2016: Wow…. what a year it has been for us.
Heartbreaks and Happiness, Trials and Triumphs, Struggles and Smiles. God has taught us many things – a few are: prayer is powerful and effective, we have the best family and friends in the world and that with Jesus, we never walk alone, no matter how dark or long the road may be and that hope is never lost because God can step in at anytime, any moment, any situation and change the story and miracles still happen – we get to see ours every morning. We are so thankful and content this New Year’s Eve as we have everything that matters. We pray you all find the same in your hearts.
Happy new year 2017 from the Thomases.
Dec 23rd: Joshua Luke Update: Best Christmas Gift Ever
We are so excited so share that Jesus gave us the best gift this Christmas. We will never forget. After extensive tests today at CHOP, Joshua Luke was given a clean bill of health. There is no fluid in his lungs. None. His oxygen is the highest we have seen, 96%. He’s eating again – slowly gaining back some weight.
Our hearts are overflowing with joy- knowing that God had mercy on our warrior prince. And you all, friends, were a part of this miracle. So thank you again from the bottom of our hearts. The miracle stands. This Christmas, if your heart is burdened about anything, choose to believe God and take Him at His word. I am reminded today what my friend told me long ago – “Don’t doubt in a moment of darkness what God told you in the light”.
Despite how blessed we feel about this gift and miracle, all of this pales in comparison to the “BEST GIFT EVER” – Jesus came to earth to save us. To give us freedom from Sin and give us Eternal Life. Christmas is about the greatest gift you were given. You are loved. You have a purpose. You are unique. You are cherished. You are treasured. Life and circumstances can sometimes drown out this truth but I want to tell you today, God loves you and He gave His best gift ever for you. He made a way through Jesus Christ and the Cross for you to find love and find it eternally.
We say we love you all as you walk this journey with us. It wouldn’t be true if we didn’t share this most important thing in our life with you all.
Dec 14: Joshua Luke Update: … But God
Ann and I could not wait to share the BEST news we received yesterday with you all. Joshua Luke’s lungs are clear for the last 10 days. Thank you, thank you, thank you – to everyone who prayed with us on Friday, Dec 2nd, from 8 to 12 Noon. Hundreds of you locked arms to ask for His mercy on Joshua Luke. He heard us. Joshua Luke turned around immediately after 12 Noon that day and his fluid flow into his lungs dried up. We have so many emotions still going through our hearts and minds. It’s good to have our warrior prince home and recovering. Please continue to pray that he would gain weight and his appetite would come back fully and this Christmas he would recover physically and emotionally back to 100%. We love you all and cannot fathom or imagine walking this journey without you. We will update soon again in a few days!
From Jinu’s heart: I have to share a little on what’s on my heart this morning. FAITH is an interesting thing in our lives. It is impossible to carry all our human feelings and burdens we have here on earth and not have FEAR chip away at our FAITH. It is ok to sometimes have doubt fill our hearts for brief moments but Ann and I have learned, through this journey of 3 years with ups and downs, that God can step-in at any given moment and change the trajectory of what is happening in our lives. We call it our “..But God” moment. Dec 12 was our “But God” moment. The Bible is full of “But God” moments. Despite how the circumstances look, we can have full confidence and continue to pray that God can step in and change everything. It doesn’t mean He always will – that is in His hands, but we know He always does hear us and answers us and sometimes it is the answer we were hoping for. In fact there is an amazing book by Herbert Cooper with the same title (Link). Here are some ways that “But God” might be a part of your story.
– We Wander … But God Finds Us
– We’re Wounded … But God Heals Us
– We’re Insecure … But God Gives Us Confidence
– We Search for Identity …But God Gives Us Purpose
– We Lose Our Way … But God Guides Us
– We Seek Relationships …But God Gives Us Divine Connections
– We’re Bound … But God Sets Us Free
– We’re Tempted … But God Delivers Us
– We Don’t Have Enough … But God Provides for Us
– We See Impossible …But God Makes All Things Possible
I want to encourage you today, as you have encouraged us with your prayers over the last 3 years, don’t ever give up hope. God is not done yet. He is still writing your story. He loves you too much to be absent in your life. He might seem silent but Ann and I have learned this: you will NEVER walk alone if you have chosen to believe. You have what it takes – not because you need to muster everything in you to show courage – but because someone is standing by you. In those toughest moments life throws at you, remember …. BUT GOD…
Dec 5: Joshua Luke Update: Never Give Up
Amazed and in awe. God has heard our prayers and we believe has healed Joshua Luke of the fluid in his lungs. Since the day we all joined as one and stormed the heavens, the fluid steadily decreased. The doctors were surprised and have been watching him closely but to everyone’s amazement, Joshua Luke has only improved with each day since. They decided to remove his chest tube today and send us home. (Insert happy dance).
Yes, in fact, we are on our way home from the hospital as we write this update. We wanted to share and celebrate this moment with you all who believed with us despite the circumstances and took time out of your lives to stand with us in prayer and believe.
Is it ever the time to BELIEVE. If you have been believing for something in your life – don’t give up – God hears every prayer and sees every tear. We are loved and held by an amazing, all powerful, sovereign and loving God.
Please continue prayers for full and complete recovery for Joshua Luke. The transition to being home again has been difficult for him after past hospitalizations. He has nightmares and the change must be overwhelming. This time may be more challenging as we have been in the hospital for the longest than ever before. Also please pray for his appetite to increase. He has lost so much weight. We have his follow up cardiology appointment in two days to confirm that he continues to improve. So please pray for complete healing and full recovery.
Near and far- Thank you, thank you, thank you – friends, family. We love you all. ❤️
Dec 3rd: Joshua Luke Update: Prayers are working – more to go
Hundreds of you and your friends from churches and Facebook locked hearts with us to pray for Joshua Luke yesterday. And it worked. God has answered and the fluid in Joshua Luke’s chest has reduced significantly – to the surprise of his entire medical team. We shared with them that people all around the world are praying for that the fluid stops. They may not understand but they see the turn around in his condition.We know that Matthew 19:26 is true: “And Jesus looked at them and said with man, this is impossible but with God all things are possible.”
He still has the chest tube in place and he’s draining but much less than he has since his surgery at the beginning of October and much less than he has in the past week. The change is significant and noticeable by all. Of course they are being cautious and watching to see if it continues to decrease before making any decisions or changing any management.
He is still happy and playful and his pain has mostly resolved for now. He still takes his tours around the hospital with his pink car. He made a new friend while visiting his favorite fish tank who has also has an interesting mark on his body also. He always finds joy in the midst of his challenges. So much to learn from this warrior.
Please continue to pray for absolutely clear lungs, increased appetite (recently decreased), wisdom for his medical team and strength, wisdom for us as we care for Joshua Luke and the path forward.
Thank you Jesus, for hearing our cries. Thankful for mercy today. Joshua Luke thanks you and loves you all. ❤️
Dec 1: Joshua Luke Update: It’s been a hard 3 days
Joshua Luke has been struggling a lot. It’s been a hard 3-4 days as the draining of fluids continue and they are not sure why? They are discussing MORE testing and MORE interventions. We have 3 days before they decide on a major intervention. If he stops draining on his own, then he can avoid it.
COMMUNAL PRAYER: For those of you who would like to join us, we are calling a prayer tomorrow, Friday, Dec 2nd, 8 AM to 12 Noon, wherever you are, to pray for Joshua Luke that God would touch him. Ann and I are quite down in our spirit but we believe we can lock arms and knock collectively on heaven’s door and make our petition known to God. Charles Spurgeon said “Anything is a blessing which makes us pray”. So even if we feel discouraged and heartbroken for Joshua Luke, taking it to the Lord in prayer can make the difference – especially for healing. So IF YOU CAN – please join us specifically in prayer tomorrow, Friday, Dec 2, 8 AM to 12 Noon.
Believing together. Asking God for mercy.
Nov 28: Joshua Luke Update: Day #10- waiting
Joshua Luke is improving slowly. He still has a significant amount of pain and still draining from his chest tube. Despite that, he was uplifted by his family and friends visiting this past holiday weekend. He was sad to see his visitors go and he has started asking for home. It’s hard to see him sad, but amazed at how resilient he is as he bounces back quickly and refocuses on something else. Thankfully he is still enjoying going on his “car” rides throughout the hospital. He is stronger than most of us & we are learning from him.
Please pray that the fluid stops accumulating and he drains less and less every day. Please pray that his pain subsides as well.(of course we would also have continued pain if we had 2 chest tubes in my chest). It will take him sometime to adjust to things once he’s home again. Every time we come home, it’s a very difficult transition for him. Having nightmares and just adjusting back to”normal”.
So many things that are heavy on our hearts as we begin this new week. Please also pray for patience. We know God knows all things and what’s best for Joshua. So we trust Him.
Thank you all for your prayers and support. We also pray for you all for who are praying for Joshua. Thank you.
November 25: Joshua Luke Update: Slowly but Surely
Last night was a better night. Joshua Luke got some rest. Today he still doesn’t have much of an appetite. Still with his chest tube that is draining but he is happier since he was allowed out of his room today.
Please continue to pray for increased appetite, continued healing, less pain, decreased fluid in his lungs. Also it’s been hard on him emotionally to be so limited and daily testing and blood draws and multiple exams daily from multiple people.
We are thankful for family who came to visit us yesterday and make the thanksgiving holiday still special. Our favorite part was seeing both brothers spending time together. This brought Joshua much happiness and I think he was content having his family around him yesterday. Today he has special time with his brother and uncles and aunt, which clearly helps him forget about some of his challenges here in the hospital.
Thank you to all the friends and family who have visited and sent cards from his daycare friends and teachers and all the support and continued prayers. Joshua received a video of a friend from school and I can’t even tell you how big his smile was.
Thank you all for your love for our warrior prince and all your thoughtfulness. We hope you’re all enjoying time with your family and friends. Hold them close and thank God for them in your lives – because it’s all that matters.
Nov 23: Joshua Luke Update (3 out of 3): Recovery
Joshua Luke is out of the OR. He did well with the procedure per the interventionalist. He is still sleeping because they had to sedate him, as he was pretty upset and in pain waking up from the anesthesia and procedures. He has to stay flat for 6 hours and as most of you know, he is a fighter, so he was fighting the medications to help him relaxand sleep. So they gave him a stronger sedating medication and now is sleeping still.
He is stable but needs to rest and recover slowly. They will be watching him overnight in the CICU. Thank you all for praying for our boy. We will update tomorrow morning. Thank you lifting us up on a very difficult day. ❤️
Nov 23: Joshua Luke Update (2 of 3): 5 hrs in – Still in the OR
Thank you all for praying. Please continue as we just received a limited update. Joshua Luke is still under anesthesia and they did find something (no details yet as the interventionalists are still working on him) but he is undergoing an intervention that they found necessary.
Please continue praying as this portion is very critical. Many things can go wrong at this time but we are praying he would have no complications and come out of the procedure suite soon. Thank you again. We will update soon when we know more. ❤️
Nov 23rd: Joshua Luke Update (1 of 3): It Begins.
At 7AM, the Cath lab team took Joshua Luke into the procedure suite. He knew something was going on but still his happy self. So thankful for him. He is such strong warrior. He gives us strength.
We thank each one of you who is praying with us today for Joshua. It’s going to be a long day. We will update when we know more.
Thank you all.
Tuesday, November 22: Joshua Luke Update: Tomorrow 7 AM.
Yesterday Joshua Luke had a bumpy day. He seemed more tired and a bit weaker than he did on Sunday. Not sure why as his vital signs are stable and his chest tube has been draining well. He also did not have much of an appetite either.
IMPORTANT: The lymphatic intervention team spoke with us. Joshua Luke is scheduled for tomorrow-Wednesday at 7 AM. They reviewed the procedure and the possible recovery. It honestly seems like a much less delicate procedure, 5 hours in the OR and painful for Joshua. And they can’t promise the outcome of course. Praying for God to take over it all. It’s too much to consider for Joshua to go through all this but God knows all things and He does all things well. He loves Joshua more than anyone else and we know He has a plan for him and it is only good. So we trust. Not easy but we know God and He is trustworthy. He has never let us fall and we know He won’t start now.
Praying for a good day today for Joshua – for joy despite the situation and increased physical strength and a good appetite so he can gain some weight back.
As we head into thanksgiving, this isn’t what we planned but God has given us so much and we are thankful this year for His goodness. His praise will always be on our lips.
Thank you all for your prayers and support. ❤️
Nov 19: Joshua Luke Update (2 of 2): Chest tube is in and Joshua Luke is breathing easier.
The image below is the reason why Joshua Luke was readmitted and needs a chest tube once again. He again drained a large amount of fluid – 650ml, this time. He is going through the same things he did last week. We’re now trying to combat the pain with medications.
Now we let him continue to drain and wait for the intervention next week. The two doctors who invented this procedure, will be the ones to perform it on Joshua Luke. So we are thankful that we have the best. We still hurt for him that he has to suffer but we are focusing on the good things that God has blessed us with.
It will be a challenge to keep him from losing his mind stuck in his bed for the next few days. Praying for divine intervention strength and supernatural help for Joshua Luke to endure this hospital stay & wisdom for us and his team to do what’s best for him both emotionally and medically.
Nov 19: Joshua Luke Update (1 of 2): Chest Tube Procedure
This morning Joshua Luke is getting a chest tube inside his right lung again under anesthesia. Please pray for him. He is undergoing the procedure now.
Still not sure why he must walk through this but we will trust in Who God is. He never changes.
They will be doing the invasive lymphatic intervention next week.
Nov 18: Joshua Luke Update (2 of 2): Disappointed.
Joshua Luke had his follow up this morning and unfortunately his effusion is back and Oxygenation is low. He’s being readmitted right now for a chest tube in the morning and the invasive lymphatic intervention.
The level of disappointment is indescribable but we are praying that this next step is what he needs. Please pray for him to tolerate being in the hospital again with all the IV’s, chest tube, medications, daily chest X-rays, multiple times of anesthesia/ sedation for the chest tube and lymphatic study and then enduring the invasive testing and intervention.
