Pockets of Joy

Something wonderful jarred my memory today, and I feel compelled to share it. Most of you know about Rosemary's struggles though 4 open heart surgeries. Having come out on the other side of it, I can look back and honestly say that there is quite a bit of the hardship that I don't remember. Mostly because I've learned to choose to keep it out of the front of my head and live in the present, which by the grace of God, is absolutely phenomenal right now.

 During our six month stay in the hospital two years ago, I tried to keep my friends and family posted with up to the minute texts informing them of Rosie's status. About 2 months into that six month stay, I began to get sick of my own voice in my head, wondering if I was burdening my loved ones with the constant updates. Then last night, at my cousin's graduation party, my Aunt Jackie gave me a folder with her hand written copy of all of the texts that I had sent to her. Not having read them, I took the folder and burst into tears. It wasn't until last night, right before I laid my head down to sleep, that I opened the folder and read what I had written to my family.

There were specific accounts of Rosie’s pain, multiple chest tube placements to drain fluid, my frustrations in having to live there, not being able to help her or even console her at times, missing my other 2 children, these were all mentally debilitating and felt like knives through this mother’s soul. When she would fall asleep, that’s when I would slip out of the room and find somewhere else to cry. But then a text would come in from a family member or a friend, and it would snap me back into place, give me chuckle, a chance to breathe. Sometimes it was just a feeling of needing to “perk it up” and I found the ability to brighten up Rosie’s day, make her smile, lift her spirits enough to ease her into sleep. She actually lifted my spirits and kept my head above water much more than me doing anything for her. Her smiles, her ability to fight, her resilience and desire to be here…it kept me going.

Those simple text messages recharged me enough to get back into that ring and keep fighting. Those intermittent release valves let just enough pressure out for me to make room for the good stuff. I could feel it. I know that in my darkest hours, my friends and family were praying for Rosie, for me and for my family. I know that’s when I received my pockets of joy. It came out of nowhere, recharged me and sustained me through some very dark times.

As I sat in church today listening to Rev. Keith speak about joy even within the depths of despair, I thought, "I can totally relate." Something lifts you out of the hole you fell into and you gain enough clarity to find peace, to feel joy; joy that keeps your hope alive, and refills your spirit with life again. That reconnection of my head and my heart happened multiple times during that hospital stay with Rose. It’s real. It felt like a “Joy Smack On The Forehead” if you will. I forgot just how dark things were for a while. Today, I was reminded of what it feels like to be reawakened by someone else’s thoughts and prayers for you. So today, I’m sending out my own pockets of joy and sending my thoughts and prayers to those of you who are out there living through some very dark hours in times of a loved one's failing health or anything else that's burdening you today. You’re not alone. Ever.

Wait To Be The Wiser?

Rosemary's cardiac catheterization went very well on Tuesday. Couldn't have gone any better. There were little to no changes from last year's cath. I was elated with their findings. So when I asked if there was a physiological explanation for her recent episodic O2 desatting issues, the doctor explained that it could have been that she was cold and clamped down a bit, or the pulse ox monitor that was used could have been giving a reading that was off. Not likely, but possible. That being said, I was happy to hear that her numbers looked great. So we're good, right?

The doctor also explained that because Rosemary had failed the Fontan once before, she is at an even higher risk for an already high risk procedure. If we wait until her status changes, pressures increase, sats drop, etc. we will increase the risk that much more. Their recommendation is to reattempt the Fontan while she has an optimum situation.

I can't even explain what this feels like. But I'm going to try.

Rosemary has came close to death several times. Each time, she has turned herself around and fought back to be here. During the last 6 month stay at Children's in DC in 2009 when she was going through Fontan failure, they had taken her completely off of GI nutrition and put her on TPN (Total Parenteral Nutrition) through a IV/PIC line in her arm for 6 weeks. That was done as a last effort to determine if it was her GI system or her heart that was contributing the chronic pleural effusions. It was her heart. Watching her struggle to breathe, deal with constant pain, having to get new IV's on an almost daily basis, deteriorate daily and fight to maintain anywhere near a good quality of life, took a mental and spiritual strength I didn't know I had. But Rosemary was and is even stronger than I, she was the one going through the physical torture of a failing heart. It was, by far, the most difficult period of our lives.

So having to think about putting her through that again, I think you can understand why I just don't want to do it. I can remember her surgeon saying that some kids can stay at the Hemi-Fontan/Glenn status up to 10 years. What if Rosie is one of those kids? What if I make the decision to do it and I unnecessarily put her through that hell again? What if we face the effusions again, a failing heart, the possibility of accepting she could die...again? What if her little heart and body just can't take it?

Don't get me wrong, she is bigger, stronger, and the will of this child to live (head down, hands in the air)...let's just give that one right to the glory of God. Her heart had a unique anatomical situation where the atrial septum between her right atria and right ventricle was very narrow. It is now wide open, thanks to a little trim during the 4th open heart and the overall natural growth of her heart. So that may work in her favor to allow for a successful Fontan which, in the end, will allow her to grow into adulthood. So I want her to have success this next time around for obvious reasons.

The other side of this is that we wait. But if something does change in her heart that increases the risk, it puts greater odds against her once again. We are seeing the changes in her already within the last year because of growth. More body tissue means more material to perfuse with oxygen, which taxes the heart a little more with weight gain. She's definitely compensating for this, most of these cardiac kids can. But I am so scared to push it beyond a point where she puts herself in danger. As many CHD parents out there know, it's every doctor's best guess at how your child will respond to a procedure. The only way to tell is to do it.

