My Dedication to Nathan

So who is Nathan? He’s an angel. He’s our miracle. He’s a stubborn headed kid that fights everything. He smacks his spoon across the room during meals, he purposely chokes on the meds we give him and spits them out. He learned to throw up in the middle of the night just to get our attention. If I block his path in the hallway, he’ll try to go around me and bonk his head into my legs for 20 minutes until I finally give up and let him go through. He kicks his legs, squirms all over, and fights me with everything he has every time I change his poopy diapers. When we’re in the hospital he’s the kid that extubates himself and rips the IV out of his arm the moment the nurse turns their back. After spending the first year of his life on his back he’s learned to hold books open, play with toys, and do just about everything with his feet. His first word wasn’t mommy or daddy, it was “book”. He puts his head forward whenever I see him, his universal sign for please headbutt me daddy. We lay on the floor and he screams and I scream back, that’s how we communicate with each other. He let’s me rock him in my recliner at the end of the night for half an hour before bed but never at any other time of the day. With every ounce of his being he is a fighter. Thank God, he needs to be. He’s my second son, my baby boy with Ebstein’s Anomaly, and I love him with everything I am.

We won’t be at the walk this year because Nathan will be in Minnesota having his 6th open heart surgery. He’s 17 months old. It’s amazing what we’ll go through to make sure our heart kids get a shot at life. It’s worth all the pain, all the tears, and a lifetime of worrying just to see them smile and hear them laugh. His laugh is so infectious it lights up the entire room. Three times now I’ve had to watch Nathan go through drug withdrawals, indescribable pain, and fear. He’s trying so hard to catch up with the rest of the world and we’re here cheering him on at every single minor milestone he achieves. He finally learned to sit up shortly after his first birthday. He just started standing on his own. I’m so sad he has to face another setback.

Whenever he wakes up or goes to sleep he stares at the ceiling in his room. He’s always done it. My wife is convinced there’s an angel watching him at all times and that he can see them. I hope so. The only thing that keeps me going is knowing all the good that’s come from Nathan’s journey. We’ve raised over $6,000 in the past two years for this heart walk because of the friends and family that hear our story and are moved enough to help. We’ve had countless people reach out to us and tell us how much our story inspired them in different ways. So much good has come out of so much sadness. I hope our story and faith can continue to be a testimony to the world that God is real, he loves us, and he has a plan. With faith, even a broken child can move mountains or so they say. I don’t know what Nathan’s future will be. I hope he lives to be 100. Regardless of how this story ends, Nathan WILL have a positive impact on this world.

Happy Mothers Day Jess

When we brought Nathan to Minnesota together on February 12th, the last thing I expected was for Jessica and Nathan to still be there on Mothers day 3 months later. I'm at a loss for words when I try to think about how grateful I am for Jessica. She's an amazing person, and I wouldn't have anyone else by my side helping me raise my kids. She has sat by Nathans side, mostly alone, 12 hours a day, for 3 months straight in a hospital room. That's love. Both of my kids light up when she walks in the room. Nathan will be having a terrible grumpy day for the nurses but when she walks in he's got an ear to ear smile every time. I don't know how she's done it but she's managed to stay strong for that boy and because of her, he's remained happy through this entire journey. Despite the pain and fear he must feel, if his mom's there he smiles and knows everything is going to be OK. How did I get so blessed to find this woman? She was literally made to take care of these children. I had hoped that at least one of my kids would be a daddy's boy but they aren't and they'll never be. Sure I get smiles and laughs and we play together, but when they get sick, or scared, it momma they want to hold them.

On May 20th it'll be 10 years since the day we met. I hope she's home by then. Life apart has been so difficult. In my mind I knew how much she did during the day but now that she's not here and I've had to be a single father for the past 2 months I have really come to appreciate everything she does. Cleaning, shopping, cooking, laundry, taking care of the kids (especially Nathan), etc, etc, etc... What do you get someone like that for Mothers day? If asked her she'd tell me not to get her anything. She'd say "I don't matter", get your Mom something, she's done so much for us. That's my wife, she never asks for anything. Well honey I love you so much. I have this note, some flowers, and a promise for getting your hair done and some massages when you get back into town. If you don't make it back in the next week or so I promise to come back to Minnesota with Landon to visit. Let's hope it doesn't come to that and you guys will be back next week. Fingers crossed, prayers said, no more setbacks, no more delays, I want you guys home now, it's time.

