Catch-up/Medical Update

Here’s a long overdue update and photos from this spring.

Phoebe and Titus–sometimes Phoebe is Titus’ favorite dog and sometimes it’s Molly

Rachel has gotten used to the dogs. She likes them best when they are lying down being still. Molly who is now humongous still scares her sometimes. Phoebe’s getting lots of attention from Rachel & Titus.

I finally managed to get my Easter stuff down from the attic the Wednesday before Easter. Caleb showed Rachel how to hide Easter eggs and hunt for them in the living room. Then Rachel wanted to hide the eggs for Caleb to find. She hid them in the exact same spots he did. Rachel kept saying “Again, again.” They took turns hiding eggs until Caleb finally said he was tired of it.

Eli decided that he was too old to hunt eggs this year, but he still enjoys dyeing eggs.

Caleb

Rachel’s first time to dye Easter eggs

Titus

Rachel on Easter morning

Most of my mom’s family lives near us. Their two big holidays are Thanksgiving and Easter. My Aunt Nancy kindly lets us gather at her home to celebrate. Here are photos of Rachel and Titus hunting Easter eggs.

Rachel enjoying some girl time with some third cousins.

Now for what has been occupying much of our time the past couple of months…BASEBALL! Here’s, Caleb, my future star. He’s amazing to watch!

This was Titus’ first year to play t-ball, and he has absolutely LOVED every minute of it! It’s so much fun to watch him mimic his big brother’s moves!

I love this one!

Now some hospital photos. Rachel climbing on a sleepy Daddy. “Why did we have to be here so early?”

Playing while we wait

Rachel cuddling with Mommy

Post-heart cath:  A groggy girl having her first ever popsicle! Now she asks all day long, “Can I have a popsicle?”

“Finally, my kind of food!”

There’s that sweet smile!

This is just a photo I snapped one day when Rachel, Caleb, and Titus were playing cowboys. “Let’s see, I have my pirate hat, my gun, and my sparkly Christmas purse.”

Even though this one didn’t turn out great, I love it! Titus and Rachel are either driving each other nuts or are like two peas in a pod. Here they are lying in Rachel’s bed under a princes blanket while Rachel watches Titus play gameboy.

We scheduled Rachel’s surgery several weeks ago, but I’m just getting around to posting. The doctors met and decided to continue with what they started in China. So she will have the Fontan procedure. The cardiologist did say that because of her unique anatomy the surgeon will have to use “artistic license” on how he does the Fontan once he gets in and sees exactly how everything looks because according to the cardiologist her “aorta is humongous and right in the middle”. After I got off the phone with the doctor and called Tommy to tell him everything, Tommy said, “Did he really say ‘humongous’? He thought that was funny “medical terminology”.

A few days later the surgeon’s office called, and we scheduled surgery for Tuesday, July 14th. We will have to be at the hospital at noon on the 13th. They are planning to do surgery first thing in the morning. Rachel will be in CICU for two days. Then most likely she will be moved to a room. The nurse said to expect to spend a total of 5-7 days in the hospital.

I greatly appreciate any prayers lifted up during the weeks prior to surgery for us and for the people caring for Rachel and most especially the surgeon. I know that I will probably be a nervous wreck when the time comes, but for now I just feel at peace. I feel like the doctors know what they are doing and that it will all work out fine. More importantly, I know that God is in control.

Soon to come, a birthday post.

Funny for the Day

Working on posting a medical update and photos from the past few weeks. But I couldn’t resist sharing this.

This morning we were reading a book on composting. I read this sentence, “There can also be 10 million bacteria in a spoonful of compost.” Suddenly, Rachel yells, “JUST LIKE ME!” Don’t know where that came from, but the boys and I thought it was hilarious!

It would be great to lift up some prayers for my mom tonight and tomorrow. She’s keeping all four kids tonight while Tommy and I go away to celebrate our 17th anniversary which is tomorrow!

So Ready To Go Home!

