HUGS FOR MADDIE

Bracelets were purchased to help raise money for Maddie's benefit and are available for $2 a piece. Bracelets are purple and have "Hugs for Maddie" on them. Available in medium and large. Maddie has hers!

Maddie's Story

Madelyn Mary Lippitt was born on August 28th, 2006. She is the twin sister of Luke Lippitt and also has two older brothers; Nathan who is 7 and Zachary who is 5. Maddie has endured a long struggle from the early fetal stages of her life up to and including the present. While her future is unknown, her story has been one of inspiration and we would like to share it with you.

I think Ann and I will forever remember the first time we saw Maddie at our 19 week sonogram. The tech first saw Luke and told us it was a boy (our third) and we were just as happy as we were for the predictions by previous techs that Nate and Zack were boys. And then she saw Maddie; "it's a girl". Wow, a daughter. Immediate thoughts of "daddy's little girl" and "mommy's little angel" consumed us. One of the happiest moments of our lives. As the tech spent more and more time examining Maddie the mood quickly dampened and happiness turned to sadness when a doctor came in and told us there were some issues she was seeing that were not good at all. She felt strongly that Maddie had some kind of chromosomal defect and ran some tests. We waited 10 days for the results, the longest 10 days of our lives. The results came back negative for any kind of chromosomal abnormality, yet the specialist maintained that there were too many signs from that sonogram as well as future sonograms to indicate otherwise. So a very long pregnancy ensued. It was a pregnancy of mixed emotions and a roller coaster of ups and downs. On one hand there was as far as a sonogram could indicate a very healthy boy and on the other hand a very unhealthy girl. So many questions racing through our heads, was the doctor right, maybe Maddie will be just fine, what if she's not fine and how bad can this be?

Moments after their birth in the wee hours of a Monday morning our fears were confirmed. Luke was completely healthy and Maddie visually had some very obvious problems. Prior to their birth we met with some genetic specialists who presented us with a couple of different syndrome scenarios based on the pictures they had viewed from the sonograms. She might not live through delivery; she might not live longer than 48 hours after delivery were the outlooks of 2 of the 3 syndromes we were presented with. Maddie was quickly whisked off to the Neonatal Intensive Care Unit where she would spend 73 days before coming home. She was born with severe contractions of all her joints, 2 dislocated hips, rocker bottom feet, a diaphragm that was not functioning properly which prevented her from taking a full breath and required supplemental O2, scoliosis which caused further complications of her breathing and severe reflux that made aspiration an everyday possibility. Genetic Doctors linked all these issues to a freak genetic mutation. She had several surgeries during her 73 days in the NICU to fix some of her issues but as time progressed none proved to be successful. Prior to leaving the NICU a feed tube was surgically placed through the exterior of her stomach into her actual stomach so she could receive feeds. She just couldn't eat orally. To say the least, we had a long road of sleepless nights in front of us.

Maddie came home on November 9th, 2006. With our heads spinning we began to learn a daily routine that would benefit a special little girl with some extra special needs. Slowly the spinning slowed down as caring for Maddie became a normal routine. There would be numerous physical, occupational and speech therapy visits on a weekly basis as well as lung doctor visits and feed clinic visits. Also mixed into the weekly schedule were chiropractic and massage therapy. The complexity of the dozen or so extra steps it took to get her through the day as opposed to the boys became second hand to us. Feeds however remained a struggle. It took us almost 2 years of trying this and trying that to find a feed schedule that Maddie could tolerate as far as keeping food down. It has always been a delicate balance of when to feed her and when to give her stomach a break so as to protect her from aspirating.

Over the course of the first 2 years of her life, Maddie had hospital stays of 12 days and 4 days in addition to her first 73 days due to illnesses. Common colds have always had the potential of wreaking havoc on her body and twice it landed her in the hospital. We have always been very protective of her when it came to keeping her away from viruses.

