Our Gifts

I seem to have a bad habit of only checking in every so often. This is changing. Today.

We've had an exciting past few months filled with good news, positive perspectives and amazing opportunities.

Rosemary had her last cardiology check up December 13. Verdict...heart function is good, no changes. No discussion of transplant this time. Possible cath in the spring, but we're going to stay the course. Rosemary had her Fontan taken down in March 2010, after a tumultuous, yet triumphant 6 month stay at Children's National Medical Center in DC. We've been out and on autopilot ever since.

I'm honored to say that Rosie has been nominated as the Face of Heart for the American Heart Association's Open Your Heart Fundraising Gala this year! BIG deal! Being able to share our "why" in a way that may help other heart families is HUGE! February is Heart Month and we are going to be very busy. I am so proud of her. She and I began making appearances and sharing her story back in December at events like the Go Red For Women kick off campaign, and we recently began attending pep rallies around Maryland for the Annual Jump Rope For Heart campaign.

Rosie has begun to gain a deeper and more profound understanding of just how many people she has touched because of her heart. She's had a roller coaster of emotions, some days good, some days not so good. On particularly hard days, she's said things like, "Why was I born this way? I just want to be like everyone else! I don't want to be special...I'm scared."I try to tell her to look around at where we are, how far she's come. I talk about God's plan for her, that although we don't always know what lies ahead, we need to trust that He is leading the way. He got us out of hell on Earth, and we're living a pretty amazing life. I remind her of all of the children and adults who have hugged her, thanked her, told her she was their hero, that they were proud of her, and that she changed the way they think about their own hearts and how to better take care of themselves...including her 10 year old brother, Lee, and her 18 year old sister, Shea. Their relationship has changed too. We all have a greater sense of gratitude for how far we have come since her last open heart.

Last night while I was binge watching "This Is Us", her feeder went off with that annoying, dual, high pitched chirp. She's an erratic sleeper so her tossing and turning causes her feeding tube to kink, subsequently creating a panic for anyone within ear shot of that damn thing. I smiled and said, "Rosie..."...as if she did it on purpose...and I marched quietly up the stairs and reset it. It went off again. Each time I went up to reset it, I thought to myself, literally, "Thank you God for my life. My very normal, not living in a hospital life." I came back downstairs and resumed my TV binge and immersed myself back into the tube, forgetting who and where I was. Just as I was about to LOL, the feeder went off...again. It felt different. I can't explain it. Instead of smiling and calmly climbing the stairs, I ran up there, heart racing and when I got to her bed, I stared, watching for her chest to rise and fall, like it always does. And it did. My heart was pounding. I have no idea why this time I thought there was a need to freak out, but I did. For no reason, thank God. Haven't done that in a while.

It was fine, just like the last 753 times it went off. So I checked myself back into sanity, smelled her forehead, kissed it, looked down at her perfect little feet, and I kissed them too. I actually smelled them before I kissed them, they don't stink. TMI. Then I gently tucked them back under the blankets.

She's home. She's breathing, unassisted. Unlabored. Spontaneously.

There is no pain, anywhere. It's quiet, (I dare say). She's comfortable. She's dreaming about...well, whatever wonderful things that Rosie dreams about, because she's had 6 amazing years of healing, growing and living outside of the hospital. And THAT,  my friends, is the best gift anyone could possibly have.

Feeling incredibly grateful today, and everyday, for our gifts.

Praying for our friends in the CHD community who have lost, and are losing their loved ones, in particular, sweet Noah Bella Michaelis and Kolton Hessman. God speed, sweet warrior angels.

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.

Where We Are With Rosie

My day started knowing that at 4pm this afternoon, the cardiology case conference would be discussing Rosemary's failing heart. This has been the most difficult week of my life. Rosemary's little heart is not working so great, she is experiencing Fontan failure, this was the supposed to be her last repair. She has been on TPN nutrition for about 6 weeks, food through an IV, to rule out her pleural effusion problem stemming from a GI issue. She has had a GJ tube placed and replaced for feeds 3 times in one month. When I got here last Monday, her face was puffy, chest & abdomen full of dark blue veins and unable to speak or be comfortable. They restarted her formula feeds on Wednesday afternoon with hopes on sending us to a step down facility in Baltimore. By Friday morning, she was in respiratory distress again and her pleural effusion had returned. They gave her a total of 5 doses of IV lasix Thursday and her xrays that night were better. But Friday morning, she was working to breath again and she just wasn't doing well. Her xrays looked bad so they gave her another 5 doses total of IV lasix to combat the effusions that had again returned.

