OK… I know many of you are friends and family and have LIVED this journey with us. You can fast forward to another post because this is a CATCH UP of sorts. I need a place that has the condensed story of Kyleigh Morgan to bookmark. For all intensive purpose those who have joined us on our journey recently rarely understand the gravity of our situation. I often receive questions about Kyleigh and our journey and I am never afraid or offended to answer any of them.

The story of Kyleigh Morgan begins long before her birth. In November of 2005 I went for an ultrasound. Because my OB is a doll and I whine mercilessly he allows me to have extra ultrasounds. Truthfully I was just DYING to hear someone say she was a girl! The very day I found out I was pregnant with her I went to Strasburg and bought the tiniest purple dress I could find. Not even visibly pregnant I told the saleswoman that I was pregnant and having a girl. She asked how far along I was and I said proudly 8 weeks. She looked puzzled and I knew she was trying to figure out how on earth I could know that it was a girl. I simply explained to her that this dress… was my FAITH gift. It was the physical emobodiment of my faith that my daughter was in fact a daughter. She kind of chuckled and went on about covering it in its fine plastic. She explained that I could exchange it in the even that I needed “a different” color and I told her that would not be necessary!

I had the ultrasound I had begged for and returned home. Then the phone rang. My cell phone at that. When I flipped it over I saw it… Dr.Y… and it was HIS cell number. My interest was peaked and I wondered why he was calling me. I felt my chest tighten when I heard HIS own voice on the other end. He explained that the U/S had revealed a Single Umbilical Artery (2 vessel cord). I immediately asked him how that could be? The Ultrasound tech had said everything “looks good”. Now it is not good all of the sudden? He wanted to send me to a more advanced Ultrasound doctor. He also explained that in 95% of these pregnancies this is of no effect and the babies are born perfectly fine, no complications and normal births. I guess 5% Kyleigh’s nickname began way back then. Yes… as she habitually does, Kyleigh fell into the OTHER 5%.

I called Troy and said COME NOW… and he did. I laid on the Ultrasound table for more than two hours that first time. There was silence as people fluttered in and out of the room. One person would start a sentence and the other would follow with … “hmmmm…”. I managed to fight back the tears for those first few hours which seemed like and eternity but no time at all in the same breath. The ultrasound was so intense that I had bruises on my belly. I hung on every word that each person said. “What does that mean?” They rarely responded with much more than “we are just looking”. This was my third child. I knew they were doing more than looking.

When they moved me to ANOTHER room, I officially LOST it. This could NOT be good. The flurry of emotions and and fear that ensued is something that I cannot describe with word. ALL of the doctors were called in to conference. Yet again… NOT good. It seemed like the whole thing was going from bad to worse! Finally one emerged into the room with a diagram of a heart. I thought I was going to vomit. In carrying that diagram I knew he was coming to tell us what was WRONG, which only confirmed my fear that something WAS wrong. He explained that, as best they could tell, Kyleigh was missing a LARGE portion of the structures in her heart. She had several different defects but somehow, her heart was NOT stenosing (dying or getting smaller). With the amount of structure missing from her heart they could not explain why her heart was not failing because for all intensive purposes it should have been. I knew. Way back then… just like i know now. My daughter has a purpose in this life. Her Heavenly Father has given her a testimony to share with the world. She has a story to tell about the MIRACLE of her own life and until she can tell it herself, I am here to speak for her. I will NEVER stop signing the praises of a God who heals and comforts and restores. I have experienced EACH of these and they are each miraculous and wonderful!

They recommended that we have an Amnio THAT DAY to check for DiGeorge Syndrome and Trisomy 13 (neither of which are compatible with life). With the combination of issues they had serious questions about her viability. On the brighter side, I would know with 100% accuracy if she was a girl! I have always managed to find the happy things about her situation.

I remember sitting in Dr.Y’s office after that horrible 4 hour process. I remember him being completely speechless as he explained how NORMALLY Single Umbilical Arteries are no big deal. He even pulled out his medical text book to look up DiGeorge as he had no idea what it was. He was stunned, we were stunned… we all cried. As I stared out that window and watched the snow begin to fall I remember EXACTLY what troy was wearing. I remember my khackis and strappy black slingbacks. I will never forget how the tears stung my face as they dripped off my chin and hit my thighs. I will never forget how the residual cold from the window seemed to echo the chill in my mind and bones. It was a cold day. Very cold, dark and painful. The skies seemed to echo that back to us and I knew that it must have been a cold, dark and painful for my Heavenly Father too. It was as if his tears were falling through the snow and I knew I was not alone. Never alone.

