You can't come back from this

My house is a disaster.  An epic disaster.  You know, I hear you in the background saying "Yeah, you should see my house."  But you don't understand.  I can't even post pictures because then CPS and the health department will have evidence against me when they show up at my door.  And I can't find my machete to hack a pathway through to where ever the camera may be hiding.

There is a baby's tennis shoe in my bathtub.  And a peri bottle, a package of cough drops, a few used kleenexes, several bath toys, and I don't know what else.  I'm too scared to look. 

There's an unidentifiable stink coming from the garbage can.   Make that several two garbage cans. 

I have two baskets crammed, stuffed full of clean laundry.  My dryer might also be loaded with clothes.  And I may or may not have had to rewash a load of laundry this morning because it had sat in the washer for two days because I couldn't empty the clothes out of the dryer because there was no more room due to the mountain I've recently named "I don't wanna fold clothes" taking up all the room. 

My girls may or may not have worn the same jeans three days in a row due to the aforementioned mountains of laundry. There's no visible dirt, so its okay, right?  They do have on clean underwear.  I hope.

There is a broken cabinet door in my kitchen where, in a fit of frustration, Max broke the door off because he couldn't open the cabinet because of the childproof latches and proceeded to hang off the door until the hinge broke.

The floor of my entry way downstairs crunches when you walk on it.   It has approximately 27 shoes (none of them matching of course,) a bag of dirty clothes waiting to got to the dry cleaners, and mail from the last three days scattered all over the place.

You don't really need to change the sheets on your kids' beds do you?

There are alphabet blocks in every room of my house.  Somehow 26 alphabet block multiplied when we were all asleep, and I can't walk two steps without stepping on one of them.  They are on every stair in the entire house since the baby boy finds great delight in standing at the top of the stairs and throwing the blocks down, one by one.

Despite the fact that I know we have mopped the kitchen floor this week, there are stains in every color and shade of the rainbow all over the floor.  That flourescent orange blotch?  Yeah, its from when Max decided to empty all the leftover mac and cheese out of the garbage, flinging it all over the room, all because I had the audacity to take 30 seconds to pee.

So really, I don't think there's any way to come back from this type of disaster.  I'm pretty much thinking that we should just demolish the house and start over.  In the meantime, I'm ignoring it.  I'm gonna just sit here, in my pajamas, eating my townhouse crackers with cheese, drink my Diet Coke and watch last night's Grey's Anatomy on my DVR.  And as long as I don't see any animals running around that don't belong to us, I'm gonna call it a happy day.

Murphy's Rules of Parenthood

If your baby has an appointment with his or her pediatrician, the day before said appointment, your child is  guaranteed to fall on something and give themselves a huge shiner, along with a great big scrape on the chin.  You know, so you can stand in front of your pediatrician stammering "He fell and banged his eye, I promise!" all the while feeling like a complete moron.

First Birthday

A year ago, I gave birth to my little boy in a big tub upstairs in my bedroom.   A year later, two surgeries, (with one more to go!) an ambulance ride, four ER visits, and countless doctors and specialist appointments later, he's turned into a little person who has taught me more about miracles, patience and strength than I ever thought possible. 

We joke about Max being trouble right from the start.  It took us two years, three cycles of fertility drugs and being told that I was certainly going to miscarry him, then two days of labor to get him here.  He was born with his cord wrapped around his neck three times and had to be fully resucitated.  When he was two months old, I was told to stop breastfeeding or we were risking pneumonia from aspiration and permanent lung damage.  Ten months later, we are still breastfeeding multiple times a day with no end in sight. He went through a major six hour surgery and then survived the resultant five days in the PICU, and the hospitalization with the flu a few days afterwards.  We made it through another minor lip surgery, the swine flu, and all the normal bumps, bruises, and parties in the toilet water common to toddlers.  He's a miracle baby, and we fully expect that there's at least one more miracle in his future when we go through one more surgery.

Happy Birthday little buddy, I love ya!  And if possible, could we make the second year a little less dramatic?  Thanks.

Its a Dirty Job

So why do I have to do it?

Ew.  I don't want to gross anyone out, so I'm not going to tell anyone about how in this week I've...

~ Unclogged the basement toilet twice.  ("Poop soup!" my six year old gleefully exclaims!)  This was made worse by the fact that it happened first thing in the morning, and as previously explained, I have a firm belief that not much good happens before 9am.

~ Cleaned up cat poop from the carpet after I almost stepped on it.  Once again, mornings+bleary eyes= grossed out, annoyed mommy.

