Wednesday, July 31, 2013
Wednesday, July 17, 2013
Isaiah's Catheterization and Next Steps for His Heart
Last Thursday June 11th, we left our house before the sun was up and drove the 90 minutes to our Children's Hospital. It was Jay, Eliza, Ellie, Isaiah and me. We took two cars knowing that Isaiah would likely stay the night (which he did).
After we checked in with insurance and wrist bands, we went upstairs and nobody was at the desk for the Heart Center. We were told to go to the intercom to ask for entrance into the pre-op room. Uh...where was that? Thankfully, after walking around a few minutes we found someone else going in there and we walked in and said "not sure if we are in the right place?"...they already knew who we were, didn't even ask our name and just took us to his room.
I had written up a Care Plan for doctors and nurses to read and follow for Isaiah, knowing that medical anything was traumatic to him and attempting to be his "voice". The nurse right off the get go said she had read it and would give him as much space as needed. I think she did pretty well, until following the cath when he was waking up and I had explicitly said that I was to only feed him..she gave him a bottle.. but I politely took it out of her hand and that didn't happen again.
All the doctors and nurses came into to examine him, which I think was the worst part. It is a training hospital so it was at least 5 people who did this, which I feel was not necessary and may push for that not to happen next time. By the 4th person he was in tears. I don't think the Fellow AND Nurse Practitioner need to listen to his heart, when the Anesthesiologist, Nurse and Cardiologist all MUST.
They took him back to the cath lab, Jay got to carry him until he was asleep. They were very good at updating us every hour, very promptly too. The first hour we were told took all that time just to get the IV in and into the arteries. They said his veins were very "spidery" and that is normal with heart kids. Poor guy had 9 attempts on the left side.
The 3rd hour we were told they were ballooning the left pulmonary artery, not once but twice to see what they could do. Then just 30 minutes later they said they finished up. I had a gut feeling that they weren't able to complete the procedure since it ended so quickly, but hoped I was wrong. The doctor soon came out with many pictures and explanations. He explained each photo step by step and answered our questions as we went along.
The first major issue we saw was the size of his right chamber. It is approximately 4 times larger than it should be, which seems to be a secondary issue due to 2 other major problems...the pulmonary valve leakage (from his original birth defect of Tetraology of Fallot) and a very narrow left pulmonary artery. It was less than 1 mm wide when it's counter part is 8 mm wide, to give you an idea of what it should be.
Back to the hypertension on the right chamber: It is so large that the "pump" is not pumping well at all. The doctor called it stiff and sloshy. They put die into the heart with the procedure and you can see on the photo that it just pooled into the bottom, as the heart could barely pump it out.
The valve that takes the blood out of the right chamber has already been "repaired" in China. I say this as it really can't be repaired, it needs to be replaced. But the doctors have figured out a way to make the heart work, it seems, without replacing it, until the child is much older, finished growing and can have a valve replacement. This is what we originally thought his condition would be like. All of that should be successful in Tetralogy children, but only when the other aspects of the heart are doing well. Isaiah has a very narrow pulmonary artery going to the left lung. Like I said before, it was less than 1 mm when it needed to be close to 8. So they ballooned it up to 4 mm and had originally planned to put a stent into that artery to get the blood flowing to both lungs and take some pressure off that right chamber. Upon going in there and seeing how sick his little heart was and just not functioning properly at all, they realized it was not just an easy fix. In fact, the doctor said it was heart failure. Huh...Did I just hear that? Yep, "heart Failure!".. What that means is that simply his heart is not pumping like it should and it is in a dangerous situation. So there was no stent put in, there was a small biggering of the artery..it was up to 2 mm after the procedure.
So now I know why my instinct kept telling me, even from our first nights with him when he was breathing heavily, coughing, whining and restless, that it really was due to his heart. I didn't listen at first, just "thinking" it was adjustment, grieving, fears etc. But as time went on, I did start to ask the doctors about it. I was told by our pediatrician and cardiologist that it was not because of his heart. I trust our doctors and have a wonderful relationship with our ped. But they were both wrong. I have a good friend who let us borrow her son's pulseox for a couple of days. That is when I monitored his sleep, because of a very minor cold was putting him into screaming a lot through out the night and he just hadn't done that before. I really felt the nudging that it was more serious than just fears or grief. His O2 levels dipped down into the 70s and mostly hung out at low 80 and 81. So now, the doctors agreed he needs to be on O2 at night and as tolerated during the day.
So as far as we know now we have two options:
They can go back in through the cath and do what they originally planned, putting in a stent. Or they go straight to open heart surgery and replace the pulmonary valve so it works properly, not leaking, which in theory should make the blood flow more easily out of the chamber and into both arteries, even forcing the small one to open up more and in the end taking the stress off the heart and not causing hyper tension on that right chamber. There are risks with both, probably the valve being the most risky. If his heart wasn't so large with little proper function on that right side, it would be an easier surgery. But that raises the risks greatly. Once he has the new valve, it will need to be replaced as he grows. For that we are not sure how often either. But from what I understood, if they choose to do the balloon and stent, it very well might close off, stunting the growth of the artery altogether or it might not take the pressure off the right chamber and he will end up with surgery replacing the valve anyway.
We needs lots of wisdom as to what God wants us to do. We might seek a second opinion. We are "supposed" to hear something next week. The cardiologist has been great about answering my emails. He just said this week he was talking to several people about what is best for Isaiah. But it sounded as if he was thinking the replacing of the valve needed to be soon and was our only option.
