Life is Different

For the first time since Liam went to heaven, I went to read a book. 

That says a lot about me. I opened my kindle app to read more in a book a started reading weeks ago but I just stared at the words. My heart felt heavy and I felt guilt. I always read because I enjoy it. I also read to de-stress and to escape the worries of every day life. However this isn't something I can just get over. This tops the list of life altering situations of epic proportions. 

I don't what else to say. "Life is different" does t even begin I cover it. 

I've had moments when I could go into his room and pack up medical supplies or put some special stuff into his keepsake trunk. But mostly I just wish I could build a wall up between our room and his and have I forever stay. 

I still have phone calls to make and stuff to get rid of or pack up and I'm finding it harder the longer I wait. I just want to hide from the truth. I want to hide from the fact that my baby boy is gone forever. That I won't see him again or hold him again until I get to heaven. 

I don't sleep. I pass out for a few hours every night. Sleep brings ptsd flash backs of what happened that day. I don't want to see that tragedy over and over again. I want to remember his smile, and him running through the house. I want to hear his voice as if he's right here. I want to remember all the cuddles and his sloppy wet kisses. I don't want to remember the blue lips, ears, fingers and toes. I don't want to remember the seizure. I don't want to remember the intubation or the cpr or the blood or the doctor with tears in his eyes as he finally gave up after Liam's heart stopped for the second and final time. 

I thought my tear ducts were broken and dried up but I was wrong. The emotions are so intense they're spilling over. 

I watched Lanie ride her scooter today, well yesterday since its past midnight. I kept remembering all the times he was right out there with her on his scooter. He loved being outside. After years of being locked inside he had enough and would spend all day every day outside and still cry when it was time to come in. He didn't care what the weather was like. He just knew he wanted to be outside. 

Picture Day and more

Friday was picture day at school. Or as my kids chanted excitedly "picture day picture day it's picture day yay" until I thought my ears would bleed or my head expload lol. They were so excited and it made for a fun morning dressing up, doing their hair and pretending to be a wild thing.

Yes pretending to be a wild thing because where would we be if Liam didn't sport his wild thing sweatshirt with hood up and walk around the house roaring at everyone. 

What a fun sweatshirt!!

Liam had so much fun that he refused to let me take the hood off so that I could do his hair. I had to take a brush to his school with me and fix his hair as they lined up to take pictures. 

He wouldn't even take it off to take a picture with sister. Neither seemed to mind since we're all used to the antics around here. Lanie wore a new outfit picked out just for pictures. She proudly sported her healed boots that I never let her wear. (See how she's trying to make it known in the picture lol)

The snags didn't end there though! I had forgotten to go by the bank to pull money out to pay for pictures so we had to leave early to do so. After getting to school I discovered that the picture envelopes were left at home and had to hunt down two more! Thankfully Mrs B, Lanie's teacher had extra!

Once the envelopes were filled out and stuffed with money, I sent Lanie off to class and returned to Liams since it was my scheduled volunteer day. It didn't take long before his classes lined up and left to take their pictures. 

After picture time the teachers lined them up on the tables on front of the class to take a big group picture. I was able to snap a few but can't post them due to safety reasons. 

I did snap this cute picture of Liam on the bench however. I really hope he smiled just like that for his picture because it's adorable!!

The class mascot was included in their group picture so of course we had to take a selfie with her. Her name is Franny and every morning she sings songs with the kids and they tell her good morning. Liam thought it was hilarious to cover my mouth up. 

Later Friday night I took the kids out to Bella's school carnival where they had a blast playing games. 

Lanie has a pretty good arm on her. She tried out the pitching booth and did great. 

We couldn't leave without a picture at the photo booth. 

We stopped off at the 4H booth to pet the bunnies. Liam kept telling us how soft the sweet bunny was. He had no interest in the baby goat though lol. Guess he had enough of goats at the fair!

We played King Kong ping pong many many.....MANY times. Liam loved watching the ball make its way down the board. 

Liam wouldn't let us leave without trying the water gun race game... Twice. He won the second time around. By this time Liam was true my exhausted but we still had tickets to use up. 

So we went back to he photo booth and took a picture with their cousin Steven. 

And this next will have you doing a double take if you know our little lamb. 

