Tuesday, April 30, 2013

Just For Fun

This is how all of Gideon's pants fit him. We had to put Bria's old size 2 leggings on him today in hopes they would stay up. Even then they were about an inch too big. Gideon also loves to throw things over the stair rail. If we are missing something the first place we look is in the landing.

What a precious little one. Notice the pink in his face. What a blessed site.

Gideon LOVES fries. If I had a hard time getting him to eat at the hospital all I had to do was order fries.

What do teenage boys do on a Sunday afternoon? Sleep. Even if you are visiting your brother in the hospital.
I'll give Pierce the out. He took over at home during the days while we were gone. He did a fantastic job. Today he said he made a terrible homemaker because he couldn't seem to keep the house clean. I know exactly what he meant and Gideon was not even there. I am just glad the he is doing online school this year.

Tyler and Jessica came to visit on Sunday. They had to drive more than an hour to get to the hospital. The part that surprised me the most is that Jessica's parents were in from Kentucky for Jessica and her brother and sister-in-laws college graduations and they took that time to come visit too. We love the Rhanquists  They are really great people.

Gideon's makeshift bed at home. It didn't last long. He has been up and around since we got home.
He will start to hurt and want Mom to hold him for a while but he is up and playing in no time. Before surgery  he could play for 5 minutes or so and then have to lay down. Now there are not many limitations.
We did see some blue in the lips and hands today for a while. Hopefully we won't be back for more surgery very soon.

Marshall had a present for us.

It was Bria! She is doing so well. Since coming home from China we have seen Bria reach out for love and attachment. Tonight she told Mom "I love you soooo much" more than once.

Malia was trying to make a bed for Gideon in the box.
 They then pushed Gideon around in the box for a long time.
All the children are adjusting very well. The insecurities are quickly fading away 
and the family is forming a strong unit with Gideon on a firm foundation of love and acceptance.

We made one of the best decisions of our lives bringing Gideon into this family. 

Monday, April 29, 2013

Gideon's Home!!!

Amazingly, Gideon was released from the hospital this afternoon. There was a possibility of being released Sunday but the Cardiologist on the floor wanted to get another Echo done to be sure the surgery was holding up well. While we waited for the Echo Gideon went into VTach twice. I'm not sure what it stands for but it is when the heart starts to beat very fast. This was not a good thing and worried me considerably. Another Cardiologist that specializes in the electrical system looked things over. The information that she came back with was yet, one more surprise. Gideon has two right Atria, the top of the heart. Not a right and left but two right, one on the right and one on the left. Why I didn't suspect this after finding out he has two right lungs I don't know. We also found out that Gideon's spleens, yes multiple, are working. Yeahhh! No antibiotics for life. This Heterotaxy is a very weird disorder.

As I talked with the care professionals at the hospital I realized more and more what a miracle Gideon is and how unusual his recovery is. I am in awe that we went from not being able to do anything for Gideon. To there may possibly be something that can be done. Then Gideon will most likely not survive the Heart Cath so how do you want to handle resuscitation? To surgery in the next week or two. Surgery in the morning and recovery will take 2-3 weeks. To being home 5 days later. What a miracle we have been honored to be a part of. I was reflecting on this today and wished that we could stay as close to the Lord as we have been this week but I know that is not what this life is all about. There must be opposition. It is because of the opposition we have had that we understood the great blessing we have experienced this week.

The Lord has been near and we have felt His peace that passeth all understanding.  How did we have great peace as we talked with the surgeon? Or peace and a feeling of being in a holy place calming our son as we do his first Echo. Peace and gratitude for a doctor that was excited to help at the same time as giving us news that should have been devastating. Or have peace when we decide that we would send Gideon into the Heart Cath knowing we may never see him again but with all our hearts wanted to grab him and run so we could have even a few weeks more. How did we have peace as we were in the Cardiac ICU being surrounded by children fighting for their lives and parents filled with fear and sorrow. The angels are near and the Lord loves us. He has felt all our pains and sorrows and is always there to succor us. My love and testimony of our Father in Heaven and our brother and Savior Jesus Christ have for us has been deepend greatly. Would I do this again? YES YES YES!! I love my Gideon. Through him I have learned so much and will be ever grateful for my time with him.

We don't know what the future holds. There are many unknowns with Gideon's health. We were told today that we may have 10 years with Gideon the way he is. Technology is always moving forward. We don't know what the Lord has in store but we will take all that he has to give. I have thought about the story of Jarius's daughter in the New Testament quite a bit in my life. She was to be a miracle for the Lord. I have prayed that I too could be His miracle. Whatever that miracle looks like.We are willing to put our Gideon on the alter and hope and pray that we can be strong like Abraham. When the day comes that Gideon passes from this life we want to be grateful for the blessing of Gideon and never question the ways of God. This will be a daily prayer for me for the rest of my life.

Sunday, April 28, 2013

Out of ICU

Gideon is out of ICU 48 hours after surgery.  Another amazingly quick step in his progress. The ICU nurse didn't want to let him go because she loved him so much.    

Yeah - I'd cry to if I had to just lay there with stuff all connected to me for 4 days.  He had much more of the smiles on the right than the other on the left...

Tubes and wires, but they all came out yesterday!!!

His last meal in ICU.  

Just before the final disconnections.  There was about 1 1/2 feet of that larger drain tube inside him.  That was not fun for him while it was being pulled out. 

Showing off his strength so he can get out of ICU.  This was Saturday about 11:00 AM.

Saturday, April 27, 2013

What A Great Day

Miracles happen!!

