Little Dude's Latest Accomplishment

If you follow me on Instagram, you probably already know this, but for those of you who don't, Little Dude has some big news!!

He is officially a supertubie graduate!!!

He kept getting infections on his g tube, and yesterday I brought him in for his second infection in a month.  His doctor and I discussed it and decided that the cons of keeping it in outweighed the pros at this point.  He hasn't used it since March 28th except for meds (which he can also take orally).  The original plan was to leave it in through cold and flu season just in case he regressed, but his doctor and I are both confident that he will be just fine without it.  So without further ado, the doctor pulled it out, we stuck some gauze on the site in case of leakage, and just like that, he was tube free!

So proud of himself!

His stoma has already closed up most of the way and there hasn't been any leaking so far.  I was a little nervous about feeding him after he had it removed because, hello! hole in the stomach!  But he's done just fine and there haven't been any messes yet :)

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.

Little Dude was not as happy about his new pseudo-personalized outfit as I was. #blogpseudonym #nothisrealname #supermommyornotlittledude #11monthsold #littledude

A photo posted by Hannah (@supermommyornot) on Feb 14, 2015 at 12:05pm PST

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.

Watching traffic. #supermommyornotlittleman #4yearsold #supermommyornotstar #2yearsold #kidsinawindow

A photo posted by Hannah (@supermommyornot) on Feb 13, 2015 at 12:39pm PST

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.

Today marks the start of Feeding Tube Awareness week! Do you have a question about tube feeding or Little Dude? Feel free to ask! #feedingtubeawareness #supertubie #tubie #tubiemom #feedingtube #gtube #supermommyornotlittledude #iloveatubie

A photo posted by Hannah (@supermommyornot) on Feb 8, 2015 at 8:04am PST

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!

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

You can read an updated version of this post on my new blog, Sunshine and Spoons!

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!

 

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!

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.

You can read an updated version of this post on my new blog, Sunshine and Spoons!

The Only One?

I recently read this article about a 12 year old boy who is starving because he can't eat and it was upsetting to me.  First of all because this boy and his family have to go through something like this and secondly because of this statement in the article: "He lacks all impulse to eat or drink. And he might be the only person in the world burdened with this bizarre medical condition."  (Italics mine)

The only person in the world?  Really?  Apparently, the reporter didn't bother to do much research on the subject other than on the boy featured in the article himself.  I belong to a support group on Facebook called "Pediatric Feeding Disorders/FTT/GERD/Kiddos with Feeding Tubes" with over 6000 members.  Six thousand members.  That's six thousand parents and caregivers of children with feeding issues.  It's estimated that approximately half a million people worldwide have a feeding tube.  The lack of understanding for pediatric feeding disorders is astounding and quotes like the one in the article only perpetuate the lack of awareness.  

Eight month old Little Dude is one of the many children who have a feeding disorder.  He rarely shows hunger cues and, if it were not for his strict feeding schedule, would go all day without eating.  Every three hours, I make a bottle and work with him to get him to drink it.  Sometimes he drinks the whole thing, but more often then not, he drinks very little or none so I have to feed the rest of his formula through his feeding tube.  Despite my constant efforts to feed him orally, he gets about 50% of his food via his G Tube.  After running dozens of tests, his doctors still have no idea why he doesn't eat.  The lack of diagnosis means that it can be hard to get people to take his feeding disorder seriously.  I've been accused of overreacting or just not trying hard enough to feed him.  Some people see the feeding tube as the easy way out (Sorry, but having a hole in your child's stomach and dealing with tubes, syringes, infections, etc, is actually NOT easy).  Let me tell you, until you have watched your child waste away and starve in front of you, you cannot understand how absolutely heart wrenching that is.    

Little Dude at 2 1/2 months old, shortly after having his G Tube placed

Little Dude at 7 months old, 5 months after getting his G Tube

The article concludes with a plea from the parents.  They're desperate to find others going through the same thing as them both for the support and to help them find answers.  It's heartbreaking that they think they're alone in this struggle.

