Little Lydia and David

David and Lydia will always be bonded in my heart.

We met the Andersons the day before surgery. All of the pre-op families were put into one room with a nurse who wanted to keep the removed bone from surgery for research. Sounded good to me, but we of course had to sign 500 papers to do this. :)

I couldn't help but wonder if the couple to our left - who was from Brazil - could understand our fast-talking nurse. I kept looking at them to see if they were comprehending, and it seemed that they were.

When we were left alone, I starting chatting (I know you're shocked). Come to find out, they were from the U.S. - they were missionaries  in Brazil. No wonder they understood her fast English. :)

Fast forward to the next day.

Lydia was the third surgery on January 14. David was the fourth (and last). They had identical hospital rooms and had similar experiences in the hospital.

Mike, Kelli and their two sweet girls moved from Brazil to Dallas for several months to complete the helmet therapy.

We made sure Kelli and Lydia knew they never had to stay in a hotel, but could always stay at one of our houses. Between us, Chris's parents and grandparents, there is plenty of room to stay!

Kelli and Lydia had their new helmet appointment and three-month check-up this week too, so they were in town. I had such a great time visiting with Kelli and watching Lydia and David interact and play with each others' helmets. So precious!

"Hey! You have a special hat, too!"

"Yeah! But hey, your velcro is different than mine!"

We got to eat out, shop a bit, but mostly do lots of mom-talking about heads, surgeries, 2-year-olds (we both have two-year olds too!), and 6-month-olds.

I realized that we forgot to get a picture of the two of us together (next time, Kelli!), but got plenty of our two bundles.

 Waiting to see Dr. Jimenez

I caught myself just falling in love with this little girl. She is so sweet and I kept catching myself kissing her little helmet when I held her just like I do David's. She'll always have a special place in my heart, and every time I  see a helmet, it will be a great reminder to pray for this fellow family in the ministry.

Visit with the Doc

First, let me just ask this:

How many surgeons do you know who walk into a room and immediately give the patient's mom a big hug and then starts cooing over your baby?

I know one. And it's Dr. Jimenez.

We went in today for Davids 3 month post-op checkup (has it really been that long?!).

We scheduled the appointment because the section of bone they removed from his skull (about 3x4") has already grown back in. Yes, in three months, he essentially grew back a 3x4" hole in his head.

How wonderfully and fearfully we are made!

You see, last week we were in a routine helmet appointment and were packing up to go home. I had both boys locked and loaded in the school bus double stroller and made some comment to Darren that I keep the helmet on all the time in hopes of getting it off early. Darren is our cranial remolding specialist, who we lovingly refer to as our "helmet guy." ...I've asked, he doesn't mind.

Well, he said that wouldn't happen. Hey, that's ok. I've become rather fond of the way it protects him from flying toys, objects and two-year-olds around the house.

He said that if he's still pretty open, he'll definitely keep it on a long time.

"Well, did you feel him? He's already almost closed."

He looked a little perplexed and  said, "Really? Take him back out and let's take his helmet off again and check."

He felt around his head. "Wow," he said.

"Wow!" he said again.


Maybe it's just me, but when it comes to medical stuff, I like us to be the normal ... blending in ... not the "wow!" factor! It's never good to shock the medical professionals! :)

He said he wanted to get Wai, our nurse and case manager in to look at him too.

Lo and behold , guess who walked by literally as he was saying that?

Not Wai.

Just kidding.

It was Wai. I just thought it would be funny to do that. :) I know, cheesy.

She felt around his nearly-closed skull. She said they had a little boy close up 6 months post-op, but this is 3 months. It usually doesn't happen until 12-18 months. She wanted me to bring him in and see Dr. Jimenez next week.

I really wasn't worried, but wanted to know what to prepare myself for.

Would he need another surgery? Would his head fuse again? Would he have pressure in his head like before?

She didn't think any of that, but wanted me to talk to Dr. Jimenez.

We saw him today and I just love going to see him. He runs his schedule in clinical style, so in other words, every Wednesday afternoon, it's his craniosynostosis babies. We all gather in the waiting room, not forgetting to race to the sign-in sheet since it's first-come first serve. (Some families sign in, go to lunch, then come back - so you really have to be on your 'A' game!)

