Griffin is now a year old. A whole year has gone by and it almost seems unreal. Most parents get all geared up for the first birthday…planning for weeks, sending invitations, ordering a special cake, getting cute presents, etc. And then there’s us. We didn’t even buy a present, we didn’t even think about it. We sent out a text to family members to be at the hospital by 5pm so we could do a quick “Happy Birthday” and eat some cake. Cake that I bought at Giant Eagle the day of, and had them write a quick little happy birthday message on it. Oh, and balloons. I bought some balloons. The thing is, for days all I could think of was not that he was turning one and we needed to have some lavish party that he would never remember, but that he survived a whole year despite what so many medical professionals thought.

I look at Griffin now and think about the times when NCH had lost all hope for him. They refused to do the surgery he needed. They didn’t think it was a good idea for us to fly to California and get care at LPCH.  Honestly, it was a shit show the first five months of his life. And if we as his parents hadn’t fought so hard, he wouldn’t be here. That thought alone makes me cringe with disgust. And you may be thinking, “Oh I’m sure LPCH was the same way or maybe he was just more sick here than he was there”. But you’re wrong. If you haven’t read my other blogs or you’re not updated on him regularly then I’ll have you know that he went through tremendously more at LPCH than he ever has at NCH.  You may also be thinking that I shouldn’t be bashing or upset with anyone because after all, he’s alive and well. But you’re also wrong. Because a parent shouldn’t have to fight so hard for their child while doctors are discouraging them. If a family has hope, let them have hope. And you better be fighting your damn hardest for them too, otherwise, why are you in the medical field? Fighting for them includes encouraging second opinions with other hospitals, which for the record, they didn’t. We went down that road on our own.

And it makes me irate that at one point, they drove the thought of him dying so far into us that for one second, it flashed through my head that they were right. That we were going to have to let our baby die while we were holding him. Inside these white, sterile hospital walls where he had been since the day he was born. Can you imagine being a parent and asking a doctor if it’s OK if you take your baby outside so he can die in the sunlight instead of inside the hospital? It feels like you’re reaching inside your chest and squeezing your heart so hard that it bursts, draining all the life and happiness out of you.

Without warning they gave us four options after we were already in talks about going to LPCH. We could “put him on the cath table and he would die, put him in a plane and he would die at take off, sedate him heavily where he would have no quality of life until he passed away, or take him off the vent and let him pass away in our arms”. They were giving us options and every one of those options had the same ending (according to them) which was inevitable death. Griffin was two months old at this point. We had already had two months of being his parents. Learning what he liked, what he didn’t like. Taking a crash course in nursing and respiratory therapy because that was our life everyday. But they had no hope, they were giving up. Griffin was desatting (losing oxygen) constantly all day at this point and getting worse as the weeks went on. We were in constant fear and it was only made worse by the lack of confidence in the team caring for him. 

We went home that night and made the joint decision that we weren’t going to do what the doctors wanted. We weren’t going to take Griffin off the vent to let him die. We were going to fight. We were going to put him on that cath table so we could send the results to Stanford. And once that was over we were going to put him on that plane. Because at the end of the day, giving up was not an option. We knew the risks. We knew what the chances of his life were as they were wheeling him away for that first heart cath. While we stood there with our family crying and somberly walked to the waiting area. As we sat, paced, and went outside for some fresh air. For hours we waited, only to prove to everyone that we were right. That he was strong enough. After that, I never faltered again in believing if he was strong enough or not.

Since then he got on the plane they were sure would be certain death and slept the entire time to California. Yes we had an extremely rocky road while we were out there but that road led us to here. A week away from being discharged and taking Griffin home for the first time. He may not have had the normal first year upbringing. He didn’t get the cool sign on his birthday that said what he loved eating, his favorite thing to say, what date he rolled over/walked the first time. But nothing about Griffin is normal. If I had made a sign I would have listed all of the battles he won. The five heart caths, two open heart surgeries, a sternotomy, a tracheostomy, countless imaging procedures…the list goes on.

He’s one year old now and he has the battle scars to prove to everyone that he is a warrior. No one can say anything different.

Don’t be afraid of being outnumbered. A lion walks alone while the sheep flock together.