Today Gideon has made such great progress that the doctors and nurses are excited and astonished. Gideon has had many of his tubes and wires taken out today. He is now on 2 medicines, Tylenol and a narcotic for pain. That is it! He will be getting his drain tubes out in the morning as well as a couple of wires connected to his heart. These wires are connected to the heart and come out the lower chest to be connected to a portable pace maker if Gideon's heart went into arrhythmia.

By late morning Gideon was asking for water again. The doctor had said that as soon as he woke up a little he could have any amount of liquid he could tolerate. Gideon proceeded to drink over 16 ounces in an hour. He was then supposed to eat some fat to make sure his heart didn't act up afterword. We ordered up 2 orders of fries and as soon as the fries were even near Gideon he started shoving them down. He ate every fry! No one could believe it. While Gideon was eating his fries the surgeon came  to check up. He was very impressed with the progress and this is when he started ordering less medicine and IV's. Another doctor came in to check up  and he anticipates that Gideon will be out not too long after the weekend.We had been told that the average stay is 3 weeks and on the good side 2. This might be one week if all holds up.

I have been afraid this week that the bonding process would be hindered by the negatives of surgery. Gideon was mad at me at times but others so out of it that he didn't protest to the stroking and closeness. My favorite position was leaning over him with my hands on his head and heart while singing primary songs to him. He reacts so well to my singing to him. I have yet to have him so upset that he does not calm down before the first verse of "I Am A Child Of God" is over and we went through some tough moments of pain and frustration. Thought I liked this position it caused some great back and neck pain. I also found some muscles that have not been used enough lately. All of this sacrifice has been worth it. Tonight Gideon wanted me to cuddle up to him and kiss him. One time he said I love you to me. And to top all of these wonderful moments off, as I was leaving he said what I think means hug and held out his arms wide. I gave him a big hug and he was satisfied enough to wave good bye.

Needless to say, today was a fantastic day!  I didn't start too well with not much sleep and a nurse that very caustic to me. That will have to wait for another day if I choose to write it. My eyes are closing without my consent so I guess that means my body wants to go to bed and I am sleeping in. Doug gets duty for the morning and I get the afternoon and night.

Friday, April 26, 2013

Gifted Surgeon

As Deanne mentioned in the update from the waiting room, Gideon did great during surgery.  His heart was taken out, some plumbing was re-routed and it was put back in.  All in about 3 hours.  What an amazing miracle.  And to facilitate that miracle, as a partner with God, is a deeply religious, sober man who has an incredible understanding of his responsibility to save and extend life.  I want to share some thoughts about the surgeon, Dr. Kaza.  

He has a rich brown complexion giving away his ancestral connection to India.  Large, dark brown eyes that are bright with knowledge and wisdom, but seek for further enlightenment at the same time.  His physical stature is far from intimidating.  His hands are small, narrow and soft - the perfect tools for the delicate operations he performs on the smallest of God's children. 

One of the signs of one who possesses great understanding, is the ability to explain complex things in terms that the lay person can understand.  Dr. Kaza has that ability.  After 2 or 3 cardiologists explained the options and the proposed procedure to us, we understood pretty well what was going to happen.  When Dr. Kaza explained it, he added 10 times more detail, but we understood it even more clearly.  

As a devout and practicing Hindu, he is open about his belief in God. He attends and teaches Sunday school at the Hindu temple around the corner from the LDS Jordan River temple in South Jordan. (He lightheartedly expressed his disappointment that his temple is dwarfed by the "other" temple he sees as he walks out the door of his temple.) 

During his description of Gideon's condition, he included phrases that gave us great peace and illuminated his acknowledgement that God is in charge. One such phrase came when he described the Pulmonary Stenosis that Gideon was "blessed with".  This is a narrowing of the artery carrying blood from the right ventricle to the pulmonary artery and eventually the lungs. He said, "God gave him this to save his life".  Then he explained that if that artery had been perfect, the lungs would have been under more pressure during the two years of Gideon's life causing damage that would have prevented the capacity needed to bypass the heart and feed blood directly to the lungs.  The "Glenn" procedure he performed today diverted 40% of the volume flowing through Gideon's heart, eased the workload on the heart, and increased the oxygenation of the blood carried back out to his body.  The stenosis made all that possible.  Blessings can come from what we perceive to be problems.     

After learning of how many children we have, Dr. Kaza also thanked us for "doing what we are doing" and seemed to appreciate specifically the opportunity to help Gideon. He told us more than once that he would work on Gideon as if he was his own son.  This is in stark contrast with the attitude of another top cardiologist in the area who we contacted for a letter of recommendation that Gideon's adoption process be expedited.  His comment was admonishing us to "leave Gideon in China and bring another child home who can be fixed."        

Dr. Kaza also impressed us when he was interested enough in Gideon's name to have one of the nurses look up the meaning.  He was delighted to know that he was working on a "Mighty Warrior" and said that name would serve him well during this process.

I don't intend to put Dr. Kaza on a pedestal he himself would not want to be on.  He is an impressive and obviously an accomplished man, but when you put the life of one of your children in the hands of a man, it is vital to know of his core beliefs.  Wisdom, science, skill and talent are wonderful, but it gives us an added measure of peace to have a doctor who acknowledges the Creator of all life and brings Him into the experience.

A few minutes after we saw Gideon for the first time after surgery.  
We were prepared for something a lot worse than what we saw.  The surgeon, Dr. Kaza, wanted us to see what a post-op baby looked like so he had the nurse take us to see another baby yesterday.  That baby had more tubes and was pretty puffy.   Gideon looked great.  Notice the IV in the neck - ouch!

