Where in the World is Abby?

I looked back at the previous date of our last blog update and was like, "Wow! Where has the time gone?!" Sorry for leaving everyone hanging!! I am going to do my best to give the highlight real of the past 2 months or so to bring everybody up to speed!

Abby Update:

 Abby is continuing to grow and thrive in amazing ways! She turned three on October 28th and we celebrated with a fun COTA Birthday Party fundraiser as well as with a small party at home. At 3 years old, Abigail has transitioned out of early intervention therapies and is now in the intermediate unit. We are currently still meeting all of our new therapists. Abby will be receiving weekly therapies of Occupational Therapy, Speech Therapy, Physical Therapy, and a Special Instructor or Teacher. All of these therapists come to the home to work on each of these areas with her.

 Abby is also becoming so much stronger in her walking and loves to walk with just one-hand assistance now! She is also eating at the table for every meal with us- not eating a lot but her desire to eat is definitely improving. Her vocabulary is starting to pick up and she constantly has something to say...even though half the time, I have no idea what she is saying!

 One of the other great moments this fall was getting to visit a pumpkin patch AND go trick-or-treating! Abigail has never celebrated a Halloween outside of the hospital. October has always been a very hospital heavy month for our sweet girl and every October 31st, we were in the hospital. But not this year!! Abby was Moana for Halloween and though she was apprehensive about the whole collecting candy thing, she absolutely loved seeing all the people!

Medical Update:

 Abby continues to blow us away with how well she is doing medically. She had a little setback the beginning of October where she was hospitalized for 5 days with Adenovirus...that was pretty rough. But even through that, her liver numbers remained rock solid! 

 Our biggest issue lately has been with managing her potassium levels as we increase her anti-rejection medication to keep protecting her new liver. We just recently started her on a medication specifically to help decrease the potassium in her body and so far, it is working great. Her kidney numbers have continued to remain slightly elevated, but overall, trending down and very stable. And of course, her liver has been doing amazing! We continue to pray that her liver continues to do really well and thank God every day for the gift of organ donation!

One area that has been a struggle for about the past 3 weeks, are severe tantrums and screaming. As Abby is now three and her brain is finally able to begin processing things it couldn't before due to the high levels of MMA, we are beginning to see some huge behavioral issues. We believe some of it is due to the fact that she has a hard time communicating and can't verbally let us know everything she needs or wants, but also a brain that's on overdrive right now and is trying to catch up on the past 3 years of her little life. It can be extremely draining as a parent and heartbreaking to watch as she goes through these times. However, we know that this is just a season and one that will hopefully be behind us soon!

Overall, Abby is doing incredibly well! We could not be more thankful and grateful for how well things have been going post-liver transplant. There have definitely been some challenges and things we didn't expect, but the peace we have in knowing that Abby has an amazing quality of life now makes going through these temporary hardships worth it!

 I wish I could handwrite a thank you to everyone that has blessed us financially through COTA. Because of Abby's great health insurance and the lack of complications thus far, we have not needed to touch much of the funds- which is a huge blessing. Those funds are good for Abby's lifetime and will be available to her for whenever a medical expense arises. Thank you to everyone that has come out to the fundraisers and for the constant love and support you've given us as we continue on the this liver transplant journey!

Scars

  I was 10 years old when I had chicken pox. I vividly remember my mom telling me, "Don't scratch your chicken pox or they will leave a scar." In the moment, I didn't care about scars...I just wanted to the itching to go away. And to this day, I still have a scar from one of my chicken pox!

 Scars are inevitable in life- whether physical, spiritual, or emotional. Some scars are due to our own choices, some are due to the repercussions of choices of others, and others still are due to others choices for our own good. Each scar we have tells a story. Sometimes those scars tell stories of courage and valor, some tell stories of miracles, some tell stories we'd rather not retell, and some are scars that no one even knows we have.

