Monday, November 28, 2011

Passing on Pediasure

Life is speeding by and I’m neglecting my blog… Is it really December in 2 short days?! It seems like Fall came and went before we even captured the beauty of the leaves. Old man winter is knocking at the door – I’d love to keep him away a little longer.

I’ve been thinking about this blog entry for about 3 weeks. One of the main goals of my blog is to provide support and real life advice to families with preemies, while allowing you a few glimpses into our everyday life as well. As you all know, Greyson and feeding continues to be a challenge. Like many micropreemies the battle of weight gain is constant. Greyson was sick with a mean stomach bug at the end of October. He vomited for 5 days straight and after laundering every blanket/towel/rug in my home I decided to listen closely to our pediatricians’ advice and introduce Grey to the BRAT diet. The BRAT diet consists of bananas, rice, apple sauce and toast. Grey’s BRAT diet was made up of sweet potato cereal puffs for infants, apples and crackers. Most challenging was removing Pediasure from his diet. It was hard to mentally deny him the bottle that I value so much – this is his main source of calories and fat. It was also difficult to ignore his pleas for a “Baba.” However, after 2 days on the BRAT diet, it was obvious to many of us that Grey was truly hungry and interested in food. He even said several times “Let’s eat!” I have to admit, I was shocked to hear him make this statement. He was hungry and willing to put anything in his mouth. On day 4, I maintained my strength and did not give in to the Pediasure - I was allowing Grey to drink soy milk. I didn’t want the dairy to upset his stomach and cause further vomiting. I eventually found Bright Beginnings Pediatric soy milk at the grocery and bought a case – what appears to be Pediasure’s equivalent in soy form. Here’s what I know – Grey’s appetite has increased in 3 weeks. We’ve had one vomiting spell since the switch. Many of you know that we struggle with vomiting and this has been going on for too long. I’ve discussed this issue with many of the health care providers that make up Grey’s team. No one has ever recommended that we stop the Pediasure or that Pediasure may be related to our intermittent vomiting spells.

I have this disturbing suspicion that Pediasure was causing our previous issues with vomiting. We are on our 4th week with no Pediasure and Grey continues to show a new interest in food. He eats chicken nuggets now! I used the word “disturbing” because I am truly troubled that I may have been causing many of Grey’s feeding issues with the everyday Pediasure consumption. I have this idea in my head that Pediasure was causing him to feel sick and many times causing him to be physically sick. I am not confident at this time that my suspicions are factual but I am going to continue to monitor his progress closely. Here’s what I do know, I spent some time researching Pediasure and I’m not the only mother of preemie who has experienced these vomiting spells. I read another parent’s blog and our experiences are almost parallel. Her son was started on Pediasure and then began randomly vomiting after 4-5 weeks. After she stopped the Pediasure her son’s vomiting also stopped. I continue to pray that we too may have found a contributing factor to our many feeding issues.

I’m also thinking about having Greyson tested for food allergies. Many people that witness his intermittent vomiting mention it makes them think he has a food allergy or intolerance that is causing such a harsh response. He literally projectile vomits – it’s like someone pushes back a flap in his esophagus and squeezes his stomach of all its contents (the visual was probably unnecessary).

I realize that writing an entire blog entry on vomit may seem extreme and leave you with an unpleasant feeling. However, I need to share our trials to educate others. I will continue to post about our NO Pediasure diet. We are 22 lbs today and I’m praying Grey continues to tip the scales. We need a WIN!

Friday, October 7, 2011

Mini Pizza with big Flavor!

Yes, I’m still spending lots of time in the kitchen! I feel compelled to share good recipes with friends. So the other night I made mini pepperoni pizza. Not only were they tasty but they were fun to make too!
I feel so much better about actually making recipes instead of throwing freezer foods into the oven. So, for all of you that have little ones who like pizza or big ones that like pizza this recipes is worth a try.

Here’s what you need:

• 3-4 Tortillas
• A jar of marina or better yet pizza sauce
• Mozzarella cheese
• Mini pepperonis that you now see popping up @ your local grocery
• Italian spices like basil and dried oregano to spice up your sauce – I also added parmesan cheese to my sauce which enhanced the flavor.

