The details

There seems to be a high interest in the details of Benjamin's surgery. So, for those of you who have the stomach for this kind of stuff, here are the details of Benjamin's surgery. (Lee Nickles, stop reading now!)

Once he's out (a process which will take about an hour), the doctor will make a zig-zag cut across the top of his head, from one ear to the other, kinda like a head band. She will the roll back the scalp, exposing the skull. Then she will give Benjamin the soft spot that he doesn't have by removing a strip of skull on the top of his head. Then she closes him up, and he goes into the PICU. The whole surgery will take three to four hours. I'll be finding out later today the details of when we need to be there, and when they will take him back.

During the surgery, he is expected to lose a lot of blood, and will probably require a blood transfusion. After the surgery, we have been told to expect a lot of swelling. The swelling will peak about 24 hours after surgery, and his eyes might swell shut. There is also the probability of bruising.

On a less depressing note, I've heard from several people that babies usually come through the recovery process very easily. We hope and pray this is the case with Benjamin.

Hospital info

I've had several people ask, so here's some info about the hospital.

Benjamin's surgery will be at Dell Children's Medical Center. Go here for direction and parking info.

If you're interested in coming up to the hospital, we would love to see you! The first 24 hours after surgery he will be in the PICU. Right now, it looks like we won't be able to have anyone but Curtis and I visit him while he's in PICU. And only one parent can be in there at a time. So, it might not be best to visit on Monday or early Tuesday. But don't worry, we have LOTS of family and friends already coming. :-)

We are hoping to leave on Thursday. We'll try to keep everyone posted through the blog on Benjamin's progress.

All that to say, we would love visitors if you can make the trip. But if you can make, plan on coming on Tuesday, Wednesday and maybe Thursday, depending on when we are leaving.

Thanks for all the love!

my prayer

"Rejoice in the Lord always; again I will say, Rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me—practice these things, and the God of peace will be with you." Phil 4:4-9

Father, I pray tonight that you would help me to rejoice. I have so much to rejoice in, you have been so good to me! You are the only source of true joy. Your gift of salvation makes me rejoice! Thank you for sending your Son.

I also pray that you would grant me the peace which surpasses all understanding. Help me to not be anxious, but to trust in you, and rejoice in the promises that you have made to me.

And finally, I pray that you would help me to meditate on you. Guard my mind from thoughts of doubt. Remind me of your love, faithfulness and help me to reflect and think on you and you attributes.

Amen.

Breathe in, breathe out.

That's what we're doing right now. Trying to just breathe in and out.

Today we had Benjamin's appointment with the neuro surgeon. Just by an examination, and some measurements, the doctor determined that Benjamin does indeed have craniosynostosis. He will be having surgery on Monday morning.

Things are going very fast right now, and we are feeling slightly overwhelmed. I will try to fill in more details when I've had more that four hours of sleep, and that's not tonight!

Thank you to everyone who was praying for us today. I've talked to several people who all have said, "You seem to be holding up pretty well." And I (we) are. But I know it's only because of all the love, prayers and support we are getting for all of you. Thank you!

Really?!?!

While reading some information for parents who are looking at the possibility of cranio surgery, I found a list of things to do. Here's one of them.

"Use prayer support through your church. Research shows that patients who are prayed for do better than their counterparts who aren't."

Really?!?! I'm shocked! (Note sarcasm).

What a blessing it is for Curtis and I to know how prayed for we are! Thank you to everyone who is waiting and praying with us.

An update

We have an appointment with the neuro surgeon! God is good! It's for next Tuesday, at 10:45. She will assess Benjamin and see where we need to go from there (as far as tests... x-rays, CTs).

We are driving straight to Austin on Monday night, rather than coming home home from our Thanksgiving time in Kansas. Our friends, the Gallaghers have graciously opened there home to us, and offered to babysit the big kids while Curtis and I take Benjamin to the doctor. Praise God for the covenant family!

Thank you for your prayers!

Psalm 71

Be my rock of refuge, to which I can always go; give the command to save me, for you are my rock and my fortress.

For you have been my hope, O Sovereign LORD, my confidence since my youth. From birth I have relied on you; you brought me forth from my mother's womb. I will ever praise you. My mouth is filled with your praise, declaring your splendor all day long.
But as for me, I will always have hope; I will praise you more and more. My mouth will tell of your righteousness, of your salvation all day long, though I know not its measure. I will come and proclaim your mighty acts, O Sovereign LORD; I will proclaim your righteousness, yours alone. Since my youth, O God, you have taught me, and to this day I declare your marvelous deeds.
Your righteousness reaches to the skies, O God, you who have done great things. Who, O God, is like you?
I will praise you with the harp for your faithfulness, O my God; I will sing praise to you with the lyre, O Holy One of Israel. My lips will shout for joy when I sing praise to you— I, whom you have redeemed. My tongue will tell of your righteous acts all day long.

This is the prayer we pray, and this is the pray we hope Benjamin will pray someday.

Psalm 71: 3, 5-6, 8, 14-17, 19, 22-24

Father, may your praise ever be on our tongues! May our children ever sing of your marvelous acts and of the mighty deeds you have done!

Praying

Heavenly Father, I come to you tonight because you are the only source of truth, life and hope. You know every details about my son, and in that, I draw my hope. Thank you for the promises that you have made to Benjamin: to prosper, not harm him; to work all things our for his good and Your glory. And I pray that is what would happen. Father, I pray that through all of this you would be given the glory. Use my son, my family, and me to bring you the honor and glory that is due to your name.