What I call "The tree of life".  
This is a rack of medicine "dispensers" pushing an array of drugs into the myriad tubes hooked up to Gideon at various locations in his body.  (I always wanted to use that word "myriad" and sound really cool.  Is it just me, or is it hard to resist putting the word "of" after it?)

Mom and nurse Nicole making sure Gideon is comfortable.  
He had some wakeful moments when he did his best to roll over, yank out tubes and remove his oxygen mask, but between mom's singing to him and more drugs he was quickly put back into submission.

Our "Mighty Warrior" with his first battle scar.  
The thing on his right arm is called a NO-NO.  At least that is what the nurses called it.  It keeps his arm straight making it awfully difficult to pull on the tubes.

Thursday, April 25, 2013

Surgery Update

We are in the surgery waiting room and just got an update.

Gideon is doing well. They are done with surgery and bypass is off!  He is still alive and will hopefully live to see many more days. :) They are in the process of sewing him up then will come and talk with us. We do know that he did not require his valve to be fixed so things were the least invasive of our options.

We are so grateful for the outcome so far. We have felt a sense of peace today and God has given us some support and distractions. Doug's sister came to see us and brought some food, music and a book. She was very inspired as to what to bring. While she was here I saw some friends come into the waiting room while waiting for their son to get hernia surgery. We were able to talk with them for a while and only a few minutes after Doug's sister left another friend sought us out to talk. This friend has also adopted many special needs kids and surprisingly he was in the Cardiac waiting room last night because his daughter was admitted for some problems. What a blessing to have all this support and the ability to keep our minds busy so we have no room for doubt.

Doug and I have both been filled with emotions of gratitude this week. There is so much to be thankful for. Even when we didn't know if Gideon would be a candidate for surgery or when we didn't know if he would live or die we can not forget the many blessing we have received and continue to receive. This has been a sacred experience that we will never forget. There is much questions still surrounding Gideon and many more difficult days but if we allow the Lord to continue with us we will be greatly blessed. We may not remember the details but we will always remember the feelings.

Surgery Tomorrow

OK, so most reading this will not see it until it is tomorrow but that title is the best I could do.

Yesterday and today have been full of ups and downs. I will cut and paste a copy of an email Doug sent out to family yesterday then go from there. I have not been able to blog everyday because Doug and I trade off who stays overnight at the hospital with Gideon and Doug doesn't think about blogging. Sorry.

"Gideon made it through the catheter procedure with a little excitement.  He didn't go into cardiac arrest, but his heart went into arrhythmia 4 times to the point they had to shock him out of it.  A normal heart can take the stimulation of a catheter just fine, but damaged hearts don't always.  The reaction he had shows how close he has been to heart failure.  They said he is quite a fighter. 

They had more details about the construction of his heart and it seems the more they find out about the defects, the more they are amazed he is as healthy as he is.

They stopped the procedure short of what they wanted.  Now they are going to keep him sedated overnight and perform a MRI tomorrow morning at 10:00 to gather the rest of the data from the upper end of the heart and arteries they need to make decisions on surgery. 

He was a little restless this afternoon so they changed the medication up a little and he has been really peaceful since they got that adjusted. 
I tried to send photos with this email, but I am at the hospital and the connection speed is awful.  I will send them a bit later after Deanne and I switch places."

Last night they also did an ultrasound to see what is going on with his organs. Everything is there but some are in the wrong place as expected but that's no big deal. Gideon has what is called Spleenia, I think that is what Doug told me. Gideon has multiple small spleens that most likely don't function well so he will be on antibiotics for life. Not a problem. 

After the MRI and a meeting with the surgeons and cardiologists a decision was made. Throughout the day we waited for solid info. One doctor told us that we would not be doing surgery until next week or later and that Gideon would need to stay in the hospital until then. I knew that was not an option. My kids are starting to come apart at the seams emotionally. One had a screaming nightmare last night that mom was gone and would not come home. Another is not himself and constantly cries for mom. And yet another punched a kid as school today. We could not stay in the hospital any longer than necessary. We tried to sway them and let us take Gideon home while we wait explaining that he has survived for 2 years like this. I think that put more fire under the doctors. About an hour later someone walked up and with great surprise said "surgery is tomorrow". I had three emotions. Excitement, scared and disappointed that I wasn't going home. I didn't know how to feel so I just cried. I have been doing a lot of that! I don't even wear makeup anymore.

What the doctors came up with is now a two part fix. Gideon will have one surgery called a "Glenn" with the possibility of fixing his one valve so it won't leak. The Glenn is a procedure that reroutes veins and arteries to bypass the heart and cause the blood to flow directly into the lungs. The blood will then go into the heart and be pumped out to the body. The next stage may take place in  a couple of years as he shows signs of needing it. The basic heart structure will stay the same without 3 valves or the separation of the chambers. After the second surgery all of the blue or non oxygenated blood will go directly to the lungs and the heart will be strictly a pump to get the blood back into the body.

Gideon has been very anxious. He is supposed to be sedated but the meds have not been working. He is now on his third medicine and he has slept well since. Last night he thrashed around most of the night and today half of the day was the same. It took two of us at times to keep him from moving around so much to pull out the oxygen tubes and IV's. Gideon is one strong little boy! I am so sore from leaning over the bed for hours at a time and holding him down will great force. All Gideon wanted was to go home and have us hold him. It was hard to see him go through this. I know we have much more to come.