We had begun to look into a couple of different options for surgeries that would hopefully get maddie off the supplemental O2 and had traveled to Pittsburgh and Cleveland to have some very highly recommended Orthopedic specialists and surgeons look at Maddie. She was a candidate for a surgery that Doctors thought would be instrumental in straightening her scoliosis and in turn correct the non functioning diaphragm which would get her off the supplemental O2. If all went well with that we could than proceed down the road with necessary surgeries to fix her feet and hips. Only one obstacle prevented us from the surgery and that was Maddie's weight. She didn't have enough beef on her so we needed to plug away on her feeds however we couldn't just turn on a switch for feeds. So we plugged away.

As 2009 approached we began working more intensively with a local lung Doctor as to helping Maddie gain weight. One of her main reasons for not gaining weight in addition to the amount she could tolerate eating was shallow breathing due to her diaphragm. Breathing shallow meant more breaths which equated into burnt calories. So after consulting with him on numerous occasions we decided that we would try a method of assisted breathing at night to conserve the calories. It would require an up to 2 month hospital stay but it would be worth the results if she gained weight and we could get her to Pittsburgh for the much needed surgery. Our only request was that we wait until the spring of this year as we did not want to subject her to cold and flu season in a hospital. We were very optimistic for Maddie's future.

As the last week of January rolled around this year a very bad flu was going around and having 3 boys in school and daycare it was impossible to keep it out of the house. By the beginning of February the inevitable happened and Maddie had caught it herself. Things quickly spiraled out of control and on the morning of February 7th 2009 we found ourselves calling 911 as Maddie began to have some serious trouble breathing. She was rushed to Children's Hospital. When she arrived in the ER she was in Respiratory and Cardiac arrest. Maddie's anatomy due to the scoliosis and the contractures had made it difficult in past hospital stays to intubate her and this time was no different. It took an hour to intubate her this time and during that hour there were periods in which her brain went without oxygen. The results of her brain trauma are devastating and overwhelming. She spent another 66 days, this time in the pediatric intensive care unit with Doctors trying to ease the misfiring going on in her head. It took a majority of the 66 days to get her to a point where she wasn’t in what always looked like excruciating pain. Finally after achieving comfort for her she was released home under our care with the assistance of essential care, the pediatric division of hospice.

Maddie never had the ability to talk or walk but she had discovered her own way to communicate and maneuver. Her favorite way to communicate was with her eyes and with her smile and she always had a smile. Her brain trauma is so global and so significant that she has lost all those abilities. The only ability she has is to open her eyes but she cannot see. She has regressed in her feeds and can only tolerate 1/3 of what she used to before throwing up and has lost the ability to protect her own airway. She requires a watchful eye and constant care 24 hours a day.

Needless to say our optimistic appraisal of Maddie's future was shattered on that morning of February 7th. Still, we fight on because we love her and more importantly because she has fought so bravely through so much. She has been behind the eight ball since day one and she has smiled through it all. We are so proud of her and honored to call her our daughter. She has been loved by so many people of whom we know and don't know. She is an angel and her message is God's unconditional love. She has truly been and will forever be a blessing and inspiration to our family and hopefully many more.

We are 1 day shy of being home for a week and so far things are going well. Maddie has for the most part, comfortable days and somewhat rough evenings. We are working with nurses who come out 2x a week and are available 24/7 as well as Maddie’s pediatrician to try and find a balance in her meds that will allow her to be both awake and comfortable at the same time. So far we have not been successful; however we will continue to tinker. Unfortunately it’s a reality that the balance we are in search of may not be a possibility. That being said she spends pretty close to the entire day, eyes closed and resting COMFORTABLY.


So far it has been an adjustment accepting the fact that Maddie is not the same little girl she was prior to entering the hospital on February 7th. The brain trauma issues aside, the facts that she cannot be intubated as well as not being a candidate for a tracheotomy have just about eliminated any chances of her overcoming another illness. So we are left with the grim reality that our little girl is in a very fragile state.


