Merry Christmas to all!!!!
We also want to thank all of our soldiers, who are out there tonight miles away from their families and friends. Thank you so much for all that you do to keep us safe. God Bless and come hoem safe to us.
Well, I guess I had better start at the beginning...Big Chris and I met about this time of year in 2002. I was volunteering at The Fischer Theatre, here in town. Our town has a long history of singers, actors, & dancers - and they all seem to have worked at or performed at the theater. People like Dick and Jerry Van Dyke, Bobby Short, Donald O'Conner, and Gene Hackman! My neighbor and friend, Steve, convinced me to come down one Saturday morning to volunteer. I had just been through a horrible divorce and volunteering at a theater that was being refurbished was much cheaper and more fun than therapy. :)
So, to raise money for the theater remodel, they would show movies on the weekends. I used to work under the stage, in the pitch black, running the boiler for the radiators. During intermission, I got to come up out of the basement. That is where I met Big Chris - during a filming of Holiday Inn.
Much to our surprise, a couple of months later, we were pregnant. For me, the pregnancy was a roller coaster ride, and I don't remember much of it. Mostly because I was suffering from hyperemisis, or SEVERE morning sickness. I was on bed rest for 7 months of the pregnancy. I always say that I am not sure if the medication I was given actually helped the nausea or just made me too tired to care. Throughout all of this, we had many ultrasounds, at least 2 month. Just to make sure that Lil man was still with us. There was no indication of any of what was to come in any of the ultrasounds - well, until the month before he was born.
It was actually my Dad's birthday that year, November 20. I had a regular doctor appointment and a scheduled ultrasound. Both my Mom and big Chris were with me. We went over everything, tests, etc. All of my tests came back normal. At eight months pregnant, I was 30 pounds less than when I got pregnant. I had the ultrasound and the only thing that the doctor mentioned was that he thought there was decreased flow to the umbilical cord, and that could be a sign of Down syndrome. I remember clear as day, him saying, ..."but you don't have to worry about it because none of your other tests indicate any trouble...." OK. We got a great US picture of Lil Mans face.
My Mom asked, "Do you think his eyes look like he has Down syndrome?"
"Nah," I said, "His face is just all squished." He had been in the same position since about 5 months - sitting straight up, back on my left side with one foot up by his mouth and the other under him in my pelvis.
About a month later, at one of my follow-up appointments, I had all of the sudden gained 12 pounds in a week! My blood pressure was so high they wouldn't even let me sit in the waiting room (180 over 100) - I had preeclampsia. The only cure is delivery. So, they put me on a gurney , ran me through the tunnel to the hospital LD floor, where I waited for 9 hours for my "emergency" C-section. Once they had me hooked up to everything, they realized that I was already in labor. I didn't feel anything, but was apparently having regular contractions. Strong enough that they kept asking if I needed something for them.
I FINALLY got into the OR, where it took about another 45 minutes to get the spinal placed. Years earlier, I had broken my back and several vertebra are fused right where they normally put the spinal block in. I also have scoliosis, so that didn't help. Once he got that spinal, it was almost instant. They got me set up and brought Big Chris in. I was waiting for him to fall out. He was soooo nervous!
Unfortunately, because the spinal was put in higher than normal, it numbed more than usual. I could NOT move anything below my neck - including at one point my diaphragm. I couldn't breathe and there was no way for me to tell anybody! I felt like I was going to be sick, but couldn't because everything was paralyzed. About the time I was passing out, the anesthesiologist started bagging me and must have backed off some of the meds in the spinal. I could move my diaphragm and started to feel my fingertips again. Whew! Big Chris was blissfully unaware of what was going on....LOL! He said that he was just trying not to look at what they were doing "behind the curtain."
