Wednesday, December 28, 2011

Exactly One Year

Starting today, there will be a lot of anniversarys concerning Sawyer. Today marks the one year anniversary of finding out he wasn't swallowing amniotic fluid, and that my birth plan would dramatically change in ways I never anticipated.

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However, last year's Christmas was an exciting and relaxing one. I woke up at noon. Our house was quiet. I probably ate mashed potatoes for breakfast, a staple in the last months of my pregnancy.  Everyone I visited that day politely told me how huge I was, telling me I "popped" in just the last week. I agreed, as I shoved pizza (another staple) in my mouth. I ignorantly accumulated newborn presents, commenting on how I'll be using those items for sure the first few months of Sawyer's life. Swaddling blankets galore, bottles, pacifiers, onesies. I was set. I just needed to go to the hospital, have a baby, and bring him home.

 This year was definitely different, and loads better. I was actually able to go out and buy presents and wrap them and do all the things normal people do, instead of laying in bed like a beached whale hoping someone would bring me mashed potatoes every few hours.

Christmas with a little one is so much better and more fun than I ever imagined. Everything was done with special emphasis of being Sawyer's "First Christmas." The tree went up right after Thanksgiving and won't come down until after New Year's. Grandparents and cousins spoiled him with toys, we gave him books, and you can bet I didn't forget my camera when it came time to open presents. I have officially become a full-fledged mom. I slept for two days straight afterwards, but Christmas eve and day were a success.

His latest trick, besides walking with us holding his arms for hours and hours, is eating tiny bits of bread. My mom tried a few nights ago. She took off a tiny bite size piece of bread, put it in her palm, and held it in front of Sawyer. Much to my dismay, he grabbed it with his chubby fingers and it went straight into his mouth. He did it again. And again. So we've been trying everyday since to feed him bread and I think he'll be eating peanut butter and jelly sandwiches in no time.

I have been thinking a lot about Sawyer's eating progression. A lot of family and friends ask "is he eating yet?" and while it's a fairly simple question, it's not a simple answer. I think considering the circumstances, he is doing stellar. But I think other people expect him to be guzzling down bottles by now and happily taking baby food from a spoon. Neither of those are happening right now. But every now and then, he'll consume one little bite of something, not necessarily happily, and it's because I have to trick him into taking it. It's a lot of work. It's frustrating. I have to become a Ninja, and dance along this thin line of force feeding and making it a fun and natural experience everyday, somedays with no signs of improvement or progression. I know this is just the way it is, and I'm not discouraged, but had I done a few things differently in the NICU, I know for a fact he would be a different eater today. I know that if I would have allowed him to nurse non-nutritively, then he would have made the connection that sucking = comfort (in the very least). It would have helped develop those sucking muscles and made him feel comfortable with sucking. He has a weak suck, still, and his pacifier is comforting for him, but it's not used to suck on. He mostly gnaws and flicks it with his tongue. So, most definitely no, he is not taking a bottle, and he has no desire to work to get milk out of a sippy cup. I have come to accept the fact that we may be rockin' the g-tube beyond infancy and toddlerhood. He has missed the window on so many levels, but at least he has the rest of his life to learn how to eat. For now, I can only gently encourage him to eat bits of bread and that's all I really can do for him.

I took him to Winco with me tonight and as we were checking out, we were next to a cart with a 5 or so year old girl next to us. He noticed her and didn't take his eyes off her. Next thing I knew, she was talking to him, and he was smiling and raising his eyebrow for like 5 minutes straight. Whenever she said something to him, he giggled and then kept grinning. ahh.. boys.













Tuesday, December 13, 2011

11 months

I was looking through old video footage of Sawyer as a fragile 4 month old. Even ten minutes of exercise was exhausting and required a lengthy nap afterward. Oh, I miss those days. This little monster of mine is no longer one for intermittent movement or long naps. Our 11 month old is a mover, always on the go, and we're lucky if he takes a nap for longer than 30 minutes more than one time a day.

I feel like ever since his surgery, he has been a spitfire little boy with a sudden interest in getting into everything he can get his hands onto. Besides the usual slapping me across the face, he has to always be holding something-anything- and if he goes two seconds without a toy, he either screams or takes off with his half-way crawl. This becomes an issue when he's connected to the pump and wants to crawl to the other side of the room. So we have to strap him down in a chair and put at least ten objects in his lap to keep him occupied for at least 20 of the 30 minutes. As soon as he's disconnected, he wants to explore and finally we discovered that he likes to be in a certain nook of our living room, back facing the wall, with toys spread out liberally and the TV playing. He can then sit and entertain himself without going nuts for someone's undivided attention.