So why aren't they aware that so many others are dealing with similar issues?  Probably because pediatric feeding disorders are not usually talked about.  The general consensus is that children who won't eat are spoiled and manipulating their parents.  Telling someone that your child has a feeding disorder opens you up to a lot of criticism and critiquing of your parenting skills.  Not being able to feed your child, the most basic of parental care, makes you feel like a complete failure as a mother or father.  Parents of children like my Little Dude often hear statements such as "He'll eat when he gets hungry enough.  Babies won't starve themselves!" or "Let me take her home for a while.  I'll get her to eat!"  Both of these comments are untrue and hurtful because they only make a parent who is struggling to feed their child feel even worse than they already do.

If you have a child with feeding problems, know that you are not alone.  There are many groups and pages on Facebook for support and information, internet forums and websites (www.feedingtubeawareness.com is a good place to start and has many resources), and some areas even have local groups where you can meet other parents with similar issues.

If you are blessed to have children who eat normally, don't take them for granted and please don't jump to conclusions or judgement when you see another parents struggling to feed their child.  You can find tips on how to support a parent with a child or children with feeding disorders here.       



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

Little Dude - 8 Months

Yes, I know I skipped Little Dude's 7 month update. Oh well, I wasn't aiming for mother-of-the-year so I'm fine with it!   


Age: 8 months

Weight and height: 16 pounds, 4 ounces.  I'll find out his height at his 9 month checkup next month. 

Wearing size: Size 3 diapers and 6-9 month clothes.  He must have had a growth spurt because all of a sudden, his 3-6 month clothes were too short for him. 

Likes: He's very sociable and LOVES attention.  He loves blankets and snuggling.  His favorite toys are ones that play music.  He LOVES rolling over and has figured out that he can get places by doing so. 

Dislikes: Being where he can't see me.  He also really hates it when I do his G Tube care every morning-not because it hurts, but because he can't roll over and play when I'm doing it.  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 Baby Einstein, Peter Hollens (his favorite is Ashland's Song-he smiles whenever I turn it on), and Lindsey Stirling. 

Eating habits:  He gets five 5.5 ounce bottles a day which means that I don't have to stay up late to do the last feeding of the day while he's asleep anymore.  He takes about 50% of his formula by mouth and the rest is tube fed.  He usually gets baby food three times a day-2 tablespoons of rice cereal in the morning and 2 tablespoons of baby food each for lunch and supper.  His excema flared up when I gave him applesauce so after trialing it again with the same results, apples are on his do-not-eat list.  He does seem to have some issues with staying full longer than he should.  He was able to eat a 4 ounce jar of baby food in a sitting and so we tried cutting back on his formula since he was eating so much food, but he ended up losing 11 ounces in 6 days when we did that so for now we're focusing on formula.  He also stays full a lot longer when he eats baby food and isn't able to handle taking formula for long periods of time after eating (longer than normal) so the most baby food I give him at a time is 2 ounces which is still pushing it a little.  He is developing the same eating habits for baby food as he has for formula-sometimes he eats it well and sometimes he doesn't.
     
Sleeping habits: His sleeping habits have seriously improved.  It kind of happened overnight (pun intended) when I moved Star out of the crib and moved him in about a month ago.  That night, I laid him down awake and he fell asleep.  ON HIS OWN!!!!  Ever since then, I've been able to lay him down awake in the crib (he won't do it anywhere else) most of the time for naps and bedtime and he will fall asleep, usually without crying too much.  Every once in a while, I still have to rock him to sleep, but I find that I can appreciate that a lot more now that I'm not spending literally half my day rocking him.

That smile kills me with cuteness

Milestones: He has SIX teeth already!  They didn't seem to bother him much when they came in so I didn't really notice until they had already popped through.  He has two on the bottom and four on the top.  He's also rolling over like crazy in both directions (right and left although he still prefers rolling to the left), and I saw him push himself up on his arms the other day.  We've been practicing sitting unassisted a LOT (I sit behind him with my hands close enough to catch him without touching him).  He's not ready to sit on his own, but at he's getting better at keeping his balance for short periods of time.    
    
Miscellaneous: He's gotten sick twice in the last month and a half which, obviously, is bad, but, he managed to stay out of the hospital both times so that's awesome!  His G Tube site looks great right now, thanks to the Granulotion and thankfully his Strep has not come back again so no infections lately.  We're watching it closely though and if there's any change in his stoma, we'll be taking action immediately because it worsens so quickly. 