We had to at least try the cotton candy. Well truthfully I bought some cotton candy for myself and we sat on the grass to relax. Liam took one small taste then stole the whole thing from me!! He ate it!! And he loved it!!! We ended up going through 4 cotton candys throughout the night between the three of us. Liam ate at least 1 1/2 himself. 

This is HUGE!!! Finally little lamb is fighting through his oral aversion and trying new things and loving them!! 

Friday was exhausting. We didn't get home till almost 9pm. We didn't have much recouperating time before one of our favorite littles 7th birthday party. Little Jada (whom I like to call a sour patch kid) celebrated her birthday in style today with a frozen themed party that rocked it!! 

Her mom worked so hard to make it special and it was perfect. I am lucky I got to help a little with decorations and making frozen themed candy for the kids. 

I found the Wilton mold at Michaels and used the 40% off coupon then bought winco's melts. I went to a local cake shop for edible glue glitter dust for that extra wow factor. Pictured is the first batch which turned out with too much in some spots. The kids loved them though. 

Liam and Lanie enjoyed playing with their friends and seeing some they haven't in awhile. Liam are pretzels, chips, cake and had a blast hitting the piñata. 

After a long two days id say we could use some R&R. In all honestly it's been a long two weeks for me and I desperately need some R&R but it doesn't look like I'll get any anytime soon. 

I tend to end many of my post in a similar fashion but here it is...

This is what life is all about. Enjoying every moment and making it happy and fun. Not hospitals and pain and sickness. Thank you God for another great day with my babies. 

<3 <3 <3

You Don't Tell A Boy No

If you know me, Liam or what we've been through since he's been born then you know about his tubie Journey. 

You know that he's failure to thrive, meaning he doesn't grow like a healthy child. He doesn't eat enough my mouth to gain proper weight so he has a feeding tube. Gtube. 

If you've followed us you know that Not only does Liam not eat enough but he's very picky on what he will eat. This is caused by a severe oral aversion due to all that time being intubated and all the times he's vomited. No one wants to eat if they're just going to bring it back up. It's painful. 

So of you know all this, than you probably know that I don't deny Liam food. Just about anything he wants to eat, he's allowed. At any given moment. 

So it's probably no surprise that Liam's sitting here eating popcorn after dinner. Why? Because he wanted it. 

I do try to help him make healthy choices. I still sit him down for breakfast, lunch, and dinner with a plate of whatever we eat. He knows he must sit there even if he doesn't want to eat. For a few minutes anyway. We try to get him to at least try the foods even if it means eating off our plates. Whatever gets those calories into his mouth and down to his stomach. 

Once he knows he likes the food, he is willing to eat it off his own plate. I make a lot of the same things repeatedly because I know he will eat them. After all, the goal is to eventually get rid of the feeding tube. 

He loves meet in almost any form, including beef jerkey. He loves eggs, French fries, cereal, pop tarts, popcorn, chips, potatoes, bananas. I could keep going but I won't. 

After working and talking to many specialist and GI's, and everything failing, I had to find a way to make eating happen. I had to teach Liam how good foods can be. Nothing anyone did helped. Except what I've done. I'm not trying to brag, just simply stating a fact. 

I've worked very hard to get Liam where he is today with eating so I'm not ashamed to say I hardly ever tell him no when it comes to food. 

Even if it means popcorn for desert. 