Yes, he is crawling. Not quite cruising around, but he can get from point A to point B with a hesitant, wobbly crawl. He is a better eater, as well. We tried a marshmallow like Lorraine suggested and he actually attacked it so bad we gave him another. While he was in attack-mode, he bit off a big chunk of a cheeto and gave me a look. He chomped and swallowed it, then threw it down. He will take 1-2 ounces of baby food per feeding, so we're working on decreasing his bolus volume and supplementing with baby food. Not too bad considering he used to press his lips together anytime he saw a spoon or could smell licorice. I hope he keeps it up.

I'm working on uploading pictures, so I will get those attached when they're done. But I figured I'd at least post the updates for now. 


Monday, December 12, 2011

Orchiopexy Time!

We came down to Primary's last Monday and the procedure went really well. I was glad we were able to see the lights at Temple Square Sunday evening. We even knew the perfect parking place (condo complex parking). I will admit I got a little teary-eyed when we drove up State street and saw all the Christmas lights and the Capitol shining brightly. Ahhh. Memories. 





We got to the hospital by 6:30 am and got to visit with all the nurses in the NICU. Thanks to those who sent us on our way feeling confident about his procedure. Even though it was minor, it was comforting to see familiar faces and have that assurance that all will be okay.

After the procedure, which took around 2 hours, Dr. Cartwright greeted us in the famous parent waiting room that we got to know and love. He told us it went really well. His right testicle, which was higher than the left, was down far enough that he was able to pull it down with enough slack. I went back to the recovery  room and was greeted by Sawyer crawling up the nurse's shoulder, crying with a raspy voice, while she was trying to untangle his cords. It was kind of funny. She handed him to me and I rocked him to sleep. We walked to a different bed space and I was able to sit in a rocking chair and hold him. He was pretty loopy, but slightly squirmy, so after Taylor held him for a while, we just put him back in his bed and took a quick lunch break. He took the Pedialyte okay, so we dressed him and unhooked him from his cords and took off. Easy peasy.





The very next day, he was back to his normal self. We can't have him use toys that he straddles (loves) (jumper and walker saucer thingy) so we are obligated to walk him up and down the hall, to every corner of the house, until he's satisfied.

Saturday, December 3, 2011

Heyyyyooo

HI.

I hope you can forgive me for not being more diligent. I have a lot of pictures all over the place of Sawyer, and I'll work on getting them transferred onto the computer tonight! No promises, though. He is SO close to crawling forwards, as he has scooting backwards down perfectly. He has a buggy/car that he just figured out he can walk forward in, so finally he isn't so frustrated with his inability to get around. And of course, he loves to walk around, with a lot of assistance, and likes to walk up and down the halls at his own pace.

We are coming down this Monday (Sunday afternoon) for his long-awaited orchiopexy. It's early and we might be able to hurry and stop by the NICU before checking in, but again, I can't make any promises. For sure, after the surgery we would love to see anyone who wants to visit, so message/text me if you wanna see how big King Sawyer is these days :)

Thursday, November 10, 2011

RAWWWWR!!!!

Only press 'play' if you like being scared.

Halloween was SO great this year. I actually got Sawyer's costume early, instead of procrastinating like I always do every year. Yes, he is wearing nylons. I switched to thicker white girl's tights, even though I thought the nude looked better. Oh well, he was so darn adorable that night, I swear he was born to dress up for Halloween.


Our festivities started at the ward's Trunk or Treat and within the first two minutes, guess who I see?! A fellow NICU mom!! Mauri was one of my greatest friends while in the hospital. She is from Pocatello too and went to high school with my older brother, so we had an instant connection, and have kept in touch since. I got to see her sweet baby and I made sure Sawyer gave her a hug before we left. NICU friends for life!!!!

Then a big group of nieces and nephews came over and we ate soup and rolls and tried not to fall asleep from the carb/sugar overload. Then, finally, of course, we had to visit each side's grandparents to ogle and admire what a scary lion Sawyer was.

Saturday, October 22, 2011

October

First of all, sorry for not blogging for forever. Life hasn't slowed down enough to think back and update on what's new. Second, we are all doing great. Finally, it's 8:30 p.m. and Sawyer and Taylor are  out like lightbulbs and I feel like if I wanted to, I could write and post pictures for hours on end.

