Tag Archives: Treacher Collins Syndrome

Life as We Know it.


I try not to post things about the mushy sad side of dealing with a NICU stay. And there are a lot of things that I have questioned over the past four months this is the best Explanation I have seen as to why we are given the things that we are given in life. My family was not given a premature baby instead we were given Quinn who is amazing in her own right and has already taught us more than I ever could realize.  

A Perfect Choice
Finally, God passes a name to an angel and smiles, “Give her a premature child.”
The angel is curious. “Why this one, God? She’s so happy.”
‘Exactly, smiles God, ‘Could I give a premature child to a mother who does not know laughter? That would be cruel.’
‘But has she the patience?’ asks the angel.
‘I don’t want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother’
‘But lord, I don’t think she even believes in you.’
God smiles. ‘No matter, I can fix that. This one is perfect. She has just enough selfishness.’
The angel gasp, ‘Selfishness? Is that a virtue?’
God nods. ‘If she can’t separate herself from the child occasionally, she’ll never survive.
Yes, there is a woman whom I will bless with a child in a less perfect way. She doesn’t realize it yet, but she will be envied. She will never consider a ‘step’ ordinary. When her child says ‘Mama’ for the first time, she will be present at a miracle and know it! She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.’
‘And what about her patron saint? Asks the angel, his pen poised in mid-air.
God smiles. ‘A mirror will suffice.’


Quinn Marie Kougl – Newest Cowgirl

Quinn was born on 11/11/15.  After a short labor and delivery (thank gosh) she made quite the entrance into this world, seconds after birth she quickly turned grayish-blue and something was not right.  Our doctor did an amazing job of keeping her alive while the NICU team busted butt getting down to our room.

Quinn had a few things that were not quite right, she did have all 10 toes and fingers and the cutest little nose, but had underdeveloped ears and lower jaw, and a cleft palate.  The small, recessed lower jaw created a blocked airway for Quinn.  We didn’t know at this time but found out later that she has Treacher Collins Syndrome.  This was quite the shock, if you can imagine.  She had been healthy in utero, the scans all showed a healthy baby, hell we didn’t even know if she was a boy or girl and I didn’t find that out until about 10-15 minutes after birth.  There were no sweet holding pictures from right after birth, I had barely gotten to see her.  There were no hospital pictures with her weight (heck I wasn’t told an official weight, 6.5 lbs is close enough), no sweet siblings holding their baby sister.  I’m still trying to come to terms with a lot of these things that we have missed.


We named her about 2 hours after birth, come to find out later she had coded once in the NICU before we even had a chance to name her, William was there.  She would give us two more serious scares  in the Denver NICU before everything got sorted out.


At just 20-22 hours old we boarded a life-flight to Denver Children’s Hospital.  It was just Quinn and Mom, I had sent the Rancher back to the ranch with our older kids to spend the night as everything looked on the upswing.  I found out later that the life of the NICU parent can be amazing one minute and then awful the next.  After several weeks in the Denver NICU we finally had the official diagnosis of Treacher Collins, we went through an infection, as well as Tracheostomy and feeding tube surgery.  At around 4 weeks old we finally got to hold our little lady.  Again, a lot of things in life are just not fair, but all good things take time I guess.


Another week or after this we got to take her off of the ventilator and put real clothes on her!   Things started to get easier at this point and we began having hope that the end of our hospital stay was nearing.  Our big kids back home were needing their parents and their parents were definitely needing them.


At 40 days we finally got the blessing to go home!  We have a very unique little girl who struggles to eat from a bottle and will never breastfeed (hard for mom to accept) but yet is thriving thanks to modern technology and  the amazing things Doctors and nurses can do.  She will continue to work on the bottle and binkie as it is essential to develop those muscles for speech.  Right now she is soundless (meaning no air passes by her vocal cords) due to the trach.  That is hard to accept as a mother that she really has no cry, no giggle, no coos.  But such is our life right now.

Nurses Collage

Here are the amazing NICU nurses who saved our baby girl’s life and made our stay in Denver a little more bearable.  To these women I say THANK YOU.  Someday when I can write about it without crying, I will write about these wonderful women who will forever be a part of our lives.

Here is our little gift from God and the Doctor’s at Billings St. Vincent’s Hospital and Childrens Hospital Colorado.

IMG_5573 IMG_5545

We are so happy to have these three together.  Someday I will also write a post about the strength of our oldest two kids, but again, will have to wait until I can do it without shedding tears.  It will all  come in time.


Until then (and until we get back to fencing and cattle work in the early spring) you will get to know about our experience with Treacher Collins Syndrome on the Ranch and get to know our family a little better!

You can read more about our day to day journey through the NICU at https://www.youcaring.com/william-or-justine-kougl-468365  Or just stay up-to-date with our blog (or as up-to-date as I can keep it!).