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Malachi’s Heart

17 Mar

We had our first appointment with his cardiologist yesterday. We received good news and bad news. We are going to pray for better news once they do the cath next week. We brought Josiah with us to the appointment. Neither of us were ready to be separated from each other after 2 weeks apart. He did ok for a 2 year old at a 2.5 hour appointment. I am not used to how much 2 boys eat and I did not bring enough snacks and drinks. Luckily, their office had some goldfish and bottled water for the boys. Here are some pics of them together. I got out the lollipops at one point too. Josiah still isn’t sure if he likes them.

We were late to our appointment because having 2 boys is a lot harder than 1. I am going to have to start planning better. The appointment was at 11 and we didn’t leave until 1:45. She literally talked with us for over 2 hours on what Malachi’s heart looks like, how it is functioning, why he’s a miracle and why we need to start fixing it sooner than later. Josiah’s nap time is usually 1 so he was starting to crash but overall I think they both did well.

The cardiologist drew us a picture of a healthy heart and Malachi’s heart next to it. The good news is that he has 2 fully formed ventricles and 2 fully formed atria. What we’ve been calling TGA is true, the aorta is where the pulmonary artery would be but there is no pulmonary artery (it never formed). He has pulmonary atresia. He will need a unifocalization procedure on his major arterial pulmonary collateral arteries (MAPCAs) as well as a shunt. The blood flow that would go through the pulmonary artery has been handled instead by collateral arteries. These are smaller and there are many of them. Because of this he would not be a candidate for a heart transplant. 😔 While I never want him to have to go through a transplant it is hard to hear that he wouldn’t even have the option if ever needed.

The next step is for him to have a catheterization next Friday. We meet with the doctor on Thursday to discuss the cath and then he will have it done at 9am Friday. He will need to spend the night and we will go home the next day. This cath will tell the doctor’s hemodynamics (pressures and flows) which will help determine future surgeries.

When we arrived home yesterday he clapped and cheered when he saw our house. I think he is still unsure what “home” is. He sure was happy to be back.

Our Miracle Boy

15 Mar

After 2 flights and one layover of Malachi vomiting up all fluids and solids we decided we needed to take him straight to Vanderbilt Children’s Hospital when we landed. We assumed that this was all a result of motion sickness. He’s been in an orphanage for 6 years. He hasn’t traveled in a vehicle much let alone an airplane. We tried one more time on the way from the airport to see if he could keep water down. He couldn’t so we brought him in. He was so weak.

We checked him in and they brought us to a room within 5 minutes. It was a very warm room since he does better with his oxygen sat when he’s warm. When talking to the staff initially we told them that he has transposition of the greater arteries (TGA), VSD, DORV and PS and that it is unrepaired (he’s never had surgery). They would ask, “he had an initial surgery though.” Nope, he’s 6. No surgeries ever. They told us it was a miracle he was still alive. Yes, we know. God has been with this boy. He has a plan for his life.

Then, about 10 people surrounded us. They were so curious to see this amazing kid. Malachi is so strong. He can’t speak the language. He doesn’t know where he is. We can’t tell him what is happening without using an interpreter over the phone. Yesterday was hard. He is the most compliant child. All the doctors have commented. You can see the internal struggle on his face when he is worried about what is going on. When he knows they are going to take blood he whines a little and tears start dripping from his eyes but he never really shows out or anything. It is pitiful to watch because I know he’s trying to be strong.

Getting another X-ray:

They took him for a CT scan yesterday. I went with him and wore a vest so I could be in there with him. Kev and I are all he knows right now and I want to make sure he knows at least one face as he’s looking around. He was frightened of the CT machine. He whined and has tears falling. But he was so strong. I held an iPad so he could watch a video in Mandarin (something familiar) during the CT. To hold his hand and tell him Mama is with him and he’s so brave and it won’t hurt is so crazy. This poor boy didn’t even understand what a mama was 14 days ago. I’ve only been his Mama for 13 days and I’m hoping that this bond we have after this short time will provide some comfort to him. I can’t imagine what he is thinking and how scary it is. He’s had multiple x-rays, a CT, IV, an echo and an EKG. He’s been on oxygen and is back off it now.

