FTK: For The Kids

Around this time a year ago, a coworker of mine, told me about Dance Marathon at the University of Northern Iowa. I knew about Dance Marathon when I was at Loras, my sister had attended the one at University of Iowa while at Loras and one of my roommates at Loras had been super involved. I'm not sure why I didn't participate at Loras, and I really wish I had.

Greta (my coworker) asked if Dan, Maddie and I would be interested in being a Miracle Family with DM at UNI. I told her sure while not really knowing what that meant. I am so glad that I said yes to this experience. DM raises money for the University of Iowa Children's Hospital throughout the year with events and then in March is THE BIG EVENT. Hundreds of college students show up to dance, spend time with the miracle kiddos and their families, and raise money FTK (For The Kids). After last year's event, I felt really guilty because we are through the worst of it. Maddie has recovered from her surgeries, she is seeing GI once a year now, and some of the Miracle Kids are still facing chemotherapy, more surgeries and for some of them, they won't make it to adulthood.

Today I read a blog entry from Greta that talked about how the DM team is wearing hospital bracelets from now until the Big Event in March. I cried. A lot. And then it occurred to me. Everyone's story at DM is different. And every case of NEC is different. For those who have never done the research on NEC that I have here are some facts:

• 10% of infants weighing less than 1500g will get NEC.
• Mortality rates are 50% or more depending on severity.

If my math comes out right, that is about 5,000 babies a year who will be diagnosed with NEC. And I have talked to so many moms who have lost their babies over the last three years.

We do DM because of those families. Those babies who won't get the chance to dance. And this is part of the important work that Dance Marathon is doing in children's hospitals across the United States. If you would like to read more about Dance Marathon, I invite you to visit their website here. If you would like to donate to Dance Marathon, please visit here.

18 Months Later

On Friday, Madelyn turned 18 months old. It is surreal how fast time goes when you have a child. She is doing exceptionally well. April 9th, she got her NG tube out, so she is now completely tube free. She moves quickly and talks gibberish a lot. She has a handful of words that she uses a lot and some catchphrases that are all her ("Oh poop", "Let's go", and "No way" are among them). She loves everyone she meets and often makes friends with the elderly. Today, after church, she walked quickly to get around a woman in a wheelchair and then stopped and smiled at her while tipping her head. Madelyn currently has 8 teeth and has been known to use them on her mother, specifically when she is trying to avoid falling asleep. She is very independent and likes to do things all on her own. She loves bath time and I feel like she would live in the bathtub if I would allow it.

Other facts about Mad Dog at 18 months:

1. She has discovered Sesame Street and Elmo. She will sit and stare at Elmo and then get up and wander off when characters that she doesn't like as much come on the show.
2. She thinks it is hilarious when I tell her that she smells like beef and cheese. She also thinks it is funny when we react negatively to her smells in general.  
3. She has begun hiding to poop. She will all of the sudden be silent (who knew that silence with a toddler was so suspicious) and be hiding behind the chair or in the corner and sure enough, she's pooped. 
4. Her favorite room in the house is the bathroom. She is constantly trying to lead me to the bathtub or trying to reach up to get her toothbrush. She cries when we take away her toothbrush sometimes. 
5. She eats pretty much anything, including non-edible things. She is definitely a chewer. 
6. Her favorite pacifiers are still the newborn ones from the NICU. Sometimes she will have a different one in her mouth and then find one of the newborn ones and she will trade for it. 
7. She has three pairs of shoes but will only keep her blue and pink sneakers on her feet. Therefore, she wears them with everything, including dresses. 
8. She is very, very ticklish. On her feet, the top of her head, her back, stomach, armpits, and neck. 
9. She loves spicy food. Even when her nose starts running and eyes are watering, she keeps eating it. I tried giving her plain tortilla chips one night and she cried until I gave her some more of my spicy chicken tortilla soup.
10. She loves playing with her kitchen. She has been carrying around a cupcake pan and spatula from her play kitchen for the last two days and I can only get them away from her after she falls asleep holding them.

