Wednesday, September 28, 2011

Tyson ~The Fighter~

This post is going to be another long one... Sorry again ;)
Also, I will be including a few pictures from Tyson's hospital time that may make a few people squeamish. I've kept out some of the more gruesome pictures, but this is what our sweet boy looked like and I wanted to share that.

January 8, 2009 started out with a very early morning. I was 35 weeks pregnant and had a regular obstetric appointment later in the afternoon, but for some reason I was up when there was still a 5 on the clock! ;)
I felt enticed to pack my hospital bags. I was trying to save it for another few weeks just because it would give me something to do closer to “the time”, but God got me up out of bed way to early with my mission. So, I packed my bags. After my bags were packed I was feeling very unsettled. I woke up feeling that way but I thought after I was done packing I would feel better. No such luck. I felt so anxious, I couldn’t relax.
Finally around 12:30 hubby came home from work because he wanted to be there for the appointment. The kids and I made our way to the van while hubby lugged the hospital bags out. We were backing out of the driveway when he said “Did you think to pack for the boys?” No, I hadn’t. Well that’s not true, I did think about it, but again I wanted to have something to do closer to “the time”. Mike thought it would be best if we quickly grabbed a few things for the boys even though we were already running behind, so I grabbed the necessities and we were off!

Once we got to the doctors office I was still feeling really anxious. I remember when I went to the washroom to do the always lovely urine test, I was praying. “Lord, something doesn’t feel right. I feel anxious and off today. Please, if something is wrong with me or the baby let the doctor pick up on it.” The first clue came when the nurse weighed me. I was down 15 pounds in two weeks – over the Christmas season where there was no shortage of delicious foods and treats. Hmm… weird. Then the doctor joined us. It was our family’s favorite time of the appointment; we were going to hear the heart beat! But as soon as the Doppler was on my stomach I knew something was wrong. In 3 pregnancies I had never heard a baby’s heart beat THAT fast. I could see the concern on the doctor’s face. She said the heart rate was too fast to count. She asked me to lie down and relax a few minutes and that she would try again. Maybe he had just done a big movement in me that increased his heart rate? But in a few minutes when she checked, the results were the same. It was time to head to the hospital for a non-stress test.
Thankfully my parents live nearby and my mom was able to leave work and meet us at her house to take our older boys. Hmm, that overnight bag is sure going to come in handy now!

We made our way up to the labor/delivery floor of the hospital where the nurse hooked me up to the monitor. Immediately the alarms were going off. She explained that the monitors trace as high as 250bpm (beats per minute) and his was too high for the machine to trace. Within seconds there was a team of at least 5 doctors in the room with an ultra-sound machine. They wanted to make sure it was in fact the baby’s heart and not that the machine was picking up a combination of both of our heart rates. It was the baby’s. I was taken in immediately for an emergency c-section. It all happened so fast. Our original doctor’s appointment was at 1:30, I don’t remember what time we got to the hospital, but Tyson was born by 3:15pm.
A very quick look at our sweet new boy, before he was taken to the NICU (neo-natal intensive care unit).

The doctors had no idea what was wrong with Tyson. His little heart was still racing. Sitting between 200-300bpm. I was still stuck in my postpartum room recovering from the c-section and couldn't see him, so Mike and the doctor would go back and forth to try and fill me in one how he was doing. I remember that finally at almost midnight the nurse could finally take me over to the NICU in my wheelchair to see Tyson. This was the first time I could actually LOOK at him. I just sat there and stared. I don't know for how long. He looked so perfect. How could his body not be working?
Through the night Tyson didn't do so well. By morning it was obvious to the doctors that he needed to be transferred to a hospital with a higher level intensive care where there were cardiologists around 24/7. So the Neo-Natal transfer team came and took him to another hospital in the city. Hubby went with Tyson, I filled out the forms to release myself. No way was I staying in the hospital with my baby leaving.

-First time I was allowed to hold Tyson, 5 days old!

