Excellent News!!

Jiliang made some great strides today, and she is getting extubated tonight. I am staying here tonight to be with her. Once that's done, I am sure that I will not be able to post for awhile, because I doubt I'll be able to leave her side. Yeah!!!!
Jill :)

Okay, Good News

Yeah! Good news. She is doing fine and sleeping well. She had a periocardial effusion. There is a tube in there now. They got 70 cc.'s of fluid in the cath lab, and more was draining later. She went doing well on the vent, but tonight she is letting the vent do some work, due to her heavy sedation from the catheterization.
Today is my father-in-law's birthday. He came up to see her during the middle of all of this. The good news was that she opened her eyes while everyone was there, through all that sedation and not out of agitation.
She is not wanting to empty her bladder. Poor thing. She cries when she goes in her diaper. Today, she held everything for 12 hours. I showed up and told her to go pee and she did within minutes. It fact, she did it two times. She is definitely aware of voices, even through all that sedation. She feels shameful if she goes in a diaper. She is a very self-sufficient child.
Today, the nurse told her to cough when she had to do the suction, but this time her nurse today, who happens to be Chinese-American, told her to do it in Mandarin. Jiliang did everything she was supposed to do, without any problems today. The pneumonia is getting better as well.
So for the record, here is Jiliang's complications or battle scars in addition to a major open heart surgery:
*Fall out of bed, resulting in CT, X-Rays, and pulling her main arterial line and breathing tube out, resulting in a neck scar on the right side of her neck, and a new line put in on the left side
*Multiple transfusions
*2 Pleural Effusions (resulting in chest tubes)
*1 Collapsed Lung
*Pneumonia
*Ripped out her IV in her left hand - Now it's stitched in
*Pericardial Effusion, resulting in an echo, x-ray and surgical cath procedure
I am sure that I am missing something in there somewhere. My kid is tough!

I want to thank you all for your continued prayers. I pray that she has a peaceful night. I think that if one more thing like this happens, I am going to go bonkers.
For now, all is well. I will report on tomorrow, and hope for more good news.
Jill

Jiliang is in the Cath Lab right now - Keep her in your prayers

They pulled out a pulmonary arterial line yesterday and it bled a lot. Today, they pulled out another line and it didn't bleed a lot. However, Jiliang started thrashing about when they suctioned her lungs. Because of the thrashing, the second line starting spewing. If she had not thrashed, they would not have known that the area around her heart filled up with blood. They have her in the cath lab now to drain it. It was urgent, but not emergent. They took down to the cath lab at 6:15 and she will be there until probably 7:15 p.m.
Please pray that all goes well and that there are no complications with bleeding or damage to her heart.
I will post back later.
Jill

Pictures - Days Before Her Surgery

Surgery Day


Jiliang and Aunt Barb


Check out their shirts: His says "Ge Ge", which is big brother in Chinese, and hers says, "Made in China".




Chasing Bear Bear



Jiliang and Bear Bear




Watching Daddy, Papa and Uncle Greg cut down a tree

Evening Phone Update

I just wanted to add that I called to check on her status at 10 p.m., and the nurse told me that she was sleeping peacefully, and was only getting agitated when she had to suction her or move her. She is going to let her rest as much as possible.

Unfortunate Rollercoaster Ride ~ And Special Thanks

It seems like I post that Jiliang has a good day, and then she has a bad day. We had to leave tonight around 7:45 p.m. I wanted to stay, but we all rode in one car and needed to get T.J. home. It was painful to leave. She was having a bad night tonight, but I am hopeful that it is one of those storms we just have to weather so she can get better.

Because of the bacterial pneumonia, she started coughing today. Of course, she has tubes, so she can't really cough. They have to physically go in an suction her out through her nostrils and through her throat. It throws her into a sweat, agitates her, and makes her gag. Because she is being weined off of the Morphine and Adavan, she is less sedated and more aware of these very uncomfortable procedures. Now, she physically fights it, kicking and twisting her body, which makes it worse. It is so hard to see, yet it helps to know that my strong girl is still in that little body. Just for the record, T.J. and I leave the room if it needs to be done while he is there. He would be horrified to see his sister get upset.

The nurse tonight thought that the infection really set her back and it may be 3 more weeks before she leaves the hospital. I believe that when she gets her tube out, she will recover more quickly; although they cannot risk taking the tube out until she has weathered this infection. I personally think that we will have a better picture of her recovery this weekend, but I am not a medical professional.

When she is not being agitated, she pretty much sleeps through the day still. She is still sedated enough that I cannot communicate with her, so it's a Catch 22 - she isn't able to open her eyes. The good news is that she will probably not remember any of this when it is all said and done.

Anyhow, I hate to post these types of posts, because they are so saddening. Please keep her in your prayers. I know that antibiotics tend to heal, but usually it gets worse before it gets better, as far as getting all of the bad stuff out of your system. She is just getting pummeled with trying to recover from a major surgery and dealing with this.

Hopefully, the rollercoaster ride will end soon. I am not liking these good day-bad day reports. My heart feels guilty for putting her through this, when she was seemed perfectly fine up until her surgery. However, my mind knows that without this surgery she would not have made it into adulthood; and every day commenced more damage to her lungs. As much as it pains me to see her go through this, I know that her chance for long, full life are better with this surgery. I only pray that when things settle down with this infection, her body adjusts to accomodate normal lung pressures, so that this surgery will be a success and prolong her life. All I know is that she deserves a special day of pampering when this is all said and done.

On a positive note, T.J. and I went upstairs to the family room tonight for an ice-cream float social event. It was fun. We made artwork and did a puzzle, and relaxed. T.J. is doing much better, and he seems to be in much better spirits since his exciting day yesterday.

Special Thanks: Thanks for all of your prayers encouragement and positive thoughts. I especially wanted to thank T.J.'s teacher, Mrs. Chestney, for your delicious pumpkin muffins that you sent home with T.J. Thanks to Kristy and Phillip for the meals you sent. I can't wait to try them and take them to the hospital with us tomorrow. Laura McNeil, I got your sweet card. Thanks. Aunt Barb, I got the Society of the Little Flower card and prayer cards. That was really nice. St. Therese, with the Roses, was my favorite back in elementary school.

Thanks,
Jill

Jiliang Update

Not much to report today. Jiliang is being off of some things slowly, but since she is fighting off the chest infection, she is not coming off of the ventilator any time soon. Maybe this weekend? Poor girl. She is having a rough day, coughing and showing how uncomfortable she is with the infection. Thus, it throws off her pressure. :( Otherwise, she continues to make small improvements, and she is still showing her strong-will. She is stable, and they are taking taking good care of her. I can tell that she wants to get out of bed and go home. Unfortunately, we will probably see some miserable days and then some improvement. Because of the infection, she cannot be taken off the vent yet. Otherwise, her heart is doing well. It is the lungs and pressures that we are concerned about right now. Time will tell how her recovery progresses.

T.J.'s Survival Flight Pictures

Things to do when your little sis is in the PICU:
The dispatch center was pretty interesting. I vaguely remember being there many years ago, when I was a U of M dispatcher doing a ride-along one night. Dispatchers, J.J. and Carl, were really wonderful to my son. Thanks.


Checking out one of the blades


Who's having more fun? Mommy or T.J.?


Thanks Pilot Jeff. You made my little boy's day, and you did it with such genuine kindness, professionalism and good humor!


He wanted to know about everything.


Future pilot?


This is the helicopter that he actually sat in.


Thanks U of M for making my kid smile like that.


T.J. is telling Papa Harvey about his helicopter adventure. Everyone knows that "Harv" is a huge U of M fan.

I told T.J. that Papa Harvey and Papa Koeppe have both been in a Life Flight helicopter before. T.J. and I both loved the Survival Flight tour. It gives you a new appeciation on life-saving, especially when you have two people in your life alive and well, because of such incredible aircrafts.

