Helmet info

This is not Benjamin. :-) But this is a pretty cute kid! I've had a hard time finding a picture of the kind of helmet that Benjamin will be wearing, so when I finally found one, I had to share! Here's the web site where I got it.

Helmet and head shots

Lookin' good, isn't he? We're very impressed with how nice and round the back of his head is. Now, it's time to work on the front! Here's the info on the helmet.

On the 21st, we went in for Benjamin's helmet scanning. It was so easy! Bud, the orthotist, put on this stocking cap, cut our his face and ears, and used a scanner like you would see at a store, and scanned his head. He "swept" the sides, front, back and top and POOF there was a 3D image of Benjamin's head. Bud will send the image to the helmet place, and we'll pick up the helmet on the 3rd.

Benjamin sporting his stocking cap. Doesn't he look adorable?

Seeing is Believing

When people see Benjamin, I hear a lot, "It's just so good to see him!" or "I knew he was doing well, but can I hold him, just so I know for sure?" or "Can I hug him?"

While we were at my in-laws' church, I heard this a lot. I heard this a lot because everyone there was praying for us. There are times when I hear that someone is praying for Benjamin, but I KNEW these people were praying for us. And it was such a blessing! It was such a blessing to have the pastor point Benjamin out during announcements, and praise God with us for how well Benjamin is doing. It was a blessing to have people want to hold him because they felt connected to him, and wanted to hug him. So a huge thank you to everyone at Central Christian Church in Wichita Falls. Thank you for loving us, praying for us, and praising God with us!

Back to Austin

For our first helmet appointment! We'll be leaving here at noon on Friday, our appointment is at 2:30, and will take about an hour to an hour and a half. Once we're done, we'll hit the road and head to Wichita Falls to see Curtis' family.

This morning Curtis and I were talking about how it would be perfect to have our appointment on Friday afternoon, since he only has to work a half day and we could just get on the road. Once again God is showing us his great grace!

Another exciting fact that we just discovered is that Benjamin won't have to have a head molding. There's new technology that allows the doctor to just do a scan of his head along with a few measurements. Not that I was dreading the molding process, I'm just thankful it will be a little easier.

From what I've heard, we will be getting the helmet about two weeks after our initial appointment, which works out perfectly with our holiday traveling. We really couldn't have planned things even better, which just goes to show that it really isn't our plans to begin with.

God is so good!

ready for Christmas

Taking a break from thinking about the whole head thing, and just enjoying my sweet baby boy's first Christmas.

Or at least trying to.

Numbers game

Here are a few numbers from that past few weeks.

3 trips to Austin
3 hours of sleep the night before surgery
185 hits to our blog the day of surgery
131 visitors to our blog the day of surgery
10 different countries represented in our visitors
7 friends and family members waiting with us during surgery
4 1/2 hours from the time we left Benjamin till we talked to the doctor
3 IVs
4 monitors
1 drain for his head
80 stitches
2 1/2 lbs gained from swelling
countless prayer!

In the strangest places

During the whole process of Benjamin's surgery and now recovery and as we look to the next phase (helmet) I have found encouragement in different places... songs, random strangers, friends of friends. I've also found encouragement in some not unusual place...scripture, God's people, family and friends.

While we were driving to Austin for the surgery, there were many emotions running though my heart and mind. We had just left our oldest two, and even though were very comfortable with the care they were being left with, it was still hard. We were on our way to a town we hadn't spent much time in, where we didn't have family, our church, and we were going to be putting our son through major surgery. One minute I would be fine, the next moment I would be crying. I was overwhelmed, to say the least. I heard this song, and the part I've bolded really touched me.


Breath Of Heaven

I have traveled many moonless nights,
Cold and weary with a babe inside,
And I wonder what I’ve done.
Holy father you have come,
And chosen me now to carry your son.

I am waiting in a silent prayer.
I am frightened by the load I bear.
In a world as cold as stone,
Must I walk this path alone?
Be with me now.
Be with me now.

Breath of heaven,
Hold me together,
Be forever near me,
Breath of heaven.
Breath of heaven,
Lighten my darkness,
Pour over me your holiness,
For you are holy.
Breath of heaven.

Do you wonder as you watch my face,
If a wiser one should have had my place,
But I offer all I am
For the mercy of your plan.
Help me be strong.
Help me be.
Help me.