Ignorance is Not Bliss

Today is somber. Today a fellow CDHer is being laid to rest. Many others fighting for life. CDH families are left heartbroken, devastated and lost. Those with survivors feel guilty because their baby survived when so many others didn't. Parents of survivors are being judged because their child isn't "normal". I read a heartbreaking post which in simple form stated "ignorance is not bliss". I got to thinking. No it's not. It's hurtful. You may say something, thinking your helping when in turn your actually hurting. It happens daily. We just don't realize it. Having a little girl turn her head so you can't see her feeding tube and saying "now we can't see that thing on your face, and your pretty like a real dancer is supposed to be" (part of the article I read) isn't helping. Instead your breaking a heart. It's happened with Liam on many occasions. The other day a lady looked at Liam when he coughed and said "oh she's sick too. It seems all these babies are sick right now". I was furious. I had had enough. I was tired of judge mental people and I let my temper get away from me. I looked at her with a smile that wasn't really a smile and said "no, HE has chronic lung disease" in a sweet voice. I couldn't help it. Her and her husbands face dropped. She couldn't filter her response fast enough. She apologized and it seemed "sincere" until her, her husband and the little boy with them high tailed it away from us as fast as they could. It was like they were afraid they'd catch it from them like you would the flu. I could only shake my head. They had treated us as if I had said Liam had Ebola or some other highly contagious disease. You see, because these people didn't understand, because they were "ignorant", they were hurtful. It happens all the time. So please, don't judge the mom with a coughing kid whose out in public. Or the one whose checking her kid for a fever. Or one with a feeding tube. Or a kid on oxygen. Or a kid without hair or scars everywhere. You don't know the situation. These kids just want to be treated like every other "normal" kid. They don't want attention brought to their differences. And the parents don't need any more stress than they are already under going because taking a kid out with medical problems is stressful enough. We do it because our kids beg. They want to do "normal" things and we don't have the heart to continually break their hearts. ❤️❤️❤️ #cdhawareness #chroniclungdisease #thinkbeforeyouspeakoract

Potty Dance

I never thought that at the age of 3 my son would still be in diapers. 

My daughter started potty training at the age of 1 1/2 and was fully potty trained by age 2. 

Obviously we couldn't start potty training Liam at the age of 1 1/2 because, for starters, he didn't walk until right before his 2nd birthday. He hasn't been able to communicate with us verbally until recently. We tried once before, this last spring, to potty train but Liam didn't understand it. 

Now it's clicked in his head what the potty is and what your supposed to do with it. 

Yesterday I happened to be in the bathroom using the potty (TMI) when Liam walked in. He asked me what I was doing so I told him. I saw this look in his eyes like something clicking together and so I asked him if he would like to use the potty. 

Liam got so excited. He clapped his hands and said "yay potty". And sure enough he used the potty! 

This was yesterday evening, right before his shower. After his shower I asked him if he'd like to use the potty again. And again he was excited. He had used the potty successfully twice before bedtime. 

Today I've kept asking him if he had to use the potty. He successfully used the potty 5 times before 1:30pm. One of those times he even went #2. (Again I know TMI)

Liam was rewarded with plenty of cheers and high fives. This last time he didn't want to stop playing but did without a fight and was rewarded with a sticker. Boy does he love his stickers. 

Today hasn't been accident free, and I didn't expect it to be. I also don't expect any of the days to follow to be accident free. In fact, he's still wearing diapers because he isn't going 100% in the toilet. In fact we've still had several full diapers. 

I feel like starting potty training and immediately changing him into undies would be too big of a change that he just can't handle or process right now. The last time I tried to potty train Liam I immediately put him in undies and that resulted in both of us being frustrated. Today hasn't been frustrating in the least. 

We've been celebrating his accomplishments in using the potty and I think that's going to be our key to success. Just letting him do it on his own time, but reminding him to go. I'm very proud of him and how well he's been doing so far. I don't expect this to be smooth sailing. What I do expect is many accidents and weeks of failing until he gets it down. My expectations aren't high, they're reasonable and reachable. 

Proud Of Our Tubie

          I sit here laughing because the gauze came off Liam's gtube and he came and showed me. "Mom mom" he said as he lifted his shirt and pointed to his button. "It's ok Liam your fine" I said. Then he goes and shows his dad "dad dad". "Liam put your shirt down no one wants to see that!" I told him playfully. You see Liam is very proud of his button. So proud he will randomly pull his shirt up and show anyone including strangers. Of course it doesn't effect us because we are used to it. But Liam does this for a reaction so we tend to play with him a little.

          We playfully crunch our noses and in the silliest voice we say "eeewww Liam no one wants to see that but that thing away" and we proceed to tickle him and we all have a good laugh. This is what I did tonight, only as I said this Lanie walked into the room and says "eeww" because she plays the game as well. Only this time Liam runs toward her with his button in plain view laughing every step. Lanie gives him one of her fake screams and then proceeds to 'run away'. Liam starts laughing harder and chases after her. They ran in circles around the living room laughing until they couldn't breathe. Now you have to realize that Liam is a boy who spends 90% of his time in just a diaper because its hot and that just how he likes it. He is very proud of his button and he also enjoys these games we play.

