G-tube: Hydration & Nutrition

Happy Little Guy

Food and Water.  Two things every human needs in order to survive.  As a parent providing for their child, keeping them well nourished and hydrated is the primary responsibility from the moment they are born. Most new mothers debate whether they should breastfeed or not and then some struggle with whichever decision they do end up wanting or having to do.  Yet, they know that in the end their child will be receiving the nutrients they need in order to grow and develop.  Most mothers and fathers are told that participating in the feeding of their newborn is key to form a strong and stable bond...along with many other debatable observations and antidotes written about or spoken of by doctors, therapists, or parents alike.   Whatever reason is behind a persons desire to be there to feed their child, simply put...they are getting hydrated and nourished. 

Have you ever had a single moment or memory of being near a child as they consumed some form of nourishment that you played a direct role in providing for them?  Either from your breast or bottle or even a homemade meal that you cooked specifically with them in mind?

Now...take away their mouth.  What would you do?  How would you feel?  All that preparation and time you spent?  All that effort!

Maybe I got a tad bit dramatic in the picture I wanted you to see but at least I left you with the same stumped and baffled feeling that so many in this world are faced with.  For a variety of reasons many children as well as adults cannot orally consume food or drink and therefore cannot eat in the typical way that most humans do.  Noah among them.

My husband, our families, as well as myself literally fought the feeding battle multiple times a day to try and keep Noah away from dehydration.  The weight of it all sat on our shoulders like a million rocks that kept piling on with every feed, day, and week that passed.  Topic of conversation between my sister-in-law (Noahs daycare provider) and myself would always be about the spoonfuls or ounces that went into him, if they stayed in him, and how many fully wet diapers were being produced.  There was even a point where we kept logs but then the logs became a pile of rocks of their own and in order to survive we had to brush off the rocks we no longer had shoulder space to store. 

Noah was always borderline and never once looked like he was in danger of being malnourished or dehydrated.  His low tone always kept him looking like a happy chunky baby.  His pediatrician nor any other doctor ever had a concern about his nourishment either.  His BMI was a tad low but never too concerning to call him failure to thrive.  He continued to grow and was very long for his age.  But we knew as his parents that something just wasn't right.  Yes he looked healthy but he was always slightly lethargic.  We blamed the seizure medication or teething or a flu bug.  We blamed the weather or the strain of therapy.  We blamed his near blind vision and his delays.  Occasionally he would have a "day" where he would have all this energy and do something that would blow us away...and then it was gone.  We knew he had this energy storage somewhere.  We knew that the state we always saw him in was not the state he should be living.  He had more in him that was desperate to come out but we didn't know how to tap into it.

Around the age of 12 months Noah was consuming on average 8-12 ounces of baby food a day along with about 21-30 ounces of formula.  Not a ton compared to normal standards but enough to keep him growing and staying our little chunkamonk.  It was a fight to get this much in him and more nights than not I laid awake counting calories over and over to make sure I met our daily goal...which I never did but was always super close.

A few months ago we started what I like to call our "three months in oblivion". Completing another round of intensive therapy at Now I Can but missing many of the days due to sickness.  In and out of the hospital 8 times in two months with simple surgeries and common colds.  Therapy, getting your adenoids taken out, teething and the sniffles should not put a child in the hospital...but with our Noah it did.  We couldn't keep him hydrated.  He was never what the ER docs like to call severely dehydrated but enough to need three trips to the ER for emergency IV fluids.  Severe=debatable.

A sip here and there just wasn't cutting it.  Intermittent spoonfuls of baby food while praying he would "sleep drink" as he normally did was not winning us the war.  We kept hoping that getting his adenoids out or upper frenulum clipped would help his mouth start to work like the docs told us it might...but it didn't.

After the third trip to the ER for fluids we were forced to put a nose feeding tube in him just to have a way to keep him hydrated while he healed from the surgery.  Well, the nose tube made feeding him worse and we eventually were scheduled to get a stomach feeding tube put in (g-tube) just 10 days later.  I felt defeated, like my 19 months in fighting this war was over and I stood on the losing side with my flag dragging behind me like a toddlers woobie.  I cried, I maybe had an extra glass of wine a few too many times, and then I just gave in.  Nothing else I could do.  You cant win a war without the tools to do it.  We needed new tools and a gtube was the next option for us...the only option really.

