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.

The Diagnosis

I felt okay about my precious David for about 18 hours. I slept well after our pediatrician friend said he looked fine, but the next day, I couldn't get the images of those familiar babies out of my head.

I just knew he had it. I scoured the internet – it was the only resource I had at this point.

I read each and every article I came across. I remember wondering what I used to do with my free time before I had all these articles to read. I read medical journals, discussion forums, hospital web sites - anything and everything. I wanted information.  I wanted to know that David only had craniosynostosis, and not one of the syndromes that can sometimes be associated with it; Syndromes that also carried other disorders: from minor deformities to severe mental retardation.

Truthfully, I have never been so scared as when I was worrying about David before his surgery. The craniosynostis did not scare me, it was whether or not it came with something else.

I ached.

I went through waves of hope and desparation. I cried. A lot.

Chris was wonderful to assure me, support me and talk sense to me when I started getting anxious.
Eventually I started reading not only about the disorder, but how to fix it.

I found out that the surgery to fix Sagittal Craniosynostosis was brutal; they would shave our baby’s entire head, cut a zig-zag incision from ear to ear, roll all of the skin off of his head, cut up his skull and piece it back together to form a round head. He’d be under for 6-7 hours, have 2 or 3 complete blood transfusions, stay in the hospital for a week and have swelling so bad that he couldn’t open his eyes for 3 days.

I was heartbroken. I did not want David to go through this.

I remembered seeing something about an endoscopic procedure when I first googled it, so I looked into that. In this procedure, they made only two one-inch incisions at each soft spot, took only 45-60 minutes to complete the procedure, he would lose only 2 tablespoons of blood, and would go home the next day.

Judging based only on these stats, we knew which one we wanted to do, and I would travel anywhere to find the best surgeon to do it. We researched a little bit more, trying to find out where we could have this done. What we found out made my jaw drop.

The two surgeons who invented the endoscopic procedure 14 years ago were a husband and wife team who practiced at (ready for this?) University Hospital in San Antonio, Texas.

It was a Sunday afternoon and I’ll never forget the peace that flooded my heart when I read that.

I called the next day and talked to Wai, the case manager and nurse in charge. She said the next surgery date was January 14.

David would be within 2 days of 3 months old (3 months is the ideal time to perform the surgery) and it would be 4 days after we would get home from a wedding in the Dominican Republic.

I couldn't believe how perfectly the timing worked out. It would be the perfect age for him to get the surgery and right after we were to go on vacation with only David in tow.

God's timing is so wonderful.

David hadn't even been officially diagnosed, but I asked her to reserve us that spot.

The next Friday, we went to his two-week check up (although he was three weeks old at this point). Dr. Pauli walked in and I noticed his eyes weren’t looking at mine or Chris’s, but at David’s head resting on my shoulder. I already knew he had craniosynostosis, so I spoke up to hopefully let him know that he wasn’t going to have to be the bearer of bad news.

“He’s doing great, but our main concern is his head.” I said.

He agreed and went on to explain the diagnosis.

Dr. Pauli referred us to a pediatric neurosurgeon here in San Antonio. It wasn’t the one I wanted, and she didn’t do the endoscopic surgery. I asked him why he didn’t refer to Dr. Jimenez (who does the endoscopic surgery), and he said he has a long-standing relationship with the other surgeon and that she was highly respected. He also said he wanted us to be completely at peace with whomever we chose, and would send us as many referrals as we needed to feel that.

We got in the car with both boys in tow. On our way home, David Crowder’s How He Loves came on. I just lost it. I knew David had craniosynostosis, but there was something about him being officially diagnosed that made it all so real. It wasn’t the first time I cried over this, and it wouldn’t be the last.

But now the ball was rolling. Gone were the days of thinking the surgery was far off. It was time to get started.

crane-eo-SINOS-tow-sis

After David was born, we were in the hospital over the weekend, so naturally we saw a different pediatricians every day - depending who was on call. All three mentioned his head.

I had a long labor. He was engaged (dropped) the whole time. Of course his head was funny. It was going to go away. I explained that to each physician, and they seemed to take that as the explanation.

My OB came in and said, “Did you feel his soft spots? Look, feel here. They are SO small. That’s why we had a hard time determining his position in the womb and really tell what was going on. We could never really feel them.”

I asked her if she thought something was wrong, and mentioned that everyone kept talking about his head. She told me there was nothing to worry about and that he was beautiful and perfect. She joked about all the different cone heads she had seen - sideways cones, backwards cones, etc. It made me feel better.

