Wednesday, October 21, 2015

Appointments overview {rather long!}

Our pediatrician recommended, right away, a neurosurgeon in Fort Worth.  The doctor used to be here {in OKC}, but moved to Texas about ten years ago.  Since our doctor had not seen a case of craniosynostosis in roughly seven years, that was simply who he knew to refer to. After making the appointment and some strong encouragement from friends, we found some connections and reached out to a neurosurgeon here, too.

Both doctors were way backed up and originally gave us appointments in late October.  This seemed so far away to us and we asked to be put on waiting lists.  I suppose the ladies I talked with could hear the urgency I was feeling and were so kind and very helpful.  And by the grace of God, both of the ladies I talked with about making appointments called back the same day and got us appointments within ten {10!} days.  Humbled again by God's kindness and faithfulness in all of this.

Our first appointment was with the doctor here at OU Children's, Dr. Yaun.  It was, I suppose, really our "second opinion".  Patrick was able to meet me there and she was so kind and so thoughtful.  She had Caleb lay down and looked him over.  She checked his eyes and obviously looked at his head.  She told us that based on his head shape that he had a saggital suture fused and that the radiology report just couldn't be accurate. {whew.}  She said he looked so good otherwise. {whew. again.}

She had us sit down and drew a picture of what was going on with his skull and then showed us how the surgery would go -- where the cuts would be and such.  We knew there were a few options and the one she did was more invasive, would most likely require a blood transfusion and a longer hospital stay.  However, Caleb wouldn't need a helmet because the surgery would be immediately effective.

At one point, she looked over at me and said, "I know this is scary.  Anytime a baby needs surgery, it's scary.  Especially when it's on the head. But of all of the things he could have, this is the best one.  It's treatable."  I so appreciated her thoughtfulness of me -- his momma -- in the midst of all the chaos and questions and words.  She spoke to my hurting heart and reassured me that it was going to be okay.

Two days later, we drove down to Fort Worth to meet with the other doctor.  It's a 3 1/2 hour drive, so we needed an early start to get through traffic and construction plus a nursing baby.  We got to FW a little early, but just went to Cook Children's hospital and hoped to get in a little before our appointment time. The facility is incredible! Andrew and Elise LOVED playing in the waiting room and I was able to nurse Caleb while we waited.  It didn't take them long at all to call us back and the room had a TV with Disney on -- Andrew was delighted.  In fact, I'm not sure he made eye contact with the doctor or even knew he was in the room. Ha!

Dr. Honeycutt came into the room after looking over the x-ray and CT scan discs. He did not show us any of the scan results, but he confirmed what we knew and showed us this little mold of an infant head that allowed us to see what Caleb's skull looked like.  He went over the surgery he would recommend, an endoscopic surgery with two small incision lines and a helmet for recovery. He then told us he would do that surgery in about two weeks! {Say what?}

We asked some of the same questions to gauge his perspective of Caleb's situtation and his answers were very similar to Dr. Yaun.  He was friendly and kind, but was quick to the chase and didn't have the same warmth and bedside manner at Dr. Yaun.  He didn't even examine Caleb. So there's that.

We found out that with the endoscopic surgery, it's a 50/50 deal.  Half surgery, half a good helmet.  This means he only uses a helmet company in Fort Worth and we would need to drive down once a week after surgery for fittings -- for 6-8 weeks.  Then twice a month, once a month until Caleb didn't need a helmet any more.  He also said, basically, that if we didn't mind the more invasive surgery it could easily be done here or there.

We prayer fervently before these appointments for wisdom and unity between Patrick and myself.  And after leaving Dr. Honeycutt's office -- I feel like those prayers just blanketed us and we knew.  There was no question that we wouldn't stay in OKC.  There were pros and cons to each procedure and it was overwhelming enough to consider what we would choose for Caleb, but thinking about leaving Benjamin, Andrew and Elise and not being close to home felt even more heavy.