Step 1:

1. Preheat Oven to 400 Degrees
2. Using the top of a jar – cut out circular crusts using the tortillas – I used the top of a Ball jar and got 3 crusts from one tortilla and I was using smaller tortillas too.
3. Place the bottom of your crusts in a muffin pan – they should fit nicely with a little tortilla covering the sides.
4. Add a spoonful of pizza sauce (with added spices for flavor) and parmesan cheese to thicken the sauce
5. Top with mozzarella and mini pepperonis
6. Cook until done – probably about 12 – 15 minutes (I can’t remember how long)

Wah-la! Delicous little homemade pizzas.

*I did not invent this recipes, I either read it in a magazine or on a cooking blog*

Thursday, October 6, 2011

Eating Woes Continue

Here’s a little update about Mr. Meddler. Grey is healthy and active like any other 2 year old. He is still significantly underweight and I received a call last week letting us know that we have made it to the top of the waiting list for feeding therapy. Wow, that took about 7 months. And it is projected that it will take an additional 4 weeks for insurance to confirm that G actually needs the therapy – of course being born 15 weeks too soon isn’t enough evidence.

So, I’ll wait for the call from my insurance company. My expectations for this therapy are low; however, I’ll take the slightest gain as an improvement. We definitely have some work to do in the eating department. Grey is 27 months corrected and weighs 21.4 pounds. Honestly, it’s an everyday battle and I personally think we should qualify for family feeding therapy! I’d have to bring in Gigi for a much needed therapy session. Her dedication to Grey’s health and weight is endless.

I guess it’s important that we recognize there is a difference between being a picky eater and actually having a toddler with sensory food aversions. You might be thinking, so what are the symptoms of a toddler with sensory food aversions. I’ll describe some specific characteristics of Grey, which puts him into this category. G consistently spits out food, he is bothered by the textures of foods and refuses certain foods like purees. He’s disruptive a meal times and prefers to destroy his food instead of eating it. Many children with food aversions prefer a diet of sugary foods which is true for G as well – he’s always up for a cookie or a handful of M&Ms. I must interject here and say we have seen an improvement. He eats better @ Gigi’s when his cousins are present and eating. I usually put him in his highchair @ dinnertime and give him a few food items, which I know he prefers and I walk away and completely ignore him. He becomes hypersensitive in his feeding chair – doesn’t like anything to be on his hands, if I ask him a question he spits out whatever is in his mouth – this one drives me crazy. I find chewed up food balls all over my house! Lots of half chewed raisins and pepperonis.

Anyway – I hope this feeding therapy helps – I really do.

Here is a recent pic of G and Matt – they just happened to be dressed alike on this day so I snapped a quick picture.

Wednesday, October 5, 2011

Where's the flour?

I’ve been thinking about turning my blog into a baking blog! I'm not being completely serious but something about Fall weather drives me into the kitchen and I can’t seem to stop researching delicious baking ideas.

Recently I whipped up some mini snicker cheesecakes for Matthew and Grey. I made a mint cookie recipe for Matthew and I must say they were good! I’m documenting my baking trials so we remember our favorites. Below are some shots from the kitchen.

Sunday, September 4, 2011

Finally Fall

Okay, so I’ve been a bit negligent on updating the blog – I apologize, especially to those who have sent me personal emails telling me to get busy!
We’ve been very busy lately. July/August is the most demanding time of year for me at work. Matt is also busy with home designs and a few side projects. It’s amazing how time slips by – I’m still startled that it’s September. However, I am excited that we are finally entering the fall season. I love everything about fall! Pumpkins, craft fairs, cool weather, and beautiful leaves. I truly enjoy walking across Vanderbilt’s campus in the fall – it’s gorgeous.

