Monday, December 21, 2009

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!



Saturday, December 19, 2009

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.

Monday, December 14, 2009

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.


Sunday, December 13, 2009

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.

Saturday, December 12, 2009

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!

Friday, December 11, 2009

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.

Thursday, December 10, 2009

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!

Tuesday, December 8, 2009

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!

Monday, December 7, 2009

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.

Friday, December 4, 2009

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.

Tuesday, December 1, 2009

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.

Sunday, November 29, 2009

One more thing....

I realized that I haven't posted an update about Maddox's surgery. Wednesday, on my way home from little Abel's funeral, I got the call.

We are moving forward with the stage 2 Glenn surgery. We will take Maddox in on Friday (Dec. 4th, also Luke's birthday) for the Cath Lab. Then on Monday the 7th, he'll have his pre-op appointment and bright and early on the 8th we'll hand our little guy over to Dr. Kaza for a few hours.

Bitter sweet. I am thankful that Maddox is able to have the surgery, and that we all are on the same page feeling like it's time. But as I sit here holding him while he's sleeping so peacefully, it's hard to imagine him going through another open heart surgery. 4 1/2 months old and preparing to be opened for the 3rd time. Makes me queasy.

I keep hoping for one more giggle, even if it's in his sleep. I hold him longer while he's sleeping. I try not to think of the days in the oh so near future when the only thing I'll be able to do to comfort him is rub his head and be there for him to see me. Or will that make it worse. Mostly we are going to enjoy some quiet family time in the next 9 days and continue cherishing each moment.

For those who are willing, we will be having a special fast for Maddox next Sunday. We are so grateful for all of the fasting and prayers that have been given on his behalf the past few months. We have seen miracles large and small and appreciate so much the faith of our friends and family.

My Princess is HOME!

I am so happy to have Bailee back! That was like the longest 2 weeks of my life! I told her she couldn't go back to Grammy and Grampy's without me again until she is at least 6.

Today she told me that she misses them and wants to go visit again. But "Just for 6 weeks this time." Six weeks??? Are you kidding me??? She obviously doesn't have a clear concept of time.

So tonight Bailee and I went to a wedding reception. Our conversation went like this.
Mom: Bailee, let's go to the wedding now.
Bailee: Will she have her own handsome prince?
Mom: Yes, she will.
Bailee: What's his name?
Mom: (tells Bailee his name.)
Bailee: Well that's a weird name for a handsome prince.
later at the wedding--
Bailee: Is that true love?
Mom: What?
Bailee: That boy and girl right there (points to the couple at our table). Is that true love?
Mom: I guess so.
Bailee: Are they going to get married today too?
Mom: I think they are already married.
Bailee: Oh, did we go to their wedding too?
Mom: No, I've never seen them before.
Bailee: Aww man! I wanted to go to their wedding too!

This little girl is OBSESSED with anything to do with getting married. She thinks all brides are princess' (they are of course) and all grooms are handsome princes' (most of them are...). Several months ago Bailee kept telling us she didn't want to get baptized because she would get water in her eyes. Since we have another 5 years before we really need to have that conversation, and I knew she'd get over by then, we didn't try and change her mind. Until one night after she'd told us at least a dozen times. I finally said "Well, if you don't get baptized, you can't get married in the temple." Of course from that time on she can't wait to get baptized so she can get married in the temple. If she's this obsessed with it now, heaven help me when she's older!

Friday, November 27, 2009

Naps + football + planning black friday shop= Thanksgiving afternoons




First Bites

I hadn't planned on giving Maddox any 'real' food until after his surgery. Figured it would make things a little easier. But on Wednesday I was eating some home-grown apple sauce (thanks dad!) and gave him a little taste.

Then while we were eating Thanksgiving dinner, I decided to give him a little rice cereal. He wasn't quite sure about any of it, but he liked holding the celery!



