Good news and some bad news

We had the mother of all doctor visits on Thursday! We had FIVE appointments and were at the hospital ALLLLLLLL day long! 

We had another fetal echo cardiogram, a consult with the pediatric cardiologist, a consult with Amelia's surgeon(we also toured the Children's hospital), a non-stress test, and a growth scan. It was a full day, but we feel much better after the visits. 

The consult with the pediatric cardiologist was just to go over the new fetal echo. She told us that while Amelia does still have HLHS, it's not as severe as a typical HLHS heart. It's so nice to hear. After our original appointment, where we found out about her HLHS, I slowly started to feel very weighed down by fear. After this appointment, I am feeling a bit better. The cardiologist(who happens to be David's pediatric cardiologist from when he was a teen) said that she wants Amelia transferred from my hospital that I deliver at, to the Children's hospital ASAP. Usually they transfer around 24-48 hours after birth, but she said she is more aggressive about the transfer. Part of me really wants Amelia to stay longer, so I can see her everyday until I am discharged, but the other part of me knows that it is best for her to be at children's. This is one of  many things that breaks my heart. Amelia will be taken from me, put in NICU right away, and then taken to children's. One of my biggest fears is that she'll be transferred, and the doctors will decide to operate before I am discharged. 

After the consult with the pedi cardiologist, we met with Dr. A(his last name is a mile long) at American Family Children's Hospital. I am so happy that we got to meet him. The nurse on his team reassured us that he is the best for the job. He comes from San Francisco, where he had a ton of experience. Now he doesn't have quite as big a case load as a typical pediatric surgeon, so he spends all day with his patients. He sits next to them for a few hours after their surgeries to make sure everything is okay. He said something that stuck with me. "Amelia chose the most complicated of heart defects, that's the bad news, but the good news is, she chose an easier version of the heart defect." The left ventricle of her heart isn't as small as a typical HLHS heart, and the same for her Aorta. Usually the Aorta is very small/closed. Hers is a decent size and open, giving them some room for work. The national percentage of mortality of kiddos with HLHS in the first year is 15%. That's a little bit of a scary number, but that leaves 85% that survive. The first two surgeries that are done when she is a few days old, and before she is 6 months old, are the most complicated, but after the 2nd surgery, we can breath a little. Her third surgery will be anywhere between 2-5 years old. This whole situation sucks, but there are some good things about this sucky situation. 20 years ago, doctors were giving babies a 20% chance of living. Now, 20 years later, babies are living and the oldest survivors are in their 20's. The doctors are learning more and more about what risks lay ahead as the kids get older and what to look out for. I am so grateful for science and how far it has come. 

We toured the Children's hospital, which was pretty neat. It's a new hospital and they have state of the art equipment. We saw where Amelia will be staying(in the PICU), and it breaks my heart to walk through there and see kiddos hooked up to machines. I cannot imagine what my heart will feel when it's my very own newborn hooked up. 

I had my first of many NST's(non-stress test). All they do is hook up a monitor to me, it monitors Amelia's heart beat. In 20 minutes Amelia's heart beat must rise a certain amount, 2 different times. She was moving the whole 20 minutes, so she passed with flying colors. I will have 2 NST's a week until our sweet girl gets here. Luckily, I don't have to drive all the way to Madison for both. I can do one a week in Reedsburg, which is just 15 minutes from our house. 

The growth scan was funny. Girlfriend is large! She is weighing around 4lbs 8 oz, but what's so funny is how difficult she makes it for the techs to see anything. Every time they wanted to measure something, or listen to a part of her heart with the doppler on the ultrasound, she would start practice breathing. It was like a game to her. She was testing their patience. haha

Like I said, it was a full day. I have so many emotions right now and I am not sure how to express them. I am grateful for the team at both hospitals. I am SO blessed by my husband, who is such an amazing support for me. Emma is also an incredible blessing, because she helps take my mind off of it. My heart is also breaking because I know what's coming. I know I will be spending much less time with Emma once Amelia is here. I am always with Emma, but once Amelia gets here, I will go a few days at a time with out seeing her. I cannot even...it's very hard to think about. I am scared for Amelia. Through all this, I am praying for strength. I don't know how I will get through this next year, but I know I will, because God is good and I trust Him. I cannot wait until 10 years have passed and I can look back at all of this and see how far we've come. Shoot, I cannot wait to look back on this in a year and see how far we've come. 