So, here is my honest opinion about the gtube.  I have an unhealthy relationship with the whole thing.  One day I am in love with it because I know for certain Noah is hydrated and nourished and thriving in his development, but the next day I want to break up with it and throw it out the door and run screaming into my pillow how much I hate it.  Then I sit up, pull myself together, and recited all the good things it is doing for not only Noah but my marriage, our family, and our extended families lives. 

Sound Sleeper these days

We have freedom now.  Instead of all those weighted rocks on our shoulder we now only have a three pound backpack to carry around, and only when he is hooked up to his feeding pump.  The second the gtube got surgically put into his stomach it was like a bulldozer came and scrapped every single rock away from us.  We have yet to waste a single moment or wink of sleep worrying about if Noah got enough to eat, if he stayed hydrated while at the pool, or if his medication actually reached his stomach.  We can do things now.  Like go to the lake or shopping for more than a couple hours.  We can go on long car rides up the canyon now and finish projects.  We  both are able to get a really good nights sleep because the pump is providing him with water and calories and doing all the heavy lifting while we slip into slumberland. The pump is like his Nanny who takes care of his tummy while he gets the rest he needs as do we. We no longer have to force Noah multiple times a day while he is awake to eat, chew, and consume food and liquid his little mouth can't handle right now.  We are no longer the alarm clock that wakes him from every single nap as we try to sneak in a bottle to have his natural sucking reflex take in a few ounces.  We are once again the good people instead of the ones who cause him discomfort and pain and make him throw up or force his throat to work in a way it can't yet.

Noah has THRIVED since the gtube.  As much as I hate that we can't sit down and eat some fish crackers together I love the fact that Noah is starting to enjoy food again but at a much much much slower pace.  We still work with him daily trying to feed him orally but it is a really slow process and we are taking this first few months and intentionally going slow with it.  Normally I jump in head first but all that energy was sucked out of us all and as much as Noah needed the break from feeding torture, we also needed the break to find our sanity again.  We hated feeding time as much as Noah did but afterwards we were the ones who had to carry around the worry and guilt every single day and night.

Liking Food Again!!!

It has only been 7 weeks since Noah got his gtube.  In that time he has put on three full pounds and is even more chunky than he already was.  He is starting to try and sit on his own now.  He is grasping things with an urgency I have never seen before.  He is starting to track across midline back and forth and really trying to attend to objects now.  He is laughing nonstop and babbling more than we have ever heard.  He is tolerating things so much better and longer.  Feeding therapy is just that now...therapy and not a fight so he actually enjoys it once again.  He is sleeping better and napping longer.  He is starting to like certain toys better than others and we found he really loves and adores fuzzy blankets rubbed on his cheek.  He has this energy that wont stop now and is starting to try and stand while in his door frame jumper.  He hasn't been sick once in 7 weeks which is like a new record.  He has even broke two new teeth and hasn't thrown a massive fit about it.  We are no longer in oblivion anymore.  We actually have a truly happy and healthy family and are starting to find ourselves again.  We are calmer and more relaxed, rested and humorous again.  As much as I can say I hate the gtube I can't because the gtube gave us our livelihood back.

Yes, it was a major and massive learning curve that took time and research to fully accept.  In three weeks we had it down to a science and even started what the "Tubie" world calls the "Blended Diet".  Noah is once again getting real food in his tummy which has helped dramatically with his reflux, gag reflex, and overall composure.  

Look at Noah try to sit on his own and use his arms

My advice to all you who are struggling with this decision and are currently in your own feeding war.  Take the time to fully research it, talk with your doctors about it, watch youtube videos on how to take care and maintain a gtube, and get comfortable with the idea before you totally disregard it.  All those moments where you tell yourself "If only I had known..."  This is one for us.  We are not kicking ourselves for fighting our war because it allowed us the sanity to know we did all that we could.  However, seeing what Noah has accomplished since getting fully nourished and hydrated is beyond our wildest imagination.   Its a very tough decision to make but at this point in our family we made the right choice.  He may always need it, he may surprise us and get it out in a few short years.  At least we know that our baby boy is getting all the essential vitamins, minerals, fluid, and substance his body needs to perform at his best and wow us with his next move. 

