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.
Sunday, July 29, 2012
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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