We were then presented with the most awful scenario that I had ever envisioned until that point. Dr. Y explained that if we wanted to terminate we would need to make that decision, likely, BEFORE the Amnio results return. I was 18 weeks at that point and the amnio usually takes 4-6 weeks. I know that both he and Troy said they would support my decision but all I could get to come out of my mouth was “I can’t… I can’t do this.” I think that Dr. Y thought that meant I wanted to terminate because he started to get the business card of a colleague out of his desk. What I meant was I could not choose life or death for her.

That day I don’t know that I made a conscious decision to choose life for her as much as a I made a decision NOT to choose at all. This was the perfect princess that I had prayed for and wanted more than life itself. I guess that day was really the start of my fight for her. Something rose up in me that day and I chose to never again be afraid. Never again feel helpless. I would never again – NOT CHOOSE. I got online and began to research the best and worst scenarios. I had 10 million ways in my head knowing that it could play out in any of those ways or in none of them. It was at that point that I chose to fight for her. Surgery, we would do it. Better doctors, we would find them. Different states, we would drive, fly, go by boat if we had too. I would stop at nothing. God had given her to me to protect with all of my being and I intended to do just that. To this very day and until she draws her last breath I will fight for her. I will fight for her health, her life, her love and some kind of normal. As long as I have life in my body… I will never stop fighting for her.

The pregnancy continued, closely monitored by 5 different specialists. They were all on call on July 13, 2006. Her birthday was a day unlike any other. Even in preparing for “the worst” we had no idea what was about to happen. At 8:20 in the morning I gave birth to a beautiful but tiny 6lb 10 oz Ky via c-section. Did you know that in Hawaiian “Kai” means beautiful? She was definitely that! When Dr. Y pulled her out I will never forget him saying.. “Where did you come from? You are tiny!! You don’t belong in this family!” True. Both of the boys had tipped the scales at nearly 9 lb!!!

Immediately after birth she did great. She did not require interventions, resuscitation or even o2. She even went to the NORMAL nursery. All of the specialists dispersed back to their respective locations breathing a sigh of relief that she was “fine”. That all changed when the nurse attempted to take her temperature, only to find that she was minus and Anus. Yes you read that correctly… there was no hole. We kind of thought that was standard packaging! On top of the heart, which we knew was not right, and the SUA, she now had NO hiney hole. We were totally floored.

I remember Troy’s comical prose on the matter “ummm… her heart looks fine, but she has no butt.” ME: “WHAT???? How can you have no butt? You had better be kidding me.” In my mind I envisioned a baby with no butt CHEEKS. I had not gotten a good look at her with it being a C-section so I had no idea what this would LOOK like! I had to laugh. What else is there to do? My kid came out with NO BUTT?!!! How many people do YOU know with no butthole? (all IA parents- you guys don’t count in this answer!) At any rate Ky would require a set of three surgeries to correct this matter, the first of which being a colostomy that would provide life saving means of excreting her waste until her anus could be repaired. Fine! Surgery it is. Where do we sign the papers?

And then it happened. My normally smiling and upbeat Dr. Y emerged into the recovery room with a look on his face like I will never forget. I close my eyes and I can still see it and feel the rush that it sent down my spine. He came to explain to me that because of her heart (which we had found to have a larger issue than originally thought), her anus and the Single Umbilical Artery the NICU docs immediately labeled her VATER or VACTERLS Association. He also told us that many of these children had a TEF (tracheal esophogeal fistula) and that they were currently trying to get a tube down Ky. If the tube did NOT go it would mean she had a TEF. I asked him point blank “So what does that mean? How do we fix that?” It was at that point that he just looked at the floor. He said nothing more because they came to wheel me into the NICU to see her. I hung on that last look he gave. It was ominous and unrelenting. It was the “hopeless” look.