“Patience is a virtue”…the thought runs through my head as I quickly run through everything happening in life. Having a child in the hospital, having kids at home waiting on us to return, having a fiance being spread as thin as a piece of paper to keep bills paid and still see all of his kids, including the one in California. Meaning constantly going back and forth. He gets to be in California and be with Griffin and I, and then he’s back in Ohio to be with the other kids and to work. I don’t give him enough credit, no matter how many times I tell him how proud I am of him, it just doesn’t suffice. It’s more than just being away from the kids, he deals with the little things that pile up, that I would normally be there to take care of with him. And to top it off he has court for custody stuff that should be over (because we were awarded full-custody for good reason back in July). Unfortunately, some people are just so full of hate and jealousy that trying to remove their negativity is like trying to pry out a splinter that has been lodged for far too long, festering under the skin. He’s been working on that metaphorical splinter for what seems like decades but it’s a slow, painful process. So the result of our current “waiting period” is all the same, extraordinary amounts of stress. Stress from Griffin, stress from court, stress from the kids being upset about us gone, stress from normal life things such as bills, etc. It’s all a mess.

So back to “patience is a virtue”. How can one feel as though they’re able to be patient with what feels like the entire world on their shoulders? Tell me, please. Because if anyone has some superior enlightenment on how to be tension-free with everything that’s going on, I’d love to hear it. The problem is, if you’re not in my shoes, and you try to give me advice on our situation, the value of the advice is masked with ignorance. Not for lack of trying to understand what we’re going through as a family but just not being involved. No one is as deep in these trenches as Jarryl and I. It’s our son, ours and the kids lives that have been turned upside down. The best anyone can do is offer kind words soaked in positivity. It might sound as though I don’t want that, it’s just that it’s all I’ve been hearing for months and it gets to the point that it’s like a broken record. I know I’m strong, I know Griffin’s strong, I know Jarryl’s strong, I know the kids are strong, it just doesn’t mean that we should have to be. We should be at home, cuddled under blankets on the couch because it’s snowing and the house is chilly. Holding Griffin while listening to the kids argue over someone laying too close to the other one, or deciding what movie to watch next.

The point is, virtues suck. I don’t want to be patient. I want to have a plan. I want to know the next steps instead of being stuck in this unending game of unknown resolutions. But it’s not that easy, there are a ton of variables to consider before deciding on our next steps in this medical journey. The pacemaker hasn’t been placed back in yet, we’re still operating on temporary wires. Temporary wires, wires that are connected to his heart but advance through his abdomen and exit through his belly to connect to an external pacemaker. The wires are secured with only stitches and tape. Stitches and tape are keeping my child alive. Let that sink in.

Do we place a bigger shunt when the new pacemaker goes in? Do we wait and just place the pacemaker and do nothing else? Do we wait two more weeks or four more weeks? Do we continue to make progress on the vent or ease up a bit? Do we want to ween more sedation before the next surgery or leave it alone so he doesn’t withdrawal so bad? We’re literally walking a tightrope. One bad decision can have us falling off and plummeting to the unknown.  The questions and fear are endless, and this will never end. CHD is not curable, Griffin will never be “fixed”. A full repair does not mean he will not be back. There will be surgeries his entire life, for every child with this loathed disease.

And I might just be feeling extra irritable about the waiting game because yesterday was a milestone birthday. Yesterday I turned 30. And yesterday I didn’t have my family with me. I did, however, have my best friend. Flying 2,456 miles to make sure I didn’t spend my birthday alone. It’s an undeniable act of loyalty and friendship and I couldn’t love her more for it. She tried her best at keeping me happy and she succeeded, until I decided it was a good idea to get a couple drinks and cried at the bar once I started thinking about Jarryl and the kids. Ugly cried, I never cry when I drink, ever. Props to her again for helping me come out of it.

At the end of the day I just want Griffin to be as healthy as possible so we can make the journey back to Ohio. I’m just sucking at the waiting part.

Patience is the calm acceptance that things can happen in a different order than the one you have in mind. – David G. Allen


California Living.

I realized today that with all the updates I’ve done and blogs I’ve wrote, I haven’t really provided a full update on everything that has been going on out here in California. With that being said, I’ll provide a play-by-play on our Stanford journey up to today. This one is a tad lengthy so bare with me.

Lucille Packard Children’s Hospital Stanford – Palo Alto, California

We arrived here on September 12th with the expectation that we would be getting a room in the CVICU, however, the day we left they realized there weren’t enough beds so they accommodated us by placing us in the NICU until a space became available. Luckily we weren’t in the NICU long because it was a complete 180 from the NICU at NCH. Instead of a private room set-up it was “pods”, meaning there were 10 beds in one room and there was literally enough space for one person between each bed. This was completely different than what we had experienced thus far but we dealt with it.

