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