Saturday, February 28, 2015

Giving Back With Little Dude's Birthday Blessings Bash!

Next Friday is Little Dude's first birthday.  In the year since he's been born, our family has been blessed in so many ways by family, friends, and complete strangers.  We've received meals during and after Little Dude's hospitalizations, money to help cover gas and other expenses from his many doctor appointments, visits, phone calls, and messages of encouragement, help with household chores, etc.

I believe in paying it forward when someone blesses you.  So, in honor of Little Dude's birthday, I'll be donating 20% of the amount of each order placed during the month of March at my Etsy shop, Annalie's Baby Boutique, to Gracie's Gowns.  I plan to make this an annual event and will pick a different organization to donate to every March.  I'm excited to kick off the first annual "Little Dude's Birthday Blessings Bash" month! 


You can also support Gracie's Gowns by sponsoring a gown for a child.
 
I've written about Gracie's Gowns before, but just to refresh your memory, Gracie's Gowns is a non-profit organization that provides personalized hospital gowns to chronically ill and special needs children at no cost to the family. Gracie's Gowns is very special to me because not only was it founded and run by a very sweet friend of mine, but because Little Dude received a gown from her as well.    

Little Dude with his hospital gown from Gracie's Gowns.  It's personalized with his name in the corner.

Let's make this month a memorable one for Gracie's Gowns! 



Tuesday, February 17, 2015

Random Monday - Feb 16, 2015

I had planned to write this post yesterday, but decided it would be more fun to get the flu and be miserable all day instead.  Side note...that was a terrible plan.




Star's bedtime and naptime ritual includes a "huh and a mah." She gives me a big hug (huh) and a kiss (mah) on each cheek. Then she leans back to look at my face, says, "uh-oh!" and, wipes her kisses off my face before laying down to go to sleep.

Tattling is not allowed in my house.  It's okay to tell on someone if they're hurting someone or breaking something.  So, when a child comes to me with that tattling look on their face and starts their sentence with, "So-and-so did...", I cut them off and ask them if someone is hurt.  If the answer to that is no, I ask if someone is breaking something.  Princess came to tattle on Little Man to me the other day so I asked her both questions.  Her first answer was no, but when I asked her if someone was breaking something, she replied, "Just the rules!"
Touche, my dear.

Little Man: Mommy, can I take my sweater to grandma's house?
Me: Sure, I guess.  Why do you need your sweater?
Little Man: In case I get sweaty, then I can put it on.

A photo posted by Hannah (@supermommyornot) on



Last week was Tube Feeding Awareness Week.  There are so many myths and wrong beliefs about tube feeding that raising awareness is important so kids and adults who are tube fed don't feel ostracized or abnormal.  I shared Little Dude's tube feeding story on the blog and shared posts on Facebook and Instagram to help raise awareness.




Can we just take a second to talk about how a certain little guy is only 2 1/2 weeks away from turning ONE?!?!  I've always looked forward to my kiddos going into the toddler stage as it's so much fun (and work!), but it scares me a bit with Little Dude because I have to face the fact that he's slowly growing out of being a baby and that means that we will have new challenges soon.  So far, he's unable to eat any table foods without choking except for gluten-free puffs that I break in half for him, we don't know for sure if he has Celiac's Disease or not, we know he has food sensitivities, but not sure to what, and he is nowhere near ready to drink out of anything other than a bottle.  I'm excited and nervous to see what this next year brings for my sweet little boy.  We'll just take it one step at a time and I'll keep reminding myself that he won't be going off to college getting all of his nutrition from formula in a bottle.


Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!



Friday, February 13, 2015

Shopping for Paper Airplanes

Disclaimer: This post contains affiliate links.  By purchasing items through those links, I will earn a commission. You will not pay more by buying a product through my link. When you buy through my affiliate link, it helps me be able to offer you free items and giveaways. 
  
