Sunday, December 25, 2011

Christmas Is Here!

Before I go to bed tonight I wanted to jot down some of my feelings today. I don't think today could've gone much better if I tried. I tried to savor every moment and every feeling with each new activity. We kept things super simple this year and I'm so glad we did.

Last night I made my very first holiday dinner. We skipped out on the crazy chaos of Christmas Eve with cousins to stay home and have some quality family time with the kiddos. I made turkey, mashed potatoes, spinach salad, green beans, and Adam's favorite jello pretzel salad. The girls requested candles, so I decided to go all out and did the whole table cloth, china, goblets thing. Fortunately for me, everything turned out great. I was pretty proud of myself and the kids were SOOOO excited to use all the fancy stuff. They even turned off all the lights except the ones on the Christmas tree so it could be a true 'candle-lit' dinner.

This morning I was giddy. I started listening to the kids giggle and squeal about 6:30 and try to stay quiet until 7 am. When we finally let them see what Santa brought, their reactions were priceless. Big Baby bee-lined it to the baby stroller and doll, then spent the rest of the day taking 'dollie' on walks and crashing her into things. Reagan screamed when she saw her guitar, and Tyson and Paige were jumping up and down yelling as they looked through what Santa brought. Even Molly got super excited when she saw her walker.

After that, pure pandemonium took over. For the first time ever, we had all four grandparents here and it was perfect. Big baby is the perfect age for the wonder and excitement of Christmas, especially when you add in 3 very excitable older siblings. Molly was precious. All day I just wanted to stare at her. She loved opening presents, she loved eating the presents, and she loved all the craziness around her.

If I'm being honest, I cried off and on all day long. My heart was so full and content and happy and grateful that pretty much anything set me off. It made me realize just how overwhelmingly numb I was last year. I spent all morning crying because I wasn't with Molly, then spent the afternoon crying because I was away from my other kids. My Christmas dinner was spent alone in the hospital cafeteria thinking, "Man. This is just wrong on so many levels."

Not this year. No one had the stomach flu, we were all together, and my Christmas dinner was spent with close friends and family. Things were relax and comfortable and joyful again. Molly is doing so well and our kids truly love each other. We have grown so much closer this past year and really I feel like it's been Christmas all year long for us.

While I am getting worried about Molly again and will most likely spend the day at the doctor's office getting lungs checked and seeing if we need to do a swallow study, nothing could damper the spirit and feeling of this Christmas. I really think that 20 years from now our kids will be talking about this Christmas.

So Merry Christmas to anyone still reading this little blog of mine! I hope and pray each of us find health and happiness and peace to survive it all in the upcoming year.

Monday, December 19, 2011


Today was the start of the winter holidays for both the kids and Adam. Two whole weeks of no school and no work! We had big plans for all the togetherness and Christmas-y things we would do together. Instead, I spent today running around like a chicken with my head cut off. Hopefully I got all the last minute stuff taken care of though. All that's left is mailing a few more cards and getting the presents for the NICU up to Primary Children's.

One really good thing that happened today was a session with Paul. The past few days I debated whether or not I should just cancel it because I've been feeling so good about things. This morning I realized that while I feel great overall, I've had several crying sessions lately. Last night also brought some things to light that have made me really think about relationships and how things are going with certain people.

We talked about how well Molly is doing and I let him know about the most amazing appointment ever with her GI on the 5th. We also talked about things I've become concerned with since then. She didn't do well when we took her off her reflux medication, so we will be seeing Dr. Pohl again because he has to do follow ups every six months for kids on reflux medication long term. Not a big deal, we'll just try again every six months until she's ok without it. Her reaction, or lack there of, to the blood draw is different. It made us realize that the nerve damage on the left side of her body is most likely permanent. Not insurmountable, but definitely something we will have to be on extra alert for to make sure she doesn't get unnecessarily injured.

I don't know why this revelation is hitting me so hard, but for some reason it is. I think putting a medical term to it is bothering me a lot. For some reason, saying she has brain damage doesn't bother me. When I put it in the context of a stroke or cerebral palsy, I have a meltdown. Nothing's changed but the word I use to describe it, but it seems to make a huge difference to me. So Paul told me to stop looking for a medical term and just celebrate the ways Molly has surprised us. I think I needed the proverbial 'slap in the face' to stop that train of thought.

Paul moved on to Christmas and how I am holding up. I told him I'm doing much better than I thought I would be, but I would be lying if I said the past week hasn't totally stressed me out. In the past, all I've wanted was to be with as much family as possible for Christmas Eve and Christmas day. I love the chaos, and screaming, and excitement that comes from all the kids together. But this year I'm craving quiet simplicity. All I want is to be at home with my family and my parents and celebrate the birth of the Lord completely together, without the distractions of everyone else.

Trying to get this across without totally offending some family members is the problem. I feel like I'm between a rock and a hard place. I know either way we will have a fabulous Christmas, I just want to feel like I'm in more control of it this year I guess. Paul recommended putting a fixed time limit on anything to do with someone else because our family is still healing from everything's that happened and shouldn't be forgotten. He even said I could blame everything on him if we decide to stay home. :)

I just wish it was that simple.

Tuesday, December 6, 2011

Memory Replacement

One year ago today (Dec. 6th), I got the phone call that no parent ever wants to get. The 'get to the hospital right now because your kid isn't doing well at all' call. When I arrived at the hospital I ended up pacing the floor for over an hour before they would let me back to see her because 'there are too many medical personnel working on her'. Once again, I knew what they were saying, but I didn't fully process it. It began a two day vigil to see what would happen. She had several crashes/codes/whatever you want to call it over a 20 hour period(the most likely source of the brain damage). At the time I forced myself to take a picture solely because I knew one day I would want one.

Fast forward one year.

Today was Molly's follow up with her GI. I was hoping to hear that she was doing well, and would only need follow up visits once a year and labs done once a year. Maybe get clearance to attempt dairy and think about switching her off of formula. What happened was even better than that.

He looked at her, examined everything, listened to everything, then we talked about how we handled her 'reactions' and what we were feeding her. Then he told me that she seems to be 100% adapted (about 2 years earlier than we thought she would), and from his perspective she is a completely normal kid now!!!! He was shocked at how good we've been with food, then he told me that there are no restrictions moving forward! That we should work on weaning her to whole milk, and no food was off limits (but still take the introduction to each thing nice and slow to see if she'll react first). I couldn't believe it! I asked about the prevacid and he said to take her off as of tonight and see how she does.

If it was possible to float on air, I think I would have. In my wildest dreams the appointment didn't go that well. As we walked past the hospital gift shop, I decided to get a little Christmas decoration to symbolize the awesomeness of the day. And then I cried on and off the whole way home.

We did the bloodwork to test levels of vitamins a, d, e, b12, iron, and her blood count. A while later, Dr. Pohl called me himself to tell me that everything came back totally normal!!!!! We can take her off the vitamin D supplement (meaning her bones are no longer overly brittle) too! I hung up and started to cry.

If someone would have said a year ago that today Molly would be doing so amazingly well, I would laughed in their face and told them to dream on. It would be impossible not to recognize the multiple miracles we have seen in Molly's short life already. The irony of the date was not lost on me. I've decided I could not have asked for a better memory replacement for the day.