We were told that our delivering hospital did not have the means to care for her so she would need to be transported to the Kentucky Children’s Hospital. This was devastating for us but would be the best decision anyone has ever made for her!

That evening, sometime after 9 pm, I received a phone call from Kyleigh’s surgeon. At one day old my daughter had “a surgeon”. He politely introduced himself, in his thick Philly accent, as Dr. Joe Iocono. “Dr. Joe” for short. Even through the leftover spinal and major narcotics I must be a hard nose. Joe reiterated to me that there was NO need for me to come to KCH. He “instructed” me to stay at Baptist and he would call when the surgery was done. He told me that Ky would be fine and he would take care of her. Almost three years later, Joe would know better…. LOL. I think he knew better back then too.

I immediately hung up the phone and called Dr.Y. I told him that I was leaving with or without his help. I told him I could check myself out AMA or he could release me and give me the meds I needed to feel better. Troy recounted to me recently that I was on the phone at nearly midnight giviny my poor Dr. Y the tenth degree “If you don’t let me out of here with drugs… I will leave… I will leave without your help… You can either give me the drugs and help me or I can go without it.” I have to laugh because I can SO hear myself saying it. Even though I don’t “remember” it… I wish I had a video to laugh at. He explained that he could call UK and release me to an OB there and I would be in the same hospital with Ky. Even having just had a C-section I was NOT interested in being in the hospital. I wanted to be with Ky no matter what that meant.

We agreed upon a 3-4 am checkout. That would put me at 36 hours postpartum. That was of course conditional upon me promising to call his cell if at any point I was NOT ok. Agreed. I went to sleep and really it was worthless. Troy snored. Finally at 2 am I got up and started packing. By the time 3:30 am rolled around I woke Troy up and made him pack the stuff to car. At 3:57 am I went to the nurses station and asked them to page the on call to let me go. I wanted it to be one minute past 4 am when I walked out that door. I knew that my scripts were on my chart and all I needed was someone’s signature! 15 minutes later I was pacing and a sleepy Doctor emerged into the hallway to release me. I nearly ran to the car.

We stopped at a 24 hour pharmacy to have my meds filled and get something to drink and then we were off to figure out the world of KCH. What an experience that would be. By the time we parked (in the old structure for those of you KCH’ers… you know what I mean! UGH), it was 6:30 am and I KNEW shift change was coming at 7 am. With every ounce of my being I ran as fast as I could to that NICU.

At 5 minutes until 7 am we were standing by her bed and were able to meet her surgeon, Dr. Joe Iocono, in person.

I have to take a brief break in the story here to explain Dr. Joe Iocono to the world. Not that Joe needs explanation or couldn’t speak for himself but from a parent’s perspective. I know that I am not the only one who feels this way so I speak for so many parents who are truly thankful to him! To all who have googled his name and landed here… trust me you want to continue reading. We had no clue what an influence he would have in our lives and how he would FOREVER change Kyleigh’s. Yes… I know nostalgia eventually sets in, but someone who has saved your child’s life on MULTIPLE occasions… there is nothing nostalgic about that. It is pure admiration and gratefulness. I cannot express with words the amount of respect that I have for this man. Dr. Joe is this amazing, larger than life person. His voice is as big as his countenance and his reputation proceeds him. Yet this amazing surgeon is often reduced to giggle voices and sharing his pens with my tiny princess. It is quite amazing that in the same breath he can bark orders at his “flock” and make Kyleigh laugh. Kyleigh is pretty terrified of him, truth be told but she will eventually grow to appreciate him as much we do.

That first day we had no idea that Joe would become a great friend and guiding light for us on this journey, but from the moment we met him we knew he was different. Not the same political, guarded aires as the others. He was honest and had this odd sense of balance, brash and calm. I didn’t know how to take him for a while and nearly fired him at our 4 week appt. Joe has made me cry on more than one occasion, has been right more times than wrong and somehow undertsands exactly how to get me to shut up (which is a hard thing to do).

Most of all he has ALWAYS listened, always cared, always been there. Late nights, weekends, holidays, vacations, birthdays, he is there. I tell Joe that he went on a one man mission to renew our faith in “the system” and he succeeded. Our life would be vastly different without Joe, and his FAMILY who have enriched our lives so richly and blessed us with their sweet spirits and laughter. I truly TRULY believe that God has placed him and his family in our lives to bring us such joy and comfort. I thank God for Joe, Susan, Amanda and Lauren on a daily basis.

