Where to we are now, Volume 4

I will be honest in saying that the first 3 months of Sadie coming home, I was in complete survival mode.  Looking back, sadly, many parts are a blurred memory.

I guess if we are honest, I would say that when we accepted Sadie's referral, at 13 months old, she was being assessed at a 2-6 month old level.  She showed alot of potential on future development and we just felt like we could offer her the world here.  I think ultimately we expected to bring her home and really eventually have a child that would "catch up" with therapy and maybe just be slightly delayed.

Once we brought Sadie home we were slapped straight in the face with reality.  She had a lot more going on inside her than we anticipated.

First was her feeding issues.  We would try to feed and thicken her baby food up with cereal and it would take FOREVER to feed her.  We worked on her drinking from a bottle and if we were successful in getting her to take in 2 oz in an hour, we celebrated!  We were not aware then that she was burning more calories when she was eating than she was taking in.  What is worse, was later we found that she was aspirating on everything she ate/drank.  She has a partial swallow, which means literally 1/2 of everything she was eating or drinking would go to her lungs. 

This was also true for her meds.  When she came home, she was on a seizure med and if she didn't spit/throw it up later, 1/2 of her meds were going to her lungs, thus not being metabolized properly.

When Sadie came home, our basement was under construction, so her crib was in our room.  We were finishing the basement to have a large family room and a bedroom for Ryleigh.  It didn't really matter where Sadie's bed was, as she rarely slept.   Ever.  We ended up acquiring a recliner from Nick's mom and spent most nights semi sitting up while holder her to sleep.  We later discovered that this was in part to a.) she was HUNGRY and b.) she had horrible acid reflux.  Exhausted does not begin to define what we were.  Beyond exhausted.

The first part of December we had an especially long night with Sadie.  I finally had her sleeping in our bed in the crook of my arm.  Nick was up and getting the kids ready for school and came and woke me up.  That was just the beginning of the longest day/week of my life.  When I woke I noticed that my shirt was soaked....and Sadie was twitching uncontrollably.  My baby was seizing in my arms.  I have never experienced a seizure before...very much new territory for me. I have no idea when it started or how long it was going before I woke...but judging by how wet my shirt was....she had been at it for a while. We called 911 and by the time they came, assessed, loaded and drove us to DeVos (priority 1 with sirens blaring) and upon our arrival, 45 minutes had passed and she was STILL seizing.  This began our first week of inpatient.

We spent the first few days in the Pediatric ICU.  It was there that they did the Upper GI and swallow study and learned the extent of her aspirations.  The stopped all oral feeding immediately.  My heart broke.  Eating is a huge developmental milestone...and it was gone, just like that.  She had the NJ tube, which went up her nose and down thru her stomach into the small intestine. This eliminated any concern for reflux.  She was on a continual pump, being fed 20 hours a day.

 

 

At 18 months old, Sadie weighed 18 pounds.  Due to her hydrocephalus, almost 10 pound was just her head.  So, she had an adult size head on basically a new born size body.  At 18 months old, she was wearing size 1 diapers!

 



While in PICU we had alot of things dealing with her health and development thrown at us.  What I remember the most was a doctor coming in and stating that she has been aspirating her entire life..basically drowning every time she ate or drank.  How she didn't die in Ghana from bacterial pneumonia is amazing.  Minutes later another doctor came in and said that he believed that she was dehydrated or near dehydration her entire life.  How she made it out of Africa without dying from dehydration, just shows what a fighter this girl is.  Then finally a third doctor came in and that doctor was just shaking his head reading notes on her.  He looked at us and said, the fact that this girl is here today...is a miracle. 

Miracle.  That was the only thing said to us that day that did not surprise us.  Sadie's life is chronicled by miracles.  Literally.  She is one after another.  If it is clear that the Lord has a purpose for any life, it is certainly hers, as with all the odds stacked against her, by His grace and by His protection, she is here with us today.

Tomorrow:  Ch...ch...ch...changes, challenges, angels and miracles.