Grace's incredible story- Previous post July 21st

Grace's Incredible story

Many of you are probably wondering about what happened to Grace these past several months. I’m sorry it’s taken us so long to update you guys, but now that the dust has somewhat settled, we’d like to share her incredible story.

Grace was born in November- healthy, happy and vibrant. We never imagined that she would have any problems at such a young age. When she was 10 days old, I was feeding her in the middle of the night when she suddenly developed brief jerking movements of her arms and head. It looked like a small seizure to me, but newborns do such strange things with their movements I wasn’t quite sure what to make of it. 5 minutes later, she did it again. Then again and again. I knew immediately at that time that we had to take her to the hospital. She was having clusters of seizures.

That first hospitalization was scary. We didn’t know what was going on. Little did we know, this was only the beginning. The doctors at the Mayo Clinic were wonderful, but they weren’t quite sure initially what to tell us either. All her labs, imaging studies, MRI scans looked normal. Her EEG (electroencephalogram) did confirm that she has seizures but we didn’t know what the cause was. All we knew was that something was disturbing her brain electrical activity. Scary words were brought up that could be the cause- words like possibly “metabolic disorder, enzyme deficiencies, rare genetic abnormalities..” Aaron and I were absolutely heartbroken. We cradled our precious little girl in our arms, preparing to lose our third child and prayed God would give us answers. At that time we were so worried and scared, all we wanted were just some answers and for Grace to be okay. We went home that week with some new medicines that helped her seizures, but still completely clueless about the cause. In the back of my mind, coming from a medical background, I was digging into my distant knowledge of pediatric neurology and thinking of the worse case scenarios. Fabry’s/Krabbe’s/Sandoff’s diseases…Adrenoleukodystrophies? Grace probably has some rare metabolic genetic disease that will consume her life soon, and we won’t have her for very long. My mind was consumed with questions, and I poured over literature and readings about pediatric epilepsy. The information I gathered was not encouraging at all, infact made things worse. I lost many nights of sleep, either watching Grace’s every movement or researching literature about her condition. I had never felt so helpless in my life, and was so devastated that this was happening to a tiny, innocent little baby who barely had a chance at life.

Luckily, our team of neurologists (some of the most thorough, compassionate and intelligent people I have ever met), took the time to take a much closer look at her MRI scan and noticed an area over the right side that didn’t look normal. It was so subtle that it was initially missed. All the EEG studies correlated to her seizures coming from that focal area of her brain. With these findings, they felt confident calling this area of seizure focus a “cortical dysplasia” which is basically an area of the brain where the nerve cells didn’t migrate normally during development. As strange as it sounds, we were actually overjoyed to hear this information. We had a diagnosis that was not terminal. We had answers. Bad news? Cortical dysplasias are a notorious cause for seizures and will not go away unless it is removed surgically. She will eventually need to have brain surgery. If not, she may have seizures for the rest of her life. The thought of brain surgery was terrifying, but in our minds at least cortical dysplasia is something that is potentially treatable. The recommendations were to grow her a little more until she’s at least 6 months old, ideally a year old. Her little brain at 10 days old was way too fragile for such a major surgery. We brought her home on a few medicines to help control her seizures (one of them is quite expensive- Sabril, which is newer on the market and would cost us >$20,000 a month if we didn’t have Mayo insurance)

Grace was seizure free for 5 wonderful months. We watched her grow each day. She was developing so well, smiling and laughing with us all the time. She loved people and being around strangers. We watched all her milestones evolve. She was rolling over, sitting by herself, trying to crawl… it was incredible. We enjoyed every moment of it and were so happy there weren’t any seizures. In fact, there were times when we almost forgot that she had health problems until we had to give her medicines at night. We tried to forget that she will need brain surgery in half a year

We were reminded again all too soon on Memorial day weekend. On our way back from Chicago, Grace wasn’t acting right in the car. She was staring off into space and wouldn’t stop drooling. She looked a little swollen around the face and seemed like she was having a hard time breathing. We took her to a local ER, where she was treated for what we assumed to be an anaphylactic reaction to something she may have eaten. However, looking back, this may have been her first atypical seizure after all this time. She bounced back just fine we were able to take her home. The next day, on my way back from work, mom called from home, “I’m calling 911, Grace is having seizures again and it won’t stop”. This time, she was in status epilepticus (non-stop seizures) and it went on for 45 minutes before we were finally able to control it.

