Saturday, March 5, 2011

Birthday, Wedding, and then Surgery

Well we went to see the cardiologist on Tuesday for her to be checked over from her last Catherization.  She has healed very well from this procedure.  He then told me that he would be discussing her case with the entire team on Wednesday evening and that he would call Monday to let us know the outcome and the game plan for her heart due to scheduled vacation days.  Well we were totally shocked to hear from him that evening.  So the game plan for her is to shunt a vessel, made of gortex from her right ventricle to her right lung.  Sounds simple right?  But in reality it is risky and the phrases "she will be very sick and it could take months for her to recover"  The main problem is that the pressure in that chamber is twice what her entire body pressure is, which puts her at risk for atrithmia's and a heart attack.  The surgeons are prepared for this and while she will not need to be on a heart-lung machine during the operation, she will most likely need to be on one after the surgery to allow her body to adjust to the pressure.  It will also allow her lung to adjust to a normal amount of blood flow.  Her right lung has not seen normal blood flow ever, so when blood is pumped in there her body will react in a way to fight that flow.  So it is a really risky surgery in a nutshell, but it totally outweighs the reality for us of only having her around for 20 years.  Also they are hoping that with normal blood flow to that lung that the pulmonary artery will grow and that they can continue to stent it larger and larger.  They have done this before which puts us at ease, but I thought I was going to throw up after I got off the phone and Matt said his chest hurt.
Before this all occurs we have a birthday party coming up for Mia!!  I am so excited to have her first and 4th birthday party!  And then the next weekend we will have a wedding for Matt's cousin!  So she will have some really fun weekends before she has a rough surgery.

Other than that things here have been pretty status quo here... 

Jacob's favorite past time to get through the winter months is to play hoops in the kitchen

Logan continues to pass the time with video games and oreos

And Mia continues to crack us up everyday!  We especially enjoy when she tells us what's up in Chinese and uses her hands to do it!

Stay tuned for an update about Mia's 4th birthday!!!!

Saturday, February 19, 2011

Mia's latest heart news

Ok... this post will lead to some troubling news so I thought I would start with that we have had Mia for 2 months today!!!  Needless to say we are so excited to have her in our lives.  She is a joy and so much fun!  She is picking up english so quickly... it is truly amazing.  She enjoyed her first superbowl party and had a fun time staying up late!  She is very resilient and loving and I must say that if you asked her she would agree that she loves to be a part of our family too! 



And now onto the heart news.  Mia was scheduled for another catherization to get more information in the right lung.  They could not previously get into this lung before because they could not access the artery.  At that time they thought that maybe their were no viable arteries there, but a CT scan showed that she did have arteries and vessels to the right lung.  So they scheduled her for this cath, using the CT scan as a road map, so they could measure the pressures and make sure she does not have pulmonary hypertension.  So the results of yesterdays test was that her left lung is screwed and will always be screwed.  She has pulmonary hypertension throughout the lung, and lungs cannot be repaired.  This news was not completely shocking to us, we kind of already knew that.  The right lung is a little better.  With a decent sized artery on that side with vessels that her body has developed to assist her in getting more oxygen.  So let me post a picture of what pulmonary atresia looks like, and then I can explain further.

 
When you look at the pictures the pulmonary artery on a normal heart is large, but her's is more like a vein.  She also has the 2 holes in her heart.  The hole between the atria's is life sustaining for Mia and without it her blood can't mix in any oxygenated blood.  The hole between the ventricles is not necessary... it's not hurting her or helping her either.  The RV is also a non-working chamber for Mia... it is very thick and under high pressure, because of the tiny pulmonary artery it pumps against itself.  So to recap... she is living on one good lung and 3 chambers.  So the next step is that they will present her case to the surgeons and see what they suggest.  Right now our goal for Mia is to improve her breathing a quality of life.  This will most likely mean shunting vessels from her body from her good lung to her heart, but it depends on what the surgeon says.  We are also putting her on baby aspirin to thin her blood.  When you have poor oxygen levels your body produces more red blood cells to try to get as much oxygen as it can, so Mia's blood is very thick.  Thinning her blood can only help to get more blood flowing more easily through her body.  In the long term, as I said before, she will need a heart/lung transplant.   As she grows, it will become more difficult for her.  We will wait to see what our favorite doctor,  Dr. Allada, says is our next step.  Thanks for everyone's support.

