Home sweet Home

Finally, the time has come where I can be released from the hospital and go home. It was the beginning of June and somewhere around 110 degrees outside. Ahhh yes, Arizona summers. You gotta love em!!! Actually just seeing the blue skies was refreshing. I didn't care how hot it was because I finally got to see something besides hospital walls. Dull, drab white walls. I couldn't wait to get home and see all the kids. I was still groggy and weak but I knew I could lay in my own bed with my own family. It was awesome! My sister helped me inside and Randy and the kids all greeted mommy with hugs and kisses. I still had stints in my kidneys which was a little uncomfortable but survivable. I only had one more surgery left and that was to remove the stints in a month. Kyle's services have now begun at home. He has physical, occupational, early intervention and speech therapists that each come once a week. They were all so good about including Ellie and Andrew as well. Finally I can get into a routine. Every morning at 9am a different therapist came to work with Kyle. Even though he was a newborn, incorporating all these things in his daily routine really helped Kyle developmentally to not be so far behind with his milestones. We really never know whats around the corner with Kyle. we just have to watch him develop and see what he can or can't do. one thing that Randy and I felt very strongly about was not putting limitations on Kyle or any of our kids for that matter. i know a lot of people may think we are too laid back the way we raise our kids but honestly it only hurts their self esteem later in life to be told they can't do something. Our kids are raised knowing that if they want something bad enough they can work for it. I firmly believe that is why Kyle is so "normal". We let him fall, we let him crawl up stairs, climb on things. So many people would ask me "aren't you scared he'll hurt his head?" I would say "nope, I'm more afraid of holding him back". Well our new life is pretty much filled with doctor visits, trips to the neurosurgeon, cat scans, in home therapy sessions and play dates. I'm always tired and someone's diaper always needs changing and yes usually someone is always crying...usually me! When Randy comes home from work he takes the kids and tells me to go walk or take a bath. A lot of times I just want to sit in my room and be alone. Thankfully we have great neighbors and friends. Heather has 4 boys and Karen has 4 girls. We spend a lot of time together sitting on our driveways, letting the kids play to just survive the day. It was always a joke between Randy and Heather's husband Troy that when they came home from work we still had our jammies on. I know I wouldn't have survived those years without my girl friends. Heather and I use to laugh that our house looked like a bad white trash daycare. So what if Martha Stewart wouldn't be impressed...we had fun any how. It's now January 2004 and Andrew is turning 2!! Grandma Sandi came in town to celebrate the occasion. As we were getting ready to have cake we noticed Kyle was in the bouncy seat not looking very well. He starts crying and projectile vomiting. Whoa!!! he's now screaming and unconsoleable. We call the doctor and they tell us to feel his head for anything unusual. it feels a little soft so we go to Phoenix Children's Hospital. After a battery of tests they discover that Kyle's shunt is clogged and they need to do surgery to unclogg it. Randy and I both slept at the hospital with Kyle and Grandma stayed with Ellie and Andrew. We're going to come through this stronger I told myself.

the kidney saga...

Well it's been quite a day for all involved. After finishing up scans and x-rays and a whole battery of tests the doctors decide that I would go into emergency surgery to drain my kidneys. I don't know why but I was sooo afraid of being put under. I literally begged and cried like a child to let me stay awake during surgery. Obviously that was not going to happen. Finally they gave me anti-anxiety meds and they knocked me out. After coming out of surgery they told me that i had flooded the whole table with fluid that had been backed up in me. That is why I was toxic. I was unable to urinate and release all the toxins in me. The entire staff of doctors and nurses where in shock. They said they had never seen anything like this before in someone who was so young. The chance of having kidney stones on both sides, both blocking the ureter tube and both the size of marbles was almost slim to none. I was a very lucky girl to come through all this. I wasn't out of the woods yet however, but feeling much better than what I had been feeling like none the less. i still had a week long stay ahead of me. They needed to get the lithotripsy machine to Scottsdale North hospital where I was at from some other hospital in the Valley. There is only one machine for the entire Phoenix area. The machine blasts kidney stones up so I can then pass them...Oh Boy!!! Sound like fun?? They did 2 separate surgeries since they( kidney stones) were on 2 different sides. After surgery I looked like someone had taken a baseball bat to my back and torso. I was black and blue. Needless to say the machine is pretty powerful at blasting the stones. My in laws went home and my sister Nancy flew out to help with the kids. She took a cab to the hospital and met me there after surgery. Randy came with the kids for a visit. That was like watching a 3 ring circus. Andrew had thrown up all over himself b/c he used to get carsick all the time, Kyle had already gone through his bottle and Ellie missed me so much and wanted to practically sit on me. Mind you I had all kinds of tubes in me and she was trying to pull them out. When the nurses caught wind of what was going on they took Andrew and cleaned him up and gave him a little pediatric gown to wear and got Kyle some infant formula from the pediatric ward. It was complete chaos!!! I wanted so badly to go home with my family but my blood pressure was not cooperating once again. Finally I was put on blood pressure meds, potassium pills and getting some sort of injection in my stomach. I can't even remember what that was for?? I think it was flo-max or something. Finally 1 week later I got to go home. My sister made dinner for us and helped with the kids. I wondered if my kids would ever know what normal was anymore. My stints had to stay in me for a month or so to continue draining my kidneys and then I would have another surgery to remove them. I could finally see the end of the tunnel. Our crazy life of being a family of 5 was just beginning. You cannot go through this without being completely thankful for just being alive. Every morning I wake up now and am grateful for just being alive and for Kyle being alive. We all take so much for granted. I have learned to live every day to the fullest. I go after what I want wholeheartedly because I know that we all don't get 2nd chances in life. I would rather live life knowing that I tried and failed something rather than living my life with regrets.

