A Celebration of Life

“Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.” John 14:1-3

Home Sweet Home

Twenty-four days have passed since my last blog update and so much has happened since then! A few Facebook updates have shown Gabriel’s progress, the turning of 1 month old, and the much anticipated NICU graduation and journey home at 1 month and 1 day! Gabriel has brought so much healing to our hearts since being home for exactly 2 weeks now. He is now a little over 6 lb. and is so laid back and precious. Adam and I had forgotten just how tired and delirious you really are when you wake up every three hours during the night! I also forgot about all the little things that melt your heart- the sweet baby sounds, baby breath, the warmth of a soft little face and head against yours, and the weight of a tiny baby on your chest. These things come and go so quickly, and we are soaking them in each and every day.

You may remember from a previous post that we switched rooms for Aaron and Gabriel. I’m so glad that we did because it gave Aaron more space in the bigger room and Gabriel is now in a room that is smaller and more nursery-size. Aaron now has a big-boy room for his big-boy bed and LOVES it! There is room for toys, his desk, comfy chair, etc.

In addition to heartfelt cards, flowers, meals, breastfeeding items, and monetary gifts, we have been blessed with some beautiful gifted keepsakes. A stunning teddy bear, weighted to be Caleb’s birth weight, from some dear family members; Austin, Taylor, Ramona, Kelly, and Joni. A basket of beautiful faith-based books for the boys, a journal for writing to Caleb, cardinal figure, bird feeder, and remembrance hanging decor, and cardinal bracelet from Amber Fitts and family. An angel figurine and garden heart chime from our St. Louis family. A gifted necklace of Caleb’s actual footprint scanned and etched in a silver pendant from Danielle Cleaveland. All of which will be cherished for the rest of our lives. You’ll see some of these items in various photos in this blog. ❤️

Coins for Caleb

My wonderful third grade team at Florence Elementary joined together and decided to create a school-wide fundraising/awareness drive. We were so humbled by the amazing support and love surrounding us from our Florence family. The students, parents, and staff have overwhelmed us with the outpouring of generosity. We feel thankful for the chance to share awareness of CHD during heart month in February and throughout each year.

Celebrating Caleb’s Life

I never imagined planning for an event such as this. I’ve planned events for others big and small, I’ve planned my own wedding. There is no guide for how to plan for a Celebration of Life for your son. Sharing in grief and sorrow isn’t easy, and celebrating loss is something so foreign. How do you even plan for that? I decided to keep things simple. It means more that we could come together with loved ones to acknowledge this journey. It was a chance to talk about the unimaginably beautiful place that Caleb now calls home.

Adam’s aunts from St. Louis and his brother who lives in Florida flew in to help and be apart of this day. Thank you so much! We were so blessed to have Pastor Don Miller, the lead pastor at Westover, call us and not only share such kind words of condolence, but to also help us with the planning of our Celebration of Life. He was kind enough to ask Pastor David Harrop to speak at this service. David did such a wonderful job sharing God’s word about seeing Caleb again one day and His plan being for everlasting life. After he spoke, I shared what I wrote for Caleb.

I never would have imagined that one day I would be standing here, speaking about the passing of my own child. This isn’t supposed to be the order of things. The hurt runs deep, and the loss is impossible to fully comprehend. How do you let your child go?

These words of pain and grief will likely always linger in weak moments. The sight of twin boys running around, a keepsake stored away, or a cardinal flying by. This journey has been harder than anything we have ever been through. However, in these moments of weakness and in each step on this difficult path, we have never been alone.

God stood with us in the doorway of fear and doubt. He sat with us when we heard news that brought us to our knees. He wept with us when we were told that Caleb would not be continuing this journey with us. He held our hands as we prepared to let him go. He met us to carry our sweet boy home. And He held us as we did the hardest, yet bravest, and most selfless thing we could possibly do- hold our son as he passed into the arms of Jesus.

You see, Caleb and Gabriel were always meant to be a part of our story, along with Aaron. Each son given a wonderful plan, a purpose in life. We believe that through Adam and I, Caleb’s purpose is revealed. Eight days may not seem long to many, however this boy changed our lives forever. Life is so incredibly fragile. It’s precious and significant. If this love we have for Caleb is a fraction of the love our father has for us, can you fathom what we mean to Him?

I will forever remind myself of the things that Caleb has taught me.

– True strength is only possible with faith.

-There is always hope. Even when the outcome isn’t your plan.

-Prayer is the act of faith, in spite of fear and doubt.

-Every single day of your life, be open to seeing His hand in things, in unexpected ways.

-People are good, loving, gifted, compassionate, and are sometimes angels on Earth.

-We are not in control, and surrendering that is so necessary.

The impact that can be made, even in 8 short days of life, is lasting. Once we realized that Caleb would never leave that Cardiac ICU room, I remember feeling desperate to have this child be known to others. I couldn’t imagine that room being the only place, besides our hearts, that his memory would stay. What I didn’t realize, is that through sharing his story, his life and the impact it has made, would reach hundreds of others. He never left that room, however he touched so many. This is a testament to what God can do through us. I am encouraged to share my life, and my love with others from now on in a different kind of way. I am encouraged to think of others in a different light. We were so humbled by the overwhelming love, support and kindness of others and it has forever changed how we see the world around us.

Thank you for loving us and for wrapping your arms around us in our desperate time of need. For walking with us on this path and not leaving our side. Thank you for loving Caleb, and for believing in him during his brave fight here on Earth. We hope that his legacy will be the importance of leaning into your faith to find strength, to deem what is truly important in life, and to look for God’s hand in everything around you. We are stronger now in so many ways because of this strong, brave littler fighter. We are at peace knowing that he is healed, wholeheartedly, in the arms of Jesus and that we will see him again one day. May we honor his life in our daily walk and in our love for one another.

We now want to give Aaron a chance to come up and to release a balloon for Caleb. Afterwards, we would love for you to come and take several carnations to be tossed in the water. We want to take time to see the beauty in the life around us and reflect on what a wonderful blessing Caleb has been to us and what we are to each other.