To make the decision even easier, Dr. Yaun called us as we were driving home from Fort Worth.  She "just wanted to share the CT scan results" with us.  It was so nice to know that she took him out of her day to call us and explain what she saw! And as a bonus: the scan confirmed that there was only ONE suture closed, not two and a half!!! {whether it was a bad x-ray or a Healing touch from the Lord, we will never know...}

As I was talking with her, I shared that we wanted her to do the surgery.  She was kind and said she was happy to help us and walk with us.  I asked for a tentative schedule and she said, "Well, he will be three months on November 13th.  So we could do November 19th or December 3rd.  Whichever works best for you all." Oh wow, okay.  Nothing like having a date set! She told me that she would be on vacation, but that she would leave a note for her nurse to make sure there was room on whichever date we chose.  And before we got off the phone she made sure to tell me that it was a pleasure meeting us and she looked forward to helping Caleb. {bless it.}

After discussion and talking with some family about coming down, we decided on November 19th.  A day we will never forget, for sure! The day after my birthday and the day before our anniversary.  This week will be a week to celebrate in years to come for so many reasons! :)

We covet your prayers and trust that God is already moving and using this for His glory!

Here's how you can pray:
*For no long term developmental delays.
*For a easy and successful surgery.
*For an easy blood transfusion, or even no need for one!
*For a quick and smooth recovery -- and for a shorter hospital stay {opposed to being there more than four days!}
*For Caleb to continue being resilient and brave.
*For Benjamin, Andrew and Elise to have hearts to love and minds to understand as best as they can as we walk through the next few months.
*For Patrick and I as we make decisions -- wisdom, deep unity, love than will meet all needs, peace and for strength.

Here's how you can praise God:
*There's only ONE suture that is fused.
*Caleb has been such a champ and is doing so great despite everything.
*We have seen such love and kindness from so many people = people are providing and caring for us so tangibly and through prayer and encouragement!
*We were able to get into appointments quickly and schedule a surgery date that was best for our family.
*We have family that quickly, gladly and willingly made arrangements to come and help us!
*We have friends setting up meals, extra hands, medical advice and so much more before, during and after surgery! Wow!!!
*God has been so faithful through all of this.  He has been our rest, strength and peace.  Praise Him for being so real to us right now!

I'll keep you updated as things get closer and as we move forward.

Sunday, October 18, 2015

Motherhood is a sacrifice...

Never in my life have I felt as spent and overwhelmed as I do right now.  Three kids was our hardest adjustment, but four kids has challenged the deepest love of self I cling to and has caused me to throw my hands up.

Just imagine me waving a white flag.  And drinking a lot of coffee.
Left hand, coffee. Right hand, flag of surrender.
And prayer.  I can.not stop praying for my children.

But this surrender isn't just because there are a lot of small people in my home and under my care.  This surrender started way before I ever held my sweet Benjamin.  Because whether we recognize it or not -- deciding to have a child is the beginning of {so, so slowly} letting go of self love.

When I saw Benjamin for the first time, my heart melted and I gave up some of me.  His first year was H.A.R.D because, well, I couldn't wrap my mind around simply putting his needs first all the time.  Andrew came and I melted again and gave up more of myself.  Two small people is hard work! And then you realize that it's okay to love your people so much that you do more for them and less for you.

By the time we wrestled through so many rounds of Clomid, being pregnant with Elise was a gift after months of struggle and surrender. When I saw her, I melted and gave up more of myself.  This time night time feedings weren't awful, I enjoyed them.  Day time snuggles were not hard to hold on to. But three babies is a lot of babies.  Going from two hands, two children to THREE children and having no idea how to manage and survive, that's tricky.  It threw me for a loop.

Here I am with Caleb.  This sweet little miracle that has seen me through a very trying year of sanctification.  I went through so many emotions when I found out we were pregnant again.  And I was so upset to "lose myself", to "give up my body" again. I worked through things slowly as we approached his arrival.  Then he came out and was in my arms and the world could have stopped and I wouldn't have known.  He was this treasure that I just could never have imagined would be ours. I melted again.  But this time I just couldn't think about myself.  {I mean, I do and I am mindful to be alone and take naps and go for a run.} There, in my arms, was this tiny baby that needed me.  And running around my feet were three other children who needed me. And I have a husband who needs me.  This is my life, my calling.

