This picture of Maddie was taken on thursday, 2 days after her surgery. The apparatus on her nose is the C-PAP and the tube in her mouth is how she eats.

Maddie is doing fantastic, its 1:40 pm all 3 boys are sleeping, and the Bills are winning and looking quite impressive; life is good. I just got home from the hospital and Annie is on her way up and she will be so happy to see how good are little girl looks. She is just about recovered from her surgery. They took the tube out of her side and as mentioned previously she is off the ventilator and back on the C-PAP (nose breather). The nurse told me today that during rounds (when all the doctors stand around Maddie and discuss her progress and condition) the doctors were talking about starting sprinting her (practicing breathing on her own).
They had noticed some blood in her stool; however after several x-rays of her abdomen it appears to just be some trauma from the surgery and nothing to be overly worried about.
When I was at the hospital this morning, Maddie was wide eyed and looking into my eyes and she has so much life in her eyes. It was so encouraging and refreshing to see that look. Naturally I did not have the camera but the next time I go I will take it up so you cab all see that look as well.
Luke continues to impress us with his ability to sleep; he has made things so much easier on us allowing us to sleep 3-4 hours at a clip each night. He seems to have taken a liking to the Bills or at least football as you can see for yourself in the picture above, he began to do an end zone dance when we scored.
Take care and God Bless we will update when we have more news.

Richard and Annie

Hi everybody, Maddie is doing well and we feel recovering quicker than we had anticipated. Originaly the doctor had hoped to perform the surgery via a scope; however there was not enough room inside her little chest so they had no choice but to cut her. That coupled with the fact that her muscle condition would not allow them to use an oral anesthesia (instead they used narcotics to sedate her) turned a forecasted 2 day recovery period into a several day period.

Today she was still in some pain so they were still giving her some pain medicine and she still has a small tube coming out of the side of her chest to relieve any air that may have been introduced to her chest during her surgery. Aside from that she’s slowly being weaned off the ventilator (breathing tube down her throat) they had to put her on for the surgery (which is a very good sign). We are hopeful that by tomorrow night they will put her back on the C-PAP which is the breathing assistance applied through her nose and start sprinting her, which means they will put it on for a little bit and than take it off for a little bit, continuing this process until she no longer requires assistance.

They also anticipate being able to feed her formula tomorrow once they remove the ventilator which is another great sign that her digestive organs are recovering well from normal surgery trauma and sedatives.

Annie and I will be meeting with the genetics specialist tomorrow and we will update all you blog junkies as soon as we get home from the hospital tomorrow night.

The picture of Maddie was taken after her surgery, and Luke mentioned that we hadn't posted his picture yet and accused us of alreday picking a favorite so we felt we should let you all see him as well.

God Bless,

Richard and Annie

Maddie underwent surgery today to repair her “floppy” diaphragm. The surgery went very well; according to the surgeon they were able to suture her diaphragm into a more compact shape. Normally your diaphragm is dome shaped and when you take a breath it flattens out allowing your lung to expand and consume a full breath. Maddie’s will now stay compact hopefully allowing her to enjoy full breaths and get her off of oxygen assistance. Once that happens we can start bottle feeding her and hopefully get her home. The doctor informed us that depending on her ability to recover she could be of the assistance in anywhere from 2 days to 2 weeks. When we left she was recovering fine and resting extremely well.

Annie and I are so proud of her; she is such a strong little girl. We arrived at the hospital at 7 am and were with her till they took her in at 10:30 am. The nurse informed us when we got there that Maddie had not eaten since 12:00 am the previous night. Despite that she was wide eyed and looking at us hardly crying at all. We will keep you informed as to what kind of progress she is making. Thank you all for your prayers, someone up there is definitely listening to them. God Bless

Richard & Annie

Hello,

Maddie is doing well, however she has a busy day in front of her. Aside from the issues from our last update Maddie has what they call contractures in her major joints. Basically her muscles never really developed in the womb so she needs to learn how to bend and straighten her knees, elbows, wrists and fingers on her own through physical and occupational therapy. Last night she was fitted for some braces to help straighten out her knees and they will hopefully be putting those on her today.

We spoke with the Doctor last night and he anticipates a surgery taking place soon on her diaphragm to correct the “floppiness” on the one side. We have placed calls to both the Pulmonary surgeon as well as the Genetic specialists to talk about the surgery so we will keep you all informed as we hear from them. We are obviously vey nervous about any kind of surgery however upon completion this will hopefully have her breathing stable on her own.

Hope you enjoy the picture of our little angel; she is even more precious in person. We can’t wait to bring her home so you can all meet her in person. Take care and God Bless

Richard and Annie

Hi-
As of today the key issues with Madie are her breathing and being able to eat via a bottle. Normally we all use about 21% of the surrounding oxygen to maintain a blood-oxygen saturation of 100%. Presently Madie requires 29-31%. This is an improvement considering that she was requiring anywhere from45-75% about 3-4 days ago. Speaking with the Doctor yesterday he told us that Madie needs some time to grow and mature. Her diaphragm (which is a key organ for the whole breathing process) is what the Doctor is calling floppy on one side due to a lack of muscle tone and he feels that this may have been the cause of her lung on that side to be a little underdeveloped compared to her other lung which is likely the cause of her breathing difficulties.

However like I said she is improving everyday and the number of times she defribulates (when that 100% figure above drops significantly) has decreased. Her ability to feed with a bottle will most likely improve when her breathing becomes more stable. She truly is the most adorable thin in the world and we will post some picture of her as soon as they take the tubes out of her mouth and nose. Madie does have some issues with muscle development that may or may not be correctable with therapy and surgeries but right now those are the least of our concerns; we just want to get her home and cross those bridges as we get to them.

As for Luke, well he is just the perfect little boy. He eats well and sleeps well sometimes sleeping 3-4 hours at a time which is huge at nighttime and certainly not a schedule that Ann and I were accustomed to with either Nathan or Zack (they ate every 1 1/2 hours).

Annie and I have been completely overwhelmed by the compassion and support from all of you. The flowers, gift cards and the fact that we have not had to make a dinner since we came home from the hospital is so greatly appreciated, yet even more overwhelming than the gifts is the fact that so many of you pray and care so much for this precious little angel that God has given us. Thank you all again so very much for your support and we will keep you updated as much and as often as possible.
Richard and Annie