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!

Post Op Day 6

Zoey has been awake most of the day today! The nurse woke her up at 6 AM for a sponge bath and she has only taken two, one hour naps since. Even now, at 11:45 PM, she still isn't asleep. I guess she is making up for sleeping all day for 6 days!
Entertaining a one year old in a crib all day long has been interesting! I thought it was hard entertaining her on the drive home from Southern California--I guess that was just my warm up! She has colored, played with all her toys and then some more, read books, played with all the stuffed animals, played patty cake, played peek-a-boo, played her smelly feet game, sang songs, baa'ed like a lamb, tried pulling off all iv's and everything else attached to her, and about everything else I could think of. I need suggestions! How the heck do you entertain a 1 year old who has to stay still all day?!?!?!?! All she wants is to get on the floor and crawl around or walk and that is quite impossible in the ICU because of everything she is still hooked up to.
Good news! We are hoping to move out of the ICU tomorrow! I am not holding my breath, but that is the hope! We will be transferred up to "the floor," which is almost like paradise in my book. It reminds me a lot of a 5 star hotel--ha ha! It just seems like that anyway going from the ICU. :)
I was so bad about taking pictures today! Grandma and Grandpa Jacobs, Grandma and Grandpa Spencer, Great Grandma and Grandpa Willard, Great Great Grandma Bawden, and Uncle Calvin all came and I didn't take their pictures! I was terrible!
Here are the few pictures I actually took from the day:
Sponge Bath Time!


Zoey in her crib

And she is still in her crib...

Great Grandpa and Grandma Spencer came to visit--and I took a picture :)

This picture I took a few days ago and forgot to post it. This is a picture of the left over material of what they used as the "patch" in Zoey's heart. The missing piece is the patch inside her heart. It is pretty small, but considering her heart is only the size of her fist...it is actually a pretty big patch!

Wonderful Day-Post Op Day 5

Last night after I posted, Zoey had some serious sedation issues. She was kicking and thrashing around like crazy and we couldn't calm her down for anything. She was given 2 extra doses each of Versed and Fentanyl. She was also given 2 other types of medicines (but I have no idea the names) and she was still crazy! After the 3rd extra doses of Versed and Fentanyl she finally fell back asleep. Normally after any extra dose of any of the sedation meds she goes right back to sleep, just not last night! Finally at 1 AM we left our sleeping baby and went home.

I slept in this morning and got back up here at about 11:30. Thanks Mom for getting here so early so I could sleep in! When I got up here they had taken out the other 2 drainage tubes! Yippie! She was once again awake, kicking and going crazy though. I talked to the nurse practitioner and she said they would be taking out the breathing tube in about an hour. Adam came up right away so he could be here when she was extubated! They took her off the sedation meds (well most sedation meds) to extubate. She was extubated at about 2:30! They also took out her NG tube (which was the tube helping to drain the air in her stomach). She is now on high flow oxygen and doing great on that!

Once she was extubated, they kept her off the sedation meds and she is still only on very small doses of them. It is so fun to have my little girl back! We were told she would regress after having this surgery, so I wasn't sure what to expect. At home, she loves sticking her feet in my or Adam's face and watch us give a very dramatic response in telling her how much her feet stink. She thinks this game is so funny and will often stick her feet in our face to watch our overly dramatic reaction. One of the first things she did when she woke up was put her feet in my face! It was so refreshing and relieving to me that my little girl came back so quickly. She didn't laugh or even smile with our game, but she kept doing it to me and also to Adam so she must have enjoyed it still. When her surgeon, Dr Kazza, came in she even tried sticking her feet in his face! Ha ha! Funny little girl!

When she was extubated she got mad and her heart rate would go between 200-210 bpm. Her heart rate stayed really high and stayed between 190-200 bpm for about 3 hours. At this point we were all getting very concerned (think about it....that is like running full speed for 3 hours!) and the nurse asked us to leave so that she wouldn't be over stimulated and would go to sleep. It worked! After we left she fell asleep and her heart rate went down into the 180's. We came back at about 8:30 PM and her heart rate was in the 170's. She fell asleep again and her heart rate went down into the 150's! Yippee!

Mommy getting to hold her baby for the first time since Wednesday!

Zoey started climbing out of my hands to get to her Daddy!

Zoey loves coloring and was trying so hard! Even with her boarded and taped hands!


We had a few visitors today! Mine and Adam's families come everyday but I still haven't gotten pictures of them! Bad me! We are very grateful to them for coming so much though!
Our friends and neighbors, Daniel and Natalie

My cousins, Mark and Katie
This is a picture Adam just took! Doesn't she look TONS better than she has all the other days?!?! She loves playing with her new stuffed dinosaur!


Zoey loves playing patty cake! She was trying so hard even with her boarded and taped hands!


