Promises

It seems I will forever be starting my blog posts with apologies. I'm so sorry, again, for the delay in updates. I know that if I updated more often it wouldn't be such a daunting task, but that never makes it any easier to get started. It's honestly just so hard to write, to put my thoughts in such a tangible format. I try so hard most days to keep it all in, and it's difficult to let it flow freely enough to write about sometimes. I hope that it gets easier as time passes, because this blog has been so useful in many ways.

My pregnancy is still progressing, right on track. I am a little over thirty weeks now, although I look like I passed forty a while back. We've had our share of hiccups and speedbumps, but overall things are going well. We were scheduled to go in for a follow-up echo on Halloween, but our cardiologist had to reschedule due to an emergency. I was pretty disappointed, but we'll schedule another appointment with her, hopefully when I go in for my next ultrasound at 32 weeks. I'll let everyone know what we find out, although I know I'm no longer reliable for timely updates. I'll try my best!

We are still collecting items, gift cards and donations for the care packages we're putting together for the families who are spending the holidays in the hospital this year. Please see my previous post for a full list of items we are looking for and the address, or send whatever you wish. Some of you have asked if monetary donations are okay, and yes, we will take anything. We can use the donations towards gift cards or any of the other items we need. I would like to have everything put together by the end of the month, so the clock is ticking. The hospital and the families there will always hold a place in our hearts, and we just want to be a part of paying the kindness forward. If you are able and willing, we would love to include you in our efforts.

We made a trip to Dallas last month to visit an old friend from CMC. While we loved all of the staff at the hospital, we became especially close to a few of the doctors and nurses. Dr. Koch is one of our favorites, and I still thank God that he was there with us for the last few days. We met him for lunch one day a few weeks ago and talked about those days. We also went over the autopsy report, because I'm one of those people who need detailed answers and explanations for everything. I won't get into all of those details here, because Holden had a lot going on in that little body of his. To make a very long story short, it was all related to his heart, as we suspected. His own heart gave out before a new heart was made available. We knew, but it still broke my own heart to see it in black and white. I guess I always thought that his angel heart would somehow arrive just in time to save him. That didn't happen, and four months later, it's still so challenging for me to accept.

This experience has shattered me, and I don't know if I'll ever be the same person. Honestly, I don't know that I want to be that person again. As much pain as I live with, I wouldn't give up the time we were given for anything.

The process of healing is so unpredictable. Even when I have good days, I feel slightly guilty. Like I don't have the right to feel normal anymore, because nothing is normal. Creating a new normal is an uncertain task, at best. The actual act of living takes a long time. Grief makes me not want to do anything but survive at times. Actually living proves much more difficult. But somehow, we always manage to make it through to another day.

My birthday is tomorrow, and it's yet another bittersweet day for me. My birthday gift last year was getting to hold my baby after his surgery, for the first time in a week. I would give anything for that same gift this year, but so much has changed.

A year ago, we were sitting in the CICU, waiting to see what would happen with Holden and his heart. Four months ago yesterday, we left that place that now holds the worst memories of my life. At least, we tried. You can't leave a place like that, memories like that, and not take some of it with you. I remember everything. The sound of the bedrails. The beep of the monitors. The smell of the soap. The hope, and the heartache in every corner of every room.

I'm sure it's not easy for any parent with empty arms to walk away from the memories, even when they torment. They're all we have. I know that others who have lost babies and children share my inability to separate sorrow from joy in life. I don't know that they'll ever be divided again, they are so tightly woven together.

I wholeheartedly believe that Holden is at peace with his Father right now. I believe, but I can't truthfully say that it always brings me peace or comfort. I know it should, and I wish it would. I would be lying if I said that I don't wish him back to me hundreds of times each day. Even knowing where he is doesn't always fill the void. I just want to hold him in my arms again, and I'm clinging tightly to the promise that one day I will.

My heart will always feel the void our Holden left behind, but another part of my heart is full of hope for the miracles of the two big sisters he left behind, and this new precious gift we never planned. Holden will always leave a place in the middle of our family that is so painfully empty, even as the rest is joyfully overflowing. That's yet another example of God's grace and mercy at it's finest... He makes my cup overflow, even as part of it is missing.

Holden will never return to me. Those words define my life right now, and I imagine they will define the rest of my life as well. He will never return to me. But one day, I'll go to him. My arms will be filled again. Not in the familiar little boy way that I remember so well and long for, but so perfectly different. Thank God for the promise of eternity. To believe in His promise in spite of our pain is a gift, and what a beautiful gift it is.

Long overdue, and long

It's been so long since I've updated this blog, I'm not even sure where to start. I guess the biggest news (for those of you who aren't my friends on Facebook) is that this baby is actually a boy- not a girl as we initially thought. We had our day full of appointments with the specialists a few weeks ago, and he looked perfectly healthy! The cardiologist did find one very tiny issue in his heart, but we're fairly confident that will resolve on its own. We are so relieved to know that this little boy is healthy and whole. We are painfully aware that many children aren't blessed with that gift, and we are so thankful. (On that same subject, a few of Holden's heart friends are facing surgeries, illnesses and scary unknowns this week. Please dirty your knees on behalf of these children and their families as they make it through the next few days.)

This past week has been pretty rough emotionally. I've been up and down (a phrase I overuse a lot these days), and the pregnancy hormones don't help my mental state at all. I have the highest highs and the lowest lows, and I don't know when that will get better. We're starting to get excited about meeting our newest blessing, but it's hard to reconcile that excitement with the grief we still carry. How is it possible to be so empty and overflowing at the same time? I'm not sure, but it is. I live it daily.

We needed to replace the floor in our bedroom before the baby gets here, so Trent and a friend got it done last week. I love the new and improved floor (that doesn't buckle and cave when we walk across it), but the downside to the improvement was clearing out the room and then getting it all back in. It's been a great opportunity to organize and pack away things we no longer need or use, but of course, Holden's things were included. Going through all of his stuff was very hard. Deciding what to keep out and pack away was even harder. It needed to be done, but relegating his entire short life to a box in our closet was heartbreaking. Even though his absence is so very real, it still seems very unreal at times.

One year ago today, we were on our way to Children's Medical Center in Dallas. Holden was scheduled for his first heart cath the next morning, and we were staying as guests on the 8th floor the night before his procedure. The cath was the first step on the way to his big open heart surgery, and while we dreaded the whole process, we knew it was a necessary one. It's hard to believe now that 365 days have passed since that first step.

Now, one year later, the journey has changed. It's far from over, but it's no longer the same path we started out on. We're all more than a little scarred, a little reverent about the events of the past year. Truth be told, sometimes I'd delete some of it if I could. And truth be told, I'd do it all over again- without question. I only partially understand the miracles that were made ours throughout this journey. And I'm ashamed to admit I've spent the last few months losing sight of those miracles.

I've spent a lot of time since the beginning of July feeling angry. I've been so wrapped up in the grief of what is missing in our lives, I've lost sight of the many, many miracles that have been gifted to us. I have two beautiful, healthy girls. I may not get to see them every day, but they are happy and growing into amazing little women. We have a healthy rainbow baby on the way, an unexpected blessing after the storm. We had 17 months with the strongest, most inspirational little man on the planet... My very own Braveheart. These are all miracles, and my anger has prevented me from being properly thankful for them. Being angry is exhausting. It's gotten me nowhere. Nowhere I want to be, anyway.

So I prayed, for the first time in a long time, to truly be done being angry. I prayed for understanding. For peace. I prayed to regain my vision of Holden and his purpose. Will my prayers be answered? In time, I believe they will. I don't know how much time... It isn't up to me. Getting rid of the anger won't get rid of the pain, but I hope that it will replace the bitterness in my heart with grace.

God is aware of my pain. He is aware of my anger, my hurt, my marriage, my children, my family. He is constantly, caringly, overwhelmingly aware. He holds every tear I've cried in the palm of His hand, and in the other hand, He's holding my son. Yes, God is aware.

So there it is. I need to remember one year from now and every year after that, that there is a purpose and a plan. There are miracles being worked every single day. There is still a lot of work to be done, in myself, in my faith, in the way I honor the legacy Holden left behind. But I know now it's necessary work. Work that will take us somewhere intentional, no matter the outcome. That's my goal... to live intentionally, with a purpose. To always strive to be better, and do better, because we owe that much to Holden's memory.