Breath of heaven,
Hold me together,
Be forever near me,
Breath of heaven.
Breath of heaven,
Lighten my darkness,
Pour over me your holiness,
For you are holy.
Breath of heaven.

As many of you know, or can assume from the words, this is a song sung by Mary. Now, I'm not trying to compare the thoughts and emotions that Mary must have gone through as she carried and gave birth to Jesus to the emotions that I was feeling. But I can relate to the emotion that this song portrays.

The lines, "Hold me together" became a prayer of mine during Benjamin's surgery and the days in the hospital. God was so gracious! As I look back, and relive some of those emotions, I don't know how I did it. How did I not completely lose it as I watched my son lay in an ICU bed with seven wires coming out of his little body? How did I keep any kind of calm while I watched him go through pain before his next dose of morphine? Because God was answering my prayers, holding me together, and being forever near me.

Praise God for his comfort, for his love, and for answering the prayers of his people!

Helmet Time!

It was back to Austin for Curtis, Benjamin and I today. He had his one week post of appointment. Everything looked GREAT! The doctor was very pleased with all the progress Benjamin's made. She did however, want to put Benjamin in a helmet to help his head shape the correct way. So, that's the next step in this journey. we'll be jumping through more insurance hoops. :-)

Praying for Joshua and Elijah

I received this post a few days ago, and I was truly touched by this father's heart and prayer. I had noticed that we had a visitor from Australia, and it was so neat to have him post. Please keep this family in your prayers, as you continue to also pray for Benjamin.

G'day. My son Joshua(4) was born with Sagital Craniosynostosis.He had his first operation @ 3 months, 2nd @ 12 months, 3rd @ 18 months and last at 2yrs 2months. My wife and I just had our 3rd, Elijah(6 weeks) and it appears he may also have cranio synostosis.We also have a butiful daughter Amanda who is 6. Can you please pray for them both as Joshua's titanium plate in his head appears to be bending under the skin and he has a screw loose(no pun intended)and the Doctors don' want to repair it and Elijah's back seutuers have started to overlap. I know God can intervene and repair or even heal both yours and our boys. I believe that the more prayer He hears,(in Jesus name) the greater the chance of healing. I Love God with all of my heart and I can tell from this Blog that you do to. Even though you are on the other side of the Pacific Ocean we can pray together for our beautiful boys and our families.May God bless you and guide you forever. With love in Christ Jesus. Amen.

My funny head

Looks normal, and cute.
A bird's eye view. We can tell a HUGE different in the back of his head.
A side view. Lookin' good! We are amazed at how well the incision looks.
We've begun noticing that Benjamin's head is a little lumpy in a few place. It's amazing to see how much his head has changed in just a week! If you look at the top part of his head, towards the front, it looks like there's a big bump (you can see it in the picture above this one). Actually, it's where his skull starts again! There's a dip where the skull had been removed. Crazy!

We continue to be amazed and so thankful at how well Benjamin is doing. I praise God for all he has done for Benjamin!

Six Days after Surgery

The issue of swelling was one that I was very worried about. We were told that the swelling could get so bad that his eyes would swell shut. It never got that bad, and we are very thankful for that! Here's a kind of progression of Benjamin's head. Tomorrow, which will be one week since surgery, I'm hoping to post some before and after pictures. We'll also get to remove all the bandages, and give him his first hair washing since surgery!

Night before surgery.
A few hours after surgery, in the PICU.
Tuesday morning, almost 24 hours after surgery. Notice the left side of his face is more swollen. He slept with his head tilted to the left and the swelling "migrated".
Getting ready to leave the PICU, just over 24 hours after surgery. This is about when his swelling peaked.
Wednesday afternoon, over 48 hours after surgery.
This morning, six days after surgery.

Benjamin is doing great! I am amazed at how gracious God has been to him, and to us. I'm not surprised, just amazed. How undeserving we are of all that he has given us, and how good He is!

Here are a couple answers to some FAQ.

We go back to the doctor on Wednesday. At that point, the neuro surgeon will determine if a helmet is needed. Before we left the hospital, she said that she is so pleased with the progress his little head is already making that we might not even need to do a helmet. That would just be the icing on the cake!

