It’s hard to believe, but we have been home from the hospital with Claire four days now. It’s been bitter-sweet and a bit chaotic of a homecoming, which is why I have not posted anything until now.

We no sooner unpacked our hospital bags, when a family member who was gracious enough to watch the boys for a couple days while we were in the hospital, called hesitantly to inform us that they had possibly been exposed to COVID-19. My nervous system shocked itself right back into panic and worry mode, as I frantically tried to come up with a solution to this new problem with Justin. He grabbed my shoulders (as he always does when he attempts to snap me out of it) and with a small chuckle (because if you don’t laugh you’ll cry at this twisted turn of events) said, “look at you Alisia. You just got done worrying about Claire’s surgery for the past seven months and the second its over you begin letting your mind torture you over something else to worry endlessly about.”

Now, in my defense, and I think you all would feel the same here – my other two children possibly having Corona, and the thought of them bringing it home to my third child who is fresh out of an intense surgery, would halt anybody in their tracks. “Are you kidding me, God? Right now!” I lashed out. I thought I wouldn’t have the strength to handle Claire’s surgery, but I did. Then, I questioned my emotional strength to make it through our hospital stay as I watched on helplessly, doing the best I could to soothe her. I came home exhausted and needing, no feeling that I rightfully deserved, a day or two of reprieve.

And then, I remembered the Apostle Paul. Known formerly as “Saul,” Paul was a major persecutor of Christians who himself converted to Christianity after an encounter with the resurrected Christ. He would become one of the most influential leaders of the early Christian Church and was a man who knew suffering well. Paul was beaten three times with rods, stoned, shipwrecked, imprisoned and experienced a multitude of other sufferings, Yet, through all he endured, Paul’s directives in a letter he wrote to the Philippians was this:

“Rejoice in the Lord always. I shall say it again: rejoice! Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.”

I may feel like Paul at the moment, suffering one blow after another. But, if I can recall Paul’s words of wisdom and then practice what he is advising by making a conscious effort (hard as it may be right now) to truly rejoice in the lord when what I really feel like saying instead is, “why me?” Or “why now?” It can and will “bring me peace that surpasses all understanding” and circumstance. It may not work every moment of the day, because Lord knows I have had my bouts of self-pity and exhausted tantrums over the situation of not being able to bring my boys home; but there is peace to it and that peace I will continue to pray for, with thanksgiving to God for the work He has done and will continue to do.

So, where do we currently stand with seeing our beautiful boys and re-uniting them with their sister?

Because the results from the COVID test our family members took came back positive, my parents (who took the boys later into our hospital stay) have agreed to keep them until we can safely bring them home. The silver lining to be found in all of this, because they are getting some uninterrupted quality time with Nanny and Grandpa they wouldn’t normally get. We have a referral for them to both be tested at Children’s Hospital on Monday and are praying for a negative result.

We will of course still take conservative measures whenever it is they are welcomed back home. I desperately need to hug and snuggle my boys though, and I know they would benefit greatly from some much needed time with Mom and Dad and a good nights sleep in their own beds.

I titled this blog post, “Sometimes we need a great storm in order to have the chance of seeing an even greater warrior” and I can now truly appreciate this trial we have been through. As I mentioned in my first post I wrote “Where our journey began,” after being baptized and accepting Christ into my life I really did not know how well I would be able to anchor myself to Him when life dealt me my first real storm. As that storm passes and another one rolls through right behind it, I feel grateful (in a way that is hard to understand or articulate) for everything we have been through recently. It brought God so near to us, in a way that only a crisis like this could, and for the first time I was able to see God as the Great Warrior that he is.

My favorite stories in the Bible have always been ones involving water and by far my favorite is the story of Jesus in a boat with his disciplines when a raging storm appears. In Mark 4:37-41 it is written:

  But soon a fierce storm came up. High waves were breaking into the boat, and it began to fill with water.