Noah was featured in an article

The MAGIC foundation asked me to write an article about Noah for their summer newsletter.  You have to subscribe to be able to read the entire newsletter (all proceeds benefit the foundation and their wonderful cause).  However, here is Noah's specific portion for all of my friends and family to enjoy  :)

***(warning: no matter how many times I proof read the article before I sent it in, I did find a few grammar errors in the final article.  Hate when that happens!)

hoS(PIT)heLl

Dear whomever runs all things medical in this universe,

Enough is enough!  Yep...I said it....we are done!  I would like to go into details about all the hospital chairs we have sat in and all the aquatic cartoon animal wall murals we have stared at with either exhausted, teary, or blank eyes but honestly...I lost count.  I guess I could flip through the three inch stack of medical history forms from these past two months but just the fact that I actually have this stack makes me want to "Lash Out Irrationally"~Tim Allen's The Santa Claus

Noah just can't catch a break (as I knock on wood praying he actually doesn't break something now).  Seriously though, it started with his inability to stay hydrated/nourished which sent us on a few trips to the ER for fluids.  Then he got a cold/flu bug.  Then he broke three molars at once which again caused total refusal to eat/drink and back to the ER we were sent directly from his peds office. Then his adenoid/frenulumectomy surgery and then another ER visit for fluids and then an Ng-tube placement and then a G-tube surgery and now of all things a bowel obstruction, yeast infection around his stoma site, and some type of other infection they couldn't find in all FIVE trips down to radiology and ultrasound departments. 

After every visit the nurses always hand us his plastic name tag that sits inside a blue plastic wrist strap.  "Would you like to keep this for his scrapbook?"  they always ask.  "Um, no thank you" is always our reply as we hastily toss it directly into the trash container.  When he was born we kept this little tag as a cute reminder of our quick trip in the hospital to welcome him into this world.  Now the only thing these name tags remind us of are pain and suffering our son is enduring and how its kind of like he has a credit card directly attached to his ankle.  Each time they administer any form of medication or procedure they have to scan the bar code on his tag to "charge" his file to make sure we pay for every little cotton ball and syringe full of Tylenol.  It honestly does get a bit annoying.

I figured out this time though when Noah kept kicking his tag off that they could actually keep this hard sharp edged ankle torture device off my son and instead put a sticker on his thigh and cover it with a piece of bandage tape (Tegaderm).  SOOOO much better let me tell ya.  We of course still have to keep the plastic one close by so they didn't miss each and every opportunity of scanning its bar code but at least Noah was a bit more comfortable keeping it off of him.

The first overnighter I had packed two bags full of extra clothes, toys, comfort items (for both Noah and myself), light snacks, and 'survival pieces' I have learned to never go without when sleeping in a hospital.  When I got home after that first visit I removed all the perishables but never actually had a chance to unpack all the items because we were soon heading back to the hospital for yet another all night stay.  For TWO months now I have not been able to unpack these bags.  I started to wonder if maybe that was the reason we keep getting sent back.  As if a cruel joke was being played on us and we were setting ourselves up for the inevitable.  This last Saturday evening and literally the second my husband and I stepped foot back into our home after our latest hospital stay I blurted out in one sentence "illgowashNoahand gethimreadyforbedyouworkongettingeverylastitemoutofthosebagsbeforeyoudoanythingelse."  Lets hope this does the trick and we will not be seeing anymore hospital walls for the rest of the year...or even better....our lives :) A girl can dream :)

We have learned a great deal about hospital stays that I would like to share for those who ever find themselves having to stay multiple days in the hospital.