But in all seriousness, every family in there has gone through this, so we're all in the same boat and understand each other. Every time, I leave with hugs and email addresses from other moms. I love the "big family" atmosphere.

Anyway, when Dr. Jimenez checked David out, he wasn't concerned at all. He said we wanted that to happen and he still would have open sutures that would allow expansion, pressure relief, etc.

What a relief! 

His head is perfect! The ideal ratio is 78-80%.

David started at 62% (VERY LOW!) and is already is 80%!!!!

We are so, so, so thankful.

David is progressing perfectly, hitting all of his milestones, looking precious in his helmet and being plain sweet.

Thank YOU for your prayers, support and love!

The Great Divide

Since I am backlogging blogs from the past, this post serves as the divide from the past and present. If a post is before this, its in the past. If it's after, it's in the present. :)

The Wait

Oh, the wait.

How often I wished that they would have told us "Your son needs surgery. Now. We'll do it right now." In many ways, it would have been so much easier!

Instead, we had 12 weeks to wait - 6 of those after we had chosen our surgeon.

I knew the Lord had spoken. I knew he showed us exactly who to choose to operate on David. But that didn't change the worry that sat in my gut like spoiled milk. 

I knew that the intra-operative fatalities of babies in the past were the result of a blood disorder that would have caused deaths in any surgery, but that didn't stop me from wondering if David had the same disorder. How would we know?

In the weeks leading up to surgery, I kept my eye out for any bleeding abnormalities. He had his heel pricked for newborn screening ... it was fine. But then, I noticed he was waking up with bloody noses. That scared me. His left eye started bursting blood vessels regularly. Every week or two he would have complete pools of broken vessels in that one eye. That scared me more.

We asked several doctors about this. None seemed concerned. But this momma was.

Plainly, I was scared that David would not make it through the surgery. I prayed so many times that I would rather go than have anything ever happen to David.

Wai, the case managing RN for Dr. Jimenez, was very thorough to reassure me that they would take all of the necessary blood work, but I still asked a lot of questions - a lot of times.

In the end (we found this out much after the surgery), the bloody noses were from sensitive, dried-up sinuses due to the wintertime. The eye bursts still happen every once in a while, but a pediatric eye doctor determined that he simply has immature blood vessels in that eye.

But without knowing any of that at the time, each blood red spot I saw in him made the wait until the surgery even longer. I have been through hard times before, but this ... oh this was different. This was my son.

I don't think 10 minutes went by without me pleading to God to protect my child. I have never prayed more in my life, and I have never felt closer to God either. Those weeks are a spot in my memory which seem to have a golden hue as I remember the moments quietly sailing by. Despite the desperation I felt, the close communication I had with my Father in heaven and the unquenchable love I had for my family, and for this child, will always remain in the warmest parts of my heart.

Meeting the Doc

We met Dr. Jimenez on Wednesday, December 2.

Funny, but I remember that date like my birthday. Probably because I counted down until that day for so long. I needed the relief I hoped it would offer.

We first met with the helmet company. At the time, Darren from StarCranial worked out of a small medical closet while his new office was being built. I've described this room before. And while I'll save you the monologue about it's inconveniences, the little room has a serious soft spot in my heart.

But not as soft as the 3x4" hole in David's head was after surgery.

Don't get carried away. :)

One thing our pediatrician told us going into the meetings, was to also make sure we were happy with the helmet company since we'd be working with them so often.

We met with Darren and he explained all sorts of fascinating tidbits. Like that cranial remolding has been around for centuries. One Native American tribe planked foreheads because a flat, high forehead marked a holy man or priest.

And now you may go ahead and thank the Lord that you were not born into this tribe.

Amen? Amen.

OK, moving on... Darren talked us through thoroughly and empathetically, then took some measurements.

Before our appointment, we were certain David had a very mild case...mainly because we thought he was so darn cute.

But after he measured once, he looked surprised. Then he measured again.

