Day 63- Balloon baby and deep thoughts

Anya had a good post-op kind of day. Her vitals, oxygen, vent settings, etc all were stable all day. She was very comfortable. All that being said I still worried about her, because her belly filled up again with air, the largest it has ever been. It was not really affecting anything but when your two month old looks like she could have a baby herself, it is hard not to get anxious. Ana, one of the fellows with Dr. Kays came to check Anya out and we got to have a long discussion about her belly. A certain amount of air is expected to be retained after surgery, the bowel is manipulated and the sedatives make digestion sluggish. Her g-button site is open to allow any air to escape, along with a NG tube to suction it out, but they may not be in the right place to get all of it out. We feel a lot better after talking to Ana; it also helped that her girth measurements stayed the same. Measuring her belly is done routinely, so it won’t be missed if it gets worse.

I have not been able to bring myself to take pictures of her since this surgery because she looks a bit like she did in her ECMO days, and she is about as sedated. I feel like I am cheating somehow, like I should be documenting this for the future, to see how far she has come, but I don’t want to remember these days. It has to look worse before it gets better.

Anya is a lovely little baby. I have always had absolute confidence that I could care for her, no matter how complicated her care would be. But Anya is weird. Beautiful, but weird. One of the first things I remember from nursing school assessment classes is to look for symmetry,  that everything is even. Anya is not symmetrical; her left ribcage is actually smaller than her right. Sometimes when her stomach muscles contract her abdomen is round on one side, flat on the other. Nurses have had a hard time getting IV’s in her; CDH babies sometimes have oddly placed blood vessels. Her sternum is concave, making her look like she is breathing much harder than she actually is. On top of that, she does things clinically that stump the doctors; nurses who are not used to taking care of her sometimes have problems, not knowing her ‘normal’.

Now I have absolute confidence in Dr. Kays and all the nurses and support staff; they are very particular to only send the baby home when they are ready. I have been told that I will get a very comprehensive discharge instruction list, along with a good summary of her medical record. I have a team of doctors available to us when we get home to continue Anya’s care.  But I have to say I am a little intimidated. I kept thinking Anya would get to a place in her recovery where she would be on a more ‘standard’ treatment plan, instead of needing all of these special deviations from the norm. I don’t think that is in the cards for us. That is OK with me, but I still have concerns about when we go home, and we don’t have this team of experience with us.

I am starting to get a feel for her and her needs, but I wonder if I will miss something. Being a nurse helps but at some times it makes it worse. I am more aware of what can go wrong and it makes me worry more. At times I am afraid that the “Mom is a nurse” label I have may be detrimental: they may give me more credit than I am due.  I have never worked with babies, and never in critical care. My skill set is different.

I feel blessed even through these doubts. I am glad I have been away from the bedside for the last five years; I educate patients on caring for chronic illness now and I believe it has improved my critical thinking. Even though I am not familiar with everything going on with Anya’s care I can process and understand it better. I also have some experience with case management, coordinating with them when I worked in the hospital, referring to them in my current job, and then more importantly, helping my father during his chronic illness. I really don’t think that I could be in a better place mentally to work through this.

I do believe things happen for a reason. Many of you know that my mother died of lung cancer when I was eighteen. I worked with medical and oncology patients the first couple of years out of nursing school. I thought it was my purpose to use what I had personally been through to help others. When Dad got sick and needed a lot of support, I thought perhaps that was the reason God pushed me in that direction. Now I have reason to think he had another purpose.

I am proud to be Anya’s Mommy.