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Thanksgiving

Since we couldn't travel for Thanksgiving this year, some of our family came to us! It was way fun. We missed being with the Bulkley's this year, and we were missing Trina and James.
Maddox finally got to meet Papa and Gigi Washburn and loved them, of course! He smiled and talked to them anytime he could see them.
Carving my first turkey.
Enjoying the yummy food and great company!


We even had a 'kids' table. Bailee loved hanging out with Aunties Tressa, Tami and Trudi. Bailee is sure that Trudi is 5 years old and that she put a dragon and a donkey in Bailee's closet. Hmmm.

Maddox





Tuesday, November 24, 2009

I saw this on someone else's blog and thought it was so sweet.

I Will Make Your Heart Whole Again

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks, “Will I be okay with only half of my heart?" Jesus replies,” Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." Author unknown

Thursday, November 19, 2009

4 Months and counting

Maddox turned 4 months on Monday! I don't think anyone, including me, really knows how big of a milestone that is for him. 4 months ago I didn't know if he was even going to make it through surgery, or if I could be strong enough to be his mommy. He did, I am.

I will find the camera and upload some pictures later.

So 2 nights ago I was downstairs scraping wall paper. Luke was at YM, Bailee's still at grammy and grampy's, and Maddox was asleep. I felt alone. It was too quiet and I had too much time to think. I thought of everything that I have gone through the past 4 months. This always makes me feel guilty, because I know how blessed I am. Others would gladly take my bad days over theirs, and a baby with lots of medical issues over no baby at all. I know that. But I had a little epiphany. It's ok for me to loose it now and then. It's ok for me to not be strong once in awhile. It's ok for me to feel sad and angry about what I am going through. It's ok for me to cry and let it all out. I don't have to bottle it all up to spare someones feelings. That doesn't make me selfish, it makes me human. So I cried. And I felt. And I prayed. And then I smiled and am moving on. I hope I do have another day like that.

Last Thursday we met with Dr. Pinto, Maddox's cardiologist. She confirmed my thoughts about moving forward with the next surgery. I can see my little guy declining, though it is subtle, and I'm ready for him to have the next one. I know it'll make a huge difference in his little life, and he'll feel better. So Maddox will be having his next open heart surgery within the next 3 weeks. Never would have imagined being glad about something like this. But I am. He'll be in good hands when we turn him over to Dr. Kaza, and he's in the Lord's hands. That's the important thing.

This is one special little boy and I am so proud to be his momma. Sometimes I wish the Lord didn't trust me so much, but I am happy he trusted me with Maddox. I wouldn't trade him for anything. I am also so thankful he blessed me with Bailee. I couldn't get through this without her. She is my best little buddy and brings a smile to my face every day. She makes me stronger and want to be better. Love that little girl and missing her so much! And Luke. He's just simply AMAZING. Each and every day I am grateful that the Lord brought us together. I am blessed. I am grateful.

Monday, November 9, 2009

New Pics of Maddox!

So Nicole was up last weekend and was sweet enough to do some more pics of Maddox. I have been checking her site several times a day because I knew they would be AMAZING! And they are! Check them out by clicking HERE!

Sunday, November 8, 2009

Preparation

It's a miracle to me, as I look back over my life, how the Lord has prepared me for the things that happen. The timing of things both baffles and amazes me. I do wish I would take the time to write these things down more often.

A few weeks before Dad B. passed away our Bishop asked us to pray for our neighbors. He told us that there is a lot of pain and suffering among our ward members that we just don't know about. It touched my heart and I did take that challenge. I tried to remember my neighbors and ward members in my prayers, and also specifically asked for direction in how to serve them. In the days that followed dad's passing, I reflected on these prayers. It brought me great comfort knowing that our neighbors had been praying for us, even before this trial.

The weeks after Dad's passing were filled and busy. First with the funeral arrangements and the Bulkley family being here, Mom B. leaving for Hawaii earlier than expected, then with the Spencer family being with us and Bailee's birthday. I reflected a lot in those days about the plan of salvation and the way God prepares us for trials. I remember thinking specifically about the peace that I feel knowing that our family is sealed together, forever, and that no matter what happens we are family.

