Our girl's heart

We have been asked a lot of questions so I thought I would explain (copy and paste from a medical site) our baby girl's heart condition. We are not exactly sure what she has. The sonogram of her heart does not make complete sense, but we believe that she has a condition called Tetralogy of Fallot. We do not have a concrete diagnosis because the test used and results are poorly written. Our social worker explained that where she is located in China, the medical technology is poor, and they will not spend the money on a "orphan" to get further testing completed in a major city, such as Beijing. We will complete further tests at Children's Hospital of Pittsburgh as soon as we get her home. So here is her condition...

Tetralogy of Fallot involves four heart defects:
A large ventricular septal defect (VSD)
Pulmonary (PULL-mon-ary) stenosis
Right ventricular hypertrophy (hi-PER-tro-fe)
An overriding aorta


Ventricular Septal Defect
The heart has a wall that separates the two chambers on its left side from the two chambers on its right side. This wall is called a septum. The septum prevents blood from mixing between the two sides of the heart. A VSD is a hole in the part of the septum that separates the ventricles, the lower chambers of the heart. The hole allows oxygen-rich blood from the left ventricle to mix with oxygen-poor blood from the right ventricle.

Pulmonary Stenosis
This defect is a narrowing of the pulmonary valve and the passage through which blood flows from the right ventricle to the pulmonary artery.
Normally, oxygen-poor blood from the right ventricle flows through the pulmonary valve, into the pulmonary artery, and out to the lungs to pick up oxygen. In pulmonary stenosis, the heart has to work harder than normal to pump blood, and not enough blood reaches the lungs.


Right Ventricular Hypertrophy
This defect occurs if the right ventricle thickens because the heart has to pump harder than it should to move blood through the narrowed pulmonary valve.

Overriding Aorta
This is a defect in the aorta, the main artery that carries oxygen-rich blood to the body. In a healthy heart, the aorta is attached to the left ventricle. This allows only oxygen-rich blood to flow to the body.
In tetralogy of Fallot, the aorta is between the left and right ventricles, directly over the VSD. As a result, oxygen-poor blood from the right ventricle flows directly into the aorta instead of into the pulmonary artery to the lungs.

Outlook
Together, these four defects mean that not enough blood is able to reach the lungs to get oxygen, and oxygen-poor blood flows out to the body. This needs open heart surgery to be repaired.

This is scary stuff for us, but with repair the outlook is good. She will never be a track star, but that's OK with us. We have been asked several times why we are adopting a little girl with a bum heart. (that's how I like to describe it) The answer is simple, we felt a connection with her, and she will die in China as a young adult if this is not repaired. As many of you know, Matt was adopted when he was 3 1/2 and he did not have a medical condition that threatened his life, but the environmental situations that he was involved in through the foster care system, he would have chosen a different, most likely more delinquent, path in life. Matt felt VERY strongly that we bring her into our family. I guess you can say he is "paying it forward" So no, she is not perfect, but who is? We feel that a lovely little girl who will enrich our lives as much as we will enrich hers, and we can't wait to bring her home!

Our Duaghter An Banyun.... Mia is here!!!

Ok So I know that everyone is dying to see her so I'll post her pictures first. Keep in mind that we have to put a smile on her face and that they shave all the babies heads to keep the lice away. Also she looks much bigger than she actually is because they have several layers of clothing on her. The do not keep the heat very high in the orphanages, so it is common for the children to wear 4-5 layers of clothing. She is actually only 22 pounds and 2 feet 8 inches tall, that means she will wear 12-18 month clothes. She is a quite a little peanut! We just think that she is precious and can't wait to get her home! (The middle photo is my favorite!)

So here is what we know about her. Banyun (mia) was found abandoned at the orphanage gate on September 25, 2007. They determined her birthday to be March 10, 2007 according to her growth and development. She was abandoned at approximately 6 months old. There was no note attached to her. We can only assume that her birth family could not care for her or was unable to provide her with the medical treatment that she needs. I'm sure it was a difficult decision for her birth parents to make.

Banyun (mia) likes to eat steamed eggs, milk, noodles, congee, and fruit. She likes rocking horses, tricycles, looking at books, being read to, and playing with dolls. When she plays outside she likes to slide and swing. She likes to play hide and seek and likes to be cuddled :) She plays peacefully with other children, does not grab their toys, and shares her cookies. She is a deep sleeper (woohoo!), she can imitate drawing Ines, she can place objects in and out of cups, she can stack blocks, she can turn pages of a book, she knows big and small and her colors. She speaks in sentences (in Mandarin Chinese though), and she knows her body parts.