 Jesus was sleeping at the back of the boat with his head on a cushion. The disciples woke him up, shouting, “Teacher, don’t you care that we’re going to drown?”

 When Jesus woke up, he rebuked the wind and said to the waves, “Silence! Be still!” Suddenly the wind stopped, and there was a great calm. Then he asked them, “Why are you afraid? Do you still have no faith?”

  The disciples were absolutely terrified. “Who is this man?” they asked each other. “Even the wind and waves obey him!”

Whatever you’re going through right now, there is a storm greater than the one you’re facing now, and His name is Jesus Christ. He is the sovereign storm over heaven and earth to whom every storm in your life humbly yields and submits.

I am finding peace and comfort as I allow myself to surrender under these recent, uncontrollable circumstances; circumstances that have whispered in the past to me, in my deafening thoughts of fear and doubt, “You cannot withstand this storm.” Except now, I find myself recalling the response, “I AM the storm.” 

** God is referred to by many names in the Bible, one of which in fact is  “I Am.” 

God Bless each and every one of you. Claire is doing absolutely wonderful! She is back to exploring every nook and cranny of our house, putting everything in her mouth and babbling away. 

I will be sure to post a joyful picture of our family once we are all united and together again soon! Thank you for continuing to lift us up in prayer, and please, if you need prayer for anything, we would love to pray for you and lift you up just the same!

With Love,

Alisia

Yesterday was super rough. Oddly enough, it started out with some exciting news from the surgeon that based on how incredibly well Claire is doing (she was down to just Tylenol for pain relief and moving all over the place), we may be discharged. All Claire had to do was poop and we’d be on our way.

How exciting! Let’s start cleaning the room up, packing our stuff and enjoy Claire as she crawls around the room, back to her old curious self. And then… She projectile-vomited like we haven’t seen since she was two months old and this whole journey began. To say it wasn’t a bit traumatizing would be a lie and from there the day just seemed to get worse and worse with her throwing up anytime we tried to feed her the Tylenol for pain relief, then a procedure that was supposed to help her poop, that had both Justin and I in tears afterwards it was so hard on her.

We were both stressed and frustrated by the situation and pent up with all this emotion from the week. Our exhaustion from the emotional ups and downs, combined with being confined in this tiny hospital room began to get the best of us as we lashed out at each other.

Remember in my last post when I said I would, “look up in faith rather than lash out in fear?” Well, let this be an example for how hard it is to live a life of faith and to put complete trust in Our Maker. We are all flawed, imperfect humans with an array emotions; and though we know and really want to live with grace and patience and love, we sometimes (no a lot of times) fall short! I went to bed last night feeling a lot of guilt and regret and also just a deep sadness for what I had witnessed Claire have to suffer through.

A friend of mine, who is a fierce, God-loving woman, sent me a beautiful picture this morning of her beach sunset with this text: “His mercies are new every morning. Praying prayers of peace, healing, comfort and joy for your sweet Claire.” Her beginning words come from Lamentations :22-23 which says:

22 The steadfast love of the Lord never ceases;
    his mercies never come to an end;
23 they are new every morning;
    great is your faithfulness.

These words were exactly what I needed to hear and remind myself of as I woke up this morning and she knew exactly what I needed prayer for without knowing it: peace and healing from the awful day yesterday, comfort in believing and knowing I am the best Mom for Claire and I am serving her well in this battle and joy in the promise of a better day today.

So is today any better, yes and no. Claire just threw up in a pretty scary moment while Justin was out getting lunch and I am struggling with not knowing why. We still are yet to see a dirty diaper (man I’ve never wished for poop so much). But, today I feel renewed in peace and comfort and joy that only comes from asking the holy spirit to provide our daily bread needed for today and only today.

May you all experience God’s love today, feeling his presence known through all the highs and lows that today may bring.

Alisia

Update: Since writing this earlier today, Claire had more help from the medical team here at Children’s and we have poop – Praise the Lord! We are hoping for a ripple effect that now that her digestive track is moving, she will be able to hold down all her feeds! She will get another x-ray tomorrow to make sure everything in her system is moving as it should and as long as she’s not throwing up we will be heading home!