I don't mean to divulge information on Sawyer's baby blog, but a majority of what's keeping us occupied is trying to figure out Taylor's job situation. At the beginning of it all, there were mere rumors of budget cuts and laying off a few people at the facility. Just to be safe, Taylor applied to energy sites in Utah, Washington, and Tennessee. Well, they ended up laying off close to 300 people, and Taylor was one of those people. We didn't see that coming, at all. We also didn't hear back from any of the sites he applied for. So, since we can't sell our home for another 1.5 years, we had to be creative and think of ways we could make ends meet and things work out. So, we are now turning to possibly joining the Navy, since Taylor has always dreamt of being a part of the Navy. So as he's been taking tests and filling out job applications, talking to recruiters and applying for every job in Pocatello, Sawyer and I have been thrilled to have Taylor home more. I definitely think of his job loss as a blessing in some ways. Taylor is a wonderful dad and Sawyer absolutely LOVES his daddy. Even though I know Taylor is anxious to get out and start working again, and I know I'm fine doing the parenting thing on my own for the most part, I am thankful for every day we have together as a family. We still don't know if will get any of the jobs he applied for a few weeks ago (fingers crossed), but in the meantime he will probably enlist in the Navy Reserves for now, and when we can sell our home (assuming it sells in this market), then Taylor will enlist to be full-time.

Does someone want to buy Botox for me? I have never looked so haggard in my life. I think there's something to be said about life in the NICU. Not only was it a safe and nurturing place for my baby, but I've come to realize today that NICU moms are treated so amazingly well, so well that when they jump back into their normal life, things don't seem as safe and cushy. I'm speaking for myself, of course. And true, the first two weeks post partum sucked, but the following five months were better in some ways than being home has been sometimes.

I'm sure Nurse Sarah Clark has mentioned it already, but I was grocery shopping at WINCO and decided to get some more gummy worms for Sawyer, and while I was turning down the bulk foods aisle, I saw her! I wasn't sure if it was really her (this is Pocatello...what would she be doing here?!?!) so I stopped, waited until she turned her head so I could see her profile better. I just knew it was her. So I just said, "Sarah?" She turned and looked at me and I was like "Oh My Gosh WHAT ARE YOU DOING IN POCATELLO!!?!?!?!" Unfortunately, I didn't tow Sawyer along for the trip, so I couldn't show him to her. But it was sooo cool to see Sarah and be able to catch up since I wasn't able to say my adieu's to her when we were discharged. I also ran into my sister, niece, and friend that night. That is the charm of living in Pocatello.

Ok, time for pictures.





This was my favorite book from childhood. Glad he likes it too.

Whoops. bonked heads.

I was playing with the settings on the camera and it woke him up. He just stared at me like "what are you doing, mom?"

I put Sawyer in the bathtub for the first time and it was a hoot. I think he liked it.






Not much to report on developmentally. He says "momomomommomomom" and "dadadadada" and "nanananananana" a lot and in the correct context. Nananana means "I'm sad. Pay attention to me." We tried some good ol' Yo Gabba Gabba this week and it has taken on a life of its own. Snacky Snacky Snack Snack. Snacky Snacky SNACK SNACK SNACK. Sawyer loves it, so we let it play for a few episodes. Now getting Sawyer to sleep, that is the challenge. It now requires listening to Andy Williams on YouTube, on my phone. Moon river, silent night, and White Christmas. He calms down and holds my face close to his until he's asleep enough for me to lay him down. I love it, but we are creating a monster, I believe.

Halloween is next week. Can't wait to show you his costume!!



Saturday, October 8, 2011

goo goo ga ga

Not much to write about lately. Oh, except the fact that Sawyer grew some teeth finally!!! His two bottom teeth finally surfaced and are the cutest things in the world. I gave him a Ritz cracker and he went all Mr. Peepers on it.







He is doing better at taking food from a spoon. It's less of a struggle for me, but his patience wears thin after ten minutes. Our goal this week is to try sit-down spoon feeds at 9:00, 12:00, 3:00, and 6:00 (we kept this schedule from the NICU and follow it religiously) instead of the normal 12 and 3 spoon feeds.