To those considering Dr. Joe Iocono for your child… you will NEVER find a more kind, knowledgeable and skilled surgeon. He is a keeper. There are very few doctors out there who truly take a vested interest in their patients for the long term and he is one of them. My daughter has been to the best specialists and surgeons in the WORLD and there is NO other Dr. Joe. He is simply the best. Period.

Back to the story. The next person we would encounter was Ky’s anesthesiologist, Dr. Aru Reddy, who is still very dear to us. Dr. Reddy promised that she would take care of Ky. She hugged me and told me that she would be fine. I knew in that moment that she would. Dr. Reddy has been through the ringer with us. I think she would laugh if she heard me describe my child as HARD to anesthetize. Ky is nearly impossible to GET down and KEEP down. Maybe that is why she is still alive but it makes for very eventful times in post op. God knows she would not be my kid if she were not a fighter but sometimes I wish I could tone that down a little for her. I have heard stories come out of Ky’s OR that just made me chuckle and say “That’s my kid”. Kyleigh seems to astonish those who are not “used to” her. But for those who are … the select few who “get it”… we are forever grateful. We are more grateful that we had a God who knows JUST what we need before we ever need it! Who places these amazing people in our lives to lead and protect us.

Ky did relatively well for that first surgery but did require some pain management. (that was just the beginning of “pain management issues” for her… HAH!) She had trouble regulating her temperature due to her poor circulation (yet another indication of things to come). It took a week to get her warm enough to take home.

Then came another of “those days” when we were able to be in rounds when the results of the Spinal MRI came back. I was standing next to her bed, all of two days postpartum, when the doctor looked me straight in the eyes and said “she has spina bifida occulta”. First of all the words Spina Bifida triggered my gag reflex and I informed him that if I did not sit at that very moment I was going to puke on his shoes. Second… Occulta… I failed my medical terminology and that words sounded hugely ominous to me! The more common term was Tethered Cord. Among her other issues she would likely need Neurosurgery. For those first five days it just seemed like the diagnoses kept piling up yet our daughter laid there looking tiny and perfect. How on earth could such a tiny little body look so perfect on the outside yet have so much going wrong on the inside?

After 5 long days (which was actually on the short side I hear!) we were able to take her home. The next few weeks would be nothing short of pure hell for us. Our baby was a lot sicker than we knew or would admit. Weekly cardiology appointments brought on Stage 1, then Stage 2 heart failure… which brought more medications and issues. They said that Ky would HAVE to gain weight (from 6 lb to 10 lb minimum) in order to have the surgery she needed to repair her heart. The structures of her heart were too small at 6 lb to try the surgery on. But how would we ever get her to 10 lb when we were LOOSING weight.

At 8 weeks she was labeled “Failure to Thrive” and we were admitted. We were actually relieved. What we had been doing to get our baby to eat was nothing short of inhumane and most of what we did get down came back up. Her diagnosis was GERD. No formal testing was done because they did not feel that the condition of her heart was stable enough to proceed with testing. During this stay, our emotions were put through the ringer. We were asked over and over again the SAME questions. They continued to have us recount the many ways in which we had tried to get her to feed. We were third time parents, both of us more stubborn than the other, TRUST ME… if I said we did everything… we did EVERYTHING. There seemed to be a small portion of the “flock” who wondered if we were neglecting our child. I managed to overhear this in the hallway one morning and had a complete breakdown over it. I think it was Joe who saved us from that WAY back when. I was insulted and hurt by the whole thing and swore off Kentucky Children’s. Obviously I unfairly judged them as I consider that place HOME now! (Sorry KCH… you know I love you but those “flocklings” were crazy!)

They placed an NG tube, which we came to love. It was a welcome source of nourishment and relief for us. After 4 more long months we MADE it to 10 lb (she was supposed to be 12-13) and they decided that her heart could not wait any longer. Our open heart surgery was scheduled for two weeks later…. the last day of February 2007 in Cincinnati. Once again it was the calm before the storm.