Last week I had some mother fears. I am processing them with the Lord's help and prayers of others. I don't want our little, precious boy to go through this anymore!! I know God has called us to this and called us to walk alongside him as he faces this challenge. Many times as a parent we forget it is our children who are the ones who are really brave and have the courage. They are the ones walking through their tragedy. This little boy, abandoned at 6 months of age, has been through so much in his short life already. I don't want to figure out God's reasoning, I just know I trust His sovereignty. Who am I to complain in my heart at all that I am walking this path?. No, I am thankful today for each breath he has and heart beat his heart makes. I am realizing more today that life is a gift and we should treasure it all the more. If the Lord allows us the privilege of walking along this journey with our new son, into the world of multiple open heart surgeries, daily oxygen, etc..so be it. I am so ever thankful that I get to be mother holding his hand, wiping his tears and teaching him to seek the Lord through it all.
Pre-cath...just waiting and getting examined...again and again and again...
Not the greatest picture quality, but here is my corny husband all geared up to take Isaiah back to the cath lab. Isaiah was given Versed at this time to help him relax. And he was laughing at his Daddy quite a bit.
Ellie being treated like Royalty and practicing her little wave from the wagon rides with Daddy, while we waited the 3 1/2 hours for Isaiah to be done.
Isaiah upon waking up for the cath..He had to lay flat for 4 hours.. he drank 2 bottles of water and one bottle of apple juice. Poor guy was so thirsty, but we were being careful for him not to throw it up.
Sweet Isaiah today, with smiles even wearing his O2. He knows it makes him feel better.
After we checked in with insurance and wrist bands, we went upstairs and nobody was at the desk for the Heart Center. We were told to go to the intercom to ask for entrance into the pre-op room. Uh...where was that? Thankfully, after walking around a few minutes we found someone else going in there and we walked in and said "not sure if we are in the right place?"...they already knew who we were, didn't even ask our name and just took us to his room.
I had written up a Care Plan for doctors and nurses to read and follow for Isaiah, knowing that medical anything was traumatic to him and attempting to be his "voice". The nurse right off the get go said she had read it and would give him as much space as needed. I think she did pretty well, until following the cath when he was waking up and I had explicitly said that I was to only feed him..she gave him a bottle.. but I politely took it out of her hand and that didn't happen again.
All the doctors and nurses came into to examine him, which I think was the worst part. It is a training hospital so it was at least 5 people who did this, which I feel was not necessary and may push for that not to happen next time. By the 4th person he was in tears. I don't think the Fellow AND Nurse Practitioner need to listen to his heart, when the Anesthesiologist, Nurse and Cardiologist all MUST.
They took him back to the cath lab, Jay got to carry him until he was asleep. They were very good at updating us every hour, very promptly too. The first hour we were told took all that time just to get the IV in and into the arteries. They said his veins were very "spidery" and that is normal with heart kids. Poor guy had 9 attempts on the left side.
The 3rd hour we were told they were ballooning the left pulmonary artery, not once but twice to see what they could do. Then just 30 minutes later they said they finished up. I had a gut feeling that they weren't able to complete the procedure since it ended so quickly, but hoped I was wrong. The doctor soon came out with many pictures and explanations. He explained each photo step by step and answered our questions as we went along.
The first major issue we saw was the size of his right chamber. It is approximately 4 times larger than it should be, which seems to be a secondary issue due to 2 other major problems...the pulmonary valve leakage (from his original birth defect of Tetraology of Fallot) and a very narrow left pulmonary artery. It was less than 1 mm wide when it's counter part is 8 mm wide, to give you an idea of what it should be.
Back to the hypertension on the right chamber: It is so large that the "pump" is not pumping well at all. The doctor called it stiff and sloshy. They put die into the heart with the procedure and you can see on the photo that it just pooled into the bottom, as the heart could barely pump it out.
The valve that takes the blood out of the right chamber has already been "repaired" in China. I say this as it really can't be repaired, it needs to be replaced. But the doctors have figured out a way to make the heart work, it seems, without replacing it, until the child is much older, finished growing and can have a valve replacement. This is what we originally thought his condition would be like. All of that should be successful in Tetralogy children, but only when the other aspects of the heart are doing well. Isaiah has a very narrow pulmonary artery going to the left lung. Like I said before, it was less than 1 mm when it needed to be close to 8. So they ballooned it up to 4 mm and had originally planned to put a stent into that artery to get the blood flowing to both lungs and take some pressure off that right chamber. Upon going in there and seeing how sick his little heart was and just not functioning properly at all, they realized it was not just an easy fix. In fact, the doctor said it was heart failure. Huh...Did I just hear that? Yep, "heart Failure!".. What that means is that simply his heart is not pumping like it should and it is in a dangerous situation. So there was no stent put in, there was a small biggering of the artery..it was up to 2 mm after the procedure.
So now I know why my instinct kept telling me, even from our first nights with him when he was breathing heavily, coughing, whining and restless, that it really was due to his heart. I didn't listen at first, just "thinking" it was adjustment, grieving, fears etc. But as time went on, I did start to ask the doctors about it. I was told by our pediatrician and cardiologist that it was not because of his heart. I trust our doctors and have a wonderful relationship with our ped. But they were both wrong. I have a good friend who let us borrow her son's pulseox for a couple of days. That is when I monitored his sleep, because of a very minor cold was putting him into screaming a lot through out the night and he just hadn't done that before. I really felt the nudging that it was more serious than just fears or grief. His O2 levels dipped down into the 70s and mostly hung out at low 80 and 81. So now, the doctors agreed he needs to be on O2 at night and as tolerated during the day.