These weeks after Dad's passing were also the weeks leading up to Maddox's birth. I didn't know that I was being prepared for another trial, but the Lord did. Mom and Dad S. had been asking to take Bailee for a week or two before Maddox came so that I could rest and do whatever I thought I needed to do to prepare for his arrival. I felt so strongly that she should stay, that I needed this time with her. There were moments when I wanted to let her go, that I tried to convince myself that it was my 'anxiety' talking, and I actually felt selfish for wanting to keep her with me. However, deep down I knew that I needed her. We spent time talking about the baby, planning for his homecoming, and doing what I thought was necessary to prepare Bailee for this change in our lives. I tried to spend as much time reading to her, playing with her, and focusing on her. I wanted to remind Bailee how much I loved her and needed her.

The morning we went to the hospital I was a little overwhelmed. I actually kept putting off leaving for the hospital because I suddenly felt un-prepared for this new baby. I worried about leaving while Bailee was asleep. I didn't want her to wake up to find us gone, I didn't know if I had prepared her well enough. I was so happy to see her when Grammy S. brought her to the hospital shortly before Maddox arrived. I was sad when I knew that they would be taking our baby right to the NICU when he was born, and that she would have to wait to see him. I hadn't prepared her for that. She only saw Maddox briefly as he was rushed past her to the NICU. As the hours passed and we waited to have Maddox with us, Bailee and I talked and rested and watched Hannah Montana. And we waited.

When the Dr.'s came to tell us that Maddox was very sick and needed to go to PCMC, I thought of Bailee. How could I have prepared her for this? What do I say to her now? How can I answer her questions when I have so many questions of my own? How could I possibly rush off to be with Maddox and leave Bailee alone? How could I not? I again thought of our neighbors praying for us, and was grateful. I knew that those prayers would get our family through whatever was ahead of us. God had prepared us, and we would be ok.

I will never forget that first walk down the hall of the PICU. I looked at these parents next to these sweet little children and wondered how in the world they could look so calm and even happy. I was trying to imagine how they were dealing with such a trial, and my heart ached for them. How can you prepare for something like this? I didn't know if my son was going to live or die. I didn't even really understand what was wrong or what the Dr.'s could do for him. I certainly didn't know that those nurses and Dr.'s gathered around were truly angels. What I did know is that our family was forever. I was grateful to have that peace and knowledge come into my heart. Whatever was ahead of us would be hard, but with the Lord on our side we could handle it.

I was amazed at how quickly I became comfortable in the PICU and with the medical terms used to describe what was going on. Strange as it sounds, PCMC is a little piece of heaven on earth. Miracles occur their continuously and there is a spirit there like no where else I've been. As I came to know the nurses, dr.'s and other families around us I was continually reminded of how blessed we are. We saw a lot of hard things there, and it seemed so strange to me that I could actually be grateful for the trial we had. But I was. And I am.

Even through the scariest of times, which was definitely when Maddox had the infection, I felt such peace in the Lord's plan. I remember when we were taught about the feeding tube, the medications, and the pic line thinking how familiar this felt. I thought often that it seemed wrong to be so comfortable with this stuff. Why wasn't I more frightened? Where were the nerves? How was it possible that I was feeling confident about caring for Maddox and handling all of his medical needs? There's only one answer. The Lord has been preparing me for this my entire life. There are specific trials and experiences that I have had that are helping me now. Things that I was not grateful for, things that I had often wished had never happened. I couldn't see the big picture.

Some of this experience comes from being Tressa's sister. I helped my parents care for her. I learned about her medications and how to give them. Her medical needs were so common place and such a normal part of our life. I don't think I ever gave them a second thought. When the Oxygen concentrator was delivered to our home for Maddox it was familiar. I already knew all about this machine and how it worked. It didn't make me nervous at all. The medications weren't that difficult, and the feeding tube didn't feel like such a big deal.