One of my dearest friends, Julie, flew in from Utah to stay with my boys so that they could stay at home and be as normal as possible. In my soul I KNEW that we would be in Cincinnati for at least 2-3 weeks. Our surgeon,Dr. Pirooz Eghtesady, told us it would be 2-3 days most likely but I could FEEL it. It was one of those things I just KNEW. As time drug on many more of my amazingly wonderful friends would come to my rescue me from myself. My friend Cristy flew from Florida and Kimberly drove from Illinois. Heather came from Indiana, Susan from Ohio and so many more I can barely count!

The surgery drug on for almost 9 hours and there were “complications” that led to major rhythm issue for Ky Post-op. She ran a fever of 106 and was febrile for days. She ended up with a major sternal staph infection and an 80CC pocket of fluid BEHIND her heart which could not be removed without ANOTHER open chest procedure. So on March 10, 2007 she went back to the OR for a 3 hour procedure to remove the fluid. All told we spent a month in the CICU. She had two open heart surgeries and a bronchoscopy in the ICU room which led to us nicknaming her 5% Kyleigh. Kyleigh has a condition that is commonly known as a Tracheal Bronchus (Bronchus Suey) PIG LUNGS. She has the same structures in her lungs as PIGS which is only found in 5% of humans. The airway team in Cincy had everyone and their brother piled into our ICU room viewing the films and scopes because this is something that they may not see again for another year or two! HAH! That’s my girl.

We will never be able to thank the staff at Cincy CICU enough. They are truly family to us! Because we got to know the staff so well they invited us to participate in the CICU Family Centered Care board. We were honored to be able to share our experiences to better the “hospital life” of every family who spends time in the CICU and A6C. Once a month we drive back to Cincy and walk the hallways that we walked for a solid month on our way to the Heart Center. Its always bittersweet to realize how far she has come!

After her open heart surgery she was sent home with a central line, antibiotics and all was well. Ky began to grow like a weed.
In August 2007 she had her Posterior Saggital AnoRectal Plasty (surgery to create her anus) and our dear Dr. Joe spent a month getting the correct medical license in the state of Ohio to be in the OR with Ky for this surgery in Cincy. It was a relatively uneventful 6 hour surgery and we spent a short 5 days in the hospital for that one. Although this surgery showed us early indications of her kidney issues we really had no problems and were home by the end of the week just like Dr. Levitt promised!

By October we were hoping to move forward with her MRI and Tethered Cord surgery. At 8 weeks she was diagnosed with Tethered Cord and we were advised to have it de-tethered as soon as possible. With the eventful year of Colostomy, two open hearts and butt surgery we had to putt off the cord. In hindsight that was not the smartest decision we ever made but no one really laid it all out to us. This simple MRI, would turn into an ordeal… rest assured there is very little with Ky that is ever NOT a big deal!

We were unable to proceed with further MRI studies because Ky had eaten a 14 mm screw….. looking back to the xrays it had been there in AUGUST when she had her PSARP. A pretty horrible procedure allowed us to remove the screw without surgery and we were won the battle for the MRI. We sought the opinion of Dr. David Frim in Chicago because throughout my research on Ky’s “issues” I had come to believe that she had a Chiari malformation. The MRI proved I was right. TC and Chiari. Ultimately we did not feel that Dr. Frim was “the doctor” for us and returned home with the weight of her new diagnosis. With her already have showing symptoms of both Chiari and Tethered Cord we knew our time was ticking to find a surgeon. The stress and pressure of that was unbearable. If one of the “the best” was not it… who on earth would be? I was crushed. I thought that Dr. Frim was the Wizard and that as soon as we got to Oz things would be okay. Much like Dorothy I realized “there’s no place like home” and found a great Neurosurgeon right here at KCH, Dr. Bob Owen.

