It all started in November....

The craziness, that is. You see, we couldn't leave for New York to celebrate Thanksgiving until the last pie was out the door. I'm the fundraising chairperson for JWCL, a local women's club. We had a pie fundraiser to raise money for the Virginia Tech Ambulance Fund. (For more info on the fundraiser, click here.)

My friend and fellow board-member, Kathy, and I headed out to HillHigh Apple Pie to pick up the pies, all 248 of them:



Then Nick and I worked to make sense of it all:



Lila helped too:



And soon we were ready.



The pie distribution went fairly well, and the last pie was gone around 6:00 p.m. So we started our journey to New York around 7:00 pm, thinking that Lila would sleep most of the way. We took a detour to pick Justin up from school in Pennsylvania. We got stuck in construction traffic on the Jersey turnpike, and finally arrived at Nick's parents at 2:15 a.m. Lila hadn't slept a wink. Seems the lights from the other cars and construction work had over-stimulated her. She finally went to sleep at 4:29 a.m. YIKES!

We spent Thanksgiving at Nick's sister's house in New Jersey and had a great time.



On the way home we took a break and ate dinner at Justin's apartment. Lila loved it.



Gangsta



After our Thanksgiving travel, the holiday festivities were in full gear.

We attended the local Down Syndrome holiday party~ hanging out with old friends, and meeting new ones. We also attended 3 other parties that weekend. A bit much? Perhaps.



Lila making her grand entrance into the party. LOL



The blizzard of 2009 flocked the wreath on our front door perfectly.



Our friends invited us to a snow party so we walked over. Their house is about 4 blocks away. We had so much fun! It was Lila's first time to ride in a sled. She loved it. Except when she landed face-first in the snow. Twice. Daddy carried her on the way home.




We waited for Justin to arrive home for winter break and trimmed the tree as a family. Justin was trying to teach Lila to put the ornaments on the tree, not take them off. She didn't get it.



We headed out to New York for Christmas, this time at a more sensible hour.

On Christmas Eve day, we had lunch with our friends Margaret, Sean and Brendan. It was a bittersweet time as there was someone missing from the gathering. Dave. Nick's friend. Margaret's husband. Sean & Brendan's dad. He passed away 3 years ago after losing his fight with pancreatic cancer. Spending Christmas Eve lunch with their family has been one of Nick's traditions for a very long time. It was so nice to be able to start it up again.

Lila, hanging out with Sean.



And then the fun began.

Lila with Daddy at dinner



With the rest of the crazies~ having appetizers~



Nick's parents watching and waiting on the pasta water to boil. (You know what they say about that.)



Nick's nephew, Ryan, passed out lottery tickets to pass the time.



At last! The delicious food was ready. Nicole and Emily dig into the Chicken Parmesan.



After dinner, the kids played dress-up while the food was put away and dishes were done.



At the family gift exchange, Lila got a Sit-n-Spin from Uncle Peter and Aunt Laurie. Oh, wait! Lila doesn't participate in the gift exchange! Everyone buys Lila a gift. : )



On Christmas morning, Lila was Santa's Helper. As you can see, it is hard work.





Daddy and Lila with her gifts



For dinner on Christmas Day, we head over to Aunt Barbara and Uncle Jimmy's house. We always have a great time over there!

Tif & Lila are ready to go! They're probably waiting on me. LOL. No, seriously.



Lila, Mema and James



Lila and Mema with the babydoll and outfit hand-made by Aunt Barbara. It was so thoughtful, it made me cry. (Doesn't take much, though, does it?)



Lila and James were watching a movie in the guest bedroom. Nick kept making comments about James putting the moves on Lila. Actually, it was Lila that kept trying to hug him!



After a lovely time in New York, we headed back to Virginia. The weather was so nice that we took Lila to the park after church.





Two days later, in the middle of the night, Lila started coughing. Barking. Like a seal. It wasn't pretty. I took her to the doctor and she was diagnosed with croup and an ear infection. We were sent home with 2 different types of breathing treatments and a prescription for Augmentin. Thankfully, she started sounding and feeling better within 24 hours.


Then it was New Year's Eve and we were going to a friend's party. Just as we were about to leave for the party we noticed that Lila's hands and feet had a purple tint to them. I called our pediatrician, and after talking for a while she told me that it was ok to go ahead with our plans. Lila wasn't showing any signs of breathing issues, and seemed fine. She felt that Lila had gotten a chill and the core of her body was tense, causing her feet and hands to turn purple. We also discussed that sometimes kids with Down Syndrome have occasional circulatory issues. It sounded logical to me, and we went to the party.