We have some time to think about it. Nothing is pointing at an emergent situation, but we meet with her cardiologist on the 23rd to discuss a plan for a possible Fontan #2 this summer. I am avoiding this like the plague. But I know that eventually, she will need this. She is already significantly out of breath just walking room to room. She still plays, runs, laughs and has an amazing quality of life right now. I just want to keep her healthy and happy and comfortable. Which, again, is why I am reticent to move on this.

I wish a little angel would come down from heaven and tell us what to do. I'll just have to pray and trust that clarity and the wisdom of whether or not to wait will come to us. If there is anyone out there who has experienced anything similar, please contact me ASAP. I just want to gain the most knowledge I can before contemplating any of this.

We'll keep you posted. Thanks for reading.

Roll With It Baby

First off, it's been way too long since my last update. I have to say, it's mainly because life has been so good and so normal for us that we've been soaking up every ounce of it and not paying attention to much else. It's exciting, to say the least.

As most of you know, it's been 2 years since Rosemary's Fontan take down. She had a catheterization last March to check her pressures and they looked great. She just visited her cardiologist on February 3, 2012 and her function looked great and all seemed well. O2 sats at 86%, very good numbers for her. Her doc did mention that her lower extremity pulses were weaker than her uppers, but that's to be expected with her growth and this current circulation of the Hemi-Fontan (or as we like to call it, the Hemi-Glenntan because of her unique anatomy to this last Fontan takedown).

Anywho, last week, her teacher emailed me to let me know that Rosemary seemed out of it. Not her usual self, a class leader if you will. The next day, I called the school nurse to let her know of the email and to ask her to go to the classroom to do a pulse ox check if that ever came up again. She told me that she would go down that morning just to check in, get a look at her and see how she was doing. Rosemary was participating in the classroom activities, doing an alphabet song, which the nurse said consisted of about 2 legs kicks and a wiggle. She noticed Rosie was particularly winded. She decided to take her to her office and pulse ox her. Her O2 sats were at 64%. Scary. She said she almost called 911. Within 5 minutes, they came back up to her normal range of 84%. She called me immediately to let me know what was going on and that if it happened again, she would be calling 911, I agreed.

I immediately called her cardiologist and he said he wanted to see her ASAP and that we should have her cathed again ASAP.

So here we are.

**PLEASE NOTE other cardiac Moms, I have "pre-registered" Rosie with our local 911 dispatchers. They have her diagnosis, history, her current weight, BP, HR and O2 norms and the addresses and names of her school and daycare providers and the addresses of where she is the majority of her life. That way, if 911 is called, they have a protocol set in place. I live in a relatively rural area, about an hour outside of DC with a local hospital not at all able to handle children with severe conditions like HLHS. I have instructed the dispatchers, upon arrival and evaluation, to contact Children's Hospital in DC with her status to see if immediate transport to their facility is necessary. And let me tell you, if they have to call 911 for her, they WILL need to transport immediately. I recommend that anyone with a fragile child do this in advance so that the information can be available in order to save your child's life. It's worth it.

Tomorrow morning we are first case. Awesome. I love to be there first when all the doctors and nurses are fresh. My initial reaction to needing to go was...damnit! Just being honest. Then I was like, "You know what, if this is what she needs, AMEN! Let's freakin' do this." She's bigger, stronger, and I trust whatever God's plan is for her. We had a conversation this morning.

I despise what the Fontan means to us. But I accept that it has to happen. It was hell for Rosemary the last time she had it. Literal hell. Six chest tubes and six months of agonizing over her quality of life in the hospital, her pain and her inability to punch this thing in the face was excruciating. But you know what, decisions were made, medicine and miracles walked hand in hand and she came through. We're up against the same thing, but I feel, with better odds this time.

I understand the nature of this disease, about as good as anyone, maybe except for the docs. I know my daughter, I know what she can do. I know that I'm not in control, really. And that even the best doctors really have a best guess at how things will turn out.

Here's where I stand: I trust God's will for her. She's a fighter and I will fight as long as she does. My armor is invisible and at the ready. Nothing can penetrate the love I have for my children. And when they're down, I will fight like a bull to get them back up. I have a silent strength in me that gets tapped when (pardon my french) shit hits the fan. I will do whatever it takes to keep Rosie smiling, comfortable and alive.

Make no mistake, I know how vulnerable she is, we are, and I toss that out the window as soon as I think about it. One day at a time. That's how it's always been. Constant denial until it's over. No life outside of where you are. It works for me. Whether she's in the CICU or at home in her bed, every second is cherished and knowing that it could all be taken, literally in a heartbeat, keeps me humble. For that I am thankful.

Amidst all of this, I am a full time nursing student. Just started clinicals last Tuesday. And you know, I could care less about my progress there. Of course I'm trouble shooting with my professors and I found out that I could take an incomplete and pick up next semester where I left off this semester. That's great news to me. I won't lose momentum there. My goal to become a nurse is Rosie inspired. I can't imagine how much better of a Mom I could be with the ability to have even more working knowledge under my belt. In any case, all our bases are covered.

So, we're gonna let it be what it will be, as my Father, Dave Irvin, says. And there it is.

I'll keep you posted. Thanks for reading.