Before and After

I know I've mentioned the change in Maddox's color. I still can't believe the difference! It's such a blessing, and a miracle, that Maddox has pink skin and warm toes. Seriously something I'd taken for granted. This first picture is the night before his surgery, he was so blue/gray!

Right after surgery. I was prepared for him to look more like this. I thought he actually looked pretty darn good, and I noticed the color change immediately.

We of course had a wonderful nurse, Michelle, right after surgery. She kept making comments about being a model parent, and handling everything so well. It was embarrassing. Honestly, Maddox looked so much better after surgery than he ever had (even with the breathing tube) that I was just thrilled. I had such peace knowing that he was doing so well and feeling that relief of having surgery over. I couldn't help but smile.

But seriously??? Can you believe the difference? As much as we love blue in this family, we are so happy to have a PINK baby! I just can't get enough of the warm toes. I've probably kissed them more in the past 2 weeks than combined over the past 5 months.

Lights at Temple Square

While Maddox was in the hospital we had lots of help with Bailee. Grandma Bulkley, GiGi and Papa Washburn, and Grampy Spencer were all here to help. Bailee had so much fun, I'm not sure she noticed that I was gone. On Saturday night (Dec 12) GiGi, Papa and Grampy brought Bailee up to visit. She wasn't allowed in the hospital, but we wanted to do something fun with her.

There is a Trax stop right outside of PCMC, so we rode downtown and avoided the traffic/parking mess.  Bailee LOVED riding the train. We ate dinner and then headed to Temple Square to see the lights.

Bailee loved the lights. It was so fun to hear her OOOO and AHHHH over them. She also really loved seeing the different Nativity's. We sure wish Maddox could have been with us for this family picture!

 Bailee really had a fun time with GiGi, Papa, and Grampy. Thanks for taking care of her!

We couldn't have gone to a better place to feel the Spirit of Christmas. The lights were beautiful, but paled in comparison to the peace that I felt as I gazed at the Temple and then at the statue of our Savior. I know that our family is Forever because of the gift from our Savior and the ordinances provided in the Temple. I am so very grateful for the peace this knowledge has given me, especially in the trials of the past 6 months. God is so very good!

Have to try this recipe!

I just saw this recipe on Jeanette Lynton's blog. I haven't made it yet, but I can't wait too! It sounds so yummy!

Best Creamy Pasta Ever

Sauce
7 ½ tablespoons butter
5 tablespoons chopped garlic
3 ¾ tablespoons red wine vinegar
1 ¼ cup chicken broth
2 ½ tablespoons cornstarch
1 ¼ cup milk
2 ½ tablespoons dijon mustard
5 tsp. fresh rosemary
1 ¼ tsp. salt
1 ¼ tsp. fresh thyme
¾ tsp cayenne pepper

2 ½ cup parmesan cheese
2 cooked breast cut in bite size pieces
6 slices of bacon cooked cut in 1” pieces
17.5 oz. of dried penne pasta, cooked as directed on package

1. Melt butter and sweat garlic (don’t brown).
2. Dissolve cornstarch in small amount of chicken broth.
3. Add all sauce ingredients EXCEPT FOR CHEESE, stir with a whisk; and simmer about 10 minutes until thickened.
4. Stir in 2 ½ cup parmesan cheese,set aside.
5. Layer cooked pasta with chicken and bacon in casserole dish.
6. Spoon sauce over top.
7. Top with additional 1/4 c.parmesan cheese mixed with paprika (to add color).
8. Cook at 475 ̊F for around 10-15 minutes until bubbly.

Best Buddies

I was going to start the morning with grumpiness about mornings at the hospital. It's the hardest time to be here. Between feedings, Vital checks, blood draws, chest xrays and Dr.'s rounds (amoung other things) it seems that everytime Maddox falls asleep they're bugging him again. Even as I'm typing he's sleeping so peacefully and here comes Nurse to give him the morning meds. Not that I'm complaining (ok, well maybe a little) they do take really good care of him (and us) here. Mornings are just hard. So I was going to start with grumpiness and then I uploaded some pictures and got to looking through the adventures of the past couple of months. We've had some really great months.