If Benjamin does need a helmet, she will write a prescription, and we will take it from there. We don't even know where we will be going for the whole helmet fitting. It might be back to Austin, or it might be in Houston. I don't think we'll be able to stay here. We'll have to wait and see where our insurance sends us. It's so comforting to know that we can trust in God, and know that he will lead us just where we need to be.

Tomorrow, when I wash his hair, his stitches will just come out. They are absorbable, and will have absorbed as much as they need to. So you may get your first peak at his scar tomorrow!

Even though Benjamin's doing better than we could have imagined, we are keeping him out of any nursery type environment. It's easy for me to forget that he had major surgery and a blood transfusion, since he's doing so well. So please don't take offense if you come to visit and I ask you to wash your hands. I really don't think you're dirty! :-)

Things at home seem to be going as smoothly as expected. The older kids are being very loving to Benjamin! Elizabeth is retesting every boundary at the moment, so we are praying for more grace and patience to show to her.

Again, thank you all so much for your prayers! I can't tell you how many times this past week I stopped and thought to myself, "Why am I not freaking out yet?" Only by your prayers, and the grace of God!

Going home pictures

Home!

Wanted to let everyone know that we got home last night! Yay!! We got in about 10pm, got some good sleep, and are ready to get back to normal.

A couple things you could be praying for:
Benjamin's continued recovery.
Gentleness for Elizabeth and Micah.
Smooth transitions for all five of us.
Rest.

Our day (so far)

Today has been a very busy one. We had another good night with Benjmain and I got sleep! All the nurses are saying "Later today, when you go home....." Yay! Things are looking really good for us to be out of hear this evening. Of course it will all depend on what the doctore says today.

This morning I got a lesson in incision care. Yuck! But, I managed. We'll have tot clean and redress his incursion every day, twice a day for another week. The worst part is when we take off the tape, which is somewhat in Benjamin's hair, and he screams.

After Incision Care 101, it was bath time! Sponge bath, that is.

"I'm not so sure about this, Mommy!"
"Being clean feels good!"
"Yummy towel!"

After his bath, we got him dressed in some snuggy clothes from Grandma, and went to the cafeteria. He was quite the hit! Everyone talked to him, smiled at him, and was very sweet as we maneuvered his wagon around the halls and elevator.

"Since Mommy and Daddy forgot my pacy, I guess I'll use this thumb!"

Wireless!

Today has been a busy, but very good day. Here's a little recap. Benjamin woke up this morning after an okay night. He was up at 5 am, happy talking, smiling, and pretty swollen. He had laid on his left side, so you can see in the picture, the left side of his face is a little more puffy. We think he looks more like Micah now!
I stayed in the PICU with Benjamin, while Curtis went to the Ronald McDonald house. He came back at 6 am, at which point my Dad came to take me to get cleaned up. As a bonus, I got to have some nice time with him and a yummy breakfast. When we got back to the PICU, Benjamin was sleeping, but woke up very happy. In the picture above, he was talking at the camera.
Papaw and Memaw came for a visit before heading back home. At this point, we were still in PICU. Not too long after they came, we were able to move to a regular room! Yay!! Before we left the PICU, they took out his arterial line.
Once we were in our regular room, Benjamin lost two more wires when they took out the IVs and we took off the monitors. They left the IV port, just in case he might need it later (one in his hand, one in his foot). He also still had the blood ox monitor on his toe, and the drain in his head.
Now that he was a little more wireless, we all enjoyed some time holding him, and loving on him. Grandma was very smart, and put a sock on Benjamin's foot which allowed one less wire to be dragging around.
Our best friends the Findleys made the trip here to see us. What a treat it was to see them, and have their love and support. Mom stayed with Benjamin while we went to the cafeteria for lunch. A nice treat!
Once we got back from lunch, things got a little exciting. I started to nurse Benjamin, only to have Michael point out that there was blood on my shirt. Of course I immediately thought it was from the drain in his head, and I kinda freaked out a little. But, somehow, Benjamin had pulled out the IV port in his hand, even though he had a sock taped on. By the time we got his cleaned up, I was a mess. I handed him to Curtis, and Benjamin quickly threw up on Curtis. Special! After all the excitement, he was ready for a nap, so we put him in some comfy clothes, got a wagon, and Daddy took him on a ride while Mommy and Grandma got a change of clothes.
What a sweet boy! He was quite happy this afternoon. I think it was because of all the good loving that he got from our friends and family in the morning.
More smiles!
Grandma ran to get some dinner for Curtis and I. She came back with dinner AND some toys AND some clothes that will work with his tender head and IV port in his foot. The Findleys also brought him a toy. He had fun playing in his crib this evening.

