Tuesday, April 8, 2008

And the little one too!

I love that I was asked, about the second child that I have committed to. (Thank You Lisa!) I love that she isn't a forgotten child.

I wrote first about Margarita because of the immediate impact she had on me. Katerina (Katya) is also at the same institution that Margarita is and she is a child that I've had to use my brain first about. That's not usually my reaction to a child, but when I have a whole baseball team worth of kids already at home, I have to throw some experience and widsom into the mix when bringing new children into our home!

In order to understand why I had to slow down with regards to Katya we have to go back 7 years to when my first child with Down Syndrome (Jacob) came into our family and the impact he had on all of us.

Jacob was a love at first sight child for me. In fact, I didn't even need a picture. The moment I knew of his existence I knew he was my baby.

He had only been out of the hospital for two months of his 6 months and was in the foster home of a retired PICU nurse. She was married to a minister and he was opening a church in Hawaii and their entire family was moving. They couldn't take Jacob. She had only taken him from the hospital on the condition that by December 15, a Friday, he would have to have another place to go because they were leaving that Saturday morning.

The State had been looking for months for a foster home for him. They had done first a State wide search and then opened the search to the US. No one wanted a child with DS and Fetal Alcohol Syndrome. In addition, he was not legally free and his father was putting up a fight to get him. They had finally decided they would have to institutionalize him in a medical facility.

Although I was a foster home and did have a contract to take medically fragile infants and toddlers, my beds were full so I was not called about him. There was a waiting list for kids to get into my home and that's where a child's name would be put until I had an opening. Then the gate keeper (a social worker from the State) for my home and I would look at the list and the kids files and discuss the kids on the list to choose a child that would be appropriate for my home.

At that time I had one adopted child and 4 "Beds" . All the Placements desk could see was that I was full. What they didn't see was that I was just 6 weeks away from adopting Katie and that would open a bed. (At that time the capacity rules for our State were that you could have 2 of your own kids and 4 beds but no more than 4 beds) So although I only had 5 kids in my home, once I adopted Katie I could take in another child.

So, God works in wonderful ways! One day, our speech therapist, who was also a foster parent, was working with one of my kids and she mentioned that she was surprised I didn't take the little baby with DS and FAS. She had been called because she had a bed, but couldn't take such a fragile child because she worked full time. But she knew I had a special spot in my heart for kids with DS and lots of experience with FAS, so immediately she gave me the social workers info and I called.

I explained that I wasn't called because the right hand of the State doesn't know what the left hand was doing and that I would be adopting Katie and then I would have a bed.

I spent the next 10 days at the nurse's home training with her. At that time he had an N-G tube and he was scheduled to get his Mic-key button on Dec. 12. that was the 11th day. She took him to the hospital, and it was there that he was "officially" transfered to my care.

In the miraculous timing of God, he was released from the hospital on the 15th which was Adoption Day for Katie! I picked him up at the hospital in the morning and we went to court to adopt Katie at 2pm the same day. (The 15th being also the day the previous foster family had to have him gone!)

So that's how he came into our lives, but how he forever changed us is yet to be told. And I will make this part shorter. We spent the next three years wondering IF he was going to live. He had reflux so severely that he even had to be on a wedge to change his diapers. He was on the feeding pump for 23 hours a day because he couldn't tolerate more than 33ml/hour (about 1 oz) or he would reflux. That was true even after his fundoplication. He had never taken anything by mouth. He had no suck.

He was a silent aspirator. We watched in horror on the swallow study that the entire amount of barium went down his airway and he didn't even blink. No gag reflex, no sign at all that he was aspirating. He was hospitalized 4 times for aspiration pneumonia. He finally had a Nissan fundoplication.

He had tracheal and laryngeal malacia. He was on O2 as he couldn't breathe deep enough to keep his sats up. He had patent Foraman Ovale (hole in his heart that didn't close) Right ventricluar hypertropy, Severe sleep apnea.

He is classified as deaf/blind (although he is neither), has atlanto axial instability, has a severe latex allergy.

One of the times we had to 911 him I couldn't go with the aid car because I didn't have anyone who could watch the other kids. My parents are only 20 minutes away and they were ususally at the house on the other times he was transported and then I could go with him. But this time I had to wait for them to show up. So I was at the hospital about 30 minutes after he arrived. I raced through the doors to find which room he was in and there was a whole team working on him. One of the Doctors came out and pulled me aside and asked, "There's no code designation on his chart. Do you want us to save him?" WHAT?????????

"If I didn't want you to save him, I would have let him die in my arms at home! - Get in there and save him!"

This is just a smattering of issues and situations that Jacob brought to our life. And my other children suffered a lot because of it. My son Jonathan 13, especially, was traumatized by Jacob being taken by aid car multiple times, and the many hospitalizations in the three years where each surgery was life threatening. For example, to try to help with his breathing he had his tonsils and adnoids removed. Many kids even with DS are home same day with that procedure...Jacob was in ICU for three days with a tonsilectomy. His airway collasped one time when they just did conscious sedation to do an MRI.

I can't bring another child into my family that would require that much medical intervention and that much time of mine away from my existing family. That's not to say that any of them at any time might develop something that would cast us straight back into that experience again. But I cannot purposefully bring a child in that will need that amount of medical intervention.

From Katya's picture it appears that she may have a heart issue. She is extremely malnourished or not absorbing. She has severe strabismus in both eyes. The strabismus is not an issue to me as I worked for years with Eye Surgeons and know that's correctable and even if she is blind for no treatment for 8 years, I have two children who are visually impaired.

So I've kept my heart at arms' length with Katya, at least until recently. God is working on my fear. I feel it melting away and I believe that He will reveal to me when I meet her and see her records if I can bring her home. And if not her, then maybe another child is the second child I'm supposed to gather on my trip around the world.

As I said in my e-mail to Lisa. I have no concern over whether I will love her if I bring her home. I've had more than 50 children in my home over the past 15 years and it wasn't love at first sight with most of them. But within a short time there is no difference between the ones who were and those that weren't.

So, for now my plans include the little one too.


Julie said...

I'm so glad that you shared your story, and where your heart is with your upcoming adoptions. I pray that God will lead and direct you. God has a plan, and all you have to do is to be obedient to follow Him. I am touched to hear how God has already worked in your family. Thanks for sharing!

Dolores said...

Linda I love you and your story. This is great, so glad you are letting us be a part of it!

Kelly said...

Hi Linda, my 'soul sister'!!! I am so glad you've started blogging and I will be able to follow along. With love, Kelly (RR)