Not sure how his little body will be able to handle all of this but I worry about his heart and mind enduring such suffering as well. He has become so frail compared to how healthy and strong he used to be.
This is setback is very difficult to reconcile but we are not promised that we will understand everything but that we will never be alone.
Please continue to pray. Thank you for enduring this with us. ❤️#evenif #mylifeisinyourhands
Nov 18: Joshua Luke Update (1 of 2): A Critical Day.
For the last 4-5 days, Joshua Luke has been on 3 medications but has been doing ok. No visible signs of distress in his breathing – which would be an indication of his fluids rising in his lungs. Today is a Critical Day. Joshua Luke is enroute to CHOP right now. They will do an ECHO and X-Ray and possibly some other tests to get a complete picture of the Fluids in his lungs and in his heart.
Please say a prayer with us this morning. We are praying for a miracle. Joshua Luke has lost extreme amounts of weight. We have been heart-broken to see him but today could be the turnaround. Pray that his fluids are almost gone and they take him off the medications. We will update later soon.
[Thank you, Seonah and friends who compelled us to accept help to overcome financial burdens on us. Honestly, we were reluctant but after much counsel from many of you, we are overwhelmed and thankful that you would consider this help. Please DON”T FEEL LIKE YOU have to give to this fund for Joshua Luke’s bills, we value you friendship and your prayers. This Group is about Prayer Warriors locking arms to pray to our Heavenly Father. Our God will supply all our needs. He has and He will be Faithful] [https://www.gofundme.com/joshua-luke-operation-heart]
Nov 13: Joshua Luke Update: A Turnaround.
We are so excited to say that Joshua Luke is back home this morning. He made great improvements over the past 24-48 hours. They decided that they would send him home cautiously to recover. His chest is still draining and he is on medication regimen to help him eliminate the fluid that is still being made. He is also now on a low fat diet.
We are cautious because hopefully his body adjusts to the changes after his surgery and his lungs stop accumulating fluid. If the fluid does not resolve, they discussed proceeding with the invasive procedures of Lymphangiogram and intervention with or without catheterization. This is not something we want him to have to go through.
It’s been a roller of emotions, challenges and struggle for the last 8 weeks but we feel like we never walked alone. We had to purpose in our hearts that we won’t let the storm take our joy and we will trust in God to see us through. Mostly we feel so bad for Joshua Luke because he has so many emotions that he has inside of him during this extremely traumatic open heart surgery and the many times he has gasped for air. Our hearts feel shattered into a millions pieces but we keep believing that God has a purpose for everything and that Joshua is fearfully and wonderfully made.
Thank you for believing with us, sending us encouraging words, lifting us up in your prayers and caring for our Warrior Prince. It’s not done yet but we endure for hope He sets before us.
Nov 11: Joshua Luke update: So this morning threw us for a loop.
Joshua Luke woke up today with a fever. Not sure how or where he may have picked something up … even though this is a hospital – it’s the most dangerous and safe place to be.
So he had blood work today. That was traumatic. His chest X-ray still shows some haziness and given his chest tube was no longer draining anything, they removed it today. It may have been clogged. Since removing it, his chest has been oozing with multiple chest wound dressing changes. Of course we are concerned about a pneumothorax with multiple changes but chest X-rays so far are reassuring. With all this draining, we’re praying the chest empties out the remaining fluid and stops and closes up.
Also praying we find the correct medication regimen to help Joshua Luke from accumulating an effusion again. Also his appetite is again waning- please pray for this also, as he’s lost so much weight already. So finding the right medication regimen is so important that he doesn’t have negative side effects that have the potential to affect his appetite.
🙂 Today we had many friends visit today and it was just what Joshua Luke needed on a day such as this. There were three very special women who visited Joshua today (whom I sadly did not get a picture with) but you know who you are, and please know words truly fall short in expressing how much your visit meant to both I and Joshua Luke. We had some baby and toddler friends visit today as well, who played with Joshua Luke and kept his mind off all his medical challenges today. He wasn’t allowed out of his room today and it’s the worst torture for him but having you here made this day, the best yet.
Thank you for all the love & support. We love you all. ❤️
Nov 10: Joshua Luke update: Another Sunrise
Thankful for another day. Thankful that God’s mercies are new every single morning.
Joshua Luke is stable. I believe God is answering our prayers. Joshua continues to drain from his chest tube but the amount is slowly decreasing. His appetite is also improving and he’s drinking water well. His morning chest X-ray still shows some new fluid despite the chest tube. They are still considering possible intervention but for now, they’re checking daily X-rays and doing blood work today. They are continuing his medications. We are praying for this drainage to stop and NEVER return. We are just waiting on Gods timing. (which is SO very hard right now)
Joshua Like is a tough little dude – #warriorprince. He’s trying his best but it’s been hard for him to be stuck in his room. Yesterday was a tough day for him emotionally. We’ve done trips around the hospital but it’s so hard because he has to be accompanied by a RN when leaving his room (because of his chest tube) and that limits the amount of time he can be out of bed and his room. He’s been getting very frustrated now and it’s hard to see him that way. He just wants to go outside. He’s been asking for home and Judah. I’m (Ann) restricted in different ways and it’s frustrating to me and I’m not the one who has a hole and tube in my chest, and taking multiple medications multiple times daily, having multiple exams and interruptions to your sleep, so I can’t imagine just how truly difficult it is for him.
We are keeping our hope on getting better each day so we can take him home – we will continue to hope and pray and wait for Gods timing. Please continue to pray- the prayers are working!!! Please pray for patience and strength for us too. Thank you, thank you, thank you.
Nov 8: Joshua Luke update: Uncertainty
So Joshua Luke has been struggling with the pain from the chest tube but thankful it is draining and he is able to breathe easier. The challenge now is figuring out why he has the effusion or collection of fluid. They’ve run some tests and they talked to us about further potential testing, imaging and intervention. The options are not easy, in fact they are pretty invasive.
The synopsis is we are praying- if God wills, that Joshua Luke would stop draining into the chest tube in the next 2 days and if he does, then they will remove the chest tube and if he continues to do well, he will be discharged home so he can recover at home.
If he does not stop draining (and the difficulty is that we don’t know how long that can be), we will then have to consider the other invasive testing and intervention. The other intervention has its own risks and would take time to recover from that and that’s a longer hospital stay. He is also going stir crazy being here & getting so frustrated. It’s very sad to see him like this but he also rises to the occasion no matter what horrible thing it is he has to endure. He is the strongest Warrior I’ve ever known.
All of this puts a massive amount of uncertainty into what this means for everything else in our lives – Judah who is at home and whom we haven’t seen since Sunday, work and the things at home that need to be taken care of – everything was put on hold as this hospitalization was an emergency and so we had no plans prepared. Of course, Joshua Luke’s health is the priority but it seems the world continues to turn whether we want it to or not. It makes me consider on a “boring”/ usual day at work- how many others are struggling with what we are feeling now. I believe too many and we all have no idea that someone’s life just stopped and they too are praying for a miracle.
So, friends – as always, we know God is good and Faithful – because that never changes based on our circumstances. We ask for continued prayers. We have seen many
miracles in Joshua Luke’s life already – so why stop now? – we hope you can join us in asking God to help his chest tube to stop draining on its own so he would require no intervention and we can all go home again and we can be as a whole family together again.
November 7: Joshua Luke update (Update 1 of 2): Sad News – Worsening
Joshua Luke got worse over night. His chest X-ray this A.M looks worse with even more fluid despite IV medications. He’s struggling to breathe. We gave consent for the chest tube placement. We did not want this for him but looks like we have no other option at this point. Trusting God’s sovereignty and goodness towards Joshua Luke. We know He loves Joshua Luke much more than we ever could. Please keep praying.
He has been taken into the OR. He’s had a tough past 24 hrs that’s worsening and hasn’t eaten in 36 hrs. It was hard to see him asking for water because he’s so dry.
Also please pray he has no complications with the anesthesia and that he would recover quickly and completely without any further accumulation of fluid. Feeling a lot of uncertainty but knowing God’s got this. We have to believe.
Thank you friends for your prayers and walking with us. We don’t feel alone. We feel like an ARMY of friends is right beside us. We are overwhelmed by your prayer, concern and support. Thank you for the continued prayers.
Nov 6: Joshua Luke update (2 of 2): Uphill Battle
When we arrived at the ER, his oxygen level was in the 70’s which it really has never been so low. Just 2 days ago, his level was 94 on room air.
The chest X-ray showed us why. His entire right lung is filled with fluid. They just admitted him. They’re doing a trial of overnight IV medications to see if he clears the fluid. Otherwise they’ll have to place a chest tube again -which is what he is most traumatized from the last time. Please, please pray that he responds to the IV medications and he has a dramatic turn around by his repeat morning chest X-ray. They will decide tomorrow morning about the chest tube placement.
I know it doesn’t seem like a big deal to them as sometimes these collections of fluid can happen to kids after the Fontan surgery, so this may seem routine for them but it’s not for Joshua Luke or us.
We’re really praying for God to spare him from another trauma. He’s been through so much already and this is one thing he will really have a difficult time with emotionally and psychologically. His previous scar is just beginning to heal.
Also he’s begun to refuse food again. We made so much progress but again it feels like we’re back to post op day #2 again starting over with interventions and recovery.
We covet your prayers. Thank you all for standing with us.
November 6: Joshua Luke Update: Asking for prayers again.
Joshua Luke woke up this a.m. Struggling to breath and not feeling. Well. We’re here at CHOP ER. Please pray. Thank you.
Joshua had another cardiology visit yesterday with an ECHO. It showed some new fluid in his right lung. It’s not what we were hoping for but we certainly can’t complain. We get to have him at home and he’s doing really well otherwise His oxygen levels are the best they’ve ever been (94%). He’s doing so well that his cardiologist gave Joshua Luke the green light to return to school. We are very thankful and a bit apprehensive.
Thank you all for praying. Please continue to pray for Joshua Luke that he would heal completely and be rid of these effusions and be able to come off some of these medications. Our next appointment is next Friday, November 11.
Thank you all again. Your prayers make all the difference. We truly appreciate each one of you.
Nov 1: Joshua Luke Update: Back to CHOP this morning.
Joshua Luke has been struggling at home. He will have to have more imaging and blood work today. His cardiologist mentioned that if he’s not improving, he may need to be admitted. We’re really praying that he doesn’t need that. It’s been so traumatizing for him already. And we know just coming back to the hospital and doing the other tests is stressful for him as it is.
Please pray that God would intervene and that no more fluid remains in his lungs and that he would begin to eat and drink well to regain strength and healing. Praying for good test results today.
Thank you all again. Thank you for locking arms with us in prayer.
Oct 30: Joshua Luke update: We need your prayers.
It’s been a few hard days. Haven’t had a chance to update sooner but we got some disappointing news this past Friday. Friday was Joshua Luke’s follow up appointment at CHOP and it was our hope he would be able to come off his medications and the plan was to even discuss his return to school. But Friday threw us for a loop. His tests showed more fluid in his right lung so we spent the entire day there doing additional testing. It wasn’t so much the time the appointment and tests took but “feeling disappointed” is an understatement. It’s a roller coaster of emotions. His cardiologist added two more medications and now it’s a balancing game between eliminating the fluid in his lungs and still keeping him from getting dehydrated.
At home, it’s a challenge. He has no appetite and he’s losing weight fast. But because he’s not eating, he’s also not drinking water. With the three medications to remove the fluid in his lungs and him not eating and drinking well, he’s getting weak and dehydrated. It’s hard to see him so weak and frail appearing. This is the first time we’ve had to see him like this. We need your prayers that God would help his body adjust to the pressure changes and there would be no more fluid in his lungs, that he would regain his appetite and drink plenty of fluids and gain his weight back again. We are thankful for his never ending joy and strong and courageous spirit despite it all.
They said if this problem persists he may need to go back to the hospital for interventions and we really hope to avoid that.
Please keep praying. It seems we need the prayers now almost as much as we did then. We go back this Friday to see how he’s doing.
Thank you all for walking this journey with Joshua Luke and our family.
Oct 25th: Joshua Luke update: Joshua Luke’s first post op appointment – Still recovering.
We are thankful that you all are celebrating with us since Joshua Luke has returned home. Thank you all for asking for an update and how is doing.
So Joshua Luke has continued recovering and improving step by step at home. We’re still struggling with appetite but drinking fluids has significantly improved. His breathing seems fine to us at home but his chest X-ray today showed some fluid back again in his right lung. His doctor was hoping to adjust some meds or even discontinue them at today’s visit but because the fluid is more today than was present at discharge, she is continuing it for now. She is concerned so Joshua Luke is scheduled for some additional testing this Friday.
The emotional aspect is still a struggle as he is trying to figure out how to process it all and express his emotions. We think he may be having nightmares as he doesn’t wake up as his happy self anymore. The cardiologist says it is common with cardiac kids at this age after the Fontan but it’s hard to see him that way. We’re also finding it challenging to know how to support, love and comfort him while still disciplining him.
Would definitely appreciate the continued prayers for Joshua Luke. Specifically that God would continue to heal his heart and it would be strong and continue to function well. Also for the fluid to resolve and so he wouldn’t need to continue the multiple medications, which he loathes. And continued prayers for his appetite as he has lost a significant amount of weight as it was noted during today’s doctors appointment.( hard to tell via pics but noticeable in vivo)
Thank you again for your continued love, support and prayers.
Oct 19: Joshua Luke Update: Joshua Luke is discharged and at home. “Thank you God”
This is unbelievable but we got the go ahead from the doctor because Joshua Luke is doing so well…and we’ve been discharged from the hospital!! We are writing this update from home, which is really surreal for us. Joshua Luke’s turn around was miraculous. Thank you for all your prayers!! He still has a long way to go with many precautions, which we are finding out, is very difficult to follow with a toddler who is trying to deal with emotions he doesn’t understand, but we are thankful to be home again. We know it will take time for him to adjust again but we pray he will heal more quickly now that he is home.
