Hi everyone, we just wanted you all to see how fantastic Madelyn is recovering from her surgery on Tuesday. This picture was taken of her on Wednesday. I just spoke with Maddie's nurse and she informed me that the surgeons had just left Maddie and gave her the ok to start feeding through the tube so that is a start and Ann and I are both very encouraged. Enjoy

Maddie had her surgery yesterday to insert what they call a G-Tube for her feeds. They actually pulled her stomach right up against the inside of her abdominal wall and inserted the tube. She now has a little button that sits almost flush against the outside of her belly that we will be able to open and insert a tube for her feeds. The doctor said she did great during the surgery and she was resting comfortably when we left to come home last night. We were told she could take anywhere from 4-6 days to recover depending on how she reacts to the feeds now, so we are keeping are fingers crossed that she will be home by next Wednesday at the latest.
Also the physical and occupational therapists have expressed to us how pleased they are with Maddie’s progress with her joint contractures. One of them even said that they didn’t think after seeing her for the first time that she would do so well with her hands but now feels that she should have complete movement in them some day. Just another sign of how strong and what a fighter our little angel is. We are so excited for her to come home and for all of you to meet her. You can see by the look on Luke’s face how excited he was when we told him the little girl he had been kicking for 9 months was going to be coming home very soon.

GO CARDINALS

Hello everybody, we received some good news yesterday when we were informed that Maddie’s reflux disease is not so severe and that the procedure we had described to all of you in a recent post involving her stomach being wrapped around her esophagus is not necessary. She continues to slowly gain weight and is almost 7 pounds. We are anxiously awaiting a surgery date for her feed tube so that it can be done and over with and so she can begin the recovery period and come home.
The past 2 months have been so hectic, yet have moved by rather quickly and that is solely because of both of our families and their continued support. Maddie is so blessed to have been born into the Chelus-Lippitt clan. As much as we would like to, Ann and I can not be at the hospital every minute of every day yet there is always family at Maddie’s bed side. Grandma and Grandpa are always either up at the hospital or at our house with the boys so that we can go see Maddie together, Mema is like clockwork at the hospital every day. Our sisters and cousins have all sacrificed time with their own families on a daily basis to either help at the house with the boys or spend time with Maddie. While we have not been able to bring Maddie home our family has certainly taken home to Maddie which has really made this whole experience so much easier. We say this in hopes that you will pray as well for our family that they may have the continued strength to carry on as they have. Thank you and God Bless
Richard and Ann.

(Luke and Maddie look great in Cardinal red do they not. While he still is unable to speak, Luke predicts Cards in 5 with his left hand.)

If you are reading this, you obviously have your power back. Hope all are doing well after the power outage that hit us a few days ago.
Maddie is progressing very slowly toward full bottle feedings. The doctors have begun talking to us and are preparing to perform surgery to insert a feeding tube in her stomach. After talking thoroughly with several doctors as well as nurses, this is the best thing for her and really can be viewed as a positive move. It sounds as though they will do this toward the end of this week and after a 3-4 day recovery period, she will hopefully be able to come home. She may or may not be on oxygen when she comes home, along with the feeding tube.
They have done several additional MRIs on her brain and spinal cord which have come back normal. We are obviously thrilled. Earlier this week, they performed an upper GI which reconfirmed that she has severe acid reflux disease and they will now perform a ph probe on her. This will determine just how severe her reflux is and see if an additional procedure is necessary to prevent damage to her esophagus from the reflux. This procedure would involve wrapping the top part of her stomach around the base of the esophagus which would close it off and eliminate any acid from flowing back into her esophagus from her belly. They will perform this procedure (if they need to) along with the feeding tube surgery.
We know some of this news may not sound all that great, however, you should all know that we are very encouraged with the progress that Maddie has made. The feeding tube is not permanent (we will continue to bottle feed her on a regular basis and the tube will be used to feed her what she does not take from the bottle). It is a means for getting her home as well as getting her the proper nutrition she needs. This will give her the energy and strength she needs to fully recover from all that she has encountered since her birth.
Thanks again for your thoughts and prayers. God Bless you all.
Rick and Ann
(GO CARDINALS)

GREAT NEWS to report to all of you: Maddie had a series of neurological tests performed on her this morning to determine if she has any kind of nerve or muscle diseases and both her muscles and nerves were found to be completely normal. This is a major victory for Maddie and a huge relief to Annie and I as this was a major concern of ours. This would seemingly point to her contracture issues being tendon related which is the bset case scenario for Maddie's future.
We can now focus on getting her up to speed on bottle feeds;she is currently taking about 1/2 an ounce per feeding from a bottle. They have told us that they will give her 2 weeks to get up to the 3 1/2 to 4 ounce mark via bottle or else they will have to do a surgery and insert a feeding tube into her stomach. Right now nutrition is the most important thing for her to get healthy and the tube would be necessary in order for her to maintain her health. We pray and hope that all of you will continue to do the same that Maddie may conquer the bottle and come home to all of us soon.
Thanks again and God Bless
Richard and Annie

Another week has passed and Maddie continues to make remarkable progress. As of today she is completely independent of the C-PAP so the picture above is how we can now see and enjoy her everyday. (In the picture she is wearing what they call a nasal canyula; it provides her with some assistance breathing, just not as much as the C-PAP)
It appears that she is completely recovered from her surgery and judging by her ability to maintain blood saturation without the C-PAP it was successful.
They have begun to get a little more aggressive with physical and occupational therapy as she now has splints for her legs, feet, wrists and hands. She continues to make gradual progress in those areas in the sense that she is not as tight as she was at birth. Doctors have been able to rule out the brain and muscle as the cause of her contractures which leaves either the nerves or the tendons as the source of the contractures with the tendons being the best case scenario. This week there was a team of neurologists at Maddie’s bed side conducting all kinds of tests however they have been unable to determine what the problem is exactly and they informed us that it’s often hard with babies to determine if it is in fact nerves since babies don’t react in the same fashion that an adult would to certain neurological tests. We are keeping our fingers crossed and continue to pray that it is just a tendon issue that can be resolved through therapy.
Yesterday they started feeding her by bottle again, about a ¼ of an ounce at a time and the rest is fed through the tube you see in her nose. This is a huge step in the direction of Maddie coming home, which we are hopeful will happen soon. As I stated before, she needs to be able to maintain her blood saturation level and eat on her own in order to come home.
We once again would like to take the time to thank all of you for your thoughts and prayers as well as the gifts and the dinners you all have sent our way. This past month could have been so much more chaotic and wearing if it weren’t for all of you. Your time spent on us has allowed us to adjust to this crazy schedule but more importantly it has allowed us to maintain a level of attention that both Nathan and Zachary need so as not to get lost through out this process. So again, from the bottom of our hearts, THANK YOU and GOD BLESS you all