Aaron released a balloon to honor his sweet little brother. Afterwards, we cut carnations to toss into the lake and reflect on Caleb’s precious life. It was a perfect day, a perfect celebration of a life that made a bigger impact than we could have imagined. I thank God for the chance to honor Caleb and to celebrate what he meant to me and to our family.

I want to thank every single one of you who said a prayer, read scripture, lit a candle, talked about his story, etc. in honor of our precious son, Caleb. I can’t tell you how much it meant to see the candles lighting up my Facebook feed with beautiful words of love and support. I pray that this brings awareness to congenital heart defects and encourages others to support the research and funding for the care of these precious babies and for finding a cure. It has meant so much that you have walked on this journey with us. We felt each of your prayers as you celebrated with us on this special day!

The Ripple Effect

This week has brought healing, tears, heartache and everything in between. As life unfolds after the excruciatingly painful loss of our sweet Caleb, humanity and love has been felt every step of the way. This week I wrote Caleb’s obituary. I put this off until the last second knowing it would be hard. I’ve decided to stop thinking of these things in such a “final” light. We are determined to keep his memory alive, there is no need to feel as though we have lost him forever. It’s not easy, and part of healing means many tears are shed. Putting away things that were intended for him, or for twins, is painful. It causes reflection on what would have been and what will never be. We have to remember that faith doesn’t necessarily remove pain or hurt, sometimes faith says, “I’ll sit with you in it”. God has sat with me many times as tears have fallen in these raw, undeniable moments. I am reminded of a scripture that has always stuck with me…

You keep track of all my sorrows.

    You have collected all my tears in your bottle.

    You have recorded each one in your book.

Psalm 56:8

How precious are our tears to our Heavenly Father?! Our heartache doesn’t go unnoticed. Instead of suppressing it, or living in denial, letting those waves of emotion wash over you is ultimately cleansing for the soul. There is healing in those moments.

I have been reminded multiple times throughout the past couple of weeks of the ripple effect of this experience. I have had the pure honor of reading and hearing of how much Caleb, the doctors, nurses, or experiences that we have shared here have made an impact on others. Hearing that some of the very things that changed our lives forever has changed the lives of others has brought tears of joy to my soul. Sharing the journey that God has brought us to and continues to bring us through has touched us in so many ways. What a light in the darkness.

To view Caleb’s Obituary, click on the photo below…

Child Life

I have been wanting to share something with you that has blown us away since coming home from Levine Children’s Hospital. Right after finding out we would have to let Caleb go, Child Life came in and created keepsakes for us. Flora, a Child Life Specialist, came and helped us figure out how to speak to Aaron about this. It was a worry of mine of how we would need to handle this with a little boy who was so used to saying, “Two babies in mommy’s belly”, “Caleb and Gabriel”, and “My brothers”. She also brought a bag of things for him when he came to see the boys in the hospital. These were items like coloring books, crayons, Water WOW books, trucks, etc. She stayed with him while we were all together to help with the art and to just be with him as he experienced this with us. She was so kind, so gentle. She also brought canvases for family handprint art, as well as plaster kits for creating castings of both Gabriel and Caleb’s feet together. The wonderful team along with nurses creating additional castings of Caleb’s hands, as well as small canvas hand and footprint art the night before our family came. I can’t express how touched we are to have these priceless keepsakes. They are 3D representations of the small hands and fingers we held while we prayed, the little feet and toes we rubbed while staring at this tiny fighter each day of his short life. When you are in the thralls of grief and tears, you are not in the frame of mind to think of what you would like to do to capture the moment, to create keepsakes. The Music Therapy team recorded Caleb’s heartbeat for the tiny EKG prints and for us to listen to as well! The Bereavement Team, Child Life Team, and the Music Therapy Team came in such a loving, gentle way to help us and to give us lasting memories. What a true blessing they were and are to so many families!

I truly appreciate everyone who submitted their address for the Candles for Caleb we are mailing out for his Celebration of Life memorial. We are holding this private memorial on Saturday, March 13th. If you would like a candle or forgot to include your address with your message, please include that information below! We hope everyone will light their heart candle on this day and tag us in a picture to spread Light and Love in Caleb’s memory and to spread awareness for CHD and HLHS.

Gabriel’s Update

Gabriel has been doing so well and on Monday, February 15th he was transferred to the 6th floor- the Intermediate Neonatal floor! He has gone up on how much he is taking by bottle. He is now taking 70% of his feedings by bottle, and if he does this for another 24 hours, he will move into an “Ad Lib” period. This means that for 24-48 hours he will need to meet a minimum amount of breastmilk (approx. 35 mL) every 3 hours but he can have more if he wants. If he does this he can come home! The social worker said that this could be this coming Monday!!! We are praying that he gets to come home if not Monday, then this coming week. We would appreciate prayers for great feeds this weekend and for a smooth transition home! We need this precious boy home with us. There is nothing like those sweet baby snuggles. It is going to do so much for our healing as a family.

I have to share with you about a couple who is next to us in the large open room we are all in on the 6th floor. They are first time parents who are so sweet and have a little boy born at 32 weeks. He has just reached 4 lbs. and we have gotten to know them this week. It has touched me to see them join hands and pray over their child every single time they are about to leave him in the hands of the caring nurses. They pray out loud quietly with hands on their little baby and it just warms my heart knowing that this child will grow up hearing the sound of his praying parents. Today they laid a bible on the rolling cart at the end of his bassinet, open to the book of Psalms. There are some images that stick in your mind and this will be one of them. This mother is battling Postpartum Anxiety and she shared her fears and worries with me. I told her of the gripping Postpartum Anxiety I had after Aaron was born. It was an honor to share my experience with her and see her open up after hearing my battle with it and share her plan for tackling it head on. You never know when you are going to be able to help someone else just by being willing to share your story. I am adding them to my prayers, for her baby to continue to grow without complications, and for her to overcome her anxiety with the help that she is getting for it. I would love for you to join me in praying for this family.