Apparently Tommy and Rachel slept pretty good last night, but I kept going between Rachel’s bed and an impossible-to-sleep-in recliner. Tommy is on a hard-as-rock fold-out chair. Surely there is someway to make hospital furniture more comfortable! Especially in the peds area where they know parents will be sleeping. Whoever can come up with some comfortable hospital furniture is my hero!

Erica, I kept thinking of you last night having to spend so many nights here.   I think maybe we should have taken your advice and begged to go home last night. They were still watching her leg since she was bleeding some, and Dr. Law said that was another good reason for us to stay the night even though he didn’t expect to have any problems with it.

Overall though, the rooms here are extremely nice. And the staff is incredible!

Okay, here’s my nursing/teacher side coming out. (If you want to skip the anatomy lesson, go to “two surgery options” below.) The way a normal heart functions there is a vein(superior vena cava) that drains blood from upper body to the right atrium of the heart (one of four chambers of the heart). And there is a vein (inferior vena cava) that drains blood from lower body to the right atrium. Unoxygenated blood goes from the right atrium to the right ventricle where it is pumped to the lungs, receives oxygen, and goes to the left atrium of the heart. Then to the left ventricle where it is pumped throughout the body through the aorta.

As Dr. Law said when he came by last night, Rachel’s anatomy is “uh…interesting”. She was born with holes between her atria (ASD) and holes between her ventricles (VSD). Instead of the veins from upper and lower body carrying unoxygenated blood to the right atrium, they both go to the left atrium. And the aorta comes off of the right ventricle instead of the left ventricle. Interestingly, Tommy and I were discussing last night that if she was not born with ASD and VSD, she would not have survived. Amazing how the body adapts in order to survive! Rachel was also born with patent ductus arteriosis (PDA) where the connection between the aorta and pulmonary artery that normally closes at birth remains open. I think this was another adaptation to help her survive. And, finally, she was born with pulmonary atrsesia where the pathway for blood to go from the heart to the lungs is blocked. Because of her adaptations, her heart pumped out mixed blood (oxygenated blood and unoxygenated blood mix together in her heart and are pumped to body).

In China she had a Glenn procedure. In this surgery, since her vein bringing blood from the upper body to heart was allowing unoxygenated blood to mix with oxygenated blood, they connect this vein (superior vena cava) directly to the pulmonary arteries going to her lungs on each side. Instead of being pumped to her lungs by her heart, the blood bypasses her heart going directly to the lungs through gravity and pressure.

This surgery greatly improved her oxygen levels. When she was found abandoned at age three, her hands, feet, and mouth were blue from lack of oxygen. Right now, her hands and feet are pink most of the time except for occasionally if she gets cold; then they look slightly dusky. She runs and plays most of the time like a normal kid only occasionally getting out of breath climbing stairs or running a lot.

The reason that they need to perform another surgery is because the vein coming from the lower part of her body is still carrying unoxygenated blood to her heart where it mixes with the oxygenated blood before being pumped to her body. So her blood only has 80-85% of the oxygen a normal person has. Dr. Law said that as she grows this would limit her more.

Two surgery options:

Normally, after the Glenn procedure, the next step is called the Fontan where they do the same thing for the lower body that they did for the upper body. They attach the inferior vena cava directly to the pulmonary arteries going to either lung, so that it by-passes the heart. The heart only acts to receive oxygenated blood from the lungs and to pump this blood to the body. Her two ventricles that have a large hole connecting them act as a single ventricle. I’m totally amazed that they can re-route the heart like this!

Second option sounds way more complicated to me. They basically make her heart function the way it’s supposed to. To do this they close the hole between her ventricles (which Dr. Johnson showed us on ultrasound on our first visit back in January–it’s a pretty big hole!). They also detach her aorta from the right ventricle and attach it to the left ventricle where it’s supposed to be. They undo the Glenn she had done, detaching the upper body vein from the pulmonary arteries and redirecting it to flow into the right atrium of the heart. Then they detach the lower body vein from the left atrium of the heart and reattach it to the right atrium where it belongs.Dr. Law said that of course there are risks with each step of this surgery.