Her personality is described as timid and shy (the boys will quickly change that I'm sure!) She enjoys music and toys. She likes to play peekaboo and hide and seek. She is talkative, has a ready smile (wish we could see it), and gets along well with others. She has a close bond with her caretaker.

Mia (Banyun) is in Children's Welfare Institute of Xi'an China.

Xi'an has cold and snowy winters and hot and humid summers. It is most famous for it's Terracotta Warriors that we carved during the first Qin Dynasty to deter invasion of the countryside. That will be really cool to see.

We are hoping to travel to China in May or June to get her. We will spend 2 weeks in China with her, so that will be an awesome adventure! It is difficult to determine what is exactly wrong with her heart. The ultrasound report does not really make sense, but it is apparent that it is one of 2 major defects. When we get her home we will have her heart examined and are prepared to have the surgery completed as soon as possible. I will be sending her a care package to the orphanage for her birthday.

We have sent a letter to China asking to adopt her and promising to love her as if she was one of our own. They have 2 weeks to agree to our adoption, they never disagree, it's just a formality. Next is updating all of our paperwork.... all over again! We will move as quickly as we can on this because the sooner the paperwork is done, the sooner we can go get her!!

Thanks for everyone's support and well wishes! We will keep everyone updates as this process moves along.

Christmas 2009!

So we managed to survive Christmas and all the fun that goes with it. We had a wonderful time with family, received some wonderful gifts, and enjoyed the holidays though we missed sharing them with Matt's mom when she was in NY. The boys has a great Christmas and received many surprises this year. There were many questions about Santa this year and this may be the last year... I'm not sure. I think Jacob knows, but just does not want to give it up yet. Besides how sad will that be. This year I pulled out all the stops.... footprints in the snow, reindeer food, and an email from Santa. We'll just have to see what happens next year....

Anyway, enjoy some Christmas photos....

Here's to a happy and healthy new year!

The day that changed my life forever

It will be 6 years ago on Friday that Killian died and the day that our lives changed forever. We still miss him, look at his pictures and smile, and talk about him. He is a living part of our family, even though he is not with us. Jacob found my journal in my bedroom the other day. Interesting he found it around this time, I did not journal for very long, just right after his death until his 1st birthday. Anyway, I'll share the story of this very sad day.

It was a normal day for us. I dropped and picked up Jacob from preschool and Matt was off work and caring for the boys that day. After lunch I headed out to work. At 7:00pm I was leaving my last appointment and the woman knitted a blanket for the baby. As I was leaving the house she asked "How is the baby?" "Perfect and wonderful" I answered "he doubled his weight and sleeps through the night, he's a great baby" As I was driving home, I called the house (like I always do) to let Matt know I was on my way home. The line was busy and I thought that was weird and continued to drive home. I kept dialing and it was still busy, now I was worried. A few minutes passed and the phone rang. It was Matt "we have a problem" he said. My thought was immediately to Killian, but I never thought he was dead. "Killian stopped breathing" I start screaming... "I did CPR, the ambulance just took him to Jameson Hospital" "I'll meet you there" and hung up the phone. I do not remember driving to the hospital at all. I turned into the hospital, passed the ER parking lot and parked in the wrong lot. I ran through the parking lot, but wound up by the gift shop in the hospital, I ran around like a nut and finally found the ER. I spotted a security guard and ran up to him, scared with tears streaming down my face. "My baby is here- where is he- i need to see him" "Calm down, you need to stand in line and register" A nurse came out immediately and took me back, she lead me into a small room with a sign outside that said Grief and Bereavement Room. This was the first time that I realized that he was not in good shape. Until then I had closed my mind to the thought that he would not make it, his was a chubby, healthy baby, give me a break. Matt comes running into the room, I remember that Logan had on only one shoe. The nurses were preparing us that he might have brain damage and will need to go to Pittsburgh for care if he pulls through. They asked us to call a family member so we called Matt's parents. Nurses kept coming in and saying "they are working as hard as they can for him right now" After about an hour, the doctor came in and said that he was gone. "We worked for an hour and have gotten no response" I thought to myself, and hour, it seems like 10 minutes "we will clean him up and you can go see him". We walked down the hall, the boys were with Matt's parents who had arrived, and went to hold our son for the last time. God was that hard. I scooped him up sat in a chair and held him, it looked like he was just sleeping, very peaceful. Matt held him next and sobbed. We were given as much time as we wanted with him. And then we left... it was really hard to fight every instinct you have as a parent to protect your child and we were leaving him alone in a cold, sterile hospital room.

I woke up at 5 am- no Killian- no baby to feed- i was overcome with sadness and laid in bed and sobbed. Matt was sleeping ( i later found out that he was up until 4am grieving). I decided to get up. Jacob woke up and cam downstairs "are you crying for Killian". "Yes, i miss him." "Can we go the the hospital and get him" "No, he died and is not coming home" "OK". Poor Jacob- so confused. Shortly after that the phone started ringing and did not stop for days.

