2.11.13 The Beginning of Our Story

Looking back I see all the red flags, visibly bright and fluttering in that hindsight mirror. I see the slow process of Aimee's birth and her reluctance to breath the air of this world. I see the constantly sleeping newborn who wasn't able to eat. I see the lack of connection between us and her, the inability to hold herself, and the lack of change. I can even recall the fear in my heart that would not allow me to admit what I saw.

Aimee's story, our first step into parenthood, is not dramatic or shocking like so many other stories are. Instead it is slow, a drip of change and unexpected. The heat was has ever so slightly increased over time and looking back, there was no moment of explosive fire.

When Aimee was born, we were beyond excited. We had so wanted to be parents and had waited longingly for a couple years. We were googley eyed for Aimee and her sleeping cuddles. In our minds, with our heart desire finally met, the hard part was over and she was just right. We reasoned that people always say newborns are very sleepy, so she is just normal. People always say that breastfeeding is hard and you just have to endure, so she is just normal. People say when they are first born their little tummy is the size of a dime, so we gave her dabs of milk and she was just normal.

Aimee was fine 'til we found out at her one week check in with the midwife that she had lost about 2 1/2 pounds since birth. I was sure the problem was my inability, my lack of maternal instinct. We were given 24 hours to feed her as much as possible and see if we could get her weight up 1 pound. Daunting task. We followed orders, purchased a breast pump, and tried every trick in the book to get fluids into the little peanut. By the next afternoon, at 8 days old, we couldn't wake her up. We listened to her heart rate and it had slowed. Her temperature was low. She was very jaundiced. We took her to our local emergency room.

I was so afraid that she would be taken from us, that the hospital would turn us in for not feeding our child. Especially as they said things like starvation induced jaundice. Starvation. I had been starving my own child. I certainly had no mothering abilities.

Poor, orange baby. She was attacked in that ER by nurses and doctors taking spinal taps, trying to get IVs into tiny, extremely dehydrated veins, taking any blood they could get from her for tests. Every time the blood would congeal and be unusable. Aimee never reacted or made a peep. Late that night, she was finally placed in an ambulance and transferred to a better hospital. Upon arrival, the nurses immediately began to attempt blood draws, to repeat all the tests that had been attempted at the first hospital. We were raw. The poor, sweet nurse was eventually in tears too as we begged and pleaded for them not to take any more blood. Please leave her some, especially since each time it was for nothing. What a low moment, yet still we had no clue.

Aimee was there in the NICU for just a week. We pushed hard to have her released as soon as we could. Her weight went up, she was hydrated. We were told to be sure to see a lactation consultant and to get her treated for club feet. Nothing was wrong with our baby, it must just be me.

We had Aimee treated for club feet, which was time consuming. She had new castes placed weekly, her Achilles' tendons cut, and eventually she wore a set of special shoes attached to a bar 23 hours a day. But, this was just superficial. Aimee wasn't developing and we assumed it was due to all this added weight and awkwardness.

We tried everything to keep Aimee fed. I nursed, pumped, bottle fed, and repeated. She gagged, choked, breathed, and somehow managed to survive. It is horrible to recall how frustrated I was with her during that time. If only I had known how hard she was trying, how much she was fighting, I would have been so proud of her. I am so proud of her now.

When Aimee was 6 months old the questions started to pour in from every side. We suddenly had to answer to the big question of why we had ignored all the signs. One doctor asked why Aimee wasn't holding her head up, another saw that her head was very small for her age, and our family started to verbalize to us. This wasn't normal and we had to face the facts that we had ignored all along. A few would state that they had known from the beginning, as if that would somehow help us now. We had to finally admit, Aimee is different.

We took every referral, said yes to every test, talked to every doctor. We were desperate to find out the "what and why". Was it the jaundice and thus the starvation? Was it the slowness to breath after birth? Every question, every test gave us no peace. We found out that Aimee had a very small head that had scarcely grown since birth. We found out that it meant her brain wasn't growing. We found out lots of reasons why that could happen, had all the tests done, and yet none of those things had happened.

At first every doctor was interested and had ideas, but as Aimee grew and every test came back without answers, we were gradually left with no clues. We continued to follow up with the appointments and slowly found more problems, but never an overall cause and never anything we could do to correct the main issue. We eventually found that she should not have been fed orally and she had a feeding tube installed for all nutrition. We found that her hearing was impaired and had aids made. We eventually discovered she had been having seizures since birth and put her on medications. We finally discovered her vision was very limited. We found that she had low muscle tone that keeps her from building strength. We discovered she had sleep apnea and retained carbon dioxide in her blood. We were told that her life will, from a medical percentage stand point, be taken early due to her inability to fight sickness effectively.

And so, there we were left. We had no community to turn to who had experience or at least was dealing with similar issues. In our desperation to aid Aimee, to unlock the box she was trapped in, we threw ourselves and her into rigorous therapies. We continued genetic testing. We followed up on any tiny difference we could find, hoping that some clue would unlock the box. Our days were jammed with appointments, feedings, and exercises. And still Aimee remained mostly the same. She stayed trapped as a very young baby in an ever growing body. She has yet to hold up her head, despite her desire. She rarely makes baby babble. She is unable to track or even see objects and rarely finds the ability to fix on a face.

As she grows, more issues present themselves, issues with aspiration, with sickness, with positioning, with diapering, moving, transportation, and feeding. Our mentality has begun to shift as we no longer focus on what and why. We are beginning to let go of the attempts to push her, recognizing them now as attempts to "fix" her. Although continuing with an alternative therapy that does seem motivating to her, we have let go of our many therapies and exercises. We have simplified to keeping Aimee healthy, helping her discover herself, and allowing ourselves, family, friends, and even to an extent strangers to develop relationship with her as she is.

It seems we will never know the whole story. We must admit and face the limitations. We must help Aimee overcome the challenges that continually arise. Above all we must treasure, learn from, and delight in Aimee for the whole length of her journey.

And that isn't the end of the story for Aimee.