Bailee and Maddox are best buddies and she is going to be SO EXCITED when we get home later today. She's been asking for Maddox to come home, and basically told us not to come home without him. She really loves him, and he loves her! We've done some video messages back and forth for the kids and they've both really liked that. It makes Bailee feel more involved and shows her how important she is to Maddox, and watching Bailee on the video makes Maddox smile and talk. Last week as I was showing him a video, he kept touching the screen. When I told Bailee about that she said "Was he trying to mess up my hair? He's so silly!"

A couple of weeks ago we took both kiddos to see Santa. It was nice to be out together, we really haven't done very much of that since Maddox was born. We've been so careful about where we take Maddox and who is near him. But I really wanted them to go see Santa together, and worried this would be the only chance. This is the first year that Bailee has been excited about Santa. Even though she was shy, she told him just what she wanted for Christmas. A pink scooter. I'm excited for the magic part of Christmas this year. Maddox didn't ask for anything, I wonder what he would say? A new heart? More time? Or maybe he has just what he needs, great care and a great family?

Bailee loves to play with Maddox. She wanted to get into Maddox's crib one afternoon and play with the mobil. Maddox loved it! He often lays on sister's bed and talks to her, but this is the first time she got in with him. He kept looking at her and smiling, kicking his legs and talking. So cute!

Bailee can't wait for Maddox to go to church with her. She loves to show him her pretty dresses, and he humors her with a smile.

This is their first bath together. What a briliant idea! I know, right? Also the last bath in the tub for Mad Dog for awhile. He wasn't loving it, and Bailee wanted her 'space' back. Oh well. They usually are all smiles and giggles when they're together.

A little gloomy

and the weather isn't helping.

I was really really really hoping to go home today. It feels like we've been here forever! And so far it's our shortest stay. It's hard to want to be here when Maddox looks so amazing! This morning was rough for us all though. Maddox was scheduled for a 7:30 am sedated echo. So he couldn't have any food after 2:30 and no clear liquids after 4:30. He woke up and ate at 12:30 and didn't wake up again until 5. Of course he was hungry and there wasn't anything I could do about it. There were a lot of tears and a lot of screaming. Poor baby! He's never loved the binki, and since surgery on Tuesday he hasn't wanted anything to do with it. I finally got him to suck on it a little, enough to settle down. Of course every time I got him settled and either sleeping or playing someone would come in and bug him. For REAL! So at 8 we still hadn't heard anything. I went to find out what was going on and the Dr.'s were making rounds. They had the nurses call to find out when we could come down (they had to do it in the CICU). When we finally got down there no one was prepared, they realized he needed a new IV, and everything was taking forever. They finally got started at 10! Needless to say, we had a very grumpy, very hungry little boy on our hands. After the echo we had to wait for sedation to wear off before we could start clear liquids. The little tough guy sucked down the Pedialite and went back to sleep. Poor thing! On the plus side, Maddox got to hang out with a favorite nurse, and a few other favorites stopped by to flirt.

Since we've been back to his room, he's been eating but not happy. Hoping that once all of the drugs get out of his system he'll feel better again.

It's crazy for me to think that he just had OPEN HEART SURGERY on Tuesday. For the 3rd time in 4 months. It was just 5 days ago, but I think it feels like forever because it's almost 'old hat' to be here. I can't believe how easy it was to slip back into the CICU routine and the hospital routine. At times it felt like we hadn't left. And then I remembered how wonderful it was to be home with him. All of us together. Soon. I know we have much to be grateful for, and we are. Still, long days like today are....well....long.

Too pink?

Never thought I'd worry about Maddox being too pink. Last night I was holding him and noticed he was super pink/red. I thought maybe he was getting too hot. I asked the nurse about it and she took his temp. Maddox was actually a little cool. Nurse told me it'll probably take awhile to get used to his new color. Funny.

Today Luke and I are hanging out with Maddox. He has been talking and GIGGLING all morning. It's been so fun. Seriously loving it. I was holding Maddox and talking to him. He was leaning his head back, doing a back bend trying to watch the basketball game that was on. I finally just turned him around. That's our boy!

So today the plan is to up Maddox to 30 cal milk (done) and continue monotoring oxygen levels. All is well. Tomorrow morning He'll have a sedated echo around 7:30 am and they'll talk about sending us HOME. YES. Maybe as early as TOMORROW! We are so looking forward to getting home and being all together again. Just in time for Christmas!
Luke was brought home on Christmas Eve, in a stocking. I don't think Maddox will fit in a stocking. But we did get him a warm snuggly snow outfit to wear home, and for our upcoming outings! It's going to be so nice to take him places. We'll still be cautious and ask sick people to stay away, but we can share him a little more. Yeah!

