Latest on Jiliang

Jiliang's Baptism ~ May 30th, 2010




One of my preschool students brought me fresh daisies last Thursday, so we both wore them in our hair.


I found her Baptismal dress in China - a white, satin, traditional Chinese dress. I was going to make her Baptismal gown out of my wedding dress, but as soon as I saw the dress in China, I knew I had to get it for her special day.








The Koeppes with Father Dan and Deacon Ray


Father Dan, Deacon Ray, The Koeppes (Scott, Jill, T.J. and Jiliang),and the Godparents: Sean and Lori Gleason


Her Baptismal Cake, made by my sister, Leah



Blowing Bubbles after church



Fun in the Sun at Grandpa and Grandma Harvey's Pool

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Jiliang is doing great! I am sorry that I have been unable to post recently. With going back to work so soon, trying to get Jiliang's medicines smoothed out and playing outside in the nice, warm weather, I have not had much time to get online at all. Work has been going well. I have 3 more weeks until summer break, which will be nice for catching up and spending some quality time with my kiddos. Jiliang has been adjusting to my work schedule, and she is very attached to Grandma Harvey, who watches her. My dad has also been helping out and getting T.J. off to school, so that Jiliang can stay home.

Jiliang was Baptized this past Sunday, May 30th. We had a private Baptism with just the immediate family and Jiliang's Godparents, Lori and Sean Gleason. We wanted to do a larger gathering, but with her recent surgery, she is not supposed to be exposed to a lot of people for about 6 weeks, and with us having to go right back to work after her hospital discharge, we opted for a stress-free day. I am not sure if it is 6 weeks post-surgery or 6 weeks post-discharge, since she had pneumonia in the hospital. However, she is doing marvelous, health-wise, and we are aiming to keep her that way.

Scott and I are participating in a Mott's Fundraiser with Jiliang this week. We are being videotaped and telling Jiliang's success story this Wednesday at the U of M Mott's Children's Hospital for the fundraiser that will be held in June.

Also, Jiliang had her first Memorial Day Parade today. My parents and my Aunt Barb and Uncle Rick joined T.J., Jiliang, and I (Scott had to work). My Uncle Rick is a Vietnam Vet, so I found it befitting that Jiliang was able to spend her first Memorial Day in the United States with my uncle, enjoying her newfound freedom. We enjoyed the commencement of Memorial Day tributes and singing in the cemetary after the parade.

Well, I will write more soon. Here are some recent pictures of Jiliang that my parents took this last week. I also have some great pictures of her and T.J. playing shortly after she came home from the hospital. However, I cannot find my camera adaptor to transfer those pictures to my computer, and Scott accidently threw away my camera cord. Therefore, they may be delayed, but I will get them up soon.

Jill :)



Playing in the flowers


Our back yard



Jiliang and Papa Harvey


Jiliang and Grandma Harvey

Updates on Medicines - Belated Post from last week

Yeah! Jiliang has gone all week with no problems taking her medicine. We were having some problems with her keeping down the main pressure medicine which she may be on for her whole life. She was gagging on the taste of it. I managed to crush it finely so it didn't taste so bad. We ended up giving it as a liquid, and give it to her before she ate. She still tries to avoid taking it, but I can deal with that part.

Keep Chrissie's Family in Your Prayers

There was another adoptive family that I was praying for while Jiliang was in the ICU. There daughter also had a complicated, risky surgery. However, she passed away today in the presence of her new family who loved her unconditionally. Please keep her family in your prayers. It breaks my heart to see another family suffer the loss of their adoptive child. They had their four-year old daughter in their lives for a mere 7 months, but Chrissie died in the security of her forever family: a precious gift that we often take for granted.
You can check out their blog at:
http://allarepreciousinhissight.blogspot.com/
Chrissie's mother had been a true inspiration to many people. Please keep this family in your hearts and prayers and they face tomorrow without the presence of their beautiful daughter, who touched the lives of so many people across the country.
Thanks,
Jill

