Annabelle's Story: The Hospital

Annabelle Faith was born at 4:00 pm on August 16, 2013 and she was absolutely beautiful.  She weighed 8lbs 4oz and was a dream - she ate well, she slept well, she pooped up a storm like a good baby should.  She scored a 9 on her APGAR and all signs pointed to a healthy baby except for one: her left arm didn't seem to be moving as much as the doctors liked.

Her delivery was fast and she had been under some duress (the chord was wrapped around her abdomen and neck), so the assumption was birth trauma and the treatment was simply observation.  We hardly gave it a second thought as we fell head-over-heels in love not only with our beautiful new baby, but with the family of four we had become. 

We had a good 1st night in the hospital and made it abundantly clear to the nurses that we wished to leave as soon as possible.  The pediatrician on duty came to check Annabelle and was dissatisfied with her improvement so we were told to wait.  We were nervous now, but there was no indication that we should truly worry.  The doctor was casual about her inspection of Annabelle's limbs - none of which were poised in the roly-poly ball one would expect of a newborn.  I called my sister (a pediatric hospitalist) for consultation and comfort - I didn't realize the magnitude of her immediate purchase of a plane ticket.  She would be home the next day and I was just glad to have her support and expertise on my side...I didn't think she knew it could be the worst.  

The next morning the pediatrician came to check our girl again.  Still eating well and almost always happy, we just knew they had to give us a green light this time.  Again, a slight frown and a half-hearted "I think the neonatologist should visit her."  Hypotonia - general weakness of muscle tone.  That's all she could say.  Annoyed with the complacency more than scared of what could be wrong, I asked the doctor to speak with my sister, thinking that a 3rd party with some medical clout might elicit better answers than I was getting.  I was right and later Erin confided that the doctor was unsure how to tell me that Annabelle needed to be admitted for further testing.  I was furious.  A professional should be able to speak honestly with a concerned family no matter how hard it might be.  However understandable, my rage was redirected to concern and I asked  Erin for honesty.  She gave it to me - "it could be totally benign, it could be really bad."  That's all I wanted to know.  The pit of my stomach was a bottomless whole, but my brain - that amazing organ - knew I needed neutrality while I could still find it.  

We took Annabelle downstairs to the care of the NICU nurses and I was dealt another blow - they needed to test her suck-swallow reflex so she would be given a bottle.  My baby who had nursed so well and had nearly recovered her birth weight in fewer than 2 days could suck and swallow JUST FINE.  I was disproportionately devastated by their bottle-feed requirement - I needed to feed my baby for so very many reasons - but I conceded.  What choice was there? And, unshockingly, she fed marvelously.  I stifled my "told-you-so" sneers best I could (probably not well) and swooped her back into my arms.  

After several conversations with nurses and doctors, we were visited by a geneticist from CHOC who explained that she wished to test Annabelle for a wide variety of genetic factors that could be causing her hypotonia.   One by one, she listed the possible categories (neurological, muscular, spinal) and why she didn't think they quite fit Annabelle.  Still, she recommended the test, and we agreed.  She left with 2 small vials and I held Annabelle until the duties of a mommy divided between her babies slapped me in the face.  I sank - literally - into Ryan's arms when the doors of the NICU closed behind us.  A nun lamely prayed for us - what a job to have.  Even I, who needed Christ more than ever in that moment of separation from my baby, didn't appreciate her intercession.  

The next morning I was at the hospital with my dad for Annabelle's evaluation with the neonatologist.  His recommendation: transfer to CHOC.  Things moved fast except for the transport ride.  Much different from an emergency transfer, the driver never did more than 5 miles under the speed limit and turns were unbearably slow.  I sat in the passenger seat - not allowed to sit in back with my girl - tense, unmoving.  Worse though was the outrageous contraption they transported her in.  Much like what one would expect for a preemie needing oxygen, it was a plastic casing with holes for the paramedics' arms to prod in at her.  She was strapped down.  "She doesn't need all this" repeated in my brain.  