Hmmmm.....

Then one more time.

The "number" they want in a normal baby is 80. Saggital Craniosynostosis babies were usually around 70.

David's was 62.

David not only had it, he really had it.


Chris and I left Darren's office feeling really good. The low index number confirmed that he really did need the surgery. Darren was candid about the surgeries, had been in both the endoscopic and traditional surgery worlds, and believed whole-heartedly in the endoscopic approach. He also left his secure job at another orthotic company just because exclusively working with these babies was so rewarding.

We went back to the waiting room.

Wednesdays at University Hospital's Pediatric Specialty Unit is neuro day. And with Dr. Jimenez being so well-known for his treatment of craniosynostosis, 9 out of 10 patients in the waiting room are craniosynostosis babies.

We got to meet several families who were there for check-ups. All of them had already had the surgery. What a relief it was to see healthy, active babies and toddlers scurrying about the waiting room. Two of the families in the room were clearly Christians, told us they wanted to visit our church while they were in town and told us how God gave them the confirmations for the right surgeons.

(Along this entire journey, there were people god sent in my path to comfort me, bring me peace and hope. They were certainly in that category.)

We got back to a patient room and waited to see Dr. Jiminez.

David was all smiles.

I prayed from the start that the Lord would guide Chris's heart. Chris had liked the previous surgeon so much that I knew the Lord would really impress on his heart and mind what we were supposed to do.

I would follow.

While waiting there, Chris leaned over and said, "Well, I've had overwhelming confirmations that we are supposed to do the endoscopic surgery."


All of the sudden I was nervous. Really? Are you sure? 


He was.

We met with Dr. Jimenez and it went well.

I thought I would leave the hospital feeling: Relief. Closure. Freedom.

I just felt nervous.

But God was clear when he spoke.

With all of the confirmations He had given me before that day, I knew.

With all of confirmations He had given Chris on that day, he knew.

We both knew.

It was just scary.

Clarity

As we weighed the traditional surgery and the endoscopic surgery, we felt no clarity. One day, we felt one way – the next day, the other.

We talked to several medical professionals who we know and trust, and it seemed that they all leaned toward the traditional method: It’s been around forever, it works, it’s done once and for all, and there is no helmet.

Then on the following Friday, our pediatrician called to check on David and see how our appointments were going.

I told him we visited with the surgeon he referred and liked her, but the surgery was so invasive. 

He agreed and went on to tell us that he had only met Dr. Jimenez once, and didn’t know him because he was somewhat new in town. He said he had read a bit on the endoscopic surgery since our last appointment, and said that each surgery worked, and that it really came down to our decision.

“I know you probably get this question a lot, and probably hate it, but what would you do if this were your child?” I asked.

Such a loaded question, I know, but his answer put me at such ease.

He said he’d have to get on his knees and seek the Lord on this one, and really rely on his peace to guide him. He said that in his life, all of the major decisions he has had to make have been so evident that he never had to question it. He brought up how he knew the hospital he was supposed to work in right when he walked into it, and mentioned a few other decisions that he just knew what he was supposed to do.

That spoke to me so much. When I walked onto the campus, I knew I was supposed to go to TCU for college; on our third date, I knew I was going to marry Chris; I knew when it was time to have Daniel, and I knew when it was time to have David.

I would know which surgery to choose for David.

He went on to say that if his daughter had this, a lesser invasive surgery, a smaller scar and a shorter recovery time would be appealing to him too.

And that validated me so much. It made me feel like a good momma, and not like I was naïve for looking into this newer, high-tech procedure.

The next day, Saturday, I called a woman whose son had the traditional surgery 26 years ago. She was a friend of a friend of Julie’s (Chris’s mom). She didn’t answer, but I left a message and hoped to hear back from her soon.

On Sunday, I thought about a college friend who I knew studied neurosurgery at UT Health Science Center – where Dr. Jimenez was the Chair of the Neurosurgery Department. I sent him a facebook message and asked his opinion of Dr. Jimenez.