It is extremely difficult to share such news with all of you, but we feel it’s important to be completely realistic with all of you who have been thinking of and praying for all of us. Just as importantly we want you all to know that we will continue on as we have for the past 3 years, with faith, hope and love for our family.


It is great to be home and a family again; it has been a huge boost for all of us to be together. The look of pure excitement on Nathans face when he walked into the living room on Tuesday to be surprised by Maddie’s presence had Christmas morning written all over it, and can be translated into nothing less than pure love for his little sister. It has been truly amazing to see an almost 3 year old little girl who has never uttered a single word, extract that kind of love from all those whom she has come in contact with as well as those of whom she has never even met. We learn from her every day; she truly is an angel and we are blessed to be her parents.


We will continue to try and update this blog on a weekly basis or whenever time permits. We cannot express enough how instrumental all of you have been in getting us through the last 2 ½ months. Family, friends, faith, hope and love has carried the days during that stretch and will continue to carry the days well into the future.

God Bless

Rick, Ann and Maddie.

WE ARE HOME!

We were discharged at 11 am and walked thru the front door at 11:30. We will post more info once we are settled, we are waiting for the boys to come home and see Maddie;They have no idea! Just wanted you all to know she's home.

Happy Easter!

Hope everyone had a Happy Easter.

Well we made it through a weekend with out any crazy developments or setbacks. (A very lonng sigh of relief!)

Maddie remains at 32ml/hour on her feeds and is doing ok with them. We can tell the continuous feeds (24/7) are starting to catch up with her, but hopefully after today we will be able to put her back on her old schedule.

I say hopefully after today because we are cautiously optimistic that she is coming home tomorrow! Barring any setbacks over the course of the next 24 hours she will be coming home at some point on Tuesday, so I'm sure you all know what our prayers are focused on right now.

Nothing has really changed in terms of her condition that made the Doctors say she can come home, we are all just in the same train of thought that she might as well rest comfortably at home so we can be a family again. She will remain in need of a watchful eye around the clock for as far as we can see. She has been approved for overnight nursing at home, however there are no nurses or agencies responding to the request so Ann and I along with the rest of our family will be by her side throughout the days and nights to maintain her comfort and safety.

We will keep you posted on her arrival home.

Your continued thoughts and prayers are greatly needed and appreciated.

Ann, Rick and Maddie.

We are happy to relay to all that significant progress has been made in Maddie achieving a decent level of comfort. A couple of new meds have been added to the mix and they have been instrumental in greatly reducing any kind of pain she was in. She is heavily medicated throughout the day, therefore sleeping a majority of it. While this is not the state we prefer to see her in, it is a thousand times better than our only other option which is for her to suffer in pain.

We are hopeful that we may be able to bring her home by the end of next week. Feeds have been reintroduced and she is up to 32 ml/hour which is all they are requiring for her to be released. She has been at that level for 24 hours now and we are keeping our fingers crossed that she will continue to tolerate the feeds. Aside from that, the Doctors just want a little more time to tweak her current meds and find the perfect balance for her. She has been requiring occasional doses of morphine to treat pain and they would like to be able to eliminate those occurrences.

We will keep you all posted.

Ann, Rick and Maddie

We have been waiting to post since things have been a roller coaster to see what time would tell. Time is not painting a very good scenario for our precious little girl. She has remained on valium and muscle relaxer all week and yet she still remains very irritable and in very obvious discomfort at best 95% of the time. It seems the only time she isn't irritable or in discomfort is when she finally exausts herself from little to no sleep.



They have literally performed any kind of test and consultation you could imagine and all indications point to the significant brain trauma she has experienced. It has become very apparent that her being in arrest and the hour spent trying to intubate her was a catastrophic event. The doctors whom specialize in brain trauma have explained to us that children who experience the type and amount of trauma she has have a strong tendency to not fair so well. That in addition to Maddie's pre-existing diagnosis does not bode well for her at all.



