What are the odds?
Chloe was recovering well the day after her colon resection. We were coloring, playing doctor and reading books.
I was so pleased. The little one went through such an ordeal with the obstruction. The obstruction occurred in the place where part of the colon was taken to add to her bladder to enlarge it. There was just a small band of scar tissue that formed and would not allow anything to pass after a small distance into the small intestine. The doctors had to take the section of colon out that was scarred and then manually squeeze the content of her bowels through the rest of her digestive track.
Can you imagine how sore you would be after that. However, little Chloe woke up the next morning with a few smiles for us.
So, you might all guess she is quickly getting back to herself and plotting how she can get in trouble here on TCH level 6.
We are again in that minority of 1 out of 5,000.
Chloe has another obstruction. Please pray with us that we do not have to go back to surgery. Everyone is keeping a close eye on her. All the nurses are eager to have Chloe as their patient. We are trusting God and have faith that we will be home this weekend.
Last night as Chloe was screaming in pain, burning with yet another fever and unable to sleep, I remembered my wish to be a Christian example to those here at the hospital. I cried out to God that I did not have in mind my child going through this much pain for us to be a Christian example to others. He quickly reminded me that He sent his Child through much more than mine was going through. I humbly stood corrected, asked for forgiveness and peace for my little one.
It is not all about me or my child. It is about His Child and I pray that all will take notice of the One we have received peace and salvation from and desire to follow Him also.
Hoping the odds are better than 1 in 5,000.
In His Name,
Amy
Tuesday, May 31, 2011
Saturday, May 28, 2011
You're a sly one, Misses G
Chloe was in the hospital December 2010 on her fist ever Christmas. The Children's Hospital in Colorado Springs set a standard for Santa that Greg and I will never be able to uphold. Her first introduction to Santa and the Grinch are always talked about when she thinks of that first stay in an United States Hospital.
Her love for Santa and Mr. Grinch are deeply entrenched.
Like Santa she loves to give.
Like the Grinch she is very sly.
She is feeling much better this morning. She still has orders for nothing by mouth which is extremely hard on her.
Chloe is in a constant state of thirst due to her kidney disease. At home she has a glass of ice water where ever she goes. I think it is interesting that the water has to be as cold as possible. In China, drinks are warm or hot. The water comes out of the water fountains hot for tea making. Chloe absolutely refuses to drink anything even the slightest bit warm. Unless, it is authentic Chinese green tea with no sweetener in it.
All yesterday, through the night and this morning she has been begging for water and ice.
She has been a little trooper, but nine days without food and water by mouth is hard to explain to a five year old.
This is where Misses G begins her sly plotting. She asked me for her hair to be washed this morning even though we had washed it twice yesterday and once the day before. She wanted to drink the water in the basin used to rinse her hair. Next, she demanded to be allowed to wash her face. I caught her several times sucking on the wash cloth. Finally, in a last ditch effort, she requested to brush her teeth. No, I have not caught on yet. As pride filled my bosom in my little girls personal hygiene skills, it quickly was deflated of its pride and filled with pain when she asked for a cup of water to rinse her mouth with. She will not give up and that is a good thing. I admire the strength of this 25 pound 37 inch butter bean!
Back to coloring Sponge Bob pictures for her to keep her mind off her cavernous empty stomach.
Many Blessings and Lots of Love,
Amy
Her love for Santa and Mr. Grinch are deeply entrenched.
Like Santa she loves to give.
Like the Grinch she is very sly.
She is feeling much better this morning. She still has orders for nothing by mouth which is extremely hard on her.
Chloe is in a constant state of thirst due to her kidney disease. At home she has a glass of ice water where ever she goes. I think it is interesting that the water has to be as cold as possible. In China, drinks are warm or hot. The water comes out of the water fountains hot for tea making. Chloe absolutely refuses to drink anything even the slightest bit warm. Unless, it is authentic Chinese green tea with no sweetener in it.
All yesterday, through the night and this morning she has been begging for water and ice.
She has been a little trooper, but nine days without food and water by mouth is hard to explain to a five year old.