I apologize for not keeping up on this blog, but will make more of an effort.

Lots of love to all our readers,

Mary

Trying to Fatten Up

Maddie came home from the hospital on August 2nd. Since then she has been working on eating more at each sitting. At her GI appointment on the 7th, they increased the calories per ounce of her formula. She was spitting up quite a bit before that but the increased calories and decreased volume during the day have helped. She still doesn't always do well with the increase in food. She lost a little weight between leaving the hospital and her GI appointment. Today (August 11) she wouldn't eat baby food at her 5 o'clock feeding and then wouldn't drink her 8 pm bottle either. She screamed and screamed with no obvious reason. I gave her a bath, which seemed to help. She liked splashing around and tried to eat her rubber duck. 

We are now waiting to see if she will continue to have nursing, possibly at a lower amount of hours, now that her central line is out. If we lose our nurses, it will be a hard adjustment, they've become like family to us. 

Day 2 of Admission - Surgery!

When we (GG Ibeling, Esther, Deb and I) arrived at the hospital this morning, Madelyn was relaxing with her bed at an incline watching cartoons. She looked surprised to see me, like, "Mom, I swear, I bumped the button trying to call my nurse and the television turned on and then I couldn't get it back off." She was thrilled to see us and very smiley this morning.

Watching cartoons from her bed.

They did rounds about 9 am and let us know that they are going to remove her central line and see if she can get by without it. They will give her two weeks or so to see how she is doing without it and then if she is not doing well, they will put a new one in. At this point, it being in and not working is just risking more infection.

Playing with Great Grandma Feikes

Dan's Feikes grandparents arrived this afternoon as well as Grammy Ann and they entertained Maddie because she was getting frustrated with not being able to eat. She had to wait 6 hours after her last food before they could do the surgery.

They sedated her with gas instead of general anesthesia and then pulled the line out. The actual procedure took very little time. I took her down in a wheelchair at 2:55 pm and got back up to her room at 3:00. At 3:12 pm Dr. Potter arrived to let me know that she is out and doing well. At 3:16 pm, Dr. Rahhal came up to see if Madelyn was back yet. We are going to increase her food to 5 oz of formula 4x a day with 1-2 oz of baby food with each bottle. She will stay at 40 ccs of formula an hour at night for 10 hours.

Getting ready for surgery.

Heading down to surgery with Mommy.

Re-admitted Part II

Maddie wasn't bored today. She was visited by Lastascia, Sarah, Sarah's kids, Uncle Trenton, a Grandma Deb, GG Ibeling, and Aunt Esther. She entertained them with her babbling and smiling.

The doctors attempted to fix her central line today, but it didn't work too well. She will possibly need surgery to place a new central line. Her fever was up and down throughout the day and she didn't feel like eating much (other than four ounces of sweet potatoes!). We had to give her formula through her ng tube to make sure she got enough fluids.

Re-admitted

This morning Dan woke me up around 5:15 am due to Maddie had diarrhea. I was at first irritated that I had to get up, then entertained a bit when she sprayed poop out on the bars of her crib and the wall. Dan doesn't do well with poop on wiggly things, so I took over with the clean-up of Maddie while he cleaned the crib and wall. I got her diaper changed and picked her to move her so the sheets could be changed and she was HOT. I took her temperature on her forehead and then rectally. 102 degrees. After many phone calls and packing, Maddie and I headed to the University of Iowa. We arrived here around 8 am. She has now been admitted and we are looking at 3 days or so here. As an added bonus, after they drew blood from her central line, it popped a hole so she will also need that repaired. Maddie also had to get her blood drawn from her arm and an iv put in her hand. You can imagine that she is not a happy camper.

First Time Eating Vegetables

I thought I would show everyone the video of Maddie trying sweet potatoes for the first time!