Saturday, May 30, 2009

Even If...

Even if you see a purple monkey flying past your windshield with flames shooting out of its butt as you're driving down the freeway, don't point it out to your kids. They won't see it!
Its kind of like how you're not supposed to try to teach a pig to sing, because it wastes your time and annoys the pig. Yeah, just never try to point out interesting things that are happening outside your van windows as you're driving down the road. Complete and utter chaos will ensue, followed by tears, cries, and general hysteria. Much better to watch the purple monkey, marvel at the pretty flames, and let your kids continue poking each other in the back seat.

Friday, May 29, 2009

Choosing Joy

You need to go read this post. Now. Today. Its inspiring, profound, and will change your day.

Thursday, May 28, 2009

I'm a geek

I was getting Max to sleep tonight and stumbled upon the National Spelling Bee. I didn't intend to get sucked in, but who can resist when people are not only pronouncing, but spelling words like humuhumunukunukuapuaa quickly sucked me in.

I remember being in our school spelling bee when I was in 5th and 6th grade. My mom and I spent hours going through a list of bizarre unpronounceable words and memorizing them. I can't even remember how I placed, but needless to say, I didn't make it very far.

And to prove my ultimate geekdom, I watched the whole thing. Right down to the winner, who spelled "laodicean" to win $40,000 in cash and prizes. And in the nearly two hours of unpronouncable words, I think I only recognized two words. But I feel kind of smart for watching it. (It might be a little like how you feel thinner because you watched "Biggest Loser.")

Wednesday, May 27, 2009

Those Who Say...

"If your baby is old enough to ask for it, he's too old to breastfeed," have never watched my six month old son, Max. Once you see him sucking on my arm, neck, chin or nose hard enough to give me a major hicky, headbutt himself into my chest, pull down my shirt, or start arching his back in a desparate attempt to get into "nursing position," there's no doubt that he's asking to nurse. And at six months old, no one is going to tell me he's too old to be nursing. And you know what? Even if he was 18 months, 2 years or older, and could clearly articulate verbally what he wanted, he still wouldn't need it any less than my six month old.

Sunday, May 24, 2009

Home can be...

There are some moments when being a mom is filled with hilarious contradictions. Like today, sitting in church. The opening hymn was "Home Can Be a Heaven on Earth." I was simultaneously singing and trying to keep Max from shoving the hymnbook into his mouth, when I heard a horrible screeching noise. I looked to my left to see Abby laying on top of Ashlynn, both of them sprawled across the bench, dresses up around their waists, looking like a piar of mud wrestlers in fancy dresses. (I sure hope they were wearing their clean panties, because they were showing them to the whole ward!) Abby's hair was fanned around her head in a static-y mess, and Ashlynn was looking like she was about to erupt.

"Knock it off you two!" I hissed, shooting what I hoped what was a sufficiently stern look. Then I went back to singing, determined to show what an exmaple of spirituality I was. The next words in the hymn were "Parents teach and lead the way, children honor and obey..." It took me until the end of the hymn to stop laughing.

Thursday, May 21, 2009

A Day in the Life

6 am: Max is squirming, grunting and kicking me. I try to reposition him so that he'll go back to sleep. No dice. He opens his eyes, sees me, and gives me a big grin. That's ths sign that he's up for the morning, 15 minutes before the alarm goes off at:

6:15 am: Ignore alarm and try to go back to sleep. Kicking and cooing baby convince me that its time to get up.

6:22 am: Stagger out of bed bleary eyed. Call Abby upstairs to get dressed. Smile at the baby playing happily with his toys. Flop back down in bed rationalizing to self that it will take the seven year old a few minutes to find the perfect outfit, and why should I spend those moments upright if I have a choice?

6:37 am: Fix Abby's hair, then time for breakfast. Do toaster waffles count as a complete breakfast? They do today.

7:15 am: Violin time. Not bad today. Only one round of tears, provoked by a fourth finger shifting excercise. The last 15 minutes is punctuated by repeated pleadings to focus on the dynamics in the minor section of the Bach Bouree.

8:25 am: Send Abby off to school. Max is ready for morning nap. Bottle with meds, rocking chair, half hour of nursing. Max is fast asleep, until:

9:07 am: The inevitable phone call wakes up the baby. Cue 20 more minutes of nursing and my daily fix of "The Price is Right."

9:30 am: Baby is successfully sleeping in the crib. Steal some internet time. It'll just take a second. Yeah, right.

10:20 am: Must. Take. Shower.

10:40 am: Shower concludes. (Yes, it was long. I was escaping!) Max has decided he's done napping. Mom, however, doesn't agree with this and lays down to nurse him, hoping he'll fall back asleep.

