Here We Go

Tomorrow is the day that we will potentially be "moving" to Denver. I called the Ronald McDonald House this morning and they told me that they have many rooms available, but due to a stomach flu epidemic at Children's Hospital they are not taking any new residents. They hope that restriction will be lifted tomorrow. While that doesn't sound like the best scenario for us to be walking into, it may actually work in our favor because of there are empty rooms waiting to be filled. I have a fetal monitoring in the morning at McKee and if they are allowing new residents tomorrow and we get a room, we'll head down in the afternoon. It's crazy seeing all of our things packed and getting put in the car. I'm really conflicted about going down to Denver a week early. I want to be there because I'm very scared about going into labor early and it wouldn't be good if I went into labor in Loveland. At the same time, I want to stay home as long as we can. But we can't pass up a room if one is available for us because we will need that room for quite some time. A week from tomorrow, Mia will definitely be in our lives and everything will be forever changed. It's a surreal feeling.

Quickly Approaching

A week from now we will be loading up our car and heading to Denver in anticipation of my delivery. Two weeks from now, my Mia will be here. Everything is happening very quickly now and I'm getting both excited and nervous. I'm so excited to meet my baby girl and see what she looks like. I'm excited to see Izzy's reaction to her baby sister and to see Art hold our daughters together. I'm excited to hopefully be able to hold her myself and feel her little hand in mine. While all of that is in the front of my brain and those are the things I'm trying to focus on, I can't help but think about how different things are going to be this time around. Although I had a c-section with Izzy, I'm nervous about my own surgery. I'm nervous about how long it's going to take for me to recover. I'm nervous about how Mia's heart will look once she is out in the world and, of course, nervous about her first surgery. I'm nervous about how Izzy is going to react to everything that will be going on and about living in an unknown place for more than a month. Everything will be foreign to us. Deep down I am a true believer that everything happens for a reason. I'm still not sure of the reason for all of this. One day I'll know, but for now it's hard. Every part of it is hard. I want the best life possible for my family and I just hope we're doing the right thing. I feel Mia kick inside of me and I wonder what kind of life she'll have down the road. I wonder what kind of life we'll all have. Then I look at my Izzy and hope that we also made the right choice for her. Being a mother is definitely the hardest job there is, no one will ever be able to convince me otherwise.

Appointment Update

So we spent the past two days in Denver going to three different doctor's appointments. Yesterday we were at Children's Hospital and saw our wonderful and amazing cardiologist, Dr. Karrie. She did another echo on Mia's heart and everything looks good. Nothing has changed, which is a very good thing. Dr. Karrie commented on what a nice blood flow Mia and I have between one another and let us know that the PDA (Patent Ductus Arteriosis) is still nice and open. This is very important because if at any time that hole starts to close, the first surgery may not be an option and Mia will have to be delivered early. We need her to grow as large as possible, especially her lungs. We also found out that right now she's breech. My babies must just like living in me up-side-down!

After that appointment we met the surgeon that will be doing all three of Mia's surgeries, Dr. Jaggers. We liked him a lot. He let us know that with the way things are looking right now he plans on doing the first surgery, the Norwood, 3-5 days after Mia is born. This is earlier than we expected, but that's good. He said that as far as HLHS patients go, her heart looks very straight forward and he isn't anticipating any complications. That was very good to hear. We did find out that the earliest recovery time after the first surgery is anywhere from 3-4 weeks. So from the time that I deliver, we're looking at being at Children's 4-5 weeks total, a little longer than we had originally thought. That is, of course, assuming that nothing else goes wrong.

Then today we were at University Hospital and met Dr. Schwartz, the doctor that will be doing my c-section. He wasn't able to give us a definite answer on where I will deliver. A whole team of doctors and nurses are going to meet on August 31st and they will discuss my case. That is when the decision will be made as to where I will deliver. This is primarily because of the stroke that I had. We want to make sure that I get the best care possible as well, which may actually end up being at University where they are better equipped for adult patients. We did find out that if I have to deliver at University (right next to Children's), that Mia should be able to stay in the NICU there until I'm discharged. It was a huge relief to hear that. I was having a very difficult time thinking about trying to recover after a c-section and having my baby girl in a different hospital than me. Right now we're also unsure as to when they will schedule my c-section. It should be anywhere from 37-39 weeks in the pregnancy (early-mid October). We plan on staying in Denver for about a week before the scheduled c-section date in case I go into labor early.

It was a long few days and we're all really tired. Although there are still a lot of unanswered questions in regard to the delivery, we are so grateful to have met all the doctors that will be involved in the process. We're very happy with how the appointments went and will be greatly anticipating going back in a month!

Emotional

I'm having a very rough day today and it's only 7:30 AM. I woke up this morning and all I could think about was the fact that in a little over 2 months I will be delivering our baby. Then a short time later, she'll be taken from me into the Intensive Care Unit. I'm so saddened and distraught over the fact that a living being I've been growing inside of me for 9 months will not be directly in my care after she's born. I was also thinking about how I won't get the opportunity to nurse her. Nursing my Izzy was challenging, but it was an amazing bonding time that we shared. It was something for just the two of us. Sure I can still pump and help to keep Mia as healthy as possible with my milk, but it won't be the same. None of it will. We are trying to be as prepared as possible for all of this logistically, but I'm having such a hard time preparing myself emotionally.

