Sunday, November 25, 2012

When it rains, it pours...

I'm so sorry for my lack of posts this past month! I hope everyone had a wonderful thanksgiving filled with delicious food, friends and family!

I haven't had a chance to update many of you (especially on the details), but our family had unfortunately spent the last month in the hospital again - first for little Grace, then for poor Aaron. After each hospital stay, we always think that this will be the end of it all- that we won't ever have to go back again, Grace will be happy and healthy, and we can all get on with our lives. We've learned never to assume anymore, especially after this hospitalization. But there is much to be grateful for, and much to hope for.

The late afternoon of October 22nd, I was in the middle of dictations after clinic. I got an urgent call from Aaron saying that Grace had started vomiting in the late afternoon and is now having a fever. She seemed perfectly fine and happy just hours ago. Now suddenly, it became very difficult to keep her awake. When she did wake up, she would vomit. A few days prior to that, one of her sutures behind her ear from her previous shunt surgery had started draining some fluid. Even though it was re-sutured and glued tightly back together in the emergency room, I feared that it probably had gotten infected. She was having symptoms of increased intracranial pressure and signs of infection from her brain. I dropped everything that I was doing and rushed back home with tears blinding the road in front of me, praying that we would be able to get her to the hospital in time.

Sepsis set in real fast. We got her as quickly as possible to the emergency room. By then she was extremely lethargic. She had vomited so much that her skin wrinkled with dehydration. Despite multiple pokes, her veins were so collapsed from sepsis and dehydration that the emergency room staff were not able to get access. Central line attempts also failed. Her oxygen and blood pressure were starting to drop. I knew that if we didn't get access to her vessels soon, she may go into septic shock and we could potentially lose her... again. The last resort option was obtaining access through her bone marrow, which involved drilling a hole into her leg. When I saw the drill, I almost fainted. Aaron, who is usually pretty brave about these things, couldn't watch either. We had to step out of the room and prayed hard she wouldn't suffer too much. We were so grateful for the emergency room physicians, who were so level headed and acted quickly. All this, which seemed like hours to us, happened over the course of 15 minutes. She was able to get IV fluids and antibiotics were started almost immediately. If she had gotten to the ER any later, I'm not sure if she would've made it. I struggled hard not to be a doctor at this time and just be a mom to Grace. I had to let go, and trust that the ER physicians will handle the situation.

The bacteria that was isolated from her brain fluid was ESBL Klebsiella pneumoniae- fancy way of saying that this organism was resistant to most standard antibacterials that are normally effective against it. It had gotten into her brain, infected her shunt, and probably caused some meningitis. She was taken to the operating room early the next morning to remove the shunt, because no matter how much antibiotics she got, if an infected indwelling object is not removed, the infection will never clear. That was her 5th brain surgery. Seeing her after the surgery was heartbreaking. She was not a 6 month old little baby anymore. She was now an 11 month old almost toddler who could experience fear, remember pain, and understand that she is in a foreign place with people who are seemingly trying to hurt her. It was so difficult to calm her sometimes because I couldn't make her understand. I wish I could've spoken her language and bring her peace and comfort, but she was just so afraid. Everything scared her. She didn't trust anyone. She stopped eating and refused to drink her milk because she had vomited so much that everything made her gag.

Fortunately, over the next few days, antibiotics were adjusted to treat her infection, and her fevers resolved within a week. Her shunt had been taken out, but a temporary drain was put into her brain to help removed the access fluid into a bag. All this had to be kept in place for at least 14 days for the infection to completely clear. At that time, we were going to then decide to see if she needed another operation to replace her shunt. 

We spent the next 3 weeks in the ICU. Our days were filled with frustrating attempts to get her to eat and making sure she was getting enough nutrition. She wasn't. She was irritable, uncomfortable and extremely scared. Our sleepless nights were fragmented with trying to help her get to sleep. She would wake up every few hours because of the discomfort from her meningitis, or loud noises, or vital checks, etc. No matter what we tried, she just couldn't get comfortable, and she wouldn't eat. We saw her day by day start to waste away and get skinnier, and eventually lost 20% of her body weight. I was filled with helplessness again, a feeling that is just so awful- to see your only daughter who had already gone through so much, to have to go through more suffering and basically withering away in front of our eyes. 