We were staying overnight, so we put Lila to bed around 9:00. She woke up when we came into the room around 2:00 a.m. and we were awake with her until 5:00 a.m. (At least that's what I remember. Sleep deprivation is an ugly thing.)

The next morning, Lila was fine. She ate breakfast,played and had a great time. We didn't leave their house until early afternoon! (Sorry about that, it was just so relaxed we lost track of time.)

Fast forward to that evening. We had dinner together as a family, put Lila to bed around 8:30, nothing was out of the ordinary. At 10:30, Nick went upstairs to check on her. And promptly came back downstairs with a worried look on his face. I went upstairs with him, felt her breathing, and called the pediatrician.

Her breathing was so shallow. Labored. I could see her little body struggling to breathe. And still she slept. The doctor told us to give her another type of breathing treatment, Xopenex, that we always have on hand for her just in case. We were thankful to have it, but it didn't matter. It didn't help. Within 30 minutes we were in the car on the way to the emergency room.

The rest of the night was a blur. Within 3 minutes of walking into the hospital they were checking Lila's oxygen levels. 77.

77? Really? I looked at the nurse, then back at the monitor. It was then that she realized we knew how to read the monitor. Compliments of our 7 week NICU stay.

"77 is not a true read", she said. "Give me a minute." She made an adjustment and the reading went to 83. She went to the phone. "I have a patient in respiratory distress. I'm bringing her back."

And back we went. Back to oxygen, blood draws, screaming, fighting. Lila was awake now! She was scared. We were worried. Off to the x-ray room. "No, mom, you don't have to move, we're taking the whole bed down there." Seriously? I have to pee. In a big way.

Lila saying "Cheese" to the x-ray technician. Back to the ER. Fluid on the lungs, she still needs oxygen. We need to admit her. Here comes the IV. Poor little thing. So sick, and doesn't understand what's going on.

Here she is sleeping with her little "kitty cat nose" oxygen mask on.



The next day, Lila felt very sick and didn't have much energy. We chilled out in the room watching movies and reading books. She kept saying, "I sick, mama. I sick."



That night we took her for a walk around the peds unit. She was happy to be out of the hospital room for a little while. (To be honest, so was I. I'm not good at being cooped up. LOL)



Nick went home to get some sleep and I stayed with Lila. She had a really rough time that night. The nurses were in the room more often than they were out for about 3 hours. Lila's oxygen levels kept dropping. They kept raising her oxygen. Repeat. It was like she just couldn't get enough oxygen. When she was awake, she was coughing. A lot. When she would fall asleep, her oxygen levels would drop. I was in and out of sleep during those hours~ mostly staying in my bed as there was nothing I could do but wait and pray.

I walked over and stood beside one of the nurses and she said, "We are taught to treat the patient, not the numbers on the monitor. We have been watching her and even though her oxygen levels are dropping on the monitor, she isn't laboring to breathe."

I've heard that before. In the NICU. I knew that she was right but was still worried about the numbers on the monitor. They removed the "kitty cat" nose and fit her with oxygen prongs. This seemed to help immensely, and Lila finally fell asleep and stayed asleep for the next 5 hours. Thankfully, so did I.

The next day we had the same nurse as the day before, and she was wonderful. Before she had kids she was a nurse at Children's Hospital in DC. She told us that she had cared for a couple of kids with Down Syndrome that had low oxygen levels when they were sleeping and that was just their "norm". She felt like that might be the case with Lila, as Lila's levels only dropped when she fell asleep and even when they were sitting between 89 and 92 she still wasn't laboring to breathe. She said that she would talk to the doctor about it.

When the doctor did her rounds, she gave us the choice to stay or go home. Everything they were doing at the hospital could be done at home, minus the IV and oxygen monitor, which were a constant irritation to Lila. She left us alone to talk.

Even though we were a little nervous, we both felt like it would be best for Lila to take her home. And we did.

Here's Lila, glad to be home but still not feeling well.



Here she is, hugging Justin. (As a side note, it took a lot of conditioner to get that bird's nest out of her hair.)



Lila went for a checkup the next day and they could still hear "crackling" when they listened to her breathing. She missed school and therapies for the entire week. She was on steroids for 4 more days, which made life at home an adventure. Steroids don't exactly bring out the best in most people.

She has been off of the the steroids for 2 days and she is almost back to her normal, happy self. We are so thankful that she is home, safe and sound. We are so grateful for the prayers of our families and friends.

It seems we may have stretched her a bit too far this holiday season. She probably would not have ended up in the hospital if we had been more careful. We will be scaling things back next year.

Living and learning~

Linda

P.S. I cannot stand reading blog posts that are this long. Sorry, but once I got started I needed to finish all in one post. I'll try not to let it happen again.