Last few days...

We are still on CK-3 and we've had good moments and bad ones. Ethan has started and stopped feeds multiple times now because he seems to not be tolerating it and he throws up, so we're hoping all he needs is more time. And he had a really high fever, which has now come down, and we don't know what the source of the fever is yet....they took samples from his blood (from a vein in his arm), the central line, pee (using a catheter), and his nose (using suction). The results can take 24-48 hours, so as of right now we still don't know what's going on. The doctor thinks the central line will be the source of infection, in which case it will need to be taken out and the TPN will need to be administered through a regular vein.

It's hard to believe that of Ethan's 104 days of life 50 of them have been spent in hospital (52 if you count the days we went to the Emergency Room and weren't admitted). Our lives have been put on hold...there are still wrapped shower gifts in the living room, 4 weeks of recycling in the blue box, the bare minimum of laundry has been done, the fridge is empty, all of Ethan's things that were out when we took him to the hospital are still in the same places.

A day in our life looks like this:

6:00am - Tammy & Ethan get woken up by the lab technician that wants to poke him in the heel to draw blood samples for his TPN

7:00am - The surgical students and residents come in the room to do rounds (they report back to the surgeon to get a final decision on the plan for the day)

Throughout the day - usually every time I get Ethan to settle down to sleep - someone comes in the room because they want to check Ethan's vitals, measure his belly, change IV pumps when they beep, clean the room, send us for xrays, talk about pain management, talk about chest therapy, talk about oral stimulation, remove tape, change dressings, insert IVs, give antibiotics and the list goes on and on and on....

Lunch - Dale will come to the hospital and bring food if his work schedule allows

The list from above continues through the afternoon

Evening - Dale comes straight from work and either he or I will go get dinner from the cafeteria and eat in the room, sometimes I take a nap because of the chaotic day while Dale stays up with Ethan. Then when he has to go home because we can't both stay at the hospital I feel sad because our few hours of "normal" has to come to an end. Somedays I need to come home to shower, so Dale will stay with Ethan until I return to the hospital and then will have to leave because he has to work in the morning and we don't get to spend any time together as a family.

Night - I get up with Ethan when he stirs and will change his diaper and try to get him back to sleep. Sometimes the nurses wake him to do his vitals and then leave me to comfort him and try to get him back to sleep....most nights are difficult....how do you comfort a hungry baby without food?

I try to be positive and strong, but it's so hard to do. I cry a lot. We've been living at the hospital for almost a month now and everyday starts out with a great plan and then things don't work out the way they are supposed to. I feel so selfish feeling sorry for myself when our brave little guy lies in his hospital bed next to me fighting off every nurse and doctor that comes near him.

To the parents reading this....the next time your little one makes you mad, take a breath and give them a hug. Be thankful that you can have a child and be thankful that they are home with you. We are thankful to be blessed with the bravest little guy, who even after being in pain will look at us and smile.