Two

Max is our miracle baby. 

I had all but given up hope of ever conceiving a child again.  I had a preschooler, a kindergartener, and a studio of 30 violin students.  I had started working as a doula, and was loving the increasing number of births I was attending.

We had been to two different fertility doctors, done a few cycles with fertility drugs, with no success.  Our next option was injectable drugs, costing around $3000 a cycle.  There was no way we could afford that, and we had no insurance coverage for infertility. 

I had made peace with being done.  I was excited about it.  I wondered why in the world I had decided "starting over" with a newborn was such a great idea when I was so close to having all that time to myself and developing my career.  I had even put out feelers about a possible midwife apprenticeship. 

At the end of the last cycle, I decided I needed to take one more pregnancy test, to prove to myself that we were done.  Then when it was negative, I reasoned, I could get back to the business of living my life and parenting my girls.

Except it wasn't negative.  And we were thrilled.

***

Since we were being followed by a fertility specialist, protocol dicatated a "viability" ultrasound at 6 weeks.  I was destroyed when the ultrasound showed no heartbeat. 

"I'm sorry," the Doctor said "There's nothing there.  We should see a heartbeat by now.  I'm afraid this isn't a viable pregnancy."

I don't remember what else was said, except that he told me that I had less than  5% chance of having the pregnancy continue, and that I shouldn't get my hopes up.  He scheduled me to come in four days later to do another check, and  said we could talk about options for ending the pregnancy at that point.

Waiting those four days was excruciating.  I have never experienced grief like that in my life.

We went back in on a Saturday, to find a blinking little heartbeat, and a Doctor who nonchalantly said "Well, it's a good thing we had you come back in to check."

***

Max's labor was complicated, long, and difficult.  He was born with his cord wrapped tightly around his neck three times, and wasn't breathing at birth.

While I felt his spirit all around me, and knew that he was going to be fine, I found out later that my husband and my mom were very scared for his life.

It took some maneuvering by my midwife and some fancy resuscitation before we heard his first cry.

***

Shortly after he was born, we started on the crazy medical roller coaster.  Besides finding out that he had a major skull condition, he was also having trouble feeding.  We were told he was aspirating fluid into his lungs, which was a very dangerous condition, and that he couldn't breastfeed anymore because the risks to him were just too great. 

Once again, I was devastated.  Breastfeeding was the only thing I knew.  I consulted with doctors, with lactations consultants, wth specialists.  They all told me the same thing- no more breastfeeding.

What they didn't count on was Max, and the miracles we had already experienced.  Lots of prayer, a priesthood blessing, and I continued to nurse my baby boy.  He weaned a few months ago after 20 or so months of peaceful breastfeeding.  He hasn't had a single lung issue.

***

I've talked a lot on this blog about Max's surgeries.  They are, undoubtedly, the hardest things I've ever had to go through as a parent.  There are no words to describe what it feels like to see your tiny baby hooked up to tubes, wires, and breathing machines in the ICU.

  To be told that he has a baffling complication from surgery that no one can figure out.  To be told just a few short months after the first surgery that the first surgery was a failure and that he would need a second, just as dramatic and invasive as the first.

Everyone says kids are reslient.  I would never have believed that a week after getting his skull opereated on that he would be beaming up at me, almost as if nothing had happened.

***

We celebrated Max's second birthday yesterday.  He is a charming, hilarious, full of trouble little boy, like any two year old should be.  It's been months since he has needed a trip to a Doctor's office, an instacare, or an ER.  (And yes, I did just knock on wood.)  His scar is nearly completely hidden in his mop of crazy curly hair.  He shoots basketballs like a pro, (you mean you don't have a Fisher Price basketball hoop in your front room?) is learning new words at a rate of 5-10 per day, (his newest and cutest is "elevator,") and shows no sign of adverse effects from any of his crazy adventures. 

He makes me laugh every day.  He helps me not to take myself so seriously. 

And he taught me a lot about miracles. 

One Year, One Month

Yesterday marked some interesting milestones.  A year ago yesterday, we were sitting in the waiting room at Primary Children's Medical Center as our five and a half month old baby son underwent his first surgery. 

It's a good thing that when we were sitting in the hospital a year ago that I had no idea we would be doing it again eleven short months later. 

Yesterday also marked a month and a day from surgery number two. 

Max is doing beautifully.  Looking at him, you would never know that he has been through such an ordeal, not just once but twice.  His head is filled with the normal post-op lumps and bumps, but there is nothing overly concerning, which is saying something because a month post-op from his first surgery, I could still see the triangular shape to his forehead. 

I can't describe how much I would love to put all of this behind us and never think of it again.  We have our first real post-op appointment this week, and I'm hoping that's a significant step towards that.

Oh, and did I mention that yesterday was my birthday?  We got a sitter, saw a movie, and ate crab legs.  Good day. 

Second (and third) opinions

I didn't ever intend for this to be a blog about craniosynostosis. But I also thought, when Max was first diagnosed, that we would have the operation, then we would be done. Sure, it would be difficult. But we consoled ourselves thinking that by the time Max celebrated his first birthday by mashing cake all over his face, craniosynostosis would be a distant memory. As is the case with many other things in my life, nothing ever goes quite the way I plan it to.

