Our clan! This was my husband's first time watching all five kids by himself....the bathroom is a good place to "corral" them I guess :)
13 days..... That is how long we have now been home. Amazing how life has changed. It looks so different than it did this time last month. And different is good even if it has been so overwhelming. We know that the feeling of being overwhelmed will get better for us and for Liliana who has certainly been dealing with way more emotionally, physically and mentally than we have. The kids have all been adjusting really well to having a new sister, too. Lily is just crazy about all of the boys and lights up whenever they walk into the room. She is less crazy about Gabby, but is warming up to her. Gabby has been so sweet to her and is obviously made to be a big sister.
Since arriving we now have some medical answers and explanations regarding Liliana which has given us a rest of thinking about it and imaging things on our own. For 3 weeks we wondered what the specialists would say and what kind of diagnosis they would give her. We knew whatever they told us was going to be okay and we would do whatever it took to help Lily overcome anything that she needed to. Derek and I both felt at peace before going that morning where the months and weeks leading up to this that wasn't exactly the case. I knew that God was in control of this and He would bring us through whatever He had brought us to.
The appointment went so well overall and while we learned that she indeed has PDA (Patent Ductus Arteriosus) which is a congenital heart defect that most often only effects prematurely born babies. After her general examination by the head doctor at our International Adoption Center here at Children's Hospital, it was determined that the condition for her is pretty substantial. There are many varying degrees of this with the larger holes obviously causing a much great risk for heart failure. The Dr. did give me the stethoscope to listen to her heart and it literally brought me to tears. I couldn't even hear the actual beating of her heart, but only this very loud whooshing and gurgling noises made by the blood rushing to her lungs before being regurgitated back into the heart. Thsi, of course, overworks the heart and causing enlarging and stress on the heart muscle. The best news is that it is suspected that oncce she has her surgery her heart will completely recover and return to normal!
Next steps for her heart is obviously surgery as soon as possible, but we have to meet with the cardiologist and do specialized testing to figure out if there are any other issues going on with her heart at this time. Often PDA is linked to other congenital heart defects. We are praying against that in Lily!
We will hopefully have the testing done and a surgery scheduled within a month or two as we also want to get her a little stronger physically before moving forward with such an operation.
During the 4.5 hour appointment we learned so many things about Lily, but were also left with many other heartbreaking questions that we will most likely never (maybe thankfully) have all the answer. Through talking with all the doctors we met with we did learn that the abuse and neglect she has experienced in her first 29 months has been pretty severe. It broke our hearts to hear what they suspect different marks and scars on her little body meant must have happened to her. We just cried and hugged her through much of the morning, but were able to come out on the other side knowing what a fighter she is and that we can now rebuild what was kept from her and start fresh now that she is home!
One thing we heard over and over again from each professional we met with that morning was how incredible her spirit was. They were amazed with how joyful and well bonded she appeared to already be. They felt it was remarkable that she was able to form an attachment to us so quickly given the difficult situations she has obviously been in before coupled with being over 2 years old. To have been through the things they know she has suffered they all felt that was quite a testament to her resilience and ability to love and still trust in the good and that will serve her so well in having a bright and promising future. Of course while there they did all her measurements to see where she fit on the growth chart. While her weight is certainly way under what it should be, the doctors were impressed that she has put on 3.5lbs since we got her just over 3 weeks ago! Her head size and height is right on the mark. While she is couple inches shorter than her big sis Gabby (who is actually short for her age on a standard American pediatric growth chart) she is tracking fine for her Asian descent :)
Developmentally she has been assessed to be around 14-16 months instead of her 29 months. The good news is that she is expected to catch up fully given some time and encouragement. Her brain literally just needs time to make the connections and receive the stimulation that she had not been given until this point in her life. Knowing what we know about how smart she is I know that she is going to surprise everyone by how quickly she "catches up" and jumps ahead of her true age :)
This morning I had to head back to Children's and have her Tuberculosis skin test read. Thank God that was negative! We also got the results from her stool samples where they test for intestinal parasites and those were also negative!! We had been warned that the percentage of kiddos coming from international adoption with positive result for parasites is very high so we had been very cautious at home and assumed that was a strong possibility for her. The fact that she doesn't have them is truly amazing and another miracle in all of this!
With all of those results and tests behind us we are feeling a big weight off of us and if Lily could understand any of this I am sure she would being feeling it as well! We will now concentrate on getting her more and more nutrition and ready for what lies ahead of her in regards to procedures to get her on the road to being physically whole. In the meantime we will continue to help her learn her basic tasks of crawling, standing and walking. She is continuing to build strength in her limbs and core which is imperative for her to be able to accomplish these actions. The Physical Therapist we met with at Children's was very optimistic that she will be able to do all of those very soon. Certainly after her heart is repaired and functioning properly. Much of her inability to do these things lies not only in her physical (muscle) strength (or lack there of), but also in her endurance. It is very difficult for her right now to strain her lungs and heart in the way it does when she practices walking for instance. When she tries she just sweats profusely (literally hair and clothes get wet!). We have been trying to help her with little things that are helping her to build her muscle strength so that it will be easier for her to achieve standing and walking on her own without straining her too much.
While Lily has many obstacles to overcome we know that she has already come such a long long way toward her complete recovery. She is finally with her family and she is getting more love than she knows what to do with - I can promise you that! She is now getting so much nutrition and she is flourishing because of it. Her fingernails which we didn't have to cut at all in the 2 weeks we had her in China have now had to be cut 2x since arriving home (less than 2 weeks!) and her hair is already growing like crazy and becoming much shinier and softer (her course, dull hair was caused by malnutrition the doctor explained to us). Her skin tone looks better, as well, and her cheeks are getting so full and round. And as I already mentioned, she has put on more than 10% of her body weight in just over 3 weeks which is amazing!
These pictures were taken after her nap on the same day that she had her visit to Cincinnati Children's Hospital's International Adoption Center...complete with bandages fresh on her arms. Still smiling!
She is one smart and resilient little girl and she has been made for big things and big miracles. Her life is already an amazing miracle and we just can't wait to see what else is in store for her. We just feel so blessed to be her parents and be able to witness what God is going to continue to do in her life.
Thank you for all your continued prayers, your letters, texts, emails and your comments on Facebook, etc. I just can't tell you how encouraging you all have been to us and how much it is truly needed and appreciated. While we know how blessed we are, we are also dealing with the real life struggles that this journey has brought our family. Knowing that we are not in this alone and that Lily is not in this alone truly makes all the difference in the world!
We love you all and thank you so much for continuing to follow along on this journey with us.
God bless!!
Jessica (and family)
Zoo time with my girls :)
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