SAM IS GETTING STRONGER

Holding Sam for the first time.......tubes and all

Those first 24 hours were so difficult to live through. The minutes and hours seemed to drag as I stared at the clock praying that time would pass quickly. Time was our friend in these first few days of sam's life....he just needed to rest and get stronger...time would allow him to do that, but for me it was difficult. Even though I was not allowed to nurse Sam because he was intubated, the nurses encouraged me to begin pumping so that one day I might be able to. I began on the evening of august 25th and I did this every 4 hours for 5 weeks straight. Our freezer was so full of frozen breast milk....well it was quite a sight. I was praying that one day Sam might be able to use it.

Everyday Sam got stronger.....the doctors told me the thing about babies is that when they get sick, it can happen so quickly....within minutes....and when they get better....it's the same it can happen very quickly. This is why every hour that went by was crucial. Sam was 3 days old and they were able to take him off of the Blood pressure meds and the paralyzing meds....praise God. We still did not have a date yet of when they were going to do open heart surgery....this was always weighing heavy on my heart. I really just wanted to hold him so badly. I spent the days doing very little for him as a mother. It's very difficult to just watch your child and let someone else care for them while you wait and wonder.

It was exhausting going back and forth from the hospital...my days were spent with Sam and my evenings with the boys at home. There is no place for parents to sleep at the NICU so staying overnight is not an option. I couldn't anyway...not with 3 boys at home who were terrifed of what was happening.

Our life was so far from normal...not something I had ever imagined. The nurses were so encouraging and helpful and really were trying to reassure me that Sam was in good hands. I knew God was watching over the whole situation, but when you are someone who likes to be in control it's a really hard place to be. I remember coming home every night and going into Sam's room and sitting in the rocking chair and just crying out to God. I had never felt so helpless and useless in my entire life.

Sam had a lot of visitors over the next couple of days. We were only allowed to bring in 1 person at a time, so we did it in shifts. It was so good to have friends and family visit as it helped the time pass as we waited for news about surgery. I watched parents come and go and you really start to get an understanding of how devastating some lives become in just a matter of minutes.

Sam was able to come off of all of his meds....this is really good news as it means he is not relying on outside intervention. I was anxiously waiting for news of surgery when the nurse came and told us that we could hold him tommorrow!!! I was so excited. He still had tubes everywhere, but I was fianlly going to get to hold my baby.

It was august 29th I called the hospital to make sure we were still able to hold Sam...the answer was yes. We went bright and early and when we got there I announced that I wanted to hold my baby. I sat in a rocking chair and they placed a pillow in my lap. The nurse lifted him with tubes and all and placed him in my arms. I felt his little body for the first time and started to cry. Sam snuggled in and fell asleep and slept for the whole time. I held him for about an hour and then they had to do some stuff some stuff so I had to put him back. Sam gags on his breathing tube and it is hard to watch, but it means he is fighting it to try and breath on his own and this is a good thing.

Today was a great day...Sam was 5 days old when I got to hold him for the first time. I will never forget that....ever

SAM MEETS HIS BROTHERS

Sam's body is swollen from all of the medications that he is on. His skin looks very tight....it was.

Taylor meeting Sam...he was nervouse at first, but then he was glad he came.

Exhausted parents.......I was so glad to see Sam finally......this would be our life for awhile.

The next morning I showered and got ready as soon as possible. I informed the nurses that I was leaving and then we were gone. Once we arrived at the Stollery we headed up to the NICU. We were about to enter into a world that I never imagined I would have to be in. Whenever you are going through something we all tend to associate with people who can understand what we are going through. Rod and I were about to walk through the doors to the NICU and discover a place we had no idea existed. We knew it was there, but not really. It really becomes a home away from home. The support that is needed is huge and only other families and staff members can truly relate to what you are going through.

I will never forget the first time that I saw Sam. The nurses had stopped us outside just before we came in to let us know what to expect. I heard what they were saying, but then when you acutally see your baby....well let's just say all the warnings in the world aren't enough. Sam had 5 central lines plus he was on a machine that was breathing for him. He was hooked up to numerous other machines all playing a part in helping him get better. He was on so many different medications and he was being fed through a tube. They had paralyzed his body so he couldn't move because the slightest movement made his blood pressure go up. We could touch him and speak softly, but there was to be no loud noises and Rod and I were not even allowed to speak to one another across his bed. All of this caused his blood pressure to go up...something they were trying to avoid.

I finally got an opportunity to speak with his nurse. She had said that his night was very rough and they chased his blood pressure all night long. In the morning though, he seemed to have settled a little bit.....I think it was all of the prayer. All I wanted to do was hold Sam, but I couldn't.....any stimulation made his blood pressure go up and all kinds of alarms went off. It was very hard to sit and watch your child so lifeless....I spent the whole day praying and watching the machine breathe for Sam. I couldn't take my eye off of the monitor that was telling us how much oxygen he was getting.....it was approixmately 80%....normal is 100%....but this was acceptable right now. He just needed to get strong so he needed to rest his heart and let the machines do all of the work for him.