1. Buddy up to each and every single nurse/staff member and be EXTRA nice.  You can call it brown nosing but I like to think of it as insurance that you and your child will get treated as somewhat VIP's.
2. FOR YOU: Pack a hoodie, eye mask, ONE earplug, your own pillow (an extra one you dont care about washing all the time), slip on shoes, socks, comfortable pants, an extra comfortable shirt, electrical device chargers, toothbrush, face wipes, chapstick, lotion, and light snacks.  For you woman...don't forget to throw in some spare "monthly" items as well cause more than once the stress of it all has put me in an unlucky situation.  It would be wise to pack some pain meds and stomach meds for you as well if you suffer from a weak stomach or tend to get headaches from constant beeping sounds, overhead lighting, or lack of sleep (cause you won't be getting much). 
3.FOR YOUR CHILD: favorite toys and blankets that can be washed, favorite movie or music, favorite binkie or chew toy (many of them) two comfortable outfits that can be easily put on and off. Pack some food just in case and if they are tube fed pack all the emergency kit stuff as well as the special type of formula they are on (cause chances are the hospital will not carry it).  Dont waste your time packing diapers or wipes unless your child is sensitive to other wipes then make sure to pack like two whole packages of them with you cause you will go through these for everything.  You will not be allowed to use your own medication so save time and do not pack these.  However, it is wise to type up a list of medications they are on and have that with you at all times including doses and intervals.  Include all the vitamins and otc medications as well. 
4.Hospital food is not good on the stomach no matter how "good" others might say a particular hospital cafeteria might be.  The stress, lack of sleep, and greese/carb overload that is in every single item will eventually catch up to you.  If someone calls and asks if they can bring you anything always say "Yes, if you don't mind I would love some food."  Choose healthy options even if you dont normally eat all that healthy.  I promise it will make the stay much more comfortable.  Also, drink tons of water (which the staff will always be able to get you). 
5. Just because you are staying in a hospital does not mean that you can turn your "parenting skills" off.  Nurses are assigned to your child but it will be up to you to make sure your child is comfortable, not stuck alone, entertained, clean and dry, and safe.  Depending on the cause for the stay the nursing staff will normally come in every few hours to check vitals or administer medication but otherwise it will be up to you to track them down for everything else.
6. If you need something always ask and do not be afraid to ask.  Warm heated blankets for yourself or child, extra pillows, water, some places even provide juice, soda, slushies, ice cream, babyfood, crackers, cookies, and granola bars.  Always ask.
7. White Noise is my saving grace.  Of all the hospitals I have stayed at with Noah each and every one of them has a tv set up in the room.  There is normally a "white noise" channel that has a black screen but a constant rhythmic tone flowing through it.  At first it might sound a bit annoying but for an all night stay this sound will drown out other patients, night staff chatter, hallway vacuums,  pump machine hums, and outside noise (if you are lucky enough to get a room with a window).  I don't think I could ever sleep if it weren't for this white noise channel.
8. You can turn off lights at any time.  If a light is bothering you or your child turn it off.  Don't be afraid to.  If the staff needs a light they will turn it on when they have to.  This also means the computer screen that is in the room. If the light on the computer is bothering you just push the button to turn it off.  I promise the staff will not mind (or at least they never have once i finally go the guts to shut everything off).
9.  If you are in a room with a window but no curtain ask for one or ask for them to pin up a blanket to block out the street light.  If your room has a track around the door but no privacy curtain hung up then ask them to call maintenance to put one up.  The track is there for a reason and you should be able to get one with no problem.
10. Shift Changes:  This is the hardest part of staying in a hospital in my opinion.  Most staff works 12 hours shifts that I have come across.  Nurses usually work from 7 to 7 and the tech staff usually works from 6-6 (just examples).  If you get administered at the beginning of the shift you can feel like they become your friends by the end of it...and then they vanish!  Just like that.  On the rare occasion you will get a goodbye but most of the time you will just get a new "hello" from the new shift and feel like you have to start the whole process over. It really does feel this way.  Start a new "relationship."  Make sure they know your child's specific needs and routine. ALWAYS ask a ton of question with each staff change so that you both are on the same page.  You can have an amazing nurse and then get switched to a new nurse that got in a fight with their spouse the night before and comes in all groggy and edgy.  Nurses are people too and just like you or I they have their good and bad days too.  If you are planning on getting discharged and it is coming to the end of the shift then plan on staying for at least another few hours because you will more than likely be parked until the new staff gets up to date on your plan of action and they finish their initial rounds.  I have found that when you are woken up at 6-7am with the new shift change a doctor usually comes by and I always ask them if/when we will be discharged and then with each and every staff member that comes in after that I remind them of this time to keep them on track so that we dont end up getting discharged at midnight again (this has happened). 

***bonus:  If your child had any lab draws the nursing staff should be able to pull these up if you have not been able to speak to a doctor in over 24 hours.  If you need to speak to a doctor then just ask...but be prepared cause you will receive a bill in the mail for every single doctor who steps food through your door (even if only to introduce themselves because they are covering another doctor while they went to lunch). Yep...we got a bill once for a $200 "hello".  Nothing you can do about it either.

Needless to say we are thoroughly finished and exhausted with hospital stays and visits.  If you are a praying person then please pray that our Noah will have a better rest of the year and that the only bag he will be packing is one to go on a much needed vacation :)

Ankle torture device...heading in for adenoid surgery.  Had we known it would lead us to another month of hell we would have cancelled it for sure.

After his G tube got surgically placed...obviously he was not a fan and wanted to express his discomfort. 

Sometimes you have those moments when cuddly friends make everything better. 

Adenoidectomy+Frenectomy = (G-tube minus Ng-Tube)

Adorable as ever noogie and all

 On 4/30/13 Noah went into his first surgery.  Surprisingly this was his first actual surgery even though he has been in hospitals and doctor offices every single month since he was born.   Before this surgery Noah had been sedated twice in the past for his two prior MRIs.  This time however he was actually given anesthesia.  I was unsure how he would react to this and the surgery.  I had anxiety for weeks leading up this surgery and exactly one week later I am still full of anxiety and fear. 
 