Love and Healing

Gabriel has been doing so well in the NICU at Brenner’s. He is up to 4 pounds and 13 ounces! After regressing on bottle feeds a bit at Levine’s, he is back up to taking 30-40 mL by bottle! We are so proud of this sweet nugget. I spend my time visiting him just rocking him, holding him, feeding him, and soaking up each little moment. Prayers are so appreciated for his health, growth, and for any goal he needs to reach to be able to come home with us!

Healing at Home

This week has come with it’s trials, but we have been surrounded with amazing kindness, love, and support. We had no idea we had this kind of village behind us until faced with the unimaginable. We are so moved by each gesture. I keep saying this, but you just have no idea how humbled we are by the cards, gifts, meals, and messages.

Adam had to go to the urgent care on Wednesday and found out that he has shingles. This is undoubtedly from the stress of everything lately and of course losing Caleb. The body is an amazing thing, but sometimes it just can’t take those difficult moments in life. Please pray that his body heals quickly and that the pain subsides. He isn’t able to visit Gabriel with me right now because of this. Hopefully once it goes away he can resume visits!

Coming home to a nursery that was prepared for twins we extremely difficult. We spent so much time planning and working on it and making it warm and inviting for our sweet boys. I spent some time in this nursery when we got back home. I sat and cried and grieved the loss of a future with twin boys. There stood two cribs, twin themed framed signs and space for two growing boys. I knew immediately what I needed and what we needed in order to move forward as a family. I decided it would be best to move Aaron into this much bigger room and have Gabriel move to the smaller room. This was Aaron’s original nursery and it’s the perfect size for one. I don’t need a physical reminder of what could have been. We already have some extra special reminders from friends, family and Levine Children’s Hospital that are perfect for honoring his memory. This room doesn’t need to be a shrine. We will hopefully finish these rooms up this coming week and want this to be done before Gabriel gets home as well. We know that everyone grieves in different ways. This will help our family to heal.

We attend Westover Church in Greensboro and so many from the congregation have loved on us this past couple of weeks. Another amazing moment occurred earlier this week. We needed our internet wifi adjusted for Adam to start working from home again on Monday. The guy noticed we were doing things to our nursery and moving furniture. Adam explained what was going on. He then asked if we go to Westover. Adam, obviously surprised, said “Yes we do!”. He asked if we just lost a baby named Caleb! Apparently, he was reading the Westover Intercessor Prayer Guide email and saw the section that asked for prayer requests for our family. He said that he had been praying for us. It is such a small world- and God is all around.

This breath-taking framed embroidery was done by Sandy Herman. It will grace our wall for years to come and remind us that Caleb is always our twin, always our baby, and always here with us. What a precious gift.

This week we met with Barry from Cumby Family Funeral Services. I can’t say enough about the gentle kindness he showed us. As we walked into this funeral home, I couldn’t help but think about how heartbreaking it is that we have to walk into this facility to make arrangements for our baby boy. While going through paperwork, he pulled out a paper that contained the handprints and footprints of our sweet Caleb. Tears began streaming down my face. This baby LIVED. His hands and feet, though small, were not tiny. They were the size of a baby that otherwise would be here right now. With us! I keep reminding myself that he is with us. Just in a different way.

We decided to have Caleb cremated and to hold a Celebration of Life to honor his memory. We do not want to rush arrangements for this since we are in the midst of Covid 19 and right now weather is unpredictable. We also want Gabriel to be home as well. We will likely wait until March. Until then, we are making plans to celebrate his life in a small get together. Because so many have reached out to us and have prayed for sweet Caleb, we want to include anyone and everyone who would like to be included in our Celebration of Life. I thought that a nice way to do this would be to light a candle for Caleb. I have purchased red, heart-shaped tea lights. We would love to send one to anyone who would like to join us in this. These will be lit to honor his life and help provide CHD awareness. The day and time will be determined. We ask that when we light these, that you take a photo and tag us, spreading “Love and Light” for Caleb and the CHD community. Please PM me or add your info below with your address in the message section if you would like to receive a candle!

Closer to Home

We are so excited to share that Gabriel was transferred yesterday morning to Brenner Children’s Hospital in Winston Salem! We were able to pack our bags and come home after weeks of being away. It feels so good to be in your own space!

The doctor and case worker at Levine didn’t expect things to be approved so quickly and for the process to go so fast. Either God or his angels at either hospital were certainly helping us out. Gabriel was taken by ambulance to the airport where he was then flown by helicopter to Brenner’s. He’s already taken his first flight! Even though we’ll still be commuting about half an hour to see him each day, it’ll be so worth it!

Our doctor for yesterday and today is Dr. Rodriguez and he is so sweet and complimentary of Gabriel. He shared with us that his son had twins and lost a twin to heart related issues. We are amazed at the connections we’ve made with people who can relate. He shared his sorrow as a grandparent and understanding about what we are going through. ❤️

We came home, unloaded the car and then headed to visit our sweet little buddy. He has his own room and was resting so peacefully when we got here. An evening with Aaron, pizza from the Mason’s and crawling into our own bed was the best way to end our day!

Caleb’s Calling

Grieving the loss of a child is something I never thought I’d ever have to do. Saying the words in the last few days- “We lost one of our sons”…. it leaves you breathless. The deepest hurt, the most devastating experience, a piece of your soul being ripped away. We have laid in our Father’s arms and cried the most painful of tears. There is no map for navigating these waters. Each day brings more acceptance, though it isn’t easy. I am reminded of these words…

God didn’t promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.

I look back at the day we had to let Caleb go and I have no idea how I had the strength to do that. Adam and I both agree that God carried us through every second of that day. It’s so true- He gives you the grace and strength that is needed to get through THAT day. We needed more than we ever have for those impossible moments. Just before we had to prepare to let Caleb go, Adam reminded me of the book I packed, “Guess How Much I Love You” by Sam McBratney- a family favorite of ours. Adam bought this before Aaron was born and has loved reading it to him. He wanted to read it to our sweet Caleb. The strength to get through reading this- it has touched my soul. I will never forget this moment. The tears a father shed for his son. The strength in a moment of such pain. I can imagine what it must have been like for God to have to lose a son. For Mary to weep for Jesus. I will never look at the simple act of reading to our children in the same way again.

