What Life Becomes An Obstacle Course

I have had some intense support and prayers, and I really appreciate it. It means so much to me to have others praying in our corner and sharing their own struggles and triumphs as well. I had a few days of grief, from trying absorb everything that came back from Jiliang's Heart MRI. With the support and prayers from others, I have been able to get back into my routine and hope for the best this Friday. Writing is the best medicine for putting my emotions into perspective, so I am thankful for this writing forum.
Whenever it seems that I am on to something good, feeling hopeful, and immersed in my faith, I am suddenly bombarded by obstacles - a sequence of very negative, time-consuming events that occur. For instance, Jiliang's immigration paperwork, Green card, and Social Security card all came back in her Chinese name. When the insurance company processed her referrals, they mixed them up with my name, and even mixed up the doctors. I did not know that a cardiologist could do a CT of the skull. :) These are just a few examples of annoying events that will have me running all over the place and paying more money for name changes, legal papers, and causing spurs in the finalization of Jiliang's adoption. Certainly, I would rather be bonding with my children or playing Hide-and-go-Seek during this crucial attachment period. Of course, there are always your typical day-to-day annoyances, and that is just life.
During the adoption process, I felt the pressure of "obstacles" in an asinine propensity. There were even times in the process when I felt like we were going to defeated by "obstacles".
This is why this quote is so precious to me:
"When everything comes against you, oftentimes it's because God has something great in store." - Joel Osteen
I truly believe that when we are on to something good, and we are basking in God's glory, we are going to see more obstacles.
Fortunately, I feel that my faith and perseverance have both been tested to the core these last few years, and more specifically during these last few months, leaving me stronger and more stubborn in regards to perservering. So when these annoying things pop up lately, I get irritated, yes; but not enough to dampen my hope or ruin my day. I get mad and I feel that ultimately I am not going to let anything stand in the way of my joy, my faith, or my family's happiness.
What I have learned is to hold on to hope for something positive, and deal with everything one day at a time. You have to shrug off the irrating spurs in life and move forward with a faithful, hopeful heart. That is not to say that I won't be pulling my hair out tomorrow, but I have learned that things ALWAYS work out when you lean on your faith. Stay clear of negative things and negative people; and don't let obstacles bring you down.
So when you are at the end of your rope, just learn to shrug it off and go with flow. Things always work out, and with God, anything is possible. Hope, pray and hold out for the best, because it is always just around the corner. As one of my commenters, Lisa A., stated, "No One Can Take Your HOPE Away-unless you let them!"
I have a lot of friends who have helped and supported me in my time of need and I felt the need to write this today, because as I hurdle through my own challenges, several people who have lifted me up in my greatest times of need are being challenged exponentially. I want to give them the same hope and encouragement that they gave me when I needed it the most: Hope, Prayer, Love, and Perseverance!
My heart has been heavy all day for several people who are suffering at this time - people who have carried me through crucial times with their words of faith and wisdom.
If this blog has touched your heart, and you feel the need to pray for someone, please do it now. I also ask that you please pray for the Sizemore family - they are a wonderful family desperately trying to bring home their beautiful son, Jeremiah, from Taiwan. He is a little guy with Cerebral Palsy. He has recently become sick, and his health is deteriorating. You can help by praying for him fervently, so they he will be able to make it home to a family that is committed to loving him and caring for him forever. Please visit their blog, and if you wish to donate even a dollar, it could make all the difference in the world to little Jeremiah, for we are powerful in numbers. Please visit Jeremiah's site at:
http://tillgodbringsthemhome.blogspot.com/ or click on my Jeremiah box in the right hand corner of my blog.
God Bless You All! May you all be champions on your own obstacle courses.
Sincerely,
Jill :)

Amazing!!

The power of the internet amazes me. I met a wonderful group of people online that have all come together due to our connection with our children adopted from Gaoyou City, in the Jiangsu Province of China. This amazing group has lovingly connected China and America in a most profound way. There has even been a book written by the previous Gaoyou Orphanage Director, in regards to the bridge of love between the Gaoyou Orphanage and the American adoptive families. I was the recipient of such a book from Director Zhou, the current director, although it is in Chinese.
With everything going on with the holiday and with respect to Jiliang’s heart procedures, I forgot to email my fellow adoptive mother who was journeying back to China in April to Jiliang’s orphanage. When I first found the Gaoyou group, Jennifer had told me that she was traveling to Gaoyou in April. She also told me that if I had not brought Jiliang home by then, she would take photographs of her for me. I was very comforted in her offering of kindness.
The night before Easter, I emailed Jennifer and asked if she could give the orphanage staff a message from me, and see if there was any possibility of getting pictures of her orphanage, Jiliang’s caretakers, and friends of Jiliang. I was pretty sure that the delayed email correspondence would probably be read by her just after her visit to the Gaoyou orphanage, but I sent it anyway. The day after Jiliang’s MRI/CT, Jennifer sent me the following email:

"Hi Jill!