He had a wonderful welcome home from his little brother, uncle, grandparents and Julie- his nanny who loves him like family. His Aunty Mal even had a very special surprise for him when he returned home- a Blaze monster machine, which he loves!
We are very thankful and blessed to have a community of family and friends who love both our boys so much. Thank you to everyone- near and far – for just loving us. You’ve showered us with prayers throughout this hospitalization and it has carried Joshua Luke safely through. Please continue to pray as we now do our best to help him heal completely and avoid any complications and / or infections. We have his follow up appointment and testing to ensure he continues to head in the right direction. Please continue with prayers for his appetite and for wisdom that we would know how to manage him and address his emotions and PTSD from all of this. It’s all so different compared to when he was a baby
The words “Thank you” truly fall short to convey what we feel in thankfulness and gratitude to each and everyone who is praying for us. We love you all.
Oct 18: Joshua Luke Update: Joy in the midst in suffering.
It’s a wonderful blessing to see that Joshua Luke is more and more himself with each day that passes. He has shed all his tubes,IV’s and wires except for his telemetry leads. We have been doing “Joshua Luke Rounds” as he walks around the hospital. (Which is recommended by his cardiologist to open up his lungs more. He can’t run just yet.) He loves visiting the babies in the CICU and cheering them up. He says “hi babies, feel better babies”. Joshua Luke’s joy and strength amazes us. It also reminds us of his faithful and loving God is- there is joy in the midst of the suffering.
Update on baby Lucy – the other baby whose surgery went long and Joshua’s surgery was cancelled on Oct.4th) – she is only 15 days old and has a chromosomal deletion syndrome and congenital heart disease which required surgery. Yesterday she had a blood clot. It was an extremely difficult day for her family. We let her parents know that Joshua Luke’s friends and prayers warriors have been praying for her as well. It gave them so much strength to hear that and know that despite Joshua’s difficult journey, he is now doing well. This journey of theirs has brought faith into their lives again and they are wrestling with it but very open to the prayers. Please continue to pray for her and her family. Prayers works!!! Thank you all for your love and support. ❤️
Oct 17: Joshua Luke Update – Not there yet but on the way.
Today started off a little bumpy but we are mostly just so thankful that Joshua Luke is more himself again. He continues to do well without oxygen support, heart rate fluctuates but still much improved, echo was done today which showed good heart function- which means “as expected for someone who just had the Fontan.” His chest X-ray has continued to improve.
Joshua Luke had a fun day meeting with some therapy dogs at CHOP. It was the highlight of his day. They made him walk more which is what physical therapy recommended for him. He still isn’t eating as well as he should be and definitely not drinking enough fluids. Please continue to pray for his appetite to return and increase.
Today was a glimpse into how traumatizing this whole ordeal has been for him. Just thinking about it, is so hard for us. Please pray that God would give us wisdom to know how to talk to him and interact with him after everything that has happened.
Please pray for no complications, complete recovery and to remain infection free- so hard to keep a toddler clean!! Thank you for all your prayers!
Oct 15: Joshua Luke Update: Steady and slow progress.
Joshua Luke is slowly and steadily progressing in the right direction. He still has fluid around his lungs. Please continue to pray for him that he would get his appetite back, that he would walk around more and that his o2 levels will rise above 85/90 as they wean him off the machines.
Today we had a visitor to cheer Joshua Luke on – his brother, Judah Caelan. I think they miss each other and we miss him a lot as well.
Thank you for continued prayers as he continues to make progress slowly. — with Hanna Most.
Oct 14: Joshua Luke Update: Your Prayers are being answered.
Thank you everyone here in the States and throughout the entire world – for praying for Joshua Luke. Your prayers are working! Joshua Luke gave us his first smile today since his surgery. A very special friend came to visit and all your prayers made the difference. His breathing has improved, his Chest X-Ray also has improved. The best part is Joshua Luke is not as sad as he was. He is still refusing to eat, so please continue to pray that his appetite returns. We are also trying to wean him off his high flow oxygen onto the regular supplemental oxygen. And we are trying to encourage him to walk more and get out of his room since he’s been getting sad about everything that is going on. It is a blessing to see glimpses of our usual “normal” Joshua again. It’s good for our hearts too. Thank you all, again, for your prayers and support. ❤️ We love you all.
#joshualuke #warriorprince — with Hanna Most and Elliott
Oct 13: Joshua Luke Update (3 of 3): Down but NOT Out.
Another tough day for Joshua Luke. Because of how hard he has to work to breathe, he has no energy left to even sit up or eat. We’re making small progress with some drainage from the chest tube and he is responding to the medications to help with the fluid in his lungs but even the smallest things like eating or sitting up are too energy consuming for him. He wasn’t able to do his physical therapy today as he really struggled to even stand today. He is down but not out. Despite the uphill battle, the warrior prince is not giving up. He is fighting hard but today, it took a lot out of him. Please continue to pray as this is what gets us through the day and what continues to lift Joshua up when he does not have any strength of his own left. Please pray that Jesus would touch him tonight and give him rest tonight and a divine ease is breathing so he can sleep peacefully. (Last night he slept maybe 30 min continuously). Please pray that this extra fluid leaves his body and that his body adjusts to the new pressure changes well. And also that he just starts feeling better and begins to eat and drink.
Today he said “his heart is sad.” It was very hard to hear that but he also said he knew that “Jesus is his friend.” And that’s all that matters. Jesus is with him every moment and he knows this truth. It’s a tough lesson to learn so young but it’s also a privilege to know such a truth so young. God has great things in store for our little Warrior Prince.
Deuteronomy 31:8: ” The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
Oct 13: Joshua Luke Update (2 of 3): Struggling to Breathe.
It was a long, trying night. The short story is his surgeon came to see him this a.m. Thankfully no new chest tube needed at this time but his lungs are filled with fluid which makes it hard for him to breathe. He is now on high flow oxygen, which he detests even more than the usual nasal cannula. Surgery had some tricks to get the tube to start draining more which is now working, thank God. They also adjusted and added medications. He didn’t sleep at all last night, so now we’re trying to playi catch up. He tried to do physical therapy but his heart couldn’t take it. He had to stop and we carried him back to his room. It is one of the worst things-to see him suffer but we know that God loves him more than we ever could.
“We know You are a good Father, so we surrender our Joshua boy to you and ask that You would turn this around. Thank you for and please bless all those who have joined us in this journey for Joshua’s healing. In Jesus’ name. Amen”
#warriorprince #believing #thankyouprayerwarriors — with Hanna Most.
Oct 13 (Thursday): Joshua Luke Update (1 of 3): Rough Night. Joshua is still having trouble breathing. He is now on more oxygen support but still struggling. Surgical team is evaluating him now and will decide further treatment. Please pray that Joshua would be able to resolve this extra fluid in his lungs without another procedure or surgery. Please pray for the team caring for him for wisdom to do what is best for him.
Oct 12: Joshua Luke Update (2 of 2): Emergency Prayer
Joshua Luke is having trouble breathing and very uncomfortable suddenly. The team is trying to figure out the reason but Joshua is still struggling. Would appreciate prayers now. Thank you to everyone.
Uodate 11 PM –
Oct 12: Joshua Luke Update: Appreciate the continued prayers as Joshua Luke is requiring more support for his breathing than he has needed. The team is trying various approaches to rectify the cause and get him comfortable again. Please keep praying. Thank you for standing alongside us in prayers for Joshua Luke. He hears us.
Joshua Luke had a tough night last night because of pain so he isn’t well rested but he is up this morning. They removed two IV lines so he now has 1 1/2 free hands finally. He can now hold his giraffe again. (Small but important victory.) He still has drainage from his chest so his chest tube remains. His chest X-ray this morning looks worse compared to yesterday – his right lung is hazy and he is still requiring supplemental oxygen. He did finally take a few bites of food and sips of water this morning but not as much as he needs right now.
Please pray for his lungs to clear and for his heart to heal so they can remove his chest tube and he can get rid of his oxygen tubing which has been driving him crazy the past few days. Please pray that God would give him the strength, healing(both physically and emotionally) and motivation to start eating, walking and playing again. Physical and occupational therapy plan to work with him to get him going again.
Oct 11: Joshua Luke Update (2 of 2): I can hardly believe it.
It must be the prayers of so many being answered. I can hardly believe it but 24 hrs after his open heart surgery, Warrior Prince is on the move. Surprising really! Miles to go but all his wires are slowly coming off and Joshua Luke even sat up and took a little walk (albeit, he was not happy about the walk but we had to get him moving). He was wiped out from the five minute walk down the hall of CICU and visiting neighboring babies. He is still struggling with his oxygen levels and he took a step backwards because now he is refusing to eat or drink. (He refused his favorite- ice cream, so we know he’s really not feeling well.) So please pray that he gets his appetite back and begins to eat and drink. And also that he will tolerate coming off of supplemental oxygen. All in all, we are thankful. We were able to hold him for the first time today, which was the highlight of the whole day.
Thank you for your continued prayers. They are making all the difference! We are also thankful for his little brother, “Strong Warrior”, sending us happy pictures to cheer us.
#judahcaelan #joshualuke #continuedprayers
Oct 11: Joshua Luke Update (1 of 2): Day of Recovery:
PostOp Day #1: Last night was a big night for Joshua Luke. He started coming out of anesthesia and sedation overnight, so it was a little rough with pain, discomfort and confusion but he was a true warrior. His labs, low blood pressures and oxygenation were all touch and go through the night. ( the team said this is expected but of course, we were concerned, and anything routine can quickly turn into an emergency). He gave us a few scares last night but he pushed through what most adults wouldn’t be able to handle.
So please pray that Joshua would have a smooth transition today as more tubes and wires are hopefully removed. He drank liquids through the night but also praying he gets his appetite back today. He’s resting now and being such a strong, brave little warrior prince. (He even said “cheese” when they took his morning X-ray) ❤️
#warriorprince #joshualuke — with Hanna Most.
Oct 10: Joshua Luke Update (3 of 3): Waiting and Praying.
Joshua Luke is still sedated and sleeping. They are watching his blood pressure (it’s been dipping) and balancing his volume status and heart function. He also has a slight fever that they are watching very closely. Please pray that he rests well today and is able to wake up tomorrow and that his heart pacer line can come out as well as a few other lines tomorrow. Also he hasn’t eaten for almost 24 hours, so hoping he’ll be able to start fluids at least and eat something in the morning. Thank you for continuing to lift Joshua up in your prayers. He’s fighting!
Pray for Harrison as well: Today, as you are praying for Joshua Luke, we ask your prayers for Harrison – who like
Joshua Luke was born with Hypoplastic Left Heart Syndrome. Harrison is at Arnold Palmer Hospital in Orlando. Harrison just underwent a Cardiac Cath after a CT scan revealed that he doesn’t have strong blood flow on his left side. We ask for God’s miraculous hand of healing on Harrison and his oxygen stats to rise to 80% or better and for his blood circulation to get better.
Thank you, Prayer Warriors. Thank you for walking this journey with us. Ann and I are so thankful for your prayers that uplift us, give us courage and more importantly, knock of heaven’s door to ask for His mercy and healing. God hears every prayer & they are working! We feel them & I’m sure Joshua Luke feels them too.
Oct 10: Joshua Luke Update (2 of 3): Heart Arrhythmia:
Quick Update – Joshua is out of the OR and in cardiac ICU now. We just spoke with his surgeon, Dr. Spray. He said everything went well but Joshua did have an abnormal heart rhythm while under anesthesia so he needed a pacing wire. (In addition to the dozen other “normal” tubes and wires.) They are also monitoring some bleeding. They are keeping him sedated for now. Please pray that he has no more arrythmias or complications and for a quick recovery.
Thank you for the continued prayers. The next 24 hrs is critical for recovery and for his body to adjust to the new pressures and flow of blood.
We had an early start today at 4am. As usual, Joshua was happy and playful. He did well with all the preop prep and at 7:44 AM today Joshua Luke was taken into the Cardiac Operating Room for his 3rd Open Heart surgery – the Fontan surgery. Ann and I could barely speak this morning considering what lay ahead today. Joshua Luke will undergo the third stage of the series of three today to separate the deoxygenated blood from oxygenated blood so he won’t have the blue finger and toes anymore. The most common complication after this surgery is fluid build up in the lungs because of the pressure/ volume shifts, so please pray that he would not suffer with that.
Honestly, as Dr. Spray (Joshua Luke’s Surgeon) was explaining the details, my heart and spirit were screaming out “Not Fair, God, Not Fair. Why would you make my son go through this again”. Then it hit me. He knows how I feel. One early morning, He walked His son to the Cross. He let His son go through much pain so I can be free. Although, our hearts break again today thinking of Joshua Luke, in a strange way, I know we don’t walk alone. He is with us and you all too – all of you that are praying with us.
Isaiah 53:5 – “But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed”.
Oct 9th: Joshua Luke Update: The journey starts again.
Today after 1 PM, we started the journey again – we are back in Philadelphia and tomorrow morning 6 AM is Joshua Luke’s 3rd Open Heart. The last few days have been very difficult for Ann and I as our friend, Eric Koby, went to be with the Lord (on the same day is Joshua’s intended surgery- 10/4/16). With all our emotions and trying to gather courage, we are ready again. Please pray for us friends. The thought of what lies ahead tomorrow scares us but we have to believe that our Father in Heaven loves Joshua Luke more than we ever could. We’ll set the alarms to 4 AM and head towards CHOP believing Joshua 1:9 – that His presence with goes with us and He is always with Joshua – even when we can’t be at his side.
Joshua 1:9: “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
(If you are on Facebook, please Joshua Luke’s Prayer Group here: https://www.facebook.com/groups/1411982892442008)
Oct 4/5: Joshua Luke Update (3 of 3): Not Over Yet.
