Thursday, November 25, 2010

I am thankful for traches

For much of the past 5 months I have felt like Maaike's trach was my enemy. Such a small thing has changed our lives so drastically. The plan was always that Maakie and I would fly back to China to Sid and the kids until the trach came into play. It was our pediatrician in China that told us not to bring her back. "They (doctors in China) have maybe seen one or two traches in little kids before, if ever. Its just too risky. If anything went wrong..." And so we sold and packed up everything we owned... again. There are days when I look at sweet Maaike and pray that we made the right decision. Sometimes I still can't believe that we let them do this to our little girl, something so barbaric. But then I think back on the day when I went to the hospital to consult on Maaike's sleep study results. "Only 10% of her air way is usable...she is working so hard to breath you'll be looking at heart failure...its really the only option we have left..." That was a bad day.
But now, almost five months out from her surgery, I can see her, just Maaike, no trach, when I look at her. I am enjoying this baby stage like I never did before. Maybe its because we are forced to be home so I have to/get to take the time to enjoy her. Maybe its because the possibility of losing her seemed much more real with her. Maybe its because her beautiful fuchsia lip makes her smile pop out that much more. Or maybe its a gift for moms with babies who have special needs. No matter. I am loving being a mom more than ever and if its a trach we need to have Maaike here with us then a trach we will have. I am so thankful for traches.

6 month stats:
13.9 lbs (16th percentile! up from the 6th)
27.2 inches (95th percentile! up from 93rd)

Sunday, November 7, 2010

Star of the Week

As part of Coy's kindergarten class each child gets to take a turn being the "Star of the Week." The parents get to make a poster all about their child and then come in at the end of class to brag about how wonderful their kid is and what kind of stuff they like and then share their child's favorite treat with everyone.

We took a few moments this morning to talk about what Coy would like on her poster and what her current favorites are. I knew most the of the responses: favorite food = my homemade chicken pot pie, favorite book= "What! Cried Grannie", favorite candy = gummies. But there were a few surprises too, like her favorite color is now light grey. Okay. Top of my list too.

Bragging on Coy is easy these days. She still has her freak out moments for sure, but she has caught me by surprise in the best ways lately. Most notably, the day I didn't wake up.

Getting enough sleep is a daily challenge. Between middle of the night feedings, to changing the pulse-ox probe every four hours, to the oxygen saturation alarm sounding, I average about 6 hours of sleep a night. I do pretty good most days, but one afternoon it all caught up to me.

After dropping Coy off at school and putting Maaike down for a nap I wanted to give Kees a little one on one time. We curled up in a chair with a few books to read and set an alarm on my phone to remind me when to leave to pick up Coy. I can't remember how many books we read or if I even finished one before I fell asleep. Kees stayed right there in the chair with me and looked at the pictures while I snoozed sitting upright.

I don't know what finally woke me, but as my eyes went to the bird clock I went into simultaneous shock and panic. It was 4:15pm! I was suppose to pick up Coy from school at 3:30, 45 minutes ago! I ran first to check on Maaike, fearing I had slept through her oxygen alarm, but thankfully she was still sound asleep and breathing well. I then grabbed my phone. not only had I slept through the alarm I set, but also through a call from the school asking me to come pick Coy up, and a call from my husband after the school had called him. We only have one car so he was powerless to help.

I tried first to call the school, but the line went automatically to the after hours voice mail. Then I called my mother-in-law. No answer. My sister-in-law. No answer. My brother-in-law. No answer. Sid. Answered and he had gotten a hold of my father-in-law. Knock on the door. Royce, my father-in-law, he would leave to get her straightaway. I was still in a groggy daze of shock, but went in to unhook Maaike from all her machines who was now stirring. Kees, Maaike, and I went out on the front lawn to wait.

I imagined the reaction she would have getting out of the carin tears, "Mom! I was the last one! Why did you forget me!?! Why didn't you come get me?" I felt terrible as it was. Over whelmed with Maaike's care I however determined to make sure that Coy and Kees still felt as loved and cared for as ever. I hated to think of a little kindergartener waiting alone in the office for 45 minutes. Just a few weeks before Coy had offered up this prayer at dinner, "...and please bless that Mom and Dad will care for me and Kees as much as they do Maaike." A piercing arrow straight to the heart.

When Royce's car pulled up my heart was racing and I started crying. Before she could say anything I started to tell her how sorry I was. But she was not crying. In fact, Coy looked just fine. She only stopped for a moment to say, "It's okay mom" and gave me a quick hug before she ran off to play.

I stood there crying for a minute, letting myself purge it out, but then took a seat with Maaike as we watched Coy and Kees play on their bikes. It was a beautiful moment, the sun was shining through the giant maple tree, there was a slight crispness to the early autumn air, and I was in awe of my five year old's resilience.