Monday, March 23, 2015

If Only Someone Had Told Me...

Being a parent is hard.  When I got pregnant with my first child, I read all the pregnancy books and a ton of parenting books.  None of them even remotely prepared me for the reality of being a mom.  Sure, friends and family try to warn you what it's going to be like to have a baby, but until you are there in the trenches, there's no way you can actually know.   



No one told me just how much poop, vomit, and other body fluids I would deal with as a parent, a lot of it with my bare hands and a few baby wipes.

No one told me that I would learn to survive on 3 hours of interrupted sleep and still get up and keep the kids alive the next day.  And no one warned me that I would live like that for 6 months straight after my youngest child was born. 

No one told me that the constant demands from four kids all needing something from me at the same time would be enough to make me want to hide, rocking, in a corner somewhere while my blood pressure skyrocketed.


No one told me that I would cry when my babies got shots or how much my heart would ache when my kindergartner tearfully told me that kids on the playground were making fun of her because of her hair.

No one told me that there would be days when I would sit down to eat supper with Hubby after the kids went to bed and realize that it was the first time I'd eaten or sat down all day.

And seriously...if someone had told me that I would have a baby with a feeding tube, a list of 12 diagnoses, and a possible genetic syndrome who screamed for his first 6 months of life, I would've run crying from the room.

When you read all of that, being a mom sounds awful.


But here's the secret...no one tells you how your heart nearly explodes with love when that tiny baby is placed in your arms.  No one tells you that one ounce of the good stuff in parenting is so amazing that it cancels out 2 tons of the bad stuff.  No one tells you that no matter how hard it gets, you'll just keep on going and know in your soul that it's worth it. 

Honestly, no one could have told me because until I became a mom, there's no way I could've understood. 



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

Saturday, March 14, 2015

Unprepared

So last week was a bit of an eye opener...

I woke up on Tuesday morning with a slight cold and some asthma issues.  Not a big deal, I just declared the day to be "Watch as Much TV As You Want While Mom Sits on the Couch and Does Nothing" Day.  Except that, a few hours later, I realized that my asthma was getting worse.  Fast.  I called my mom and asked her if she could come help with the kids because just keeping them alive that day was obviously going to be more than I could handle.  She quickly arrived and despite a nebtreatment and over a dozen puffs of my inhaler, my breathing was quickly deteriorating.  At one point, while sitting on the floor, I tried to stand up and was immediately very dizzy, to the point where I couldn't even keep my head up.  At that point, my mom called 911.  The kids thought it was cool when the ambulance came to our house and took mommy away.  I ended up staying the night in the hospital and my mom babysat for us until Hubby came home for the night.


So the point of that kind of boring saga was that I realized how unprepared I really am.  As I sat on the floor with an oxygen mask on my face while the EMTs got ready to take me to the hospital, all I could think of was how much I needed to tell my mom about taking care of Little Dude.  Thankfully, I had an outline of his feeding schedule written up already so I could just hand that over to her, but when it came to his tube care, his skin care, his breathing issues...that's all stuff that I do everyday and I know exactly what works and what doesn't work with him.  I know what to watch for and when to change something in his routines.  I know what therapies he needs to work on that day and how much he can handle.  I realized that I'm the only person who knows how to fully take care of him. 

Also, the thought that I could've been alone with the kids when I nearly passed out and was unable to even reach for my phone is a terrifying thought.  Thank God my mom was there when that happened.

Because of my severe asthma, I've often had to rely on others to help me out.  I hate having to be dependent on others and constantly ask for help, but I don't have a choice.  And now that I have four kids, one of whom is medically complex, it bothers me even more.  My asthma has nearly killed me on several occasions, and I've always been very aware that I have a potentially fatal disease.

If something were to happen to me, I need to have the peace of mind that Little Dude will continue to receive all the care he needs, but his care is complicated and I'm the only person who knows all of the details.  Over the next week, I'm going to put together a word document detailing everything I can possibly think of regarding his medical conditions, his feeding, the storage of his supplies, etc and print it off so anyone who needs to take care of him can do so.  I already have a binder with an overview of his medical history and the names and contact info of all of his specialists, but I definitely need more information on the day-to-day part of his care.  Every month or so, I'll need to update the word document, but will be able to easily do so and then print off an updated copy. 

