February is CHD Awareness month come along side us as we celebrate CHD Awareness, it is also G Tube Awareness lets make Awareness for G Tube as well.
Trust in the LORD with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths.
Proverbs 3:5-6 NKJV
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Hello,
We are the Thigpen’s
We are a beautiful family of 6. We are Ronald and Amanda the parents of 5 amazing children. Isiah, Infinity, Logan, & Tori who is now married and out on her own. We took Tori and Logan in our home as God had laid it on our heart to do so and it has been an amazing time for growth for all of us. In Nov we found out we are expecting our precious gift, Illyana. We love to be the hands and feet of Jesus everywhere we go, we are so grateful for the amazing community God has placed in our path to do life with, We are truly blessed with wonderful people,
Come along the Journey !
God has placed us on a journey with our sweet precious baby Illyana Raya. On March 29th @ 28 weeks pregnant they confirmed that she has Tetralogy of Fallot with Absent Pulmonary Valve. DiGeorge is the cause of the heart diseases and her only having one kidney. We are learning more daily and invite you along to travel and pray for this journey along with us and our family. We know God’s plan is perfect.
Updates on Our Journey
01/10 We are home as of 12/27 Illyana is doing good, when we left the hospital she didn’t require oxygen now she is requiring some, having a complex child is hard there are those days crying is all you got to give, with Illyana its not just her heart it is from top to bottom, heart, lungs, kidney, as well as DiGeorge, there are some very scary days with Illyana her Nissen makes it where she cant throw up, she has spells because she is extremely gassy where she try’s to throw up and can’t, she is doing much better just very complex hoping to get a home health nurse soon, she requires 2 people when traveling she is a handful but very much loved, continue to pray for us as we work through this with Illyana.
12/18 Good morning everyone so Illyana is doing good, she is in some pain right now but is doing good, she only spent a night in PCICU and was moved to PCARD, so they did a procedure for a Nissen to be able to get her gtube, they also injected her vocal cords to see if it will help with left vocal cord is paralyzed and got her ostomy reversed, they are slowly working up feeds right now this is her not being fed in the stomach in the last 4 months.
12/15 We have been just hanging out in the hospital she couldn’t tolerate her feeds going into her stomach so she will be getting a G tube tomorrow morning at 7am. She has been doing so great other wise though.
11/08 After over a month of not holding Illyana, this was such an amazing moment for me, it is hard not really being able to hold your child, it took this long to be able to hold her, being on the vent/BiPAP/CPAP it is extremely hard to hold her because the movement can cause leaks in the pressure, somedays she wasn’t having a good day and picking her up and holding her could cause her to hurt worse, we wants what is best for Illyana.
11/02 Illyana the day after her 2nd open heart surgery, This girl is such a fighter, she inspires us daily to fight along side of her, this journey hasn’t been easy by any means, we are truly thankful for God’s strength that he has given us to overcome this journey.
11/01 Illyana is headed headed off to have her 2nd open heart surgery, the surgery will consist of making the RPA smaller, they will be adding a valve to her RPA, they are also pulling her RPA off of her right bronchiole, she went to surgery at 8:10 AM and did not return to her room till around 9:00 PM.
10/31 Good Morning sorry there hasn’t been an update sooner, so there have been very little things over the past month, somedays there were no changes other days it would be small, it has been up and down we would move forward to be hit right back down somedays, so Illyana’s RPA (Right Pulmonary Artery) is to big, tomorrow they will do open heart surgery on her again and reduce the size of her RPA, so what happens is when she coughs without positive pressure her right upper lobe collapses 100%, with positive pressure her right upper lobe collapses 60%-70% when she coughs, we will give an update when we know more about the surgery.
10/01 Illyana is got to do 2 trial runs on vapotherm for 2 hours each time, she is being weaned from various medications, we have another 2 weeks to wean her off all the medications, she loved being on her vapotherm she is able to move her head around, tomorrow she gets to have vapotherm all day during the day and cpap during the night and see how her gas panels do, she is doing so good today.