Friday, January 28, 2011

1 month already!!!

OK, so this is only 1 week late, but Mia has been in our life for one month already!!! It is really hard to imagine life without her now.
There is so much to report. Mia is doing very well with her adjustment and amazes me everyday. She is an awesome sleeper and actually naps for an hour and a half every day!! The boys gave up naps by the time they were 2! She is a very happy child, who loves to snuggle and play with her brothers. She gets so excited when they get home from school. And speaking of the boys they are awesome with her and a really enjoying having a little sister. They are a great help to her and will play with her during the day. Three children in the home, definitely make it a circus act here! Mia is also amazing us with her language development. By the end of my second week in China I was completely annoyed with the language barrier and could not wait to get home and speak English! Mia, on the other hand, is rarely frustrated by the language barrier. She really wants to learn and repeats everything we say!

And speaking of English, here are the words that little miss Mia has picked up already and says consistently throughout the day.

Mama- she says this about 100 times per day!
Daddy- she says a lot as well
Yogan - aka Logan
Jaca - aka Jacob
milk
wata - water
bebe - baby
bye bye
hi
tot - hot
baayea- potty
puppy/ dog (or "go!".... mia is not an animal lover)
cat (same as above)
color
there ya go - when she gives you something
come here
come on
cheerios/ chips/ noodles
bear
i love you
this one
huh?- when you call her name or she doesn't understand you

I am sure there are more that I have forgotten, but it just gives a sense of how quickly she is picking up english!


She loves to dance and music. She is not a huge fan of TV, but the shows that grab her attention most are Little Bill (that coincidentally have the same episodes on that I watched 11 years ago with Jacob), Olivia, and the Fresh beat band.


We saw the cardiologist last week and she has another heart catherization scheduled for February 18th. They think that there are some better veins to the lung that they could not get into on the initial cath. During this cath they will use the CT scan that she had as a road map to her vessels and be measuring pressures, etc. If they can do something to get her better oxygen, they will do it within the cath procedure. We are just hoping that some of those vessels are just blocked and not scarred. It they are not scarred than their may be some surgical interventions that they can do, we just won't know until we have the test done. Fingers and toes crossed!
We just love and adore this little girl. She is truly a joy... funny, loving, and sweet. We know that her abandonment must have been a difficult decision for her birth parents, being that they had her for the first 6 months of her life. I could not imagine making this decision and feel that they made the choice to better her life. I have no idea who her birth parents are, but I just wish that they somehow know that she is happy and loved.

Sunday, January 9, 2011

Our trip to China... in a nutshell. And what has happened since we have been home

Sorry this has taken me so long to post. I had no idea that blogging, along with facebook and youtube is blocked in China. I backtrack through the trip now.

We left on Thursday evening (12/16) in a rental car for Cleveland. We slept a grand total of 3 hours and then boarded a plane to Chicago. After a 2 hour layover in Chicago we flew to Shanghai China.... approximately 14 hours by plane. We had a 5 hour layover in Shanghai and some trouble with our tickets, but we got our tickets and were ready to travel to Xi'an China... then home of our daughter Mia. With layovers and flying time it took a total of 30 hours to get to China! We arrived at our hotel at midnight and crashed.

Sunday (12/19)
Suzanne, my sister-in-law woke us up at 9:45 to catch brunch in the hotel. After some breakfast we decided to do some sightseeing before we got Mia. We went to the Goose Pagoda that day. It was very pretty with lots of beautiful Buddha’s and buildings. We had to find a taxi back and seemed to find the one who was having a bad day. He was extremely aggressive in his driving. The interesting thing about driving in China is that there are really no rules… figure out a way to get there and everything is fine. The taxi’s will push pedestrians out of the way and you are really taking your life into your own hands. Matt really enjoys the taxi rides and would love to drive this way back home... LOL!! At 3:45 we met our guide in the hotel and she took us to meet Mia. Mia was completely freaked out, but there were no tears when we in the room with her caregiver. Then we got into the van to travel to get her passport pictures taken and she LOST it. Crying…. Actually sobbing for the car ride and while in that building. I felt so bad for her… she was very confused. We got her back to the hotel and started giving her snacks. She allowed us to take of her coat, but not her snow pants or her shoes. She ate and ate and ate that night, for what was 4 hours straight. We actually had to cut her off for fear she might vomit. We decided to put her down for the night and she allowed me to take off her snow pants, but would not change her clothes or take off her shoes. She slept very well. At some point during the night she took off her shoes.



