PROGRESS AND SETBACKS

The blood cultures came back positive for a blood infection which meant that the doctor's had to work very hard on getting all of Sam's central lines removed. They were the cause of the infection.....the problem is that Sam was on so much medication that it was imposible to remove them. The solution was to remove the central lines and put in pic lines.....the infectious disease doctor's were not satisfied with this, but it was the best solution for now. Sam's lungs had collasped because fluid was forming around his lungs. It is a condition known as Cholothorax www.emedicine.com/med/topic381.htm). When you metabolize food, your body sends triglycerides (fatty acids) to your lymphatic system by way of a thoracic duct. Sometimes during surgery that duct becomes torn or damaged and leaks the fluid into the thoracic cavity. Sam's duct was knicked during surgery and so this is why he was struggling to breath....fluid was building up around his lungs because of his intolerance to fat(milk). This was not life threatening and treatable, but a very huge setback. Sam no longer could be fed milk of any kind. He was put on a special formula and was being fed through a feeding tube in his nose. He had a chest tube put it and I remember showing up in the morning to see him with new tubes hanging out of his body. The doctors's told us that it would be weeks before the fluid around his lungs was gone and then it would be weeks before he could be weened back onto milk products and learn how to suck out of a bottle. The medication for Sam's infection was so strong that it could only be given by intravenous. He would have to be on it for at least 3-4 weeks.....another setback. I was thankful that Sam was alive and he was getting better.....this was good news. However with all of the complications that Sam experienced it was looking like Sam was going to be in the hospital for another 12 weeks.....this was devastating news to me. I will never forget the night they informed me of all of this. I lost it. I really needed a miracle....I know there had been so many already, but I really felt lost and broken at this point. I was struggling to keep it altogether...each day that passed was harder then the one before. The infectious disease doctor's kept insisting on removing Sam's pic lines and central lines and his chest tube was filling up bags with fluid from his lungs. This all seemed too much to tolerate, but somewhere inside of me was a strength that God could only provide. Sam's heart function was doing fabulous and his breathing was coming along great. He was still on the breathing machines, but everyday they were lowering the amount of oxygen that was coming from the machine.
We were thankful for the positive things....good heart function and Sam was begining to breath on his own....the setbacks....well we were going to get through this....Sam was getting stronger and for now that was enough.

48 HOURS LATER....

All of Sam's doctors told us that the first 48 hours after surgery were the most crucial. If complications were going to happen it will be within that time frame. Sam's surgery was on September 1st so on September 3rd we decided that Sam's brothers could come for a visit since Sam had done so well. The doctors were very pleased with his progress and everything was moving along great. We thought we had made it through the worst and it was smooth sailing from this point forward. It was a sunday morning......Rod took the boys to church and I had called the hospital to check on Sam. They told me he was doing great and that visitors would be fine. Rod was going to bring the boys over after church. When I arrived at the hospital I was not prepared at all for what was happening. I walked in to a nightmare.....people were hovered around Sam.....a couple of doctors, his nurse, the respitory therapist and they were wheeling in an Echo machine. I was terrified and nobody was talking to me...they were all just working on Sam. One of the nurses grabbed me a chair and told me to sit and they would tell me what was going on when they had a moment. His blood pressure was through the roof his heart rate was way over 200 beats and he had a temperature. This was not a good day. I quickly called Rod and told him not to bring the boys and that he needed to get to the hospital quick. They were concerned he may go into heart failure and then they would have to crack open his chest again. I just sat there all alone frightened beyond words.....the doctors and nurses all tried to reassure me that everything was going to be alright, but how could they know that...they couldn't know that.....they weren't God. I was struggling and was having a hard time trusting that God knew what he was doing......people who are used to being in control often struggle in gving it up. I knew I had to because I was driving myself crazy with worry and making myself sick....not a good place to be.
Sam was lying there so helpless and he was fighting for his life.....this was so hard to watch. I just wanted him to not feel any pain and to be well. After a very long day and I mean long......it was hours before they had him stablized....and even then it wasn't what they would have liked, but he was out of immediate danger....they discovered a few things. He had a collasped lung which caused all sorts of things to happen inside of his tiny body and he had a blood infection which was life threatening and very scary. They had started him on several IV antibiotics becasue they were not 100% sure what kind of an infection he had.
As the hours went by Sam continued to stablize a little bit, but he was not out of the woods and it would be days before we saw any kind of dramatic improvement. Rod did go and get the boys for a quick visit as they were so disappointed that they didn't get to see him earlier....it's the moments that make lasting impressions and memories...I am glad they came it made me feel better to see them altogether.
We went home at around 10:30 p.m. that night. I was exhausted, but I knew I wouldn't sleep. I got up 3 times in the night and called the hospital for an update....each time he was fine and they told me to go to sleep. I never did......

SURGERY

Sam right after surgery. The picture is yellow because he had warming lights on him to help keep his body temperature even.

I don't think I slept at all the night before his surgery. I was so nervous, but yet anxious to get it overwith. His surgery was scheduled to start at around 7:00 a.m.. We arrived at the hospital at 6:20 and spent our time praying and telling Sam how much we loved him. At 7:10 they came and wheeled him out of the NICU, down the hall and through the doors to surgery. And just like that he was gone from our sight....it was a horrible feeling watching him disappear knowing that things may not go well. I was as prepared as I could be for a long day and was trusting God that he would take care of our son no matter what happened. Dr Rebeyka was the surgeon who was to operate on Sam. He was a gift from God to us. His ability to operate on such tiny little hearts and have such amazing results quite simply a miracle. I knew God was watching out for Sam and the fact that Sam had such a world reknowned cardiologist as his doctor was a huge blessing to us. The staff at the Stollery kept telling us that Sam couldn't be in better hands.....we knew he was and God had placed Sam in Dr Rebeyka's care for a reason.