My Girl is Definitely a Koeppe

Scott stayed with Jiliang late last night. She started to get agitated because they were suctioning her ET tube. She hates that. Then all of a sudden, she got a really mad expression on her face. My husband recognized that face and said, "It almost looks like she has a wet diaper." Sure enough, she did. The nurses asked if she was potty-trained and Scott said, "Oh yeah. After her catheterization procedure, they wanted to put a diaper on her, and she wouldn't let them, and chose to use a bed pan. She hates diapers." Just for giggles, Scott is super-familiar with the potty expressions, because that is his cue to say, "Mom, she looks like she needs to go to the bathroom."
Our girl is definitely showing her spunk. Hopefully, she will get that breathing tube out today or tomorrow. Then, she can come out of sedation.

T.J.'s Exciting Day at the Hospital! Pictures Coming Soon!

Today, I kept T.J. home from school and had him go to the hospital with me to see Jiliang. Things have been really confusing and emotional for T.J. First, he got a new sister who was too cute for words; and he struggled with wanting to like her, but was afraid he might get knocked out of the pecking order. Then, they became best friends, and were inseparable. When she went into the hospital, he was so afraid that something might happen to her.
A few weeks ago, I heard on the radio that my school district was going to be sending our lay-off notices for the fall. T.J. walked into school shortly after that. I didn't realize how serious that T.J. took the news. He was quiet all day in school, and then out of nowhere he said, "My mom lost her job today" very sadly. You see, our neighbor's house was recently sold after being in foreclosure. T.J. is starting to see the effects of the Michigan economy around us. Last week, he asked, "If you lose your job, are we going to lose our house?" I assured him that we would be okay.
Having Jiliang in the hospital has be hard for him. He couldn't understand why we would go to the cafeteria and leave her in her room, let alone come home without her. Yesterday was an emotional day for him, because we told him that she had a cold and we didn't want him to get it. He was speechless when he couldn't see her. Of course, a trip to the Family Resource Center put him in great spirits.
Therefore, I decided that he needed a day to rejuvenate his spirits, and see his sister, because he misses her, and he is grieving her absence terribly. He picks flowers for her on recess with his friends, and he draws several pictures and writes letters for her at school. When he arrived at Jiliang's ICU room, he drilled her nurse, Lisa: "How many days until my sister comes home? 1? 2? 3? What? 14?" Hopefully, it won't be that long.
He needed a day to recoup and just be a kid. I also knew that he needed a positive association with Mott's Children's hospital. Today, he got to see Jiliang. While we were there, we watched Tom and Jerry in Chinese, and he ate orange sherbert. :) Then, we were headed to the Family Resource room, and saw a Therapaws (Therapy dog) Golden Retriever on the way there. T.J. was able to pet him.
After we went to see the fish aquarium, we headed to the game and activity area. It was there that we received an exciting call from the ICU. Jane called to tell us that Survival Flight called back and had an opening for him to tour the Survival Flight helicopter on one of the landing pads near the Emergency Room. We were also able to check out the Survival Flight dispatch area, which I thought was particulary cool, because I used to dispatch for U of M DPS. We got to see all of the current planes, helicopters and vehicles on the computerized map. Jeff, the Survival Flight pilot, treated T.J. like a king. Our tour was just less than one hour. He got a Survival Flight pin and some S.F. tatoos as well.
After that exciting adventure and riding the escalators up and down for 15 minutes, we met up with Scott. We all had dinner together while T.J. talked about his helicopter experience. Then, we visited Jiliang, who was doing much better today. Today, he was begging not to leave the hospital. I certainly think that my boy needed a day to de-stress, and see that his sister was doing better.

Jiliang is on the upswing now & my clutsy move :)

Jiliang looked so much better today. The antibiotic was definitely doing its work. Yeah! No fever, no gooky nose, less fluid build-up. And guess what? Her numbers were looking better. She made such a remarkable recovery that there is a chance that she could be extubated tomorrow.
This morning, they guesstimated that she would be in the hospital for another 2 weeks, but we'll see how her recovery goes tomorrow and after she is extubated and awake. I am certain that she will thrive and expedite her recovery once she is awake and feeling secure. There are a lot of baby steps that still need to take place before the tube can come out, but I feel much more hopeful today.
This evening, she tried to sit up while Scott, T.J. and I were there. We were all laughing about something, and she must have felt left out, so she tried to sit up. Her hands were both restrained and she was using a lot of strength to put herself into a sitting position. This is the first time she has done this in our presence.
Anyhow, I put the sidebar down to get in a position to relax her. A few minutes later, water started gushing from the ventilator. Apparently, I pinched a hose and broke it. The nurse and a respiratory therapist assured me that it was no big deal. Luckily, it was anything life-threatening either. Scott was teasing T.J., and said that I needed to stay and work to pay for it by changing poopy diapers.
I am looking forward to more progression tomorrow. I will keep you all posted.
Jill :)

T.J. Makes the Staff Laugh - My Pick-Me-Up for the Day!

The Child Life Specialist introduced herself to me, and told me about the HOPE Beads program. Young patients receive a list of things to check off in regards to procedures that they have endured, such as: surgery, IV, chest tubes, EKG, blood transfusions, etc. When they leave the hospital, they leave with a beaded necklace. Each unique bead symbolizes something that he or she has endured. It sort of tells their battle scars. My little warrior has at least 20 items checked, and I told T.J. to look at everything that his sister had done. I said, "Look at all of these. Jiliang is so strong. She is going to have a lot of beads, and she deserves them."
Of course, T.J. responds very matter-of-fact: "Does she get one for falling out of bed? She needs one for that." The nurse burst into laughter, as well as I.
We wrote in "Fell out of bed" next to Special Event.
Jill :)

Thanks Everyone!

Thanks for your prayers. I feel so blessed to have my daughter be a part of your prayers.
Despite the downward spirals, I always try to see how a negative situation can be cast into a positive one. Today, T.J. was really sad that his sister was still in the hospital. He has missed her, and has been worried about her. Last week, T.J.'s class made wonderful cards for Jiliang, and today he brought in some pictures and letters that he made for her with his friends.
However, when he arrived at the hospital today, he was somber and withdrawn. I didn't want him to see his sister today, because she had been sick. Instead, T.J. and I ventured upstairs to the Family Resource Room where they have arts, crafts, beads, books, games, and snacks. Off that particular wing, there is also an outdoor play structure on the roof. We played, talked, laughed, sipped hot chocolate, watched Life Flight land, and made things for Jiliang - all while Scott sat with her.
When the resource room closed, we couldn't believe that 90 minutes had already passed. We challenged each other to a Mrs. Pac Man downstairs, and then we even embarrassed Scott in the parking lot by jumping and waving incessantly. We all left in a happier state.
Life has a way of taking your times of sorrow and turning them into opportunities for joy. Lately, life has slowed us all down, but it only serves to remind us about what is truly important in life: love.
I am hoping and praying that tomorrow will be a day of recovery. Thanks for your continued prayers!
Jill

Jiliang Update

Jiliang is having another rough day. Her numbers are not looking too bad, but every so often her pulmonary numbers spike and her 02 Sats drop, and come back up. I think the pneumonia is hitting her now. Her top lip is swollen about 3 sizes, she has had a fever, and has been having bloody noses.
T.J. came up with Scott, but I'm not letting him see her. I didn't get a hold of Scott in time, so they were already on their way. I don't want T.J. to see her with a bloody nose, and I don't want him to be exposed to pneumonia either. I am hoping that her antibiotic knocks some of it out by tomorrow. Because she is vulnerable from the surgery, it is unknown how it is going to affect her recovery, and that scares me. We are really getting tired of the emotional roller-coaster ride, so-to-speak.
I just wanted to put it out there that if you have a cold, flu or bug, please don't come around our daughter. She is currently very vulnerable in her current state, but in general, her heart condition may always leave her more susceptible colds due to her heart and lung disease, and she could have a harder time recovering. I just wanted to warn about her vulnerability, because it's very scary.

