Friday, August 6, 2010

Happy 7 Months.

Dear Patrick,

You are seven months old today. And I am amazed - awestruck - by you and all you have accomplished in your seven long months.

Seven months ago I never imagined we'd get here. Yet, here we are.

Seven months ago I looked at you, studied you and wondered how you would ever, could ever, pull yourself out of the turmoil you arrived with. It seemed insurmountable. Oh, how I longed to hold you, to take it all away.

Six months ago I looked at you, surprised that you had made it to the One Month mark. It seemed like I'd been given a gift. It was miraculous, and yet you were still so critically ill. Around this time, your kidney function was improving and you were beginning to lose significant amounts of fluid, which helped your respiratory status. But then you developed a blood clot in your liver, and your bilirubin levels climbed higher than they had ever seen before. Doctors talked to us about you possibly needing a total blood transfusion (exchange transfusion) to protect your brain. It would have been so risky for any baby, but for you, even moreso given your unusal circulation and the vascular mass in your neck. It was so scary. Your skin was nearly black from the three weeks of 24 hour phototherapy, and the high bilirubin. Yet, somehow, after weeks of phototherapy, your bilirubin started to creep down.


Five months ago we were faced with the difficult decision to treat you with radiation. The youngest person to be treated with radiation at Yale, you were barely two months old. We met the most kind, wonderful, compassionate people at the Smilow Cancer Center. Dr. Kenneth Roberts is etched forever in my mind.


Four months ago, I started to see the light at the end of the tunnel. You were off the ventilator, you were just using a small amount of oxygen through the nasal cannula. You were finally shedding equipment and tubes and wires and ivs. It was actually becoming harder for me to leave you every afternoon because you seemed less 'sick'.


Three months ago you came home from the hospital. Greeted at home by your grandparents, aunts, uncles, friends. Your faithful visitors who came to see you at the hospital weekly, or even more frequently. Your arrival home was exciting and scary all at once. It was the moment we'd been waiting for -- since January. And here it was, May 5. You were still small -- only 11 pounds. With your oxygen cannula, feeding tube, all of this new equipment. And medication galore. I had no idea how we were ever going to manage all this, but we did. We still are.


Two months ago, you were already making strides and improvements. No longer requiring the oxygen. Gaining some weight, although not quite the amount your doctor wanted you to, but you were moving in the right direction. You were, and still are, receiving twice a week visits from a nurse, two home visits per week from therapists (physical and occupational), many doctors appointments.


Last month, you actually went on your first vacation. Can you believe it? We went to Cape Cod, of course. We love Hyannisport, and you will too. We go every summer, no matter what. We eat lobster, and chowder and ice cream and go to the beach and play scrabble and watch movies. And we do it with Grandma and Papa, Aunt Erin and Uncle Greg and Lauren, and Aunt Lexi. Its one of the best weeks of our year.

July ~ Cape Cod, with Grandma

And so today, once again, I'm reminded of what a miracle you are, Patrick. Just look at your progress. My faith is renewed. You have walked a long journey already. I pray that it only gets better from here, although I can't help but worry. I worry about your next platelet count. I worry that your physical therapy does the trick and you get 'caught up'. I worry. I do.

But there's something special about you Little Lovey. Something really special. And that makes some of the worry melt away.

Happy 7 months Little One. I love you more every day.





  1. beautiful!
    i need to figure out how to "print" the blog. im thinking its a great amazing way to document life. its like the "new baby book".

  2. So far you have come. So much farther you have to travel. You are clearly stronger than any of us, who have had the special honor to have met you along this life journey, could ever have imagined. Keep up the great work, Baby Patrick. This time next year, I'm taking you and Wookie for some DQ on a hot summer evening!!

    Happy Birthday dear Patrick! xoxo

  3. He's come so far Rachel - he gets cuter and cuter everyday!