The doctors are supposed to meet within the next month to discuss her case. Then they will let us know which option they think is best.

Rachel is now awake and has had breakfast. Our sweet nurse Ms. Roz has already been in to take off all of her cords, bandages, ivs, etc. Rachel is thrilled to be able to move around. We are all ready to go home. Just waiting on the nurse practitioner from the cardiologists office to come by and give discharge orders. And she’s impatiently waiting for me to finish and go play.

its an overnighter

Erica and whoever else is reading, we will be here overnight.  Our 6 hours were up about 9:30PM  The doctor was still here and came by to discuss what he saw.  Kim will blog with all the correct terms on what is going on.  Her pressures were ok.  They will discuss her case in the next month we were told.   So no rush on surgery.   As you would expect keeping her still for 6 hours has been impossible.  Her insision on her leg has bled some but they don’t think it will be a problem.

More to come from Kim

out of recovery

waaaaa!  I’m hungaaaaryyyy!

Translation I guess she’s back to normal.   Not too happy that she can’t pull out her IV or that her pressure bandage can’t come off yet.  The doctor talked to Kim on the phone and they will discuss two possible operations.

More later.  Thanks for the prayers

Tommy

Waiting

Rachel got a little weepy this morning after we ran out of things to do. She couldn’t pay attention long enough to watch tv. We read all of the books we brought several times. We rode around the halls multiple times in the toy car. And the children’s playroom was locked most of the morning. The person who was supposed to open it was off today.

She was hungry and thirsty but couldn’t have anything to eat or drink after midnight last night. Kind of hard to wait that long for a kid whose first words every morning are “I’m hungry,” which she repeats until food is set in front of her and then repeats many, many, many times throughout the day.

She was hungry and sleepy from our early morning and began to cry and say that she wanted to go home. I kept trying to get her to lay down with me and take a nap, but I think she was afraid of falling asleep. She kept asking, “Mama Daddy go where?” Tommy and I kept telling her that we were not going anywhere.

The nurses finally got the code to the playroom, so we played in there for about an hour. Then the nurse brought Rachel her “sleepy medicine,” so we had to go lay in bed. We tried to get her to watch tv and be still, but she was fighting going to sleep. She did get pretty loopy and glassy-eyed. She was still a little nervous when someone came to take her to the surgery area about 12:45. We got to walk with her most of the way and then had to tell her “see you later.” The people here are so great with kids! Guess that’s a good quality if you work with kids all the time. The guy working with Dr. Law told her that Mama and Daddy were going to get her something to eat. Great distraction for my food-obsessed child!

They will call us when Rachel gets to the recovery room, and we can go be with her. It should take 2-4 hours depending on what they find. Then they have to watch her for 6 hours. So we will most likely be spending the night.

Will update more later. Thanks so very much to all who are praying.

at UAB

We are curently still waiting for them to call and tell the nurses to give Rachel her “relaxing” medication. Then we will go with her to the procedure area where they will give her some flavored gas then 2-4 hours later we will be waiting for her in recovery when she wakes up.
There is a very young baby ahead of us and then we are next. We have been here since 6:30 a.m. and hopefully will get to go home today. If not it will be tomorrow. Just thought I would put an update on here.

Medical Update

Been meaning to give an update on Rachel, but it’s hard to find time. We’re trying to finish up the school year plus we’re at the baseball field four nights a week with two playing ball this year, not to mention getting everyone to book club, taekwondo, and youth group activities. It’s busy, but we’re enjoying it!

Mainly posting to let everyone know that we are heading to Birmingham Wednesday night, and Rachel has her heart catheterization Thursday morning. We have to be at UAB at 6:30am. There’s one case before her, so hopefully we will not have to wait too long. We may be home that night but were told to be prepared to spend one night just in case. Of course, we would appreciate prayers for Rachel and those caring for her. She got pretty anxious just going to the doctor to have blood drawn last week, so I’m a little nervous about how she’ll do. I got a Sesame Street video from the library where Big Bird goes to the hospital, and she gets anxious and starts whimpering watching it. I know that she will LOVE having mom and dad’s full attention though with no brothers around to distract us from her highness.