This is where Misses G begins her sly plotting. She asked me for her hair to be washed this morning even though we had washed it twice yesterday and once the day before. She wanted to drink the water in the basin used to rinse her hair. Next, she demanded to be allowed to wash her face. I caught her several times sucking on the wash cloth. Finally, in a last ditch effort, she requested to brush her teeth. No, I have not caught on yet. As pride filled my bosom in my little girls personal hygiene skills, it quickly was deflated of its pride and filled with pain when she asked for a cup of water to rinse her mouth with. She will not give up and that is a good thing. I admire the strength of this 25 pound 37 inch butter bean!
Back to coloring Sponge Bob pictures for her to keep her mind off her cavernous empty stomach.
Many Blessings and Lots of Love,
Amy
Friday, May 27, 2011
Gloom, despair and agony on me
No, not here.
Chloe did have a blockage and they have removed the section of her bowel causing the problem. However, in correcting the problem, they had to remove the mitrofanoff. The mitrofanoff was put in place to allow Chloe more freedom. She would be able to drain her bladder through a stoma in her belly button. We tried to give her everything but unfortunately that was not the case. Of the three procedures performed, if one had to fail we would have picked the mitrofanoff. As she grows older, if she chooses to have the operation herself to make another mitrofanoff we will support her. But, I would never chose to do this operation just for the sake of convenience. We had to perform the bladder augmentation to save her life so why not give her as much freedom as possible since we were operating. As our surgeon said, he can not improve on what was put in place naturally and he did not.
Chloe had a rough night. Her temperature went up to 103.5 and we had to give her cold water baths much of the night. She got about 3 hours of sleep last night but is doing better this morning. During the operation, they inserted a peripherally inserted central catheter, PIC, to start giving her high protein, fat, vitamin and mineral meals directly into her veins. She is a bit honorery because she can not have water and is now once again pulling off her leads in protest. She is feeling better to have the energy to get into trouble!
The doctors were so apologetic and distraught over the whole course of events for Chloe. Greg and I, although extremely concerned over our daughter, were in the center of God's Peace, Love and Care.
The surgeon just left the room a few minutes ago. He has come up so many times to check on her. He is checking in one last time before he goes out of town for a conference. We will be under the wonderful care of another surgeon but our urologist said when we returns he wants to see Chloe sitting up in bed, eating and smiling. I plan on seeing that happen for him.
He also told me that he is going to have Greg talk to other families. He has discovered what I knew all along. I have a great man full of love, common sense, compassion and faith.
We were told by a dear person in my life that our lives would reflect the love of Jesus to our surgeon and I think God allowed me to see this to confirm that He is here and has been here with us all along.
I am still waiting to see what God works out with the Bulldog puppies!
Chloe did have a blockage and they have removed the section of her bowel causing the problem. However, in correcting the problem, they had to remove the mitrofanoff. The mitrofanoff was put in place to allow Chloe more freedom. She would be able to drain her bladder through a stoma in her belly button. We tried to give her everything but unfortunately that was not the case. Of the three procedures performed, if one had to fail we would have picked the mitrofanoff. As she grows older, if she chooses to have the operation herself to make another mitrofanoff we will support her. But, I would never chose to do this operation just for the sake of convenience. We had to perform the bladder augmentation to save her life so why not give her as much freedom as possible since we were operating. As our surgeon said, he can not improve on what was put in place naturally and he did not.
Chloe had a rough night. Her temperature went up to 103.5 and we had to give her cold water baths much of the night. She got about 3 hours of sleep last night but is doing better this morning. During the operation, they inserted a peripherally inserted central catheter, PIC, to start giving her high protein, fat, vitamin and mineral meals directly into her veins. She is a bit honorery because she can not have water and is now once again pulling off her leads in protest. She is feeling better to have the energy to get into trouble!
The doctors were so apologetic and distraught over the whole course of events for Chloe. Greg and I, although extremely concerned over our daughter, were in the center of God's Peace, Love and Care.
The surgeon just left the room a few minutes ago. He has come up so many times to check on her. He is checking in one last time before he goes out of town for a conference. We will be under the wonderful care of another surgeon but our urologist said when we returns he wants to see Chloe sitting up in bed, eating and smiling. I plan on seeing that happen for him.
He also told me that he is going to have Greg talk to other families. He has discovered what I knew all along. I have a great man full of love, common sense, compassion and faith.
We were told by a dear person in my life that our lives would reflect the love of Jesus to our surgeon and I think God allowed me to see this to confirm that He is here and has been here with us all along.
I am still waiting to see what God works out with the Bulldog puppies!