Due to Griffins constant desatting (oxygen levels dropping below their preferred 75% for his condition – normally 100% for healthy people) we were moved to the CVICU quicker than they had planned.

Quick side note to anyone who doesn’t quite understand this; we all live at 100% oxygen levels. But TOF/PA/MAPCAS (Griffins diagnoses) babies live at lower percentages before their full repair because their blood is “mixing” in the heart chambers, meaning their oxygenated and non-oxygenated blood is mixing together because of a VSD (hole in the heart). That same under-oxygenated blood is then being sent out into the body via (in Griffins case, because he wasn’t born with a pulmonary artery) the aorta and MAPCAS. This is also why they are called “blue babies”, because they aren’t getting the proper amount of oxygen so they’re literally turning blue. Scary I know. 

We were in the CVICU for a week before Griffin starting coughing a lot, so they swabbed him and he was diagnosed with Rhinovirus (common cold) which then pushed surgery back 4-6 weeks. (This is because if he had the surgery while his lungs were fighting a cold, it would make his recovery 10x harder) This was a huge blow because we had fully expected to have the surgery within the next week and then be on the road to recovery. We also didn’t plan on being out here for much longer than a month, funny joke as we’re hitting the three month mark in two days…

Since Griffin would have to wait for the surgery but wasn’t stable enough to go “home” with us to the Ronald McDonald House to wait it out, they moved us to the step-down floor unit. It’s the same type of care, only its not an ICU. We were there for two nights before shit hit the fan.

September 30th, 2018

Worst day of our lives. We got a call from the hospital at 7:30am letting us know that Griffin had a started desatting and in turn his heart stopped working. (This is the reason “desats” are so scary. If your organs aren’t getting the proper amount of oxygen they will eventually stop working properly) The nurse informed me that they were currently doing CPR and had been for about 10 minutes. She wanted us to get to the hospital as quickly as we could.

We arrived at the hospital and learned that what they were calling his episode was an “arrest”. We all know what that means, Griffin had a heart attack. His heart stopped working for 30 minutes. The nurses did CPR the entire time and brought him back to life. We will be forever indebted to them for that. Everyone here performed a miracle by getting his heart pumping again and for taking higher measures and placing him on ECMO aka life support.

Seeing him on ECMO was hard, but not as hard as what was to come. And honestly, I think the fact that I knew it saved his life made it easier for me to handle. He was on ECMO for a total of 8 days. He came off on his 6 month birthday, October 8th, 2018.

Just to paint a picture, when a baby is placed on ECMO they are laying completely straight with their head turned to the side, and they aren’t allowed to move so they are heavily sedated and on paralyzing medications. This is because there are two large cannulas placed into the side of their neck. One is pumping blood into the body and the other is pulling blood out. Should a cannula be dislodged, the child would bleed out in minutes. It’s extremely risky but it’s a life saving measure to let the heart and lungs rest so they can heal.

He would have been on ECMO longer if it were up to the doctors but due to all of the blood thinners he was on he starting having blood in his urine. And even though there was so much blood thinners running through the blood, the cannulas had clots in them which could be very dangerous. So their hands were forced and they had to take the chance of taking him off and hoping he did well. Which he did. Proud mom moment. Once he was off the wait was back on for surgery. This time the surgeon didn’t want to take chances. He needed to wait at least a week to let Griffin’s body recover from ECMO but he couldn’t wait too long due to fear of another arrest.

October 19th, 2018

Griffin’s surgery day. They were able to wait eleven days after coming off of ECMO, giving him the best chance they could. They took him down and started the procedure around 8am with the intention of doing a full repair, meaning not only would they pull all of the MAPCAS to a centralized point and create a pulmonary artery, but also close the VSD. However, after a 15 hour surgery we finally got to speak to the man himself, Dr. Frank Hanley. The only surgeon who does the full repair in one swoop and the man who literally paved the way for this type of surgery. He is the TOF/PA/MAPCAS king and he is world renowned. He let us know that unfortunately (and as expected due to Griffin’s condition going into surgery) Griffin was unable to get the full repair in one surgery. This was because during the “flow test”, his pressures in the mapcas/shunt were too high.

This basically means that the blood flowing from his heart would have too much resistance getting to his lungs/body because the MAPCAS were so small and needed time to grow before closing the VSD and causing more pressure. If he were to close something with high pressures it would eventually lead to Pulmonary Hypertension, or heart failure. These are words that no heart parent wants to hear. 

