Well that was an interesting experience!

Well Jax, yesterday was a crazy day at the doctor's office.  While I would love to keep catching you up on how months 13-17 have gone, I think I'll share about yesterday's visit first.

Yesterday we went to visit your surgeon and nutritionist to check on your G-tube site.  Our surgeon is the BEST as you know.  He always holds you and makes you giggle.  He fixed your belly when your first surgeon (who shall remain nameless, because hearing his name makes me want to punch, cry, yell, etc...) did a botch job on your handsome little tummy.  He listens and says you are one of his favorite patients ever. His nurse says its because you giggle at all his silly faces, but I think like me, he sees how awesome you are! Anyway, I started off with the nurse and all her regular questions, new allergies, med changes, food ratios, etc...  Then I asked her to print off your growth charts.  I knew they weren't looking good, so I had prepped my mind to confront the doctor with this problem.  Today, I thought, I'm going to fight for your weight.

All the Xs are from different scales all over the hospital.  Weight varies from scale to scale.
  So from 9/10 months on, you my little man, are essentially the same size.

So the Dr. walks in, first turns to you and greets you with a smile and fist bump (he always remembers that you like to do that).  Then says, Hi Sandie, I'm extremely concerned about Jax's weight, lets address that first.  WHEWWWW.  All the pressure was gone, finally a doctor that was paying attention to this trend. Now Jax, you may wonder why ask a surgeon about weight gain?!?!  Isn't that GI or nutrition or General Pediatrics?  Aren't we only here so he can see your G-tube site, change it, and send us on our way?  Well 3 reasons. First - when we were inpatient during that dreaded Nutramigen, Elecare 24 day stay of vomiting, Robin (this drs nutritionist) was the one who listened to momma, went head to head with the OTHER nameless surgeon to fight for US!  She has held you in the middle of your uncontrolled vomiting, sang to you when momma was too tired to try to calm you anymore.  She calls companies to check allergies and NEVER believes that rare = never.  So these 2 amazing people come as a team.  Whenever we are inpatient, I have every floor nutritionist call her before they do ANYTHING.  Secondly, this surgeon has seen INSIDE your belly.  He knows its shape, seen the damage done by the reflux and the allergies.  Finally and most importantly, he has told me time and time again, that you, Jax are one of his mission babies.  He is going to see this through until we find a diagnosis/cure/treatment plan.  He wants to help you!  You are important to him!  Which is more rare concept than you would think at a Children's Hospital.  

So he changed that yucky med that made your belly hurt so bad (even when I BEGGED GI too - believing, like I do, that quality of life is most important).  We played with your calories and he is going to let you try to fit your pudding into your belly 2x a day!  He looked at all your blood tests.  Apparently during our most recent hospital stay, your labs showed that your vitamin D and potassium are dangerously low.  This was unbeknownst to me, but I will give them we were in the middle of snow storm and we were discharged by a resident. So he added those into your food, hoping to make you feel better.  He wants to see us back in 4 weeks, and he is hoping for weight gain!  While we may still be searching for the BIG answer, hopefully these increases and changes will affect the problem.  As he left, the doctor touched my arm and said, "You are a great mom.  We will figure this out.  You are a wonderful advocate and we need to see more moms like you, never forget that when things get hard."  Well if that didn't make me cry....lol.  But sometimes even moms need to hear that they are doing ok.  I often struggle with "did I push too hard vs not hard enough."

My prayer for you these next 4 weeks is that you gain.  We NEED you to gain weight!!  You have not gotten any bigger in 8 months.  Momma loves that you are her 'baby" but a toddler size boy is ok too!!  