My girl is a fighter and I am just looking forward to the day when I can see her open her eyes. It is so hard seeing her with her eyes closed every day. I suppose if you are going to be sick, it is better to have some sleeping drugs, and amnesia drugs, right?
Please keep her in your prayers.
Thanks,
Jill

Prayers for Chrissie

Please pray for this little girl who is currently undergoing serious heart surgery right now: www.allarepreciousinhissight.blogspot.com

I heard about their blog through another adoptive family. Her family needs to be covered in prayers right now.

Jill

Jiliang has Pneumonia

My girl has been a little febral these last few days and even though she has shown some small strides, her health has been compromised by the fact that she came back positive for bacterial pneumonia. It is probably something that she was exposed to prior to her surgery. It is unlikely that she contracted it here, as it is a strand found in the community. Because we have encountered our fair share of sick people over the last few weeks, I trust that is true. Coming to and from doctors appointments alone could have subjected her to it.
The good news is that it is very treatable by an antibiotic, and she will recover in her sleep and not remember it. The other good news is that it explains why she has needs extra supports and has had trouble with decreased oxygen. The bad news is that she will remain on the ventilator longer, and she will continue to be in the Pediatric Cardio ICU for several more days. I knew that she had some kind of bug, even though many things came back negative for infections. Although she has never had a surgery and she is heavily sedated, I couldn't help but think that her skin looked different and she sounded different.
She is getting excellent care her, so I know that she is in wonderful hands. Thank you so much for the prayers. Many wonderful people are looking out for hers, and her adoption story has touched the hearts of many people here, including some potential adoptive-parents-to-be.
Jill :)

Last Night :)

Last night, I called to check on Jiliang at 2 a.m. The nurse said that Jiliang woke up and got a little "squirrely" with her. She said Jiliang sat straight up in bed and started to look around the room with her eyes half open. She said that she looked like she was thinking, "Okay, I'm outta here." She had to sedate her to get her to lie back down. My poor girl. At least that's one kid with perseverance.

Jiliang Continues to Make Small Strides

Just a quick post: Jiliang is making small strides in the right direction. Those pulmonary sure love to move upwards, and that is currently our biggest worry. However, they are currently not bad, although not what they should be. In the long run, we hope that they will come down consistently. They are not talking about extubated her yet, and that may be a big source of her agitation or stress; but she still needs some of those extra supports. She is still so sedated that I am unable to communicate with her. I do continue to talk with her and let her know that I am here. I can't wait to see her open her eyes and be able to show her that we all love and support her.
I am leaving early tonight, because I have to be at home with my son tonight. Our house is certainly different without her. Scott and I were both just discussing how it was just him, T.J. and I for years, and now her abscence from our home is leaves us all missing her. It seems so quiet and lonely without her, although we are doing the best to stay positive in the midst of everything. We will be celebrating her homecoming greatly when she is released.
Jill

Update on Jiliang - She's Doing Better :)

We left last night and came home. I was going to stay, but the waiting room was packed. I dreaded staying last night, because there was a large group. Cell phones are not permitted in the waiting room, obviously out of respect for the families. Of course, there are always wonderful, supportive families who wait in hope that their child will pull through his or her next surgery, next day, next hour, next breath, and you talk and support one another - pray for their children.
Then, there are "those" people who bring every family member and forget to respect other people's privacy, peace, quiet and space. There were a group of people whose cell phones went off every 20 seconds with loud, blaring music. Then, they just scrolled down through their phones, playing 5 second clips of each song loudly. Then, there were these guys who were playing some comedian DVD on their laptop very loudly, and although it was humorous, it kept me from sleeping which I really needed from the night before. Later, the same guys were playing music backwards and laughing about it being Antichrist. I was so unnerved. Honestly, if I had stayed there, I probably would have resorted to violence or crazy behavior, and you would have seen me on the news. The hospital was mortified over Jiliang's fall and asked us if we had any suggestions on how to make the care better. We offered nothing at the time, but I can suggest that waiting rooms be more peaceful in lieu of families' needing peace and rest during these difficult times.
Right now, there is no sleeping space in her room, because she's in ICU right now. Once she moves to a regular room, I can sleep on the pull-out in her room. It was difficult to go home, but she was stable when we left and doing okay, as opposed to her previous night.
Just before midnight, I called to get an update: Her pressures were at 1/2 Systemic and she was doing well. This morning, the nurse reported that she had a good night and her pressures were just above 1/2 systemic. Half systemic is not where we would ultimately like to be, but it is great news and definitely a move in the right direction. It also means that her heart is adjusting, with medication, to the pulmonary pressures that need to take place to prevent further lung deterioration. Her pulmonary hypertension is the result of her repair not being done at birth. To be alive at all from an unrepaired Truncus Arteriosis is truly a Miracle.
All morning yesterday and the two evenings before, she was at 100% systemic and rising, which caused us to worry if she was going to have a successful recovery, and if the repair was going to all be for nothing. That is a horrible feeling. When doctors mention things like "sudden death" with high pulmonary pressures, it is so daunting.
One of the saddest things about staying on the Pediatric ICU floor is the sadness that you experience in the eyes of other parents. Yesterday, we got in the elevator with my parents to go home. Someone mentioned a party to T.J. and a woman said, "There should be more parties around here." Then, she said, "Today is my birthday." As we got ready to roll the Happy Birthdays off our tongues, she continued, "My son died today." We felt so much pain for her and my dad hugged her. I don't write this to make anyone else cry, but it just serves as a reminder that we should all cherish every moment with our children.
I will keep you all posted. Other than your typical ICU stress, there is the normal stressors of everything going on: life, finances... Yesterday, I found out that my FMLA had not been handled yet, and I was originally going to go back to work on this Monday. I was totally freaked out by that. Luckily, my Principal contacted me and assured me that she would check into it on Monday for me. That was a huge relief, and I am so thankful not be worrying about that this weekend, when I plan to rejoice over every baby step of Jiliang's recovery.
Thank you so much for your prayers, because they are helping us. For the most part, we are 95% strong and at peace. There are always those times when you feel pushed to your limits, and you think that God couldn't possibly dispatch another prayer plea, when I have been blessed by HIM over and over again these last few months - but HE always comes through. Once again, my daughter has overcome another hurdle and we are praying for continued recovery.
Thanks so much.
God's Blessings to you all.
Jill :)

Yesterday's Incident & When We Leave the Room

On Wednesday, some nurses were saying that patients don't hear you when they are fully sedated. I have never believed that. I keep telling Scott that she knows we are here. Wednesday, Scott and I went to lunch. Right after we left, she became agitated about something, and sat up and said "MAMA!" through her breathing tube, and tried to pull it out. They sedated her to calm her, and calm her pressures.
Wednesday, after I left, she had a bad night and worsened after we left.

