Let me start by saying Cohen has had another good day. He is still on 4 liters of flow and about 25% supplemental oxygen. His Aunt Amy even got to hold him for the first time today! He also had a large explosion while I was changing his diaper, and it literally flew on the floor (and my hand)! It was too funny.
As I have mentioned before, the NICU doctors work 3 weeks on and 3 weeks off. The first week they are back is spent rounding on the "long term" babies, like Cohen. This morning, we met with a new doctor that hasn't seen Cohen in 5 weeks. Let me say this politely.....the last time we saw her, she was leaving on her 3 weeks off, and I was NOT sad to see her go.
That being said, I was prepared for her to be more negative and tell us some worst case scenarios. She did not dissapoint me.
In her defense, Cohen is back on the same settings on the vapotherm as when she left. In her eyes, he hasn't made much progress. She would like to see us go to Vanderbilt sooner than later, and she mentioned problems like laryngomalasia, a condition when he has floppy air way tissue, causing lots of feeding/breathing problems. Then she said he might have to have a tracheotomy and a G tube. Needless to say, I have been busy googling and researching since I got in from the hospital. I have never hoped someone was more wrong in my life----
Justin and I are trying hard to not get worked up over what she said. We have learned that this is just her personality. I think she believes we are in denial, and that we just don't want to see that Cohen could have a permanent disability. She is partly right, I am just not willing to diagnose him until we are CERTAIN. We want to give him every chance to grow and be full term before we put him through unnecessary tests.
Please don't think I am not grateful for the doctor and her care for Cohen. I do think she cares and is knowledgeable, I just think she does not realize how scary this all is for us.
Thank you for caring about our family. We appreciate all of the continued prayers and support.