He also let us know that due to inflammation, Griffin came out of surgery with his chest still open. Yes, you read that correctly, his chest was left open as to not put more pressure on the heart and lungs because there was so much swelling. When a chest is left open, it’s not covered with something that you can’t see through. We could literally walk up to him and see his heart and lungs pumping in his chest. It was mortifying but became abnormally normal to us during the coming days. It just became something that was, something that just had to happen to get him to the next step.

After surgery Griffin also developed “heart block”.

This is when the top chamber of the heart and bottom chamber of the heart don’t communicate. To better explain, when the top chamber pumps in a normal heart, the bottom chamber pumps at a specific time right afterwards. However, in Griffins case, his bottom chamber was taking longer to pump than it should.

So, in comes the pacemaker. On the day they finally closed his chest (October 29th, 2018) they also placed a pacemaker. Due to this he will need surgeries intermittently throughout his life to change the batteries. This was another blow but again, just something else that we have to deal with so he can be healthy.

Once surgery and chest closure were over we were on the road to recovery. It has just been a lot slower and more stressful than we anticipated. Since chest closure we have dealt with extremely high fevers, morphine withdrawals (these are awful), ventilator fluctuations, and infections. Due to all of this, and the length of time it was taking him to come off the ventilator, they decided that giving him a trach would be the fastest and easiest way to get him home and get him stronger. Jarryl and I talked about the trach for a week before we both agreed that they were right and it was just another something that he needed, but this was a hard decision. They decided to do a cath beforehand just to make sure the vent problems weren’t stemming from another heart problem, which it wasn’t. So they set a date and he was supposed to have surgery for the trach on November, 30th 2018. But that didn’t go as planned either.

The week of surgery his belly started becoming really distended so they got an x-ray and it showed fluid around the stomach. They did an in-room procedure and placed a tube in his belly to drain it. They were expecting abdominal fluid, but instead it was blood. They had no explanation on why his belly would be filling with blood. Luckily it started clearing up on its own that same day and continued to do so over the next two days. The surgery was set for Friday and on Thursday they “clamped” the tube in his stomach because it wasn’t draining much and there was no sign of blood. However, throughout the day Thursday, after clamping, it was clear that his belly was getting bigger and he was uncomfortable. When he started desatting they decided it was time to open the clamp to drain a little but they really wanted him to pee off the excess fluid. But when the doctor started pulling back the syringe to get fluid out, it wasn’t abdominal fluid. It was blood, again. And this time, they drained 800ml of it.

To put that into perspective, almost 1 liter of blood and fluid drained out. Adults can’t even handle that much fluid sitting in their abdomen, let alone an 8 month old baby. 

Everyone was in his room trying to figure out what was going on. They decided to start a blood transfusion because he had lost so much fluid and they were worried it would affect his blood pressure. It was then that Jarryl figured out the problem. Jarryl, not the doctors, not the nurses, but Griffins amazing father. He stood up to check on him and realized that the draining tube was turning more bloody again after the transfusion had started. We had already had previous issues with the PICC line so when he realized the blood was being sent via the PICC line it all made sense. After a few tests it was verified that the PICC line had caused a small tear in the vein during the heart cath a week before, which was causing everything that was being pushed through the PICC to end up in his abdomen instead of his blood like it’s suppose to. We were able to piece together on why it had been taking more medication that usual to get him sedated, they had literally gave him THREE doses of a paralytic just days before to place the tube because it wasn’t affecting him. Now we knew why.

Our poor baby wasn’t getting any of his needed medications like he was suppose to because of this tear. And thankfully, he handled it like a champ. Another proud mom moment. Luckily the tear was small enough to just heal on it’s own once they pulled the PICC line out and he wouldn’t need surgery.

December 4th, 2018

Trach surgery day. This day was harder on me than any other day. I’ve chalked that up to this being more permanent than anything else. ECMO was 8 days. Chest open was 10 days. PICC line problem was corrected immediately.

But the amount of time he will need the trach is unknown. It won’t be permanent, we know that, but he will probably have it for a couple years. And it’s so hard because the only reason he needs the trach is due to a narrowing in his throat caused by scar tissue caused by trauma from the ventilation tube. It just seems so unfair and it has hit me hard. It also makes me feel robbed. I had dreamed and dreamed of the day after he recovered from surgery to just pick him up without being attached to anything but a pulse ox (measures oxygenation in the body). But we won’t get that, we’ll have to deal with the trach tubes, and have to haul around a ventilator at home…I clearly have some of my own healing to do in order to be ok with all of this. But I’ll get there, I always do.

