Pictures and Update!

Zoey has done really well over the past week. On Tuesday we went to her Pediatrician and she weighed 8 lbs 3 oz! She is starting to gain weight! Yeah! On Wednesday we went back up to Primarys for her follow up visit. They said she was doing great and they were happy with her weight gain. They said that I didn't have to wake her up every 3 hours anymore to eat!!! THANK HEAVENS!!! That was getting old, and I wasn't even waking up to my alarm anymore. Zoey would wake up to the alarm before I would and then she would cry and I would wake up to her crying. So everyone here is getting a much better nights rest now. She usually goes about 4 hours inbetween feedings and sometimes she will even go 5 hours! Yahoo! They also told me I could start trying to nurse her every other feeding. There are some restrictions that go along with nursing her though. First off, she obviously still needs to gain weight. Secondly, she needs to still drink from a bottle since she will be going back up to the hospital for another surgery when she is 5-7 months old. Zoey hasn't shown much interest in nursing though. Has anyone tried to teach a 1 month old to nurse? Any suggestions? I know I just need to be patient, I am just not very good at being patient.

Wednesday night we went to Kiddie Kandids in South Towne Mall and got pictures taken! I love them!

My Little Zoey

Today we went to another Doctor appointment for Zoey. This appointment was with her Peditrition. They weighed her there and she weighed 7 lbs 7 oz...only 2 oz more than when she was born! I had been telling Adam the other day that I thought she was getting so big so fast-but 2 oz in 3 weeks I guess really isn't fast! She is eating good, so it suprised me that she has gained so little. I guess that is what heart surgery and throwing up all weekend does to you though. I want her to stay my little baby-but it would be good for her if she started putting on the pounds!

Being Home is GREAT!

Sorry I haven't updated for a week! Every spare moment I have had I have slept! :) Zoey is doing great! We have really enjoyed her special spirit here in our house. She is a good sleeper at night, and many nights she only has waken up twice to eat.
Wednesday we went in to her Peditrition. She had been eating well at this point and hadn't needed her feeding tube for the whole day. The doctor said that if she went 3 days without using the feeding tube we could take it out. Later that night, she pulled the feeding tube out herself. She must not have understood the waiting the 3 days part-she just knew take it out! We didn't put it back in because she never needed it!
Friday night she started to throw up and would eat very little. She slept very little that night, and wasn't doing any better Saturday morning. We took her back up to Primary's, they determined that she just had a upset stomach and they were just about to release us and then Zoey started breathing really fast and they were afraid that she had a respiratory virus like RSV. They decided she needed to spend the night for observation while they ran some tests. She did really well that night, and they released her Sunday afternoon. Since then she has done great!

Welcome Home Zoey!

We made it! Zoey has done so well! We are so excited to be home! We were released from the hospital today at about 2:30 PM. It is so great to be home! We really have been so blessed. I cannot thank you all enough for the prayers and support each one of you have given. We wouldn't be home today without all the prayers, fasting, and priesthood blessings. Thank you! Thank you! Thank you!

So we were released from the hospital with only one prescription and Tylenol. Can you believe that? It is amazing! She does have the feeding tube, but she doesn't need oxygen! Our insurance is also paying for a nurse to come to our house 3 times a week to check on her and make sure everything is ok. We have to go back to Primary's in 2 weeks for a check up, but that is all our discharge instructions! She is just doing great!

Her shirt says "Follow Your Heart"

Our house was decorated so cute! What a surprise!

The nurse said "Home"

Zoey really has done unbelievably well! It really amazes me how strong she is. She hasn't even needed any pain meds all day today-and she had heart surgery 4 days ago! Geez...I had a baby 2 weeks ago and I am still taking pain meds! She also hasn't needed oxygen today either. She makes leaps and bounds of improvements every day!

We are becoming more and more comfortable with her feeding tube. It really isn't as bad as it looks. Adam even took her old one out and put the new one in. It does make it easier for giving her meds! She has to drink 55 ml of milk every 3 hours. She drank 5 ml today at her 2:00 pm feeding(the rest goes in her feeding tube,) 21 ml at 5:00 pm, ALL 55 ml for her 8:00 and 11:00 pm feeding. If she keeps eating good we will be taking out the feeding tube soon!

