Wednesday, March 16, 2011

Alexanders Story- Another HLHS warrior

                                     Told by Erika, Alexanders mommy.
My husband and I were so excited to find out we were expecting our first child. I was due November 15/2008. Everything was going great, no morning sickness, no weird cravings (although I did have 4 different types of ice cream in my freezer at any given time), the heart beat sounded great, nothing to indicate that anything was wrong. I saw my family Dr. first so she could refer me to an OBGyn, at that time she asked if I would like an ultrasound at 12 weeks. I said no everything should be good. So 12 weeks came and went and my appointments with the OBGyn, Dr. McMeekan-Down were going fine. She scheduled me for the routine 20 week ultrasound. The day that changed our lives forever and one that I will NEVER forget.

My husband, Ed, is a joker. While we were at the ultrasound, he asking all these silly questions like it only has 1 head and such. It was going fine, until she uttered the words I'm having trouble seeing the heart. We figured it was because she was fairly new, she had to get someone else to help her. So now there were two ladies staring at the machine and trying to get the baby to move so they could get a better look. Finally the more expierenced one said they wanted to take me to a different machine that had more technology that they could see more on it. Well they looked some more and this time the second lady went to go get the big radiologist that looks at all the ultrasounds after they are done. So now there are three of them standing around this machine trying to see what they can for a heart. I just laid there staring at Ed with tears rolling down my face. The silence was immense.

After much time they finally turned the lights back on and left us with the radiologist. He brought us a sheet of paper with a diagram of a heart on it, and proceeded to tell us that our baby had a heart problem. It is called Hypo-Plastic Left Heart Syndrome. We were told that I would have to go to a high risk OBGyn now and that there were no Dr.s where we are that can help the baby. I asked if it could be fixed before the birth and was told they only do that in the US. We were also told that there are no Dr.s where we live that can help the baby and I would need to deliver in a different city, about 2 1/2 hours from where we live. He also said that the surgery would be done in a different province about 10 hours from where we are. We left in a daze.

The first thing I did when I got home was google hypo-plstic left heart syndrome. I got as much information on it as I could before I saw my Dr. the next day. I didn't stay very long as there wasn't much she could or say. We put in a request to a high risk OBGyn, Dr. Cardoso. I anxiously waited for his office phone me at home. My first appointment with him was about 1 week after finding out. Because I was so far along already they needed to do all sorts of tests to see if there was anything else wrong with the baby. One of them being an amnio. This is where they stick a huge neddle in your stomach and pull out amniotic fluid. We had to wait for the results, to see if our baby had down syndrome, or other disorders that would not allow it to survive. I hated waiting.

The results came back normal. YAY!!! We carried on with the pregnancy, and met the pediatric cardiologist from Saskatoon. They do a clinc in regina, (where we live), the first and third Thursday of every month. Ed wa not able to come with me so my mom did. He did an Echo the best he could while I was pregnant. He went over our options, either get 3 surgeries done once the baby was born that would allow it to live, comapsionate care where we have the baby and do nothing or terminate. Well terminate and compassionate care were not even options inour mind for us. We would go with the surgeries.

The hardest thing for us to do was to still be excited about having a baby. We sometimes had to force ourselves to by baby stuff, like a stroller, carseat, even the crib I ordered was delivered 2 weeks before my due date. We tried to carry on with it as a normal pregnancy, but it was really hard. As it got closer to my due date, we had to take a drive up to Saskatoon where I was to be induced to pick a date and meet the Dr. there. She wanted me to go as far along as possible but still have time to induce me. They didn't want me going into labour on my own as we didn't live there and would have to go to our hospital first to see if we could make it to Saskatoon before the baby was born. We picked November 5 to be induced. The day after my father in law had his birthday and before my sister in law had hers.

We went out for supper on Nov. 2 for my father in law 60th birthday. Later that evening I went into labor. We still had to pack everything for our trip to Saskatoon/Edmonton and now were rushed. First we went to the hospital here to see how far along I was and we had plenty of time to get to Saskatoon. We came home packed called my sister on the way home so she could meet us there since she was house/dog sitting. We left the city around 12:30am and made it to Saskatoon by about 2:30am. We got to the hospital and they kept me for 4 hours then since I was dialated enough sent us away. Good thing there is a Ronald McDonald house in Saskatoon as that is where we were going to be staying. We went back around 1pm and again they only kept me for 4 hours. Finally at 11pm we went and I got to stay.