A few months ago I had gone ahead and scheduled an appointment on my own with an ENT (Ear Nose Throat doc) for Noah.  Nobody including his special needs pediatrician had ever mentioned Noah be seen by such a doctor.  I however knew he needed to.  Since birth he snored and snorted and always sounded like he had shallow breathing even though every oxygen monitor he had ever been hooked up to (12+) had always shown really good levels (thankfully).  As I have mentioned endlessly Noah to date still in unable to drink liquids while he is awake and I have always felt like there was/is an underlying reason to think about in addition to his oral aversions and sensory issues.  He always accepted liquid in his mouth using many forms of cups ect however he just could never actually swallow it without acting like he was drowning or in pain.  

One day I caught a bit of a cold myself and my nose was completely stuffed and I was trying to drink my morning coffee when I realized that it was incredibly hard to swallow and breathe at the same time.  It dawned on me that this might be what Noah is also feeling. 

The ENT gave Noah an exam and didn’t see much but Noah started to snort and so he sent us for a throat x-ray.  The x-ray showed that Noah’s larynx and his adenoids were vibrating off each other because of his low tone in his neck and throat.  All this vibration caused his adenoids to swell very large and were blocking his airway.  His tonsils looked normal and of good size so the ENT decided it best to remove Noah’s adenoids only at this time to open up his airways and hopefully in time he would be able to drink feeling safe someday.  

Then, during his most recent session at Now I Can, one of the amazing therapists was watching me give Noah a bottle while he was asleep.  She was very intrigued and noticed that all of the muscles that would be needed to get one to swallow were working normally.  Then the next day I tried to give him a bottle while he was awake and she noticed that he was unable to wrap his upper lip around the bottle nipple. 

In all the exams from every single doctor and therapist Noah has seen not a single one of them noticed that Noah had a very prominent upper lip tie.  I remember once when he was first getting his upper two teeth I noticed how large and tight this frenulum seemed and showed it to his general pediatrician who said it was normal.  When I was 11 years old and going through the braces stage I too had to have my upper frenulum clipped so that my upper teeth would be able to move together and reduce the pencil width gap I then sported. I put in a call to the ENT and asked if it would be possible to clip this upper lip tie at the same time he was already under anesthesia for his adenoidectomy.  He agreed and an extra ten minutes was added onto his surgery time.  

Ninja jammies!!!

The morning of his surgery we were to arrive at 6am for check in.  This was a very early start as I had to wake up around 4:30 to be able to get us both ready and to the hospital in time.  I was the first to arrive and check in but within literally 15 minutes the entire room was full of families and small children still in their jammies not knowing they were all going to be knocked out and have something removed in a couple hours.  I felt bad for every child that hour.  

After Noah got weighed and dressed in this adorable little hospital jammies, which made him look like a karate kid, we were then escorted to the surgery waiting room.  I was alone at this point as my husband had to work and I had told my parents to come up once he was taken back for surgery.  Thankfully, my sister-n-laws (Noah’s care taker during the day) neighbor works at this hospital and had come in especially for Noah.  This made me feel so special and helped tremendously with my anxiety and fear.  She walked me though all that was going to happen and took him back for the surgery herself.  While waiting in the surgery waiting room with my parents she not only called me once but twice within the 35 minutes surgery to give me updates.  I felt like a VIP and was very thankful for her guidance and help.  The surgery really did only take 35 minutes and that was from knock out time to post op.  I was then called back to see my poor baby in this dazed and screaming post op state from the surgery and anesthesia.  I felt so bad and then I saw the blood stains on the sheets and felt even worse for my little man.  I could tell his was in so much pain and so confused.  

Our “hospital angel” then led us to the 23 hour overnight observation area where we had to stay because they wanted to keep an extra special eye on Noah since he has neurological issues.  This was a total blessing in disguise because there is no way I could have handled Noah at home that first night without an entire team of nurses and aides there to help us.  His lip looked like he had just received a collagen injection from the frenulum removal and his entire face was just puffy.

Noah did NOT have a very good recovery.  He was so uncomfortable and out of it that he just screamed and screamed and screamed.  I felt bad for the other kids recovering and having to wake up to blood curdling screams.  Thankfully our Angel as well as my parents were there to help me “try” to calm him down.  They kept him hooked to an IV in his foot and were able to give him some stronger pain meds that finally helped calm him down and fall asleep.  