Today we met with another craniofacial surgeon to get an opinion about how Max is progressing after surgery. Despite hearing that we needed a repeat surgery from a specialist in Texas, we were both hoping to hear something different today.

The surgeon we saw today was very knowledgeable and very thorough. He actually trained our first surgeon, and told us that he has done around 1500 cranio repairs. His opinion was that Max's head wasn't corrected enough. He couldn't tell us for sure if his bones were shifting post-op, or if the swelling was just subsiding enough to show us the true shape of his forehead, but it was obvious to him that the results of the surgery weren't what they were supposed to be. In fact, he told us that when he first walked into the room and looked at Max, it looked as if Max had never had any surgery at all.

The frustrating thing about the visit with this surgeon is that he wouldn't recommend for or against surgery. He told us that it wouldn't get better from this point, and could possibly get worse. But he also told us that Max is at risk of developmental disabilities just by virtue of having metopic synostosis in the first place, and that doing a secondary correction doesn't decrease his likelihood of delays. (Fortunately as of now, Max is meeting all his milestones and progressing great!) He said that Max is not, as of now, in danger from increased intercranial pressure, and that he could help Max's eyes space out more with a second surgery. But he also told us that a second surgery is significantly more complicated, due to scar tissue, increased risk of bleeding and the fact that he would be undoing something another surgeon already did. Because his recovery was complicated previously by low sodium levels, there is a greater possibility we would be facing that again as well. So we have to weigh the risks of surgery against what we think the benefits would be.

I don't know how we are supposed to make a decision like this. How can I put my baby boy through another long, painful and risky procedure. But then again, I keep picturing how I would feel if Max came to me when he was 15 or 16 and told me he wished we would have fixed this when we had the chance. I worry about doing all this for "cosmetic" reasons. But the women I have talked to whose kids have all been through this keep reminding me that this surgery isn't cosmetic, which would take something normal and make it better. It's corrective, meaning it's taking something incorrect, or defective, and making it normal.

We left the surgeon's office planning to make a return trip in two-three months so that we could evaluate with him the direction Max's head shape is taking, and make a more firm decision about surgery then. When we got home, I found this email waiting in my inbox:

Stacy,
I agree with you. I think the temporal area of the forehead is settling far more than I would have expected. We have two options. First, we could wait to see if his head shape improves with time. I expect that if we take that approach, we would see some improvement, but probably not normalization. Second, we could return to surgery and reposition the brow with some bone grafting to help it remain secure. The bone graft could be taken from surrounding cranial bone so we would not have to take bone from another part of his body. As difficult as it is to say, I believe we would be better off going back to surgery. I am sorry about that. But all things considered, it is probably best to do that now while he is still young enough to not remember. I would love to talk this over with you by phone or in person. My cell phone number is xxx-xxx-xxxx.

So that settles it. One cranio-facial specialist from Texas say surgery, our original surgeon says surgery, and another surgeon says surgery is an option we should consider. It looks like we're headed for another surgery.

The question is now, how do we know who is a good surgeon? I know for certain that we won't go back with our original surgeon. In fact, we're contemplating a malpractice suit at this point. How do I trust that the surgeon we met with today has the experience to tackle what he defined as a difficult and rare procedure? There is another craniofacial surgeon here that we'll meet with just to cover all our bases, but how can I just take someones word for it when it involves my son's life? Naturally, we want the best for him, and if that involves flying to Texas to get the best possible care, we'll do it and enjoy a giant steak while we're there. But even then, how am I supposed to make this decision for him? Who decided I was smart and responsible enough to do this? I don't think I signed up for this...

My 3 cents worth

Yesterday I got a gem of a statement from my dear friends in the billing department of Primary Children's Medical Center.

Balance to be paid: $42,266.80
Billing adjustment: -$.03

Gosh. They are so generous. Its a really good thing they knocked off those three pennies, because $42,266.83 just wasn't in the budget. I think I'll go write and mail that check right now...

The Cranio-coaster

When I first joined up on the CranioKids message board, I heard a lot of moms referring to their journey with craniosynostosis as the "Cranio coaster." Honestly, I thought it was cheesy and a little over-dramatic. I figured that Max would have his surgery, and then it would be over. His head would be perfect, and aside from yearly follow-ups for a few years with his surgeon, everything would be fine. Right?

Wrong.

Turns out that my worries post-op are just as pronounced as worries pre-op. Turns out that I obsess about Max's head at least twenty-five times a day. Turns out that there hasn't been a day when I haven't worried about him having another surgery.

And it turns out that once again, things never go quite as I expect them to.

Ever since Max's swelling decreased enough for me to see the finished product, I haven't been thrilled with the results of the surgery. I was prepared for this- I had read stories of lots of moms who freaked out over every little bump and I swore I wasn't going to be one of those moms. But I started taking weekly pictures, some of which I've posted here. About four weeks post-op, I noticed that his ridge between his eyes had returned. In the eight week post-op pictures, I thought that his head still looked a little triangular, and spent about an hour comparing pre-op and post-op pictures and scrutinizing them for differences.