So, the anesthesiologist tells me that when they hold up my baby he will hold up my head for me to see. He was worried about how numb everything was and didn't want me rolling off the table (that would be my luck). FINALLY, they delivered Lil Man and held him up for me to see. The anesthesiologist held up my head to see him. He was beyond blue - he was gray....and I knew immediately that he had Down syndrome. I took in a sharp breath like you do when you are scared and they took him away to resuscitate him. Meanwhile, the anesthesiologist mistakes my sharp breath for me aspirating and slams my head down and starts bagging me again - breaking my nose in the process. :(
Meanwhile, the nurses and doctors are working hard to clear Lil Man's lungs and get his oxygen levels up. At some point, during all of this, Lil Man had a stroke. We are not sure if it happened while I was waiting for delivery, during,or right after when he was so bad. Unfortunately, we will never know. That night, one of the doctors that delivered him, took it upon himself to go and delete ALL ultrasounds through out my entire pregnancy. We wouldn't find this out until much later.
They take me off to a room and Lil Man off to the NICU. I would not see him again for about 30 hours. Somewhere in the middle of the night, the Nurse Practitioner from the NICU came up to the room. She told us that Lil Man was having trouble keeping his temperature up, his oxygen levels up and that he had a heart murmur. She said that they called in somebody to do an echo on his heart and were sending that off to Peoria to have doctors look at it. (It is funny now how far we thought Peoria was from home). She started to walk out and said that we could see him in the morning, but that they would get us if anything happened. I stopped her and asked her, "What about the Down syndrome?"
She looked as if I had smacked her in the face. She hemmed and hawed and finally said that he had some traits that were consistent with DS, but we wouldn't know anything until genetic tests came back. Whatever. I already knew.
The next few days were a blur. I don't know what medications I was on, but something gave me an allergic reaction, so in addition to having a c-section, recovering from hyperemisis and preecalmpsia, a broken nose, now my entire face was peeling! Like a bad sunburn. Wonderful.
When I finally got to see my little man - he was sooooo small! We are used to babies the size of toddlers in our family. My nephew was 10 lbs. 8 oz, my niece was 9lbs, 12 oz. Little Man was 5 pounds 6 ounces and 19 1/2 inches long. He was so floppy. He had oxygen, just nasal cannula, apnea monitors, etc. He did have a feeding tube - nasal. He just could not eat. I noticed his eye would roll up and to the left and jerk rhythmically. I asked the NICU nurse about it and she thought that it was just a preemie not being able to focus his eyes - even though he wasn't really a preemie (37 weeks). We would later learn that those were the outward signs of seizures - thousands of them - that he was almost constantly enduring. many were sub clinical , or you could see no outward signs. About six weeks later, we get a diagnosis of Infantile Spasms. We are not sure to this day if this is all of that diagnosis, but it is what it is. His seizures are, for the most part, under control now.
We muddled through. Somewhere in all of this, the results from the echo came back . I was in my room and the NICU doctor called me. His exact words were, "Your baby has a communication between the four chambers of his heart." click. What the.....?
I just thought that since he was a c-section baby, the PDA that all babies have didn't close after birth. I wasn't too concerned......hah! We didn't find out until about 10 days later that the heart defect Lil Man had was a complete Balanced AtrialVentricular Canal Defect or AV Canal Defect. We didn't know that there was nothing in his heart to have a hole in. Lil Man's heart formed on the outside, but nothing except one part of a valve formed on the inside. His cardiac surgeon would later tell us that it was a miracle he survived the pregnancy. This would not be the first time we heard this. He also has only two lobes to his Aortic Valve instead of three.
Just to add to all of the mess, during this, my Aunt (Mom's sister) who is also my godmother, very quickly lost her battle with ovarian cancer. This was on her Grandson's birthday. She ended up being buried on my cousin's, her son's birthday - Christmas Eve. sigh....I was told that she was told that I had Lil Man, but they never told her, or had the chance to tell her, what was going on with him. She had been ill, but this was one of those things where nobody really expected it. It was really hard on me because we had been talking a lot while I was on bed rest. She only lived a couple of blocks away from me at the time.
Well, we came home on the 23rd of December. I can't believe that I left Lil Man with is Dad (who had never held a newborn, let alone taken care of one before) to go to my Aunt's funeral on Christmas Eve. I am glad that I was able to go, though.
This is how our adventure began....I will post more on what came next. For now, I just want to say, that I would go through it all again 10 times over, just to have Lil Man here with us. We are so proud of all you have done. We know there is so much more for you to do and show us all. We can't wait to see what is next.
We love you so much! Happy Birthday Baby!
Mommy and Daddy
Labels: Cancer Sucks