As far as his dehydration, he is so much better. He is his happy and smiling self again. They brought him some play dough and puzzles to play with.

What we’ve found out so far about his heart condition: he has TGA, VSD, DORV and Pulmonary Atresia not pulmonary Stenosis. Due to the PA we may not have the surgical option we were hoping for and we aren’t sure at this point if he has many options at all. 😢 We will know more after his catheterization next week. They will also be sending his records to a doctor at Stanford and to Boston Childrens. We’d like to ask for prayer that God will allow him to have surgery options and that he will be able to play and walk around normal without breathing and oxygen issues. That God will bless him and he will have a long life and not a shortened life due to his heart. I am having a hard time worrying about him and that he may not be able to run around one day or have s long life. As his mama, I want so much for him.

Well, that is all the update we have for now. I’m about to get a translator on the phone to let him know we will be going home soon. 😀

Traveling back to the US

14 Mar

At 9pm we rode to the airport. Our wonderful guide got us a driver and she came along with us. When we got to the airport she helped us to our airline check in so that we could check our bags. All 4 bags were under 50lbs. Yay!! One was like .8 over but they didn’t charge us. She spoke to the guy at the check in desk for us. Explained our situation and that we needed to sit together. He had no space for 3. He put 1 of us with Malachi and the other 6 rows back. We were going to have to ask if someone would move for us. It was very unlikely since Kev had a middle seat and he would have to exchange for someone with an end seat. 😢

We were at the airport gate and an American woman started talking with us. She lives outside the US right now and was flying home for a wedding. We were telling her we didn’t have seats together and she said she would pray that someone will move so we can sit together. Then they called for special boarding. Unfortunately, we had to go outside the gate, get on a bus (which meant lifting the stroller onto the bus and in other cases a wheelchair…no ramp). They drove us out to the plane and we had to carry Malachi up all the steps to board the plane. I was upset that he was seeing the huge plane. I thought he might get scared but he seemed excited. Always a smile. He was moving his arms out like an airplane and screaming something in Chinese. 😊

We took our seats. I sat next to Malachi and a Kev sat 6 rows back. Then we waited to see who would be sitting with us while I prayed silently that the person would want Kevs middle seat. I was helping Malachi with something and heard someone say, in English, “Are you ready for a blessing from the Lord?” The seat belonged to the woman we spoke to st the gate. Tears started streaming down my face. She said she wanted to take Kevs seat. God is amazing. Kev and I were both in tears to see God work this out for us.

The rest of the flight was pretty uneventful except for the 5 times that Malachi threw up. Being at the orphanage for 6 years didn’t give him much time in a vehicle or plane. So he seems to get motion sick very easily. He threw up all over himself and me while Kevan and I tried to hurry and find something to help. Fortunately, I had 2 extra outfits for him. Unfortunately, for me….I didn’t. Lol. I’m looking forward to a shower and change of clothes. We have 1 more flight to go. Please pray no more vomiting! He has pretty much laid between us the rest of the flight. Sleeping or just laying. He still smiles every now and then. He is so sweet. He has not eaten except for a lollipop. The water has had he has thrown up. Prayers that we can get him hydrated too. Any advice on helping cover kids who vomit in cars or any suggestions that might help would be great. We have many car rides the next few days to Nashville and back.

Consulate Day

12 Mar

Today we had our appointment at the US Consulate. It took about 2 hours but Malachi was great. There was a little play area for kids but until it cleared out some he didn’t want to play. He warmed up to it when there were only a couple kids left. We were not aloud to bring our phones or cameras so we couldn’t take any pics. They are expediting his visa so we should be able to get it tomorrow and we start to travel back home tomorrow night. Here is a pic that our guide took before we went in.

We went to Shamian Island today to site see and shop. We bought the family some traditional Chinese outfits, ate some American food at Lucy’s (it didn’t taste as good as American but it helped with the burger craving) and we walked around a lot. I’m exhausted. The Pearl River surrounds the island. Here is a pic of Kev and I. It was difficult to get Malachi in at the time as he was in the stroller watching boats.

