Day 3: Dealing

"Through the blur, I wondered if I was alone or if other parents felt the same way I did - that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside its chest.”
-Debra Ginsberg

When you have a child that has a cold, you comfort them, pull out your book of home remedies and hope to relieve some of the symptoms. When you have a child that has a disease, you feel out of control. My daughter was diagnosed with hereditary spherocytosis - in English means that her blood cells are shaped like spheres. They also do not carry oxygen as well as normal cells due to their shape and the spleen kills a lot of the cells because to the organ, it is a foreign object and not a blood cell, of course unless her body adapts to it which would still cause a lower blood count but would be much easier to live with. Her father has it and had some complications in his life because of it. At three weeks old, her blood count had dropped down too low so I was called in for an emergency blood transfusion.

Going to a hospital full of sick kids with a newborn to get a blood transfusion...let me just say I was not having a good day. I also had to go alone, which made the situation more difficult. Seeing the doctors poke a prod my daughter with needles I was sort of used to now with all the blood work once we found out she had this blood disorder the day after she was born, but putting an IV in an infant...well that is a whole new project. I started out with 2 nurses around me trying to hold her still since her veins are the size of a dry piece of angel hair spaghetti. Then another came in, then another, then the one who was drawing her blood couldn't get a vein after poking her 3 times in both arms, so then someone else tries. All I could think to myself was WHY CAN'T YOU JUST GET IT RIGHT?????

An hour and a half after, they FINALLY got the catheter in for her IV. She quickly passed out from the exhaustion of wailing but that slumber didn't last long. Once they hooked up the blood to her IV, they had to put heart rate sensors on her which woke her right up again, screaming and crying. And to top it off whenever she cried, the heart rate sensor would alert the nurses because it was elevated - which happens when babies cry.

Needless to say, once this WHOLE event was done, she looked much pinker and happier. Now that I think about it, I was surprised I didn't notice how pale she was until I saw her after the transfusion. She has not had another incident like this since, and I am thankful for that. Even now when we do blood work just to follow up, its a nightmare now that she is growing bigger and stronger.

I am grateful for the doctors that she has/had in her life so far. Without them, they would not have noticed the symptoms of this disease and my situation could have been much worse than it really was. My heart does go out to the parents who have a child/children with a illness much worse than my daughter, such as cancer or down syndrome, who live their lives every day with so much bravery and courage.

Have you been through something like this? If so, feel free to share your story with us.