That was the beginning of our 6 week nightmare in the hospital. Everything went by in a blur, I don’t even remember most of the details. Sometimes I think my mind blocks out things subconsciously so that I don’t have to think about it. Maybe I have some temporary memory loss from all the sleep deprivation and stress.

The doctors had a really hard time getting her seizures under control. The first week, we had to repeat all of her studies including EEG monitoring that lasted several days, repeating MRI’s that required for her to be intubated, blood draws, IVs. She had wires hanging from every extremity that made it difficult for us to hold her and comfort her. This whole time she was having seizures that required rescue medicines to stop them. Unfortunately the rescue medicines would make her extremely drowsy and suppress her breathing. At one point she aspirated on some of her secretions during her seizure and had difficulty maintaining her oxygen. I remember getting into a heated discussion with one of the interns at night because he was reluctant to treat her for aspiration pneumonia despite clinical and radiographic evidence. Blood work was ordered instead, which woke her up and she went into status epilepticus again. Basically, by the end of the week our routine was trying to get Grace to take naps, because once she was awake, she would have seizures. We did everything we could to keep her asleep. When she had her seizures, she looked at us with her helpless eyes and would cry afterwards. She was so uncomfortable, and we would try our best to smile and comfort her but we were screaming on the inside. Things weren’t working. Things were getting worse and we just didn’t know what to do. Finally after a week of this routine, despite being maxed out on four medicines, she finally had to be intubated and transferred in the ICU where she was put on a continuous drip to suppress her seizures. Sure enough, she also had aspiration pneumonia.

This was probably one of the darkest and most difficult times Aaron and I have ever gone through. We had a LOT of support from all of our friends nationwide, thank you to everyone who have prayed for us and kept us in your thoughts. Our dear friends, Jon, Rachel and Annabelle Le were among those who were there for us from the very beginning. We met them at Autumn Ridge Church not long ago, but they have become one of our closet friends here in Rochester. Rachel was able to get me in touch with another family from our church- Tait and Jaci Shanafelt, who also went through health difficulties with their family and had given a testimony at Church several months ago. Their experiences in the past helped us identify with another family and gave us hope and support. Through them, we were able to meet Dr. Sheri Crowe, another member of Autumn Ridge Church and a pediatric intensivist who just so happened to be working in the ICU that same week. She intubated Grace, treated her with the utmost, thorough care and provided our family with such amazing support. It’s so incredible the people God put in our lives and how He interconnects all of us together. It’s no coincidence that we meet these people.

Grace had to undergo brain surgery early because her seizures became so difficult to control. There was no way we could bring her home with that amount of medicines and the frequency of seizures she was having despite being on those medicines. We were relieved when we met the neurosurgeon, Dr. Wetjen who was able to take her to surgery almost immediately. Aaron and I were so grateful that we were receiving care at Mayo, because I don’t think things would’ve been expedited so quickly at any other institution.

The surgery took about 4 hours. Afterwards, I was just so happy to see that she was still alive. Her face was a little swollen and her right eye was swollen shut, but she was extubated pretty quickly. She looked at us afterwards and smiled a few times. Our hearts melted, and we were filled with hope that this was the end of it all. We can take her home now, she will have no more seizures, and all will be okay. We let our guards down  a little too early because her seizures came back within a few days. This time, worse than before. This time, she was having them in her sleep and unknowingly- a term that is called “Subclinical seizures”. This is worse because she was actually having more than is observed by us. The seizures were waking her up from sleep and she was not able to get a good night’s rest. This sleep deprivation also made the seizures worse.