 Abby has a lot of scars. From the G-tube site that gives her nutrition, to the port site that holds a special IV that allows her to have quick access for life saving fluids, to now an almost 10 inch scar that proves miracles happen. Abby also has a lot of emotional scars- being placed for adoption in early infancy due to the fact that the country her birthparents came from could not provide for her medical needs, the countless hospital stays that took the place of her newborn and early toddler years, and the many, many, scary, painful procedures she has been through in order for her to continue to thrive. But, I can guarantee you that she doesn't notice these scars. Yes, these scars are going to surface in the years to come and Dave and I pray now that we can share her story with her well as she grows and matures. Right now, Abby doesn't see the scars. She sees life. She sees couches to climb and messes to make. For once in her life, I believe she is seeing and noticing things in her little life that she never noticed before. She is conquering her eating and walking challenges. She is defying odds and pushing on...all because of scars. Scars that don't define her but drive her to become all that she can be.

 How often do we allow the scars of life to define us? Those teenage years of bad choices. The past relationships that ended over and over again. The physical scars of abuse, self-harm, and self-neglect. These scars don't have to define you. They aren't who you are. These scars are proof that you are human and in need of saving...in need of a Savior who loves you and wants to heal those broken places in your life. Don't let the scars of the past define who you are today; instead, let them drive you to the One who can make all things new. And then, like Abby, those scars become your story to tell. Your story that tells the world your scars were healed because of the scars of Jesus who died for you so that you could be made whole and complete in Him.
 

Born for This

 There is song I am loving right now called, "Born for This" by Mandissa. It is about a girl from the Bible named, Esther. An unlikely person with an unimaginable task trusting in an all-knowing God. Esther didn't come from royal blood, but became queen. Esther was faced with the task of stopping her husband, the king, from destroying her people...the Jews. But this would take telling him who she was- a Jew...this would mean coming before him unannounced and requesting something that no one had ever requested before...this would mean telling him that it was his best friend, his right hand man that had been the one to make the decree to kill the Jews therefore leading to his demise. There was a lot at stake for Esther, but she trusted in a God who was so much bigger than her circumstances and because of her loyalty to her people and her faith in God, the Jews were saved.

You should really read the Bible...there are awesome, true stories of faith throughout the whole thing!

 I think so often of this task, this assignment that has been placed before myself and my husband. It has been a long, hard journey and one that is not over yet. And yet, I would do it over and over again for our precious, Abigail, who is doing so well right now!

 We are still on weekly appointments with the liver team and frequent blood draws down at CHOP. Our latest appointment this past Tuesday brought such great news though. As I had mentioned previously, Abby's kidney numbers were slightly higher than normal and we were trying to figure out why her potassium was still so high. Last Friday, the numbers hadn't changed much and so we started two medications- one to help decrease her potassium numbers and a second anti-rejection med to protect her liver so that the first anti-rejection med could run at a lower dose.

 Abby is now on 12 different medications, but because of these meds, her labs on Tuesday showed a significant decrease in her potassium levels and a slight improvement in her kidney numbers!! This kid never ceases to amaze me! The plan for now is to keep our medication regimen the same and go back next week for another appointment and more lab work.

 The other exciting piece of all of this is the fact that we are going to begin trialing a more complete protein based formula for Abby. Because of the MMA, Abby's protein intake has been restricted to about 2 eggs worth of protein for an entire day. And it's just not meat protein- any protein!! Her body sees protein as an enemy to wage war on hence, causing so many issues to her little body. But, now that we have this new liver that has the enzyme capability to breakdown protein, we have seen her MMA levels drop from 1M to 100,000!! A 90% IMPROVEMENT!! When you stop and think about how the body works and the miracle of organ transplant, you can't help but think that something more than a big bang created our amazing, intricate human bodies!

 I love this quote that I have heard several times- "God doesn't call the qualified; He qualifies the called." Maybe you think that you won't ever make a difference. Maybe you think that because of your upbringing, God could never use you. Maybe you think that because you don't have a lot of money, you don't have the resources to help others. Stop. All that God is looking for is a heart...a life...a mind that is willing to say, "God, I don't have it all. But all that I have is yours. Use me in whatever capacity You see fit and allow me to make a difference for you wherever you call me to!"