Tommy will have his laptop, so we will try to give an update while we are there.

The Zoo, A Funeral, A Birthday Party

Whew! It’s been a crazy few weeks! I’ve been trying to update the blog once a week, but it’s been nearly impossible to get on the computer much the past few weeks.

On April 25th the six of us went to Memphis to meet up with a dear old nursing school friend of mine and her family. Serena and I have kept in touch over the years through Christmas cards, occasional e-mails and occasional phone calls, but we figured out that it has been nine years since we’ve seen each other. It was so great to get to visit with her, see how her oldest daughter has grown into a beautiful young lady, and to meet her youngest daughter. We both agreed that it felt like we picked up where we left off. We had lunch and then went to the Memphis zoo. The dads were awesome! They took over watching the kiddos so that Serena and I could visit. Thanks, Rick and Tommy! Rachel was excited about the zoo, and she hit it off with Serena’s three-year-old daughter.

Zoo photos (not the greatest, forgot camera battery so these are iphone photos):

Love this photo of Eli! YOU ARE SO COOL!

Rachel watching panda eat bamboo

Titus

Titus, Tommy, and Rachel on the carousel

Rachel and her new friend

Eli and Tommy being silly

We were already planning to spend the night at Tommy’s mom’s about an hour from Memphis and were planning to visit his dad also. But throughout the day we were at the zoo, we kept getting phone calls that his dad was in the hospital and was not doing well at all. Tommy’s parents are in their 80s. His dad has been in assisted-living for several years, his mind and health have declined, and he was just recently moved to a nursing home. He has been going downhill for years and been in the hospital several times when he was not expected to live. But somehow he always pulled through. So for years Tommy has realized that each time he saw his dad could be the last.

We continued our day at the zoo and had supper with Serena and family before traveling to Middleton. Tommy dropped the kids and I off at his mom’s house and went on to the hospital where he and his oldest sister spent the night. At this point his dad is in ICU with pneumonia and sepsis from ruptured bowel. They were told that his body was shutting down. Not knowing how long his dad would hang on, Tommy picked the kids and I up the next afternoon and took us home planning to get his car and head back to Tennessee. But as he was about to leave home, he received a call from his middle sister saying that his dad had gone into respiratory failure and died.

We sat down and told the boys. Sweet, sweet Titus grinned really big and said, “HEAVEN!” Oh, the faith of a child. He had told me a few days before that he had a dream while he was sleeping about heaven and that it was lots of fun. One night I was reading the Bible story of Eli and Samuel to Titus and Rachel. We talked about God speaking to us in our hearts. Titus said, “I know! He talks to me!”

On Friday Tommy returned to help with the funeral arrangements. The kids and I went up to Tennessee early Saturday morning to attend the visitation and funeral. Rachel charmed everyone there. She was able to meet many of her relatives, including Tommy’s three sisters and one of her cousins on his side of the family.

Neat thing about Rachel’s name. Through all of my pregnancies “Rachel” was always our girl name partly because we like Bible names and partly because one of Tommy’s favorite aunts was named Rachel. Aunt Rachel died a while back, but her daughters were thrilled to meet our “Rachel”.

The funeral service was short but quite moving. Tommy’s dad was an alcoholic when Tommy was younger, so life was pretty rough during Tommy’s growing-up years. But for many, many years later in life he was very active in Alcoholics Anonymous. Tommy would occasionally have people tell him how much his dad had meant to them in their own recovery.

The minister who performed the funeral service was a very young man who had met Tommy’s dad through AA. Tommy’s dad drove him to AA meetings for two years while his license was revoked. Over that time they became close friends. The young minister shared how people would see them together and think that Mr. Stewart was his grandfather. He shared that it was strange for someone his age to have an 80-year-old man as a best friend but that is what Mr. Stewart was to him.