Saturday was the day to make the arrangements. My parents came in from Jersey and were helping with the boys. We went out to make all of the arrangements. First we had to buy him an outfit and pick up the Christmas picture I had taken of him 2 weeks earlier. Of course I start crying at he Walmart counter... we get a frame and get out of there quick. Then we decide to go to sears to find a new outfit to bury him in, Matt requested something new because it would be too difficult to bury him in something he wore when he was alive. So it's a Saturday and it's 3 weeks before Christmas and I felt like punching every smiling shopper that passed me in the face... needless to say that was a quick shopping trip too. We get to the funeral home and meet a soft spoken man in a three piece suit. He showed us the casket, a small white casket with a velor lining and a little white pillow. We gave him the outfit, the picture, and finalized the plans. Off to the cemetery next. We met a man in jeans and a hooded sweatshirt, quite a change from the 3 piece suit weirdo of a funeral director. He showed us some available plots. Matt and his mom were diplomatically looking at where we were going to place him. I, at this point, am screaming in my head, "who gives a shit, pick a fucking plot of grass", but i kept my mouth shut. We picked some flowers, grabbed a beer and something to eat and went home. The mood with my parents was awkward- I went to bed early.

On Sunday, we had calling hours and the funeral director slowly pissed me off... i don't think he meant to, I just had no patience for his weirdness.

On Monday, we buried him. In snow. The last time I saw his face, the last time I touched him. Casket was sealed, blessings and all that stuff and then it was time to bury him. As we are standing in the snow I'm thinking "what a small hole, how fucked up is this, is this really happening". After the blessing of the grave, we left him, this time for good, fighting those instincts again, who leaves their baby in the snow. I do, my son is dead.

It has eased through the years, but I still miss him all the time.

Thanksgiving

I have been thinking about Thanksgiving today and all of the things that I am thankful for. First of all, for all of my blog readers who don't know, Thanksgiving is my favorite holiday. This is for two main reasons... the first is that it was our last holiday with Killian, so that alone makes it special to me. The other reason is that it is a very relaxed holiday, where we play a little football and eat a great dinner, and I just really enjoy it. It's almost the last relaxed day until after Christmas, or at least that's how I see it. Anyway, back to what I am thankful for. Of course the boys, even when they are at their worst I am thankful they are here and that they are healthy. Killian, for the 10 weeks that we spent with him that I will never forget. Matt and our marriage. It is pretty damn good... I'm not saying it's perfect or that we don't have our issues, but we are together and we have been through a hell of alot and it's still strong, and getting stronger every year. And my extended family members are great. They offer support and encouragement, and are always available to lend an ear. So I have a lot to be thankful for and hope that everyone has a wonderful Thanksgiving and can think of everything that they are thankful for too!

My little gobblers last year->

This years gobblers.. and their too cool pose ;)

Jacob is 10!

Jacob turned 10 on Saturday.... 10.... a decade old! That is just crazy, and hard to believe how fast he is growing up. It's a little sad too, but he had a great birthday! He received tons of lego sets, which really made him happy! The next day we had Zan's suprise party, so it was an eventful weekend to say the least. Jacob decided he wanted his party at the same place he had it last year, so we all went to the Olympic Fun Center and they had a blast! Here are some pictures of my big, bad, 10-year old!!!

Six

Six.... Killian would be six today. I often wonder what it would be like in our house with another crazy boy running around! I have been thinking about him more as his birthday approached and I can only say that I miss him more than anyone could know or understand. I was thinking about how different I am and will I ever be the same again? I am definitely not the same person I used to be. This could be a good thing, but it still feels like it's wrong, like I'm wrong. There is a hole in my heart that never heals. The dull ache is always there. It's like it shrinks for a while as we go through our daily lives and then becomes a big gaping hole when his birthday, death day, and holidays come around. I know that some people may think that our adoption is a replacement baby for him, but that could be further from the truth. She will be a joy to our family and a healer for the boys, especially Jacob (who remembers all the details of that night and has continued anxiety due to his brother's death). Matt and I simply have more love in our heart for another child. I have also been thinking about how not to take anthing for granted. When the boys are driving me nuts, I try to remember how lucky I am to have them in my life. The boys will never realize that they saved my life... literally. All of those days and weeks after he passed, when I thought about taking too many pills, or driving my car off the road, but I couldn't do it... there was no way I could abandon the boys I have and love. Someday, I will tell the boys how they saved me just by being them, being here, and the love we share. So for his sixth birthday post, I will share a photo of all of my boys. Happy sixth Killian.