HAPPY HOLIDAYS

As you can tell Louie is thrilled that it's Christmas and once again the reindeer antlers have been pulled from storage. Kind of reminds us of the dog from The Grinch Who Stole Christmas. The smile on Luke's face is one of pure enjoyment for the fact that we were told at Maddie's lung appointment this morning that we can take her off both the monitor and the oxygen throughout the day and she will only require them at night when she is sleeping. We will have another appointment on the 27th of this month at which point we are confident that she will be off both 100%. I can not express the enjoyment of finally being able to traverse my own house with Maddie in hand. The freedom of being able to do that is priceless and we can only imagine what it means to her to be done with the same corner of the house 24/7. We just got home and she is whooped and sleeping so as soon as she wakes we will post some new pictures of her without the nasal tubes.
Once again she has reached another milestone that would not have been possible without her strength and all of your prayers, so again we thank all of you for the support and God for granting our Maddie the strength and determination to turn another corner.

Hello everyone; We know it’s been a couple of weeks since we last updated, however we had a rush of various Maddie appointments with virtually every kind of doctor imaginable so time has been a hot commodity around here.

As for Maddie’s progress, she is doing very well. She continues to gain weight slowly but surly and is currently 8 lbs 2 ½ ozs. We have had several visits with OT/PT and they are happy with her progress and continue to challenge Maddie’s range of motion through splints and stretches that Annie and I keep up with at home as well. We are waiting for an assessment to be done at the house next week to determine if Maddie qualifies for home therapy, which were confident she will. The orthopedics want to see her again in 6 weeks at which point we are hopeful they will set some kind of agenda as to correcting her hips which are dislocated, her scoliosis as well as her other contractures. They informed us at our last visit that she MIGHT require surgery in all these areas but basically it’s a wait and see time will tell situation.

On a day to day basis at home both Luke and Maddie are doing great. Luke basically runs the house and demands attention either through smiles that are irresistible or a high pitched shrieks that echo throughout the house. Maddie has found her smile as well although she is stubborn with it in that she won’t share it with the camera. They both seem to thrive when we lay them next to each other, must be a twin thing.

Hope everyone had an enjoyable Thanksgiving, take care and God Bless.

1 Week Under Our Belts!

Maddie has been home for a week now and continues to improve in all aspects. Her current weight as of yesterday is 7 lbs 11 1/2 ozs. She was 7lbs 6 ozs when she left Children's last week. According to her pediatrician she should be gaining about 1/2 oz a day so she is doing well. She does still reflux quite a bit which had us concerned about her weight so we were relieved to find that she was gaining weight. She is not bottle feeding quite as well as we had hoped she would be at this point, so for most of her feeds she receives a majority of it through the feed tube. It's taken us most of the week to get the whole feed tube down as far as knowing how high to have the syringe so that the formula trickles down at just the right speed so as not to fill her little belly to fast causing her to send it all back at us. (Just for a visual you can see her feed tube in the picture above. It's a big syringe (just under the yellow animal)connected to a long tube (running by the green pacifiers)that attaches to another tube (at her feet by the pink and white blanket) which in turn is connected to a button right on her belly where the food enters her stomach.)

Maddie's new challenges now will be pushing her limits as far as her range of motion goes with all of her joints through physical therapy. She came home with splints for her feet, legs and hands as well as a brace for her hips. Yesterday she had her first physical and occupational therapy follow-up since leaving the hospital and it went extremely well. Dominique and Nancy are Maddie's therapists in those respective areas and have been working with her since day 1 and for that we are extremely lucky. They, much like the nurses, have treated her as if she were their own and we are very optimistic that Maddie will continue to progress as she has thus far based on past progress and the fact that Nancy and Dominique are her therapists. Thank you ladies.

As for everyday life here in Orchard Park, things are about as hectic as we had imagined however aside from Maddie's extremely structured feeding schedule we are thoroughly enjoying flying by the seat of our pants.

Zack was sleeping so he's not pictured. It's also the reason we were able to put the twins on the floor!

Two days have passed and all is well!

Maddie is doing great and so is Luke. We truly believe that coming home was the best thing for her. She's eating great, and keeping it down (the formula that is) and has gained 2 ounces since coming home. The first morning with both of them in the house was surreal. They both woke up at the same time; Maddie moaning softly and Luke screaming like he's being tortured, and after a minute they both stopped and amazingly started back up at the same time about 10 minutes later. Totally weird. This is so awesome; the concept of twins is such a reality now with both of them under the same roof. When we layed them on the floor together they acted as if they have know each other for at least 9 months.
Since so many of you read this we thought it would be appropriate to tell you all something using this forum. When we went into Children’s Hospital we had no idea what it was all about. Sure we had seen the Variety Club Telethons and I'm sure we are all aware that at one point a short time back the idea of closing the doors there was looming. Still we had no idea what exactly it was that they did there. We tell you this now; Woman and Children's Hospital will for ever hold a dear spot in our hearts. Maddie is one heck of a strong girl with a ton of spunk and a will like no other, yet we can honestly say that her being home here today in such great condition had alot to do with the diagnostics and treatment from the doctors and more importantly the love and care she received on a daily basis from her nurses. So many nurses have touched both Maddie and our hearts and we could never be thankful enough for their care and love for her as well. Jan, Adrienne, Julie, Roxanne, Kathy and Betty just to name a few of Maddie's nurses deserve a spot in all of our prayers for the love and compassion they display for the children they care for 24/7 as if they are their own. We witnessed this on a daily basis and never once did they seem like someone just doing a job. They always went the extra mile with both Maddie and our family. In addition we would like to take this opportunity to extend our gratitude to Jan for answering our never ending questions as well as giving us the confidence that we needed to bring Maddie home and know that we could take care of her. She prepared us extremely well, and for that we will forever be grateful. This March we will watch the Telethon with new meaning and more importantly we will watch it together as a family with Maddie.

There's no place like home, there's no place like home. The heels of Maddie's ruby red shoes have clicked together for the last time and now Kansas is Orchard Park NY. We brought her home this evening at about 6 pm and are currently still celebrating so this update will be short. Enjoy the pictures, it's so nice to be able to see all 4 of them and especially the twins together at last. We will keep you all posted and continue to post pictures of all the kids.

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

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