Trachiversary

I think most people would find it odd for us to celebrate the day Evie got her trach, but it was the first day we really met Evie.  June 9th, a Thursday was supposed to be Evie’s surgery to place her gtube.  A few days before, the surgeon came in the room to take a look at her and basically said, “I’m not touching her.” Her breathing was horrible. She was having tons of apnea episodes.  She’d stop breathing in my arms, go limp, and turn purple.

Shudder.

I have absolutely no pictures or videos of her from May 30th-June 9th. It was a moment to moment time and I just couldn’t bring myself to take pictures when she was struggling so very badly.

June 9th before we sent her back. We honestly weren't even sure if she would make it that day.

June 9th before we sent her back. We honestly weren’t even sure if she would make it that day.

So instead of her gtube surgery, the ENT wanted to take a look at her nose and airway. We signed papers to allow a tracheotomy if he deemed it necessary.  Instead he came out triumphant that he had solved the problem. She had tons of scar tissue that grew in her newly opened nasal passages and he cleared it all away.  She seemed to do well after surgery and we were ridiculously grateful to avoid a trach.

That night we got a call that she had gone down hill very rapidly.  I still don’t know all the details.  I didn’t ask. I don’t think I want to know. They had to intubate her again and it was decided she needed a trach. We cried a lot that night, I think, but there was part of us that was glad the choice wasn’t ours. It’s all a bit of a blur.

We just knew that if it needed to be done, we wanted it done right away, but because she was successfully intubated, the powers that be decided her surgery wasn’t a big priority.  No room in the OR on Friday.  Weekends weren’t an option. Evie’s a fighter, though, and she did NOT like being intubated. She yanked that breathing tube out a few times, leading to an emergency each time. They maxed out on the sedatives, trying to keep her comfortable and still.

Monday was full, too, and they wouldn’t allow an after hours surgery. Our ENT called us apologizing for the hospital. He was so angry and anxious about the situation.  Tuesday morning, we finally got her into surgery.  By that point, she was so heavily sedated and struggling so severely, they didn’t even use anesthesia.  Just wheeled her down to the OR, did the tracheotomy in about 15 minutes and sent her back up to her NICU room.

I don’t remember seeing her immediately afterwards.  I thought I did, but no, I don’t. There’s a lot of things I think my mind just blocked out. But the sedation started wearing off and I do remember that.  Having her look at me.  Really look at me for the first time.  No more terror in her eyes.  No more arching and focusing on nothing except that next breath.  She was just a baby. My baby.  What I thought would be one of the worst days of my life turned out to be one of the best.  Honestly, it felt like THAT was the day Evie was born.  Our Evie.  That frightened little infant became Evie that day.  We went from having a sign on the door for quiet because she couldn’t handle distraction from breathing to joking that we needed a new sign saying, “Come on in and play with me!!!!”

Bright eyes!

Bright eyes! And probably trying to figure out how to get that feeding tube out of her mouth!

We really thought she had been doing so well in the first few weeks after her first surgery to open her nose. We truly, with all our hearts, thought she was doing great. We were wrong. Once we saw how well she did with the trach, we could see how poorly she had been doing without it.  We had no reference for what “doing well” was for her until that day. A common theme I hear from trach parents is “We wish we would have done it sooner,” and we are certainly no exception. Knowing what I know now, I wish we had trached her minutes after birth, but we do the best with the information we have at the time.

We are so incredibly grateful for Evie’s trach. It gave us our infant girl back, but it also gave us Evie for the first time. Happy Trachiversary, sweet girl!

Getting so big!

Getting so big! And of course you can’t even see her trach in this picture. Ah well. It’s still there!

 

 

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Big Sister Turns FIVE!

Our girls both have hymns with their names, though with Aleyna, the hymn came first (you can read about Evie’s name here).

We had lost our first child in an early miscarriage the summer before getting pregnant with Aleyna. We were heartbroken and scared we’d lose her, too. I’d been searching for names nonstop, but really wanted something with meaning. One Sunday, after a baptism, we sang ‘Great is Thy Faithfulness’ and the phrase “Strength for today and bright hope for tomorrow” stuck out to me. God was always giving us that. The strength to get through the here and now, but also hope for the future. I needed a reminder of that particular promise just then.

I knew there had been some names I had looked at that meant ‘bright’ and ‘hope’ would be such a beautiful middle name. I just loved the idea of our children having a hymn that belonged to their names. A hymn that would encourage them through their lives. We decided on Aleyna Hope and added Clara (which also means bright!) when we discovered that Ty’s grandpa, Clarence, had lung cancer. He died a few days before Aleyna made her appearance.

I always thought of her name and hymn being more of an encouragement to Ty and me, rather than to Aleyna. Until last night, her fifth birthday. I held our oldest daughter as she cried and cried that she didn’t want to get older. She didn’t want to grow up and have to leave us someday, like we left our parents. Aleyna is probably the most change averse person I’ve ever met. Three years later and she still talks about how much she misses our old white oven. A full year with our new bathtub and even though she says the new one is better for baths, she still wishes for the old one back. Could God have picked a more perfect hymn for a child that hates change? A hymn that extols the absolute beauty of our God who NEVER changes, who is ALWAYS faithful. We talked about it last night, how everything in her life, including herself, was going to change over the years, but 10 years, 20 years, 100 years from now, God would still be the same. HE won’t change on her. He will always be just as faithful, just as providing, just as accessible, just as loving, just as forgiving. God knew her when she was still in my womb and knew what encouragement she would need in her life. How blessed we are to have a God like that!

Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.

Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

Summer and winter and springtime and harvest,
Sun, moon and stars in their courses above
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.

Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

I made a video for Aleyna’s birthday, too, though she was extremely particular about which songs I chose! I suppose I should prepare for that with Evie as well!  We’re so very grateful for Aleyna.  She is such a joy and we’re so proud to be her parents.