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!)