Dear Prayer Warriors, Thank you so much for praying for Joshua Luke. I do believe God intervened. His timing is perfect and we are believing that as we look towards next Monday – Oct 10 – for his open heart surgery. It’s not over yet. For now, we leave Ronald McDonald House and head home.
So thankful for Ronald McDonald for what they do to take care of families and kids. There are currently 322 Ronald McDonald’s Houses in 63 countries. There are people from all over the world that stay here for one purpose: their children. It’s amazing to talk to parents and pray for their children.
Thank you from the bottom of the hearts for walking with us the past 48 hrs. It’s been an emotional journey and your prayers lifted us up and carried us thru. We will head back on Sunday again for Joshua Luke’s Surgery. Until then, if you can, continue to pray for the little one who was in the operation room for over 8 hrs. May God heal that little child completely.
Oct 4: Joshua Luke Update (2 of 3): God has a plan and we have to trust Him thru this. Maybe He heard our prayers.
After waiting in the OR waiting room for 6 hours, the surgery team came and cancelled Joshua’s surgery because the first case of a little kid wasn’t going well. His surgeon is still in the OR. We don’t yet know when he will be re-scheduled. Please continue to pray – not sure what God has planned but we’re trusting Him. Also we are not coming home yet until we hear from them if it is happening tomorrow or later. Thank you all for your continued prayers and steadfastness. Thank you prayer warriors for standing in the gap with us. We will update soon.
Oct 4: Joshua Luke Update (1 of 3): Here we are. Life’s inevitable moments when our Faith needs to rise above our Fears. But somehow I am not sure if I am ready for this.
This morning as Joshua Luke sleeps, we are believing that God will hear our prayers. Jesus said “only believe”.
We found out late last night that Joshua’s surgery was pushed to 8:30 AM. Friends, thank you being our courage today and standing with us. You all mean the world to us.
“Yea, though I wash through the valley of the shadow of death, I will fear no evil: for though art with me; thy rod and thy staff they comfort me.” Psalm 23:4
October 3rd : Joshua Luke Update: All packed and ready to go!
Today at 12 Noon we set out with our warrior prince towards Children’s Hospital in Philly. All through the 90 min drive, I was remembering all the times we had done this before. God has been good to us. Tomorrow at 6 AM we will check into the Cardiac Intake Center. Joshua Luke’s open heart surgery will be in the morning. Keep him in prayers. He will be undergoing a very risky and complicated surgery called the Fontan. The goal is to separate de-oxygenated and oxygenated blood.
Today we pray for His peace for us and rest and protection for Joshua Luke as he prepares to go into battle tomorrow.
September 21st : Joshua Luke Update: Joshua Luke back at CHOP: Joshua Luke Update (1 of 2): Early this AM at 5:30, Joshua Luke was prepped for what the day holds for him. He was sedated and taken for MRI. At 8:00 AM they will make a decision whether he needs a cardiac catheterization with intervention prior to his open heart surgery on Oct 4.
Please pray with this AM that he would not require a Cardiac Cath. That would be a miracle. Thank you for joining us on this journey, friends. Thank you for lifting our Warrior Prince in your prayers.
September 20th : Joshua Luke Update: Joshua Luke back at CHOP: Friends and prayer warriors, we need your prayers. Joshua Luke, our Warrior Prince, is back at CHOP today. He will be undergoing a series of pre-op tests, an MRI and a Cardiac Cath with possible interventional procedures in the next 2-3 days. We are preparing for Oct 4 when he is scheduled for his 3rd Open Heart Surgery. Please keep us in prayers.
As we were driving to CHOP this morning, all the words of EVEN IF was echoing in my heart. EVEN IF has been real and raw. All the words of the speakers added courage to our hearts. “Even IF is about enduring till the end – fighting the good fight even when we don’t feel like it…”
Today Joshua Luke has had many pre-ops tests – EKG, Echo (multiple), blood tests, x-rays, many others. Exhausted we have come to Ronald McDonald House for the night. We will go at 5:30 AM tomorrow for a MRI followed by Cardiac Cath. There is a less than 5% chance he would not need a Cardiac Cath if his blood vessels look perfect. Joshua Luke’s oxygen levels are at 83-84 which is an indicator that he does need an Open Heart Surgery.
Please pray with us that a Miracle would happen and he would not need a Cardiac Cath. Praying for His Will. Please pray that God would continue to keep His hand on our warrior prince. #roughday #Godisgood
August 12th: Joshua Luke Update: Happy 11 Months B’day, Joshua Luke: Many of you readers and people who prayed for Joshua Luke know about this year’s Collyde Summit theme: OVERCOME. It’s based on John 16:33 ““In this world you will have many trials and sorrows but take heart, I have overcome the world”. We had no idea when the theme was released that this was about to get personal. But isn’t that the way God works in our lives? The last 16 months have been one of great heartache, great joy and great testing of our Faith. God has used all aspects of this trial to build our marriage, make us dependent on Him and truly understand the meaning of what Jesus said, as He was looking to the Cross himself, “Take Heart, I have overcome the world”. Joshua Luke’s story is a story of Overcome and so is yours. If you find yourself in a season of deep heartache and personal challenges, please know God is right by your side and as a Christ-follower, He has already Overcome for you in many ways, you may not yet understand.
Today is a happy day for us. Happy Birthday 11 Months B’day, Joshua Luke!
July 24th: Joshua Luke Update: Another Miracle: Great news! Our prayers were answered! Yesterday was a very hard day for Joshua Luke but today he seems more himself. It’s amazing how resilient the warrior prince is and it’s a testament to God’s sovereignty and mercy in his life.
We think he knows he’s been through something traumatic and he’s trying to process it but for now, we’re thankful that he’s doing better and has no complications from the procedure itself. In fact, he’s doing so well and all his testing returned to normal levels that we’ve been discharged home!! Yay! God has done it once again! All glory to God! Thank you dear friends for standing with us in prayer again. Please pray that Joshua Luke will recover fully as he rests at home.
July 23rd: Joshua Luke Update: Post-op: Thank you everyone, for all your prayers! JL just came out of the cath lab. We just met with the interventional cardiologist. They saw some narrowing of his arch with a gradient and dilated it with a balloon, so no stent placed (thank God) and no coils needed. Thankfully there were no complications.
We just saw him in the cardiac recovery unit. Poor Joshua Luke. He’s swollen and crying and disoriented and his voice is hoarse (we think from the intubation). His cry is weak. They say he’ll be fine but it’s hard to watch him struggle. They also had a hard time finding his pulse in his leg initially but it appears to be slowly improving. Please join us in praying for a quick, easy, complete recovery without complication. Thank you, Jesus for your healing through medicine and your mercies!
July 23: Joshua Luke Update # 1: Heads into OR
So thank God, all Joshua’s blood work including his kidney function all normalized. Joshua’s catheterization was delayed because the baby before him had some complications. At 3:30 pm, Joshua Luke was taken into the cath lab for his cardiac catheterization. The procedure normally takes 3-4hrs and we’ll be getting updates every 30min-1hr. Please continue to pray – for Joshua Luke and the other baby also.
July 22nd: Joshua Luke: Needs a Cardiac Cath: Dear Friends, it’s with a heavy heart that we wanted to share that Joshua Luke will be undergoing a Cardiac Catheterization tomorrow.
From all the Joshua Luke updates, most of you are familiar with this procedure. The team of doctors aren’t sure what exactly is the cause of his symptoms so the only diagnostic and (hopefully) therapeutic intervention is a cardiac catheterization. Please pray for discernment, wisdom and skill for the doctors treating him and performing the procedure. This time, now that he’s older, Joshua Luke will have to be intubated and go under general anesthesia and there will be two access entry points which increases his risk for complications. Please pray for God’s mercy, healing, protection and favor on Joshua Luke. Tomorrow is going to be a tough day for us, somewhat knowing what to expect but we ask God to have mercy on Joshua Luke. Now that he is older and he’s more aware of what’s going on around him, we ask for mercy. On a good note, Joshua Luke is his happy, playful self and is only slowed down by all the wires and gadgets they’ve attached to him during this hospital stay. I think he views them as challenges and funny enough, he always finds a way around the obstacles (the IV access in his arm, the heart monitors and his crib) to still play and investigate his environment. Thank you all for the prayers and love! Please keep praying! Your prayers make a difference! We will keep you updated. Lots of love, The Thomas family 🙂
July 21/22: Joshua Luke Update: Emergency Update: Warrior Prince in ER at CHOP
July 21st: Emergency Update: Joshua Luke: dear friends/prayer warriors, due to decreased oxygen levels, Joshua Luke is back at CHOP emergency room 🙁 We ask for your prayers tonight for our little warrior prince.
July 22nd: Joshua Luke Update: Joshua Luke was admitted to CHOP last night. They’re doing some testing to figure out what’s causing his episodes of turning blue. He had his echo (ultrasound of his heart) this morning. We are awaiting results. They found one more issue in his blood tests. Blood showed elevated creatinine. (Kidney function)- so they’re doing more testing to figure out if anything is wrong with the kidney. Joshua Luke is hanging tough and is a subdued version of himself but doing okay, thankfully. Please keep praying and we will continue to share updates. (Lots of love from Warrior prince.
July 12 2014: Joshua Luke Update: Overcomer: Happy 10 month birthday, Joshua Luke, our little “warrior prince.
Since our last update, Joshua has started to crawl, stand and cruise, now says “mama” & “amen”(his version) & is very mischievous! Update on his Neuro Eval: We had his first neuro-developmental evaluation at the end of June and was given an amazing report that he is meeting all his milestones and has “no area of concern”. This is yet another miracle in his little life. When we were given his diagnosis last Spring [(April 29 :)] and we were advised to abort, we were told time and time again that if we decided to “keep”him, he would very likely have cognitive delays and many other issues. So, this evaluation is another miracle and cause for celebration.
So many of you are walking this journey with us, so we know you will celebrate this “milestone” with us. We know we still have quite a journey ahead and God holds our future in His Hands but we have learned to be thankful for every moment and day and blessing we’ve been given. So today, we celebrate! We’re so humbled and thankful to our Heavenly Father for blessing us with this wonderful privilege of being Joshua Luke’s parents and being able to witness God’s faithfulness and power in such a tangible way.
“We love you, our little warrior prince! You are an #overcomer.”
May 20, 2014: Joshua Luke Update: Mixed Results: So Joshua Luke is now 8 months old 🙂 He is a big boy. Here is the latest picture of him – taken by Heidi Lee Naylor. Ann and I are definitely blessed with a happy baby boy and it’s been so amazing see him grow up.
Cardiology Appointment update: As we took him for his cardiology appointment yesterday, we realized it’s been 3 months months since his last visit . The cardiologist said he’s clinically doing well and the echo showed good heart function. Unfortunately the echo also showed persistent narrowing of the aortic arch. This could cause his heart to have to work harder than it needs to. She advised to have the interventional pediatric cardiologist who did his previous catheterizations, to take a look and see what he recommends. JL’s cardiologist thinks he may need another catheterization to help dilate the narrowed area. We are hoping to hear the consensus of what the next step should be, by Friday. Can’t help jumping so quickly to this old familiar feeling in the pit of my stomach “here we go again”, but then just as quickly remembering that we still have so much to be thankful for and we know God is in control and is Faithful.
We need your prayers again dear friends and prayer warriors – as we wait to hear from Joshua Luke’s cardiology team at Children’s Hospital in Philadelphia.
April 29, 2014: Joshua Luke Update: April 29,2013 – A day that changed everything: It’s been 12 months. April 29, 2013 is a day we will never forget. The only thought on our minds, as we drove to our 20th-week anatomy ultrasound was – Is it a boy or a girl? As the Ultrasound tech started the scan, we were excited, joking around, laughing and could not wait to find out who would win the bet – boy or girl? Little did we know that dark clouds had surrounded us. 12 months ago, this day, our 20 week old unborn baby boy, Joshua Luke, was diagnosed with hypoplastic left heart syndrome (left ventricle missing). That day our hearts broke into a million pieces. That day our faith met head-on with our fears. That day everything we believed in, was challenged.
So here are the 3 things we learned (big picture) about suffering and struggles that will remain with us as the journey continues:
- Suffering is inevitable here on earth. In John 16:33, Jesus said, “In this world you will have trouble”. So, firstly, do not be surprised when hard times hit. Take heart because you are not alone. Take comfort in the fact that there are many brothers/sisters around you that are going through similar trials.
- Secondly, God allows suffering to come into a believer’s life because it is through suffering that we come to know Him. Philippians 3:10 says “that I may know him, and the power of his resurrection, and the fellowship of his sufferings,…”. Suffering is a part of the overcome story of Jesus and it is a part of our overcome story here on earth. Suffering allows us to identify with our savior, Jesus. He endured the cross because it was through suffering LOVE was revealed.
- Lastly, suffering allows you to relate to others and reach out to them. I have heard it time and time again through many sisters and brothers that because of their personal hardships, they are now able to relate to others going through the same or similar struggles and are therefore prepared to pray, serve and be there for them. This has been so true for Ann and I. We have literally received hundreds of emails, Facebook messages and prayer requests that clearly show us that Joshua Luke’s Story has a purpose. Suffering ends in Hope. Always. (Romans 8:28 – “All things work together for good. to those who love the Lord and who are called according to His purpose.”)
Ann and I can truly say that our faith is stronger today as a result of going through this journey. We also experienced what it is like to have many brothers and sisters standing right next to us in prayer through the journey. Amazing view of what life, on this side of eternity, is supposed to be – a journey with friends, who often become “family”. Today, 12 months later, Joshua Luke is doing well but there are still miles left in this journey. If you can, pray for our little family today.
Prayer Request: Dear Prayer Warriors, please pray for Evenlyn today. She is a cardiac baby as well and she is not doing well. Here is her mom’s blog: http://growinggromlichs.wordpress.com/2014/04/29/just-when-i-thought-we-were-out-of-the-woods/. Please join us and let’s lift Evenlyn to our heavenly father.