It’s been almost a full day since my last update on Claire and I feel like I’m looking for the first time at pre-surgery Claire again! It’s amazing what a difference a day can make.

After Claire’s NG tube was removed last night, she began incessantly itching her nose and face. She rubbed and scratched for hours, until about 2am when she finally exhausted herself and I climbed in the tiny hospital crib to sleep next to her and hold her arms down until she could let go and fall asleep. The itching is from the morphine she is receiving for the pain and is a horrible side effect to watch.

With a new day comes new hope, and this morning brought just that when Claire finally got to eat. It was the absolute tiniest amount of milk (think the little bit you give a newborn on day one); but, it was something, and you can tell even that little bit filled her with such comfort. After working her way up little by little, she has now graduated and I just nursed her for the first time since Wednesday night which brought more joy and comfort to both of us.

Other major wins for today:

• Claire’s Morphine pushes (administered by Justin and I) are down to practically nothing – the goal is to have her off the Morphine by tomorrow
• Claire sat up on her own today, using her stomach muscles
• She began babbling, blowing bubbles and playing with us
• She finally, just shy of me writing this, smiled her squinty, adorable little smile at us

I’m now smiling again for the first time in what feels like forever. Justin is smiling again, and if you can believe it, he even did a little celebration dancing with me and anyone who know Justin, knows, he does not dance! We are only on day two of recovery and so we have still more to go. Claire has a long way to go as far as her food intake. She has also not passed gas or had a bowel movement yet. All Moms quickly find how obsessed we can be with our little ones BM’s but add to that a baby with liver or gastro issues and you just multiplied that worry exponentially.

But, for now, we celebrate! We thank God for answering so many of our prayers and we continue to position our hearts towards Him.

I love worshiping through music and so I thought, like yesterday, I would share another song that has helped me praise God in small victories like today, but even more in darker times like so many days past. It’s Bethel Music’s “Raise a Hallelujah,” and it’s a great one to blare in the car when you sometimes need to just scream out and proclaim “I will not let this destroy me. I will look up in faith and praise you Lord, even when the enemy would prefer I lash out or crumble in fear!”

Love and Blessings to all our family and friends tonight and I will continue to say it.. thank you, thank you, thank you!

Justin and Alisia

“Rejoice always, Never stop praying. Be thankful in all circumstances; for this is God’s will for you who belong to Christ Jesus.” 1 Thessalonians: 16-18

We knew the first 24 hours post-surgery would be hard, we mentally prepared ourselves for how crushing it would be, in the deepest parts of our souls, to see Claire in so much pain and confusion and rendered unable to rescue her from it. So, as I spent time this afternoon bringing my frustrations and feelings of grief and helplessness to God, I realized that as hard as I try to be her savior in all of this, and as much as I want to take away the pain in her eyes and the tears running down her cheeks, I simply cannot. Justin and I can rock her all day and night in our arms (she screams every time we try the crib), play her favorite rain sound from her nursery sound machine and whisper in her ear her favorite lullaby to bring her comfort, but we cannot save her from the pain she must endure and the battle her body must fight.

Claire does have a Savior, however, and his name is Jesus. And even though she is only 9 months old and it is unclear how much of this she understands or will even remember, I feel strongly that God is drawing near to her in this difficult time, that He is holding her in His loving arms and that deep inside she is experiencing His protection, His grace, and His blessing of a life for her full of purpose and prosperity. Elevation Worship released a song, “The Blessing,” a few months ago that has gone global during this pandemic and I have played on repeat the last couple of weeks. Lyrics from the song come straight from the Bible, where in Numbers 6: 22-26 it says

²² Then the Lord said to Moses, ²³ “Tell Aaron and his sons to bless the people of Israel with this special blessing:

24 ‘May the Lord bless you and protect you.
²⁵ May the Lord smile on you and be gracious to you.
²⁶ May the Lord show you his favor and give you his peace.’