11:00 am: Mom gives up. Max is smiling, giggling, and shoving his fingers in my mouth. I need to get ready. I get dressed, blow dry my hair and entertain Max, who despite what he thinks, needed to sleep much longer.

11:20 am: Stock diaper bag, pack lunch for Abby. Brush Ashlynn's hair. Feed Ashlynn lunch. Change a diaper. Pack violin, concert costume, concert shoes, and Diet Coke in the van to be the the school by:

11:45 am: Pick up Abby from school. Drop Ashlynn off at a friends house so she can get to kindergarten. Head down Parley's canyon for a Doctor's appointment at:

1:00 pm: Max's surgeon says he looks great and that we don't need to come back for six more months. The incision is healing very well, the lumps and bumps should fade within a year's time. Funny moment comes when Abby picks up a scrapbook of the surgeon's "before and after" pictures, and mom realizes that along with being a craniofacial surgeon, he is also a plastic surgeon, and its an album full of boob job pics. We are out of there by:

1:30 pm: When we head to the bank, calling the health insurance company on the way to check on a reimbursement claim sent 6 months ago. Can't get too mad at them, because they're the ones that need to pay the 60k or so from Max's surgery. Drop Abby off at a friend's house who also takes lessons from her teacher so that friend's mom can take her to group class so at

2:30 pm I can go racing back up the canyon to be home by:

3:20 pm to nurse the baby and teach 3 violin lessons, nurse the baby again and leave the house by:

5:30 pm to go to Park City to pick up my husband from work, grab a quick dinner from Arby's and head back down the mountain to Abby's spring violin group recital which starts at:

7:00 pm when we listen to the concert and try to entertain the 6 month old baby and the 5 year old sister. (I'm not sure which was harder!)

8:05 pm: Concert finishes, and we proceed to Dairy Queen for post-recital ritual and then once again, head back up the canyon. This prompts utter hysteria from Max, which results in the "extreme breastfeeding" written about in yesterday's post.

9:30 pm: Home. Finally. The girls, who fell asleep in the car, stagger upstairs to bed. Max has to be convinced first, that he doesn't need to wake up the entire neighborhood and tell them about the injustices of carseats, and second, that the world really isn't crashing down around him. Collapse in bed next to him and nurse until we both fall asleep in an exhausted stupor.

By the Numbers:

221: Number of Miles driven in one day. (We could have made it to St George!)
2: Number of complete trips down and back up Parley's canyon. (I think I could navigate it with my eyes closed at this point!)
40: Number of minutes of hysterical crying from Max. (He hates the carseat!)
2: Number of times Abby changed her clothes in restrooms.
2: Number of Diet Cokes I've had today.
17: Number of times I wondered why I thought having a 7 year old violin prodigy while living 45 miles away from her teacher was a smart idea.
18: Number of times I heard the song "Gives You Hell" by the All American Rejects on XM radio while driving. (214 channels and there's still nothing unique on the radio! But at least it was an appropriate song for today.)
3: Times I wished I had a helicopter and a pilot's liscense.

And the best part about it all? Abby has to be at her teacher's house at 7:20 am for a school concert tour in the morning. She'll perform at 3 schools, followed by, you guessed it, a violin lesson. Sigh. I need a nap. One that lasts at least until Sunday.

Wednesday, May 20, 2009

Extreme Breastfeeding

Extreme Breastfeeding: (n) The act of contorting your body in such a way that you can breastfeed and comfort your hysterical infant while he is still in his carseat and your husband is driving up a canyon at 80 miles and hour. Warning #1: bruising in strange places may occur from bending, twisting and leaning over the carseat. Warning #2: Your nipple may never be the same.

Sunday, May 17, 2009

A 3- year old's view of breastfeeding

My husband's cousin's daughter was over this afternoon when Max woke up from his nap. We curled up in our favorite chair to nurse, and Kylie came over, curious as could be.

"Is your baby sleeping?"
"No," I said, "He's awake. He's eating."
"How is he eating?" she asked. "He looks like he's sleeping."
Hmmm. I thought. Maybe I better ask before I educate other people's kids about breastfeeding. "Steve!" I yelled to her dad in the kitchen. "I'm going to tell Kylie about breastfeeding." I don't think he believed me, because he just shouted back "Okay." So our conversation continued.
"He's drinking milk from my breasts." I said.
"He's eating you! He's eating your body!" Kylie shouted, alarmed.
"No, he's sucking on my breasts, and that's how he gets his milk."
"But he's eating your breasts!"
"No, my breasts make milk for him to drink and that's how he gets it out."
"Why?" She asked. (I've forgotten about 3-year olds and this question, obviously, or I probably wouldn't have started this conversation.)
"Well, babies drink milk. So my body makes the milk he needs, and then he sucks on my breasts to get it out."
"Why?" (Sigh. At this point, I'm really, really glad my kids have grown up with breastfeeding and don't question it as normal.)
"Because that's what our bodies do."
"Oh." That explanation seemed to satisfy her for a few minutes. I gave myself a little mental pat on the back for giving a good, age-appropriate education about breastfeeding. A few minutes later, I realized I wasn't as smart as I thought I was. Her mom and dad were in the room and Kylie came running up to me and started patting my belly.
"Is there still milk in there for the baby?"
Kylie's mom and dad's eyes looked like they were about to pop out of their heads and roll around on my living room floor.
"Steve," I said, "I warned you I was going to tell her about breastfeeding."