09/24 Illyana is doing better today, her lungs look better than they have ever looked, she is such a warrior she has made amazing strives to get healthier, they are continuing to drop her vent setting to wean her off of the vent, this morning they have paused her feeds in preparation to extubate today, we are so excited for how far she has come, we are thankful for all the prayers everyone has poured over us, we will update later on when she becomes extubated.
09/14 Update on Illyana.
She is doing well but she is running a fever and her white blood cell is high so they sent her for a CT scan to check her chest, belly, lungs. She is still on the vent, we will know further plan of care soon.
09/08 Illyana is out of surgery, they removed 10 cm of her large intestine was removed, she does a colostomy bag more than likely this will be reversed, if it isn’t able to we are still going to give God glory through it all. She has rested well today and conquered the nitric machine. resting through the night and we will see what tomorrow brings!!
09/07 Illyana is in surgery for nectrotic bowel, this is more for them to find out whats going on. she is very sick she is a fighter, we are waiting to hear from the Surgeon.
09/06 Illyana is coming off of the meds that was keeping her paralyzed, she is waking up and moving around a little bit, she was put on some diuretics earlier and got a lot of fluid off of her, she is our little fighter.
09/05 She is very swollen right now they have stopped her feeds for 5-7 days, she is stable right now they just turned her paralyzing medicine off and trying to get her off blood pressure medicines because they are low, usually she has high blood pressure, they are still monitoring closely the Venus Gas in her intestines and liver veins. They have surgeon team eyes on her in case it leads to dead bowel, if that happens she will need emergency surgery. Thank you all for the prayers. Please continue to pray for our sweet girl as she is very sick. We can’t have a sleep room at hospital due to the Covid precautions extended another 10 days and due to other families using them the spread of it to the other so very fragile patients is an issue.
09/04 Illyana has been paralyzed, they are needing her to stay still, she will not have her feeds for at least 5 days, Illyana has Portal venous gas in her intestines and the veins in her liver it was an accidental finding, she may have to have abdominal surgery won’t know nothing for a few days on this, they are giving her a blood transfusion as well.
09/04 Illyana is sedated pretty well due to her being getting agitated. They are starting a morphine drip to keep her comfortable from pain and help keep her calm while she is on the vent. Her CO2 levels are dropping but they want to keep her vented to see if they can get her little balloons that haven’t been oope in her lungs to open. She getting the care has been needing. Please keep praying! God is healing her.
09/03 Illyana got intubated today about 2:30 this evening,her CO2 levels have improved since being on the vent. Please keep praying, pray for healing of her lungs and strength to get better and to find out what is causing this issue. Pray for the team of doctors and nurses caring for our baby girl.
09/03 Illyana is stable. She is on bipap now and seems to be responding well, she is about to be sedated a little to put a picc line in, please pray that goes well and she doesn’t have to be incubated her levels are still high. This is very serious and she is very sick, we also need her to heal from this so we can figure out what the underlying issue is that causing her lungs to not release carbon dioxide like they need to.
Please pray for healing for her lungs.
Please continue to pray of our sweet baby girl.
08/27 Illyana is having her Hi-flow breathing treatment, she absolutely hates this one, it is helping with her not coughing as much, it helps force the medicine from the breathing treatment to get deep into her lungs, we are going to make it through this.
08/27 Illyana spent another night in the hospital, she is on continuous feeds for right now she was originally on every 3 hours, she has been off blood pressure medication for over 24 hours still unsure what is going to with this, she is still having episodes where she is sweating and has no temperature, she has a great team of doctors and nurses we are going to overcome this.
08/26 Still in Vanderbilt she still continues to have her attacks, they have stopped medication, stopped feeds twice now put her on fluids, has changed breathing treatments from 3 times a day to 4 times a day, they added in a high flow breathing treatment, please continue to pray for Illyana she has had some pretty rough days she is such a fighter.
08/23 We had the scariest spell today at home, Illyana had a spell where her oxygen and heart rate dropped to the low 70’s, she became pale with cold sweats soaking he clothes temperature was 94.3 degrees around noon, Back off to the ER we go we arrive 10 pm no episodes so far, we are being admitted for a 24 hour observation, off to PCARD we go get in the room around 10:30 pm not even 5 minutes of getting to the room she starts having an attack heart rate and oxygen hit down into the low 50’s.
