Princess Lily's Journey: The Journey Continues

Monday, April 25, 2011

The Journey Continues

Late last summer I called Lily's thoracic surgeon to schedule yet another trach revision procedure in hopes that this time we would get the news we had been praying for and that Lily would soon be able to come off the vent and have her trach removed. At that time I was informed that the surgeon who had followed Lily from the very beginning was no longer practicing in the state and there was as of yet no one to take his place. Though it was hard to see that as anything less than a tragedy at the time I have come to see what a blessing in disguise this turn of events was. For more than two years it has felt like we've been spinning our wheels with Lily. While she continued to grow and develop cognitive and motor skills we were just nowhere closer to getting her trach removed than we were the day it was placed. Being without a surgeon set me on a frantic search to find someone to take care of my Lily bug. Fortunately I happen to have a very dear to my heart friend that has been through this all before us and she was one of the first places I turned for help. (Thank you from the bottom of my soul Sabrina, Nelson, Will, and Ajay Edgeman. Will has been our inspiration from day one, and your family has leant more encouragement and support than I can ever thank you for! I love you all like family!) From the Edgemans I learned the name of a surgeon who had pioneered just the procedure that Lily needed to forever be finished with her trach. In November of last year I began the process of obtaining referrals and insurance approvals to take Lily to Cincinnati Children's Hospital under the care of Dr. Robin Cotton. Unfortunately Lily's insurance denied this venture. After months of appeals and struggle to find the funds necessary to get Lily to Cincinnati accompanied by incessant prayer, another door was opened to us. The Edgemans had also told us about Dr. Gresham Richter who was currently practicing at Arkansas Children's Hospital, but who had also performed the surgery I was fighting to get approved for Lily, on their son Will when he was doing his fellowship under Dr. Cotton in Cincinnati. Lily has been under the care of Dr. Richter since December of 2010 and is scheduled for a series of extensive surgeries that will enable her to live trach and vent free on May 3, 2011. Lily will potentially be in the hospital for anywhere from 2 to 6 months. The only way to make this work for our family was to try and sell our home in the Tulsa area and move to Little Rock for the duration. This is why we are asking for help at this time. Unfortunately our home has not sold which means that we will be trying to pay for travel, lodging, and food expenses while in Little Rock for Lily's surgery and recovery, as well as trying to maintain our home in Oklahoma. As many of you know I have been able to support my family by working for the home health company contracted to care for Lily as Lily's nurse. Since Lily will be an inpatient at Arkansas Children's Hospital for her surgery and recovery she will not be eligible for home health services and I will therefore be without any source of income. I am going ahead with this venture on nothing more than blind faith. Knowing that the Lord has brought us this far I can only assume that he will provide the means necessary to make this happen for Lily. Please know that prayers are ALWAYS appreciated, and any donation that you can make will help immensely. I plan to use this blog to keep all of Lily's supporters informed of her progress on this latest journey. On days that I am unable to post updates Team Lily founder and member, and one of my very best friends and supporters in the world, (Miss Shel Shel as Lily calls her), Shely will give you all updates. Again thank you from the bottom of my heart and soul for being a part of Lily's miracle journey. God Bless you all :-)

5 comments:

Jocie's MomApril 26, 2011 at 5:35 AM
What an incredibly story. I am truly inspired by you and Lily and i'm absolutely positive that everything will sort itself out. You're a blessed family :)
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Will and Ajay's MomApril 26, 2011 at 6:36 AM
May 3rd!! That is coming up really fast! I am so excited, scared, and faithfully will be praying for Sweet Princess Lily and her Mommy! You guys will make it through this! I know it is so hard, and I know you both are strong enough to do anything that is thrown your way. It's just like in the NICU, take one day at a time, enjoy each and every moment, cry, laugh, and pray like your life depends on it! I am so glad that you are getting to do this surgery and I know that it will make such a Huge difference in her life! I love you guys and will be praying for you big time! If you need ANYTHING at all you better let me know! I am always here for you both! Sabrina
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Lora L RobertsApril 26, 2011 at 12:34 PM
Hi Terra
This is Lora Roberts with Oklahoma Family Network. I'm going to attach Lilly's blog to Jeremy's so I can keep up. Medicaid approved her to have the surgery at Little Rock? Call me when you can I have some resources (918-227-1797), there is a per diem amount, mileage reimbursement. Also can you apply for SSI for Lilly since you have no income? Is there a RMH nearby that you can stay at? I also have realtives that live in Little Rock that I could contact and see if there church could help provide some support to you and yours....
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Jen HApril 26, 2011 at 1:18 PM
I got to your blog for the first time today from Lora's and I just wanted you to know that a friend of mine has a friend who is a social worker for Arkansas Children's Hospital. My friend recently sent me an email from her friend about a program at ACH where family can fly free or at a reduced rate to ACH through Southwest. You should definitely ask the hospital about that program! The social worker's name is Samia Johnston. I don't know if that helps, and it's kind of vague because that's all the email said, but I hope you can get that benefit! Good luck with your sweet Lily girl!!
Jeneen Holland
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lisatillmanMay 4, 2011 at 12:41 PM
I am so glad to hear that Princess Lily is getting this long awaited and much needed surgery. I have always been so inspired by her as are the people that have been touched by her smile and her spirit. Her surgery will give her wings to get about anywhere she wants without the equipment that supports her now. She will fly like a butterly that just burst forth from its cocoon she will fly and be able to see the world in a different light. I have been blessed to have watched her from the time she was born to the present day. The pictures of her and the stories about her that were shared with me touched my heart. She so deserves this surgery. She has overcome so many obsticles and has done it with the determination of an Olympic athlete going for the gold. And, Princess Lily does it with a smile. Lily has a wonderful and dedicated mother (Tara) and a suppot system that has been her rock. Princess Lily deserves to have this surgery and her family are a deserving family that are in true need of assistance. Please pray for Lily and give what you can to help. Go for the gold Lily I know you will do it!
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Lilyana Grace From the Beginning

