I hesitate a little bit to write this post, because I don't ever want to sound like I'm complaining or playing the "why me?" game. I only write it to give you an idea what it's like to have a heart baby. I recently heard several moms say that they never realized how selfish people were until they had a heart baby. My husband and I were very surprised to hear this, because our experience has been completely the opposite. We have both been moved to tears several times over the generosity and compassion others have shown us. I think what those moms meant is that people don't quite understand just how hard it is. They aren't selfish; they just honestly don't know how hard it is.
In order to help my friends and family get a little insight into my current life, I am writing this post. (Also so that some day when Christopher gets rebellious I can show this to him. He he!)
7:20am--Get up and get breakfast for Shannon and Leah, get them dressed, pack Shannon's backpack and her lunch, do her hair.
8:00am--Shannon's ride comes. (We have a wonderful neighbor who takes her to school since I want to take Christopher out of the house as little as possible.)
8:10am--Pump and drink a few glasses of water.
8:30am--Turn off Christopher's feeding pump, draw up and give him his erithromycin, aspirin (I have to cut up a baby aspirin into quarters and crush the quarter, then carefully get it into a small syringe and add water to dissolve it a little bit), and Zantac. I give these via the NJ tube and flush them in with a little bit of tap water.
8:50am--Mix 5 ounces of breast milk with 3 teaspoons of Pregestimil, then mix 4 ounces of that with Simply Thick so that he doesn't get any in his lungs. Pour 50 mls into a bottle and warm it up.
9:00am--Feed Christopher on his right side since his left vocal fold is paralyzed. He isn't allowed to go for longer than 15 minutes because he gets too tired and starts to choke.
9:30am--Detach his oxygen, feeding pump, and pulse oximeter and move him into the living room, then reattach everything.
10:00am--Make my bed, take a shower, and clean up a little bit.
10:30am--Rinse out enteral food bag and put 4 ounces of fresh food in it and turn the pump back on.
11:00am--Pump and drink more water.
12:00pm--Play with Leah, do some tummy time with Christopher, and clean the house. I wipe down doorknobs and hard surfaces with Clorox wipes and spray Lysol on everything else.
2:00pm--Pump and drink yet more water. Give Christopher his erithromycin.
2:30pm--Bundle up the boy and put him in his car seat. Hook up his portable oxygen and pack his feeding stuff into a backpack.
2:40pm--Go pick up Shannon from school.
3:00pm--Have Shannon change her clothes and wash her face and hands.
3:30pm--Turn off Christopher's food and do homework and reading with Shannon.
4:00pm--Feed Christopher the thickened formula/breast milk concoction again.
4:15pm--Help Shannon practice her piano.
4:30pm--Change out food bag, add food, and turn food back on.
5:30pm--Move Christopher and all of his accouterments into the kitchen so that he can join the rest of the family for dinner.
6:00pm--Pump and (yep, you guessed it) drink more water.
6:30pm--Load and run the dishwasher. (which I am still in love with, by the way!)
7:00pm--Scriptures, prayers, stories, and girls to bed.
8:00pm--Give Christopher his Zantac and erithromycin.
8:30pm--Snuggle my baby. (Ok, so I find other times to do this as well. Actually, as often as I can!)
9:00pm--Pump, drink water, and make enough food to last through the night.
9:30pm--Move the baby and all of his stuff back into the bedroom. Turn off his food.
10:00pm--Feed him orally again, then sleep for a little bit or watch a movie with my husband.
11:30pm--Rinse and refill food bag and turn feeding pump back on.
3:30am--Turn off feeding pump and try to stay awake while I pump.
5:30am--Rinse out food bag, refill, and turn back on.
Of course, this is just an idea. There are days like today when the speech therapist comes to weigh him and watch him eat and do some exercises with him. Then there are the appointments we have with the pediatrician, the cardiologist, and the ENT. And, of course, the all-too-frequent hospitalizations. Hopefully we can have him home for longer than two weeks this time, but I'm not holding my breath since everyone around here keeps getting sick, but I'm doing everything I can to prevent it!
Happy CHD Awareness Week!