Thursday, October 15, 2015

Choosing Life is Hard and Inconvenient {Part 2}

I feel like I can't just leave things like that. Confessing to the world that I am against killing unborn babies? Check. Peace. But admitting I could be on the fence about when to use medical advances to intervene and extend life? Uncheck. Still an unsettled question in my mind. So the next step in the conversation for me is:

As a Christian, when can/should we step away and not play God and allow a person to pass away when their body/brain cannot support life naturally?  (And don't get me wrong. I am all against suffering and totally for using medical interventions to alleviate any pain that accompanies passing.)

After Austin was born and we realized he was breathing on his own, that God did not take him, I sort of naively assumed we had been through the hardest part of the whole choosing life decision. I didn't realize that we would be making choices for him that involved other medical interventions besides being on a ventilator. I didn't realize that choosing life for him now that he was born meant a feeding tube.

I remember the doctors telling us that he would be physically disabled and mentally impaired, but I don't remember them saying that he might not be able to eat on his own and what the consequences would be if that happened. I remember that we discussed with the NICU doctor before he was born that if he breathed on his own, we would like him to be taken care of like any other baby born with problems. However, exactly how that would look was never discussed. And I think that while we were praying for a miracle, we took the ultrasound doctor's word that he wouldn't be born alive, so why discuss what we didn't expect to happen?

It's difficult to look back now and wonder how we got through the pregnancy without discussing all these possibilities, but really, how would we know unless the doctors had laid it all out? Facebook was pretty new to me at the time so I wasn't aware of any "special needs parent" groups where you can go now and ask all these questions. So all my information just came from googling the internet and reading the few blogs of other special needs parents of kids with diagnoses different than my son's. So if I did come across the information, I certainly didn't internalize it. I really trusted we would be taken care of by the doctors, that they would help us along.

So while the first few days after Austin was born are pretty vague in my mind due to my own need for surgery and resulting pain killers, i.e. morphine (another story to be documented in the future), I do remember that the NICU doctor, even after promising during our pre-birth meeting to care for him if he breathed, did not follow through with her promise and relentlessly argued and tried to persuade us to take him home and let him die. (I assume now, she meant on hospice, but I don't ever remember discussing hospice care.)

We had no idea just how actively she was trying to make this happen. For example, instead of being taken to the NICU, he was put in a crib next to me on room air in my hospital room in the orthopedic wing, not even close to being monitored and cared for with all of his potential problems from his brain malformation. So even though he was constantly moaning, and didn't seem to be getting deep breaths, we just assumed he was ok enough to be there. I mean, the doctor and nurses knew what they were doing, right? Who were we to question his care?

One day, I remember my husband telling me that he went to ask about Austin's yellow color, and that someone in the NICU pointed to the bilirubin blanket and said, "You can put that on him if you want." On another day, I remember my husband asking if they were going to feed Austin, and they said something like, "Oh, you want to feed him?" Then they came in with an orange Nasogastric (NG) tube, threaded it through his nose into his stomach and poured in some formula. I don't remember ever asking or being told why they didn't try a bottle first.

Finally, after 3-4 days of almost non-existent care, a NICU nurse came to my exhausted husband in private and told him that if he wanted to give Austin a chance at life, he needed to get him out of this hospital and take him to Seattle Children's. She said the NICU doc was known for getting on a pedestal about how kids like Austin born with disabilities should not continue to live because they are a burden on society.

It became apparent we were not going to get support from this hospital if we were going to choose life for Austin. And because we are Christians, choosing life for our son felt right so I let my husband do what he needed to do to get Austin to a safe place. And really, in my mind, morally, I did not believe we had any other option.

My husband had no idea how bad things were until we tried to transfer him to the children's hospital on the 5th day. The NICU doc refused to say it was medically necessary so my husband had to sign off on the orders promising to pay for the life flight. Then, once the team arrived to transport Austin, they found out that basic blood work and procedures that all babies have done had not been done for my son. They had to delay the flight until all those things could be checked off the list. They also discovered that his O2's were low, and that he should have been on oxygen for the past 5 days since his breathing was shallow. I remember my husband telling me all this later when I wasn't so out of it, and I can still feel the anger I felt towards this doctor for failing to do as she promised.

But almost five years later, and after all I've been through with Austin since then, I can now look back to those days with some understanding (not sure if it's forgiveness or not) in my heart for that NICU doctor. I can now see where she was coming from, how hard and inconvenient choosing life beyond just giving birth can be. So perhaps she actually harbored more compassion in her heart for parents like us than I gave her credit for. Perhaps she could see into our future and anticipate how challenging things would be or the emotional stress we would endure. Or perhaps she just didn't want her taxpayer dollars going towards supporting kids like Austin.


And of course, I can't just end it here either. Just because I'm being honest and admitting choosing life is hard and inconvenient, and that in a way, I wish I hadn't had the choice, I don't want you to think I have any regrets about choosing life for our son Austin at this point. So the next part in this conversation should and will be:

Since choosing life is hard and inconvenient, is it worth it?

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