Happy Halloween!

We had a great Halloween! Zoey loved her costume and was constantly saying, "baa." We went to our ward's trunk or treat Saturday morning. She caught on to it pretty quickly and loved going to each car and picking out candy. I made her costume and am pretty proud of it since it is the first project with a pattern I have ever finished without my mom or a home economics teacher's help!

She had a cardiology appointment on Friday, October 26th. It was a very good appointment! She was taken off oxygen during the day and only needs it at night now! The cardiologist was not happy with her weight, but we are working on it! Currently, she is not on the charts and is 18 lbs 2 oz last time she was checked. If she hasn't improved by the end of November she will be getting a feeding tube. At first this news upset me, but it has had time to sink in now and I am ok with it if it becomes necessary. There are much worse things in life than a feeding tube! We will go in for an echo the first part of December.

Tomorrow....A little late!

Ok so in my last post, I said i would post again "tomorrow." Well, "tomorrow" has finally came! :)
Zoey is doing really well! We struggled for several weeks with super bad separation anxiety. For the first week, separation anxiety meant if I was further than arms reach. We worked to in the same room, and finally now I can leave her with a babysitter. She had separation anxiety at night too. She slept in our room in her pack-in-play for about 6 weeks after getting home. She started to sleep in her own bed just last week! :) Exciting day!
Having the oxygen hasn't been NEARLY as bad as I thought it was going to be. Zoey does very well with having it on, and actually gets mad when it comes out. It must make her feel tons better to have it in. The one thing I am not quite used to yet about the oxygen is going in public. Before, no one could even tell that there was anything wrong with Zoey. She looked like a normal baby. It is different now that everyone can tell just by looking at her that she has had problems. People make funny comments too, and I am getting used to all of that! I am glad that she isn't any older than she is, some comments I am glad she doesn't understand they are talking about her.
Zoey does so well about taking her medicine! When we open the fridge and she sees the meds, she will even reach for them! So funny!
We have really struggled with Zoey's weight and appeitie. I know that this is a normal "heart baby" thing and eventually, maybe, we will get her back on the chart. She still lost weight even after we got home. Then one week she gained 9 oz! We were thrilled. She has lost some of that though, and now weighs only 7 more oz than she did when we left the hospital. We add whipping cream to her whole milk, put butter on EVERYTHING, and try to get her to eat ANYTHING! I never thought I would feed my kid as much junk food as I do, but sometimes it is the only thing I can get into her mouth! Sometimes she even refuses all food including the junk! I give her a sippy with whole milk mixed with cream and chocolate carnation instant breakfast. It is SO GOOD! She hardly touches it! She has no idea how good she has it! :)
She really regressed after surgery with walking, but she caught back up to where she was last week. She is now walking all over the place! She talks a lot too, although it is difficult to make out any words of what she is saying. One of my favorite things she does is put my cell phone to her head and walks around the house just jabboring like crazy! So cute!
Well, we have a check up next week! I am very anxious for that! I need to post some pics soon, but I don't have my camera with me right now to do that!

WE ARE HOME!!!!

We got home today at about 2:00 PM. Zoey was especially happy to be home! All morning, we had been talking about going home and Zoey just kept reaching for the door with this attitide of "Well, why haven't we left yet?!?!" It is so nice to be home! Zoey has already done so much better here!
I am exhausted from our 12 day stay at the hospital (including surgery day). It is only 9 PM, but I am going to bed! I will post more tomorrow! In the meantime, enjoy these cute pics! All pictures were taken on Saturday, except the last one was taken today!