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

Random Monday - November 3, 2014

If you haven't seen it yet, go read my review on "Their Name is Today" by Johann Christoph Arnold and enter to win a copy of the book for yourself.  But only if you have children.  Or grandchildren.  Or students.  Or nieces or nephews.  Or come in contact with children at all.

I have three of the four kids' winter clothes unpacked.  Little Man will just have to freeze in his short sleeved shirts until I get around to re-working his closet too.  Or he could just listen to his ever-so-smart Mommy and wear a sweatshirt instead of whining about how cold he is.

Speaking of switching out the kids' clothes, Little Dude outgrew his 3-6 month clothes and I had to get the 6-9 month clothes out for him.  I may or may not have cried a little while I was packing away his 3-6 month clothes because first of all, there's this and also because he didn't get to wear a lot of his clothes because they weren't G Tube friendly.  I know it's a small thing, but it still bothered me that he missed out on getting to wear some of the clothes passed down from his big brother because of his G Tube.

If you follow me on Instagram, I apologize for the repeat pictures.  But seriously, these kids are so cute, I don't think it'll kill you to look at them again :)

We don't celebrate Halloween for religious reasons, but we still let the kids dress up for school.  I saw a pizza costume at Target and knew that Little Man had to have it as he's insanely obsessed with pizza (he'd be thrilled if he could have it for all three meals and a snack everyday).  But the price tag made me back away shaking my head.  So instead, I headed over to Hobby Lobby and picked up some felt and made one for him.  It was super fast to sew up and turned out really cute.  He absolutely loves it and begs to wear it everywhere we go.
 

I have a weird sense of humor.  It's genetic.  My whole family is weird.  But even I know it was a little pathetic that I spent several days looking for Little Man's dress-up cowboy hat just so I could get this picture of Little Dude...

Folks, meet Walker Texas Ranger.  Hahahahahahaha!!!!  I slay myself...  *crickets chirping*  Okay, fine.  At least I thought it was funny.

Hospital Stay #4...Can We Be Done Yet?

This past week was...not great.  Princess came down with a nasty respiratory virus on Saturday (after she'd been to her cousin's birthday party and infected four of my nieces and nephews, of course).  I isolated Little Dude as much as possible from the rest of the family and washed my hands constantly, but the inevitable happened.  On Monday night, I put him to bed around 7:30 pm.  He was breathing normally (for him, at least), not coughing, not sick at all.  At 8:30, I checked on him and noticed that he was wheezing considerably.  At 11:00, I got his last feeding ready and started to hook up his tube so I could feed him, but realized that he was breathing very fast and hard and wheezing heavily.  He was having mild retractions and was really struggling to breathe.  Naturally, it was Hubby's night to work so I was home alone with four kids.  I called my mom and she walked across town to my house in the middle of the night to stay with the three older kids while I took Little Dude to the Emergency Room.  Once there, they did a chest x-ray and monitored his o2 levels and heart rate.  Neither one was very good, and they decided to admit him for observation in case he needed oxygen.  We didn't get into a room upstairs until 6:30 the next morning.  Little Dude had only slept for a few hours all night and I hadn't slept at all so we both fell asleep when we got up there.  Except that Little Dude wasn't feeling well so he woke up 45 minutes later and that was pretty much it for my sleep the rest of the day.

Little Dude would only sleep while I was holding him.

That day, he seemed to worsen, becoming lethargic and tired with a decline in his breathing so his doctor decided to keep him overnight.  It was a good thing we stayed because he did end up needing oxygen that night.  FYI, we found out the hard way that he absolutely HATES the nasal cannula!  He screamed, cried, and refused to settle down for 3 hours while pulling it out every few minutes, even after the nurse had taped it on.  It was obvious that that wasn't going to work so she switched him to blow-by oxygen which meant aiming an oxygen hose at his face at all times.  This helped him sleep and keep his oxygen levels up during the night.

The Child Life department brought him a swing and an exersaucer to play with.  He loved them both, but could only spend short amounts of time in the exersaucer because he got tired out too quickly.

We'd been hoping to go home the next day, but since he'd needed oxygen during the night, he had to stay another night to be sure he could sleep without it.  The doctor ordered saline nebs for him which helped loosen up the junk in his lungs.  Thankfully, that afternoon, his condition improved and he was able to sleep all night without oxygen.  His oral feeds went way down, but that was expected since he wasn't feeling well.  However, thanks to the G Tube, he was able to get the full amount of feedings in anyway.  He did throw up several times (thank goodness he likes baths!), but not enough to worry about dehydration.