We just had Grey’s 2 year checkup and all is good, except, for his weight (not a big surprise). Grey weighed 22 pounds at this appointment – including clothes. It’s fair and accurate to say he is small. We are still significantly off the chart… I’m really starting to detest the growth chart. I’ve agreed to try feeding therapy again. I think I’m to the point where I would try anything. However, Grey does eat. He’s overly particular about his choices but really what 2 year old eats everything you introduce – I’m hoping very few for my own sanity. He’s particular and favor’s meats like sausage and pepperonis and likes fruit like apples and grapes. He’s a huge fan of mini reese’s cups and we allow them every day if he wants them. Yesterday he ate eggs and cheese – huge success! This morning Matt tried getting him to take a spoon full of coconut oil – fail!

Grey’s becoming more skillful with this mischief. He is truly an explorer. Yesterday we had him at the pool and he ran around exploring until he found something of interest – a friend’s camera. I saw the look in his eye – the camera was going to end up in the pool! I jogged through the pool water as quick as anyone’s legs can carry you in water – I caught the camera before it made a splash. Now these are the moments when I need “time out” to mean something.

He still favors the phrase “mine!” and his little voice is so funny that we’ve encouraged this impolite phrase with constant laughter. He also says “hooray, I did it” about very simple tasks like opening a box that he’s opened 100 times. My favorite is “where’s daddy” which is said 50 times a day. I must say that Grey is more tender than terrible. He still loves to cuddle and give kisses, which means the world to me. He’s a sweet lovey baby still.

Beginning to introduce the potty - more to come...

Thursday, June 30, 2011

To the Mountains

Well – we took a little trip to Chattanooga to visit the aquarium and the creative discovery children’s museum. The penguins were the highlight of the aquarium and the “river play” was a blast at the museum. It was a bit relieving to have a few hours of acceptable hands on play. Grey is very hands on with everything, which causes Matt & I to constantly chase him down in stores and our home to remove potentially dangerous items. We also planned at visit to Rock City – how could we not stop when there are like 600 billboards along the way to Chattanooga marketing the tourist attraction – I felt like they earned my business. And wow, talk about nature’s beauty! I had no idea that I’d actually enjoy this journey. The ancient rock formations and breathtaking views were definitely appreciated… I do mean breathtaking if you are any bit uneasy of heights. I experienced an innate cautiousness at many of the amazing views. I couldn’t even focus on the famous “see 7 states” because I was to busy monitoring each foot step while holding Grey. One of my favorite memories will be Greyson whispering "monsters" each time we entered a dark cavern.

Grey giving the fake penguin a sweet hug.

Everyone say "Cheese" for our Cheesy moment!

Lover's Leap

I hope there's incoming teeth in Grey's mouth b/c he's back to eating his hands!

Sunday, May 1, 2011

March for Babies!

Thank you so much to all the wonderful family and friends who supported our March of Dimes walk this year. We couldn’t have asked for a nicer day – the weather was gorgeous. It is awesome to see so many families coming together to walk for stronger healthier babies!

After the walk I decided to come home and make an updated video of Greyson. Anything I do to encourage another family with a mircopreemie. There were many dark hours in the NICU when my faith was minimal and our future was grave. However, I never gave up hopes. I prayed for hours and poured out my love everyday… I remember sitting next to the incubator and thinking… I’m sending my love through those plastic walls and Greyson will feel it and know how important he is to us all.

Well, here’s the updated video:

Wednesday, April 6, 2011

Toot is Two!

Exciting things to report: Greyson is two! Yay! Another successful healthy year with our sweet boy. However, I am a bit nervous if I’m suddenly expected to hit a terrible twos patch in our lives. Grey is quite the handful as it is. Seriously, I’m not exaggerating at all. This baby keeps you on your toes every minute of the day. I received a phone call today from Gigi who usually reports on her daily thrills and scares produced by the one and only. Today Gigi was talking to a neighbor while G played in the yard. After getting a view yards away Gigi noticed Grey had climbed into the power wheel and was off! Speeding through the neighbor’s yard while rolling through their mulch and taking a quick right toward the road. Gigi immediately abandon her conversation with the neighbor and kicked off her flip flops for the sprint. Sadly, these stories are very typical. Matthew just sprinted down our hallway the other day when we both heard unexpected running water! Grey had climbed into the tub and turned the HOT water on full blast. He was soaked in his jammies and looking at us like we were the crazy ones.