In the past two weeks, Max's head shape has changed even more, to the point where it is looking almost as it did before surgery. Although the ridge down the middle of the forehead is less pronounced, its still there. His head is tending more and more towards that triangular shape every day. And he once again has significant narrowing above his eyebrows- we refer to that as pinching. Finally, I couldn't handle worrying about it anymore, and emailed some pictures to his surgeon. Wanting to cover my bases, I also emailed some pictures to a renowned cranio-facial surgeon, Dr Jeffrey Fearon, in Dallas TX. Quite a few women on the Cranio board have been patients of his, and he is more than willing to give opinions over email. (Yeah, I know. I sent pictures off to an "Internet doc." But he's THE expert on craniosynostosis surgery. Rather than being a plastic surgeon who does boob jobs and tummy tucks, and an occasional cranio surgery on the side, Dr Fearon does exclusively children's cranio work. People travel from all over the world to work with him. I've seen him not recommend surgery, I've seen him tell parents to watch and wait, and I've seen him recommend surgery. So I felt pretty comfortable asking for his opinion.) Less than 48 hours later, I got this reply:

Thanks for your e-mail. I looked at the pictures that you sent me of Max, and I do have to agree with you that he doesn't really look all that different, aside from the scar across the top of his head. I agree with half of the advice you have gotten, which is to wait. As for the watch part, I do not expect it to get better. We recently published a study that showed that after surgery, children with single sutural synostosis (like metopic) do not grow normally after surgery, with a tendency to grow back slightly toward the way
they were before surgery, over the course of many years. We recommended
slightly over-correcting at the time of surgery to help avoid the need for a
second operation. It is my impression that Max did not get an adequate
correction, and I would not expect it to get better. I am sorry to say
that based on what I can see in the pictures that you sent, I would recommend repeating the operation, but I would suggest waiting at least 9 months from the last operation to let him heal in completely. I would be happy to either take care of your son, or just offer advice (by e-mail,phone consultation, or office visit), whatevr you prefer. Although you didn't tell me who did the initial surgery, I would recommend considering going to a different surgeon for his next procedure.

I was stunned. I felt like I had been sucker-punched to the gut. Although for weeks, my mother instinct had been telling me something wasn't right, I kept expecting that I would be told "Its normal, and you have nothing to worry about. And here I was being told the exact opposite.

We resolved not to do anything until we heard back from our surgeon. He told me exactly what I thought he would- "Its normal, things are progressing the way they should." The problem is, I know they're not. I've been following the pictures of other boys who are Max's age and had surgery about the same time, and the differences are dramatic. Max's head is triangular again! So I pushed the issue, explained to him that things had changed significantly, even in the past two weeks, and he asked for another round of photos. Problem is, he's going out of town for a week, so won't even look at the photos until then. Sigh.

So yesterday, I say Max down for another round of pictures.

Can you see the peak in his forehead? The triangular shape, referred to as "trigonocephaly" is what the surgery was supposed to repair.
This is the picture that really shows it. You can see his forehead coming to a point, and you can see the pinching right above his eyebrows, as well as the narrowness/hollowness of his temples. All of this the original surgery was supposed to fix.
I knew that things weren't right with Max, but when I saw these pictures, I had a good long cry. Because I knew that if I were looking at these pictures for the first time, I would think that kid had metopic synostosis and was going to require surgery. And then I realized that no matter what my surgeon says, we are likely going to have to repeat this entire process.
A few hours later, I got an email back from my surgeon's nurse saying she could see exactly what I was talking about and she would show these to the Doctor right away. I hate the waiting part.
So I sent these pictures off to Dr Fearon in Texas, and set up a consultation for a second (or is it third?) opinion with another cranio-facial surgeon at Primary's. We've actually kicked around the idea of traveling to Dallas to make sure the surgery gets done right the second time...
So it turns out my friends at CranioKids were right. It is a roller coaster. One I thought I would be exiting a long time ago, but it turns out the roller coaster is just gearing up for another go-round.

Having a healthy boy.... priceless

Apparently, its expensive to have your kid's skull completely remodeled. Who would have guessed? The bills for Max's surgery have started to roll in, and if nothing else, they are good for a hearty laugh, as well as a prayer of thanks for decent insurance and my new four favorite words: "Out of Pocket Maximum." So, in no particular order, here are some of the things that you probably don't want to know about what it costs to have major surgery, five days in the PICU, and a combined eight days at Primary Childrens' Medical Center.


291 minutes in the OR= $4949.91 or approximately $17.01 per minute.

Daily Charge for a room in the PICU= $1185.10 (Should have gotten a room at the Grand America Hotel instead. Cheaper, better beds, better food! And just so you know, this does not include nursing services or anything else. It just includes ths space we took up in the PICU and the air we breathed.)

1 tsp dose of Lortab= $6.18 (1 Bottle of Lortab is a $4.00 generic prescription at Smiths!)

Plates and screws put in Max's skull to remodel it and help keep his new shape: $15007.06

1 Dose of pediatric Versed to prep him for a spinal tap: $429.63 (billed at a half-hour of concious sedation.)

Total Bill from the Neurosurgeon= $6137.68 (Now really, I'm not knocking the guy. I know he's very smart and very skilled. But he was only with my son for an hour!)