We had a very enjoyable visit today with the SWI staff. Please see my blog for more information.

I had our guide translate a paraphrased letter on your behalf, and the staff sends their good wishes and waits for an update on Gao Ji Liang's condition.

You had asked for the names of Gao Ji Liang's good friends and her nanny. Director Zhou told us she was looked after by several nannies, but two who spent more time with her were the head nanny Wang Ping, and another Nanny named Huang Su Qin. We were able to visit 2 rooms and play with the children there, and Wang Ping noted that Gao Ji Liang's best friend is a girl named Gao Ji Fang. I took several pictures of this adorable girl as well as Wang Ping, and I can send you these photos when I am back in the US.

Jennifer Permann"

What an amazing gift that is, and will be, when Jiliang sees pictures of her friend and Auntie in China. I wait in joyful anticipation.

Jill :)

Update on Jiliang - Good News or Bad News?

I was able to follow Jiliang with the anesthesiologists to get her prepped for the procedures. As I stated previously, I think it would be easier to avoid the translator next time. Jiliang was so scared, and was a little overwhelmed with two of us talking at her. Only one parent was permitted to go, so it was a little odd having myself and the translator there.
The anesthesiologists towed Jiliang to the anesthesiology area in a wagon. I was able to hold her hand. They put the mask on her to put her out and boy did she fight going to sleep. She is so strong-willed. She cried. It was harder to see than I expected, but I didn't let on how sad it made me feel. They said that it often took longer to put out Tetralogy of Fallot children out. I had to leave when they got ready to intubate her. I gave her a kiss, knowing that she was already out by then.
The wait seemed endless. It took around 90 minutes to the the MRI and then they prepped her and sent her on to have the Catscan which was another 30 minutes. She remained intubated and anesthetized the entire time. Overall, we waited almost 4 hours, which seemed like forever. That was the first time that I have ever been away from her since I met her! I had separation anxiety too.
Once she woke up in recovery, they called us. When we arrived, she was so scared. She woke up without Mama or "Dad". She was crying a sad, low, and very hoarse cry. I scooped her up right away and rocked her. The nurse with her was really sweet. She told me that she tried to sing to Jiliang, but my girl ignored her singing attempts; she tried blowing bubbles for her - no luck; and she even tried to give her a popsicle (Bomb Pop) and water, to no avail. Her Oxygen sats were in the high 80s and they should have been around 92-95, at least.
Shortly after I took her in my arms, she calmed down, ate two Bomb Pops, drank water, and her Oxygen Saturations rose quickly to where they needed to be. Just when you feel like you have no control over anything, you suddenly feel victorious when you succeed in nurturing a child to a secure state.
The cardiologist came to see us. In my heart, I felt he was going to say that he found the left pulmonary artery, but found another obstacle. Sure enough, he said that they had some good news and some bad news. They found the left pulmonary artery. Hooray! It is narrow, but the narrowness actually served to protect the left lung from high blood pressures. Then came the bad news: The heart itself has developed a left to right shunt which could have potentially compromised the right lung and altered the pressures in the heart. That could interfere a surgical repair.
We discovered that she does NOT have Tetralogy of Fallot! She does have a large VSD, and she has a severe, complicated, uncommon heart anatomy, as her cardiologist had presumed. Every indication in her medical history pointed to Tetralogy of Fallot, which has reputable repair success. Had her heart been repaired in her infancy, the procedure could have spared us this news and a risky, open-heart procedure. Most children with her heart defect have it repaired right after birth. There is a chance that her heart has undergone irreparable damage. That startling news is not good.
Before we decide the prognosis - worst or best-case scenario - we need to undergo a catherization of her heart to determine whether or not heart can sustain a surgery. On Friday, we are doing the catherization. Scott and I are looking forward to having some concrete answers about her prognosis and treatment options.
I still believe that they could go in and find the best-case scenario. The heart is an amazing thing. Our hearts can accomodate our most vital needs, but in doing so, they can also change their directional flow, their pressures, and reconstitute their plumbing in the process.
Jiliang has made a remarkable improvement in her health in the last two weeks. The nurse in recovery stated that children with her particular condition do not usually look as healthy as her. They are usually much smaller and weaker. That is what I am clinging to. I have hope. I believe that they are going to find a Medical Miracle when they do the catheterization on Friday. She is doing things that are unexplainable. I can only hope that her heart has made the accomodations necessary for her survival in a way that is NOT irreversible to the pressures in her heart, AND has not compromised either of her lungs, resulting in permanent pulmonary hypertension. If the best-case scenario miraculously exists, she can undergo a repair that will provide her with a long, quality life.
I hesitate to give more exactness about her heart anatomy at this time, but will share more when we have more definitive answers. At this time, I am honestly a little overwhelmed. I am doing well, but it is a lot to absorb. I am focusing on one day at a time, and trying to spend all of my free time bonding and enjoying my children.
Last night, I made the mistake of looking at the worst-case scenarios online. It is amazing how negative thoughts can diminish your levels of hope. Statistically speaking, my daughter should not be here today. She is a walking miracle.
Another adoptive mother of a Heart children lifted me up recently, and pointed out how amazing it is to have a child with such a strong will to live. She added that Jiliang was abandoned at birth and survived a traumatic injury that is still a mystery; she grew up in an orphanage where she lived over 3 years without intervention for a severe heart defect, and without the love of a Mama, Dad or Big Brother to nuture her in the familial sense. Despite all of this, she took a leap of faith in trusting me - once a stranger called "Mama" - and flew half way around the world to a place called "Home". She has come this far, and she has a strong will to live, not only in the mortal sense, but in a spirited, hopeful, joyful, embracing-life sort of way. I would not be doing justice to my child's spirit if I didn't have a hopeful heart and be willing to fight the good fight right along side her. Therefore, I have to believe that God will give her a Miracle. I refuse to give up hope.
Please keep her in your thoughts and prayers on Friday as we hope to unravel the mysteries of our little girl's heart. Thanks again for all of your thoughts, prayers and loving support. I may not always be able to answer back, but trust that I read all of your comments and emails and I feel your prayers working in our lives daily.
With Love,
Jill :)