The fragility of life, the gift that it is, it has taken a whole new meaning. We hear this often- from people who go through loss. It can sound cliche, but when you go through it yourself, you are changed. See, Caleb’s Calling, his purpose here on Earth, only physically lasted one week. Even if it was brief, we believe the impact was lasting. We feel he came to bless our family, but to also shine a light in the lives of others. We received so many messages- more than we can count from so many of you. I read testimonies of renewed faith, of strengthened belief, and prayers spoken for the first time in years. I have cried over and over reading these messages. THIS is the impact of telling Caleb’s story. Sharing what he has meant to us, what prayer can do, the strength God has given us, and the people God has put in our path- it has touched other’s hearts. Caleb did in a week what some can only hope to do in a lifetime. His life meant something. Not just to me as his mother, Adam as his father, and to our family- but to many others. This was Caleb’s Calling.

God did not intend for him to have to fight for years to come. This was not His plan for Caleb. It was not the plan for our family. But this was in God’s plan- to have a precious little boy bless us with his presence for 8 sweet days. He let us meet this life that was so active inside of my womb- who fought from the inside and continued to fight when he was out. God encouraged me to invite others in to see the journey of his special angel. His people came together to pray for this baby. Prayer warriors prayed intercessory prayers without ceasing. We witnessed the God-given gifts of doctors, nurses, case workers, and hospital staff. We were touched by the amazing timing of God’s messages. Faith was strengthened in the hearts of people that joined our journey- many we don’t even know. THIS was God’s plan. And the journey isn’t over. Adam, Aaron, Gabriel and I are forever changed from this experience. The help we can provide others and the opportunities to bless others are endless. We pray for God’s guidance on how to grieve and mourn, but also how to heal and how to continue to lean heavily on our faith and use it for good.

Aaron meeting Caleb for the first time. The “B” is what Aaron calls a pacifier 🙂

Hope and Healing

One thing that is unique about our journey is the fact that we spend our days between grief and joy. We experience the sadness of losing Caleb but also experience the joy of having Gabriel. We walk into Gabriel’s room and just soak him up. This time with him has helped start the process of healing. Though it’s certainly not his job to get us through our grief, he is motivation to acknowledge our feelings, face the tough conversations, look at the pictures, and walk through the storm. If we don’t do this, we ignore the difficult process of mourning our loss. We don’t want to push this down and not do the hard work of healing. Aaron and Gabriel are perfect reasons to work through these feelings. It won’t be overnight- there will be sadness that will always be there. Through prayer and openness, our family will keep Caleb’s memory alive and honor him by cherishing each other, putting faith and family first, and being a blessing to others.

Gabriel’s Updates

On Friday afternoon, Gabriel was moved from the NICU to the Neonatal Progressive Care Unit, which is a step down and a step closer to getting to come home! As of today, 2/8/21, he weighs 4 lbs. 3 oz. and is growing each day. He is still learning to take his feedings through bottle. We ask for prayers that he reaches his goal of taking all pumped milk through bottles without having to put some through his tube. He is just the sweetest, most precious little baby. We are just in love with this sweet soul! We also have some exciting news- he is almost through the whole approval process of being transferred to Wake Forest Brenner Children’s Hospital in Winston Salem! This would mean that we are able to come home!! Our daily commute would be about 30 min. to be with Gabriel, however being able to be at home makes it more than worth it. We are hoping this transfer can happen by Wednesday of this week. Please say prayers this transfer happens sooner than later. Being home, even while waiting for Gabriel to join us, will help our family to be able to heal.

Our Village

I want to acknowledge something that has made such a huge impact on me, Adam, and our family. We have experienced the outpouring of love, support and sheer selflessness from every direction. Close family and friends, friends we haven’t seen in forever, people we don’t even know, our village of support is a mighty one. We can’t begin to express the impact this has made on us. I have many messages I haven’t been able to respond to yet and I will in time, I promise! I assure each of you we have read every single one- likely multiple times. These emails, blog comments, texts, FB comments, FB messages, etc. have helped sustain us. They have spoken to us in the most broken moments and difficult time. We thank you for taking the time to reach out to us. The gifts, flowers, cards, and monetary donations- they have touched us and your generosity has left us speechless. Thank you. We have felt the love and your prayers give us strength. Thank you for continuing to pray for us during this time of grieving and healing. We are humbled beyond measure. 🙏🏻

Our Heart Warrior Has Gained His Wings

Today we experienced a pain that you cannot describe. A deep sadness that physically hurts and changes every fiber of your being. Today we had to let our sweet Caleb go.

Early Thursday afternoon, we were told by doctors that the head ultrasound they did revealed that Caleb suffered a severe brain bleed, most likely occurring during the night. It covered about 6-7 cm of his brain. It’s the kind of bleed that leaves permanent and devastating damage. Severe developmental delays, the inability to walk, talk, etc. Coupled with his severe heart defect, this was not something Caleb would survive. The blood thinners that Caleb had to be on to go through surgery and keep the flow to the stent in his heart open likely caused the bleed. There is a risk for brain bleed since preemie’s blood vessels are so tiny and fragile. Any future procedures on his heart would be impossible due to the fact that he would need those blood thinners, and most heart procedures are done on bi-pass, which requires them as well. No surgeon would ever perform them since he likely wouldn’t survive them and this wouldn’t improve his quality of life. Brain bleeds are unpredictable and you cannot treat them.

The feeling of being told something scary and serious is one that seems to slow down time. You know that what you are hearing or about to hear is going to hit like a tidal wave, but your mind and body fight to process this. I hate that feeling of not being able to breathe, the ringing in your ears, and a racing heart. This happened when Dr. Bailey said she needed to share some difficult news and that a team would like to meet with us in the conference room.

