Tuesday, August 12, 2014

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. 

Thursday, July 31, 2014

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.

Wednesday, July 30, 2014

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.


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.

Monday, June 16, 2014

First Time Eating Vegetables

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


Thursday, May 22, 2014

6 Months Later

It has been 6 months since we first welcomed Madelyn into this world. So many things have happened in those 6 months and I have been changed permanently. She has been doing amazing since her homecoming on March 25th. She has a nurse 12 hours a day during the week and loves all the attention that is showered on her from the nurses, Dan and I, and all of her other family members. She loves cuddling and doing things that she is told she can't do yet (rolling over, smiling, giggling).

We haven't been without our challenges though. She has become very good at pulling out her NG tube in the middle of the night. Her broviac sprung a leak one night and led to our first late night trip to the Unirveristy of Iowa Emergency Room.

I still share Madelyn's story regularly. And every time I do, I am reminded how God has touched our lives over the last year. As Madelyn grows, I am amazed at what a miracle she is. I hope that I can some day help other families going through what we did. Thank you again to everyone for the positive thoughts and prayers over these very long months!

Maddie's beautiful smile