Total Bill From the Hospital so far= $47,382.72. We have yet to see a bill from our main surgeon, the anesthesiologists, or the radiologists. I'm betting, by the time all is said and done, we will top out around $75,000.

Really, its not as bad as it seems. The hospital bills the insurance company, and the insurance company tells the hospital there's no way they're paying $6.18 for every dose of lortab, so the bill is settled for much less than the itemized statements that I have. Plus, we have a $3,000 out of pocket maximum before the insurance company pays out at 100%. But still, its a huge bill! Tom and I can't wait for the day when Max is 16 or 17 and wants to do something dangerous like skydiving or stupid like getting a tattoo, and tells us, "It's my body, and I'll do what I want with it!" Because, um no. Between the outrageous amount of money that we paid for fertility treatments to get and stay pregnant, and the amount of medical bills we're paying now, we own him. For a long, long time!

But speaking of surgery, yesterday we reached the one-month post op mark! Woo-hoo! I am obsessively taking pictures of his head, so here's the latest, meant to show one month post surgery.

Look Ma, no ridge!

Side view. Its a little lumpy and bumpy, but everyone tells us that will even out.

And the top view. I love that the triangle shape is mostly gone. But my favorite thing is that you can hardly see his scar. A few more weeks of hair growth and you'll have to search for it. I don't care what my plastic surgeon bills. It was worth it.

Two Weeks

I'm a day behind, (What else is new?) but I want to show before and after pictures for the next few months to document Max's progress post-surgery. We're two weeks and a day post surgery, and besides a yucky cough and stitches on his head, you would never know what an ordeal he's been through the past two weeks. Everyone told us that kids bounce back fast, but we have been completely amazed. Three days after the surgery, I was doubting our decision and wondering why we put our little boy through it. But now, two weeks out, things are back to a happy normal.

One week pre-surgery

Day of surgery.

Two days post-op. You can already tell some difference in head shape.

And ta-dah! Two weeks post op! We are noticing a much rounder noggin. (We're calling it his designer head!) And now, for your viewing pleasure, more random Max cuteness.

The famous "We'll show this on your first date" picture.

Toes! (Don't you wish you were flexible enough to put your toes in your mouth? OK, maybe not, but he's pretty thrilled!)

Happy Max.

This was tonight, at Tom's nephew's wedding. I posted this to show how well his incision is healing. Once he grows a little bit more hair and the stitches dissolve, you'll never be able to tell anything happened.

And we're back...

Because apparantly, six days at Primary Children's wasn't enough for us.

Because if you belong to my family, you can't do anything the easy, prescribed or predicted way.

Because I needed another chance to realize how grateful I am for our health and our family.

Max was super fussy last night. He's such a happy kid that if he's fussing, you know something is really wrong, and he's usually easily consoled. Not last night. We didn't really think anything of it, just gave him some tylenol, then some motrin, and went to bed.

We had a miserable night. Like one of those "Why did I think becoming a parent was such a good idea?" nights. One of those nights where you're so sick of laying in bed trying to convince the baby to go to sleep that you finally move downstairs to the rocking chair, just to get a change of scenery. And one of those mornings where you cry when the alarm goes off, because you just got the baby to sleep 15 minutes before, and you just can't face a morning of practicing. (Okay, maybe the practicing part is exclusive to me.) But when Max woke up this morning, I knew he had a serious fever.

So I called our pediatrician. (You know you've been there one too many times lately when the Medical Assistant doesn't even have to ask about your kid's history...) She passed us off tot he plastic surgeon, who sent us on a "Go directly to Primary Children's, do not pass go, do not collect $200" trip. A CT scan, an IV that took 5 tries to get started, a foley catheter, and a spianl tap later, we still don't know what's going on. The good news is, its not meningitis. Its also nothing that will require another surgery. To be honest, I didn't even know that was on the table until the surgeon who was covering for the doc that did our surgery came to see us and told us how glad he was that he didn't have to re-open Max's head. I must have turned white when he said that, because he immediately said "I don't mean to scare you, but it could have been this or this" and recited a bunch of really scary things.

We actually almost got away with not being admitted. It was around 5 pm, and no one coudl really decide. I was on the fance, because while I didn't want to spend another night in the hospital, I really didn't want Max's fever to spike at 4 am sending us racing down the mountain, or to go to the pediatrician tomorrow morning and have her send us back here. They were about to let us go when they hooked him up to the heart monitor and found that his resting heart rate was in the 180s. Yup, we were benched.

But, we have found out how to have a hospital stay. Turns out, they have private rooms with showers! Its so much more peaceful here. And barring any craziness, we will go home tomorrow.

And Max is for sure grounded, as soon as he stops causing so much trouble. One nurse remarked that he was giving us all the trouble he could now because he was going to be the perfect teenager. Hope so, because he has used up his quota of worry. And he's not even six months old!

Home Sweet Home

I have never, ever been so glad to get home!

They decided to discharge us yesterday afternoon. His sodium levels were low, but stable, and the doctor in charge said that his kidneys were kicking in, and that his levels would normalize, but there was no reason for us to sit around the hospital until it did.