So because she is way ahead of schedule, the nurse said they will possibly be sending us home tomorrow! If not tomorrow it will be on Tuesday! She has received such great care up here, but we are sure excited to go home!


They took the dressing off of her incision today. We were a little surprised of how big it was. She is going to have a nice scar! The little red mark on the bottom is from the drainage tube.

Proof she drank her bottle! :)

Mommy got one of Daddy holding her sleeping too!

She had to practice going home by sitting in her car seat for as long as it takes for us to drive home. They did this to monitor her oxygen levels to make sure the incline of the car seat won't harm her. She did great! Looks like she is ready to head home too! She is even holding the car seat straps like she is ready for takeoff!

A Room with a View

Today has been GREAT!!! Zoey has done well enough that they moved her out of PICU! They moved Zoey to "The Floor." The floor is the 3rd floor of the hospital. It is like a 5 star hotel! (Ok, not really, but it is great compared to NICU and the U of U hospital.) We are in our own private room. The room has a good view of the valley, a couch that folds out into a bed, a TV, a Playstation 2, they bring us slushies, and best of all ZOEY!!! In PICU we had to ask for permission to hold her, and the nurses were in charge. Up here we can hold her when we want, we are in charge and the nurses are here to help. It is basically our training for going home! Zoey hasn't needed oxygen for most of the day!

Yesterday, Zoey's doctors came and talked to us about her heart. All of the pictures they have taken of her heart and when they did the surgery has shown her left side to be small, but not tiny. Her left side has seems to be growing. This means that when it is time to do the second surgery they will check again, but if her left side continues to grow she may actually be a candidate to have a double ventricle heart. At that time, she would have another surgery to correct her double outlet right ventricle defect and then she would have a normal heart! This would be such a miracle. We just need to keep praying and leave it in God's hands, but the fact that this is a possibility is a miracle in and of itself. Thanks again for your prayers, we really have seen so many miracles because of it.

Here are some pictures of today!
Zoey all snuggled up after her sponge bath that WE gave her!

Zoey's hands were a little blue after her bath. (This is very normal for HLHS babies)

Zoey had some visitors today, including Great Great Grandma Bawden!

Friday

Friday was another amazing day. Zoey has just done so good it is unbelievable! It really amazes me how strong she is. She got her drainage tube out her side, and she also got her IV out that was coming from her belly button. She also needed a lot less oxygen than on Thursday.
After I did my last post, I realized that I had never mentioned that Zoey had never been able to eat. Up until Thursday she had received all her nutrients through an IV. She tries eating with a bottle, but she gets tired. They had to put a feeding tube in because she hasn't been eating enough. It is very common for babies with HLHS to be too tired to eat enough, so the feeding tube is common. They said that we will be coming home with the feeding tube.

Excellent Day!

Today has been an amazing day! Zoey has done wonderful! At the beginning of the day she had 4 IVs, a breathing tube, a drainage tube (this comes out of her incision), and a catheter. Right now, she currently only has 2 IVs, her drainage tube, and is on oxygen! It has been a miracle! She is doing so so good! Now the big news....she also had her first meal today!!! Yep, that is right, she ate 1 oz of milk and loved it! We get to feed her again at midnight! We really couldn't ask for things to be better.

To answer some questions, we don't know how long it will be until we come home. We were told before surgery to plan on 2 weeks. Because she has done so great today, it may be shorter but we really don't know. The surgeon told us yesterday that she will probably need her next surgery when she is 5 to 7 months old. Her third surgery will be when she is 2 to 3 years old.

Thanks again for all of your prayers. The Lord has truly blessed us in so many ways. We are so grateful for the way things have happened.

She Looks Great!

We just went in to see her. She looks amazing for just coming out of heart surgery. We really couldn't ask for a better outcome. They didn't even need to put the IV in her neck like they were planning. We really are so grateful for how this has turned out. Thank you all so so much for your prayers. We have been so blessed.