Just a Quick Post

I just wanted to say that things are going very well for our family. Going back to work was very nice. Jiliang is adjusting to that. Her energy levels are good. Her brother, T.J., loves having her home. Jiliang and T.J. have been having a great time coloring, blowing bubbles, climbing trees, riding bikes, gardening and looking for bugs.
We just went for a walk up to the school in the wagon. She walked most of the way. She was really into climbing on the playground equipment and she tried to do some pull-ups and swing from some bars on her level. That scared me, because of her chest sutures, as I want them to heal properly. However, she didn't seem bothered by it. Kids just amaze me with their resilience.
I felt pretty comfortable having her play on the equipment with her helmet. We took some great pictures outside a few days ago, and she had her helmet on. I don't really see the helmet anymore, so I sort of forgot that she was wearing it.
I think that she had some hair loss in the back after waking up in the hospital. I assume it is because she laid on the back of her head for 2 weeks. I know that it will grow back. At least with the helmet, I don't have to be concerned about her hairstyle. The helmet gives me a huge piece of mind with her playing. I can actually relax and allow her to play without hovering too much.
Right now, the kids are finishing their play. They are both filthy from turning up stones in my flower garden. They love to turn stones and find crickets and roly polies. My girl loves her brother and everything that he loves. Who would have ever thought that she would love bugs, dirt, tractors, vacuums, and four-wheelers? She can't go Tom-Girl just yet, because I have a ton of cute dresses to put on her still. :) I hope she will be a girlie-girl and a Tom-girl.
By the way, we have been doing well on the medicine in-take since last Friday. Last Friday was the last traumatic medicine experience. Now, I learned to crush her pills finely and mix them with a lot of cherry syrup. She still turns away at the sight of every medicine syringe and puts up a fight, but at least she is getting the medicine down.
I will try to post some pictures soon. I am being beckoned to bathe my kids after a hard day's play. I will post again soon with updates and pictures. Otherwise, work is going well. I work until June 18th (late school year), and then I have the whole summer off. It is going to be a tight summer, financially, not working until the fall, so we are going to make the best of our yard at home. Pretty soon, we will be erecting a play structure, courtesy of a friend whose children outgrew it. Then, I will be converting a corner of my flower garden into a bug exploration and children's garden. I am a decent gardener, but not great with the landscaping part, so if anyone has ideas, please do share.
After this adoption and Jiliang's surgery, working two jobs, working and going to school, and previously having surgeries and going to school full-time, I am really looking forward to JUST staying home this summer, and working one job this fall. Jiliang's needs have really forced us to focus on FAMILY, so everyone in the household benefits - especially T.J. and Jiliang.
Jill :)

We Are Home!!!! So Happy!!!!!

We are home!!!!!
I wrote the other post yesterday and never had a chance to get back on and officially post it until this afternoon, so I hope I didn't confuse anyone. We almost didn't get to home today, because her prescriptions had some red tape to get through, which are heart/lung meds, so we couldn't get discharged without them. We have 5 different meds to take. (Petrie, you mentioned that you came home with 12 - I would go insane! :) I thought that 5 was bad. The bad news is that she gets something every 4 hours, which means I have to set my alarm thoughout the night to get up and give her stuff. :( But that's only until June.
Jiliang got sick on her medicines twice today (at the hospital), but so far so good since we have been home. I am praying that things improve at home. I am also going to have to tweak her times. For example, her Lasix (diuretic) is at bedtime, and the one that makes her sick is given in the middle of the night. T.J. watched as I gave her the evening meds, and he said, "I hope that she doesn't get sick," with his arm around her.
This morning, she was bummed from literally being sick of meds. I said, "I have a surprise for you." She looked at me, as if to say, "Nothing could possibly excite me at this point." I handed her a bag and pulled out her princess sneakers and didn't say a word. She lit up quickly, gasping, and smiled from ear to ear. Then, she started to pull off her skid-free hospital slippers, and threw them to the foot of the bed, like, "Okay, I am SO out of here." She knew that her shoes were taking her out of the hospital.
She catnapped on the way home off and on. She clung tightly to her Mylar balloons while napping lightly, drifting off to a Chinese Lullabye CD my mom got her. As soon as we pulled into the driveway, she laughed aloud, like, "Thank God, you really are bringing me home!" I really think that she didn't know if I was taking her home or to a new temporary destination. It's sad, but true.
She loves wearing her helmet, which is great! I want her to wear it if she is wobbly, or on her bike or a swingset. I thought for sure that she would hate it, but she surprised me. I feel so much more secure when she has it on.
Honestly, she is a different kid at home. She is less wobbly, very active, and super-happy. She just keeps smiling ear to ear at T.J. and I. She keeps kissing us too, and she is not the kissing type. :) It is great to see her so happy. You can tell that she is relieved to know that this is REALLY her permanent home. She knows that we didn't abandon her.
I am so happy too. She was such a crab-apple in the hospital, that I started to question whether she really was as happy as I had remmebered or not. And YES, she is that happy, especially today, grinning ear to ear and clinging to her Big Brother, who was so happy to see her back home as well. They have been joined at the hip since homecoming, around 7:00 p.m. We might all camp out together tonight in the living room, because she keeps waking up and looking to see if we are still here and if she is really HOME!!!! And after all, it is no ordinary day.
Jill :)

Going Home Tomorrow!!

