Crazy Faith

Friday, May 24, 2013

Maybe that's what it is.  Crazy faith.  Faith in what I can not see, but I know is there.  Faith that wraps me in a blanket and holds me through the storm.   Faith that something will work when everything else medically says no. 

Let me lay it out there for you.  The heart has to beat.  The lungs have to inflate.  Everything else comes after. 

When Alli was diagnosed with pulmonary hypertension, we didn't realize it was basically a death sentence. 

It wasn't like we didn't have a stack of cards against us at 14.8 ounces.  Her prognosis was bleak as is, but you throw the evil, evil, eeeeeeeevil pulmonary hypertension in the mix, well, it made it worse. 

Much worse.

But God is faithful and medicine is good.  I remember the first time I heard my daughter was going to be placed on Viagra.  I literally had to laugh.  And given the situation, laughter was not called for.  At this point in the game, we'd been thrown against the wall so much that laughter was all I good come up with. 

Viagra was our only hope, medically speaking.  Alli was too small for ECMO, too small for a heart and lung transplant, and very very sick.  Dying.  So we tried it and it worked like a charm.  

Being the smallest baby most of her doctors have treated using Viagra, it was controversial.  So the plan was to wean her as fast as possible.  She was weaned.  She did well for a few days.  And then it came back.

With a vengeance.   

When it came back, we had trouble getting it under control.  By this time, Alli was close 5 months old and our dreams of taking our miracle girl home were slipping.  She was creeping backwards....getting closer and closer to needing life support.  Again.

So being the stubborn people we are we pushed....and pushed.....and pushed. 

And God poured out wisdom into doctors who made an even more controversial treatment plan.  But it was the exact and perfect combination she needed and two months later, we were finally able to bring our girl home.  With strict orders to keep her well, knowing any.single.sniffle or even a cough around our baby girl could be the end (and I'm not being dramatic).  She just wasn't healthy enough to fight and her heart and lungs were too vulnerable and susceptible to any little thing. 

I remember sitting in a care conference while still in the NICU and Alli's cardiologist explained how he was confident at that point she would go home, but he wasn't sure she would live to see 2.5 years old. 

2.5 years old. 

Sickening news to hear.

That's 1 month from now.  He didn't think she would live that long.  Whoa. 

That's how serious this was folks. 

Yesterday, Alli went in for her follow-up with Dr. S.  She's not a fan of EKG's (it took 45 minutes to hook her up) and she's certainly not a fan of an echocardiogram.  We began her wean back in February.  Each month cutting her dose in half until we were down to just 1 syringe a day of Viagra.  Yesterday's pressures (which means pressure through the pulmonary artery) were 20-25 mm HG.  While we don't have a complete resolve of her PH she has remained stable throughout the wean.  With confidence cardiology discontinued her Viagra habit. 

Will you please pray that Alli's pulmonary pressures remain stable,  she continues to stay moderately healthy (sans respiratory infections), and growing?  At this point, those three things are the best medicine for her Pulmonary Hypertension. 

And THAT my friends, is a big fat Hallelujah!!!  God, you are oh so faithful.  Thank you Lord for leading us to your healing. 

After lunch with my BFF, we headed off to Alli's Physiatrist (that's NOT psychiatrist) appointment.  Dr. W and I agreed that a sedated MRI will be done this summer.  While Alli did have an MRI done while still in the NICU, she was not sedated.  We are thankful that she never suffered a brain bleed, but one concerning thing has always been asymmetric enlargement of her lateral ventricles.  While this could mean nothing, which we've always believed, further investigation is needed.  And a sedated MRI would show us more.  

We also received the go ahead for ABA Therapy.  Applied Behavioral Analysis.  It's a therapy commonly used with Autistic kiddos. 

But wait, I thought you said she wasn't Autistic.  

Well, she's not.  I mean we don't know.  She could be.  The fact is, she has a lot  of characteristics.....

