23 February 2014

Knowing when to let go: pt. 1

Personal journal entry from October 1st, 2013. (Third day home from the NICU):
"Noah's heart rate dropped tonight and he started wretching and vomiting. He was struggling to breathe and I told Daniel if it didn't stop we'd have to call 911. It was horribly scary and I was worried this was an indication of something really serious and that we might lose him soon. I'm worried maybe it's something with his heart, or maybe it's something else they haven't found yet. I'm scared that after all of this, after finally having him with us, he might die in my arms."

The day after we signed Noah's adoption papers we were bombarded with "he needs this surgery, we found this complication, this needs to be done NOW" and we didn't feel the slightest hesitation, not the slightest bit of regret. We felt "we are his parents", just as if we had made and given birth to him ourselves. He was OUR son, and so we carried on blissfully exhausted and thankful to finally be parents.

We went home and frequent vomiting episodes all day and night became our new normal. Most of our time was spent responding to emergencies (like having to clear his airway) or doing necessary things like slowly working on oral feeding, preparing and setting up G-tube feeds, and having appointments with home health, his pediatrician and specialists. Between the emergencies and the necessary things we were left with little time in the day to be split between our high needs infant and our active 3 year old. 

Formula change after formula change over the next few months to more and more gentle options made no real difference for him. We obsessed over every milliliter, replacing through his tube the approximate amount he had vomited out. His weight plateaued a few times but never dropped. In December his vomiting got even worse. He was having an even harder time recovering after each episode turning darker blue and staying blue for longer. We went to our weekly pediatrician appointment and I desperately explained why I felt he needed to be in the hospital. He needed to be surrounded by people trained to resuscitate him and with the equipment to do so. His pediatrician wholeheartedly agreed it was beyond my abilities at this point and he needed to be admitted right away. 

As we drove up to the Children's Hospital I was nervous, anxious. I wanted to get there NOW. I wanted him to be okay. I wanted to run inside, hand him to a team of waiting doctors and plead "PLEASE fix my poor baby!" and that was almost exactly what happened. Within the first hour of getting there they found he needed oxygen and got him all set up. Once I knew he was safe and everyone caring for him understood how urgent his situation was, I relaxed. I remember standing at the end of his bed and literally feeling like someone had been sitting on my chest for months and finally stood up, I could finally breathe, and my chest stopped hurting. Once he was safe I wanted to lay down right there on the floor and sleep the kind of sleep that only comes when you know everything is okay.


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During our foster care training last summer the topic of "the right family" was discussed and we were told about the following experience...

A couple adopted a brother and sister from foster care. The new dad ran his own business that required a lot of travel and the family traveled together. They went on road trips all over the region for work. The father had to travel to provide for his little family. The problem was that these kids had been removed from a homeless situation. They had slept most of their lives in cars, under overpasses, in random homes, etc. Traveling, even with these new parents, caused the little girl extreme stress. There were triggers everywhere causing her to not feel safe and to lash out violently at everyone. Even though these kids were finally in a safe, loving, stable, forever home, it wasn't the best place for them. It wasn't in this sweet girl's best interest to be in a family where travel was necessary to keep the family together. And so the parents decided to let these two kids go to another family, a family that was a better match for what they needed.


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Noah's hospital stay quickly started to wear on the family. Getting to the hospital each day was about an hour drive or an hour and a half taking two trains. Daniel and I casually talked about how much better it would be for him if we could dedicate all our time to him. If he were our only child we could stay with him all day and night. When Aurelia got sick during the hospital stay our options were to leave Noah at the hospital alone or to split up, so Daniel stayed home with her and I went to the hospital. We spent days apart and again, talked about how much better it would be for him if he were our only child. A few days before Christmas, as the three of us were driving home from the hospital late at night, we knew we needed to talk to our old caseworker about our thoughts and what was going on.

Kim, our old caseworker, had left to start a business (Utah Adoption Specialists), but we wanted to talk to HER. She really is incredible. She's direct when we can handle it (or need to hear it) which we appreciate, she talks us through things to help us figure out how we're really feeling, AND she responds and gets things done so quickly. Even though she didn't work for our agency anymore, she arranged a meeting for a few days later with her and our new caseworker. She has been one of the biggest blessings through our time trying to adopt.

At the end of Christmas Day Daniel and I laid next to the lit Christmas tree and talked honestly about what we wanted for Noah, what we wanted for Aurelia, and what they actually needed. Then we talked about what we could realistically do, what was within our power, what more could we do? We felt like we were giving him everything we possibly could but still coming up short, not just on what we wanted for him, but what we felt he needed and what Aurelia needed.

We knew that hospitalizations like this were going to be a regular and frequent part of his life, and it killed us that we couldn't constantly be with him. Daniel can't take half the year off work and I couldn't live alone at the hospital with a 3 year old and infant.

I told Daniel something like "biological families figure out a way to make things like this work. There has GOT to be something more we can do, something we just haven't done yet." He pointed out that if Noah were biologically ours we would have to stumble through, he wouldn't have another option, but the fact was that he did have more options. He had tons of local couples interested in him, couples who could fit exactly what we felt he needed to have his best life. 

In Utah there is a 6 month supervisory period starting when adoption papers are signed. This allows caseworkers to check in on the family and see how everyone is doing and adjusting. After the 6 months then a judge makes everything official and they are yours in every way. During that time we had physical custody of Noah, but legal custody remained with the agency. This meant that those other couples were a very real option for him.

I thought of words I had heard in our foster care training, "we find families for kids, not kids for families." The kids are the ones who need the families matched to their needs, not the other way around. Even though Noah didn't come to us through foster care, the sentiment was still true. He had to be the priority, not us. Even though we adored every little inch of him, his needs were the most important thing to consider.

During the meeting with our caseworkers we talked about more possible resources to help our family, and all our concerns and feelings about what Noah really needed in a family. We decided to get him home from the hospital, do everything we could to make things work and see if it could be done. I needed that. I needed to try again. I needed to have him home to really know absolutely if we just weren't doing it right before. 


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Our joy at finally bringing him home after a month in the Children's Hospital was quickly weighed down by a heavy realization. It wasn't that we weren't making enough time for him, it's that there wasn't more time to be given. It wasn't that we weren't using all our resources, it was that there weren't anymore resources to be used. There wasn't another minute in the day that could go to his care that wasn't already going there.

One night after putting Aurelia to bed, Daniel and I laid down on the floor with Noah to play and talk with him. He was so happy! I told Daniel, "look! He's so happy! I'm happy! We can totally do this." I slowly realized all of us were happy because he was getting our undivided attention. At that moment we were both entirely focused on him. There was two of us available, one to engage him, the other to manage his medical needs. It was as if he were our only child. I stepped out of the room. That's when the feeling came over me and I knew, just as firmly as I had known he was supposed to come to our family, it was time to let go.

(Knowing when to let go: pt. 2)

** There were many things involved in our decision and in this experience. These are the parts I'm okay sharing in such a public way.

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