           None of us are grossed out by it in any way at all. In fact these games are what helped him be ok with it because we turned him showing it off into a joke. We take the feeding tube itself very seriously. We never tell him its gross. We only joke with him in a way he gets. The "eww nobody wants to see it" always comes with smiles, tickles and laughter. The feeding tube saved his life and is allowing him to have a more "normal" life.

          Without the feeding tube I don't know that he would have lived to see the age of three. How long could he go on TPN without being a shadow of yourself? That would have meant growing up in a hospital completely. With the feeding tube he gets to do what other kids his age do. He gets to play and run and experience all that any other kid his age gets too. Sure we have to wrap his stomach with an ace bandage at times so that his Gtube doesn't get pulled out but it's all worth it.

          Liam gets to start pre-school this month. He gets to play in sand, go swimming, swing and climb. He gets to laugh and run and grow. With the feeding tube he's finally thriving. He's finally doing well. Sure it was rocky there for awhile but now his feed is dialed in and he's growing. So thank you to the Ancient Egyptian's who started finding alternative ways to feed people who couldn't eat the traditional way.

The following are pictures from Liam's Feeding Tube Journey:

Throw Back Thursday 5/22

Throwback Thursday where we go back and visit memories. 

1 year ago yesterday:

Liam's first time trying a churro. He lived the cinnamon but not the bread. Presently he loves bread. 

2 years ago last Tuesday:

Liam was hospitalized at Children's and was on oxygen 100% of the time. 

Thank you TimeHop for taking us down memory lane! 

Take What You Need

Somedays we need a little extra something to get us going it keep us going. Today I need:

Strength: it was a long night last night and I need the strength to be positive today and get through the day without wanting to hide under the blankets in bed. 

Understanding: people, even family rarely understand everything. Even my husband doesn't understand how often I'm awake at night with our little lamb because he's able to sleep through all the noise. I need him to understand Liam and I had a long night and that both of us could be cranky today. I would also like him to understand the words I say as for what they really are and not what he thinks they are. 

Patience: to deal with all the trials and tribulations that I am sure today will being. 

Healing: for both me and Liam. Liam's gtube stoma is irritated and red causing him discomfort.y allergies and back are causing many issues and I just want them to go away. 

Peace: for me today peace has two meanings. 'Peace and quiet' as well as inner peace. With all the stresses I encounter everyday I rarely experience inner peace. My mind is never at a peaceful state and this is causing sleep issues. I would love for the first time in 3 years to be able to close my eyes and think of absolutely nothing. 

Freedom: I would love the freedom to do what I want for just one day. I would love for both Liam and I be able to not worry about a feeding schedule, meds, breathing treatments. Or just simply the freedom to run or spin in circles with my kids until we're so dizzy we fall and just stare up at the sky. 

So today we will spread our arms wide, stare up at the sky, and spin until we're so dizzy we fall laughing until our sides hurt. 

Hush Little Liam

Liam is having a bad night. He keeps waking up letting out cries. He's uncomfortable and in pain due to his feed. I walked to his bed and he's laying there holding his stomach. Today at the GI when I told her this she thinks it's because of all the antibiotics he's had in the last two months over "gtube" infections that when she saw the pics of she said they weren't infections just irritated. I didn't really agree with her considering the pedi said infection and even Children's said infection on a few. Anyhow she said usually within 3 days the antibiotic are pit of your system but that with Liam he could be having longer lasting affects. She said wait it out a few days more and see what happens. I told her I was giving Motrin and Tylenol to try and get him comfortable at night but even that wasn't helping and only stopping the feed helped. Anyway so here I am at 2:47 am sitting on Liam's bed rubbing his back as he cries put "mama...mommy" every few minutes knowing there's nothing left I can do but stop his feed. So I do and watch as every minute that passes he gets more comfortable and less whinny. I sit here and listen as he calls out "mommy" a few more times then curls into my side for cuddles. I rub his curly haired head and whisper "shh baby. It's ok momas here" and hold him close. 

I sit here and I wonder "how does he do it?"  How does he have to strength to go through what he's been through? How does he deal with the uncomfortableness and the pain and still smile and laugh? How does he have the energy? It seems he's awake and tossing and turning most nights yet during the day he's hyper and happy. I only wish that after these sleepless nights I had that kind of energy. I sit her staining at his now snoring face and love him even more for his strength knows no bounds. His love is everlasting and unconditional. He has a passion for life and a yearning for learning. This little boy has touch so many lives, changed so many lives by just being him. Hearing his story only magnifies the live complete strangers have for him. This little boy who will have left a huge footprint on this world and he's mine. I get the honor of holding him and loving him daily. 

