Let it snow...

Well, we will be snowed in for a few days...again, so I figured I'd update the blog rather than clean up all of Liam's toys from today's adventures. We have started off the New Year with some follow ups with our specialists. We have half a dozen doctors in the first two months, not including normal pediatrician appointments.

So little man is no longer little. Just under 25 lbs now, he is talking all day long, he understands so many words and what we're saying to him and he has a typical up to no good little boy personality. When he is reaching for something, you say No Liam, he looks, smiles and continues to look at you as he reaches. And you can't help but laugh which isn't helping I'm sure but its adorable. We started Early Intervention and we will focus on gross motor where his delays really are- being able to transition into sitting, standing, crawling, etc. I also do a group class and private therapy, and not including playdates or Mommy and Me classes. Hopefully, this will show a lot of progress. And yes, Liam has a more exciting life than we do. Combined.

On the health front, we had another hearing test done this morning. His left ear canal had been so small in the past the diagnostic tests just couldn't get a reading. He did pass his newborn and because he communicates pretty well so while we weren't that worried, it was a nice relief to finally get a real reading today. His hearing is in the normal range. It took three of us to get the test done- I had to hold him against me and put his arms down so he couldn't grab the wires, or shake his head. Oh, or make any noise. Two doctors- one blew bubbles and one played peekaboo. And that was the recipe to finally get the test done correctly- four visits later. Phew.

The most exciting news for us was his recent immunology visit. The doctor thought he looked wonderful and he really is the picture of health- pink cheeks, uh chubby.., happy, etc. They ran blood tests to check all of his levels in the immune system, which we need to do every 3 months. Every number improved! And the b cells, who actually do all the work, they doubled- which is amazing. He was at 200 in August, 300 in November and now just over 600. Granted the low end of normal is 1200 but we're getting there..it just gives me that image of Liam being able to actually go to pre school at some point, not taking so many antibiotics, finally getting vaccinated- it brings us closer to normalcy. I never would have thought a year later we'd still be fighting complications, particularly when he looks so good, you wouldn't think he has little to no immune system. We are extremely thankful and grateful every day.

This day last year we were actually getting some big news- it had been ten days of Liam going backwards, breathing tubes, talks of preparing ourselves, two different sets of chest tubes and Liam in a constant state of induced paralysis. I hadn't held him. I could only touch his forehead, he had an IV in every leg and arm. He was finally stable enough to get a cardiac catheter to take a look at the heart because the echo showed no issues with the repair. They said it would be 4 hours. 45 minutes later, the nurse came very quickly and asked us to go into the consult room. I feared the worst. I think we all did- it was Alex, my father and I. Dr. Bird and Dr. Andy, I really don't remember his last name or if ever told me it, began to explain that when the dye they inserted into him was pumped, both chambers lit up and the 1 mm residual VSD around the patch blew up to almost 6 mm. I immediately realized it.

I can remember just sitting Indian style with my hand in my heads, looking up quickly and looking Dr. Bird in the eye and saying- You have to go back in, don't you? And seeing the concern and compassion in his face as he said yes. At that point, they didn't know if they were going to go in then or wait. Dr. Spray, his surgeon was on travel and he actually called, was able to review the catheter video and said he wanted to do the surgery himself. They scheduled it for first thing Wednesday morning. But they told us in no uncertain terms, if his status changes, the on call surgeon would go in immediately with their team.

We felt relief, it was a mixed emotion knowing he had to go back under and have the same dangerous surgery, by pass machines but we finally knew what was happening inside of his body and there was a way to fix it. His heart was mixing bloods and his lungs were getting 4 times the amount of blood it was supposed to be handling. And here we are today, a year later, fighting the complication of having all that fluid which drained his immune system out. Its so ironic. I was so worried about the surgeries when it was the recovery that mattered the most for Liam.

Ah anyway, sentimental feelings for the little guy at this time of year will always remain. I prayed a lot- mostly to my Aunt Cindy because at that point, I questioned God a lot and wasn't really all that happy with things. She passed away Jan 21, 2007, at a young age, leaving behind a beautiful family because of breast cancer. I talked to her a lot, outloud so I looked crazy at Liam's bedside probably but she was someone who taught me strength and a lot of perseverance. This time of year is always going to be tough but I'm convinced Cindy was with Liam the entire time during his fight and she gave me back my son. January is always going to be bittersweet- I was given my son back but I also lost someone so important to me. All this snow doesn't help either but I do remember at the end of her funeral service, it had begun to snow and that's what gets me through a winter like this, she loved to ski and tried to teach me.

One Year Annivesary

One year ago yesterday, Liam and I took our first helicopter ride, from Virginia to Philly, which in retrospect, is frightening but kind of neat. We had spent almost 10 hours in our local emergency room and then once the crew arrived, they took over and I finally felt some relief. The pilot was a veteran, much older and could have been in the movie Good Morning Vietnam. I held onto Patton, Liam's teddy bear and he was strapped in a board. He was given sedation but never slept- a first for the crew in something like 600 flights. This is also true for napping..he isn't a big sleeper. The flight crew actually stopped to see us a few times after that night, which really was thoughtful, despite all the kids they work with, it was nice to know they thought of us. We flew into center city Philly about 11:30pm and landed quickly. I walked with Liam down to the 6th floor and met Dr. Bird, who would be a familiar face and a comfort to me over the next two months. He got me acclimated after examining Liam, worked him into the surgery schedule and walked us through what would happen. As he was doing this, Alex, Mom and Dad were labeling all the frozen breast milk that Alex drove up. Kind of weird....but it had to be done.

One year ago today, at about 9:30 am, I handed Liam over to the doctors outside the OR and said a quick prayer. I let everyone else, Mom, Dad and Alex, give him a kiss first and then I gave him a hug and kiss. Letting go was hard. In fact, the nurse had to pull him a little. He was supposed to be in his crib but I asked to carry him down the long hallways. It was a bittersweet moment, you know its best for him but you're frightened that you will never see him alive again. Open heart surgery is risky- Dr. Spray literally takes his heart out, it stops beating, he is iced down- I can't even think about all the details, which yes, I tried to read about but could never get through it. Our nurse made all the difference with our nerves, Mary Katherine. She kept us calm, gave us constant updates and a hug when we were told he was done within an hour, 3 hours less than they thought it would take. When Dr. Spray met with us after the surgery, I remember Mom telling him that she loved him, which broke the tension and we all laughed. Little did we know what was in store for us, but as bad of a 24 hours it was, it was good too. He was "fixed". And with Liam officially sedated and who would be sleeping for 12 more hours, I had a huge margarita and finally slept for the first time in 2 days.

Today, Liam and I went down to CHOP for a follow up immunology appointment. I guess I didn't think we would still be doing such frequent appointments, be on meds, or having to worry about things but honestly, its been an amazing year. There were a few parents who didn't bring their babies home, who lost them or are still waiting for repairs/transplants. We have to wait for the blood work results from today's visit, it will be about 10 days for all of it. The doctor is hopeful that he has improved since he did get through his fever hospitalization in December so quickly. We certainly hope so too!

We are beyond lucky and grateful for this little boy, because he definitely isn't a baby anymore at 24.6 lbs, who standing is past my knees and today said Bye for the first time! I couldn't have imaginied at this point last year being so damn happy, but we are..and we love this journey.