Monday rolled around, and I saw I had gotten a message from Neal, my friend from college. He couldn’t speak highly enough of Dr. Jimenez. He said that he is a leader in the field of craniosynostosis correction, that his wife (Constance Barone) is a craniofacial surgeon, and they have collaborated to make the procedure good from both a “neuro” and a “cosmetic” point of view. He said we were very lucky to live in a place like San Antonio with a renowned pediatric neurosurgeon like Dr. Jimenez, who is very professional but also a very nice man. Above all else, he said is very good at what he does and doubted we would find anyone better than Dr. Jimenez. He said he knows many other surgeons who are truly impressed with his skill.

I felt excited when I read that.

And wouldn’t you know that that same morning, our phone rang. It was Nancy – the friend of a friend of Julie’s. She was wonderful. She answered some questions I had wondered about – like whether or not I would ever stop examining babies’ heads – she said I won’t. :) She also said it was a weird kind of ministry we have been given, but that the Lord is going to use this in so many neat ways throughout our lives.

We talked awhile, but a few parts really sunk in:

1. She said they got hair transplants for her son at 15 years old to try to cover the scar that stood out amongst his thick head of hair.
2. She also said that even if we didn’t get a helmet for David, we would wish we had one. They did not get a helmet after their traditional surgery, and she said that she chased her son around for 18 months in order to keep him from falling, hitting his head, or getting hurt. She said he even slept in between her and her husband for several months so he wouldn’t bump his head on the crib rails or fall off of a toddler bed.

The email and phone call on the same day were very confirming for me, but you know God ...well, he always outdoes himself.

That very same afternoon, I got an email from our old neighbor – remember the retired pediatrician I talked about in this post who didn’t think David would need surgery?

He said he had been trying to call us but our number had changed and asked me to call him as soon as possible.

I called him immediately.

I stepped into David's room for quietness, and the evening sun was hitting at a beautiful angle. The whole room was golden. I will never forget that.

He asked how David was doing, and I told him that our pediatrician did diagnose him and ordered C/T scans to confirm it, and that we had met with one pediatric neurosurgeon and would meet with another a week-and-a-half later.

He asked who, but hadn’t heard of  her since he had only retired in San Antonio, and had not worked here.

I didn’t know how much he knew about the surgeries, since I found that many pediatricians didn’t even know how to diagnose craniosynostosis, let alone about the surgeries there were to correct it.

I told him there was an endoscopic way now.

“Yes!” He said.

He asked who that surgeon was, and I told him it was David Jimenez.

He said THAT was why he called. He said the more he thought about David, the more he realized that he did have craniosynostosis and would need to be operated on.

He used to teach pediatrics at University of Missouri – Columbia School of Medicine, which is exactly where Dr. Jimenez and his wife invented the endoscopic procedure.

He was there when they invented it, and couldn’t say enough about him. He said we would be in great hands with him and wanted to make sure we had heard of, and got hooked up with, Dr. Jimenez.

I hung up and was in awe.

We prayed for a confirmation.

We and got three.

On the same day.

I told Chris, and called our families to tell them what had just happened.

When I called Chris’s family – they were in Houston visiting his aunt – they were relieved. They hadn’t said much about their opinions and supported us regardless, but said they were all talking about it the night before. Chris’s dad had choked up just describing the traditional surgery to his aunt, and though they didn’t tell us, they all agreed that the endoscopic surgery was a wonderful way to treat it. (And if you know his very traditional grandmother who wholeheartedly believes in old-fashioned medicine, and a lot of it, this is huge!)

Chris was pretty sure he agreed, but still had some searching to do. So searching is exactly whathe did. He said that one of his greatest confirmation was when he googled “Best Surgeon + Craniosynostosis + Texas” and Dr. Jimenez’s name was #1 on the list. Ha!

God knows what we need: I need a choir singing and a light shining on the answer, while Chris just needs it written plain as day on google.com!

Oh, the joys and differences of men and women…

All I know is that when God speaks, He speaks clearly.

When I think about that Monday, November 23, I am overwhelmed with a still peace and glowing warmth I cannot even describe. I am not sure I  have ever felt anything like that.

