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

Wednesday, March 12, 2014

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.

Sunday, March 9, 2014

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! 

Saturday, March 8, 2014