Day 109

Today was Dr. Lemler's last day of rotation on our floor. As he was saying his goodbyes, he casually mentioned that they might be thinking about sending us home late next week. We had been told that we could start thinking about going home before, but this was the first time a doctor put a timeline on it for us. Any surgeries that we would put him in for are on hold for at least a month while he gets a little stronger, and they don't see any reason to keep us here that long while we're waiting. Of course, we expect to be back soon- either for his abdominal surgeries or his heart transplant, but it would be such a blessing to have a reprieve from the hospital for a little while. I don't think I've even processed it all yet- We could be going home!!! We handle most of Holden's care in here anyway, and theoretically we could do the same thing at home.

I think I'm excited, but mostly terrified. Handling his care in here means that a competent doctor is only a page away if/when I screw something up. At home, we'll be on our own. Don't get me wrong- this is what we've hoped and prayed for since day one. I'm just not sure we're qualified to be wholly responsible for the little man's care. It's difficult enough to take a baby home from the hospital, but taking a baby home who has such widespread issues completely paralyzes me with fear. I pray that we are strong enough to handle the transition and not forget anything terribly important- like the meds that keep his heart working.

The fact that we're even talking about going home in the near future is an answered prayer- nothing short of a miracle. Holden has already earned a lifetime of being a complete hero in my eyes. He is hope. He is joy. He is rocket-propelled potential.

Overall, I am filled with hope for the future along with a heavy dose of fear. I am hopeful for a future full of "near normal" days for Holden. I am hopeful for many years ahead of watching my son grow into a man, of learning who he is and who he will become. I am hopeful that he will have the chance to pay forward the miracles and kindnesses that have been gifted to him.

But there is also the reality of having a son with a broken heart and the unknown that comes with that- How long will he have to wait for his gift of life? How long will his own heart last? What kind of long-lasting effects can we expect from the devastation of his first year? How can I ever stop watching him and worrying about what's going on in that perfectly imperfect body of his, waiting for another shoe to drop? Riddle me that, Batman...

I want my son to grow up and lead a "normal" life, whatever that is... I want him to grow up and marry a girl who I won't think is good enough for him, and have children of his own. I want him to feel for himself how much a heart can expand when you become a parent. I want him to have the chance to make mistakes and learn from them, and become a stronger man of God because of them. I would be lying if I said the fear of never getting to see these milestones in his life doesn't wear me down some days.

It's easy for outsiders to look at him and think he has never been sick a day in his life. It's easy to look at him with clothes on and never know how many days of his first year were spent in a hospital, and how much he had to go through to have a chance at life. He is one year old, and already he has scars that will never heal. I have moments of overwhelming sorrow for what Holden has already been denied at such a young age. I have moments of complete fear that each day might be the day his heart will stop working before we're able to put a shiny new heart in his sweet little body.

But for the most part I am learning to move past the fear and the sorrow. Some days I'm successful, some days I'm not. I am learning to live, love, laugh, and remember every single day to drop to my knees in thanks. I'm a work in progress, but I'm getting better at it every day.

I am truly thankful for the many blessings that are mine, and I thank God each day for loving us enough to give us the chance to love Holden.

God is good, all the time!

Day 108

Today found me in much better spirits, thankfully. We had a pretty busy day... I'll get the medical junk out of the way first. While the doctors go round and round trying to decide what to do, it looks like we'll be waiting at least a month or so before attempting to put him in for a surgery- if we even do it then. In the meantime, we're going to try a few different things with the NG tube he has in place now. We're going to try and get all of his calories in through the tube at night, and then pull the tube out every morning. This is both good and bad news... He'll be tube free during the day every day, which will help reduce his vomiting and also encourage him to eat more by mouth. The bad part is that we have to replace the tube- every single night. Ugh. I know there are other families out there who do this, and I'm hoping that it eventually gets easier, because right now it still pretty much sucks. However, we're willing to do whatever it takes to help Holden thrive, and it looks like this is our only option right now. So we'll suck it up and be thankful that we still have a little boy with us to worry over. He's more than worth it.

The best part of our day today was this afternoon... Ren Morrison of Ren Morrison Photography so generously came to the hospital to take Holden's one year photos. (As a side note, he doesn't have any tubes in his face at all in the photos. We pulled the feeding tube out this morning, and he was able to go without oxygen support the entire time we were taking pictures!) We LOVED her, and she took some amazing photographs. She has such a sweet, caring heart- and that totally comes through in her work. She's already posted one of the pictures on Facebook and tagged me in it. If we're not friends on Facebook, go to Ren's Facebook page to check it out. She has such a gift, and we're so blessed and grateful that she shared it with us!! She'll be putting more photos up within the week, and I can't wait to share the rest. :)

Not much has changed for Holden between yesterday and today, but I woke up this morning determined to have a new and better perspective- and I think it worked. I took a page out of Holden's book... Just keep smiling no matter what. Even when the world tells you that you've every right to complain, avoid it.