Some other experience came from a time in my life that I don't really like to talk about. These were some of my darkest days, and ones that I had never found a reason to be grateful for, until now. In May of 2002 my boyfriend was diagnosed with cancer. I spent months at the hospital with him, and at that time became very familiar with the hospital and the way things work there. I had good and bad experiences. I was glad when that time in my life was over. Looking back now I can see how even that time prepared me for now. That experience combined with my experience with Maddox has given me a different perspective than I could have gained otherwise.

I look at life differently now. I try and enjoy each moment. I am learning that every trial and experience prepares us for the future, especially the hard ones. I am thankful that God loves us enough to prepare us and that He gives us the tools we need to overcome all things.

"there is no strugle for which the Atonement of Jesus Christ is not sufficient."

Sunday, November 1, 2009

Happy Halloween!

BEWARE! Blog overload!

Bailee needed a nap before going trick-or-treating. She couldn't wait to get into her costume in the morning. Fun.
Maddox was chilling out while we moved stuff and looking cool in this cute pumpkin shirt that Grammy gave him.
We went to the ward trunk-or-treat. It was so fun to be out, all of us together. And to show off our little guy. I found this caution tape and thought it was fun and practical...it kept people from getting too close to Maddox. And look! Those extra medical supplies even came in handy. Don't worry, it's just koolaid.
Here's Mad Dog chillin at the trunk-or-treat. I LOVE his costume, my favorite part is of course the heart. So cute.

Our Room

Love our new room. I'm going to put a quote and some pictures in the headboard area. There's still a few things I want to do in here, but I love the colors and how it's turning out.


Moving Day

Yesterday was a bitter-sweet day. We are so sad that Grandma B. is moving, but so happy for her at the same time. In the morning we went up and got the big truck and then had lots of helpers in the afternoon. We really appreciated everyone's help.

(we're going to miss that grandfather clock. It's quiet without it)

More Pumpkin Fun

For family home evening last week we carved and decorated our pumpkins. Bailee didn't really like the goo at first, but got into it pretty quickly.
We love the faces that Grammy and Grampy gave us last year. They make such cute pumpkins and create ZERO mess. Love them!
Bailee with her pumpkin patch. We grew the 3 smallest ones (along with the two little ones that the girls painted). The one with the long stem is the one Bailee picked at the pumpkin patch, and the carved one we picked up so we could have a big one.
Fun times!!

New Floor

Mom and Dad S. came to visit and helped us put in new flooring. We are doing this wood in the master bedroom, hall, and upstairs living room.




We got the bedroom and hall done, and will finish the living room next week. Thanks Mom and Dad!!!

Painting Pumpkins

About 3 weeks ago McKinley came over after dance class. (while Lyss and Steve were in Hawaii...jealous.) But anyways....
We had grown these cute little pumpkins and I decided to let the girls paint them. I carefully put little puddles of different colors on each of their plates. Lots of different colors. I was excited to see what they did with them......

Well, McKinley swirled them all together and came out with her favorite color. Purple!
Bailee painted little spots different colors, didn't mix the paints, and rinsed her brush often. Then she painted pink over the whole thing.
I was going to take a picture of the girls with their finished projects but when I left for a second to do something for Maddox.....

McKinley painted her feet and face purple. I got a little distracted with cleaning up the mess.

The important thing is that they had fun, right??

Now and Then

This was not the first view I wanted to share of the play room....but here it is. On Wednesday, McKinley came over to play after dance class. I heard them giggling and peeked in to find this.....
....and this....
....and this.
And it reminded me of this..... (May 2007)

Thursday, October 22, 2009

Did I mention....

That Maddox gained another 5 oz this past week!! So excited. The bigger he can be before the next surgery, the better. Each oz is a blessing! He's eating from the bottle like a champ and growing like a weed, only much much cuter.

I have to scan and share a few more pics from Luke's younger days that I found. Maddox has his daddy's smile, so cute!