They moved us to a flexroom in the Heart & Kidney Unit, which has the ability to be a CICU room if necessary. There are basically two options: 1) Another open heart surgery to try to repair the narrowing of her atrial septum, which they felt was the root of her effusions. The pressure gradient across the septum and Fontan have been slowy increasing and not going in the direction we had hoped. This surgery has a 50% chance of survival with the possibility that she would need a pacemaker, and at best, that surgery may only have a 10% chance of improving the overall condition of her heart, 2) Heart Transplantation.

The surgeon is not crazy about the first option, he is thinking that transplantation would be Rosie's best chance. Her cardologist agreed. Because they would be sending us to NY Presbyterian where she had her first 2 open heart surgeries, her Cardiologist there would oversee the transplant evaluation. She was not excited about the transplant option for Rosie.

That's where we stand. It's been difficult coming to terms with these options as they are the only ones we have. Each day is a little harder, facing the possible outcome of losing her either way...well, how do I begin to accept that one. I'm dealing. Accepting. Praying. Knowing that God has complete control and whatever his will, will be done. She was born with half of a heart. Twenty-five years ago, she wouldn't have mae it 3 weeks. We intervened medically to try to repair it. She has done everything that she is supposed to do, and she is still suffering. If she stays, I get to be her Mom. If she doesn't, I'll have to wait to see her when I get Home.

Ultimately, my main concern is her quality of life. It has been slowly but steadiy slipping out of our grasp. She is working so hard just to breathe. I could feel this moment coming around the corner last week, all of the doctors and nurses became much more attentive to Rosie and my needs. Their faces were undeniably readable. Sorry smiles, asking if they could do anything for us. This has increasingly become the norm for me as I walk through the hallways that have been my home for the last 5 1/2 months.

During rounds this morning, I told the doctors again that I am a reality based Mom. I like to know the facts. I want to know exactly what they are thinking and feeling in their gut in the 3-5 seconds when they leave my door until they get to the next. I need closure on the facts so that I can begin to deal with the emotional overhaul that deciding on whether or not to try for a transplant is going to be the absolute best decision for Rosie's quality of life. There are a few other major elements that are playing into this picture for us. Her lungs have not been doing so great with these effusions. She now has a pneomothorax, air pocket, developing in her left lung and she still has an unknown pocket of fluid or substance in between her two right lobes. Her liver has been put to the test because of the Fontan, but the 6 weeks of TPN nutrition has also now taken its toll. Her liver is swollen and has dropped. She has never really been able to eat normally and has thrown up just about every day of her life. All of these things will weigh in on whether or not they will even consider her for a transplant.

If we decide to go transplant, we will be sent back to NY to Children's Hospital in Manhattan. We will have to make sure that we are within a 3 hour distance from the hospital so that in the event that a heart became available, we could be there in a minute.

We have a lot of extremely difficult life changing choices to consider. I am scared out of my mind to make any decision. I selfishly want my daughter to live because I love her and I want her to be well. But as I sit here typing, I can hear her breathing getting louder and faster, she is working harder everyday just to maintain vital signs. It's not what I want for her. I don't want her to struggle anymore. I want her to be the strong, full of life child I knew a year ago.

So I will pray tonight that wisdom in this situation be evident, that my gut feeling be my guide. That whatever is down this pike for Rosie, be the absolute best decision possible for her quality of life. Please pray too, for Rosie's strength to fight, our strength to continue to be a light for her and keep her spirits as best as they can be. For our families. I have two other children that love her. All of our hearts are mending at the mending that's been done to her's.

Thank you for reading. If you have any thoughts, advice, words of encouragement, I'm all ears. This is difficult. I am finding peace and small answers in the quiet of the night.

Totally Over It

We were discharged on Tuesday, November 10, after a 5 1/2 week stay for Rosie's open heart surgery. Free at last, or so we thought. Being in a hospital has its advantages. One of the disadvantages is that you are constantly exposed to germs, and Rosemary caught something just as we were on our way out. She spiked a 102.5 fever Wednesday morning. Desperate to stay out of the hospital, I called the Nurse Practioners at the hospital to see if I could manage the temperature from home. She responded well to Ibuprofen that day, so we avoided taking her in. Thursday morning, however, she spiked a 102.3 fever again. So into the cardiology clinic we came.