The funny part of this entire adventure/horror story is that Noah has always hated being on his stomach.  Tummy time in our house started in infancy as torture time and then later on turned into “I’m just going to lay here in protest and not do anything other than sleep or cry or chew my thumb.”  However, literally the second out of surgery he was flipping wildly from back to stomach and since then this seems to be his preferred position.  All this tummy time has really encouraged him to put weight on his arms and the one good thing that has happened through all of this is that Noah is now able to sit in his floor bouncer without the huggabebe pillow and can actually balance himself. 

The first night was rough…really rough.  Up every 20 minutes and almost a total refusal to eat or drink which is to be expected.  It literally took me 23 hours to get in enough food and fluid to allow us to leave the hospital and go home instead of staying another night.  In retrospect, I kind of wish we did spend one additional night there.  As soon as I got Noah home, and after two bags of IV fluids and three doses of loratab, Noah was happy and cooing and hungry.  He ate an almost 300 calorie meal which never ever happens. Then out of pure exhaustion both he and I took a long nap on my bed where I slept too long and didn’t wake up before he did to feed him his “sleep bottle”.  As soon as he woke up everything started to go downhill.  He was thirsty but awake and couldn’t drink anything.  He was hungry but overly hungry and wouldn’t eat anything.  He started to cry and scream and so his throat started to get sore and raspy.  He kept banging his face into the floor or mattress and kept hitting his upper lip which would cause more pain.  Every time we tried to sit him up or lay him on his back he would cry harder like we were poking him with needles or something.  This lasted for two entire days and nights and both my husband and I were just spent.  

I had taken the day of the surgery as well as the following day off work to be with Noah and my husband took the next day off work to be with him.  We took turns trying to allow each other to rest when we could but still….we were plain exhausted.  On Friday, the next day, we took Noah to his care givers house but that was not a very good day either.  His food intake was going up but his liquid intake was dwindling further and further.  

Feeding Noah while he sleeps is impossible unless he is sound asleep on his back so that we can position and feed him correctly so that he does not aspirate.  Since he refuses to sleep on his back since surgery we have had to try and turn him over covertly and pray he doesn’t wake up.  Prayers were not answered and he has woke up more times than not which means no bottle…less fluid…and approaching a dehydrated state again.  

heading out with battle wounds and arm braces

Fast forward a few days: Totally dehydration now:  Made a call into his doctor who rushed us to the Rapid Treatment Unit at Primary Children’s Hospital for what we like to call “The Noogie” insertion.  When Noah was just 3 months old he got his first nose feeding tube aka Ng-tube aka Noogie.  We hated it so badly that we spend every moment weaning him off the stupid thing.  We have spent literally 13 months trying to keep the stupid noogie away.  Like a bad nightmare it was now back in our lives to taunt and torture our whole family.  We had to endure another overnight stay and I got to watch Noah puke and puke and puke because the first day of having a noogie is like gagging on a funny straw that has been shoved down your throat.  It was another night of no sleep and watching Noah try to adapt to another oral issue.  Keeping in mind he was only one week post op from his last surgery.  Poor dude.  

We have now had the Noogie in our home for exactly 8 days.  We have found it to be a love hate relationship.  We hate knowing that Noah hates it.  We hate that it has made him not eat a single thing by mouth since it was put in.  We hate that it gets caught on everything.  We hate having to keep Noahs arm in a brace to prevent him for yanking it out (which he tries constantly).  We have the process of it all and the care and management of the adhesives and syringes.  However, this is probably the first week since we weaned off his last noogie where Noah has been well hydrated and we have seen an increase in energy in him that we just love.  We no longer have to struggle to feed him bottles when he is asleep and can actually let him, as well as us, sleep uninterrupted.  We have been able to get all medication in him which is nice.  Plus, eat time we do try to feed him orally it is more for practice and not an anxiety stricken task to force calories into our son.  Like I said love/hate.  

AMT mini-One

Monday morning we have yet another 1-2 day stay scheduled in the hospital when Noah will be getting a permanent G-tube placed into his stomach.  We have chosen to go with an AMT mini-one button with a 14 french size tube.  We will be using both continuous feeds through a pump as well as bolus feeds through a syringe using gravity to flow the formula into him.  Currently we are using Bright Beginnings soy drink that is 240 calories a can since he has a milk intolerance.  However, this is all on our wish list and things might change mid surgery as they commonly do.  G-tube feeding will be new to us and we do have our hesitations, fears, but also positive outlooks as well.  It is the best option for Noah at this time and though we have fought this since he was an infant I regret not doing it sooner.  I have joined all the tube feeding networking sites and educated myself to the nth degree about g-tubes and maintenance.  

