Z's surgery day

Z's day started off pretty calm, the ENT doc explained the bronchoscopy and I signed the consent. Then the GI doc did the same about the G-tube surgery. The only wrench in the plan was that she was scheduled for 11:45am but at 9:15am they decided to bump her up to 10am! Richard was still on his way to the hospital after spending a long sleepless night at home with A and L.

Her nurse and I undressed her and got her bundled with her paci in the transport crib and we wheeled her down the hall and onto the elevator to go down to the OR. She told me to wait outside the doors and someone would call me. I kissed Z's beautiful round cheeks and watched her glide down the hall as the double doors closed behind her. A nurse came out to ask if I had any questions, which I didn't other than if I could give her one more kiss. She let me in and I told her how much we loved her and that we'd be waiting for her when she woke up.

I had to hold back tears, out of fear - that was my baby they were handling - she is a part of my me and I did not like not knowing exactly what was happening to her. I walked back upstairs to the waiting room within about 20 or 30 minutes the ENT doc came in and began to talk to us about what he found by doing the bronchoscopy. He showed of pictures of what he saw - that she has signifcant scar tissue on the left vocal chord - the right side looks well developed but the left side has a large growth of tissue on it that shouldn't be there and it completely blocking the left side. He said that he would not chase after it with surgery that he would monitor it and that as she grows it should receed and open up. At the mid-point in her airway there is a cartilagenous ring which is more narrow than it ought to be and there is a large ulcer - neither are worrisome and need surgery at this point and again she should grow and it should not be an issue. All of the above mentioned items are due to the fact that she was intubated for an extended amount of time.

The worrisome part came next - at the bottom of her trachea he saw that she has a condition called tracheomalacia which is known as "flacidity of the trachea" basically everytime she breathes her trachea collapses instead of remaining open thereby restricting her airway. So, not only are her lungs bad but her airway is severely compromised. This explains why when she coughs she then cries and when she cries she gets really mad because she can't breathe. All of these things, coughing, crying, refluxing, just breathing - they all cause her airway to collapse so she is in a constant state of catching her breath. Imgaine how you feel after you walk up 10 flights of stairs or do anything aerobically active that causes you to breathe so hard your chest feels tight - this is what it is like our our baby girl to breathe on a daily basis.

He said that unfortunately there is no surgical procedure to correct this and like everything else she has to grow so that her trachea will mature and strengthen. But what this does mean is that for her first two years of life a simple cold, stuffy nose, bronchitis, pneumonia, any illness whatsoever that effects her respiratory system will most likely send her to the hospital. In the worst case she would have to be intubated during an illness and if it gets bad she could have to get a tracheostomy. So Richard and I are pretty much going to keep her and her sisters in a bubble. So if you haven't met our girls in person, don't be offended if they are 2 or 3 years old by the time you actually meet them. We may have to build a glassed in room so people can come and look at them without touching them or breathing on them :)

So then about 30 more minutes went by and her GI doc came in and said she did great, the G-tube was in and they'd be bringing her upstairs really soon. We were able to see her shortly thereafter and she was still sedated and still intubated. They wanted her to wake up to see what she would do on the vent - hoping that she would breathe on her own and they could extubate her. She started to make these twitchy movements with her arms and legs and then her eyes started to open and before long she was awake and mad as a hornet. She had one hand on her G-tube and the other on her ET tube - she wanted that ET tube out and she wanted it out NOW!!! She cried and cried - huge teardrops rolling one after the other down her cheeks - her face was beet red, and her tongue was quivering with her silent screams. This went on for what felt like an eternity and was at least 45 minutes. Her blood gas was horrible, she was on 90% O2 and she was NOT happy. The RT called the neonatologist and told them to pull the tube and see what she does - she was fighting the vent so hard it was not helping her in any way.

We stepped out and about 30 minutes later the nurse found us and asked us to come in to help calm her. When I came in after Richard she was perfectly content tucked into his arms, sucking away on her paci and falling asleep. We could finally breathe - that experience with the ventilator brought back a rush of flashbacks to our early days and months with all three of them in the NICU and it was not good. It made me want to run out of the hospital screaming like a mad woman - of course I didn't because my sweet little Z needed me - but I literally had to make myself stay at her bedside during that fit and not burst into tears myself. I hate that helpless feeling when my child is in serious distress it is the worst, loneliest feeling in the world.

She ended up having a great afternoon - she even woke up and smiled and talked to her Daddy - who she absolutely adores. They won't try to feed her until tomorrow and we're hoping she'll get back over to northside my Sunday. The audiologist at Scottish will try and do another set of ear mold impressions for her hearing aids and the ones done two weeks ago are already too small. We picked out her hearing aids - they'll be pink for the part that goes behind her ear and clear with purple sparkles for the part that goes inside her ears. My mom is already trying to figure out how to make fake hearing aids for A and L who surely will want pairs of their own when they get older :)

So...that's it for now - we're just trading night shifts at the hospital with Z while she's at Scottish and the Grandmas are holding down the household with A and L. Thanks so much for all your prayers and support - we know this is why our girls are here with us today and we know this is why little Z has come as far as she has as quickly as she has. Please feel free to post comments on the blog - I don't have a guestbook section but your comments, prayers and even discussion is very welcome.

I'll get more picture up soon so check back!!!


Rhonda said...

dearest kiera - this story about Z is really touching my heart, for the simple humanity in it, for all the love you have for your girls. i think about you and your family all the time and i'm really glad you made the blog so those of us in Switzerland can keep up with everything :) your struggles become mine too and i hope you can see how well you are handling all these experiences. much love to you and your family, rhonda

nancy said...

Keira and Richard,

That is very good news that Z will grow out of these ailments, even if they will be Girls in a Bubble for a while.

This is an extraordinary on-line baby book you are creating for all three girls.

You two are just amazing parents.



nancy said...

Hi Keira,

I don't know what level of hearing loss Z faces, but you might look at this blog about the story of a cochlear implant--it is inspiring.



Naomi Levit said...

thank you for sharing your touching emotions about z's surgery day. please tell her auntie nomi is sending love and kisses her way(and your way too.)

Anonymous said...

Thanks for your comments, I look forward to the day when my girls grow up and we can share their stories with them. I'm sure it will be quite incredible for them when they can read all the wonderful support and loving words from those around us. Please keep commenting and I welcome discussion and information and other points of view as well.

Anonymous said...

Dear Sorrell's,
We hope that Zoe has settled in nicely back at Northside. We have been thinking about her...

Much love and hugs to you'll,
The Sheffield's

All time favorite video of Zoe!

Popular Posts

Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31