The only thing we could do was pray. "Cast thy burden upon the LORD, and he shall sustain thee: he shall never suffer the righteous to be moved." Psalm 55:22 
All our friends and family from across the nation, our prayer warriors, supporters, church families and body of Christ- everyone who have been part of Grace's journey from the very beginning, again came together to pray. Baby Grace was in the prayer of faithful friends who have never met her, small groups /fellowships who have only heard of her, children of friends who never forgot to remind their parents to pray during dinner time and bedtime. She is truly the luckiest baby in the world to be loved and cared for by so many. 
We prayed hard that God would bring her comfort and healing, that she would get enough nutrition, and that He will continue to protect her and save her. We prayed hard for a MIRACLE- that her little brain will re-learn how to absorb fluid, so that she will not need another shunt. He is the only one that knows her more intimately than any physician and surgeon. He knows her by every cell in her body and is the only one who could heal her from that aspect. 

She gradually improved over the next few weeks. Her drain was clamped for a few days to see how she would do without it. She seemed to do fine, so it was pulled out. Unfortunately, after this happened, she started to deteriorate neurologically. It was determined at that time, that her brain was still not capable of re-absorbing CSF and she still needed a shunt. We were initially scared and disappointed, but we understood that at this point, another surgery needed to be done or else she wouldn't survive.
Shunts don't last forever. They break. They get infected. They often malfunction. As long as she has it, I felt like we will always worry something might happen. She was declared to be "shunt dependent", and underwent her 6th surgery on November 7th.

Although I felt like this hospitalization was the most difficult for all of us, everything that happened before this had prepared us mentally and spiritually for this time. There were definitely many times where I felt so helpless and terrified out of my skin. I would quietly escape to the bathroom, fall to my knees, sobbing in fear and crying out to God for help. Despite all this, our faith has never been shaken. I know without a doubt, that Grace and our family are going through this for a very specific purpose. We've had a lot visitors come by to see Grace. Among them were friends from Chicago (Dave and Sarah Ly), and several close friends from Rochester Chinese Church. One day, a pastor's wife who is closely involved with RCC came with our friend Shi-Gao. She visited with us for a bit, and the words that she spoke truly touched my heart. She looked at Grace, and said with such conviction: "God has something extremely special planned for this little girl in the future. We don't know what, but she's going to be incredible. Just wait and see." My  heart was suddenly filled with warmth and joy. I suddenly felt just so much excitement. Aaron and I looked at each other and we were just overcome with a sense of happiness, that we were chosen to be the parents to this wonderful, beautiful little girl, who is going to be incredible someday in ways that we cannot see. She has already been such a blessing and such a great testimony.

Grace was able to come home 2 weeks ago. She's doing great! She's eating again, gaining her weight back and is back to her normal self. Each day she does something new that surprises us. She's even starting to say some words. We are weaning her anti-epileptics and she is almost done with her Keppra. Her sutures are healing well, and she is as happy as can be. She's turning 1 years old on Monday. We were able to celebrate a little bit early with her yesterday :)

 Grace with Grandma

We prayed for a miracle. She has been a miracle from the very beginning. Given all that she has gone through, 6 brain surgeries, septic shock, seizures... I look at her now, and she is just doing so well. She has not had ANY seizures. Although the shunt did have to go back in, miracles happen in His time and in His way. We just don't know how and when, but trust that He hears our prayers and will never forsake us. The shunt has also been a reminder to us that just like how Grace depends on it, it is like a reflection of our faith in Christ. We depend on it for our survival. There will be times where our faith can break, malfunction and get infected, but it can be restored and cleansed. Just like how the shunt has given Grace a chance at life, our spiritual shunt has given us a chance at eternal life. 

We will never know what will happen in the future for us, but we are ready and prepared to take any steps together with Grace to support her. It brings a smile to my face that many of you reading this today will also continue to walk with us throughout her journey. Thank you, from the bottom of my heart.

When it rains, it often pours, but the sun will always continue to shine. Our lives are always sunny with a side of something wonderful. 