   

Ohhhh and on a side note, we got stuck on a elevator for 45 mins trying to leave the hospital!  It was crazy! We were stuck between 2 parking garage floors.  Momma believes that God may have been protecting us from the accident we passed on 42 that seemed to take place about 45 minutes earlier ;-)  I love you always!

              xoxo,

                       Momma

Jaxon's First Year

Well, baby Jax, we are almost 18 months into this journey.  I haven't killed any doctors or maimed any nurses (yet).   Although I've wanted to, I promise you that.  These last few months have been an even bigger whirlwind of visits and hospital stays...but I digress.  Let me start at the beginning.

Jaxon O'Neill Bellwoar, born September 18th, 2012.  6lbs, 10 ounces of pure joy.  You came into this world on your 3rd attempt, after 2 tries thwarted only by doctors and their meds, (I was fully prepared to welcome you EACH time you tried to join us).  Daddy wasn't able to be there, he was literally half way around the world, but I can promise you he wanted to be!  You didn't cry for a few minutes and came out with your eyes wide open, taking everything in - all the noise and commotion - Mommy & Miss Melissa crying, nurses shuffling, trying to figure out why you hadn't cried yet.  Looking back and seeing your personality, we now know that nothing was wrong, that's just who you are.  You don't make a fuss, you're calm and forgiving.  Peaceful in a crazy world.  Joyful in times when most would be sad.  We started you on baby formula, as mommy was not allowed to breast feed (I promise you, drs orders, I was NOT allowed for your safety & mine.).  You did OK for the first 24 hours, then the nurses began to joke about you being a poop machine.  They thought maybe it would pass, and changed you to a gentler formula.  We went home and the pooping continued.  After 2 days at home, you were losing weight and I counted 15 poopie diapers in 6 hours!!  The doctor brought us in and changed your formula to Nutramigen.  Ahhhhh the pooping stopped!!  You were a good baby, sleeping and eating, still not gaining a ton of weight, but doing OK. Daddy came home when you were 3 weeks old.  It was the best day!

Your first 2 months were very crazy.  Daddy was busy catching up on his other job and figuring out how to be an amazing Daddy to 4 instead of 3.  We had Superstorm Sandy.  Businesses were closed, people didn't have food, electric, water.  Daddy was working non-stop, helping to turn the power back on, going on firecalls, accidents.  Mommy started noticing that this cough you were born with was getting worse.  The doctors had hoped it would get better, but it hadn't.  I took your siblings in for their flu shot and Dr. Andrews noticed the coughing and immediately ordered a chest xray.  They said the xray looked like pneumonia but they weren't sure.  That night you stopped breathing 8 times.  Mommy and Daddy were so scared and took you up to CHOP.  The next 19 days were difficult.  You had tests every day.  Breathing treatments and blood draws.  We spent time in nuclear medicine that made your insides glow (it was actually pretty cool). They finally figured out that you were silently refluxing all the way past your nasal cavity and aspirating on your reflux.  The doctors also said you had dysphagia (swallowing difficulties) with pooling on your larynx. You were also considered failure to thrive, meaning you had stopped growing, and had microcephaly, meaning your head/brain is extremely small.  Your legs were extra floppy and you weren't trying to roll over or sit up.  The drs said you had hypotonia, which means you have low muscle tone, and would possibly have trouble down the road walking, standing, etc...  They also said that you failed your hearing test. The doctors gave mommy and daddy training on an NG tube.  Yuuuuck!  We hated putting that thing down your nose.  But we did it so you could eat.  You had to be hooked to the feeding pump for 22 hours a day.  They gave you a bunch of medicines, told us to sign you up for Early Intervention and sent us home.  One of the attendings (with whom I'm forever grateful) referred us to Dr. Hogan's office.  As you know, Dr. Hogan, ROCKS!!!  She is a CHOP diagnostic and complex care doctor who manages all your different doctors and sees you as a "whole" baby, not just one specialty at a time.