08/21 Off to the ER again, Illyana is having some strange spells where her oxygen is dropping or her heart rate dropping, at times both oxygen and heart rate drops, when this happens she becomes pale and starts having cold sweats, while at the ER she didn’t really have a spell, 2:30 am we are being released and heading home.
08/13 Illyana is back home from the hospital, she has covid and so does Daddy, Illyana is on the downside of the covid she is on day 5, she is doing great for the most part we just got to get this cough to go away, we are just taking it easy and resting.
08/08 We went to the cardiologist today, we got the approval to try to wean her off her oxygen, like he said this isn’t a 2 week process it’s going to take months to get her off her oxygen.
08/06 Illyana got her first bath in her little bathtub, she absolutely loved being in the bath she smiled so much and didn’t want to get out.
07/23 Illyana is saying Good Morning, She is ready is ready to conquer this world, she is doing well we have had a few little scares but nothing to difficult we can’t we couldn’t handle, the nurses at vanderbilt were amazing they took really good care of Illyana, now we have the blessed to be able to care for Illyana, Amanda has been amazing, she is honestly the most amazing Wife / Mother ever hands down, the love her heart gives is truly amazing, we are truly thankful for her daily.
07/18 We got Illyana’s little corner setup for her arrival, We are so ready to be home and get sweet snuggles.
07/17 Illyana will be coming home by tomorrow, Oxygen is arriving to the hospital today between 12-2 we will have to learn how to use the equipment, then show that we know know to use the equipment, she has come so far and we are so proud of Illyana, we are thankful for the blessings of God and we want him to receive all the glory for what He has done, He is the reason we have been able to be strong and be an encouragement to anyone we have been around, we are thankful for our community that has surrounded us, you all have been amazing, this is only the begin of what God is about to unravel, Thank you all for everything.
We will continue to keep this journey updated over the years.
07/12 Today is a harder day for us Illyana’s heart rate has been on a slow incline, over the last 3 days is was in the 160s now it around 185 – 190 there have been a spike hit 210, her doctor he is amazing he is trying to find the little tweak needed for heart rate to be just right, we are also trying to wean off oxygen she has been holding on to 100cc of oxygen, she DSATs when they try to wean and they go back up on the oxygen, we are Thankful for the Vanderbilt Team, every time mommy holds Illyana her stats are great she loves her mommy.
07/11 Had a great day got to hook Illyana to portable oxygen and stat machine for about an hour, got to go down to the koi pond and have lunch, she passed her car seat test as well today.
07/08 We are off to PCARD from PCICU, finally out of icu now on to the next steps to be able to come home.
07/03 Sorry we haven’t really given an update on Illyana, it has been a very exhausting through this journey to say the least, so her skin color looks better than it ever has, she is being weaned off different drip meds, she has came off the breathing tube and chest tubes and went to bipap and then down to cpap, she may go to vapatherm today but the top part of her right lung collapsed, once that is fixed she will be going on vapatherm, she still has a lot of milestones to hit but look at what God is doing.
06/27 woke up a little bit after her surgery, she is resting a lot will post more later have been extremely exhausted with everything going on.
06/26 10:30 PM Illyana is out of surgery she is extremely tired but is doing amazing.
06/26 5:30 PM they are working on the Pulmonary artery right now.
06/26 3:30 PM they have Illyana prepped & intubated and have made the incision, heart surgery has begun.
06/26 1:50 PM Illyana is heading to the 3rd floor for surgery could take 4-6 hours for the surgery, please continue to pray for us.
06/23 Getting snuggles with mommy after her bath and getting ready for surgery tomorrow.
05/30 – Today Amanda got to hold Illyana for the first time since she has been born, we also got updated with more news, they are trying to lower her oxygen pressure and wean her off the oxygen, if she can be weaned off the oxygen doctors might be able to do a minor surgery and put in a stint to keep airways open and allow her to come home and do major surgery later, if they cant get her weaned off oxygen they may have to do the major open heart surgery sooner than later.