This is after Kyle got to come home the first time...

So here I am in the hospital on Easter weekend. I should be very happy that Kyle was finally here with us but I was not feeling good and they couldn't get my blood pressure to go down. They said i couldn't leave the hospital until it was stabilized. I missed Ellie and Andrew a lot!!! After all, they were still babies too and needed mommy. The worse part is Kyle was now at a different hospital and I couldn't even see him. I felt so alone and depressed. Not to mention the hospital staff was horrible. I had to practically beg them to bring me stuff. My other two were born at Scottsdale North hospital and the experiance was awesome! I wish I had that same experiance at Good Sam. Randy and my mom were at home with the other kids trying to keep nap schedules as usual and get ready for Easter. They all came to see me on Easter morning after church. Wow! Ellie and Andrew looked so big!! It was weird, just the other day Andrew seemed so little. He still wasn't walking. He crawled around the hospital room and got into everything! Not a good place for a 3 year old and 1 year old. Randy and my mom got to go see Kyle at PCH. I was happy at least someone got to hold him...I just wish it was me. So now they finally let me go because Kyle was going to have surgery and I wanted to be there with him so bad. He was in the NICU at Phoenix Childrens. We had to be sanitized to go through there and see him. He was in a little incubator to stay warm. He was sooo cute! After meeting all his nurses, I knew he was in the best care possible. His neurosurgeon, Dr. David Shaffron, was one of the best pediatric neurosurgeons in the country. I knew if anyone could help our baby it was him. Pastor Ted came down to meet us and stay with us during the surgery. Randy and I had been in a life team/bible study with about 10 other couples for quite some time now and it so happened that Kyle's surgery was during the night that we were supposed to be there. It's an amazing group of people that we call doing life together. We can all talk to each other about problems we are having and what not. Obviously they knew all to well about Kyle's journey. After the surgey Ted got on his cell phone and called over at The Patterson's house to give the group the good news that the surgery went great. He put them on speaker to let us hear them clapping and screaming!! It was great! I couldn't wait for them to wheel Kyle out so we could see him. Poor guy...his little head was all bandaged up and they had to shave his hair off for surgery. Yes, he had hair. He has Lombardino in him! My kids all had lots of hair. He had to stay in the NICU to be monitored for a while so we knew he wouldn't be going home with us. It was so hard to leave him there but on the other hand, I wanted to see my other kids. They didn't know why mommy and daddy were always gone with the new baby. Meanwhile, I was having excruciating back pain! I felt sick a lot and was in so much pain that Randy had to carry me up and down the stairs. I had never had a c-section but don't remember anyone saying that they felt this bad. I knew I had to suck it up because Kyle still wasn't home with us yet and I needed to go back and forth to the hospital each day to be with him. A week later Dr. Shaffron told us that after Kyle's surgery that he developed hydrocephalus. That means he would undergo another surgery to put a shunt in his head. we all have spinal fluid that drains naturally from our head and we urinate it out. If we didn't ( like Kyle ) our spinal fluid would build up in our head and our head would swell up or expand and eventually burst. What the shunt does is act like an irrigation pump. When the fluid builds up, the shunt opens to allow the spinal fluid to drain into a tube they put in him that goes from the shunt, down his neck and empties into his belly where he can then urinate it out. So now our little guy has undergone 2 major brain surgeries and needs to be monitered some more. Just when we think we get to bring him home, once again, another surgery. This time his shunt got clogged and they have to go in and fix it. I wonder on a daily basis what all this is for?? Why is this happening? Our we strong enough to handle all this? Kyle is a trooper! He pulls through once again. I want to just bring him home and keep him safe. NO MORE HOSPITALS!!! The no sleep and stress and depression is really wearing on me. I'm in more pain than ever! I feel like I should be felling better, not worse, each day. Everyone keeps telling me that it's my c-section and all the stress I am under. Maybe they're right. I keep truckin' because I want to get to a "normal" way of life for my family. The day after we got to bring Kyle home it was time for Gma Sandi to go back to Kansas City. My mom had been here for 4 weeks already. She was worn out. I drove her to the airport with all the kids in tow. Ellie cried the whole way there. She wanted Gma to put her in her suitcase. We were all crying when Gma left. That was a horrible ride back home. Grandma Valerie and Grandpa Gene came next. They came for a week to help with the kids since I had a c-section and Randy had to now go back to work. As the week went on, I was still in tremendous pain. I made an appointment with my obgyn to see if there was anything unusual going on with me. When I got there he performed and exam and said everything looked normal. He gave me some pain pills and told me to try and take it easy..."Right!!!". He also asked me to give a urine sample. I couldn't go though. He said drink some water and sit for a few minutes and try again. The minute I drank water I threw up. Immediately!! It was like it wouldn't even go down my throat b/c there was no room. It was really weird. He gave me a cup and told me to urinate at home. I started thinking..."I don't think I have gone to the bathroom in a few days". Huh, that weird I thought. I threw up 4 more times on the way home and didn't stop for 2 days. On that friday, i asked my father in law to take me to the hospital. I was in so much pain I couldn't take it another minute!!!! I just wanted to be knocked out cold. Once I arrived the took my blood pressure and it was 190/150. They immediately wheeled me up to cardiac. They thought I was having a stroke but didn't know why. They tried to give me a catheter but failed...I was too dehydrated and it wouldn't go in. I was on morphine and they were running all kinds of CT scans and so on. Honestly, I lot of it is a blurr. Finally my husband got there from work and a doctor came in and said " you need to go on dialysis immediately". I didn't even know what that was. He said "you are in complete renal failure, you have no working kidneys. Had you not come in to the hospital you would be dead in a day or two." What??? " I screamed, am I going to die?" They just said we are going to try and get you better. My husband was holding my hand and looked as if he were going to pass out. They wanted to do surgery right away and put stints in my kidneys to drain them.

