I met with my perinatologist and the pediatric cardiologist a couple days ago and they did an ultrasound and fetal echo on the twins. The diagnosis for our twin girl is still the same for Hypoplastic Left Heart Syndrome and we will be planning to fly down to Seattle to have the twins so she can have her first open heart surgery within a week of being born.
Our little boy twin also has larger kidneys than normal and may possibly need surgery on his kidneys also. They won't know for sure if he will need surgery until I'm closer to my due date. But the good thing is that his surgery and condition are way simpler than our twin girls with a way way better success rate.
I will have another appointment in four weeks and they will look at the babies again and start deciding when I should go down to Seattle. It's going to be a long four weeks for sure.
Wednesday, August 15, 2012
Friday, August 10, 2012
3 days till our appointment
I've been waiting very anxiously and impatiently for five weeks to see my doctor and the pediatric cardiologist and finally get some answers. Monday is our appointment and I'm so glad it's almost here.
We had originally planned a diaper party for this Sunday and decided too go ahead with it and just told people that since I could be out of state to give gift cards instead of diapers and wipes since I can't pack them. I'm always worried about offending people, but in this situation I have to be clear in what we need.
The closer we get to the appointment and the day these babies are born the more I worry about everything. How we are going to pay for Brandon's travel and the extra ticket for our daughter Olivia when we are able to bring the babies home. I also worry about if I have to stay in California for months in between the surgeries and where we will stay and how we can afford it and not lose our house. Trying to find someone to come with me while I wait to have the babies and help with Olivia and also if I'm able to at least stay in Anchorage between the first two surgeries, how we can afford that too. I know that if she can leave the hospital she won't be aloud to be far away from a cardiologist so going home is not an option.
Finances are my biggest worry just after the twin's health. I just hope and pray everything works out and maybe we can miraculously get good news on Monday.
We had originally planned a diaper party for this Sunday and decided too go ahead with it and just told people that since I could be out of state to give gift cards instead of diapers and wipes since I can't pack them. I'm always worried about offending people, but in this situation I have to be clear in what we need.
The closer we get to the appointment and the day these babies are born the more I worry about everything. How we are going to pay for Brandon's travel and the extra ticket for our daughter Olivia when we are able to bring the babies home. I also worry about if I have to stay in California for months in between the surgeries and where we will stay and how we can afford it and not lose our house. Trying to find someone to come with me while I wait to have the babies and help with Olivia and also if I'm able to at least stay in Anchorage between the first two surgeries, how we can afford that too. I know that if she can leave the hospital she won't be aloud to be far away from a cardiologist so going home is not an option.
Finances are my biggest worry just after the twin's health. I just hope and pray everything works out and maybe we can miraculously get good news on Monday.
Sunday, July 29, 2012
A little hope
I decided to call a pediatric cardiologist in Anchorage that I had heard wonderful things about, and asked the receptionist if he or his partner could call me and give me more info on hlhs and what to expect. Less than 10 minutes later I got a phone call from the doctor and he talked to me for 40 minutes.
If the diagnosis stays the same and it is hlhs, since I'm having twins and they are normally born smaller than singletons, I would need to go to the best doctor I could on the west coast. I'm so thankful for that because I wanted the best for my baby. So when I have my appointment in two weeks with my doctor and the other pediatric cardiologist I can argue my point about needing to be referred to Dr. Hanley in California.
Knowing that if she really has hlhs that we will be in the care of one of the best pediatric surgeons in the country makes me feel a lot more hopeful that she will have a chance at a longer fuller life.
Now I just have to wait two more weeks. My poor daughter Olivia is getting tired of being stuck in the house all the time, as am I. I was told not to pick her up more than I need to and not to carry groceries or heavy things up and down the stairs. So I really can't do much other than hang out at home without help with my daughter. So needless to say we are both bored and she is constantly erring into stuff cause she isn't out and about like we normally would be.
If the diagnosis stays the same and it is hlhs, since I'm having twins and they are normally born smaller than singletons, I would need to go to the best doctor I could on the west coast. I'm so thankful for that because I wanted the best for my baby. So when I have my appointment in two weeks with my doctor and the other pediatric cardiologist I can argue my point about needing to be referred to Dr. Hanley in California.