Thursday, October 18, 2012

Fall layering & Alice in Wonderland Coat

Happy Thursday! 

Today was a pretty gloomy day in Rochester, but the lighting was perfect for a fun photoshoot at the Plummer house and surrounding areas. I fell in love with this coat that I got from last year. It reminds me of Alice in Wonderland for some reason. Maybe it's because of the ginormous buttons and the cute bow. It has a nice, light wool fabric that's perfect for fall layering. 

The Plummer house

Ready for an interesting and brief history lesson? Pictured behind me is the Plummer mansion. Dr. Henry Plummer was a well known internist and endocrinologist who also founded Mayo Clinic alongside the Mayo brothers. Not only was he a great physician, Dr. Plummer was a successful inventor. He was the first to develop a cable-carrier system, directed the diagnostic and research laboratories. He was the first to understand and operate the X-ray machine, and was known as a pioneer in the development of Xray diagnosis and therapy. Furthermore, he was also the one to put forth the idea of medical records, and facilitate the organization of documentation! There is so much history of medicine in Rochester. I feel so privileged to be part of this incredible organization and contribute to it (even though I'm really not doing much).

The home is apparently beautifully furnished on the inside, but I haven't had a chance to see it yet. Perhaps another time! The mansion is mostly used now as a rental facility for parties/events/weddings.

Lesson in Medicine

Plummer-Vinson syndrome was named after Dr. Plummer: a constellation of symptoms consisting of dysphagia due to esophageal webs, iron deficiency anemia and atrophic glossitis/stomatitis. Cause: Mostly unknown, but may have genetic and nutritional components. Occurs mostly in post-menopausal women. 
There you go. Internal medicine residents- This may show up on your boards. You'll thank me later

I am again using my favorite layering piece: The lace peplum shirt. I think I've worn it every single day this week. It adds the perfect bit of femininity to any outfit, and it's not too bulky. It looks really beautiful with a suit too. I think I'll be using it for many future posts to come. I hope it's not against fashion blogging rules? I'm pretty new at this, so I may break a few rules here and there :)

This sweater I almost forgot about, but I had gotten it at Plato's closet (one of my favorite stores) for $2.50. They buy and sell gently used clothing. You probably won't get much for your clothes if you sell it to them. I think between 50 cents and a few bucks, but occasionally they'll have these amazing extra 50% sales off reduced items, where literally I'll walk out of the store with 10 pieces of clothing for under 20 bucks. It's amazing. Too bad there aren't any in Rochester.

|| Outfit ||

Sweater: Thrifted from Plato's closet for $2.50!
Lace layer: Peplum top from (As seen here)
Pleated skirt: Halogen
Jacket: ruche (last year)
Shoes: Thrifted from Plato's closet for $5!

Daily dose of Grace

Praise God, still no seizures!! WOO HOOO!! Her bump is gone after her last surgery!! We did have to take her to the emergency room last week. She scratched one of her sutures off and started oozing CSF (Brain fluid) from that wound site. They stitched her back up and she's good to go again. She has re-learned how to cry and is starting to whine a lot more about things- which I'm not sure if it's a good or bad thing. This is her last week of weaning off Sabril and we haven't seen any spasms. Another thing to be thankful for!! Thank you for your continued prayers for her recovery!

Thursday, October 11, 2012

Something wonderful is growing

Okay, so first of all, no I'm not pregnant.

Last weekend, I traveled to Cleveland, Ohio for my best friend, Rachelle's babyshower! She will be expecting a little girl in early December, and I can't wait to see the little angel. I especially can't wait for her and Grace to meet. We are going to force them to become best friends just like their mothers. I don't care if they hate each other. They are going to be best friends, yes they are!

This fabulous baby shower was organized by the one and only Beverly Lam, along with the talented help of Nancy Fong, Esther Fang and Charlene (church friends of Rachelle's). Beverly and Rachelle have the most creative ability to plan and organize the most amazing parties. I haven't been to many baby showers, but this one, themed "Something wonderful is growing"looked like something straight out of a magazine. I wish I had their talent, but all I really know how to do is plan games. Haha.