05/29 – We spoke with the Cardiologist this evening, So originally we found out she had TOF/APV that stayed the same but now Discontinuous Pulmonary Branch Atresia was added, which 1 in every 200,000 to 1 in every 300,000 are born with just this one heart disease has been added to the diagnosis, this has increased how rare the condition is from the 0.2% to 0.4% to now a 1000 times rarer than original diagnosis, also has been confirmed Illyana only has 1 kidney.
05/20 – The Doctor told Amanda that she is taking it like a champ with all the pressure, we are getting to speak life in to everyone we come in contact with, this is truly God’s strength Amanda is able to do this, we have got to talk about The Meaning and how God chose Illyana’s name and confirmed it to us.
05/19 – Went for ultrasound today fluid is at 45 cm as of now, in a normal pregnancy it should be anywhere from 15-25 cm, at times Amanda is having a hard time breathing due to the pressure from the amount of fluid, Amanda has received the second round of steroids to help strengthen Illyana’s lungs, the steroids have caused her blood sugar to raise and is having to receive insulin now.
05/18 Noon – We spoke with the Neonatologist we were told that Amanda will be staying in the Hospital until after Illyana is born, they want to keep Illyana in the womb as long as they can for her lungs to be as close to fully developed as possible, they aren’t sure if Illyana is able to swallowing correctly due to them only seeing one kidney, they said it could just be extra fluid and have nothing to do with Illyana as well, they are unsure at this moment what is causing the extra fluid but are putting in extra measures for when she arrives, we will let everyone know more when we know more, please continue pray for us we are taking it one day at a time.
05/18 1:30AM – We finally got into our room we are staying in they are keeping observation of Amanda, the team will be making a plan for the arrival of Illyana, we might be having Illyana in the next 24 hours, Amanda is currently 35 weeks pregnant there is pressure and some discomfort from time to time, we will update everyone in the morning, please continue to pray for us during this time.
05/17 – We went for an ultrasound right now fluids in Amanda’s stomach are 44cm, we are now being sent to the hospital for an evaluation, we are a little nervous right now but my God is in control and is working a miracle right now.
04/20 – We had a follow-up with fetal cardiologist we we’re informed there hadn’t been any changes we consider this a win, right now fluids in stomach are fluctuated between 30cm – 35cm currently is at 32cm, the main concern about this is going into preterm labor, we have a penciled in date for delivery but doctor said if we even make it that long, as far as Illyana we will know more of her journey of repairing her heart once she is her, please continue to pray for healing along side of us.
Please keep us in Prayer during this Journey. Thank you and God Bless
Prayer Board
18 responses to “Prayer Board”
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Dear God,
God we just want to thank you for every blessing you entrusted us with. God we want to thank you for our leaders our community and our church and your love as we have grown closer to you and walk the journey you have placed before us. God we trust you with this journey you have set us on for baby Illyana. God we are praying complete healing over her heart and body we know you’re the ultimate physician. We know you plan is perfect. We love and thank you Lord.
Amen -
I pray God touches her and heals her before birth. Bless you guys and stay strong. Even in the darkest days god is there. God knows how much it hurts cause his son died for us. I love you guys and praying for healing for her.
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Lord, we’re asking for miraculous healing of baby Illyana 🙌 please fill her parents with peace, strength, and love during this new heart journey in Jesus name ❤️ we love y’all ❤️
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Prayers for your baby girl. I love her name and know that God has her in the palm of his hand. Prayers for you and Ronald during these uncertain times hug each other and try to stay strong. God is with you on this journey. Huge hugs and if you need anything just let me know.
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I am so sorry to hear this! So many prayers for u all. God has you and I know you truly believe that. Let me know if there is anything at all you need! Love and hugs 🤗
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Heavenly Father,. We know you are both sovereign King and loving God. We know you shower us with mercy and kindness. You withhold no good thing from us when asked according to your will, and by the authority given us in Christ Jesus. Professing this to be true we lift Illyana and her family up to you.
We place her forming heart and body into your hands for we believe your word: she is being wonderfully made by you Lord. We come humbly before you, entrusting this family to you, that you may move in powerful and mighty ways, as only you can. Our hearts praise you, you alone are worthy! We know you have heard the cries of your children and are faithful to heal and make perfect in Jesus Holy Precious name. -
Dear God,
I want to thank you for entrusting me with your great blessing for be the father to Illyana, I pray that your will be done, I am believing in complete healing in the womb or outside the womb, I pray people will come to know you through this, I pray for Amanda you would give her strength through this, you are the great physician and I pray that your glory is shown through out this journey.
