4/11/08

I am officially off of TPN! If I continue to tolerate my feeds I will not have to go back on it. I am up to 19 cc's of breast milk per hour. Tomorrow they will start to condense my feedings. I may be given 60 cc's over 2 1/2 hours. Then I wouldn't get fed for half an hour. I will start getting enzymes in my breast milk on Monday. These enzymes will help me break down the fats, proteins, and carbohydrates in my food. Most people with CF need these enzymes to help them digest their food. Mucus inhibits the pancreas natural production of the enzymes.

Love, Ben

4/10/08

I just woke up a half hour ago. I slept through most of the night. Mom just called to check on me and I am being rocked by the nurse. The nurse calls me her cuddle bug. I was weighed last night and I am now 6 pounds! My breast milk went up to 15.6 cc's per hour. I am still on continuous drip through the tube in my nose. My TPN is down to 3.3 cc's per hour. I am not sure I like it in my new pod. I don't have my own room anymore and it sure is loud in here. The little preemie girl next to me makes her monitor beep all the time. Yesterday my mom came back from lunch with my Great Grandpa and Grandma Robke and I was crying. I had pulled the tube out of my nose. It was hard for Mom and my great grandparents to watch the nurse put it back in. His first try did not work. He had the tube in, but it had folded inside. I think my nasal passage and throat got pretty scratched up. I was crying like my mom had never heard before. Mom was very upset and told the nurse to add some ointment onto the tube like she has seen them do before. He did and it slide in much easier. I also got some sugar water to help calm me down.

I am hoping for an increase in my feeds again today. I'll keep you posted.

Love, Ben

4/8/08

I am four weeks and one day old today. My feedings went up to 14.6 cc's per hour. I now weigh 5lbs 15oz. Almost to the 6 pound mark! I am going to be moved from my very own room to a big hostel type room with other babies tonight. This means I am doing better, so they feel I am ok to moving to the big pod. Hopefully one step closer to making my way out of here. The doctors said I should be completely off of TPN in the next 3-4 days if I can tolerate my increases in breast milk throughout the week.

Mom and Dad gave me a bath last night and I loved it. No sponge bath this time. I actually got to sit in the warm water and relax. I just had to leave my PICC line arm out of the water, but the nurse held it for me.

Love, Ben

4/6/08

I am up to 12 cc's of breast milk per hour today! I am now weigh a whopping 5lbs 13 oz! My TPN is down to 6.6 cc's per hour. Last night I was allowed to do a non-nutritive feed with my mom (she pumps and then I can try and feed). I latched on like a pro. I root all the time, so the nurses said I wouldn't have a problem. The nurses love me. My dad walked in the room yesterday and they were holding me and taking pictures of me with the Polaroid camera. I am a ladies man.

~Ben

4/5/08

Yesterday my mom finally got to give me a bath! My mom massaged oil into my scalp with my baby brush to help with my cradle cap. I loved my massage. Once I was done with my bath my mom massaged lotion into my feet. I was very relaxed after that. She told me she pays a lot to have that kind of treatment for herself. After my bath, I took a snooze from 1pm-3pm, with my mom. I am up to 11 cc's of breast milk. It is still on continuous drip into my stomach from the tube in my nose. In the next few weeks they should try and start volume feeding. I am up to 5lbs 12oz. My second genetic test came back and they have still not found my second mutation. The test looked for 97 mutations. There are over 1,500 mutations. When I get to U of M they will do additional genetic tests to find my other mutation.

Love, Ben

4/3/08

My feeds have increased to 9 cc's per hour. I am getting more breast milk than TPN. I have not spit up in over a day and I am continuing to poop. I toot pretty loud too. Things are progressing very well.

My Great Strides Team is doing an amazing job. Everyone's generosity towards finding a cure is overwhelming. Keep up the good work.

Goodnight, Ben

4/2/08

Yesterday the doctors increased my feeds to 6 cc's per hour. I now weigh 5lbs 8 ounces. One ounce above my birth weight! My mom was able to change three of my poopy diapers yesterday! I usually spit up a bit when I am trying to poop. The doctors said that can be attributed to the meconium ileus I was born with. My body is just trying to figure out how to work.

Mom and Dad got in touch with Dr. Nasr from U of M and they want to be involved with my treatment now. Mom and Dad have requested that my current doctors coordinate my current care with the CF center at U of M. They would begin certain treatments for my CF now.

Thank you to all who have contributed to the Cystic Fibrosis Foundation and who have joined my Great Strides Team! My parents are touched by every one's support. Your generosity brings us closer to a cure.

Love, Ben