10/01/2026
Happy Thursday Bluestone Family! This is Allee with an update on Baby Mack straight from Dr. Snively!! š©·
BABY MACK UPDATE!!
September 30th, 2026
15 weeks and 1 day
About 3 1/2 months
43 weeks corrected
Our baby girl is finally growing! She was off her growth curve, but we are pumping the calories to her! She is 7.3 pounds!
We decided shortly after our last meeting that with her muscle weakness, no amount of growth and lung development in a month is going to give her any advantage in being extubated.
Even if Baby Mack could maintain herself without an endotracheal tube, we are looking long termā¦ the first time she gets RSV and is struggling to breathe in the middle of the night hours from the only hospital we will trust with her care, without a parent airway.
And suddenly it was a no-brainer.
Non-negotiable. We are getting a trach!
The entire team rallied around us when we made this decision. Even nurses that hadnāt cared for Mack for months were thrilled!
Why!?! Because of SAFETY! Because of developmental progress! Who wants a friggin tube in their mouth and throat!!?? Definitely NOT Baby Mack. She wants a paci so bad and canāt hold onto one well because of the ET tube.
Our original Fellow, Dr. Trajo, consulted with ENT immediately after our family meeting today and they said they want her to be 8 pounds prior to surgery. Based on her growth curve, we have a month, give or take, to reach the weight theyāre comfortable with.
Babies with a tracheostomy cannot take anything by mouth, so the coordinating surgery includes a g-tube for feeding.
This is what breaks our hearts. But you know what breaks our hearts even more? The thought of vanity or fear causing a catastrophe.
It wonāt be forever. And this is the fastest route to getting her HOME.
With that said, we are looking at quite a daunting timeline. Another month to grow, a week or two to get scheduled, a week of critical post-op healing, ~3 months on the trach in-hospital, and 12 weeks of trach training overlapping part of that to be able to safety care for our baby. In all likelihood, 6 more months in the NICU provided there are zero setbacks. So more like 8 in all reality.
We have to ask to hold our daughter. Sometimes itās a no because of safety and inadequate staffing. We get to see her every 5-7 days with our other obligations never ceasing. We are missing most of her little life. Keith can still count on one hand how many times heās been able to hold her.
I canāt begin to explain how hard this is. Two hours from our baby, Keith working full time, me going back part time, the farm, our animals, and our other babies. It is soul crushing. Itās lonely. It is draining us emotionally and financially. But somehow we keep pushing through it.
Specific prayer requests:
Please pray for our continued resilience. This is a marathon, not a sprint. We need fortitude.
Pray for Macaroni to bust through that 50th percentile so we can move forward with surgery.
Thank you to our warrior nation. We love each of you and so greatly appreciate your support.