And just to end things on a good note, I put new batteries in our ball popper and Little Dude was a huge fan :)






Saturday, March 7, 2015

Little Dude - 12 Months

Age: 12 months


Weight and height: 17 pounds, 6 ounces and 28 inches long.  For comparison, at a year old, Princess was 17 pounds, 13 ounces and 29 inches long, Little Man was 20 pounds and 31 1/2 inches long, and Star was 17 pounds and 29 inches long. 

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

My little monkeys wearing matching shirts!

Likes: He loves attention and pretends to be shy now by ducking his head into my shoulder when someone smiles back at him.  He likes to put things in something and take them back out again (for example, putting toys in a bucket).  He loves army crawling all over the house, and we have to be super vigilant about things on the floor because he puts EVERYTHING in his mouth and chokes easily.  At least several times a day, you can find me hurdling furniture to sweep his mouth with my finger and pound on his back.  I've been very close to calling 911 because he was starting to turn blue, but thankfully, I've always gotten him breathing again before it gets to that point. 

Dislikes: He doesn't like having things taken away from him and will scream and cry.  For example, here's his face after I took a crayon away from him:

A photo posted by Hannah (@supermommyornot) on

Eating habits: BIG news here!  For the last several weeks, Little Dude has been trying to catch up after not growing since November due to being sick so much.  When he was sick, his motility slowed down so much that I had to vent him at every feeding because of the extra air in his stomach (which happens when food sits in the stomach longer).  When I would vent him, the entire last feeding would still be in his stomach, even several hours later.  His GI doctor diagnosed him with illness-induced gastroparesis (paralysis of the stomach) which has since resolved itself. Now, he's actually been HUNGRY and asking for food, and then more food.  It still blows my mind that he cries because he wants food.  I actually had to increase the amount of his feeds because he was finishing them and crying for more.  I've hardly had to tube feed him at all since he started this.  I know that it may not last, but we'll take what we can get!  
We're in a transition phase of trying to lessen the amount of formula he takes in lieu of solid foods.  Right now, I'm still tweaking his feedings, but the goal is 4 solid food feedings (baby food) a day with several opportunities to practice eating table foods as well and then however much formula he wants to drink after that.  It's slow going since he has such a strong gag reflex and chokes easily, but I know he'll get there eventually.  He likes eating solid foods, but hasn't been very happy about getting less bottles.
Because we don't know for sure if he has any food allergies or Celiac's Disease (we were told that a test showed a strong possibility of it), for the time being, we are not giving him gluten, dairy, or soy.  He'll be having more testing done soon to determine what foods are safe for him to eat.   

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: No new milestones this month, but he's been getting better at sitting unsupported.  We're currently working on getting him to crawl on his hands and knees instead of army crawling on his tummy because being on his tummy that much is irritating his G Tube site and causing breakdown of skin.  He wears a special belt when he's on the floor now and that seems to be helping to protect his G Tube, but we still need to get him up off of it.  
    
Miscellaneous: His therapist has put his development at an 8-9 month level which seems very appropriate to me.  He may be a little behind, but he's making progress and that's what's important.  Every once in a while, I get a little sad that he's so far from where my other kids were at this age, but my best friend helped me get some perspective on that that's really helped.  She pointed out that he's my last baby, and I get to keep him as a baby a little bit longer.  

I tallied up Little Dude's first year, medically speaking.  Some of the numbers, I wasn't 100% sure on since I didn't start marking everything down in my day planner until we were several months in to his medical journey.

Procedures (included 1 surgery and 2 sedations): somewhere between 15-20
Blood draws: somewhere between 10-15
Hospital stays: 5 (14 days total)
ER visits: 8
Doctor appointments and therapies: 80

That's more than my other three kids combined and that's just in his first year!

Don't forget to check out the first annual Little Dude's Birthday Blessings Bash that takes place the whole month of March!  


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

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!