And yes again I've gone off track but that's because my son is now peacefully asleep just 10 min after stopping his feed. I look down at his peaceful sleeping face and thank God he's mine. I look at him and think "he's perfect, scars and all. Just absolutely perfect". Because he is. He couldn't be the Liam we know and love today if he hadn't of gone trough the journey he's been through. I get to spoil him with foods and candy whenever he wants it just because of his slow weight gain. His wants are simple. Food and cars and he's a happy camper. Medical needs aside he's a simple boy who doesn't ever ask for much. He will choose a $1 hot wheel or matchbox car over a $40 toy any day. Give him a bag of durritos and a sippie cup of water and he's a happy boy. 

I'm going to stop rambling as it's 3:10 am now and end with a picture... Or two from today. 

{pic below of the nurse at the GI clinic taking Liam's vitals. Liam whose been through this millions of times is just sitting there patiently waiting and bored out of his head. She took longer than he was willing to give her to listen to his heard so he started laughing and playing with her stethoscope. }

{pic below is of Liam posing for a picture with Nemo. He heard he was getting the Nemo room today so he ran as fast as he found in his squeaky sandals to get there. All the nurses smiled at his cuteness and laughed over his silly shoes. Once in the room I told Liam to find Nemo and he searched until he found Nemo hiding behind a chair which he pushed at until he could squeeze behind it. I moved it so he could "play" with Nemo. I asked him where's Nemo? And he point to him then rambles on while staining at Nemo. Finally Liam declares "Nemo paint mommy". What a jaw dropping moment. Yes baby Nemo was painted on the wall. "Hmm paint" he said then laughed. We knew Liam was smart by how he figured out puzzles and problem solved but I never realized how much he actually caught on to things. I always thought he was in his own little world most the time but I was severely wrong. He may be slow at the talking game but this boys brain has been in the game learning and soaking it all in like a sponge.}

Check out our blogs Facebook page http://www.facebook.com/MommyConfessionalinmyshoes 

Follow Liam's day to day journey in his Facebook group http://www.facebook.com/groups/LiamMichaelBryant 

Ugh feeding tube failings

3/28/2014

Liam was crawling off the couch and guess what...

His feeding tube gets pulled out. 

I don't know if he's just extra hyper today because he's exhausted or what but he's been wallering the furniture, using me as a jungle gym and running around like an absolute crazy boy. 

So he slid of the couch, looks down and back up at me and says "uh oh. Mom out mom out" and points to his button sitting there on the floor. 

I grab our little tool and proceeded to put it back in. I've never taken pics of the process before and since I'm always being asked how it works I thought I'd share. Thanks to Daddy I was able to get pics. 

Be warned though, the pics aren't pretty. They're pretty gross. 

This one it was it looks like right after the button gets pulled out. I use a rag and ripe off all the fluid and blood. The reason it bled so much was because he stretched out the stoma when it came out. 

Next I insert the little tool and flatten out the buttons barb just enough to go back through the tube. That's it! It's ready to go. 

I did put triumcunilone cream on his stoma and a tubie pad. I also wrapped his belly with an ace bandage to keep it in. 

I am irritated that it came out because Liam was on a break from having his belly wrapped. The wrap hadn't been off but 45min. Figures though. 

Feeding Liam: Bolus

Liam's day time tube feeds are done bolus. That means he gets a bigger volume of formula at one time. Liam gets 3 bolus feeds daily of 4 oz in one sitting. Here how it's done:

I hold the button firmly with one hand then insert the extension by making sure the line on the extension is lined up with the notch in the button. 

Then I turn the extension locking it into place. 

Next I connect the 60ml syringe to the large port of the extension. The small port we use for his meds. 

I start his feed by pouring in the first 60mls (2oz) into the syringe. At this point the extension is still clamped so I can get an exact measurement. 

Then hold the syringe up, unclamps the extension and let gravity do it's job. When the formula gets to the bottom of the syringe, I clamp the extension and pour in the last 60mls of Liam's feed. 