Going to Kansas City

So after Ted and Peggy left our house that night we got the kids to bed and began packing for our trip. I remember calling our parents to give them the news because I didn't want to get off the airplane and have them wonder why we were so upset. We got maybe 3 or 4 hours of sleep that night. Early the next morning Mike O'Shaughnessy came to pick us up and take us to the airport. The whole time we were in K.C. I remember thinking I was having a miscarriage. I had some cramping and my Dr. told me that it was highly possible. I've always been a very positive person. It was weird how I found myself just acting very normal like nothing had happened. I felt the need to make other people feel alright and not uncomfortable around me. I also didn't want my kids getting upset wondering what was wrong with mommy and daddy. Well we went back to Arizona and now had to face all our friends. I knew they already had heard the news but now we had to see them face to face. Pastor Ted called us and asked if we would give a testimony on stage at church on Sunday. He said there was a pastor from Oklahoma and his wife that were talking on stage before us and he would like them to pray for us and interview us. We agreed. Basically we just began to tell our story. We had to make the decision of whether to continue the pregnancy or not and the turning point in our faith is when we decided that the decision was not ours. God gave us this baby and if He wants this baby to live it will happen. Randy and I both felt a huge sense of peace and strength that came from that decision. It's what got us through the rest of the pregnancy. We started having level 2 ultrasounds weekly to check for more complications. There were so many syndromes associated with encephaloceles but the more they looked the more surprised they were. They couldn't find what they were looking for. They just kept saying how shocked they were that our baby didn't have extra fingers and toes, cleft lip, massive retardation, extreme deformaties of the face and so on. Somewhere deep inside me, I was NOT surprised at all. I made a decision to leave things up to God and I knew that it would all work out the way He had planned it. If my baby was retarded or deformed, then God would give us the strength to deal with that. I knew that he might only have a few minutes or hours with us but I would make it the BEST few minutes ever!! As a few more months had passed my doctor wanted to discuss the birth. He said that Kyle ( that's what we wanted to name him ) would have to be a c-section so we wouldn't burst the sac on his head. We scheduled his c-section for May 19th. We picked this day because Ellie was born on 9-19-99 and Andrew was 1-19-02, so it made sense that he would be the 19th also. Mid April I was not feeling well at all. I felt sick all the time and had a lot of back pain. One day after dinner I laid on the sofa and told Randy I was having a hard time catching my breath. I just didn't feel right at all. We called 911 and the ambulance came to our house. my blood pressure had soared to a dangerous 190/140. When I got to the hospital they realized that I was having contractions. My doctor was called and I was put on bed rest. The next week I laid in bed feeling depressed and helpless. I hated every minute of it!! On April 18th I woke up with excruciating back pain! My husband rubbed my back then got on the computer to look for answers. ( this is his way of finding answers about everything) He states, I think your in labor..."Uhhh, you think?" I was irritated none the less. We finally call Dr. Nelson and he tells us to get to the hospital immediately and have my labor stopped. It was Good Friday and I called my mom to let her know whats going on. I said everythings fine they're going to stop my labor. What I didn't know is that my mom was dying her hair when I called. She was so panicked that she bleached her hair then forgot to put the red dye on it . It was 4am and we called Mike and Karen O'Shaughnessey to watch Ellie and Andrew for us. Off we went to Good Sam in Phoenix. Once I got there they began to try and stop my labor. I was also put on anxiety and high blood pressure medications. Nothing was working. At one point I ripped of the little belt that goes around your belly to monitor the heart rate and through it across the room. I was scared and in shit loads of pain! My mom had immediately flew to Arizona and met us at the hospital. She got there as they were wheeling me in to surgery. Here we go...Kyle was coming early! We prayed that he weighed enough at birth to undergo surgery if need be. I was crying and so scared. Randy got on scrubs and met me in there. Everything happened so fast. All of a sudden Dr. Nelson and Randy were both crying and shouting "He's beautiful!!!" He was 6lbs...not bad for all his problems and born at 36 weeks. He was amazing. I barely got to hold him though. Kyle was transported to PCH ( Phx Childrens Hospital ). As they wheeled me out of the room I was very drugged up and dizzy and sick. Pastor Scott and Pastor Ted were there in moral support. They got to peek at the little guy through the window before he headed to PCH.