Another EEG and MRI had to be repeated. It showed that a residual part of the abnormal tissue still remains, a little deeper. They wanted to make sure that this was the only place of seizure focus, so after another week on the ventilator, she underwent a larger surgery, this time in a two part process. The first part exposed her brain as a grid map is placed on top to map out any other areas of abnormal electrical activity. Her brain is exposed without any bone flap (they kept it in a freezer somewhere) for about 48 hours. This was able to identify that there were actually more areas of her brain that were irritated that the MRI could not visually see. It extended more posterior (backwards) and lateral (towards her ear). These brain areas also needed to be removed in order to ensure that there will be no more seizures. The only problem with that is, as you go more far back in the brain, you start encroaching into areas that control motor function. It would be expected that she may be weak on her left side (arms, legs, face). She may not be able to suck very well or take in food. If this was the case, she may need a feeding tube. All this was terrifying, but we knew it had to be done.

The waiting game was the hardest. We wanted the surgeries to happen as soon as possible. By this time, we had already been in the hospital for 4 weeks, taking shifts watching her, worrying, waiting…

Praise God that the surgeries went well. As expected, her left side could not move at all. Her left face drooped a bit. Her post op course was complicated by respiratory related issues and she kept dropping her oxygen levels. She couldn’t clear her secretions because of all the medicines so it clogged up her left lung. Fortunately the tube didn’t have to go back in. Afterwards, she couldn’t suck very well, but we worked on it for a day and she remembered finally how much she liked to eat, and was able to take in her bottle. Each day, we prayed hard that we wouldn’t see any seizures. We haven’t seen any yet :) It’s been 3 weeks since her last surgeries and we were finally able to bring her home 2 weeks ago. Her left side is finally able to move a bit more now and she’s giving us some more smiles and laughter now.

I can’t tell you all that we learned from this journey. It’s one of those things that is almost impossible to explain. All I can say is that God is real. God is visceral. He provides, sustains, strengthens and loves you. He answers prayers. He listens and comforts. So many things happened along the way that is no way just a coincidence. Aaron and I have never felt His presence so near. This is has been the most difficult experience, but we still cannot stop praising Him for what He has done. He is a God of miracles and a God of Hope. We know that future is unknown, but we are ready to face whatever obstacles come at us, because this experience has prepared us for that. Every chapter of our lives have been created to prepare us for the next, and I’m so grateful for the chance to be alive, live this life, experience being a mom to this beautiful baby, and so many other things.

One passage I kept reciting over and over whenever I got nervous, anxious or afraid was Phillipians 4: 6-7

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”

There were some times I didn’t even know how to pray. Jaci Shanafelt reminded me, even if you don’t know how to pray during this time, it’s okay because God hears your soul.

We were supported by so many people across the nation from Cleveland, Ohio to the West Coast, people we’ve never met before but prayed faithfully for Grace, by visitors (Rachelle and Michael Keng, Ethan, Annie and Seth Chan. Autumn Ridge Church friends, Mark and Mira, Church members we’ve never even met before, co-workers from the Geriatric department of Mayo, family from Chicago, friends from Rochester Chinese fellowship) Thank you SO SO much for coming. Seeing you guys really helped uplift our spirits, we appreciate you guys so much. Thank you Chicago friends and CCF family for your prayers. Thank you for Rachel, Jon and Annabelle Le for coming to visit us almost EVERY single day, dropping off food, ice-teas, offering an encouraging presence, taking me to the mall during Grace’s surgery! Thank you to Jaci Shanafelt and family for visiting us in the hospital even though we missed you. We are grateful for the meal you made for us, the book of Hope, and for giving us SO much hope and reminding me that things will be okay. Thank you to Dr. Sheri Crowe and pediatric ICU staff. Thank you Rochester Chinese fellowship, ShiGao and family, YeDan and others for your prayers and gathering together to specifically pray and fast for Grace before her surgeries. I cannot begin to express my gratitude. Thank you also to the LCCC Lansing Chinese Fellowship for your prayers and supporting our family through this.

Some incredible miracles that happened with Grace-

God gave her 5 months of seizure freedom that allowed her to develop, grow and prepare for the surgery. He provided financial means for supporting Grace and her medicines. He gave us incredible friends and support placed in our lives from Autumn Ridge Church and across the nation. She survived through 3 extensive brain surgeries and is now seizure free. Tell me that’s not a miracle.