Graham's Oncology Visit!

Today we all headed to the hospital with my Mom for two appointments. Parker has his OT appointments on Mondays from 11:00 AM to 12 noon. He has to go for six to eight visits to work on some sensory issues! He is doing great! Then, we ate lunch in the cafeteria! The children all had a blast eating lunch together at the hospital. Who would have thought eating in the hospital cafeteria could be so exciting? My Mom took Sophia and Parker to play on the playground while Graham and Piper headed with me to see Dr. Griffin. We waited awhile to see Dr. Griffin. Everything looked good with his bloodwork and CT scan. We have to continue to have Graham's AFP level checked each month and we have to schedule a CT scan for October. This will allow us to be sure the cancer is staying away! The children fell asleep on the way home and were exhausted for the rest of the night! We are looking forward to a quiet day at home tomorrow!

A Budding Photographer!

Any guesses as to who took my camera and took lots of pictures? No wonder I have to keep charging the battery!

Piper Loves her Bike!

Piper really loves riding her little bike. It is amazing how much she has grown in the short time she has been with us. When she first came home, she couldn't move the bike with her legs and we had to push her. This week she finally has enough strength in her legs to move her little bike! We are so proud of her!

Sophia's Sidekick!

Sophia and Piper have such a special relationship! Piper really looks up to Sophia and loves to be around her all the time! Graham and Parker love and take care of Piper too, but there is just something special between Sophia and Piper!

Heart Information!

Dupont has a website that explains all of the possible congenital heart defects. Here is information on three of Piper's heart conditions from the hospital website. Piper's biggest heart defect is a double outlet right ventricle. That means both her aorta and pulmonary arteries are coming out of her right ventricle! I am sure this is more information then you ever wanted to know about heart, but I want to document everything about Piper's heart conditions!

Coarctation of Aorta

The aorta is the main artery that sends oxygen-rich blood from the heart to the body. Coarctation refers to a narrowing of the aorta, usually found in the descending aorta, which hinders blood flow to the lower half of the body. This forces the left ventricle to work harder to pump blood past the constriction. This leads to an increase in pressure in the left ventricle causing hypertrophy (enlargement) of the ventricle.

Patent Ductus Arteriosus (PDA)

The ductus arteriosus is a normal connection in utero between the pulmonary artery and the aorta. Since the lungs are still developing, the baby receives oxygenated blood from the mother during pregnancy. The ductus arteriosus allows the greater part of the oxygenated blood to bypass the non-aerated lungs by flowing directly from the pulmonary artery to the aorta. After the baby is born and begins breathing, hormonal changes occur causing the ductus arteriosus to close. A patent ductus arteriosus, or PDA, is when this connection does not close as it normally should. If the ductus remains open, the direction of flow reverses and some of the oxygen-rich blood from the aorta flows to the pulmonary artery and into the lungs. This may cause an excessive amount of blood flow to the lungs.

Ventricular Septal Defects (VSD)

Simple ventricular septal defects are the most common form of congenital heart disease. A Ventricular Septal Defect is a hole in the wall between the right and left ventricles (ventricular septum). A VSD can potentially cause a shunting of blood from the left ventricle to the right ventricle or from the right ventricle to the left ventricle. The position and size of the VSD determine the physiology and, in turn, dictate the timing of intervention.

Piper Update #3

Piper is resting comfortably. She needs to be still for four to five hours after her procedure. She is sleeping now! We spoke with Dr. Radtke who did Piper's catherization today. We found out that the coarctation that was "done" in China needs to be addressed here. The arch is small and will need to be widened. Her PDA that was also reported to be corrected in China was not really corrected at all and is open and large. That will also need to be corrected during her heart surgery. It is causing a large flow to her lungs. The pulmonary banding that was also done in China is not helping because it is above her PDA. As we knew from her other heart testing, her heart has lots to do and is working very hard. Her lung pressure is high, but we won't have the final numbers from her catherization until Dr. Radtke does his final calculations! Piper will either have one or two open heart surgeries. It will depend on what the heart surgeon decides to in order to fix her heart! Piper is starting on a heart medicine to help remove the excess fluid.

