all the time, but to tell you the truth Skylar was good to me. No morning sickness, I stayed full of energy and I didn't gain weight till I was 6 1/2 months. I couldn't complain.
The biggest problem Dave and I had was naming her. We were going to name her Kaylee but I have niece name Haylee~ I didn't want the names to rhyme. So I sat watching TV looking at credits and reading books.. No name really took to me. Finally I watching a rockumentary on an 80's band. The lead singer had lost his little girl due to cancer at the sweet age of 4. Her name was Skylar. The little girl was beautiful and I thought it would be nice to name Skylar in her memory. Just that~ we did.
In December (I was 3 months pregnant) something was terribly wrong. I was sitting in church and I starting getting terrible pains in my stomach. It was so unbearable, I thought I was losing Skylar. I had an emergency operation about three hours later to remove a cysts on my ovary that was cutting off all circulation of oxygen to Skylar. Once the started the surgery they had no choice but to remove my ovary and tube. It was so scary and at first I put up a fight and wouldn't let them touch me because I was afraid of losing the baby. They said if I didn't let them operate I was going to die, so I have to "pick." What was I to do?? Right after the surgery they couldn't find The baby's heartbeat but after 5 minutes they succeeded. From that point I knew our baby was going to be a fighter.
In April of 2000 (8 months pregnant) I wasn't feeling the baby move as much~ from that time on I went for an ultrasound every week. They assured me that everything was fine. I stopped working the first week of May because I kept going into false labor and they wanted me on bed rest. Then it was time for the real thing!!
I went into labor on June 2, 2000. I was till 11 days early, well, who knows because my due dates ranged from May 23rd to June 27th, they didn't know! The last date I had was June 13th. Labor wasn't bad. I kept assuring myself that I could handle it. I was doing great. The pain didn't bother me. I think it was because I was so excited to finally be able to meet Skylar. Then, they had to break my water and the real pain began!! I was in labor for 37 12/2 hours (hard labor for two). After "failure to progress" they decided to give me a c-section.
At 1:11pm June 3rd, 2000 my healthy beautiful little girl was born. Skylar Elizabeth Saranchuk. A healthy 6 pounds 7 1/2 ounces and 19 1/2 inches long. She was beautiful. She had her Daddy's black hair. She was our dream come true. She scored 9's on her apgars and we were eager to get her home for our family to begin.
The first three months were perfect. Dave and I took turns getting up with her at night for feedings. The only thing we didn't get was why she sweated so much. We just figured she was a hot baby.
At two months of age we took Skylar to physical therapy due to tortacolis (like a stiff neck ). Then we notice her mobility was very limited. There was times she held her head up, but other than that, she wasn't rolling or lifting her head from the floor. No milestones that a two month old should have. We decided to work on her muscle tone for another month. The doctor said she was just hypotonic and she will gradually gain strength.
At three months of age with no improvement we made an appointment with the neurologist to see Skylar. On October 3rd (Sky is four months today) we went to see the doc. She looked at Skys reflexes, then her tongue. She told us that they needed to keep her overnight for further evaluation. The next morning, they performed an EMG. At that point on their attitude towards Dave and I had changed. We knew they were hiding something but we didn't know what. They asked us to come in a room so it would be private...Little did we know, that private room is where our dreams had died for our little girl.
They told us that they believed Skylar was suffering from Spinal Muscular Atrophy (SMA). I didn't have a clue what that was, but I started to cry. Then they told us.. she will never crawl or walk and yes she will die soon. When we asked them how long, they told us we would be lucky to have her 8 months and to take her home and love all we could. So we did.
When we got home, it was so hard and so much to take in that we had no clue how long Skylar was going to be in our life. I was so hateful to God questioning my own beliefs. Yet, I turned to him asking to help me save my little girl. We still had a bit of hope. The DNA test was going to come back negative and then I would wake up and it would be a terrible dream. On November 4th, 2000, my dream became reality. Skylar was a fighting angel of Spinal Muscular Atrophy. I was prepared to fight with her.
At the hospital, they gave us web sites for support groups of SMA. I logged on to SMASUPPORT.COM, where I met my second family. They all got me on my feet again and let me know there is hope for Skylar and that I shouldn't give up.
The first doctor I saw that didn't look at my baby with a frown on his face was Dr. John Bach and his side kick Lou Sapirito (Uncle Louie I call him now). I can't even begin how to tell anybody how these two men have made such an impact on my life. Dr. Bachs protocol has saved Skylar so many times. He sent me home with an overwhelming amount of information. I didn't think I would ever get it straight. The pulse/ox, in/ex-suffulator, BI-pap, information on special diets. My Gosh, I was only 23, I didn't learn this much in school! Till this day though, Skylar uses every one of them religiously. Plus the special amino acid diet, I truly believe it has help Skylar come as far as she has.
On November of 2000 our reality of SMA really hit home. Sky had aspirated her bottle and was struggling to breathe. I took her to the ER and they almost left her to die. She was so mismanaged, I couldn't believe she made it through that ordeal. She did though (that's my girl!!) On December 5th, she was transported to UMDNJ (University of Medicine and Dentistry of New Jersey) in Newark New Jersey. Dr Colin Bethel took her under his care and there he placed her G-Tube. from that point on we decided to start her elemental diet of vivonex/tolerex , amino acids, and supplements.
The year of 2001 one is one I will NEVER forget. Sky was so sick. Pneumonia~ one after another. I was in the hospital way more than I was home. When we did get home, within a week she would be right back in. She had severe reflux and all the pneumonia's were from aspiration of her food. We tried everything.. medicines to control it, we tried a GJ-tube (the food would surpass the stomach and go to the small intestine). For a while that worked, we also kept her on continuous feeds. May 1st, 2001, it didn't work. She aspirated her food so bad, her heart had stopped. I couldn't believe my little girl was gone. I prayed so hard that she would come around. The doctors worked so hard, but all I heard was "We can't get a heart beat." Then a scream "We got one!" Dave and I were in there holding her hand and when she did open her eyes, she looked at us and squeezed our hands. After stabilizing her she was transferred again to UMDNJ to undergo a flundoplaction (nisson, tying of the stomach). She hasn't has pneumonia since (knock on wood) so I am glad we made that decision.
We weren't sure Skylar would be home for her first birthday. They said we would never see that day, so we were so excited that it was about to arrive. It did June 3rd, 2001. She was 1.. who could believe it???? It was a miracle in our eyes.
The first year was so hard for us. The second year hasn't been as bad, but there was still plenty of scares. It is so hard watching a child battle for their life. So many hospitalizations, x-rays, intubations, heart stopping, plugging moments in a child's life is so not fair. Yet, I wouldn't trade Skylar for anything. She is Dave and I's life. She has taught me everything. Hope, strength, courage, faith and most of all, she taught me love.
I do believe one day there will be a cure for this terrible disease. I pray to God that Skylar will see that day. I think she will. I never thought at 24 I'd be raising a special needs child. It is so worth every second though. Although Sky can't walk, crawl, hold up her head, or even eat, she still makes me proud. I am so proud of her and everything she can or can't do.
There is so much to say about raising a child with SMA. For now, I'll wait for chapter two to for that. I just don't give up hope. If Sky wants to keep fighting, I will be right by her side.............
I always dreamed of meeting an angel..........then God sent me one...........