April 3, 2014: Joshua Luke Update: A Happy Boy: In 8 days, Joshua Luke will be 7 months old. Geez. Slow down, little man 🙂 … It’s amazing to see our little warrior prince growing up. When we look at him, sometimes, our eyes fills up with tears – truth be told – there were times in the last 6 months, when weren’t sure we would make it this far. But God, in His amazing grace and power, spoke life and we are happy beyond measure to see Joshua Luke – our happy baby boy – growing up, smiling, giving us hugs & looking into our eyes. He is truly a miracle. Thank you to so many of you for praying and even fasting as we walked through the tough moments. Here are some of the most recent pictures of Joshua Luke (the pic on the right is his first time on a swing, which he loved, by the way.:))
Update: Next major CHOP appointment will be in May. We are however planning to take him down to CHOP to start his Neurology assessment. More updates to come. For now, we enjoy moments of laughter and happiness with Joshua Luke – as we continue to believe, think and pray for what lies ahead. God is authoring a story in Joshua Luke’s life and we are humbled that God considered us worthy to be Joshua Luke’s parents. He is a gift..
Special Note to our friends at Zarephath Christian Church: Joshua Luke will be coming to church for the first time on Sunday, April 13th. Many of you fasted and prayed and dropped off meals, gifts and so much encouragement during this journey. (Disclaimer: the following request this may sound crazy but over the past 6+ months, we’ve learned that we have to be wary of even the simplest of infections because they can be life-threatening for Joshua. So, thank you in advance for understanding.) We are asking that no one touches him on April 13th because his risk of infection remains a concern but we are excited to worship our God with you and Joshua Luke. Joshua Luke is looking forward to seeing you all!! 🙂
March 3, 2014: Joshua Luke Update: Write Your story on my heart: In 9 days, Joshua Luke will be 6 months old. Wow! Our baby boy is 1/2 year old and he has weathered many storms in the last 6 months! He fought with all his might and through it all, has stayed a happy, playful baby. God has brought us far on this journey. So today, before the update, I wanted to share a video of Joshua Luke. This video is a really a THANK YOU to all our friends and loved ones who prayed for “warrior prince”. God, not only heard your prayers and did a miracle for Joshua Luke, but your prayers gave Ann and I courage when we had none. We can never forget all those moments of brokenness, tears, laughter and celebration. With this video, we release some of the pictures NEVER seen before from the hospital and home.
Update: Last update mentioned the intervention that needed with Joshua Luke. Great News – After checking blood pressures at the cardiologist’s office, the whole team at chop – cardiologists & surgeon discussed Joshua Luke’s case and the final consensus was that it wasn’t a significant difference and shouldn’t affect him clinically. He’s growing well and clinically looks great. It’s great to be home for this long of a period without any hospitalizations and or interventions. God has heard our hearts and answered our prayers. So the next scheduled major appointment is in May with his entire team at CHOP! Continue to pray for Joshua Luke as we head back to CHOP in March to meet with the Neuro-developmental team. More updates to come.
Feb 10, 2014: Joshua Luke Update: Pressing Forward: So it’s been 30 days since the last Joshua Luke update. Thank you for the many emails, facebook messages, phone texts inquiring about how Joshua Luke is doing. We are so blessed to have friends that don’t give up praying for our little “warrior prince”. In three days, Joshua Luke will be 5 months old. We are so very thankful for such a precious gift. He is truly a miracle and we’re reminded of that daily.
Thankfully, Joshua Luke has been doing very well. His oxygen levels have been great, he is hitting all his milestones, his pulses have been steady and he is growing up. Ann and I have been extremely cautious not to let our guard down during the FLU and viral season due to the fact that congenital heart babies have serious problems if they get an infection. So, Joshua Luke has not met many people and hasn’t yet had a play-date with all his other baby friends.
Last Tuesday was Joshua Luke’s third CHOP Cardiologist visit after his open heart surgery six weeks ago. The doctor said she thinks there is an issue. We noticed during the visit that his blood pressures were elevated. During the visit, they performed an ECHO of his heart, which has become routine during his cardiology visits, and upon reviewing the study, the cardiologist thinks there might be a problem with the pressures or velocity of bloodflow to the upper body. The increased pressures are a concern as they can affect the brain. (Remember during the first and second surgeries, the blood flow was re-routed, thereby altering pressures to the brain and body). This upcoming week, all the other cardiologists at CHOP will review the study and determine the next step. Joshua’s cardiologist thinks he may require a repeat study under sedation and if he truly has higher pressures in the blood vessels, then he may need another catherization. We have been praying that another intervention will not be needed and no more hospitalizations until his third and final surgery.
Please join us in praying and believing for the same. God has done many miracles already and we know He has will never leave Joshua Luke’s side. He promised. Thank you once again for praying and believing with our little family.
Jan 12, 2014: Joshua Luke Update: 4 months old: It’s tough to say it but it’s true…. Ann and I weren’t sure if we would be given the privilege by God to see Joshua Luke doing so well on his 4 month old birthday. We celebrate today. Joshua Luke is doing well. He is growing, his oxygen saturations are above 80, his scar are healing well, his headaches are doing down and his teething has begun. 🙂 As terrible as teething is, he is constantly in pain, this time, we are happy that it a “normal baby” occurrence. 🙂
Thank you, friends for standing with us through the storm. We heard from many of you even in the last 7 days, checking up on Joshua Luke with heavy hearts. It takes a little weight off our hearts to see that you love Joshua Luke so much, that you went to war for him in prayers. It is my prayer that this will cause a chain reaction of folks prayering for each other as we share our stories boldly and ask Him to move. I leave you today with a rather confusing verse that Jesus says in Matthew but I believe he was talking about bold prayers.
Matthew 11:12 = “And from the days of John the Baptist until now, the kingdom of heaven suffers violence, and the violent take it by force.”
If you’re interested about hearing more about being a prayer warrior, click here to see a must-see video from Dr.David Ireland at Collyde Summit 2013: http://vimeo.com/71779883
Jan 4th, 2014: Joshua Luke Update: Slow Recovery: So it’s been three days that Joshua Luke has been home. Recovery is slow. Joshua Luke has been struggling with a lot of headaches and he cries a lot and puts his hands on head – as though he is trying to tell us. We also realized that he is teething and this adds much more to the recovery process. He tries so hard and he’s normally such a happy, light-hearted soul but it all is so much for a little baby to take. So, he has his good and tough moments/days.
I, personally, [so it’s Jinu’s theory :)], also feel like he was over medicated with drugs like Gabapentin, which was supposed to help with pain. The over-medication (7+ drugs) that were pumped into him with all the other IVs, anesthetic drugs, etc, gave him a bad stomach ache as well. I think a little body can handle only so many chemical drugs. He still receives 3 drugs at home on a daily basis for his heart.
Please continue to pray for Joshua Luke. He has a long, hard road ahead of him. Our “warrior prince” is a fighter, though and he endures everything with tears and a smile on his face (sometimes only seconds apart). The great news is that his oxygen levels are doing ok and his surgical site across his chest is healing well. His O2 sats are above 78 percent. We pray that God would continue to keep His mighty hands on him and allow him to recover well and completely so he can be a baby for the next 2 yrs before his third & final open heart surgery. Please also pray that he will continue to reach all his development milestones and trauma of the surgeries will not hold him back. “Father, we pray that you allow Joshua Luke to grow up, physically, mentally and spiritually, in favor before God and man.”
Friends, we’d LOVE to pray for you. If you have a prayer request for your journey or something we, the collyde team, could pray for, please send it to firstname.lastname@example.org or leave a comment below on the blog and we will make sure we pray for you. Our next fasting and prayer day is January 18, 2014
Jan 1st, 2014: Joshua Luke Update: Great News!!! Day 7 and we are heading home 🙂 🙂 🙂 We still can’t believe it. In 7 days, God has done a miracle. Joshua Luke has been off oxygen machines for 24 hrs and he is doing ok. He still needs to recover and rest and come back to himself 100% but our “warrior prince” is fighting hard and his God has touched him and has shown him favor. Thank you, God.
Thank you, to our friends and family, from the bottom of our hearts. Your persistent prayers and unending love & support has uplifted the three of us through this journey.
Happy New Year!! January 1, 2014 – we OVERCOME – because Jesus has overcome everything. This New Year – BELIEVE! God loves you much, much more than you can imagine. You are not alone. He fights with you. Invite Him to join your journey.
Psalm 97: “The Lord reigns; Let the earth rejoice; Let the multitude of isles be glad! Clouds and darkness surround Him; Righteousness and justice are the foundation of His throne. A fire goes before Him, And burns up His enemies round about. His lightnings light the world; The earth sees and trembles. The mountains melt like wax at the presence of the Lord, At the presence of the Lord of the whole earth. The heavens declare His righteousness, And all the peoples see His glory.”
Dec 31st: Joshua Luke Update: Some wise person once said “all good things come in waves.” 🙂 Certainly true with Joshua Luke’s story. After coming to the Cardiac Care Unit, Joshua Luke had been slightly more irritable due to the blood flow changes and his body adjusting to the new hemodynamics in his chest. Pressure building up in his head is giving him severe headaches during recovery. Lastly the most important thing: Oxygen. Joshua Luke is struggling to come off supplemental oxygen. We tried two times to wean him off but his oxygen saturation falls below 70 percent (an average person has a saturation of 97 to 99 percent – HLHS kids after the second surgery range from 75 to 92 percent).
Could you please join us in prayer for another MIRACLE, friends? We’d like to see Joshua Luke fully off supplemental oxygen and for him to breathe on his own on room air. Please pray for his headaches and upper chest blood vessel “rearrangement” so his body can adjust. The same God who did so many miracles in the Bible and in Joshua Luke’s body and life, this past year is able to heal him again. Thankful for friends who pray, fight and overcome. We will overcome together.
Dec 29: Joshua Luke Update : Another good day: Yay! Good News! Joshua Luke was stepped down today from the Cardiac ICU to the Cardiac Care Unit – a unbelievable recovery in 48 hrs. His oxygen saturation seem to be going in the right direction. He is eating well and sleeping well. Our prayer is that in the next 2 days he is able to maintain his oxygenation levels on room air and no supplemental oxygen is required. He smiles today and responds for us as he did before surgery. What a gift. God is so good. Thank you friends… Keep praying for his oxygen saturation and wouldn’t it be a miracle if we are home on Jan 1st. Believing. As a good friend texted us today “Man, I love God and how He is showing himself to you guys”.
Dec 28: Joshua Luke: Through the eyes of God: As I stared into the open blue sky this afternoon, I started thinking – “what if God did not allow storms to come our way”? What if we did not have “uncertainty” and “heart-ache”? Would we truly understand the LOVE that our Father in Heaven has for us? If we did not walk through the dark moments, would we truly understand the power of walking in the light? Just some random thoughts that started crossing my mind and heart as we begin to process what truly is happening in this journey with Joshua Luke.
Today was a great day for Joshua Luke. Ann and I are so thankful for the direction this day has taken. It’s started with the good news of “no stroke” and ended with him coming off of some medications. Today is the 1st post-op day he slept for 2-3 hrs straight with no interruptions. The road ahead has many challenges. Tomorrow is a big test. Will Joshua Luke be able to sustain breathing normally on the newly created blood flow to his lungs? We continue to believe and walk one step at a time by holding on to the promises of God. Here is the one that began it all — Joshua 1:9 “Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go.”
Dec 28th: Joshua Luke: “Repeat that again”: Many of my updates began this way – so let me start off this way again. “You won’t believe it” but… the top neurologist at CHOP, Dr. Licht – arguably one of the top pediatric neurologists who specializes in cardiac babies- in the world, came at 9 AM today to review and do his own testing today. After 30 mins with a large Neuro team analyzing the “stroke” in Joshua and after looking to the CT Scan and Ultrasound and actually examining Joshua Luke’s pictures from 2 weeks ago, he turned around to us said “I don’t think he had a stroke”. Repeat that again.? Over 4 experienced cardiologists (from CHOP) concluded yesterday “he had a stroke”. But today, things turned around 180 degrees.
Our thought: Maybe – just maybe – with an army of friends praying fervently (& violently) overnight – God in heaven had something to say about this diagnosis. Maybe the feet of the very One who created Joshua Luke walked beside His bed last night. All we can say “Thank you, God, for being our God”. His mercies are new morning. Our hearts are overwhelmed – this time – with joy. We could hardly speak. This day we celebrate. This day we overcome. #onlybelieve
(((oh man, we don’t know how to begin to say thank you to our friends… We love you all and cannot wait for you to meet and play with Joshua Luke, face to face – so you can say hello to warrior prince and he can say thank you with a smile :)))
Dec 27th: Post Op day#3- Joshua Luke Update: Something bad happened: Today was the day we wish never happened. Joshua Luke had a stroke and the left side of his face seems to droop. Another day our hearts broke- more than ever before. Seems like there are more ups and downs and we are begging at the feet of the Cross for mercy. Joshua Luke was taken immediately for a CT Scan of the head and then a brain ultrasound. So far they did not find any hemorrhage and no blood clots. They are planning to do an MRI to be conclusive. We need prayers. The name Joshua means “God is my Salvation” and tonight we pray for God to save our little”warrior prince” from any more problems.
Dec 26: Joshua Luke Post-op Day 2
Joshua Luke: Post-surgery day 2 – Update # 2: FAITH: This day continues to be a hard day as well for Joshua Luke. His recovery is really slow. He was kept pretty medicated most of the day. He still needed the CPAP machine to support his breathing. He has started to eat a little whenever he is awake for few minutes but not anywhere close to the amount he usually eats. Basically the cardiologists are taking a “wait and see” approach. Tomorrow becomes a really crucial day to see how Joshua Luke has progressed overnight. Please continue to pray for a miracle. This whole journey has been a summation of small miracles from God. His hand is evident in everything. Some days are harder than others but isn’t that what Faith is all about? You believe when things don’t look good, you fight when the storms of life come to overtake you and you press on when you have no strength left to keep going. God is there in the midst of it all. Friends, thank you for encouraging our hearts with prayers and love when we need it the most. Isn’t that what Faith is all about? We’ll keep walking and keep believing – together.
