$&#@!!!!!

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