So here we are now, recovering from the trach and he has been doing amazing. Which makes him having the trach a little easier on this tired mama. He smiles everyday all day and he’s just so amazing to be so happy after being through so much. He makes me so incredibly proud. He is going through withdrawals again from being put back on morphine & dex for the procedure but the drips are off and he’s taking it day by day. Smiling at me even after he just vomited a little from the withdrawal. 

We still have a few weeks to go, our doctors think it won’t be until after Christmas before we come home. But with his history they want to be safe and make sure he’s ready, and we appreciate that even if it’s hard for us to accept. And in another six to nine months we’ll be back out here for his full repair. Hopefully the next surgery won’t affect him so hard and he will have a smooth recovery. Our family needs that. 

“Magic happens when you do not give up, even though you want to. The universe always falls in love with a stubborn heart”

Code Blue

Everyone in the world is fearful at some point in their life. There are thousands of reasons why someone would be afraid of something. To some people that fear might feel like the end of the world, like nothing could be worse than what they are going through in that single moment. That’s a fear that myself and many others in my position of having a medically complex child have felt. The fear that I’m talking about is called Code Blue.

To give some insight, our son was diagnosed with Congenital Heart Disease when I was 20 weeks pregnant. Knowing your unborn baby is going to have to go through open heart surgery not once but multiple times shortly after birth would be enough dread in itself. However, looking back that was the easy part.

Fast forward through a premature birth by 10 weeks, two separate NEC scares, constantly needing the vent to breathe, brain damage due to consistent desaturation spells, doctors wanting us to withdraw, a flight across the country, and a cold. We thought we had finally made it, he was set to have surgery 4-6 weeks after he recovered from Rhinovirus. The hospital was moving us to the floor unit to wait out our time until the day our son was wheeled into the O.R. to receive his life saving surgery. Only it didn’t work out that way.

One of my greatest fears since starting this journey happened Sept. 30th 2018 at 7:30am. The type of gut-wrenching fear that no parent wants to (or should have to) endure.

While Jarryl and I were sleeping the hospital called. The beginning of the conversation is a blur now. All I remember is a woman telling me that Griffin had coded and they were in the middle of doing CPR. By this time he had been down about 10 minutes and they wanted us to get to the hospital quickly. I remember jumping out of bed and motioning to Jarryl that he needed to get up too, all the while listening to her say the words “we’re going to start him on ECMO”. For those of you that aren’t familiar with it, ECMO is life support, plain and simple.

Neither one of us understood why this was happening, we didn’t have words, we just went into auto-pilot. We got dressed, ran downstairs, and flagged down the shuttle to the hospital. Both of us were being as calm as possible until one of the cardiovascular surgeons ran into the hospital behind us at full speed. This was probably my waking point, not that I didn’t realize how bad the situation was before, but more that I was in a daze because I couldn’t believe it was happening. Seeing the surgeon sprinting through the hospital filled both of us with a dread that we almost couldn’t bare.

We took off behind him, running to the room Griffin was in last, but he wasn’t there. They had already rushed him back to the ICU. Making our way over, we were headed off by the charge nurse. At least I think so, honestly at this point I can’t remember who talked to us first, my memory of that day is foggy. Like my mind doesn’t want to remember. She told us Griffin had received CPR for 30 minutes…30 minutes of his heart not working and the nurses trying to pound the life back into him. No parent alive should have to hear those words, no one. She told us to stay in the waiting area until they were done connecting him to the ECMO machine. So we waited, and we waited, and we waited. During that time I called my mom, and the screams and cries from the other end of the phone just solidified that this was everyone in the family’s worst fear. Griffin was on the edge of life or death and Jarryl and I couldn’t do anything but hold onto each other.

Griffin survived that day. And he still continues to survive and fight for his life. Since then he has had his open heart surgery and he is still recovering. But I can’t say that for all of the babies and children out there. Not all of them are so lucky and some parents start to join other Facebook groups. Not groups for the condition their little heart warrior has, but groups for grieving parents. Parents that had children that lost their battle and gained their wings. Those are the groups that no one wants to become a part of but know that it’s a stronger possibility with how fragile our little ones are.

So we fight with every tooth and nail we have to make sure it doesn’t happen. We fly across the country to have the best surgeons, we sleep in hospital rooms day in and day out to make sure our child is being taken care of correctly. We learn about all of the medicines, machines, diagnoses, and treatments. We basically become nurses ourselves without having the degree. And we love them with everything we’ve got. Because at the end of the day we know that love is the best medicine they can get.

“To escape fear, you have to go through it, not around it” – Richie Norton