Hebrews 11:1 – “Now faith is the substance of things hoped for, the evidence of things not seen”
Joshua Luke: Post-surgery day 2 – Update # 1: Thank you dear friends for your emails, texts and FB comments of prayers and words of life. Joshua Luke had difficulty breathing last night and his oxygen saturation dropped to the 30’s, so they had to put him on a CPAP machine to help him breathe easier. It’s so hard for him. They did a lot of testing to see why he is having such a hard time but they can’t figure it out. They said today all the cardiologists are discussing his case to figure out what to do. Please pray that God would give the doctors wisdom and please pray that God would keep His almighty hands on Joshua Luke. He promised “I will never leave you nor forsake you”. Believing.
Psalm 91:14-16 – “Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him and show him My salvation.”
Dec 25: Joshua Luke: Post-Surgery Day: Rough day for Joshua Luke: So this Christmas Day Joshua Luke had a really rough day. His face is really swollen, he currently has 2 IVs put in and 1 Arterial Line, he had over 3 Echocardiograms because the cardiologists feel there is a narrowing in the pulmonary artery, one of his lungs have collapsed small airways and his oxygen saturations fell below 55 percent (dangerously low) at least 10 times today. The cardiologists think something is wrong but they want to wait and see. Ann and I feel really heart-broken to see Joshua Luke go through this day. We pray and believe that God will move the mountains for him. Thank you for your continued fervent prayers. It gives Joshua Luke the courage the fight and Ann/I the strength to stand with him. We love you guys
John 16:33 “… In the world you will have tribulation; but be of good cheer, I have overcome the world.”
Dec 24th: Joshua Luke’s Update: Day of Surgery – 3 Updates from the CHOP
Update 3 of 3 – Praying for a Miracle – Joshua Luke is making progress but is still not out of the woods. His blood drainage has decreased but he has miles to go. PWe beseech your continued prayers as we pray for a miracle for Joshua Luke. Miracles do happen to those who believe. 2000 years ago – this day – the Greatest Miracle took place – as the Savior of the world was born in Bethlehem and today in our hearts. Thank you today for standing with us and asking for a miracle for Joshua Luke. We pray that overnight he would become much better. They predict that after this procedure, each baby has a very difficult and painful first 2-3 days in recovery. Please pray for an easy, quick recovery free of complications.
Update 2 of 3: Prayers Needed – Joshua Luke’s surgery was a success but immediately after he began oozing blood. We, including the doctors, are worried. He’s currently receiving blood products. We ask for our prayer warriors to continue fervent prayers and please pray with us for all bleeding to stop. We know God had His hands on our little warrior. Our “warrior prince” is fighting with all his might. Thank you for the prayers. We will keep you friends updated.
Update 1 of 3: Joshua Luke in OR Room – This morning at 7:10 AM they took Joshua Luke to the Operating Room. The surgery will take at least 5+ hrs. Dr. Spray informed us this morning that he will be doing the modified hemi-fontan on Joshua Luke. In this procedure, the venous blood from the upper body is connected directly to the lungs and a patch is placed from the right atrium to the pulmonary artery. They reminded us of all the risks again and in our minds, we reminded ourselves how Big our God is and the fact that He has planned out all the days of Joshua Luke before he came into our lives. Praying for our little “warrior prince” to rise and fight. He has a long road of recovery ahead. Thank you for all the prayers this Christmas Eve, friends.
Dec 23rd: Joshua Luke’s Update: T’was the night before surgery: So tomorrow at 6 AM Joshua Luke will be wheeled off again for his 2nd open heart surgery, the Glenn procedure. All the pre-tests were done today and we signed all the consent forms that all have a very long list of risks and complications. This will be a longer surgery – roughly 6 hours. Recovery is estimated to take 7 days if there are no complications. Joshua Luke is sleeping as I write this update.
Jinu’s personal thoughts: Today is a hard day for me. There is a lot going on inside of me. I know I am supposed to be strong and courageous but can I be honest with you friends? I think my heart is weary. I feel like there is a lump in my throat and a fear in my heart that I have not been able to shake for the last couple of days. Just the thought of my little baby boy going through another open heart surgery overwhelms me. In the midst of the fears, I felt God’s voice whisper in my heart – “I am with you. My hand is on Joshua”. We don’t feel alone; we know there are friends praying and fasting and standing with us. This morning I was reminded by my heavenly Father — who feels the same way for me (even much more, actually) as I feel for Joshua Luke — and who loves Joshua Luke much much more than I ever could:
Psalms 139: 7-9 : “Where can I go from Your Spirit?Or where can I flee from Your presence? If I ascend into heaven, You are there; If I make my bed in hell, behold, You are there. If I take the wings of the morning, And dwell in the uttermost parts of the sea, Even there Your hand shall lead me, And Your right hand shall hold me.
Dec 15th: Joshua Luke’s 1st Christmas: Open Heart Surgery # 2: Joshua Luke has been OFF oxygen since he left the hospital on Dec 7th. Yay! God is so good – He has had favor on Joshua Luke due to the prayers and love of so many friends. As most of you know by now, Hypoplastic Left Heart Syndrome babies go through three open-heart surgeries in the first few years of their life: Norwood, Glenn and Fontan. Joshua Luke underwent his first open heart surgery, the Norwood procedure, on Sep 16th (further down on this blog is the pics/updates from that day) and usually the next surgery, the Glenn, happens after 4 months but there is an EXCEPTION being made for Joshua Luke (now 3 month and 3 days old). We received a call last Tuesday, Dec 10th, that Joshua Luke’s second open heart surgery, the Glenn Procedure, which was scheduled to happen on January 23rd of 2014 by Dr. Spray is now on December 24th – Christmas Eve. We believe this is a GOOD thing because the Glenn procedure decreases the pressure/work load of the right ventricle, which is better for the long term. Also, as most of you friends know that Joshua Luke’s heart was already showing signs of wear and decreased motility and so he is taking Digoxin to help his heart beat stronger. Ann and I are happy but honestly, feel a little overwhelmed as well.
Baby Joshua Luke just came back from the hospital and this time it took him seven days to recover and get back to “normal” feeding. Now, again, seven days from now – we will be driving back to CHOP for his 2nd open heart surgery. Our hearts are heavy for him. Please pray for us. We know and believe in Romans 8:28 – “And we know that in all things God works for the good of those who love him, who have been called according to his purpose”. This Christmas Eve say a prayer for Joshua Luke, as our “warrior prince” weathers another storm, another battle and another fight. We know we are not alone – that God is with us (Emmanuel) and all you friends – who read the blog, pray, text, write notes, we know you all are standing with us. As we look at Joshua Luke on Dec 24th, we will not forget another Baby who came into the world for us – to remind us – how much we are loved and how far a Father will go to whisper into our hearts, I love you. Believing for a miracle – whether it comes through the surgery or through His touch.
Dec 7th: Cardiac Cath Day – Update # 3: IT HAPPENED: We can hardly believe what we heard this morning – “He does NOT need Oxygen”. Wow!!!! Could it be? IT HAPPENED. Another miracle. All signs pointed the wrong way but when you are a son or daughter of the Most High God and you have 1000s praying (brother/sisters in Rwanda, Uganda, US, Australia, India, Europe, Canada) – Jesus had compassion on Joshua Luke and healed him. Our hearts and eyes weep tears of Joy today. We could NOT have walked this road without our friends/family and army of prayer warriors. Thank you – thank you – thank you – from the bottom of our hearts. We love you all. You have given us the best gift this Christmas season – your Love and Prayers. The journey still has miles to go – but today we celebrate. “Thank You, Dad. We LOVE you”.
((I know we were privileged that many of your shared stories of the storm you are going through. Just wanted to say…. Trust in Jesus – He loves us more than we can ever imagine – Make Him a close friend and He will walk with you. Ann and I and Joshua Luke love you and we are praying for you))
Dec 6th: Joshua Luke Update: Cardiac Cath Day – Update # 2: The “warrior prince” is out of the Cath Lab and sedated and sleeping. Joshua’s in recovery now. The Cardiac Cath Specialist said they found some narrowing close to the previous conduit (Sano Shunt) placed and he dilated the area. No new additional stent was placed. He’s extubated and we’re watching his oxygenation now. So far it looks OK but has had a few dips and needed some supplemental oxygen but not continuously. They say that could be because of anesthesia still wearing off. Please keep praying for his oxygenation, fluid status, quick recovery without complications and no need for supplemental oxygen at home. That is the miracle that we’d like to go home with this weekend – No Supplemental 24/7 oxygen at home. Thank you friends for prayers and walking with us. We know God is able and He will perfect that which concerns Joshua Luke. He was fearfully and wonderfully made by His creator.
Dec 6th: Joshua Luke Update: Cardiac Cath Day – Update # 1: After an unexpectedly long wait this morning and 4 attempts to get an IV line (poor baby – but he’s a trooper), at 10:20 AM, Joshua Luke was taken to the OR for a Cardiac Cath. Ann and I don’t feel alone at all. Thank you for your texts, emails and prayers. We feel your love. Though our heart aches this morning for our “warrior prince”, we feel God’s presence with us. We are blessed to have you with us. Thank you. We will update soon.
Isaiah 46:4 – …. I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you”
Dec 5th: Joshua Luke update: Prayers Needed – Cardiac Cath tomorrow: Here is the latest on Joshua Luke. CHOP doctors could not figure out why his oxygen saturation is low, so Joshua Luke is having a cardiac cath tomorrow, Friday, Dec 6th tentatively at 6 AM. It is an invasive procedure with many risks but it’s necessary to get to the bottom of Joshua’s low oxygen levels. Here is the hard part – if the cardiac cath does not find anything, it’s actually really bad. This means Joshua Luke will need to stay on oxygen until his second open heart surgery (the Glenn procedure) on January 23rd. There is also a small chance that the Glenn Surgery will NOT solve the issue. This is extremely bad news because Joshua Luke will be oxygen deprived and will require a O2 tank with him permanently. We need your prayers – now more than ever. God sees and hears from Heaven. The Bible is full of stories where the prayers of His people were answered. This is no exception. God can answer our prayer. Please join us tomorrow – Dec 6 – Friday – as we seek His face – as Joshua Luke is wheeled again into the operating room. May His presence walk into that room and guide the hands of the doctors.
Dec 4th: Joshua Luke update: Parents at CHOP: Everyone has a story. As we walk in and out of all the buildings at CHOP, there is a common sight. It’s a mom or a dad sitting down to catch a breath – some in tears, some gazing out through an open window and some waiting for one glimpse of hope in the midst of the storm. Where do you go when your world comes crashing down?
Today I was deeply moved by a prayer request on a wall by a dad or mom. I feel strange to share a note on a wall but friends, could you pray for the person in the note that God would move and heal and restore strength and courage. Maybe our prayer will change a world today. Can you join me? ((Bonus pics of Joshua Luke))
Dec 2nd: Joshua Luke update: 2nd – Cardiac Catheterization: Joshua Luke will be undergoing another cardiac catherterization. After a series of tests and hypotheses, the doctors at CHOP could not figure out – why Joshua Luke’s Oxygen Saturation is still at 68% to 71%? In HLHS patients, like Joshua Luke, they’d like to maintain an oxygen saturation between 75% to 80%. (remember in kids without congenital heart disease, this should be closer to 98%). There is also a new discussion that was introduced – should Joshua Luke’s 2nd open heart surgery (the Glenn procedure) be done earlier than planned – from January 23, 2014 to sometime in December 2013. We don’t yet know what the plan or recommendations will be. According to the doctors at CHOP, the catheterization will likely show stenosis or narrowing of the shunt that was created during Joshua Luke’s first surgery and if so, will need further intervention. Please pray for Ann and I. We are thankful that we caught his drop in oxygen saturation sooner rather than later but we are scared to send Joshua Luke through another invasive procedure yet again with all it’s possible complications. But we take ONE STEP AT A TIME knowing that God has this path already mapped out for us.
During times like these, you look back and realize how far God has brought you. Ann and I looked through the 1000’s of pictures we have taken and are reminded of how faithful and good God has been to Joshua and us. Because we know, many of you love us and having been praying with us, here is a collage of how much our little “warrior prince” has grown in 2.5 months.
Dec 1st: Joshua Luke update: Cardiac Cath?: So Joshua Luke is still requiring oxygen and all tests so far have been negative. Depending on what Joshua Luke’s Cardiac Team (his surgeon, his interventional cardiologist, his cardiologist and his cardiac anesthesiologist) decides tomorrow, the path will move ahead. It seems like there is only one earthly option left on the table. So we wait for the Expert Team to discuss tomorrow.
Thank you friends for your unwavering and long-suffering prayers for Joshua Luke and us. We will update everyone soon on what this team decides. Of course, we believe there is always an heavenly option on the table 🙂
Nov. 30th: Joshua Luke Update: Cannot figure out what’s wrong. Thank you so much to our friends who have risen as prayer warriors alongside us. Your prayers, words and love mean the world to us.
In the last 12 hrs, Joshua Luke has undergone many tests to figure out why his oxygen saturation is low but we still cannot figure out what’s wrong. His chest is clear of obstruction, his CBC (complete blood count) is ok and his ECHO cardiogram shows all is ok with the stent that was placed and shunt that was created in his heart. He is on 0.5 liters of oxygen. We are waiting for a test to see if he has a Viral Respiratory Infection. There is one big option we are heading towards. On Monday if all else fails, we will have to do an invasive procedure, a Cardiac Catheterization.
Please continue to pray God would give the doctors wisdom and lead them to the right solution.
Nov. 29th: Joshua Luke Update: Joshua Luke Admitted at CHOP? At 7 pm tonight, Joshua Luke was admitted to the Cardiac Care Unit at CHOP. His oxygen saturation has been fluctuating a lot and his cardiologist believes something is wrong. Please stand with us in prayer again.
