Wednesday, March 31, 2010

The hospital visit

We arrived at 7am sharp. Knowing that Daniel was hungry and thirsty, the nurses gave him some juice, since he was slated to be the second procedure of the day. Shortly thereafter, we heard rumblings that someone didn't show up and Daniel could go first. Unfortunately, he had already consumed the apple juice and now had to wait four hours---grrrrr. We weren't real happy about that, nor was the Director of Catheterization! Finally at about 12:30, they proceeded with IV, which Daddy was present for. Thankfully, Madi and I weren't there to witness that mess. I guess they had a problem finding his little veins. When they came back, it was clear that Daniel's sweet little face was in tears. Daddy was on the verge too. About half an hour later, the anesthesiologists came to sedate Daniel and take him to the cath lab. He was happy that they allowed him to be in control and administer his own anesthesia! A few minutes later, it was apparent that his little world was spinning.

Two hours later, after many trips to the vending machines (Madi's favorite part of a hospital visit), we were brought the good news from Dr. Sandhu herself. Daniel did great and they were very optimistic about his pulmonary system. He has two very strong arteries and only two collateral vessels had formed. One of them, on the left, was what they originally thought was an open PDA. It is not. The PDA is closed. This collateral vessel is what is getting oxygen to his lungs! There was another small vessel on the right side, but it had narrowed quite a bit and wasn't functioning effectively so they closed it off. Daniel's case will be discussed at the catheter conference and we should know soon how and when they will proceed with surgery.

It took a while to calm Daniel down after the procedure. Thankfully, we had been warned by several people about kids and anesthesia so we were prepared. By the time they released him from the recovery room, it was after 6pm and they wanted us to stay for the night to observe him. We settled into our room after 7pm. Daddy took Madi home, and I stayed with Daniel. It was a long night of little sleep. It seemed like he would just get to sleep and someone would come in to take his vitals or poke him! It was frustrating, but the hospital was the best place to be to make sure Daniel was recovering okay. The next day we woke up at about 5am and we were discharged at 10:00 after he was checked out and given a good report. Daddy came to pick us up and we both passed out on the way home!

Daniel was fabulous. Fabulous and resilient. Madi was pretty brave herself. What she witnessed watching her little brother come out of anesthesia was pretty brutal, but she handled it amazingly well. It appears as though she has a new appreciation and level of protection for him. He is an unbelievably strong little boy.

Here we are at the hospital!

Thank goodness for apple juice!
Patience is a virtue...

Paging Dr. Daniel
Finally at 12:30! Administering his own anesthesia!

It was a rough ride, but I'm smiling again!
I think I'm going home today!

Monday, March 29, 2010

"he has a strong pulmonary system"

Just a quick update for all those waiting for status on Daniel. The cath procedure was completed this afternoon and Daniel is recovering fine. Since the procedure was later than they thought, they decided to keep Daniel in the hospital overnight. Lisa is with Daniel and Jimmy and Madi come back home. The whole family should be back home tomorrow morning.

Unsurprisingly to those of us who have been watching Daniel (either in person or remotely), his pulmonary system is quite strong. The actual corrective surgery can and will probably happen quite quickly now.

Daniel and Lisa know that we are all praying for them.

Sunday, March 28, 2010

In Miami

Madi woke up this morning saying, "Gradulations Daniel! You're going for your heart surgery!" Despite a few sibling ups and downs, the kids were great travel companions today. On the drive to Miami, Daniel dropped his toy too far out of reach for any of us to retrieve. After a few moments, Madi handed him her toy and said, "Today is all about you, Daniel, MY little brother."

We arrived at the SpringHill Suites in Miami at around 4pm today. It was enough time to settle into our room and head down to the hotel restaurant for a quick bite at 5pm. It is 8pm now, and we happily report that the little ones have been asleep for about 20 minutes. It was a little tricky getting them down as they were excited and obviously a little out of sorts with their surroundings.