We enjoyed our stay in the hospital. Let me rephrase - I enjoyed our stay in the hospital. I was on a natural high thanks to the adrenaline of being a new mom again. To me, that hospital stay is like a vacation where people want and get paid to help us moms out. I mean, what other time in life do we get our own personal staff? We (the new moms) get a bed with a remote control built right in so no one can steal it. It not only changes the TV channel, but props up our feet or our heads - or both if we prefer. :) A masseuse comes in and gives a free 15-minute massage and offers more for a small fee (I totally should have opted more). There is a refreshment room just down the hall - juice, milk, cookies, coffee, water, and it's open 24 hours a day. You can bet I was a regular. Graham crackers and cranberry juice were my midnight snacks every night that weekend. No one expects a new mom to do anything but lie in bed and cuddle the precious burrito that was wiped down and wrapped up just for his momma. No dishes. No laundry. No picking up the toy that she just stubbed her toe on. Just pampering.

And Chris - well, he gets a little stir-crazy lying around for 3 days watching me look at a baby. He enjoys it for a little while, but man when day three rolled around, he was revving to bolt at that door and never return. :)

Much to Chris's delight, we did leave eventually.

The first few days at home were so sweet. Such a special bonding time with the four of us.

I'll never forget how proudly Daniel wheeled around David in his bassinet. Whichever room we were spending time in, we would soon see the wooden corner of David's bassinet peek around the doorway, followed shortly by a little blond with arms extended in order to push his brother into inclusion.

How dear I'll always hold that memory.

Several times, Chris asked about David's head. "It's going to round out, right?"

"Of course it's going to round out," I answered. "All babies' heads are funny, and they round out perfectly fine."

 

When David was 5 days old, we went to his weight-check at the pediatrician's office. While we were there, the nurse who was checking him mentioned ... you guessed it: his head. She looked at it from what must have been 98 angles and finally said, “Now, I don’t want you to go home and google this, but it looks like he has something called craniosynostosis. My son had it, and there are many kinds. The kind he had was very mild and didn’t require any treatment.

I brushed it off and chalked it up to what I had all along: I had a long labor and his head was probably sideways for most of it, so that’s all it was. His head was going to round out like every other baby.

That night, I noticed a ridge on the top of his head. I guess I hadn't really felt around his head much, but it was definitely there. Wow. It was definitely there. How had I not felt that? It was a hard, thick ridge of bone that ran from his front soft spot to his back soft spot.

That night and the many nights to follow as we tucked sweet David in to the bassinet by our bed, Chris asked about his head. I answered the same way each time but silently prayed that the ridge that lined his head would soon smooth out.

Three days later, the ridge on his head was still there. I knew that overlaps were supposed to go away in the first 12-48 hours.

David was 8 days old.

I tried to remember that long word she had said. That's right - so I could do exactly what she said not to do: google it.

I did. I saw lots of weird heads, deformed faces, and some images that simultaneously stopped and broke my heart.  But there was this one head, this head I kept running across. The shape of that head that was very familiar.

In fact, it looked exactly like David’s head.

(David Two Weeks Old)

It was called Sagittal Craniosynostosis.

David had it. I knew it. No doubts. I knew it. He would have surgery. In the front of my mind, I had hope that he wouldn't need surgery; but slowly boiling in the back of my mind, I always knew he would.

I read a lot that night. Little did I know, I would soon be reading a lot every night. But that night in particular, I learned that craniosynostosis is a condition in which two or more growth plates fuse together prematurely.

You see, when babies are born, the plates in their head are not attached so that they can overlap and fit through the birth canal, and to allow their brain to grow rapidly in the first year of life (2/3 of brain growth happens in the first 12 months!). The gaps where these plates meet is why babies have soft spots.

Babies who have craniosynostosis are born with two or more of their plates (in David's case, running front to back along the top of his head) fused together.  The fused line creates a hard ridge along that line (called the sagittal suture) that could not expand and grow normally as the head grows.

So basically, sagittal craniosynostosis babies have heads that are long and skinny when looking down at the top of it and will continue to grow this way unless it is corrected.

Some children will grow with this condition to be absolutely perfect in every way except their unusual head shape, but sometimes (about 20-30% of the time), the odd head shape can create other problems, such as learning disabilities, visual problems, etc. Once it is corrected, however, these risks are gone, and the condition is gone.

The correction, however, requires surgery at a very young age.

I visited our old neighbor, who is a retired pediatrician and taught at the medical schools of University of Missouri at Columbia and Vanderbilt. I pulled up to his house at 9 o'clock at night. I was a scared mom with a new baby - and I was desperate for somebody to tell me there was nothing wrong... Preferably before I had to try to fall asleep.

He looked at 9-day-old David and noticed what I was concerned about. He said it was too early to tell and that it could still round out just fine. He said he didn’t think he’d need to be operated on and that he’d be just fine.