Our first act of living intentionally and paying our blessings forward will require your help. Many kind people give generously to the hospital and the children being treated. In fact, some of the friends we made while living there are collecting baby items to gift to the heart babies on their daughter's first birthday. We don't feel like there is a void in gifts and care items for the children, but we do feel like more can be done for the families who have to stay for prolonged periods of time. We would like to start making care packages/baskets to donate to the parents and families in the heart center. I know that many of my friends and family are amazingly talented and creative, and I'd love to hear your ideas. Our goal is to do the first drop-off at Christmas, and another on Holden's birthday. The items we have thought of so far are as follows:

1. Starbucks gift cards- I know it seems like a frivolous thing, but there were days when a double shot latte was all that kept me going. God bless whoever thought of putting a Starbucks in the hospital.
2. Bibles and/or inspirational books- When the doctors don't always have answers, faith is the only thing left to cling to. I don't know how anybody can get through this kind of experience without it.
3. Chapstick/ lip balm- Because dry hospital air is rough.
4. Decent soaps and lotion- Because dry hospital air is rough, and the hospital soap makes hands crack and bleed over time.
5. Soft, fuzzy blankets- I loved mine, and Trent and I fought over the one we had daily. Hospital blankets are about as comforting as the soap.
6. Puzzle books- I'm partial to Sodoku, but to each his own.
7. Gift cards- We can either use these to buy specific items for the families, or give them as gifts

Seasonal for Christmas (It may seem silly, but for many of these families, it is baby's first Christmas. It was really important to me to decorate and celebrate, even in the CICU. Please keep in mind that space is limited, so all items need to be small.):
1. Small battery powered trees- We ended up being the only family on the floor who had a lit tree at one point, because hospital policy says no plug-ins, and ours was battery powered.
2. General Christmas decorations- Again, please keep space limitations in mind.
3. Special ornaments- Holden has a heart ornament that Trent's mom got for him, and I love it even more now.
4. Again, gift cards that we can use to buy specific items or give to the families

Gifts and donations can be mailed to:
448 Rains County Rd. 1275
Emory, TX 75440

It's past time to take the focus off our grief, and instead focus on paying forward the many kindnesses shown to us during Holden's hospital stay and beyond. We would be honored if you would join us in this effort.

Up and Down

I decided to start this post off with the good news, since that seems to be in short supply these days. When I went to the doctor last week, the sonogram showed that I am probably closer to 16 weeks along. That's a lot further along than we had anticipated, but at least everything looks good- so far. (He also told us that he's pretty sure it's a girl this time. He's not 100% certain, but he's pretty sure. We'll see if he's right when we have the next sono.)

He started me on progesterone injections to help stop the early contractions I'm prone to, and we have an appointment next week with a specialist in Dallas for genetic counseling, a more in-depth sonogram and a fetal echo. Because of what Holden has been through, we are considered higher risk, and I don't know if I'll be able to sleep at night until we know that everything is okay. At last week's sonogram, the doctor said everything looked okay with the heart- as far as he could tell- but we'll need a closer look to be sure. I'm hoping and praying with all that I'm worth that this baby will be healthy. I want this child to have a chance... The chance Holden never had.

I still haven't shared much about the day we lost Holden. I may never be able to share the details. But I can tell you that I still hold on to so much from those hours that I have to daily lay it down in prayer, or I'd be crushed. I am forever thankful that I was able to hold my sweet boy as he let go of this world and all of the pain it held for him. I am forever thankful for the many doctors and nurses who frantically, tirelessly worked to save his life. We saw the true hearts of the people who work at Children's Medical Center that day, and we love them for that.

But that thankfulness doesn't take the pain away. I haven't found the answer for that one yet. I didn't turn to medication (as would have been so easy to do and, at one point, was heavily suggested by many people around me). I don’t want anything to numb me. The reality of it is that my son died, and I want to feel the void that he leaves in my heart. Not cover it up or medicate it, even for a little while. I want to remember every single thing about my little man. I want to remember what I miss so much.

I miss his open mouth kisses- when we were lucky enough to be on the receiving end. The way he held his mouth open like a little bird because he was too lazy to feed himself. Hearing him say "night night" with his cute little wave every time we headed towards the bedroom. Waking up to his smile inches away from my face- He woke up every single day with a smile, no matter how bad he felt or how horrible his day would be. The way he had to touch both Trent and me at all times throughout the night- one of us wasn't good enough, he wanted both. Walking behind his stroller for hours on end, guided by his grunts and squeals to let us know what direction he wanted to turn that day. His excitement about reading his books, and his love of turning the pages for me. I could keep going... There are countless things to list.

So this is my reality. It sucks, but it's mine. I think that’s why this point in time is the hardest so far…the shock has long since worn off and the harsh reality of what my life will be like for as long as I walk this earth is setting in.

What gives me hope to put one foot in front of the other is that I know my life doesn't end here. This isn't it. We have been given Eternity, where I'll be able to hold my sweet little man once again. That is what brings me hope even as I am crying. I sincerely wish everyone who mourns his loss finds that same hope. Hope is rewarded. Prayers are answered. Maybe not in the way that we ask for, but they are answered.

We prayed for a miracle and we got it. We prayed that he be healed and he was…perfectly. We're honoring His plan for Holden's life, and He will be faithful. Even when I can’t see the plan through tears and my entire body hurts with grief, He is faithful.

My devotion the other day was titled “Do you trust God’s Will for your life?” I thought about that a lot. More than I should have. If I'm going to be completely honest, I would have to say that sometimes I'm just not so sure I do. That's hard for me to admit. Nobody wants to be that “ye of little faith” person. But I'm sure that someone reading this completely understands. Some days it's just harder to find that trust.

Trust or not, our lives don't stop. We keep going, putting one foot in front of the other. Even when it hurts. And it often hurts.

We do it because it's God’s Will. And I'm learning to trust Him.

Bittersweet

I wish I could say that things around here have gotten easier, but that's not really true. Will it ever get easier? I'm not sure that this kind of hurt ever dulls or disappears. We're trying to adjust to a new version of normal, but it's a big adjustment. So much of our lives revolved around Holden, and without him holding it all together, nothing is normal anymore. We have to completely change our way of living, and that's a very slow process. Many days, I don't even want to get out of bed, so I don't. Other days, I can manage to distract myself and make it through the day with a minimum of tears and mini-breakdowns. We have many friends and family who have made distraction an easy task at times, and we are thankful for that.

We don't have the autopsy results back yet. They said it would take 4-6 weeks, and it's been a little over four. I'm not sure if knowing why will help anything, but I can't move on without knowing either. Those results are one of the last things hanging over our heads, so I'm praying we have some answers soon.

I'm still not sure I understand any of this. We prayed so many times for God to make Holden's heart whole. Well, his heart is whole now. He answered our prayers, just not in the way we had hoped for. I struggle daily trying to live with and without him. With him, because he is still very much alive here in our hearts and our home, and without him because memories are all I have left to hold now. Balancing those two realities is impossible.

Each day we had him with us was a gift, and though I wish we had more time, I have to trust that God's plan for Holden's life was fulfilled in 17 months. That kind of trust is really, really hard right now, but we know that He has a plan for our lives.

That became evident when I went to the doctor last week. Much to our surprise, we found out that I am pregnant... At least a couple of months along. (We'll have a better idea of a timeline once I have a sono to date the pregnancy.) That means that all of this happened before Holden even went into the hospital the last time, and we had no idea. Trent and I had talked about having another child, and we decided to wait for a little while because we just weren't ready yet. The best laid plans, right? Indeed, the plans we make for our lives are not our plans to make. It's like He knew that we would need a reason to face each day again. Something to plan for. Something to look forward to, even as we try to sort through our grief. This is very much a bittersweet time for us. We are thankful and so very blessed, yet it's hard to be fully excited about anything right now. We are praying, and trying to keep a strong hold on our faith. It's really the only thing that's a constant these days.

John 16:33 "I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world."

My mother uploaded the slideshow shown at Holden's service, for those of you who are interested in watching it. We had some technical difficulties at the service, so I'm glad that we can share the full show with you now. I don't know how to include the actual video in the blog, but you can follow the link here.

We thank you all for your continued support and prayers. I'm not as diligent about responding to every one's messages as I should be, but your encouragement is the only thing that has kept me going at times. We appreciate all of you, more than you know.

Tributes

I'm still having trouble finding my words... I don't know that I have anything left in me to say at this point. My cousin (and Holden's godmother), Jennifer, wrote a beautiful letter about our little man. She gave me permission to share it with all of you here.

Ren Morrison, our sweet-hearted and generous friend who did Holden's one-year pictures and all of the pictures for his service, has also written a very touching blog. She has an exceptionally giving spirit, and she has been such a blessing to us. She included pictures of the service along with her sweet words, and you can find it all here.

We have been humbled and honored by the prayers and support from so many of you. We are so thankful. And until I find my own words, I am also thankful for our loved ones who are there to hold us up. We love you.

From Jennifer:

I'm stunned that it's been a week. It feels like 10 seconds and 10 years all at once. In some ways, it took Holden a long time to go home. In others, especially for those of us who have been with him so constantly during his 17 months among us, it seemed to happen so devastatingly fast. I'm afraid we'll be reeling for some time.

Everyone who will read this has experienced loss. Ours is no more severe or immediate than the pain of those who endure other hardships - parents gone too soon, sons or daughters deployed overseas, children who might have been. From experience, you know something of what we're going through. Jack and I had been so focused on the immediate moment, on fighting day to day, on supporting Lindsey and Trent whenever, however, and wherever they needed it, that we didn't get around to grieving for ourselves until Tuesday evening. It was then - and will be for a long while - that we grieve for the future Holden, for the child we would've helped guide through life, celebrated through birthdays and milestones and victories. The child who would say our names, spend sleepovers with us, know that his Uncle Jack was a total pushover, and his Aunt Jen would always be ready with a hug, a giggle and a snack. When we agreed to be Holden's godparents, we signed on to be constant, consistent presences in his life. And now we've signed on to honor his legacy.