I have been told that our joys will be as deep as our sorrows. Gideon has brought great joy already but the sorrow out weighs the balance for now. I am so hopeful that we will find that joy in this life with Gideon. Doug and I had a conversation as I left the hospital tonight. We both confirmed that even knowing now the pain involved we would still make the same decision to adopt Gideon. He is a great blessing in many ways. He brings light and love to those he meets. Everyone that has the opportunity to work with him at the hospital love him. They all ask to come back and serve him on the next shift. One CNA came by to visit and play even though she was assigned somewhere else. He draws people in without meaning to. Our Gideon is a light to this world and we are honored to be called his parents.

P.S. Please excuse me if I don't make much sense. If I need to clarify something just comment and I will clear it up.

Monday, April 22, 2013

Admitted To The Hospital

Today was Gideon's Echo. Just as I thought, as soon as a medical professional that could do something saw him he would be in the hospital. I was not surprised, but sadly unprepared, when the doctor said they were going to admit Gideon. We spent the day in the hospital to monitor his heart and get some other things done in possible preparation for surgery.

It all started at 6:30 am when Gideon and I had to leave for the hospital for the Echo. Doug got all the kids off to school and met us at the hospital. I think we have mentioned that Gideon hates the doctors. It was no different this morning. We got to the room and he cried hard. They were going to sedate Gideon for the Echo so they could get pictures without him crying but when they got his oxygen saturation level they quickly decided that sedation was not an option. He has been in the low 70's when healthy is in the 90's. Gideon's levels this morning were in the 50's. NOT GOOD. We got into the room for the echo and the technician and I decided I should lay down with him. He was hysterical and we needed to calm him down. I began to sing and by the time I got to the last verse of "I Am A Child Of God" he was fast asleep. It was a true blessing.

Doug got there when we were almost done. The technician had to change Gideon's position and that woke him up. She still needed to get picture of the top of his heart but he was now crying again. Doug sat in front of him and held his hands while I lay behind him and I sang again. In time Gideon calmed down and the feeling in that little room felt like a sacred spot on earth. There is no describing what we experienced. We received a great blessing that would be needed for what was to come.

We were moved to another exam room and talked with the Cardiologist and the Fellow with him. We have been fully aware of the severity of Gideon's heart. The doctors were concerned that they would have to say, congratulations and his heat is very complex. We put them at ease immediately  letting them know that this would not be a surprise. Next came the real surprise. Gideon has Heterotaxy, a very rare defect that can affect all of his organs. What this means is that it is most likely that his organs are in the wrong positions and he may be missing a spleen. They think also that he has two right lungs instead of a right and left. From what they felt his liver is on the wrong side.

Hearing the news was not bad but that moment is when reality set in. I was filled with sadness for him and had to stop the tears. This is where I needed the peace that had been enjoyed just a few minutes earlier. At this point we were told that they would admit and do more testing along with a heart cath.

After getting to the room the doctors on the floor, who call the shots once the patient is admitted, decided to postpone more tests until Gideon was put under for the heart cath. They didn't want to cause him to have what they call a spell and we have called an episode because his numbers were so low. This is the same reason that in 3 weeks this little guy has only had two baths. He hates them as much as the doctors office. After the Cathaterization they will draw blood for many tests and do an ultrasound on his abdomen to see if he has a spleen. It is likely that Gideon does not. If that is the case he will be on antibiotics the rest of his life along with all the heart meds. Wednesday morning the surgeons and cardiologists will meet to discuss the possibility of operating. When that meeting is over we will know more. They talked about possibly operating a couple of days later. I think as soon as Gideon has a bad day they will make the surgery an emergency but until then they want to make sure the surgeon's are well rested. I have to agree with them.

Now about what they said about his heart. Heart disease can be minor to the point that it heals itself to complicated like Gideon. Wow, I didn't realized my son was a way to measure how complicated a heart can get. I would love to say basically, blah, blah, blah, but there is no basically here. I followed the explanation fairly well but to repeat what we were told is too hard for this tired brain. What I can easily say is that he is missing a valve, where there should be 4 he has 2 1/2. His main arteries are backwards. The blood flowing into the heart is going into two places not just the one it's supposed to go into. There is not divider between the lower chambers and some other things. The one good thing is, his main artery looks fairly good just a little small. If that were not the case there would be no hop.

When the doctor got done explaining everything thinking we would be having a hard time with this. He then gave us a glimmer of hope. He is hopeful that they may be able to operate and do it all in one shot. There would be no way to go in and fix parts then later do more. If they do one thing they will have to do it all. Through the day I have had faith that what the Lord wants will take place and we will be prepared for it. By the time I left Doug at the hospital and was on my way home I started to wonder how we will juggle all the responsibilities of home and fill the needs of the kids that need us so badly right now. Once again my faith will be stretched and I will have to rely on our Father to care for and nurture the children while I am away most of the time.

This has gone on long enough but I need to let some people know that I have noticed them and would love to email but I just can't right now. If you contacted me in China I truly appreciate it. I planned to respond when home but jet lag, the flue and putting my home and life back together along with the normal responsibilities of life didn't permit me the time. I am so sorry.

I do want to say, Emilee, you have such a cute little girl and we are so happy for you and Shane. You are going to be fantastic parents!

This post may not have made a lot of sense. I'm sorry. So much to say and my brain is fried.

Tuesday, April 16, 2013

First Doctor Visit

We got into the doctor this morning. The doctor I went to was a referral from the cardiology group at Primary Children's Hospital. They like this  doctor because he works well with the heart doctors and knows what he is doing. I am so glad that I found him. He was knowledgeable and even in his temperament. He looked Gideon over and was happy to see how healthy he really is especially for having heart issues. Because the doctor has other heart children he didn't get overly concerned and put Gideon in the hospital but felt that Gideon needed that down time. It was a relief that Gideon has more time to adjust and get used to all the new things around him.