Translator Experience

Jiliang is such a strong-willed little girl. She was so scared when we arrived to Pre-Op. I gave her some medicine to relax her. She fought the drowsiness so hard. Even with the translator there, it was not enough to divert her attention from what unknown torture lied ahead for her.
We had a translator again, who was really sweet, but it was almost a hindrance this time. The last translator was amazing, so Alice was a hard act to follow. Our translator showed up after we were in pre-op, possibly due to a scheduling issue. She did not really understand what was going on medically. We were trying to keep her heart from having a "Tet Spell", which could be serious if it occurred while she was under anesthesia.
Jiliang was comforted by hearing her speak to her in Mandarin, especially when they talked about her bike and her brother. Then, the translator had to take a call, and left. When she came back, it almost made things worse. Our translator today kept giving her too much information. I wanted her to explain that she was not going to get a shot and that Mom was not going to leave. She didn't want to deceive her, and we didn't want her heart to have a serious complication from anxiety. I don't advocate lying, but I am all for a safe procedure; especially when she won't remember it later anyways. I am not sure that I will request another translator, because I can comfort her and communicate with her now; and bring some of her toys. However, if I do have another translator, I will be very clear in the beginning about what I want her to say and why. Afterwards, I thought she was going to wait in the waiting room with us, and I sent her onward. I really some time to think quietly. Don't get me wrong, she was really sweet. It was just a stressful day in general.

THANKS!!! KEEP THE PRAYERS COMING!

Thanks for the prayers. Tomorrow is the big day for her MRI/CT. We will be there tomorrow morning at 7:15 a.m. EST. They are intubated and anesthetizing her. It's scary, but we are confident that she will be fine. We are hoping that they will find a pulmonary artery and a salvageable one at that, so that they can repair her complex heart condition. Keep her in your prayers. I will post with an update when we get back. Hopefully, we will have some news tomorrow. If not, we will get an update from the cardiologist on April 8th. I hope that I don't have to wait that long.
It's in God's Hands now!
Otherwise, we had a wonderful Easter with family. We had a busy day: church this morning, Easter egg hunt at home, brunch with my family. Then, Jiliang played with her new cousins, Clara and Samantha this afternoon and evening. Big brother, T.J., Clara, Samantha and Jiliang all got along beautiful and absolutely adored each other. They ran around all day, and Jiliang showed no signs of cyanosis (blue lips) or shortness of breath, like she did when she first came home. Good sign.
Blessings to you all.
Jill
P.S. Lavonne, thanks for updating LCC. Please keep them posted. :)

Jiliang's Personality Emerges - More photos from Leah to come

Unofficial family photo - We decided that we would not have an official family portrait until our daughter came home from China. We are planning that in the next week or so.