Little Dude was discharged from the hospital last Thursday morning and we were both happy to be going home.  When I walked in the door at my sister's house to pick up the kids, Star was elated.  Not to see me...she was excited to see her baby brother.  That afternoon, she refused to nap because she couldn't see him while laying down and kept asking to go say hi to him.  It's so sweet to see the bond she has with him, even though he's turned her life upside down.  I can see those two being best buddies and partners-in-crime when Little Dude gets older.

Oh, and sweet little Princess recovered quickly after resting all day Sunday.  I was so happy that she felt better so quickly.  She has a residual cough at the moment, but I anticipate that clearing up pretty soon.

Little Dude-6 Months

Age: 6 months 

Weight and height: 14 pounds, 12 ounces and 25 1/4 inches long which puts him in the 6th percentile for weight and the 4th percentile for height.
Here are the other kids' weights at 6 months of age for comparison:
Princess: 13 pounds, 9 ounces
Little Man: 17 pounds, 4 ounces
Star: 14 pounds 4 ounces

Wearing size: Size 2 diapers and size 3-6 month clothes.  I've been putting him in some 6-9 month clothes just because we don't have a lot of 3-6 sized clothes that are compatible with tube feeding, but they're still pretty big on him. 

Likes: He's very sociable and LOVES attention.  He loves blankets and snuggling.  His favorite toys are ones that play music.  He also loves playing with his pacifiers and paper (which for obvious reasons, isn't a baby-approved toy).

Dislikes: Not being entertained constantly.  He fights sleep like it's the worst thing in the world, but occasionally will fall asleep in his swing or without crying while being held.  He's also not a fan of physical therapy.

I can't get enough of this little face!

Eating habits:  He's still getting six 5 ounce bottles in a 24 hour period.  He eats about 50% by mouth overall and I tube feed him the rest.  His feedings vary-sometimes he won't touch it the bottle and other times, he'll drink the whole thing.  We're about to add rice cereal to his diet.  His GI doctor recommended not giving him gluten or oats for the time being.  We'll be introducing fruits and vegetables within the next month, but will be taking it slow to make sure he tolerates the new foods. 

Sleeping habits: He's taking longer, better naps now.  He still has a couple of days a week where he can't seem to fall asleep or stay asleep, but at least those days are fewer.   He goes to sleep for the night between 8 and 9 and usually sleeps until 7 am. 

My little Supertubie!

Milestones: He rolled over from his back to his stomach for the first time on August 31st and has done it several times since then!  Yesterday, during his G Tube change at the clinic, he started chewing on my finger and I realized that both of his bottom teeth have popped through already.  I'd just checked for teeth on Monday and didn't feel anything so was surprised to feel two.    
    

Miscellaneous: Around 5 1/2 months, I noticed that he wasn't able to hold his head up as well as before and that he often tilted it to the left as if he couldn't keep it straight.  You can see this in the pictures in this post.  This was concerning since just a few weeks before, he'd been doing so well with his neck control.  It was decided to increase his therapy to biweekly home visits instead of monthly and I have a list of exercises to do with him at home.  His physical therapist diagnosed him with mild torticollis.  He isn't even close to sitting up, but we're working with him to strengthen his muscles.  His fine motor skills and social skills are awesome though!

The pictures throughout this post are from Little Dude's 6 month photo shoot at Portrait Innovations yesterday.  That morning, he had a G Tube change, silver nitrate treatment on some granulation tissue and in the afternoon, he had his 6 month checkup and 3 shots.  He only napped for about 45 minutes all day, so when it came time for his pictures after both of his medical appointments, I was pretty sure he would be crying the whole time and wouldn't cooperate.  I was completely amazed that he smiled the WHOLE time we were there and the sweetest baby ever.  He charmed the socks off the photographer.  :)

 

Random Monday - September 1, 2014

First of all, Happy Labor Day!!  We didn't have any plans today which was good since Princess woke up throwing up this morning (apparently, she didn't get the memo about not getting sick the day before the first day of school), and Little Dude hasn't been doing well lately.  His cough and wheezing have been getting worse over the last few days, and he's miserable and unable to relax for more than a few minutes at a time.  He cries if he can't see me and it breaks my heart because I can tell that something's not right with him right now.  I'm watching him closely and hoping he doesn't have to go in to the doctor before his three appointments next week.

