Ups and downs

Amelia is still doing really well, but my lack of patience is starting to get to me. 

You know, she is doing well, handling the surgery, and meds, well, and now I want to go home!!

It's not that easy.

 Now, she has to start gaining weight and eating orally. She has never been fed orally in her entire(almost)3 weeks of life. It wasn't until recently that she started being fed through an NG tube in her nose. We have to have a speech therapist come and evaluate her sucking and swallowing to make sure it's safe for her to eat orally. 

Thursday, Friday, and Saturday, Amelia was in a lot of pain and the doctors couldn't figure out what it was. I believe it was gas. Girlfriend would scream, scream, scream, and then poop or fart, and then she would be fine for a while. She pooped like 10 times in one day. The speech therapist was going to see her Thursday, but she had, had a lot going on since they took out her chest tubes and oxygen. She ended up needing to go back on oxygen for another day. So she came back on Friday, and poor baby was still so irritable and didn't even want the paci. So now it's the weekend and she isn't here to evaluate her. Amelia is feeling much better now, so hopefully when speech comes back tomorrow, she'll be all ready for eating. Once she starts eating(If she does), she will need to gain weight really well before we can go home. If she doesn't eat well, they'll have to do another surgery to put in a G tube. It'll go straight into her belly and she'll be tube fed whatever she cannot eat orally.

She only has one IV left, and it's not even giving her medicine. They have it just in case they need it. She gets all medicine through her feeding tube, now. So much has changed so quickly and I am grateful that she is doing so well. The last couple days I have been incredibly frustrated. I feel like we're on the home stretch, but at the same time, it feels like we'll never leave the hospital. I know it's God working on my patience. There is a family down the hall from us who have been here for almost 9 weeks. I have to remember that we're alright and we *shouldn't* be here that long, since Amelia didn't have the complications that, that little girl had. 

I live for the day that we put her in the car seat and carry her out of the hospital. 

Things to pray for:

Emma is going back with her grandparents today. She is going to have a lot of fun, but I am going to miss her, of course. 

David is going back to work on the 2nd, so that means I will be alone in Madison during the week. I will survive, it will just be difficult being without Emma AND David. 

Amelia should see the speech therapist tomorrow, and while I know these things don't happen over night, I would just love for her to rock the eval, so we can start oral feedings. 

THEN, if we start oral feedings, she needs to be able to gain weight really well. 

Thanks, y'all for your continued prayers and support. It means a lot to David and I. I cannot wait to tell Amelia, one day, how so many people were praying for her, and how everyone was so supportive and loving towards us. 

Love, 

Kelly

Feeding tube

They just placed an NG tube in Amelia's nose for a second time(the first one got pulled out accidentally while pulling out the breathing tube.) so they plan on giving her very small amounts of breast milk through out the day. The hope is that her tummy will do well with it and we'll be able to increase the amount. Eventually, we will have a consult with a speech therapist who will evaluate her sucking reflex. They want to make sure she is taking the appropriate amount of breaths while sucking. Luckily she has taken to the paci again, since her surgery, so hopefully she'll be able to pass that test and will get a bottle/start nursing sometime soon. 

Please be praying for Amelia's pain. Poor girl still has chest tubes in and they're causing all kinds of pain for her. She had hiccups last night and it was incredibly painful. She had to have morphine to help. It's very pitiful to hear her cry because she barely has a voice because of the breathing tube. You can barely hear her. Poor sweet girl. 

Thank you, everyone, for your prayers.

Love, 

Kelly

Strong girl

Amelia's surgeon said that he wishes all his patients were like her. This makes my heart so happy, because if Amelia was having troubles, I don't think my heart could take it. I am already an emotional mess from seeing her this way, I cannot imagine if she were struggling. I know it's still early in all of this and she could still have complications, but right now she is doing so well.

 (He also said "She is actually cute, a lot of the babies aren't that cute, but she is...and I wouldn't say it if I didn't mean it!")