Also, the Walk for Healing Hearts is on Saturday, September 11th. Check in is at 8:00 AM and it starts at 9:30 AM. The location is in Provo at the Riverview Park (4620 N 300 W). It is a one mile event to raise awareness for Congenital Heart Defects, the number one birth defect. Pre-register at www.intermountainhealinghearts.org before August 26th. Pre-registration cost: Individual $10 and Family (immediate only) $50.
Day of Race: Individual $20 and Family (immediate only) $80. Pre-register to ensure your shirt size!

PS- Happy Birthday Shelese! I hope you had a great day!

Post Op Day 4

Not too much to report today. It has been slow, and that is ok! They have been cutting down on the Nitric Oxide and she has been tolerating it well. She will be off of it by 2 AM. Last time when she was taken off of it is when she crashed so hopefully this time it will go better. If she tolerates being taken off of it then they will extubate (take out the breathing tube) tomorrow. We are hopeful that happens!
I do need to apologize to all those who have sent me texts. I can't have my phone on in the ICU and I actually don't even get service until I am outside the hospital so I am really bad about answering my texts! I am sorry! I truly do appreciate all the texts and comments I receive and I am sorry if I don't respond!
Here is a picture of her today, she doesn't look much different, but I like to compare the pictures of her from day to day.

Good Day-Post Op Day 3

Today has been much better! We are almost back to where we were before the problems yesterday! They did take out one of the three drainage tubes. She does have a new tube today down her other nostril. It goes into her stomach and helps to drain her stomach of air and stomach acid. She seems to feel much better now! She has gotten up to goal on her feeds. She is getting 25cc of formula every hour, which is about 5 teaspoons. As small amount as that is, we are very happy! This goes straight into her intestines, so she does still feel hungry. Zoey is very thirsty, but obviously can't drink because of the breathing tube. She keeps sticking out her tongue trying to get something to drink. I am sure she will love the first bottle she gets! Oh a couple of things I wanted to clarify... We only slept in the parking lot one night. The other nights we have left. I still have the mattress in the van though and everyday I go take a nap in the van for a little bit. Back about a year ago I was asked lots of questions about the stuffed lamb in Zoey's bed. It didn't mean anything a year ago, so I never said anything about it. Now, you can see she has 3 lambs in her bed with her. This is because she LOVES lambs! She says "Baa" all the time! It is so cute! They are defiantly her favorite animal, although she loves dogs too. I can't wait until she is better enough to hear her say "baa" again! Uncle Clint and Aunt Alyssa (Ok, well almost aunt...their wedding date is November 18th!) came to visit. I haven't done a good job about taking pics of visitors but I am going to try to do better! Perfect! It didn't last long, but they were very good all day! This is a video of when Zoey was awake a little bit. She kept sticking out her tongue since she is so thirsty

Roller Coaster Ride-Post Op Day 2

Today has been hard. As soon as I got here I saw about 10 people around Zoey's bed. I knew that wasn't a good sign. Apparently they had taken her off the Nitric Oxide and she crashed. She also woke up and was a mad (who wouldn't be with all that stuff hooked up to her?!?). Her blood pressure and heart rate went up and her saturation levels went down to the 70's. They put her back on the Nitric Oxide, raised the oxygen back up to 100% and gave her more sedation meds.
Unfortunately, she hasn't been responding to her sedation meds as well today and she is even on higher doses than she was yesterday. She has woken up a lot when she isn't really supposed to be. It has been hard to watch her wake up and try to scream and cry, but nothing comes out. She is just silent because of the breathing tube. It breaks my heart.
The plan was to take the breathing tube out today...obviously that didn't happen. It won't happen until at least Sunday. She just needs more time. The left atrium in her heart has a lot of pressure right now, this is causing her lungs to be wet which causes her to need the breathing tube. Sigh.
She got a new addition today, her feeding tube. This tube is an NJ tube meaning it bypasses her stomach and goes straight into her intestines. She still feels hungry since her tummy doesn't have anything in it. At least she is getting nutrition :)
Positives about today:
1. She is getting nutrition
2. She is peeing better
3. Oxygen did go back down to 40
4. Heart rate and blood pressure is stable
5. She no longer needs the brain and kidney monitors. (This was the sticker on her forehead.)
5. She is passing gas. She had a lot of air in her stomach that was causing a lot of discomfort for her. She didn't start passing any of it until after feeds were started.
6. No fevers today
7. I don't think she looks as swollen and she did yesterday.
Oh that list does make me feel better! I had to ask the nurse for it cause it didn't feel like she had a good day, but maybe it was better than I thought. :)

