Every heart family has a story, and I must say from reading a lot of them we all have so very much in common. Although the diagnosis may be different and all alphabet soup, the feelings and emotions are the same. "What? My baby has what?" whether you find out at an ultrasound, or I think even worse after your baby is born, you are just overwhelmed by it all. But somehow faith gets you thru.
This is our story. March 12, 2009, my sister's birthday and the day of our "big" ultrasound. Even though we weren't finding out the sex, we were excited to see how our little one had grown. The appointment was late in the afternoon, so I didn't have to take too much time off of work. I was saving my sick leave and vacation for my maternity leave since we don't get paid maternity leave where I work.
The tech was chatty and everything seemed rather uneventful. Then the tech said she needed to step out and for me to lay on my side to see if we could get the baby to turn a bit. We only waited a few minutes before a dr. came in and said she was taking over as they were running behind and the tech needed to get started on another patient. Then she asked why I was laying on my side. I told her and she said "well roll back over and let me check the baby" and after what seemed to be 3 seconds of scanning she said "mm, mm" told me to wipe the gel off and as I sat up said "your baby has a heart defect - it's either Truncus Arteriosus or something else, but it's totally fixable. Can you come back tomorrow for more scanning? We are running behind and don't have time to do more scanning today" "What?? My baby has what?" I said "well I have a heart murmur, is it like that?" She said "No it's more serious than that but you shouldn't worry" and she patted me on the hand.
Fast forward, we decided follow up with pediatric cardiology at the University of Michigan the next month and transfer my care into their hands. They were so much more compassionate and caring than the hospital we were at in March. I'm so glad we made that move, as the original hospital had said they could continue to follow my case and would then turn us over to U of M at 32 weeks. We didn't make it to 32 weeks. At the beginning of May I was hospitalized for a kidney infection and then move into full blown pre-eclampsia. I was transferred up to U of M at 28 weeks 5 days and remained there on bedrest until Laura was born at 31 weeks. She weighed 3 lb. 1 oz. and was 15" long. And she was beautiful. And so small. And our doctors said they would work very hard to get her big enough to have heart surgery.
So we rode the NICU train for 7 weeks, watching and waiting for Laura to grow. We had some scares where she stopped breathing, sometimes for no reason at all but she was only vented for about 10 hours when she was first born. Finally she was showing signs that she was growing tired and she couldn't wait for her surgery any longer. On July 16, 2009 Dr. Bove took our baby to the operating room and performed the miracle we had so desperately waited for. He came to us and said the surgery was beyond his expectations and we could see Laura very soon. When the time finally came, we were stopped short by another dr. - Laura had too much pressure building in her chest and they were doing emergency surgery at her bedside to open her chest again to relieve the pressure. We didn't know it then but we almost lost our sweet baby as she was bleeding out.
After a few days, her swelling went down and her chest was closed, her vent was removed and only 3 weeks after surgery we were on our way home for the very first time. We weren't prepared! My husband, Craig had to rush home in the few days before discharge to paint the nursery and put together the crib and dresser. I bought the mattress the night before she came home. We had great hope that this day would come but were so fearful that it wouldn't and we couldn't face looking at a nursery with no baby in it, so we put off everything.
August 6th, Laura was finally home. No more nurses or beeping machines, just Mommy and Daddy and 2 furry siblings to watch her, and take care of her. And so far we have been very lucky. Laura has not had any major illnesses, in fact she only got her first ear infection a week before her first birthday. We can *almost* live a normal life. I know it's always in the back of my mind, wondering when the next surgery will be. She does have Truncus, one of the rarer CHD's, and she'll need probably 3 more surgeries as she grows but with new technologies being used every day we're hoping that maybe we can avoid a few full blow open heart surgeries.
This is our story. March 12, 2009, my sister's birthday and the day of our "big" ultrasound. Even though we weren't finding out the sex, we were excited to see how our little one had grown. The appointment was late in the afternoon, so I didn't have to take too much time off of work. I was saving my sick leave and vacation for my maternity leave since we don't get paid maternity leave where I work.
The tech was chatty and everything seemed rather uneventful. Then the tech said she needed to step out and for me to lay on my side to see if we could get the baby to turn a bit. We only waited a few minutes before a dr. came in and said she was taking over as they were running behind and the tech needed to get started on another patient. Then she asked why I was laying on my side. I told her and she said "well roll back over and let me check the baby" and after what seemed to be 3 seconds of scanning she said "mm, mm" told me to wipe the gel off and as I sat up said "your baby has a heart defect - it's either Truncus Arteriosus or something else, but it's totally fixable. Can you come back tomorrow for more scanning? We are running behind and don't have time to do more scanning today" "What?? My baby has what?" I said "well I have a heart murmur, is it like that?" She said "No it's more serious than that but you shouldn't worry" and she patted me on the hand.
Fast forward, we decided follow up with pediatric cardiology at the University of Michigan the next month and transfer my care into their hands. They were so much more compassionate and caring than the hospital we were at in March. I'm so glad we made that move, as the original hospital had said they could continue to follow my case and would then turn us over to U of M at 32 weeks. We didn't make it to 32 weeks. At the beginning of May I was hospitalized for a kidney infection and then move into full blown pre-eclampsia. I was transferred up to U of M at 28 weeks 5 days and remained there on bedrest until Laura was born at 31 weeks. She weighed 3 lb. 1 oz. and was 15" long. And she was beautiful. And so small. And our doctors said they would work very hard to get her big enough to have heart surgery.
So we rode the NICU train for 7 weeks, watching and waiting for Laura to grow. We had some scares where she stopped breathing, sometimes for no reason at all but she was only vented for about 10 hours when she was first born. Finally she was showing signs that she was growing tired and she couldn't wait for her surgery any longer. On July 16, 2009 Dr. Bove took our baby to the operating room and performed the miracle we had so desperately waited for. He came to us and said the surgery was beyond his expectations and we could see Laura very soon. When the time finally came, we were stopped short by another dr. - Laura had too much pressure building in her chest and they were doing emergency surgery at her bedside to open her chest again to relieve the pressure. We didn't know it then but we almost lost our sweet baby as she was bleeding out.
After a few days, her swelling went down and her chest was closed, her vent was removed and only 3 weeks after surgery we were on our way home for the very first time. We weren't prepared! My husband, Craig had to rush home in the few days before discharge to paint the nursery and put together the crib and dresser. I bought the mattress the night before she came home. We had great hope that this day would come but were so fearful that it wouldn't and we couldn't face looking at a nursery with no baby in it, so we put off everything.
August 6th, Laura was finally home. No more nurses or beeping machines, just Mommy and Daddy and 2 furry siblings to watch her, and take care of her. And so far we have been very lucky. Laura has not had any major illnesses, in fact she only got her first ear infection a week before her first birthday. We can *almost* live a normal life. I know it's always in the back of my mind, wondering when the next surgery will be. She does have Truncus, one of the rarer CHD's, and she'll need probably 3 more surgeries as she grows but with new technologies being used every day we're hoping that maybe we can avoid a few full blow open heart surgeries.
2 comments:
Thank you for sharing Laura's story and joining my blog event.
It is great to read that she is doing so well!
What a story...such a little sweetie. The day to day seems to get easier, but I don't think any of us really forget that our little ones may/will need another surgery.
Laura is adorable and I know she loves being home.
I will keep all of you in my thoughts and prayers.
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