$&#@!!!!!

Back at the hospital. Ben just underwent surgery again on his small intestine. We'll keep everyone posted.

Chris and Kati

Home Run!

It is official! I am going home today! I am so excited to see the world. Mom and Dad are so ecstatic to put me in my car seat for that first ride home. They are ready to give up the studio apartment at Beaumont. We want to thank all of the great nurses and doctors that have watched over me the past 6 1/2 weeks. They have really done an outstanding job caring for me. Mom said she is nervous because now it will just be her and Dad taking care of me. Her full time "nannies" won't be around at night. Mom said it is a bittersweet moment because this has been our life for the past month and a half, but she is ok with saying goodbye to it. Dad, Mom, and I want to thank all of our family, friends, and new people that have walked into our lives for their awesome support. We are so grateful to have you all in our lives.

I will be going to U of M May 1st for my first meeting with Dr. Nasr.

It's a beautiful day, Ben

Home on the Horizion

The gavage tube and PICC Line have been removed! I am only hooked up to the heart monitor that all babies in the NICU are connected to for safety reasons. All of my feedings have been changed to bottle and breast. It is looking like I may be home by the weekend if my feeds continue to go well. Mom and Dad were so ecstatic to hear this. My bilirubin count is high, so I had to have an ultrasound done yesterday. The doctors said my liver size looks normal, but they were not able to see everything they needed to see. They may do another test, but haven't decided on the next step. I am on Phenobarbital to help lower my bili count. I am also on an iron supplement because my iron is low.

I can't wait to breathe fresh air for the first time and go on my first car ride.

Smiles, Ben

4/21/08

My feeds have gone up to 57 cc's. The feedings have changed from continuous to bolus feeds. A syringe is connected to the tube in my nose and it is held above my head. With the force of gravity it goes into my stomach. Hopefully in the next few days they will just be bottle feeding me the breast milk. I am ready to have the tube removed from my nose. The nurses said the bolus and bottle feeds both take about the same time for me to eat. This doesn't make much sense to Mom (or the nurses), so Mom asked the doctors about it. They said they want to make sure I am not "dumping" my milk before going to bottle. They said if I tolerate this well we should be going to bottle very soon. I got to breast feed again and did very well. We monitor my intake by weighing me on a precise scale before and after I breast feed. I have a really bad diaper rash from the enzymes. My bottom skin was actually bleeding. The nurses have made a mix of desitin and this pink calamine like powder that they coat on my skin. It seems to be helping a bit.

Mom, Dad, and I had a nice surprise visit from Cameron's mom, Ms. Debi, today. Cameron is my new friend that has CF too. They were very pleased to have met Ms. Debi. She has provided a lot of good advice and support.

Love, Ben

4/18/08

Today my feedings were increased to 55 cc's for one hour and then two hours off. I am getting fed 8 times a day for a total of 440 cc's or 14.6 ounces. I even got to breastfeed at 5:30pm today in combination with breast milk from a bottle. I did not get fed through my gavage tube at this feeding at all. I should be able to continue doing this for one feeding a day and eventually more if I am tolerating it well. Mom and I also did more Kangaroo Care today. It helps soothe my upset tummy. Mom asked the doctors about walking me today too. They said she could bring in my stroller and walk me down the hall. After my 5:30pm feeding Mom and Dad both held me without being connected to my monitor and they walked me around my pod. I had a great day!

Smiles, Ben

4/17/08

I started my Ultrase enzymes on April 15th. I have been taking them like a champ. I get the little enzyme beads in a tiny bit of applesauce. Mom puts them on a spoon or on her gloved finger. I then get to wash them down with 10 cc's of breast milk. I get these 30 minutes before each feeding. Mom calls it my dessert before dinner. I am now getting 48 cc's of breast milk over 1 hour then 1 1/2 hours of no feedings. The 10cc's I get with my applesauce comes out of that amount. My overall volume for the day decreased from 456cc's to 432cc's. This is is the only way to get more volume in a smaller amount of time without over loading my belly. The goal is to get me on larger volumes with longer breaks in between my meals, just like most people eat. I started getting my fat soluble vitamins (A,D,E,K) yesterday. I get them once a day. These are put in my gavage tube while eating. The color is a bright orange and it changes the color of my pee to orange.

Mom and Dad gave me a bath last night and I pee'd on them twice. Once while getting weighed and then again after I was all dressed and clean. I am just preparing them for when I go home.

Love, Ben

4/14/08

The doctors are condensing my feedings. I am getting 38cc's of breast milk (a little over an ounce) every other hour. I get a total of 15.2 ounces a day. I have lost weight the past three days. I now weigh 5 pounds 14 ounces. The doctors are deciding on the next course of action. My enzymes were supposed to be started today. They are in the pharmacy, but I have not received them yet. They will have to give them to me in tiny bit of applesauce. A one month old eating a bit of solid food!

I had a nice warm bath today and loved it! When I had my bath I was on my food break. I wasn't hooked up to the food pump and I had the monitor stickers off. Mom actually got to hold me with no tubes! We walked around after my warm bath and I was wrapped in a heated towel. It was very nice. She told me about being outside since I have never been. The sun was shining nice and bright today. I can't wait to feel the nice breezes and go for walks in my stroller.

Mom, Dad, and I are thrilled to see the donations climbing in support of a cure!

Love, Ben

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