We had our follow up visit at the preemie clinic on Tuesday of this week. Grey was evaluated by several people throughout his assessment every one of them commented on how he was “busy”. I guess busy is a nice way to say this baby has destroyed our evaluation room and unplugged every piece of equipment we use! Grey was given the Bayley assessment. Bayley scales of infant development are used to describe the current developmental functioning of infants and to assist in diagnosis and treatment planning for infants with developmental delays or disabilities. The test is intended to measure a child's level of development in three domains: cognitive, motor, and behavioral. Grey passed all areas, with our lowest score being 83 and our highest being 100%. Of course the 100% was scored in motor assessment. His fingers may look like little slugs but they are making things happen! And his dexterity is pretty impressive. Often times he is frustrated because his ambition outweighs his physical ability – like the determination to lift a heavy object.

The area of concern is weight – nothing new to the Stokes household. A constant everyday challenge is getting G to eat! He is still on pedisure – 3 bottles a day along with 3 meals and snacks. However, he still hasn’t reached the charts. He used to be in the third percentile for height but he has fallen off again. He weighed in at 20.6 pounds minus shoes. Not very impressive for a two year old. This past weekend he was wearing 6-12 month pants that were 3 inches to short! We actually received a referral from the clinic to see a feeding therapist/specialist. There have been some recent concerns – unexpected gagging and vomiting. Chewing foods and spitting them back out – which he has done for quite some time. I’m open to any advice or assistance in this area of weakness. It’s obvious he isn’t malnourished and he looks completely healthy to strangers but we were really hoping he would have closed the gap by now. Our dietitian recommended a different kind of pedisure that has more calories per ounce. She forgot to mention it is not on the shelves at any local stores and is cost $100+ for 24 cans, which would get us 10 days. We already pay over $100 a month in pedisure and this new form would cost a lot more. And this is where the frustration lies. I plan to place a call to BCBS tomorrow to see if my insurance will cover any of the expense but the typical answer for all this preemie stuff is no. I work hard and pay hefty insurance premiums and I find this so disappointing.

On a happier note, we are Marching for Babies on March 17th @ Centennial Park in Nashville. A wish that one day all babies will be born healthy. Please walk with us or donate to this wonderful foundation.

Thursday, March 3, 2011

March for Babies!

March for Babies… What it means to me

The March of Dimes is gearing up for its biggest fundraiser, which raises money for research, education, advocacy and to support families who have to spend those traumatic first few weeks or even months of their baby's life in the neonatal intensive care unit.

The March for Babies walk is very personal to my family. Greyson was born weighing a mere 1 pound 10 ounces and he was on the edge of viability. We spent 102 days in the NICU and every one of those days was difficult. The first few weeks were the most painful. I watched a precious innocent baby boy fight for his life because my body failed him. I suffered from HELLP syndrome @ 24 weeks and managed to carry Grey for another week – delivering him 15 weeks too soon. Essentially my body was shutting down and in order to save my life – Greyson was delivered. Going back to that time isn’t a memory I revisit often. I kept a journal during this difficult time and today I choose not to read Grey’s journal. Sometimes I’ll be looking for something in his closet and glimpse the green of his journal sitting on a shelf. I’m not interested in reading my responses to the heartache of having an extremely premature baby. However, I am fortunate for our Nurse who gave us the journal and encouraged me to document our journey. I will read the journal again and share it with Greyson – he’ll then understand why we call him precious all the time – his life was considered valuable from the beginning and we fought for every hour along with the support our health care team at Vanderbilt Children’s Hospital. It’s been 2 years and some may assume that we are only stronger. However, there are many times that I definitely feel weaker. The further we move from those memories the safer I feel and subsequently the memories become more frightening to revisit. How did we get here? When exactly did Grey’s medical path take a drastic turn for the better? The medical path for a micropreemie is often unknown. I truly believe we were blessed to have taken the road less traveled- the road to a successful healthy life with no long standing complications. Greyson is a miracle.