An optimistic spirit heals.

Day 107

We're still waiting on an answer to Holden's feeding tube dilemna. Some feel like we shouldn't do the surgery for the button at all. Some feel like we should wait for a couple of weeks... I'm still not sure why. Some feel like we should go ahead and do it now and get him moving in the right direction.

The doctors who want to keep him just like this don't seem to understand what his life is like. Sure, he has a life, which was more than we could hope for a short time ago. But now it's time to start looking at the quality of his life, and throwing up around the clock is not the quality of life I want for my child. It's not okay to accept less than that just because he's a heart kid. We should be just as worried about his comfort as we would be for a kid who was born with a normal heart... Would any doctor let another otherwise healthy child throw up like this, and just accept that as normal? And he'll be on oxygen as long as the vomiting continues, because we can't work on his lungs when he's already dehydrated and throwing up the meds he needs. It's a neverending circle, and I have had it.

The reality is, it could be a year before Holden gets his new heart. Can we make him live like this for another year? What will the constant vomiting do to his esophagus? How detrimental is it going to be if we can't keep any of his meds down long term? Will his heart get worse? I don't see how it can't... What other options do we have besides an NG tube that is not working for him?? We ask all of these questions and in return we get a lot of sort-of answers, with no concrete solutions. It’s a state of being that is still as maddening as it’s always been.

I feel more than a little helpless today, and I am mad. I don't want to be, but I am. And I don't really care if I'm overreacting at this point. It's just all adding up to a little more than I can take. I realize how selfish this makes me sound. I realize most of my worries have been just that - worries about me. I am so focused on what I need. What I want for him. What I think is fair. Yes, I am selfish.

The truth is, I'm running a little low these days and can feel myself getting very close to the edge. The edge of what? I'm not sure. I think I'm too afraid to look down. Tonight I'll try to regroup. To collect some peace and calm and hold on tightly. Holden needs me cool and collected and focused on what he needs- Not what I need for him.

In the meantime, I'm going to keep my baby as happy and untangled as possible. I'm going to try and remember that in our version of normal, we can only shrug our shoulders and count our blessings. And there truly are many.

So here’s to answers and plans of action. To trusting. To hoping. To asking for prayers to be answered, yet again.

Day 106

I used to think today was nothing more than a silly holiday invented by card companies. (Or bitter women who grew tired of being ignored all year by their husbands.) Now the day has a whole new meaning. February 14th is a Day for Hearts. A special day to honor heart warriors, their families and the many doctors, nurses, surgeons and medical professionals who have dedicated their lives to saving our babies. I never thought I would say this, but I don't think I hate Valentines Day anymore. :)

(I can't take credit for the poem... Someone sent it to me, and I loved it.)

To the over one million families living with broken hearts,
Today is in honor of you.

To the 40,000 babies born this year with a broken heart,
Today is in honor of you.

To the 4,000 babies who will not live to see their first birthday
And to those who have died of a broken heart,
Today is in honor of you.

To the angels among us who mend and care for the tiniest of broken hearts,
Today is in honor of you.

To the little warriors living each day with a broken heart
So we can learn to live with our whole hearts,
Today is in honor of you.

Day 105

Well, we may have made some progress yesterday afternoon. Holden pulled out his feeding tube again, but it actually turned into a learning experience. (Until we had to put it back in last night... That part will never stop sucking.) Once the tube was out, he didn't throw up all afternoon- until we gagged him while forcing meds down his throat- and he ate more in those few hours than he has eaten every other day here combined! So now I wonder if many of his problems (his digestive problems, at least) couldn't be solved if we took the tube out? That's another rock and a hard place though, as he needs the nutrition we can provide through the tube. Another option is to put a feeding tube straight into his stomach instead of down his throat, but that involves a surgery. It's a minor surgery, but I don't think his heart surgeons will approve any surgery until his transplant. This is yet another frustrating dilemna... We're all trying to come up with ideas, so please pray that one of us will be able to come up with something brilliant!

It seems he rediscovered his attitude along with his appetite yesterday... He was being such a mean little thing all afternoon! He didn't want to go to sleep, so he became intent on ripping the glasses off of my face, trying to remove my nose with his hands, biting my fingers off and headbutting. Bad behaivor, yes- but passion nonetheless. And passion is what I like to see in my brave little fighter. If we can just get his body to match his mind, there's no limit to what this little man can do. It's past time to give his body a fighting chance at keeping up with his spirit.