Bailee is becoming more of a diva everyday. I love it, except when it drives me crazy. :) The best thing I've done for her (well, probably not the truly best thing...and it may be more for me) is get her a closet space saver bar. It puts the clothes at her height and she LOVES it. My 3 year old hangs up her own clothes! And now that she can reach her dresses she gets dressed herself. This morning she put together a brown ensemble and came to me saying "Can we go somewhere today so I can go out in this outfit?" So cute. I need to take a picture. Bailee continues to love dance class and when we ask her to show us her dance she tells us it's a secret. I guess we'll have to wait for the recital. She's always dancing around the house and being Hannah Montana. When I asked her where she got her sweet dance moves I shouldn't have been surprised when she said "From Grandpa Spencer". That's a pretty typical answer. That's where she grew so big, because she drank her milk. It's where she got so smart, because he lets her watch Mickey Mouse Clubhouse whenever she wants. It's where she got so cute. Yeah, pretty much the answer for everything. This girl cracks me up (and Brad, just ask her) and I am loving this age. (except for when it drives me crazy. Oh wait, I already said that.)

Luke continues to work so hard. We appreciate his sacrifice and willingness. I know it's not easy for him, but he does his best and is incredible. He's got a lot on his plate right now, but if anyone can handle it, it's Luke.

More pics of the house projects next week! Getting super excited about getting things done! And did I mention that I can't wait to put up the Christmas tree?? But I will wait until Thanksgiving, I promise! It's going to look so good in our new living room!

Oh, and Grammpy???? Bailee really needs a real tree this year. If she says pretty please do you think you could bring her one??

Tuesday, October 20, 2009

5 things to share

Bailee and I made homemade Drumsticks, you know the ice cream ones that are so yummy! Thanks to Kinsey for posting this great idea. Go here to see their creations and for step by step directions and pics.

I was preparing for my last YW lesson and was lead to this amazing talk by President Ucthdorf. It really helped me last week, and was just what I needed that day. I am sad to be released from YW, but I know it's the right thing for now. I really loved the girls and leaders, and am so grateful for being able to get to know them all! And I'm super sad to miss girls camp next year.

Luke was called to serve in the YM organization as the Teachers adviser, and released as a Sunday School teacher. I was now without a calling, and accepted the call to teach his class. It's a little scary to think that next year we'll be studying the bible. I don't know why that intimidates me, but it does. But I'm sure I'll learn something. So in preparation for my first time teaching this class, I was reading in D&C. The first scripture I read was this. The line that stuck out to me the most was "but if ye are prepared ye shall not fear". Crazy. I need this lesson too! It's something that I've been thinking a lot about lately and have seen this come to pass in my life. We've been truly blessed by trying our hardest to be prepared in all aspects of our lives. At this time, I'm especially grateful in the financial area. We've been saving what we can for a few years in order to buy a home, but when Maddox was born and we were surprised with some extra medical expenses, it was nice to know we would be ok. It wasn't what we had planned for, but we were prepared, and I'm grateful for that.

The moving and packing and shuffling and projects continue. Yesterday we moved entertainment centers, tv's, bedroom furniture, and couches. Thanks to Luke and Jake for the heavy lifting! Now the kids have a play room/guest room and Bailee thinks it's awesome. Mom and Dad S. are coming this weekend to help with floors and some other projects. I'll be glad to be done with the big projects and to finally get organized. I'll get some more pics posted as we finish some of these things up. We are sad to think about Mom B. leaving, but are happy that she'll at least be here a few days a week the next few months.

Trials. We all have them. I've learned a lot about them the past few months, and even the past few days. I think the most important thing I've learned is that no one's trials are the same, and none are harder or easier than another. They're just different. I've seen and learned some pretty hard things the past few months, and I'm grateful for mine....or I'd rather have mine than someone else's. And you can't pray them away, this is what life is all about. I wish I could take Maddox's heart issues away, but I know that we've all be blessed because of them. This is one special little boy, and I'm so grateful for him and all that comes with being his mommy.