Thursday, May 26, 2011
Surgery
Chloe has had several wonderful people working tirelessly as a group today to figure out what is going on with her little body.
Her digestive system is not able to get anything from her stomach into her small intestine.
She has lost weight. Weight she did not have to lose. Her hair is falling out. Hair that she wanted to grow long. She is in much pain. A far cry from the little trickster she is at home.
She was just taken back to surgery to determine if she has a blockage. The procedure should take about 2 hours.
I have Greg, Nathan, Raeya and Daisy the pregnant bulldog here with me. Balin is spending the night with a friend.
The team of doctors here are wonderful. We have had such great care from house keeping, volunteers, CNA's, nurses, doctors, of course the Harley Davidson Rocky Mountain Riders and friends and neighbors that generously offered to take our kids to school at 8am when their children did not need to go to school, or the dad that picked my kids up from school on a day his daughter was not in school. Most importantly however, Chloe is in the hands of our Lord Jesus Christ.
We love Him, honor Him, and praise Him through all of this.
Her digestive system is not able to get anything from her stomach into her small intestine.
She has lost weight. Weight she did not have to lose. Her hair is falling out. Hair that she wanted to grow long. She is in much pain. A far cry from the little trickster she is at home.
She was just taken back to surgery to determine if she has a blockage. The procedure should take about 2 hours.
I have Greg, Nathan, Raeya and Daisy the pregnant bulldog here with me. Balin is spending the night with a friend.
The team of doctors here are wonderful. We have had such great care from house keeping, volunteers, CNA's, nurses, doctors, of course the Harley Davidson Rocky Mountain Riders and friends and neighbors that generously offered to take our kids to school at 8am when their children did not need to go to school, or the dad that picked my kids up from school on a day his daughter was not in school. Most importantly however, Chloe is in the hands of our Lord Jesus Christ.
We love Him, honor Him, and praise Him through all of this.
Terms of Endearment
I love calling my children honey, sweet pea, sweetie, sugar pie, etc....
The other day in the car Chloe combined all those names together to make one really long name for me. It made my heart smile.
I have noticed with Chloe more than my other three children how much she wants to be like me. Copying the big evident things about me as well as the small insignificant ones.
Flattering.
Scary.
Convicting.
It made me shutter when I realized this is how it should be with Jesus. We should want to hang on to every word, action, and emotion he displayed. It has made for a closer walk with Him for me.
We have a new name to add to our list of "love" words after this hospital stay. One of the dear nurses called Chloe Butter Bean. Now, if that is not a good southern term of endearment I do not know what is.
Another place I learned some new terms of endearment were in China. Our guide in China, Isabel, laughed at me when I called Chloe sweet potato. I asked her what words were used in China to call someone they loved. She started laughing and said that the two most popular words were Doodoo and Dodo.
We have brought back many cultural things from China that we cherish and share with our Asian daughters.
Doodoo and Dodo are not two of those things.
So, my little Butter Bean had another hard night. The two enemas gave her some relief yesterday and allowed her to rest but we are back to square one again without her bowels moving again. She got so upset in the middle of the night that she pulled out her mitrofanoff tubing. She was really upset when the nurses had to insert the 12 inches of tubing back through her belly button into her bladder. We are waiting for the enema order to come through so we can get her some relief again.
I was once hoping to take her home on Friday but now I hope for Saturday.
All in His time.
The other day in the car Chloe combined all those names together to make one really long name for me. It made my heart smile.
I have noticed with Chloe more than my other three children how much she wants to be like me. Copying the big evident things about me as well as the small insignificant ones.
Flattering.
Scary.
Convicting.
It made me shutter when I realized this is how it should be with Jesus. We should want to hang on to every word, action, and emotion he displayed. It has made for a closer walk with Him for me.
We have a new name to add to our list of "love" words after this hospital stay. One of the dear nurses called Chloe Butter Bean. Now, if that is not a good southern term of endearment I do not know what is.
Another place I learned some new terms of endearment were in China. Our guide in China, Isabel, laughed at me when I called Chloe sweet potato. I asked her what words were used in China to call someone they loved. She started laughing and said that the two most popular words were Doodoo and Dodo.
We have brought back many cultural things from China that we cherish and share with our Asian daughters.
Doodoo and Dodo are not two of those things.