Being that it is cold and flu season, there were no beds available anywhere in the hospital. They said we could go to the ER and wait, or go home and wait for a call. We decided to go home. No beds became available for Rosie by morning so we opted to go to the ER. She was breathing faster, looking bluer than usual and it was obvious that she needed care. So off we went, back to Children's National Medical Center in DC.

Luckily, it was early, no one was in the ER and we went straight to a room, straight onto oxygen and Rosie finally got some rest. Her oxygen saturation levels were in the 40s and 50s when we got there, it was obvious she was air hungry and couldn't fight whatever she had caught on her own. It has been a long haul, it's not over yet. I'm totally over it. I'm tired of Rosie having to fight, tired of being here in the hospital, simply tired of it all. But as any parent knows, you do what you must do, when you have to do it, and that's it. Still, I'm totally over it. Mother Therasa, send me some patience!

Recovery takes time. I'm learning that a new level of "get over yourself" is required every day.

One Week

It's Monday morning, October...26th. I had to double check on the computer because I have no idea what the days and dates are when I'm here in the hospital. Rosie had her 3rd open heart surgery on October 2nd. Since then, it has been a constant roller coaster for her. This last week has been eventful. After a series of days of Rosemary's oxygen stauration levels dropping and daily x-rays not really showing anything, the last of the x-rays revealed a developing pleural efussion, or fluid around the lungs. So last Monday they decided to place what are called, "Pigtails" in the right side of her chest. These drainage tubes can last anywhere from a few days to a few weeks or even months. On Tuesday, her morning x-ray showed a developing pleural effusion on her left side, so they placed a pigtail in her left chest, as well. On Wednesday, I was so sick and tired of the pokes and prodding that I asked for a PIC line (central line) to be placed into her chest through a vein in her left arm to forego anymore pain associated with blood draws and IVs. This would enable them to draw blood and administer IV meds and fluids as needed through one location. She had gone through 3 IVs in 5 days over the weekend, so she was done, and so was I.

These pigtails can sometimes become clogged or kinked, so they often need to be flushed or adjusted. Thursday evening revealed a kink in her right chest tube and a twist in her left, so the cardiovascular surgeon fellow came in to unkink the lines and eventually pull off 230cc from her right lung, and 170cc off of her left. Friday, more of the same. By Saturday, her pain was becoming hard to manage so they put her on scheduled doses of morphine, on top of the oxicodone and torodol she was getting. And last night, Sunday night, the nurses noticed the tubes were not draining as they should be. As they attempted to drain and pull off more fluid, the right chest tube broke away from the drainage port and the entire tube had to be pulled out of her chest. Doctors said that this happens all of the time, all over the world, it's just the nature of chest tubes. I'll be writing to the manufacturer later...once I've got nothing better to do.

So today, we are re-evaluating the need for another chest tube and the placement of a PCA, Patient Controlled Anesthesia. Rosie has seen so much pain medication over the last 2 years of her life that the normal doses of drugs do little to nothing to help her with the pain. Hence, the need for a little more than normal on the side of narcotics. I'll be meeting with the Pain Management Team today.

All of this to say, it has been one heck of a week. Just one of the three since we've been here. I can tell you this, I am the luckiest Mother alive. To have my baby girl being taken care of in a state of the art facility, to have my sister Leslie's family watching over my other two children, to have a loving partner who supports me, to feel the love all around me from two families that never stop believing in Rosie and in us...I am very lucky.

My cousin Kristen works in the ER downstairs. This morning, she brought me a load of gifts from my family who had gathered at my Aunt Jackie's house to celebrate a Steeler Sunday. The gift bags were hoisted onto an antibacterialized gurny, it looked ridiculously silly, I got a good laugh. It felt like Christmas morning. My sister, my cousins, my Aunts and Uncles, collaborated a host of Halloween gifts, costumes for Rosie, inspirational books, clean clothes, a beautifully hand made card from my Shea-signed by all-and food and more love than you can imagine, all put together so that I could feel a little bit of home while I'm here. After she left, I sat there and cried.

All of this insanity that comes with being here, I know it will end. One day, maybe in one more week, I'll remember this time and not feel anything but relief and the same love that I feel right now. Thank you, family. Thank you for bringing me home again.

Whatever it is that makes you feel at home...harness it. It's what you got!
Here's a musical place that takes me home too...(click on "Home")...
http://www.veltzmusic.com/Home_Page.php