ALSO, we're closing on our house on Halloween. YAAAY! We're so excited, but that means we have a lot going on right now. A lot of transitions for Emma!

Things to pray for:

-Amelia's sweet heart, that it would by some miracle, improve!

-Emma. This is a lot for her, also. 

-David and I. 

-Strength

-The moving process!!

Thank you for reading my always long updates!

Love you all, 

Kelly

Our care package

I posted a picture of a hospital gown that we got for Amelia and mentioned that we got a care package. I wanted to go into detail about the organization that sent it to us and show you everything we got. 

The organization that sent the package is called SistersbyHeart(http://www.sisters-by-heart.org/). Basically they send care packages to families who have recently learned that their baby has HLHS. The women who run the organization have had babies with HLHS and graciously decided to help other families out. They fill the package with things that were helpful to them during the hospital stay. They have been encouraging to me. 

 This is our package:

The hospital gown is made by EZ Axcess (http://ezaxcess.com/)

When I first opened this, it broke my heart. This is real, she is going to need surgery. It's not only cute, but very functional. 

These are socks made by http://www.socks4surgery.com/#. They says "I'm here for the Norwood" The norwood with the name of the first surgery that she'll undergo. They're so tiny and cute.

Babylegs, because Lord knows it's not going to be fun having to take off pants to change a diaper.

A tiny hate that was made especially for Amelia. It snaps open to accommodate an IV on her head. 

A journal to write out my feelings through everything.

A side snap onesie. A lot of the time she will be in just a diaper, but there will be times when I can put clothes on her. When I am able to do that, putting anything over her head will be too difficult because of IV's, so this side snap onesie will come in handy. 

A deck of cards for dad! (: This is to help pass time during the surgery. 

A heart ring for mom (: 

Amelia most likely won't be able to eat for a while after birth so her sucking reflex may need some work. So they sent a paci to help out with that. 

A sign to hang from the car seat. I know I always thought it was silly to see these, but now that I will have a baby who cannot afford to get sick in any way, this will be hanging form her car seat. I am also not afraid to smack the hands of an older woman who ignores the sign. (: 

Hand Sanitizer and moisturizer. We'll obviously be washing our hands and sanitizing them like crazy people in effort to keep Amelia safe and healthy. The moisturizer is so that our hands don't age 10 years in the process. (: 

This was a sweet little extra! I don't think she'll be able to use these in the hospital, but once we get home, we'll use them! I was so excited to see these! They're so pretty and exactly the ones we were going to buy!!

This is the giant bag that it all came in. We'll be carrying all of the goodies in here. 

We're so grateful for the care package. It gives us an idea of some things that we can stock up on before she gets here. 

Thank you for your prayers. This Thursday we have an appt in Madison. We'll be doing one more echo on her heart, a growth scan, a non-stress test, meeting with the pediatric cardiologist, meeting her surgeon, and touring the children's hospital that she'll be staying in. It's a big day and we're hoping to walk out there with every question answered and to feel more comfortable with everything. So far we have been very impressed with Meriter, the hospital that I will be delivering at. They have taken such good care of us. They try their best to make sure we walk away knowing everything we need to know. I feel very confident in the team who will be taking care of Amelia and I. For that, I am incredibly thankful! After this appointment, I will have a few appointments every Tuesday in Madison. Then starting on the first of November, I will have an appointment every Friday for a non-stress test. That's two appointments a week, one being 2 hours away! 

We're also closing on our house on Halloween day! This is so exciting!!! We have been patiently awaiting for this day, so now that we have a date, we're beyond excited! With this brings lots of stuff to do. Please pray for patience and for everything to go smoothly. We have to get a few things ready before we can move in. I am not looking forward to moving while being 33 weeks pregnant, but we have a lot of help! 

I just want to stress how blessed we are, we have a lot going on, but God has given us such a peace about everything. We have such amazing people in our lives that are here to help us along the way. Not to mention, Emma. Girlfriend is keeping us busy. She takes my mind off of everything and makes me SO happy. I don't think I could do this without her. 

Love, Kelly.

Here we are.

I want to document this journey we're about to take off on. I want to look back in a couple years and be so happy at where we are, and see how far we've come. I have faith in God, that we're going to get through this much stronger than we started. And for that, I am excited. 