So, my little Butter Bean had another hard night. The two enemas gave her some relief yesterday and allowed her to rest but we are back to square one again without her bowels moving again. She got so upset in the middle of the night that she pulled out her mitrofanoff tubing. She was really upset when the nurses had to insert the 12 inches of tubing back through her belly button into her bladder. We are waiting for the enema order to come through so we can get her some relief again.
I was once hoping to take her home on Friday but now I hope for Saturday.
All in His time.
Wednesday, May 25, 2011
Never been so happy to change a diaper
After an extremely hard night and day, we have finally made some progress this evening. Chloe is now resting peacefully after her meds and I have rejoicingly changed a diaper or two.
After the fact, I felt a little silly running down the hall and waving my arms over a diaper change. It was as if she had taken her first step. Come to think of it that is the next big step, a little step.
Her abdomen hurts so bad she is terrified to walk. She is learning to trust me through the pain. She is teaching me to trust through the pain as well.
We will still be here for another day or two because she has not taken anything by mouth as of yet. We have made so many friends and Chloe has touched so many. She is the 6th floor angel and the doctors favorite patient.
My little girl!
Thank you all for your prayers. They have been deeply felt today!
After the fact, I felt a little silly running down the hall and waving my arms over a diaper change. It was as if she had taken her first step. Come to think of it that is the next big step, a little step.
Her abdomen hurts so bad she is terrified to walk. She is learning to trust me through the pain. She is teaching me to trust through the pain as well.
We will still be here for another day or two because she has not taken anything by mouth as of yet. We have made so many friends and Chloe has touched so many. She is the 6th floor angel and the doctors favorite patient.
My little girl!
Thank you all for your prayers. They have been deeply felt today!
Restless days and sleepless nights
Prayers please as an estimated 5-7 days in the hospital turns to definitely 8 and probably 9. Chloe's intestines will just not wake up and move anything through. We are thankful and praising God that she is no longer throwing up the bile in her stomach and small intestines. Her tummy is so tight right now and you can see the coils of her intestines through her abdomen.
She asked me to sleep with her in her hospital bed last night and at 2:25am she reached over and took my hand and told me she loved me. That precious little girl is fighting and trying to get better.
One more prayer I would be most honored if you could remember for us. Daisy our English Bulldog was suppose to deliver her puppies between the 19th and 25th of this month. As I look at the date written on my dry erase board in Chloe's room, I am trusting God to work this timing out for us. Greg had to go back to work today, I am in Denver a little over an hour from home and we have two teenage boys who can not drive watching Daisy today but tomorrow they will have to be in school. My God is the same God as Elijah's so I know He can handle the delivery of a litter of puppies.
She asked me to sleep with her in her hospital bed last night and at 2:25am she reached over and took my hand and told me she loved me. That precious little girl is fighting and trying to get better.
One more prayer I would be most honored if you could remember for us. Daisy our English Bulldog was suppose to deliver her puppies between the 19th and 25th of this month. As I look at the date written on my dry erase board in Chloe's room, I am trusting God to work this timing out for us. Greg had to go back to work today, I am in Denver a little over an hour from home and we have two teenage boys who can not drive watching Daisy today but tomorrow they will have to be in school. My God is the same God as Elijah's so I know He can handle the delivery of a litter of puppies.
Tuesday, May 24, 2011
Have wagon? Will travel!
The night Chloe's body was protesting the operation and refusing her colon it's God given job, she was pulling at her leads monitoring her heart. We told her she needed to stop pulling at those or we would have to restrain her hands.
Since Chloe has spina bifida, we are unsure of how her spine was affected by the meningocele developed in utero or how her spine was affected during the removal of the meningocele. Thus we had to use the localized method of treating her pain instead of an epidural, the preferred way. In the middle of the night, obeying her mom by not touching her leads, Chloe chose to pull out two catheters administering pain medication on eash side of the incision.
Her decision to pull out those catheters and our decision not to go back to surgery to reinsert them has caused us to treat her pain with narcotics. Narcotics not only reduce the pain but puts her whole system to sleep. The same system we are trying to wake up and get operating again due to the surgery.
We have found some wonderful stalling techniques to lengthen the time between administering the pain meds so we can her digestive tract back to normal as soon as possible; foot rubs and wagon rides.
I think everyone in the hospital knows us now. We clocked an hour and a half on one outing today. I have gotten quite proficient pulling both the wagon and the stand that holds her IV bags. One thing that would make it easier is a four wheel drive wagon. My trailer backing skills are just not to the level yet that I can back into the waiting elevator without bumping into a wall or running over passengers' toes.
