NO MORE CHEST TUBE

Kyle, Taylor, Jesse and Sam.....holding him for the first time.

My sister Jody holding Sam for the first time....he was still on oxygen at this point

Sam was free from tubes except his IV...we went for a walk around the hospital...it was very exciting to leave the PICU for the first time.

I was so done with hospitals and needles IV's etc. I just wanted Sam out of there. I was so grateful to the Stollery and what they had done for Sam.....without all of them Sam would not be here. God creates miracles through other people...the gift of being a surgeon and having the amazing ability to operate on such tiny little hearts is truely a gift from God. I had reached my limit though and I was done. I was boldly seeking a miracle from God. I know that the path ahead of us did not look good, but I believed so strongly that Sam was going to be able to leave the hospital very soon. I even had a date in mind...now how bold is that. Here is the list of things that needed to happen in order for us to be able to leave the hospital. Sam's chest tube needed to be out, his lungs healed, feeding on his own and gaining weight...he had lost weight everyday since he arrived....his IV medications for his blood infection needed to be done, breathing completely on his own with no assistance....so no extra oxygen. This was quite a list of things to accomplish...considering they had told me that he had to have the chest tube in for approx 6 weeks...it was pretty unlikely that he was going home anytime soon. I believed so strongly that he was going to be going home soon.....His chest tube went in on a thursday.....I boldly prayed that we would be able to go home the following friday....how unrealistic is that. I honestly believed so strongly that I was surprised when I walked into the hospital to find Sam still had his chest tube in. The staff though, was surprised to find that Sam was no longer draining fluid from his lungs....they thought that they had to adjust his tube and that it had somehow missed the fluid. They tried for 2 days to find fluid and when they couldn't the tube came out on tuesday. That's 5 days.....not 6 weeks!!! Sam had a lot to accomplish if we were going to meet the goal of going home by Friday......I got to work and so did sam. While we were trying accomplish some things to be able to bring him home...we were able to let his brothers hold him for the first time...no more tubes....this was a big deal and we were so excited to bring the boys to the hospital so they could cuddle their brother. The biggest hurdle was the IV meds. Sam was no longer on any central lines or pic lines because the infectious disease doctors said it was way to risky. He was getting his medications by IV which only staff could do...his IV's often came out and he was poked and prodded so much that he began to cry constantly. This was not good because he was burning all of his calories and not gaining weight. There was still a lot to do before he would be released, but for now we were enjoying Sam without all of the tubes hanging from him. I wasn't focused on that I was just so glad that God had answered what seemed to me to be the biggest hurdle...we would tackle the rest another day.

WHEN ALL SEEMS LOST....GOD IS STILL THERE

Sam is 3 1/2 weeks old. He is getting stronger and he was taken off of the breathing machine, he was just on oxygen. His chest was healing very nicely...still had the chest tube and the IV meds, but he is looking really good.

The following weeks after Sam's surgery were very hard....full of post-op complications and I had hit rock bottom emotionally. I think the staff even wrote about it in Sam's reports.....that's how bad it was. I had a hard time accepting all of Sam's complications. I knew they were real, but there was no way that I could accept the fact that Sam was going to be in the hospital for another 12 weeks.....I couldn't do it. Rod and I watched other families with sick babies try and cope as best they could.....until you are in this situation it really is just somebody Else's life....it is not real. I was longing to hold Sam and just be his mom and watch him grow and smile and hold my finger. All of those simple little things that we take for granted were just not possible for us at that moment. After we had heard all of the bad news I went home and sat in Sam's nursery and stared at the empty crib and just cried.

Sam was getting stronger, his heart was healing, he was on IV meds for the infection and he had a chest tube that was draining fluid from around his lungs. They were beginning to wean him off of some of the medication that he was on and when he was 3 and half weeks old they took him off of the breathing machine. He was just on oxygen. All of this was good news. I was even able to start to hold him again.....all of which should have been enough for me, but it wasn't.....with the chest tube still in and draining off fluid.....they told us to prepare for another 12 weeks of being in the hospital. We had 3 other boys at home who were living a very different life. Rod had to go back to work....I was thankful that CBC gave Rod quite a bit of time off after Sam was born. We tried to come up with a plan that worked for us....so between visits to the hospital and trying to be parents at home, it all became very exhausting. I could tell it was starting to affect them...especially Kyle. I had sent my mom back home to Saskatchewan because I wanted her to be able to come back when they released Sam from the hospital....whenever that would be was anybody's guess. It was at this point that I went home one night after being at the hospital and was totally exhausted, but very much trusting that God was going to hear my prayer......I just wanted Sam to come home. There was one nurse...actually she was more then a nurse, but I forget her title, anyway we didn't always see eye-to-eye. She was always the one who delivered the bad news to me and she was very cold about it when she did....I know it was her job, but she always gave worse case scenario and they was never any room for hope or the possibility of a miracle. I really felt strongly that God was going to answer my prayer. I didn't know how because there was so many obstacles that Sam had to overcome that the mountain seemed impossible to climb.......in the days to come it would be this very nurse that gave me such a hard time that God would use to make a miracle happen......when all seems lost God is still there!!!

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