Father, I pray that your will would be accomplished in my family. Even when I don't understand, I know that no plan of yours can be thwarted, and that your will is perfect. You are good, God! I praise you for your faithfulness. I praise you that you are all knowing.

Tonight, I pray that you would be my comfort and my portion. Sustain Curtis and I as we are going down this road. Draw us closer to each other, not letting the emotions and stress of the day distract us from you. We love you, Lord! I pray that we would be you glory in the daily walk of our lives.

If it's your will, please help Benjamin to not have these problems. Help him to not require the surgery, but rather a less invasive solution. I pray that you would work mightily in his little body! And Father, if it's your will to have Benjamin undergo the surgery, I pray that you would protect him, watch over him, and keep him safe. Use these events to draw him to yourself.

Thank you for being a mediator who can sympathise with us. Thank you for making away to the Father!

Amen.

Funny

When you become a parent, you try to saturate yourself with information. After we bought a pregnancy test that came back positive, we bought pregnancy books, I scoured the Internet trying to find anything and everything I could about pregnancy and babies.

As a mom, there are things that you worry about. SIDs, your baby falling, nursing well/enough, car seat safety. Caraniosynostosis is not one of the things that I worried about.

Funny. Something I had never even heard of till a week ago is now all I can think about.

A little update

I'm so thrilled that I can actually give an update! Yay!

This morning, I decided I should call Scott and White in Temple to see how the referral process was going. Long story short, we find out (after several phone calls) that there isn't a pediatric neuro surgeon at Scott and White. We could see the regular neuro surgeon, but we really wanted a pediatric one. Curtis talked to our insurance rep, and she said just got to Texas Children's Hospital. But that ended up being a dead end too (insurance wouldn't cover it after all). Finally, we found Central Texas Neurosurgery for Children in Austin. And the great thing is that we will be getting in for our consultation this month!! Beat waiting till the end of December!

So, we have to wait just a little bit more, then we should start getting some of the answers we want and need.

More info

Just so everyone knows, this info is almost more for me, but just in case you're interested...
check this web site, which has lots of practical info.

source of encouragement

Romans 5:1-5 "Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us."

My friend Lindsey (check out her blog for the amazing story of her boys, talk about FAITH) sent me this verse. I can't think of anything that encourages me more that to know that the saints are praying for all of us, and pointing us back to our Father's Word.

Keep the verses coming everyone!

Dr. visit

Today, we had Benjamin's six month well visit. Curtis and I were very anxious to meet with our regular pediatrician to have some of our concerns addressed, and maybe get a little comfort about this whole situation.

Our doctor reassured us that even though craniosynostosis (cranio) is still a possibility, he doesn't think it's the main possibility. He told us that there were two other diagnoses he thought were more likely. One being extra fluid around the brain, which is very normal for a child Benjamin's age and wouldn't be a cause for concern. The other is that he has a preemie head, and would wear a helmet to correct his head shape.

The possibility of cranio is still there, and our pediatrician wants us to continue the process of seeing the neurosurgeon. He did tell us that since Benjamin's head is still growing, we aren't in any rush to get to the neurosurgeon. That was a huge relief! He told us what we already know, that if Benjamin does have cranio, then he will have to have surgery. He went on to tell us that it's not a fun surgery, and we really don't want to have to deal with it. But of course, if we have too, we was very reassuring that the doctor we would be using is a good one.

So we left feeling encouraged that there are other possibilities our there, ones that are much less severe. I was made a little more nervous about the possibility of surgery, since he made it sound like such an unpleasant thing (not that I was thinking it would be pleasant :-)).

Here's how we are asking you to pray:
*Benjamin wouldn't have craniosynostosis. But rather, it would be one of the other problems.
*That the whole referral process would be quick, and that we would get in to see the neurosurgeon as soon as possible.
*That Benjamin's head would continue to grow at the same rate, and no other signs of cranio would appear.
*Most of all, pray that Curtis and I would continue to wait on God's will, and in His peace.

Thank you!

Praying

Father God, I praise you for being the great Creator! You alone are God, and I praise you!

Father, I thank you for Benjamin. I thank you for how you created his inmost being, how he is made in your image, and how he is loved by you! Thank you for your faithfulness to me and my family. Thank you for your promise to be a God to me, and my children.

Tonight, I come to you with a heavy heart. But I also come to you knowing that you are good, and will always do things for your glory and our good. I pray for Benjamin. I lift him up to your throne, acknowledging that he is mine, but for the moment. As much as I love him, I know that you love him more. Thank you for you love! I pray Father, that you would work in Benjamin's little body. You created him, you know his inmost being, and you know what's wrong with him and what he needs. I pray that if it's your will that you would make all this just a mistake, and that when tests are done that they would show nothing to be wrong with Benjamin's head. But if that's not your will, I pray that you would protect and keep Benjamin. Help his to go through this whole process well and without any complications.

I love you Lord. Thank you for hearing the prayers of this mommy.

Amen.

pics

More info

This link has a great definition of Benjamin's possible diagnosis.

I'm no doctor

I'm no doctor, but I'm learning a lot. Apparently, there are several different kinds of craniosyntosis. Here's the one I *think* Benjamin might have. Notice I said think! And of course, he might just have a funny shaped head....

What is sagittal synostosis?
The sagittal suture runs from a spot at the front of the head to the back of the skulI. Fusion of the suture results in a long, narrow skull with or without bulging of both the front and back of the head. Surgery of sagittal craniosynostosis involves removing the suture and widening the skull by opening up the coronal and lambdoid sutures on both sides of the head. Sometimes bone grafts are placed to keep the out-fractured bones apart.

Source of encouragement

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies.
2 Corinthians 4:7-10