Hard to believe that Kate will be here in 64 days! We still have so much to do in preparation..guess we better get working on that! There's nothing new to report on her condition (yay no appts until next week), but I found this blog of a little boy who just went through his first surgery and is doing great at home after only 20 days in the hospital after birth. I found it so uplifting and had to share. We pray that Kate has a similar experience.
http://www.iheartsantiago.com/
Tuesday, April 24, 2012
Thursday, April 19, 2012
No! You can't see my face mommy!
Let me start out by saying - I'm already tired of going to the hospital and Dr.'s appts. And I have many, many more until Kate makes her big arrival. 2.5 hours at the doctor's is not the way I would like to spend my 5 hours while Jacob is at school! But on a good note, Kate's growth looks good. At 29.5 weeks, she is measuring ~ 2lb 13oz. I got a few ultrasound pics but none of her face again..she is so stubborn!
I also had a fetal cardio ultrasound and there wasn't much change from 4 weeks ago. We were informed that Kate might not have a bypass from her underdeveloped left side to the right side, so she might need intervention as soon as she is born. That would require an immediate transfer to Children's Hospital for a heart catheterization to open her atrium septum so blood does not fill in her lungs because it has no where to go. It is not a complicated procedure, and will not affect her readiness for her 1st open heart surgery. Still scary though that she could be transferred so soon. We will know more on May 1st at our next appointment. He hopes to confirm one way or the other if she will need the immediate intervention. It's tough to see at times since she doesn't always cooperate on the ultrasound!
I also had a fetal cardio ultrasound and there wasn't much change from 4 weeks ago. We were informed that Kate might not have a bypass from her underdeveloped left side to the right side, so she might need intervention as soon as she is born. That would require an immediate transfer to Children's Hospital for a heart catheterization to open her atrium septum so blood does not fill in her lungs because it has no where to go. It is not a complicated procedure, and will not affect her readiness for her 1st open heart surgery. Still scary though that she could be transferred so soon. We will know more on May 1st at our next appointment. He hopes to confirm one way or the other if she will need the immediate intervention. It's tough to see at times since she doesn't always cooperate on the ultrasound!
Wednesday, April 18, 2012
Letting Go
Whenever you are pregnant and feeling those little (and big) kicks and jabs, you can't wait for the day you get to meet your little baby and hold them. Well when Jacob was born, we didn't get to hold him until the next day due to his full placental abruption birth. That was really tough, but we knew we would be holding him soon enough. It was so wonderful to finally have the moment to "meet" our little guy and I'll never forget it.
So whenever I found out I was pregnant with Kate, I was so excited and hopeful for a positive birth experience this time and getting to hold her right away. Well that won't be the case again, but for a period of time that is unknown. I have no idea if we will get to hold her before her first surgery, or have to wait until afterwards, and how long will the wait be?? This has been so hard for me to accept, but I need to let go of my baby holding fantasies. I know it is what's best for Kate, but it doesn't make it any easier!
There are so many other things that I need to let go of, but being the perfectionist and planner that I am, I am finding it very difficult. I hate that I can't plan anything in our lives past the end of June. I don't like that I can't have everything ready for her when she comes home..we just have no idea what her needs will be. And we don't even know how long she will be in the hospital so it is hard to make Jacob arrangements. I have no control over our lives and it drives me crazy!
Another issue I need to get over is the worry of Kate being developmentally or physically delayed. Yes, her life (and ours) is going to be tough the first few years, but we will do everything possible to help her with any delays she has. It is to be expected for a baby that has 2 open heart surgeries in the first 6 months of life, will probably have more difficulty learning to crawl and walk.
I am going to try my best to let all of this stress go that I've built up because all that really matters at this point is bringing Kate home as healthy as she can be. Isn't our ultimate goal as parents to provide our children with the best opportunity possible to become happy, productive adults?? The path will always be bumpy and at times seem impossible, but I know that Craig and I have what it takes to give Kate and Jacob the tools needed to succeed in life!
One thing I did get to plan...Kate's 1st baby blanket:) I know hospitals can be very chilly, so this will keep her super warm!
So whenever I found out I was pregnant with Kate, I was so excited and hopeful for a positive birth experience this time and getting to hold her right away. Well that won't be the case again, but for a period of time that is unknown. I have no idea if we will get to hold her before her first surgery, or have to wait until afterwards, and how long will the wait be?? This has been so hard for me to accept, but I need to let go of my baby holding fantasies. I know it is what's best for Kate, but it doesn't make it any easier!