We had 2 drop in oxygen episodes with Malachi today. The first time I took him into Starbucks to change him. The bathroom was freezing and his temp dropped too fast which makes his oxygen fall. He couldn’t stop coughing and his teeth were chattering so bad. I had to carry him back out to the stroller. I was afraid to let him walk he was so blue. The second time he was playing with bubbles that Kevan was blowing for him. It was sad to see that what kids would think is just normal play for them his little body could hardly handle. He got so blue and was coughing so bad I made him come back and sit in the stroller. Poor little guy. I checked his oxygen after we got him settled and sitting still and it was 45. Probably lower though since it took us awhile to get him settled.

There were a lot of people taking pictures. When I first saw this guy I thought he was a mannequin but quickly realized he was s model.

All over Guangzhou we see men and women sweeping with these brooms.

Pretty scenery.

Adoption Feedback Errors

11 Mar

Before we decided to go forward with Malachi’s adoption we spoke to several parents of China adoptees. Some had very negative things to say and we almost let it sway our decisions, but we could tell when speaking to them that they just had a negative personality. We prayed a lot and asked God for wisdom and the positive feedback from other adoptive parents outweighed the few negative folks and we also felt like God wanted us to be his parents.

Here are some of the negatives and how it has panned out so far:

  • He won’t be able to eat with a fork. Orphanage kids only eat with their hands. Result: Malachi eats with utensils and chopsticks better than most adults. He doesn’t like messes either. He wants me to wipe his face, the table when it has crumbs or his pants if he misses his mouth. Unfortunately they don’t give out napkins here in China though so we have to remember to bring them with us.
  • He only eats food at room temperature so he won’t like hot soup or ice cream. Result: He loves hot soup and ice cream.
  • He won’t know how to brush his teeth and probably never has. Result: as soon as we handed him his toothbrush he knew exactly what to do. He did think it was funny for all of us to brush our teeth together. Also, it is a battery operated toothbrush and he loves it. He’s actually excited to brush his teeth. Happiest kid in the world.
  • He will probably be scared of water since he’s never had a bath. Result: the highlight of this kids day is bath time. He loves it. Now, he does not like the sound of the drain. It does scare him but I just wait and do the drain once he’s out.
  • He will probably still be in diapers. Result: unfortunately this one is more true. He does know how to use the toilet but he does not let you know when he needs to go. You have to take him every hour and a lot of times you don’t get the timing right. We’ve been using pull ups during the day and night. We’ve had many blow outs. Many change of clothes due to accidents. 😞 Today, we put him on the toilet and he peed and got down. We washed his hands and put on a clean diaper. By the time we walked to the living room his diaper was dirty! Like not even a full minute. 😱
  • China is no fun. It is a hassle and everyone is rude. Result: we’ve had a lot of fun here. Most people have been really nice. There were a few times we saw loud yelling at stores but no one has been particularly rude to us. Most people are helpful. Now, the Chinese do not honor personal space. They will cut in front of you or knock you when walking by but I don’t think they perceive this as rude like we would in the US. The only rough part has been finding good food and trying to understand the menus. Today I ordered chicken fried rice and got fried chicken with white rice on the side. Lol

Take what some people say with a grain of salt. Now, he did spend 6 years of his life in an orphanage but they took great care of him. I’m very thankful for all they’ve done for him. I’m sure he will have some delays and emotions from being there so long but God will help us along the way.

End of Day 4

8 Mar

Thank you all for your prayers. The transition has gone so well so far.

We didn’t do much today since Malachi wasn’t feeling well. We stayed around the hotel. Took him to the medical clinic on the 5th floor and we were very impressed with the care we received. The receptionist thanked us over and over for adopting Malachi. It was so sweet. Malachi cried a bit when they took blood but he did great. The doctor knew English well and he also was sweet to Malachi and was asking him things in Chinese. He asked him if he gave him liquid medicine would he drink it so that he wouldn’t get a shot. He immediately agreed that he would. Malachi has a upper respiratory infection. They gave him some powdered meds that mix with water. He gagged a little but did good taking it. He climbed up in my lap and put his head on me. So sweet.

