Seven days to observe her then we go to the pulmonary pediatric floor. That means that if she does not desat or her oxygen sats does not drop below 85% for unexplained reasons, or if she desats and goes quickly back up, then it’s considered a good day for her. So we start counting!
When babies cry, poop, cough they all desat. It’s not like Dana is not allowed to do that. But the medical team in ICU wants to observe her for good 7 days that if she desats, she will be able to go back up. This means also when she hold her breath to cry or poop (or pas gas), she is able to relax after and breathe well again. This is because when she desats and it takes longer for her to recover, her heart rate drops and that’s where we get scared.
She desats mostly due to position of her trach. When she moves, it hits the tracheal wall and then she begins to be uncomfortable coz she can’t breath. We just position her again, she does well when her head is hyperextended (not to much that she gags on her saliva).
When her trach is positioned well, she is just happy. Dana has been a miracle all this time. She has been one strong baby. Now, she is hitting milestones little by little. But with the little that she can do, she gives me and her dad more than 100% happiness.
Dana has severe congenital scoliosis that affected her lungs. As she grows, her curvature may progress (or may not) and she may need a vent to help her with breathing. Can the scoliosis be corrected? Yes. And she is seen by the best spine doctors in Scottish Rite Hospital here in Dallas but with her being so small, she has to grow to be able to fit the smallest instruments for the surgery. So the plan is to let her grow first.
And while she grows, we are enjoying her milestones. She is getting there slowly and discovering herself. She has already two cute teeth and another tooth is coming out. She has become a drool machine. She is now able to raise her arms and legs. She is now able to reach and hit her mobile toys. Even with her trach, she manages to giggle while playing. Those chubby cheeks of her are so adorable.
She is slowly achieving her milestones and we will be there to celebrate it. I never knew that a simple kicking of mobile toys or a big smile from her would be giving an unexplainable joy. So this is how a mom feels and loves… that a simple feat from your child seems to makes the whole world seem to be a happy place. It makes me forget how bad my day have been or whatever stress I was feeling. I thank God for this opportunity. I thank God for our baby.
So here we are praying that she is able to have a good 7 days with the Trilogy Vent. We pray thay she continues to tolerate it and that if by any chance that she desats, we pray that she is able to breathe well again and get her oxygen sats back up again. We continue to pray that she is comfortable. We pray that we will finally be transferred to the floor and then to Our Children in Baylor (rehab) where we will be trained to take care of her having her vent.
And I will beg everyone who reads this blog to please include her in your thoughts and prayers that she makes it. Include her please in your thoughts that she will have good 7 days starting today. If she doesn’t, we believe she can do it again. God has a purpose for everything. He has a purpose for making is stay long in this hospital and we are grateful for that (as baby Dana now is in a much better state). And no matter how she dictates her course, me and her dad will continue to be with her in this journey with all our heart. We have a good and great God.