SEVEN Days

To be honest...writing about our trials has been very stressful.  I'm planning on this being the last of the past...my next post will be about present adventures.

In the "In the Beginning" post I mentioned that the pediatrician wouldn't tell us what he thought Samuel's diagnosis was.  He made an appointment for us to see a geneticist at Scottish Rite Children's Hospital in Atlanta.  His appointment was for feeding issues.  To get an appointment for genetic issues would take over a year; feeding issues:  2 weeks.  

Samuel was supposed to drink a certain amount of milk in a 24 hour period.  In order to do that, we had to feed him 1 ounce of milk every hour (around the clock).  I was pumping still (and continued for the next 15 months, he never latched on).  We were exhausted to say the least.  Physically, yes, but even more so we were emotionally exhausted.  The "not knowing" was too much.  We had no idea what we were facing.  So many thoughts ran through my mind. So many questions.  I clung to Jeremiah 1:5

 "Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."

God knew exactly what was going on.  He formed Samuel.  This was no surprise to God.  Somehow, that comforted me.  I even put that scripture on Samuel's birth announcements.

The Moses Basket would be Samuel's bed for the next 6 months.  Right by Mommy & Daddy's side. 

So, Samuel was 2 weeks old, we packed him up and went to Atlanta, about a 2 hour drive, for a feeding consult.  While there, they decided to put a pulse oxygen monitor (I would grow to hate this machine) on his toe while he was drinking from his bottle.  This stupid machine showed that his oxygen levels dropped while he was drinking.  After calling a few more doctors and nurses in the room, in and out, back and forth, they decided that it would be best if he stayed at the hospital for them to run more "tests" (I now detest "tests").  

"WHAT??!!" I thought, "I didn't pack any clothes.  We came here for an APPOINTMENT, not a stay!!!"

Don't get me wrong, had I felt that Samuel was in need of help, I would've been more than happy to do what EVER it took for my baby to be okay.  But Samuel was not turning blue, he was eating, pooping, peeing and sleeping.  What else do these people want out of a newborn????  Not to mention, (this might be TMI but...) I JUST had birthed a baby...I had "needs" that required rest and pads, pads, lots of pads.  A hospital is NOT a restful place. 

Thankfully, my mom and Michael's (my husband) sister were with us.  Mom lives in Florida, she was staying to help.  Dawn, my sister-in-law is a nurse (previously a prenatal nurse).  I couldn't have asked for two better people for that day.  However, nothing, NOTHING could have prepared us for the next SEVEN days.  The tests (that I can remember) are as follows:

Blood test to confirm what the geneticist suspected (RTS)
Sleep study
Swallow study
CT scan of nose
X-rays of chest (a couple of times)
Ultrasound of kidneys/testicles
Ultrasound of spinal chord
Heel pricks
Eye pressure exam (prying Samuel's eyelids open is a horrible image burned in my mind forever) poor baby

Treatments included oxygen and an NG tube (first insertion done by a student, Samuel couldn't breathe - horrible image, again)

We saw several doctors:
Pediatrician (the worst)
Pulmonologist (the best old Indian lady I ever met - seriously)
Gastrointestinalist
Geneticist
Ophthalmologist
Craniofacial surgeon
Ear Nose & Throat
I think I'm forgetting some.

Basically it came down to the sleep study showing a very unhealthy little boy.  The Pulmonologist came to our room after reading the sleep study and asked if she was in the right room.  She looked at Samuel and said "This is Samuel?  This can't be Samuel."  The Pediatrician wanted to perform four procedures/surgeries on Samuel:

1. Tracheotomy
2. Pull his jaw out
3. Fix a deviated septum
4. G Tube

Each surgeon deferred to the next because none of them thought he was in need of surgery except the Pediatrician.  We, basically, had to fight our way out of there.  We didn't want our boy cut on.  In the full 2 weeks, now 3 weeks of Samuel's life, he had not shown any signs of labored breathing, at all.  Not once.  He was eating, gaining weight, pooping, peeing and sleeping as much as they'd let him (you know what I'm talking about if you've spent any amount of time in a hospital).

Doctors don't know everything.  I am so grateful that we did not allow them to cut on Samuel.  I'm not sure we would have been able to stand up for him like we did had we not had each other, God and family with us.  Making a decision to go against a doctor's recommendation is serious stuff.  Especially serious when it involves your child.  Especially scary when you're making decisions for your child when you've been cooped up in a holding cell with machines that squawk, whistle and ding around the clock, with little to no sleep in seven days while living in your PJs.  I can't imagine what we looked like.  

We managed to get out of there with only NG tube equipment (which I never used), pulse oxygen monitor, heart monitor and oxygen.  We worked closely with our local pediatrician to make sure his lungs were clear and he was gaining weight.  He stayed on oxygen while eating, sleeping and in the car for 4 months (needless to say, we didn't get out much those 4 months).  He was always in the room with me. I watched him like a hawk, still do...

Samuel took naps in Mommy's arms if he didn't have his O2 on (2 months old)

Samuel getting skin-to-skin time (2 months old)