Our focus now is her being comfortable. She has been struggling for quite some time now and does not deserve to be in such pain. Again we could not be prouder of the way she has fought so bravely. We just pray that she can be as comfortable as possible and ask all of you to do the same.

Ann, Rick and Maddie

Maddie's weekend has not been good by any means.

Since thursday she has probably slept a total of 6 hours. Last night was the worst night she's had thus far and several new developments have taken place. She now has a double ear infection, an x-ray has revealed that she may be developing pneumonia and several other cultures are still pending to determine a few other possibilities. Her heart rate was around 200-220 beats per minute throughout the evening, accompanied by a 102-103 fever as well. She had an IV line put back in so they could administer the neccessary antibiotics and her other meds are now being given via the IV again also. They put her back on the high flow canula and have a team of the necessary medical professionals on standby right now in case they need to reintibate her (breathing tube). They have also added valume and a muscle relaxer to the mix as she has become very aggitated as well as very tight. For some reason none of this is helping her sleep nor is it helping her breathe easier. We are stumped!

She is fighting so bravely for so long and no words could convey how proud we are of her and how much it breaks our hearts to see her in this condition. We pray to God that he just give her a break here, she deserves it. We are going to keep this short because it has been a very long and emotional evening. We just wanted to make sure everyone knew where she was at. Please continue to pray for our Maddie.

Ann,Rick and Maddie

Since the last time we posted there have been several developments;some good, and some not so good.

The not so good: Maddie's cat scan results revealed damage to her brain as a result of lack of blood and therefore oxygen during the period she was in arrest. The damage is not centralized, but rather spread throughout. So far we can not tell what the ramifications of all that means and will most likely not be able to tell untill she is completely off the meds and we can see how she has been affected. The doctors say she could get better or she could get worse;only time will tell.

The Good: The doctors just finished rounds and are hopeful that we might (and I emphasize might) be able to get her home as early as next friday. Her old feed tube is back in so the intestinal feeds are on the shelf. Her central line (IV) has been removed so all of her meds are being administered through her feed tube. They would like to get her up to 6 feeds of 150 ml over a 24 hour period before they will let her go. We do not think that is possible (it would put her at 900 ml/day), it took us 2 years to get her to 750. We are waiting for one of the doctors to return so we can express that to them. WE JUST WANT TO GET HER HOME. We have been here 48 days and if it goes much longer we will have common law marriges wtih some of the doctors here and I'm gonna have to start asking for child support !!!(still have our sense of humor).

Right now we are waiting for a brain trauma rehab doctor to come and talk to us and hopefully give us a better understanding of what areas of her brain are damaged and what those areas functions are. We have been told that nobody will be able to give us an accurate diagnosis of what limitations she may or may not have, we will just have to wait and see what she can and can't do. This is obviously very frustrating for all of us and we will have to refocus our game plan that we discussed here in earlier posts given the current set of circumstances. We are trying our best to remain positive and strong for Maddie right now as well as into the forseeable future because that's what she needs.

Your continued support and prayers are greatly needed and very much appreciated.

Ann, Rick and Maddie

Well here we go again. It's 6:30, Sunday evening and Maddie's feeds have been dropped down to 28ml/hour and is sitting at the same levels on her meds as she was when we posted on Friday.

For some reason it would appear that she just can't tolerate the feeds. We don't know if it's the rate at which they are being delivered or the fact that the feed just runs continuously and her body has been so used to rest. Remember prior to this visit she would rest 4 hours between each feed throughout the day and rest all throughout the night.