One of the things that gets lost in Holden's struggles is the potential he always had for a future. Though his challenges seemed insurmountable, Holden so consistently defied medical prognosis and convention that we'd already started looking forward to his first day of school, his first caught fish. Holden knew pain that few of us will ever endure, but he also knew joy. He was a great source of joy. He loved being outside and riding on the tractor with his daddy. He loved his stuffed elephant (which was bigger than he was!), and snuggled with his soft little stuffed dog (only when he didn't think anyone was looking). He smiled with his eyes before his mouth. He was precocious, and loved teasing people with his "bull face": scrunched up nose, pursed lips, a cross between a laugh and a raspberry. He was an observer, and an excellent judge of people. And he was a charmer who hooked you almost immediately with those deep, soulful eyes. He loved things that made noise. To be read to. Music. He loved chasing bugs. He adored his sisters, and they always made their bubba smile. He put a lot of miles on his stroller, just being a boy outside in the dirt - as it should be.

We absolutely take comfort that Holden is now pain-free, that he's struggle-free. But his pain and his struggle didn't define his life. They weren't the sum total of it. When Holden's story is told, we pray that it is not a story of what Holden didn't have or of the opportunities he missed. We pray that it's the story of what he DID have, of the amazing gifts that God gave this sweet boy. Holden was born not with just a broken heart, but with a very special heart. He brought out the very best in those around him. He gave us strength, pushed us to do better and be more. He touched more lives in 17 months than many of us will touch in a lifetime. And he will continue to urge us to do more, to be better, to make a difference - so that we may live up to his legacy.

So thank you for being there for us, for sharing in this with us. Thank you for continuing to tell Holden's story. Thank you for continuing to lift up his hero parents, Lindsey and Trent, in prayer. They've never needed support quite as they do right now. Jack and I will always be Holden's godparents, and we will always stand with Lindsey and Trent. Thank you for supporting us as we support them. We couldn't do it without you.

Struggling for Peace

This blog used to be cathartic for me. It started out as a way to chronicle our day-to-day lives, and as a way to keep Holden's supporters informed. It turned out that the blog was as much for me as them, and I hope that I can find some kind of peace through writing again.

I was so touched to see how many people came to honor Holden. I saw many faces that I hadn't seen in years, many faces that I had never seen at all, and many faces that I have seen often through our journey with Holden. People came from all over the state to honor our little man, and seeing the impact he had on so many lives was humbling. How many of us will go our whole lives without making that same kind of impact? He was one-of-a-kind, and irreplacable. Thank you, everyone, for knowing and honoring that yesterday.

People ask how I'm doing, and I don't know how to answer that question. Should I tell them, "Fine, thank you," and move on? If I'm going to be totally honest, I'm far from fine. We are all far from fine. I'm numb, and I'm lost, and I still don't know if it's hit me yet that he's never coming home. In fact, I'm positive that the full realization hasn't made it through my head yet.

I just never expected him to not make it through. Yes, I knew what kind of obstacles he faced. I knew how hard the journey was going to be, and I was fully prepared to walk it with him. I knew that his world was full of uncertainties, but I never prepared myself for one of those unknowns to beat him. I had actually gotten a little bit arrogant, thinking of how much he'd been through already. I was terrified for him, but it never even occured to me that this time would be different. He fought so hard in so many battles, and I just knew that he was going to fight and win again. How long will it be before I fully realize that he lost this time? I hope never... I don't know if my heart can take it.

Holden had a gift for stealing hearts. All babies are cute and loveable, but even in his worst moods, Holden could charm the pants off anyone. I wonder if deep inside somewhere, he knew he didn't have much time in this world. I wonder if he loved so much and so hard because he knew he had to fit it all in. Or maybe he really was just an exceptional spirit, sent here for the purpose of teaching us all to love, to live, to appreciate, to be more- because he was.

I can look back over the last 17 months and see so many things that God gifted to us as sacred memories. Holden's life has touched and inspired so many others, and that in itself is a gift. But I miss him. I want more than memories. I don't know why this path was chosen for us, but for reasons I'm not sure of, He chose to give us a different story to tell. I don't want to be a part of this story.

Does it ever go away? The hole in our hearts, our home, our spirits. Does it ever get better? It doesn't feel like it right now. He's everywhere here. I'm trying so hard to hold on to my faith, but honestly, it's so very hard. I want to understand the plan in all of this. I want to let go of my anger and trust that His plan is bigger than my own. But I'm human. I'm selfish. And I want my baby here, with me. I don't understand. I can't understand, and I'm really struggling with that. I try to remember that God suffered the death of His own son, and knows the pain that I feel. Somehow that doesn't make it any easier right now.

I'm not strong... I never have been. Any strength I had was pulled from my brave little man who had enough courage and heart for all of us. I feel so brittle and fragile right now, like I might shatter and break at any moment.

The only things holding me up right now are my husband, my girls, and our ever-present family and friends. We are blessed to live among such supportive, genuinely kind people whose faith, love and supportive spirits are giving us a strength that is hard to explain. I am on-my-knees grateful for all of you, every day. We wouldn't have made it without you.

Remembering Holden

I still haven't found words to describe what happened yesterday. I don't know if I ever will. The only comfort I have is in knowing that he's no longer in pain, and he has finally found complete healing in the arms of our Father. My little man endured more in his short life than many of us ever will, and the strength of his will still takes my breath away. He was always so much stronger than me.

He was brave, and he was tough. He was a miracle from the moment he took his first breath. He faced each day with a smile, no matter what the day had in store for him. He knew life was a gift, and that's something many of us forget.

By living each day with a broken heart, he taught the rest of us how to live with our whole hearts. I am so very proud of him, and I am eternally grateful and honored that I was allowed to be his Mommy.

Please join us in honoring his memory on Tuesday, July 12th, 3:30pm at Lake Fork Baptist Church in Alba, TX. Everyone is welcome.

If friends and family would like to make a memorial contribution, we ask that you go to http://www.organ.org/ or http://donatelife.net/ to do so in lieu of flowers. Holden was on the waiting list for a heart transplant for more than seven months. If he had gotten his gift of life sooner, he might still be with us. Raising awareness for organ donation would be a fitting tribute to honor his life. (For those of you who are uncomfortable with exchanging money online, contributions can be sent to Trent and Lindsey Sisk at 448 Rains County Rd. 1275, Emory, TX 75440. We can then make the donation in Holden's name.)

We are immeasurably thankful for all of your encouragement, support and prayers. I never fully realized how many lives Holden has touched and inspired, and it's a comfort to see it now. Thank you.

When Words Are Just Not Enough ...

We all know Lindsey has a beautiful gift with words; she is understandably having difficulty expressing them at this time.  They are thankful for all of their wonderful family and friends who have risen up and showered their family with support.  They would say thank you for all the prayers and messages.  Your support has meant more to them than some will ever know. 



Holden was a fighter.  So are Lindsey and Trent.  Their job has been to care for Holden, night and day, while loving his every breath.  Now their job will be to figure out how to move on, to find peace with Holden's passing over. To know he's in a much better place, happy, free of pain, free of feeling sick all the time. He's whole and with God. In the meantime, Lindsey and Trent are still here on this earth without  Holden. It's going to be a difficult walk, more difficult than anyone ever imagined.  They will need our prayer's for a while longer to help hold them up under their precious loss.  Please keep the prayer's going for Lindsey and Trent.  Holden will always be forever young.  May he rest in peace and remain a part of all those he has touched.  His memory will be forever treasured.

Surgery

Holden went into surgery about 45 minutes ago. They'll attempt to place catheters for dialysis (which he desperately needs), and also check his upper and lower bowels to make sure he doesn't have dead tissue causing the sepsis in his body. The nurse just updated me, and he's still stable so far. They are attempting to place one of the catheters now.

We are so grateful for the many, many prayers lifting our little man, and we ask that you continue them. He's in a bad place right now, but he is strong. He is a fighter, and always has been. We know that miracles have been worked through him in the past... We can only pray for one more.

Update

Holden made it through the night, but his latest numbers don't look as good as expected. We're trying one last drug, and praying it makes a difference. Thank you, everyone, for your prayers. We feel them.

Prayers Needed

I don't have the energy to go into a lot of detail, but today has been the worst day for all of us. We didn't even get around to the surgery, as Holden crashed shortly before and had to be intubated. The doctors worked for hours intubating him and getting more lines in (for meds and pressure readings), and then it got worse. We came so close to losing him. Holden's heart stopped six times, but compressions were able to bring him back. They had a lot of trouble stabilizing his heart and blood pressure, and he's still not anywhere near out of the woods. He's holding his own at the moment, but they're having to increase his epinephrine drip in order to keep him "stable". The doctors weren't terribly optimistic about his ability to make it through this episode and the night, but we know that there's always a chance. If he can hold his own through the night, we'll try again for the surgery tomorrow, and hope for better results. The bottom line is very, very bad. We are in a horrible place right now, and all we can do is pray. Please say a prayer for my little man tonight... He needs them now more than ever. 