I let his feed run all the way then just sit there letting him vent. This allows has to escape. I also do this because sometimes Liam will burp or retch and end up vomiting if not. This way it all goes through the tube and not his mouth and possibly lungs. Liam usually only needs to be vented for 2-3min or so. The while feed process takes us about 5 minutes. Liam has been fighting it lately. He wants to eat by mouth but doesn't want anything. Luckily yesterday and today things started going better. He didn't fight the feeds today and he ate. 

Good news is he's getting high cal stuff. All his favorites. Bad news is it's all empty calories. Well mostly anyway. He loves apple sauce, Doritos, French fries and random other things. He's been refusing actually meals. For lunch yesterday I did get him to eat some top roman noodles. It wasn't much but it was something. He has his moments. His GI said to give him whatever he wants to eat to get him eating regularly then we can start working on types of foods he needs to eat. OT said the same. Me? I decided nothing will ever be perfect and I need to stop trying to make everything perfect and just work on one thing at a time. Gotta keep his tube feeds going and him tolerating them. And I have to continue to offer him food in hopes he will eat them. Like with all thing partaining to Liam, some days are better than others. <3

Attached by the cord

Last night I did a post on how I set up Liam's night feeds. Tonight I want to do one that shows how I get Liam ready. 

He is literally attached to the cord, or in this care tube, all night long. When Liam had a GJtube I had to worry about it getting pulled out because that resulted in a immediate trip to children's ( 1 1/2hrs away) so they could put in a catheter to keep the hole open. He would end up with an IV and have to stay until they could get him in to surgery to replace a new GJtube. Then they would keep him until he tolerated full feeds and gained so many KG per day. This would usually be a week long process. 

To avoid this I started wrapping an ace bandage around Liam's belly to hold the tube in. Yes Liam does have a Gtube now that I can replace myself but we want to avoid stretching the hole. We also don't want it coming out in the middle of the night and leak all over as well as take a chance at his hole closing. Here's how Liam gets ready for bed:

This is the top part of Liam's stoma. It's actually looking really good compared to past. 

And the bottom of his stoma. He just stopped antibiotics for an infection of the stoma. It's a little irritated here because Liam pulled his tube out today accidentally. This is how we start, with a clean stoma. 

After cleaning Liam's stoma I use triumcinolone cream. This help with all that red tissue you saw above called granulation tissue. It's shrunk his in half in just a few days. Sometimes if the stoma looks really irritated and is sensitive ill use neosporin with pain releaver in it. It really does make a huge difference. 

Now tonight I had to use this stoma paste stuff instead of the normal stomahessive. We're still waiting on his refull to get here. This stoma paste seems to burn Liam and it smells bad. Putting the cream around Liam's stoma actually prevents this paste from burning and irritating. I had to figure that out on my own. You'd think they're be a warning on the tube but there wasn't one I could see. Still it's the only stoma anything we can get at our local walgreens or any local pharmacy. Liam's regulate stuff, stomahessive has to be filled by the walgreens at children's hospital (1 1/2 hrs away) and sent to us. They are a specialty pharmacy that deals with the special needs stuff like this and know how to work with CCS. I love the stomahessive because is a powder that when it gets wet turns into a glue like substance. Liam's tube leaks a lot on ots own I apply lots of the powder and it works like a charm. It also is easier to remove than that paste. 

Next comes the split gauze. I prefer 4x4s over 2x2s because they seem to soak up more when needed. I place the gauze between the button and belly. The paste or stomahessive bonds the gauze to his belly. What I didn't get a pic of was how I put in Liam's extension the. Take more gauze and place it under and around the extension but above the button. This braces the extension keeping it elevated and flat. If I don't do this the extension pulls on Liam's button causing the hike to stretch and causing Liam pain. 

Lastly I wrap his belly with an ace bandage. The one shown I had cut in half because it was so long, then sewed it so it was wider and fit his abdomen perfectly. I also used Velcro for a fast way to secure the bandage around his belly. Ace bandaged are pretty cheap these days. You can even find them at certain dollar stores. Velcro is only a few bucks and you don't need much. Your looking at maybe $3 spend to keep in his feeding tube. It's amazing how $3 saved us many many hospital stays and surges when Liam had a GJ.

