Friday, January 20, 2017

Home and All That I Will Always Wonder

The last few days have been intense.

We're home and I'm mulling over everything that's happened.

I hope being home is the right thing.  I pray Tessie never has another apnea episode.

And I wonder if we've had a small miracle of sorts  that I'll carry with me for the rest of my life.

I didn't know many of the details of how serious the results of Tessie's sleep study were until yesterday.  She stopped breathing 43 times during that night.  Apnea is when you stop breathing for more than twenty seconds.  Her blood oxygen fell to 79 percent for half a minute.

The paper in front of my says she says "Central sleep apnea, severe with moderately severe hypoxemia.  These respiratory events were mostly hyponeas but there were frequent non-periodic central apneas as well.  A minority of these apneas and hypopneas were post-arousal.  The respiratory pattern was ataxic frequently.  No snoring was detected."

I was told yesterday that when her information was sent to the PICU the doctor, he read it and told the nurses that he was planning on doing a tracheotomy when we arrived.  She would need to be on a ventilator.  I was told that he said that the one good thing was that she wasn't dead yet and if she was going to die she probably already would have.

And then we got there.  And she looked like this:

She was rosy cheeked and bright eyed and she said "hi" to two doctors and a nurse as they evaluated her so that "I think she just said hi to me" "Me too!" was heard throughout the room.

Now, let's go back.  At three months Tessie was no making eye contact.  She was missing major milestones across the board.  She slept all day long.  At five months she was still avoiding eye contact, and missing milestones.

In the last few weeks, since shortly before the sleep study, she began to be more alert.  She began to look me in the eyes and giggle.  She started making eye contact with everyone she saw, still smiling all the time.  Everyone who meets her is a friend.  Everyone.

The first suggestion was that the sleep study was wrong.  And that the labs were wrong.  Labs from three different draws, one processed here in Michigan and the other sent to Mayo Clinic.  And the sleep study must have been read incorrectly.

The debates began.  The pulmonologist called just as we were about to be released and said that the sleep study was not incorrect.  It was read by a pediatric specialist and it did show central apnea.  We needed to stay.

All the labs were redrawn, and sent back out, but it will be weeks before they're all done.

The EEG was done, she was hooked up to it all night long, and it came back normal.  No events of apnea.  The next night she was hooked up to an oxygen and heart monitor and again there were no instances of it.

"Does central apnea go away?"  I whispered to her nurse.  "Is it possible she's outgrown it?"  I asked.  She said that it wasn't and that she hadn't wanted to scare me when I came in, but that holding Tessie she'd been terrified because if she had central apnea than sooner or later she would have "an event."

Someday she would stop breathing and not start again.

Do you know CPR? one of the intensive care doctors asked.

A line of specialists came through the room.  She now has her pediatrician and neurologist, a pulmonologist, a geneticist, and a GI doctor.  There were many suggestions of many tests, some of which were done, many which weren't.

She drank a tube of barium like a champ.  Does that count as her third food?  Bananas, garlic bread and barium?  To be honest, she seemed to prefer the barium to the bananas.

But every test done in the last two days came back normal.  She was the picture of health, floating around the PICU cuddling nurses and giggling with everyone she saw.  And those developmental delays that everyone from her therapists to doctors have been monitoring?  Not one was apparent the entire time.

Last night, with a long print out of doctor's to call to follow up, we came home.  I nervously put Tessie to bed, where she slept through the night and woke up cheerfully this morning.  After I stared at her back for a good long time, breathing easily only when I saw her little back rise and fall.

I have so many questions.  Did she ever have central apnea?

Well, the PICU doctor who was there yesterday asked me if I'd ever seen her stop breathing.  I told him I had, six times.  The first time, at three months, when I saw that she was completely and utterly still.  I put my hand on her chest, Nothing.  I put my hand under her nose.  Nothing.  I raised my hand to her forehead, terrified.  "Please God, don't let her be cold.  Please God."  She wasn't cold and the moment I touched her she gasped and started to breath again.

"That is apnea." he said.

So she has it.  Or had it?  I don't know.

The day that our neurologist received the test results he called me.  I was sitting in behavioral testing with Tessie. I'd barely gotten any sleep the night before as they attempted to do the MRI and then a wired Tessie bounced off the walls of our hotel room when we'd tried to go to sleep.  And then in the morning I'd learned that Tessie's godmother had died.

That day as I ate breakfast and drove to the hospital, I kept thinking about one of the last exchanges we'd had on Facebook.  She had been too ill to come to the baptism as she'd hoped, and so a proxy had stood in for her and her husband.

So she had never met Tessie.  But she commented on one photo, "How can you miss someone so much that you've never met?"  I commented back that I couldn't wait for the day that she held Tessie.

That day never came.  And as I held Tessie that day, and watched her go into the MRI that night, those words were all I could think of.  Every time I think of them, I cry.  I wish she'd been able to hold and cuddle Tessie this side of heaven.

