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!

 

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

NICU - Day 115

Date: March 17th

NICU - Day 110

Date: March 12th

They have started only weighing Maddie twice a week, on Mondays and Thursdays. Today we saw pretty much everyone involved in Maddie's care: her GI doctor, the social worker, the care coordinator, the nutritionist, the central line nurse, her NICU team, the physical therapist, and child life. Whew!

The update on Madelyn being able to come home:
When Maddie was born she weighed 1195 grams, which made her qualify for disability. She was placed on Medicaid, but because of the county we live in, it was switched over to a managed care insurance company. When it was decided that Maddie would need to go home with a nurse for 12+ hours a day, the in-home nursing company attempted to get the care plan approved by Medicaid and were told that the managed care company did not allow this service. Therefore, she would need to be put on straight SSI Medicaid. We have now spent nearly a week to get this accomplished. The social workers and care coordinator have been working VERY hard to get this approved and Dan and I even spent time calling DHS and Medicaid to try to get this done. We have run into a lot of brick walls. Now she has two cases open, one with the managed care company and another with SSI Medicaid. Every person we call at Medicaid and DHS gives us a different answer, so that's fun.

Today it was decided that Maddie can come home on March 25th! Yay! Except the nursing service may not be ready by then because Medicaid hasn't approved her funding yet. Boo! Basically, it feels like we are getting nowhere. Below is Maddie's reaction to all of this mess.

Captain's log, Day 110: All hope of leaving this place appears to be lost.

Maddie's bottle feedings were raised to 35 mLs today. If she continues to do well digesting it, her overnight feedings will be raised this weekend as well. She is now getting 30% of her calories from breast milk. Maddie got a massage from the physical therapist today and was a lot happier and more active afterwards.

NICU - Day 109

Date: March 11th
Weight: 3510 grams

NICU - Day 108

Date: March 10th
Weight: 3470

NICU - Day 107

Date: March 9th
Weight: 3470

There was a lot of cuddling again today. Dan's grandparents, mom and sister came to Iowa City. Maddie had a good time with all of them and even got her own pair of sunglasses from Aunt Janelle! 

NICU - Day 106

Date: March 8th
Weight: 3440 grams (7 lbs 9 oz)

NICU - Day 105

Date: March 7th
Weight: 3360

Maddie cuddled with Grandma Ann and a volunteer cuddler today. She was crying when Grandma Ann got there and as soon as she was picked up, she was fine. When Grandma Ann left, she started getting fussy again and the nurse got her a cuddler that was volunteering at the hospital. 

NICU - Day 104

Date: March 6th
Weight: 3350

Her bottles during the day were increased to 30 ccs.

NICU - Day 103

Date: March 5th
Weight: 3360

Getting ready for St. Patrick's Day

"Come back to me binkie! I love you!"

Sleepy bunny

NICU - Day 102

Date: March 4th
Weight: 3360

NICU - Day 101

Date: March 3rd
Weight: 3260

Maddie's overnight feeding was moved up to 10 ccs per hour.

NICU - Day 100

Date: March 2nd
Weight: 3200

Tonight, we watched the Oscars and Jordan joined us! 

Maddie thought he was the real Leo DiCaprio

I lost BIG TIME. Even Maddie beat me. 

NICU - Day 99

Date: March 1st
Weight: 3180

Wearing her very first pair of jeans!

We call this the "Irish Teddy Roosevelt" look.

NICU - Day 98

Date: February 28th
Weight: 3160

NICU - Day 97

Date: February 27th
Weight: 3140

NICU - Day 96

Date: February 26th
Weight: 3150

Bath over and time to cuddle with Grandpa!

"You ask me on this, the 96th day of my life." -Godbaby

NICU - Day 95

Date: February 25th
Weight: 3100

NICU - Day 94

Date: February 24th
Weight: 3130

NICU - Day 93

Date: February 23rd
Adjusted Age: 10 days
Weight: 3080 grams (6 lbs 12.5 oz)

"Seriously Mom, don't take pictures of me when I'm trying to sleep."

"Easy on the ears!"

"Mmmm...Cuddles."