Happy Mothers Day,

Aaron

Heart babies can change the world

I do a good job at ignoring the sadness but sometimes it comes on hard. I'm a freaking mess tonight. I can't stop looking at pictures and videos and thinking about all the good times we've had with Nathan. This trip was supposed to be no more than 2 weeks and it's turned into 2 months with no end in sight. I haven't seen Nathan smile since February 14th at 7AM, right before he went into surgery. I usually do a really good job of separating myself from the reality of what's happening. I can talk about all of his problems in great detail without any trouble (as I'm sure you all know by now). But when I start watching old videos and looking at pictures of him it hits home hard. A couple of weeks ago when they were shocking him I literally begged God to take him home that day if he wasn't meant to live through all of this. I can deal with a lot of suffering for ourselves and Nathan if I know he's going to be OK in the end. He didn't die that day so I can only assume he's meant to live and we just need to keep having faith.

I believe so strongly that nothing but good is going to come out of this situation. I truly believe that heart babies can change the world. All of this will make myself and Jessica better people in the end I think. I've always struggled with having empathy for other people and this seems to be changing that. In the past couple of months Jessica has gotten involved on a lot of different heart mom forums and she does an amazing job at giving advice to other parents that are in our situation. She'll wake up in the middle of the night to answer calls from scared parents she doesn't even know, just to listen to them. She's amazing really, I just don't know how she cares for other people as much as she does. And then there's that High School Class "Nathan's fan club" in room 710. They put together an amazing banner and that awesome karate bear and sent them to us. We don't know these kids, but somehow we matter to them. Then we decided to start this blog and it turns out around 400 different people from all over the world are reading it every day. I hope this blog is encouraging people and helping other heart parents. And of coarse there was the heart walk last year that you all made possible. We had the biggest team in AZ and raised the most money for heart disease charities. None of this would have ever happened if it wasn't for Nathan. I can only imagine the great things he'll do in the future.

Aaron

Getting that dreaded call at 1AM

Jessica called me this morning just before 1AM. Nathan was deep trouble. His HR skyrocketed into the 200's again for no reason and during the emergency he had suddenly clotted off his only IV line. They had no access to give him any meds. Jessica said he looked bad, the worst he's ever looked, blue all over. Nathan doesn't have many areas they can put an IV anymore, he has clotted off everywhere you would normally put one. Emergently they put an IV in his bone. The NICU team was then able to place an IV in his scalp as well and gave him some narcotics and sedation meds to knock him out. Then they shocked him. I heard all of this over the phone, him crying, all of the beeps and doctors working, it felt like I was there. Shocking him worked the first time thankfully, it brought his HR back down where it had been all day.

The priority for the day will be to get the IV out of his bone and into a vein. They'll do an ultra-sound of his arms and legs and find a place they can put it. I'm assuming going down to the OR is out until we can figure out what happened and why. The doctors have no idea why he's doing this and it came out of nowhere. The plan had originally been to pull the pacer out yesterday but they delayed it until today for whatever reason. I'm glad they did because I'd like it in there as a backup device in case something like this happens again. It's spring, and on top of that it's the week of Easter. Spring brings renewal, everything heals and comes back to life this time of year. What's going to happen this week? It's not in any of our hands at this point. I'm hoping and praying for Nathan to come back to us.

Aaron

Back to the OR

The latest and greatest...Nathan will be headed back to the OR. As sad as it is to say, these are becoming familiar words. I'm almost to the point of becoming numb to the sting of all of the bad things that Nathan is enduring.

 I requested a care conference today. This is basically when all of the different medical divisions that are seeing to Nathan's care (e.g., cardiologists, surgeons, intensivists, social workers, etc.) come together to have a powwow to discuss the next plan of action. The deciding factor was that Nathan's pacemaker needs to come out. They feel that no amount of antibiotics can guarantee that the infection that lurks on the pacemaker can 100% be killed. Thus, it needs to be taken out. The question that remained was, do we need to put a temporary pacemaker in?

The answer is, we don't know. So, they decided to turn his pacemaker off today to see what he could do on his own. They will introduce some new meds to see if that can help the heart rate stay higher. When they turned it off he was maintaining in the 90s. Which is super amazing. However, the downfall is that he spiked a fever today; yes, he has a cold or the flu, because why not?! The fever could be what led to a higher heart rate. So, no one knows if he can sustain a good rate without a pacemaker. Only time will tell. Pending this information, we will go to the OR early next week. The silver lining is that maybe, just maybe his heart is in such a good place right now that it may not need a pacemaker ever again (I'm not holding my breath for this conclusion).