In the middle of all the MRI craziness… we started to notice little things that made me believe that she may be having bladder spasms. We went to see a Urologist in Cincy and found that not only was she having bladder spasms but she had a completely neurogenic bladder, which would require cathing for life, had Grade 3 Kidney reflux in her left kidney and a duplication anomaly of the emptying system and Y ureter. Her bladder pressure were off the charts (4 times the amount that causes kidney damage) and her capacities were double the normal amount. This was a problem. We began cathing every 3 hours (Q3 in the medical world) and began prophylactic antibiotics for the kidneys. All in hopes that we could “save her kidneys”… who knew…. obviously not us… again.
We returned home defeated and at our wits end. Wanting to move forward and help Ky feel better our journey returned us to where it began… Dr. Joe and UK. Are you starting to notice a pattern here? Yes… Joe has managed to be around for every major decision about Kyleigh’s health and MOST of her surgeries. I felt like I was spinning my wheels and flinging mud everywhere and was getting nowhere fast. That feeling of helplessness that had overcome me in the beginning of her diagnosis in utero was starting to creep back to overtake me yet I refused. I called Joe and told him we had no reason to wait on the colostomy closure and we needed to move forward now. I could not allow everything else to stall our plan to get her “normal”. I needed her FIXED now more than ever. Continuing to find issues I wanted to know that she could be FIXED. I still didn’t understand that words like “normal” and “fixed” are relative terms. I was about to find out.

The week before Christmas 2007 Kyleigh had her colostomy closed and that began the newest leg of our journey. We were in the hospital from Dec. 19-24 and when we were released I KNEW that something was wrong. Its just one of those things. I think Joe could tell that I “knew” because he emailed to check in with us before we could even GET home and then several times on Christmas day. This was the trip that confirm what an unbelievable gem we have found in him. Beyond being a Doctor I know that he has the “Kyleigh” sense. On some level this man connects with my daughter in a way that very few others do. He KNEW… like we KNEW.. and that is a special and very valuable thing.

Several times I was scared that we would end up back in the hospital because things were NOT right… but Troy insisted that we enjoy Christmas at home. I let it slide until a week later when on New Year’s day I knew… this was going from bad to worse. So I again called Joe. He said to bring her for fluids but he suspected that she was just a little dehydrated. She was but the interesting thing is that her transverse colon was largely dialated. That earned her a one way ticket to admission. The next day she was hydrated and the swelling in her colon was receding so in spite of my “feeling” we went home again. Less than 24 hours later I again called Joe and told him that she was vomiting, dehydrated and NOT RIGHT. He said we could stay at home and meet him in the AM or come NOW… but either way we had to come in. At 10:30 pm on a Friday night I decided I need a some sleep before we headed into another hospital marathon. This time I was warned that this was for the long haul! Joe made me promise that I would bring her in immediately and call his cell if she puked again. She did… at 2 am but there was NO WAY I was waking him up at 2 am to tell him that she had puked. I cleaned her up and put her in my bed to make sure I would hear her if she was aspirating. I texted Joe hoping that he would sleep through and find the message in the morning. That tactic failed miserably as I was startled awake by the ringing of my cell phone at 4 am only to be followed by an huffy Joe who demanded that I get to the hospital NOW. I explained that she had not puked in a few hours and that I needed to pack, clean etc. I think his exact words were “Well get your butt up and do it now… and be at the hospital at 7.” He said he would meet us there no later than 7 am. To my credit.. Joe is RARELY on time. He told me to call him whenever we were leaving the house. When I called (finally) at 8 am Susan (his beautiful wife) answered and relayed message to him in th shower…. I think he was mad but I had done what I thought was best for all parties.

She was SO badly dehydrated that we were barely able to get an IV in and yet again the colon was dilated. That began a 17 day journey that ended us with more questions than answers and ultimately we opted to have a g-tube placed because Ky had lost over 3 lb in a few weeks. With that weight loss it meant that she had gained absolutely NO weight in one year. In order to be able to keep her hydrated while we were figuring out what was going on we thought the tube was the best answer. This is a decision that we will never regret. It has been teh single best decision we have ever made for her.

After the mic-key g-tube she took off like a weed again… in 6 mo she gained 6 lb and grew 5 inches! Success… and then in true Ky fashion we hit rock bottom… vomiting non stop, weight fluctuating, random fevers, pains, major butt burns and rashes… I just didn’t buy that NOTHING was wrong…

In the middle of it all we knew that we needed to go ahead with the TC surgery… she was not talking, having trouble walking.. starting show the tell tale sign of Tethered Cord Syndrome so in March we had the de-tether. 3 days in and out, even with an overnight stay in the ICU due to some major PAIN issues post op. But through it all, Kyleigh took off walking, talking, eating. Balance issues subsided, pain subsided and she enjoyed the first few months of summer.