Saturday, May 16, 2009

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.

Thursday, May 14, 2009

Its all in your perspective

My beautiful, musically gifted daughter Abby left her violin at group lessons yesterday. I was pretty irritated because I had told her to get her things and go get in the van when her lesson was over. Instead the girlies went in the backyard to play which is where she left her violin. Good thing we live 45 miles away. So we had a discussion about responsibility and obedience, and went on our way.

Lucky for her, she had her regular lesson today, so the only thing we were out was a day of practicing. This morning, before she left for school, I told Abby to get all her music off the stand and in her bag. Well, we got to her lesson, and half her music was missing. I muttered under my breath about beating her.

"Oh you can't beat her now," her teacher said. "If you beat her now, what are you going to do when she sneaks out of her window in the middle of the night when she's fourteen to go on a date?

Good point.

Wednesday, May 13, 2009

The aftermath

We're home again, released yesterday morning. The official verdict? Something called paraflu, diagnosed after they used a machine much larger and more menacing-looking than the blue snot snucker to suck out his nose. Yeah. So wishing they would have done that test before the Nurse Practicioner said the words "Spinal Tap" or "Meningitis" or the surgeon mentioned that he was relieved that we escaped another surgery.

Paraflu is the nasty little virus that causes croup, and it can also cause RSV. We caught it on the early side of things, just as it was causing a rip-roaring fever. It wouldn't have been such a big deal had we not been 10 days post op. Apparently Max is just excercising his family gift for the dramatic. He can't just get a little flu bug. Oh no. It has to be a big mighty flu bug ten days after a huge skull operation that freaks everyone out and results in another nights' stay in the hospital. I know that you have two crazy sisters buddy, but you really, really, don't have to try and out-do them, I promise!

Max has been through a lot in the past two weeks. I have been in tears many times during the course of this because he was so scared, or in so much pain, and I couldn't swoop in and rescue him. And I'm not a wimp, but I had to leave the room when they did the spinal tap on Monday, because I couldn't handle the idea of seeing him go through that and not being able to do anything about it. But the recurring message I heard throughout both hospital stays from the doctors and nurses was "Its such a good thing you're doing this now. He's a baby. He won't ever remember this." and "This is so much harder on the moms than it is on the babies." To that, I call a resounding "bull^%&*!" (Edited for your reading pleasure, and to uphold the illusion that I don't have a potty mouth.)

These past two weeks have changed Max. He's always been such a happy baby; social and loving. He's the kind of baby that works really hard to get people's attention, and when they notice him, he rewards them with a high voltage grin. I was holding him once in the grocery store line, and he got visibly upset when the person behind us wasn't paying attention to him. Well, Max still smiles at people, but he now has a viscious case of stranger anxiety. In his experience these past two weeks, anyone he doesn't know who comes near him is going to make his life hard. At best, they're going to use a cold stethescope to listen to his heart; at worst, they're going to hold him down and repeatedly jab him until they can get an IV in him. By the time we left the hospital yesterday, he would look away if anyone unfamiliar looked at him.

And today really convinced me that what has happened to him has made an impact. He woke really early today, and was ready to go back to sleep by 9am. Problem was, he had no intention of sleeping anywhere outside my arms. And anytime I would put him down after rocking, swaying, bouncing, or nursing him to sleep, he would instantly wake up with a look of panic on his face and start screaming. It was a difficult morning because I was feeling the pressure of a huge pile of laundry, a cluttered house and some very pressing errands to run. (Our car registration is two months overdue and we've been cited twice in the same day for it, and my driver's liscense is expired. I'm trying to avoid getting pulled over and having to explain both of those. I don't think that even the "My son was in the hospital" excuse would get me out of that court date.) Not to mention that fact that my hair hadn't been washed since Saturday morning, (an unscheduled hospital stay will do that to me,) and that I was looking and smeeling something like the creature from the black lagoon. All I wanted was for my baby to take a nap so that I could take a shower and catch up on a few things.

