Thursday, September 10, 2009

Some Background on Maddison

Maddison Leigh Ford was born February 4, 2009 in Orlando, FL at the Winnie Palmer Hospital. Prior to her birth we learned that she has a congenital heart defect call Tetrology of Fallot with Pulmonary Atresia (“TOF”). TOF consists of four different heart defects, Pulmonary Atresia (a complete obstruction of the right ventricular outflow tract), Overriding aorta (an enlarged aorta overcompensating for the missing pulmonary trunk), Ventricular Septal Defect (VSD) (a hole between the two bottom chambers of the heart) and Right Ventricular Hypertrophy (the right ventricle is more muscular than normal, causing a boot-shaped appearance).

Maddison was also born with an intestinal defect called Duodenal Atresia. When she was 5 days old, she had surgery to correct the intestinal problem and was in the hospital in the NICU after birth for 50 days. Because of her intestinal and reflux problem, she ended up coming home on a g-tube for feeds.

Originally, the plan was for Maddison to have open heart surgery in January, 2010, but because of some complications, the surgery was moved up to August 12, 2009. During the open heart surgery, which lasted from approximately 7:30 a.m. until 11:30 p.m. they discovered that she did have pulmonary arteries although they are super small. Surgery day was very touch and go for Maddi, and when she finally got to the ICU she was on a bypass machine for several days after the surgery in critical condition. They were able to get her off the bypass machine, but it has been over 4 weeks now, and she is still on the ventilator. They have made two unsuccessful attempts to wean her off the ventilator, but because of lung problems that have developed those two attempts were not successful. Today they converted her g-tube to a gj-tube to feed her directly in her intestine to try and get some nourishment in her so she can get some of her strength back. She does have a bad gag reflux, and they are concerned about that because of the ventilator being in, as well as the poor condition of her lung and the possibility that she may aspirate. We are hopeful that the gj-tube will help with this problem.

Maddi has had a bumpy road so far, but thanks to the many continuous prayers, our family has faith that Maddi will be home soon. I am Maddison’s grandmother, and I am posting this blog because so many people have asked what they can do to help. Prayers are our number one request. However, because of Maddison’s medical condition, my daughter, Ashley has not worked since Maddison was born in February because of her constant care and medication required throughout every day and night. At this time, we expect several more weeks in the hospital with this stay, and it is uncertain with the heart caths and future surgeries for Maddison when Ashley will be able to go back to work. For the past month Ashley and Mike (Maddi’s dad) have both been at her bedside, however, Mike’s family medical leave time is up, so he did go back to work this week.

Ashley has been and will continue to stay at the Ronald McDonald house while Maddison is at the Arnold Palmer Hospital in Orlando, and now that Mike has gone back to work, he will be traveling back and forth from Lakeland several times a week when he can. Financially, this has put an unbelievable burden on their family. In addition to their normal living expenses, the additional cost of staying in Orlando and traveling back and forth, and the loss of income from Ashley not being able to work for the past 7 month, they have had to make some difficult financial decision. One of which is to put their home on the market for sale so they can find something less expensive for them to live in.

So, in addition to your prays for Maddison, if you would like to make a donation to their family to help offset set some of their expenses, that would be greatly appreciated. All donations will go directly to the Maddison Ford family. A PayPal link has been created to make on-line donations, or if you prefer to do something specific, like send a gas card or a gift card, you can mail that directly to me and I will make sure that it gets to Ashley and Mike. To mail a love gift, please send it to Ashley and Mike Ford, c/o Debbie Ward-Terry, 4222 S. Florida Ave., Lakeland, FL 33813.

I have also ordered “Pray for Maddison” bracelet bands, which should be here within the next week or so. Please include your name and mailing address with your donation and I will mail you one as soon as I receive them. It will be a great reminder for all of Maddi’s prayer warriors to pray for her throughout the day.

Thank you for all your prayers,
Debbie Ward-Terry (Maddison's grandmother)