Night time feedings are part of tiny babies and end so quickly, so I treasure that time to quietly pray and feed my baby.  Day time snuggles are never a burden and allow me to rest and give attention to the other children by reading or talking.  It's just that everything goes by so fast -- if I don't surrender now, I'll regret not giving up more of myself to know these small people that have been entrusted to me!

Little did I know, though, the surrender I would walk through over the next several weeks.  It's funny how the Lord kindly and tenderly prepares you for things.

As we found out about Caleb's craniosynostosis, I was brought abruptly to the realization of ideals and expectations I didn't know I had.  My so-called "American dream life", if you will.  In the span of two weeks my baby had a birth defect and needed skull surgery, my toddler threw tantrums every day and exerted her strong willed nature so forcefully I was brought to tears, my four year old wasn't doing well in preK and we had to move him back to preschool, and my six year old was struggling in first grade, with things we thought he knew.

Humbled. To the max.
My little dreams of a perfect family were brought to the light and I'm here to tell you this: perfection is fake and always, always a very awful place to dwell.
So I wave my white flag.  Not because of tiny babies.  But because we have no hope in perfection.  It's a false security. *waving white flag*

Little by little, I have had to "give up myself"...
   ---I cancelled my Y membership because I can't use it right now, or for the next three months.  And that costs money that we could be putting somewhere better in our budget. The one thing that was mine, that kept me mentally sane. But you know what happened, after I cried, I saw sin.  My hope and mental sanity isn't in working out, although it is nice to have!, it's in Christ.  He's my anchor.
   ---I committed to donating blood for Caleb's blood transfusion.  I realize that's really not a big deal, but I truly hate needles and being stuck with them.  And usually I don't handle a lot of blood being taken from my body well. But the Lord, He sustains me.
   ---I realized that there are days that I simply cannot make it to school to pick up my child on time.  I've had to call friends to help.  It's more wise to let the small people sleep, or to take care of a nursing baby than to be the mom always on time, with a snack in hand, to pick up my child at the sacrifice of my other children.  But God has provided so many friends that go to the same school and I can easily call upon them for extra hands.
   ---I realized that I simply cannot handle all of my children at important doctors appointments.  So I have to call and ask friends to watch Andrew and Elise {and sometimes just Elise}.  I can't mentally handle asking questions and holding a conversation while keeping three children calm and still.  And that's okay.  They are children.  And I'm not supermom. But God has provided the sweetest friends who are like family to us that love my children and care for them so well.
   ---We have gotten so many meals.  Like, more than we deserved. I'm usually the one to offer meals, but this time we have taken over and over. And it was the most helpful thing ever.  The week of all of Caleb's appointments, I cooked twice! People just kept calling with meals to drop off.  And I cried at the way God met those needs.  We needed to eat, and I didn't have the ability to function well enough to plan dinner.

Over the last few weeks I have noticed this: whether in good times or bad times, the most beautiful reflection of motherhood is being deep in the trenches -- spending and being spent -- for the souls and lives of your children.  There are some seasons full of tears and sacrifice.  There are some seasons of laughter and joy.  But every season should be covered in pleading prayers and daily surrender - of your children and yourself.

"I will most gladly spend AND be spent for your souls..." 2 Corinthians 12:15 {emphasis mine}

Now more than ever I know that my children are not mine.  They are incredible gifts from the Lord and they are His.  He chose me to love them and care for them and guide them -- but they are His and He created them just as they should be.  They are His creation, my earthly treasures.

Right now, friends, I'm spending and being spent in ways that I never knew were possible.  Perhaps that I never knew I could be. Surrendering myself so that I can most gladly and fully care for my children. But I will do it most gladly so that my children see Jesus, feel loved and know hope in Christ.  And I do it whole heartedly so that God may be glorified in my sacrifice of motherhood.

Sunday, October 11, 2015

Family pictures -- September 2015

I really wanted to get family pictures done before Caleb's surgery.  It was a last minute search to get something done very soon.  I wanted to remember his tiny head without a scar because for the rest of his days, there will be a big scar on his head -- whether you can see it or not!