By the way...

We're in 3088 if anyone has to come up and wants to visit.

The Suite Life of Maddox and Mommy

We got moved upstairs about 4 this afternoon. The suite (as we so lovingly call the rooms upstairs) is nice and quiet. I was going to upload some pictures, but Maddox fell asleep in my arms and I can't reach the camera or the cord. Oh well, later.

I know I keep saying he's doing AMAZING. But he really is! You'll be surprised when you see how pink he his now! Anyone who's seen him lately will remember how gray/blue he's been. I don't think he's ever been this pink. And his toes are warm! That's a first too. It's amazing what a little blood flow will do for you.

This trip to PCMC has been nice, as far as trips to the hospital go. It was planned, I was prepared, and everything has gone about how I've expected. Maddox is such a tough little guy! I can't believe how happy and good he is, considering he had OPEN HEART  surgery just 3 days ago. He is healing wonderfully and in very little pain. It seems to be uncomfortable when he coughs (duh!) but other than that he seems pain free.

Maddox had a swallow study just after noon today. He passed with flying colors, of course. As soon as we got back to the CICU (cardiology intensive care unit) he drank a whole bottle and didn't even get tired! Its so nice to be able to hold and feed him again.

He's on oxygen, has an IV (for drawing blood) and still has pacer wires (that he's never had to use). He only has 1 more med than what we had at home, but it's one that he's had before. So things are good. We're ready for home!

We're talking about going Monday afternoon. They want to monitor his eating and see him gain weight (like that'll be an issue....) over the weekend and then do an ECHO Monday morning.

Bailee is so ready for Maddox to come home. She basically told me this morning not to come home without him. I'm glad she loves him so much! She was so disapointed when we told her she couldn't come to the hospital.

So we'll keep updating, and hopefully I'll get some pics added later tonight or tomorrow.

Rockin'

Maddox is doing AWESOME! This morning when I arrived he was smiling and talking to our nurse. (who happens to be a favorite from our first visit) He's been very happy and content today, and has slept peacefully. I'm glad he's getting some good rest. We're waiting for the RA line (iv that goes right into his heart), pacer wires (that thankfully have never been used), and Art line to be taken out. It has to be done while a Surgeon is available, and they've been in surgery all day. Should be pretty soon though. EDIT: Just got word it'll be awhile longer, the other surgery is taking longer than anticipated.

After those are out and Maddox is settled down we'll give him a bottle. We had a discussion this morning about how to move forward with feeding and enough agreed with me that we aren't going to start with a feeding tube. We'll give him a thickened bottle and watch him. If there's any concern about aspiration we'll put  a tube in. I'm not anticpating a problem though.

Later tonight or in the morning they'll take out chest tubes and the only thing left will be oxygen. (which we will go home on) I'm thinking maybe we'll go to the floor tomorrow? That's just me talking though. EDIT: I guess the ICU Dr. is ready to kick us out today. But since we've been delayed getting these lines out we'll have to wait until tomorrow. And nurse says 'he thinks' as soon as Maddox is eating well we'll be home. Yipeee! Love these guys, but not enough to stay longer than necessary!

I got to meet Maddison's family. She's such a cute little girl. (You can check out her blog under heart friends) She had a transplant last Friday! Amazing! It just incredible what these Dr.'s can do. I'm not looking forward to the day when we start talking transplant, but I take comfort in knowing (and seeing) what the Dr.s can do and how well they do it.

I'm glad things are going so well and moving right along. I can't wait to show Maddox off to everyone! You won't believe how pink he is now! He was so blue and lately so grey that this pink is WONDERFUL!

Sigh of Relief

Well, the surgery went well today. It has been a long day, but Maddox is doing great. When we left for shift change he was still sleeping. They have been keeping him sedated trying to get his blood preasure down. He also has been bleeding quite a bit and we were worried for awhile that Dr. AK would have to take him back to the OR and stop the bleeding. However, it seems to have slowed considerably and is clotting nicely. Once that is under control they will let him start waking up and extubate him. He can have clear liquids 6 hours after extubation, and if he tollerates that we can feed him. Sometime tomorrow. Poor baby! Maddox is such a little fighter though, and we are grateful or that!

Will update again soon!

Tomorrow is the day

A day I never would have imagined would come.