I can find peace in today, worshiping to this song and recounting (sometimes several times throughout the day today) the many blessings God has shown through Claire’s medical journey, in the past 24 hours and the blessings he will shine upon her for years to come. I am also witnessing the breadth of my daughter’s strength and courage as she is rocking recovery right now, with comments from the surgeon, nurses and pain team that come in to check on her, saying “Wow! she is so strong!,” “Her belly and incision look great!,” and “I am so happy to see she can already move around like that!”

But we already knew she was strong. She’s been that way since birth. She is to us, “A princess, with the strength of a warrior.”

Update since I began writing this: It is 6:58pm and the nurse just came in to remove Claire’s NG tube which was causing her the most irritability. We spent all night and day holding her arms down because every second she could, she was trying to pull it out of her nose! What a win worth celebrating! Prayers for this evening:

1. That she doesn’t throw up, enabling her to keep the NG tube out of her nose and stomach
2. That Justin and I get a longer stretch of sleep tonight
3. That the morphine is effective in providing Claire the pain relief she needs to calm down enough to rest

Claire is out of surgery and our surgeon reports that it was a huge success! Praise God, He is good!

As I write this, Claire has finally settled herself to sleep in my arms (thanks to the Beatles lullaby album) in recovery. It is hard to know at her age if her unsettledness is due to hunger or pain. She is being given electrolytes through an IV but won’t be permitted to eat until tomorrow evening at the earliest.

It hurts me deeply to see her cry out, but I Justin is good at reminding me that “this is rock bottom and it is only up for her from here.” At the same time I am overwhelmed with a sense of hope and joy. We can celebrate now our first victory! And it’s a big one, as we have waited seven months for this surgery and the healing it will provide!

Specific prayers needed right now:

– For pain relief and comfort from hunger

– For good fluid output into her NG tube

– Her to avoid any post-op complications or infection

I really cannot express in words how grateful we are for every person who has reached out to us, prayed on her behalf and just lifted us up with encouragement and support. Seeing all the love that has been poured out by so many, reminds me that though our world is broken (and 2020 has made that glaringly obvious) Love will always remain.

I can choose fear, or I can choose faith… and I choose faith. Faith in a sovereign God, faith in mankind and faith that given the choice to choose love or hate… love reigns supreme.

So keep that love coming! And may you feel our love coming right back at ya!

Claire was diagnosed with Choledochal Cyst Type IVA at just 2 months of age. But what in the world are Choledochal Cysts and why have I never heard of this? 

For starters, choledochal cysts are extremely rare, especially in Western countries where only one in every 100,000 to 150,000 children are born with them. The condition is more common in East Asian countries, especially Japan, though researchers don’t know why. Girls are four times more likely to be affected than boys.

A choledochal cyst is a congenital anomaly of the duct (tube) that transports bile from the liver to the gall bladder and small intestine. The liver produces bile to help digest food. When a child has a choledochal cyst, a swelling of that duct, bile may back up in the liver.

Sometimes choledochal cysts can be found during ultrasound, but often children can go without symptoms or diagnosis until much later into childhood and sometimes even much later in life. To us, the events that led up to Claire’s diagnosis truly were the work of God’s protection. Her violent vomiting that Claire experiences at 7 weeks old, put her right in a small age range for another illness “pyloric stenosis” which is what prompted the doctor to send us for ultrasound in the first place. If Claire had been just two weeks younger or older, she would have missed that window and thus no ultrasound would have occurred.

If the ultrasound tech who was supposed to only be looking at her stomach on the scans hadn’t decided to look outside of her scope of work, the issue in her Liver never would have been realized. 

Claire could have ended up like so many other babies and children I sadly read about on the Facebook support group I found that lived for years with stomach pains that sent them repeatedly to the ER only for it to be explained away by “Colic,” or “IBS,” or so many other stomach issues. She could have ended up not only with a life of pain for who knows how long, but with irreversible liver damage or worse failure to her liver and/or pancreas. 