Her chest was finally closed after 4 days. Her surgeon(Dr. A) wanted to make sure all of her swelling went down before closing her. When he closed her up, he said everything went "beautifully". I guess babies are usually a little unstable after the closing, so he has to stick around for a while, but Miss Amelia did just fine. All of her swelling has come down, so now she looks like my baby again. Right now she has 3 chest tubes, pacer wires, and 4 IV's. They just took out her breathing tube. They waited around to make sure that they weren't going to have to put one back in. She started breathing just fine on her own. A huge prayer point would be to pray that I calm the heck down. haha I want everything to happen so fast now. Poor Amelia just had open heart surgery less than a week ago and I am wanting everything to just happen, like yesterday. hah Now that she has had the surgery, and is doing so well, I want everything to just happen. I am so anxious to get to snuggle her, but don't feel comfortable holding her until her chest tubes are out. Those are the worst things to look at. She should get those out within the next couple days. Today they should be trying to give her breast milk. I hope she likes it, I have been pumping around the clock to build up my stash and to help my supply. First, they'll try to feed it to her in a feeding tube through her nose. The hope is that she'll pick up her sucking reflex right where she left off with it. She did a great job at sucking the paci right away, so hopefully she can pick it back up and have no problems eating with a bottle, or nursing. 

It hit me yesterday that we'll have to go through this all over again in a few months. Tears, everywhere. I hate that she is going through this now, but I am sick over having to bring her back to go through it again. 

Right now we have Emma with us, which is so nice. We love having our bug with us. We missed her so much! We'll get to spend Christmas with her! 

Thank you, everyone for your continued prayers. We appreciate it so much! 

We serve a big God! Amelia is such a miracle and we're so grateful to God, for her. 

Love y'all, 

Kelly

Surgery day

My sweet baby was wide awake this morning, looking around, taking in everything, melting our hearts, when the anesthesiologist came in and checked her over, then some nurses, and some doctors, and finally her surgeon who told us to give her kisses and hugs because it was time.

To say that, that was the single most difficult thing I have ever experienced in life, is an understatement. Going into all of this, I knew it would be hard. I knew it would suck, but when you get to the point of having to let go of that tiny little hand and let them take her into the operating room....nothing can prepare you for that. Nothing. We were told that we would get many update through out the day, but that we needed to just rest and go do something. So David and I went back to the Ronald McDonald House and slept. We're both exhausted, more so David, so we needed the rest. We woke up to a call, telling us that they had opened her up an hour prior and that she was on bypass. She was of course doing really well. The rest of the day, we spent with Emma. My mother in law brought her down the night before, so it was nice to spend a whole day with her and take our minds off of what was happening. Emma and I took another nap later on and just snuggled.

We got the call that surgery was done, but it would be a long time before she was back in the room, because her surgeon sits with her just in case anything goes wrong. She had some extra bleeding, but they were on top of it and took care of it.

We hung out with Emma a little longer and then said our goodbyes. This is one of the worst parts of this whole thing. I am missing my Emma everyday. She is doing so well with her Nana and Papa and is so happy, but I am so sick over all the time away from her. I am so grateful for all the support we have for Emma. It's an incredible blessing.

When we got to the hospital, it wasn't long before we talked to nurses, who told us what to expect when we see her. They didn't want it to be a huge shock. They described everything we would see and what it all means. This was a huge help. I was so nervous, as we waited for them to call us back into her room to see her. The moment I walked into the room, I got ill. My head hurt, my body ached, and I felt like I was going to throw up. She has a lot of iv's, tubes, and wires. She is going to be sleeping for the next couple days because her chest is still open. They left her chest open because after a surgery like this, things swell, and it's just much safer for her to have room to swell a little. There is a latex looking tape that is covering her heart, but you can see her heart beating underneath. So since her chest is open, they don't want her to get worked up at all, so they're keeping her asleep. I am so anxious for the day that they let her wake up, but we have to be patient. This is a long process with a long road ahead of us.

