Princess Lily's Journey: Lily is THREE and TRACH FREE

Saturday, July 23, 2011

Lily is THREE and TRACH FREE

Congratulations Team Lily! We've Done it! Another milestone has been reached. In the beginning of this year Lily and I set a goal to SOMEHOW get her LTP approved and performed and have her recovered by her 3rd birthday so that she may start school this fall and move on from this period of her life. With the love and support and encouragement from Team Lily, with the Lord on our side, and through the strength and will and determination of Lily . . . We DID IT! I don't know how I could ever express how proud I am of Lily. She is my hero. She is amazing. She is Lily! Aren't we all so lucky to get to know her and be a part of her life and the true miracle that she keeps PROVING that she is?!??!

Speaking of the proving . . . .Lord have mercy this kid doesn't know how to do anything the easy way. Maybe that is partly my responsibility since Lily was born under the black cloud of CRAZY luck that seems to have followed me through my life lol, or maybe the complications and scary days and weeks are to show us all and the world what a true miracle Lily is. (Dear God, if you happen to read blogs I'd just like to say I COMPLETELY GET IT! Lily is your miracle and you have a special purpose for her. I will not forget it and do not need anymore constant reminders. With love and respect, your child, Lily's mom)

Needless to say we have had a rough go of it and we are not out of the woods yet. There is still some concern about her grafts holding and at this point her airway is far from stable as has been proven by several scares since the surgery but we are hopeful and positive that it will continue to improve. In other medical news Lily is seeing a cardiologist for irregular heart rate and bradycardia episodes. We'll see the cardiologist again in a week to discuss diagnostic testing. She has also recently had a follow up with her neurosurgeon who was worried about signs of increased ICP and we are waiting on his interpretation of the CT to determine if she will need surgery. Please keep the prayers coming. I'd love for Lily to be able to start school without a big bald spot from a surgery on her shunt. (Please know that is of course not the biggest concern, but she is a princess so . . . :-) Lily is also back in with her physical therapist and working really hard to get back to where she was before surgery. Last Friday we went and got Lily fitted for her wheelchair. As soon as we go through the OKHCA process of getting that approved Mia better watch out because Lily is coming for her! LOLOLOL I can't wait to see Lil wheeling around the house!

Other than all the medical stuff and running back and forth to OKC, Little Rock, and Tulsa for Lily's appointments we have been trying to get settled back in at home. I never would have thought that we would be even more busy following the LTP than we were with a vent/trach baby, but boy oh boy are we ever busy!

There is one more thing that I really want to share with all of you before my time runs out and the girls once again demand my attention. So many of you have taken a vested interest in Lily and our family and all the various struggles. So many of you have reached out and helped through donations, love, support, and prayers. There are not words enough to let each of you know how much you are appreciated or how each of your gifts was a blessing. It seemed that when things were the most desperate and we had no idea how we were going to make it through just one more day we would receive a gift that would keep us going. You guys are amazing. I know that there is nothing that I can do that is BIG enough to repay each of you. Instead of thanking you with mere words I have thanked God for each and every one of you. Instead of attempting to repay you I honored each and every one of you and your giving spirits by giving to those around us in need at Arkansas Children's Hospital. We met and came into contact with many families that were in a PICU situation for the first time ever and were able to comfort and reassure them. The baby in the bed next to Lily was a micro-preemie with a prognosis similar to Lily and we were able to provide hope to her family. I'm sure that most of you saw the pictures of Lily during her PICU stay at Arkansas Children's Hospital and noticed that she was in custom made hospital gowns. Those gowns were made for Lily by our friend Robin at a boutique called MeMe's Designs here in Coweta. I had spoken with Robin a few weeks prior to Lily's surgery about what was coming up for Lily and had asked her if she could make Lily some pretty dresses instead of her having to wear hospital issued gowns. In these situations its the smallest things that help you hold onto some normalcy and sanity and make the whole situation seem a little better. Robin with her loving giving spirit immediately tackled this project and on the day I went to pick up Lily's custom designed hospital gowns and matching bows Robin with tears in her eyes refused to let me pay her a single penny. Robin, if you are reading this . . . Lily's gowns were, on many days, the only thing that got me through the day. I want you to know that your gift to us went even beyond making our days a little brighter. One horrible night a precious little angel about Lily's size was admitted from the ER in the bed next to us. I was alone in the room with Lily. She was sedated. At that point and I was unable to let go of her hand, so I sat hunched at her bedside, talking to her, and loving her and hoping she knew I was right there with her. Lily and I sat there in silence, praying and crying as the little girl in the bed next to us went to heaven. I was sitting there with Lily in tears, feeling that baby's mother's pain and praying with everything I had. Asking God if there was any way for me to help this mother . . . . I was able to help her Robin, I was able to help her with one of your gowns. The nurse that was assigned to Lily that night stuck her head in the door and said she needed to talk to me. She then told me a little about the angel next door and told me that her clothes were torn and covered in blood and asked if she could have one of Lily's gowns and hair bows for the girl. When the mother who had had to leave the unit when things got bad was able to come in and hold her baby and say good-bye she was not greeted by the sight full of reminders of her angel's traumatic end, but was instead able to love and hold and kiss her daughter for the last time all dressed up in my FAVORITE of Lily's custom gowns and matching hair bow. It made a difference Robin. You have made a difference. Each and everyone of you that have taken an interest in Lily's journey have made a difference not only for me but for everyone Lily has encountered.

Thank you all! Words are never enough but please know that from the bottom of our hearts, we thank you!

2 comments:

Princess Lily GraceJuly 23, 2011 at 11:04 PM
Oh, and just as a side note . . . Lily had a royal wedding themed birthday party since she is such a royal! I do NOT typically dress like that :-)
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lisatillmanAugust 19, 2011 at 12:23 PM
I loved your outfit and you are intitled to dress ole way you like! So glad to see Lily is doing well. Her spirit and determination seem to have come from you Tara. What a wonderful mother and role model you make for little Princess Lily destined to be Queen Lily. She and your family are always in my prayers and I think of you often. Keep up the good work I can't wait to see how far she goes! And, yes Mia I think of you too and how fantastic you are as well.
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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

Saturday, July 23, 2011

Lily is THREE and TRACH FREE

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Princess Lily

Lily Smiles