So as far as we know now we have two options:
They can go back in through the cath and do what they originally planned, putting in a stent. Or they go straight to open heart surgery and replace the pulmonary valve so it works properly, not leaking, which in theory should make the blood flow more easily out of the chamber and into both arteries, even forcing the small one to open up more and in the end taking the stress off the heart and not causing hyper tension on that right chamber. There are risks with both, probably the valve being the most risky. If his heart wasn't so large with little proper function on that right side, it would be an easier surgery. But that raises the risks greatly. Once he has the new valve, it will need to be replaced as he grows. For that we are not sure how often either. But from what I understood, if they choose to do the balloon and stent, it very well might close off, stunting the growth of the artery altogether or it might not take the pressure off the right chamber and he will end up with surgery replacing the valve anyway.
We needs lots of wisdom as to what God wants us to do. We might seek a second opinion. We are "supposed" to hear something next week. The cardiologist has been great about answering my emails. He just said this week he was talking to several people about what is best for Isaiah. But it sounded as if he was thinking the replacing of the valve needed to be soon and was our only option.
Last week I had some mother fears. I am processing them with the Lord's help and prayers of others. I don't want our little, precious boy to go through this anymore!! I know God has called us to this and called us to walk alongside him as he faces this challenge. Many times as a parent we forget it is our children who are the ones who are really brave and have the courage. They are the ones walking through their tragedy. This little boy, abandoned at 6 months of age, has been through so much in his short life already. I don't want to figure out God's reasoning, I just know I trust His sovereignty. Who am I to complain in my heart at all that I am walking this path?. No, I am thankful today for each breath he has and heart beat his heart makes. I am realizing more today that life is a gift and we should treasure it all the more. If the Lord allows us the privilege of walking along this journey with our new son, into the world of multiple open heart surgeries, daily oxygen, etc..so be it. I am so ever thankful that I get to be mother holding his hand, wiping his tears and teaching him to seek the Lord through it all.
Lenea's Life Decisions
Lenea insists (after watching a very non-graphic birth from Moody Science Video) that she does not want to get married if having a baby is like that. I must say while it was real footage, it was mild and nothing was shown at all. She asked me if having a baby hurt and I said "yes, it does hurt, but it is worth it and they do have medicines to help take away the hurt"..(sorry I don't have issues with medicines or epidurals to help mothers. I have educated myself and have had all types of births, including natural, by choice).
So this is our little recording of her saying this. However, she badly wants to be a Mommy. In fact, she just told me yesterday, "Mama, I wish, wish, wish I could be a Mommy Now!" (with much emphasis and impatience in her voice.) I told her God did not intend for 5 year olds to be Mommies to real babies, but she could practice on her dolls and by being a wonderful big sister.
So since have her own baby is out of the question in her mind, she has decided she wants to adopt from China. She wants to adopt a boy Toby's age and a baby girl. In fact, when we shop at stores she actually looks for stuff to buy them now and asks me if I can buy them today. I tell her she will be able to get many things and I will buy her many things when she does adopt her children.
She also has decided that she does not want to drive. One time I was taking a meal to a friend, whom I had never visited before. It was dark and the house was a little challenging to find. Lenea was along for the ride. I implied that we were lost a little bit and she must have gotten very scared. I was just talking out loud and didn't even realize the impact it had on her. After we left the friend's house (it just took about 2 more minutes and a turn around to get there ) Lenea asked me "What if we were to be lost and never find our way back home?" I assured it that would not happen and that I wasn't really that lost, just confused on what I wrote down for directions. She soon replied that she didn't want to drive ever because she was too afraid that she would get lost. I asked her who would drive her to get the stuff she needed for her babies? She told me "Daddy".. I said "What if Daddy is at work?" she said "Toby" (as Toby says he will always live at home in our basement.).. I said "What if Toby has to work?" she says "you will drive me".. I said "okay, I would love to"..
Sweet little five year olds.
Thursday, July 4, 2013
How We Spent Our 4th of July
It was nice to have Jay off an extra day this week. Sadly, tomorrow he and the kids have work and school. I am sure getting up early after a fun, late day will be a bit difficult. But at least it is Friday.
Here are some photos from the simple events in "traditional" 4th of July celebration in our home.
Isaiah and Elliana looking so adorable in their red, white and blue.
Two precious sisters, daughters, and friends..Mo Mo and Nay Nay
This toy, was not meant for riding on really, but it is just her size and she get herself around pretty well. She loves it.
Now the yearly water fight battle begins.. This is serious business.
I am telling you it is very, very serious.
Last year we had a firework ban so Toby, our creative son invented "Water works". Weeks prior to the 4th he saves all the empty shampoo, soap, vitamin bottles etc that I allow him to get his hands on. Then the kids created them into a water explosion of some sort. This year they even put food coloring into the water.
Ellie had fun with her little water balloon that would not pop. Which was just great fun for her. She kept throwing it and Moriah retrieved it for her each time, for about 15 minutes it kept her occupied.
Asher having fun and working hard at these bubbles.
Elliana and Eliza posing for the camera, as Eliza attempts to show her to throw down the Pop Its..one of children's highlights of the holiday.
She was so excited as she made it "pop"! Here with Makenna.
Our typical serious little boy, we got some big smiles from him when he figured out how to "pop" the Pop Its.
Lenea, Jacob and Toby gearing up to watch the Fire Works.
Nothing as fun as a little feet smooching on a baby boy.
Asher was afraid of the firework sounds so he got to wear some shooting head protection. What a sweet cheesy smile.
After this little show we had in our front yard, Jay took most of the children down the road to watch some professional Fire Works Show. I stayed back for the 3 littlest to get to bed.
Happy 4th of July!
Here are some photos from the simple events in "traditional" 4th of July celebration in our home.
Happy 4th of July!