So after six days in the hospital, we packed up and left yesterday afternoon. It felt so good to be outside and to take my little guy home again! There is something to be said for a big long comfy couch, a fridge full of your own food, and sleeping in your own bed. I was worried that Max's sleep schedule was going to be completely upside down, but we had a great night's sleep last night, and he's been sleeping this afternoon for over four hours. I've had a couple of naps too, and its amazing to feel like a real person again.

2:01 am

Here's a fun side effect of the hospital stay that I didn't anticipate. Hospitals run on a 24 hour schedule. Nurses don't care what time it is. If its time to give meds, its time to give meds. If its time on their clock to change a diaper, well, its time to change the diaper. No one cares if the baby is sleeping.

No one, that is, except the tired mom, who now has a baby whose sleep schedule is totally messed up. He sees nothing wrong with wanting to play at 2:01 am.

Can we go home now?

Out of the PICU

Thank goodness! We made it!

We were told this morning that we were most likely going to be transferred out of the PICU today. Tom and I took a few moments to grab some lunch, and as we were heading back heard a page for us over the hospital PA. My heart dropped, thinking that there was some kind of emergency, but we got back to our space in the PICU to find our nurse had completely packed us up and we were ready to move.

Max's sodium levels are still in flux, and we're not sure when that's going to nomalize. The attending physician here wants to stop all the supplementation and see if his body will kick start on his own. I'm happy about that- I've been wondering if all the messing around and sodium supplementation is confusing his kidneys. We may be released tomorrow, or we may be here longer, but at this point, I'm so thrilled to be out of the PICU that I'm not complaining!

And he's so happy! It was like a switch flipped inside of him, and he's finally decided to rejoin he world. When I came in after shift change last night, he saw me and reached out for me, and hasn't wanted to be put down since. He's been laughing, smiling and playing with his toys, and every time someone wants to put him down, or even if I lean him back against me, he throws a fit! Last night, he was so cute and happy that I couldn't leave him, and we ended up playing until midnight!

The good, the bad, and the funny

The Good:

--Max's swelling is way down. We have had some moments of him opening his eyes just a crack to peek at us. He has some moments of being awake and aware, and seems to be much more calm than he has been.

So we've gone from this at 2 days post op

To this, 3 days post op.

-- Max's incision looks fantastic! I'm going to include a picture of it here, with apologies to the sqeamish. Its very flat to the skin, the sutures are tiny, and his hair is already starting to grow just a little bit of fuzz. Its great that one of my biggest worries pre-op (what will the scar look like) is going to be such a non-issue.

-- I have had some sleep. After 3 nights of not being able to sleep much at all, the past two nights I've been able to catch some zzzz's. Good thing because it was starting to feel a bit like night of the living dead. You know you've been in the PICU a while when a tiny closet-spaced "sleeping room" with a crappy twin bed and a wafer-thin pillow is a huge blessing.

--Max is no longer fluid restricted, which means he can eat as much as he wants, when he wants. Only being able to feed my baby 2 oz every four hours was crazy. He seems to know that he's free to eat, because two hours after his last bottle, he woke up making famliar hungry sounds and downed another 4 oz, then feel back into a milk-drunk stupor.

--I saw a lactation consultant today, and when we get released from the PICU (please, later today, please?) she's going to make arrangements to get a great big bed so that I can sleep next to him. She's going to come in and help get Max propped up and arranged so that we can go back to breastfeeding.

--Church in the Primary Children's branch. I set a new record for scruffiness at church yesterday morning when I went in jeans, a t-shirt, and slippers. And I wasn't out of place. Church was 30 minutes long: a song, a prayer, a song, the sacrament, 3 testimonies, a song, and a prayer. Hmmm. Maybe every week should be like that!

--Our nurses, for the most part, have been wonderful. Our favorite nurse, Ian is back today. He and Tom hit it off well when he was taking care of us the other night. We have traded emergency childbirth stories, swapped theories about swine flu, heard about his trips fishing with piranhas in Costa Rica, and made a whole bunch of jokes about male nurses a la "Meet the Parents." (It started when I was trying to find a pump room, and quickly deteriorated to all of us laughing about "I have nipples, Greg, can you milk me?"

--We have had a tremendous amount of support. People have come to visit, brought meals, had meals delivered, helped with blessings, and watched my girls in the playroom. I have wonderful friends and parents who have helped watch the kids, the house, etc. Its been such a blessing to not have to worry about those things and just be here.

The Bad:

--My suitcase was in the PICU waiting room yesterday (because there's no where else to put it!) and someone went through my suitcase and stole my debit card and all my cash. It was only about $15, and we cancelled my debit card before they charged anything, but still. How sick to be stealing from someone in the exact same position as you! Seriously. I'm not too worked up about it because I have so many bigger things to worry about. And I figure karma's gonna give them a big ol' bite on the butt for stealing money from someone's suitcase in the waiting room of the hospital. The funny part? Whoever it was was pretty dumb, because they didn't take my credit card, or the prepaid debit card that was there.

--We're still in the PICU. Sodium levels haven't yet normalized. Just got word we're here another night, and in the hospital until Wednesday at the earliest. This seems to change almost hourly, so we'll see what happens from here. The attending here is confused, all the other attendings are confused as to why this is happening. For me, I'm not surprised. Leave it to us to have a bizarre complication that no one can figure out. (Where is Dr. House when we need him?!)