During the endless trip, her pulse ox level dropped - she was a shallow breather, I knew this already.  She just slept heavy.  I was just grateful she was calm during the trip.  I hustled (3 days postpartum) after the transport team and into CHOC's NICU - the most unfriendly place I've been.  The beds were all full.  The doctors were too busy.  The lights were unwelcoming.  There were no chairs, not even enough space to comfortably stand beside her once they found a spot among the other sick infants.  Annabelle was the biggest, most beautiful baby there - and that is not just a biased mother's opinion.  All the other babies were tiny and hooked up to a variety of tubes.  We felt out of place.  She didn't need to be here.  

I'm really not sure how we managed to survive the next 4 days.  I left the house before Makayla woke up and arrived in time for the morning shift change - this ensured that I would meet the day nurse and beg her to find out something, anything, about why we were there and when we could go home.  It also guaranteed that I could feed her before the nurse had a chance to give her a bottle.  Never could I adequately communicate that she was breastfed and that I would nurse as much as possible.  Somehow, the nurses never seemed to get the memo (although most were very supportive).  I stayed, crunched up in an uncomfortable chair that I pulled to Annabelle's side.  I nursed and pumped behind temporary "privacy" curtains that got in the way of the nurses station and left a huge gap anyway - I told them I didn't care to be "private" but every day we participated in the ridiculous rearranging of caster-footed furniture.  Often one family member or another was with me, but I was always there until the afternoon feeding.  In the evenings I came home to be with Makayla and Ryan - we went for walks, read stories, and tried to act like this was normal.  Throughout the night, I pumped every 3 hours, desperate to maintain my supply and give her as much as possible when I couldn't be in the hospital with her.

For 3 days, despite the beeps and suctions from adjacent beds and the "mmmmhmmms" from doctors, interns, and nurses, there was silence.  No one would tell us anything.  Annabelle needed no meds, no tubes, no treatments.  She was just waiting.  We were just waiting.  By the 3rd night I was done being patient.  Done being nice.  Out of fear that she might be mistreated if I acted poorly, I was kind to the nurses, but I was at my breaking point.  I arrived the next morning with my gloves on.  I wore real clothes; I brushed my hair; and, hands trembling, I prepared to make a fuss.  I was done waiting.  The fact that Erin came with me gave me great confidence - she would know how to read the situation far better than I.  The morning nurse met my concerns with great sincerity and she found the right people.  

As it turns out, my breaking point came at the same time as the results and by mid-morning Erin, Ryan, and I were crowded around Annabelle with the geneticist from days before.  She had an answer.  SMA Type I.  Erin sank.  I had no idea what was going on.  We were ushered down the sterile hallway to an ill-equipped conference room.  The geneticist and rounding neonatologist sat on either side of Ryan and I.  The geneticist began listing the same possibilities she had gone over days before and I nearly screamed.  I knew something was terribly wrong - I had seen Erin's reaction - I needed to know.  Terminal.  100%  The geneticist, perhaps attempting to soften the blow, declared that some SMA I babies live up to 8 years.  No, the neonatologist was mercifully honest.  We had a year, maybe.  

We had decisions to make - what course of action would we choose?  Would we take extreme measures to lengthen her life? Would we keep her in the hospital? Did we need a moment alone?  Thankfully Ryan was amazingly composed.  No, we wouldn't be taking extreme measures.  Yes, some time would be helpful.

While the team of specialists was assembled, we reunited with our beautiful girl.  The nurses had the look of knowledge.  Suddenly we got all the attention we needed.  We wanted to go home and they made the necessary arrangements quickly.

We met again, this time with a large team of physicians all staring, waiting for us to ask a question related to their specialties.  I can't imagine what on earth they thought we were going to say.  Objectively, it was ludicrous.  Pulmonologist, neuorologists, neonatologist, several interns, a nurse or two, and Gay Walker from TrinityKids Hospice care..."Hospice is for old people, not my baby."  I can still hear those ridiculous words escaping my mouth.  How little I knew.

Finally, papers signed, carseat in hand, we were ready to go.  During her "great escape" from CHOC, Erin pointed out the flowers, the colors, the sounds...it was the first time she'd even been outside.  For a moment - a very short moment - Ryan and I could forget the weight of what was to come - we were bringing Annabelle home.