Post Op Day 1

Not too much to report today. Last night she came out of sedation more than they had wanted her to. I heard the nurse had to wrestle her back down because she was trying to roll over. They gave her a high dose of sedation meds and she has slept soundly since.
She has warm toes and fingers! Woot Woot! Hooray for warm fingers and toes! Zoey has never had warm fingers and toes.
She is more swollen today, but that is to be expected. She has also had some problems with her kidneys today, but right now she is doing well.
There were 4 goals for today:
1. Increase one of her meds (Mirinone) to 0.75 MCG per hour
2. Try to wean down on sedation meds
3. Schedule Lasiks (another med) 3 times a day
4. Wean down on the Nitric Oxide (a gas that she inhales as part of the breathing tube)
All goals have been successfully met! Yippee!
Here is a picture of our camping experience...ha ha! We didn't want to go home last night so we slept in our van out in the parking structure. It wasn't bad at all and we slept pretty good...minus being woken up by life flight twice. :)

After Surgery Pics

Two Ventricle Heart

No words can describe how I feel tonight. Zoey has a functioning two ventricle heart! Can you even believe that??? Such a miracle!!! She is doing awesome! The doctors and nurses keep telling me how great she looks...I realize this is from a medical, just after heart surgery stand point. Looking at her with that in mind I am sure she does look great...from a mother's stand point, she looks sad. As a matter of fact when I first saw her, I nearly passed out. Luckily I found a chair before I fell over. She will stay sedated tomorrow and possibly Friday as well.

She really has already made great progress though! When we first saw her she was on 100% oxygen and right now she 60% oxygen. They have had to tie her arms down because once her sedation meds would start wearing off at all, she would try grabbing the vent out of her mouth.

I don't have a way right now to post pics but I will tomorrow morning! Goodnight!

2:00 Update

Surgery is officially over. Zoey's chest is closed and they are now getting her stable in the ICU. She was on the bypass machine for 74 minutes and her heart was stopped for 32 minutes, which is awesome!!! We met with the surgeon and he is amazing! I am so grateful to him! Her saturation levels is in the 90's (before her saturation's were between 78-82 usually). Dr. Kazza isn't happy they are in the 90's and wants her at 100%, but he said that over time she should go up. Right now her lungs have more blood in them than they ever have had, so they are wet and once they get used to the blood flow her saturation should go up.

We should get to go see her at about 2:30. Can't promise another update for a while after that! I just want to see my baby!!!

12:00 Update

All the repairs are done! She is off the bypass machine! Her chest still isn't closed. We still won't see her for a while, but that is ok. It is such a huge releif all the major stuff is over. Adam, my mother-in-law, my dad, and myself went and donated blood at the blood drive they are doing here today. Zoey is getting blood today so we felt it appropriate to give back. They actually marked our blood for Zoey, incase she needs another transfusion in the next week. Thanks for the prayers! We have been so blessed!

Surgery Day

Yesturday we had to come to the hospital for pre-op. They did x-rays, EKG, and blood work. They had to poke her 3 times to get her blood. She was quite tramitized after that and cried and cried the rest of the time we were here--which we did the blood work first (not very good planning on my part). By the time I got her to her carseat, was so tired she literally fell asleep before I even turned on the van!

This morning we had to be here at 6:30 AM. She remembered here from yesturday and upon realizing where we were she cried and screamed. They gave her medicine to calm her down. We said our goodbyes at 8:00 AM. We won't see her again until about 2 PM. What am I going to do between now and then....go crazy! I know she is in good hands and I actually feel very peaceful. I have hardly even cried today....so far!

She loved coloring before they took her. It was so cute to watch her color when she was drugged. She was trying so hard to keep coloring even though it was hard to just keep her head up!


9:00 AM UPDATE: We just got our first update. Surgery has started.

Surgery and California Part 1

I have a lot to blog about, but I haven't had much time and I still don't now either! :) First of all, surgery will be this coming Wednesday, August 18th. They will be closing the holes in her heart and moving the wall that separates her right and left ventricle over. Currently, her aorta is connected to her right ventricle and it needs to be connected to her left. Instead of moving the aorta itself, they will move the wall that separates the ventricles over so that the aorta will then be connected to the left ventricle. This will be an open heart surgery, so she will be on a bypass machine.
We will be having a special fast for Zoey this coming Sunday. All that would like to participate are welcome. We really appreciate your support and prayers on her behalf.
We went to California the last week of July! We had a blast! I was a little nervous that Zoey wouldn't have much fun since she is so little, but she loved every second of it! We went with my family and we all had a blast!
On the bus to Disneyland!

Walking into Disneyland

Eating icecream on Main Street USA-one of my fav traditions!

Waiting to ride Dumbo

Riding Dumbo!

Eating at Rain Forest Cafe in Downtown Disney. Zoey loved it and seriously ate like this the entire time!


Mickey!


There was so much to see and do that she wouldn't fall asleep until she was so exhausted she couldn't handle it anymore

Zoey's first Minnie Ears! She wouldn't wear them unless she was getting plenty of attention and compliments on how cute she was! She is such a ham!

Zoey's favorite ride- It's a Small World


The Beach!