At Home

Allison was discharged from the hospital Monday afternoon. We had a wonderful night together. It is so nice to be able to hold her wire free anytime day or night. She is doing decently with her feedings. They told us she must have at least 50mL every 3 hours and that 60mL is best. She takes about 55mL each feed. They have me mixing special formula and vitamins in with her breastmilk to add calories and give her immune system a boost, plus extra iron for her anemia. I have been pumping bottles, mixing bottles, washing bottles or feeding her the bottles basically non-stop since I got home.

Unfortunately we had to make an emergency doctor's appointment for her this morning because she was having bloody stools. Since her bum looked really good to me and there was a fair amount of blood, I decided it was not a simple fissure and that I better get her in. They had me bring a sample in and the doctor has determined that she has a severe milk allergy. The milk fortifier I have been mixing in for Allison is milk based and I have of course been eating dairy products. All her insides are irritated which is where the blood is coming from. They have me now on a strict - no milk of any kind - diet. I got home and looked at our labels...there is some form of milk in almost everything so this is going to be tough. The Doc said it will be. They also switched the fortifier and hopefully she will get better over the next week or so with the change.

Besides that everything is good and we are very glad to have her home. We will be visiting the pediatrician once a week for a while, and we have surgery and cardiology follow ups in the following months. They will be making sure that her diaphragm patch is holding up well and checking to see if the little whole she has in her heart has closed up. As of now it is not causing her any issues, just a simple murmur - and they suspect it is going to close as she grows since it is so small.

Until we have any new news I wont be updating - I will simply be enjoying my perfect little angel and trying to keep up with her high maintenance little schedule. Thank you all for your love and support and for following our story.

1 comment:

  1. Enjoy being at home!!! So happy for your family. If you haven't found them yet - there are a few Facebook Groups for CDH parents - CDH Family, Touched by CDH and Raising Healthy Congenital Diaphragmatic Hernia children.

    Best wishes,

    Dooley Family