It was very emotional to walk back into this place (many memories/many tears) but we continue to believe that God has great plans for our little warrior prince. God is Faithful.
Nov. 27th: Joshua Luke Update: Might be back at CHOP? Happy on Tuesday, November 26th, Joshua Luke went to his Cardiology appointment with a Children’s Hospital at Philadelphia specialist. The good news, first – the ECHO cardiogram showed a slight improvement since starting the medication, digoxin, but the apex of his heart is still not contracting the way we would like. The not-so-good news is, his oxygen levels are extremely LOW. We have noticed that he is eating less and has not been himself for the past 6-7 days. So we are not sure what’s going on. After speaking with his cardiologist today, we will monitor him over the next 24 hours and if this persists, Joshua may have to be directly admitted to CHOP on Friday for a full evaluation. Of course, we would rather him not be in the hospital, so we beseech your prayers this Thanksgiving. We are praying his appetite increases, he gains weight and his oxygen levels go back to his normal levels. Thank you to all our family and friends. We are thankful for Joshua Luke and our friends and families, this Thanksgiving.
Nov. 20th: Joshua Luke Update: Trouble in Paradise. Happy two-month B’day, Joshua Luke! On November 12 – our baby boy, Joshua Luke, turned 2 months old. It was a precious day and a great reminder to cherish moments we have together and to look back and see how far God has brought us. Prayers, emails and texts still keep pouring in for our “Warrior Prince”. It melts our hearts to feel your love for him – so, thank you friends.
On Tuesday, Nov. 4th, a routine bi-weekly ECHO with Joshua Luke’s Cardiologist from Children’s Hospital in Philadelphia revealed some major concerns. It showed decreased contractility of one of walls of his ventricle. During the ECHO as Joshua Luke was crying a lot, the cardiologist noted that his heart didn’t move or contract as robustly as she would have liked. Most babies that have Hypoplastic Left Heart Syndrome have some degree of decreased motility after surgery but usually they recover. Joshua Luke’s heart is not recovering as expected. We have starting him on heart medication – Digoxin – to help it pump stronger, in order to decrease the work or effort of the one ventricle, so it doesn’t tire out. Hopefully, the medication will only be need to help until the second open heart surgery, which is scheduled as of now, for Jan. 23, 2014.
It was a hard day to say the least. Ann and I felt like the waves of despair kept hitting us and just when we thought for 30 days, all is well, this news was discouraging. But hope is never lost because His creator, our God, who specializes in mending broken hearts, physical or spiritual, has Joshua Luke in the palm of His hand.
We’re praying that God strengthens his heart muscle. Please also pray for his feeding. He was doing well and increasing his intake but over the past 10 days, he’s eating less too. Not sure if it’s because it’s hard work for his heart and he’s tired or if he’s just being a normal baby and being fussy on and off. So please pray about these things. Thank you one again for all the prayers!
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. (Galatians 6:9)
Oct 12th: Joshua Luke Update: Happy 1 month Birthday, Joshua Luke. Yep, it’s been 30 days since our “warrior prince” came into this world. It seems like the longest 30 days of our lives but today, we celebrate! God has been good to us. The emotions are still sometimes raw – just to think what we left behind. Today it’s tears of joy. We look ahead.
Joshua Luke is doing really well. You can guess what is missing in the picture above – yep, zero tubes 🙂 🙂 His feeding tube is out as well. His o2 saturation is doing well and he is growing well. [(in his picture – we were experimenting with a mohawk to complete his “warrior prince” look :)] His first cardiology appointment was few days ago and the ECHO showed that everything is working as expected. As we looked through the screens to see his heart and his new aorta and archways carrying blood in and out – we realized – Joshua Luke is a miracle baby. “God has plans for Joshua Luke. He formed you and made you uniquiely and fearfully. Your journey has just begun but may you always realize, as you put your hand to your heart – He is with you and you will never walk alone”.
We know – many of you are celebrating this special moment with us. You walked this journey with us. We never felt alone because you showered us with love, support, prayers and words- words of encouragement, words of testimony and words of battles won. It strengthened us, gave us courage to look beyond and made us expectant to see His hand move. He did. And so, we rejoice, God has turned our mourning into dancing.
Invitation: Hey if you are going through a storm/hard time, can we pray for you? Use the comment feature below – to share your story or to just share your name and “please pray for me”. Go ahead. We will stand in the gap for you. This is what this journey is all about “everybody needs help and everybody can help”. We were never meant to walk alone. Let’s do life together.
Sep 29th: Joshua Luke Update: Home – Sleepless in Bridgewater. I should have listened to all you parents with newborns/kids 🙂 – “Sleep now Jinu.. when Joshua Luke is here you can forget about sleep”! Oh, how I wish I could have stored up sleep like Sully and Mike Wazowski stored up screams in Monster’s Inc 🙂 🙂 [wait… this might be my sleep talking]
First ride towards Home: We had a lot of emotions driving down with Joshua Luke for 1.5hrs towards home. I think at one point, we were listening to Matt Redman’s song, “Never Alone” and we literally bawling and crying. We realized we had gone through a battle, we had witnessed that God never leaves us alone and we believe God stooped down from heaven many times to wrap us up in His and reassure us that He loves us. He was always there.
What a joy to have our “Warrior Prince” at home. The feeling cannot be described in words. Joshua Luke has been doing well. He needs to gain a little weight but we are keeping a close watch over him. Everday we record his weight (he needs to gain 20-30 grams per day) and record his oxygen saturation. Every week, on an alternating schedule, he needs to meet his cardiologist (from CHOP) and pediatrician/primary care (from Hunterdon Family Practice & Obstetrics – Ann’s work place – Thank you to these awesome ladies, our friends, who loved us beyond measure with their words and love).
Here is Joshua Luke with his mommy in his room for the first time.
Hey moms and dads reading this blog – have any advice for us Newbie parents?
Sep 26th: Joshua Luke Update: It happened. You won’t believe it if I told you 🙂 Ready?
The MIRACLE we prayed for happened late last night. The doctor’s words “Joshua’s recovery has been one of the fastest we have ever seen”. His O2 saturation has been great after the stent placement. He had been growing in weight a little so we took Joshua Luke home. Super fast! Has to be God’s grace and the power of prayer of family/friends. It’s been an emotional 14+ days but we can truly say we saw His hand. It came in the form of literally hundreds of people rising up to pray with us and for us. Friends, you prayed Joshua Luke home and we cannot thank you enough. Joshua Luke still has quite a road ahead. We were discharged home with equipment to measure various parameters for our congenital heart baby. Infection is the greatest inter-stage risk before his next surgery in January so he won’t be at public places and will not have many visitors. But we know God has a plan for our “warrior prince”. We love you all so much for what you gave us: love, peace and courage.
Sep 25th: Joshua Luke’s Cardiac Cath:
Update # 1: Another long and tough day has begun. Our “warrior prince” was whisked away again for a cardiac catheterization. Our hearts are broken today. It was so hard to look at his eyes as he looked at us as we walked him towards the OR again.
Thank you friends for your prayers today. We need His grace, strength and His peace today – as we continue to “only” believe. Please pray that God would move His hand and heal Joshua Luke. [one more update in few hours] [one more update in few hours]
Update # 2: Another tough day. Another battle won. Small victory but heading again in the right direction. Joshua Luke was found to have a narrowing of his heart repair (shunt) and required a stent (5mm) to be placed for increased flow to his lungs. He’s in recovery right now and doing well. Improved oxygenation but we have to pray and wait until the anesthesia wears off.
Joshua means “Yahweh is my Salvation”. Joshua Luke is learning through trials even as a baby – a promise from God – “Do not fear, for I am with you. Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.”
Ann and I are experiencing this promise and have found it to be true in this journey. Never alone. [thank you to all our prayer warrior friends]
Sep 25th Update: Joshua Luke Post-Surgery: Major Problem – Need Prayers Today.
Two of the most critical things for Hypoplastic Left Heart Syndrome babies during recovery is: weaning off of the OXYGEN slowly (so they can breath on their own) and the growth of these babies. So Joshua Luke has been doing well in the later. He has slowly been gaining weight. It’s been slow but the trajectory is positive. The problem however has been his oxygenation. Joshua Luke has been sitting at an O2 Saturation range of 70-74 and this is low, with low levels of supplemental oxygen. Since early this morning, he has dipped down to the 60’s and has needed more oxygen support. So today they are planning to do another procedure: Heart Catheterization – to see if there’s some obstruction or if he needs a stent to open/dilate the vessels. This means he will need anesthesia again and another intervention with the heart. Of course, this comes with it’s own risks and possible complications. It is scheduled around 2 pm this afternoon. So please pray with us. Pray for wisdom for the team and God’s mercy on Joshua Luke as he’s been through so much already. Thank you all. Feel free to pass this request to others who have been praying for Joshua or will pray. Love you all.
Sep 21st Update: Joshua Luke Post-Surgery: Good news! Joshua Luke is now stepped down from Cardiac Intensive Care Unit (CICU) to Critical Care Unit (CCU). Yay!!!! “Warrior Prince” is fighting hard and winning battles one victory at a time. The Lord has been good. He still has a little fluid around his heart – so we can continue to pray for complete healing.
The Plan: The plan is for Joshua Luke to be weaned off of oxygen and allow him to learn how to feed while coordinating breathing. The trauma of the surgery has set him a little back on normal things he would learn in the first 10 days of his life. Joshua Luke is among the very few kids that have recovered this fast – so if all things work well and no unforeseen things happen, Joshua Luke will be HOME in 7-10 days. Once this miracle of going home happens, Joshua Luke will take some time to get accustomed to the home because he is “congenital heart disease” baby. There many things to monitor while at home and numerous follow up appointments that need to take place on a weekly, bi-weekly and monthly basis. He has a great risk of infection so you can expect Ann and I to be “Purell” parents 🙂 – super cautious and protective parents in keeping germs away from him. If the next 4 months are uneventful, then Joshua Luke will be back for the second-of-three open heart surgeries, the Glenn Procedure.
The road has just begun but we are so thankful to God for his favor and mercy on Joshua Luke and us. Thank you to the many friends who have joined us on this journey to pray and storm heaven’s door to plead for mercy.
Sep 20th Update: Joshua Luke Post-Surgery: It’s the 4th day since Joshua Luke’s surgery and things have been looking up. He has all this tubes/lines out except his blended oxygen tube. He has begun feeding, he’s pooping 🙂 (yep, so important) and his vitals all look good.
We did have a little problem yesterday because the ECHO of his heart showed some blood surrounding his heart. He is under observation to see if the level of blood is increasing or decreasing as his body absorbs it. He still sometimes has some decels in his oxygen levels but it is getting better.
Joshua Luke will be in Cardiac ICU till Monday, Sep 23th and he will hopefully be “stepped down” into CCU(critical care unit). Everyday is a small victory. Yesterday he had milk via his mouth for the first time 🙂 … Yesterday, Ann and I were able to hold him in our arms for the first time since his surgery. It’s amazing to see how much we feel for Joshua Luke and how we want to FIGHT his battles for him…. but we know – we can only pray and be here with him. .
Just being here at CHOP and being surrounded by sick children is heart-breaking. But you see hope and beauty in life. I look forward to posting a small blog tomorrow (Saturday) about things that are shaping my heart and things that need some RE-thinking in my own life.
“God can take the tears of yesterday and transform them into the miracles of tomorrow. He can restore to you in all abundance what you have lost. He can cause all things, even the painful events of your past, to work together for your good” – Joseph Prince
Sep 18th: Joshua Luke’s Surgery: First post-op picture of “warrior prince”:
It’s been 60 hrs since Joshua Luke’s surgery and today was a good day. His swelling is down and his breathing is good today. 80 percent of all the wires/tubes are out and one important one remains: right atrial line and pacemaker wires. They are planning to remove these wires tomorrow. We were told that one complication is, if this line, that goes directly into the right upper chamber of the heart, has issues with bleeding, then they may need to open up his chest again. (Worst case scenario). Prayer warrior backup requested. [Since so many of our friends were standing with us, we wanted to post the first post-op picture attached]
Sep 17th: Joshua Luke’s Surgery: Day after Surgery: 2 Updates
Update # 1: It’s been 24 hrs since Joshua Luke’s surgery and he did extremely well through the night. Thank you for prayers. All his vitals were catching up … Except maybe Urine Production (sorry for the details 🙂 This morning at 8 AM, the second part of his surgery started. They need to close up his chest – which was left open yesterday for swelling and bleeding issues. It’s a quick 45 min surgery. Another day … Another Fight. “Joshua Luke, be strong and courageous. Do not be afraid – for the Lord your God will be with you.”
Update # 2: Update from the bridge-way at Cardiac ICU (Picture above): It’s been 36 hrs since Joshua Luke’s surgery and there is some good news Because his vitals began stabilizing, they just extubated Joshua and so far he is breathing well on his own – yay! They are watching him closely tonight to make sure he can maintain his own breathing. So Joshua Luke, our courageous one, is a FIGHTER. As they pulled out the wires, he did not even make a peep 🙂 So as we continue to pray … we pause to CELEBRATE God’s goodness! He has Joshua Luke in the palm of His hand. Ann and I sat at the bridge-way ( picture) for a brief moment – looking up to the sky to say – “Thank you, Dad”. Please continue to pray as there are many more things we have to overcome before we can take him home.
Sep 16th: Joshua Luke’s Surgery: The Day of Surgery: 4 Updates through the Day.
Update # 1: This AM Joshua Luke was taken to the OR at CHOP to first get an Echo (as we had requested) and if the diagnosis remains, the 4 hr surgery will begin to mend his heart. We are praying for His Will today. We will continue to update all our friends who are praying for Joshua Luke today.
Update # 2: The ECHO shows that the diagnosis remains. Joshua Luke is a HLHS baby. At, 9:05 AM, Joshua Luke was taken into the OR for his first of three open heart surgeries. The first step of the surgery has been successful.