From the very first moment I learned of Lily's existence I knew that she was a special blessing. I had been waiting and praying for Lily for a long long time. I knew in my heart that I was supposed to be a mommy so through years of struggling with infertility I tried not to lose hope, but instead kept praying and remembering the encouraging words passed on to me by a dear friend - "God doesn't say no. He says yes, not right now, or I have something better in mind for you" What I couldn't understand at the time was that God was indeed preparing me for the "something better" He had in mind for me. I spent my short pregnancy mostly on bed rest. There were days when the fear got the best of me and I wasn't sure I'd ever know this precious miracle that I was carrying, and on those days I had the support and encouragement and even sometimes the swift kick in the hind end I needed to suck it up and be strong and faithful. By the time Princess Lilyana was born on June 26, 2008 at just 24 weeks gestation and weighing barely a pound, Team Lily Grace was firmly in place ready to help Lily overcome any obstacle that stood in her way. Within seconds of her birth Lily was intubated and whisked away to the NICU in an incubator. I didn't get to see her and due to the critical nature of my condition I wasn't able to go see her for several hours. I remember being wheeled to the NICU for the first time and being completely overwhelmed by the sights and sounds. I was terrified, but then I laid eyes on my tiny little Lily already fighting for her place in the world. She reached out for me with her teeny little hand that didn't even cover the end of my finger and at once I knew I was home. I was Lily's mommy. I was right where I was supposed to be and everything was just as it should be. For someone who hasn't been in that situation it may sound ludicrous to say that it was a happy time, but it was. Don't get me wrong in the nearly 5 months that Lily spent in the NICU I rarely left her side for so much as a bathroom break and every second of every day was fraught with some new worry, some unforeseen medical complication threatening to take my Lily from me, but we were together. Lily and I bonded in a way so special I don't even have words to describe it. I got to watch my baby grow and develop in ways that most parents don't. Add to that the simple fact that I still have my Lily after having watched so many other NICU parents leave without their angels, and I consider myself one truly lucky and blessed Mommy! For the first few days of Lily's life everything seemed to be going remarkably well. She was on the ventilator and had so many tubes and wires and monitors attached to her that you could barely see her frail little body beneath all the medical equipment. It was agony not being able to touch her and hold her. Having been born so early Lily's skin was not yet developed and every touch on her tiny little body was painful to her. I stood vigil at her side and through the walls of her incubator let her know that I was there loving and supporting her as I always and forever would be. I had begun to hope that Lily would simply bypass all the possible complications that I had been forewarned of and that we were simply in a waiting game. Waiting for her to grow and develop inside her incubator as if she were still in the womb so that when her "due date" arrived she would be ready to emerge into the world just like any other baby. That however would not prove to be the case. When Lily was just four days old the blissful little bubble that we were in did well and truly burst, and my world as I knew it seemed to be ending. Lily's neonatologist came to speak with me and told me that they had discovered that Lily had suffered bilateral Grade IV Intraventicular hemorrhages. For those of you who aren't well versed in medical lingo, that meant that because the tiny blood vessels in Lily's head hadn't had time to properly form the trauma of being born so early had caused those vessels to rupture and bleed inside her brain. While this is an expected complication of severe prematurity, having the bleeding be so extensive and on both sides of her brain meant that this was worst case scenario. As it was presented to me at the time this meant game over. The prognosis that followed was grim at best. I was told that Lily simply would not live, and if by some miracle she did live that at best she would have severe cerebral palsy, and at worst she would never walk or talk or smile or do anything more than exist in a vegetative state. I was told to go home, prepare the family, and make funeral arrangements, and that when I was ready the NICU staff would take the measures necessary to halt all life sustaining measures. That was the one and only time that I ever left the hospital to go home. Those minutes were excruciatingly long. I cried, I mourned, I prayed . . . and I just knew that this was not right! I no sooner got to my house than I turned around and raced back to Lily's side. I walked back into the NICU not knowing what I was going to do or what I was facing but certain that I was supposed to be there with Lily. You may think this is impossible or that it was the imagination of a desperate mommy who had just lost everything, but as God is my witness I walked up to Lily's incubator and she was there waiting for me. She had pushed her little mask that was shielding her eyes from the bili-lights off her face and as I walked up to her and murmured a greeting, for the first time in her tiny little life she opened her eyes and smiled at me. From that point on I vowed that if Lily was going to fight I was going to be right there fighting with her and I would NOT give up on her no matter how grim the prognosis. It is nearly impossible for me to recount the events of the days and weeks and months that followed as that