Brief Update

Holden went down for an echo and abdominal sonogram earlier this afternoon (neither one told us anything new), and when we came back, his blood pressures and temperature dropped really low. Given the severity of the rest of his problems, they wanted him to be in the ICU- just to be safe.

He has so many different things going on right now, nobody knows where to start. We're really concerned with both his liver and kidney numbers right now, and if he doesn't start peeing soon, the renal team is going to want to take more action. We're praying he starts peeing before then!

We originally thought that all of these problems might be stemming from dehydration from his c-diff infection, but that doesn't explain the elevated liver enzymes or the acute pain episodes. We know something more is going on with him, we just haven't figured out what it is yet.

Thankfully, Holden's napping in a morphine-induced stupor at the moment, so he's feeling no pain. Maybe we'll have it all figured out before he wakes up!

Here We Go Again

I don't even know where to start this time. We're back at Children's, and Holden has all kinds of crazy things going on. He hasn't really been acting right since we brought him home on Friday, and it got progressively worse through the weekend. Yesterday afternoon, he started crying and then screaming, and he didn't stop for six hours. He was clearly in a lot of pain, so we decided to bring him in to the ER. By the time we got here, he was hysterical and dripping sweat, and the pain was causing breathing issues. They got him in quickly, started an IV (not so quickly), and gave him some morphine for the pain. Thank God for the gift of morphine! He immediately calmed down and went to sleep, and the rest of the admission process went pretty well. We're on the 8th floor again, probably for a while. (And we ended up in the same room that we lived in for three months here... I don't know if I like that coincidence or not.)

They've run the full spectrum of labs on him, and the numbers are a mess. His BNP is almost 28,000 now, and we're still not sure why. He'll have another echo this afternoon to make sure his heart function hasn't deteriorated. His BUN and creatinine (kidney numbers) are both elevated- 71 and 1.0- and they've actually gotten worse since we started him on IV fluids last night. We've already talked to the renal doctors, and he'll have an abdominal ultrasound this afternoon as well. I don't know if that will show us anything, but it's worth a shot. His AST and ALT (liver enzymes) are also elevated, and we don't know why. The good news is that his electrolytes have remained fairly stable, and his amylase and lipase (pancreatic numbers) are normal. The doctors were concerned that we might be dealing with pancreatitis again, given his level of pain yesterday, but that's been ruled out. He still has the c-diff infection, and it doesn't seem to be responding to the antibiotic he's on. We'll talk to that team later today, and hopefully come up with a new plan.

So we're here again, with more questions than answers, and it's still as maddening as it's always been. We have a lot of doctors on a lot of teams working on different parts of the puzzle. I hope and pray they can find out what's going on and provide my little man with some comfort. As always, we are so grateful for your continued support and prayers.

Home... For Now

We're home, but I don't know if we'll be staying... When we got home yesterday evening, Holden passed out for a few hours and then woke up screaming and crying miserably. I finally got him to sleep for the night after a very traumatic bath, and he slept until 10am this morning. We thought it was just exhaustion from the hospital stay, but now I'm not so sure.

We took him to the hospital lab this morning to check his electrolytes, BUN and creatinine. All of those numbers actually looked pretty good, but now we have new issues. After giving him fluids while in the hospital, he puffed up a little bit and stopped peeing. (This seems to be a common theme with him whenever he gets IV fluids.) He was dehydrated when we started the fluids on Tuesday, he wasn't getting full feeds while admitted, and he still has diarrhea from the c-diff infection, so we thought he just didn't have anything to pee out.

Last night, we started him on a sodium supplement to bring his numbers back up (which worked beautifully, according to his labs), but the salt in it has only caused him to retain more water. He's been so tired and out-of-sorts today, and he's been acting so miserable. When his respiratory rate went up and his work of breathing got too heavy, we had to put him back on oxygen. He hasn't had to be on oxygen support since we left the hospital for the first time back in March, so this isn't a popular choice.

Until we can get some of this fluid out of him, he's going to have trouble. I feel like we've been in this exact same position before, because we have. We prayed and did the pee dance many times during his stay in the hospital.

His stomach is starting to look a little bit distended again, which we know can be the beginning of bad things for Holden. We gave him an extra dose of diuretics this afternoon, and we haven't seen anything from it yet. We're going to try another double dose this evening, along with some sodium-free formula, and hopefully that will help turn things around for him. If not, we'll be heading back up to Children's in the morning. And of course, if he gets any worse tonight, that will mean an ER visit.

So if you get the chance this evening, please say a prayer for our little man. Specifically, please pray for pee, once again.

Short Update

I don't have any big news to report, and we're just kind of hanging out waiting for a definite plan at the moment. His BUN has improved, but his BNP is back up to 26,500 and his sodium levels are still really low. However, his sodium has always run low, and there isn't much we can do to help lower the BNP (especially since we still don't know why it's jumped so high to begin with). I'm not really sure what they're doing here in the hospital that we can't do at home, so we're trying to push the doctors to come up with a better plan for us. We want to go home today, and the doctors want us to stay until at least tomorrow. We're praying and doing our best to change their minds. I'll update more again when we have some news, and hopefully I'll have a chance to write a more detailed post next time. Thank you again for all of the prayers and encouragement... We are grateful for all of you!

(Updated to add: Against the doctor's better judgement, we talked her into letting us go home today. We'll have to follow up with labs over the weekend and come back in if anything changes, but we're going home!)

Back Again

This is going to be a very short post, because I'm exhausted and my little man is crying for me to lay down with him. We came in yesterday for Holden's appointment with the transplant team, and they decided to keep him for a few days. None of his issues are huge deals, and he's not facing anything he can't handle, but it still just sucks to be back here. He has a few different things going on, and hopefully they can all be dealt with quickly so we can get our boy back home!

His kidney numbers (BUN) were really high, probably due to dehydration. They wanted to see what would happen with the number if we started him on IV fluids, and thankfully it's working so far. (Slowly, but the number is coming down.)

Some of his electrolytes were low as well, so they wanted to keep an eye on those numbers. It's not usually a big deal for a normal person to have low potassium, but for a heart baby it can be a bigger deal. If we can get those numbers stabilized, that will be one less thing to worry about.

When they measured his BNP (the number used to measure the severity of his heart failure), it came back showing a whopping 24,000. That's up from 5,000 last month, so it's a pretty big jump. It's down to 17,000 today, but that's still really high. I think it's confused everyone, since the echo didn't show any major changes in function. With a jump that high, we would expect to see the effects on the echo, but Holden's never played by the rules.

And since he needed one more thing on his plate today, his cultures came back positive for c-diff. It's a bacterial infection in the gut, and people who are on frequent antibiotics are more susceptible to catching it. It's treatable, but it's just another speedbump.

I've known something has been off with Holden for a while now, since he hasn't been acting like himself for at least a couple of weeks. His behaivor has probably been a combination of all of the above factors. I hate that he's back as a guest of CMC, but I'm glad we're getting to the bottom of everything so that he can finally begin to feel better. We'll be here until his labs come back looking a little more normal, and hopefully that will be sooner rather than later! Holden always manages to surprise us, so maybe it will be a pleasant surprise this time around.

I'll update more tomorrow after we've all gotten some sleep, but I've outlined the basics for those who were wondering. Thank you all so much for your kind words... I can't tell you how much they mean to us. Please don't forget to add Keegan and his family to your prayers as well... They are still struggling, and I know they can use the lift! We truly appreciate each one of you who continue to follow Holden's story, and we are so very grateful for your support and prayers.

Dog Days of Summer

Once again, I'll have to start off with my heartfelt apologies for not updating this blog more regularly. I know that many of you check in daily, and I'm sorry that I haven't kept up for you. In my defense, we have been crazy busy around here. The girls have been here with us since school let out, and we have a house full of people. I've been trying to run the madhouse with some illusion of order, but that's no easy task. I also have a ton of pictures to upload, and I promise I will try and get to them soon. I know my definition of soon can be sketchy, but I will do my best!

All in all, things have been going well. Holden is still up and down, and he still has bad days that break my heart. But he's turning into a happy little boy, and I love that for him. He had a cardiology checkup at the end of May, and we'll go back this month for a more in-depth workup. We don't have much to report from the appointments. His BNP is still going up, but that's to be expected. Our biggest concern at the moment is his weight. Instead of gaining, or at least maintaining, he's losing weight. He's also gotten a little bit taller, so he looks like skin and bones. Unfortunately, there isn't much we can do about that. His vomiting is pretty cyclical, so it will get better for a little while and then get worse again. Right now, he's throwing up at least a few times each night, but we're hoping and praying that gets better again very soon. He needs to keep down every calorie he can.

We've managed to do a few fun summer things, in between all of the nursing and caretaking. I hate that we can't go and do more, but we still have to limit Holden's exposure to crowds. I'm just happy to have all three of my kids here this summer, and watching them bond again is enough to bring joy to my heart. Lord knows we all needed this kind of time together!