I froze sweet corn from my in-law's farm on Saturday.  The two littlest munchkins "helped" me. 
 


My mom let me and my siblings get a library card after we'd read 10 books on our own.  I realized last week that I'd kind of dropped the ball on that one since Princess has been reading for a while now.  So while we were at the library for storyhour on Wednesday, she got her very own library card.  She insisted on carrying it home before giving to me to keep in my wallet for safekeeping.


I can't believe school starts tomorrow already!!  I'm hoping Princess feels better in the morning because it's no fun to have to miss the first day of school.  Little Man's preschool class doesn't begin until next week so at least we have a week to adjust to having Princess at school before throwing another one in the mix. 

Princess went with my mother-in-law on a trip this weekend to visit Hubby's grandma and sister.  She had a blast, especially since they got to go shopping.  On the way home from picking her up on Sunday, she sighed happily in the backseat and said, "It's good to get away from your family once in a while."  Word.

I asked Princess if she missed me while she was gone.  She thought for a few seconds before answering, "No, I don't think I missed you."  *sob*  Well, at least the other kids still love me, lol. 

I belong to a closed group on Facebook for parents of children with feeding disorders, GERD, feeding tubes, etc.  The group is a place for parents to ask questions, vent, and support each other as we care for our special needs children.  So, imagine the horror when it was discovered that a question and picture asked by one of the moms had been anonymously screen shotted and sent to a site where it had gone viral making fun of the "stupid" mother.  There are several things wrong with this.  First of all, the group is closed for a reason-because most people can't understand what it's truly like to have a child with a feeding disorder and parents need a safe place to ask questions from others who are walking the same path.  Secondly, it may seem like a "dumb" question to some, but honestly, when you're dealing with special needs, medically complex children, every little thing could possibly mean something big so parents tend to be extremely vigilant with noticing every change in their children.  And yes, there are rare skin conditions that can cause changes like that.  It's better to ask a seemingly silly or obvious question and be reassured that everything is okay than to wonder and worry.  This to me, looks more like a concerned, observant mother than a stupid one.      

Pros and Cons of G Tubes

I get mixed reactions about Little Dude's G Tube.  Some people are happy he has it because it ensures that he's getting the nutrition he needs or just think it's really cool.  Others are horrified about it or sad that he has to have it at all.  Personally, I tend to waver between the two reactions so I put together a list of pros and cons.

Pros:

• Little Dude's not starving anymore!  Huge plus, obviously.
• I can feed him while he's sleeping.
• I can give meds through the tube and not have to worry about him spitting them back out.
• Cute tubie pads :)  I love accessorizing my kids with cute handmade things so when I found out that the tubie pads Little Dude needs to keep drainage from irritating his skin can be made in fun designs, I had some fun picking out cute ones for him.  I got his from Gotz GPadz on Facebook.

Little Dude modeling his Doctor Who tubie pad.

• A G Tube is much less stressful than an NG tube, in my opinion.  An NG tube (a tube that goes down the nose into the stomach) has to be taped to the face, can easily be pulled out, and is traumatic to replace.  Little Dude pulled his three times in the five days he had it while at the hospital and I knew there was no way we were leaving the hospital with it, especially with a curious toddler at home.

Little Dude with an NG tube at the hospital

Cons:

• Well, there's this tube going through a hole in my baby's stomach...not crazy about that.
• I worry about the tube coming out.  I don't even like to change my 6 year old's earrings, how am I going to put a G Tube back in?  If it comes out at home, taking him to the doctor to do it isn't an option because we have to drive 45 minutes to the closest doctor who can do that, and the stoma closes rapidly.  Thankfully, the chances of it popping out are actually pretty slim. 
• I spend a lot of time cleaning the extension tubes and syringes for feeding Little Dude.  You haven't lived until you've pushed soapy water through an extension tube only to have the other end fly up and shoot water all over like a runaway hose.  
• Granulation tissue (tissue that grows around the stoma to try to "heal" it) sucks.  I'm trying out a new product called GranuLotion to get rid of it right now, but usually Little Dude's granulation tissue has to be cauterized with silver nitrate sticks. 