It is obvious that Gideon has been to doctors in the past. All we have to do is take him near a place that looks like a doctors office and he screams. He cried very hard for most of the visit but allowed us to do everything that was asked. He is tall for his age but very lean, as the doctor put it. Gideon is at the top of the growth chart for height but almost at the bottom for his weight and head size. His blood pressure is in the higher of the normal range which is very good. His oxygen level was in the mid 60's. A healthy person is in the mid 90's. Doug asked about brain damage with oxygen at such a low level. It is an issue but the doctor said that anemia causes more problems than the low oxygen. That is a relief for us but it does need to be helped as soon as we can.

We have already gotten an appointment with the cardiologist for Monday morning. We are scheduled for an Echo on Gideon's heart then we will talk to the doctor. I don't know who this doctor is but when I questioned the secretary about him she let me know that he is one of the head doctors at Primaries and very good at what he does. That made me feel better. Our Pediatrician was also going to try and get the best doctor so I don't think he would have allowed just anyone to see Gideon.

We now start the juggle of getting children where they need to be while I am at doctors appointments. The kids go off track in 3 weeks so that will help for a short time but in June the whole school will be transferred to another school facility while they undergo renovations. The temporary school is a ways away but still close enough for them to walk if we absolutely have to. It's amazing how the Lord works all things out for our good. This won't be easy but it will be doable.

Gideon is doing better today emotionally and physically. He is up and around getting into EVERYTHING. I don't think I will have a clean house for at least 2 years. Gideon is a tornado. He is very much a two year old throwing, hitting, pulling hair, stealing food out of Preston's hands and all sorts of things. I had to start sitting him next to me when he is mean then teaching him to give the person a hug that he hurt. He has done well with me today but still wants dad and his older brothers. He will allow me to take him out of the kids arms with some resistance but he isn't hitting me away.


Monday, April 15, 2013

A Very Difficult Heart Day

Last night Doug and I decided that we would wait two or three days to take Gideon to the doctor knowing that as soon as he was seen he could be admitted to the hospital. We wanted to give him a chance to rest and recover from the trip as well as adjust just a little to his new surroundings. After Gideon being asleep for 14 hours I started to get a little concerned but that was wondering if he would sleep tonight. Soon after Gideon woke up in a panic from his heart. He has never woken up with that problem since we have had him. He usually goes to sleep when his heart calms and rests it off. At about 16 hours of sleeping I decided I better try and wake him up but was still not too concerned about his heart only changing his sleeping pattern.

I took Gideon out to the family room and tried to get him to wake up without much luck. My brother and sister-in-law came over and I continued to try to get Gideon awake. I thought that the noise his cousins and brother and sister were making would do the trick. Not so. I tried changing him and that is when I noticed things weren't quite right. When I forced him to wake he turned a gray color and his hands, feet and mouth turned purple. I had not seen this coloring before. For the next couple of hours he went in and out of wakefulness without even fussing. That is not good for him.
When I put my hand on his chest and he didn't swat it away I knew things were very wrong. I was formulating how and when Doug and I would take Gideon to the Emergency Room. You need to know I don't got to the doctors easily. I only use them when it is necessary so for me to be thinking this it meant Gideon was very bad off. I planned on picking up the children from school in 45 minutes then meeting Doug on the way to the hospital. I didn't express my grave concern  as Devin, my brother, stroked Gideon's head and face. Gideon doesn't let us do this to him. After a time Devin looked up and there were tears. That started it for me, I too let the tears flow. All of us could tell there was something very wrong and Heather is a nurse. Devin asked if he could give Gideon a blessing. I was very grateful for his offer.

In our church the men are given the Priesthood. It is the power to act in God's name. A man needs to be worthy of this power by keeping himself clean morally and close to the Spirit. With the Priesthood he is given the privileged to bless others. This is what my brother did for Gideon.

During the blessing Gideon fell back to sleep and his color went back to his normal, not our normal but Gideon's. He slept for a while more then woke up doing fairly well. He wanted to eat for the first time today and drank quite a bit of water. From there he went in and out of the normal heart struggle. When Doug got home we chose to call the regular doctor in the morning to get Gideon in for a sick child visit and then get a referral for the Cardiologist. In that circumstance we can have more control over seeing a specific doctor instead of the emergency room staff. I don't just want the ER doctor or the on call Cardiologist. Heather is thinking that as soon as someone sees Gideon he will be admitted because of his coloring. People don't see children this age turning blue, purple and gray. In the states these things are taken care of at a very young age.We have no idea what to expect tomorrow. I know to a small degree what is coming but as we have learned, until you live something you just can't understand how hard it will be.

We are changing the school most of the kids are in to make things easier next year. If Gideon is in and out of the hospital then I will need the kids to walk to and from school. It's a good thing the principal changed this year because we tried the school once and pulled them out as soon as we could. We also have an in with the Superintendent. She will help us with whatever we need to have happen if it is reasonable. We haven't pulled this on the school yet but I may have to soon so all my children are on the same schedule. Emma being Downs attends a special class that is on a different yearly schedule than what we have been given for the last 5 years. We have the track system in our district so there are 5 different schedules for the schools.

It is now 11:20 PM and Gideon is wide awake. He is getting into anything he can and putting pens and pencils in the dog kennel. He just grabbed a handful of pens and turned to me and said, "See" then to Doug, "See Baba?" He is already using English.