She began showing signs of discomfort on Saturday morning and progressively became worse upto and including now. She is miserable, easily aggitated and next to impossible to console. There have been some questions raised about maybe she is just sick of being in the hospital and needs to go home. As her parents we have seen Maddie mad and showing attitude and we wish that were the case here. She is in some kind of discomfort and we need to figure out what the source of that discomfort is. She actually gets worse when we hold her.There has also been the question of why not just feed her the way we were prior to the hospitalization and we have raised that question ourselves; however when a team of medical doctors including lung specialists and ICU specialists stand at your child's bedside and tell you that based on the condition she was in upon arrival that they fear if she refluxes or vomits it could enter her lungs and we could lose her, well it's quite simply a no brainer. A 1% chance of somthing of that magnitude happening is not a chance we are willing to take. We have seen her vomit just from trying to make a bowel movement.

So early this week is not looking as good as it was on Friday. Maddie will be having a cat scan in the morning to check for any kind of abnormality in her head that could have been caused from the time that she was in arrest. We are praying that is negative. After that, we're not sure there are any more tests that can be done.

Sorry for the bad news, please keep the prayers coming.

Thanks and God Bless
Ann, Rick and Maddie Moo

Can you say Roller Coaster!

Don't get too excited but the words "take her home" were just spoken amongst Maddie's plethera of doctors.

We are cautiously (and I cannot stress enough, causiously) optimistic that she could potentially come home early next week.

What needs to happen:

She is currently at 35ml/hour on her feeds. She needs to be at a minimum of 32ml/hour in order to not dehydrate. So the plan is to see if they can steadily increase her feeds and have her tolerate the increases. They don't want her riding the dehydration line. As far as the meds for withdrawal;we can administer those at home through her feed tube, provided they can ween her down to an acceptable level over the next few days (she currently has them delivered via iv).

So keep the prayers coming and your fingers crossed. She has had a pretty solid past couple of days and hopefully she continues that trend over the course of the next 2 or 3. Please keep in mind we were in a similar position at this time last Friday, not with going home but with feeling she had "made the turn" and than the bottom kind of fell out so to speak.

Nice to see her progressing and prayers being anwsered.

God Bless all of you.

Rick Ann & Maddie.

NUTRITION & FEEDS

So prior to entering the hospital Maddie had her issues with eating, however we had her maintaining her weight all though we have known we need to get more into her(she just can't tolerate more). A normal day of eating for her would be 3-250ml feeds at a rate of 200 ml/hour. She would get these feeds with a 4 hour break in between. It has taken us 2 years to get her to that kind of volume and that schedule without having her throwup, and as previously mentioned we had her maintaining her weight for about the past 6 months which in our view is major progress. 100% of her feeds have been through a feed tube that was surgically placed directly to her belly when she was just a few weeks old. She basically has a button or port next to her belly button that has a tube going into her belly. We hook a line up to that button and in go her feeds. The problem with pushing more feeds this way is the risk of her refluxing and than aspirating (fluid or vomit in the lungs) which for her could be disasterous. during this stay they have inserted a new feed tube using the same port, however this one goes too her stomach as well as her small intestine. The idea or logic here is to bypass her stomach and feed directly to the small intestine thus eliminating any chance of reflux. This is not going so well foe her. So far they have only been able to get her up to 45 ml/hour but had to stop as she was in some obvious discomfort and couldn't even sleep. They have done what seems like a million tests from x-raying every bone in her body to a GI consultation to an orthopedic consultation to try and figure the source of her discomfort but to no avail. At one point we were actually hoping she had a broken bone or somthing since that can be fixed and we would know what's wrong. The thinking is that her intestine just needs to adjust to the direct feeds and it could take some time. Today she is up to 30 ml/hour, they actually dropped her down from 33ml/hour cause she started to get fussy within minutes of upping the volume.
As far as weening her off of the methadone and atovan (anti-anxiety), they have put that on hold so they can just concentrate on feeds. Fussing from the lack of one of those would just cause confusion when trying to figure out why she's uncomfortable.
GOOD NEWS is she is doing well on the regular nasal canula and is not far off from her O2 settings at home. A very good indication that her lungs have returned to her normal baseline.