Monday 12/20
Mia woke up and was pleasant. She allowed me to change her clothes. We also gave her a bath, which she stood for and would not play with any toys. She did not cry during the bath though. Breakfast was the same…. she ate and ate and ate some more. We had to go to the notary office and apply for her passport this day as well. Our guide met us and Matt and I just went to complete these steps. What we noticed by this time is that every room, building, etc is really hot. When we asked our guide about this she told us that the gov’t controls the heat and then everyone pays the bill to the gov’t monthly! They must turn in up so high to reduce the number of complaints. Mia was doing well with her potty skills. It's wonderful to have a potty trained child!




Tuesday 12/21
This day was a free day with no obligation for the adoption. We went outside the hotel complex into the city and went to a large shopping area. The one thing I can say about China is that it is filthy. The smog is disgusting and some people wear masks. We also did some sightseeing. We decided to go the the bell tower and the drum tower at 3:30. So by the time we were done it was dark and we were having a hell of a time trying to find a cab. There are also a lot of steps in China that I would have to carry Mia up. With her heart condition she cannot walk far without exhausting herself. She additionally will not allow anyone else to carry her but me at this time. She was starting to become more comfortable with us and was very attached to me.



Wednesday 12/22
Today was the orphanage visit and was very overwhelming. We were dropping off the donations and were allowed to see where Mia used to live. We dropped off the donations in her old play room. Her friends were yelling her name and were very happy to see her. When Tony and Zan were unloading, Matt and I were playing with the kids there… many of whom were severely disabled and it was very overwhelming. Mia was OK playing with her friends for some time. Then we went to see her room. At that point she became very overwhelmed and was crying. I picked her up and we quickly left. JoJo, our Chinese guide and translator, reassured her in Chines that she was leaving with us and asked her if she would like to return to the van. Without hesitation she nodded her head yes. She was fine once we left the orphanage, but that night was somewhat of a challenge and became very stubborn about bedtime. She refused to lay down n her crib for about a half hour, but eventually did.





Thursday 12/23
Terra cotta warrior day. It was very cool to see them! They are very amazing and it is amazing how they unearth them. Mia was testing her limits that day and was behaving like a typical 3 year old. Mia can be very stubborn and wants what she wants when she wants it. The Terra cotta warriors were really amazing to see.



Friday 12/24
Christmas eve! Hung in the hotel until checkout at 12. During the time we were hanging out, at one point Mia became upset and then inconsolable. She was sobbing like the first night we got her. We think that she thought that our first hotel was our home and then we were moving her again. She was very upset. Also our guide JoJo took us to the airport and Mia connected her with the orphanage and would become very upset when she saw JoJo. We believe that Mia thought she was returning to the orphanage and was also confused about the move. Flight to Guangzhou at 7:30 pm. Mia did fine with the flight that day, but hates the seatbelt. She is bright so she was able to figure out how to take it off and I had to hold it closed during take off and landing. Other than that she did fine. Until we got to the hotel and sobbing again... this was the toughest move for her.

Saturday 12/25
Christmas!!! Mia had her medical exam today and her TB test done. Mia passed her medical exam and did well with the TB needle. Then we spent time in the playroom going over paperwork. In the afternoon we hung out, watched TV and went out to dinner. It was decided this day that Matt would return home early after talking to his mom.



Sunday 12/26
Talked to the boys and wished them a merry Christmas! They were having a good time and they were very excited that Matt was returning home! Logan is having a harder time without me, so I felt relieved that they will be home with their dad soon! We walked over to a traditional Chinese market today, which was really cool and then took a bus to a tomb. EXTREMELY boring exhibit to visit. Afterward we got together with another family for Thai food, which was a lot of fun.