Saturday, April 13, 2013

We're Home!

Friday was spent packing, changing money and taking care of a sick little boy. Gideon was having a lot of trouble again that day. We got very concerned about putting him on an airplane that evening to go to Beijing where we would stay overnight and catch our next plane at 8:30 am for Seattle. We prayed much and so did many of you. We thank you for that.

Miracles do happen and Gideon was a recipient of one this weekend. Not too long before our Beijing flight Gideon started doing better. From that time on he had no more problems. In the two weeks that we have had Gideon he didn't go a day without heart issues. Before we got him they were giving him oxygen every morning when he would struggle. We have seen the same pattern of heart and breathing issue every morning as well. We have now gone two days, or one very long one, with no breathing trouble. While on the plane his color looked the best it has been and not once did he get even a little blue. This is truly the work of God. Once we got home we did see  a little struggle when he would run around but still no problems after eating. His heart has done very well.

                                                               At the airport in Beijing.

We were met at the airport by all the kids and Jared, Sereen, and Preston. Hyrum started running before I even got off the escalator and cried "Mama!" I hugged Bria next and she resisted. I expected this but it was sad that she couldn't even look me in the eye. We took care of that throughout the day with lots of hugs and holding. We drove home in the bus and at that time were told that the van's transmission had gone out. Neither Doug nor I were worried for some reason, maybe it's because we have been waiting for the van to die. It happens that Sereen doesn't know the quirks of our van and when it gets low on gas it acts funny. What a blessing that all we needed was gas!

This is what we saw when we walked in the front door. Some friends of ours have decided the take care of our kids like grandparents when we were gone. They came over and helped make this sign with the kids. There were also many other small signs, so many that I didn't count.

Gideon didn't hold back much once home. He explored and was always in a crowd of kids. He did really well with all the chaos and noise of just being home.
Some friends had dropped off some large Lego type blocks. My first thought was "Oh great, one more thing to throw." A couple hours home and Gideon chucked a block at Marshall and caused a lump and a cut.  The poor kids are going to struggle some as Gideon learns.

Tyler and some friends came over to the house while we were gone to do a school project.
They had to organize games for a large group and entertain the people. They chose to use our kids for this project. They ran out of time so they left a Pinata for later. We did the Pinata today and Gideon took to it as though he had done this before.

When the candy started falling out he immediately started picking it up as fast as he could.

We also had friend leave Gideon a cake and balloons to welcome him home.

Another online friend, I have not met her in person, brought dinner over for the family tonight. With it they brought wonderful desserts and a gift for Gideon. This was his reaction when seeing it.

He loved it so much that he had to kiss it!
Thank You Wendy and family!!

On a side note. We saw quite a few Africans in Guangzhou. It was pretty neat to see that because from what I was told by an agency that there has been prejudice until very recently. One night Doug had to go out for water. As he was walking down the street a black guy walked up to him and offered him drugs. I guess we now know why some of the Africans are in China. It makes me sad.

Thursday, April 11, 2013

Paperwork In China Is All Done

Today we had our Consulate appointment. This appointment is to clear all adoption paperwork done by China and start the process to get Gideon his Visa. We had to be in the hotel lobby at 7:45 am to go to the Consulate. We were a bit confused because I was sure the appointment was for 10:00 am but Doug knew we were to be in the lobby at 7:45 to meet our guide. Come to find out our appointment was at 10:00 am  but the guide didn't want to have to make two trips that are only 15 minutes to bring 2 families at different times. We were the lucky ones that got to wait without being told.

We got to the Consulate and had to wait in a large area that was open to the wind. It was cold and we hadn't brought Gideon's coat. We had no idea we would be waiting there so we weren't prepared. We waited for an hour and a half with no seating. China does not believe in seating. No matter where you go there is no where to sit, even in the hotel lobbies. I've never seen anything like it. Gideon did good for the first 30 minutes then got very antsy. Doug rode with him up and down the escalator for a while then came back and we waited some more. Finally we were brought up to the area for adoptions and waited another 30 minutes. Our turn came for the swearing in and paperwork. About 10 other families were there with us so it was a good size group. They called up families one after the other. It got to where there were three families left and we were one of them. After being there for over 2 hours we were not surprised that we were the last family called up.

All went well at the window. All the paperwork was in order and we were done in a few minutes. We then were able to tell the person thank you that helped us with our expedite. It was nice to see her and let her know of our gratitude for what she did.

At the beginning of the consulate appointment an officer gives instruction for the families. Gideon had sat on a chair next to me and Doug was standing next to him. Doug decided to sit down so Gideon was on the edge. We thought nothing of this until there was a loud thud and a scream. I looked over and Gideon had fallen sideways off his chair, hit his head on the corner of a metal piece on the wall and caused the whole room to look over. I jumped up and picked him up. I had no where to go and I knew that Gideon would want Doug. I handed Gideon off and the officer asked if Gideon was OK. I was so embarrassed, humiliated at failing as a mother and worried about Gideon's head and heart that my response was "I don't know." It didn't come across the way that I meant it and I knew she was worried about offending me. Another mom came over  and put her arm around me and said she was sorry. That was all I could take and broke down crying. Now I was even more humiliated.

When we asked for our officer that helped us with the expedite I discovered she was the same officer that had asked if Gideon was OK. I had the opportunity to apologize and we both tripped over ourselves as we tried to explain ourselves. I still don't feel good about my explanation so I will need to email the officer to apologize again.