I just had a random memory pop into my head and I started laughing out loud. One day in the NICU at Sawyer's bedside, while he was asleep, I was doing my usual internet browsing on my laptop. I was killing time on Google Images and finding pictures for my other blog. I do not remember what I was searching for specifically, but on my screen were a bunch of pictures of contortionists (look it up if you dare). It was pretty awkward slash amusing, and I kept scrolling to find a picture that wasn't totally offensive. Out of nowhere, Sue Stern walks from behind me to assess Sawyer, but since he was sleeping she didn't bother him. Normally, I close the laptop when they did rounds, but this was more of a oh-crap-Sue-Stern-totally-saw-what-I-was-looking-at-slam-the-laptop-shut-NOW- type of situations, because after all, she is Sue Stern and I was pretty much looking at bums as though no one would notice. My face went numb and I think I mumbled a two-syllable response of some sort when she said she'd come back when he was awake. I felt so stupid. But at the end of the day, I know Becky would appreciate this story, so I feel like exposing myself and sharing this experience on my baby blog is completely acceptable.

Now back to my innocent and pure baby Sawyer.

No crawling around yet...But tummy time is improving significantly. He definitely prefers to be upright whenever possible, but we find ways to distract him to his belly so that it's not a scary thing.

He is up to 132 mL every 3 hrs. His pediatrician pushes for 24 cal, but he usually gets 22-23 cal because he wretches when the formula is thick. He is gaining weight beautifully..not too chunky and not underweight...not that I wouldn't love a chunky baby, but his weight is distributed in his long limbs and I can tell he's satisfied with 22-23 cal.

We watched Annie on Netflix the other day. He was mesmerized.






Tuesday, September 20, 2011

The significance of 8 months at our house.

Sawyer turned 8 months old last week.

When I was a whopping 8 months pregnant I specifically remember feeling huge, overnight. (I even Tweeted about it.)

I remember when I went in for my 35 week appointment with my OB, Dr. Cox, and while I uncomfortably laid on my back, he pressed on my belly feeling for Sawyer's head. He took out his measuring tape and measured not once, twice, but three times. He said, "Vanessa, you're measuring too big for 35 weeks. I'm ordering an ultrasound for you to make sure everything is okay."

Four hours later I watched the ultrasound tech check my babe's vital organs, double checking that his brain was all intact. She was happy to report his brain was intact. His heart looked healthy. His spine looked great.  His kidneys were present. His stomach was not. After an hour of me trying not to freak out, she quietly concludes, "I can't make any diagnoses, but it appears that your baby doesn't have a stomach. Either it doesn't show because it isn't there, or because something is preventing him from swallowing amniotic fluid." She then proceeded to refer me to University of Utah perinatology and then and there they made arrangements for me to see specialists within the coming week.

I walked out of the office completely numb. I kept my emotions in check in front of the other expecting moms in the lobby.

We got to the elevators.

I broke down and began sobbing. My mom hugged me.

She took me to her house and made me dinner as I sat and bawled at the kitchen table. Taylor was on his way home from work and came straight over. He and my brother gave me the sweetest blessing. We were all in tears. I felt an overwhelming feeling of peace, that everything would be fine.

I remember being irritated with the ultrasound tech. She had nothing but bad  news to give me. She should know better than to make a pregnant woman cry. It didn't sink in until later in the game that she saved my baby's life by not sparing my feelings. She did her job and because of her, I had a really fortunate experience, despite the reality of having a baby with a defect.

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I had a wellness check with Dr. Cox yesterday and took Sawyer with me. They couldn't believe how healthy he looked. The nurse kept commenting on how chill he was, as long as he had his binkie in his mouth.  Dr. Cox asked when I was planning baby no. 2. I just laughed. FUNNY!! I looked for the ultrasound tech to thank her, but she was working at the new hospital that day. Seriously, I appreciate her so very much.

At 8 months, Sawyer is a ball of energy. He is slightly attached to his mommy and daddy, but he will let others hold him as long as he can see me. The cutest thing in the world is putting Sawyer in sweatshirts and hoodies, especially in the morning when it's chilly. Between his puffy sleepy eyes and no distinction of a neck, I seriously want to gobble him up.

Developmentally, he is putting more food to his mouth voluntarily. We tried squash today and he took three spoon fulls without a fight. He likes to gnaw on cheese puffs during his feed and gummy worms/licorice on occasion, but it all eventually ends up on the floor, as I think Sawyer is already learning that our dog will take food out of his hand if he offers it.