--Cafeteria food. Blah. Thank goodness for friends that are bringing us food.

The Funny:

-- I'm pumping breastmilk around the clock. Primary's is very breastfeeding friendly, and there are pumping rooms all over the hospital. The funny part is that the collection cups they give me are urine specimen cups. I now have a pink bucketful of little urine specimen cups filled with frozen breastmilk.

--The interaction between the residents, interns, nurses and doctors is very funny to watch. It makes me laugh to see the nurses tell these brand new doctors what they should do. I wonder if the nurses ever get frustrated that they know more than the doctors, and yet the doctors get the recognition, and the prescription pad.

--And the funniest?

I found Max's finger like this this morning. Shows you how he really feels about all of this.

The PICU

When we talked about the recovery from surgery with the doctors, the plan was for a night in the Pediatric Intensive Care Unit as a precaution, then we would be to a regular floor the next morning. Things haven't quite gone as planned, and we're still in the PICU, and will be for at least one more night. As part of their monitoring, they monitor his sodium levels. Sodium regulation is a function of the pituitary gland, and low sodium levels can lead to problems with seizures, etc. Normal sodium is above 135- he has fluctuated from 130-134, never quite reaching 135. Yesterday at noon we had transfer orders written, and then pulled when they realized he was only at 134.

After further testing yesterday they found out he has something called "syndrome of inappropriate antidiuretic hormone." Yeah, I can't say it either. (Neither can some of the Docs and nurses. That's really quite funny!) According to Wiki, SAIDH is:

The syndrome of inappropriate antidiuretic hormone (SIADH) is a condition commonly found in the hospital population, especially in patients being hospitalized for central nervous system (CNS) injury. This is a syndrome characterized by excessive release of antidiuretic hormone (ADH or vasopressin) from the posterior pituitary gland or another source. The result is hyponatremia, and sometimes fluid overload.

Clear as mud? Yeah, me too. Basically what we're doing is restricting his intake to force his body to release the extra fluid. And waiting, waiting, waiting for his body to correct itself. Initially, we thought it might be a quick process, and kept waiting for word that we would be released from the PICU, but it seems like it may be a longer process. We're told its a rare complication (Somehow, that doesn't surprise me!) but that its not threatening, just something that they have to keep close watch on. Thus, another night's stay in the PICU. We're not sure what that does to our overall hospital stay time. Originally, we were hoping to be discharged tomorrow, but there's no way that will happen now.

Max is super swollen today. His body seems to be doing better, in fact, everything except his face is back to normal, which is fantastic. His eyes have swollen shut, which we expected, and they are starting to look black and blue. He's super irritated today, and frustrated that he can't open his eyes, plus I think he's hungry because he can only have just over two ounces of breastmilk every four hours. Luckily, we're keeping on top of his pain meds, and I'm hoping he'll keep sleeping peacefully as long as possible. Everyone that I've talked to whose kids have had this surgery says that once the swelling peaks, it starts going down pretty fast. I'm hoping we're reached the peak- I can't imagine his poor face being more swollen than it is now.

They did remove his turban bandage today, which is exciting. I teared up to see his new forehead- its completely flat! The swelling is distorting his new look, but we can already tell a difference in the way his eyes look.

There's no way to describe what its like here. Never in my wildest dreams did I think I would be here with a child- its very surreal. The PICU is an open pod, with curtains to offer an illusion of privacy. But there's so much going on, so many doctors, nurses, technicians and procedures, that everyone immediately around knows everything that's going on with the kids. To the left of us is an almost 2 year old with unexplained seizures. To the right of me is another 5 month old baby that just had open heart surgery. Its a place of big stimulation: alarms, wires, bells, babies crying, pages over the intercom, etc. I have a rocking chair to sit by his bed, and there's "sleeping rooms" which are basically small closets with a bed that we request each night. There's a nurse for each patient, so he's monitored very closely. Lortab every four hours, feeding every three to four hours, sodium levels every four hours. Breastpumping every 6 hours or so. And waiting. Lots of waiting.

On the other side!

We made it! The surgeon came to talk with us about 5:45, and we were able to be back to see Max about 6:30. He's resting in the PICU now. It was a little tough at first because it took a little while to get a good balance of pain meds on board. But he seems to be comfortable now. If his labs look good in the morning, he'll be released to a regular floor tomorrow sometime.

I've included some pics with this post, but the ones from the PICU aren't so pretty. They're not bloody or gruesome, but they're pretty real. I'm just warning you.

Getting checked out before the surgery.

The "before" picture- you can really see the triganoncephaly here- notice how his forehead comes to a point? That's what the surgery is going to correct.

Playing with Dad, and waiting. (And waiting, and waiting.)

Just out of surgery, in the PICU.

Finally, I get my baby back! His eyes are only open for a few seconds at a time, and he's pretty sedated, but it was wonderful and healing to be able to hold him again.

The Waiting

Max is in surgery, and Tom and I are camped out in the waiting room. We've created our little nest, and we're trying to keep ourselves occupied. We've visited with other parents, took a walk, ate some lunch, and we're still waiting. We probably have another hour and a half or so before he's out of surgery, then another 45 minutes to an hour after that before we can see him in the PICU.