We are so thankful for your continued thoughts and prayers. They mean the world to us, and we truly appreciate all of you. If you happen to be saying a prayer for Holden, please include a few words for another little boy named Keegan. He had his heart transplant when he was a newborn, and he's three and a half now. The past six months, he has been in and out of the hospital with various complications. His family has been through so much, and I know they could use your prayers and support as well.

These past couple of months have almost felt stolen. I don't know how to explain it, but I know that we're not going to be able to stay this way, and I know we still have some major hurdles to jump. It makes me feel like we should squeeze everything in while we can. When I think about other kids like Keegan, it makes me even more determined to enjoy every single second of these stolen days of summer.

We are still waiting for the other shoe to drop. Still waiting for the call, still stuck in a holding pattern. But today, I am grateful. To be at home. To be celebrating the long hot days with family surrounding us. To be given the chance to watch my kids rediscover each other. I am grateful for the chance to let Holden try and grab his own little piece of normal. After all, doesn't he deserve to be a normal little boy for even a short time? I think so. I think every child deserves that much.

Little White Lines

Yes, we're still here, alive and well. I'm still not as dedicated to updating the blog as I would like to be, but any intentions of changing that are quickly thrown out the window when I realize how few hours there are in each day. Holden continues to thrive here at home, smiling with a little more joy each day. It's not all ups, but the downs are fewer and farther apart, and for that I am thankful.

I was laying in bed with Holden this morning, and he was tracing his biggest scar with his finger, the same way I often do. Since then, I've been thinking a lot about his scars, and what they mean to me. He has quite a few of them, more than we were prepared for. But I guess those scars can serve to remind him throughout his life about the things that truly matter.

I hope he's never ashamed of those lines. I hope he doesn't become self-conscious and try to hide them as he gets older. His body looks like a battlefield, but he won the battle. I want him to be proud of that. I want him to be proud of those pink and white lines, and of what they mean.

Someday soon we'll get the call for his heart transplant, and one of those lines will have to be redrawn. I've grown pretty fond of his little body as it is, including all of his scars, but I'll grow to love the new scar just the same. A new scar means another victory. A new fight, a new line... His own special badge of courage.

A scar is defined as a lingering sign of damage or injury. I don't know that my definition is the same. To me, his little white lines are a lingering proof of answered prayers. Proof that God kept His hand on my baby, then and now.

Holden will never know how many tears we've cried as we traced those same lines. How covered he was in prayer as they changed from angry red slashes to shiny white lines. He may never understand the full magnitude of what those scars symbolize, but I hope he I hope he sees the beauty in them. I hope he realizes they don't make him a victim, they make him a survivor.

Scars don't form on those who lose the fight. They only form on the living... The survivors. More than anything, that's what Holden's scars mean to me... He is a survivor.

Happy Mother's Day!

On this particular Mother's Day, I am thankful for my blessings in a way that I couldn't have been in past years. These last six months have been the hardest months of my life, full of unbelievable highs and unimaginable lows. Getting through those months has given me a hard-earned perspective on what is most important. I wish somehow that I could go back in time with this new perspective, so it could benefit my girls as well. Unfortunately, that's one of the hardest lessons in life... The only possible direction is forward, for better or for worse.

Regardless, this year I am counting my blessings, and there are so, so many to count. Kaitlyn, the baby girl who made me a mother, is sitting on the line between little girl and woman. She is sensitive and kind and oh-so-smart, all in a beautiful package. She makes a parent proud, proud, proud. Rylie is a little charmer who lives up to her nickname of Smiley Rylie, with her impish grin and sparkling eyes. She is a live wire and a free spirit, and she's going to set the world on fire one day. Then there's Holden, my miracle baby, who reminds me daily that every second of life is a gift. He is strong and courageous and such a fighter. He smiles, loves, laughs and fights on- doing it all with more heart than any of us.

These are the blessings I'm counting this year, and I am on-my-knees thankful for all three of them. Happy Mother's Day!

Winter in May?

The unseasonably cold weather (really, temps in the 40's, in the first days of May??) has kept our stroller loving little man confined to the house today, and he hasn't been happy about it. We spend the majority of every day outside, and he doesn't understand why this day is any different. If I hadn't been such an overachiever a month ago, we might still have some of our winter clothes out and available to wear, but they are all packed away and stowed half an hour away. Sigh... Once he wakes up from his nap, I'm going to have to get creative to keep him entertained.

Aside from the torture of being cooped up all day today, we've had a pretty tame and uneventful week. I LOVE tame and uneventful weeks! We haven't had enough of those in the past months. Holden seems to be pretty well adjusted now, although changes and visitors still throw him into a tailspin. His favorite game is still peek-a-boo, and he is still absurdly adorable when he's playing.

He's made progress in his therapies this week as well. He had completely forgotten how to use his legs by the time we got home, but now he's starting to bear some weight on them again. He's even pulling up on his own when he wants something badly enough (with a little help balancing, of course). His tolerance for tummy time still remains near zero, so I guess we'll be skipping the crawling portion and moving straight to walking. He does have a feeding tube, pacemaker, and multiple scars all in his abdomen... If I had all of that stuff in my stomach, I think I'd be hesitant to spend too much time laying on it too.

The biggest improvement has been in the eating arena. Since his last surgery in early March, we haven't been able to get him to eat more than a bite of anything. He didn't even want to drink out of his cups, when before he was drinking whatever we'd give him. Last week, we left him unhooked from his feeding pump while we took him to see his pediatrician, and by the time we got home he had gotten hungry. For the first time in a long time, he was really interested in eating! I'm not sure if all the work we've done with him has finally helped, or if his little belly just felt empty, but I'm thankful! Since then, we've been able to feed him quite a few different things, although he's still not taking in enough calories to wean him off of his feeding pump entirely. He won't eat more than a bite or two of any kind of baby food, but he's loving crackers, cookies, veggie sticks, ice cream and cheese. (Yes, the child who eats next to nothing will eat all of the shredded cheese I can stuff into his mouth. He must get that from his Dad.) He's also addicted to the Pringles Stix, Honey Butter flavor, thanks to his speech therapist who keeps introducing new foods. We're trying out a new routine of only feeding him through his tube at night and supplementing that with table foods during the day. I'm hoping and praying that doing this won't cause a drop in his weight, since he can't afford to lose any more. I think it might be a wash though, since he only throws up once or twice a day now, compared to ten to twelve times a day on continuous feeds. Surely he's getting at least the same amount of calories in him?

The final improvement of the week has been Holden sleeping almost through the night! He hasn't slept through the night once since he was born, aside from when he was knocked out in the ICU. (And that doesn't count.) He's never been the best of sleepers, but the past weeks have been horribly hard on both Holden and his mom. He would wake up crying and remain inconsolable for the rest of the night and into the early morning hours. He didn't want to go back to sleep, he didn't want to play, he didn't want to rock... He didn't want anything. At our last visit, his pediatrician recommended we try Melatonin. I had never heard of giving Melatonin to a baby before, but I have to say now that it is my favorite drug EVER. His doctor said that since it's natural, it won't interfere with all of the other meds he's on, and other babies have used it with no issues. I had a few twinges of guilt over giving my little boy another drug when he's already on so many, and also basically drugging him to get him to sleep. But after the first Melatonin-induced night of sleep, those twinges of guilt are gone. Why haven't we included this in his arsenal of drugs from the very beginning?? He's been on every other drug on the planet, but Melatonin is my hands-down favorite. Can you tell I'm a little enthusiastic here? It must be the extra energy from all of the sleep I'm finally getting! :)

The little man is waking up from his nap now, so I'll have to go rack my brain for some new indoor activities. I do try and update as often as I can, but I know I fall short of expectations many weeks. Please know that whether I say it once a week or once a month, we are immeasurably grateful for your continued support and prayers. Holden still has a long road ahead of him, and it is such a comfort to know that he's not walking it alone. Thank you for that.

I'm Still Here

Well, if no news is good news, you're safe in assuming we've been living a lot of good news around here lately. Our days are still busy, and I still feel like I'm losing my mind most of the time, but we're settling in more each day. Most of our time is spent playing follow the leader, and I'll let you guess which pint-sized dictator is the leader in our house.

We've had quite a few appointments with various doctors and therapists in the past couple of weeks. His physical and speech therapists come twice a week, and his occupational therapist comes once a week. With all of our appointments in Dallas, we've had to cancel and reschedule a few of those appointments, but I think it's safe to say we're making progress. We may be moving at a turtle's pace, but it's progress nonetheless.

We're still having issues with his ear infections, even though he's on round-the-clock antihistamines for his allergies. I don't know what we're going to be able to do about that, but we have an appointment with an allergist at the end of June. Apparently, those are popular doctors, as that was the earliest appointment we were able to get.

He's also stopped sleeping, pretty much completely. I don't know if that's due to his ears, or teething, or some other issue we haven't figured out yet. If he was waking up happy and wanting to play, that would be one thing, but instead he's waking up scared and crying. He continues to cry and toss restlessly for the rest of the night, until we finally get him up before the sun comes up. He's not even fully awake when he's up in the middle of the night, so I don't know what's going on. We're going to try and talk to his ped sometime next week, who will hopefully have some suggestions. He's already on Benadryl and Valium, both of which should be helping him sleep. And if it's nightmares waking and keeping him up, I would think the Valium would help? Just one more mystery for the little man...