Our alarm is set for 5:30 and we will head to Holtz Children's Hospital at 6:30. Since Daniel is not allowed food or drink after midnight, we will all refrain from food or drink until he's admitted to the cath lab at 7am. The procedure is supposed to take 2 - 3 hours. If everything is what they predict, we should be home sometime tomorrow once the anesthesia wears off. We have faith that Daniel will be fine, but I must admit that we are all a little scared--not so much for the procedure as much as we are for him not knowing what is going on. We just don't want him to be scared. We will post as soon as we can with the findings.

Thursday, March 25, 2010

Rescheduled for Monday...

Daniel had a little bit of a cough this week. It didn't seem serious, but it crossed my mind to contact the Cardiologist. They decided that they would rather wait until Monday to make sure Daniel isn't coming down with something.

We were disappointed at first, but we do believe that things happen for a reason. Our trip to Miami on Sunday can be a bit more relaxed, and Madi's on Spring Break so she can still go with us. We'll keep you posted.

Wednesday, March 24, 2010

The Heart Catheter Procedure

Tomorrow night, the four of us will drive down to Miami and check into a hotel near the University of Miami. Daniel's heart catheter procedure is scheduled for 6am on Friday at the Holtz Children's Heart Center at the Miller School of Medicine. The catheter procedure should give them more information about what needs to be done during his surgery. We should be home sometime on Friday, unless they decide to keep him overnight for some reason. Please keep Daniel in your prayers.

Friday, March 19, 2010

Happy Birthday Aunt Gloria!

This week our Aunt Gloria, Bubba's sister, came for a visit. She arrived on her birthday and we had a wonderful birthday celebration that evening. Madi was pretty much glued to her, because "she never gets to spend time with Aunt Gloria". As any princess would, Madi made sure to roll out the red carpet and make her feel welcome in Florida:)

Cast Off!

Daniel's cast came off on Wednesday! His reaction was interesting, almost like he had separation anxiety from it when they took it away. I had never been involved in the removal of a cast before. I can't imagine his thoughts seeing that buzz saw come toward his arm. I kept him calm, and he was actually very, very good while the nurse removed it.

The Doctor gave us strict instructions to keep him in a bubble for the next two weeks while his arm is still "tender". Wow, that task seems impossible. If you know Daniel, you'll agree!! This picture was taken at the doctor's office after his cast was removed, sporting his sister's headband. If she only knew, she would have gone crazy!

Tuesday, March 16, 2010

Half The Sky

When we arrived in China to bring Daniel home, we discovered through Holt that Daniel had spent some time in the care of a wonderful organization called Half the Sky. We knew of them and had even donated to them in the past. To find out that they had cared for our son was heartwarming, to say the least. When we returned home, I contacted Half The Sky to see if they could provide information about Daniel. Today, we received precious information that seems like gold to us. The most amazing thing is that Daniel was taken into their care on September 19th of 2008--Madi's birthday! Here is the information we received:

Hong WeiFeng NAN197 NNAN24 (fall 08)

Hong Wei Feng, who has congenital heart disease, joined our program on September 19th, 2008. He was not afraid of the strangers and new environment. He just stared at me and then looked around the surroundings. I loved this beautiful boy at the first sight. He would smile whenever you amused him. Because he was rather weak, he was not able to sit steadily and he could raise his head for a little period of time when he lay on his back. I have spent twenty days with him. During this period of time, he has received the treatment due to the bad health. When he turned a little better, we would sit and talk together. When I gave his body massage, he would look into my eyes. Then he would give me a sweet smile. How lovely he was.

Now he is able to turn his body around the soft cushion. Moreover, he can sit alone for nearly one minute. When he sees a toy, he will reach out his hands to obtain it. After he gets it, he will have a close look at it. And he will shake it or knock at it. When his toy is taken by other children, he will cry sadly. He likes to play games with me and communicate with me face to face. Look at the photo!, He was listening to me seriously.

Hong WeiFeng NAN197 Winter08

WeiFeng did not make much progress in this quarter. He got fever a few times and coughed.