 This line from the song mentioned above is one of my favorites- "Long before your heart could run the risk, you were born for this." Long before I knew what MMA was, God knew I would be momma to this incredible blessing. Long before I knew I would be a nurse, God knew I would raise a child with severe medical needs. Long before I met my husband, God knew we would need to live in PA near one of the best children's hospitals in the country. Long before my heart could stop and think about the risks associated with saying "yes" to adopting a special needs baby girl, I knew that I was born for this.

"'For my thoughts are not your thoughts, neither are your ways my ways,' declares the Lord. 'As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.'" Isaiah 55:8-9

---All photographs by Meg Brock Photography

Joy in the Journey

As a nurse, I have seen a lot...like A LOT!! Some stories are miracles and some stories are ones that I care not to remember. But, in each of them, I have been thankful to be a part of that family's journey. At 4:30am when the OR nurse told us we could head up to the PICU to see Abby, my stomach went to knots. I had been that nurse bringing a family back to a loved one right after surgery and watched the looks of fear, of relief, of sadness, of confusion, and of just plain exhaustion. Now I was that mom. 

 When we walked into Abby's room, I caught myself just staring. The tubes, the wires, the machines, the 10+ nurse and doctors, and my baby girl just laying there. The anesthesia was still very much present in her body and because of all the IV lines, drains, tubes, and wires she couldn't be covered up as everyone needed to be able to assess her. Thankfully, she didn't need the breathing tube after surgery and was breathing comfortably on her own. Dave and I stood off to the side as the team worked seamlessly to get all of her medications up and running and make sure she was okay.

Then, I held her hand. I whispered in her ear, "Mommy is right here. Your daddy and I are so proud of you. You are so strong. You are so brave. You've got this, baby girl. Mommy loves you." And the tears flowed. Today, I was her mommy...not her nurse, not her caretaker, not the one worried about all her pumps and the million doctor's orders...today, I was mommy. They say that sometimes knowing too much is a bad thing and I would agree. Being a medical professional and having a daughter with medical needs can be overwhelming- ignorance is bliss, right?! But, I am also so thankful for the knowledge I have in order to give our daughter the best care possible. 

As the days went on, tubes and IV lines began to be removed. Abby was still dealing with pain and being super itchy. She was also on high doses of steroids and was having issues maintaining her blood sugars. We left the PICU on Wednesday afternoon, 3 days after surgery, but by Thursday night, she was back in the PICU for increased sugars. We stayed in the PICU until Sunday afternoon, and again, transferred back to the regular floor. Through all of this, Dave and I took turns staying with her. The nights brought no sleep and the days were filled with endless doctors, orders, pricks and pokes, and lab draws. But by God's grace, we endured. She endured.

The plan was for us to be discharged on Tuesday, August 28th, 10 days after a major surgery. Abby was doing pretty well and we felt confident we could go. Then, her liver enzymes came back from her blood draw that Monday morning. They were elevated. This was indicative of possible rejection and so, Tuesday the team wanted to do a liver biopsy and more lab work in order to rule that out. Rejection can be common after transplant and the team follows closely to catch any signs of it early. The treatment is usually an increase in medications or a change in medications with continued blood work for monitoring. So, Tuesday morning, we headed off to her liver biopsy. And by 5pm that night, we had the results. NO REJECTION!! Her liver looked good, was functioning well, and was just trying to heal. We were blown away and so thankful. 

Wednesday morning, 8/29/18, Abigail was able to go home. 11 days after a liver transplant we were bringing our baby girl home. We were shocked. Abby did amazingly well and the only person we could attribute that to was God. He has an amazing plan for this little one and watching Him work in her life every day is a complete miracle and gift. Dave and I are so humbled that God chose us to be this little MMA fighter's mommy and daddy!

The Call

It was 3:30 in the afternoon on Saturday, August 18th- 8/18/18. I was working and Dave was home with the kids. I was busy caring for my NICU babies and he was busy caring for our babies. We knew "the call" would come, but after almost 3 months of waiting for that call, we became kind of immune to the fact that soon "the call" was coming. 

I had just finished up with my little NICU baby when I took a break to look at my phone. I had a text that said, "Call now. Emergency." My heart dropped and I immediately called Dave. The first thing I thought was, "Uh oh. Something happened to one of the kids." When Dave picked up he said, "They have a liver for Abby!" It took a second for that to register. "The call" had come. 