We met with his primary cardiologist on Friday, Dr. Pearse, and she didn't have much to add. Holden was pretty unhappy about being at yet another doctor's office, so we tried to get out of there as quickly as possible. We were supposed to go to Children's on Monday for an appointment with the transplant team, but the sewer system here collapsed and Trent had to spend the day fixing that instead. Thankfully, we were able to reschedule to Thursday, and the sewer system got its repairs.

We had an appointment at the Legacy branch of Children's bright and early Tuesday morning to see Dr. Russo, his GI doctor. We were only an hour late to that one, after getting lost and stuck in traffic. They still let us come in, and we had an eventful day there. Our appointment started out with depressing news, which we expected but didn't necessarily want to hear. Evidently, we've run all of the tests and tried all of the medications we can try to reduce his vomiting. The tests didn't show any physical abnormality, so it's not anything that can be "fixed". The dr. thinks the vomiting is caused by one of two things, or possibly both: cardiac output and sensory issues. When the heart isn't working as efficiently as it should, other parts of the body get prioritized. The lungs, kidneys and liver get attention first, and the gut is last on the list. That means that while his heart is working well enough to keep him alive, it's not working well enough to keep his whole body functioning as well as it should. If it's a cardiac output problem causing his symptoms, that won't be fixed until he gets a new heart. Even then, it may not be completely fixed because he may also have sensory or nervous system issues as well. The only fix for that is time. This was depressing news because as much as we knew that this was coming, I was still holding out hope that we'd be able to do something - anything- to help Holden. At this point, the only thing we can do is push the tube down into his intestines so that we can keep his feeds down to promote weight gain. This isn't what we wanted, but we may not have a choice.

After we finished talking to Dr. Russo, our surgeon's NP came in to replace Holden's gtube with a button. That went better than expected, and we were on our way home shortly after. We knew the button was going to take some getting used to, and we also knew that it could be pulled out more easily than the tube. That point was driven home later that evening, when the lines got wrapped around a door handle while Trent was bringing him inside, and the whole thing popped out. As blood and stomach contents squirted out of my little man, Trent and I made a few panicked phone calls (ending up on hold forever) before deciding to try putting the button back in ourselves. (It's important to get something back in as soon as possible, because the hole can close up in as little as two hours. Yikes!) We got it back in, then spent a paranoid half hour making sure that we had placed it correctly. Thankfully, we did, and I spent the rest of the night trying to remember to breathe again.

On Thursday, we went back to Children's for our rescheduled transplant team visit. They don't do anything major at these visits, but Holden does have to get labs drawn, and in the future he'll have echoes and other tests scheduled at the same time. His labs were pretty good overall, although his BUN and creatinine were a little elevated and his potassium was a little low. None of the numbers were off enough to cause major concern, so we were cleared to head back home. One thing I did find interesting was another lab number they follow called BNP. They'll use that number to track his heart failure, and Holden's was in the high 5000's. To put that in perspective, a normal number would be below 400. That number is yet another tangible reminder that no matter how perfect he looks on the outside, he is still far from normal.

Trent's family is coming to his grandmother's house (where we are) for Easter later this afternoon. While I'm looking forward to Holden's getting to share in a family holiday, I'm still a paranoid wreck about germs. We've done so well keeping him in his bubble, and I am so afraid he's going to come down with something. I bought some soap and hand sanitizer to keep by the door, and hopefully everyone will use it without me having to run around squirting people like a crazy lady. Fear and paranoia can do strange things to an otherwise fun-loving mama. I've already promised myself that I'm going to try my best to relax and be thankful for the first holiday Holden's getting to celebrate at home instead of in the hospital. Easter is a celebration in any case, and we have more than enough to be thankful for this weekend.

In between all of Holden's command appearances and therapy appointments, we try to keep things quiet, calm and happy at the house. He's lost so much time, and I want so badly to make it up for him, to give it back. I may not be able to do that, but I can do my best to keep him as happy as possible now. He may not have found his voice just yet, but I know what he loves, and that's more important, right? We spend the days outside, soaking up the sunshine. Holden would live out there if he could, and we tend to let him.

Every day is still a roller coaster, and in between the ups and downs we're trying to find the sweet spot. It's not all giggles and sunshine, but everyday miracles surround us. Holden serves as a potent reminder of that fact.

Livin' the Dream?

Again, I've been having a little bit of trouble finding my way to the keyboard to update the blog. Our lives are still a little crazy, but we're settling in and forging new routines. Our lives are crazy, but full, and we are blessed.

Holden has finally found his laugh again, and I think it's my favorite sound in the world. We don't get to hear it often enough, but the few times he's shared that cute little belly laugh have melted me into a puddle. He hasn't laughed or giggled since we took him to the hospital on Nov. 1st of last year, and I was so afraid he'd lost it. He's also mastered the art of peek-a-boo, and it is absurdly cute. Of course, everything he does these days is ridiculously cute.

We went to Dallas on Tuesday for his first appointment at Children's since we left. It was a long day (with only one of the three appointments we had scheduled actually happening), but I think things went pretty well overall. Not much has changed from a cardiac standpoint, although he has moved up on the transplant list to a 1B. He's lost a little bit of weight, and falling off the growth chart again earned him a bump.

We haven't been able to get his weight back up since his last surgery, even with continuous feeds going 24 hours a day. We're trying to increase the calories in his formula, but his system doesn't seem to know what to do with those extra calories, and it's coming back up even more forcefully than before. The night before last, I was treated to a conditioning rinse of regurgitated Elecare, covering my entire head. Oh, the things we'll tolerate for these little miracles.

He has an appointment with his GI doctor on the 19th, and hopefully we'll come up with a better plan of action to curb his throwing up then. So far, most of the doctors are out of ideas, and their solution is to move his gtube to his intestines and bypass the stomach entirely. I don't think that's much of a solution, since we'd be fixing a symptom and not the original problem. We would be going backwards against any progress he's already made. He'll also still throw up, it will just be stomach acid instead of food. I'm sure he would agree with me when I say I think that would feel even worse. Of course, we may never know what's going on with his digestive system, and I have to learn how to be okay with that as well.

Our next appointments are with his regular cardiologist, the transplant team and the previously mentioned GI doctor, all in the next week and a half. That's on top of his regularly scheduled therapy visits to the house, and visits to his ped for ear infections. He is one popular little boy!

We've gotten the evaluations out of the way for speech, occupational and physical therapies. The results weren't unexpected, but heartbreaking regardless. His PT evaluated him in three main areas- Stationary, mobility and object manipulation. He ranked in the 4th percentile overall. Ouch. We obviously have a long way to go, and many months to make up. He was in the 12 month range in object manipulation, which was his highest. That didn't surprise me, as he's been playing with small toys even in his hospital bed. He is in the 9 month range for the stationary portion, and only in the 4 month range for mobility. He doesn't crawl, walk, or even pull up anymore. It's like he's forgotten his legs, and forgotten what they're used for. He screams when we try to put any weight on them, but I'm not sure if he's terrified or hurting. Like I said, a long way to go.

We also have a lot of work to do in speech therapy. I know I can be premature and dramatic at times, but I am approaching panicked that he has no words. He's just now started babbling again, but he should at least be saying mama and daddy by now. Maybe he's just saving it up? He can be a tease... However, he seems slightly less than not at all interested in learning to speak right now. I wonder if his lack of language has been a tender mercy up to this point.

I still have moments (and days) when I am completely frustrated, overwhelmed and angry at nothing in particular. But then there he is. All 8 kilos of soft, adorable superhero. He melts me, utterly and completely. So I pick myself up and start the daily process all over again. I give him his meds, feed him what I can, play peek-a-boo, read to him and rock in the chair. It's good couples therapy, for sure.

I'm learning this journey is all about going with the flow. I'm not there yet, but I'm learning. I'll continue to worry, pray and think silly thoughts about random scenarios that will probably never happen, because that's what I do. Because there's nothing else I can do. Your mind tries to save your heart in strange ways when things aren't perfect in the world. But sometimes hearts can't be shielded. Some of the things we put our baby through break mine into a million pieces. On those rough days, it's a good thing Holden has enough heart to carry us all. :)

Wishing and Hoping

Life continues to be good to us at home. Our own special brand of good, but good. We may be operating a few degrees east of normal, but we are together in our own home, and it's a healing time for all of us.

We're still just getting through the days, one day at a time, but those days are getting better and better. Watching our boy return back to us, bit by bit, is a gift. I'm not ringing any victory bells just yet, but there's no ignoring the amazing grace that has covered our family these last months.

As much as I try to bury my head in the sand and pretend we are a normal family, reminders creep back in the oddest moments. Every time my phone shows an unavailable number on the caller ID, I have a small panic attack before I even answer it, thinking it's the transplant team calling to change our lives forever. Every time someone asks for more clarification on his transplant process, it serves as another reminder that we are not finished with the race just yet. (To clarify, I don't mind the questions at all, so don't feel bad if you are one of those who have been asking questions. I need a little reality in my fantasy bubble now and then.)

