Maddi is gaining weight!

Maddison had a doctor’s appointment today with her pediatrician. It was a great appointment! Within 2 weeks Maddi has gained 1 lbs 1 oz! So she is now at 13lbs 1oz!! WHOO… He was very happy with her weight gain and her O2 stat was 91 which was the highest she has ever been at his office. She did have to get 2 shots so she wasn’t happy about that but overall it was a good appointment! Next week we have an appointment with her cardiologist. I am eager to hear what she has to say about her progress. I am very happy with her weight gain and she is doing very well at home!

Maddi got her first EYEBROW haircut! Haha… her eyebrows are forever long and they were actually getting into her eyes so I had to trim them. She got SO upset like I had cut a part of her away… poor thing! She was attached to those bushy eyebrows!! Haha… They are still bushy! She’ll love plucking those when she gets older!! Her head hair is growing like crazy. I’d say it’s about an inch long if you pull it out. She’ll surpass Kenzie with her hair at some point!

I will update on how her appointment goes on Monday with her cardiologist. I want to know what she’s thinking about another heart cath. From what we were talking when we left the hospital was an end of November date, hopefully that is still okay. I really want her home through Thanksgiving and I think with her o2 stat today she’ll be happy with that! I’ll keep ya posted!

Ashley

Surgeon Appointment

Today was the appointment with Maddi's sergeon that did her intestinal surgery. It was a long hour drive to Orlando to go to a 30 minute appointment where he said "that looks good", then another hour back. But atleast we know everything is going well with her Nissen surgery scar. So far she is doing really well with that surgery. She still has a bad gag reflex but nothing comes up. We have to use a tube to vent her a lot of the time and she is super gassy. She was kinda like that pre-surgery, now it's worse.

I have one appoitment a week over in Orlando for the next 6 weeks! I tried to get some of them on the same day and this or that doctor is out so it didn't work out. I guess it's better than sitting in the hospital day in and day out but it's still a long drive. Although Maddi did great today. She slept on the way there and on the way home so it worked out.

Well just wanted to post about her appointment today and let all of you know she did well and he said she looked good! Next week we see her peditriction who is going to give her shots :o( poor baby!

-Ashley

Maddi is HOME!

Maddi came home from the hospital on Wednesday afternoon. We are SO glad to be home. She has been doing really well at home with her family. She is loving spending time with big sister, Mackenzie. It's funny how fast we fell back into a routine. It feels like she never left. We are so happy she gets to spend Halloween here with us. I just finished up their outfits last night! I need to get a pre-Halloween photo! They will be SO cute! My little M&M's are together!

We have a lot of doctors appointments within the next couple of weeks. I am going to try to get some of them on the same day. They have like 2 or 3 a week! It's crazy! I hate driving to Orlando especially with Maddi in the car! I hope to get most of them done all in one day! We saw her doctor here in Lakeland on Friday. She had to get two shots :o( and I had to get the flu shot too :o( Ouch! But the doctor said that was the best way to prevent her from getting sick! So I'll take a little poke for Miss Maddi.

I updated a new video on her page here. She was just talking away and had hiccups at the same time! haha.. it's was funny! She even talks in her sleep at night... It is SUPER hard to sleep at night when she is talking. It takes me a few minutes to figure out if she is upset or just talking. Most times it's her talking! Guess she gets that from me :o)

I hope to get the girls to the pumpkin patch this week to take photos. Kenzie's school sets up a huge pumpkin patch each year and we've gotten photos of her every year, now it's time to get photos of both girls! SO excited! I will make sure to post one when I get them done!!

Thanks for keeping up with Maddi here on her blog. I enjoy posting updates about her and hearing your comments about her! Keep the prayers commin', can't ever have enough prayers!

-Ashley

Updates on Maddison

Hi all! Thanks to everyone who has been on the Pray for Maddison website. My mom created this page to give information on how to donate to our family and for an opportunity to read and see more about Maddison and her life. I had one ask what her other site was and it is on carepages. I think you can look up her name but her page is listed under MaddisonLeighFord.

I also wanted to take this opportunity to thank everyone who donated to our family. Please know that was truly a blessing to us and it allowed us to not feel so much of a financial strain while we have been in Orlando taking care of Maddison. My mom finally got the bracelets in. If you gave through PayPal we have your address and you should receive your bracelet shortly! If you gave by some other means please email me so I can make sure we have your address so we can get one to you! My email is aford514@aol.com

And now for the important stuff! An update on Maddison. So far we have been at Arnold Palmer Hospital for 2 months (today actually). Maddison has gone through more than most go through in a lifetime. We have undergone an open heart surgery, 2 heart caths, and a Nissan surgery while we have been here. Which although we feel we've been here forever, that is a lot for a little person to go through in such a short period of time! She was on a ventilator for about 30 days less the two attempts they had taking her off. Third time was a charm and she was off! She was on nasal air for a few weeks and then underwent the Nissan, which she was put on the ventilator for yet again. They were going to leave it on her for 24 hours but she was having none of that. Within 2 hours of coming back from the surgery she woke up and was not happy with the vent! They took it out!!

Since the surgery she has done well. We had a few rough days where she felt bad. The pain meds they were giving her didn't seem to give her much relief. She had been on them so long she'd built a tolerance. But now, being 8 days post op she is doing wonderful! Her scar from the Nissan is pretty small, although very long. It starts where her heart scar ended and goes down to her belly button. She has done really well on her feeds. Currently she is on continuous feeds and getting one ounce per hour. Which is her goal feed. Yesterday and today they are working on getting all her meds through g-tube. That has been successful so far. They are thinking she will be able to go home on Thursday or Friday of this week! We are thrilled!!

As for future plans with Maddi. They are scheduling another cath for her November 31st. Which should be a one night stay. The cath doctor felt she would need one cath per quarter this next year with the idea that another open heart surgery would be needed within 8 months to a year. I feel like we can't get away from this place for too long! They said the stints they put in only have a years worth of life to them before they need to be taken out, which is the need for another surgery. They said as long as all goes well with that surgery they didn't feel she'd need another until her teen years. That is our hope!

Thank you all for checking on Maddi, praying for our family and giving so much of your support to us! We would not have gotten through this very hard time without that!!

-Ashley

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)