From 3:30pm on, it was a crazy, emotional rollercoaster. I called my charge nurse and told her I needed coverage as soon as possible while Dave frantically packed things for myself, Abby and himself and found childcare for Andrew. Thankfully, I work at CHOP and that was exactly where Dave and Abby were headed. In a matter of minutes, our whole world was turned upside down.

By 5:30pm, we were all together up in Abby's room where we were getting her prepped for surgery. The liver team met us in the room and told us the liver looked good on paper but they needed to go put eyes on it themselves before they said it was a go. So, we prepped Abby for the OR and waited. The team had to travel about 2 hours away and told us not to expect any news until about 8:30pm. And, there was always the chance that this liver would not work and we would be going back home. We prayed and waited. And during the wait, our friend and photographer, Meg Brock, was able to come and take photos to document our liver transplant journey. The following photos are thanks to her incredible work.

At 7:30pm, we went to pre-op and continued our wait. The nurses were so kind and so excited with us. Abby was not sure what was going on but was content to watch Daniel Tiger. Dave and I cried, prayed, chatted and prayed some more. Choosing to place your child in surgery knowing that the next few weeks ahead were going to be so painful  but the resulting rest of her life was going to be amazing was so hard to do. Abby never ceases to amaze us and we knew she would do the same in this situation.

At 9:30pm, we got the call. The liver was a GO! This was Abby's liver.

We were ecstatic and yet, the wave of emotions knowing that in our joy another family was suffering a heart wrenching loss was quite the emotional journey to navigate. 

From that moment on, things moved quickly. At 10:20pm, we said our "See You Laters" and watched as they wheeled our precious baby girl back to surgery. We knew the risks. We knew the possibilities. But, we were trusting an All-Knowing God and Great Physician for the outcome. We knew beyond a shadow of a doubt that that night, God was in the OR room with Abby and her nurses and doctors.

Sending your child to surgery has got to be one of the hardest things you do as a parent. This was our 4th time watching her be wheeled into surgery... and it never gets easier. Dave and I bunked in the OR waiting room for the night. We were the only ones in there. We ate some snacks. We watched some TV. We texted friends and family. And, since we had both been up since 4:30am, we tried to close our eyes. At 3:30am on Sunday, the surgeon walked into the room. "Surgery went beautifully," she said. "Abby tolerated everything great. We were able to connect the liver up perfectly to all of Abby's veins, arteries and bile duct. We were also able to take the breathing tube out after surgery. There really isn't much to tell you. Surgery was pretty much textbook." The wave of relief was overwhelming. Then it occurred to me. "Wait, the whole liver?" I asked. "Yes, Abby received a whole liver." the surgeon said. The ramifications of that single word "whole" sent Dave and I into another realm of emotions. That night as we rejoiced in LIFE being given to our daughter, another family was mourning the loss of their child... a child in similar size to our Abby. Because of the selfless choice of another mother and father in a devastating situation, our daughter was given the gift of life. 

 

 As we waited another 45 minutes for Abigail to be transferred to the PICU, I couldn't help but think about all the times in Abby's life where we have seen the sacrifice of selfless love bring about an amazing opportunity for Abigail. Her birthparents, 2 1/2 years ago, selflessly choosing to place her for adoption knowing that her life depended on it. Dave and I choosing as her adoptive parents to selflessly raise her as our own regardless of the medical outcomes in her life. And now, another mother and father selflessly choosing to donate life from their own devastation so that other children, like our Abigail, could receive a new organ and continue to have LIFE. 

Masterpiece

This may just be paint on a page to you...but to me, this is a masterpiece. Abby was able to go to toddler Sunday school for the first time last Sunday and she did arts and crafts!! This was a HUGE deal for us as every milestone Abigail achieves is a marathon achievement! And this little masterpiece on our fridge is proof of that!

As Abby continues to flourish, so does her raging MMA. We are now in the hospital every 4 weeks for a metabolic crisis with every stay causing her blood levels to drop a little lower and a little faster which is now requiring blood transfusions with every stay as well. This is rare in metabolic kiddos...possible but rare. And because of that, the medical team is nervous for Abby. So, we are quickly going through the evaluation process to get Abigail on the liver transplant list.