Amen -
Heavenly Father, we love you and thank you for all you provide. We know you are the supreme healer Father and we ask for your healing hand over baby Illyana’s heart Lord. That it be restored to full and normal operating condition. Praying also for peace and comfort for the family Lord. We ask all these things in Jesus name.
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I’m calling on Jehova Jireh the God that heals!!! I’m believing and praying for complete healing in this sweet babies body! Love y’all!
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Jehovah Rapha* I’m calling on JEHOVAH!! Y’all already know!
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Praying for healing In Jesus name. Father you know us individually in the womb. We believe you’re divine healing power, it’s in your son Jesus Christ name we ask that baby Illyanas condition be completely, miraculously healed and leave doctors astounded so that it can be used as a testimony to you’re power, love, healing abilities and the power of prayer. I ask that you keep this family close and comforted through this time. I pray for financial blessings and we know father you will continue to bless them with their daily needs. You are a loving God, a healing God, a powerful God, a great God and we are thankful for the works you do. We put our trust in you God. It’s in Jesus’ Holy name we pray, Amen
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You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous-how well I know it. You watched me as I was being formed in utter seclusion, I was woven together in the dark of the womb. You saw me before I was born. Psalm 139:13-16
Oh mighty Lord, I know you have your hand upon this precious child. I know you have a plan for Illyanas life. My prayer is that you will heal her broken heart. Let her life bring you glory & bring us joy. Thank you Lord for your blessings. Amen -
All of y’all are in my continued thoughts and prayers 🩵
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I ask You to touch my friend with Your power and grace. Heal her precious babies body and heal my friends mind, and spirit from any pain, sickness, or injury.
Guard their heart and mind from any fear or anxiety that may trouble them. Give them peace that surpasses all understanding and calm their stormy emotions.
Give them strength to endure this trial and faith to trust in Your promises. Let them feel Your presence and peace in this difficult time
In Jesus name I pray -Amen -
Praying for healing for sweet baby girl praying for the beautiful family. way maker miracle worker promise keeper light in the darkness my God that is who you are praying God heals.love yall so much beautiful family
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Father,
We know that you are the ultimate physician. You are a miracle working and loving father. We ask that you will use sweet Illyana to show the doctors and everyone she meets what a living, breathing miracle looks like. Heal this precious baby’s heart. We know you have a plan for this precious miracle and we trust you in everything that you do. You see what we can’t see. Your plan is so much greater than anything we can even imagine. We love you and we believe you will turn this scary situation for the good. Lord, I ask that you wrap this precious family up in peace. They are your faithful children and you will never abandon them. I pray that you will remind them of that when they are struggling to see past the valley they are in. We love you and trust you ♥️
In Jesus’ name,
Amen -
Dear God, I pray that you take hold of the surgeons hands and guide them to perform Ily’s surgery. We know that this child is protected and covered through the blood of Jesus. Touch her ❤️ and heal her on her journey 🙏🏿
Amen.
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Praying for Illyana.. what a journey it has been so far for this beautiful miracle baby girl and her family.. Lord.. I know you have this baby and her family in your hands I know you have angels assigned that continue to watch over Illyana.. Father, I just ask that as our trusted omnipotent healer that Your hands touch Illyana in such a miraculous way Lord.. that you would breath Your Perfect Breath of Life through her healing every thing in her body God.. we thank you that she didn’t go home to have an attack but that she’s in a hospital surrounded by people who you have placed so intricately over her care and that You are working so that she will return home healthy and whole Lord.. we know you have a plan and as Illyanas name means.. we know you answer Lord so let us come boldly before you and ask what only You can do.. a miraculous healing God.. please heal this baby.. her heart her lungs her stomach.. every where that this baby needs your touch we ask for it.. we ask strength for Amanda and Ronald and that their story and journey be used to glorify You Lord.. please bless and continue to be with this amazing family in Jesus name I pray
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