One request for a specific prayer. When we left for our wagon trip Chloe had just had her vitals taken and everything was normal. When we returned, an hour and a half later her temperature ws 101.5. We are not sure what has caused this spike and your prayers for proper treatment would be much appreciated.
Many Blessings
Since Chloe has spina bifida, we are unsure of how her spine was affected by the meningocele developed in utero or how her spine was affected during the removal of the meningocele. Thus we had to use the localized method of treating her pain instead of an epidural, the preferred way. In the middle of the night, obeying her mom by not touching her leads, Chloe chose to pull out two catheters administering pain medication on eash side of the incision.
Her decision to pull out those catheters and our decision not to go back to surgery to reinsert them has caused us to treat her pain with narcotics. Narcotics not only reduce the pain but puts her whole system to sleep. The same system we are trying to wake up and get operating again due to the surgery.
We have found some wonderful stalling techniques to lengthen the time between administering the pain meds so we can her digestive tract back to normal as soon as possible; foot rubs and wagon rides.
I think everyone in the hospital knows us now. We clocked an hour and a half on one outing today. I have gotten quite proficient pulling both the wagon and the stand that holds her IV bags. One thing that would make it easier is a four wheel drive wagon. My trailer backing skills are just not to the level yet that I can back into the waiting elevator without bumping into a wall or running over passengers' toes.
One request for a specific prayer. When we left for our wagon trip Chloe had just had her vitals taken and everything was normal. When we returned, an hour and a half later her temperature ws 101.5. We are not sure what has caused this spike and your prayers for proper treatment would be much appreciated.
Many Blessings
BaBa
BaBa was allowed two more days off, Monday and Tuesday, so he was able to come and sit the whole day with Chloe. Oh, the smiles on Chloe's angelic little face. The whole 6th floor loves Chloe and her sweet smiles. Chloe made great advances with Baba. No different than when we were in China!
Chloe has been daddy's little girl from the very beginning. We found Chloe on the waiting child list 3 days before Greg was to deploy to Afghanistan. It was a whirlwind of getting Greg ready to leave as well as handling all the initial paperwork, consulting with doctors, but most importantly securing our knowledge that we were the family God had prepared for this little girl. Looking back on that time with the myriad of obstacles thrown in our path, I know evil was at work to divert us from the path God had shown us. Oh, the growing and lessons we have learned. Our faith is stronger and we are better people today.
We traveled to China in September to bring Chloe home. Chloe was brought into the hotel where we were staying. We were to wait in our room until they called us. We got the call and were so thankful we were only one floor down from the meeting room. We could not wait to meet our daughter. She was in her ayi's arms, with a handful of peanuts crying for her best friend. We were told she had gained about 5 pounds the month before we arrived because of her happiness that she was getting a family. Indeed she looked a lot different from the photos we had received of her. At that moment when she saw us in person for the first time, I think she would have given back all that extra food she had eaten if only she could go back to the orphanage to the safety of her three friends arms. In protest to being taken from "her original family", she decided she would not smile or talk to us. Well, not to me. It seemed whenever I left the room Chloe would become an entirely different little girl for her Baba. She would smile, giggle and tease her father relentlessly. That bond and mode of relating has remained to this day. Chloe and her Baba share many things, of which I am so thankful. They share the same birthday, love of football, love of motorcycles, teasing, and a need to be outside in God's beautiful creation. That is pretty much how they spent the day together yesterday and of that I am so grateful.
We were able to disconnect two different tubes of the seven she had initially and allow her to start taking 25ml an hour of water by mouth. Baby steps but steps in the right direction.
Chloe has been daddy's little girl from the very beginning. We found Chloe on the waiting child list 3 days before Greg was to deploy to Afghanistan. It was a whirlwind of getting Greg ready to leave as well as handling all the initial paperwork, consulting with doctors, but most importantly securing our knowledge that we were the family God had prepared for this little girl. Looking back on that time with the myriad of obstacles thrown in our path, I know evil was at work to divert us from the path God had shown us. Oh, the growing and lessons we have learned. Our faith is stronger and we are better people today.