It was funny because pretty much the night we got home from our follow-up appointments at Primary's, Sawyer reached for a toy and decided to get it by going onto his belly. He got it, then went back to his back. A week later, he just naturally rolled to his belly and pushed up like he was ready to crawl. I was excited to show his PT. She was thrilled! He isn't quite rolly-polly-olly all over the floor, but he is moving more and indicating that he's preparing to crawl in the next few months.

These two love to hang out all day

Favorite toy. He could play in his jumper all day

Actually did his hair today


Other than that, life is about the same. I'm finally getting back into a work-out regimen, since Dr. Branch from University of Utah hospital told me not to get fat. While the weather is still tolerable, I have been taking Sawyer on runs on the Portneuf greenway to soak in the last days of this Indian summer. I probably shouldn't run with a stroller meant for strolling, but as long as no one is looking, we're all good.

Friday, September 2, 2011

The Most Robust Esophageal Atresia Baby

That is what Dr. O'Gorman said when she assessed Sawyer during the Dysphagia clinic. And she is right!! All those who assessed him had nothing but positive comments and observations about our chunky Sawyer. The only changes we made were to do continuous feeding during the night, which means I get a break from 9 pm-3 am. I wake up at 6:00 am and feel well-rested enough to start his feed and actually stay awake.

It was comforting to hear repeatedly from some of the Dysphagia therapists/ RD that they've seen kids resist food and suddenly decide they want to eat and go to town. I really needed to hear that. As I type that, Sawyer is sucking on a gummy worm. Cautiously of course, but he hasn't thrown it across the room yet. 

The Urology appointment went as expected. His left teste has dropped some, but his right is still up there pretty far. As I understand it, we will watch them for a few months, and if they haven't dropped on their own, they will be surgically descended, hopefully in December before the new year.

The best part of the day was seeing you NICU nurses and staff! Sawyer remembers your faces and voices because he doesn't usually let just anyone hold him. I also fulfilled my oatmeal raisin cookie craving from the Rainbow Café for breakfast. Them cookies are good. Them cookies are awesome. Them cookies are delicious.


This is totally unrelated but there is a possibility that Taylor's job could take us to Salt Lake City or Washington or Tennessee. We'll know better in a month, so I don't want to get my hopes up, but it's all I've been thinking about for a week. I love Washington! But for Sawyer's sake, I'd love to stay close to Primary Children's and for my sake, close to the Rainbow Café. 







Tuesday, August 23, 2011

7.5 months





Seven months of age is my favorite so far. Sitting up, jabbering (da-da ba-ba), playing peek-a-boo, laughing when getting tickled, chewing on toys, and sleeping through the night (still!).

Being able to bathe him in the sink frees up a lot of time. It's quick and easier than sponge bathing for sure.

Of course there are a few hang-ups, such as the fact that he basically will not eat.

He won't roll onto his belly even though we have tried every trick in the book. He also doesn't tolerate tummy time for very long.

He is terribly afraid of people. He's used to peace and quiet, so if someone yells or sneezes or laughs at something he does, he sticks out his bottom lip and a cry quickly ensues.

He spits up foamy formula every now and then.

He also had his first cold last week. He does NOT like bulb syringes going up his nose or to have his nose wiped, for that matter. I kept him inclined while he slept and that kept him asleep, thankfully.

The cold is gone and he is back to his normal 7-month-old self. He loves faces more than toys and can tell when he's home, in his safe place, and when he's not. I have been able to take him to most family functions, to the store, and on walks around the block and he watches people cautiously. He is his mother's son.
Phillips Family Reunion


His ST and PT let me do a bulk of the therapy, and we basically have all day to work on our goals. But when it comes to food, he is smart and knows how to purse his lips and dodge the spoon. Sometimes I can sneak a tiny piece of a Puff into his mouth, in his cheek, but more often times than not, he spits it right out.

We are looking forward to our visit next week. Urology appt at 9:15 am and Dysphagia clinic at 1:00. For those interested, we will try to come up to the unit around 2 or 3, depending. Hope to see you all!!






Tuesday, August 9, 2011

my top 15 favorite pics
















I'm finally trying to tackle the task of scrapbooking the several hundreds of pictures we've taken thus far of our boy.  These ones stick out to me the most because they seem so true to Sawyer's nature. They are the everyday, consistent faces I have gotten to know, and to see them in pictures of him as a newborn melt my heart.