Thursday, she opened her eyes several times and Scott and I were there. Of course, she opened her eyes out of agitation or pain. However, because of her bad night with pressures and fluid in her lungs, they sedated her heavily. Scott and went to lunch at around 3:00ish - a totally different time than the day before. I told Scott how sad I was to see her look so weak and despondent. I told him that I wished she would wake up, so I could look into her eyes and assure her that we were there. I also wanted to look into her eyes, because it is the best way for me to see what she is feeling.
Suddenly, I said, "Scott, we should go. I'm afraid something is wrong." He told me not to worry. About 10 minutes later, we left. As we were leaving the cafeteria, her ICU unit called me on my cellphone and asked if we were near. They said she was fine, but the doctor needed to speak with us about an "incident". I was totally panicked. I had a million things going through my mind: she coded, her surgery needs to be reversed...
We got to the 5th floor of ICU and a nurse was waiting to escort us to the doctor. It also so happened that my Deacon from church was waiting too. I said hi to Deacon Jim and told him we'd be back.
The took us to a private room to meet the doctor. I was so nervous. He came in and told us that there was an "incident". Jiliang fell out of bed. They got her taken care of and order x-rays. She pulled out her main arterial line in the right side of her neck and she pulled out her ventilator tube. The good news is that her pressures stayed okay and she was breathing on her own, although labored. She was without blood pressure meds for awhile and was unaffected.
Honestly, all I could do was laugh when I heard what the "incident" was, because I was expecting the worst. What most parents would be irate about, I found comforting. My girl showed her strong spirit and will to, albeit - escape. She is now known as the little girl with strong will with a flight risk.
Many of you might find this unsettling, but we know that the medical professionals are providing excellent care her and this was just an accident. She was completely unaffected by the slip out of bed, although she may have some battle scars from pulling out her main line and trachea tube.
The nurse was mortified. The doctor is charge was all over it. He ordered a CT of her skull, because of her current skull defect, and to make sure that she did not have an internal bleed. Everything came back negative: skull CT, X-rays of her abdomen and chest (on the hospital).
We assumed that she slipped out of one restraint and slid down the bed until she was in a sitting position, because there was not as much of a bruise, or even a scratch. She still had a hand in the air from a restraint. How does a fully sedated kid do this, unless she knows that we leave?
I think that Jiliang is hypervigilant about the separation anxiety, so she fights the sedation. The day nurse said that Jiliang should needs more sedation and fights the sedative effects. Most kids without prior surgeries do not need that much sedation, but she is doing everything she can to stay awake.
Right now, she is so out of it, and it is hard to believe that my strong girl is in there somewhere. I just have to believe that she is waiting to bust out of her shell, and that she doesn't give up hope - She gave me a sign yesterday. I am just so sorry that she has had to endure all of this. I can't wait to see her in a conscious state, so I can reassure her that she has not been abandoned. I think that she will thrive better when she feels safe in the security of her family.
Right now, she has an infection, fluid pockets on the lungs and trauma to her body from the actual repair. We think that the need for O2 and high pulmonary pressures at systemic levels are due to the pulmonary effusions (fluid in both lungs). She is still stable, and I feel that she is going to make a recovery; but as parent, there is always that fear of things taking a turn for the worse - I have a fear of the unknown.
I am staying here again tonight, but I have requested that the staff alert me if she is having a rough night. I told the team of doctors at her morning call that I would rather rest assured knowing she is safe, if I haven't received a call. My sleep can be interrupted. That is why I stay here and not at home.
I appreciate all of the prayers, and I am getting ready to check on her now. For now, Scott is with her. Thanks for your continued prayers.

Prayers Still Needed

She had a worse night and a scary "incident" yesterday afternoon that I will explain later, resulting in her having a CT and X-rays. She has 2 pleural effusions, and had a collapsed lung last. She was at systemic last night, her O2 Sats dropped and they had to bag her. I was sleeping in the waiting room, but they didn't come to get me, so I will request that they come and get me if it occurs tonight.
Please keep her in your prayers.
Jill

Jiliang Had A Bad Night ~ Prayers Needed for a Safe Recovery

It was so hard to leave last night. I felt a pull to stay, but I was told that she would be sedated all night, so I went home to be with T.J.
This morning, I woke up and felt that Jiliang had a bad night. I packed items to stay tonight as we anticipated that she might awaken today. T.J. asked me this morning, "Where's Jiliang? Why did you leave her at the hospital?" I explained. Then he said adamently "You shouldn't have left her there Mom. You need to stay all night with her." Those words haunted me this morning.
When we arrived, they were putting in a chest tube, because of excess fluid build-up around the lungs. She possibly has an infection, and she had a fever last night. Her nose is possibly infected too. They fought to keep her pulmonary pressures from rising above systemic. Those pressures are trying to go high and we need them low. She had a really tough night. She looks sick and stressed and weak. She is really struggling, so please keep her in your prayers.
Please keep the prayers coming. I may not answer all of the emails and posts, but I promise that I read them.

TJ visited Jiliang yesterday

T.J. came up with my sister yesterday. Scott didn't want him to see Jiliang with all of her tubes and with her being sedated. However, T.J. really wanted to see her. I prepared him for all of the things that he might see, and explained that he needed to be quiet, because there were sleeping babies.
He walked in with Leah and I, and we looked through the window. He was comfortable, so he sat down next to her. He was very interested in the machines and tubes. "What does this do? What does this go?" Upon leaving, he told her goodbye and that he loved her.
We also had a pleasant visit from Dave Dorian, who came bearing a care package from Local 3008. Thanks for all of the wonderful activities. You are all our Second Family. Jiliang will enjoy them once she is awake.
Jill :)

Jiliang Update

Jiliang is still going to be sedated, so I will not be spending the night tonight. However, if she is awake tomorrow, then I will be spending every night here.
After we went to lunch, the doctors and nurses moved her which agitated her. She sat up and tried to yank on her breathing tube gently. Then, she cried, "Mama!" through her breathing tube. :(
She is in excellent hands. Her pressures are coming back up, so the pressures are not as good as they were last night, which is scary to see; but the doctor's believe that her condition is still very good. They want to treat her aggressively with blood pressure medications and then hopefully wean her off slowly, possibly over months. She still has many hurdles to overcome, but I have faith and hope that she will do well.
Please continue to keep her in your prayers.
Thanks,
Jill

Jiliang is still doing great!

Our girl is still doing wonderful. She woke up a few times when the nurse's checked her. Luckily, we were here to comfort her. She reached out for me to hold her. She hates the breathing tube. I am sure she is thinking, "Oh, help me. There is something in my throat. I'm going to choke. Hurry, someone get it out!" Then she physically tried to rip it out. She was scared and agitated, so they sedated her. During that time, her blood pressures did rise.
I won't be posting many more updates today, but I will keep you posted if anything new arises.
She still has some big hurdles to overcome and they are still monioring her pressures. Continued prayers are still appreciated. It looks like she is going to be in the ICU for 3 more days.
Thanks for being a part of our little girl's Miracle!
God Bless you all.
Jill

Out of Surgery!!!! Doing Great!!!!

Jiliang is out of surgery and doing well. The surgery was a success. Thanks for the prayers. We are heading to eat dinner while the prep Jiliang for her ICU room. The laptop is going to the car now, as we will be heading to dinner and then to see our daughter.
Updates will commence tomorrow. I can't say enough about how thankful we are for our wonderful Prayers friends and family.
God Bless You All!
I will give you an update tomorrow.
Jill :)

Excellent News!!!

Just as I was finished up the last post, the nurse gave us another update:
Drumroll....

She came off of the Bypass. Everything is going very well!
She has a Whiff of Blood Pressure Medicine and her Nitric Oxide,
and she is at HALF SYSTEMIC.
They were hoping for at least 3/4 Systemic and she is at 1/2. That is incredible news. She eventually needs to be at 1/4 Systemic, but it could take weeks or months to get there, and she is already on her way making this surgery a success.

It will take another hour for the doctor to complete her surgery and suture her chest up. Then, we will speak with the surgeon and hopefully see her around 8:30 p.m.

I am so excited! Our little girl is so strong! I am so proud of her.

Thanks for your continued prayers. Keep them coming. This is not over yet, but it gives us much cause to be joyful, rejoice and thank The Man Upstairs, and I don't mean the surgeon - although he IS pretty awesome.

Jill :)

Still Going Strong - Great News coming....

I would have updated sooner, but I had to watch a video (mandatory) :) of the PICU where Jiliang will be going after surgery. I also had some papers to fill out about Jiliang; and Scott and I toured the PICU. Afterwards, Scott was hogging the laptop. :)
4:30 p.m. They informed us that they had just closed her VSD and were getting ready to begin to introduce the conduit.
5:00 Jiliang's cardiologist, Dr. Cotts, came to visit us, see how we were doing, and make sure that we had been receiving updates. He also informed us that Dr. Ohye had introduced the conduit. It was very large, so it will grow with her; and it may be able to be replaced in the Cath lab next time, which would be wonderful.
Jiliang's surgery will definitely not be finished until after 6 p.m.
Afterwards, Dr. Ohye will come down and speak with us, then approximately 60-90 minutes later (if all goes well), she will be
As I was typing this, I started talking to another family. I asked about their child, and found out that their child just had a very extensive craniofacial surgery, with the same craniofacial plastic surgeon and neurologist that Jiliang was scheduled to see on Monday. After talking to them, it gave me hope and comfort that Jiliang's skull can be fixed.