So far, everything is going as expected. The bronchosopy was done quickly. Our ENT, who I really like, was replaced by a doctor with absolutely no bedside manner. He was very condescending and I was glad that 1) he wasn't our regular doctor and 2) that his part in the surgery was so minor. The neurosurgeon is also done with his part of the surgery, and said that everything has gone well. The nurse calls from the OR every hour and a half, but all she tells me is that his vitals are good and that things are "moving along." He has had a blood transfusion, although she couldn't tell me how much.

Things this morning went as well as could be expected. Max was sweet and happy, and only started getting visibly frustrated just before they took him for surgery. He was so hungry, and just couldn't seem to understand why I wasn't feeding him. A sweet child-life specialist bought us about an extra half hour by giving us some bubbles to blow for him.

Giving my baby to the anesthesiologist was the hardest thing I have ever done in my life. Neither one of us were prepared for the flood of emotion, and I still don't think I'm ready to talk or blog about it. The only way I'm making it through is by not thinking of it in too much detail.

I'm glad everything is going well, and I'm glad that it will be over soon.

And I can't wait to see my baby.

The Night Before

If I were creative, I would blog all my pre-surgery thoughts and worries into a poem a la "The Night Before Christmas." Something about the night before surgery and everyone tucked into their beds with visions of scalpels... Nah. I'm too tired, and it would be too morbid.

So instead, I'll blog about how my sweet boy is snoring softly in the bed next to us. And how Abby and Ashlynn weren't the least bit sad to be dropped off at Grandma and Grandpa's house, and didn't even insist on giving us a kiss goodbye. And about how not only is tomorrow surgery day, but its also my birthday. And I'll tell you how my husband gave me a whole bunch of boxes of Macaroni and Cheese wrapped up as a birthday gift because of an old family joke, and how we laughed and laughed about it. (That wasn't my only birthday gift. He bought me a laptop a few weeks ago, and gave it to me because he didn't want me to have to wait to use it.) The fact that I'm turning 31 may have to wait for another blog post. Although I think 31 is a strange birthday. I'm officially "30-something." I remember my parents watching that TV show when I was growing up, and wondering what was so interesting about being 30-something that you wanted to make a whole tv show about it? But you know you're a grownup when you don't care that its your birthday, you just want surgery to be over and to have your baby back in your arms.

I'll blog about how Max thinks its really funny that his hospital bracelet is attached to his ankle. He already thinks that his toes are the most fun toy ever. And now there's something attached to his foot that's fun to play with! And I'll blog about how hard it was to hold him down while they drew his blood tonight, but how I know that pales in comparison to what he's going to go through tomorrow. (Although I'm taking solace in the thought that at least he'll be under general anesthesia when they put in the IV's.) And I'll blog about how I'm really tired, and I should be sleeping, because its going to be a really long couple of days coming up.

CVR/FOA

The surgery Max is going to have is called a Cranial Vault Remodeling with a Frontal Orbital Advancement. While in the middle of some late night research, I came across these drawings and descriptions that help better explain the surgeries.


CVR (Cranial Vault Remodeling):
This procedure takes off a portion of the skull on the top and front/sides. The surgeon then cuts and manipulates the skull so that it is placed back on in such a way that the brain has room to grow and cosmetically looks better. Where the skull is cut depends on which suture is fused. Metopics (like Max) ususally have the skull cut in front of the coronals so that they are not affected.





FOA (Frontal Orbital Advancement):
This procedure is often done at the same time as a CVR. I have never heard of a FOA done without a CVR. The FOA is done to help correct the brow line, which is often smaller than it should be. The brow line is misshappen or smaller than normal due to the type of cranio that has affected it. Metopic kiddos have a "V" shaped browline that is too small...this is from the fused metopic suture keeping the brow line from growing at the normal rate. The FOA procedure makes adjustments to the brow bone so that it is the correct size for the child so that it protects the eyeballs in the orbital socket. Also, it provides a more accurate "look" for the child...the way he/she was supposed to look. Surgeons do often over-correct this so that the child can "grow into" the new brow line. This is because the growth usually does not continue at the same rate needed for the overall outcome when the child is older.

Surgery is a week from Friday... I'm trying to keep breathing.

Surgery Orientation

Shortly after Max was scheduled for his surgery, I got a cute little postcard in the mail from Primary Children's Hospital. It had happy pictures of kids on it and cheerfully proclaimed "Come to our pre-surgery class!" Who knew there was such a thing? Basically, it was a orientation to surgery- a way to talk with the kids who were going to have surgery so that they would know what to expect. Now of course Max isn't old enough to know or to care about hospital procedures and protocols, but being that his mother is a nervous wreck about the surgery and has more questions than a three year old typically asks in a day, I decided to take advantage of the class. Although his surgery is a little more than three weeks away, its Spring Break and I have no lessons, and this was probably the only afternoon available between now and the surgery date when I could make it down to the hospital yet again.