He knows to ask for food now. When he sees me holding a milk bottle, he will look at me and cry. Then as soon as i feed him, he will smile happily. Sometimes he will grab the bottle from me and hold it himself. He likes to lie on the foam mat, try to grab his little feet with his hands. When i amuse him, he will laugh out happily. He recognizes some of our voices. When he hears my voice, he will look at me and ask for a hug. If i do not take him, he will cry.

He is able to think things over now. For example, when he sees a baby playing xylophone, he imitates her and striking the keyboard and then he hears the sound it makes. He thinks about it for a while and he understands that it this toy can make sound.

When he sees me taking some snacks, he will extend his hands and ask for his share. He is so cute.

Hong Weifeng NAN197 (spring 09)

During this quarter, Weifeng was livelier. He can recognize people. When he sees people he likes, he will stretch out his hands and ask them to hug him. He no longer sits quietly. When he sits, he turns his body left and right to look around. When he sees things in front of him, he will try to move his body forwards to fetch them. When he lies on his stomach, he can push his torso off the ground for a while using his limbs. He can move his body left, right, and back. He can stand for a long time by holding one of my hands. He can switch the toys between his two hands to play. He can eat biscuits on his own. He can take the toys out of the containers. When Weifeng sees the toys he likes not far away from him, he will crawl to them and then pick them up to play with. He is not very strong because of his ailment. He crawls for a while and then takes a break. Weifeng likes playing games with me best. For example, I use the towel to cover his face and then uncover it to knock his head lightly with mine. We play games called ‘clap your hands and touch your nose (you can see it on the photo)’ and ‘touch my head using yours’. He can imitate me by turning his wrist with music. When the music starts, the older children begin to swing left and right to dance. With an air of happiness, Weifeng looks at them excitedly and then begins to swing his body too. Then I stretch out my hands to him and he holds my hands to dance, with smile on his face. How happy is he! We teach him with games . Weifeng has been able to point out his nose and mouth. He can touch his head, clap his hands in welcome and wave goodbye. Weifeng is more attached to me now. When he is happy, he will call me ‘mom, mom’ repeatedly. When he sees me hugging the other children, he will begin to cry loudly to show his unhappiness. Weifeng is a handsome and clever boy. We all like him.

Hong WeiFeng NAN197 Summer09

WeiHong has made great progress in this quarter. He is really active and cute. He can stand up by holding onto something and walk a few steps. He likes to stand by the table and pats on it. He is really good at crawling these days. He crawls around the activity room and looks for the toys or plays with other children.

He is becoming more and more attached to me. When i play with him, he will not let me go or take care of other babies. He wants me to stay with him only or he will cry.

He is smart and outgoing. He calls all the nannies mom and often smiles at them. He always observes our emotion. If someone looks at him with a upset expression, he will cry. Then if you give him a happy smile, he will laugh happily too.

WeiFeng likes new toys a lot. When we receive some new toys, he will always be the first to explore how to play with them.

Hong Weifeng NAN197(fall 09)

In this quarter, Weifeng has started to walk on his own without the help of walls or other things. He also likes to climb. When he plays with the rocking horse, he even stands on the back to swing. When he sees me scared or nervous about what he is doing, he will smile at me. What a mischievous boy! When he sees the other children climb upstairs, he will hold onto the railings to go upstairs and downstairs quickly. Weifeng has made progress in fine movement and he is more careful. He often pays attention to tiny objects. He is always interested in the screws on the mirror, windows, and shelves very much. He can play with them for a long time; he touches them and tries to turn them. Weifeng has better imitating ability now, and he can imitate the adults. For example, he can help me to hold the milk bottle for the younger girls to feed them. He also calls me ‘mom’ on his own initiative. He calls me ‘mom’ before he does anything, and has established an intimate attachment to me. Every morning when he sees me, he will climb into my arms happily and be unwilling to leave me. When he stays with me, he smiles all the time. Once I leave him, he will lie on the ground kicking and crying loudly. He is a smart boy; he can understand the expressions of the adults. He gets close to the people he likes; and smiles at everyone who plays with him. He is a very lovely and handsome boy!