After the consulate we went back to the room and Gideon fell asleep. We waited for 2 and a half hours for him to wake up. Doug finally woke him up, we fed him lunch and left. Because it was raining cats and dogs we went shopping again. We were really hoping to go to White Cloud Mountain and hike but that won't be happening this trip. Doug keeps saying things like, next time, as though we will be back. Maybe some day.

We leave tomorrow for Beijing and then off to Seattle on Saturday morning. I have such mixed emotions about leaving. We have gotten into a groove and I am doing so much better accepting Gideon for what he offers. All of your prayers are being answered. Thank You!! I want to go home but I will miss China.

Today Gideon has done very well emotionally. He is accepting me more and even asking for me. He allowed me to help him while he was having trouble with his heart. I have fed him most of his food today and he comes to me when he needs something. Tomorrow may be different but he is making progress. It is interesting to watch him reach out emotionally and physically and then quickly pull back. He wants to trust me and allow me to nurture him but he is afraid. The fear is no longer showing itself as anger so much but as fear of attachment. He is also copying us a lot. A few minutes ago Doug burped, if you know him you know he knows how to burp. Gideon started trying to burp and made some funny noises. We all started laughing and Gideon did it again. The more he gets comfortable the cuter he becomes. Some friends predicted that Gideon will be like a rock star when we get home because he is so cute. I think everyone will love him!!!!

We see this often. Gideon loves his belly button.

In less than two weeks we have gone from this......

To this!

We are so gratefull to have Gideon.
 He is a Walker and was meant for this family.
What a blessing for us all.

Wednesday, April 10, 2013

Evidence of a Kiss

See the pink lipstick on Gideon's cheek? My evidence of a kiss he asked for.
Yep, we had a better day.
He also asked for me to hold him after being in the front pack with Doug for about 2 hours.

These next two pictures are of the dining area for the adoptive families at the Garden Hotel.
They set up tables in a hallway and when it gets too full they pull in patio chairs and
continue down another very cold hall so the children are not in the main dining area.
We are treated like second class citizens. The difference in service is amazing from the main dining area
to the halls. They hardly clean up the plates or even acknowledge our existence.

This area is where all the cleaning up of the tables takes place.
We have to walk through it to get to and from the food and tables where we get seated.
Every day they have tried to seat us in the coldest hall but I have had to
ask, well force, them to seat us in the warmer hall.
Gideon just can't do the cold with his heart issues.
It causes him to have a harder time breathing.
Our experience from the last time at the Garden to this has been very different.
I wish we had the connections to get another hotel for the adoptive families where
Children are welcome and families are treated with the same respect as the other guests. Doug felt like people needed to know a little more about the Garden Hotel.
This is where many of the families stay because of recommendations or the requirements of the agencies. A lot of what goes on in country feels like a racket when in comes to adoption. As families we really don't have much of a choice so the costs keep going up and the service is going down.
I recommend families check out the Ramada Pearl. It is a nice place and very close to
where we get medicals and the new consulate when it opens.
It's also cheaper by $50 a night.

One positive of the seating we have, a nice view.
We have watched the waterfall and rain during breakfast every morning.
As we sit watching the rain we realize we once again will be changing our plans for the day.
It has been so rainy. The last couple of days it has poured.
When it starts raining like that all the fish collect at the base of a tree in the water.
I don't know if they are trying to get out of the rain so they don't get wet or something.

These are our new friends. Sally, Kelly, Logan and Cori.
We have spent some time with them and really enjoy their company.
Sally is the friend that went to church with us.
Kelly is great! She is a single mom that now has 2 children.
My hats off to her. Logan is a handful and yet she does so well with him.
Cori is a great sister and daughter and a lot of fun.
I wish they lived close to us. I know we would spend time together and have lots of fun.

Gideon wanted to sit next to me on the subway. He started talking with this lady
next to him. She was so happy and kind.
Gideon kept trying to get her watch off and she just smiled and let him.
As we got off the subway he turned and said bye bye in his sweet little voice.
He then had to say bye to all the rest of the train.
He really is cute.

Gideon's heart did better today. He still had several times that he panicked and turned purple.
We have a doctor here with us. He has a friend that is a cardiology surgeon.
This friend described what is going on and said that it feels like they
are under water and can't breath. It seems to us that Gideon's reaction
when he struggles is just what you would expect from a situation like that.
He more often turns purple when he struggles and his episodes, I don't know what else to call them,
are worse overall. We are getting pretty good and anticipating when this will happen.
The first thing to happen is the change of color in his face then fingers and hands.
He will then start wheezing or just go into a panicked cry and start to topple over.
Today I was able to catch it twice before he got to the panic stage.
By the point he cried out Doug already had him in his arms.
I think I will need to be with Gideon at all times once we are home.
I guess I can put off my laundry, I don't like to do it anyway.
Better yet, Hannah can keep doing it. :)

This is a picture of the front of the toy market.
We went today because it was indoors.
I would love to do something outside that does not include shopping.
I really don't like shopping but I like sitting in a hotel room all day even less.
Now I just have to find things for the older boys to bring home to them.
Ideas would be greatly appreciated.

P.S. Jason and Ressa, Gideon gets so excited when he sees pictures of you on the computer. We won't let him forget you!

Tuesday, April 9, 2013

Happy Birthday Niya!

We want to wish you a happy birthday Niya. We are sorry that we aren't there for you but we are thinking of you. We will celebrate on Sunday OK? Make sure you have your list of food so I can go shopping when we get home.