Planting Grass
Before heading to China, Jay and the children, and the help from a friend (Thanks Ron!) worked hard at getting our yard ready to plant grass. It was "supposed" be done before heading to China. But we were in such a rush to go (only 5 days to make travel arrangements and pack, etc) and Jay ran into sprinkler issues so it was not completed.
But this last weekend we got some discounted sod and they put it in all in one day. I am so happy to have grass again. I could do a happy dance.
Before...
Just beginning....
One of the cutest helpers in the world..sweet Lenea..
And one of the other cutest helpers in the world...sweet Liza Lou.
Finished product...Now onto the big water bill for the month of July. See our two little baby tress back by the fence. We planted those last summer and the one of the right is dead. I don't have it in this photo but the next day we were able to replace it with a new from the nursery who gives you a year warranty. So we have two cute little plum trees growing there too. Next project is the fix the broken play house to the right and the swing set.
But this last weekend we got some discounted sod and they put it in all in one day. I am so happy to have grass again. I could do a happy dance.
Wednesday, July 3, 2013
Medical Update
The last few weeks have been big in adjustment, but really going well. God has been gracious, patient and merciful to me as I learn to mother 2 new, sweet, needy children. It has really been physically and emotionally exhausting some days, but I KNOW with prayers of others God has given me an extra measure of strength. I am so thankful for that, and it keeps a joy in my heart.
I knew parenting these 2 babies was going to be hard work. The first few days Jay went back to work, I thought, "I don't know if I am cut out for this task. This is hard!" However, the Lord reminded me that He called me to it and He picked me to be their mother through adoption. And my strength was renewed and I got back up to my task of just doing what I knew to do as a mother to many babies before. Yes, it was double and triple hard some days, (still is). I just can't explain the wisdom, patience and love He has given me through out most of my days, but just tell you that, "It IS from the Lord! and I CAN do all things through CHRIST, who strengthens me!"
Well, onto Isaiah and Ellie's medical stuff.
Last week we had 2 important appointments. Ellie saw the orthopedic surgeon and Isaiah saw the cardiologist. Ellie went in last Monday and then had xrays taken. We finally heard the findings last night. She has a deformed right fibula, hip dysplasia and mild scoliosis. Her right leg is significantly shorter (although I forgot to ask by how much).
We are still not sure what the future holds for all of these. For now it is "wait, watch and further investigate" strategy. Because the doctor thinks that none of these should keep her from walking and from the other issues of her delays and inability to use her body, we have an appointment scheduled at our Children's Hospital in 3 weeks in Neurology. Then we will look at the whole picture. My mother gut tells me something is not right. She is cognitively smart, but can't seem to make her body do what she wants it to, and it is not completely orphanage delay. She started physical therapy last week, will start occupational next week and will start speech in 2 more weeks as well. More therapy..therapy..therapy..We do believe God has her in His hands and we trust that He will heal her.
Isaiah saw the cardiologist last Tuesday. Poor little guy obviously traumatized from previous medical procedures in China. Who knows all that was done, but we know at least two open heart surgeries before the age of 2. We had many quiet and loud tears at that appointment, but he was a trooper and with a snack and in Daddy's arms we had him smiling at the end of the visit.
Unfortunately, his results on the echo cardiogram were not favorable. I had been concerned, as at night time he is often restless, heavy breathing, whiny and coughing. Not all night, but it is clear he is uncomfortable. His echo showed that his pulmonary valve, which was repaired because of his Tetrology of Fallot birth defect, is still not functioning properly. There is some back flow of blood. Then the exiting blood to the lungs is also not going through the proper pathway, the pulmonary artery of one of the sides. In fact, the doctor couldn't even see it on the echo. He suspects it is too small or blocked. It is my minimal understanding that the body will still make pathways to get blood to the lungs and that is why he is still alive and breathing. All of this is causing hypertension on the right side of his heart, which is supposed to be 1/5 of the blood pressure compared to when we take it on an arm or leg. His about equal right now which is obviously too high. His Saturation % during the day at both doctor visits he had was still in low 90s. So the cardiologist advised us to have him go through a heart catheterization before a month's time.
The day after we left Isaiah came down with a minor cold. No fever, just a little mucus drainage and small cough. That immediately increased his restlessness and coughing at night. We had been told by the nannies that since his 2nd surgery he was doing well, "except when he gets sick, it was harder for him to get over it". So I had mildly been prepared for this. But I was suspecting asthma.
However, a thought had come to me to check his O2 levels more regularly and just see what is going on. By the 4th day of this minor cold (which was still minor) he was just not very happy and extra tired. He even took a morning nap with Ellie which he had never done before. A friend of mine has a son with a heart condition that requires lots of monitoring and I thought she might be able to help. She has a Pulse/Ox monitor that she graciously loaned to us for a couple of days. I used it when they brought it over and his O2 was at 89. I put him down for nap, just a couple hours later and in about 10 minutes into sleep it had dropped to 83. I knew I needed to monitor him at night. I put it on his foot that night and watched as best I could while sleeping myself. What I saw was a dramatic decrease in O2. It begins somewhat okay (88-90 when first laying down awake) but then it dropped as low as 75 that I witnessed while sleeping. The average number was 80-82 through out the night. When he woke up it quickly went up to 90. The doctor wants him to be over 88. So this definitely explains why he is having trouble when sleeping. I emailed the doctor who said they want him in next week and not to wait for his cath longer that that. I was so not ready for this and I know Isaiah isn't either. I trust that the Lord knows as He knew this was coming so I am resting in that.