Walking in that room and sitting with doctors that had their heads hung and hands clasped together- it was a heaviness that was tangible. I sat staring at the NICU doctor with over 30 years of experience as he told us about these devastating findings. At one point, my mind put this all together. I lunged forward in my seat and struggled to cry out- “You’re saying he’s not going to make it?!”. He reached for my hand, shook his head, and said, “No, I’m so sorry”.

Adam and I sat and cried so hard with these doctors all around, the sadness in their eyes mirroring the devastation in our hearts. Why had things gone down hill so quickly!? He was doing well, we had good reports each day! I could feel the waves of realization washing over me. The desperate feeling of trying to cling to something as you’re falling. This was it. This was the one worst thing we could have imagined.

Dr. Engstrom’s words quietly repeated in my head- “When you’re gripped by fear and think that the worst of the worst is happening, think about what this truly means. If we were to lose him that means he gets to meet the face of Jesus”.

“There is a sacredness in tears. They are not a mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition and of unspeakable love.”

― Washington Irving

We sat together after they left the room. We cried in each other’s arms. We cried painful tears. We cried out the “Why’s?” and “How’s?”. We desperately tried to put a firm foot down to stop the spinning world around us. After some time we went back to his room and spoke with several people about how to even begin moving forward. Through tears we spoke about when we should let him go, having a baby dedication conducted by the chaplain, the Childlife team to help Aaron and finally with the amazing nurses that arranged approval to have our family come to see not only Caleb, but Gabriel as well. It would be arranged for them to bring him to be with all of us and to lay with his brother one final time.

We were told that there was no rush. We discussed what would happen to his body if we waited. None of these scenarios were something we could fathom putting him through for the sake of our grief. We knew that what he deserved was to be in the arms of the Father, to see Jesus face to face. Caleb fought from the time he was first developing in the womb. He fought so hard the day he was born. Doctors fought to keep him alive. He continued to fight while lying there with so many tubes and machines. There was no need to fight anymore. God didn’t want him to have to struggle or fight any longer.

This morning, Adam and I had the chaplain come and do a baby dedication for Caleb. We committed him to the Lord and prayed over him. The day before, the chaplain shared with us that he himself is a surviving twin. What an amazing thing this was to hear. Dr. Schwartz came by the room (The other interventional cardiologist that conducted Caleb’s first surgery and spent hours afterwards holding the bleeding entry wound on his leg from the catheter procedure) and spoke with us, offering condolences and expressing his sadness for Caleb.

Aaron and grandparents were able to come in and meet our sweet boys. We shed tears together, celebrated together and spent time loving on each other during this unimaginable situation. We made a handprint canvas, created castings of hands and feet, and held these babies tight. After family left, it was time to do what nothing in this world EVER prepares you for- letting our baby go. There is no pain that matches this. There is no way to prepare. You are forced to reimagine your world without him when you spent so long imagining him in it. You are losing not just a child, but a lifetime you’ll never get to witness and be apart of. The pain of this is gripping and one you know that will never go away. A pain you learn to live with- and hopefully use to create some good someday.

Our dear friend Amber Scavo said this to me- “Remember you are on holy ground- that tender place where the veil is pulled back. It is like nothing you will ever experience, but God will meet you there. He is faithful and He is good. You can do this. You are Caleb’s mama and daddy and exactly what he needs in every way”.

We let him go in the most peaceful of moments. We talked to him and prayed with him and cried for him. We experienced peace as we knew he was meeting Jesus and finding a peace like none other. We gave him back to God. We know we will see him again and embrace this sweet boy who is now “Whole-hearted” and completely healed.

A question we all ask in dealing with death, especially untimely death, is “Why?”. We have talked about this repeatedly since Thursday evening. They truth is, in Caleb’s case, I feel that the purpose of his short time here on Earth was to make an impact and impression on not just us as a family, but others as well. Even people we do not know. I never anticipated using a blog to process and cope with this journey. I never anticipated sharing it. But through telling his story and the story of these twin boys, we have experienced the most amazing love and have gotten to share the most amazing love of the doctors, nurses, heart warrior families, hospital staff, and everyone who has reached out to us. For our family, he has changed our lives completely. You realize how fragile life truly is, what is important and that we can choose a side of the coin. We can choose to walk through this world with the incredible faith that has brought us so much strength. It isn’t easy, but it will bring you through the most unimaginable times you can’t even fathom going through.

We would like to ask a favor from anyone and everyone who has followed our journey, even just recently. We would love for those of you who feel comfortable, to share with us how Caleb and this journey has impacted you. We know you never got the chance to meet him, but we are so touched to have heard from several of you that he and his story, and the story of these twins has made a difference. Whether it be a comment on this blog post, an email or Facebook message, we know that the week he had on this Earth was impactful.

Thank you for every single prayer, message, text, gift, etc. We are overwhelmed and sustained by God’s grace and the blessings you all have been to us. We will stay in Charlotte until Gabriel graduates from the NICU and is able to come home. I will continue to update with how he is doing, arrangements for Caleb, and prayer requests for the difficult days to come. Please continue to pray for us. We need it now more than ever. God has wrapped his arms around us and we know each of you have as well. ❤️

We Are Weak, But He Is Strong

This blog has been very therapeutic for me. It has been a place to process the most difficult time in my life, to experience and celebrate strengthened faith, to pray, and to hope. But it has also been a place to be vulnerable, to be honest, to share pain, heartache, and weakness. Tonight I cried HARD. Not because of any bad news or any particular event, but because this is HARD. I miss my normal day-to-day life as I knew it. I miss my sweet little boy running up to me with joy in his voice as he greets me. I miss decompressing from the day as a family, Aaron playing and showing us how much he knows and has learned. I miss the dogs curled up and being snuggle bugs. I miss the life we have built together, so bad it hurts. I’m sad that life changed so quickly, even somewhat knowing it would but not how it would play out. I know this is part of the process. I’m blessed to have such a wonderful family and life that it feels like I am mourning something huge. I know that amazing things will come, and my focus and faith will replace the tough moments. Sometimes letting it out, naming it, and letting yourself feel those overwhelming things just has to happen.

