I'm so sorry I didn't post earlier. I've been so sick that I really haven't left the bed today, except to go to a closing this morning (yes, in the midst of all this we decided to refinance our mortgage).
Dr. Romp called today to tell us that the meeting went well and all of the Dr.'s were in agreement that they should proceed with the VSD closure on Wednesday. This is great news really, and an answer to prayer that all of the Dr.'s agreed on this decision.
We will be checking in to the University Hospital between 10:00 and 12:00 on Tuesday morning and the surgery will take place on Wednesday. I'm thinking we will be in the hospital for 4-5 days probably? But I'm not exactly sure.
Thank you all for your prayers and for your offers to help. We will probably take you up on your offers :) The plan as of now is for Aaron and I to be at the hospital together Tuesday night and Wednesday...he'll definitely stay until we know that YouYou is stable. Then I will probably stay at the hospital the rest of the time while Aaron spends the evenings here with the boys. We are really glad that the surgery will be at the same hospital where the cath took place because YouYou was very comfortable there, they had a nice playroom, wireless internet in the rooms, a laundry facility, kitchen, the nurses were great, etc.
I'll post again soon...
Friday, February 27, 2009
Thursday, February 26, 2009
Prayers for Friday
I wanted to let you all know that we were able to come home last night. We got home around 9:30 and YouYou slept through the night. She seems a little fussy this morning so I think we will give her some Tylenol (they said the wound on her leg might be a little sore for a few days).
I'm headed to the Dr. in just a few minutes. You know I'm sick when I leave my house without a shower, without makeup, without fixing my hair...I might brush my teeth but that will be all. Aaron is taking care of the kids today so hopefully I can just rest.
So we are through the first step! Praise the Lord! I wish how many steps we had to go, but I will just take it one day at a time. My sweet friend Carolyn often reminds me that sometimes you just have to take it one minute at a time. The next big event is the meeting that the Dr.'s are having on Friday. I don't know what time, but Dr. Romp did say he would call me sometime on Friday to let me know what their decision is. I think Aaron layed it out pretty clearly, but the three treatments/surgeries they will discuss are 1)the band, least invasive but still risky, 2) OHS to close the VSD, and 3) wait, research the double switch more and probably get second opinions from Dr.'s in Boston.
Please pray that the Dr.'s will be in agreement and that they will be given wisdom from the Lord.
Thank you! Thank you! Thank you!
Erica
P.S. I apologize for the bad table manners YouYou was displaying in the video I posted yesterday. We still have some things to work on :)
I'm headed to the Dr. in just a few minutes. You know I'm sick when I leave my house without a shower, without makeup, without fixing my hair...I might brush my teeth but that will be all. Aaron is taking care of the kids today so hopefully I can just rest.
So we are through the first step! Praise the Lord! I wish how many steps we had to go, but I will just take it one day at a time. My sweet friend Carolyn often reminds me that sometimes you just have to take it one minute at a time. The next big event is the meeting that the Dr.'s are having on Friday. I don't know what time, but Dr. Romp did say he would call me sometime on Friday to let me know what their decision is. I think Aaron layed it out pretty clearly, but the three treatments/surgeries they will discuss are 1)the band, least invasive but still risky, 2) OHS to close the VSD, and 3) wait, research the double switch more and probably get second opinions from Dr.'s in Boston.
Please pray that the Dr.'s will be in agreement and that they will be given wisdom from the Lord.
Thank you! Thank you! Thank you!
Erica
P.S. I apologize for the bad table manners YouYou was displaying in the video I posted yesterday. We still have some things to work on :)
Wednesday, February 25, 2009
Laying still??
Well, not so much :)
They are going to assess the situation around 7:30 to see if we can go home. Aaron is working from home tomorrow morning so that I can go to the Dr. My throat is on fire and my ears are killing me.
Thank you so much for your prayers today. We have felt them!
Love you all,
Erica
Heart Catheterization Update
This is Aaron talking (Erica is feeling sick and trying to take care of YouYou)...
YouYou's heart catheterization went smoothly and the Drs. were able to get the information they wanted. We are currently about 3 hours into a 6 hour observation period and trying to keep YouYou as still as possible (yeah, its not working really well).