Knowing that if she really has hlhs that we will be in the care of one of the best pediatric surgeons in the country makes me feel a lot more hopeful that she will have a chance at a longer fuller life.
Now I just have to wait two more weeks. My poor daughter Olivia is getting tired of being stuck in the house all the time, as am I. I was told not to pick her up more than I need to and not to carry groceries or heavy things up and down the stairs. So I really can't do much other than hang out at home without help with my daughter. So needless to say we are both bored and she is constantly erring into stuff cause she isn't out and about like we normally would be.
Friday, July 27, 2012
Am I dreaming?
I wake up in the morning half expecting to wake up from this dream to find that I'm having healthy babies, or that I'm only having one baby since its still surreal that we are having twins. It's just hard to imagine having a baby that's going to be fighting for life from the moment they are born.
I have no idea how severe her condition will be until after my appointment in a little over two weeks, and may not know till she is born, but it gives me comfort knowing that my little boy could come out healthy and be some comfort while we are going through all of this.
Every day now I look at my daughter Olivia and am so thankful that she is the healthy terror that she is. As much trouble as she likes to get into now a days, she's perfect, and I took that for granted.
I have no idea how severe her condition will be until after my appointment in a little over two weeks, and may not know till she is born, but it gives me comfort knowing that my little boy could come out healthy and be some comfort while we are going through all of this.
Every day now I look at my daughter Olivia and am so thankful that she is the healthy terror that she is. As much trouble as she likes to get into now a days, she's perfect, and I took that for granted.
Tuesday, July 24, 2012
The Shock of Finding Out
I'm Laura, and am married to an amazing husband and have a beautiful little girl named Olivia who is 14 months old. We live in beautiful Valdez Alaska, and found out months ago we were going to be adding to our little family. Then at 18 weeks we had our first ultrasound and found out that were going to be having twins! It was shocking and took a little while to sink in until I moved into my preparation mode. We had everything we needed for one more baby except boy clothes, so I started collecting everything I would need for twins. We were having a boy and a girl!
At 20 weeks I went to Anchorage and met with maternal fetal medicine specialist and had a more detailed ultrasound done there too. We then got even more shocking news, the little girl (twin b) has a very serious heart condition called Hypoplastic Left Heart Syndrome (HLHS). She didn't give much information on the condition, other than that she would need to have surgery.
After telling Brandon he looked it up online and I've connected with other mom's that have babies and children with HLHS and have found out that depending on how severe her condition is, she will need to be born out of state, and also need three surgeries, one within the first few days of being born, one at 4 months, and one later on around 3 to 5 years of age. Since they don't do the surgeries here, I could be out of state for months while she recovers and possibly through till after the second surgery.
I am 22 weeks along now, and we meet with a pediatric cardiologist in three weeks to see how severe her condition is. She may not be eligible for the surgeries, but we won't know how good or bad it looks till we see the cardiologist and make plans from there.
We have had a rough couple weeks thinking about everything, and not knowing anything for sure. I'll keep you updated on what we know as we find out, but please keep us in your prayers. Its devastating thinking of losing a child or thinking of all the pain and hardships she will endure in life just to survive as soon as she is born.
Thank you for your thoughts and prayers.
At 20 weeks I went to Anchorage and met with maternal fetal medicine specialist and had a more detailed ultrasound done there too. We then got even more shocking news, the little girl (twin b) has a very serious heart condition called Hypoplastic Left Heart Syndrome (HLHS). She didn't give much information on the condition, other than that she would need to have surgery.
After telling Brandon he looked it up online and I've connected with other mom's that have babies and children with HLHS and have found out that depending on how severe her condition is, she will need to be born out of state, and also need three surgeries, one within the first few days of being born, one at 4 months, and one later on around 3 to 5 years of age. Since they don't do the surgeries here, I could be out of state for months while she recovers and possibly through till after the second surgery.
I am 22 weeks along now, and we meet with a pediatric cardiologist in three weeks to see how severe her condition is. She may not be eligible for the surgeries, but we won't know how good or bad it looks till we see the cardiologist and make plans from there.
We have had a rough couple weeks thinking about everything, and not knowing anything for sure. I'll keep you updated on what we know as we find out, but please keep us in your prayers. Its devastating thinking of losing a child or thinking of all the pain and hardships she will endure in life just to survive as soon as she is born.
Thank you for your thoughts and prayers.
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