Twin Updates

We walked in to see Caleb with his eyes partially opened! After lowering the paralytics (muscle relaxers that were sedating him), he started moving his hands and feet and eyes a bit! He is still sedated quite a bit to allow the doctors and nurses to control as much as they need to for his healing, but it was so good to see this sweet baby moving a little. I’m not going to lie, it’s tough seeing him lay there and fight. No parent wants to see all of these tubes and machines or see their baby to not be able to interact. But when you realize that he almost lost his life, these small precious things need celebration!

Here are some medical updates and prayer requests:

Caleb is initiating breaths on his own. They were concerned that with lowered paralytics, he would try to breathe too fast. He is breathing over the ventilator but his blood gases are doing very well so it’s going fine! He is now taking 1 mL of breast milk every hour! As long as this doesn’t seem to be too much for his digestive system, kidneys, etc. then they will continue to give it to him. It’s such a blessing to know he’s getting pumped milk. The cardiologist, Dr. Sliz, who was working today, came by to chat with us. He wanted to share that the fetal echocardiogram and initial atrial septum stent information was shared with the cardiologist, Dr. Wayne Tworetzky, at Boston Children’s Hospital. After reviewing everything, he offered the opinion that Caleb would probably benefit from a Hybrid procedure. In previous posts, you may remember that I shared the different procedures that are used to fix varying degrees of HLHS. A 3 surgery repair, including the Norwood, Glenn, and Fontan procedures would create a single ventricle heart. Sometimes the Norwood and Glenn are performed and a biventricular repair is done to create a two-ventricle heart. Then there are variations that can lead to either result. Sometimes a staged bivent repair is done to get to two ventricles. And in Caleb’s case (possibly), a hybrid procedure can be performed where the PDA either receives a stent to remain open or prostaglandins (What Caleb is on now). A band is then placed around the pulmonary veins to control the amount of blood flow to the lungs. They don’t want too much blood going to the lungs and not enough to other vital organs. The Hybrid would allow Caleb time to grow and develop. There’s really no way to predict what that left ventricle will look like a couple of months from now so the Hybrid is a good safeguard from eliminating potential options, like the bivent, down the road.

They are bringing up Caleb to discuss these opinions in the big conference meeting they hold on Tuesdays where many cardiologists and surgeons meet or call in virtually at Levine Children’s and surrounding areas. Dr. Walsh will be on this call.

Some things that they are currently monitoring…

Something called NIRS monitors levels of oxygen in the blood used by vital organs to determine if they are processing too much or too little oxygen. Doctors and nurses really only use these levels to see trends. The body naturally will respond to unbalanced levels by delivering that blood and oxygen to the most vital organs. Sometimes the kidneys can be affected by this. Caleb’s kidney numbers were a little off so they are going to monitor bloodwork. They discontinued the Lasix since his urine output was good and they noticed that the elevated kidney levels started trending down so this a good sign!

They also sent off some blood work after noticing his white-blood-cell count was elevated. This doesn’t necessarily mean he has an infection, it could be the body’s response to stress or trauma, etc. He hasn’t shown signs of a fever or other infection indicators but they want to catch and treat anything super early if it does come up. We would appreciate specific prayers for there not to be any infection and for his kidney function to improve and trend within normal ranges. 🙏🏻

We walked in to see Gabriel and had to look around because we weren’t sure where he went lol! He was out of his isolette and in a bassinet! This boy is wanting to make so many strides! He continues to do well each day and has moved towards long-sleeved preemie onesies with a swaddle blanket and hat to see if he can stay warm and maintain a good body temperature outside of the isolette. He’s was a slow eater today but it meant more time for snuggles! Daddy got to change a poopie diaper and it made for a pretty humorous moment. We are loving these snuggles as it gives us a little boost while at the hospital. Gabe has moved up to 35 mL and is drinking most bottles. We pray he continues to make strides and get bigger and stronger each day!

Tiny Warriors

It is truly amazing to see these two precious, tiny boys who grew from a few cells to living, breathing babies. Just holding their hands, so small in our own hands, makes the miracle of life so much more real. We received these adorable onesies from one of Adam’s coworkers and his wife, who is a NICU nurse. Caleb is our tiny heart warrior, and Gabriel is the perfect support buddy. They are already teaching us so much about life. Life is worth fighting for and the support of others is absolutely essential in the journey.

Humility in the Presence of Humanity

Adam and I have experienced the selfless generosity and kindness of an overwhelming amount of individuals in the past fews days. It has brought us to our knees and left us speechless and in tears. We are not people who like asking for help or putting anyone at an inconvenience on our behalf. This is a completely humbling experience that has forever changed us. You may not realize it, but we read EVERY SINGLE comment, message, text, and email. We cry from being so touched, we just can’t help it. Every time we hear or read you are praying for us and our boys, every time you check in to see how we are doing, the food ordering/delivery gift cards, the cards, the snacks and gifts of comfort, and every single donation to the GoFundMe organized by our dear friend Tina, we stand in awe of each act. Each person took time out of their day and/or money out of their pocket to help support us during this extremely difficult time. We don’t take any of this lightly or for granted. Please accept our deepest appreciation and gratitude for such generosity. We see God’s blessings through each and every act of kindness. It is something we look forward to passing on and “paying forward” to others in our position one day.

Gifts from Anonymous Heart Warrior Families left bedside in the CVICU. Thank you so much!

Twin Updates

After saying goodbye to Aaron (the tears were flowing), we headed back to Charlotte to see the boys and get settled. We went to see Caleb first, however he was getting a new PICC line placed in his arm so we went up to see Gabriel. Gabriel took most of his pumped milk by bottle last night and today. If he’s super sleepy or eating slowly, they will take what is left and use the feeding tube he has through his nose. They have upped his feeds from 25 mL, to 30 mL and tonight at 35 mL. This is pretty quick but he is doing really really well so they are letting him take the lead.