On Thursday the 26th of September, we had what we thought would be our last ultrasound for this pregnancy. It was a follow-up anatomy scan. During every pregnancy, doctors like to see how the baby is developing around the half way mark, so they schedule what's called an anatomy scan. The doctor looks at the brain, heart, and everything else. We had an ultrasound around 17 weeks, which is 3 weeks earlier than the normal anatomy scan. My midwife thought the baby was measuring large, so she wanted to make sure that there was only one baby in there. HA! David and I thought for sure we were going to be having twins! Sure enough, only one healthy, normal sized baby. We got to see the baby's heart. All four chambers were looking nice, the tech said how great it was that we could see them all so clearly. Good news! Who doesn't love growing a healthy baby?! At 28 weeks my midwife wanted one more ultrasound since 17 weeks was a little early for the first scan. No big deal, we love seeing our girl! The tech we had was....okay. She mentioned multiple times that she was having a hard time getting measurements, and complained about the babies size multiple times. "Baby is too big to be doing a scan this late." Oh well, we enjoyed the ultrasound anyways! On Monday the 30th of September we got a call from my midwife saying that she saw the ultrasound pictures and was concerned about the size of something in her heart. She assured me that it could be nothing and that it could have just been their machines not getting a good enough picture. Even though she told me not to worry, I immediately start crying. It's not fair, I just want to enjoy this pregnancy and not be nervous about something. I spent the first half worrying about losing the baby, since I had a miscarriage just a few months prior to getting pregnant, and now I will have to worry about my babies heart. We scheduled a fetal echo cardiogram to see what was really going on. A large part of me thought we were going to see a healthy heart because I didn't have full confidence in the ultrasound tech that kept complaining about the baby being "too big to do this scan". 

On October 3rd we drove 2 hours to Madison, so that we could be seen by specialists and have the echo performed. We had another regular ultrasound, which was much more pleasant than the last one. The tech did a great job at finding everything. After that, we were told that there was, in fact, something wrong with her heart, but we would know more once we have the echo. David and I needed some air and some food. So we distracted ourselves by walking around and grabbing a bite to eat. Then we went back for the scariest test I have ever taken. It was a 30 minute ultrasound looking only at her heart. The pediatric cardiologist was very quick and made sure she got a look at everything. She made a few comments about the baby practicing her breathing and how good that was! Then we went into a consult room and she started to draw out a picture of a normal heart and how it functioned, and then drew a picture of our baby's heart. She said a lot more things that started to all run together, and then I heard Hypoplastic Left Heart Syndrome. Then she started talking about surgery on my newborn. I started to sob, hearing that my precious newborn would have to have surgery. I never, in a million years, would have thought that there could have been something so wrong with her heart. 

If you don't know what Hypoplastic Left Heart Syndrome(HLHS) is, here is a link to describe it to you. http://www.childrenshospital.org/health-topics/conditions/hypoplastic-left-heart-syndrome-hlhs.

We had several more hours of explanations and planning. 

As of now, baby girl will be delivered via c-section at Meriter hospital in Madison. 24-48 hours after her birth, she will be transported to a children's hospital just down the road. Between 5 -14 days after her birth, she will undergo surgery on her heart. If everything goes well, she may come home with us sometime around her one month birthday. She will need 2 more surgeries before she turns 5. 

A lot of my sadness had been incredibly selfish. I won't get to bond with her, I won't get to breastfeed her, I won't get to bring her home and enjoy the newborn stage, I will have to hand my baby over to have surgery. I know this is selfish, but I cannot help but be so broken over these things. What makes me most sad is knowing the pain she'll feel and I won't be able to comfort her. It breaks my heart SO much. I have 2 more months of having her to myself, I don't have to hand her over, and I don't have to see her in pain. I am choosing to put my sadness away for a while and enjoy the rest of the time I have with her to myself. 

Since the diagnosis, I have been praying for strength and peace. God is so good. I feel stronger than I ever have, and I know it's out of my hands. I am so blessed to be surrounded by so much support. David is incredible and his family is right here by our side's, ready to help. 

It's going to be a rough road, and there will be hard times, but I know my God is here to hold me.

We finally picked a name for our sweet girl. 

Amelia Faith Miller. 

Amelia means to strive or excel. We named her for success. We have FAITH in our girl and most importantly in the Lord. 

Love, Kelly.