She is Out of Surgery!!!!

The surgeon just came and talked to us. Everything worked out great. The surgeon showed us the piece of the auorta that he had to take out. It was the tiniest little thing. The surgeon said that she is very strong. We can't express our gratitude enough for all the support and prayers. We get to go see her soon.

5:00 PM Update

They are done with the aorta coarctation repair. All they need to do now is put the band around the pulmonary artery. Things are going well, and Zoey is doing good. Our next update will be at 6:00, unless they are done before then.

3:45 PM Update

She is in surgery now. She is such a brave girl.

2:50 PM Update

They have taken her away now. They said that it takes about an hour to prep her for surgery. They will update us once the surgery starts. As stressful as it is, we feel very peaceful about things. On average the surgery should take about 4 hours starting now.

1:50 PM Update

The 1st surgery is over. Dr Kaza (the surgeon) came and talked to us again, he said they will come and take her about 3:30 PM. They have to clean and steralize the operating room.

1:10 PM Update

The 1st surgery today must not be over, because we are still waiting for them to come take her.

Surgery Day

Today is surgery day. They will take her at about 12:30 pm into surgery. We met with the surgeon this morning. They will go in from her left side and spread her ribs. They will not break any ribs. She will not be put on a bypass machine. They will be able to clamp her aorta to do the surgery. It is best for her not to be put on the bypass machine. They also showed me a little boy who had surgery so I would know what to expect when she gets back from surgery. She will have an IV in her neck and tubes coming out of the incision for drainage. She will also have the breathing tube in. She will be gone from about 12:30-5:00. They will be giving us updates throughout surgery. I will put a new post on with every update. Also, our Twitter account dropped 90% of our followers, so we are not going to do twitter anymore. Please check back to the blog for updates. Thanks so much for your prayers and support. We really have been blessed and appreciate everyone. Here are some pictures of us this morning.

Tuesday

Zoey was asleep all day. At about 9:30 PM she woke up and we had a lot of fun with her! We even did her first hand and foot prints. She found that torture, but we thought it was fun! Zoey-just wait until your hair gets long enough for mommy to do! That is when the real fun/torture will begin!

Monday

Monday Zoey wasn't very happy. She had a new addition-an IV in her hand. I think she was just misserable all day. Once the night nurse swaddled her tight she was much happier.

Surgery Moved to Wednesday

There were 3 surgeries that had to be done on Tuesday, so Zoey's surgery will be on Wednesday now. We are very blessed that Zoey's condition is good and she can wait until Wednesday.

Sunday

As mentioned in the previous post, Zoey has been so sleepy since they have put her on the PGE. We didn't see much of her eyes all day on Sunday. She tries to open them sometimes, but she doesn't usually succeed. I don't think we saw her eyes for more than 60 seconds all day. Here are the pictures from Sunday!


Even Mommy was sleepy. This is a picture of what Daddy found when he got to the hospital.

Mommy's first diaper change! I just couldn't be left out! Zoey cried for me though.

Night with Daddy

Adam spent the night Saturday night and loved it! I don't know who was spoiled more, Adam or Zoey! Adam got to hold her all night long (from 10:00PM-7:00AM). He even got to change her diaper for the first time! This was the first time anyone but a nurse had ever changed her. When she gets her diaper changed, you would think it was the end of the world by her scream! When Adam changed her she didn't cry! Daddy must have the magic touch! Zoey slept most of the night, and only woke up a few times. Adam went to the restroom and put Zoey down, she started to cry and kept crying until he got back and held her again. This is some pictures from Daddy and Zoey's night together.
I think this picture is so cute-she is holding her own binky in!

She did make some ornery faces, but she isn't crying!

She was awake and alert for about 45 minutes. She has been so tired and sleepy since they have put her on the PGE (medicine to open the duct in her heart.) Daddy was so lucky to have 45 minutes that she was alert and happy!

Needless to say, Mommy was pretty jealous of all the good times Daddy and Zoey had!