We traveled to China in September to bring Chloe home. Chloe was brought into the hotel where we were staying. We were to wait in our room until they called us. We got the call and were so thankful we were only one floor down from the meeting room. We could not wait to meet our daughter. She was in her ayi's arms, with a handful of peanuts crying for her best friend. We were told she had gained about 5 pounds the month before we arrived because of her happiness that she was getting a family. Indeed she looked a lot different from the photos we had received of her. At that moment when she saw us in person for the first time, I think she would have given back all that extra food she had eaten if only she could go back to the orphanage to the safety of her three friends arms. In protest to being taken from "her original family", she decided she would not smile or talk to us. Well, not to me. It seemed whenever I left the room Chloe would become an entirely different little girl for her Baba. She would smile, giggle and tease her father relentlessly. That bond and mode of relating has remained to this day. Chloe and her Baba share many things, of which I am so thankful. They share the same birthday, love of football, love of motorcycles, teasing, and a need to be outside in God's beautiful creation. That is pretty much how they spent the day together yesterday and of that I am so grateful.
We were able to disconnect two different tubes of the seven she had initially and allow her to start taking 25ml an hour of water by mouth. Baby steps but steps in the right direction.
Sunday, May 22, 2011
Another sunny day
Finally we have had the two same nurses in a row for night shift and day shift. A familiar face is so comforting. Sadly Chloe did not have a familiar face during her many hospital stays in China. I absolutely loved her orphanage director, lao shui, and ayis but the orphanage needed every hand staffed there to take care of the children. Each time Chloe got sick, the orphanage would have to hire someone to go and sit with her. I now have a faint glimpse of how scary it must have been for her.
Chloe has had a good day and the sunshine and 77 degree weather outside reflected this. Her body has finally figured out that things must travel south and not north. We were able to load her up in a wagon with all the various tubes, bags and monitors connected to her for a ride through the hospital and outside to the walking area. Her cheeks are getting back some rosy color and she even asked for some spaghetti this evening. Doctor's orders are still nothing by mouth and she still has the NG, nasal/gastric, tube. I hope we can start feeding her clear liquids soon.
Tomorrow Greg will come and stay the day with Chloe while I will go home for the first time since Wednesday. I have to deliver a liter of puppies and love on my other three children a little. Daisy has held off delivering her liter and for this we are very thankful. We are hoping she will have them tomorrow so we can get them settled in before Greg has to go back to work and the boys start taking their exams. Bulldog puppies have to be attended to around the clock and we are short a couple hands now. Chloe is so excited about getting home and playing with them.
It is time for shift change here so I am going to introduce Chloe to another wonderful person.
Chloe has had a good day and the sunshine and 77 degree weather outside reflected this. Her body has finally figured out that things must travel south and not north. We were able to load her up in a wagon with all the various tubes, bags and monitors connected to her for a ride through the hospital and outside to the walking area. Her cheeks are getting back some rosy color and she even asked for some spaghetti this evening. Doctor's orders are still nothing by mouth and she still has the NG, nasal/gastric, tube. I hope we can start feeding her clear liquids soon.
Tomorrow Greg will come and stay the day with Chloe while I will go home for the first time since Wednesday. I have to deliver a liter of puppies and love on my other three children a little. Daisy has held off delivering her liter and for this we are very thankful. We are hoping she will have them tomorrow so we can get them settled in before Greg has to go back to work and the boys start taking their exams. Bulldog puppies have to be attended to around the clock and we are short a couple hands now. Chloe is so excited about getting home and playing with them.
It is time for shift change here so I am going to introduce Chloe to another wonderful person.
Saturday, May 21, 2011
I made it through the rain...
Wow, what a roller coaster we have been on the past two days. We were told in pre-op by the surgeon that the second day of recovery is often worse than the first. Chloe made it through the surgery with no major complications. We rejoiced and felt such a burden lifted from our shoulders. Greg and Raeya stayed at the hospital with Chloe and me for a couple of hours and then Greg took Raeya home to tuck into bed.
