Lily's journey to now

I decided to write this summary of the events of Lily's short 5 years of life to bring a little more context to those who are trying to piece together the recent events and what brought her to our hospital trip earlier this week.
(I am writing this having had very little sleep over the last 3-4 days so please give some grace in regards to grammar, spelling, etc. as you read on!)

I wasn't sure how much I should share or wanted to share since this is Lily's journey. I know my girl and I really believe that she would share all of it with anyone who wanted to know her story. She is the most loving, sweet and joyful child I have ever met even despite all the trauma she has suffered. I have had many conversations with Lily about why she is in the hospital now and that we are communicating with all of our family, friends, church family, school friends, neighbors, etc. about all that is happening and how everyone is thinking about her and praying for her. She is very aware of all of it I know that it truly means the world to her. She is a very sensitive child and even though she has some challenges, she without a doubt is 100% comprehensive and engaged in conversation.

Let  me start at the beginning - her beginning. Lily was born in China. Nanjing, China to be exact. It is a beautiful picturesque part of the country, but for her there was very little beauty in it. Though we are unsure of what she suffered during her first year of life, we know it was not good. When she was found by authorities abandoned she was malnourished, ill and unable to move on her own. She was transferred to an orphanage after no one came forth to claim her and spent a year there, before her file was sent to our family to consider for adoption. Despite how it sometimes is portrayed in movies, tv dramas and even often via other adoptive blogs, vlogs, etc. it was a very scary and intimidating process. Once we had her file we met with the head doctor at Children's Hospital International Adoption Center to go over the extensive medical file she had. We were adopting an "older child" from the Waiting Child/Special Needs list so we knew she could have a multitude of challenges and were doing our best to be prepared for those challenges by reviewing them with Dr. Staat before "accepting her file". We knew that not only did we have to try and decide how many medical challenges we could handle, but how would that affect the other 4 children we had at home and their lives. After speaking with Dr. Staat we knew Lily had a critical heart condition that surgery was necessary sooner than later for her survival. In addition, she was not very mobile for a child her age and had a "questionable" brain MRI.  While they saw some "areas for concern" on the MRI done in China there was nothing conclusive so we had to decide if mental delays, etc. were something we thought we were prepared to handle. After gathering all the facts from Dr. Staat and praying to know how we were to move forward we accepted her file and began to make arrangements to travel across the globe to bring home our little girl.

I could tell you that it was all exciting and again we looked like you see in the Lifetime movies and while we WERE excited, we were also very scared and didn't know what lied ahead for us and for this precious little girl. When we met Lily in China for the first time on September 1, 2014 she was 2 and 1/2 years old. She was handed to us in the lobby of a hotel in Nanjing where she proceeded to scream bloody murder and try to get away from us. Blessedly at that time she was fairly weak and had the strength more like a 1 year old so we were able to hold her until she calmed down a few hours later. For 2 days she wanted nothing to do with Derek and would only allow me to hold her and I had to carry her everywhere because we quickly learned that her physical complications had been downplayed in her medical reports from China. Not only was she unable to walk, but she couldn't even crawl or pull herself up to standing. If we did support her when standing her little legs would only hold her up about 10 seconds at most. We learned so much about Lily during that 2 weeks in China. Mostly we learned that she was super sweet and had gotten very good at surviving in what had been a very cruel world for her thus far. By the time we flew home on September 11, 2014 we were hers and she was ours. She clinged to me, Derek and Tanner (her oldest new big brother had traveled to China with us to bring her home) at all times.

Over the next few months after bringing her home we worked to get her well enough for her heart surgery which took place in December of 2014.  The surgery was very routine and she came through it perfectly with great results. Within months and lots of physical and occupational therapy she was standing while holding on something and was able to walk some with assistance. That turned into her being able to take a few steps on her own and eventually more and more until she could walk with assistance almost anywhere and for longer periods of time. Within the first year home she began to be able to climb up stairs, get herself in and out of bed and even started feeding herself. That led to being able to go to preschool where she could get more interaction and therapies and eventually to being able to go on the potty like a big girl. She has tried to keep up with her big sister (older by 1 month! ;), Gabby, almost since day 1 which has been such a great thing for her physical development. Through all of this she has remained mostly non-verbal other than "ma", "da", "hi", "bye" and maybe a couple of other words that her family understands but most others would not recognize. Regardless, she tries very very hard to get stronger and catch up developmentally every day. Through all of this she has seen numerous experts at Children's hospital with no answers as to why all of this is happening to her. As time has gone on the conversations that were once centered around "developmental delays" have begun to shift to a potential "syndrome" or other neurological or genetic disorder.
Since often children who have not "caught up" by around age 7 probably are not going to we had decided to work on a plan for her that would include going down the very time consuming and expensive road of genetic testing. The plan was that we would begin that process during the summer between preschool and her starting kindergarten which would be the summer of 2018. We had pretty much resigned ourselves to the fact that she more than likely has some limitations due to a genetic issue and if we knew that going into her "school years" it may help us know how to work with her and assist her better.  In the meantime we just continue on with her occupational therapy, physical therapy and speech therapy as we would regardless of what genetic tests may or may not show us.