So please pray for next Thursday at 8 AM Mountain Standard Time when Isaiah has his procedure. Jay, Ellie, Eliza and I will all go down with him for the day and I "think" the plan is for Jay to bring Ellie and Eliza home and I will stay with him if they keep him overnight. It was a hard decision as I really wanted to be with him. He is really beginning to bond with me but it is obvious he doesn't trust easily. I also don't know want to leave Elliana. Jay and her are attaching well, but she is slightly more a Mama's girl which is good and I don't want to lose that. It is important that these babies attach with Mama just a bit more, like a newborn would. They didn't get 9 months in the womb with me, and 12 months nursing. So I have to work for it, for the trust, for their love. Jay does too, but research shows if they have a strong attachment with Mama the other relationships will be healthy and secure too. Again, I cried out to the Lord today, surrendering that to Him alone. He knows what it takes to heal my babies and to make a strong attachment with their Mama and Daddy. He will do it in His way, not mine and I give Him that too!
So all your prayers are appreciated about all of the above. Truly it has been those prayers that are evident through this entire adoption journey with Elliana and Isaiah. Thank you!!
I knew parenting these 2 babies was going to be hard work. The first few days Jay went back to work, I thought, "I don't know if I am cut out for this task. This is hard!" However, the Lord reminded me that He called me to it and He picked me to be their mother through adoption. And my strength was renewed and I got back up to my task of just doing what I knew to do as a mother to many babies before. Yes, it was double and triple hard some days, (still is). I just can't explain the wisdom, patience and love He has given me through out most of my days, but just tell you that, "It IS from the Lord! and I CAN do all things through CHRIST, who strengthens me!"
Well, onto Isaiah and Ellie's medical stuff.
Last week we had 2 important appointments. Ellie saw the orthopedic surgeon and Isaiah saw the cardiologist. Ellie went in last Monday and then had xrays taken. We finally heard the findings last night. She has a deformed right fibula, hip dysplasia and mild scoliosis. Her right leg is significantly shorter (although I forgot to ask by how much).
We are still not sure what the future holds for all of these. For now it is "wait, watch and further investigate" strategy. Because the doctor thinks that none of these should keep her from walking and from the other issues of her delays and inability to use her body, we have an appointment scheduled at our Children's Hospital in 3 weeks in Neurology. Then we will look at the whole picture. My mother gut tells me something is not right. She is cognitively smart, but can't seem to make her body do what she wants it to, and it is not completely orphanage delay. She started physical therapy last week, will start occupational next week and will start speech in 2 more weeks as well. More therapy..therapy..therapy..We do believe God has her in His hands and we trust that He will heal her.
Isaiah saw the cardiologist last Tuesday. Poor little guy obviously traumatized from previous medical procedures in China. Who knows all that was done, but we know at least two open heart surgeries before the age of 2. We had many quiet and loud tears at that appointment, but he was a trooper and with a snack and in Daddy's arms we had him smiling at the end of the visit.
Unfortunately, his results on the echo cardiogram were not favorable. I had been concerned, as at night time he is often restless, heavy breathing, whiny and coughing. Not all night, but it is clear he is uncomfortable. His echo showed that his pulmonary valve, which was repaired because of his Tetrology of Fallot birth defect, is still not functioning properly. There is some back flow of blood. Then the exiting blood to the lungs is also not going through the proper pathway, the pulmonary artery of one of the sides. In fact, the doctor couldn't even see it on the echo. He suspects it is too small or blocked. It is my minimal understanding that the body will still make pathways to get blood to the lungs and that is why he is still alive and breathing. All of this is causing hypertension on the right side of his heart, which is supposed to be 1/5 of the blood pressure compared to when we take it on an arm or leg. His about equal right now which is obviously too high. His Saturation % during the day at both doctor visits he had was still in low 90s. So the cardiologist advised us to have him go through a heart catheterization before a month's time.
The day after we left Isaiah came down with a minor cold. No fever, just a little mucus drainage and small cough. That immediately increased his restlessness and coughing at night. We had been told by the nannies that since his 2nd surgery he was doing well, "except when he gets sick, it was harder for him to get over it". So I had mildly been prepared for this. But I was suspecting asthma.
However, a thought had come to me to check his O2 levels more regularly and just see what is going on. By the 4th day of this minor cold (which was still minor) he was just not very happy and extra tired. He even took a morning nap with Ellie which he had never done before. A friend of mine has a son with a heart condition that requires lots of monitoring and I thought she might be able to help. She has a Pulse/Ox monitor that she graciously loaned to us for a couple of days. I used it when they brought it over and his O2 was at 89. I put him down for nap, just a couple hours later and in about 10 minutes into sleep it had dropped to 83. I knew I needed to monitor him at night. I put it on his foot that night and watched as best I could while sleeping myself. What I saw was a dramatic decrease in O2. It begins somewhat okay (88-90 when first laying down awake) but then it dropped as low as 75 that I witnessed while sleeping. The average number was 80-82 through out the night. When he woke up it quickly went up to 90. The doctor wants him to be over 88. So this definitely explains why he is having trouble when sleeping. I emailed the doctor who said they want him in next week and not to wait for his cath longer that that. I was so not ready for this and I know Isaiah isn't either. I trust that the Lord knows as He knew this was coming so I am resting in that.
So please pray for next Thursday at 8 AM Mountain Standard Time when Isaiah has his procedure. Jay, Ellie, Eliza and I will all go down with him for the day and I "think" the plan is for Jay to bring Ellie and Eliza home and I will stay with him if they keep him overnight. It was a hard decision as I really wanted to be with him. He is really beginning to bond with me but it is obvious he doesn't trust easily. I also don't know want to leave Elliana. Jay and her are attaching well, but she is slightly more a Mama's girl which is good and I don't want to lose that. It is important that these babies attach with Mama just a bit more, like a newborn would. They didn't get 9 months in the womb with me, and 12 months nursing. So I have to work for it, for the trust, for their love. Jay does too, but research shows if they have a strong attachment with Mama the other relationships will be healthy and secure too. Again, I cried out to the Lord today, surrendering that to Him alone. He knows what it takes to heal my babies and to make a strong attachment with their Mama and Daddy. He will do it in His way, not mine and I give Him that too!