Update # 3: The surgery was a SUCCESS 🙂 God is so good. We met with Dr. Thomas Spray and he said “All is well. The next 24 hrs is the critical recovery period”. Thank you, dear friends for praying for Joshua Luke. Your love and prayers mean the world to us. The journey has just begun but we are thankful to God for today’s victory. Please continue to pray for his recovery. We’ll keep updating from time to time.
Update # 4: It’s been 12 hrs since Joshua Luke’s surgery and our “Warrior Prince” seems to be pulling through ok. The next 12 hrs over night is crucial. He did have a little bleeding and right now has low pressures that they’re adjusting and monitoring.
Many of you have emailed, texted and FB messaged Ann and I asking how we are doing. First, thank you for all the support & love. The last 4 days we have gone from worry to joy to worry to great shock. We are trying to process bits and pieces but seeing Joshua Luke with hundreds of wires/tubes/drains will change us forever. We are taking one tear and one victory at a time. We believe Joshua Luke has a great destiny ahead of him… he will rise. Thank you for your love with concern. We love you guys for standing with us on this tough day. Please continue to lift Joshua Luke up in prayer to our Heavenly Father.
Sep 15th Late Update: Last Step of Faith. It’s hard to describe in words how Ann and I were feeling today – 24 hrs before Joshua Luke’s scheduled first-of-three open heart surgeries. Joshua Luke is scheduled for his surgery at 6:30 AM, Monday, September 16. There was feeling of helplessness, fear, many tears, many kisses for Joshua Luke and some moments where we felt our faith rise – even though it feels like – it’s so last minute. Could God show up the way we want Him to, by healing Joshua Luke’s heart? Afterall, the Bible is full of examples when God shows up at the last moment. Lazarus was 4 days dead when Jesus raised him from the dead. Shadrach, Meshach and Abednego were looking at sure death by fire when suddenly the feet of the 4th person, that looked like the Son of God, landed in the midst of the fire. Paul and Silas were beaten and put into the jail when all of a sudden the gates of the most secure prison flew open. Jairus’s daughter was healed a little late – she died. So emboldened by all these stories, we did something today.
Last step of Faith: Call us foolish 🙂 …. but today, Ann and I, sent a personal request to the Surgeon, Dr. Thomas L. Spray (Chief, Division of Cardiothoracic Surgery, CHOP), a personal favor/request from the baby’s parents. Let’s do one last ECHO before his surgery. This is considered extremely strange but we feel like we want to take ONE LAST step. If God chooses to intervene, He can because He is almighty, we will see his heart fully funcational. If God chooses to walk with us through this surgery, He can because He is almighty, we’ll accept to walk by faith the road He has prepared for us. But one act of defiance, one last step of faith.
Please pray with us. Tomorrow is a really critical day for Joshua Luke. Thank you for the love everyone has poured on us. We have received hundreds of texts, emails, facebook messages, comments and cards. We still believe.
Sep 14th Update: Fuzzy road ahead. The verdict is in: Joshua Luke WILL undergo his first open heart surgery to fix his hypoplastic left heart on Monday, Sep 16th which was confirmed with a repeat ECHO after birth. It is again heart-breaking news but we were purposed in our hearts to accept His soverign will – no matter where it led.
What lies ahead for Joshua Luke is a very hard road. Three open heart surgeries in the first 4 years of his life. The first step is called the Norwood surgery. The risks are extremely high [because of the type of surgery itself, requiring cardiopulmonary bypass and what that entails, as well as Joshua being so little and will only be four days old] and his recovery may take 3-6 weeks. [For those who want to read a little more details on Joshua Luke’s surgeries – here is a link]. Yesterday as we heard the very detailed description of what they will do to his body, we wept. It was hard to hold him and see his perfect face/body and think about the details of what they told us.
Jinu’s Personal thoughts: Yep, in all honesty, I have had thoughts about all those questions. Why did the God of the univserse not move his finger (just a tiny bit 🙂 to mend Joshua Luke’s broken heart? Would he still intervene? Is He waiting till the last minute like Lazarus to surprise us like a dad does? What if He does show up the way we want Him to? What will happen if something goes wrong with the surgery? My mind has a lot of questions this morning as I sit here alone in the waiting room with my laptop looking at the sky. “I know you see me Dad. I know our eyes meet even though I cannot see you physically. If you have chosen this broken road ahead of us to perfect Your will and Joshua’s purpose, please give us courage. But I know even now Dad that you can change the course. You can show up. So I ask you this morning, I beg you this morning, please spare Joshua Luke from going down this journey. Please move and heal his heart. I still believe. The whole world is in your hands.”
Thank you: I just want to say thank you to all our friends and family who have been praying for the last 5 months. I don’t think we could have made it this far in peace without your prayers. Please continue to believe. Thank you for overwhelming us with your love, prayers and words. More updates soon.
Sep 13th – Update: Everyone has a Day 0. He arrived. Freshly wrapped from heaven. At 11:42 AM yesterday, Sep 12, Ann gave birth to our baby boy, Joshua Luke Thomas. The much prayed for and much anticipated baby boy – here he is:
Words cannot express what it means to see the face of the baby we have cried so many tears for. What a joy! Yesterday was a good day. All of Joshua Luke’s vitals and all the external physical signs show that Joshua Luke is perfectly made. He cried of loud when he was born [(always a good sign but in this special cardiac situation, a celebrated moment :)], he needed no oxygen to help him breathe and a physical check of his lungs/organs shows all is well.
Immediately after birth, Joshua Luke, was whisked away to the Cardiac ICU, where he was given prostaglandin to keep his small heart going. Yesterday, Joshua Luke went through an extensive ECHO Cardiogram for the Doctors Review (cardiologists & surgeons) – which happened this morning. We are still waiting to hear from the doctors. How is Joshua Luke’s heart doing? Does he need the 3 step Open Heart Surgery? (if yes, then Joshua Luke will go into his first open heart surgery in 2-3 days)
Today out of the thankfulness and praise of our hearts, Ann and I prayed, probably a similar prayer that Abraham said – “God, don’t let a BLADE touch our son’s body. Heal Joshua Luke’s tiny heart”.
Sep 10th – Update: It’s time. Joshua Luke is 39 weeks and 5 days old and as planned, he has stayed inside the “oven” 🙂 till 40 weeks. Ann’s induction is scheduled for Thursday, Sep 12th. Yesterday, Sep 9th, Ann and I moved into the Ronald Mcdonald House in Camden. So thankful to Calvary Chapel in Philadelphia and Pastor Jerry for making the needed phonecalls and making annoucements in church. Since the day that Ann and I shared that we needed a place in Philly, close to CHOP, we have had more than 12 offers for us to stay over. Amazing. Overwhelming grace. We were deeply moved by all our friends and their friends who created options for us. Thank you.
Today, Sep 10th, we had our Final OB Appt at the Fetal Heart Center at CHOP. The good news is that Joshua Luke went from 13th percentile to 35th percentile 🙂 His growth is really good. We also met with our surgeon face to face, who shared with us about the surgery after Joshua Luke’s birth and the risks that are involved with this “High Risk” Surgery. As the surgeon was explaining many things, I could not help but think about these words “My frame was not hidden from You, When I was made in secret, And skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed”. Is anything too hard for the Great I AM? Yet in the following few hours, there was a little trepidation. But we celebrate with joy knowing that despite the unknown, His track record in our life has been nothing but “spotless”. Never once did we ever walk alone. He has been faithful. We have to believe. Whether He will protect us and shelter us from the storm or if He decides to walk with us through the storm, we will trust Him.
Here is another 4D image from Joshua Luke to all his friends. 🙂 Thank you for all the love, prayers and support!
Sep 4th – Update: Here it is! After 20-25 hrs of work – painting, re-painting, painting the molding, setting up the crib, setting up the dresser and putting on the new decals from etsy – Voila! Releasing Joshua Luke’s Room to all our dear family/friends who have walked with us for the last 5 months.
Here is the latest on Joshua Luke: The last four weeks we’ve had a lot of tough moments. We found out 3 weeks ago that Joshua Luke was in the 13th percentile and was not growing properly. The doctors said “This is common for babies with HLHS” – but Ann and I were really worried. Secondly, Ann was having strong contractions so she was immediately put on full bed-rest for 2 weeks but went back to work on a modified schedule soon. Scary moment. Every time we felt a little down – we were reminded of the verses of Psalm 139 (that is on Joshua Luke’s wall)
“For You formed my inward parts; You covered me in my mother’s womb. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well. My frame was not hidden from You, when I was made in secret, And skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, The days fashioned for me, When as yet there were none of them”
Ann is being induced on Sep 12th and we have begun packing up to leave to Philly this weekend. We will be away for 5-6 weeks. It feels like we are going on a journey (like Abraham w/Issac). We know we will encounter God when Joshua Luke is born but the question remains in our heart: Will He show up and heal Joshua Luke miraculously? Or has He chosen a different path for him? Surely God has seen our tears for the last 5 months. Surely God has heard our prayers. Will He radically intervene to heal his heart or will He whisper to us through the storm, “My grace is sufficient for you”. We wait. . . . Stay Tuned.
Aug 21st – Update: Firstly, Ann and I want to take a moment to say “Thank you” to all our friends for your prayers and words of encouragement (via emails, cards and texts). Thank you for your love and lifting up Joshua Luke with us to our Father in Heaven. Yesterday was a tough day at CHOP (Children’s Hospital of Philadelphia).
Joshua Luke’s growth is displaying concerns as he is in the 13th percentile. This is low. According to the doctors, babies with Hypoplastic Left Heart Syndrome have growth issues during the last 3-4 weeks. Ann and I were a little concerned after the Ultrasound. We will now have weekly testing until delivery. Having said that, we also had a Fetal Echo Cardiogram and the good news is that the only ventricle Joshua has, right ventricle, is stable and steady with no issues. Our next appointment is next Tuesday. We continue to pray and believe that God will show up at any moment.
Though it was a tough day, just being at CHOP and seeing so many parents and kids going through storms, made us realize, there is a purpose. We are called to be “Salt” and “Light” and we are called to share the hope we find in Christ to many. So we are thankful that we get to possibly interact with parents/kids going through struggles and this journey with Joshua Luke has already changed us by making us sensitive to pray for these parents and kids.
Matthew 11:28 – “Come to Me, all you who labor and are heavy laden, and I will give you rest.”
Joshua 1:9 – Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
July 22nd – Update: Dear Friends/Family, I want to take a moment to introduce Joshua Luke to you all. Here he is (3D ultrasound photo):
Yup!! The little guy we all have been praying for and continue to pray for is above. Ann and I were shocked to see this picture on the screen when we had our last Ultrasound/Fetal Echo at CHOP. Last Monday, we had a scary experience of Ann having pre-mature contractions at 32 weeks. We were extremely worried because we were warned early-on that it was important to keep Joshua in the womb for as long as possible to give him the best chance, to optimize everything including his lungs. Ann has been put on complete bed-rest with increased fluid in-take to prevent early delivery that would jeapordize Joshua’s life. Ann and I are heading back tomorrow for our monthly tests at CHOP. We are eagerly and desperately praying for God to show up with a miracle. We believe. Thank you for your prayers and faith as we stand strong in Him.
June 25 Update: Today, Ann and I, went for our 28-week “routine” ultrasound and fetal echo at Children’s Hospital of Philadelphia. The good news is that Joshua is growing well with no other co-morbidities. He is 2.9 lbs already 🙂 God is good. In babies with HLHS (Hypoplastic left heart syndrome), sometimes the tricuspid valve on the right side of the heart can become incompetant and allow back flow, however, thankfully Joshua’s heart is strong and everything looks good. We were also given a tour of the Special Delivery Unit (SDU) – where Joshua will be delivered [(if he is not healed 🙂 which is what we are praying for :)] and the Cardiac Intensive Care Unit (CICU) – where Joshua will be transferred after the surgery. It is expected that Joshua’s first of three open heart surgery’s (norwood procedure) will take place within 3 days of his birth. He will take around 4-5 weeks to recover and come home. Ann and I will be moving to Philly for 6 weeks starting the first week of September.Thank you to all our friends for your continued prayers for Joshua Luke. We believe that God is able to heal Joshua’s heart and we continue to pray for a miracle. Thank you believing with us.
May 19, 2013: Original Blog
We couldn’t have seen it coming. On April 29. 2013, the only thought on our minds that day as Ann and I drove to our 20 week Anatomy ultrasound was – Is it a boy or a girl? As the Ultrasound tech started the scan, we were excited, joking around, laughing and could not wait to find out who would win the bets we had placed on a boy or a girl? Little did we know that dark clouds had come around us. The tech kept saying “everything looks fine”, “everything looks fine” and then kept looking at something over and over again for 20 mins. Then with a deeply saddened face he turns around and says these words that I will never forget. “We have an issue with the baby’s heart”. Our 20 week old baby boy [(yep, it’s a boy :)] was diagnosed that day with hypoplastic left heart syndrome. Our little Joshua Luke Thomas – our promise baby we had been praying circles around for years in prayer – was missing the left ventricle in his heart. Our worlds came crashing down as we cried our hearts to God for the next 5 days.
Where do you go when you heart is broken in a million pieces?
There, as I lay in the middle of the floor that night crying out to God, I realized I had been sharing the story of a man named Jairus for 12 months now, whose 12 year old daugher, the apple of his eyes, was dying in front of him. As a dad, he tries everything and then as a last resort, this jewish synagogue rabbi, desperately throws himself publicly at the feet of Jesus and begs him to save His daughter. The story doen’t go as he had planned. She dies. Right before, he could break down, Jesus looks into His eyes and says “Only Believe”. The story of Jairus had become real in my life. The theme of Collyde Summit 2013 just took on a whole new meaning. Would I believe the words of Jesus? Would I give him the broken pieces of my heart as He whispered in my ears that night “Only Believe, my son. I am here with you.”?
Read the Story of Jairus in Mark chapter 5 – here and see how this story ends.