was an extremely trying, stressful, sleep deprived time. As I think back on it now it's not the medical "stuff" that I remember. I remember laughter, bonding, and sweet moments with my Lily that I'll never take for granted. That's not to say however that there wasn't a vast amount of medical "stuff!" The NICU staff liked to joke that Lily must have somehow received a copy of, "Complications of Micro-Preemies" and was going to experience every single one of them as well as some that she made up just to prove to the world how special she was. Standing by her bedside one particularly rough day, Lily's doctor joked that she didn't need to "go for the gold" with every test they performed on her. To which Lily's Grand-J replied that she was simply trying to increase the degree of difficulty. There were so many unexpected, funny, terrifying, special moments throughout the course of Lily's NICU stay that I could probably continue writing for hours and have all of us in turn laughing and crying together, but for the sake of time and blog space I'll present you now with just the facts as best I can remember them. After nearly 5 months, 16 surgeries, countless medical tests and procedures, Lily was stable enough, and big enough at a whopping 7 lbs to be discharged from the hospital. Her list of medical conditions included the following: Bilateral Grade IV IVH's Hydrocephalus with a VP shunt Stage II Retinopathy of Prematurity Possible severe CP (to be diagnosed as she developed) Cardiac congenital anomalies including a PDA that had been ligated and an aorta that was wrapped around her trachea resulting in an aortapexy surgery Severe Subglottic and glottic stenosis Tracheomalacia Congenital malformation of the trachea Lily was to be discharged from the hospital on a ventilator with a pulse oximeter, an apnea monitor, a cardiac monitor, a feeding pump, and various other pieces of medical equipment. This presented our next battle. I didn't have medical insurance for Lily or any way to pay for her medical equipment and care. The doctors agreed not to discharge her right away to give me a chance to get funding and insurance lined up, but I was told that if I was unable to accomplish this that Lily would be institutionalized. This to me was unacceptable and nowhere near a possibility! Lily had not come that far and struggled and fought for months so that I could put her in an institution. Through the persistence of Team Lily, the kindness and generosity of strangers as well as loved ones, and the diligence of several political figures and state representatives I was able to bring Lily home. Having been home for going on 3 years now Lily has flourished in a way that again can not be described as anything less than miraculous. She has learned to crawl and pull up. She gets wherever she wants to go and into EVERYTHING! She has also learned to communicate and while her vocabulary and speech is still limited due to her trach, she nonetheless gets her point across very well! She is an amazing little creature that has what I call the "Lily effect" on everyone she meets. You need only to be in her presence to fall in love with and be inspired by her. She smiles and laughs while overcoming adversity that would put a grown man six feet under. Lily's baby and toddlerhood have been anything but normal. Although I tried to minimize the hospital feel, Lily's nursery was filled with equipment and monitors where baby dolls and princess things should have resided. There remains a sign on my front door warning potential visitors of an immunocompromised baby in residence and that unfortunately "The princess is not receiving an audience." I have painstakingly protected Lily at every turn Having an artificial airway meant that Lily was so susceptible to everything and with Lily she wouldn't get just a little sick. Every tiny little cold was life threatening to Lily. Very few people were actually allowed in the home and those people understood the rules and how cautious we had to be with Lily. Lily's social network became the staff at the multiple and varied specialist offices we've frequented. In the two plus years that we have been home Lily has only had to return to the hospital for trach revision surgeries and in that first year multiple visits accompanied with emergency surgeries as a result of VP shunt malfunctions. There were lots of times that family, friends, and loved ones could not understand why we had to be so sequestered and would even get frustrated and angry with me for being "way too overprotective." It was that obsessive amount of "overprotection" and a whole heaping pile of God's will though that has brought us to where we are today. Lily has not suffered a series of lung infections that trach and vent babies are so prone to, therefore her lungs are healthy enough that she no longer needs the ventilator to breathe! As a result of Lily's congenital airway anomalies and owing to the fact that she has had an artificial airway all this time, Lily must undergo an extensive airway reconstruction surgery, or possibly multiple surgeries in order to remove her trach for good so that she may be in public and go to school and learn to eat and talk and just generally get on with life! So that she may fulfill whatever greater purpose I am certain the Lord has for her! (For more information about Lily's specific surgeries and recovery: Laryngotracheoplasty with grafting tracheal resection soft tissue airway repair please visit the Cincinnati Children's hospital website specifically Dr. Robin Cotton and the aerodigestive center).

Princess Lily's Journey

Donations to help with medical/travel expenses are greatly needed and appreciated

Monday, April 25, 2011

The Journey Continues

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Princess Lily

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