So what's the way forward? Dr. Romp stopped by about an hour after the cathe and discussed with us what they had seen. First a little background on why they were doing the cathe. VSD (a hole in the heart) increases the pressure at which the heart pumps blood into the lungs. Normally this is corrected in the US before a child is 8 months old to prevent permanent damage to the lungs. Damage occurs because the elevated pressures cause the capillaries (tiny blood vessels) in the lungs to build up scar tissue. Too much scar tissue means the blood is not picking up the oxygen it needs from the lungs. If the damage is severe enough and because it is irreversible, your options are very limited - ie lung transplant.
So how does the cathe help us know what to do? The cathe measures pressures in different areas around the heart, so it can tell how much pressure is going into the lungs as well as the resistance the lungs are putting up. It is the resistance that is the key, the more resistance the more damage. So the Drs. first measured the pressure YouYou's heart was placing on her lungs as well as the resistance to that pressure from the lungs. Both the pressure and the resistance were elevated which is not what we (us/the Drs) wanted to see, but it is what the Drs had expected. A second test they do is they give YouYou medicine that reduces the pressure from her heart to see if the lungs will then also lessen their resistance which they did. This was a positive sign. If the lungs had not changed their resistance we would be talking about the limited options mentioned above. As it is, the Drs. will be discussing this Friday exactly what they want to do next Wednesday.
So what are the options for Wednesday? The most invasive, complex option would be to do open heart surgery, close the VSD and do a double switch at the same time to try and address her ventricle inversion as well. Dr. Romp is not in favor of this one (and frankly neither are we), he feels that we need to first address the potential threat to the lungs and get that situation stabilized first. Then down the road we will address the ventricle inversion. The second option is to do open heart surgery and just correct the VSD. This is not a small operation either. It is open heart surgery, her heart will be bypassed and she will be on a ventilator. If all goes well this should help stabilize the pressue in her heart and there is a chance that the damage that has been done to her lungs will correct itself over time. The final option is the least invasive, they would put a band around the Pulmonary artery which pumps blood to the lungs to lower the pressure. The trick here is getting the tension just right on the band - too high and it isn't helping the lungs, too low and there isn't enough blood getting to the lungs. While this is the least evasive of the 3 options we believe it still means opening up her chest (we are going to confirm this) and it was still major surgery according to the Drs.
So at this point our prayer is 3 fold. First a prayer of thanksgiving that YouYou's lungs aren't worse then they are and we have a good chance of stopping the damage. Second a prayer to give the Drs wisdom as they discuss her case that they would decide upon the surgery. Continued strength for YouYou and the rest of the family as we go through this together.
They are done..
A nurse just came in to tell us that they are done and it went well. They are going to come get us in a few minutes to let us go to the recovery room. I'll post when we get back to the room..
Thank you Lord for a smooth procedure! God is good...
Thank you Lord for a smooth procedure! God is good...
You You didn't shed a tear!
Hi everyone, it is Emily. Erica just called to let me know that You You was taken back for her heart cath at 10:00. The nurses had given her some "happy juice" so she did not cry when they took her back. They also had given her a little toy that made noise and she was content to play with that.
Aaron and Erica went down to grab a bite to eat while she is having the heart cath. They expect it to take about an hour and a half. She will update us as soon as she can. Thank you for lifting up little You You in prayer.
Aaron and Erica went down to grab a bite to eat while she is having the heart cath. They expect it to take about an hour and a half. She will update us as soon as she can. Thank you for lifting up little You You in prayer.
We're Here
We are in the playroom now waiting on them to tell us it is time for the "happy juice". We arrived a little before 7:00. We've seen Dr. Romp (her pediatric cardiologist), Dr. Law (the Dr. that will perform the heart cath) and numerous friendly nurses and other staff. The theme we are hearing, which we knew already, is that YouYou is very unique. The issues she has are so very rare, in fact the leading Dr. in Boston who deals with ventricular inversion has only performed 40 surgeries on children like her (that is 40 total, not 40 in a year). But none of this is new to our Heavenly Father! He created her, He knit her together, and He has brought her to us...and that gives us hope.
We have a private room with internet access and I will update as often as possible.
Thank you for standing with us in prayer...
We have a private room with internet access and I will update as often as possible.
Thank you for standing with us in prayer...
Tuesday, February 24, 2009
Heart Cath tomorrow...