There are so many unknowns at this point. I do know that we are all at our wits end trying to figure out the puzzle that is Nathan. I'm so tired of seeing him suffer and be miserable. I'm tired of not knowing what challenge I'll face with the coming day. There has got to be a limit to how many hardships we'll be weighed down with. For the time being, we will face this new ordeal head on and with no fear. At this point, the time that I will be able to come back home is unknown. I guess we'll just take it one day at a time...slow and steady wins the race, right?

Butterflies, rainbows and magical heart fairies

Things are going good. Really good! Too good! People keep coming in the room asking when the other shoe is going to drop. What they've failed to realize is that there is no other shoe. The person wearing the shoes is an amputee and has only one foot :) .

48 hours ago we sent Nathan in for his 5th major heart surgery to replace his pulmonary valve for the second time. After surgery things were immediately 100% better. His heart shrank in size because it's now pumping blood correctly. All of the pressures in each chamber of the heart are perfect. Exactly 1 day later they decided to close his chest and put the pacemaker in. We thought this was highly optimistic because it usually takes a couple of days for the swelling to go down before you can close the chest. He did awesome with the procedure. Now 24 hours after having his chest closed they wanted to switch out the tube they were using to help him breathe to a less invasive tube. They figured since they were taking the tube out anyway they might as well give him a shot to breathe on his own. It was kind of a long shot since he just had a major procedure done yesterday. Well guess what, he's extubated and doing great!

Not sure what to say other than God is good and Dr. Dearani was put on this earth to fix broken hearts. After all of the wild heart rates and shocking over the weekend Jessica and I were both completely sad and starting to give up hope. On Saturday I prayed that Nathan either get better immediately or be taken from us. I can deal with a lot of suffering if I know the end result is going to be good for Nathan but what I can't deal with is him suffering and suffering and then dying. Thinking of him being shocked makes me sick to my stomach. I either wanted it to end quickly or for things to start looking up. Well, prayers answered because he's pulled a 180 and looks better than ever.

I know we have a long way to go and probably some more bumps ahead but for now everything is butterflies, rainbows, and magical heart fairies.

Aaron

Where to start?

As Aaron has previously stated, it has been a rough week. The gist of it being that Nathan has been in and out of several different types of heart rhythms. Currently, he is in atrial flutter. This means that the top part of his heart is fluttering and can't pump appropriately. There is no clear reason why this is occurring. What we do know is that his heart isn't responding to any of the things that gets him out of this strange rhythm (i.e. meds, shocking him).

They have determined that he definitely will need a pacemaker. What is still up in the air is whether he will need another open heart procedure. The surgeon believes that Nathan's new pulmonary valve (the one that takes blood to the lungs from the heart to get oxygen) is already severely faulty. It will need to be replaced sooner rather than later. His thought is, since we are already here, and Nathan is somewhat recovered, we should do it now. Yet, they can't guarantee that a new pulmonary valve won't crap out like this last one did.

This is an incredibly tough decision to make as a parent. We don't know what the right answer is. Do we say 'yes, do it' and then see amazing results or do we see the worst possible results? Do we say 'no, not now, lets wait' and he gets better or does he go into failure at home and we are fighting to get him to surgery quickly to save his life? We don't know the answer.

At this point, we are praying that the choice is taken out of our hands and the answer becomes obvious. We are too afraid to make a choice and have that choice backfire in our faces. What if the choice we decide on ends up meaning that Nathan's life ceases to exist? How can we live with ourselves? As a couple who functions so well as a team, we are finding ourselves split on what to do. We are practically across the country from one another trying to make a life altering decision for our 9 month old son. How do we do such a thing? How do we not bicker at one another? How do we not get angry and question everything? Who is right, who is wrong?

The answer is...we don't know!

In light of this new information, Aaron is trying to arrange to come back to Minnesota. I want so desperately to see him again, but not under these circumstances. I wish that my seeing him meant that Nathan and I were coming back home. I wish that it meant that I got to see Landon again. I've not seen him for almost 6 weeks. How do I survive for so long without seeing my other child? I never thought that I could go more than a few days without seeing my children. Now I know how truly heartbreaking it is not to see Landon. I wouldn't wish this kind of journey, and this kind of suffering, on the Devil! No one deserves this! I'm pretty sure that I was a horrible person in a past life because I'm definitely making up for it in this one.

I apologize for the incessant rant, but I had to express all of this somewhere. Tomorrow will be the day where we make the BIG decision for Nathan. I pray that we are guided to make the right decision and that our son will make it through all of this.