Things to pray for:

It was made clear by one of the nurses that it's not a question as to IF she will have little hiccups in her road to recovery, but more so a question of WHEN and HOW MANY. We're praying for her to shock the medical team! We want her to be the baby that everyone remembers because she had no issues.

This is hard, really hard. I am having a difficult time coping with all of this. To be honest, I am not as strong as I want to be. David and I are always praying for strength.

We're thanking God for the fact that Amelia is doing so well up to this point.

Emma is doing well, so far, so we're praying that it continues this way. We're so grateful that Emma is young while all this is happening. Right now, I think she thinks, she is on vacation with Nana and Papa. Obviously they're more fun than mommy. (;

I debated writing this blog today or waiting until things weren't so emotional, but I figured it would be better to write it while the emotions are all still very new. It's therapeutic to me, to write it out, and it will be nice to read back on this when we're out of the storm.

Thank you everyone for your prayers. I am overwhelmed by all the support, physically, emotionally, and spiritually. Between our awesome insurance, the Ronald McDonald House, the wonderful medical team, all the family/friend support, and everyone who is praying for us, we're so full with love. Thank you, thank you, thank you!

Love, Kelly

Oh, and because, who doesn't love pictures of adorable babies....

She's here!!

Oh my word! What a whirlwind of emotions, the last couple days. This is going to be a long update, so sit back and relax.

Tuesday morning we said our goodbye's to Emma. I had an appointment in Madison and was going to be staying the night. I cried all morning. My sweet Emma is so innocent and had no clue what was coming. Saying bye was brutal, David and I cried as we prayed over her. We prayed/are still praying for peace and understanding for her.

We checked in at the Ronald McDonald House and had one last date night. (:

December 11, 2013-

We arrived at the hospital bright and early, ready to have a baby. I am usually not a breakfast eater, but of course the one morning that I am not allowed to eat, I was starving. I was all ready to go, and was walking down the hall for the operating room when a doctor walked by and informed us that we were bumped. Oh well, no big deal. FINALLY I was taken back at 12:45, 3 hours later than I was supposed to be. Everything happened so fast from that point. Before I knew it, they were pulling her out. I heard that cry and immediately turned into a blubbering mess. Her cry was perfect. David went with Amelia and her team then came back with her so I could see her. I was able to give her some much needed kisses, I told her how much I love her, and told her to be strong. They took her up to the NICU and David followed. Finally he came back and told me that she only weighed 8 pounds and was 20.5 in. So tiny compared to Emma!

My recovery was AWFUL! It took 6 hours to get my pain under control, but once it was under control, I felt great. Amelia was transferred that night, but first made a pit stop by my room so I could see her. 

The next day there was some confusion on when I would be leaving, but I finally broke free and was transferred to UW. I finally got to hold my sweet girl for the first time. Tears, everywhere! 

Words cannot express how much I love this little girl. My heart both jumps for joy and breaks every time I see her. 

She has been doing really well, so far. There have been a couple things that she has done that shows signs of her heart condition. There are so many doctors and nurses keeping a close eye on her because a slight change can turn into a big problem really quickly. 

Her surgery is scheduled for Tuesday. On Monday, though, her surgeon wants to perform another echo to see if anything has changed. Her initial echo showed a decent sized left ventricle, but when they put the measurements into 4 different programs, they all say that she needs to go forward with the Norwood (first out of three surgeries for HLHS)surgery. He wants to get another echo to make sure that left ventricle doesn't grow. If it does grow, there is a possibility for a repair of that ventricle. The typical HLHS surgeries are to build up the right ventricle, so that it's the only working ventricle, but very strong. We would love for her left ventricle to grow. It's a very small chance, but God is big and can do anything, so we're praying for this miracle. If it doesn't happen, we'll be going forward with the Norwood on Tuesday. 

God is encouraging us so much. In the very same PICU, there are 2 other babies who have the same condition. One has had the second surgery and is 4 months old. It was so good to see him because he looks so normal and happy. He had surgery last Tuesday and is already kicking around and smiling like a typical 4 month old. We also met a 6 week old who is a couple weeks out from her Norwood. Her parents are so strong and optimistic. They gave us a care package the day we got there. 