The next two days would prove very challenging. Chloe's digestive system was in turmoil and as I explain in the next paragraph what they did it is no wonder her little body does not know what to do. On day 1 in the evening Chloe's stomach began to get more and more distended and she was throwing up continuously. We tried three different NG tubes to no avail. A trip downstairs to x-ray proved the nurses had placed the NG tube correctly. As I sat in bed with her rubbing her tummy, I began to cry softly and then more vocally as I cried out to God, our Great Physician. He made Chloe's little body with all of its unique complexities. Spina Bifida has given her such a unique design. A design that I love dearly. Chloe's nasal gastric tube suddenly began to pull all of the bile our of her stomach. The doctors, nurses and residents were baffled but were relieved to go home with thoughts of success. We had a restful night and during doctor's call this morning the doctor's announced they thought she was going to pull through. This was announced just as the sun began to pull through the clouds of the past two cold, wet, rainy and hail filled days. Days that were physically filled with the distress of storm systems as well as days filled with the emotional distress of a mom and dad filled with concern for their Sovereign Jade. Thank you Heavenly Father.
We love our surgeon. He instills confidence of his abilities by his calm demeanor and endless knowledge. My one concern was that I wanted someone who acknowledged God as the creator of our little girl. On more than one meeting with the surgeon he talked about the human anatomy and the nerves of the spinal cord in terms of when we as humans walked on all fours. Greg and I prayed for the surgeons hands to be guided by our God and that he may be touched with the knowledge of God. As our surgeon works on Chloe, our Great Physician works on our surgeon.
Chloe's operation involved cutting her bladder open. She had a section of colon cut out and sewn into the top of her bladder to enlarge it. Our hope is that will reduce the pressure in her bladder. Pressure that also travels back up to her kidneys and causes high pressure and damage there. She also had her appendix removed from the colon to be used to make a conduit from her bladder to her belly button to drain her bladder. The appendix was also used to make a conduit from her colon to the surface of her skin to flush her colon.
We hope this will stop the damage being done to her kidneys as well as giving her more control over her bladder and bowels.
The next two days would prove very challenging. Chloe's digestive system was in turmoil and as I explain in the next paragraph what they did it is no wonder her little body does not know what to do. On day 1 in the evening Chloe's stomach began to get more and more distended and she was throwing up continuously. We tried three different NG tubes to no avail. A trip downstairs to x-ray proved the nurses had placed the NG tube correctly. As I sat in bed with her rubbing her tummy, I began to cry softly and then more vocally as I cried out to God, our Great Physician. He made Chloe's little body with all of its unique complexities. Spina Bifida has given her such a unique design. A design that I love dearly. Chloe's nasal gastric tube suddenly began to pull all of the bile our of her stomach. The doctors, nurses and residents were baffled but were relieved to go home with thoughts of success. We had a restful night and during doctor's call this morning the doctor's announced they thought she was going to pull through. This was announced just as the sun began to pull through the clouds of the past two cold, wet, rainy and hail filled days. Days that were physically filled with the distress of storm systems as well as days filled with the emotional distress of a mom and dad filled with concern for their Sovereign Jade. Thank you Heavenly Father.
We love our surgeon. He instills confidence of his abilities by his calm demeanor and endless knowledge. My one concern was that I wanted someone who acknowledged God as the creator of our little girl. On more than one meeting with the surgeon he talked about the human anatomy and the nerves of the spinal cord in terms of when we as humans walked on all fours. Greg and I prayed for the surgeons hands to be guided by our God and that he may be touched with the knowledge of God. As our surgeon works on Chloe, our Great Physician works on our surgeon.
Chloe's operation involved cutting her bladder open. She had a section of colon cut out and sewn into the top of her bladder to enlarge it. Our hope is that will reduce the pressure in her bladder. Pressure that also travels back up to her kidneys and causes high pressure and damage there. She also had her appendix removed from the colon to be used to make a conduit from her bladder to her belly button to drain her bladder. The appendix was also used to make a conduit from her colon to the surface of her skin to flush her colon.
We hope this will stop the damage being done to her kidneys as well as giving her more control over her bladder and bowels.
Friday, May 20, 2011
Surgery
The day of the surgery, Chloe and I drove to Denver and Greg took care of getting the boys and Raeya to school. Chloe and I sang all the way. I am glad someone likes my voice. She was so excited about the possibility of being able to wear underwear. Oh, the things we take for granted. It was a blessing to sing "Old McDonald, Itsy Bitsy Spider, Jesus Loves the Little Children, etc....It helped to ease the anxiety and wash some of the stress of the month away. This month, with the upcoming operation, a dog ready to deliver puppies, the whole house getting not one but two viruses the week before Chloe had surgery has been a little hard. God protected Chloe. She was spared both viruses and was able to have the surgery as scheduled. The rest of family was able to get the "illness" out of the way so we can better serve Chloe through the next 3 months of recovery.
