Saturday, May 30, 2009
Friday, May 29, 2009
Thursday, May 28, 2009
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
Sunday, May 24, 2009
"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
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
Sunday, May 17, 2009
"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
One week pre-surgery
Day of surgery.
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!)
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
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?
Wednesday, May 13, 2009
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
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
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
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
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
Monday, May 4, 2009
--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.
Sunday, May 3, 2009
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:
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.
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.
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
Playing with Dad, and waiting. (And waiting, and waiting.)
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.