Our Decision

Here are a few ultrasound pictures of our little Mia. The top one is a 4-D ultrasound of her cute little face. That picture was actually taken about 3 weeks ago. The second is a regular ultrasound of her profile, she's sucking her thumb.

Last week we got the opportunity to visit the Denver Children's Hospital and have made our decision in regard to Mia and the actions we're going to take. All of our amniocentesis results were normal...huge relief. So we will be going ahead with the pregnancy and having the three open heart surgeries performed. We will be having those done at Children's Hospital. We were pleasantly surprised to find out that I will also be able to deliver right at Children's Hospital. Since I had a c-section with Izzy, I will be having a planned c-section again. We can only pray that I don't go into labor early. Upon delivering the baby, she will be able to stay with us for probably about 6 hours and then they will take her to the NICU. Hopefully I will be able to get up and around quickly so that I can go to the NICU and be a part of the first few days while I'm recuperating. The first surgery (the Norwood) will happen anywhere between her first 4-10 days of life. It will depend largely on how her lungs are developed. They will keep our Mia alive by giving her a medicine to keep a valve open, one that is right now connected to me through the umbilical cord. Once a baby is born, that valve usually closes within a few days. The medicine that they will give her will keep her valve open and will keep her alive. This valve will keep her heart pumping blood and oxygen throughout her body until the surgery is done. The first surgery is the most crucial and holds the highest risks. If all goes well with the delivery and the surgery, we should be able to take Mia home in about a month.

We will be "moving" to Denver during this time to the Ronald McDonald House. The one we will be staying in is only about 5 minutes from the hospital. It's so hard for me to imagine how our lives are going to change during that time, but it seems more tolerable now that we have the initial planning started. We are going to go back to Denver on August 18th for an appointment with the doctor that will do my c-section and to meet the surgeons at Children's. I have to admit that I have my good days and my bad days. Some days it seems like nothing is different and we just keep chugging along. Other days I can't stop thinking about the possibility of something awful happening. But on those days, I look at my wonderful husband and my precious daughter and I realize that I have so much in my life. And Mia will be just one more special, priceless thing to add to everything I already have.

Returning to Blog

It has been a very long time since I have written on my blog. I guess with all that is going on, what better time to start back up. In February we received the wonderful news that we are expecting our second child. After two miscarriages we were both very nervous about the pregnancy. We opted not to tell anyone until I entered the second trimester. Once we were to that point, we were beyond thrilled. Ultrasound confirmed a growing baby and a beating heart. My pregnancy has been very normal and easy, with the exception of extreme tiredness. At the beginning of June we went in for our first ultrasound hoping to hear nothing but good news and find out if we were having a girl or a boy. The ultrasound tech was unable to see our stubborn baby's little parts and said that there was a shadow over the heart and we would have to come back. The next week we went back in. We got the exciting news that we are having a girl! But still, not good heart pictures. We went back again two weeks later. The ultrasound tech thought that the heart looked good and that we were good to go. The next day my doctor called to let us know that he had looked over the pictures and he still didn't think it was the best picture possible of the heart. So he was referring us to a perionatologist (high risk doctor) in Denver. The next day we went to see her and our lives changed. She was able to get better ultrasound pictures, but those pictures came along with bad news. She wasn't entirely sure of the problem at hand so we walked away with the possibility of two different heart defects and a completed amniocentesis. We will get the results of the amniocentesis on Tuesday. On Friday we were referred to a Pediatric Cardiologist in Lone Tree. We went there and they did an eco-cardiogram ultrasound on Mia's heart. That doctor has confirmed that Mia has a serious congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Basically what this means is that the left side of her heart is extremely underdeveloped and will never develop. The only thing keeping her alive right now is the fact that my body is providing her with the oxygen and blood that she needs. In order to fix this problem, a surgeon will have to do three rounds of open heart surgery. One when she is less than a week old, one at 3-4 months of age and one at 3-4 years of age. The surgery would essentially create a bypass around the left side of her heart so that her right side will do all the work and she would live with a two chamber heart. We did find out that the chance of her also having Down Syndrome is extremely low with this condition, but we will know that for sure on Tuesday. We do know that I should be able to carry her full term and that I will have to deliver her in Denver. Art and I have a very difficult decision to make at this time, the hardest of our lives. Please keep our family in your prayers, we are in need of lots of support right now. You read about these things happening to people, but never think it will happen to you. Today we will be awaiting the test results of the amniocentesis. The results of that test will more than likely be the deciding factor in our decision of what to do. I have gone through one time in my life that has been as hard as this, but the difference is that then it all involved my well-being. This involves the well-being of our unborn child. They tell you that being a parent is hard work, well, I never imagined it would be this hard.