The baby shower was hosted at Nancy Fong's beautiful home (thank you, Nancy for opening up your home and helping with the shower!) The decor consisted of a table filled with colorful ribbons and creative supplies for a hair bow making activity, a onesie display with various stuffed plush vegetable toys, lots of food, painted mason jars with lavender flowers... AHHH and so much more! See below!

Forgot to mention that Beverly is also expecting :) 

Love the colorful fruit display. I think that orange with the little pink pacifier is hilariously cute

Vegetable decorated cupcakes with assorted flavors. Made by Esther and Charlene

Spray painted mason jars with lavender flowers. 

Stuffed plush vegetable toys

Hanging onesie display and vegetable toys from The Gap

The wishing tree: Green Leafs- notes for Rachelle and Mike. Butterflies- notes for Maleia

Assortment of colorful ribbons, soft fabric and decorative items for DIY hairclips

End result!

Giant plush toy friends.

Being silly

Welcome Baby Maleia, we cannot wait to meet you!

The highlight of this trip was not only being able to see Rachelle, Beverly and be part of this baby shower, it was also being able to meet all of her friends from Church who have been praying faithfully for baby Grace. It was so nice to be able to put a face to all the names on the email chains that I've received over the past few months while we were in the hospital. We appreciate you guys so much and could not have gotten through these past few months without your loving support and prayers. Thank you again and again. I hope to see you guys again soon!

Friday, October 5, 2012

Goosecrap lakeside Rendezvous

Things that make me happy

- Grace is much better. Her fevers are gone! She's happy again and laughing again, back to her normal self within a week of her surgery. Unbelievable! Praise God!
- Fall colors- especially in Minnesota. Absolutely beautiful.
- Crisp weather
- Spending time with family! Dad and Grandma are back from China. The whole family is together again!
- Clothes from :)
- Blogging as stress relief. Haha

Today Aaron and I took a stroll around Silver lake. The weather was a bit on the colder side, but I couldn't help it. We've been cooped up in the hospital all week, I just had to get out and enjoy what's left of Autumn before it gets real cold in Minnesota. We nicknamed this lake "Goose crap lake" because last year we went paddle-boating on the lake and realized very quickly that there is nothing silver about this lake. It's literally filled to the top with goose crap. This area is infested with Canadian geese. They're everywhere!  Apparently they're endangered, and are very precious to this local area, therefore we can't shoot them... as much as I'd like to. 

Ever since our move to Minnesota, I had been doing a lot of online shopping. Mostly because there's really nowhere to shop here. One of my favorite online shops is They have the cutest, vintage inspired clothes for a very affordable price. I try to look for things that are versatile and work appropriate. This white, peplum lace shirt was a great addition to both my casual and work wear collection. I really wish they had a boutique nearby!!

I know it's kind of hard to see, but the belt came with the orange tweed skirt. It comes with these cute, gold detailed hardware consisting of a lock and key. Super cute

I am in LOVE with the above bag. It's the Prada saffiano lux tote, and it's absolutely gorgeous. Aaron got it for me last year...he spoils me so much! (I think he got it for me because he secretly wants to carry the bag). I carry it with me mostly to work, but it also goes well with any type of casual wear. I can fit a TON of things in there, including my books, notes, laptop, etc and never loses its shape because of the durable leather, and it's so well crafted. Plus, it's so durable and heavy that it can also serve as a pretty dangerous weapon if you need to use it to take a swipe at someone for whatever self defense reason! 

|| Outfit ||

White peplum lace top:
Orange tweed skirt:
Cardigan: Banana republic
Shoes: Tahari
Bag: Prada saffiano

Wednesday, October 3, 2012

Titanium head

We had an interesting weekend, to say the least. 

Last Thursday

Grace had another MRI to take a look at the bump over her head that kept fluctuating in size. She had a follow up appointment with the neurosurgeon the next morning. The results were not what we expected. She had a large pocket of CSF (brain fluid) that was outside, but it was definitely communicating with another pocket of fluid on the inside causing enough pressure that it was pushing against the left side of her brain. If this went on long enough, eventually her left hemisphere would've slowly atrophied. We did notice some subtle changes with her- she wouldn't eat as enthusiastically as before, and sometimes she would be tremulous when she sat for a long time, like she couldn't hold herself up as well. She seemed to startle a lot easier. One time Aaron made a loud, funny sound to entertain her. Instead, she startled in fear, shook uncontrollably and started crying. We didn't know what that was all about. Yes, daddy is scary looking, but he never scared her THAT much.