 

For more information on feeding tubes, visit www.feedingtubeawareness.com

 

 

Little Dude - 5 Months

Age: 5 months

Sorry for the bad picture.  No camera cord yet so I had to use my tablet for his picture.

Weight and height: Little Dude 13 pounds, 0.5 ounces.  Not sure how long he is since we do weight checks once a week, but height checks are only during his regular checkups :)  I'm guessing between 24 and 25 inches long.

Wearing size: Size 2 diapers and 3-6 month clothes.  He must have had a growth spurt because one day the 0-3 month clothes fit him fine and the next day, they were all too short on him.  A lot of the 3-6 month stuff is still baggy, but if he keeps growing the way he has been, they'll fit him soon!

Likes: He's not a fan of being swaddled anymore, but still loves having his blanket around him and near his face (don't worry, I move it when he falls asleep!) when he's going to sleep.  He loves playing with and chewing on blankets too so they make a great toy too.  He likes sitting in the walker and jumperoo with a blanket tucked around him for support as he gets tired pretty easily.   He loves the standing position and has very strong legs.  He absolutely loves when people talk to him and smiles pretty easily now.

Dislikes: Not being entertained or held constantly.  He still HATES going to sleep and will scream and fight like no other baby I've ever seen. 

Eating habits:  Because his weight gain was plateauing, we increased his feeds to 5 ounces every 3 hours  (6 bottles total in a 24 hour period).  He'll eat a few ounces at a time and will sometimes finish a whole bottle, but usually he loses interest and refuses to drink the whole thing.  Whatever he doesn't take by mouth gets fed through his G Tube.  I tube feed his last feeding of the day so I don't have to wake him up since it's late at night after he's gone to bed.

Sleeping habits: He's napping a little better during the day.  I got a sound machine which seems to help him sleep a little longer.  He usually takes 3 naps a day-a shorter one in the morning and in the late afternoon and a longer one in the middle of the day.  He's been sleeping through the night (cue the hallelujah chorus!) for the last few weeks and is asleep for the night between 8 and 9 pm and sleeps for 10-12 hours.  He gets his last feeding of the day around 11ish and I tube feed that one so I don't have to wake him up.  It's amazing how everything doesn't seem quite so bad when you're getting decent sleep!

Milestones: He loves playing with toys and reaches for things as soon as he sees them.  He can roll over from his stomach to his back and Princess swears she saw him roll over from his back to his stomach too.  I haven't seen him do that yet, but he does barrel rolls.  He seems to be basically caught up developmentally!     


Miscellaneous: He's doing so much better than he was!  He has longer periods of time now when he'll be happy if I set him down and walk away.

August: The Easy Month

August was supposed to be our easy month, our month off from doctors and diagnoses and tests.  The only appointment Little Dude had scheduled this month was a therapy evaluation on August 1st (they're going to monitor him with monthly home visits, but he doesn't need regular therapy other than that.  Yay!) and we weren't expecting any test results this month.

I really need to quit getting my hopes up about stuff like this...

Little Dude started a 3 week round of antibiotics in late July to treat a bacterial infection in his lungs.  After a week, I noticed an improvement in his coughing fits.  A few days before he finished the antibiotics though, I noticed an increase in his coughing, choking, and breathing difficulties.  As his condition fluctuates a lot, I didn't think much of it-just increased his nebs and kept an eye on him.  Then, on Tuesday night, he started having a really hard time breathing and by Wednesday afternoon, a fever had joined the party.  By that evening, he'd gotten much worse so I decided to take him to the doctor Thursday morning.  Little Dude barely slept that night and was absolutely miserable.

The next morning, I woke up to find that I was sick with chills, fever, stuffy nose, sore throat, and aches all over.  I could barely get up, but fixed a bed on the living room couch and moved Little Dude's whole operation over there so I could rest while caring for him.  I called the doctor and as soon as they heard that he was sick and having problems breathing, they said to bring him over as soon as possible despite the fact that the doctor was booked all day.  I was in no condition to leave the house so my mom came over to take him and a note with all his info to the doctor for me.  I passed out as soon as she left and slept until she came back (I slept through 3 phone calls from her even though the phone was right next to my head, whoops!).  Probably not the best thing since I honestly have no clue what the other three kids were doing during that time, but no one got hurt or destroyed anything.  Thankfully, that nap was all it took to get me feeling just a smidge better because Little Dude came back with instructions to head to the ER.