On a side note, one of Maddie's Doctors used to live next door to my Gram Lippitt on Duerstein St. His name is Peter, however he went by PJ when we used to swim in Gram's pool together. What a small world. Anyhow, he and all the other Doctors have treated Maddie and us like there own family and have been relentless in trying to figure out what the heck is troubling Maddie. Some prayers for all of them would be greatly appreciated as well.

A thousand thanks again to all for your continued thoughts and prayers. We will keep you posted.

Thank you and God Bless
Ann, Rick & MADDIE

Hello to all, unfortunately we have found ourselves in the situation where it is necessary to keep all of you posted on the day to day progress of Maddie. We are sorry if any of you have been left in the dark, however it has been difficult to keep up with the hospital and our own home let alone phone calls and text messages. We will try to keep this updated on a daily basis and are extremely appreciative of all of your thoughts and prayers.
Just to bring all up to speed: Maddie was fighting a pretty nasty head and chest cold the first week of February that wiped out her twin the previous week like no other cold we have ever seen. Maddie seemed to be holding her own as we were able to monitor her through her oxygen saturation levels in her blood and her heart rate via the monitor she is hooked up to 24/7 at home. On Saturday February 7th she took a very sudden turn for the worse and it was obvious that we had no option but to call 911. She was transported to Children's Hospital and arrived in severe respiratory distress with collapses in both lungs. At some point while trying to insert a breathing tube into her she went into cardiac and respiratory arrest but by the grace of God and the hands of so many wonderful doctors here, she was brought back quickly.
From the ER she was admitted to the Pediatric Intensive Care Unit where she remains to date. She spent 13 days on a ventilator basically in a medically induced coma so her lungs could rest. She was diagnosed with septic shock, pneumonia and RSV. In between arriving here and the present she has contracted some other bacterial infections which were caused by the various stages of her treatment.
Where she's at now: While her lungs have recovered from all the above described conditions, it seems every day there is a new obstacle that she is fighting through. She is still being weened off 2 major narcotics that were necessary during the ventilator stages so withdrawal is a daily issue. She goes back and forth between constipation and diarrhea. She has just about completely regressed from the progress we have made with her joint contractures over the past 2 years so minor aches and pains from stiffness and the lack of movement are an additional daily struggle for her.
Her prognosis: This visit in some sick twisted way may have been a blessing in disguise. It has been our goal to get her weight and body thickness to a point where surgery could be performed on her back that would increase her breathing capacity. For the past 6-8 months her lung Doctor has been discussing a breathing machine (V-PAP) we could use for her at night time to eliminate the number of breaths she takes on her own thus reducing the amount of calories she burns. Along with the machine she would need a procedure done in accordance with her current feed tube that would bypass her stomach and feed directly to her small intestine, greatly reducing her chances of aspirating while on the V-PAP at night. Introducing her to both would have required a 2-3 week hospitalization which we were reluctant to do. She has been introduced to both during this visit, but there have just been to many outside contributing factors to tell how she will handle either of them. We just need her to get her back to being Maddie before we will be able to tell. We are hopeful that once back to 100% she will tolerate both and be able to gain the necessary weight to get her to surgery.
It has been made clear to us by the Doctors that her body growing and her lungs not being able to grow in ratio are a concern so we really need her body to accept the V-PAP as well as the new feed tube as we are running out of options. So to answer the question that so many of you have been asking "what can you do, or what do we need";PRAYERS. Pray that her body accepts what they are trying to do for her. That's all we can humbly ask for.
The current focus is on her feeds. For some reason she is not tolerating them and she has the Doctors stumped. They try something different every day in attempt to rule out one thing or another. We are waiting for a GI consultation today to see what kind of input they may have. We're keeping our fingers crossed that they may add some insight to her current feeding issues.
As for the boys, they are doing good. They miss there sister however we're pretty sure they don't mind the extra wii time they are able to extract from there overly strict Grandparents and Aunts (just a joke Grandparents and Aunts, we are not judging).
On that note, how truly blessed are we to have the family that we do. They deserve so much recognition for the support they have given us. In fact, support does not even come close to descibing what they have done and sacrificed for us. We are so thankful for the help from everybody and while it is important for all of you to know and pray for what Maddie is going through, it is equally important for all of you to know and pray for what our day to day support team is going through as well. In a 24 hour period Maddie is only without family for an hour or two at most. Grandma and Grandpa get Nate off to school in the morning and hit the hospital in the afternoon (everyday). Mema is at the hospital every single night after her own work day and some days has gone from the hospital to our house or vice versa. Aunt Carrie's family has grown by at least one (Nathan) as they get him from school after spending mornings and early afternoons with Maddie (everyday). Aunt Carrie and Mema have even stayed overnight at the hospital so that we could have a couple "normal" nights as a family. Aunt Chrissy, with 9 month old twins, has been our daily lunch delivery girl at the hospital (even though I know it kills her to serve me, he he he) and is managing Ann's astronomical text message bill-Thank you. I know it's taboo to only mention a few names, and again all of you have done so much, we just feel that sacrifices of such magnitude ought not go unrecognized and they are critical support and should remain in all of our prayers so that they may remain strong and healthy throughout the duration of this saga. We need them!
I apologize for what surely sounds like a grim post, however it is reality and we just want all of you to be updated so we all know what we're praying for. Thank you again for your love,prayers and support and God's Blessing to you all.