The surgery went smoothly. For my spina bifida friends, we had the bladder augmentation, ACE procedure and Mitrofanoff procedure. The bladder augmentation was detrimental to her health, the ACE procedure was necessary but we elected to do the Mitrofanoff. Our surgeon told us he could not make anything better than what nature had made but we thought the Mitrofanoff would make life easier for Chloe in the years to come.
My little girl has been rearranged on the inside and her body is struggling to understand what happened and to heal. Not to different from seven months ago when her emotional life was rearranged due to adoption. She has healed, bloomed and has gladly accepted her status as a daughter and no longer an orphan. I know her physical body will do the same.
The surgery went smoothly. For my spina bifida friends, we had the bladder augmentation, ACE procedure and Mitrofanoff procedure. The bladder augmentation was detrimental to her health, the ACE procedure was necessary but we elected to do the Mitrofanoff. Our surgeon told us he could not make anything better than what nature had made but we thought the Mitrofanoff would make life easier for Chloe in the years to come.
My little girl has been rearranged on the inside and her body is struggling to understand what happened and to heal. Not to different from seven months ago when her emotional life was rearranged due to adoption. She has healed, bloomed and has gladly accepted her status as a daughter and no longer an orphan. I know her physical body will do the same.
Thursday, May 19, 2011
Time is running out
Chloe was truly running out of time. Before her adoption, we requested all the medical information she had while in China. All these documents were sent to the spina bifida clinic and we received a positive prognosis for how we could help her. However, Chloe had kidney disease that had gone undiagnosed by many until she got extremely sick over Christmas 2010, two months after getting her home. At the age of 5 she had already lost 30% of her kidney function and would continue to digress unless something was done. Our urologist said we needed to operate as soon as possible. God had truly laid a little girl on our hearts that needed a chance outside her beautiful native country. We have been so blessed and humbled to answer the calling.
Soveriegn Jade...our Chloe
Chloe is our third child by age but the fourth child to join our family. She was adopted on 24 September 2010. With this adoption, we wanted to be able to participate more in choosing our child. We chose an agency that would allow us to petition for the child God laid upon our hearts. Chloe's referral picture was taken when she was 2 years old. A picture that was almost three years old when we spotted her on the waiting child listing. She looked sad and was said to be introverted, liked books and blocks. We are a family that loves to laugh, read and be creative. What a great fit we would be for her. Also, one more introverted family member would balance our the two extroverts we had in the family. More introverts equals a home that is quieter, calming and soothing right?
Chloe's personality was not only described to us in her report but her physical status was also described. Chloe's "special need" came second in our considerations. We knew we had to be comfortable with our ability to meet her needs. However, going into the this process for a second time we wanted to adopt a child that other adoptive families were shying away from. We wanted to give a child a chance who was running out of time. Little did we know the opportunities God would allow us to fulfill for this child of His.
Chloe's personality was not only described to us in her report but her physical status was also described. Chloe's "special need" came second in our considerations. We knew we had to be comfortable with our ability to meet her needs. However, going into the this process for a second time we wanted to adopt a child that other adoptive families were shying away from. We wanted to give a child a chance who was running out of time. Little did we know the opportunities God would allow us to fulfill for this child of His.
Only.....
We are a family of six. I remember when our two biological children were toddlers and people would ask, "How many children do you have?" I always replied, "Only two." My husband, Greg, and I were content with our rough and tumble boys. Greg was an only child and I had only one sibling so we felt "normal" with our procreation. However, Greg and I are by no means "normal" nor have we been called to be "normal."
We have added two more children to our family through adoption. Now, when asked, "How many children do you have?", I still answer, "Only four."
Adoption has been the greatest blessing God has bestowed upon our lives. Through this blog I would like to share about our family, faith, and the future God is calling us toward.
I pray others may find something here to make them laugh, cry, find hope but most importantly find their future. A future that continually reshapes and redirects as we grow.
We have added two more children to our family through adoption. Now, when asked, "How many children do you have?", I still answer, "Only four."
Adoption has been the greatest blessing God has bestowed upon our lives. Through this blog I would like to share about our family, faith, and the future God is calling us toward.
I pray others may find something here to make them laugh, cry, find hope but most importantly find their future. A future that continually reshapes and redirects as we grow.
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