I packed an overnight bag for Little Dude and me, and my dad drove us up to the ER while my mom stayed with the kids (Hubby was sleeping since he was in the middle of a run of night shifts).  I was so glad my dad could drive us since Little Dude needed someone in the backseat with him to monitor his breathing and choking.   

We spent the afternoon at the ER, where Little Dude had an x-ray of his lungs that showed that he had pneumonia.  They tried to start an iv for antibiotics, but absolutely couldn't get one in nor could they get the blood they needed for a blood draw.  Little Dude has impossible veins, and the only way to get an iv in him is when he's sedated.  After spending over 40 minutes futilely poking my poor baby, they decided to give him the antibiotic in a shot instead.  If I'd known that was an option, I would've asked for it immediately since I knew they weren't going to be able to start an iv.  It took two techs and a long time to get just enough blood for the labwork.

Around 6 pm, Little Dude was admitted, and we were finally sent upstairs to a room on the peds floor which incidentally was right next door to the room he had in May.  He spent the night there for observation.

Because Little Dude was keeping his O2 sats above 90 on room air, he was able to come home the next day with an oral antibiotic.  If he didn't have his G Tube, they would've kept him longer because of concerns for dehydration, but thankfully, we can get plenty of fluids in him even though he's barely taking any formula by mouth right now.      

So, I'm just a little freaked out about cold and flu season now.  Little Dude's lungs and immune system are not in great shape and both Princess and Little Man will be bringing germs home from school this year.  If you want to find me this winter, I'll be the crazy lady with lysol in each hand and a "don't touch!" sign above the baby giving the stinkeye to everybody with a runny nose.  

Random Monday - August 11, 2014

First of all, today is my dad's birthday!!!  I probably shouldn't say this but he's 55 years old today :)  Hello, Senior Discounts!

Vacation Bible School at our church starts tonight.  My sister is going to come over to my house each evening to watch our younger kids and I'll take the five older ones to VBS.  I'll be helping with the junior high class so will be staying the whole time.  The kids are super psyched about it, but Little Dude has been running fevers, throwing up, and not feeling good periodically the last few days and Princess is starting to complain about not feeling good too so we'll see how they're doing tonight before I decide for sure if they can go.  I'd hate for them to miss it, but you just can't control when they're going to get sick. 

We got our tubie pads from Gotz GPadz today!  I've been looking for some that are thin and don't have tight, rough stitching around the edges and opening in the middle.  These fit the bill plus the price and shipping time were great.  I got an assortment of 10 for Little Dude.  Since my (Whovian) sister has helped me so much with Little Dude since he came home from the hospital in May, I knew I had to get the Tardis ones for him in honor of her.   :)  

Little Dude modeling one of his new tubie pads.

Have a great week, everybody!

World Breastfeeding Week

I know I'm a little late to the party since World Breastfeeding Week ran from August 1-7th, but the constant Mommy Wars over the best way to feed your baby this past week really got me thinking.

First, let me fill you in on my history with breastfeeding...

Finish reading this post at Sunshine and Spoons!

Little Dude - 4 Months

I finally decided to go ahead and publish Little Dude's 4 month update without his official picture since I'll be published his 5 month update soon.  I've had this written since he was 4 months old and took his picture at the same time.  I'll put the picture in when I get a new cord for my camera.

Age: 4 months

Weight and height: Little Dude is a hefty 12 pounds, 5 ounces and 24" long!  He's in the third percentile for weight (yay, he's finally back on the chart!) and the eighteenth percentile for height.  I'm loving his chubby little legs :)
For comparison, here are the other kids' stats at 4 months:
Princess: 11 lbs, 5.5 oz and 24" long
Little Man: 14 lbs, 11 oz and 25.75" long
Star: 12 lbs, 4 oz and 24.5" long

Wearing size: Size 1 diapers and 0-3 month clothes which finally fit him pretty well.  

Likes: Being swaddled in his new Aden and Anais muslin swaddles.  His flannel swaddle blankets are still his special blankets, but he gets overheated very easily and so I had to switch to something lighter for swaddling him this summer.  He loves the standing position and has very strong legs.  He enjoys being in the jumperoo for short periods of time with a blanket tucked around him to keep him upright.  He's a very sociable little guy and, if he's in the right mood, will give you the biggest smiles if you talk to him.