We start our rounds of appointments this week, and I'm dreading them. It's so much easier to pretend that he's going to be okay when he's here in the bubble. Taking him back to the hospital means taking him back to the reality that he's not, and will never be, a normal kid.

His own heart will take him as far as it can, and then - God willing- he'll have the gift of a new one. While it is a gift- the most precious gift- it will still not be enough to make him normal. The risks are real. The risks are huge. The risks are something we can't ignore. No... While he will be special and blessed beyond belief, he will never be normal.

It feels wrong and ungrateful to be so anxious in a place we've prayed to return to for so long. But the reality is there's nothing to anchor us to here. We're just waiting, drifting towards the next chapter in our lives, and it's so hard for me to just enjoy the now instead of trying to peek into the future. That's not my personality, and it's hard.

There is no avoiding the journey, or the work. But the good news is there's no avoiding the hope either. Hope is what offers direction and focus and energy. Hope helps us to see past the uncertainty, to better. Hope may not take away all of my fears, but it gives me a way to fight back against those fears.

Thank you Lord, for giving us hope.

Slow and Steady

Today started out much like every other day at home... I "woke up" (if you can actually call it waking up after not really going to sleep) mad at the world, sleep-deprived and overwhelmed. We still haven't really settled into a routine here, and we're trying to coordinate all of Holden's home medical needs and therapists with his many appointments and command appearances outside of our little bubble. I started the day in a pretty depressing mood. I snapped at my husband, threw things around with a little more force than necessary and sulked by myself outside for a little while. (In case you're wondering, it's spelled b-r-a-t.)

However, my day ended on a good note after reading through some messages and emails when I got online this evening. Our lives are filled with the most kind-hearted, loving, generous people on the planet. We don't deserve them, but I am thankful for them all the same. You will never know how much I needed that pick-me-up today, and I am beyond thankful for the many blessings in our lives. This life isn't all rainbows and roses, but blessings can be found all around us.

We are slowly adjusting to our new version of normal at home. We spend most of our days around here either pulling out medications, measuring them or pushing them. He takes more meds now than he's supposed to take after his transplant, and that is a LOT of meds. I was thinking about those meds this morning as I was trying to measure and cursing them. I thought about how much of our lives revolve around them. Truly, everything in our day revolves around medications. And yet, each one is a parent's hope, a baby's future. Each one of them helps my baby live to see another day. When I think about it like that, it's hard to complain about the chore of dispensing meds.

Holden seems to be adjusting a little better each day, even seeming happy for short periods of time. He's still throwing up enough to break my heart for him daily, but that's nothing new for him. He has another ear infection, and we're going to his doctor's office in the morning, where he'll probably have to get an antibiotic shot to start his day off. Poor kid.

Overall, he's seeming happier. I'll be satisfied when the smile on his face is more of a permanant thing, but I'm content with making steady progress for now. I'm sure my disappointments are more about setting my expectations too high than anything, but I refuse to set them any lower. He deserves to have the bar set high for him.

I think we set the bar lower for him too often because of all that he's been through, and maybe that's a mistake. It's hard when I've been thinking so much lately about how much Holden has missed, and is still missing out on. Trent tried to take him for a tractor ride last night, which he used to adore, but now the tractor terrifies him. It's another small thing, especially in the big picture of the miracle that is Holden's life, but it gets me down regardless. I feel like we should be providing extra happiness somehow, to make up for all that he's lost, but I realize that's not even possible. I'd settle now for just a little bit of normal happiness. Inside of that beaten little body is a little boy crying to get out, and I'm more determined than ever to help him find his way.

Life is short, but wide. Holden's journey only makes it wider.

Home again, home again...

I guess I should start off with an apology for not updating for so long. In the chaos of getting home and settled in, securing internet access was pretty low on the priority list. I was surprised by how much I've missed having a daily account of the little details of our lives, however mundane or horrible those details were. I know many of you have missed the daily updates as well, and I'm sorry! Please know that if anything major happens with Holden, I will ask someone else to post on here so that everyone is kept in the loop. Otherwise, consider no news good news.

He's still puking, which isn't really an update. He had been doing so much better, and I was loving that for him, but the past couple of days have been rough. The vomiting has returned in full force, and that's even after we reduced the rate on his feeds a little bit. I don't know if it will ever end for him. Ugh.

Our biggest problem with coming home seems to be an adjustment issue. The hospital is the only home Holden has known for almost five months- more than a third of his life. I thought he might remember his real home, especially the things he loved most here, but he doesn't remember anything and it terrifies him. He is constantly freaked out by every little thing, and he's just had a really tough time adjusting. It does seem to be getting a little better each day, but we've spent most of our days and nights up to now trying to comfort him. He's scared enough of the house itself, and when we add visitors to the mix, he is out. He gets so scared of anything new that he screams and shakes with fear. It is the most pathetic and heartbreaking thing I've ever seen.

He's gotten so used to Trent and I always being within feet of him, because we didn't have a choice in a 12x12 hospital room. We can't even leave the room for a second before he starts screaming like someone is ripping him apart. It doesn't matter who's holding him or where we are, he wants us both in sight at all times. Of course, it's not a hardship to spend all of our time with him, but eventually nature calls! I hope he'll grow more confident in his surroundings as time passes.

He's also not a fan of the bathtub. And when I say not a fan, I mean NOT a fan. I thought he'd love being able to play in the water, but he doesn't love anything about bathtime now. I know it's a small thing, but that alone makes me want to cry. There are so many little things that break my heart for him each day. He has been denied so many normal baby things, and it's just not fair. I know life isn't fair, I've learned that lesson many times over. But it seems like such a cruel twist that Holden's had to learn that lesson at such an early age.

We took him to his pediatrician on Friday, then to get labs drawn. We never got a call that afternoon, so I guess we're to assume that everything was okay. I've gotten so used to knowing all of the numbers that I'm having a bit of a panic attack not knowing them now. I just have to get to tomorrow, when everything's open again!

I've finally gotten everything unpacked and put away, although I still have a mountain of medical equipment to put away properly. I cannot stand being disorganized in the least little bit, and the chaos is driving me insane! I'll get to it soon enough, I guess... I'm spending more time holding the little man than anything right now, and that's just fine by me.

We're slowly adjusting to our new routine here, with meds scheduled around the clock and feeding bags needing to be refilled in the middle of the night. I know I survived this sleep deprivation when he was a newborn, but there wasn't so much riding on me then! I'm constantly in a state of thinking I've forgotten something, and it's maddening. That should get better with time, right?

Once again, the only place Holden seems really at ease is outside in the sun, riding in his beloved stroller. We managed to zip-tie a pole to the side of the stroller and rig a coat hanger in it to act as an IV pole outside. (Credit can be given to Daddy for that one.) It may look a little white trash, but it gets the job done!

I'm hoping and praying that Holden adjusts to his "new" home a little better this week. I was so sure that home, sunshine and tractor rides would be just what he needed to lure him around a corner, but that hasn't happened yet. I want my happy boy back. I'm ready for my baby to have a little peace in his life. He deserves that much.

Day 143- Homeward Bound

We've spent the past 24 hours preparing to take our baby home, and it has been a whirlwind! We have all of the supplies we'll need (hopefully), and we've consulted with our many different teams of doctors to set up appointments in the next few weeks. I'm in the process of packing up the last of our things now, and we're hoping to get to leave after his "going home" party at noon. (One of the doctors brought cupcakes for a party... I think everyone else is just as excited as we are!) I'm sure today will be bittersweet, as we've lived here for so long, but I'm looking forward to getting to know our home again! I won't be able to blog daily, since our internet connection at home is sketchy at best, but I will try to update as often as possible. As always, thank you all for your support, encouragement and prayers. We've appreciated all of you, more than you could know. :)

Day 142- HOME tomorrow!

Our big news of the day? Well... We're going HOME tomorrow! (As long as Holden's labs, specifically his BUN, come back with the right numbers in the morning. And as long as the home health companies deliver all of the correct supplies today, as promised. But those are just details. :)

One hundred and forty-three days after checking in for his first surgery, we're taking our baby home. Can you believe it? I can't.

I am excited and terrified and incredibly thankful for the blessings that are ours. And yes, despite all of the hardships and setbacks, we are blessed.

Tomorrow we'll be out the door and on our own. All of us growing up bit by bit. Becoming more confident in our judgment. More confident in our little man’s ability to hold his own. And I'll bet that he'll do more than hold his own... This kid is going to fly.

So good bye, CMC. You've given us nightmares and miracles. You've been a comfort. Overpriced and worth every penny. We’ve hated you. We’ve loved you. We’ve needed you. We will miss you.

Day 140

Now that we have a plan in place for going home, impatience is quickly setting in. I can't believe we're about to call the first act of this beautiful nightmare complete. I can't believe it, trust it, or really begin to breathe myself. I feel like we've been climbing mountains for the past five months. Now we've climbed our latest mountain of sand and we will do our best to stay on top until the ground starts changing underneath our feet again.

