Better Explanations

I tend to be one of those people that just assumes others know what I am talking about and understand it, I'm sorry! It's one of my many flaws :) So, I am writing (two days in a row, woah!) to better explain the things I've mentioned with Emmie. Let me know if I missed anything!

- When I say "output" it means the amount of poo in her ostomy bag. Basically, part of her intestine is outside of her skin with a bag stuck to the skin surrounding it. The poo comes out of the intestine into the bag, which has a small plastic cap that we stick a syringe into and suction out the poo. This is measured in CC's, anything over 13 CC's is what seems to be deemed as bad. Yes, Nick and I do the suctioning. We love being highly involved in her medical care no matter how "gross" it may sound. Every 3 hours when we are there we take her temp, clean out her bag, change her diaper, dress her, check her broviack line, check all her cords, and check the bag for leaks. We learned today how to change the bag itself which is excruciating for Emmie and thankfully does not have to be done often, but always has to be done if it is leaking. Our nurse today told us we are pros and was highly impressed :) GO TEAM PARENTS!!!

-Why is increased output a bad thing? Well, more output means she isn't absorbing nutrients properly. Until that decreases she cannot get more food. It also could delay her second surgery, which means more NICU time. PRAY BIG that this changes and that her second operation will not get delayed. Her weight has continued to go down, she is at 6 pounds 12 ounces now. We need her to gain more weight!

- Broviack line: this was put in during her first operation. It is in her thigh and similar to a central line or PICC line. It was put in by my making a small incision and threading a catheter down through her leg. This is how she receives all medication, fluids, and fat emulsions. The fluids and fat will decrease as her food increases, but for now this provides more nutrients and is helping her weight. The broviack is a more permanent solution so that she does not have to get stuck for IV's every couple days, it will come out when she is ready to come home for good.

- Her feeds are currently at 40, an ounce of milk is 30, so essentially she is getting a little more than an ounce right now per feed. Newborns at this stage are typically eating 2-3 ounces which is why the poor baby is so hungry.

- Stoma, this is a second area where her intestine is outside of her skin. Nothing comes out of this, and eventually they will connect the ostomy to the stoma which will let her be able to poo into a diaper like normal. Once this is going well they will go back to surgery, re-open the same incision from her first and connect the two pieces of bowel together and place them back in her belly. Then stitch her up and all she will have is a kick butt scar :) and then *hopefully* it will be like nothing ever happened!

Emmie will need several types of doctors for a significant amount of time. We will have to be extremely careful with how and what she eats as she grows in her first couple years of life. We will be constantly in and out of doctors appointments too. The surgery sounds so simple but the process of healing goes beyond a successful second surgery. I have a few friends who had babies just before I had Emmie, I see pictures of them going home with their newborns, siblings getting to meet, families all together and I am truly envious. I am human, I cannot be strong every minute of everyday though I am trying. I am jealous that my baby isn't home and laying on my chest and driving me insane waking me up every 2 hours to eat and be changed. But, at the same time I am thankful Emmie is our daughter. I am thankful and HAPPY my friends do not have to go through this, that they have healthy, amazing babies who are home as they rightfully should be. I'm thankful we are strong enough to go through this and care for Emery. I am thankful God CHOSE us to be her parents and that He gave us this trial for reasons we cannot understand. I know that somehow we will be able to help someone else because of this experience, that maybe we will touch someone else's life with what we have endured.