I was so thankful.

I could relax and enjoy my sweet baby.

For a little while any way…

The Lord is Good: David is born

I woke up Thursday, October 15 and I had a feeling that this was the day. I told Chris to go ahead and get a bag ready and keep his phone on.

I went back to the OB's that afternoon. I was 3 cm, 90% effaced, and the bag of waters was busting at the seams. She told me she was on call all weekend.

The above picture was taken about 4 pm, I was just starting labor. And Daniel was being my little handyman ham ... with tape measure in hand. :)

At about 5:15, I started writing down contraction times at 5 minutes apart and called Chris. By 6:15, they were every 3 minutes apart.

At 8, We went to the hospital.

In my mind, I dilated s-l-o-w. I had previously dilated more quickly with Daniel. This time around, several hours into my hospital stay, I was still 5 cm.

(Typically, if your contractions are close together, the baby is coming fast. Knowing what I know now, I think  my body was trying to get him out quickly, but his head couldn't mold; he had to take his time. They also couldn't really tell how dilated I was since they could never find his tiny back soft spot... Dilation after 6 cm is based not on actual centimeters, but on the location soft spots. Learn something new every day, huh? :)

After being stalled  for so long, my wonderful OB Dr. Van came back in and I had her break my water. I went to 6 cm and stayed there for a few hours too.

To say I was frustrated is an understatement.

To ask my husband, he might use words like, insanity, lunacy, and the like. :o)

Looking back, this is where it got funny (although it was not at the time!): During the contractions, I was in so much pain and would ask Chris to pray for me. Now, keep in mind at this point, it was 3 or 4 in the morning. Not exactly a time when most people are thinking creatively!

So, the scene went like this:
(Contraction coming on.)
Me: Pray.
Chris: (Silence)
Me: PRAY!
Chris: Outloud?
Me: YES!
Chris: Lord, be with Little Bre’anna. Help her get through this contraction. Amen.
Me: (Catching my breath) Pray GOOD!
Chris: Lord, be with Little Bre’anna. Help her get through this contraction. This one’s a strong one. Amen.

This repeated about 30 times over the next hour. And I am not even kidding when I say this EXACT conversation. He even asked "outloud?" every single time. I nearly threw him out the window.

The next morning we were laughing about it and coming up with things he could have said, like: Sorrow may last through the night, but joy comes in the morning, etc! 

Hehe.

Well finally, joy did come at 5:50 in the morning, and David was born.

He let out a soft cry – just enough to let me know he was okay. It was just like he was in the womb: calm and quiet.

I remember after his little cry, the nurse said, "Well you can do better than that!" And in my natural mommy-defense, I remember already thinking, No,no, no - That's just David. He's always been sweet and quiet.

(I always get a kick out of how indicative the first cry is. Daniel came out with a wail you could hear a block away. David let out more of whimper. If you meet them today, this is still true! Daniel is our firecracker. David is our peaceful one.)

Next thing I knew, they were raising him up to my chest: goopy, cottage-cheesy and beautiful. I held him and kissed him and swelled with joy.

He was here. Just the way he was supposed to be.

I held him for a bit, Chris held him for a it, and they weighed him and cleaned him up: 19 inches long and 7 pounds, 6 ounces.

They handed him back to me all swaddled and warm.


During my whole pregnancy, I kept having the same thought: I KNOW Daniel. I know everything about him. I know how he’ll react to any given situation and how to curb those reactions. When I was pregnant for the first time, I paid attention to every move and knew Daniel’s personality before I had him. For the past nine months, I couldn’t understand how I could know another child in this way.

While I held my swaddled baby, I looked at his sweet little face, his opened eyes and sweet, calm expressions.

All I could think was I know you. I know you so well.

I get teary-eyed just thinking how great our God is that he bonds a mother and her children so tightly.

I ate a snack of graham crackers and cranberry juice, feeling like the queen of the world. 

About an hour later, our pediatrician Dr. Pauli came in. For some reason, this moment where I imagined him delivering horrible news didn't seem scary at all.

I was calm.

Serene.

Joyful.

At peace.

He said our timing was perfect. He was only working a few hours that morning before he headed out for vacation. What a God thing. I was glad he was the one to see David. He's smart, kind, a godly man, and a great doctor. If there is something weird going on, he's going to catch it.

"David looks great," He said. "He's healthy, breathing great, heartbeat is great...

He does have some funny molding on his head that I'm going to watch over the next couple of weeks,

but other than that, he's perfect."

I smiled.

A funny head? I thought, Oh, I can deal with a funny head.

All the scary things I had envisioned disappeared.

David was perfect.

He had a funny head.

But he was perfect.

Then I rolled over and took a nap.