Yesterday, Little Dude had a full day at the doctor's with a 4+ hour long gastric emptying study (results came back normal, yay!!) and two appointments.  We had some time to kill between appointments so the two of us headed over to the mall.  I hadn't been to Gymboree for a while, and so I loaded Little Dude in the stroller and made a beeline for the store as soon as we got through the mall entrance. 

I found some adorable things for Little Dude that I wanted to share with you.  


I love the nostalgia of paper airplanes so when I saw that there's a whole line at Gymboree dedicated to them (search for paper planes to see the whole collection), I couldn't walk away empty-handed.  I found two onesies and an adorable knotted beanie hat for Little Dude.

I thought the "Dream Big" onesie was especially fitting for my special needs little guy

Gymboree is currently having a Presidents Day sale on EVERYTHING with up to 80% off!  You can't beat those prices and when you shop now, you won't pay full price for anything online or in store. 

How sweet is this little hat! 

 What's your favorite collection currently available at Gymboree right now?



Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!

Wednesday, February 11, 2015

Little Dude's Tube Feeding Story

This time last year, Little Dude was still a month away from being born, and we had no idea what he would face.  If someone had told me that he would have to be tube fed, I would have completely freaked out.  In fact, after one of Little Dude's many doctor appointments when he was about a month old, I stopped at the Target Cafe to attempt to feed him before driving the 45 minutes back home.  While I struggled to get my screaming baby boy to take even one drink from his bottle, a family at a nearby table struck up a conversation with me.  They could definitely see that something was wrong and asked about him.  We talked for a while and at one point, the mom asked what the doctors were planning to do if we couldn't get him to eat.  I remember standing there stunned when she asked if he would have to get a feeding tube.  I stammered out that I didn't know, but in my head I was in complete disbelief and denial that it would ever come to that.  I mean, only kids who were seriously ill, disabled, or premature got feeding tubes, right?  Little did I know that less than a month later, I would be signing a form allowing a surgeon to place a G Tube in my baby's stomach.

Little Dude had an Ng tube for 5 days before getting his G Tube

Actually, I lied about not knowing that Little Dude would have medical issues.  From the moment I got pregnant with him, I just knew that there was something wrong.  I didn't know what it was, but I knew that it would be something lifelong.  I was fully expecting a diagnosis of Down's Syndrome or something like that during my ultrasound at 20 weeks and was kind of surprised when the technician said that the baby looked perfectly healthy.  Then, when he was born, the doctors and nurses kept pointing out little things that were a little...off with him, and I knew that it was just the beginning.  And yet, nothing could have prepared me for what was coming.

2 weeks after the G Tube was placed
5 months after the G Tube was placed
























When he was 2 months old, Little Dude was hospitalized for nine days for failure to thrive because he was only taking 7-9 ounces of formula in a 24 hour period.  On the third day in the hospital, an Ng tube was inserted (a feeding tube that goes from the nose to the stomach) and five days later, he went in for surgery to have a G Tube placed directly in his stomach.

Up close view of Little Dude's G Tube

It's been a long, hard road.  Until he was about 6 months old, Little Dude screamed a lot.  It was by far the most stressful time of my life especially since I often had to hook him up for a feeding and tube feed him while he screamed and tried to arch out of his bouncy seat.  I was terrified that he would pull his G Tube out because he fought everything so hard.  I had bruises on both of my forearms because of how hard he arched his back and pushed his head against my arms when I held him.  He would cry harder when I set him down and, due to tracheomalacia, he often turned blue when he cried so I worked constantly to keep him as calm as possible.  I get a knot in my stomach just thinking about those months.  Finally, around 6 months of age, he settled down and, although he's still pretty time-consuming and difficult to care for, things are so much better than before.       


His tube has been a blessing.  He's had several infections around his G Tube site, but even with that, I'm very thankful that he has it because without it, he would probably not be here today and definitely wouldn't be thriving like he is right now.  We've been lucky not to have the negativity from family, friends, and strangers that so many other tubie families have to deal with.  Yes, we've gotten some rude questions and comments, but overall, most interactions involving Little Dude's G Tube have been positive.