During the neurosurgery appointment, it was pretty much concluded that she needed another surgery. When? Well our awesome neurosurgeon was ready to drop everything that morning and take her to surgery immediately. He was leaving for the weekend, and didn't want anything to happen while he was away. It was one of those moments where we felt so blessed to be at the Mayo Clinic. I don't think this process could've been expedited any sooner anywhere else. The needs of the patient truly come first. Within hours, she was in the operating room.

What they found in the OR was strange. She had a bone skull fragment that was sunken in and partially resorbing due to the external pressure of the swelling. In addition, there was a large tear in the dura (outer membrane of the brain) that was about the size of a quarter and the source of her CSF leak. They were able to repair the leak and placed a subdural-peritoneal drain to help remove some more of the fluid in the long term setting. They took out the degraded bone fragment and replaced with 5 small plates of titanium. Our hopes are that as her skull heals and grows, it will grow over the titanium plates and eventually everything will just scar over.

Emergence delirium

Praise God the surgery itself went well. The nightmare came afterwards. 
When she woke up from the anesthesia, the poor thing was terrified. She didn't recognize us. In fact, every time we tried to pick her up to comfort her, she would start trembling VIOLENTLY and scream out in horror. I have never heard her scream like that before. It was a scream of pure pain and fear. It was the type of scream I would imagine if someone was getting their limbs chopped off. I held her in my arms and cradled her. Aaron and I sang to her, prayed..prayed and prayed for it to go away. She continued to tremble and scream. One time she shook so hard she convulsed for about 5 seconds and looked like a seizure. She did this over and over for about 3 hours until she finally calmed down in the ICU after repeated doses of sedatives. I don't know how I held it together during that time, but I had to do my best to stay rock solid and not break down. 

They call this phenomenon "Emergence delirium", which is commonly seen after someone awakes from anesthesia. I hope I will never have to witness this again. Her screams have been permanently lodged in my memory and it's a sound I will never forget.

The next few days continued to be challenging as she battled the discomfort of continuous high grade fevers. She was still scared of everything- every new face and sound, everytime someone tried to move her or hold her, it really upset her. This hospitalization was so different from the previous. When she was younger, she didn't know better, but now that she's older and is able to feel emotions of fear/anxiety, this experience was much more traumatizing for her and for us. Blood draws were almost impossible, and we still don't know if these fevers are related to an infection. The medical team had assumed that it is more centrally related, because if this was truly an infection, she would be a lot more ill.

Coming home

Over the next few days, she did better and we were able to take her home yesterday. Grandma prepared a nice bouquet of flowers to welcome her home. She still has some fevers here and there, but they're not nearly as uncomfortable for her. The swelling over her head has definitely shrunken in size, and she's a much happier camper nowadays :)

God's Grace

The strange thing is, when all this happened again, Aaron and I looked at each other and understood what we had to do. We were prepared for whatever was going to happen. We went through 6 weeks of this before, so as soon as we got to the hospital room on the first day, we knew our roles like the back of our hand. The hospital was familiar to us, and was like our second home. It was like our surrounding church community, friends, family all knew what to do too. Everyone started praying for Grace and spreading the word without hesitation or second thought. In many ways, this hospital stay was harder for our family than the previous, but God had prepared us. Every situation prepares us for the next. Though in heat of the moment, things may seem scary and out of control, but we have learned not to fear or be anxious, because God will never forsake you.

Each step of the way, Grace has gotten a little bit better. This is just another part of her journey. Thank you, everyone for being a part of her journey. She is one of the luckiest girls in the world to be loved by all of you.