We need your prayers. We're praying for a miracle in the left ventricle. 

It's also very hard, being away from Emma. We saw her a couple times, but it's not enough. I miss her so much. She is doing really well with her nana. I don't think she is having a hard time at all, it's me who is struggling. Prayers for peace while we are separated would  be wonderful. 

This is a mushy little tid bit, so feel free to skip over. I have never loved David so much. When we had Emma, I saw his love for her, and it made me fall in love with him all over again. Having Amelia has done that again. He is so incredibly strong. He has been there for me and for Amelia, and I am so grateful for him. Without him, I would be so lost. 

Sorry if this blog is all over the place and sometimes doesn't make sense. My mind is all over. I am so tired and cannot think properly. (:

Thanks everyone

Love y'all,

Kelly

One last peek and some nerves

On Thursday we had one last ultrasound. It was an echo cardiogram. Just as I suspected, we weren't able to see anything. Her ribs are nice and strong so they cover up her heart pretty good. Her pediatric cardiologist just wanted to make sure her heart function was still good at this point. It is! That's no surprise to me!

We go in on Wednesday morning to have Amelia via c-section. We're so excited to meet her and see how strong she is. We have all the faith in the world that she is going to be fine, it's just going to be a rough first year. Right now, we're more so worried about the effect it will have on Emma. 

Any prayers you could spare for us would be greatly appreciated. I am a ball of nerves. Part of me is so excited to get this baby out of me and the other part just wants to sit with my arms crossed and refuse to go in. 

Love you all, 

Kelly

Her heart

I forgot to add the picture that we got of her heart. The tech said that she didn't think she was supposed to get us a picture of it, but did it anyways. I am grateful for people who do things like this. 
In the picture, I pointed out the small ventricle. Around the ventricle, you can see a thick white layer around it. The pediatric cardiologist and surgeon are unsure exactly what that is and if it's going to cause any problems. I see her heart all the time, in the weekly ultrasounds that I have, but it's nice to be able to really look at it.
This is the her heart. 
Although half of it is too small, it's still beautiful. This little heart is still working like crazy. We have NTS's (non-stress tests) twice a week. They put a monitor on my belly that tracks her heart rate. In a 20 minute time period, her heart rate needs to go up a certain amount at least 2 times. From the second they hook her up, her heart rate is constantly going up and down. Which is wonderful. The nurses and doctors are always impressed and say that they wouldn't know that there was something wrong with her heart by listening to her. Our sweet girl is already living up to her name. Striving and excelling. 

Please keep praying for a miracle. God is so good!


Love,
Kelly

Big lazy baby!

A typical morning starts around 4:30. I wake up on the dot, like clockwork. Gotta run to the bathroom!! The real problem, though, is the second I move, Amelia starts moving. So I usually try and put it off a little longer, to enjoy the bed without someone kicking my ribs. That only lasts about 30 seconds, because I get pretty close to bursting. 

Sunday morning, 4:30 rolls around and I get out of bed and run(wobble) to the bathroom, get back in bed, and snuggle in. When I finally get out of bed around 7, I think "Amelia hasn't moved today" I didn't think about it too much more since it was still early and, somehow, even though I was up early, I still ended up rushing to get ready for church. Rush, rush, rush, and we're at church, worshiping. When we sit down I remembered that I hadn't felt Amelia move yet. This is a big deal, because girlfriend doesn't just slightly move, she throws it down. Kicking, rolling, doing the worm, all that stuff. I drank some cold water, sat back down, poked her, shook her, and felt very slight movements. Not typical of Amelia AT ALL.  Usually I am pretty laid back about pregnancy, but this kid is turning me into a worry wart. After church I ate lunch, drank some juice, and laid down. Nothing. I called labor and delivery at the Reedsburg hospital to tell them I was coming in. I didn't ask what their thoughts were on it, I told them I was coming. Right before I left for the hospital, I felt a couple of decent kicks, but not enough to calm my mind. Something could be wrong. This isn't a "wait and see" kind of baby. We get to the hospital and, I am not kidding you, I second the contraction monitor was put on my belly, she was non-stop moving. It's embarrassing. The nurse laughed it off, because she sees this stuff all the time. Of course my blood pressure was high, though! haha Lord, this kid!  She has been moving like her normal self ever since. Apparently she wasn't getting enough attention that day...because 2 appointments a week isn't enough for her, let's throw in a scary ER visit as well. Whatever, Amelia. Once she is here, and all healed after surgery, she is GROUNDED!