Encephalocele

This is a picture of a large encephalocele on a baby just after a live birth. Kyle's was classified as a medium sized encephalocele.










Only 21% of babies live through birth and half of that number have severe deformities and mental complications.

My 1st Blog!!

O.K., so here I go. After having dinner and a few drinks with friends last night, it was suggested that i start a blog. I have wanted to write a book for some time now but can't seem to get my thoughts together. I'm hopeing that this will serve as a way to express my thoughts as well as help other people going through the same thing as our family.
Let me just jump right in and fill you in on whats been going on in our lives the last 6 years. Summer of '02 my daughter Ellie was 3 and my son Andrew was 5 months when we discovered I was pregnant once again. A little surprised? Yes but very happy none the less. At 16 weeks we went to have an ultrasound to find the sex of the baby. The technician performed the ultrasound and quickly sent us upstairs to see our doctor. I knew this wasn't normal protocal b/c I had 2 other children. We did what she said and went to see Dr. Nelson. His nurse was waiting for us with arms stretched out to hug us. What's going on, I thought...? As Doctor came in he proceeded to tell us that our baby has what is called an encephalocele and his brain was growing partially outside his head. Wow!!! That's a lot to take. They immediately performed an amnio to find out if the baby had any genetic disorders as well. The results would take a week or so and we were leaving for Kansas City at 6am the next morning for Christmas. My family lives in K.C. and was very anxious to find out whether we were having a boy or girl. Our doctor told us the grim statistics that i would most likely miscarry and if the baby did make it full term he could be still born. Only a very few % make it and out of that percent only about 2% live past 2 days. The chance of any quality of life was very slim. These children that survive can be severely retarded, have feeding tubes and so many more issues. We were asked to make the decision of continuing the pregnancy or not...We had 2 weeks to let him know our answer. we went home to pick up our kids from The O'Shaughnessy's house ( our good friends and neighbors ) late that evening. We dreaded going in there because we had to tell everyone of the news. After a lot of crying and hugs we gathered up our kids and headed home. In the meantime, our friends had called our Pastor and his wife Peggy to give them the news. When we got home Pastor Ted and Peggy were at our house with big hugs waiting for us. See their daughter Abby was born with downs syndrome a few years earlier and had gone through a lot of similar feelings as us. It was comforting to have that connection with someone that understood what we were feeling. I recall the best advice they gave us that night was for my husband Randy and I to never turn on each other and turn TO each other. They said you will have ups and downs and it will be very easy to blame one another but your other kids need you both!!