YouYou is scheduled for a heart cath tomorrow morning. We have to arrive between 6:30 and 7:00 am and we are the 3rd "in line". After we are admitted we will be taken to a private room to wait, and we will wait there during the procedure. I'm hoping we have internet access in the room because I want to be able to update this blog :) The actuall procedure should only take an 1.5 or so because they are just taking measurements and pictures, not actually correcting anything. We should know the results before we leave. We were told to be prepared to spend the night, but we MIGHT get to come home that evening. She is at a slightly higher risk for complications because of her multiple issues so that might mean we have to stay overnight. We'll do whatever they think is best for YouYou!
Specific prayer requests...
- that the procedure will go smoothly, without any complications
- that they will find the pressures in her lungs to be low
- that YouYou will not be anxious and that we can comfort her once she is awake
- that we will be witnesses of the miracle and wonder of adoption to everyone we meet
Be strong and of good courage ... fear not, nor be dismayed; for the Lord God, even my God, will be with thee; He will not fail thee, nor forsake thee.1 CHRONICLES 28:20
Specific prayer requests...
- that the procedure will go smoothly, without any complications
- that they will find the pressures in her lungs to be low
- that YouYou will not be anxious and that we can comfort her once she is awake
- that we will be witnesses of the miracle and wonder of adoption to everyone we meet
Be strong and of good courage ... fear not, nor be dismayed; for the Lord God, even my God, will be with thee; He will not fail thee, nor forsake thee.1 CHRONICLES 28:20
Monday, February 23, 2009
The Story of "YouYou"
My husband and I were called to adopt in September of 2005 as we were praying about how we might want to expand our family. We were blessed with 2 biological children(one in 2003 and one in 2004) but we knew we wanted more children should the Lord allow. We were in church one Sunday morning when Aaron's dad began praying that Christian families would open their hearts to adopt the many orphans in Nepal. We had not made it to Sunday School that morning, so we did not hear the guest speaker from Nepal talk about his ministry to the orphans in Nepal, but as Aaron's dad was praying I honestly felt like God said to me "You should be one of those families". During the prayer, Aaron put his arm around me (which may not sound unusual, but he rarely does this during church). As soon as the prayer was over I looked at Aaron and
whispered, "Maybe we are supposed to adopt one of those children". I will never forget the look on his face and the words that came out of his mouth. He said, "I was just praying that if God was speaking to you about adopting a child like he was to me, that you would bring up the topic to me". Well, that is exactly what I had done! Praise the Lord for this confirmation!
After much prayer and research we felt like we were being led to adopt from China. We finally started the paperwork in June of 2006 (which later became a significant date as this was the month our little girl was born). By December of 2006 my husband and I were both in agreement that we wanted to adopt a child that had some type of medical need. After a few delays our dossier was logged in with the CCAA on March 2, 2007 with a request that we be matched with a child with a heart condition. While we waited for the CCAA to make a direct match for us, we were also eligible to be matched with a child from our agency's list of children with medical needs. We waited and waited, for what at thetime seemed like forever. Our agency went from getting lists of children every few months, to only receiving a list two times in a year. Then in early 2008 we learned that our agency would soon be given access to the new "shared list", which was a list of 100's of children that lots of different adoption agency's had access to at the same time.
On Monday, August 4th, 2008 we received the phone call that would forever change our lives. Our wonderful social worker called and I remember the first thing she asked me was "Are you at home?" I knew then that this was an important phone call. She told me that she had been praying over the file of a child and she felt like she was supposed to call me. She then proceeded to tell me a few of the details like, it was a girl, she was 2, and she had a heart condition - and then she asked me if I wanted to lock the file (meaning no other family could review the file and we would have 48 hours to submit a letter of intent stating that we wanted to adopt her). I said "Yes, of course!". We talked for a few more minutes and then she told me she would be sending me the entire file through email and that I should go ahead and call my husband. I hung up and called him. My sweet husband says he knew something was up as soon as I started talking - he could just hear it in my voice. I told him our social worker had locked a file for us, it was a girl, she was 2, and she had a heart condition...and his exact words were, "Okay, when can we go get her!"
The next 2 days were a blur as we talked to different doctors and tried to quickly gather all of the necessary items so that we could officially ask China if we could be this child's parent's. This was an exciting time, but also a little scary as there were several things in her file that were unclear. We both felt at peace about the decision to proceed though so our Letter of Intent was sent on August 6th (my youngest son's 4th birthday and first day of preschool). We waited, not so patiently at times, for China to give us Pre-approval but because of the Olympics it took a few more days than we expected. Finally on September 5th, aprox 4 weeks after we saw our daughter's face for the first time, we received pre approval and were able to announce it to all of our friends and family that "WE HAD A DAUGHTER!!!"