That brings us to the events of the last several days. Friday morning, November 18, 2018 started like any normal Friday morning. Everyone has school on Fridays except Lily, as preschool only meets Monday-Thursday.  So after walking her sister, Gabby, to the bus stop we went back home to play like normal. Lily was her normal healthy and happy self. No signs of fever, pain or any other sign of anything being "off" or any illness. At 11am her nanny, Kelsy, arrived so I could get ready to run out to some appointments for the afternoon.  I came home around 3pm to get ready for the afternoon plans and Lily was napping at that time, as she always does. Typically Lily wakes up sometime around 3:30, but often she just stays in her room or bed and plays while she wakes up. If she hasn't come out by 4pm we always go in to get her and wake her up if necessary. Kelsy and Gabby came upstairs at 3:55pm to do just that. It was then that Kelsy saw she was having a seizure and yelled for me to come quick. I ran in and gathered Lily into my lap and sit her up to keep her from choking as she had thrown up and was thrashing her arms, legs and head back and forth.  Her teeth were clenched and though her eye lids were open her eyes were darting back and forth and she would not answer my many desperate please for her to look at me. I literally thought I was going to lose her right then and there are she was clearly hyperventilating - and if you have never seen anyone actually not be able to get sufficient air and hyperventilate let me tell you that it is not like I have ever seen in a hospital show on tv or a movie. It was so so much worse. I was just certain I was losing her because of how desperately and violently she was fighting for air and was unable to unclench her teeth or open her mouth to help get more air in. Thank God that my very fast thinking nanny called 911 right away and stayed on the phone with them until she heard the ambulance pulling up outside our home. She also kept me up to date on what she was doing to try and keep me calm. I was hysterical and honestly don't remember much of it except desperately trying to get Derek to answer his phone although I knew he was in an appointment with a client. After dialing him about a half a dozens times he did pick up the phone and was luckily in the area so he was able to rush home before we left in the ambulance.

Holding her on my lap after the ambulance arrived the EMTs made several attempts to get "rescue meds" into her in order to stop her convulsions, but had difficulty getting her still enough to inject them. Once they got those stopped they began assessing all her vitals and prepping to get her into the ambulance. As she was loaded in the ambulance they began having to resuscitate her and eventually had to intubate her to keep her airway open and get more oxygen into her body as she was not breathing on her own. We were not even off of our street yet when I heard the medical team in the back (they had me sitting in the front of the ambulance) call for air care and tell the driver to pull off at Good Shepherd church so a helicopter to land to pick us up.  After what I was hearing registered I realized how much trouble she was really in and how close we were to losing her. I just prayed and prayed and prayed.

The air car unit arrived and loaded us up. Lily and her medical team in the back and me and the pilot up front. Derek drove and met us at Children's trauma center. Upon arriving at Children's they brought her in to a trauma bay and proceeded to work on stabilizing her. They allowed us to stand right outside the open doorway and allowed us to keep an eye on her and kept us up to date on everything they were doing and why. There were 15 people working on her including 4 doctors consulting on next steps as everyone worked. After about a half an hour they stabilized her enough to take us up to the Pediatric Intensive Care Unit. We arrived in a room around 5:30pm were Lily remained intubated and sedated. They ordered numerous tests checking for toxins, bacterial infections, brain swelling, abdominal issues (since she had been repeatedly throwing up since the seizures started, etc). Finally at around 11:30pm they were able to remove the breathing tube from Lily's throat. While this was a HUGE victory once the tube was removed she began throwing up. She was throwing up while otherwise being unresponsive and was causing her to choke as she was unable to sit up or fully spit it out of her nose and throat. Of course, the fear was she would aspirate on the vomit. It was at this time that the decision was made to insert a tube threw her nose and into her stomach to compress the stomach and keep all the stomach fluids coming out through the tube.

Lily finally woke up and became responsive for us around 4:30am on Saturday, November 19th.  She opened her eyes and began being able to answer our "yes" or "no" questions by nodding and even was able to say "dad" in response to seeing Derek sleeping on the pull out chair in the corner of the room. It was a miracle and such a blessing. We still had no results or answers in regards to why any of this had happened. She was getting electrolytes via IV, as well as, antibiotics and an anti-seizure medication through all of this.

Throughout the day on Saturday there were teams of doctors and nurses in her room from different departments almost continuously trying to assess her and come up with some collaboration of how to move forward. During this time she received another CT brain scan and an ultrasound of her abdomen since she had continued to throw up every hour or so despite not eating and having the NG tube and had been complaining of belly pain.  They were also able to determine through urine and blood tests that her electrolytes were dangerously low even though she had been receiving them via IV and they had not been low upon admittance. This could potentially account for abdominal pain and lethargy. This also led to many other questions about why this would be happening. They began high dose sodium and potassium drips and try and balance those back out.
The rest of Saturday was pretty awful.  After being alert and awake for a very short time Saturday morning, Lily fell back into a very lethargic and unresponsive state. At about 5pm we witnessed another seizure, albeit much less intense than the one that brought her here since she was currently on seizure medication. They administered a rescue drug to stop the seizure after about 5 minutes. They then ordered another and more long term EEG test (she had done a 25 minute one earlier in the day). As the nurse from neurology was setting up the electrodes for this 24hr EEG Lily began to have another seizure. They discontinued setting up the EEG and rushed her down to get another CT scan in hopes they may see a change in the brain.  They had to administer another rescue drug in order to stop the seizure. Once back up in her room around 10pm, they resumed setting up the long term EEG. Lily was able to rest some after they got that test set up.