Jill :)

Everything is going as planned

Her chest is open. Everything is going as planned. She is on the Bypass now and the actually repair is going to commence. I will keep you posted.
Jill

Surgery beginning

It is 2:53 p.m. now as I type. Dr. Ohye is with Jiliang. She did remarkable well this morning while she waited: laughing, smiling, playing. When the anesthesiologist came to get us, she hid under the blankets. She started to cry, so the anesthesiologist allowed me to go with her to put the mask on her. I told the translator to tell her that Mommy was going to get her P.J.'s on and we were going to go have a nap. It worked out well, because they gave me one of those CDC-looking gowns, but with legs, and a hairnet. I said, "Don't my PJs look beautiful?" and she gave me a queer look. She fought to stay awake, but I was so thankful that they allowed me back.
3:00 p.m. She is most likely in surgery now.
I have to give "MY" laptop back to Scott. :) He is trying to drown out all of the noise in the waiting room: cellphones going off like crazy with music every 2 seconds, loud families, tvs...
Thanks for the prayers. It has been a smooth day so far - I am sure those prayers are working their MOJO. Keep up the awesome prayers. It will be a few hours before we get another update. I will keep you posted when I can.
Thanks,
Jill :)

Surgery Time Tomorrow - Keep Praying

Thank you for your amazing and wonderful prayers and support. They are definitely helping. There are so many people to thank, but I do want to thank Shelley for putting together a prayer group to pray throughout Jiliang's surgery, even in such short notice.
Jiliang needs to be at the hospital tomorrow at 10:30 a.m. We are the second surgery that day. The surgery is scheduled to begin at 11:30, but it depends on what time the first surgery ends. The doctor said that it could take a while to prep her and get her wired up and intubated. That could take another hour. Dr. Ohye thought that he could even be started around 2:30 p.m. In other words, we have no idea, except to say that it will be after 11:30 officially. The surgery, once started, should take approximately 4 hours, unless there is a complication.
The early morning prayers will not be in vain, as she is now extremely nervous of hospitals. As soon as Scott and I left the house with her today, she must have thought, "Oh great, what medical torture awaits me today?" She knows that she is going to be poked and examined. She saw a teenager walk out of the lab after getting a blood draw with a Band Aid on his arm, so she frowned at me and hugged hugged me tight. I told her, "Yes, Jiliang, you are getting one poke here" holding up one finger and pointing to her arm. "Just one." She is a child that cannot be fooled and it's more conducive to just prep her about what is going to occur next.
The surgeon sounds very optimistic and confident that Jiliang would respond well to the surgery. Just a reminder, if you missed it, she does not have Tetralogy of Fallot. She has a more unusual defect called Truncus Arteriosis. They are going to separate her pulmonary and aortic arteries, creating a new pulmonary artery for her. It is amazing what medical advancements have been made in Cardiology over the years, and it will only continue to amaze us more over the next decade or two. After that, they will close her VSD or hole in her heart. The biggest obstacle is her lung pressures. We are praying that the pressures in her lungs begin to decrease. If they do not, then Dr. Ohye may have to open the VSD back up, and our surgery attempt will have been unsuccessful.
If the surgery is successful, and the pressures to the lungs decrease, she will have a chance at a remarkable, full life, like a normal kid, except for replacement conduits as she grows. Dr. Ohye also believes that she could potentially be a candidate for her next conduit in a cath lab in the future. He is also optimistic that Jiliang's heart will accept the changes and continue to thrive and do well, based on the data from her catheterization procedure last Friday; and based on her resiliency and ability to thrive up to this point.
It might be a while before I have a substantial update. I will try to post when she is in surgery and when she is stable. Jiliang will determine the length of her stay in the ICU recovery area, and in her total stay at the hospital in general. We are planning on a couple of weeks at least, but hoping for less.
Keep up the awesome prayers!
Thanks!
Jill

Prayers Needed for Jiliang's Surgery This Tuesday, April 20th

Please keep my daughter in your prayers. I will find out the time of surgery tomorrow and let you all know. It is a very complicated surgery with risks, but we are relatively at peace at this time, knowing that it is in God's Hands. We ask for prayers for a successful surgery and full recovery. This surgery will give her a chance for a long, full life that she deserves, with a family that loves her unconditionally. I have had the pleasure of receiving many prayers and blessings throughout this process, which has completely transformed my faith and given me the strength I needed to trust in God's Plan.
Today, Father Dan, our priest gave Jiliang The Annointment of the Sick, which was very beautiful and comforting to Scott and I. Father Dan and Deacon Ray even offered to Baptize her earlier or perform it at the hospital if we wished; but affirmed that it was not necessary. I thought that was especially kind. At this time, her Baptismal is set for May 16th. I was going to have someone make a dress for her out of my wedding dress, but I found a beautiful white traditional Chinese dress in Guangzhou, China that will be perfect for her Baptism.
Our intended stay at the hospital could be a few weeks. Hopefully, it is not that long, because I will miss my little boy, T.J.
I will keep you all posted. Please keep Jiliang in your hearts and prayers on Tuesday.
Thanks,
Jill

Open Heart Surgery this Tuesday

I can't believe it! Tuesday, Jiliang has her open-heart surgery. I am so scared and yet, I know that this is her best chance for a normal life - if that is possible. I am not sure what time it will be, because everything is happening so fast, so I will not find out the exact surgery time until Monday. As soon as I know, I will let you all know, so that you can keep her in your prayers.
Dr. Ohye is doing the surgery. He is the surgeon that I picked one night to review her file. I emailed him and he got back to me within hours, offering to review her file at no charge. Somehow I knew that we would meet again.
I had originally planned to have her heart repaired for Tetralogy of Fallot by the time I was supposed to return to work: April 26th. Due to the misdiagnosis of her heart condition, based on the limited information in her medical file from China, we had to undergo various procedures to learn what her condition and options were. Only a mere week ago, we were dealing with the fact that our daughter was most likely inoperable. Wednesday, we discovered that she was an open heart surgery candidate, and today we scheduled her surgery for Tuesday, April 20th.
Let's just say that things didn't exactly operate on my timetable. However, things always have a way of working out. I told the cardiology department today that I was scheduled to return to work on April 26th, so her surgery would have to be next week, which I believed was close to impossible. This would allow me to extend my FMLA from the current 9 weeks, to a total of 12 weeks, returning to work on May 17th. Otherwise, we would have to wait until mid-June, which her cardiologist felt could be detrimental to her lungs. Behold, they had one opening next week: Tuesday, April 20th!

I am so scared for my baby. She has been through so much trauma and I really hope that this will make her quality of life richer and longer. When we were at the Pediatrician's office today getting her second round of immunizations, she was so scared. Who wouldn't be, for that?
We had a translator, even though I didn't request one. She was wonderful!! Her name was Jialin (I think I mispelled it, but it was so similar to my girl's name). She noted how sharp and observant that Jiliang was. She also noted her separation anxiety, and the felt the burden of emotional pain and physical trauma that no child should have to carry.
The translator was able to tell Jiliang many things that I have been wanting to tell her. When she told her in Mandarin, "Your Mama is never going to leave you. She is going to stay with you forever." Jiliang started to cry, hugged me tightly, and tears fell down her face. It almost brought the translator to tears.
She was also able to tell Jiliang:
. Your mom is bringing you to the doctor's so that she can fix your heart and your head. She is going to keep you safe.
. Your mom is sorry that you have to get shots. You get shots so that you won't get sick.
. Your mom showed you pictures of your orphanage, your nanny (prounced I-eee), and your best friend named Gao Ji Fang; because they want to say hello to you; and they want you to be happy with your new family.
. She also told her that her best friend is getting a new mom and dad too.

Jiliang did not acknowledge or respond to any of her words, but it was obvious that she heard her and understood. That is typical of my girl, especially in a clinical setting, when she fears that someone will take her from her Mama.

