Update: She will be on tracheostomy tube and g-tube. We are thankful for all your prayers. We are thankful that God has kept baby Dana in his care. Her scoliosis has progressed as she is growing, and with this is her left lung being more restricted in doing it’s function. Next week she will be ubder surgery for trach tube and g-tube placement. This will all be reversible. As we prepare for intervening with the curved spine.
On the course of her healing, tracheostomy is better suggested for her being on the vent possibly longer while we keep her lungs healthy. We would have wanted it otherwise, but we understand this is the most helpful option for her now. With this, she won’t have to be made to sleep most of the time and that she could actually move a lot (not until the surgical hole heals of course.)
And with babies having trach, we were informed that g-tube often goes with it just making sure that she will be safe with the trach. The g-tube means she will be fed directly through her stomach instead of her mouth.
Whatever heavy you feel while reading this is a hundred more heavy for us. But we look always on the bright side of everything. We always pray for acceptance and strength. It is not easy for us, but like any parent..we would want what is most helpful when our baby is sick.
She has been almost weaned from her IV sedation drips (yey!). This day, they weaned her more and she has been alert. We continue to pray that they progress on totally weaning her. Also, they are transitioning her IV scheduled meds to oral. She has been withdrawing as having diarrhea. Today, they continue with the plan and hope that her stools are better. They will be back to target feeding rate tonight, they had to stop it coz Dana had one time vomitted.
She is resting now, vitals are ok. She is a work in progress. She is a miracle. As they wean her off from everything, she dictates how things should be. We will be with her and whatever she can tolerate. It is heartbreaking to see your baby experience this when she should enjoy being a baby. But we will be stronger for her and be with her, how different her baby years will be. We pray to God to lead us where Dana is most comfortable.
Thank you all for your prayers. Thank you for all your love.