Lillie’s Nominator writes: “
I would like to nominate Lillie for your photo shoot of children with medical issues. Lillie was diagnosed with Lymphatic Malformations in her bilateral upper extremities, pelvis and chest wall. She also has malformations to the fingers and toes on one hand and foot. Not only will these malformations require numerous surgeries in her future but they will also require both specialized clothing and shoes as Lillie continues to grow.
Lillie was born prematurely at almost 32 weeks on May 24, 2019. She weighed 8 pounds and 7 ounces. Of this weight 3.3 pounds were attributed to the masses that Liliie was born with. After a very difficult delivery via C-Section she was taken from her birth Hospital to Egleston Children’s Hospital. It was here that she stayed for the next four and a half months in the Neonatal Intensive Care Unit. Shortly after her birth Lillie had a breathing tube put in and he remained on this tube for the first 2 weeks of her life. After having this tube removed she was placed on oxygen for the next 4-6 weeks until she was able to breathe completely on her own. During this time she had an IV (Picc line) placed to provide IV nutrition later followed by a nasogastric tube that went from her nose down through her esophagus and into her stomach. Lillie still receives all her nutrition/breast milk via a feeding tube.
During this time Lillie attempted to eat by bottle but because of the weight of the masses in her chest and the reflux it caused she had to have a nasogastric tube placed. Her feeds were then given via pump through this tube which she would keep in place at all times. Her parents have been taught both how to place and manage this tube until Lillie is able to eat solely by mouth. During Lillie’s stay at the hospital she received more than 25 Sclerotherapy treatments to try and reduce the size of the multiple masses on her arms and chest. The sclerotherapy treatment requires a breathing tube be placed for 24-48 hours. Then a medication is injected into the mass, let sit for 1-2 hours and pulled back out in hopes of pulling off extra fluid with it. The goal of the repeated therapy was to shrink the mass. After multiple treatments Lillie is now able to space them out until she is able to have the next several surgeries to try and debulk the mass when she is older.
Throughout Lillie’s hospital stay and after her discharge home she has had problems with the large masses becoming infected and or developing cellulitis requiring antibiotics for treatment. At times she has been able to stay home and be treated with antibiotics by mouth and other times IV antibiotics with a hospital admission have been required. At this time Lillie is growing and thriving at home. She has absolutely no idea that she is not the “norm”. Each week she works with both an Occupational and Physical therapist and has quite the medical calendar of appointments to maintain. She has worked very hard and learned to roll over, army crawl, sit up and scoot with her walker. She is such a trooper and never quits trying! Lillie has determination like no other. Nothing seems to be out of her reach. On top of her determination is her personality and smile. When she smiles you just can’t help but to smile back. She doesn’t just smile, she uses her whole face to bring you in. And, she loves to make silly faces! Lillie Bug is just the sweetest little girl.
Lillie still has a very long road ahead of her with many surgeries in her future. She will face numerous obstacles that I know she will tackle head on and come out on top. Her parents are amazing and Lillie could not ask for any better as they are just as determined as she is and could not love her any more than they already do. She is by far their fairy princess already and this photo shoot would mean the world to both them and myself! I cannot think of anyone more deserving. Lastly…I think she would be an amazing fairy for you to photograph!”
Lillie is definitely an inspiration. Can you imagine at her age having so much weight on your arms? I’m sure once her tumors have shrunk she’s going to end up being a strong as a bodybuilder. Lillie also definitely has strong opinions on everything. Unfortunately it took me a while to find the right dress to fit her. I thought I had several options, but all but one ended up being somewhat small in the chest area thanks to her tumors. Because we went through two dresses before getting to the one she’s wearing, like any 18 month old child, she was pretty much done with us before we even started. Each of the smiles in these pictures are not for me. They’re for her Nana. Nana got called on FaceTime a little bit under halfway through the session, and Nana saved the day. I wish I could say it was through some skill of my own that we got these amazing smiles, but alas it was not. Hahahahaaha. Lillie has the most amazing color of hair. It’s not quite red, it’s not quite brown.. it is more like a rose gold. It has a shimmer to it like her head is faintly metallic. I think she really is a fairy in disguise.
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