Dislikes: Not being held all the time (I've tried different baby carriers for him with no luck), going to sleep.

Eating habits:  His eating habits have improved over the last few weeks, although I'm hesitant to say he's "getting better" since we know from experience that his eating fluctuates a lot.  It has been encouraging to see him actually show hunger cues and want to eat sometimes, even if he still doesn't take enough by mouth for proper growth.  He gets 4 ounces of formula every 3 hours during the day for a total of 6 bottles.  Whatever he doesn't take by mouth gets fed through the G Tube. 

Sleeping habits: He doesn't usually nap well during the day.  If I set him down, he wakes up almost immediately.  He'll stay asleep longer if I hold him, but still doesn't nap as long as he needs to.  Sometimes, he'll have a good nap where he'll stay sleeping for over an hour after I lay him down, but unfortunately, that doesn't happen everyday.  He usually is asleep for the night by 8-9 pm.  Since he's 4 months old and has been gaining weight so well, the pediatrician okayed him to sleep through the night without a feeding.  He usually still wakes up between 1 and 3, but instead of feeding him, I put him back to sleep.  When he wakes up around 4:30 am, I feed him and then we both go back to sleep until between 6:30 and 7:30.

Milestones: He's smiling and "talking" and loves interaction.  He clasps his hands together and brings them to his mouth and will also grab things and try to get them in his mouth too.  He's just started purposely reaching for things whereas before he would only grab them if they happened to touch his hands.  He holds his head up pretty well during tummy time.  He has very strong legs and loves being in a standing position.  Developmentally, he's at about the level of a 3 month old and seems to be making good progress towards catching up.  He will be evaluated for occupational therapy to see if that would be useful to help him achieve the goal of being developmentally on track. 

Miscellaneous:  He can be a sweet little guy, but still a very challenging baby to care for because he cries so much and needs to be held.  After confirming tracheomalacia during a bronchoscopy, the pulmonologist instructed us to "spoil" Little Dude because he has a hard time breathing and often chokes when he's crying.  



Thanks so much for visiting Supermommy!...Or Not.  I'd love for you to like me on facebook" and follow me on Instagram!   





    

9 Tips For Moms of Special Needs Children

I still have a lot to learn about having a child with special/medical needs, but I have learned a few things since Little Dude was born.  They're things I wish I'd known right from the start so I thought I'd share them with you.

You can read an updated version of this post here on my new blog, Sunshine and Spoons! I hope to see you there!

Thanks so much for visiting Supermommy!...Or Not.  I'd love for you to like me on facebook" and follow me on Instagram!  


 

Sometimes...

Sometimes when I look down at my peacefully sleeping baby boy, I like to pretend that everything is fine.

I pretend that he doesn't have a tube in his stomach to help him get enough to eat so he can grow.

I pretend that he doesn't have a list of 13 different diagnoses and a 6 page care plan with the highlights of his medical history.

I pretend that he doesn't have six different specialists.

I pretend that I don't have a 3 ring binder full of medical info and notes on him.

I pretend that he hasn't been hospitalized twice in his short life and that he hasn't had more doctors' appointments and medical tests than I can count.

I pretend that having a child with a genetic syndrome, special needs, or medical issues is something that "only happens to other people."

I pretend that my kitchen counter and one of my cupboards aren't full of syringes, tubes, and medication.

I pretend that I can let a number I don't recognize go unanswered because there's no chance that it's another call from a doctor, medical supply company, or insurance company.

I pretend that I'm not anxiously waiting for the results of the genetic testing.

I pretend that I'm not worried that they won't find a diagnosis from the genetic testing because that would mean that he's one of those "undiagnosed" kids with unexplained problems.


But, I never have to pretend that my son is perfect just the way he is because there's no doubt in my mind that he is.  I never have to pretend that he's surrounded by so much love that he'll never know a moment without it, because he is.  I never have to pretend that he has a network of family and friends who love and pray for him because he does.

"Cause all of me loves all of you.  

Love your curves and all your edges

All your perfect imperfections

Give your all to me

I'll give my all to you

You're my end and my beginning

Even when I lose, I'm winning"  

~~John Legend~~