My Supertubie!

For more information, here's a Family and Friend Guide to Tube Feeding that's really helpful and a blog post I wrote about how to support parents of children with feeding issues and disorders.            

Do you have any questions about Little Dude or tube feeding?  I'm happy to answer them!  Just remember that there are no dumb questions and a year ago, I had the same questions.


Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!


Tuesday, February 10, 2015

Little Dude - 11 Months

Age: 11 months


Weight and height: 16 pounds, 3 ounces and 28 inches long.  In January, he had pneumonia and RSV and wasn't able to handle his regular volumes of food so he lost some weight.  He was down to 15', 14", but thankfully he's starting to put some of that weight back on now.

Wearing size: Size 3 diapers and 9-12 month clothes. 

Likes: He loves attention and is total little flirt with the sweetest smile.  He loves army crawling around the house and bugging the big kids. 

Dislikes: He really hates it when I do his G Tube and skin care every morning-not because it hurts, but because he can't roll over and play when I'm doing it.  He also hates his skin care routine because he strongly dislikes having his hands, arms, and head touched and moved around.  To get him to lay still and stop fighting me, I play a Youtube video on my tablet for him to watch while I'm taking care of his tube (he's a big fan of Peter Hollens, Lindsey Stirling, and Baby Einstein). 

Eating habits: He gets four bottles a day with 5 ounces of water and 3 scoops of the Alimentum formula which is concentrated for lower volume.  I start each feeding by offering the bottle and whatever he doesn't eat is tube fed.  He drinks approximately 50% of his formula.  He eats pureed baby food 2 times a day which I add a teaspoon of olive oil and a tablespoon of rice cereal to for added calories.  He had been doing well with gluten free baby puffs, but in the last month, has been throwing up every time he has anything more than purees.  I'm attributing that to being sick which makes him even more gaggy than usual. 

Sleeping habits: He takes a morning nap from about 9:30 am to 10:30 and an afternoon nap from about 1 pm to 3 or 4 pm.  He sleeps okay at night, but does still wake up several times.  He usually goes right back to sleep when I give him his pacifier.

 
Milestones: He finally learned how to sit unsupported!!  This was a milestone that we've been working on for months and he finally got strong enough to be able to do it.
    
Miscellaneous: He was sick for ALL of January with pneumonia and RSV.  It was a very long, very difficult month for both of us.  He was hospitalized for one night, had three emergency room visits, and saw a doctor several times.  He also was on three different antibiotics.  I'm so glad he's finally feeling better from that, but his lungs are already sounding junky again so I know that something else is starting up. 
We have started taking him to a different health care system because we felt that it was time for some fresh eyes on him.  I really loved some of his doctors at Mayo and we're going to miss them, but it's much better for all of his care to be at one place to avoid confusion so he has all new specialists now.  The best part is that his new primary care doctor is a genetic specialist and is very good at caring for medically complex children. 




Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!

 

Sunday, February 8, 2015

Feeding Tube Awareness Week

Today starts Feeding Tube Awareness Week!  This time last year, I had no idea that I would be raising awareness for Little Dude and hadn't even heard of Feeding Tube Awareness week.


This week, I will be posting about tube feeding here on my blog and on social media.  If you have any questions at all about tube feeding or Little Dude, now is the time to ask them!  There are no dumb questions!  Just remember, a year ago, I knew nothing about tube feeding either :)

And to close this blog post, here's a picture of my favorite tubie!



Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!


Friday, January 30, 2015

A Few of My Favorite (Tubie) Things!

In the 8 months since Little Dude got his G Tube, I've found some resources and products that have made this whole thing easier and wanted to share them with other tubie families as well.

Feeding Tube Awareness
The Feeding Tube Awareness foundation has SO much information available and also has a Facebook page where you can ask questions about tube feeding.  I love the Tubie gear that's available there too!  Little Dude has a Supertubie onesie, and I have an "I love a Tubie" bracelet that I wear all the time.