We had a lot of support from friends and family...they were invaluable to me. Rod went home and got the boys and my mom to visit Sam. It was important to me that the Taylor, Jesse, and Kyle meet their brother......Sam's survival was still very uncertain at this point. At anytime his heart could fail and we would lose him. We brought the boys in one at a time and we took pictures of each of them. Taylor took it the hardest....he could hardly look at Sam and all of the tubes. We explained to him that he needed to meet his brother because if Sam didn't live he would grow to regret that. Taylor gathered his courage and once he saw him and got past the tubes he was fine. Each of the boys had made a card for Sam......I still have them....they are priceless. My mom just kept stroking Sam's little hand...I know it was hard on her to watch this. She had come to stay with us to help out once the baby was born....things changed. Life has a way of doing that to you.

It was a miracle Sam survived the first night......my prayers were answered. I now had hope that maybe Sam was going to pull through all of this. I had no idea that my faith would be tested so much over the next 5 weeks. I was going to take it one day at a time......and today we had made it and that was enough.

A NIGHT OF MIRACLES

Sam after they did catheter surgery.....he was very sick, but alive and we were very thankful.

I think I was in shock....or at least in denial....or something. Right before the transport unit took Sam away from us, I had asked the question.....is he going to die.??? Nobody really wanted to answer me, but as I sat in my wheelchair, crying, not being able to hold or touch Sam, I wanted to know what we were up against. Rod prayed over Sam before they transported him and I had asked, no, begged Rod to go with the ambulance to be with Sam. I made Rod promise me that if Sam was going to die to make sure that you hold him and tell him that I love him so much and that I'm sorry. Believe me this was agony....not being able to be with your baby....it was awful...and then they were gone.

I watched the seconds tick by on the clock in my room....I will never forget that clock. It seemed like hours before I heard anything.

Rod called finally......Sam had Transposition of the great arteries....there was good news with this and bad. I wanted the good news first......it was fixable, but it required open heart surgery.....the bad news......Sam making it through the night didn't look good. Bascially Sam's heart was wired up backwards. The blood was not being oxygenated because his arteries were not going into the right chambers. His blood that went to his organs never was oxygenated, this is why he was blue. The only way to fix this was to perform open-heart surgery. It was a one time operation and he would not require any futher surgeries....as far as they could tell....this was very good news. The bad news....he needed help immediately and he was very unstable. When Sam arrived at Stollery Children's Hospital they quickly went to work on him to find the problem. Once they did they could figure out what to do to try and save him. There were a couple of things that were unique to Sam's situation. When a baby is born and they take that first breath it seems so natural. Inside the womb where it is safe and warm babies don't breathe oxygen....there is a flap (for lack of a better word) that allows the blue and red blood to mix to get oxygentaed and when we are born that flap eventually closes over time. In Sam's case that flap closed almost immediately....this is why Sam was in immediate trouble. In most cases this heart defect goes unnoticed at first and new parents even take their babies home...only to discover a few days later that something is wrong. I am not explaining this with a doctor's degree, this is a very simply explanation, but you get the picture. The immediate danger that Sam was in was that he was so unstable that to try and do anything was a huge risk, but to do nothing meant he would die...what a choice. They called in Dr. Yashu Coe...he would become Sam's cardiologist for the next 16 years or so. On a side not this man has an amazing gift.....his hands and knowledge are a gift from God....what he does is miraculous.......here is a link to just one thing he has done for kids with heart problems. http://www.expressnews.ualberta.ca/article.cfm?id=645 Anyway Sam needed an operation to immediately save his life....they needed to buy some time for Sam to get stable before they did open-heart surgery. This is where Dr Coe comes in......he was going to perform a procedure called Balloon Artial Septostomy. What that all means is that basically they were going to go in through his groin area with a catheter up to his heart and rip a hole in his heart so that the blue and red blood can mix. This does not sound good and there were risks involved...what choice do you have though when doing nothing means death. This procedure needed to be done very quickly as they were losing Sam. They had maxed out all of the meds they could give him. There was no time for them to prepare the Catheter Lab so they operated on Sam right on the ward. During this operation we learned that they almost lost Sam twice.....but praise God he made it through. I also learned that when Sam arrived at the hospital a good friend of ours was Sam's nurse.....praise God he was in such loving hands right from the beginning. While this was going on I spent a lot of time phoning people to pray for Sam....word had quickly got out and we had quite a network of people praying....another blessing in all of this. Dr Coe's procedure bought us some time so Sam could get strong and stable.....he still needed to have open-heart surgery, but for now he was alive and I was very thankful. Dr Lemke was Sam's neonatoligist and he was the one that called me after Dr Coe had finished to let us know that Sam had made it through, but was still unstable, but he was oxygenating blood at 80% now...normal is 100%. Rod came back to the hopsital to sit with me and my mom went home to be with our other 3 boys. We had several miracles happen this first night....the most significant of course was that Sam survived Catheter surgery.