So this is why I am passionate about March of Dimes. Prematurity is the leading cause of newborn death, and babies who survive often face the risk of lifetime health challenges, including learning disabilities, cerebral palsy and intellectual disabilities. Babies shouldn’t have to fight for their lives. Their hardest days should not be their first days. The March of Dimes is making it a mission to provide research and support to the families of babies born too soon. The March of Dimes supports research aimed at preventing premature birth, birth defects, and infant mortality.

If you feel compelled to save the lives of babies then please make a donation today. Skip the Starbucks Latte this morning and donate $5 to March for Babies!

Click here

Sunday, February 13, 2011

Is that the Sun Shining?

I think it’s safe to say that we’ve had a harsh winter this year. I moved to TN in 93and we’ve hands down had the most snow this year. Snow is beautiful and exciting however, the excitement quickly vanishes when it results in treacherous driving conditions and 3 hour commutes to and from work. Grey only knows that we rush him from car to house and yell “its cold” as he giggles is way through the chill of the wind. We are definitely welcoming the warmer weather and longer days for play. Today we were pleasantly surprised with 60 degrees! I was so eager to take Greyson outside that I paced the floor while he napped. I even turned up my house cleaning music a little louder than usual in hopes that he wouldn’t sleep too deep and miss the sunshine! Matthew and I decided to take him to the park by our house. I wasn’t sure if the excursion would be a success because he’s still small for jungle gyms – however, Mr. Fearless welcomed the play ground with open arms and squeals of joy. He didn’t even hesitate before running to a slide and zooming down. Don’t let his size stir any doubt – he’s a big boy with a big attitude. We went to Cracker Barrel the other night and he ran through the toy area and saying “hey!” to all the sales associates. One lady bent down and showed him an animal and said “what’s this?” and Grey said “I don’t know” She immediately left and came back with 2 other associates and said… you have to see this baby talking! Sometimes you just don’t feel like explaining that he was a 25 weeker so the women watched in awe as the infant spoke words… this infant is almost 2! Speaking of size, I think we have hit 20 lbs. Grey is still finicky when it comes to food. It’s like we don’t have any consistency – besides grapes. He loves something one day and won’t even touch it the next. I made homemade blueberry pancakes this morning and he wouldn’t even open his mouth… sad. However, we keep trying foods and continue to tap into our culinary creative side.

Oh and I must comment that since the tubes, Grey is really starting to talk. He’s certainly interested in mimicking sounds and words. Not just sounds and words – sentences! I have to admit I’m a bit relieved - a fear to check off my list – he will talk.

Here are some pictures from our day. Thank you Mr. Sunshine for making our day!

Sunday, January 16, 2011

Hello 2011

We’ve had a pretty eventful 2011 thus far – 15 days into the new year! We began our year with a visit to the emergency room where Greyson received 4 stitches after lacerating his chin. Grey climbed into cousin Taylor’s baby stroller and flipped it – landing chin first on the hardwood. Tomorrow we go into surgery in hopes of draining that pesky middle ear fluid! Greyson will have tubes placed into both ears. Our day will begin early and I’m hopeful everything will go smoothly. I’m also hoping we see a little less of Vanderbilt Children’s hospital the remainder of this year. Little man continues his fearless exploration, which leaves us all a bit nervous. The other night he was dragging my largest pot down the hall, I’m pretty sure it is bigger and outweighs him. Matt noticed blood on his face and rushed him into the bathroom - just a busted a lip. I guess the pot was winning the tug a war but Grey wasn’t ready to retreat back to normal play. Gigi called me at work the other day to tell me that somehow Grey managed to climb into his crib – unassisted while she was out of the room. She was truly stumped and overall concerned – I wasn’t surprised. He’s been bossing with his tiny finger and shaking it at Matthew and I while repeating a very authoritative “no, no, no!” I haven’t decided how to handle this new habit but I see a time out chair in our future.

I’m happy to report that Greyson has been drinking more pediasure. We are very close to our goal – 3 bottles a day. I’m eager to get an accurate weight tomorrow. When traveling with me he’s still in his infant carrier, which his legs dangle over at this point. He’s definitely outgrown the car seat but he hasn’t reached the 20 pound weight requirement. However, he's been loving the new mini reese cup bites.