So all your prayers are appreciated about all of the above. Truly it has been those prayers that are evident through this entire adoption journey with Elliana and Isaiah. Thank you!!
Wednesday, June 19, 2013
Catch Up Post: Adoption, China, Adjustment, Life
Our VPN wasn't working most of the time in China, therefore it was impossible to blog while there. AND I was so busy with little people it probably wouldn't have been much anyway.
We came home on June 8th, after 30 hours of travel time. Can I just say I really, really dislike that long airplane ride? The babies hated it and we held them while they fussed, cried, tossed in their 30 minute catnaps and Isaiah even got air sick the last hour for the long flight. We went to 4 airports, 3 flights.
I will post a bunch of photos and write captions to give a glimpse of our 18 days traveling to China and home. It really was a wonderful adoption trip. We had a tiny spout of stomach sickness with my teens and Jay, which lasted about 24 hours. I had sinus issues I think from the pollution, since it has mostly cleared the last 48 hours. I had a very bad stomach ache the night before we left and I was worried to get on the plane. After praying a lot through the night it cleared up. The babies were not sick at all, slept great. Ellie is quite attached to Mama and Isaiah to Daddy. They both are accepting of the other parent more and more each day.
Ellie's personality is a go-getter, strong, determined, feisty and sweet all in one very tiny package. She weighed a little under 19 lbs at Gotcha Day and today at the doctor was 20 lbs exactly. she fits pretty well into size 12 months except for her waist needs more like a 6 month. She LOVES food and loves to move. She loves clothes and odd things to look and play with. She is all baby. She doesn't talk at all, sometimes baby babble. She grunts a lot, cries loudly, and is learning to sign. She can not walk on her own, but loves to be walked around holding tight onto your hands. She "crawls" with a bent leg in criss-cross position and pulls herself forward. She is very delayed, but very smart. We suspect intestinal parasites which she is getting tested for right now. She loves to snuggle in the Ergo and be walked around. She smiles all the time and can get a sweet little giggle when being tossed into the air. We are suspecting her delays are more than just institutional, maybe Cerebral Palsy. We are not concerned though and the doctor wants to get her into PT, OT and ST as soon as we can before we go the neurological route and see how she improves. He said treatment is the same either way. She is teething molars and I think it has been making it a little crabby the last few days. She loves to investigate her new home. In spite of the fact that she has not the full capability to control her hands and arms, she can give a good right hook when she is mad. She has been sleeping better the last few nights. The first 3 nights we were home she screamed half the the night. We have put back in her little crib with a weighted blanket and added some essential oils to see if that helps, along with Ibuprofen for teething. All of the above seem to help her sleep "most" of the night. She has been waking lately for a midnight bottle, which I am gladly giving her. She is always wanting to eat, I am just thinking for 3 years she was hungry and she has a lot of catching up to do. I think she is going to have no problems gaining weight. What a sweet blessing she is.
Isaiah's personality is a lot different than hers. He is quiet, whiny, withdrawn and serious, with a bit of silly grin he is hiding under it all. He will not speak to us or sign very much at all. We have made small steps in getting him to sign "more" or "please" when he wants something. And I have heard him say "Dadda" and "Mama" on occasion. He only weights 22 lbs, is long and very lean. He doesn't smile often, but when he does his whole face lights up. He loves his belly kissed and we can get a huge belly laugh from that experience. He barely eats at all, but will take about 4oz of milk from a bottle several times a day and he likes to drink water from a Camelbak. He loves Daddy, since Jay had him from Gotcha day and 5 days without me. He wanted nothing to do with me the first couple days I was with him. Our first step in getting him to let me feed him was Jay holding him while I held the bottle. It was a step and just a day or so later he let me hold him with the bottle alone. He barely walks and when he does it was with straight legs. We "think" he was held a lot in his orphanage and in the crib. His nannies all loved him. When Jay took him for an orphanage visit one nanny said a blessing over him. Isaiah cried with delight to see his best friend in her crib (very bad hydrocephalus) and then he cried tears of anguish to leave her. Jay said it was heart wrenching to make them part. Isaiah seems to be deeply grieving. But he is slowly, being healed and opening up his heart to us. He has a very large pigeon chest from his last heart surgery, which we weren't aware of. He seems to not be bothered by it, but he doesn't lie on it very heavily. It will be interesting to hear what the heart surgeon thinks of it and if they will do anything to repair it. I think they have to rebreak the sternum to fix it. He is a champion sleeper which has saved me with Ellie not sleeping so good, always. He does fuss in his sleep quite a bit, snore and seem short of a breath with some coughing while he sleeps. The doctor does not believe is due to his heart, maybe asthma, reflux or a residual from recent illness he might have had. We will see the heart surgeon in 10 days. When he needs me by fussing at night (his crib is next to our bed) I just hold his hand and he likes that.