A sweet, dear friend of mine takes pictures and offered to take some of us real quick on a Sunday evening.  She knew how important it was to me to have this memory and extended such kindness to our family. What a treasure she is.  Ashley {my photographer friend!} worked so well with what we had to offer -- four kids with differing personalities, right before dinner.  She just had her third baby, so kids are not foreign to her!

I am beyond grateful for these pictures.  They mean so much to me!

Benjamin, 6/Andrew, 4/Elise, 2/Caleb 7 weeks

Look at Caleb!


Elise's life is so sad and hard... ;)

Kisses! {and an unfortunate way of standing that still makes me look pregnant!}

Personalities, captured.
Daddy's girl.

Tiny smiles!

A quick shot of his fused saggital suture.

P.S. I love you forever and will give you a thousand kisses.

Saturday, October 10, 2015

Scans and pictures.

One week after going to the doctor, we had an X-ray.  I was completely unprepared for the emotional struggle it would be to take my baby into that room and hand him over.  It was a beginning of sorts. The beginning of something so much bigger than I can understand or control.  The beginning of something I never wanted to endure.

It didn't take long to get the pictures.  They had little things of foam to hold Caleb in place and laid a lead vest over him.  I "suited up" and stood near for the last two pictures.  He was getting a little fussy and my nearness seemed to help.

I had just a few tears as I watched them try to position his tiny body on such a big table.  The techs were so quick, so kind and they let me look at the x-rays on the computer before we left.  I wasn't sure what I was looking for or at, but I knew that my tiny baby's head was not how it "should" be.

 We got the radiology report that same day and I was so grateful.  Until I read the report.  The radiologist stated that Caleb had two sutures fused and one almost all the way fused.  There are four sutures in your head.  My eyes were wide, my mouth was open and tears overflowed. "no, NO!" I kept saying.  How is that possible?! He has no other signs that would lead us to believe that all of those sutures were closed! I prayed. A lot.  I asked a lot of people to pray.  I was so overwhelmed.  And at this point, I started hyper-analyzing every little thing that Caleb did.

I was sure that he didn't social smile at me because there was a delay.  I was confident he was in pain because he would sleep all the time.  I just knew that there was pressure.  One eye opened a little more than the other, so of course there was a coronal fusion. Any high pitched cry made me think that he couldn't be comfortable.  Finally I had to surrender, again, that this was out of my control and beyond what I could grasp.  This was something I could not handle and something I could not let consume me.  So I prayed more and pleaded for sufficient grace and to love my baby well.  And I prayed for a deep trust in the only One who could heal Caleb and help him.

After our first consultation with a neurosurgeon, we had a CT scan.  The doctor was actually super awesome and got us in the day after our appointment! I've never had or been apart of a CT scan before, so it was somewhat shocking to see such a large machine.

I fed Caleb in the waiting room a few times so he would be nice and full and ready to rest.  We were called back and She had me lay Caleb on the "bed" of the machine.  I swaddled him and kissed him.  Then we moved him so his head was in the cradle.  She had to put rolled up blankets around his head so it would stay.  Then she laid two lead blankets on top of him. I had to stand back for a minute while she did what she needed to do.  And at that point warm and helpless tears came down my cheeks. She gave me a lead coat to wear and I stood by Caleb's side, rubbing his leg and talking to him.

He was, surprisingly, wide awake but so content and calm.  He looked at me and I told him that I loved him so much and that he was the bravest baby I knew. I smiled and held back tears.  He had his paci in to keep him from moving his legs, but he calmed down really well and the tech was able to get a super scan! It took about three minutes, but we were in the room for about 10 minutes.

We packed up and moved back to the waiting room to wait for the disk of the scan.  I promise you that I did not let go of my sweet baby for even a second.  I held him and snuggled him close.  He fell asleep on me and I prayed for peace and grace and for everything to be done soon.

There are no words that could fully describe the helpless feeling that washes over you, as a mother, when there is simply nothing that can be done on my part to "fix" my baby.  It's a humbling thing to be at the mercy of the Hand of God and know that in all things -- that's truly where I should rest.