God is so good, and I was excited to meet with the helmet company and the neurosurgeon on the next Wednesday.

a decision {Too Large} for us

As time passed, my worries only increased. 

Everything at his 2-week check up went perfectly, but my mind was relentless.

That night, I felt like I was losing it. I changed David's diaper and noticed that the diaper rash he had since birth was only getting worse despite my best efforts. Then I noticed he was swollen to one side and worried he might have a hernia.

I remembered reading in a medical journal about a very rare syndrome (I think there had only been 2 confirmed cases) in which both hernias and craniosynostosis were associated with a form of severe mental retardation.

The words severe mental retardation glared blindingly in my mind.

I then remember Chris asked me what was wrong. I folded onto the ground by our bed and told him I was so scared that there was something seriously wrong with David and I was the one who caused it.

Chris is my strength. He approached my worrying in this like he had counseled me 100 times in this before. But it was the first.

We called and talked to the pediatrician on call, who happened to be Chris's childhood pediatrician (thank you again for your provision, Lord!). He assured me that even if it was a hernia, it would be just fine...but it was probably what is called a hydrocele, which is very common and goes away on its own (it was the latter).

I slept okay, but woke up and cried all morning. I was so scared for David. He was too young to smile, so I couldn't even get that response from him. I felt that if he could just smile at me, it would be my sign that he was okay. But he was only 3 weeks old, so I just prayed that God would let him smile on time.

I went that afternoon to see my OB. I wondered if what I was experiencing was hormonal. It just isn't like me to worry - especially in such a desperate way. She was so sensitive toward me and even shared with me some of her post-baby struggles. She assured me I was normal and that it’s very common after a having baby – and with a stressor like this on hand, it is only amplified.

I knew I had to put everything aside but dealing with David.

I made appointments for a CT scan and for consultations with both surgeons. I figured that seeing the surgeon our pediatrician recommended would at least give us a good baseline on which to compare Dr. Jimenez.

We saw her on David’s 4 week birthday. We were going in there just to check it off of the list. We had no plans of liking her, let alone choosing her for the surgery.

Unfortunately, that wasn’t the case. We liked her – a lot. She was good, smart, thorough, and really seemed to adore David. She told us a lot of details of his condition, gave us a play-by-play of her surgery, then broke out a huge binder.

I’m not squeamish – at all; I can watch as somebody draws my blood with no problem and wished I could have watched when they did my c-section with Daniel. But when she opened that huge binder of intraoperative photos, I saw pictures of tiny babies with shaved heads, scalps rolled back into clips and their skulls cut apart.

My heart sank. I firmly told myself right then that David would not be going through that.

But the more we talked, the more we liked her.

There were major pros and cons to both surgeries.

With the endoscopic surgery, he would have an easier surgery and recovery, but he would have a huge hole in his skull and would have to wear a helmet for 12-15 months. That helmet would require weekly appointments for the first 6-8 weeks, then they would taper down to twice a month, then monthly as time passed.

With the traditional surgery, he would go through that awful process and have a huge scar, but once the surgery was over, there would be no gaps in his skull, and no helmet.

This surgeon also took the liberty to tell us that she had never lost a patient in this surgery, while Dr. Jimenez had.

We met with her on Friday, November 13 and didn’t meet with Dr. Jimenez until Wednesday, December 2. That doesn't seem like a long time, but when the hours crawl like weeks, it's brutal.

Our decision went from 100% to more like 50%. We wavered back and forth, and each day leaned a different way.

I couldn’t think of anything else. I even dreamed nightly about the surgeries and weighed the decision in my sleep.


There were mornings when the first thing Chris said to me was, "Which surgery are you thinking today?"


I didn't know.

Even as his parents, this was a choice we could not make for our baby.

We prayed for clarity. We prayed for peace.

But at this point, all we had were pros and cons.

I remember rocking David in his nursery with tears rolling down my cheeks as I earnestly prayed:

Lord, you love this child even more than I do. I don’t know how, but I know you do.  I give him to you, because as backwards as it seems for a mother to admit, I know you’ll take better care of him than I ever could.