Sunday I woke up at about 5:45 when I heard Lily stirring in her bed. She was alert and awake and even smiling when I went to her bedside to check on her. I let her know that daddy and I had both spent the night with her and he was still sleeping in the corner. She proceeded to sit up, point to daddy and even told her nurse where her daddy was by pointing and saying "daddy".  It was an amazing thing to see after watching her have no ability to use any of her limbs almost at all up until this point.

Throughout Sunday we continued to meet with doctors and discuss next steps and thoughts as to what treatments to follow up on. Her electrolyte levels were back to baseline, she had stopped throwing up so we were able to remove the NG tube and she continued to be seizure free and was able to get the EEG taken off. We began talking with specialists from the Genetics department about seeing if original seizure could have been triggered by a genetic condition. Neurology and Genetics are now working closely with us to try and get some answers since we have exhausted nearly every other possible channels.
Derek went home Sunday evening to be with the other kids and get them off to school in the morning. It was hard to be left here at the hospital alone with my thoughts and fears, but I couldn't imagine sitting here with anyone either as I was too exhausted to think straight let alone have any kind of conversation. I guess that is one of the awesome things about Derek - I get energy and emotional support just being in the same room with him even if neither one of us can get up the energy to talk. He is "my person" and can make pretty much any unbearable situation bearable. Up here on the Neurology floor they only have to check Lily every 4 hours so we were able to get two good stretches of mostly uninterrupted sleep overnight which was absolutely heavenly for both Lily and me! The night and most of the day today have gone super fast and we are rounding our way to the finish line to get home I just know it!

So today have discussed that they did find a small "area for possible concern" on her last CT scan so she went for an MRI today, Monday, November 20th so they can get a better more detailed picture of the brain to determine what significance what they saw may have - if anything.  It seems to be the most viable path to answers since we have known that she could, and most likely does, have an underlying genetic condition. It is most likely what has kept her from being able to catch up fully with her peers developmentally or being able to speak. The doctors feel this may be something that has taken until now while her brain has continued to grow and mature for significant issues, like the seizures, to develop.  I pray that we are able to arrive at some definitive answers over the next few weeks as it will take time for all of the genetic testing to confirm or deny anything they may be thinking unless something definitive and obvious can be found on the MRI from today. While there won't be a way to "fix" anything we find that is genetic in nature, it will still hopefully give us a better understanding or her challenges and allow us to embrace what the future may bring for Lily and for us. We will hopefully have those answers later today after the Neurology team is able to look over and discuss the film.

In the meantime, Lily is growing stronger. She is coming back around from the sedation she underwent for the MRI this morning and is drinking and keeping the fluids down which is great news. If she continues they will allow her to eat maybe tonight for dinner time. She is so excited that ALL of her brothers and sister will be able to come see her in her hospital room tonight. She misses her family desperately! This afternoon we are resting in her room and have no more testing scheduled as of now. It is a welcome break for sure! 

We do not know what the future holds for Lily or our family, but I am eternally grateful that she is still with us. I know that is not always the outcome of such a series of events with our precious children.  And while in prayer today I was reminded that if we had not been sent her file and had not decided to move forward with her adoption that she may not be here today. The chances of her receiving sufficient medical care or maybe any medical care if she had remained in China and had this event there would have been slim. It is almost too much to consider. I was also reminded of how many little children just like her will never get a chance at having a family and growing up surrounded by love and acceptance. It certainly puts things into perspective and helps to snap me out of it when I start to feel sad for Lily or get scared or overwhelmed about any of the challenges that we may be facing in the future.
Regardless of what the answers are that come to us about Lily over the next hours, days and weeks, she is still the same sweet soul that can light up a room with her smile. She is the same little girl who just 3 short years ago couldn't perform almost any physical task regardless of how small and now she can do almost anything her siblings can do even if it means she does it at a little bit slower pace. She is the same little girl that has endured so so much tragedy in her life yet smiles through it all and overcomes everything thrown at her with her joy firmly in tact. She is truly an inspiration to me, Derek, her siblings, extended family and anyone who has ever had the privilege of getting to know her.  All of her nurses, techs, etc. that have worked with her during her few days here so far have all remarked at how incredibly sweet she is despite everything they have had to do to her. She is a strong girl too and continues to fight to get stronger every hour.

Please know that your continued prayers mean everything to us and we are so grateful for each and every one of you reading this.  Our specific prayer right now is that she can get strong enough to go home as soon as possible and that we will have clear answers for how to proceed in her future and in regards to any potential health concerns we may be dealing with and avoid any further seizures.  Please join us in that prayer and in believing for it to be answered. Praising God for all the answered prayers thus far!

Much love,
Jessica (aka Mom :)