The craziest part of all this, her vomiting that led us on the path to her discovery was completely unrelated to her cyst diagnosis. Turns out she did have the stomach flu and since that weekend fighting off a stomach virus, Claire has been in complete health ever since. She made it through the winter with not even a sniffle or cough and anyone who has children, especially little ones in school like her brothers, knows how many germs come through your home during the winter. We all took our turn with one sickness or another, but Claire remained sickness free. I viewed that protection as an answer to my plea for God early on to reveal himself in the midst of all of this and to show me in some way that Claire had His protection. I believe He answered, and that sign from above continues to fill me with a sense of peace that even as she undergoes a very difficult surgery – she will remain under God’s wing of protection and care.

Psalm 5:11 

“But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you.”

As I write this, Claire is just over a week away from her surgery which will take place on July 16th with the absolute best liver surgeons at one of the BEST Children’s hospitals this country and world has to offer. Her surgery will take between 4 to 6 hours and will include a complete removal of the cyst, her gallbladder and biliary tree, followed by a reconstruction and repair of her digestive system using a section of intestine. She will spend 5-9 days in the hospital recovering from surgery, and even though many hospitals are not allowing loved ones to stay with patients during surgery or recovery, Children’s hospitals allow two caregivers to be there the entire time; both Justin and I will remain by her side during her entire post-op.

What will her future look like? While choledochal cyst removal will reduce the risk for bile duct cancer, Claire will be at higher risk of developing cancer in the remaining bile ducts inside the liver compared to the general population. For this reason, they will take a very small portion of her liver during surgery to have a baseline of her liver function. She also has the risk of experiencing narrowing in the reconstructed bile duct, which can lead to complications such as cholangitis, intrahepatic calculi (stones) and pancreatitis.

Claire will have yearly follow-ups to monitor for these possible complications. She is a fighter though, and whatever lies ahead for this resilient, little girl, she will face with strength and dignity and without fear of the future!

I remember the morning at church I decided to be Baptized; feeling a relentless tug inside that today was the day to do it and knowing without a doubt that God was calling me into new life with Him. I’m not the first person to say that I honestly felt a shift inside from the moment I came out of that water, and as I proclaimed myself a believer in Jesus Christ as my Savior and King I remember in the back of my mind thinking, “will my faith stand the test of time? How will I react and who will I in fact turn to when darkness rolls in and I find myself in the valley instead of high on the mountaintop?”

My valley came (they always do) two months after our third, bonus baby Claire was born. Claire was everything we never new we wanted and so, so much more! Her birth was absolutely magical (another story for another day) and from the moment we brought her home our family felt complete. There were so many tender moments between Claire and her doting brothers, and my biggest concern at the time was if I’d be able to get her on a good sleep schedule with all the driving to and from school and sports I was doing for the older two.

Justin and I hosted my family for Thanksgiving and everyone kept commenting on how much Claire slept that day and how good of a baby she was. It was during her night feed late that evening that Claire got violently ill out of seemingly nowhere. The next morning she threw up again (like A LOT of throw up). I called the doctor and since our pediatrician wasn’t working we saw a newer doctor who upon examining her explained that he was pretty sure it was a stomach bug, but that there was another slight possibility of a condition called “pyloric stenosis” that can present itself between 6 and 8 weeks. He suggested we get an abdominal ultrasound just to be safe.  We debated going downtown to Children’s because it was Saturday and I thought, “why not just wait until Monday because if it is a virus, which it sounds like it most likely is, it will have run its course by then. If not, we can call and speak to our primary pediatrician and see about getting and ultrasound then.” We debated for a short while, but in the end decided we should go. A couple hours later we were done with the ultrasound and told we could leave and that we’d hear from our pediatrician with the results of the scan. Just pulling out of the hospital, my phone rang and when I realized it was the pediatrician from this morning and registered the solemn tone in his voice my stomach dropped into my knees immediately as my eyes flooded with tears before he even got his first sentence out. I don’t remember much of the call but I was able to grasp onto, “not pyloric stenosis,” “cysts in the liver biliary tree,” and something called “billiary atresia.” The doctor hung up, called back before we had even reached our driveway and explained that he was able to get us in to see the Liver Specialist at Children’s on Monday afternoon.

