Bit of Fit

Today was another emotional roller coaster, not knowing what was happening next or what anything meant.

This morning our understanding was that our Utah specialist ENT and local ENT were going to connect, the pulmonologist was going to talk with Cincinnati, and they were going to make a trach plan for when it was happening and who was doing what.

I was braced for it emotionally.

Then the doctor for this floor came in after lunch saying that we were being discharged.

I. Fell. Apart.

I was not ugly, and I was not angry.

They said, “you can take her home if you feel we are keeping her comfortable.”

And I stomped my foot.

No! I am not comfortable taking her home to be comfortable, not when there are still things we can do, not when you promised an ENT consult, not when they said we would have a plan, not when she is purple and lethargic and unresponsive.

You might think that’s common sense.

But I have never said it before.

So far, I have done my very best to hunt down the specialists I could find, to do all they asked me to do, and been diligent and hypervigilant about all things airway: who holds her, how she is held, what goes in her mouth, who feeds her, how she is fed, how she sits, how she lies, how she moves, when she can stand or crawl or walk, and how much air we push through that coffee straw hole of hers.  I have done chest compressions, and called ambulances, and ridden in helicopters.  I have had a husband who doesn’t sleep, felt the wave of entire feedings wash over me as they sprayed out her nose, and I taught a four month old to drink from a cup.  I have shoved ng tubes back down her throat, turned screws to break her little face, and held her tiny body while she was on life support.  I have fasted, and prayed, and pleaded for blessings upon her head.

Just because I am comfortable taking her home, because I have this experience, doesn’t mean I should.

Just because I can, doesn’t mean it’s right.

I have spent a year keeping this baby alive, and I can’t.

I have failed.

I need help:

I can run a respitory unit from my house, I said, with her own room for night nurses and suctioning equipment, with the hum and hiss of concentrators and the long cords we tangle ourselves in as we trip over them while trying to maintain a semblance of family life.

But I cannot, I cried, I cannot run an ER from my house.  I can suction a trach, but I cannot force her to live. I can drive five minutes to the local hospital for help with a trach, but I cannot make it 45 minutes to the children’s hospital with an unresponsive complex airway baby.  One day she will stop breathing and we won’t be able to bring her back. 

That is when I started crying.

And so did the doctor.

And the nurses.

And they scattered.

And I sat down on the cold germs floor and sobbed.

It was an ugly cry, naturally.

I cried for the year we spent fasting and praying for this baby before she was born.

I cried for the day she was born, for those moments I saw her and held her on the first day of her life, which was also the first day she tried to die so many times.

I cried for the three months she spent in the hospital in Oklahoma City, and the time it meant away from our family, and the separation we endured as I stayed with her there.

I cried for the three weeks she came home, and couldn’t be on her back, and had no monitors or oxygen tubes.

I cried for her being sent home without a feeding tube, and how she had no suction for any bottle we tried, and how none of it stayed in her, and how her weight dropped so fast and all her tears dried up.

I cried for the night we were life flighted to Cincinnati, for what relief it was to find them, for how hard it was to be so far from home, and how painful it was to be thrown into that experience unexpectedly and endure it for two months on my own.

I cried for the pain she endured without help from medication during those days of distraction, for the hardness that came over her face, for the first surgery that changed her face from how I had always loved it to be.

I cried for the distractor drama, for all the feeding problems, and for the coughing up of the ng tube.  I cried for the falling apart of my family as time went on, and the miracles that came as they learned to function without me in the way.

I cried for the miracle of not hearing her struggle to breathe once the distractors were out, and for the explosion of growth that we saw.

I cried for the difficulty of flying home alone with a four month old infant with a feeding tube.

I cried for the bubble that burst when she began snoring again, which meant obstructions, which meant she was outgrowing her new airway.

I cried for every ounce of weight we fought so hard to get on that tiny frame.

I cried for the burns of stickers on her little face.

I cried for palate repair, another surgery necessarily adding the risk of blocking some of her too narrow airway.

I cried for the hardship of a two day road trip with a baby on oxygen.

I cried for the longing to do more to help her, for the confusion of which help is right, and for the overwhelming nature of becoming strong enough to keep this baby alive.

I cried because advocating for a trach meant she would have to endure it, and I cried for fear she will have to endure this next hard thing.

I cried for coming through so much only to be defeated before what she needs being granted.

So close!

I sat there, and I cried for three hours.

It was amazing.

I had no ideas I’d held so much in, but when you are doing chest compressions on a baby, that’s just not the time for therapy session.

Medical Trauma, I thought, of my own sort, different than hers.

The doctor came back to say they were keeping us another night so all the phone tag can happen and we can be sure the baby is stabilized before she is given a trach plan or not.

So here we are, another night in, and we still have no idea what will happen tomorrow.

My understanding is that we are making a trach plan, and the ENT will do it, but he wants all the doctors to agree.

And I don’t think Cincinnati will, since they do distractions without trachs.

So I am not sure they will agree.

But I do know something: that this baby finally woke up 26 hours later, at bedtime, of course, with her fever broken and her color better and eating as much as I could find for her! 

That’s something!

A waking up like that is the kind of something that makes a year like that worth it, every second of every horror challenge worth it.

Keep praying!


Posted in Family, Health, Life permalink

About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.


Bit of Fit — 2 Comments

  1. 5:a.m. California time. I am not a morning person, but I had to check on you – again – I love you. Praying, still praying, continuing to pray. <3 Yesterday I was in Merced to get my epidural so I can continue to walk, so I did not know the condition you were in until we returned to Mariposa, then my heart cried and pleaded for your blessing. I am grateful to understand that this mortality is not all there is, but I do so want Baby Girl to live – be healthy – you to live – be healthy. Your dear stressed Nathan to be healthy. Baby Girl to be adopted and be sealed to you (Did that happen and I missed it?) I love you all. I know everyone loves you. Praying, praying with love. <3