His nurse today said that she calls him, “Dr. Ross”, because he is doing so well and is so “advanced”. Not going to lie, that would be pretty amazing if he grew up to have a job helping heal others. Gabriel no longer has any IVs, yay! He is just the sweetest, calm little boy when we are holding him and feeding him. He amazes us as well as the nurses and other staff with what he is doing at 33 weeks. We were told that if things keep going this well, he will likely be able to go “home” with us in the next week or two!! What a blessing!

We were informed that after a second attempt at getting the new PICC line into the tiny vein in the tiny arm of Caleb, they were successful! This new line being in his arm allows for the doctors to take out the current lines that are running through his bellybutton. It lessens the chance of infection and allows for better levels of medications to be more accurately administered. It will also allow this area of his belly to heal. Caleb’s paralytics (medications that help keep him sedated) are being lowered to allow his body to wake up a bit. Earlier this week he was trying to move too much and breathe too quickly on the ventilator. They want to see if he’ll tolerate it better this time around. It helps us to see how his breathing responds and we are hoping it isn’t too fast. It’s important that they blood gases remain in the specific range they want him to be in, ensuring his body isn’t working too hard and keeping the Co2s and oxygen at the right levels. We are asking for prayers for this process to go smoothly, helping him continue down this path of recovery. If his breathing is too fast, they’ll likely up those paralytics and wait a bit longer, going at his pace and letting Caleb lead the way.

Caleb’s diuretics are still working well and he is urinating that extra fluid and swelling continues to go down! His bilirubin levels are improving and the jaundice is responding to the light treatment! Thank you for your continued prayers! 🙏🏻 We continue to hear positive things and pray that each day he makes these little strides that get him further down the path of recovery. We are celebrating these small triumphs and celebrating each day. God certainly hears all of our prayers!

“I also tell you this: If two of you agree here on earth concerning anything you ask, my Father in heaven will do it for you. For where two or three gather together as my followers, I am there among them.”

Matthew 18:19-20

Mommy/Daddy Update

After our visit with the boys, we were able to come to Homewood Suites to get settled. We want to thank our social worker, Diane, at Levine’s for helping guide us and secure lodging near the boys. We were able to choose between the Ronald McDonald House and Hospitality House. Because of Covid 19 restrictions, both locations do not allow anyone under the age of 18 right now and limit the number of people in each room to 2. Hospitality House however has partnered with two hotels to help with flexibility for larger families. This option allows us to have Aaron to come up and stay with us along with the help of grandparents while we are at the hospital. This togetherness is so crucial right now and will help Aaron with a change that is going to be huge in and of itself- being a big brother! Since Gabriel may get discharged in the next week or two, it helps us have flexibility to stay nearby and not have to share in communal areas during this tough time with the virus. We are so fortunate that Madelyn’s Fund has helped us with the cost of 5 nights here. We will reassess after that timeframe and determine if we will continue to stay here at Homewood.

Several have asked for the address and suite number for where we are staying so I thought I would include it here in the blog.

Homewood Suites

4808 Sharon Road, Charlotte, NC, 28210

Suite #403

Among the precious gifts we have received, both boys were also given Journey Beads for their time in the NICU and CVICU. Each bead represents a milestone in their hospital journey. I just love that they do this as a way to remember and celebrate the accomplishments of our tiny fighters! We also received two knitted preemie blankets. I can sleep with these at night and keep them close so that when they have them in their hospital rooms, they can sense that mommy is near. What special items that we will treasure forever! ❤️

One Day at a Time

This month will forever mean more to us than it ever has in the past. Many of us see awareness signs and graphics and briefly think about it and then move on. I am certainly guilty of this. It doesn’t hit home until the sign or graphic represents you or your child. We have learned so much about CHD and feel privileged to share the awareness of this with others. ❤️

Twin Updates

We spent time with our sweet boys for a good part of the day. We went to see Gabriel who currently weighs 3 lb. 13 oz. Our nurse today was delighted to share that Gabriel has been drinking his pumped milk each feeding and is taking bottles regularly. He has moved from 10 mL to 25mL and is at 30 mL tonight! He will soon have his feeding tube taken out since he doesn’t really need it if he’s taking bottles for each feed. They all are so impressed that he is taking bottles at 25mL regularly now this early on. We are so proud of him! Adam got to feed him today and he did such a good job. We both think he looks like Adam 😊

We walked into Caleb’s room today and I felt more at ease. I really appreciate your prayers for us and especially for the calm I have needed to overcome the anxiety felt when walking through those doors. We celebrated some really positive things today! First of all, Caleb had his pericardial drain removed and he has done really well. The surgeon removed it and they will watch the healing of this entry. Today, Caleb has done really great on the diuretics and is producing a good amount of urine. As an added bonus, he’s been able to do this without the blood pressure meds (epinephrine) which they stopped last night. This all means that there is a good reduction of fluids and swelling in his body. They wanted to lower the PDA meds (prostaglandins) so that the PDA, though crucial right now, doesn’t remain too open. They don’t want too much blood to go to the lungs. They lowered this at 9:30 am this morning and will monitor the blood gas levels today and moving forward to make sure it’s effective and he is tolerating it well. We are celebrating these small strides today and giving God the glory. He is working through all of your prayers of love and support and we can’t thank you enough! One prayer request is for his bilirubin levels to go down. It is normal for babies, especially preemies, to battle jaundice. He currently is laying on his blue light and has the light above him as well to help with this.