What a long night...we spent the night praying for Sam and that morning would come quickly so I could leave. I had told the nurses that I was leaving in the morning no matter what...they just said o.k.

I stared at the clock the entire night....morning finally came......

RADIOTHON 2009

My Movie @ Yahoo! Video
Sam, rod and I were on the radio today supporting the Radiothon that raises awareness and funds for the Stollery Children's Hospital. It was a great success....Sam didn't say much, but he enjoyed the ice cream.
Debbie

STOLLERY CHILDREN'S RADIOTHON 2009

Every year the local radio stations in edmonton do a radio-thon to help raise money for the Stollery children's hospital. In the past Sam and Rod have helped out. Rod was a keynote speaker at one of their fundraising dinner's and Sam was on the radio talking about his story...well it was Rod talking and Sam agreeing. Anyway Sam is going to be on the radio on thursday to help raise money for the Stollery. This is a place that you hope you never have to use, but if you ever do you are sure glad that it's there. We were very thankful that we were able to walk out of that hospital 5 weeks later with our son. The care that he got was amazing and you just never know when you are going to find yourself in a situation where you need the resources that it has to offer. We never thought we would ever need it...and I am sure glad that they were there for us.
Sam will be on 2 radio stations:
Thursday March 5 on Joe FM 92.5 at 4:15 p.m.
Thursday March 5 on CISN FM 103.9 at 4:45 p.m.

Here is a link for the Stollery foundation
http://www.stollerykids.com/page/home.aspx

WE NEEDED A MIRACLE

Sam in the oxygen tent before they transported him...this was the only picture I had of him.

Sam is a miracle, there is no doubt in my mind. He is a gift from God and I thank God everynight when I pray with Sam for the miracle of his life......before the miracle though, came the valley........

Once the nurses saw that Sam may be in trouble they wanted me to start pushing. I was only 8cm dialated, but this was not a concern for them. Just as I was beginning to push my doctor showed up and took over. On august 24, 2000 at 5:07 p.m. , Sam came into this world crying. He weighed 8lbs 3oz.....he was a big baby. At first everything appeared fine, but it was only minutes later when they realized something was very wrong. Sam would not pink-up......he turned blue and his cries turned to more like a moaning sound. The nurses knew immediately that something was very wrong and they rushed him to the nursery. I didn't even get a chance to see his face or touch him before they rushed him away. It seemed like hours before anybody came back into the room to let us know what was going on. When someone finally did come they informed us that our baby boy needed to be transported to a different hospital...they were not equipped to handle whatever was wrong with Sam. They wheeled me down to the nursery so I could see him before they left. When I got there, the pediatric doctor told me it was bad....really bad. They had done a chest x-ray and had ruled out lung problems, so they knew it was his heart. The doctor also told me that he might not make it. I burst into tears and I could not believe the situation we found ourselves in. Jody from the transport unit handed me a polaroid picture of our son and asked his name. I blurted out Sam......his name was supposed to be Josh, but Sam is what came out. I later found out that Samuel means Gift From God.....very appropriate. Jody was preparing me for Sam's death.....she flat out told us that his chances of surviving the ambulance ride are very slim. At this point I just needed some hope......I was so scared and so overwelmed with emmotion....it was very hard to think straight. I begged Rod to go with Sam....Rod didn't want to leave me because I was hemmoraging....this was the least of my worries. I wanted someone to hold Sam and be with him if he wasn't going to make it....I just wanted Sam to somehow know that he was loved. Rod was confident that in the end we were going to bring our son home, I wasn't so sure and at this point I needed God to reassure me that everything was going to be alright.

Rod called some good friends of ours to go and pick-up my mom so she could sit with me while Rod went to be with Sam. I cannot express how very bleak Sam's survival looked at this point. His oxygen levels were only at 30%.....the doctor's were very clear that they did not think that Sam would make it and to prepare for that. All I could do was pray and ask God for a miracle, but I also prayed that in the end, if he was just going to die anyway then please, before he has to suffer let him go.

The transport unit left with Sam and Rod followed them. My mom arrived and they settled us in a private room. I was not allowed to leave because I was bleeding too much. I argued with the staff about this and at one point I had them convinced to let me ride over in an ambulance. Just as I was about to leave I started to bleed really bad and they would not allow me to go. My mom and I sat in silence and I stared at the polaroid shot of Sam and then stared at the clock and waited for news. We sat and prayed. This would be the longest night of my life......I was hanging onto the hope that God would give us a miracle.