I start this update to you as I watch Cooper and Chris play outside across the pond behind our home. What a lucky girl I am to be blessed with these boys. Cooper adores his daddy – he looks up to him in every way. I love watching him watch Chris, soaking him in, copying him.
We had the opportunity to meet with Dr. Krause, the neonatologist, yesterday evening. We’ve had a full day to digest the experience, to chew on and swallow the words she said. While they may not go down easily, hearing what she had to say was important.
She is a lovely person. Direct and informative, yet gentle and compassionate. We are grateful for the time she spent with us when we know how utterly valuable her time is. She truly cares for and provides medical treatment for the smallest humans, yet some of the strongest fighters. She came across neither grim nor hopeful but…real.
First, she took a few moments to ensure we understood each area of concern with Audrey’s health. An attempt to start with the basics. While it was a bit redundant, as we have spent hours and hours researching, we appreciate her attention to detail. She admitted she hasn’t seen Audrey’s chart or anything regarding her case, such as sonograms. However, from a conversation with Dr. Stanley, she seemed to have a basic understanding of the possibilities as Audrey makes her debut.
She was not able to give us a prediction on a possible outcome, but gave us several scenarios to be aware of and prepared for. She mostly spoke of situations in the case Audrey can be stabilized. The delivery is scheduled for noon, however, she suspects it will be closer to 1pm. We have now heard this from the OB himself, along with the NICU doc…I trust them. The hope is that before the C-Section takes place, a urologist would remove my stents. Then they can begin. From what I understand it can and typically does happen quite fast. All of a sudden, she’s out. They cut that cord. Disconnect us and evaluate her. Dr. Krause hopes that they can give me a glimpse of her before she is whisked away with Chris and they all go quickly to the NICU. She suspects that the first things to happen would be to place a breathing tube, as well as starting a central line. Hers would be through her belly button. Both of these must be done in a sterile area, so Chris won’t be able to actually see it take place. Probably good, that would be hard to watch. She let us know that as long as Audrey would need a central line, she cannot be picked up or held. Oh sweet girl, wouldn’t she need to be held and comforted so she doesn’t’ feel alone? While they do this, I will be stitched back together and wheeled to my room. She told me to prepare for the fact that most likely that it would be at least 6, potentially 12 hours before I would have the opportunity to see Audrey. A hard afternoon it will be on Tuesday. I am so thankful that Chris would get to be with her so she knows she isn’t alone, but has her daddy.
She reminded us that there is a chance she could have to have an emergency surgery, which would have to take place at OU Children’s, thus she would be transported and I, of course, would not be able to go. We have known this all along, but Dr. Stanley suggests that it just isn’t likely. There is a strong chance that she would need to be placed on a drug called Prostaglandin E1 , this drug would prevent the ductus arteriosus from closing and reestablish ductal patency if closure has already occurred. This allows her to be a candidate for heart surgery if and when she would grow and be healthy enough for it. Sometimes the surgery is done around 3 months, other times as late as 6 months of age. From what she told us, Audrey would have to be on the medication until surgery could take place. Unfortunately, the medication can only be provided intravenously thus requiring her to stay in the hospital the entire time she needs it.
She said to prepare for being discharged on Friday. How do you go home and sleep in your own bed with your teeny, sick baby alone 10 miles away? Will she make it to Friday? Will she not?
Dr. Krause assured us that medical care and decisions for and about Audrey would be a continuous and fluid conversation. She would be the one to coordinate which specialists may need to evaluate Audrey and when. She said Audrey may not be a preemie, but due to her small size and condition, she may act like one, lethargic, cyanotic spells, etc. The best thing for these small and ill babies is mother’s milk. She highly recommended that I pump to provide whatever possible if and when she is ready for it. It is good for mamas to feel needed and to have a sense of purpose in situations like these. Of course I would take her advice should I have the opportunity.
I am certain there are other details I haven’t mentioned but these are the highlights. She reiterated that until Audrey is actually out, Dr. Krause simply cannot know what they are up against or give us an idea of her outcome…her life.
By now, the sky is dark. The house is quiet. Cooper sleeps. Audrey kicks. Another day well spent.
Goodnight all, much love to each of you. I’ll write again soon…