That night at the hospital, after receiving the news of the sleep study, but without any idea how serious it was, I sat next to Tessie and prayed.  I prayed to God to heal my sweet baby. I prayed for the repose of her sweet godmother's soul. And I prayed that if Elizabeth was before God, that she intercede for her goddaughter.

I sat there, prayers humming through my head as the magnets knocked loudly together, not yet even as terrified as I should have been, but afraid all the same.

As the debate ranged on around me yesterday, with tense conversations outside the glass of her room, while I heard bits and pieces about how there were mistakes or weren't, how there must have been mistakes because those tests couldn't have been right, my mind kept going back to that night beside the MRI machine, and that morning getting the call from her doctor and all those prayers I'd said.

Maybe the half of the people arguing for mistakes were right and it was all a huge error.  Except whenever I'm almost convinced I think of  the developmental delays that were so apparent, and how they were observed by so many medical professionals and therapists.

And she was sleeping twenty hours a day shortly before she hit six months old.  And I saw her stop breathing on multiple occasions.

I don't know.  And in this life I imagine I won't ever know.

But I think I'll always remember that night beside the MRI machine, praying that her godmother pray for her and imagining that she was finally holding Tessie in her arms as she lay inside the MRI tube so tiny and alone.

And when I think of it I want to say thank you a hundred times over.

Thank you, thank you, thank you.

And to those who have prayed here on earth, thank you too.

Whatever the reason our girl seems strong and healthy.

And as the test results began to trickle back in I'm going to be praying that the normalcy continues and that this whole thing will someday be an odd, nearly miraculous memory, all bright with the possibility of what may have happened and all that we can't know.


  1. "The Lord said, “Go out and stand on the mountain in the presence of the Lord, for the Lord is about to pass by.”

    Then a great and powerful wind tore the mountains apart and shattered the rocks before the Lord, but the Lord was not in the wind. After the wind there was an earthquake, but the Lord was not in the earthquake. After the earthquake came a fire, but the Lord was not in the fire. And after the fire came a gentle whisper. When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave." 1 Kings: 19

    God makes miracles, but He Himself is unseen. Sometimes he uses medical doctors. Sometimes He uses natural occurrences. He comes by, but He is in the whisper, and hardly noticed. He hears and answers our prayers.

    Yes, maybe Tessie's godmother stood before the throne of God and had a request from our King - would you, O Lord, do this one thing for me your servant?

    She couldn't have just outgrown all of this so fast. And even when you were remarking about her not looking at you and some of your worries, she always looked healthy and bright eyed in the photos you posted.

    I don't know.

    Is there some way that you can monitor her at home at night so you can rest easy? Is there some sort of monitor with an alarm her pediatrician can prescribe (to rent) that would be something she could wear at night and see if she stops breathing?

    Anyway, I am thanking the Saints for their intercession. Will keep you and your family in my prayers.

    God Bless.
    ~ Bonnie

    1. My daughter with obstructive sleep apnea due to tracheomalagia is hooked upto a A&B (apnea) monitor and an oximeter every night. Might be with asking about until you're confident these issues have truly resolved.

  2. So very thankful and happy! What a wonderful miracle!

  3. It seems a miracle to me too. I believe it. I believe that Elizabeth interceeded for Tessie. I will keep praying for your girl!

  4. I was offering up my kidney stone surgery this past week for her and asking Venerable Fulton Sheen to interceed. Glad for the good news.

  5. You're likely right that you'll never really know, this side of heaven. But it sure sounds pretty miraculous to me. Praying that future tests come back normal..


  6. As I look back over the past few months since Tessie has been here I have seen many changes and events that worried me and your Mom. The one constant has been your awesome Faith and the miracle of your mother's intuition or as I prefer your gut feelings. I honestly believe that both you and Tessie are integral parts of a beautiful miracle and I pray daily that this miracle continues for may years. So that we all can enjoy the many miracles of your five amigos. Love Dad

  7. Wow. That definitely sounds like a miracle to me!!!

  8. I turned 70 on Wednesday. It's been a week of parties and gifts from so many friends I didn't realized cared so much, or felt I mattered so much. I didn't read about Tessie's latest problems, but I saw so many times (especially of late) how often God has heard my prayers and answered them ---- in His way.

    My prayers on my birthday were for all those God brings in my life, especially those He knows are most in His need. I trust in Him. He has shown Me His love whenever I see His amazing blessings on those I know.

    Reading of His hand on Tessie, I feel blessed again. Thank you, Cammie, for through your blog you can be part of my life, and prayers, and He can be part of ours. A faith community is about sharing; thank you for sharing your life and faith --- and blessings.

  9. Miracles do still happen. Maybe you all got one! Still keeping up prayers for all of you. :-)


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