So Big

I weigh 7 lbs 2 oz! I finally passed the 7 lb mark! My potion is working. I am so happy to be at home. I sleep very well about 4-5 hours at a time during the night. I have caught Cali in my bed a few more times...since I haven't slept in it yet :o I sleep in Mom and Dads room in my bassinet. I have slept with Mom on the couch a few times.

Love, Ben

Home!

I am at home! I am so happy to be at home with Mom and Dad and my two pesky cats. Cali was caught sleeping in my crib! I was downstairs sleeping in my pack n play. I know she wouldn't have hopped in there if had been in there sleeping. I did really well for my first night home. I only woke up to eat a few times. I am getting so big. I weighed 6lbs 14oz when I left the hospital yesterday. I am almost 7lbs! I will get weighed at the pediatricians office on Monday. I go back to see Dr. Nasr on Thursday for a follow up appointment. I think I may go for a walk tonight. It is great to be a free man.

Smiles and Giggles, Ben

6/17/08

The doctors are still trying to work on the right potion to try and get me to gain weight. I am getting 3 oz. of breast milk about every 3 hours. They have increased my enzymes to 1 1/2 capsules before each feed. I am getting 1/2 teaspoon of elecare formula added to my breast milk to add more calories. If I start to gain weight this way I will get to go home soon. I weigh 3.070 KG (6 lbs 12 oz) and I have been the same weight for the past three days. I also get the fat soluble vitamins ADEK and Iron added to my milk. I am on zantac for acid reflux. My labs came back and everything looks good. My direct bili has lowered from 5.8 to 5.4 so the phenobarbital I am taking is helping keep it down a bit. I am doing well with my breathing treatments and my chest percussion's.

Smiles, Ben

6/12/08

I had to move to a shared room a few days ago. They needed to isolate someone so I had to move. I am doing pretty well. I am up to 80 cc's every three hours just 10 cc's shy of 3 oz. I started enzymes yesterday. I get one full caspsule before every feed. Hopes are the enzymes will help me gain weight. I had a busy day yesterday and I had my circumsicion and a sweat test. I should get my results from the sweat test today. I also got my genetic test back and they found the second mutation. We already knew I had the DF508 and the other mutation is IVS7+1G>A. This is a rare mutation. I could possibly be the only person in the world with this mutation. It is unknown if I will have a milder case of CF or more severe. We are pretty sure I am pancreatic insufficient since I was born with the meconium ileus. Just to check they are doing a fecal elastase study on my poop. Being pancreatic insufficient means my pancreas doesn't produce as many of the enzymes I need to digest my food. I need an extra boost with the enzyme capsules.

Love, Ben

Food is good!

My upper GI came back and it presented no issues! This was great news and the doctor's started my feeding plan on June 4th. I am up to 45 cc's of breast milk right now! My feeds are increased by 5 cc's every other feed with a goal of 80 cc's, almost 3 oz. They are slowly lowering my TPN as my feeds increase. I had lost a bit of weight last night and I was at 6lbs 9 oz. The doctors said they expect that while they are adjusting my feeds for the next few days. Once I am on full feeds I should be gaining more. They said if I don't they will have to make adjustments. One possibility is adding human milk fortifier which would add 4 k/cals to my breast milk. That doesn't sound like much, but for babies it is a decent amount of added calories. Because of my digestive issues they want to first see if I can just gain weight on full feeds because adding things to my diet could have negative affects on me. Overall I am a happy little man in my new digs!

Smiles, Ben

My new digs

I have my own room at the hospital. I even have a TV, the first TV I have ever had at the hospital. Mom said she can finally have a taste of what is going on in the world. I watched Ellen with her yesterday. Mom cried the first night she had to leave me in that room because the doors to my room have to remain closed to prevent infections (there are all sorts of children on 5 west with upper respiratory bugs). She asked the nurses how they were going to hear me cry and they said they could put a baby monitor in my room and put the receiver outside in the hallway. I am glad she asked because I hate to be without my pacifier for too long. Dr. Nasr comes to see me almost everyday and I sure do like her. I have an upper GI scheduled for today. I will drink some barium and they will do various x-rays to see how my intestines are doing. I am off of antibiotics as of yesterday so that is good. Once the doctors get the results from the GI study they will start to increase my feeds if everything is looking good. They are going to go very slow with my feeds this time. Dr. Nasr said I better behave :)

~Ben