I was in labor for 44 hours before Alexander was born, November 4/2008 which happened to be my father in law 60th birthday!! I never got to hold him when he came out, he was to blue for that. I got to touch his little cheek and told him I love him, then he was gone. It would be 4 hours before we got to see him. He weighed 6lbs 11ozs and was 19.5 inches long.  Alexander was doing great for the first day. On the second night he quit breathing a few times so they had to put in a breathing tube.

We were in Saskatoon for a week before they air lifted Alexander to Edmonton. Ed and I thought about me going with him but decided it would be best if I went with Ed so he didn't have to drive alone, (it is about 5 hours to Edmonton from Saskatoon). It was a long drive, but once Alexander landed and got settled in th N.I.C.U. the nurse phoned us to let us know, which made the rest of the trip easier. Once we got there they told us that they had paralyzed him to take full control of his oxygen. It was the worst thing in the world, because he did not move, he didn't react when we tried to tickle his feet, nothing.

He was again in the N.I.C.U. for almost a week before he had his first open heart surgery. He was 13 days old. From there he was put in the P.I.C.U. He was so puffy and swollen, it did not look like him at all. Alexander was in the P.I.C.U. for only a week before being moved back to the N.I.C.U. from there things started moving a little faster. Once his breathing tube came out on November 25 we got to hold him for the first time ever. He was 3 weeks old. We would only be in Edmonton until the end of the week. That Saturday they air lifted him back to Saskatoon. We spent 2 more weeks there and then he was send by road ambulance to Regina.

Alexander's biggest problem was feeding. He did not know or have any desire to suck on a bottle. We had to try and feed him for 30 minutes from the bottle and the rest we gave to him through his feeding tube. It was hard and frustrating for all of us. We were at the hospital in Regina for only 2 weeks and then we got to bring him home for good. YAY!!! He was 8 weeks old. Funny enough it was on December 30, just in time for the New Year.

He still ahd the feeding tube and we were shown how to change it since this would need to be done once a month. We invited family over the first of February since we had his tube out and it would be a great chance to take some pictures without it in. We did this again on March first. I convinced my husband to let me try to feed him without his tube in for one feeding, (he was on a strict schedule for feedings, every 3 hours even through the night). Well he ate the whole thing in less than the 30 minutes we gave him. So I told Ed we were not putting that stupid tube back in. It was liberating. I fed him less at a time but more frequently, which helped him to gain weight and grow.

Alexander had regular Echos done, and in march we got the call to say his next surgery was going to be April 13/2009. It was hard to believe the time had come again so soon. We packed everything up and since they needed to do some tests before his surgery we had to be there for Thursday as Friday was Good Friday. Well we got there and then Monday morning came and his surgery was cancelled, it did not get done until Wednesday April 15. Everything went good. The next day though they were doing a routine chest x-ray and saw some fluid build up behind his heart, so they had to rush him back to the OR to have it removed. Thankfully they got it all and there were no more issues.

Alexander was doing so well after his second surgery he was sent home just 6 days after having the procedure done. We were so proud of him and yet worried the Dr.s were sending him home too soon. But things went great and he became stronger and healthier. You would never know anything was wrong with him. His only issue was walking, it took him forever to walk. he was 19 months before he started to walk by himself. When he was 16.5 months old he became a big brother. He has embraced this role greatly. He is the most helpful, caring, amazing big brother ever. Even if his little brother is almost the same size as him.

Alexander jus had his Heart Cath done on March 4/2011. Dr. K is a little concerned as his chest/lung pressure was 19 and the cut off they like to have it at is 18. Also his sugars were low at 2.5. Dr. K was amazing as usual and put some dye into Alexander's kidneys as he has always had high blood pressure and no one knows why. It has nothing to do with his heart. So Dr. K gave the results to a new Dr., Dr. Robinson, and he came to talk to us shortly after. It looks like Alexander is missing a big artery that is supposed to go to the kidney and has a few amsll ones instead. The kidney is getting enough blood, but it doesn't think it is. Therefore it is causing the high blood pressure. Right now Aelxander is on medication to treat the high blood pressure but Dr. Robinson wants to put him on meds to treat the kidney. Go to the source of the problem instead of the side effect.

Right now we are waiting to here from both Dr.s as Dr. K has conference with Edmonton about the cath results, and Dr. Robinson is waiting for results from boold work and a urine sample. I will let you know more when we find out. You can also check out his page at

1 comment:

  1. Here you are really share your experienced very difficult situation. As a mother you are really strong and courageous. I am impressed with your daring. I hope and pray all will be well for you and your family.