Post Op Day 10

Today has been a great day! We had a good night sleep last night (a full 6 hours straight)! During the morning rounds today, the doctors discussed Zoey's weight. She has lost quite a bit here and has continued to loose. Zoey hasn't been eating too much which has been a big concern. The doctors decided to see how today went, but that she would probably eat much better at home. The hope is that we will go home tomorrow!
We have spent a lot of time today eating! Well, at least trying to eat. I am really hoping that tomorrow morning she will have gained and then they would for sure send us home! We had a lot of fun today eating and playing!
I see so many sad stories up here, that I think I often forget about how much good is done at this hospital. There are a lot of sad stories, but there are also so many very happy ones! I am so grateful we live so close to such a wonderful place!
I have some very cute pictures of today to post, but for some reason my card reader isn't working right now! I will have to post them tomorrow.

Post Op Day 9

Last night was a long night! After Zoey fell back asleep after vitials, she had a 2:00 AM feeding. That wasn't bad and she did fall back asleep afterwards. At 4 AM a lady came in to take her blood! Are you serious?!?! It is 4 AM and you are waking her up to poke her?!? Well, after that she was very upset and I couldn't get her to go back to sleep. At 5:30 AM I gave up on trying to get her to sleep because I knew she had an x-ray at 6:00 AM she would wake up for. As soon as I gave up on trying to get her to sleep, she fell asleep. It didn't last long because they were actually early coming to get her for her x-ray. We were done with x-ray by 6:00 AM and slept until 8! It was the longest block of sleep we got all night!
Zoey threw up her breakfast, but started keeping food down in the afternoon! She hasn't thrown up since! :) Eating has made all the differance in the world! We even got a few smiles today! They did take out Zoey's NG tube today. Not because she was eating well enough to take it out, but because they thought that she might not have been eating and drinking because she didn't feel like she needed to. I also felt like she was becoming to dependant on it. About an hour after they took it out Zoey started drinking!

I had friends from work come to visit today! Thanks Shannon and Nicole for the visit and thank you my team for the nice gifts!

Post Op Day 8-The Floor

We were transferred out of the ICU this morning! Wahoo! We are now on the third floor, Surgical Unit! Exciting!
Zoey has had a hard time keeping her formula down for a few days now. She has been able to keep down clear liquids, but beyond that she has thrown up. They tweaked a few things today with her formula, gave her a new NG feeding tube, and she has been set! She hasn't thrown up yet! Knock on wood! She has even had her first solid foods since Tuesday the 17th! She didn't have more than a few bites here and there, but it is improvement! She did seem excited to eat today for the first time. They did give her the choice of ice cream though, so who wouldn't have been excited?!? She had a little of yogurt, bananna, pudding, applesauce, crackers, and ice cream throughout the day.
She has been sleeping well today! Another thing to be happy about! She slept good last night and has taken several naps today as well. She did fall asleep at about 11 PM tonight and then the nurse came in at about 11:40 to do vitials. Ugh. She did fall back to sleep afterwards though so it was fine.
Zoey had some friends visit today! Randi brought up Garrett and Embrie! Zoey loved seeing them, but was frustrated she wasn't feeling good enough to play. Thanks for coming!

Post Op Day 7

Zoey is a fighter that is for sure! She has fought and fought going to sleep. She only slept 4 hours last night and didn't take a single nap today. They even did a "sedated" echo today. They gave her a full dose of morfine, and a double dose of a sedation medicine (and I can't remember the name of that med) and she still never fell asleep for her "sedated" echo. She was calm and loopy though with the meds. After the echo was over, I was rocking her on my lap and after a few minutes she looked up at me and with the most suprised tone and look on her face she waved to me and said, "Hhhiii." It was so funny!
By 7 she finally gave in and fell asleep. She had gone 37 hours with only 6 hours of sleep. She was exhausted!
We were supposed to be transferred out of the ICU today, but we are still here. They just don't have enough beds upstairs, otherwise we would be up there. There is still a chance we will be transferred later tonight though.
I did find out today that she will come home on oxygen. This will be a long term thing. I will admit, I was disappointed when I found this out. It will be ok though, it will just take time to get used to. It is a small sacrifice to have her on oxygen for a year or more to have a two ventricle heart. We are so grateful for our miracle.

PS-I keep getting worse, I didn't even take any pics today!