~ Learned that soybeans and corn make for really, really stinky diapers.  Like clear out the house stinky, or wondering when we can start potty training stinky.

~ Been covered more than once in slimy, snotty baby kisses.  (OK, that's probably more cute than gross, or maybe its one of those "only a mother could love" kind of things.) 

Decisions, Decisions

Well, at least the decision is made. That's the best thing I can say about it...


We consulted via phone with Dr Fearon, the craniofacial specialist on Monday. He was very kind and very thorough. He said that in his opinion Max was definitely in the range of moderate trigonocephaly, (the triangular shape to his head when viewed from the top down) and in his opinion, there was no question whether or not another surgery was warranted. He said that although there's been no formal study that links abnormal skull shape to problems in the child's development, his opinion is that if there is pressure on one part of the brain, the brain will noe be able to develop properly. He also said that the "purely cosmetic" argument is completely false and made by surgeons who don't do enough craniofacial work, because an abnormal skull shape can affect a child's physical, intellectual and emotional growth.

So Wednesday, we went back to the hospital to meet with one of the surgeons here. When we met with him about four months ago, he told us that a second surgery was an option, but that it would be our choice whether or not to pursue it. When he saw Max Wednesday, he said almost the exact same thing that Dr. Fearon  had said- that he was now in the moderate category and could benefit from significant correction. So after talking with this Dr, and peppering him with a million questions, we've decided to stay here in Salt Lake City and schedule the surgery with him sometime after the first of the year. He's done hundreds of these surgeries, and lots and lots of them have been secondary reconstructions, and Tom and I both feel like we can get really good care here without having to travel. Plus, we won't end up having to fight insurance companies, and can use our support system here. We'll have a surgery date soon, and we're expecting it to be early 2010.

Tom is totally on board now too. I think there's something about hearing it from the doctors that made him believe that I wasn't being completely crazy. It feels a lot better to have us on the same page.

Unfortunately, after we left the doctor's office, all I wanted to do was cry. I can't believe we have to go down this road again with my sweet boy. In some ways, its going to be so much more difficult this time around, because we already know what to expect. And I can't imagine what it will be like having a walking, talking toddler who is swollen and feeling miserable! Seriously. I have to stop myself, because if I think about it too much, I want to firebomb my original surgeon's office, and that's probably not a good idea. I look at photos of Max and realize we're making the right choice, but that sure doesn't make the prospect of an entire extra surgery any easier!

Baptism Day (and a little holiday called Halloween)

I've been sitting contemplating this post, staring at the blank blogger screen for twenty minutes.  I'm not sure I have the words to describe the emotions of Abby's baptism day.  Words like amazing, fantastic, spiritual, momentous, all fall short and sound incredibly trite.  As much as it was a milestone for her, it felt like a milestone for us as parents as well.  As I was helping Abby get dressed for her baptism, I flashed back to night after night spent in the rocking chair, singing primary songs, and silently willing her to sleep.  I remembered the constant nursing, the tears (hers and mine!), the times I wondered what I was thinking becoming a mom because I obviously wasn't cut out for it.  The moments I spent with her yesterday, being her mom, helping her dress, brushing her hair, silently crying with joy as I watched her make a decision that will shape her life, felt like the reward for all the hard moments that came before. 

Abby was so happy- she spent the whole day literally glowing.  We were fortunate to have Tom's mom, sister and brother in law fly in for the baptism.  It was a great moment to look down the row in the chapel and see our family lined up, just because we don't get that very often.  We even hosted a luncheon at the chuch afterwards, because there were too many people to fit in our house.  (Now those of you who have been to my house know that it doesn't take much for it to be too many people, but it meant a lot to all of us to have a big crowd to celebrate with us!)

Abby, Ashlynn, and their friend Katelyn

Abby couldn't resist spinning (and spinning and spinning) in her new baptism dress.

                                  Uncle Mark, who also did Abby's confirmation

Oh yeah- It was also a little holiday last night!  Halloween!  Abby thought it was the coolest thing ever to be baptized on Halloween.  It was like we had engineered the whole thing just for her.  Ashlynn even asked if she could have her baptism on Halloween.  So after a big lunch and a much-needed nap, Tom and the girls headed out trick-or-treating while Max and I manned the doorbell.

He stood at the door and shrieked at everyone who walked by. 

Then, when I wasn't looking, he escaped out the door and started almost running down the street.

Abby and Ashlynn wanted to be angels for Halloween, and Kate was the bridesmaid.  They trick-or-treated together the whole night.