Jiliang will be going home tomorrow!!! Tomorrow will be Day 24 of being in the hospital. The chest x-ray this morning was good, at least for her. I keep finding out new, mysterious things about her, and it is all so hard to understand everything. They are sending her home a whole slew of medicines, so the next few days are going to be busy getting the prescriptions into our hands, and getting into the routines. Between all of the different medicines, she will be getting medicines about every 4 hours. After June, we should be down to only 2 medicines: One, 3xs a day and the other, only once a day.
Her balance is still a little off. However, she almost tries to sprint or run when I am with her. I need to get one of those little shopping carts for her to push around for her balance. They talked about doing some short-term outpatient physical therapy for her if needed. I think that she will be moving and grooving when she gets home. The wobbliness is a combination of the medicine and it due to some muscle atrophy, from being in a bed for over 3 weeks.
She had another echocardiogram yesterday, and compared to the one on May 5th, the heart function and the pressures were pretty consistent. I am a little worried about those pressures. I want more specific information. Every time someone says that her pulmonary pressures are still "high", I get scared; or when they say anything about Pulmonary Hypertension or damage, I get a knot in my stomach. I don't want to know how bad she is compared to a normal heart and lungs, but I want to know how much better she was before the surgery. I want to know how far she has come. That will give me a much better perspective. The truth is: No one knows what her future or prognosis is at this point. I opt to see the best-case scenario, because I have learned that a positive attitude does wonders for healing. I know that I can be positive and hopeful, yet still handle whatever life or fate throws our way. Life is so precious, and I am working on taking everything one step at a time. I know that Scott would agree.
I do know that her Oxygen Sats tend to drop when she is sleeping, which is attributed to her ASD, with a right to left shunt. She also does have an enlarged heart from it having to work so hard. When her heart begins to heal, it may revert back to a normal size. I only shutter to think what a few more months in China without medical intervention would have irreparably done to her heart. However, I thank God that she was well taken care of in China, because she is miraculously here today.
I thought that being at the hospital for so long would give me an opportunity to read several books and get a few things done. I am shocked at how much work I actually do here. I have bathing her, changing her, giving her medications, walking her, comforting her, entertaining, taking her to the restroom, and talking with doctors and nurses. I am so tired when I go home each night. I think I was less tired when I was working 2 jobs up until I went to China. Ha ha. As much of an adjustment it is going to be, I am really looking forward to taking her home. I also go back to work this coming Monday, so that will actually be a nice way to get back into the swing of things until summer break.
T.J. is really looking forward to Jiliang's Homecoming. He was so excited to hear that she was coming home on Thursday. The kids also play together and entertain each other very well.
Tonight, Jiliang has a nurse that speaks Mandarin. Yeah! Jiliang really likes her. We called in a translator today, specifically to explain that she needed to swallow her particular pill that usually gags her in liquid form. The translator was the same woman that came the day of her surgery. She tried to throw an animal at her, and when I blocked it, she tried to throw her helmet at her. Luckily, I blocked that too. We tried it in applesauce and sherbert, and she did not cooperate very well.
She would not acknowledge the translator, once again, but we could tell that she understood. An alarm in the hall went off, and Jiliang spoke in Chinese: "That sounds like a telephone". Then, she realized she goofed up, because she never acknowledges the Mandarin language, accept in the presence of family. The translator asked her to repeat, but she ignored her. Instead, she pretended to fall asleep and play possum.
I am tired, and very ready to get my girl home. I will try to post some pictures of her later. Thanks so much for all of your support. The prayers and encouragement really help on those tiresome days.
Jill :)

Jiliang's Latest Echocardiogram! & Updated Thanks!