With each passing day, we see a little bit more of our boy emerging. It's so much easier for him to embrace happiness when it's not interrupted by constant vomiting, raging fevers and the burning of healing scars. He gets a little bit better every day, in all areas, and I couldn't be more thankful.

We'll be back as guests in this same place soon, when he gets the gift of a new heart. But until then, the world is ours.

Progress. It is sure and steady and remarkable. It will be even more remarkable at home.

Hospitals are not true places of healing. They are places of fixing. Of brilliance. Of life-saving miracles. But nobody leaves a hospital healed. While we are feeling grateful beyond belief, none of us feel healed.

Real healing comes when the spirit feels safe. Home is magic. Family and familiarity and routine. Our smells. Our people. Our space.

The theory is that he may do better outside the hospital than in. Freedom, fields, tractor rides, sunshine... It all leads to a sunnier attitude. It all goes into the mix of healing and overall happiness. I think it's a good theory.

This adventure we're on with Holden has mostly been a nightmare up to this point, with a few joyful moments in the middle. But I continue to believe that he can weave this story into something magical.

All eyes are on you to make it the best fairy tale ever imagined, Holden- fight on.

Day 138

For the first time in a very long time, I feel really optimistic about going home soon. Holden decided to pick a day for a turnaround, and we're in a much different place than we were last week. His vomiting hasn't stopped completely, but it's much more manageable now. He's still coughing and junky, but I think we're on the tail end of that as well. Overall, he feels SO much better, and we almost have our baby back... All 8 kilos of stubborn boy. :)

We spoke with the doctors this morning regarding a realistic plan for getting him home. We have a few hurdles to jump before discharge, but the issues are nothing too major or unattainable. We'll be working on all of that in the next week, and then it's time to pack! (As long as Holden cooperates, and we're praying hard that he will.)

The past couple of weeks, I think Trent and I both got caught up in the depression and hopelessness of what was happening with Holden. With every new setback, our dream of taking him home to wait for his transplant seemed more and more unreachable. I think somewhere along the way, we forgot how many miracles had already been gifted to him. We forgot to have faith that more were sure to come. Holden never forgot that, and he never stopped fighting. Of course, his fight isn't over yet- not by a long shot- but I have more faith than ever that he will come out the winner in this battle.

I've said it before, and I'll keep repeating as necessary... Prayers are answered. Hope is rewarded. Holden never forgot what we should have remembered every single day- An optimistic spirit heals.

We are beyond grateful for your unending prayers. We felt them, every day, and I am on-my-knees grateful.

It's time for greener pastures- literally- so watch out, world. Holden's headed your way. :)

Day 137

Our exciting news for today is that we'll be moving to the floor again sometime this morning. Holden seems to be doing better, and he's vomiting much less than he was. His oxygen requirements are still pretty high and his lungs still sound junky, but we're in a much better place than we were a week ago! He's been awake and flirting with nurses all morning, so I know he feels at least a little bit better. I'm hoping this is step one on our path home, but I don't want to be overly optimistic. I'll try to post a more detailed update soon!

Day 136

I don't have anything major to add to yesterday's post, but I didn't want to worry anyone by skipping a day. He feels a little bit better today, and he's more active and alert. He's vomiting a little bit less, but his cough and lungs still sound pretty bad. Overall, not much has changed, but I feel like maybe he's on an upswing. I'm hoping and praying, at least!

Day 135

We were hoping that our doctors would have something brilliant worked out, but they seem to be as stumped as we are. I don't have much new to add since yesterday, unfortunately. His fever hasn't spiked again, but we're also keeping him dosed around the clock with Tylenol. The cultures we sent off didn't show anything, so we're cleared from isolation/contact precautions. The negative cultures also mean we still don't have any answers. We know something is going on, but we don't know what.

He does seem to be doing a little better today (and I hesitate to type that, since I always seem to jinx it), but he's nowhere near all better. He's been more alert this morning than he has been for the past week, and he doesn't seem to be hurting as much. Hopefully, whatever was going on has passed through his system, and now we can concentrate on getting him better.

His vomiting was back in full force this morning as well, and he wasn't really coughing that much when it hit, so I don't know if we can blame the throwing up on his coughing anymore. Our GI doctor is out of town for spring break, so we won't talk with him until next week. We could get a consult from another doctor, but we're not sure how productive it would be to involve yet another doctor who doesn't really know what's going on. We're going to do another upper GI study to see if that shows anything, and just try to manage the vomiting as best as we can until next week. The attending on the floor this week seems to think it's something like Cyclical Vomiting Syndrome, but he always adds the disclaimer that GI is in no way his specialty.

Everyone seems to have a lot of ideas, but no concrete answers. I'm praying for those answers to come soon, and I hope to have an even better update for tomorrow. Thank you again for your prayers and encouragement. I can't tell you how much they mean to us!

Day 134

One of these days, it has to get better, right? Poor Holden... He's had a horrible night and morning so far. We still don't know if he's caught something viral, if he has a bacterial infection, or if this is all related to something else. Everything is so jumbled and confusing right now.

I think we've figured out the retching. (Maybe.) It seems like he's retching when he's trying to cough and it hurts him, so he holds back a little bit and it comes out as gagging? That's our guess right now, but who knows. We're still going to talk to the GI doctor today, but it may not even be a GI issue at all. Confused yet? Yeah.

He was running a high fever again yesterday, so they took more blood for cultures and did a DFA swab, which put us on isolation/contact precautions until the results come back. That means we get to wear paper gowns and masks around the clock. (It's more for the protection of the other kids in the hospital than him, and it's a huge pain in the rear for us and all of the nurses and doctors.)

His white blood cell count was up yesterday, as was his CRP, so we thought surely he had something viral. But today the counts are down, and our NP thinks something else is going on instead. Another mystery for the little man. It's so incredibly frustrating!!

He pretty much alternates sleeping, coughing and crying, with no alert periods in between. Whatever is going on in that little body of his, it's knocked him down. We started him on antibiotics yesterday, but we had to hold them this morning because the levels were high when they checked them earlier. That's probably due to him not peeing - again. His output has dropped off, and he's swollen again. His creatinine is up again this morning too, so we'll have to be careful with the diuretics.

He's back on the high flow oxygen since we couldn't keep his sats up on the regular canula. If he continues in this direction, he'll end up back on the Vapotherm. It's not the end of the world, but certainly not what we want.

I'm not really sure what we're going to do at this point. I'm waiting for the doctors to come around on their rounds, and hoping they have something brilliant up their sleeves. Until then, we're rocking our poor baby around the clock, watching, waiting, hoping and praying. We really appreciate your continued prayers - he still desperately needs them!

Day 133

It's a new day, but yesterday's problems continue. Trent and I are both growing increasingly frustrated, and our hearts ache for our little man.

We don't have any more answers than we did yesterday. Of course, that's as maddening as ever. He's still throwing up and retching, running fevers and feeling horrible. His retching has become constant, and sounds so horrible that even the nurses are near tears for him. My heart breaks so many times daily, watching him hurt and not being able to make it better. It's such a helpless feeling, and I hate it.

The blood cultures are negative so far. The official results won't be back until tonight (48 hours after collection), but it would have shown something already if a bacterial infection were present. We're doing another type of culture today to check for viral infections, which will also take two days to come back.

The doctors on this floor are stumped, and don't really know what to do for him now. We're going to try a couple of different medications to help with the nausea and retching while we wait for the GI doctor to come in tomorrow. We still don't have much of a game plan, but I really hope we can come up with one soon.


My girls are out of school for Spring Break this week and instead of spending their break with us, they're with their grandparents. Don't get me wrong, I'm sure they are having a blast with the grandparents who adore them and will spoil them rotten... I just wish they could be here with me. I wish a lot of things could be different, I guess. It's just one more thing that sucks about being here. It gets depressing, and very lonely at times. I do have part of my family here, but I miss those girls so much. (I figured that as long as I'm having a pity party today, I might as well throw that in there as well.)

I'm ready to take my baby home. I know I sound like a broken record, but it's past time for this kid to catch a break. He is so very strong, but enough is enough. He's already been denied so much, and it's past time for him to catch up with the world.

I want to see the plan in all this. I want to trust our doctors and nurses and all of the medical professionals who make the daily decisions about our lives. I want to believe that they will be able to find the answers and fix his problems. Giving that kind of trust is growing increasingly harder, and that makes it really hard to remain hopeful. If the doctors are stumped, who do we turn to next??

I am so proud of what Holden has endured, of what he continues to endure with a grace I could never possess. I pray that we will find the answers for him soon. He has been so brave for so long, and he deserves those answers. He has fought so hard for the life that he has, and I know he has a very special purpose in this life. I know that he can change the world. And I believe that someday he will. We just have to get him back out in it and give him the chance.

Day 132- Part 2

I've already posted Holden's update for today, but we had a visitor this afternoon, and now I actually have something good to post. The fabulous Ms. Ren Morrison came by to bring us Holden's pictures from his one-year-old session back in February. Ren is a beautiful person, inside and out, and her light just shines. If you're looking for an amazing photograper to capture true moments- not just pictures- Ren is your girl. Click here to visit her blog. We love you Ren! :)

I had a little trouble picking out my favorites...