Here are some pictures of Caleb's head.  You can see that it's not round, but points out in the back where his growing brain is pushing his skull to make room. I'm pointing the the ridge on the top of his head where his saggital suture has fused together. I wanted to take a lot of pictures so I would remember and so we could compare after surgery.

Friday, October 9, 2015

Car conversations.

Our school is having their fall break right now. And let me be honest: this morning was awful! Sometimes I wonder how we survive each other.  At one point the boys were in their beds with the demand to be silent, Elise was put into her crib because she wouldn't stop screaming and crying and Caleb was on the couch crying because he wanted to be held and fed. How do I even start handling all of that?

I walked away.  I grabbed Caleb and moved him to my bed.  I prayed. And took a few deep breaths.

I apologized to the boys.  I let them speak their minds. I shared with them their disobedience and the reason I was upset. I asked them to apologize.  We were fine. I went to Elise and held her. I talked to her and let her know I loved her. And then I fed my baby. Oh my goodness, four kids can be hard and overwhelming somedays.

But I remember that everyday isn't like this.  Most of our day, even though full of chaos, are good.  They are hard and sad, fun and silly, go with the flow days.  In these hard times I'm grateful to remember that all days are not this difficult.

Also, I texted Patrick and he kindly said, "Let's meet at the mall for lunch."

Yes, yes and yes. I love him.

On the way home we were chatting and being sweet.  Clearly, we all just needed to leave the house and see daddy!  The boys started picking on one another about who they were going to marry.  This is a new thing and actually pretty funny.  Andrew is in a "I don't like girls" phase, so he is very offended when it's suggested he will get married.  Unless it's a day he does like girls, then he just laughs.

Something was said about Benjamin not being able to marry someone because they were younger.  I shared with them that I was almost 3 years younger than Patrick -- and they were shocked! Ha! And then a series of questions began about how old they were when I was in third grade.  I had to explain they weren't alive yet.  And here is part of our conversation:

B: Were we with Jesus before we were born?
A: I was with Jesus before I was born!
Me: You were with Jesus? Was He nice? Did He take care of you?
A: Yes! Jesus was nice to me. And He hugged me.  And the soldiers were nice, too. They didn't kill me or anything.
Me: Well, that's great!
B: So before we were born did we stay with Jesus? And then did He stuff us into your belly? And then we were born.  How do babies get out of your belly? Do they cut babies out of a big circle in your body?
Me: Some people get cuts to get their babies out! Like Aunt Sarah.  That's how baby Cole got here!
B: Uncle Kent and Aunt Sarah should have to more babies. And they should be girls...and we can name them!

This went on a bit, but it was funny to see how their minds process and try to figure out where they came from and how the world around them works.  Being a momma is hard work, but these moments of questions and laughter and figuring out together are worth a lot of bad days.

PS - Sorry, Sarah, for throwing you under the bus to get out of birthing questions!!! If the boys have c-section questions -- they now know who to talk to!!! ;)

Thursday, October 8, 2015

Caleb's craniosynostosis diagnosis

When I was pregnant with Caleb, I had a feeling that things wouldn't be "normal" for him.  I couldn't shake it and just prayed for peace and to be accepting of God's will for Caleb.

His head was kind of pointy when he was born.  I didn't think much of it and figured it was birth canal related.  I nonchalantly mentioned it at his one week check up and our pediatrician said we could keep an eye on it. I watched it and would look at his head.  He wouldn't lay on the back of his head, he mostly looked to the left, sometimes to the right. Caleb's head had (has) a raised bump, a ridge, on the top.  I would run my fingers over it while he was nursing or laying in my arms.  I knew it wasn't "normal", but I suppose I wasn't even completely sure it was abnormal! Also, as an informative side note: He had (has) a normal sized soft spot.

I searched, only once, "abnormal shaped head in infants" and craniosynostosis came up.  But the sites I saw had babies with larger foreheads, nothing too pointy in the back. I wouldn't let myself think too much into it.  I randomly saw things about craniosynostosis several times after I looked into it. I would daily, sometimes several times a day, pray that God would give me the strength to choose faith over fear.

