A Long Overdue Update - 4.27.09

Good Evening Everyone... My sincerest apologies for not posting in over a week. My energy to post daily hit a wall a little while back and I'm newly committed to getting back on the horse again. It's just been extremely taxing emotionally and physicallyon Michelle and I and sometimes we just collapse into a heap when we get home and blogging is the furthest thing from our minds.

Where do I begin?

Earlier last week on April 22 Christian had what Michelle and I feel was probably his worst day thus far. His stats had dropped significantly on this day to the point where he was saturated at 100% oxygen and could not go any higher. He normally sits in a range between 40-60%. After his PDA ligation he had been doing so well- the ventilator settings were coming down steadily, his gases were good, his feedings were back up, and then..... he took a very sharp downturn. You have to understand that Christian has an extremely bad case of pulmonary interstitial emphysema in his lungs, which is basically a fancy way of saying that he has a bunch of cysts all over his lungs that are stopping him from being able to compress and decompress his lungs fully like a healthy human being. Michelle and I stayed at the hospital for over 7 hours and would have stayed longer had we not been kicked out nor had we been drooling all over ourselves from exhaustion. I've never seen Christian so lethargic and lacking movement. He usually is wiggling all over the place. He had lost weight, his stats were bad, he wasn't moving, his oxygen levels were alarmingly high and the ventilator settings had to be bumped all the way up, eliminating all of the progress he had made following his surgery. Michelle and I were a wreck.

Fast forward to today, and Christian looks much, much different. It's amazing what 5 days can do. Chrsitian is back down to about 60% oxygen saturation at my last call to the NICU about 30 minutes ago. His night-time primary nurse, Rainna, is watching after him tonight. I always feel really comfortable when Christian is in her hands. His primary nurse for the daytime, Auntie Erika was watching him today. She is the sweetest nurse EVER! We love her. I think it is important to have a primary nurse that you can relate to and grow to love as much as we'vegrown to love her. Christian loves her too, and it makes you feel that extra little peace ofmind when you know she is taking care of him. She even went so far as to buy us this adorable littlemonkey frame when she wasout and about on her day off thinking about him. Too cute. We definitely hope to have Auntie Erika in our lives for many years to come.

We spoke with Dr. Ginsberg today and he informed us that the pulmonary emphysema is starting to improve from his latest chest x-ray. Christian gets an x-ray every morning to see what's going on in his little lungs. It seems the right side of his lungs have shown significant improvement, though the left side of his lungs are stillvery much suffering from the disease. Chrsitian is also suffering from a loss of blood platelets and adepletion of white blood cells,so the doctor has put him on three courses of antibiotics to hopefully correct that. Christian also had a blood transfusion yesterday and today to compensate for the lack of platelets.

His feeding are going great! He continues to be on full feedings without any supplemental fluids, which is outstanding. He is receiving 5.2 mL per hour of milk, which equated to about4.5 ounces daily. He is receiving a calorie fortifier which should help him to grow more quickly. He is up to a whopping 1 pound 14 ounces now, and Michelle and I are crossing our fingers for 2 pounds this week! He is starting to really fill out his little body and to get bigger. The doctor says his ability to tolerate feedings is going to be his saving grace.

I don't think I've left anything out. We'll be back tomorrow with some hopefully good news to share with you all. Until then, thank you for your prayers, thoughts and warm wishes, and God bless you all.

With Love,

Jason & Michelle