Instead, I spent all morning rocking, swaying, bouncing, nursing, singing, trying to put him down when he closed his eyes, and then seeing him wake up in panic. I could tell he was anxious, scared, and still feeling crappy. I was tired, emotionally drained, and feeling crappy. It wasn't a great mix.

The classic motherhood moment came at about 12:10, when I was sitting in the rocking chair with Max who had exhausted himself into a sleep, with tears running down both our faces. Sweet Ashlynn came in the living room and said "Mom, I'll make my own lunch today, ok?" That was perfect. And when she came in and told me that she made herself a peanut butter sandwich with no jelly, I was just grateful I didn't have to get out of my chair.

So tomorrow, I'm going to remind myself that my poor six month old baby has been through a lot these past two weeks. And if he wants to spend the whole morning rocking in the rocking chair and nursing, I'm going to do it. The least I can do is help his world feel a little more organized and secure. And besides, I washed my hair today, and a day or two of peanut butter sandwiches never killed anyone.

Monday, May 11, 2009

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!

Sunday, May 10, 2009

Mother's Day

Abby came bouncing up the stairs this morning as soon as she heard us wake up, and proudly handed me a red notebook that she had made at school. In it were pictures she had drawn of me, and questions about me she had answered. They're gems! Here are some of the best:

My mom's favorite food is: inchlatatas (that's exactly how she spelled it!)
My mother is 68 inches tall. (She was only off by four inches- I'm impressed!)
She weighs 134 pounds. (That's my girl. I'll keep her!)
She has blood hair. (Blonde? I hope that's what she meant...)
The food she likes best is ice cream. (Yup. That's why, despite what my sweet daughter thinks, I do not weigh 134 pounds.)
She spends most of her time doing violin. (Right again.)
If Mom could have one wish come true it would be for a pool and a mansion. (Well, I think the pool might be her idea. I'm scared of bathing suits. But a mansion would be nice, as long as I had the maid to clean it!)

Seriously though, Mother's day brings with it some weird emotions for me, some of which I haven't quite figured out yet. I've always had a hard time with Mother's Day talks in church. You know the ones: "My mother was the most wonderful mom in the world, and we had milk and cookies everyday when we came home from school, and she never raised her voice, and made all of our meals from scratch, and everyone in the neighborhood adored her, and she always sang us to sleep at night, and had matching clothes, and wore a perfect size 6, etc etc." Um, I'm not any of those things. There are days where I wonder what I was thinking becoming a mom. There are times where all I want to do is curl up in bed, pull the blankets over my head, grab a good book or a trashy magazine, and ignore the cries of "Mooooooooom" that come every five seconds.

Sometimes I feel like I don't do a good job of being a mom. There are nights I end up in tears because I've been impatient and short with my kids all day long, and I worry about the permanent damage I'm doing to them. There are times where I think that instead of saving for their collegs fund, I should be saving for their shrink bills. I wonder if Abby will hate me for pushing her to do violin all this time, and then I wonder if Ashlynn will hate me because I spent too much time doing violin with Abby.

I'm not a fingerpaint letters in pudding kind of mom. I don't really like playing Barbies with my girls. I get frustrated with messes way too easily, instead of rejoicing in my kids' creativity. I forget sometimes how young they really are, and how their jobs are to ask questions, make messes and to sometimes be completely exasperating. Its so hard to be unselfish, open, loving, uncritical, playful and giving when all I want at times is to be left alone with a bag of chocolate chips and a Diet Coke. I'm ashamed to admit it, but there's many times when I don't want to read the story, tie some shoes, make a sandwich (cut into little triangles with the crust cut off) or settle the 16th squabble of the day.

But I love them. I really, really love them. I would do anything for them. Even though it was never life threatening, having Max in the hospital for a week has made me appreciate how fragile life really is. Sounds cliched, but its true. Having my baby in the intensive care unit for five days made me realize that my children are my heart and soul. They are the reason that I do what I do. Sometimes I'm selfish, impatient, or unkind. I'm working on it.

I've spent a lot of time today reflecting on the kind of mother I am, and the kind of mother I want to be. I don't know that I'll ever make up a batch of pudding so that my kids can practice writing their letters, and I don't think I'll ever have decorations all over my house for every major and minor holiday. I'm far from the perfect mom. All I can hope is that someday my kids will forgive me for my imperfections and think "Well, she did the best she could. I always knew, no matter what, that she loved me."

Thursday, May 7, 2009

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.

Wednesday, May 6, 2009

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?

Tuesday, May 5, 2009

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!

Monday, May 4, 2009

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.

Sunday, May 3, 2009


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.

Friday, May 1, 2009

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.
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