Days went by without any doctor being able to figure out what was going on. They were calling the problem Atrial Flutter, but there were no meds that would work for him. He was having to be cardio-verted daily (the panels on your chest to re-start your heart) and one day had it done multiple times. Nothing was working for our sweet boy, and during the night on January 19 Tyson went into heart failure. We were called into the hospital (parents can not stay over night on this unit) and it was the longest 1 hour drive EVER! The neo-natologist that was caring for Tyson met us outside of the unit before we could see him to let us know what was going on. Because his heart could no longer pump blood properly and was racing so fast his lower organs and limbs were suffering. He was having internal bleeding, his lungs were full of water and they STILL had no idea why this was happening. By this point in our journey they doctors and specialists were already consulting with other cardiologists from all over north America. Nobody had heard of this happening this way. Usually these symptoms were given a diagnosis pretty quickly. Finally Dr.Patton (Ty's cardiologist and just an amazing man)came to preform an ECHO (heart ultrasound) himself. Ty had at least 1 a day since being born, mostly by the techs. It was at this point he could finally see what was happening. Tyson had a Corarctation of the aorta, this means his aorta (your main artery) was narrowing. Typically a newborns aorta measures around 6-7mm wide. Tyson's was less then 2mm, and closing. And because each baby is born with a hole in their heart that naturally closes after a few weeks called a 'ductus' they couldn't see the problem. Tyson's ductus still being open was actually what was keeping him alive. But, it had now closed. Hence the heart failure. The artery was now too narrowed to supply blood to his entire lower body. Tyson would need heart surgery ASAP, but in a different city. But because he was so unstable, they couldn't fly him. There was one choice left. There is a drug that if administered soon after the ductus closes, it can re-open it. The doctor explained that this was our last hope. If this drug couldn't work, Tyson would not make it through another night. It was a long shot, because generally the babies that they use this on are premature and when their ductus begins closing too early, they can use the meds. On a almost full term baby who's ductus was already closed, they couldn't predict an out come. The drug was administered into a main artery with the ultrasound machine on his heart. If this was going to work it would be within 15 minutes, and they would see the change happen. With my husband and I beside Tyson's bassinet, and about 15 doctors and nurses surrounding us we waited. I have never in my life prayed as hard as I did in that time waiting. And I will never, ever forget the sounds of the doctors sighs of relief when they all watched Tyson's ductus re-open in front of their eyes. It was a miracle! Tyson was far from safe still, but at least now there was hope to make the trip to the Stollery Children's hospital in Edmonton, Alberta where they preform the serious pediatric heart surgeries.
Tyson, about 15 minutes after having his ductus re-opened!

We finally made our way to Edmonton a few days later when Tyson was stable enough to fly. We had an amazing surgeon explain what needed done, and also explained that there were a few other "small" issues with Tyson's heart. Nothing that is effecting him at the moment, but later in life can become a problem. They were going to attempt to go in through Tyson's back, between ribs to preform his surgery. It would mean a better recovery, but also makes it easier for future open heart surgeries to not have to go through scar tissue. He assured us that he would do everything he could possibly do to fix the problem at hand. And, he did! Tyson made it through his first surgery at 22 days old, and everything went beautifully! He still had a long road to recovery, and still would need time in the NICU, but our beautiful baby boy was no longer struggling to hold on to life.

First cuddle a few days after surgery!

Tyson had a few more weeks of time in the NICU where he healed and gained a bit of weight. And then, finally after 6 long weeks we got to bring him home!
Our beautiful boy, and his beautiful scar.

God has big plans for Tyson. I can just feel it. His rough times, and his medical problems are far from over, we still are dealing with new issues all the time. But I can see God working in this little boy, who is now over 2 and a half! He has surpassed every single doctors expectations. He has someone much "bigger" working on him!

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  1. Thank you so much! God sure is amazing, not a day goes by where I don't see living proof! :)

  2. What a miracle! Enjoyed reading his story today. :-)