 We had our first set of meetings with the Children's Hospital of Philadelphia transplant team yesterday and both Dave and I were thoroughly impressed. I am going to do my best to present the highlights from our meetings, what the next steps look like, and how the process will work.

 As many people know, the transplant list comes with staging of the patient and different scores based on the severity of the patient's illness. Scores are different for adults and children with children usually scoring higher than adults due to being children. However, because of Abigail's severe metabolic disorder she will automatically be placed at what is known as level 1B. This level is reserved for children with known metabolic disorders or failing livers. There is no numerical score associated with this level. To give you an example of just how high she will be listed- if a liver is found that is compatible with Abigail's needs, it is first offered to someone who is basically dying and in need of a liver right away. If no one from the region or nation needs that liver right away, Abigail will be next. Though there will probably be a wait, it will not be a long wait. And yes, just like the movies, we need to have our cellphones charged and on at all times because the call for her liver could come at any time. 

 Once Abigail's liver is found and matched, we will be admitted to CHOP where she will be prepped for a 6 to 10 hour surgery. Abigail's donor liver could come from a deceased child, a deceased adult, or from a living adult donor. From the adult, a partial portion of the liver is removed and given to Abby yet, that portion will grow and function like a normal liver. What an AMAZING God we serve! When surgery is complete, Abby will spend 1 to 3 days in the Pediatric Intensive Care Unit where she will be monitored for many different things. Once she is stable, we will be transferred to the regular floor where we will probably stay for another week to 10 days. Overall, the stay will be about 2 weeks. 

Abigail's journey does not stop there though! Once home, we will have follow up appointments weekly for a month, then biweekly for a month, etc. She will be placed on medications to keep her immunocompromised so that her body does not try and fight the new liver as a foreign object. She will remain somewhat immunocompromised her whole life, but most significantly in the first 6 months to a year. We are to maintain strict control of her medications and keep her from any viral infections. And, while the benefits of a liver transplant outweigh the risks, there are still very real risks that come with a liver transplant that we will be monitoring for closely.

As Dave and I sat and listened to everyone come and share their piece of the journey and how they will be helping us along the way, we were overwhelmed with emotions. Yes, this is a very scary unknown journey. Yes, there are risks we don't like to think about or discuss. But, yes, we serve a good, good God who is creating a beautiful masterpiece out of these fragmented, frail pieces of our lives. Some of the things we found out that were huge encouragements to us were:

1) We qualify, by 1 mile, to live in the Gift of Life house in Philadelphia while Abigail is getting her transplant. Gift of Life is the organ transplant organization and this house is where families can sleep, eat, and live while their loved one is getting a transplant. Because of Abby's Medicaid, we will be able to stay there for a very small monetary amount and all dinners and shuttles as well as hotel type lodging are provided to us.

2) Abigail will be given a Make-A-Wish once she is post-transplant. Our wish is that we would be able to take her back to her home country of Beijing, China and the social workers seemed to think this was a very feasible wish!

3) Because of Abigail's Medicaid, her $1.7 million dollar transplant stay will be completely covered! How blessed we are to live in a country that affords us this kind of healthcare coverage!

In the midst of these incredible blessings though, we still have some needs that will need to be covered. We will be beginning a fundraising page through the Children's Organ Transplant Association, or COTA. We will have more information about that later. We will also need help with childcare for Andrew and possibly some in-home help once Abigail is home. Again, keep an eye out for another blog that will address these needs and how you can help! Many people have asked how they can help and we are so very grateful! 

This morning as I prepared to head in to the hospital for yet another stay for our precious Abby, I broke down in tears. This is tough. This is hard. This is never what you desire for your child. And yet, we know it is for her good. We know we are making the best choice we can make for her and we know the outcomes are very good. But, in my frail, weak self I have a hard time thinking of all she will go through to get there. 