Once we received pre-approval we were given permission to send our new daughter a care package and then we waited, for our agency to receive an update. During this time I prayed and wondered each day whether or not she was being well fed and cared for. I wondered about her little heart, both physically and emotionally. Then in early October, actually two months to the day that we first saw our daughter's picture, we were given another gift through our wonderful social worker. She called to tell us that she had an email address of and English speaking person who was somehow connected to our daughter's orphanage and we had been given permission to
contact her. Amazingly enough, we learned through this email coorespondence that our daughter was not in a typical orphanage anymore. She had been transferred to a place called True Children's Home when she was 11 months old. We learned that she was being well cared for and that she had been moved to foster care earlier that year. But even more amazing, we learned that this English speaking person's sister actually lived in our town! She was even married to the pastor of the church that my husband and I got married in 10 years earlier! For two months I had been worrying that with each passing day our little girl's heart condition might be making her sicker and sicker. For two months I had been wondering whether or not I would get any more pictures or updates on our daughter before we travel. For two months I had been praying that somehow, someway, in a manner that only God could ordain, that this precious little one's heart and mind would be prepared so that when she met us she would know that we were safe, and that we would love her forever. Well God showed up big - I got many, many pictures and updates on our daugher, she was receiving great medical care, and she was being prepared to meet us. Right then I felt like He whispered in my ear, "See my daughter...I have been with you both all along."
We do not know why our daughter's paperwork did not mention that she had been sent from her original orphanage to True Children's Home. But we definitly know that it taught us to trust Him even more. Our Faith was increased during those two months as each time the worries and doubts crept in we had to turn it all over to our Heavenly Father and He simply said...trust me.
Our trip of a lifetime took place at the beginning of January 2009 as we travelled to China to meet our precious "YouYou". She is just perfect for our family and we enjoyed getting to know her better every day.
We arrived home on January 22nd to begin our life at home as a family of five! On February 6th we had our first appointment with a pediatric cardiologist and we were able to learn a lot more about YouYou's heart condition. She has several problems with her heart, but the two most threatening issues are a moderate to large VSD and Ventricular Inverson (also called Congenitally Corrected Transposition of the Great Arteries, or L-type Transposition). We are scheduled for a heart cath on Wednesday February 25th so that the Dr.'s can determine whether or not she is a candidate for heart surgery to close the VSD. They are hopeful that the pressures in her lungs are not too high so they have already gotten her on the schedule for Open Heart Surgery the following week (Wednesday, March 4th). The VSD surgery will greatly improve YouYou's health but it will not fix the problem with her ventricles being reversed. We are praying that technology will improve before she needs to have this corrected because the only surgery to fix this right now is highly controversial and risky. But we know the Great Physician personally so we put our trust in Him!
We plan on updating this blog with all of YouYou's medical information, especially during her heart cath and surgery. Thank you for standing in prayer alongside us. May God receive all Glory and Honor...
whispered, "Maybe we are supposed to adopt one of those children". I will never forget the look on his face and the words that came out of his mouth. He said, "I was just praying that if God was speaking to you about adopting a child like he was to me, that you would bring up the topic to me". Well, that is exactly what I had done! Praise the Lord for this confirmation!
After much prayer and research we felt like we were being led to adopt from China. We finally started the paperwork in June of 2006 (which later became a significant date as this was the month our little girl was born). By December of 2006 my husband and I were both in agreement that we wanted to adopt a child that had some type of medical need. After a few delays our dossier was logged in with the CCAA on March 2, 2007 with a request that we be matched with a child with a heart condition. While we waited for the CCAA to make a direct match for us, we were also eligible to be matched with a child from our agency's list of children with medical needs. We waited and waited, for what at thetime seemed like forever. Our agency went from getting lists of children every few months, to only receiving a list two times in a year. Then in early 2008 we learned that our agency would soon be given access to the new "shared list", which was a list of 100's of children that lots of different adoption agency's had access to at the same time.