My little Angels and demon...

Dragging my feet

If you're tired of reading about our medical dramas, feel free to skip this post.  I won't be offended.  (Sometimes I get tired of reading about my medical dramas!) 

I'm living in denial.  Everything around here has been going so smoothly.  Max is doing brilliantly- he started climbing stairs, walking and signing all in one weekend.  He's smart, adorable, and learning new things every day.  Besides my bout with the swine flu, we've been remarkably free of hospitals and doctor visits.  And that's part of the problem. 

Ever since the swelling started going down from Max's initial surgery, I've been questioning the results.  We sought a lot of opinions, and after talking with a bunch of doctors and each other, we decided that the very soonest we would pursue another surgery would be after the first of 2010, giving Max enough time to heal from the first surgery, and us plenty of time to research and make a good decision.   If we decide to stay in Utah for surgery, we've decided on the surgeon we'll use.  We met with him in July, and agreed to arrange a follow up appointment in September to determine for sure if surgery would be necessary. Yeah, good thing its the end of October.

I am so conflicted.  I really, really don't want to put Max through another surgery.  The surgery and the week in the PICU that followed was one of the hardest things we have ever been through as a family.  Its difficult for me to even write about it, because of all the emotions that surrounded that time.  One of the only things that got me though the whole process was that it was supposed to be a one-time procedure.  Thinking about doing it all again fills me with equal parts anger, dread and sadness. 

A second surgery is even more risky than the first.  We eliminated one surgeon here in Utah because despite all his craniofacial experience, he had never done a secondary reconstruction, and I'm not about to let him practice on my son.  It once again involves shaving his head, five-six hours in surgery, and almost a week in the hospital for recovery.  Because of our history previously with SAIDH, we're at higher risk of repeating those complications.  Yes, Max recovered quickly, and was acting completely normal within two weeks, but with a surgery like this, there's never a guarantee that everything will turn out as well the second time around.

The conflict comes because as far as we know at this point, a second surgery would be considered purely cosmetic, meaning it would be only to improve his appearance.  While craniosynostosis carries with it some risk of intercranial hypertension and other problems, the original surgery freed his fused metopic suture, and as far as we know, this surgery isn't medically necessary for his health/brain function/eyesight etc.  So on the one hand, the surgery has been recommended by everyone we've talked to to improve his appearance.  On the other hand, we're talking about putting our baby boy through another long, painful, and potentially risky surgery.

And that's the hard part, because my husband and I have completely different opinions about what we should do.  I think we should do the surgery.  While there are risks with every surgery, craniofacial surgeries are pretty darn safe.  This correction would give him the best chance of having a "normal" facial appearance.  I feel terrible for saying things like that.  I think Max is absolutely adorable, and would, of course, love him no matter what.  But people are cruel, and its hard enough to grow up when you look perfectly "normal."  The goal with another surgery would be to broaden and flatten his forehead, advance his browline, and increase the space between his eyes.  We have a limited window if we're going to do the surgery- its definitely something we would need to do sooner rather than later.  There's a number of reasons for that- the younger he is, the less likely it is he'll remember it, the more pliable the bone is, and the better the correction holds.   As I've been obsessing over his head shape for the months since his surgery, I've noticed the triangular shape becoming more and more pronounced once again, and there's really no way of knowing how bad its going to get.  And although I really don't want to put Max through another surgery, I also don't want him to feel self-conconcious about the way he looks his whole life and be angry or resentful of us because we didn't do something about it when we had the chance.

Tom's view is the opposite.  He thinks we should leave well enough alone.  He thinks Max is perfect the way he is and doesn't want to risk another surgery.   He doesn't want to put him through the pain and drama of another surgery when there is more risk to Max and when there's no guarantee that he'll look better than he does now.  His reasoning is that we wouldn't put our girls through an expensive or risky cosmetic procedure just to improve their appearance, and we shouldn't do it in this case either.  When I brought up the concerns I have about his appearance, Tom argues that there are a lot more important things than appearance, and that Max's charm and personality will will people over and he won't even need to worry about having a perfectly shaped head.

I don't even know how we're supposed to make this decision, especially when we're on such opposite ends of the spectrum.  So we're going to set up another meeting with the surgeon here, and a phone consultation with the doc in Texas.  We're going to arm ourselves with a big list of questions, find out pros and cons, define "medically necessary," then we're going to do some major fasting and praying.   And I'm going to stop dragging my feet and make some phone calls starting this week.

I wish there was some other way to do this besides going straight through it...