There are so many other things that I need to let go of, but being the perfectionist and planner that I am, I am finding it very difficult. I hate that I can't plan anything in our lives past the end of June. I don't like that I can't have everything ready for her when she comes home..we just have no idea what her needs will be. And we don't even know how long she will be in the hospital so it is hard to make Jacob arrangements. I have no control over our lives and it drives me crazy!
Another issue I need to get over is the worry of Kate being developmentally or physically delayed. Yes, her life (and ours) is going to be tough the first few years, but we will do everything possible to help her with any delays she has. It is to be expected for a baby that has 2 open heart surgeries in the first 6 months of life, will probably have more difficulty learning to crawl and walk.
I am going to try my best to let all of this stress go that I've built up because all that really matters at this point is bringing Kate home as healthy as she can be. Isn't our ultimate goal as parents to provide our children with the best opportunity possible to become happy, productive adults?? The path will always be bumpy and at times seem impossible, but I know that Craig and I have what it takes to give Kate and Jacob the tools needed to succeed in life!
One thing I did get to plan...Kate's 1st baby blanket:) I know hospitals can be very chilly, so this will keep her super warm!
Saturday, April 7, 2012
Sisters by Heart
We received this care package from a support group called Sisters by Heart on Wednesday. They are a group of heart moms who came together to provide support to newly diagnosed HLHS babies and their families. They are a wonderful resource at the beginning of our journey with HLHS and have already answered many of our questions about the first few weeks after birth.
The care package had so many helpful items such as: notepad/pen, mom planner, journal, pacifiers, hand sanitizer, moisturizer, blanket, side snap onesie, onesie w/ hat, baby legs and a very small hospital gown. It also had a teddy bear for Jacob, so he didn't feel left out! We love everything and are so grateful for their generosity and knowledge!
The care package had so many helpful items such as: notepad/pen, mom planner, journal, pacifiers, hand sanitizer, moisturizer, blanket, side snap onesie, onesie w/ hat, baby legs and a very small hospital gown. It also had a teddy bear for Jacob, so he didn't feel left out! We love everything and are so grateful for their generosity and knowledge!
Thursday, April 5, 2012
Kate's Diagnosis
March 19, 2012 - probably the worst day in our lives. We went for a Level 2 ultrasound to get a closer look at our baby girl's heart since the last 2 ultrasounds were unsuccessful in seeing a 4 chambered heart. We were told that she had a heart defect called Hypoplastic Left Heart Syndrome. It is a very rare congenital heart defect, and we don't know the cause, but it basically means that she only has 1/2 of a functioning heart. Her left side is very underdeveloped and cannot pump blood to her body. She is fine while she is inside my belly b/c I do all of the work, but once she is born, she will need a series of 3 surgeries to make her heart function as best as it can.
She will never have a normal functioning heart, but with successful completion of the 3 surgeries, we are hopeful that she should be able to lead a mostly normal life. She won't be running any marathons or playing competitive sports, but she should be able to run and play like any other kid. The doctor said that there is 95% survival rate with successful completion of the surgeries.
The 1st surgery will occur within 1 week of birth. I will be delivering via c-section at Mercy Hospital St. Louis probably sometime between 6/18-6/27 depending on her size. She will be having her surgery either at St. Louis Children's or Cardinal Glennon Hospital. We will know more once we meet with the surgeon about 4 weeks. This surgery is the highest risk since she will be so little. The 2nd surgery will occur around 3-6 months after birth. The 3rd surgery will occur around 2-3 years old.
She will never have a normal functioning heart, but with successful completion of the 3 surgeries, we are hopeful that she should be able to lead a mostly normal life. She won't be running any marathons or playing competitive sports, but she should be able to run and play like any other kid. The doctor said that there is 95% survival rate with successful completion of the surgeries.
The 1st surgery will occur within 1 week of birth. I will be delivering via c-section at Mercy Hospital St. Louis probably sometime between 6/18-6/27 depending on her size. She will be having her surgery either at St. Louis Children's or Cardinal Glennon Hospital. We will know more once we meet with the surgeon about 4 weeks. This surgery is the highest risk since she will be so little. The 2nd surgery will occur around 3-6 months after birth. The 3rd surgery will occur around 2-3 years old.
They have made great medical advances in these heart surgeries, so we are very hopeful for a positive outcome. This will be a lifelong challenge for our family, as there can be many complications and the need for additional surgeries.
I will continue to have lots of ultrasounds to watch her heart and her growth. She looks to be perfectly healthy otherwise.
It has been really tough for us, but we want to be as normal as possible for Jacob. Our focus for now is just getting her out as plump and healthy as possible. We've decided to share her name so everyone can pray for her. Her name is Kate Elizabeth:)
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