Of course, we had to put the tube back in last night, and now we're back to our new version of normal. I don't like this version- I hate this version- and I want my feisty little man from yesterday back. This just reminds me that we're not really in a better place, it was just a day of reprieve, but at least I have a ray of hope to hold on to now. If we can get his digestive and respiratory issues under control- even if they're just barely under control, we can start thinking about going home. To our real home. I want him to have the chance to sleep in his own crib before he outgrows it. Thankfully, he seems quite content in the monkey cage here at the hospital, as long as his drugs are delivered promptly. So he sleeps and I type, hopeful that yesterday's accidental little twist of fate provides the jump start we need to find our way to the exit door. I'm well aware that it won't be a permanent exit, that we'll be right back here when he gets his new heart. But those are thoughts for another day. Right now I can only think of right now. Patience continues to wear thin though, so it would be great if we could move along the timetable a bit. It's all up to Holden, and I have a feeling he's just waiting for the chance to show us what he's really made of. Of course, it's just like Holden to decide how this is all going to happen. This is his show, 100 percent, and he's reminding us once again that he's running it.

Day 104

Luckily, Holden has had a couple of better days yesterday and today. He doesn't seem to be in as much pain, and he's been in a much better mood. He's still vomiting just as much as before, mostly in the morning and late at night, but the abdominal pain doesn't seem to be as much of an issue now. His lungs are still wet but improving. That could change in the next few days, as the doctors feel like we need to cut back on his diuretics yet again. His BUN and creatinine are still creeping up, and they're worried about permanant damage to his kidneys if we continue to let them trend up. We're stuck between a rock and a hard place, because we'll end up having to sacrifice one set of organs for the other. If we cut the diuretics to help the kidneys, his lungs will suffer, but if we continue trying to keep his lungs dry and happy, his kidneys will suffer. Lungs bounce back more easily than kidneys, so that's the path we have to take. It really, really sucks to have to make choices like this. Holden is such a fickle medical mystery, and we're constantly trying to figure him out and solve new problems. I hope and pray that we can get him to a more stable position in every area, so that we might finally be able to think about taking him home to wait for his heart. We're not even close to that yet, so many more prayers are needed.

Thank you to those of you who have been spreading the word about CHD awareness week... I love you! For those who have asked about ways to donate or help in other ways, here are a few options to check out:

The first book we received as brand-new, ignorant CHD parents was a book called "It's My Heart"... It was given to us as a gift, and it was an invaluable resource for us while we tried to figure out our new world of heart defects.

Visit them at http://www.itsmyheart.org/ to learn more and donate.

"As the country’s leading organization solely committed to CHD research funding, The Children’s Heart Foundation dedicates itself to bringing health, hope and happiness to children and families impacted by a CHD. CHF has funded over $3.6 million of vital, life-saving CHD research since its inception." - The Children's Heart Foundation

Visit them at http://www.childrensheartfoundation.org/ to learn more and donate.

Remember, even if you don't have the time or resources to donate, you can still help by spreading awareness and reminding your pregnant friends to get an ultrasound at 20 weeks, as well as pulse oximetry testing before leaving the hospital after the birth. A little bit goes a long way!

Day 102

This poor kid had yet another rough day. I don't know what's wrong with him this time, but he's in pain somewhere. I can't tell if it's withdrawl or abdominal pain or something new entirely, but he's definitely out of sorts and letting me know about it. He's sleeping somewhat comfortably now after his bath and multiple drugs, and hopefully he'll sleep through the rest of the bad. I'm so ready for him to wake up and smile at the world again, like he used to.

And it's official... After 102 days in this hospital, I am losing my mind. (Some of you might be thinking there wasn't much to lose, and you'd be correct.) I've forgotten where home is, and what it's like to live there. When I talked to Trent earlier this evening, I asked him when he was planning on coming home. It was a stupid question, in retrospect, since he was actually at our home. I don't know when I started thinking of this place as home, and I don't like that I've gotten so comfortable with that idea. Looking around the room, it's easy to see that little by little we're becoming a part of this place. Our clothes are neatly folded and put away in the cabinets, our food is packed away in a makeshift pantry, we have our own cups and coffee and sugar... All little signs that we've made ourselves at home. We've settled into routines, and everything here has become so familiar. I have such a love/hate relationship with this hospital, it amazes me that I would ever consider it home. I wonder sometimes if we'll ever get to go to our real home, to take our baby back to his own crib and highchair. I wonder if he's forgotten what home is like as well, and if this is the only home he remembers. I wonder if that's a blessing somehow...