Monday 12/27
Wake up at 6, eat breakfast and put Matt in a 7am cab to the airport. Zan and I go to Starbucks and then I take Mia to the playroom to meet the rest of the group to have the tb results read. Mia was negative as were all the rest in our group. Went to lunch, Mia had a nap, and then out to a bookstore in a large shopping area. It was crazy and we were the ONLY american’s there. Ate dinner and came back to the hotel. The cab situation is much easier in this city. It is also cleaner here and really warm... about 70 degrees. Mia is a doll and was doing much better everyday!

Tuesday 12/28
I took Mia in the morning to have her TB test read and it was negative!! We met a new family from Boston that day and they were a riot. We had a wonderful time with them and spent the evening drinking wine while the kids slept. Let me tell you I needed it. I could not wait to go home by this point.

Wednesday 12/29
Happy Birthday to Matt. Matt was now home and we were doing more video chat with the boys. Tony, my nephew was sick in the room with a sinus infection, so Zan and I went to a park to see the 5 goats, the symbol of Guangzhou. The park was beautiful and it was nice to walk around outside. Mia enjoyed it too! At this point I have noticed that I have been getting more and more dirty looks from the Chinese people about my adopting Mia. They look at her and then look at me and then glare. I looked up on google translate "you didn't want to take care of her, so mind your business", but it was too hard to remember... LOL!

Thursday 12/30
Consulate day. On this day I pledged to never abuse or abandon Mia and to love her as if she were one of my own. We also received her Visa to return with us to the USA! That evening we just ate in the hotel and spent the day watching TV.

Friday 12/31
Pack and fly to Beijing. Mia did much better with this transition and was quite bonded to me at this point. She was also able to comply with the seatbelt!

Saturday 1/1
Zan and Tony went to the great wall and Mia and I hung in the hotel. It sounded beautiful... but they said it was freezing cold.

Sunday 1/2
This day was packing to go home and we went to visit the forbidden city. It was pretty cool to see, though Mia had a rough time about halfway through. With her heart condition it is very difficult for her to regulate heat and she was very cold. We finished quickly and got her back to the hotel. Off to the airport at 2:oo and in the airport we had some trouble with Mia's passport and they were not going to allow her to pass through Canada on layover. After some talking and my sister in laws quick thoughts to call the Canadian consulate... we got her on the plane... phew! The plane back was 12 hours.. we got the tailwind! Mia did great on the plane... she ate, she played, and she slept. We got through Canada and then boarded a prop plane to Pittsburgh form Toronto. It was something out of Indiana Jones!!! But we made it and I was never so happy to be back in the USA!! There were many well wishers at the airport that evening.... but my favorite were the boys. I missed them so much and it was wonderful to see them. We got home from the airport around 12 midnight and we all went to sleep. Mia slept well that night, but was up very early.

Monday 1/3
The boys woke up shortly after Mia and wanted to see her and play with her. She was not herself. Her personality was completely different and I just assumed that she was having some rouble transitioning to the house. The boys went into school late that day and shortly after they left she threw up. I put her in my bed and she slept for hours. She refused to eat, very unlike her, she literally eats anything that isn't nailed down and went to bed at 6:30. She slept poorly that night up every 2-3 hours crying. Again I thought it was transition.

Tuesday 1/4
She woke up hungry and ate a bunch of food... and then threw it all back up. We had a previously scheduled appt with the pediatrician to get her physical and immunizations completed. When we arrived I let them know about her vomiting, and due to her heart condition they sent us directly to Children's hospital Pittsburgh. When we arrived through the ER they did a sonogram of her heart and also determined that she was severely dehydrated from the flight home. Due to the dehydration and the results of her sonogram we were admitted to the Cardiac ICU. They ran fluids for the night and into the next day and she was getting better. Our pediatric cardiologist on Tuesday evening gave us a poor prognosis as he could not hear a good murmur and was not sure about her blood flow in her heart. Also because of the dehydration, they could not get a good look at her heart and lungs. The doctors scheduled her at this time for a Cardiac Catherization for Wednesday afternoon.