I kept pushing the GI issues. I just know when something is wrong with Ky and we found that she was once again refluxing. We are still working on that but as of TODAY we have an explanation for the butt blisters… Ky may have a rare skin disorder called Pemphigus which causes her to blister. We think it may have been induced by extended use of Captopril (for her heart) and the symptoms brought on by triggers of allergy for food or to the ampicillian that she was given for he heart prophylaxis.

The summer brought a motility specialist, Upper Endoscopy which revealed no Eosinophilic disorders, Impedence probe which showed moderate to severe Reflux and still left us with many questions. Allergy testing showed that Kyleigh is allergic to absolutely NOTHING. This was quite the shock seeing as how EVERYONE in our family has major allergies. It was yet another tangible miracle and we thank God for that.

The summer of 2008 continued with more Urology testing and studies. The end of July brought on an 8 week bladder and kidney infection which seemed to morph each time we treated it with a different drug. She was hospitalized here in Lexington and then released to Cincinnati. She had TWO Cystocopies which at first showed a very grim picture of her bladder status. The second- just two short months later- looked drastically different. During this admission we also discovered that Kyleigh’s kidneys had been gravely affected by her Urological issues. Our mission to SAVE THE KIDNEYS was not working. Her right kidney was functioning at only 30% and her left at 70%. Total she still has 100% combined which is all we can ask for but we live with those kidney knowing that at any time they could turn the other way and we could end up with a very sick child on our hands.

Due to her kidney status she was having labs done every week or two for a period and trying to STICK Kyleigh is like trying to take blood from a steer… not good. We attempted to put in a PICC line to make draws easier. She had had a PICC before and it was fabulous. 3 hours into a 30 minute procedure the PICC was not to be had. We made the decision to go for a Broviac. 6.5 total hours in the OR Joe again stepped in to save us and gave her a beautiful line.

One month later, in October, our family had undergone a huge upset. It was the most horrible month of my life and to make matters worse I accidentally CUT the central line. We took a ride in the ambulance to KCH and were able to patch the line but it only lasted a week. Ultimately Joe decided it was time for the line to go. I was completely torn up. I had fought SO hard for that line and watching it go was like watching everything I had worked for be thrown away. It was an easy surgery and we went home the same day.

Kyleigh miraculously and unexplainedly took a turn for the better. Since those horrible weeks leading up to the Broviac removal she has not drawn a sick breath. She had one bout with dehydration in January but we were able to hydrate her at home and avoid admission. Right now a little something is brewing with cloudy urine and fever, hydration issues and a few other things but we are handling those here at home and couldn’t be happier to say that it has been MONTHS instead of weeks since we were last admitted!
The most recent adventure demonstrates why we always have to be on guard with Kyleigh. She started having some respiratory crud. I gave it a few days because it was the weekend. By the time I called on Monday to get an appointment for her to go in they were full and said I would have to go to the after hours clinic. We ended up not seeing our main pediatrician but someone else. He prescribed Omnicef. In under three days the medication all but shut down her intestines. Even a little thing like an ear infection can be a life altering thing for Ky.

Each day is a new adventure. Even with as much as a history as we already have, her journey is only just beginning. The one thing I know about my daughter is that she is a miracle in 30 inch form. God has blessed us with her life and health. He has given us grace, patience and strength to make it through the past three years. He has blessed us with people. Amazing, wonderful, kind and compassionate friends, doctors, nurses etc. He has placed his hand so STRONGLY on her life that I have no doubt that she was sent here to change the world. I know that God has big plans for this baby girl, that for all intensive purposes, should not be alive. There is no logical reason how she survived her heart surgeries. There is no medical explanation as to why she is suddenly well now.

Me… I don’t need a REASON. I know why. I have seen a miracle and in meeting my daughter… you have too.

So stay tuned. We will be back the Urologist for re-evaluation in the next month then off to the Nephrologist again to check the kidneys. She will also have her Cardiology visit with echo which we do twice a year. So please be in prayer that each of these goes according to the PERFECT plan!!!

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