Finally, after much waiting, our doctor came to check on him. She took out the drain, and gave the okay to take off the blood ox monitor on his toe. He's now wireless. She then removed the dressing, and we got our first peak at his incision. It wasn't bad! Poor Benjamin cried and cried, mostly because the hair that was left was being pulled.

Then came the best part of the day. Our doctor told us that if Benjamin has another day like today, she might let him got home TOMORROW! So pray that we would all have a good night, and that Benjamin would have a good day tomorrow so that we can head home.

Thanksgiving

"You will keep in perfect peace

him whose mind is steadfast,

because he trusts in you.
Trust in the LORD forever,

for the LORD, the LORD, is the Rock eternal."

Isaiah 26:3 and 4

Father God, you are the perfect peace! You are faithful, and I praise you for your faithfulness to our family. God, you have been so good to us! You grace has been more immense than I could have imagined. Even during the hardest part of my day, you were there giving me the peace you promised.

Father, I thank you for the gift of prayer, and for Christ our mediator. Even when my heart didn't know how to pray, even when there were no words, you heard the cries of my heart. I praise you for your love! And I thank you for the prayers of your church. May all the prayers offered to you on our behalf bring you ultimate glory.

My heart is full of thanksgiving! Thank you for graciously bringing Benjamin through his surgery. Thank you for attending to our every need. Thank you surrounding us with family. Thank you for our friends, who support and encourage us. Thank you for your church universal, for all the saints who were praying for our family. Father, you are good! Your steadfast loves endures forever!

"I will extol the LORD at all times;

his praise will always be on my lips.
My soul will boast in the LORD;

let the afflicted hear and rejoice.
Glorify the LORD with me;

let us exalt his name together.
I sought the LORD, and he answered me;

he delivered me from all my fears.
Those who look to him are radiant;

their faces are never covered with shame.
This poor man called, and the LORD heard him;

he saved him out of all his troubles.
The angel of the LORD encamps around those who fear him,

and he delivers them.
Taste and see that the LORD is good;

blessed is the man who takes refuge in him.
Fear the LORD, you his saints,

for those who fear him lack nothing.
The lions may grow weak and hungry,

but those who seek the LORD lack no good thing.

The eyes of the LORD are on the righteous

and his ears are attentive to their cry;
the face of the LORD is against those who do evil,

to cut off the memory of them from the earth.
The righteous cry out, and the LORD hears them;

he delivers them from all their troubles.
The LORD is close to the brokenhearted

and saves those who are crushed in spirit.

A righteous man may have many troubles,

but the LORD delivers him from them all;
he protects all his bones,

not one of them will be broken.
The LORD redeems his servants;

no one will be condemned who takes refuge in him.

Psalm 34: 1-9 15-20, 22

Good night

After my last post, we had a ton of wonderful visitors! Our pastors came up to visit. Past Jon had been here all day, and Pastor Wade drove from the Dallas area to be here. What a blessing! Then it was time for the grandparents to come and say good night. And thank you Northern Krajcas for the great picture frame! So sweet!

During our time with all our visitors, I was able to hold Benjamin. Yay! Then Curtis got a turn, but Benjamin wanted Mommy, or rather, Benjamin wanted to eat! So I was able to feed him. After we got him and all his cords (he has an arterial IV, two regular IVs, the drain in his head, and two different monitors) in bed he was sweet and even made a few little smiles for us.

So, enjoy the smile! Good night from the PICU!

Our day in pictures

Okay, this was actually taken last night at the Ronald McDonald House. Poor guy didn't know what he was in for.
This picture is for Michael and Charles A, we may not have gotten Big Macs, but we could get McDonald cookies!
Daddy and Benjamin in the waiting room.
Mommy and Benjamin in the waiting room.
Grandma and Grand-Daddy with Benjamin in PICU. (We didn't get a picture of Papaw and Memaw, but they were they, and we'll get pictures of them tomorrow!)
All hooked up. Notice the pacy!
Daddy time.
Mommy time.

Resting well.