Ann,Rick,Maddie,Nate,Zack,Luke and Louie

ENJOY THE PICTURES!!!

Well it’s only been 5 months since our last update, so we apologize for the wait; however we have a solid excuse: We are limited on time. Maddie is making tremendous progress as far as movement and stretching goes. She tracks things visually very well and has become pretty accurate with reaching out and touching what she sees. Her movement is still limited in many areas however her therapists as well as Annie and I are encouraged about her current progress and hopeful for future progress. She is still on oxygen, and several of her Doctors feel a strong possibility that her breathing problems are related to her lung structure which is twisted due to what they think could be arthogryposis (no one has officially diagnosed this, however all her symptoms would point to that) or scoliosis. Her back and chest areas are the main focal point during physical therapy: We are hoping that these areas can be corrected through PT, if not she will need surgery on her back which would be done when she is 5.

Speaking of surgery, we started to see an orthopedic specialist in Cleveland named Dr. Armstrong, who is highly regarded by every doctor we currently see. We first went and saw him a couple months back and he spent almost 2 hours with Maddie, looking at her and explaining to us what he thought and what her options are. He will be performing surgery on her feet some time in September and than on her hips 6 months after. We are extremely confident that Maddie is in good hands and will get the best possible care with Dr. Armstrong.

Despite all of this Maddie is just a beautiful little girl who smiles and just recently began to laugh in her own crooked little way. The life in her eyes is dominating, which leads us to believe she will handle whatever obstacles life throws at her for a long time. She is quite simply awesome.

While we encourage Maddie to move and touch as many things as possible, we are doing the opposite with her twin counterpart, Mr. Luke Lippitt. He is at the opposite end of the spectrum. He began to crawl just roughly a week ago and gets into absolutely everything he shouldn’t, and always has a smile on his face when doing so. He is awesome, and Annie and I both agree that we have never seen a baby who smiles as much as he does.

Nate and Zack have to be the best 2 older brothers on the market right now. They play with and comfort both Maddie and Luke daily and have been a big help for Annie and I. We are seemingly always asking them to grab this or get that or could you give me the wipes Nate, or Hey Zack could you find Luke’s binki for me. They smile and love that fact that they can contribute. When they’re not doing that they are fighting, or arguing or playing well together: It all depends on the day.

So there you have it, 5 months of review in 5 paragraphs. We will try to stay on top of the site and keep all of you informed as to Maddie’s progress and surgery. Take care, God Bless and we appreciate the continued prayers and support.

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