When Liam was hooked to his pump during the day we couldn't keep him cooped up. Thankfully the ace bandage had given him the chance to realize his tube was being pulled out before it actually happened. He ended up stopping before the tube would come out. Liam's night regimen is pretty straightforward and simple as can be for a tube fed child. 

Feeding Liam: Night Feed

Feeding Liam through the night in the past has been a exhausting thanks to feeding tubes. Most kids get weined off formula at a year old and start sleeping through the night therefore their parents get to sleep all night long. 

That's not the case with Liam Michael. He's 2 years 8 months and 11days old and am allowed the luxury of sleeping all night. 

Liam for the most part sleeps all night unless he's sick or suffering from night terrors , constipation or pain. Liam was a year kid when I realized I had been lying to myself that while first year about how once he turned a year Id finally get some sleep. I can laugh about it now. I was in denial back then. It was a coping mechanism to get through that really tough first year. I find myself doing the same thing about his feeding tube coming out. Some days it seems like it'll come out within the year because he's eating so well. Then you have days like today and yesterday where he doesn't want to eat. 

Sorry got off track there. In these past years of tube feeding I have picked up tricks that help me with his tube feeds. I thought I'd share how I feed Liam at night. The weather here in California is hot and formula can go bad faster when it's hotter. This poses a problem for pump fed kiddos. Feeding formula that has turned to your kid can make them very sick, something we want to avoid. Theoretically you should be able to put 4 hours for of formula into the feeding bag and it'll run through before going bad. Still it worries me because I feel that the pump doesn't match up with my math. 

I've had Liam's pump malfunction and not flow at the rate I set it at or the rate defaults in the middle of the night and the rate changes in the past so I don't fully trust it. (I have gotten the pump serviced when I see this). To ease my witting mind I came up with this little trick:

As you see in the picture stating from top left to right then bottom:

I have Liam's formula made up ready to go for the night. Formula is only good for 24 hours so don't make more than you need or you'll have to throw it out. There have been days in so exhausted that I forget what time if had made the formula batch the previous day and had to pour it down the drain. To avoid this I don't make more than I'll need in a 12-18 hour period and I store it in this Rubbermaid liquid bottle in the fridge. In the picture you see 45oz of formula. I love this jar. I haven't found anything else that has worked as well for Liam's formula. 

I full up Liam's pump bag and with it hang an ice pack. This helps keep it cold and from spoiling. I put the ice bag in a large ziplock bag and punch a hole in an upper corner to hang it from the IV pole. 

When I order Liam's meds that have to be refrigerated they send it in this bubble wrap covered in foil type thing with ice packs shoved inside. This is what gave me the idea. It takes 3 days for the delivery for store to my house and the meds are still cold like I've just taken thenm out of the fridge. And this is in he middle of summer when our weather is in the 100's and it sits in a hot delivery truck. I figure if it works for that then it's perfect for a 10 hour feed. I cut it so it opens like a book, punch a hole in the upper middle. Then I hang it and wrap it around the feeding bag and ice pack. I used to tape it every night but it was taking way too much tape to keep that up. I've cut two slit in the middle of the ends and used a posey to keep it close. A posey is what they use in the hospital to keep the pulse ox probes on the kiddos. You can use regular Velcro or string or whatever. As long as it stays closed your fine. 

I've had a lot of problems with Liam's extensions during night feeds. The med port like to pop open and Liam like to disconnect his feed with his toes in his sleep. This makes a huge mess that I end up having to clean in the middle of the night as well as bathe him. It makes out bedroom smell horrible. To avoid this I use tape. I take paper medical tape we get and tape both the med port closed and tape the feeding bag end to the extension. That way monkey toes can't undo it. AND because Liam had started chewing on the feed ports little rubber cap I also tape that down to take away the choking factor.

It was really scary when I went to get him outta bed one morning and stepped on the little balled cap. My mind wouldn't stop imagining the worst case scenerio. It would be extremely ironic if the very thing that has kept him from starving to death all this time ended up harming him (can't myself to say the worst case scenerio out loud or typed but I'm sure you it). 