Jiliang happily poses with her Daddy on Friday the 2nd, after an Easter egg hunt at my parents' house

T.J. decided to jump into the picture at the last minute. My Uncle was tickling him, so he had a silly expression in the picture.

Jiliang with her Uncle Rick - In this photo, they just met for the first time, and she is warming up to him.

Today, Jiliang really started to ham it up. My sister Leah and I went to the mall to get the kids some shoes. Jiliang was posing with T.J. behind these butterfly and flower plywood cut-outs. Then, when T.J. was posing, Jiliang started to steal the show and pose and make these funny little Power Ranger moves while Leah was supposed to be photographing T.J.
This evening, our labrador, Bear - who ate a large portion of leftover roast beef - started to smell. She became very expressive and animated in expressing how bad the dog smelled. My mom and I were laughing at her so hard. She loves to laugh at the dog. The other day, she was playing in the sandbox, and Bear came up and lifted his leg on the corner of the sandbox. She stood up and laughed hysterically and said, "Mommy, doggie shi-shi!" pointing to Bear, like "What is wrong with him? Doesn't he have any manners?"
She is talking so much at home. Her and T.J. are playing so well, but the funny thing is that she is speaking in Mandarin and he is speaking in English. They talk back and forth, as if it were one flowing conversation. Tonight, she wanted T.J. to come sit on her bed and read books with her before bed. He didn't want to. She used a combination of English and Chinese words, along with clear gestures to assert what she wanted: "C'mon, T.J. sit......." patting the bed. He still said no, but only because they played side by side all day long.
At bedtime, we said some prayers, and I said "Amen" at the end. She said, "Amen" and I got excited. My mom stopped by this evening, and was in the other room with T.J. Jiliang yelled out, "Grandma, Amen. Grandma, Amen!"
I will post some pictures that Leah took of her hamming it up as soon as she sends them to me.
Jill :)

Prayers for Jiliang's Heart

Please keep Jiliang in your prayers this weekend. On Monday, we will have her Heart MRI that will tell us if she has a salvageable pulmonary artery. If they find it, they have hope that her heart can be repaired, which will give her a chance at a normal life and hopefully a very long lifespan. I am praying for a miracle for them to find a pulmonary artery, and one that is repairable, on Monday. I also pray that the anethesia and the procedure for the Heart MRI and Head CT to go smoothly and safely for Jiliang. They will be stopping her breathing to get a picture of her heart and lungs. I know that she will be in excellent hands at the University of Michigan, but because her heart is still quite a mystery, we pray that her heart will remain strong during these procedures.
They will also have a Mandarin Translator for Jiliang to walk her through the IV's and anethesia. That will help to ease her fears a lot. We have to arrive at 7:15 a.m. The MRI begins at 8:00 or 8:20 a.m. After the MRI, they are going to do a CT of her skull. They will keep her anesthetized until the CT is complete. They will be intubating her for these procedures, so hopefully she will be in recovery around 11:00 a.m. and we can leave by 1:00 p.m.
They have a anesthesiologist who is experienced with pediatric heart patients, and an ICU bed on stand-by. We are glad that the U of M doctors are taking every precautionary method possible.
We did receive some good news yesterday. When Jiliang came home, we had her blood taken to test for any thyroid issues, contagious diseases and bloodborne pathogens. Everything came back negative and we were very happy. We also had her tested for DiGeorge Syndrome. It is a syndrome associated with congenital heart defects and bone disorders. We wanted to rule out DiGeorge syndrome, because it posed other risk factors when considering surgery and it can affect bone growth and cause severe thyroid issues involving dangerous calcium levels. We thought that it came back negative with the rest of the lab work, but discovered about a week and a half ago that it was sent out to a genetics lab. Yesterday, we found out that Jiliang tested negative for DiGeorge Syndrome as well. :) We did not think that she had it, but it was a relief to hear that she did not have it. However, her cardiologist is still taking precautionary measures as if she had it. Patients with DiGeorge Syndrome need to have radiated blood in the event of a transfusion, or it can be fatal to them. He has reserved the radiated blood for her in the event that blood is needed. Once again, I am thankful that so much planning, communication and proactive medicinal thought has been dedicated to my daughter's care.
Please send forth your prayers for her on the morning of April 5th, 2010.
Thanks and God Bless You All!
Happy Easter.
Jill :)