While we were there, I was able to see the CTs of her skull. The pediatrician had never see anything so bad. It makes me realize that my little girl beats the odds as an infant. As a baby, she only had a 20% chance of surviving her heart defect. Add a skull defect, a burn, and we can go on and on. She is alive and thriving today, and happy in her new family. To me, she is a Miracle.
Each and every day with Jiliang is a gift, and every day she teaches me more about perseverance, strength, joy and unconditional love. Please keep Jiliang in your prayers for a successful surgery and recovery, so that she may finally have her fairytale ending and endless love of a real family. She is so precious to us, as she blesses our lives each day by her mere presence.

Thanks!
Jill

Jiliang's Best Friend, Gao Ji Fang

Cake pictures, courtesy of Ladybugs 'N Love from Above (care packages to orphanages)
Jiliang's Best friend is the little girl in the red. I have always admired her sweet little manners.

Gao Ji Fang is the little girl in the red

I have always loved how my girl is totally digging into her cake! :) She still has a sweet tooth.

I received the pictures of Jiliang's best friend, Gao Ji Fang, who is 4 years old with a hand deformity. I couldn't even tell from all of her pics (mine and Jennifer's) that she had a hand deformity. I hope that her adoption goes through and that she gets a wonderful family. I wish that we could adopt her. Right now is bad timing for us anyways, but I am still sending a message to her orphanage that I want to make sure that she finds a family; and if her adoption does not go through, I will help her find a family or adopt her myself somehow. I am sure that she is already underway.

A week before I went to get Jiliang, I got Jiliang's cake pictures from Ladybugs 'N Love From Above with Ji Fang in them, sitting next to Jiliang. I thought that I had seen her pictures on a waiting child list somewhere, but I couldn't remember where. I checked everywhere, but could no longer find her. In addition my wonderful Jiliang, my mom and I both thought Ji Fang was absolutely precious too, as were all of the children in the photos.

My hope is that I can find Gao Ji Fang's adoptive parents. What a beautiful gift it would be to give them several pictures of their beautiful daughter with a happy, sweet face at her orphanage, as well as pictures of her little friends. It would be a joy to be able to reunite the two girls someday.

I am posting pictures on my blog of her from Jiliang's cake pictures from Ladybugs 'N From Above (LNL) during the Chinese New Year in February. Here is the website with more of her pictures, and pictures of her orphanage: http://permannnewscorner.spaces.live.com
Of the first 165 pictures, currently on the site, The Gaoyou SWI pictures are the last 32 pictures. Jennifer told me that I could email them to myself, but I don't have the ability to do that for some reason.
Jennifer Permann did a wonderful job taking such amazing pictures of her trip. Thank you so much, Jennifer, for delivering a message to Jiliang's orphanage and nanny about her with such short notice (she got my message only several hours before her trip to the orphanage), and for giving us the gift of seeing these wonderful pictures. Jiliang could stare at them over and over again.

Gao Ji Fang is the beautiful little girl in the red coat. Please keep Jiliang's best friend in your thoughts and prayers that she will be with her forever family soon.

Jill :)

Video of the Kids

T.J. gets bored and breaks out with a magic trick for her. :)

The Verdict Is In - Good News

Watching Big Brother play a Sight Word game


Easter Sunday - Looking for frogs by the creek

We heard back from our cardiologist today!! We received hopeful news! A team of cardiologists and surgeons discussed our daughter's options, and did not stop at one option. I knew that it was a good sign when we didn't hear back from them on Monday. Our doctor informed us that the concensus amongst all of the cardiologists and surgeons was open-heart surgery. There are many risks, as this is not a common surgery. At this time, I would prefer not to openly discuss the risks, as I need to focus on a positive outcome.
If you are reading this, I need you to pray for our little girl. This is the news that we prayed to receive. Now, we pray for a successful surgery and recovery for our daughter. We do not have a surgery date yet, but hope to know soon.
What I didn't mention last Friday (after her heart catheterization), was that our doctor felt that Jiliang was inoperable. He felt that she may have a shortened life span and only time would tell what quality and length of life lied in front of her. I told him that Scott and I wanted a broad range of treatment options for her, from the most conservative to the most aggressive options. I also told him that I didn't want to stand by and watch our daughter deteriorate and die right before our eyes. I felt devastated.
I am usually quite an optimist and Scott is known for being the "cranky" one. In actuality, Scott is a much more positive voice-of-reason in the face of tragedy. His positive attitude held me up this last week. He told me, "Jill, she is here now. Look at that smile. That makes it all worth it." Scott took the approach of appreciating how long she had to live with us, instead of how long she had to die.
Jiliang has endured so much. Only 20% of children with her heart defect live beyond age 1 if unrepaired. She suffered a severe burn, a possible skull trauma, a severe heart defect, abandonment, living in an orphanage in a Third World Country, baldness that predisposes her to sun damage and thermal heat loss. She was scooped up out of a deep sleep and had to travel 3 hours to be handed off to a total, foreign stranger called "Mama", only to run all over China on adoption business, and then fly across the world to live with more foreigners. She is so happy, thriving and doing well; and it is hard to believe that she harbors a serious heart defect. I know that she will do fine, because she has a strong will to live. She's my little hero.
I have prayed and prayed, and asked for answers. Your prayers have reached us, and I am soaking them up. God is good. I am very thankful for this opportunity to repair her heart, and I continue to lean on my faith during this time more than ever. I am hoping for nothing short of a Miracle for my sweet girl. She has come so far, and deserves a long, happy and healthy life.
Jill :)


Riding her bike - a favorite activity


Looking for bugs with Big Brother, T.J.


Finding a spider on the garage


Running off the huge Easter brunch she ate with Grandpa and Grandma Harvey


Hanging out with Big Brother T.J.

Anticipating Good News

My friend, Jennifer, whom I met through the Gaoyou group, recently came home safely from her homeland tour in China (leaving Beijing on the 10th). She visited Jiliang's Social Welfare Institution with her family. I eagerly await the Gaoyou pictures and the photographs of Jiliang's nanny and her best friend, Gao Ji Fang.
Gao Ji Fang has a hand deformity, and I just found out that she is possibly in the process of being adopted. No information was permitted to be given about her adoption process. I hope that when I send an update on her health and a care package to her friends in Gaoyou, they will permit me to leave my name, address and email address for Gao Ji Fang's adoptive parents. It would be a dream to have the girls reunite one day.

Devastation in China

The earthquake in China was so devastating. I was up late last night reading about it, and this morning I that there was a series of quakes, with devastation in Beijing and Tibet. I hate to see what the death toll brings, as many people are buried and seriously wounded. It is so sad to see it anywhere, but obviously it pains me to see it, as I was just there and know of China friends, families, and expatriots currently there. Please keep China in your prayers.
Jill

My Time Zone for Posting is correct now!

Thanks for the help. At least when I return to work, it won't look like I am blogging from work. Ha ha.
It is funny when people mention how late I was blogging, and I add that it was actually 3 hours later. :) I am a night owl at heart. Of course, that has to change in two weeks, when I go back to work.

Does anyone know how to change the time to EST on here?

Every since I've started this blog, my posts and comments show Pacific Time, so it looks like I post 3 hours earlier than I do. That could not have looked good when I was working. Ha ha.

Jiliang's Ponytail

Jiliang loves to look at herself in the mirror. I am hoping to buy our little princess a full-length mirror this week. (I am selling some 2t clothing to pay for it, if anyone is interested.) Every day, after her bath, I style her hair and she runs to the mirror to check it out. She always smiles at her appearance. Even cuter is when I dress her - she spins around in a circle to model the outfit of the day for me.

Everyday is like Christmas for her: a house and a room of her own; plentiful food and drink; a never-ending supply in the house at all times; a clean bathroom, hand soap and TOILET PAPER; HAND SANITIZER; bubble baths every day; a bedroom and a warm bed of her own; pretty clothes and shoes each day that are HERS; new adventures; a cat to chase; a dog to blame things on; a big brother to play with; and people who love her!

Yesterday, she kept touching the bald spot on her head. I think she is understanding that her hair is different. We have been looking at pictures of other Chinese children on other adoptive families' blogs, and sees little girls at T.J.'s school and in magazines. Today, she was frustrated, because out of nowhere she was trying to put a rubber band in her hair. She must have seen a child with a ponytail somewhere. I have always loved seeing Chinese children with the two mini ponytails at the tops of their heads with little tufts of hair sticking straight up. I put a pony on the side of her head where there's hair. She was so proud of it. I wish she could have had two ponies, but maybe it will happen this summer.