The hours passed slowly.....I started to look for Dr Rebeyka at around 11:00 a.m. I was so worried and I kept trying to focus on positive things, but it was very hard. It seemed like an eternity and then finally at around 12:30 Dr Rebeyka came down the hall and sat down next to us. His first words were...it went well!! That is really all I heard......then he went on to explain that there were no surprises and he was able to close his chest. I was very thankful for this as often, because the heart is so swollen the chest can't be closed for a few days. Dr Rebeyeka did caution us that the next 48 hours were crucial to Sam's recovery. There were lots of post operation complications that could happen. Right then I wasn't focused on that.....I was just so thankful that Sam had survived surgery and things looked promising. My mom had arrived and I went to go and get her in t hospital lobby. I told her Sam had made it through surgery and that we were able to go and see him in about 30 minutes in recovery. I walked through the doors of the PICU and saw Sam for the first time......there were more tubes then baby, but he was alive and he had survived open-heart surgery. We sat with him for awhile and then went home to take a break at around 4:00 p.m. We went back up to the hospital to see Sam in the evening and his doctors were making their rounds. We spoke with them and they told us that he was doing very well. I went home that night and slept much better knowing that Sam was doing great.

It was September 1, 2000.....Sam was 8 days old when he had open-heart surgery. He was a fighter and his strength and will to survive came from God. As I laid my head down to sleep that night I felt confident and my faith had grown. Little did I know the rollercoaster ride that still was before me.......in the days to come my faith would be tested beyond anything I had ever experienced before.......but right then at that moment everything was right with the world....and I slept......

TWAS THE NIGHT BEFORE SURGERY

Rod holding Sam the day before surgery.....

Sam and his brothers the night before his surgery....this would be the last time I held him for awhile.


Sam spent his first week in the NICU just getting stronger and better. Always in the back of my mind was the open-heart surgery still to come. I was terrified and I was also trying to have faith that God was in control of this whole situation and no matter what happened Sam was in good hands. We fianlly got word that Sam's surgery was scheduled for Sept 1, 2000. I was excited and scared at the same time. I just wanted the surgery overwith and every day that went by was another day that I wasn't able to hold sam.
On August 30th one of Sam's doctors came by....Dr Burne and said Sam was very stable...this was music to my ears. He also said that the surgery likely wasn't going to happen untill the following monday. I was very upset and crying. The emmotional rollercoaster that you are on can be too much at times....this was one of those moments. Dr. Burne said he would push for friday, but it didn't look promising. Everyday that the surgery was postponed was another day spent in the hospital. A few days may not seem like much, but it is when you are living your days moment by moment. This was exhausting....running back and forth to the hospital, trying to be a mom at home and trying to be strong...and failing miserably. Having Sam's surgery postponed was like the last straw for me. I went home that night and collasped into a pudde of tears....Taylor saw me and he started to cry too. The seriousness of the situation overwelms me at times. I feel like I am in a bad dream....no a nightmare and I can't wake up. I want God to tell me that Sam is going to be alright and that he has just had a really rough start......if I had listened to my heart I would have heard that. I let my fear control me on this night and I was lost...or so I thought. Rod prayed with Taylor and me and I needed to cling to something.....that verse in the bible came to mind.....I knew you before you were born.....Jeremiah 1:5. I wanted sleep to come so I couldn't think anymore...eveything about this day depressed me. I cried out to God to help me believe.....faith and hope is what I needed......this day was a bad one....but the sun is always shining even when we can't see it.

The next morning Rod and I rushed to the hospital to find out if Sam's surgery was going to happen or not. I was able to hold him again....he looks perfect.....it was hard to believe that he was so messed up inside. Later that day they took us for a tour of the PICU....this is where Sam will be right after heart surgery. They wanted to prepare us for what we would be going through. This is where the really sick kids are. I was once again full of emmotion....there was a baby there who had just had heart surgery. His perfect little body was cut open and scarred...this was Sam's future and I lost it.
After lunch Dr Rebeyka (sam's heart surgeon) stopped by to let us know that the surgery was in fact postponed for 6 days because there are not enough beds. My heart sank and I wanted to yell at him..how can you do this..don't you know that's 6 more days that I can't hold him or take hime home ....instead my eyes welled up with tears and Dr Rebeyka walked away. I told Rod I can't do this anymore...I'm emmotionally spent. I had prayed the night before that his surgery would go ahead as planned...I beieved it.
A few minutes later Dr Rebeyka walked by us and put his hand on my shoulder and told us he would do the surgery first thing in the morning and that he couldn't stand to see a mother look at him like that. What an answer to prayer!!! The nurses later told us that the fact that Sam's surgery was scheduled to be his first one was a big deal. There was no way for it to get postponed.....a lot of times surgeries can be called off because of other things that happen during the day.
We were relieved and nervous at the same time. Sam's surgery was scheduled for Sept 1, 2000 at 7:15 a.m. We went home and brought everybody back to the hospital with us. My sister Jody and her husband Mike, my mom and of course our 3 boys. We took pictures and spent a lot of time praying over Sam and the doctors. I had a hard time leaving this night as I knew come morning everything would be different again. I fell asleep quickly, but woke up at around 3:00 a.m. and spent the rest of the night in prayer.......finally it was time to leave......

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......