  • Very little or no eye contact. (this is getting SOOOOOOOO much better)
  • Resistance to being held or touched.
  • Responds to social interactions, but does not initiate them.
  • Does not generally share observations or experiences with others.
  • Prefers to be alone, aloft or overly-friendly.
  • Unaware of/disinterested in what is going on around them.
  • Minimal acknowledgement of others. 
  • Ritualistic or compulsive behavior patterns (sniffing, licking, watching objects fall, flapping arms, spinning, rocking, humming, tapping, sucking, rubbing clothes).
  • Fascination with rotation.
  • Play is often repetitive.
  • Difficulty transferring skills from one area to another.
  • Frustration is expressed in unusual ways.
  • Transitioning from one activity to another is difficult.
  • Difficulty attending to some tasks.
  • Gross motor skills are developmentally behind peers
  • Fine motor skills are developmentally behind peers
  • Causes injury to self (banging head).
  • Sensitivity or lack of sensitivity to sounds, textures (touch), tastes, smells or light.
  • Difficulty with loud or sudden sounds.
  • Unusually high pain tolerance. (this could be attributed to her medical history)
  • Intolerance to certain food textures
  • Desires comfort items (blankets, teddy, rock, string).
  • Laughs, cries or throws a tantrum for no apparent reason.
  • Resists change in the environment (people, places, objects).
  • Becomes overwhelmed with too much verbal direction.
  • Tends to either tune out or break down when being reprimanded.
  • Calmed by external stimulation - soothing sound, brushing, rotating object, constant pressure (hammock, rolled in a blanket).
  • May need to be left alone to release tension and frustration.
  • Walks on toes.
  • Unusual gait.
  • Difficulty changing from one floor surface to another (carpet to wood, sidewalk to grass).

  • It's really too soon to tell and her sensory issues can act like characteristics of Autism.  There's a fine line.  This is NOT a diagnosis of Autism.  And it doesn't hurt to be proactive, especially at her young age.  She most certainly has Sensory Processing, but could potentially be on the spectrum somewhere.  We just don't know. 

    The research I am reading, videos I'm watching, and professionals I am speaking with all seem confident this could really help our girl.  However, it is extremely intense.  And with two older kiddos, intense scares me.  But, we'll do whatever we have to for our girl.  We are encouraged and excited to get this party started. 

    Last but not least, feeding therapy was discussed.  Even while John and I agreed we would wait, I still research feeding almost daily.  It's just part of who I am now.  Last week, I came across The Marcus Autism Center for Pediatric Feeding Disorders in Atlanta.  I was loving what I was reading, behavior approach meets sensory, but I had never heard from fellow tubie Mama's this particular program mentioned. 

    So I brushed it off.

    As we were closing our conversation yesterday with Dr. W., she asked if I had ever heard of The Marcus Autism Center for Pediatric Disorders.  To say I had cold chills would be an  understatement.  This women is smart.  Brilliant.  And I respect her word and opinion.  While she admitted she was not completely sold on the program, she did say she had 2 patients, similar to Alli, who went through the program with some success.  While these patients still had their g-tube, they WERE eating pretty well by mouth at the end of the 2-4 week intensive program.   We talked about our feelings and opinions regarding the various tube weaning programs and shared similar views.  At the end of our conversation, she said...

    "Of all the ones I know, this one you have to at least try."

    And so we are.  The referral is being sent today.   

    Would you please pray with us that this direction gets our girl to eating?  My crazy faith tells me we're on to something.  I can feel Him all over it. 

    As always, we are humbled by those who follow our girl with prayers and cheers!  We love you all! 

    1 comment

    1. Hi Jackie
      I've been following your blog for a while now. Thank-you for sharing your story.
      Your girls are just beautiful and seem an absolute delight.
      I just wanted to stop by and comment on how whenever I read your blog I am always blown away by how similar Alli's health and development situation is to my son Owen's.
      Of all the blogs I read I have not encountered another child's journey that has had so much in common with Owen's.
      Right down to the lack of amniotic fluid, pulmonary hypertension, chronic lung (and all that goes with that), low muscle tone, sensory issues etc.
      I hope that others look at my boy and see the absolute joy that he is just as much as I see it when I read about Alli.
      Again thank-you for sharing and all the very best to you and your family.


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