I would choose to randomly bring up his head shape in conversation so no one looked at him funny or started asking questions.  Usually no one noticed as much as I did.  But his head was a weird shape -- surely I wasn't the only one to see it!

After a couple of weeks, I asked a friend about helmets since she had one for her son.  I figured a couple of months in a helmet would help his head reshape.  She mentioned her son having a scan to make sure it wasn't anything more and it made her feel a lot better knowing.

Yes. Of course.  That's a great idea.  A quick scan to make sure it's just from the birth canal and off to get a helmet.  Good call.

So I called the doctor on a Monday morning and left a message. "Caleb's head is still pointy and I would like you to look at it.  Or you can get him an x-ray to make sure. Either way."  They called me back at 1pm and got me an appointment at 3:40pm.  As it turns out, it's after FOUR babies that you can call and leave messages and they hear you out asap! :)

I walked into the appointment already a little overwhelmed.  I picked up the boys from school, a friend met me at the doctors office to take them, Elise was still tired from me waking her up to get the boys, Caleb was just quiet - per usual {and only 3 1/2 weeks old. haha}.  The doctor comes in, looks at his head and says, "Okay. This is craniosynostosis.  I'll take some pictures and text them to my friend in Fort Worth.  He is a pediatric neurosurgeon that I'll refer you to for the next step." I remember asking if this was common and he looked at me like I had one eye and said, "No. I have had two other cases in the last ten years."  He said words like surgery, helmets, Fort Worth, "He's a great doctor and surgeon."  All things I suppose made enough sense to retain, but nothing settled enough to ask questions.

Just like that.  A quick rush of all the things and all the feelings.  A force felt deep within, but nothing could come out of me except: what does my baby need and how can I best love and care for all of my people?

I called and texted Patrick.  I texted my closest friends.  I sat in my car, overwhelmed by information so unexpected.  Information that was so serious, information that was directly related to my baby.  And information that told me, for better or for worse, my baby was not physically perfect and needed surgery.

Before we could get appointments and an "official" diagnosis, we needed an X-ray.  I'll save that for an entry different post.  I do hope sharing all of this journey helps keep you informed and up to date.  But i mostly pray it helps others in situations like ours!

Sunday, October 4, 2015

Caleb pictures + life updates!

Caleb is seven weeks and some days today! I can't believe it's almost been two months since he was born.  We've gone through quite a bit in the last month. 

I will start writing about our craniosynostosis journey very soon.  And I'm more than ready to write it down and share the whole journey! I just need time.  I'm finding that there isn't a lot of that recently :) 

Here is a quick update:
*We decided to pull Andrew out of pre-K and have him to pre school again.  While this was a hard decision to make, it was the best thing for him.  It's amazing how things are so hard and humbling for a parent and don't phase the child much at all. I feel like over and over, recently, I've been given the opportunity to say "I choose the best for my child over the wants and desires of myself." It's hard. And sometimes I don't want to choose my child. I really love myself and doing what I want.  But that's not my job as a parent.  It's a sweet and humbling and revealing road.

*Caleb was diagnosed with craniosynostosis a few weeks ago.  We went from "His head is a funny shape, let's check with the doctor" to having surgery nearly scheduled in 3 1/2 weeks! 

*Elise turned two on Thursday! Two is a not a baby.  And she seems so grown up lately. I will post more on this another time, too.  She's such a treasure to our family.  I just can't imagine our family or our lives without her.  They would be lacking in such deep ways without her around!

That's all I can think of right now! Here are some pictures of Caleb from weeks 2-6ish.  

Snuggles with daddy!

He loves his paci!

Smiles for sister kisses.  This is NOT always the case ;)

Snug as a bug in a bean bag!

My days look a lot like this.

One month picture!

Sunday naps.

Post bathtime.

Bassinet sleeping.  Still tiny and fits just right in there!

Sleepy smiles.  He is always smiling in his sleep! It's so lovely.

A quick snooze while the kiddos play around him and I cook dinner!