Piper Update #2

Piper is doing great! They are taking pictures of her heart now! Hopefully, that means we will be holding her soon!

Piper Update #1

The nurse just came out to say Piper is now asleep and they are putting in her line to do her catherization now. She was crying when they took her from us. The nurse said that was a good thing because when Piper was crying she was able to breathe in the gas and go right to sleep. They put in her IV and other line after she was asleep. She shouldn't feel anything. Let's hope she wakes up okay!

Piper's Catherization!

Today is Piper's catherization! We arrived at the hospital at 9:30 AM and she was taken back for her catherization around 11:00 AM. We were told she would be gone between two and three hours. Most of the time is actually getting her to sleep and waking her up. The procedure is not really that long. The catherization is a diagnostic test before her heart surgery. I will post updates when we receive any word on how she is doing!

Graham's CT Scan!

Today Graham and I headed to the hospital to have his CT scan and bloodwork drawn to check to see if his cancer has stayed away. G-man was such a trooper. I explained everything that was going to happen before we went to bed last night. He knew exactly what to expect and did a great job. He was so good that even all the nurses and doctor commented on what a great job he did today! Graham's AFP level was 2.6 today which is a great sign that the cancer is gone! YEAH! His level dropped again from his last blood test before we left for China!

P.S. I know I haven't been posting a lot lately, but we left our camera battery charger in China. I haven't been able to take lots of pictures of all the fun things we have been doing. I have to order another battery charger!

Cow Appreciation Day!

Tonight we went to Chick-fil-A for dinner. It was Cow Appreciation Day and if you dressed up like a cow you got a free entree! Since Chick-fil-A is one of our children's favorite places to eat, I couldn't resist dressing everyone up like a cow for dinner tonight! We had a great time!

One Month Ago!

One month ago on, June 7th, we met our precious Piper! She was so scared and we were so worried about her! We were immediately in love with our new daughter! We will never forget those sad eyes and all the tears Piper cried that day! Our hearts were broken as we watched her grieve the loss of the only person who took care of her! We love you Piper Olivia (or Pipes as Parker calls you)! We are so glad you are our daughter and little sister! You are such a special little girl and we can't imagine our family without you!

(Pictures taken by our travel mate and professional photographer Nicole Chyrst) Thanks so much for the beautiful pictures of Piper!

Piper's Upper GI Study!

Piper had her upper GI study done at the hospital. I was not able to be in the room with her while the test was being done because of the radiation from the x-ray. Erik had to do this one all alone! Piper was not a happy camper! Erik said he had to hold her down on her legs and the technician had to hold her head and inject barium into her mouth while she was laying flat on the table! Erik said he was very worried about Piper because she turned blue because she was crying so hard! I was sitting outside the room and down the hall a little bit and I could hear her crying. It was hard to not be there to comfort her!

We were fortunate to also have a speech and language pathologist observe the study. She was able to provide her insight into our concerns with Piper. The initial results of the upper GI study were that her anatomy is all working fine and there are no holes present. We were happy to hear that news. However, she does have some reflux. After speaking with the speech and langauge pathologist, she told us it is not uncommon for children with heart defects to have swallowing issues. She said there is not scientific data to correlate the two together, but it is a common occurance. We also found out that Piper has a large blood vessel in her heart that is pushing up against her esophagus. It is not constricting it, but is is pushing up against it. This may be causing the issues we see when Piper is eating or drinking. The speech and lanaguage pathologist suggested that we have a swallowing test done after Piper's heart is surgically corrected. She works with the inpatients and will happily do the test for Piper while she is recovering from her heart surgery. We are hoping that once Piper's heart is fixed that she will have better success with eating and drinking.

We also had to have Piper give blood for all the tests that our pediatrician ordered for children who are internationally adopted. This was another traumatic event for Piper. They couldn't get her blood drawn with the first stick. They had to try again and they were able to get some blood, but her blood was so slow moving we thought they would never be done collecting her blood. They had to stick her one last time to finsh getting all the blood they needed. It was so hard to watch her be so upset again!

We took Piper to lunch at Chick-fil-A after her upper GI study was over!