Monday, October 8, 2012

neonatology appointment

Let me start out by saying this appointment in itself had two pretty amazing answers to prayer.  One, Josh was able to be there with me.  Two, the neonatologist we met with was very kind and compassionate and willing to answer any/all of our questions.  Two pretty amazing blessings that weren't ever a guarantee.  

So the appointment was basically a meeting with a neonatologist (specialist in newborn care) to discuss what type of care we would like for Evie after she is born.  

We went into the meeting with the mentality that we want as few invasive procedures as possible and very little interventions.  The neonatologist, Dr. Siegfried, seemed quite relieved with our position.  In not so many words, he agreed that with the severity of Evie's condition even the most heroic of lifesaving mesures would be futile and he did not want tubes and NICU staff interfering with what little time we will have with our baby.  

So after Evie is born she will be suctioned to remove any excess fluid from her lungs (even healthy babies often need suctioning immediately following birth - Micah did).  The neonatal team will probably provide her a little bit of oxygen through a mask in order to provide her with a full tank, so to speak.  And then she will be given to us and we will be allowed to snuggle her for as long as possible.  No tubes, no monitors, just Evie.  

Of course one of my main questions was what can we expect in terms of Evie's longevity.  Dr. Siegfried said her life expectancy could range anywhere from dying in the birth canal to living for a couple of days.  We certainly prefer the latter but will be grateful to see our daughter no matter what. 

I actually only got a little teary once for the entire appointment.  It's pretty amazing the things I can say/think/discuss these days without getting very emotional.  It seems abnormal is normal to me now. Strange.  

But the one time I did get teary was when Dr. Siegfried discussed the possibility of Evie needing a comfort dose of morphine (or simliar drug) if she seems to be gasping for breath.  The thought of watching my tiny daughter struggle to breathe is a bit much.  So if you could pray against that I would greatly appreciate it.  The alternative scenario is just a steadily decreasing respiratory rate which will be much more peaceful, much like Evie just falling to sleep.  Please, Jesus ... 

Another item worth mentioning is that the medical professionals we have been meeting with are now somewhat skeptical at the original diagnosis of polycistic kidney disease.  The presence of multiple birth defects (heart, kidneys, bladder) leads them to believe that she might have a syndrome instead of just one disease.  The problem is, no one can put their finger on anything; there seems to be no label for Evie's condition.  But the professionals are kindly suggesting (and suggesting, and suggesting) that we have an autopsy done after Evie is born in order to get some answers.  Josh and I are not really on board with this.  Essentially what we are hearing is "We think this is a random occurrence and a genetic anomaly ... but you might just want to make sure for the future." 

At this point that is just not something we are comfortable with.  We have given it some prayer and thought and discussion and don't feel we will head in that direction.  The results of the tests will not impact our decision for adding future family members and so it seems a little pointless.  We might reconsider, but not for now.

It all seems a little surreal.  I told Josh through some tears that I wish at one of these appointments somebody would say ... just kidding.  There's nothing wrong.  You can take your healthy little girl home and love her and raise her for years to come.  Sorry for the mistake.  

Wouldn't that be nice? 

2 comments:

  1. I keep wishing to hear sorry for the mistake too, and I only know the sorrow as one hearing the story, not living in the heart of it. May merciful God have His way, and you, His peace, and in a him, hope.<3

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  2. I just want to let you know that even though I don't know you and only found your blog from someone else who had never met you, but had read your blog, that I am praying for you. Your blog has been an encouragement to me in your transparency of what you are going through and how you are allowing God to strengthen you through it. I find myself thinking of you throughout the day and praying for you. I will be praying specifically for the request in this post.

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