Saturday, September 22, 2012

Letters to Grace

Dear Grace,

It has been almost 3 months since your last surgery. Did you know that you survived three brain surgeries? Mommy and Daddy were so scared, but you were so brave. You held through strong, and didn't cry at all. You amaze us so much, Grace! That's why we call you amazing Grace. Each day, we never forget to thank God that you are here with us. Each smile that we see from you is a reminder that you are such a precious gift that we are not suppose to have, yet God has chosen Mommy and Daddy to be your parents. We are so proud of you. You are almost 10 months now, and you are just such a delight. We love watching you grow day by day. 

You love to smile. You love to laugh. You laugh at everything! Sometimes you stare at your fingers and start laughing for no reason. You laughed so hard yesterday when Mommy tried to kill a nasty spider that was crawling furiously towards you. I thought the spider was going to bite you and threw everything imaginable at it. You had no idea how scared I was, but you laughed anyways- mostly at my screaming. You laugh the most when daddy does his weird dances and kisses your cheeks

We love to spend time with you because you're always doing something funny. You concentrate so hard when you play with your toys. When you laugh, you always end up hiccuping. When you eat, you like to sit in the most uncomfortable and awkward positions. You look the cutest when your face is smeared with baby food. You fart like an elephant, and your poop smells horrendous, but we love every thing about you.

After your last surgery, you couldn't move your left side much. Your arms and legs were very weak. You couldn't sit very well or hold your head up. It's been less than three months and now you're sitting by yourself without Mommy needing to help you! Your back and neck are getting so strong now! You still have a pretty large bump over your head where you had your surgery, it makes your head heavy and sometimes it's still hard for you to hold it up for a long time, but it's much better compared to before!

The world is so different when you can see it sitting, huh? Wait until you can crawl and stand! You'll have even more fun! Now we just need to work on getting your legs stronger! You are doing a great job though, keep it up! We are so proud of you!

You hardly ever cry anymore! You're just such a happy, content baby. The other day, you made a huge, nasty poop that squeezed out of your diaper and went all over the place. Yet, you sat there quietly and laughed like nothing happened. The only thing that makes you upset is having an EEG. I guess it reminds you of what happened in the hospital and brings back bad memories, huh? Hopefully you won't have to have anymore EEG's!

Mommy will write letters to you often. I will write letters to you because when you grow up, I want you to read these letters and understand how far you've come. I want you to know how many people love you, supported you and prayed for you during this time. We want you to know how much you mean to our family and how much Mommy and Daddy love you. Most of all, we want you to know how much God loves you. He has healed you of your seizures and had protected you this whole time. No matter how much we love you, God loves you more. He has made you perfect in His eyes, and you are just beyond perfect to us. You have brought us so much happiness everyday, and I hope that you will continue to grow to be a happy girl, and someday to a God loving, God fearing woman of Christ, and that you may share your story with many others as a testimony of God's Grace.

Mommy and Daddy

Tuesday, September 18, 2012

Closet Re-discoveries: Autumn Floral

Floral and brown studded suede 

I love autumn. I love the colors, the weather, the crisp air, pumpkin spice lattes. My birthday is in Autumn, it's also the season we got married almost 4 years ago! Our anniversary is next week! (September 27th). Minnesota is absolutely beautiful right now during this season. There's a lot of hills, trees, bright vibrant colors. I just love enjoying all of God's creation right now. Wearing florals make me even happier... it just adds to all the color!

I have NEVER worn this dress before. Hahaha. Just like the other one. Are you starting to sense a pattern here? It's such a pretty dress too.. I don't know why I've never worn it. I'm just weird like that. The picture above cracks me up. Aaron took it as a candid shot and I seriously look pissed off. I'm not sure what I'm sitting on either... looks like some sort of giant vintage gas tank.

We've been in Minnesota for about a year now, and there's still a lot of places we haven't been able to explore. I'm hoping that these photography adventures will also give us an opportunity to scope out all the elegant and beautiful places Rochester has to offer. This is an old barn that is near our home that we pass by every Sunday to go to church. It was nice to walk around it today! Other places that I'm excited to go to are the old mansions- Plummer house, Mayo mansion, etc.

Again, Aaron did such a good job with these pictures. He's still trying to figure out how to utilize his light source and experiment with camera angles, but he's learning quick. 

|| Outfit ||
Dress: Naked Zebra via
Sweater: Old Navy
Boots: Thrifted
Bag: Prada