Mommy/Daddy Update

Today we were discharged from the hospital! We have been able to work with Hospitality House and Madelyn’s Fund to secure our stay at Homewood Suites on 4808 Sharon Rd. close to the hospital! We will be here for the week and regroup after that. I woke up today just really struggling with missing Aaron. We have been so fortunate to have grandparents help with him and he loves them so very much. The week before I went into labor, I was in the hospital for a couple of nights and a few days. I was admitted Wednesday night of this past week and finally left today. I was only able to Facetime with Aaron and I think I just hit that point today. Instead of checking in tonight, we decided to come home and surprise Aaron by picking him up at daycare. We have spent the afternoon and evening with him and will take him to meet grandparents so we can head back to Charlotte, visit the boys and check in to Homewood Suites.

I can’t explain how much this fed the soul. I’m crying as I write this because on top of everything we have been through over the past several days, we have, for the first time, been away from our sweet boy for this long. It adds another layer that creeps up and takes over. Even in a handful of days, we feel like he has changed so much. He’s absolutely precious. He just amazes us with his vocabulary, conversation, fun-loving personality and we quickly realized how much we crave this each day of our lives. Being without it has magnified our situation of being out of our “norm”. At first, right after tucking him into bed, he sat up and said, “I need you mommy and daddy” in such a whimpery voice. It just broke my heart. I knew this would be a difficult journey. I told myself that it’s ok, it will be tough but we are tough and will get through. Today though, I was weak. And that’s ok. We tucked him in again, reassured him we were right around the corner, closed his door, and I sobbed in Adam’s arms. I will cry tomorrow when handing him off. I will cry on the way to Charlotte. And still, that’s ok. It doesn’t mean I’m not strong. It doesn’t mean God isn’t holding my hand when the tears fall.

I will never forget each part of this journey and I pray that I can help someone else one day when we are on the other side of this mountain. Tonight I pray for peace and strength. 🙏🏻

A Birthday Unlike Any Other

Adam and I sat in awe yesterday evening, simply floored at the outpouring of love and support for our boys and our family. There aren’t words to adequately express our gratitude. I have been moved to tears throughout last night and all day today. There are times that God watches you, walks with you, and carries you. He has been carrying us through these last few days and He has blessed us with each of you and your prayers to help in doing that. Every single prayer you are praying on our behalf, lifting us up, is something we treasure more than you can imagine. To have friends, family and people we don’t even know take the time to do that, is one of the most humbling experiences there is. So before I update you on the boys today, please accept our most sincere gratitude for the love, support and generosity each of you have graciously given to our little family.

We are technically on the 8th floor of Carolina Medical Center and Levine Children’s Hospital is connected to us. To see the the boys, we have to get daily badges to get into the Children’s Hospital side. It takes a good amount of time to get to the NICU to see Gabriel on the 7th floor of LCH and then to get to the 6th floor to see Caleb in the Cardiac ICU. It’s not easy since they aren’t connected in the way you’d imagine. We went to see Gabriel first. When we got there, he had ripped out his own IV and they were replacing it. It had just been changed and he was getting a diaper change when we got there. He was a bit awake and the nurse asked if we wanted to feed him his first bottle. He did SUCH a great job at taking his first bottle! We are so excited to see his progress and how well he was doing! Adam is the sweetest husband and daddy and asked if it would be ok if the nurses would take up a sign on their beds wishing me happy birthday! The night-shift nurses made signs with footprints and it was JUST what I needed! This sweet boy is definitely helping us emotionally and mentally during the tough moments. Dr. Engstrom was there and walked up to us to chat. I thanked him again for his wonderful visit with us and his prayers. He said, “I never want to leave the Lord out”. He is just the sweetest.

We then went to visit Caleb in the CICU. One thing I know I am going to have to work on and pray about is the PTSD I feel when approaching his room. Our experience the day after birth when checking in on him and hearing Dr. P discuss mortality left me very raw. I have been working to overcome that and remember that God is in control of the plan for that sweet baby. We walked in and saw that Caleb has a new light to help with jaundice and his bilirubin levels. His blood-gas levels are improved (they monitor this for oxygen and carbon dioxide in the blood). They gave him lasix to help him pee more and get rid of the extra fluid in his body from surgery and recovery. This made his blood pressure drop a bit last night so they gave him a little epinephrine to help support his blood pressure. This helped his body process the lasix much better today! They noticed some bruising in his belly and wanted to get an x-ray to make sure there wasn’t an issue with the intestines, infection, etc. and they actually got to look at it when we were there and saw that it was normal. This could just be from the blood thinners he is on, etc. We are thankful it didn’t show something alarming. Today he gets the pericardial drain out! This was the drain that was used to remove pooling blood around his heart when it was knicked somehow during the initial surgery. There has not been any more blood to collect around the heart so they get to remove that. He also gets to be taken off of antibiotics today. Tomorrow, they are going to lessen his sedation to see how he does and to see if his stable vitals continue to remain stable (even though it is with a lot of support). They want to go at his pace and they want to make sure that his body’s only responsibility right now is to grow, to relax and recover.

We got to meet some more nurses and doctors today- Sharron and Dr. Jennifer Bailey. She was so great to give us a detailed report and encouraging news today. I brace myself- I think it’s human nature. Even with a strong faith and belief in God’s promises, it doesn’t mean that we won’t have fear or anxiety. What is important is Who you run to or What you run to in the midst of those emotions. I sat and prayed for that sweet baby and spoke out loud about God’s blessings and His provision for Caleb. Proclaiming these things as that fear creeps up has helped me replace those emotions with encouragement.

Many of you have asked for things that we can share for specific prayers. I know God loves when we call upon Him for specific requests, trusting that He can provide what we deem is impossible for us to handle. Giving these things to him, we are asking for prayer for…

-Caleb’s body to grow stronger each day to be able to handle each day.

-For his reports to show progress in the right direction.

-For Gabriel to continue to do so well and to continue to lift our spirits.

-For me to overcome the PTSD that comes with walking into Caleb’s room.

-For our hearts, as parents- seeing a preemie ICU bed with many tubes, lights and machines. Seeing Aaron on Facetime only right now and missing him so much.

Thank you guys for being our village. We are trying to comment and respond to as many messages as possible and just love receiving these bits of encouragement throughout each day! Thank you isn’t enough- you all mean so much to us!!