I spoke to a cardiologist today who is reviewing Jiliang's case while she is at the hospital. Her surgery appears to be a success. There is some valve leakage and a couple of other minor things that were noted about her heart, but nothing to be concerned over. Her Right Ventricle is operating on the low end of normal, but also nothing to concern ourselves with. Everything about her heart is going to monitored very well throughout her life.
We also discovered that she had an ASD as well (Atrial Septal Defect). She had a VSD (hole)- that was closed in surgery - which corresponded with the nature of her heart defect (Truncus Arteriosis - Type II). However, she also had an ASD. From what I overheard a nurse saying a week ago, she is alive today because of the ASD hole in her heart. They left it there, because it served a purpose.
Her valve (aortic?) will eventually need to be replaced (hopefully not until adolescence); however, the conduit that was inserted in her heart to act as her pulmonary artery, is bigger than needed; so she can grow into it and it will allow her next valve replacement to be done in a cath lab, instead of having another open heart surgery. She is a perfect candidate for the cath procedure if all goes well.
Furthermore, the doctor stated that she may live a long full life, because I asked if her prognosis looked good for a long life, if everything goes well. She paused, and told me that she did better than they had expected. She said that a lot of the doctor's held their breath over Jiliang's surgery, hoping that it would work. There are always chances in medicine like this, and she was given and 80% chance at survival. They knew that the surgery was her best shot at a long, full life, but did not know if it would work, meaning: Would her heart accomodate the new structure and the pressures? We all prayed that she would survive, first and foremost; and that the surgery would be successful.
Her pressures are still high in comparison to normal pressures of a heart without defect. However, with her medicine, they are significantly lower than they were without the surgery. We are hoping and praying that with TIME, her pressures will normalize or at least be non-destructive to her lungs. It could be months, or even a year before we know that; but we do know that we have stopped the insurgence of damage to her lungs at this point; and with the surgery and the medicine, we are prolonging her life. We are hopeful that she will continue to make progress and have a long, healthy life.
After the surgery, Dr. Ohye told us that without this surgery she would not have made it into adulthood; and may not have made it into her teens. Another cardiologist in the Pediatric Cardio-Thracic Intensive Care Unit stated that he was shocked that she survived in China, in an orphanage, with no prior intervention.
The doctor that spoke with me today said that Jiliang was lucky that she came home when she did, and that we happened to be situated near U of M, of all places, due to the complexity of her condition. I don't know that anyone could certainly say how a few more months would have affected her condition, but I do know that it is very possible that 3 more months could have adversely made her a NON-candidate for surgery.
When we first saw her file and locked her file in on my lucky number date (11/06) last November, we weren't expected to find our daughter that soon. She was the first official file that we looked at, and we could have continued on. BUT WE KNEW in our hearts that she was meant to be ours. However, we also knew that there was no way on earth we had time to come up with the expenses needed to get her home. We were told that the Special Needs process took approximatly 3-6 months, once you accepted a file (keep in mind, we already had a file logged in to China). At first, I told Amy at West Sands that the 6 month end of the spectrum would be best, because it would be near my summer break, and it would give us time to come up with the expenses. We went on blind faith, not knowing how we were going to get her home.
For some reason, everything moved faster than expected. :) God had other plans for us and Jiliang. HE moved mountains to get her home. It wasn't just China that moved fast, but the U.S. side that moved fast. Financially, everything fell into place. We did a fundraiser that my husband was opposed to doing. Friends, relatives and complete strangers helped. My Loving China's Children group held us up in prayer and helped us raise an additional $2000 in conjunction with our agency. Taxes came just in time. Money that was owed to us suddenly appeared; and my sister came to my rescue, literally, in the final hours before I traveled. God Bless everyone that helped bring our little girl home, and THANK YOU! It was truly a miracle that we were able to get her home; and that everything about her medical needs fell into place; and that we just happened to live near one of the best Pediatric Cardiology Hospitals in the nation.
We thought we were dealing with a complex, yet very straightforward heart defect, which we assumed at the time was Tetralogy of Fallot. However, our daughter turned out to be a mystery-heart defect. There are other children that have Truncus Arteriosis, yet, they are corrected at birth. Only 20% of the children with Truncus survive their first year of life, if uncorrected. Our daughter was in that small percentage.
When I brought her home, she showed some stubborness and strong-will, and even mischieviousness underneath her sweet, angelic disposition and cute dimples. We celebrated that she would fit into our stubborn, strong-willed Koeppe family. What we didn't know was HOW strong-willed.
These last few weeks, Jiliang has shown strong-will and perseverance time and time again. She is like the Energizer Bunny, or better yet, like the unstoppable Arnold Schwarzeneger, in THE TERMINATOR. Give my kid as much sedation as you like, but she'll still climb out of bed, even if you give her enough meds to take a horse down. AND, she will stay awake for as long as she needs to, despite multiple medicines (sedatives, antihistamines, VALIUM) to make her sleep. She is amazing. The nurses are shocked when she stays awake ALL day, despite the above medicines delivered, only to nod off moments after visitors leave.
I can't wait to bring her home. She is so ready to come home. She looks into my eyes, and says "Home". I am praying that she is ready by this weekend. I go back to work on Monday, May 17th.
Please continue to keep Jiliang in your prayers. I know that her beautiful soul has big plans for this world. I will keep you all posted. In closing, thank you for your prayers, support and positive encouragement. I am praising God for all HE has done to bring our little girl so far. She has certainly weaved herself into our hearts, and we cannot imagine our lives without her in it.
"Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight."
(Proverbs 3:5-6, NIV)
Jill :)