On Monday, August 4th, 2008 we received the phone call that would forever change our lives. Our wonderful social worker called and I remember the first thing she asked me was "Are you at home?" I knew then that this was an important phone call. She told me that she had been praying over the file of a child and she felt like she was supposed to call me. She then proceeded to tell me a few of the details like, it was a girl, she was 2, and she had a heart condition - and then she asked me if I wanted to lock the file (meaning no other family could review the file and we would have 48 hours to submit a letter of intent stating that we wanted to adopt her). I said "Yes, of course!". We talked for a few more minutes and then she told me she would be sending me the entire file through email and that I should go ahead and call my husband. I hung up and called him. My sweet husband says he knew something was up as soon as I started talking - he could just hear it in my voice. I told him our social worker had locked a file for us, it was a girl, she was 2, and she had a heart condition...and his exact words were, "Okay, when can we go get her!"
The next 2 days were a blur as we talked to different doctors and tried to quickly gather all of the necessary items so that we could officially ask China if we could be this child's parent's. This was an exciting time, but also a little scary as there were several things in her file that were unclear. We both felt at peace about the decision to proceed though so our Letter of Intent was sent on August 6th (my youngest son's 4th birthday and first day of preschool). We waited, not so patiently at times, for China to give us Pre-approval but because of the Olympics it took a few more days than we expected. Finally on September 5th, aprox 4 weeks after we saw our daughter's face for the first time, we received pre approval and were able to announce it to all of our friends and family that "WE HAD A DAUGHTER!!!"
Once we received pre-approval we were given permission to send our new daughter a care package and then we waited, for our agency to receive an update. During this time I prayed and wondered each day whether or not she was being well fed and cared for. I wondered about her little heart, both physically and emotionally. Then in early October, actually two months to the day that we first saw our daughter's picture, we were given another gift through our wonderful social worker. She called to tell us that she had an email address of and English speaking person who was somehow connected to our daughter's orphanage and we had been given permission to
contact her. Amazingly enough, we learned through this email coorespondence that our daughter was not in a typical orphanage anymore. She had been transferred to a place called True Children's Home when she was 11 months old. We learned that she was being well cared for and that she had been moved to foster care earlier that year. But even more amazing, we learned that this English speaking person's sister actually lived in our town! She was even married to the pastor of the church that my husband and I got married in 10 years earlier! For two months I had been worrying that with each passing day our little girl's heart condition might be making her sicker and sicker. For two months I had been wondering whether or not I would get any more pictures or updates on our daughter before we travel. For two months I had been praying that somehow, someway, in a manner that only God could ordain, that this precious little one's heart and mind would be prepared so that when she met us she would know that we were safe, and that we would love her forever. Well God showed up big - I got many, many pictures and updates on our daugher, she was receiving great medical care, and she was being prepared to meet us. Right then I felt like He whispered in my ear, "See my daughter...I have been with you both all along."
We do not know why our daughter's paperwork did not mention that she had been sent from her original orphanage to True Children's Home. But we definitly know that it taught us to trust Him even more. Our Faith was increased during those two months as each time the worries and doubts crept in we had to turn it all over to our Heavenly Father and He simply said...trust me.
Our trip of a lifetime took place at the beginning of January 2009 as we travelled to China to meet our precious "YouYou". She is just perfect for our family and we enjoyed getting to know her better every day.
We arrived home on January 22nd to begin our life at home as a family of five! On February 6th we had our first appointment with a pediatric cardiologist and we were able to learn a lot more about YouYou's heart condition. She has several problems with her heart, but the two most threatening issues are a moderate to large VSD and Ventricular Inverson (also called Congenitally Corrected Transposition of the Great Arteries, or L-type Transposition). We are scheduled for a heart cath on Wednesday February 25th so that the Dr.'s can determine whether or not she is a candidate for heart surgery to close the VSD. They are hopeful that the pressures in her lungs are not too high so they have already gotten her on the schedule for Open Heart Surgery the following week (Wednesday, March 4th). The VSD surgery will greatly improve YouYou's health but it will not fix the problem with her ventricles being reversed. We are praying that technology will improve before she needs to have this corrected because the only surgery to fix this right now is highly controversial and risky. But we know the Great Physician personally so we put our trust in Him!
We plan on updating this blog with all of YouYou's medical information, especially during her heart cath and surgery. Thank you for standing in prayer alongside us. May God receive all Glory and Honor...
Subscribe to:
Posts (Atom)