A day I never thought to hope for.

A day I never will forget.

A day when we will witness miracles.

A day when Angels will watch over us.

A day full of happiness and sorrow.

A day in which I cannot fully anticipate the results.

A day for which I will be forever grateful.

A day of strength.

A day of peace.

A day of Hope.

A day of Faith.

A day of Prayer.

A day when I hand my burden's to the Savior and turn my will over to HIM.

A day of familiar faces and new faces.

The 29th anniversary of Luke's own heart surgery. I keep thinking that I hope Maddox get's to celebrate that milestone.

Tonight I held Maddox as 3 of the most important men in my life gave him a blessing. I saw hands laid upon his head. Priesthood hands.I wish I had a picture of that moment, I hope it stays forever in my heart. Other hands were there, unseen but felt. I know that Van is with us and watching over Maddox.

We'll try and update as often as possible. We so appreciate all the prayers and thoughts for Maddox and our family.

Update: We're home!

Suprised? I am. I was 100% sure I'd be staying the night at Primary's. Even when Dr. Cowley said they'd try to have us out of there by 4, I was skeptical. But we were home by 5:30.

Maddox did great. I was not looking forward to seeing him intubated again, and was grateful that I didn't have too. He came off the ventilator just fine, and was off before they left the Cath Lab. I was also not looking forward to being in the PICU, where I thought we'd be sent for recovery. I was really nervous about this procedure for some reason, and I really didn't want to see all of the sick kiddos in the PICU. I get so sad for the other families and worried about their kiddos, and today I really didn't want to feel any of that. I'll deal with it next week. It was strange to be at PCMC and not have our PICU family there. I wonder who we'll meet next week.

While in recovery they watched Maddox to be sure he didn't bleed at the site where they put the cath in. Shortly after one of the times the nurse came to check, I adjusted Maddox and discovered blood had soaked through his blankets and into my lap. The first thing that came to mind was Luke's only memory of his cath when they did the ballooning of his aorta. He remembers his wound gushing blood and them putting a sand bag on it for preasure. I was actually relieved to find that it wasn't Maddox's let, it was his IV leaking. Luckily I had packed an overnight bag and was able to change.

Maddox did well, me...not so much. Between lack of sleep last night and lack of proper nutrition today I got a migrane. Am I ever going to learn? Thankfully I was able to sleep on the way home and take a good long nap when we got here. Maddox slept for several hours and Luke hung out with Bailee. I'm so grateful for him! He's the best daddy and husband ever. I know this is not how he would have chosen to spend his birthday, but Luke is so unselfish that he always puts the rest of us first. I was glad we celebrated last night, it made me feel not quite as bad for today.

So Monday we go back to PCMC for the pre-op work up. Chest xrays, blood work etc. I think I'll get to meet with Dr. AK and Dr. Pinto and have a good idea of the plan for the surgery. Dr. Cowley showed us the pics from the cath and we saw the blood flow through the shunt, it's narrow but functioning. We also were able to see the narrow left Pulmonary Artery, but he said that it looks fine. It was crazy to be able to see the difference between the left and right PA. I really am amazed that looking at this stuff and talking about it makes any sense to me. I find myself spouting off procedures, medications, and diagnosis without even thinking and wondering how I retained any of that info. I credit the amazing Dr.'s and nurses that are so thorough and so willing to repeat things as much as necessary. The other thing Dr. Cowley mentioned was the narrow Aorta. I am going to ask Dr. AK about that. They enlarged it with a graft when Maddox had his Norwood, so I'm wondering if it's still narrow and if they'll have to enlarge it more?

Anyways, we are looking forward to enjoying this weekend with our little family and spending some good time together. It's our Stake Conference and Elder Perry will be here, so I'm really looking forward to our meetings. I love Stake Conference! I always learn so much, and often get the strength and answers I need. We are having a special fast for Maddox (and some other family members) that day too, so please keep him in your prayers.

Out of the Cath Lab

Maddox is out of the cath lab. We should be able to go back and see him really soon. Dr. Cowley said everything went well. We got to see the images, that was pretty cool. It's kind of funny that  6 months ago I wouldn't have known what I was looking at, or what the Dr.'s  were talking about. Today as they talked about different parts of his heart and showed us the pictures I knew what was going on. Hmmm.