Two days later, as Claire’s symptoms intensified, we found ourselves talking with a liver specialist about the two possible diagnosis for what was showing in the ultrasound: the first – “Choledochal Cyst” and the second – “Billiary Atresia.” I’ll spare you all the medical details, but walking out of the hospital that day we were processing two different diagnosis; the second of which had us looking at a major surgery that week (if her symptoms got even slightly worse) and then a Liver Transplant in the very near future.

With our hearts racing and heads spinning from the information bomb that was just dropped on us, we still had to drive over and explain to both our parents in private what was going on, grab the kids and then drive home feed them dinner and go about bedtime routine as if our world had not just come crashing down around us. The next 72 hours were undoubtedly the darkest moments of my life. I sobbed into my husbands arms as I contemplated every parent’s worst fear and every possible scenario for how this could play out. I screamed in terror for Justin to come help every few hours as Claire continued to projectile vomit with a look on her face I will never unsee. I would rock Claire to sleep at night and beg God to answer, “what is all this for? Did you really just give us this child only to rip her away?” I was angry. I was confused. I was terrified to hear the further test results that would give us her exact diagnosis. I understood for the first time in my life why there is a saying “sick with despair,” feeling constant nausea and finding it almost impossible to uncurl from the ball I had shrunken myself into on our bed, as if that could in some way shelter me from the waves of fear that kept ripping into me each time I spent just a few moments thinking about something else only to be sucked back into the reality of the situation.

But, as dark and as scary as those first few days were, and as loud as my fear cycle in my head was, God did show up… and He was louder. His presence was so close in those days that followed that Justin and I felt an odd sense to just succumb to the emotion and gravity of it all. We prayed in every way we knew how. We prayed together and read the Bible out loud with each other more than I think we have done in our entire marriage.  Again, sobbing in the bed one day I was listening to my Christian radio station I love when Lauren Daigle’s song came on, declaring “I will send down an army, to find you in the middle of the darkness…I will rescue you!”  I’ve learned through my faith journey that when God speaks to you, for most people at least, it isn’t an audible voice, but rather a song or image, a thought deep inside that you know you wouldn’t normally have, or a message you hear over and over again pertaining to you. I have no doubt that God was calling out to me that day as I lye their broken-hearted and helpless. Jesus came to rescue us from our sins long ago and in all our humility and despair He continues to come to rescue us even today.

We witnessed the Army Jesus sent us for this battle we would face, through the many friends who brought us a warm cup of coffee, hot meals to feed our family and those who called or just showed up to pray with us and over Claire. If you’re in a valley in your life right now, facing uncertainty, battling illness or fear for the future; I pray you will know the Father I have come to put my faith in. He is a God who comforts you when you are weary. A God you can caste your burden’s on and who will strengthen you for the battles that lie ahead. But most importantly, He is sovereign; so even though my world can feel like it’s completely out of control, I know and can trust The one who is.” He freed a nation, parted the sea, and sent His only son to die the most violent death so that our sins would be forgiven. To know that Claire has an Almighty Father who set her apart and loves her countless more ways than I (hard to imagine possible), gives me faith in whatever journey is to come!

A week later — One small miracle came. A phone call from the doctor telling us that Claire does not in fact have Billiary Atresia, but the much more rare diagnosis – Choledochal Cyst. Oh and by the way, as it turned out – her violent vomiting which led us on this path to discovery was completely unrelated. Claire did in fact have the stomach flu.

We will take good news where we can get it and will rejoice in the Lord’s blessings, no matter how great or how small they may seem at the time.