As of this day forward, I will not be mentioning her bald spot again in front of her, as I don't want her to feel different. A lot of the nurses at the hospital asked about it, and I usually desribe the extend of her burn and how it affected the growth and closure of her fontanelle (from what we understand). I always think that the nurses are asking because they need to know her history, and then realize that they are being curious. So, I have to be careful, because she understands what I am saying now, and can pick up on other people's response or their pity. She is not a kid that it fond of pity. Therefore, I will not be bringing her head issue up in front of her anymore, unless something neccessitates it.

Truly, I feel that I have been too forthcoming with information, but had I been prepared to understand how to answer questions prior to traveling to get her, I may have found a better way to be supportive of her. I wish that every parenting situation came with a manual on how to do the right thing all the time, but unfortunately that is never the case.

As parents, we learn by our mistakes. We hope that as we raise our children, they absolutely know that we love them unconditionally; and we hope that we don't inhibit their self of worth or scar them for life. That is the hardest part of parenting: There is never perfection. It is a cycle of love and growth.

Jiliang

No News Yet

I haven't heard from U of M yet. I hope that is a sign that they are getting multiple opinions, and that her treatment plan is not limited to one course of action. Hopefully, we will hear something this week.
I did have to call the On-Call Cardiologist last night, because she woke up crying and the bruised area around her catheterization turned to a blood red color and showed swelling and inflammation. She was itching the site terribly.
The on-call doctor said it could wait until the morning. Thank God, since T.J. was asleep and Scott had to work. We followed up with her pediatrician this afternoon. It was much better this morning, but I still decided to take her in. The pediatrician was a little stumped too, and called the cardiology department. We thought it was possibly an allergic reaction to something, such as the Iodine, or maybe Latex or something. The cardiology department authorized the use of Benadryl, topical or oral. They said that if it flares up again, we need to go to the ER. Hopefully, that won't occur. I had an IV site on my hand flare up once, and get inflamed, so I understand the discomfort she must feel.
As for now, I will just wait to see what the cardiologists say. I am not giving up hope for a Miracle, but regardless of the outcome, we are staying positive. Thanks for continuing to keep our little Angel in your prayers.
Jill :)

I Can Laugh Now!

We haven't received any updates yet.
****However, but one of the things that keeps us sane in our househould is our ability to laugh at life and at our selves. When we spoke to the cardiologists after Jiliang's heart catheterization on Friday, I must have been bracing myself pretty good. However, I was emotionally sound, objective, and hangin' tough through it all. After they were finished, they doctors informed us that they would take us to see Jiliang in Recovery. I got up to follow them, but as soon as I got up, my leg was completely asleep. I don't think that I have ever had it so bad before. We had to stop and pick up our things (my laptop, Jiliang's clothing, reading materials) in the lobby. I was grabbing everything and then my leg totally went tingly and numb.
The doctors were in the hall, politely holding the doors for us. They must thought that I was having an emotional breakdown in the lobby, because they didn't say anything. I told Scott, "Go ahead, leave without me." I felt asinine, like a pansy in a movie, saying "Go ahead, leave me, and save yourself," in one of those high-pitched voices.
Scott took my laptop and ushered me onward, shaking his head at me. The doctors looked at me, as I hobbled on my right leg, and drug my left leg in tow, while trying to do a sprint down the hall towards our daughter. They looked at me strangely, and Scott said, "Her leg fell asleep." They chuckled and continued down the hall as we followed.

******Once I saw Jiliang, in her groggy state of recovery, I scooped her up." The sweet Chinese translator - the one that the catheterization assistant basically forced me to have, even though I had made the original translator request- had been holding her and passed her on to me. I was thankful for the sweet Chinese translator at that point. Her name was also named Alice (not the same translator as our first one, who was also wonderful), and was very kind, helpful and poignant, especially from a medical perspective.
As I held my girl, I got a little teary-eyed. I NEVER cry in front of people!!! I asked Scott for a tissue to dab my eyes. He couldn't find one, so he stood up and got me a paper towel - that worked!
They were people walking by, and staff everywhere, so I couldn't get a moment's peace and have an emotional moment for the life of me. The staff - God love them, they were sweet - were ready to pounce as soon they heard me ask for a tissue. I started to tear up and covered my face so no one would see me cry. The next thing I knew, a nurse was behind me with a box of tissues, and her hand on my shoulder, saying, "It's okay to cry." I remember thinking, "Holy crap, where the Hell did you come from?" Then, she stood and watched as if she just gave me permission to open the dams of my tears. Instead, I thought, "Seriously, lady! That cathartic moment is gone now, and has completely set sail." Not another tear was permitted to be shed, as that opportunity had left me. For me, crying is a healthy release which doesn't happen enough; but that moment had ceased.
Luckily, we laughed about it later; and the nurse and her counterpart turned out to be very helpful indeed. The next time, just the tissues please, and leave me be. :)

****Also, we met with a wonderful social worker, Barb, prior to the procedure. It was a regular protocol, and she provided support and additional resources if needed. She and Alice, the translator, also gave us some information on other similar congenital heart defects that the U of M has repaired for children. We had to provide documentation for her that Jiliang was our adoptive daughter. Seriously, what would she have done if I had said, "Actually, I snuck her out of China in my suitcase..." I was shocked that they didn't ask us for the adoption paperwork when we had her MRI and CT, and she had been anesthetized then.

You have to have a sense of humor on a daily basis, or everything just becomes too serious. I believe that chuckles and belly-laughs each day are the best remedy to avoid being too sedate in the world we live in. It is always helpful when our idiosynchonies in life can also serve as our comic relief.

Here's to comic-filled day!
Jill :)

Overflowing!

Please know that I am soaking up all of the prayers being offered. I appreciate all of the love, support and prayers, and have felt blessed and comforted to know that we are not alone. It has also helped immensely to hear the stories of others in similar situations, knowing that others have been in our shoes.
We feel very optimistic about the outcome of Jiliang's Heart, whatever it may be, and we know that whatever her fate may be, we will have God's Grace to guide us, for HE has a perfect PLAN.
Keep sending up your prayers. We are feeling them.
Thanks!
Jill :)

Rosetta Stone is in the House

Okay, you will laugh at this: Shortly after Jiliang came home, my mom and dad offered to buy my a Mandarin Rosetta Stone as an "Easter" present. We wanted to preserve her native language as well as possible. I found a great deal online and hestitated because it seemed to good to be true. I paid through PayPal, so it was secure.
A week ago, I filed a fraud complaint with PayPal, because the webpage was no longer there, and despite multiple emails, I did not hear back from the seller. PayPal was all over it. It is such a pleasure to do business with PayPal, knowing that your purchase is guaranteed.
The UPS man just delivered it! Hopefully, it works. It will be fun to do the program with Jiliang, who can teach me. :)
Jill

