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