He’s holding a car he got in his McDonalds happy meal yesterday. The headlights light up. Kevan got us pizza for lunch but he is not a fan of pizza. He ate the stuff off the top but didn’t want the bread part. It’s too bad since Josiah loves pizza. Also, their Pizza Hut pizza is better here than in the US.

Some interesting things I’ve noticed in China:

  • Our hotel room door has a doorbell. They ring it when they come to clean the room. Malachi slept right through it while napping and it is pretty loud.
  • Women wear nylons here
  • A lot of people smoke here. Drives me crazy.
  • At the med clinic today they had him stand on a scale and it automatically calculated his height too. 101cm
  • It cost us about $120 for the doctor visit today. It included his blood draw and the hotel covered the medicine fee since we are guests.
  • Minivans here have curtains on the windows.
  • When you have a 6 year old that still has dirty diapers…febreeze is your best friend. 🤢
  • There are a lot of people in the US awake in the middle of the night that should be sleeping. Lol. So many FB comments in the middle of the night.
  • It is very hard to find chicken fried rice in China. Lots of noodles and hot pots.

We had a very hard time finding something to eat tonight. Most of the Chinese menus do not have many pics and even with translate apps it is hard to figure out what stuff is. We just ordered room service. 😔Tonight we were invited to a meet and greet with other adopted families. So, we will be leaving soon. Here are some pics of the day.

Day 4

8 Mar

Malachi woke up at 4am crying this morning. It was just a sniffle cry not a loud cry. He was sitting up in bed so we turned the light on and loved on him, then brought him into our bed. I don’t know if he had a bad dream or was just scared since it was so dark. He laid right down between us and closed his eyes. I gave him kisses. He never fell back to sleep and he was a little freaked out to see his daddy with a crap mask on. Lol! So, we all got up at about 4:45am. At about 6 I realized he had a fever. It was 100.1. We are going to take him to the medical clinic in the hotel once they open at 9. Please pray that he is not seriously sick (no pneumonia) and that we can get his fever down so when they do his medical appointment on Saturday he does not have a fever.

He ate breakfast really good this morning. Noodles and congee (rice pudding) are his favorite. He also likes watermelon and bread items. He absolutely loves all things candy and junk food related. Lol

He is becoming a lot more hyper. Very talkative even though we have no idea what he is saying. We are trying to keep him calm so he doesn’t have a drop in oxygen but he sure likes to play hard and gets all out of breath. Also, several people have private messaged us wondering if Malachi might have TB. You can all rest assure that he does not have it. He was tested last week and we found out on Monday that he is negative for TB. Praise God! Due to his heart condition it was caused some lunch issues. So, we are guessing that is why he is having some lung symptoms too. We have let him play too hard. We are going to start being more calm with him and let him watch TV and play on the tablet more.

Thank you for all your prayers. We are being expedited home sooner and should land in the US on Wednesday morning. We may have to take him directly to Vanderbilt Children’s ER when we get home. We feel bad for him going straight to the hospital, but the Vandy doctors are in communication with us on what to do when we land in the US. We will know more once we see the doctor today.

This boy loves his noodles. This is breakfast today.

After the Orphanage Visit

7 Mar

We were given the note and translation today from Malachi’s parents. It is very sweet. They confirmed his birth date and the time he was born. I am so happy for him that he will always know his real birth date. They also told us their nickname for him and that due to financial reasons they needed to let him go. They hope that he will be adopted. There was a little more but it was pretty short. We know they loved him but his heart condition was too much for them financially. Here is a baby pic of him.

We also found out that the doctor that first saw him after they found him was the one that named him. He was named after a Taiwanese actor. 😀

Malachi has really come out of his shell today. He has been talking a lot (we have no idea what he is saying since it is Chinese) and he’s been pretty loud (like his little brother lol). We have had to tell him no a few times today. He is starting to get into things or throw things. He tends to laugh every time and doesn’t seem to care that we’ve said no (just like his brother). We will have our hands full with these 2 boys.

I can’t wait to look back 6 months from now and see how far he’s come.