We went to a lot of doctor appointments that December and it was decided that in January you were going to need a GTube.  You were always pulling out the NG and it was irritating the lining of your esophagus.  The surgery was fairly simple, it was what followed that was difficult.  You couldn't handle any food going through your GTube.  You would scream and cry, vomit profusely.  This went on for days.  You lost even more weight.  We were stuck in a holding pattern.  The doctors tried chimney feeding.  They put in an NJ (through your nose again - so you had both an NJ & G tube)  I begged the doctors to change the formula.  They said "no, it can't be that, we don't know what it is, but it can't be the formula.  He was fine before on the Nutramigen".  Finally I asked for a nutritionist.  I pleaded with her, saying "what is it going to hurt to try?". She agreed.  We stopped all of your feedings for 12 hours.  Then we tried Soy formula.  Oh my....within an hour you were vomiting and screaming, you became lethargic and dehydrated.  That was stopped and we gave you 24 hrs of belly rest.  Then we tried Elecare and we waited....nothing happened.  We got you up to full volume feed within 2 days.  You were eating again!!  Many months later we know that you had an FPies reaction and that with all allergic reactions, when your immune system becomes compromised (stress from surgery) that allergies can present more harshly than before.  They sent you home on an NJ (tube through the nose into the jejunum - deeper than an NG - which is into the stomach) and left the G in place.  It took almost 4 weeks for us to go home.  Over the next few weeks we went back to the hospital many times, you pulled out the NJ and it could only be placed under xray, so back and forth we went.  Seriously, I can drive to CHOP in under 55 minutes (lets just not tell daddy)  Finally you had surgery to turn the G tube in to a GJ tube.

By March you had started all your therapies and were starting to grow a little.  You had a couple sleep studies (you had mild obstructive sleep apnea) and an overnight EEG to check for seizures (none!!  wahoo). You still had a pesky cough, but seemed OK.  We learned, through your spinal tap, that when your brothers had gotten Fifths Disease (5th form of measles) that Mommy & you got it too!  It had crossed the placenta. A lot of babies who's mommies get fifth disease AND it crosses the placenta, don't make it.  They develop fatal fetal anemia or are stillborn.  You are officially our miracle baby!!  The Neurologist thinks this may be why you have hypotonia (low muscle tone), hence the severe GERD, as well as being developmentally delayed.

We were sent to a new surgeon, whom we love, and he thought it would be best to redo your GJ, turn it back in a G and put it in a better spot in your stomach.  He was also going to do a fundoplication (stomach surgery to wrap the stomach around the esophagus to help alleviate severe GERD (reflux)).  In order for him to do this safely, he wanted you to be 13 lbs - you had some growing to do.  In April you developed stomach prolapse and an inch of your stomach came out from around the base of your GJ.  The prolapse developed an infection for which you needed IV antibiotics.  We stayed in the hospital for 3 weeks, finally putting you on TPN (IV nutrition) so we could remove the current GJ, let it heal, have you grow so you would be ready for your fundo & second G Tube surgery.  The surgery was a success and just a few days later (after almost a month stay) we were able to go home!   

The summer went very fast!  You loved going to the beach and you worked hard in PT.  We learned more about your FPIES & EoE - both rare food allergies that happen in the gut & esophagus.  The reactions are delayed and for FPies can take 2-8 hours to show up.  Basically your insides have a reaction to the food, instead of "classic" allergies which can be seen from the outside (hives, rash, etc..).  We also learned you had asthma and a few "typical" allergies.  You got tubes in both ears. This definitely helped with your ability to hear.  You love to watch us sign though, so I think we will keep at it :)  You also had another EEG & probe down your throat for 24 hours that took "pictures" of what was happening.  You are still a "small fry", so the doctors called in multiple other specialties looking for reasons why you have trouble gaining weight, even with your incredible calorie intake.

But even with all that, you are still achieving, still smiling, still moving forward.

  Our goal was that before your first birthday you would sit up unassisted.  Well guess what?  You did it!!!  No pillows or anything to lean on, just you...hanging out!  Mommy and Daddy are so proud of you!  

September 18th, 2013 - A whole year old!