Wednesday 1/5
Mia was slowly becoming more of herself. She was playing and was such a good little patient. We spent a lot of time snuggling in the hospital bed. Her cardiologist was pleased when he listened to her and could hear a better murmur which made him more hopeful, though he told us we would have to wait for the results of the Cath to know what was going on for sure. After the Cath, they told us the bad news and showed us the pictures of her lungs. Mia not only has tetraloogy of fallot... she also has pulminary atresia. The prognosis is not the greatest. Pulmonary atresia is a malformation of the pulmonary valve in which the valve orifice fails to develop. The valve is completely closed thereby obstructing the outflow of blood from the heart to the lungs. This is why she is bluish most of the time and this cannot be repaired. She also has 2 holes in her heart between the Atrium and Ventricle... which we knew from her report. We thought that these could be repaired, but if we repair them she will die. She also only has 3 working chambers. This night the prognosis was really bad, but they wanted to run some more testing to see the arteries in her lungs and what we could work with. We cried and slept very limited this evening... jet lag was also a problem.

Thursday 1/6
Mia was taken off IV fluids and was allowed to eat this morning... which made her VERY happy. We did her lung profusion test this evening and learned that her left lung is stronger than her right and profuses oxygen at 60% compared to her right lung at 40%. News that we can work with, but we are not sure about the arteries yet. Jet lag caught up to both of us this evening and we slept from 6:30 to 4:00 the next morning. I felt much better to be back on our time.

Friday 1/7
Mia had her CT scan at 7:30 am this day. They gave her some sedation this day. We were also scheduled to go home this day and I could not wait. When we saw the cardiologist he gave us, what he called a "ray of hope". She has some nice arteries that they can see in the CT scan to her lungs. The hope is to shunt vessels from her legs to allow more oxygen rich blood to her lungs. He needs to put all 3 reports together to let us know the next plan. We will never be able to repair her heart... only do small surgical interventions to improve her quality of life. She has a life expectancy at this time of 25 to 30 years.. We are all hoping that medical science will improve in this time so that she can have a heart lung transplant as a young adult. At this time the anti rejection drugs only last about 5 years with a transplant so that is not an option for her. We will see him again on Jan 20th. He let us go home and she is on oxygen, when she sleeps and supplimentally through the day as she needs it. She is such a sweetie and doesn't fight it at all.

This weekend we played and played and played some more. She has adjusted to the house beautifully. She was initially terrified of George, the dog, but is now more tolerant of him. She absolutely ADORES her brothers. She finds them hilarious and follows them all over the house. She is also picking up English very quickly. She is very bright. She is also very loving and is sleeping through the night now, with an hour nap in the afternoon. She is so sweet and we love her very much.

Thanks for reading... more to come of the adventures of Mia!

Monday, December 13, 2010

Sooo We are going to China on... SUNDAY!!!

We leave for China this Sunday and we will come home on Jan 31st. We have been running around today like nuts, but we will pull it all together in the next 4 days! Check back daily during our trip! We plan to update the blog daily provided we have internet access!

Saturday, December 11, 2010

Heart ache

7 years ago my life and that of my families changed forever. We are not the same people that we used to be... none of us. We loved him so much. It's actualy becoming hard to imagine what he would be like now. He is always an infant to me, that's the way I remember him and probably always will. I have done my share of crying yeserday and right now and have not been sleeping welll the last 2 nights. I will get through this anniversary as I always do. Sometimes I greedily think I should never have to, but this is my life. My heart with a huge hole... it's shrinking, but it is always there.


Tiny Angels rest your wings.

Sit with me for awhile.

How I long to hold your hand,

And see your tender smile.

Tiny Angel, look at me,

I want this image clear....

That I will forget your precious face

Is my biggest fear.

Tiny Angel can you tell me,

Why you have gone away?

You weren't here for very long....

Why is it, you couldn't stay?

Tiny Angel shook his head,

"These things I do not know....

But I do know that you love me,

And that I love you so".



Saturday, December 4, 2010

Travel Announcement is on it's way!!!

Our TA is on the director's desk as of yesterday!!! We should know that dates that we will travel by Monday or Tuesday! WOOOHOOOO!!!!