Monday starts yet another chapter to Noah’s story and another hospital stay and medical history line to his already too long list.  Praying that for the rest of this summer (and year) we will be able to stay out of the hospital, away from IV fluids, and miles from the ER.  I feel prepared and ready and I have a really good feeling about this surgery and what will come out of it.  I am not going in with irrational expectations like I did with his first Ng tube.  I will take it a day at a time and work hard to get Noah to eat orally as well as start to drink orally while awake.  Already with the noogie I feel a weight lifted off my shoulders knowing he is fed, hydrated, and is getting his meds.  The g tube which I might have to now call his “goobie” will allow Noah to have his throat and cheek back and once healed will be a discrete reminder to us that Noah is healthy.

Here is a link to an instruction Handbook about G-tube options and care that was given to us at our G-tube assessment appointment.

First Stranger Comment: follow up to my last post

Who knew it would happen so fast, but it did, and I finally found out what I am made of (sugar or spice).  Sugar won :)


Day:               Mother's Day 2013
Time:             11:00am
Location:       Overly crowded and disgusting buffet full of coughing and hacking people with dirty hands clawing onto every single scrap of food like the world was coming to an end. 
Husband:        Biting at the bit to get the heck out of there (cringing at the kid next to us and I think I may have even seen him wipe his brow a few times from the chaos of the place)
Me:                 Using my mommy forces to tunnel out everyone and everything around me and focus on Noah eating bite after bite of sweet peas from a Gerber carton while my birth mom sat eating and enjoying herself as if she were a maiden in paradise (the things you will do to make your mom happy on Mothers Day)-*daughter points
STRANGER: older white haired woman in a pink moomoo dress with garlic breath and chipped fingernails.

Back Story: (posts yet to come): Noah got a Ng tube (nose feeding tube) two days prior which was causing all of us some anxiety, discomfort, and red eyes.

Scene: Hubby, Myself, my birth mom, and Noah in his stroller sitting at a small brown table that butted up against the packed dessert buffet stand (I can never look at another chocolate fountain again without gagging after seeing what people will do to one when they think nobody is watching).  I was crouched down feeding Noah his food hoping that nobody would notice me not eating the buffet food myself.  It was as if each spoonful of green glop was a boxing glove to knock away the minutes until I could breathe fresh air and get out of the place. 

About five spoonfuls in I feel some hands come and hold onto my shoulders.  ALERT ALERT:  Hubby is sitting across the table, birth mom is digging a gross shrimp vein out with her fork, and Noahs hands were trying to pull his tube out of his nose......who is touching me!?!

I slowly turn to see this stranger wide eyed, grinning, and breathing her garlic breathe on me.

Me: "Hello?!?"

Her: (in one sentence) "OhdearHappyMother'sDaywhatswrongwithyourson."

Me: (*flashing back to my prior post and thinking "this is it!) "Oh, um, uh, Thank You, um, uh, well....he had surgery a week ago and wasn't drinking enough water so they are helping him stay hydrated with a feeding tube they have put down his nose into his stomach." 

Her: (*still grabbing onto my shoulders as if pinning me to the already sticky chair) "Well, he looks healthy????"

Me: "He is getting there" (*fake grin, head tilt to hopefully shrug her hands off me, questionable look back at her)

Her:  mumble mumble.......then she walked away

Not a horrible experience at all.  Taken by surprise yes, but not the conversation I had envisioned myself being able to stamp a "Mean People Suck!" sticker onto.  I took the high road and kept my calm.  I smiled.  I came to a quick and simple explanation where I didn't have to dive into complicated details about my son.  I didn't get snotty. More importantly, I didn't feel hurt or saddened afterwards like I thought I might have. 

Afterwards I turned to my husband who nodded at me to silently say "Good job Honey!"  It was like giving myself a mothers day gift finally knowing how I would respond/react to a strangers comment about my son.  I was happy with the results :)

The "Noogie" is back...but not for too long we hope

A Baby No More

...a post heading that sounds more like the title to a Lifetime channel Movie than a pivotal moment that I have been dreading...but it did happen...and I found myself casually walking into our half bath next to our kitchen to drop a few tears onto a thin Kleenex tissue as the moment overtook me.

Like most parents you never want to reach that point when your baby is no longer a baby.  In my situation I never wanted to reach the point when my baby no longer looked like a baby but still acted like a cute fragile five month old. 