I’d like to ask for some additional prayer specifically for my health. I have a very sore throat, chest pain and sinus stuff. I’m not feeling well at all. Please ask our father to help me feel better tomorrow.

We went out to an Irish Pub tonight for dinner. I don’t think Malachi loves it but he did eat ok.

A Hard Day

7 Mar

Malachi coughed quite a bit last night and it sounded very liquidy a few times. When we got up and turned the lights on there were a few blood spots on his covers and pillow. He seemed to really struggle this morning with breathing. We haven’t let him walk much on his own today. We’ve stroller-ed him.

Before we went to the orphanage we asked our guide if it might be too emotional for Malachi. Kevan was going to stay back with him, if needed, and let me go. She said she didn’t think so because he is so happy with us and that it would be good for him to say goodbye. We had her ask him if he wanted to go and he said yes. We took s minivan and there were two seats in the back and 3 seats in the way back. We wanted Malachi to have a seatbelt so we moved to the way back so we would all have belts. The ride to the orphanage was about 45 minutes. About 5 minutes from the orphanage Malachi started throwing up. It was all over his clothes (I forgot to bring an extra outfit). Our guide had a small ziploc bag. I don’t know what we would’ve done without it. She thought he got car sick. 😕

When we made it to the orphanage Malachi started crying. This was the first time we’ve seen him cry. The guide said he was embarrassed that he threw up and he thought we might be mad at him or maybe not want him. She reassured him that everything was just fine and we were not mad at all.

alked around some of the grounds and then she had them take us to the building he lived in. It was all very clean and organized. They showed us the room he was in when he first arrived. It was pretty loud. Little babies all over the room playing. One of the nannies came running for him. She came out, loved on him and asked if she could take our picture. We took a picture with her as well. You could tell she loved him very much.

We saw his classroom and met his friends and his bedroom mates. They told him to say goodbye and he became very emotional. He cried very hard. It was so sad. They took me to see his bedroom while Kevan and him stayed back. They thought it may be too emotional for him since he had already cried. The bed that is sideways was his bed. There were 9 beds in the room.

e is where he ate his meals each day and pic of a meal they were having. Chicken, rice and cooked egg yolk on top.

an was given a new outfit to change him into. Then, we started to go back to where the minivan was waiting. We started to go into a building to give our donation and sign papers and he started to cry heavily. The guide told us that he thought we were giving him back. It was so sad. She reassured that we were not. When we got back to the hotel he cheered. We think he thinks we live here. Lol

Here are a few more pics of the orphanage. I'm not posting any of the nannies or kids but I will put them in his keepsake album.

Day 3 Plans

7 Mar

Today is our 3rd day with our Malachi. We will be heading to the orphanage to see where he’s been living the last 6 years of his life. We will get to meet his nannies that have cared for him and loved him. We also have a few more questions so it is nice we will get to ask in person. Malachi will also get to say his goodbyes. It may be an emotional day for him. The guide will also take us to his “finding spot” where he was left almost 6 years ago to the date. He was estimated to be about 7 months old and he did have a note with him. We are waiting for our guide to translate the note for us. The guide will speak in English so he won’t know why we are there but I will be able to fill in some of his story when he is old enough and asking questions. A story of God’s amazing providence. His middle name will be Joseph so we can tell him the amazing story of Joseph in the Bible and how God makes something that seems so horrible such a beautiful story. God has had a plan for Malachi’s life from before he was ever born. We are blessed to be his parents and see God glorified through it.

Malachi still sleeps with a diaper. Since he was still in a crib type bed he couldn’t get up to use the restroom. Last night he had an explosive dirty diaper. This was our first experience as parents with such a mess. Josiah hasn’t had one yet. I almost threw up getting him cleaned up. Kevan watched from afar and kept telling me how much he loved me and what a great mom I was. Haha!!! 😂😂😂 He also “assumed the position” for me to clean him up. It was quite funny but I may have lost my appetite for breakfast.

We will be leaving soon. Here are a few pictures from breakfast. This boy can eat! Between him and Josiah, Kev and I will be broke when they become teenagers. Lol