Can't wait to hold him again! I'm sure he's starving, but we'll be able to feed him as soon as he's awake enough to eat. Dr. Cowley said we should be able to leave by 4! Crossing my fingers!

In the Cath Lab and Happy Birthday Daddy!

We arrived at Primary's bright and early, 6 am! Maddox was a little trooper while we waited, and when the nurses came to get him, he was all smiles. He hasn't eaten since 11:30 last night, so I was expecting some major grouchiness. The Cath should take about 3 hours, so we're hoping he'll be done around 11. Then we can expect at least 6 hours of recovery time. He looked pretty cute in the hospital issued PJ's. They were so big on him! (I was going to post a pic, but this card reader isn't working.)

After they took Maddox into the Lab, Luke and I went and grabbed some breakfast. I realized that I've left the cell pohone in the diaper bag which is hanging out in the Lab with Maddox. Nice. So hopefully it won't ring a bunch of times and cause problems. Now we'll just wait of this pager to go off, and then go pick up our sweet little guy.

Today is Luke's birthday! I'm glad he got to take the day off, but sorry we'll be spending the whole time in the hospital. Last night we celebrated and let him open his presents. I made Orange Chicken (it was delish! I'll post the recipe soon) and fried rice. For dessert we made Orange Julius. Luke let Bailee help him open his presents, and she thought that was the best. I'm not sure that he had any surprises though, Bailee told him about at least 2 of his gifts before. Time to start keeping secrets from her! She's so funny!

Last night Mom B. told us that Luke had his surgery on December 8th. That's when Maddox's is, 29 years later. It's kind of crazy! Look back a few posts for pics of Luke before his surgery.

Bailee is loving the holiday season! I hope we can make it extra special for her, despite spending the next few weeks in the hospital. She has been dancing around the house singing "It's a Jolly Roger holiday". We think it's a mix of a song from Mary Poppins, and a Christmas song, but we're not really sure. It's so cute though. She says all of the time "Mom, I really am a rock star." And she is, unless she's Snow White. Then she's a princess. That girl keeps me laughing, and I'm so glad she's home!

Well, we'll post updates later when we hear more.

Gingerbread Cookie Cupcakes!

I saw these on Good Things Utah (of course) today and couldn't wait to try them. From Wendy Paul, Author 101 Gourmet Cupcakes in 10 minutes. (I'm totally going to have to get this book!)

Ingredients:

1 box spice cake mix
3 eggs
1/3 cup molasses
1/3 cup oil
1/2 cup milk
Grated orange zest, optional (but highly recommended!)

Mix together cake mix, eggs, molasses, oil and milk. Pour into paper liners and fill 3/4 full.
Bake at 350 degrees for 15-18 minutes until the cake springs back when lightly touched. Cool completely before frosting

Cream Cheese Frosting
8 oz. cream cheese, softened
1/2 cup butter
3 3/4 cup powdered sugar
1 teaspoon vanilla

Beat together butter and cream cheese until light and creamy. Add sugar and vanilla. Keep the speed slow on your mixer to avoid sugar flying everywhere! Mix together until creamy and smooth.

We made these tonight and they were so YUMMY! I loved the orange zest on top, perfect Holiday flavor! I had cream cheese frosting left over from the Cinnamon Rolls I made last week, so it was even easier.

Next I'm going to try the Candy Cane Cupcakes.

Candy Cane Cupcakes

1 box white cake mix
3 eggs
1 cup milk
1 teaspoon vanilla extract
1 recipe vanilla butter cream frosting
Peppermint candy for garnish
1 cup white chocolate chunks or chocolate chips

Mix together cake mix, eggs, milk and vanilla. Pour batter into the paper liners and fill 3/4 full.
Bake at 350 degrees for 15-18 minutes or until cakes are light and golden brown, Remove from the oven and cool completely.
Frost with vanilla butter cream frosting and top generously with crushed peppermint candy and white chocolate chunks.

Vanilla Butter cream Frosting
8 tablespoons butter, room temperature
3 3/4 cup powdered sugar
2-4 tablespoons milk or cream
2 teaspoons vanilla extract

Place butter in a large mixing bowl, and beat until light and fluffy. Stop mixer and add sugar, milk or cream, and vanilla. Begin to beat frosting with your mixer on slow speed, gradually increasing until frosting is thick and creamy to desired texture. Add up to 1 more tablespoon if frosting is too thick. Frost cooled cupcakes.