7 wks old

Dear Griffin,

You have a had a rough last week. On Wednesday 2.13, you were diagnosed with severe RSV. Dr Herbert wanted to put you in the hospital again, but I reminded her that you were scheduled to see Dr Koch at OHSU on Friday 2.15. Reluctantly she agreed to give me a nebulizer machine and give you breathing treatments. You were seen by her that night and the following morning to make sure you hadn't worsened. Luckily you never did and we were able to go to the much-anticipated trip to OHSU.

Dr Koch was very nice - a spitting image of Dustin Hoffman. The day went off without a hitch. We had gone up to Portland the night before and ate dinner with Jenn and her friend, Jason. We spent the night at The Marriott downtown. Grandma Bauer was with us, too.

Dr Koch basically said that MRIs done on babies that young are very unreliable when it comes to diagnosing something that severe. He was not concerned with the findings found on the MRI done when you were in the NICU. He said you looked great developmentally and that he wasn't concerned that you'd have issues as you got older. He said we could start tapering you off of the phenobarbital starting the 1st week of March, but it's a 6wk ordeal. By April 21 you will be off Phenobarbital. You had another EEG on Friday and we'll come back in May to do another MRI, then see Dr Koch again with you off of Phenobarital.

You're starting to cooo and talk to mom. You smile when I smile at you. You sleep about 5hrs at a time at night, and are starting to get your nights and says back to normal. You don't like sleeping in your crib during the day, but rather prefer being snuggled by us, or in our down pillows. At night you do rather well in your crib.

We love you very much and are amazed everyday. We know in our hearts you are pefect and you always will be.

Love,
Momma

5 weeks

You've been doing so well!! Maysen brought home a cold that everyone got - including you. It's so hard listening to phlegm gurgle in your throat/chest and not cough it up for you. You don't understand the concept of "coughing" yet, so you gurgle. We took you to the doctor earlier this week and they suctioned you out really well. They noted you were still wheezing a bit but the next day you were doing really well. You now weigh 9lb 10oz.

There has been another twist in the case - the University of California read your MRI as something different than everyone else (periventricular leukomalacia). At this point it's hard to speculate anymore which is right and I just put it in God's hands that OHSU will have the answers we need to hear.

They increased your phenobarbital dose and I can completely tell when they increase it - as you are more lethargic. Hopefully you will be off of this soon. I know it's for your own good - as it is protecting your brain from any seizures.

You're sleeping pretty good now. You sleep in your crib and wake up at about 2am and 5am to eat. You like to sleep more on your left side and it seems to be making your head seem flat on that side! You've grown out of your "newborn" outfits and are now in your 0-3 and fitting pretty well.

You pucker your lips just like your brother used to do at your age. Your nose is so small that you flair your nostrils and pucker your lips. It's so cute!

I love you so much - and this illness weighs heavy on my heart. I rack my brain hoping that I did nothing to cause this. Everyone says there's nothing anyone could have done and I know you're going to grow up perfect and excell in every way. I just know it. But I hate that you had such a rough start. Just know we are doing everything in our power to keep you well.

Love,

Momma