On to a less dramatic topic. Last week we had the usual NST (Non-stress test), she always passes those with flying colors within the first couple minutes. After that, we had a growth ultrasound. They're looking to make sure the rest of her body is growing on track. Heart defects, a lot of the time, can be caused by genetic abnormalities. You can usually see that by a delay in other body parts. Amelia is growing....quite well. Everything looks normal except for her little heart. Oh and at 36 weeks, she was measuring about 6 pounds 15 oz.   No big deal, just a giant baby. Honestly, I am so happy that she is growing to be so big because it sets her ahead. She won't be able to eat when she is born, so having the extra weight will help her out in the long run. ALSO, chubby newborns are just plain cute. 

We did find out, though, that she will be transferred from my hospital, Meriter, to American Family Children's Hospital within 6-12 hours after birth instead of 48 hours. Every week the doctors have a conference about current and upcoming patients at their hospital and at every conference they have said that they would much prefer having her at Children's right away. Much safer to transfer a baby who isn't is distress, than rushing a baby who is. While I understand that this is obviously for the best, it still hurts my heart to know that she won't even be in the same building as me after a few hours. I mean, she spent the last 9 months INSIDE of me and then a few hours later, we won't even be on the same block!  We have a wonderful nurse who has been taking very good care of us this whole time, who is trying to work it out for me, to move to UW, the hospital that Children's is connected to. This would mean that she would only be away from me for one night at most. I *think* I can handle that. 

David and I are getting everything ready for the big day! We're settled into our house and now trying to organize everything before the storm hits. We could use your prayers right now, as we prepare everything. 

Things to be praying for:

~Emma. She is going to be so confused through all of this. She handles everything so well, so we're praying that she handles all of this really well, but are completely understanding if she has a hard time. Can you imagine, everything she has ever known is going to change. 

~Me. I hurt.all.the.time.  I just want to enjoy the last 2 weeks as much as possible.

~Amelia!! There is still hope for a miracle. God is so good and can do ANYTHING! Please pray for a miracle!  

Thank you everyone, for your support. We love and appreciate all of you, so much! 

Love, 

Kelly

Only 4 weeks to go!

Yesterday marked 35 weeks in my pregnancy. Holy cow, everything hurts! I would love to not wake up in a ton of pain, but I wouldn't give up these last 4 weeks for anything!  

Oh yeah, 4 weeks. We have a scheduled c-section on December 11, 2013 at 9:45am!! I have mixed emotions about a repeat c-section. This means that I will never get to have babies any other way. On the other hand, everything is all planned out and I don't have to wonder when she'll be here. We're blessed enough to stay at the Ronald McDonald House in Madison. This means that I won't have to go home after my appointment the day before and then wake up crazy early the next day and make the drive all over again! 

We met with the social worker at Meriter who handles things like the Ronald McDonald House, and she put us on the wait list. If there isn't room there, they put you in a hotel room. It's really nice. There are enough volunteers making meals, that there's 3 meals a day, everyday. How awesome! This is going to make the stay in Madison a million times easier, and cheaper for us! 

Please keep us in your prayers in these next FOUR weeks as we continue to prepare for her arrival. We have things we need to get, but mostly it's the emotional aspect of it all. I don't think I will ever be ready for this crazy train to get moving, but ready or not, she has to come!!

Thanks, Y'all!

Kelly

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.