Adopting Aliyah - Part 7

Randy had a very important job while we were at the hospital. He was solely responsible for telling our families about our decision to adopt Aliyah and about the extent of her medical condition and what that might mean for her future. He did an awesome job! I was having a hard enough time dealing with my own emotions; I just couldn’t handle their shock and rollercoaster of emotions as well.

It seemed like medical personnel were streaming in all day long. Physical therapy, occupational therapy, speech therapy (feeding evaluation), nutrition, gastroenterology, neurology, social work, early intervention planning, etc. Whew! My head was whirling.

We were shown how to hold/carry her, bottle-feed her, feed her through her g-tube, vent her g-tube, dress her, stretch her, play with her, and lay her down to sleep. Everything was different from what I’ve done with my other babies. Randy took pictures of the various positions the therapists were showing us for us to reference in the future. The OT made resting hand splints for Aliyah to wear all night. She was also given “Joe Cool” splints to wear 3 hours on and 3 hours off during the day. As of the beginning of August, she no longer needs the resting hand splints because her hands are nice and open now. We continue to use the Joe Cools to help pull her thumb out to make it easier for her to grasp objects in the future. Also, her “orthodontic nipple” pacifier was switched out for a Soothie which requires true sucking to keep it in. We were told this would help with her oral muscle development. I never thought of sucking on a pacifier as beneficial for eating and speech later on in life.

Left hand - Resting hand splints (8 hours/night)
Right hand - Jo Cools (3hrs on and off during day)



Feeding Position - flexed body and A LOT of counter-pressure on the base of her skull to get her chin down for improved swallowing.  The blue mark on her abdomen is not a bruise.  She has these mongolian spots all over her body; they are common for dark-skinned individuals and should fade over time.  The huge diaper-covered splint just protected her IV line. - Day 3

This is how I sit in my sling...Day 4

 
Randy and I requested a consult with a neurologist so we could get a better understanding of Aliyah’s MRI results from January and what that might mean for her future prognosis. Yes, we had already been told by one physician, but a second opinion is always a good idea, right? I guess we wanted to know specifically which areas of her brain were damaged so we could get an idea of which systems in her body would likely be affected. After speaking with the neurologist, she left the room to pull up Aliyah’s MRI pics so we could look at it and discuss it together. When she re-entered our room, there were tears in her eyes…not good. She showed us extensive damage all over her brain. Diffuse cortical thinning meaning generalized whole brain volume loss. Fluid had filled in the areas surrounding her brain where the deterioration had occurred. She said that Aliyah would probably have to be fed through her g-tube for life. I said, “Wait a minute! She already drinks very well from a bottle!” She replied, “See, I am wrong 25% of the time.” Woohoo! Aliyah, you go, girl! Stay in that 25%!

 

We found ourselves getting very excited about seemingly insignificant things like a slightly bent knee or a somewhat relaxed, extended arm. It was amazing to watch the subcutaneous fat slowly filling in under her skin. It was most obvious in her face. Each day there was just a little more “cushion” than there was the day before. It was literally moving up the side of her face starting at the jawbone. Each day it was a centimeter or two higher than it was the day before. I was eager for it to get up to her temples to start filling in the hollows she had there. At one of the neurology team meetings, one of the head staff members asked a question about Aliyah’s ability to see. We all thought it pretty funny that the one thing she seemed to see best were eye glasses. She would stare very intently at anyone who wore glasses. If they took their glasses off, then she would stop looking at their faces and would track their glasses instead. Sunday, June 27th, at 5:15am, Aliyah smiled for the first time…looked directly at my smiling face and smiled back. What a gift to my heart! Prior to that, I felt like she loved me through her eyes; they held great emotion and spoke volumes to my heart. But to see her face light up with a smile…thank you, Lord!!! I knew there would be many more to come.

Lower cheeks are filling in - Day 3



Bent knee - Day 5

The staff at the hospital were AMAZING! There were a few who would lag behind their team showing special interest and concern for Aliyah and us in our difficult situation. Some of them even came and visited us on their break. Right before we were discharged on Monday, June 28th, one of the residents found a hospital birth announcement card for us and an ink pad so we could stamp Aliyah’s baby feet on the front of it. We asked her and a few other staff members who were so kind and supportive during our hospital stay to sign their names as the attending doctors at her birth. What a special keepsake commemorating Aliyah’s “rebirth” into our family…her real family. When we took Aliyah home that day, it was with joy and thanksgiving that we entered our home with our precious new daughter. When we came home with her the first time, the house was in a horrible state of clutter and chaos due to the unexpected speed of Aliyah’s adoption that week, much like my heart at that time. This time, we drove up to our driveway and were greeted by pink balloons on the picket fence. Upon opening our front door, we found a clean, organized home with an air of celebration…pink table decorations, streamers, a diaper wreath, and a “Welcome Home, Aliyah!” sign. Thank you, dear friends; you have greatly encouraged our hearts. This was our new beginning. I knew it wouldn’t be an easy road ahead, but it would be good with God holding our hand along the way.