As I listened to the words of Danny Gokey's song, "Masterpiece", it reminded me that God sees the finished picture. He has a plan and though right now all I see are the frays and mismatched yarn on the back, He sees the beautiful tapestry on the front. Trusting His heart as we begin this liver transplant journey with this beautiful child He has given to us.

"Heart trusts you for certain
 Head says it's not working
 I'm stuck here still hurting
 But you tell me

 You're making a masterpiece
 You're shaping the soul in me
 You're moving where I can't see
And all I am is in your hands
You're taking me all apart
Like it was your plan from the start
To finish your work of art for all to see You're making a masterpiece"

Thy Will Be Done

Our MMA fighter.

We knew this day could potentially come but we prayed it wouldn't. From day one, this kid has been a fighter!

For those of you that don't know our story, it is told throughout this blog! Feel free to leave this one and head back several posts to see where this journey all began!

Abigail has Methylmalonic Acidemia or MMA. In short, MMA is the byproduct of protein that is not broken down within the body. Abigail was born without the genetic makeup to create enzymes that breakdown protein. From the day of her birth, Abby has been fighting for her life because of this. Because Abby is unable to breakdown protein, she is on a long list of medications and has a special feeding tube called a G-tube where she is fed specialized formula for 18 hours a day.

Abby's short 2 1/2 years of life has consisted of more hospital stays than I can count. We average about one a month with some months having several stays back to back. This is because methylmalonic acid is toxic to the body and when the acidity in the body gets too high, major organs can become permanently damaged and begin shutting down. Thankfully, we have caught every episode before it has gotten to that point.

However, the MMA is beginning to affect Abigail's bone marrow. The bone marrow is where the different components of our blood is made. Abby's bone marrow becomes suppressed with every metabolic episode she has. Because these episodes are becoming more frequent, Abby's bone marrow doesn't have time to fully recover before getting hit again. And after two blood transfusions in the last 8 weeks, the doctors are beginning to worry that we may hit a point that her bone marrow won't recover.

So, why a liver transplant to fix this?? Good question! The liver is where the enzymes are stored that breakdown protein. Unfortunately for Abby, because her body does not have the genetic capability to make those enzymes, her liver has no enzymes in it that breakdown protein. But, when we take out her liver and place a liver from a healthy person without MMA inside her body, that liver begins using its enzyme store to breakdown the protein molecules within Abby's body. This will then decrease the MMA levels in her body and allow the organs that are failing because of the high levels of MMA to begin functioning again. 

I know you all have several questions, so let me try and answer a few here.

Is this a cure?

No, this is not a cure. Because this is a genetic issue, Abby will always have MMA. However, with a properly functioning liver, it decreases the chances of major problems to Abby like deafness, blindness, weakening heart muscles, strokes and seizures to greater than half the chance she has now. We should also see a drastic decrease in hospital admissions because the body won't be becoming acidic as often and we should see her desire to eat increase.

How quickly will she get a liver?

We are still in the beginning stages of this process and have many appointments, blood work, and imaging studies to do before she is placed on the transplant list. This process will probably take 4 to 6 weeks. Once we are through this process, she will be placed very high on the transplant list. High enough that the goal would be to have a liver for her within a few months. 

Can I be a donor for Abby?

Yes and no. Dave, my husband and her dad, is a possible match due to the fact that they have the same blood type. The process to become a live donor is an extensive one but feasible. The biggest component they look at when matching livers is blood type. But, yes, Abby can receive a partial liver transplant from a live donor.

Where will the transplant take place?

Abby's transplant will be taking place at the Children's Hospital of Philadelphia. She has been followed at this hospital almost her entire life and we know she will be in good hands.

How long is the recovery process?

The initial recovery will be about one to two weeks in the hospital with the first 3 days after transplant being spent in the Pediatric Intensive Care Unit. Abby will be very well monitored to make sure her body does not reject the organ in the first few days. She will be placed on medications to helps her body accept this new organ and will have several follow up appointments post transplant.

This is a long and scary process but one we know must happen in order for Abigail to continue to thrive. She has shown us already in her short little life that she is a fighter and continues to beat the odds. We are asking that you all pray with us as we embark on this journey. My hope is to keep everyone up to date about the process via this blog. 

Next step...lots of meetings!!