There's something ominous about a class full of parents and children about to undergo surgery. There were four families there, and we instantly started chatting about our kids in a way reminiscent of inmates: "So, what are you in for?" And although no one would admit it, we were all mentally sizing each other up, placing ourselves and our kids in a worst to best sort of way. There was the woman who was in with her four year old son who needed a hernia repair who would be in and out the same day. Then there was the woman whose daughter was having a scar revised after she was hit by a car and drageed for 100 feet, leaving a huge gash on her head. When it was my turn, I explained that Max was having a skull revision. (The technical name for his surgery is a "cranial vault reconstruction with a frontal orbital advancement." Doesn't that sound intimidating?) The other two women were horrified that a little baby would have to go through such an extensive surgery. I was having a little pity party for myself and my little boy when the woman in the corner told us that her 12 year old was having brain surgery. Her daughter was having seizures, and they were going to open up her skull and attach EEG electrodes to her brain. The girl would then be put on strict bedrest for weeks in the hospital while the doctors provoked seizures and mapped them in her brain to find where they were coming from. then after everything was sufficiently mapped and figured out, they would remove and repair the part of her brain that was causing the seizures. Gulp. After I heard that, I realized that I was thankful for what I had been given.

Being in a children's hospital is a surreal experience. They showed a cutsie video to prep the kids for what they were going to experience. It was completely focused on the fun things: "Look! You get to ride to the Operating Room in a wagon!" or, "Oh, there's pictures on the ceiling!" and "Oh, your mask that gives you medicine smells like bubble gum!" All the while I'm thinking, "That's where they're going to take my baby." and "That's where I get to wait for hours and hours and pace holes in the floor while I wonder if everything is going okay." ond, "That's the great big IV they're going to put in his little tiny body."

In all seriousness, I'm betting that as hospitals go, Primary Children's is a great place to be. With the exception of the radiology department (and that's a whole different post full of ranting!) we have had mostly good experiences there. Everyone has been very kind and they do seem very attuned to the needs of the children. But there's something about walking the halls of the hospital with the "Child Life Specialist," and hearing her describe all the perks of the hospital as if I'm a potential recruit touring a college campus that makes me want to turn and run the other way. I'm glad for the little things like that they have a huge playroom; I'm glad they give free zoo passes to families of kids in the hospital. I'm glad for the bigger things like that they have breast pumps and breastmilk storage facilities that they bring to every room; I'm glad that they bend over backwards to provide accomodations for parents. And I'm very glad that I have a laptop and they have wireless internet access. But seriously, I can't be the only parent that wishes that I could be put to sleep when my baby is and wake up when he's completely recovered, can I?

A shout out...

I'm a big research fanatic. I spend lots of time researching and reading things that interest me. So since Max has been diagnosed, I've been puring over the internet, trying ot find out everything I can about his condition and about the upcoming surgery. A few days ago, I stumbled onto craniokids.org and have joined the support board there. The women there are remarkable, and its been amazing to read the stories of other moms and babies who have had this condition and see thier progress through surgery, treatment and beyond. So here's a shoutout to my new friends reading this blog from Craniokids! I'm glad that you're here, and glad for your support. I'll be keeping this blog updated as Max progresses through surgery next month, so feel free to check back often. And please comment so I know you're here!

There's bad news, good news, and more good news

The bad news is, I got a stack (and I mean a stack!) of those "Explanation of Benefits" papers in the mail on Saturday. Yeah, medical care is expensive. We're talking $200-$300 per consult and $400-$600 each for the ultrasounds, swallow studies and scopes that we've had done. Gulp. We haven't seen the bills yet, but we now know how much they'll be for.

So the good news is that Max has already met his deductible for the year and then some. So everything having to do with the surgery will either be covered at 80% or 100% depending on how soon we reach our out of pocket maximum. And really, thanks heavens for AFLAC, (yes, the one with the annoying duck) because the policy we took out for Max will cover all of this once the surgery is done.

Another observation from the stack of EOBs? I should have been a radiologist. Seriously. There were 3-4 claims for Doctors that we have never seen. Turns out they were radiologists. Doctors that never have to see patients- they just sit in their offices, read xrays, ultrasounds etc, send a report, and then charge amazing amounts of money to do it. I need that job!

We had three Doctor appointments last week- one with the ENT clinic, one with the pediatric opthomologist and one with our pediatrician. We had another endoscopic test done, and they are so not pleasant (for me, and especially not for Max!), but the official word from the ENT and the speech pathologist is that we are cleared to resume "normal breastfeeding!" (Not that we have been doing anything but normal breastfeeding for a while now- its just good to be able to stop worrying about it!) The medication seems to be helping the swelling in his throat, and although things aren't normal yet, we're getting there. We also have a referral to the (wait for it...) GI clinic to see a gastroenterologist (Woo-hoo! Another specialty to add to our list!) because it turns out that reflux can be caused or exacerbated by constipation. Who knew? (Someday, Max is going to be so thrilled that I have the details of his pooping problmes posted all over my blog!)

Everything at the opthomologist was fine. No evidence of increased intercranial pressure, and everything is symmetrical with his eyes, so we're good to go as far as he's concerned. And at the pediatrician, we found out he's almost 15 pounds, 24 inches long, still has a little bitty head, and is right on track for his milestones. Go Max, go!