The graveside service was very moving as Tommy’s dad served in the Marines during World War II. Two Marines were present. One played “Taps”. Then they folded the flag on Mr. Stewart’s casket and presented it to Tommy. They said, “This is presented to you on behalf of a grateful nation in honor of your loved one who fought to defend her.” It was so touching. Then one of the Marines was so kind. He came up to Tommy afterward and asked if he could refold the flag because this was his first time to do this. He did not get the edges as crisp as he wanted, and he wanted to get it right.

After spending some time visiting family at Tommy’s mother’s house, we headed home because my sister and her girls were in town to meet Rachel for the first time. Her girls are 6, 4, and 1 1/2. They have been dying to meet Rachel. As soon as we pulled in the driveway at my mom’s house, they came running out to greet us. Nora Blayre, the youngest, and Rachel almost immediately got into an argument over a doll. Eliza who’s four played babies with Rachel. Odd to me because Rachel never plays with her multitude of baby dolls at home. I guess she just needs to be around girls some. And Mary Carsen, the oldest, was so great about explaining things to Rachel. Rachel had fun playing with Mary Carsen and Eliza in the bathtub.

My sister took more photos than I did, and I haven’t gotten them from her yet. But here are some.

Nora Blayre, Rachel, and Eliza having a tea party in Rachel’s room

Much time was spent playing with/traumatizing Granny’s kittens during the weekend. Here’s Eliza holding one.

Titus, Caleb and Mary Carsen playing in the mud

Rachel and Aunt Christy

We had planned to spend the night at my mom’s to see them as much as we could since they were leaving the next afternoon. But Caleb, our daredevil who had to get stitches twice within three months when he was five, was playing on Granny’s exercise machine and broke off half of his permanent front tooth exposing the nerve. Caleb’s a tough cookie, but he was in a tremendous amount of pain. We couldn’t get in touch with our pediatric dentist. But we talked to two dentists (one is Tommy’s brother-in-law) who both said that if the nerve was exposed Caleb would need a root canal. So Monday morning early we were at the dentist’s office expecting the worst. But a new dentist in the office we go to said that she wanted to try something. She did some things to encourage the nerve to heal itself and reattached his tooth. Only time will tell if it is healing successfully, but so far so good. If he begins to have problems with it, he will need a root canal.

As far as things with Rachel, since we hit the two month mark, things are starting to feel more normal. I have been working hard to have a daily routine. She is slowly learning what is expected of her during our school time–mainly to play quietly while I work with the boys. She likes to do her school too and asks me when she can have school. I’m not doing a whole lot with her right now–some pretty basic workbooks with drawing, cutting and gluing and reading lots of books. I figure what she needs most is time to play and just be a kid for a while. She and Titus have been spending lots of time outside since the weather has been so lovely. She has gained five pounds since we’ve been home and grown 1/2 inch. She still loves to eat!

Rachel and Mom

Yes, we are absolutely rotten! This is the first family photo we’ve taken since we’ve been home.

Last Sunday my darling Caleb turned nine! He had a sleepover on Friday night. It was a combined party for Caleb and his best friend Robert. They were born eleven days apart. Robert’s mom and I think they were friends before they were even born. They are soul mates. I really think that they will always be friends no matter where life takes them. I am so thankful that Caleb already has a friend like Robert in his life.

Caleb and Robert blowing out their candles

Best buddies!

Caleb is a warrior at heart. He is the most competitive of my three competitive boys. He is passionate. Whatever he feels, he feels strongly. Whenever Caleb is happy, he is a delight to be around and loves to make anyone who is upset laugh by his clowning. Whenever he is unhappy, he makes us all miserable. He is frequently a defender of his brothers and now Rachel whenever they are in trouble with Tommy or me. He is daring, not afraid of anything, exulting in danger. When he was a baby, he went from crawling to running and climbing on anything he could find to climb. He was perpetually covered with bruises, scrapes, and bumps on his head. I have written before about how he is a natural athlete. He was just made to move and is beautiful to watch. And on the ball field, you better watch out, because he is intense. He was the only kid on his team who took t-ball seriously. I am very much looking forward to seeing what God is going to do with his passionate heart and his talents. Whatever it is, I know that the journey there will be thrilling.

