Mackenzie's Story
We were overjoyed when we found out that we were pregnant. We had been trying for over a year with no results, finally that day came when the home test came back positive. I was so stunned that I asked my husband to take one just to make sure that the tests really worked. Thank goodness he wasn't pregnant...for more than one reason! Anyway when I was 18 weeks pregnant we were told the great news that it was going to be a girl....followed by there's a problem with the babies heart. We went from cloud nine to devastated in a breath. At that time we were not given much hope that Mackenzie would make it. After a very long 6 weeks of going for ultrasounds and hearing well lets wait and see....we finally got an appointment with Dr. Twortezky at Children's hospital in Boston, when we finally received the confirmation that our little girl would be born with HLHS we started to do research and a lot more praying. Knowing that we were in GREAT hands in Boston I was able to somewhat enjoy my otherwise normal pregnancy. As the time got close to be induced the anxiety came back and I did a lot of crying and praying and that was about all I did! Finally the day came, 9/15/08 Mackenzie was born at 7:26pm she came into this world with a hearty scream and a head full of black hair! Weighing 6lbs 4oz. It was the best feeling in the world to hold her in my arms for the first time. I was only able to hold my precious girl for a few minutes before she was whisked away to Children's where she would await her first surgery. During her echo just hours after she was born they found that she had fistulas in her LV. They said that if there were a lot of the fistulas they would not be able to do the Norwood but instead they would do the hybrid procedure, which would have gotten her out of the hospital earlier but would have made the second surgery much more risky. Thank goodness the cath showed the fistulas to not be bad and they could proceed with the surgery.. On September 19th only 4 days after she was born she was wheeled into surgery at 2pm by 9 that night she was finally back in her room. Our Surgeon Dr. Emanie came in and told us that she did great and that they were going to close her chest while she was in surgery (which never happens, they usually keep the chest open for at least 3 days to watch for swelling and if they needed to get in for reason they would be able to get in fast) He didn't because her platelets went a little crazy. Anyway the next morning (Saturday) Dr. Emainie came in and closed her chest. From there she was a champ on the road to recovery...that was until they removed the breathing tube, her lung collapsed and they had to do Chest PT and use the CPAP it did finally come back a few days later, almost all her tubes were removed and she just had a small bandage on her incision, the last things that needed to come out were the pacing wires and the line in her heart. When they pulled the line her heart did not close around the hole and it bled out into her lungs, that was the scariest thing I had ever seen, we almost lost our little one that we fought so hard for. within a matter of seconds the room was full of doctors and nurses working on Mackenzie to get the blood out of her chest. We had taken 2 steps forward and a giant leap back. She did recover from this very well though..she is definitely my hero! And by the 29th we were on the floor..yeah...By October 4th we were on our way home and Mackenzie was doing great.
The next couple months were uneventful we had a couple colds and some ear infections but all in all she was great, gaining weight like she was suppose to and eating well. I could not have been happier.. When the time came at the beginning of March to go for her second cardiac cath we thought nothing of it. We were ready to spend a few days at Children's and head home until the end of the month for surgery. Unfortunately while she was having her cath they saw some collateral's that they needed to coil off to prepare her for the surgery, but when they did that he stats dropped way down into the 50's so they had to keep her inti-bated and decided to just proceed with the surgery, so on March 5th we had to say goodbye to our baby again while she went in for her second surgery. She sailed through it... although we were told that she did need a lot of anesthesia because she did not want to go out for the surgery, but we figured that would happen because that is just her personality! 5 days later we were home.
We are hoping that this is the last time she will need to be in the hospital until her next surgery in 2 years.
Thanks,
Tammie mom to Mackenzie