A Bad Heart Day

Today was a tough day for Gideon, or as many know him, Bergen. I understand that it was posted on the LWB Facebook page that Gideon is on his way home. Yes, Bergen is now Gideon. Well, Gideon woke up with a smile but very soon after started to fuss and get cranky and blue. That's somewhat normal for him in the mornings so we didn't get too concerned. As the morning went on he started to wheeze and be out of breath most of the time. We were scheduled for a shopping trip and because these symptoms have been pretty common we didn't get any more concerned than normal so went went anyway.

We were on Shamaian Island for our second stop and while there Gideon went up and down a ramp 3 times. it was maybe 4 feet long. After the third time he sat down on the steps and played for a couple of minutes. He stood up and started to cry a little and all of a sudden he cried out in panic and started to sway. I grabbed him as fast as I could before he fell down (he falls A LOT) and handed him to Doug. He has to have Doug when he isn't doing well. Not really, he has to have Doug all the time. He turned more blue than ever and his whole hands were purple. He was wheezing and couldn't catch a breath. We got very worried. From then on he never really recovered until late in the evening. By 2:00 pm he had three episodes like this. Even after that he still struggled and was not doing well.

We had scheduled with another family to go this evening to the area where the Asian Games are played. Just down the street is also an American store with a lot of American food. We are hoping to get some Benadryl for Gideon in hopes of getting him to sleep on the air plane home. If he sleeps he will do better breathing. If any of you know if Benadryl is OK for a heart baby PLEASE let me know ASAP. I won't give him any meds until I know it's safe. Back to the story. Because Gideon was doing so bad we chose to cancel the trip and stay in. We fed the fish outside and that seemed to help him some. We then went to Subway and brought it back to our room. Gideon was doing well enough that he ate quite a bit of sandwich and noodles for dinner.

He is now sleeping and we pray that he will have a better day tomorrow.

As far as bonding with mom, that too was a bad day. I could be no where near him without him telling me to go away. He was back to scratching and hitting me. It is so hard to have a child that needs your help but you can do nothing for them. I just hope that Gideon takes to me soon. Doug won't be there when we go to most doctor appointments and Gideon will need me when he goes in for surgery and hopefully surgery will be very soon!

Not too many pictures today.

The group stopped at this famous statue, at least for adoptive families.
Gideon freaked out at the children and wouldn't even go near. That's Ok, I didn't really want another picture at the statue. I know, I'm a party pooper.

While out shopping. This is how Doug's day goes.
Gideon looks good in these pictures. It's the first time today that he wasn't blue.
It only took a few more minutes and he was blue again.

Dinner. We don't let Gideon feed himself.
He is a disaster. When he is at home in the highchair he can feed himself again.
Carpet just doesn't clean well.

Gideon loves to put the pillows from the couch on the floor and use them as a seat.

Self explanatory.

Monday, April 8, 2013

Great Progress

Today we just hung around the hotel most of the day. Doug was able to take advantage of some time to do a few things for work. As we sat around Gideon interacted with me, Mom!  He would sit on the couch next to me, lay his head on my arm or play with me. He did so well. I am surprised at how the day had gone. There was even a time that he wanted mama not baba. Yesterday he made some good progress but I expected him to back track today. Thankfully he only went forward.

Gideon hasn't had a meltdown for a couple of days but today he decided it was time. We met a couple that picked up their son today. We went to check on them and see if they needed anything. Sometimes the new child has such a hard time that you can't leave the room but on that first day you still don't have water or food. We got there and their son has done great so far. They were having trouble connecting to the Internet so we offered for them to use our computer to talk with their kids at home. They called a while later and came over. Of course that is when Gideon decided to have his trouble. I had to take him out of the room while they Skyped. I was worried Gideon would have a hard time but Doug needed to help them fix the connection. Gideon and I spent the next 20 minutes riding the escalator up and down, up and down. He only asked for Baba after I told him we were going back.

Gideon has started saying some English words. His favorite is "go". He also is now saying "Good Job" and several other words. He is understanding other things as well. He is so smart. He is also thinking twice when he wants to hit. We don't get hit more than once or twice in a day now. I haven't gotten scratched in a couple days either. We are teaching him to throw things in the garbage and not throw everything he sees. He loves the garbage! Everything goes in it! We have to take things out now. :)  Gideon is learning fast. I fully expect to see these behaviors come back once home but now he knows they are acceptable so we can deal with them a little easier.

I have made some observations with Gideon's heart. It seems that his lips start to get blue and soon after he gets fussy. Sometimes that fussiness turns into crying and needing to lay down and other times he will start to perk up after a while and we can distract him. He gets his color back about same time he stops fussing. Now, I don't know if this is what is going on but I am speculating that, like my father, Gideon's heart acts up and he starts to not feel good. It would make complete sense that he wouldn't feel good when his heart is acting up. We'll know better as we watch him more and see the patterns. I'm just anxious to get him home to see the doctor.

One last thing. Thank you everyone for your support!!! The comments and emails have kept me going. It's easy to know in your mind what is going on but very hard to have your heart follow. This life is full of ups and downs and the more I experience the more I realize I need others. Thank you for being there for me. Some of you that emailed I will get back to you very soon. I just needed a couple of down days.

Sorry, this is the last thing. Jason and Ressa made it home safely for those who wanted to know.

Gideon eating the fish food. Don't worry it was just bread.

Gideon loves Ressa and Jason. Ressa and Jason love Gideon too.

Gideon gets more smiley every day. He really is a cute little boy!
He aslo happens to be one of the cutest Chinese kids around.

Added some pictures for good measure.
We didn't get any new pictures today because it was pretty boring.