So life at home is going well. Amazingly, laundry and cleaning are pretty great, due to my awesome older and younger helpers. We won't look in my bedroom though okay? Jay went back to work one day last week. I did not feel overwhelmed, but I was tired. I sat on the ground with the littles a lot. I am going to need to get more adventurous with them sooner or later. But for the first few weeks we are just getting to know each other and let them experience their siblings and new home. It has been a huge blessing to have a few meals come for the first few weeks. I know prayers are being said daily for us, I feel them. The older children love their new siblings. I am finding a bit hard to find the balance between working on bonding with new kiddos and keeping relationships with other children. I so appreciate all the grace, mercy and understanding my other children have given me through this transition. I think the fog has lifted from jet-lag, but my emotions feel a bit all over the place sometimes. Not quite as bad as post-partum hormones but maybe about 25 percent of that.
Here are the photos:
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May 27, 2013 Elliana Kate Jun "Gotcha Day" Her Nanny (not this lady in the photo) gave her to me and from the get go Ellie was screaming and scared. She cried the entire 90 minutes we spent waiting for paperwork to be finalized for all the families in this room. Once we left the building and went to Walmart and she willingly took food from me she calmed down. We had a hard, whiny and crying day with her. By the following day she was better and each day after became more and more attached to me.
May 27, 2013 Isaiah Calvert Tao (Tao Tao) Gotcha Day. He was whimpering and scared. But quickly warmed up to Daddy.
May 28, 2013 Isaiah is officially our son."Adoption Day"!
May 28, 2013 Ellie is officially our daughter "Adoption Day" for her as well. She is starting to really love the Ergo as well.
Sweet, serious and somber little Isaiah. But in the photo by the baby (that is his friend) he was very gentle and loving toward her. We can see beautiful glimpses of a little lover child. These photos were his visit to the orphanage.
Just a little comparison of Ellie from the first week to the second week we had her. The first photo we had her for just one day. She was curious but not wanting to smile much. The photos in the stroller were the second week. You can see a little brighter bounce in her eyes and of the course her smile is precious.
Our first day back together, after a short night's sleep. This was us waiting at the Medical Check up for the littles. So happy to be reunited.
These photos were at the Chen Ancestral Hall in Guangzhou (including the one of Jacob posing with the statues) and the Pearl Market. I bought some pearls for Ellie, Isaiah's future wife and Makenna for a graduation gift and some earings for myself and Eliza. They had bags and bags of colored pearls. You pick what strand you want and they make it into a necklace for you. This is where they tie each pearl individually. I think it took them about 5 minutes for each necklace. They were fast. I paid 60 American dollars for each necklace. They are simple and elegant.
A man, painting the names of the children inside a pretty handpainted blown glass jar I picked out for them. I think shopping was one of the highlights of the trip for me. I brought home many gifts for the children to give them on birthdays for the coming 2 decades I think.
Shopping on Shaiman Island.
Asher posing with a statue on Shaiman Island. Cute boy!
Lunch at Lucy's on Shaiman Island. I had just walked through a huge thunder storm to meet them for lunch after shopping at an amazing store owned by the agency that helps kids needing adoption. A Gift of Love is the name of the store.
(not the greatest photo of us) but I wanted you to see our first attempts at having Isaiah let me feed him. This was our 3 day together and he still would not snuggle me or take a bottle or food from me. So Daddy held him, while I held the bottle and it worked. Accept that Ellie was jealous and Asher wanted to be a part of the action too. Oh well..progress was made.
More times with me feeding my two "little birdies" noodles. They kids love noodles and they sat on each side of me and opened mouths wide while I put them in. They were very excited and happy with this game. And the bonding was moving along...
One of the daily highlights for Asher was the Koi Fish pond at our hotel by the breakfast room. He took bread every day and fed the fish. Isaiah liked it too.
One of the fun things we got to do with the other families from our agency was the Pearl River Dinner Cruise. These photos were from that evening. The one building that I got a good picture of was my favorite. It changed colors that spiraled up to the top of the building, including "rainbow".
June 5, 2013 our Ellie turned 3. We shared that evening with another family I will post next and their Reece who turned 3 as well that day and was from Ellie's province. She LOVED the cheesecake.
Wes, Heather and Reece from Alabama.
Adam, Jessica and Samuel. This little boy is the one we prayed about at the same time whether to adopt as we looked at Isaiah's file. We obviously God led us to choose Isaiah, but this little guy was precious too and we were double blessed to be there the same time he was getting adopted and meet his sweet family.
Robin, Andrew and Levi. Levi was a precious boy which Asher became fast friends with.
We are so glad we brought Jacob and Eliza, they were instrumental and we couldn't have managed without them. I think they had a lot of fun too.
New parents....we are so blessed...
We came home on June 8th, after 30 hours of travel time. Can I just say I really, really dislike that long airplane ride? The babies hated it and we held them while they fussed, cried, tossed in their 30 minute catnaps and Isaiah even got air sick the last hour for the long flight. We went to 4 airports, 3 flights.
I will post a bunch of photos and write captions to give a glimpse of our 18 days traveling to China and home. It really was a wonderful adoption trip. We had a tiny spout of stomach sickness with my teens and Jay, which lasted about 24 hours. I had sinus issues I think from the pollution, since it has mostly cleared the last 48 hours. I had a very bad stomach ache the night before we left and I was worried to get on the plane. After praying a lot through the night it cleared up. The babies were not sick at all, slept great. Ellie is quite attached to Mama and Isaiah to Daddy. They both are accepting of the other parent more and more each day.