Saturday, March 13, 2010

Festival Fun

Last weekend was the annual St. Vincent Ferrer Spring Festival. It has been a tradition of ours to go every year, and it was pretty special having Daniel there for the first time. He rode his first carousel and ferris wheel (Madi's first time for that too). I must admit that I was pretty terrified, especially seeing his little face peek over the edge when they were up in the sky! (shown in first photo) He had his first taste of cotton candy and threw it to the ground based on appearance. Of course, sister Madi was not happy about an ounce of cotton candy being wasted!

Madi enjoyed playing games though she ended up without a prize this year. She had her face painted. She hung out with Grandpa, pal Sophia, and went through the 'Monkey Maze' about 20 times with buddy Coston Crawley. Her favorite event, however, was riding the Tornado and the Himalaya with all-time favorite playmate, Daddy.

Friday, March 12, 2010

A Visit from Leo

We had a nice visit over the weekend with Madi and Daniel's cousin, Leo, and parents Aunt Dasha and Uncle Ed. Daniel loved hanging out with Madi and Leo and trying to keep up with them. On Monday, we took a ride to the Wakodohatchee Wetlands to spot alligators and other wildlife. We saw 4 alligators! We followed that up by a trip to the Strawberry Patch to pick strawberries and see the animals and birds. It is impossible to get Madi and Leo to look at the camera at the same time, but I managed to get a cute shot of them anyway. Daniel was home napping, so he missed playing with scissors this time!

Thursday, March 11, 2010

Progress in the food department

Daniel has graduated from his high chair. As much as I'd like to keep him captive (ha ha), he indicated, through pointing and various verbal clues, that he wanted to sit in a big chair like the rest of us. So far, so good with one exception--he fell off the chair and landed on his side the other night. Poor little guy is so reckless. We have continued to indulge his "big boy" desires, but we're watching him a bit more closely. I think a booster seat may be in his near future!

Daniel has refused most of the foods that we've offered to him. He won't even try a bite of some things, and it's frustrating because we know he would love some of them! Yesterday seems to have been a turning point. He tried four new things without disappointment, so maybe he'll trust our offers a bit more.

--Whipped cream on his finger (big score)
--Strawberry smoothie (a little tart for his liking)
--A Juice Plus Complete chocolate, peanut butter and rice krispie ball
--Cheese tortellini (after Daddy had to practically shove them in his mouth)

This morning the trend continued. I put a nutri-grain waffle in front of him (and Madi), and he ate the whole thing! Nothing satisfies a mother like seeing your child eat well (at least this mother:)

Happy Birthday to Ami Mei!

Last weekend, we celebrated the birthday of our beloved mei mei, Ami Mei Piper. It was Daniel's first official birthday party in the U.S. Madi loved showing off her little brother to everyone. He loved playing with all the kids and sitting at the "big kid's table" to eat snacks and cake and celebrate. He also, of course, loved receiving his first goodie bag!

Saturday, March 6, 2010

Chinese School

When our social worker came to visit recently, Madi discovered that we have a list of words in Chinese to use for basic communication with Daniel. We had not been using the list but realized that it may be a good idea to try. Madi was adamant about reviewing the list all morning, and I remembered that some of the Mei Mei's started taking Chinese lessons while we were away in China. We got more information about the classes and started on Thursday! While driving to the school, I asked Madi why she wanted to learn Chinese. She replied, "So I will know what Daniel is I know what he needs..." What a nurturing little soul she is.

Thursday, March 4, 2010


I started taking Daniel to a Mommy & Me class at the YMCA. His favorite part is definitely bubble time. He is completely fascinated by them. He will pursue a bubble until he catches it on his finger and then he just stares at it and studies it. Shortly thereafter, he tries to eat it!

Tuesday, March 2, 2010

A Page from Daniel's Hug-A-Bible

God saves Daniel in the lions' den

Who heard Daniel when he prayed?
Who helped him not to be afraid?
Who stayed beside him in that den?
Who brought him safely out again?
It's God who kept him in his care.
He'll keep you, too--no matter where!