I am not complaining about the five month old part because I am one of the few fortunate parents that still gets to snuggle endlessly with their Johnson and Johnson smelling bundle of joy.  I still get to keep our crib at the highest setting and save my back from the uncomfortable bending over.  I still get to leave small objects lying around our home and don't have to vacuum every single day.  I can still go out and about without having to worry about chasing a toddler around, and I have been able to celebrate every single tiny milestone that Noah has reached because we have had three times as long to wait for each one of them and they stand out all the more. 

The part that opened my tear ducts is the simple fact that we have now officially approached the next level as a family with a special needs child.  He may be as cute as a button and babble and coo and cuddle but he is growing and growing fast.  He can no longer pull off the just-big-for-his-age look anymore.  He is 18 months old and as such looks like he is 18 months old.  He is really tall/long for any typical 18 month old and sitting in his stroller, car seat, or his portable highchair you can see that there is just something not totally "typical" about him.  Waiters, cashiers, and the every day person who doesn't know us are now taking a few extra seconds to assess our situation.

We have so far been fortunate enough to not have anyone really say anything out of the ordinary to us other than everyone thinking Noah is about to fall asleep because his eyes usually make him look that way.  "Looks like your little guy just woke up" "Somebody is about to fall asleep" "Allergies are getting to me too little buddy."  Just a few of the comments we have had so far which we always reply with "I think you might be right *insert big fake grin*"

I have been trying to prepare myself for the inevitable since learning about Noah's future.  Is there a way to ever prepare oneself to be mentally loaded with really good/nice/educated/mean/poignant/funny/embarrassing and/or factual comebacks or responses to dish out to people I don't know nor care about as I go about my daily tasks?  Is ignoring the situation or comment the way to go?  Do I try and use the moment to teach someone something new?  Do I use this person as an outlet to push my current days emotion onto instead of a family or friend I care about?  Will I be totally thrown when the first real negative comment is made or will my 18 months of thinking about all of this prepare me enough to be the bigger person and say or do the right thing?  What is the right thing? 

We are currently sitting right on the cusp where Noah's out-of-control hair, big toothy grin, and adorable laugh attacks are the topic at hand when approached by people we don't know.  I cherish these comments and remarks because Noah is still young/small enough for them to not really notice that he isn't sitting up on his own yet, or that he isn't able to hold anything or say a single word yet.  For now all they see is a really cute toddler that likes to lay back chillaxed-style in his stroller and laugh endlessly as I pretend I am a race car driver cruising down the frozen vegetable isle while his daddy pushes the grocery cart that he has yet to be able to sit in for more than 5 minutes assisted.

For now we are still going strong with the cute remarks but the lengthy stares are officially upon us. Sooner than not we will just find out what exactly my response might be when I get my first real negative comment from a stranger.  Anyone want to take a bet on how I might react?  I kind of already feel bad for my first "victim" because I honestly have no idea how my Momma-Bear-Self will be feeling after hibernating and juggling all these responses for an entire 18 months *insert real grin*

Noah wanted to copy his new cousin and get a matching crib mobile that projects pictures onto the umbrella...he loves it! Best vision therapy tool ever...and the music is pretty dang good as well :) ***yes...that is a slinky tucked above his crib that is usually hanging above him.  The day he can reach out and pull it down will be another day to go out and celebrate.  His feet might get to it before his hands do though...lol :)

Noah Rolled Over!!!!

Yesterday when I was getting ready for our PT to visit I had put Noah on his back in the middle of our front room.  He wasn't propped on anything and in fact I put him directly on the carpet because our dog was running around and I was trying to catch her.  I went into the kitchen to block our pup and when I came back into the living room Noah was on his stomach!  Noah turned over from back to front for his first time since...I don't even know how long.  I missed it!  I think around 3 months old was the last time he accidentally flipped over but then the infantile spams struck, the seizures struck, and the seizure meds took hold of our little boy.  He has been off his seizure meds for about 5 months now, he is currently 16.5 months old............and he turned over on his very own!!!

Today happens to be my fathers birthday and I think sweet Noah has been holding out to surprise him on his big day.  I have had tears of joy swelling in my eyes for the past ten minutes.  My mom and dad come over on Mondays and Wednesdays to help Noah with his rolling specifically.  Noah totally knew what he was doing and I am so proud of him.

Yay Noah!  (Happy Birthday Grandpa!)

***the video would not load for some reason so I took a bunch of snapshots so that you could see his wonderful new trick!