Ellie's personality is a go-getter, strong, determined, feisty and sweet all in one very tiny package. She weighed a little under 19 lbs at Gotcha Day and today at the doctor was 20 lbs exactly. she fits pretty well into size 12 months except for her waist needs more like a 6 month. She LOVES food and loves to move. She loves clothes and odd things to look and play with. She is all baby. She doesn't talk at all, sometimes baby babble. She grunts a lot, cries loudly, and is learning to sign. She can not walk on her own, but loves to be walked around holding tight onto your hands. She "crawls" with a bent leg in criss-cross position and pulls herself forward. She is very delayed, but very smart. We suspect intestinal parasites which she is getting tested for right now. She loves to snuggle in the Ergo and be walked around. She smiles all the time and can get a sweet little giggle when being tossed into the air. We are suspecting her delays are more than just institutional, maybe Cerebral Palsy. We are not concerned though and the doctor wants to get her into PT, OT and ST as soon as we can before we go the neurological route and see how she improves. He said treatment is the same either way. She is teething molars and I think it has been making it a little crabby the last few days. She loves to investigate her new home. In spite of the fact that she has not the full capability to control her hands and arms, she can give a good right hook when she is mad. She has been sleeping better the last few nights. The first 3 nights we were home she screamed half the the night. We have put back in her little crib with a weighted blanket and added some essential oils to see if that helps, along with Ibuprofen for teething. All of the above seem to help her sleep "most" of the night. She has been waking lately for a midnight bottle, which I am gladly giving her. She is always wanting to eat, I am just thinking for 3 years she was hungry and she has a lot of catching up to do. I think she is going to have no problems gaining weight. What a sweet blessing she is.
Isaiah's personality is a lot different than hers. He is quiet, whiny, withdrawn and serious, with a bit of silly grin he is hiding under it all. He will not speak to us or sign very much at all. We have made small steps in getting him to sign "more" or "please" when he wants something. And I have heard him say "Dadda" and "Mama" on occasion. He only weights 22 lbs, is long and very lean. He doesn't smile often, but when he does his whole face lights up. He loves his belly kissed and we can get a huge belly laugh from that experience. He barely eats at all, but will take about 4oz of milk from a bottle several times a day and he likes to drink water from a Camelbak. He loves Daddy, since Jay had him from Gotcha day and 5 days without me. He wanted nothing to do with me the first couple days I was with him. Our first step in getting him to let me feed him was Jay holding him while I held the bottle. It was a step and just a day or so later he let me hold him with the bottle alone. He barely walks and when he does it was with straight legs. We "think" he was held a lot in his orphanage and in the crib. His nannies all loved him. When Jay took him for an orphanage visit one nanny said a blessing over him. Isaiah cried with delight to see his best friend in her crib (very bad hydrocephalus) and then he cried tears of anguish to leave her. Jay said it was heart wrenching to make them part. Isaiah seems to be deeply grieving. But he is slowly, being healed and opening up his heart to us. He has a very large pigeon chest from his last heart surgery, which we weren't aware of. He seems to not be bothered by it, but he doesn't lie on it very heavily. It will be interesting to hear what the heart surgeon thinks of it and if they will do anything to repair it. I think they have to rebreak the sternum to fix it. He is a champion sleeper which has saved me with Ellie not sleeping so good, always. He does fuss in his sleep quite a bit, snore and seem short of a breath with some coughing while he sleeps. The doctor does not believe is due to his heart, maybe asthma, reflux or a residual from recent illness he might have had. We will see the heart surgeon in 10 days. When he needs me by fussing at night (his crib is next to our bed) I just hold his hand and he likes that.
So life at home is going well. Amazingly, laundry and cleaning are pretty great, due to my awesome older and younger helpers. We won't look in my bedroom though okay? Jay went back to work one day last week. I did not feel overwhelmed, but I was tired. I sat on the ground with the littles a lot. I am going to need to get more adventurous with them sooner or later. But for the first few weeks we are just getting to know each other and let them experience their siblings and new home. It has been a huge blessing to have a few meals come for the first few weeks. I know prayers are being said daily for us, I feel them. The older children love their new siblings. I am finding a bit hard to find the balance between working on bonding with new kiddos and keeping relationships with other children. I so appreciate all the grace, mercy and understanding my other children have given me through this transition. I think the fog has lifted from jet-lag, but my emotions feel a bit all over the place sometimes. Not quite as bad as post-partum hormones but maybe about 25 percent of that.
Here are the photos:
.jpg)
May 27, 2013 Elliana Kate Jun "Gotcha Day" Her Nanny (not this lady in the photo) gave her to me and from the get go Ellie was screaming and scared. She cried the entire 90 minutes we spent waiting for paperwork to be finalized for all the families in this room. Once we left the building and went to Walmart and she willingly took food from me she calmed down. We had a hard, whiny and crying day with her. By the following day she was better and each day after became more and more attached to me.
May 27, 2013 Isaiah Calvert Tao (Tao Tao) Gotcha Day. He was whimpering and scared. But quickly warmed up to Daddy.
May 28, 2013 Isaiah is officially our son."Adoption Day"!
May 28, 2013 Ellie is officially our daughter "Adoption Day" for her as well. She is starting to really love the Ergo as well.
Sweet, serious and somber little Isaiah. But in the photo by the baby (that is his friend) he was very gentle and loving toward her. We can see beautiful glimpses of a little lover child. These photos were his visit to the orphanage.
Just a little comparison of Ellie from the first week to the second week we had her. The first photo we had her for just one day. She was curious but not wanting to smile much. The photos in the stroller were the second week. You can see a little brighter bounce in her eyes and of the course her smile is precious.
Our first day back together, after a short night's sleep. This was us waiting at the Medical Check up for the littles. So happy to be reunited.
Lunch at Lucy's on Shaiman Island. I had just walked through a huge thunder storm to meet them for lunch after shopping at an amazing store owned by the agency that helps kids needing adoption. A Gift of Love is the name of the store.
We are so glad we brought Jacob and Eliza, they were instrumental and we couldn't have managed without them. I think they had a lot of fun too.
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