Granulotion
For the first few months after Little Dude got his G Tube, we battled constant granulation tissue that had to be burned off with silver nitrate sticks at the doctor's office.  When a new product called Granulotion appeared on the market, I ordered the free sample in hopes that it would help.  It didn't take more than a few days for me to be completely sold on it!  It gently got rid of his granulation tissue and, with daily use, has kept it from coming back.  I highly recommend this to every tubie!!  In a Tubie support group I belong to on Facebook, the reviews have been outstanding.  It may seem kind of pricey, but a 1 ounce jar goes a long way.
 
Tubie Pads
Tubie pads are a cute way to keep Little Dude's stoma healthy.  He has drainage from the stoma that irritates the surrounding skin and causes granulation tissue so we keep it covered with something to soak it up and keep the drainage from sitting on his tummy.  There are many places on Facebook and Etsy that make tubie pads.  We ordered from several different places before we found the pads that worked best for Little Dude.  Our favorite is Gotz GPadz on Facebook.

Tardis tubie pad from Gotz GPadz

My Tubey Books
My 3 older kids love reading these books, and I love that they introduce different ways of feeding children in a non-scary way.  Little Dude is a bit young to understand the books yet, but when he gets older, I think he'll enjoy reading a book about kids like him. 

For more special needs resources, you can visit my Special Needs Parenting page.


Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!

 

Friday, January 23, 2015

Loving My Body Even When I Hate It

I've always hated my mid-section.  I remember asking my mom if I was fat when I was 6 or 7 because I didn't like how much my stomach stuck out.  Even at my thinnest, I never had a flat stomach.  At 10 months postpartum with my fourth child, I have to be very careful how I dress so my stomach doesn't make me look pregnant.  After being pregnant four times, my stomach is saggy, wrinkled, and covered in ugly stretch marks.

Last week, Princess came in my room to ask me something while I was getting dressed and I saw her staring at my stomach.  After a minute, she asked me this question, "Mommy, why does your tummy look funny and fat?"

Ouch.

Don't you love how kids say exactly what they're thinking?

In that moment, I had a choice.  I could pass my insecurities about my looks on to my impressionable daughter or I could teach her that even when something doesn't look perfect, it can still be beautiful.

I smiled at her and said, "God gave me four babies that grew in my tummy and made it really big.  Do you remember how big my tummy was when Little Dude was still in it?"

Princess nodded.


"My tummy might look a little funny now, but when I see it, I think about how lucky I am that God gave me FOUR babies.  I love my tummy because it's where you and your brothers and sister grew until you were big and strong enough to come out."

Princess smiled as she said, "You're pretty lucky, Mommy!  It's good that your tummy looks like that because now you have me!"


So, do I wish my stomach was flat and not covered in stretch marks and wrinkles? You bet!  But, thanks to Princess's question, I can finally see my stomach as something other than ugly. 



Thursday, January 22, 2015

Where Have I Been?

Today is Princess's 7th birthday, and I'll be writing a birthday post about her soon (or eventually...hopefully before she turns 8). 

So far, I've failed miserably at my 2015 goals.  I haven't so much as started to think about doing any of the things on my list.

Here's why...


No, he hasn't been in the hospital all this time-he was actually only there for one night.  However, it's been a terrible year for him health-wise.  He started getting sick on December 31st and ended up with pneumonia.  Just for fun, he was on amoxicillin for a double ear infection when he came down with pneumonia.  The ER doctor switched him to a stronger antibiotic and in a few days, he seemed to be on the mend.  He had 2-3 good days when I was mentally cheering for myself for getting him through pneumonia without a stay in the hospital...and then he got RSV which is what landed him, you guessed it, in the hospital.  However, the doctor that read the x-ray mis-diagnosed him with worsening pneumonia despite being on his second antibiotic of the year, and put him on an even stronger antibiotic before discharging him from the hospital with retractions while breathing, a fever, and a high heart rate.  We took him to Urgent Care at a different hospital the next morning (January 18th), and they did what the first hospital should've done right away-run a test for RSV.  It came back positive and, while we've managed to stay out of the hospital, he's been at the doctor twice this week already because of worsening breathing and has been throwing up quite a bit.  Thankfully, the G Tube allows us to keep him hydrated by giving him small amounts of formula or Pedialyte more frequently.  The doctor told us that we just need to make it past days 5-7 and then RSV typically starts getting better.  Yesterday was day 7 so hopefully Little Dude will start improving now!  I miss my happy little boy.