Waiting

Unfortunately, we didn't receive any good news today; but endured the worst-case scenarios once again. I am looking forward to next week, as the cardiologists conference and discuss possible treatment plans for Jiliang. There may still be hope.
Our cardiologist admits to being one of the doctors who is conservative. He has told us all along that he is not a risk-taker. The original doctor that I contacted in the beginning is a risk-taker. So, at the this time, we wait. Hopefully, between the conservative end and the aggressive end, we will find a treatment plan that provides the best health and longevity for her. That is all we can ask for.
I am emotionally spent. Today was a very hard day. All I can do is leave it in God's hands, and trust in HIS plan. My heart breaks for the answers I do not have. I am still hopeful, but I need to focus on Jiliang and T.J. Therefore, as Scott put it, "Cherish every moment," and don't waste precious time worrying about it.
I can say one thing: my girl is one strong-willed child! She has been through so much and has so much energy to boot. She is truly an inspiration to me. When they sedated her, she fought so hard to stay awake that they had to give her another medication - one of the side-effects was hallucinations. :) I could have used some of what she had today. Just kidding.
The catheterization went well, and she recovered wonderfully. When she woke up, she ate two popsicles, an orange sherbert, water, crackers and juice. She refused to wear a diaper! That's my girl! They made her lie flat for a minumum of 4 hours, so she wasn't permitted to get up and walk or be carried to the bathroom. They didn't think she could use a bedpan, but I remember dangling her over a particularly filthy bathroom pit at a public bathroom in China, and she listened then; so I tried, and she used a bedpan 4 times - crazy sedation meds and all! They teased about how some adults couldn't even do that, let alone a 3 year old.
As soon as they moved us to a Mott's Children's room, she was all about eating: Graham Crackers, 1/4 lb. of chicken, cup of mandarin oranges, cup of mixed fruit, Cheetos, 3 juices, and water. She cracks me up. Then, she was like, "So let's play throw the stuffed cat back and forth." When the nurse came in and tried to take off her cardiology patches, she hid under the covers. I told the nurse to ask if she wanted to go home, and she quickly popped up from underneath the covers with a smile. Then, she assisted in tearing off the patches. Ouch! She looked at us to say, "For the love of God, just rip them off quick!"
Understanding the mystery of her heart is a crazy thing. She is a survivor with a strong will to live, and she really is a miracle to just be here. Every day is a gift, and she teaches us new things to appreciate about life on a daily basis. She is my little hero.
Please continue to keep her in your prayers. I am not sure when I will have a new update. For now, I pray that the doctors will be guided to help her in the way that she needs most.
Jill

Cath is Done

Cath is done. Getting ready for the doc to come talk to us. She is doing well and is still out. They are holding pressures on her arteries (standard procedure) to prevent bleeding. Keep you posted.
Next step, recovery area for 4 hours. Yikes.
Keep her in your prayers.
Thanks,
Jill

Jiliang's Catheterization - Going Well ~ and some Goose (Koeppe) humor

Jiliang is currently undergoing her catheterization for her heart. The procedure was delayed by over a couple of hours. Whew! We feel seemingly calm, considering the fact that she has a small object maneuvering around through her heart. The nurse just did a status check on her and reported that she is doing well, and remaining calm. Our little girl is such a trooper. She is such an inspiration to me.
They have taken some pressures in her pulmonary arteries and her lungs. They have been able to take some pictures inside her heart as well. They may need to inject some dye if needed, but I don’t think that is going to be the case today. After the Catheterization procedure, she will need to lie still in the recovery area for 4-6 hours. Wow. That is going to be a challenge.
I will keep you all posted on her status. Unfortunately, we may not have any answers today after her prognosis or an action plan to do or not do surgery. That will hard if we end up waiting through the weekend. Hopefully we will get some good news, but if not, we will wait for the answers that we so desperately need.
On the bright side, they are going to have a team of University of Michigan Cardiologists review the results and make their recommendations. On Monday, I stated that I wanted every possible treatment plan, from the most conservative approach (no surgery) to the most risky, non-conservative approach. I think it is important to have all of options at our disposal. I am praying for corrective surgery, to prolong her life.
I have to laugh, because we have maintained our usual Koeppe humor throughout this ordeal. Our closet is hallowed out, and Scott is going to find the time to put a storage organizer and racks in it, when he gets the time. LOL. A few weeks ago, I wrote about the free dresser that we were given after a Saline Church Rummage Sale. Remember, the one that was going to be such a blessing? Well, it didn’t fit in my car, so Scott went to pick it up the next day and it was gone. Seriously, even with a note on it. Someone took it! I have to laugh, because it was pretty ugly anyways; but I was trying to be thankful that it met our needs and after a trip to China and back, I have no place for fanciness. Just look at my wardrobe - That's where I need to start. He he.
However, that brings me to the point that our clothes are piled in baskets, as we have little dresser room and no closet room. Finding an outfit to wear is always a daily trial. I laid out a fire department sweatshirt and a comfy pair of jeans. Before we left, Scott challenged what I was wearing, because I was wearing his work sweatshirt. “You’re not supposed to advertise.” Honestly, I just wanted a warm, comfortable, hooded sweatshirt, and the zipper on my Chicago hoodie broke. After giving him a hard time, like I always do, I realized that I would not want him wearing a shirt with my work on it –although, that would be completely different in my opinion – I agreed to put on a new sweatshirt.
Twenty minutes from the hospital, I tell Scott, “Okay, I changed my sweatshirt, now I want you to let me play my my Joel Osteen CD.” It was an inspirational CD. Oh no, not Joel, "I hear that every Sunday." He begrudgingly agreed to turn off his radio to allow for me to listen to my man, Joel; and he cringed when the music came on: "Discover the champion in you". I am not making fun of Joel, as I am a huge fan - no, my husband is just super NON-sentimental." No sooner did we hit Ann Arbor and your typical kamikaze pedestrians, did Scott’s road rage kick in. It is hard to be inspired when your husband is calling people names that I wouldn’t write here - not that they don't spontaneously fly out of my mouth when I'm driving in Ann Arbor. If you are familiar with Ann Arbor, pedestrians just walk right out in front of you, which is annoying, especially when you miss your turn multiple times, because of the ignorant pedestrians who don't even look. Even though I lived and worked in the Ann Arbor area for years, I never ceases to annoy you, especially when you are enroute to the U of M Hospital.
Anyhow, we are managing to keep our sense of humor and we are hanging in there. We appreciate your prayers and will keep you posted.
Jill :)

Prayers for Jiliang's Heart Cathetarization

Enjoying Easter Sunday


Jiliang enjoyed playing with her new Cousins, Samantha and Clara, on Easter Sunday. She is jumping with them in this picture.

****Tomorrow, we find out the condition of Jiliang's Heart and if a repair for her heart is possible. We are praying a miracle that her heart can be fully repaired, and that they miraculously find minimal or no lung damage, and NO irreparable damage that would prevent a repair.
Jiliang goes in for her Cath at 9:00 a.m. and it will take a couple of hours. She will be in recovery for at least 4 hours. We don't anticipate being home until after 5:00 p.m., so I probably won't be able to post an update until late tomorrow evening.
Scott and I are both at peace with the Cath procedure tomorrow. It is in God's Hands now, and I bet all those prayers are helping too. :)

Thanks!
Jill


Easter Sunday - Smiling at Cousin Sammy. She had a messy face, but still a clean white dress. Shocking!

Help a Child Today! **Updated

Hooray, Lucy has found her forever home! Her family is trying to get her home fast, due to her severe heart condition.


Jeremiah's parents are desperately trying to bring him home safely, and they are committed to loving and caring for one of God's orphans.

I wanted to give you an update on Lucy, the little girl with the severe heart defect - she has found her forever family! The internet is an amazing resource today, and it allows people to reach out and help one another in ways that were futile just a decade ago. You never know when a simple touch of a keyboard can be a part of someone's Miracle. We are powerful in numbers! Please pray that her family can get her home in time for her to know the love of a real family. You can read more on Lucy and see more photos at: http://asiahope.blogspot.com/2010/03/appeal-for-lucy.html
You can help make a difference in the life of another child, Jeremiah. Jeremiah's Mom, Tami, has been a huge support to me during our Journey to Jiliang, and I am doing my best to Pay It Forward. If you are able to Grab Jeremiah's box or email his blog to others, it could make a world of difference to that little boy who knows no Mom or Dad. His family is in torment over his current health update, and is making desperate attempts to bring him home safely. Their family's blog is:
http://tillgodbringsthemhome.blogspot.com/
Please pray for Jeremiah and spread the word. It only takes a minute to post and a second to pray. When you sow God's seeds of love, you reap HIS blessings. I hope to be reporting good news on Jeremiah in the next couple of weeks. I believe that his parents will be rejoicing in good news soon, because God provides.
Please be a part of a Miracle for Jeremiah and Lucy. I also pray for these courageous parents who are committing to loving these children, despite all of the unknown health issues. I know that God will Bless them greatly.
Have a great day and thanks for reading!
Jill :)