Mommy's Update

THANK YOU! Your prayers have been felt, and God has been so gracious to us! We praise him for His love and grace that he has bestowed on our family.

I am currently sitting in Benjamin's PICU room. God answered some very specific prayers, and we can have three people in the room at a time. Originally, I was told it would only be one person at a time.

Right now Benjamin is resting. He is still very sleepy from the surgery, as well as the morphine they are giving him to control the pain. Overall, he's done beautifully! There have been a couple times, right when it's time for more morphine, that he gets upset, cries, his blood pressure goes up, as well as his heart rate. But for most of the afternoon, he's been resting well.

Right after he woke up in recovery, I was able to go back and hold him, and try to nurse. He's been too sleepy to eat, but it made this Mommy's week to get to hold him. I was alone when I saw him for the first time, but he looks GREAT! The peace that I felt at that moment was unreal. Truly, and answer to prayers.

Thank you again for all your prayers! Please keep them coming as we walk through the rest of the recover process. We will be in the PICU till sometime tomorrow, as long as Benjamin is doing well. Then it will be a few days in the regular recovery room. He's doing great, and we pray that it will continue.

Praise God for His Blessings

Greetings to all our dear friends...this is Kierstyn's dad, Marlon reporting.

The doctors informed us about 12:45pm that the surgery was complete and Benjamin was in recovery. Everything went well and as the doctors had planned. Shortly after 1:0pm, Kierstyn was called back so that she could see and nurse Benjamin...something that I think they both were looking forward to!

While we are thankful for the skills of the doctors, staff and everyone who has tended to Benjamin through this process, we are first thankful to God for his grace and mercies that sustain us daily as well in instances of our specific need. Secondly, for all the saints who interceded on behalf of Benjamin with us and friends and family around the world. This has reminded us afresh of the many blessings of family and the Church.

Thank you for your love and support.

For all of us,
Dad

In Austin!

We have made it to Austin! Even though our afternoon was a busy one, we accomplished everything we needed to, left the kids in good spirits and in loving care. Here's how you can pray for us.

Peace during the surgery tomorrow.

Safety for Benjamin during the surgery.

Protection from infection or other complications.

Obedience for Elizabeth and Micah.

That in everything we do, Curtis and I would bring honor and glory to our Savior.

We'll keep you posted!

The plan

"Many are the plans in a man's heart, but it is the LORD's purpose that prevails." Prov. 19:21

Here are our plans for the next few days. Please pray that in all things, even are plans, we would honor and glorify God.

Benjamin, Curtis and I will be leaving for Austin tomorrow evening, about the same time the kids will be going to Covenant Kids at church. My Aunt will be coming into town to take care of the big kids for the first couple of days. Curtis' Dad and his wife are going straight to Austin tomorrow afternoon, and we will meet up with them there. My Dad is with us now, helping us work through all the final details. My Mom will be coming in at some point tomorrow, though we're not sure if she will come here, or to Austin. Curtis and I are hoping to stay at the Ronald McDonald house for our time in Austin, but won't know for sure if that's going to work tomorrow morning.

Monday morning we have to be at the hospital at 6:30. The surgery starts at 8:00. we're not sure if that means they are going to take Benjamin back at 8, or if the actual surgery starts at 8 so they'll take him sooner.

The surgery will last between three and four hours. Our parents will be at the hospital with us, as will our pastors, and some wonderful friends who live not too far from Austin.

After the surgery, Benjamin will be in the PICU for 24 hours, most for observation. If he is eating well and doesn't spike a temp, we will be moved to a regular room in the surgery recovery wing on Tuesday. Tuesday is also the day our parents will be heading home, provided all is going well. My Mom will be heading here to relieve my Aunt of kid duty. And she is staying with us indefinitely after we get home.

We are anticipating coming home on Thursday.

As far as long term plans, we really don't' have any. At this point, we're totally focused on making it through the next few days. We know that we will be in Austin more for follow up appointments, but we don't know when or how often. We know that he will be put in a helmet to train his head how to grow correctly. But we don't know when and where all that will happen, or how long he will be in it.

Please continue to keep us in your prayers. Every day when I wake up, I know we're one day closer to Benjamin's surgery. Every day the reality of the situation becomes more real, and I become more nervous. Praise God for His peace! Praise God for the prayers of his people!