Caleb and Mom

Caleb with Molly (four months old!). She is going to be HUGE!

At our house we are so excited that it’s baseball season again!

I love to garden! Each spring I take the kids to pick out flowers and plant a pot of their own. Here are Rachel and Titus preparing to plant their flowers.

My boys usually spend Friday nights with my mom. Rachel always wants to go with them. She frequently packs her suitcase on her own and tries to go. Then she’s disappointed when I tell her that she cannot. I’m partly worried about my mom handling all four of the kids, and I partly have felt that Rachel’s not ready to spend the night away.

The Friday night of Caleb’s birthday sleepover I decided that this would be a good time for Rachel to stay at Granny’s. It would get her out of the boys’ hair, and she and Granny could have some one-on-one time. She had a blast! Note: my mom is a perfect and typical grandmother. She lets the kids do almost anything they want and will do whatever they want with them. Granny said that Rachel kept pointing to the floor at her house saying, “HuiHui stay Wai Po’s.” (Wai Po= grandmother). They made cookies, went to Wal-Mart to get candy, rings, and a Barbie, and who knows what else they did. Rachel was excited to get home though. I heard her before she even got to the door yelling, “MOM! MOM! MOM!”

Granny and Rachel

Rachel loves to put stickers all over her face and her body. Here she is in the car last Sunday on the way home from church.

Her brothers told her to put all of the stickers over her mouth, so she did.

I HOPE EVERYONE HAS A JOYOUS RESURRECTION SUNDAY!

Spring Break

We took our spring break from school last week. It was so nice to just relax, do some spring cleaning, and enjoy being outside.

Here are some photos. The first are of Rachel in some new girly pajamas that my aunt sent to her. She loves them!

“Move, Didi(little brother)! This is my photo shoot!”

Being silly!

Rachel LOVES to help me in the kitchen. Here she is kneading some bread.

One of the biggest changes in our household since the addition of Rachel has been the amount of arguing. I guess I just took for granted how well the boys all got along. They would play for hours together without a single argument. Of course, they do argue from time to time like all siblings do. Now I feel like I’m running interference much of the day. It became most clear last week when we were not having school.

Here is a rare moment when all four are playing together WITHOUT ARGUING.

I love this photo of Titus!

Rachel getting good and dirty!

Caleb in the sand

Eli’s dirty hands

Another realization that has taken a while to come is that Rachel cannot handle everything that Titus can. I try so hard to treat them the same since they are so close in age. But emotionally Rachel is much younger, so she is not able to handle everything that Titus can. For example, Titus can walk beside me in the store without grabbing things, crying for things, and running away. But Rachel cannot do that yet, so I put her in the buggy like I did with the boys when they were younger. It’s rather confusing since she is older (by one month). But it has been nice realizing that it’s okay to set different boundaries for them since they are such different ages emotionally.

Two funny stories I meant to write last week but was without internet.

A few weeks ago on a warm afternoon Caleb and Titus wanted to have a water balloon/water gun fight. They put on swimsuits, and, of course, Rachel wanted to join them. So I put on her swimsuit also. They played awhile and had lots of fun. Then the boys decided to change into dry clothes. Well, I guess Rachel was tired of her wet suit also. But instead of going inside to change into dry clothes, she just took her swimsuit off and continued playing outside until Caleb came and told me.

Then last week Titus and Rachel t00k a bubble bath in our whirlpool tub. At the end of the bath they were still covered with bubbles after draining the water out, so Tommy put them in the shower to rinse them off. This was Rachel’s first time in our shower. She immediately pointed to the drain, said, “Potty!” and squatted while Tommy is yelling, “NO! NO! NO!” I guess it reminded her of a Chinese squatty potty.

Bubble bath photos