I've also stated taking steps in decorating his set to. I drew that minion with a feedingtube. We live minions in this house and I thought it would be super cute. Still trying to come up with ideas for the pole and pump itself. Look forward to the post with pics ;) 

The ice pack trick has really come in handy. Since I've done that I've actually ha a few nights where I've gotten 3 straight hours of sleep. I get up and refull his bag once and the rest of the time it's meds, diapers or soothing him after a night terror. Let me tell you after a little over 2 years of being up every hour on the hour, those 3 hours are a blessing. 

Tonight when I told Liam it was bedtime he said "oook" and grabbed more cars than he could carry (he kept dropping them and getting mad). It was late for him, 9:30pm because he had fallen asleep around 3:30-4p for a nap and didn't wake up till around 6pm. There was no way he would have let me out him in his crib at 8pm. I had to let him burn energy first. 

Here's our sweet boy in his crib with his cars. This boy loves cars and trains. Thankfully hot wheels are only .89-1.00 each he loves them and wants more every time were out in a store and he sees them. It also doesn't break the pocket book! Lol. 

FYI did you know that not getting enough sleep caused irreversible brain damage? It's true. I heard it on the John Tesh radio broadcast and on the news. Scientific test show that not getting enough sleep causes brain damage that is permanent and side effects include memory loss. Pretty scary for me since I never get good sleep. 

Liam's Tubie Journey

Liam Michael is no stranger to feeding tubes. In his 2 1/2 years he has had many different types of feeding tubes. His very first feeding tube was while he was in NICU.

August 2011

 It was a short journey and lasted only long enough for him to learn to eat by mouth via bottle.

August 2011

 He mastered that quickly and was tube free at discharge.

August 2011, Last night in NICU

Liam seemed to be doing very well at home.

Then one day Liam started eating less and less.

It became impossible to wake him up to feed him.

Keeping up with his strict feeding schedule just wasn't possible.

Liam stopped gaining weight.

He started loosing weight.

The specialist at UCSF decided it was time for a feeding tube.

The NG tube was Liam's first tube outside of NICU.

Last week of September 2011. Mommy made his heart.

What should have only been a few days stay at UCSF,

turned into 14 days.

We had to be taught how to insert the tube without doing damage.

The we had to wait for Liam to tollerate feeds

and gain weight.

Finally he was able to go home again.

But home didn't last long.

After only 2 days of being home we had to rush Liam to Children's Hospital Central CA.

He wasn't tolerating any feeds,

vomiting profusely,

and had trouble breathing.

It was a long wait to figure out what was going on.

At first they thought he has caught a virus.

Soon they realized it wasn't a virus.

Liam needed an Nissen Fundoplicaton and a Gtube.

This stay took 4 weeks.

Last week of October 2011

After the Gtube came many formula changes.

Then it was time for a GJtube.

No one could figure out what was going on.

We went through almost every formula on the market.

March 2012

Things didn't get easier after he got the GJtube.

We went through so many ups and down.

Randomly Liam would start vomiting.

The vomiting would cause pnuemonia resulting in a hospital stay.

This kept on for more than a year.

In July of 2012 Liam's GJtube had come out and we had to use a Gtube until they could get him into an OR.

He did very well.

So well we had canceled the surgery and planned to stick with the Gtube.

On the 5th day of having a Gtube,

Liam suddenly started vomiting.

No one knew why.

He ended up with pnuemonia and hospitalized again.

They put the GJtube back in.

After continued vomiting issues and tollerance issues,

they finally figured out what was going on.

May 2013 the surgical team at Children's figured out the mystery that had been stumping us all for almost 2 years.

The question always asked,

"Why is this happening?"

was finally answered.

It was a miracle!

And a HUGE shock to us all.

The balloon in the Mic-key tube's (G and GJ) was too big for his stomach.

It filled his stomach so he never felt hungry.

The balloon would also hit his pilorex randomly,

causing the vomiting.

We also learned that he has a Hiatal Hernia.

(Still un-touched to this day)

They tried an AMT mini balloon less Gtube.

Within 20 min Liam was hungry.

He started tasting foods.

It was amazing the change.

May 2013

Once he got  this new tube Liam seemed to just thrive and make HUGE strides.

At the end of June 2013 he started walking.

Running.

Growing.

Thriving.

Liam hasn't had a hospital stay since June 2013.

It's been 6 months now.

What is an NG tube?

What is a Gtube?

What does an AMT mini Balloon Less Gtube look like?

What is a GJtube?