"My Story..." Monday: No One Knows Anything

(If you missed the beginning of this story, you can find parts 1-3 here:

• Part 1: She Got Hurt
• Part 2: Facing Judgment
• Part 3: The Hot Pink Cast
• Part 4: Brittle Bone Disease?

How was this even happening? How had it come to pass that our precious baby girl had gotten SO hurt from such a small fall and now we were learning that she had previously chipped a bone in her arm? And how could we have MISSED that?

The doctor with that news offered little information and little comfort... she let the news of C's chipped humerus hang in the air and then left. We had no idea what would be in store for us next.

It was Thursday afternoon now. We had been at the hospital for almost two full days. We were struggling to adequately comfort our poor little girl in her giant pink cast. We were also having a hard time keeping our one year old son happy and occupied in the tiny space of the hospital room. Blessedly, my sisters-in-law tried to provide some relief in that department and would pick up A whenever they got the opportunity, even if it was just to take him shopping at Walmart with them. I'll never forget the cute baseball sneakers my one sister-in-law (a mama to all girls) just couldn't resist buying for him on one of those expeditions...

Anyhow, that afternoon the hospital was to perform the bone density scans. We were allowed to go into the room and stay with her until she was sedated. The anesthesiologist warned us that her eyes would probably roll back in her head and that she may briefly convulse. Not surprisingly, this is disturbing for many parents. Nonetheless, we stayed. And our sweet girl just closed her eyes and was out. And we were asked to leave...

One of my husband's sisters decided to take our son home with her that night so we could both be with C.

It was another long night.

What I remember most about that one particular night is sitting in the rocking chair with my baby daughter, trying desperately to soothe her off to sleep. It was well after midnight and I had just given her a bottle of her special formula. (We had none of my frozen expressed breast milk with us, but I had stopped pumping months earlier. That was just another knife in my heart- the fact that my baby got NONE of my milk while in the hospital because it was over two hours away...) Not surprisingly, straight formula was a little tougher on her tummy than her usual "breast milk with a tablespoon of formula powder" cocktail. She spit up a big chunky mess all down my blouse--the only shirt I had, for the record... have I mentioned this??? But she was exhausted. And, after getting sick, she collapsed and fell asleep. And so I sat, sticky and stinking to high heaven, all night long while my precious girl got some zzzz's.

The next morning, I showered and begged my husband's dress shirt off of him and he wore just his white undershirt. We likely looked ridiculous, but that was really not a big concern of either of us.

It was Friday.

A doctor came in and we both looked up, waiting to hear the results of the bone density tests. This would be the most revealing test in terms of the potential Brittle Bone Disease diagnosis they had kicked around...

Instead, he shared this with us,

"Mr. and Mrs. S., since you didn't know how C. might have chipped her humerus, we spoke to a doctor from the infant ICU who suggested it may have happened while she in the NICU. Babies born as early as your daughter was have very fragile bones and, with all the needles and lines going in to them, apparently chipped bones aren't all that uncommon. Since they heal up on their own, nothing is generally done about them. Often they aren't even noticed."

We asked him about the bone density tests and he replied that he knew nothing about those and, by the way, why were they even conducting them? We explained the Brittle Bone Disease hypothesis and he basically scoffed and said,

"Unlikely."

And he left.

One thing I'd like you to know is that, in the two and a half days we had been there, we had never seen the same doctor twice while in C's room. And we got different stories from everyone. It was maddening. We would just about come to terms with one idea and a new doctor would show up and tell us that, no, it wasn't that, it was probably "xyz".

We continued to wait. We bought coffee and waited some more.

It was getting late in the afternoon. On Friday. We knew full-well that if someone didn't read those tests soon, we had no chance of being released until Monday. The thought of spending the entire weekend in the hospital was dismal at best.

My husband was rocking our daughter and our son was with my mother-in-law. Suddenly, I stood up, tears streaming down my face, and announced,

"I'm going to the NICU. I'm going to find our old social worker. I'm going to find a way to at least find out what's going on."

I think my assertiveness may have surprised him a tad, but was very supportive and nodded.

Off I went.

As I turned down the hall of our old familiar stomping grounds, I ran into the First Steps (Indiana's early intervention program) intake coordinator. She was excited to see me until she got close enough to see my distress.

"What happened? Are you ok?" she asked.

I started sobbing in the way you do when, all of a sudden, you are shown compassion.

"C. broke her leg... And the doctors in Pediatrics think... either I did it... or she has... Brittle Bone Disease... I'm wondering if Mrs. V. (our previous social worker) is around..."

She ushered me into a room where I saw another familiar face-- the Family Support coordinator. I asked about the social worker.

"Oh, JessieLeigh, she's on vacation until next Thursday," she said sadly.

My face fell.

"But let me see if I can help."

to be cont.