Things that happen when your baby has been sick with pneumonia and/or RSV for 23 days....

Your daughter wakes up on her birthday and excitedly asks you where the treats are for her to bring to school today.  You hype up a package of oreos that you quickly dig out of your "sanity" stash before stuffing it into her backpack.

Your house is a disaster and your laundry is "this" close to being classified as a national disaster.

You have to call your mom on the way home from taking the baby to the doctor because you keep falling asleep while driving.

You have significant mom guilt over the fact that your three oldest kids have spent the last three weeks being shuffled from one person to the next while you are at the doctor's office, ER, or hospital with their baby brother.  The mom guilt is worse because it's your oldest child's birthday this month, and you keep remembering that Little Man's birthday last year fell right in the middle of a nine day hospital stay with Little Dude.

The extent of your social media presence is an occasional update for family on Facebook and quick pictures on Instagram (if you want updates on Little Dude, IG is where you want to be!)

It's January 22nd and so far this year, you've only left the house to go places with medical personnel and equipment.  And church.  Once, in between the pneumonia and RSV.

Your almost-potty trained 2 year old will have a regression so bad that you're going to have to start the whole process over again.  Someday.  Definitely not right now.

You keep thinking, "It can only go up from here, right?" and then remember that you have a medically complex child...




Friday, January 16, 2015

Little Dude - 10 Months

Age: 10 months


Weight and height: 16 pounds, 11 ounces and 28 inches long.  He lost a little weight while he was sick this past month.

Wearing size: Size 3 diapers and 6-9 month clothes. 

Likes: He's very sociable and LOVES attention.  He loves being on the floor to play and army crawl around and he's obsessed with paper, which is not good because he eats it and then chokes on it. 

Dislikes: He really hates it when I do his G Tube and skin care every morning-not because it hurts, but because he can't roll over and play when I'm doing it.  He also hates his skin care routine because he strongly dislikes having his hands, arms, and head touched and manipulated.  To get him to lay still and stop fighting me, I play a Youtube video on my tablet for him to watch while I'm taking care of his tube (he's a big fan of Peter Hollens, Lindsey Stirling, and Baby Einstein).  His sensitivity to the other kids had been disappearing, but being sick so much lately has set him back and he doesn't tolerate them being near him very well right now.

Eating habits: He gets five bottles a day with 5.5 ounces of water and 3 scoops of the Alimentum formula.  He drinks about 50% of his formula throughout the day, and the rest is tube fed.  He gets pureed baby food 1-2 times a day, and I just started giving him gluten free baby puffs which he seems to like.  
     

Sleeping habits: He takes a morning nap from about 9:30 am to 10:30 when I wake him up for his next feeding.  He's such a light sleeper that when I try to tube feed him so he can sleep longer, he wakes up anyways.  He stays up until after his 1:30 feeding and then sleeps until his 4:30 feeding.  He's dropped the third nap of the day and goes to bed around 8 pm at night after his 7:30 feeding.  
Milestones: He's getting better at sitting on his own and is able to do it for about 60 seconds now before tipping over.  He's really good at army crawling and leans to his right side to avoid putting pressure on his G Tube.  We're working on getting him up on his hands and knees, but he's not very interested in that.
    
Miscellaneous: January is a very busy month for Little Dude with MANY doctors' appointments at Mayo.  We will be at the clinic 1-3 times a week with him and he has multiple appointments on quite a few of those days.   




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