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.

Overdue Update...

It's hard to believe that nearly 2 years have gone by since my last post here. My sincerest apologies. We've been enjoying life, which is something I couldn't have even imagined being able to do at this time 4 years ago. The truth is, Rosemary has defied the odds and is living as full of a life as any other child her age.

Having HLHS does not define her, it has become her bridge to other people, and quite frankly from theirs to mine. Her life has inspired her family, friends, teachers and community to reach out to those suffering from heart disease and congenital heart defects. Last year, she was chosen as her school's "Heart Hero" for their Jump For Heart campaign through the American Heart Association. The pictures below are from 2013. Her school has been the #1 fundraiser for this event in our county, and one of the top 100 schools in the state of Maryland. Her school, alone, raised over $20,000 last year, something she was very proud of. Bringing awareness and raising funds for pediatric heart research is one of our goals as a family and this is part of our motivation to utilize Rosie's life to benefit others.

Rosemary and her PE teacher, Letty McNulty

Rosemary sits quietly as her PE teachers educate her classmates about her heart condition and that she is one of the many reasons the AHA raises money and awareness to promote healthier hearts.

Rosemary has been doing so well since her last surgery, so we decided to skip her annual heart catheterization last year. This decision was made partly because she wasn't showing any new signs of cardiac deterioration, and currently, the only thing left to do for her is to attempt the Fontan again or talk transplant. Her cardiologist and I were in agreement that because she was doing so well, we would revisit that discussion in a year. That year has passed, and at her 6 month follow up appointment last Wednesday, it was apparent that we needed to investigate exactly where she stands.

She had the usual routine, vitals, ECG, and an echo. During her ECG, I noticed that her heart rate was in the 40's and she usually sits in the mid 70's. I made a mental note and decided not to immediately worry but asked the nurse to let her doctor know. During the echo, I saw the same. Her heart rate fluctuated from the 40's back to the 70's. So her doc decided to put her on a halter monitor for 24 hours and get some labs done. He also mentioned that it would probably be a good idea to get her cathed again and once the results were back from all of the tests, to sit down with her surgeon, the cardiologist and Drew and I to discuss how to move forward.

......How to move forward.....

The realities of what this means for our family is something that I have been ignoring for the last 3 years while Rosie has been stable. I have distracted myself through nursing school, an accomplishment that is directly attributed to Rosemary's life. Having seen the amazing care that she received that kept her alive  was the internal catalyst that has led to a double inspiration to become an RN. It has been my goal since Rosie got out of the hospital. I knew it was something I could do and I wanted to do for her. 

Our family has regained a new sense of normal since March 2010. My other two children have been involved in school and sports and it's been wonderful to attend school events with Rosie in tow. We haven't had to do to much adjusting in our lives at all really, it's been smooth sailing. Auto pilot, if you will. It's been so nice watching her ride her bike up and down the street, each year riding a little further down the hill and she always makes it back up again.

As heart parents, we can't control much of anything with regards to our kids' hearts, they tell us what they need and when they need it. Aside from that, we're at the mercy of a seemingly nebulous free fall that will catapult us into any direction at any time, leaving us to constantly worry that the first sign of any illness or distress is a signal that there is something wrong with their heart. 

I choose to process her inevitabilities by intellectualizing the information that I can make sense of through my studies. Her numbers, her symptoms, symptom management. I mostly keep myself in a safe bubble of denial, which has worked for the most part. It's like wearing a pair of those horse blinders, I only see what's in front of me. It works until I hear of one of our own HLHS'ers suffering through the same struggles that Rosie has faced, and many times much more. It reminds me, daily, of how blessed I am to look into her eyes, to see her smile, run, play, laugh, smack her brother and sister, scream in anger...to see her live. 

Her continued quality of life is at the forefront of my desires for her. And I understand that even my best intentions will not be able to provide that for her forever. But while I can, I will. I have today. WE have today. 

God has a perfect way of revealing His timing. I just received an incredibly thorough report from all of Rosemary's specialists and teachers at her school. From Psych evals to every ED eval under the sun, she's gotten it and it will be reviewed on Tuesday of next week during her IEP meeting, two days before her catheterization. Looking at all of the information we will have, the absolute, most comprehensive information on how she is doing physically, mentally, socially and emotionally...we will have it all. We have time on our side right now as well, which makes going into a meeting with her surgeon feel...as prepared as possible. He's given us 4 extra years we didn't think we'd have. We're here, she's strong, and she's still fighting. In fact, I feel like she is the best she has ever been.

I expect that because she is bigger and stronger, that she will take to the Fontan again. I hope that her little lungs can handle the pressures. This was the surgery that caused her chronic pleural effusions and a 6 month hospital stay that nearly ended her life, again and again.

Her cardiologist mentioned the name of the doc who saw Rosie in January when she visited the ED at Children's, she is also the head of the new transplant department. I swallowed that with a side of denial, hoping that we won't have to visit that reality just yet. It is seemingly inevitable, but I want to give HER heart one more chance to keep her going. Knowing that someone else's child will have to pass for mine to live is an everyday reality that I cannot escape. It's not just that thought that makes me cringe at the idea. It's the reality that she will again have to succumb to such a deteriorating condition and endure such extreme pain and suffering in order to be pushed higher on the transplant list. It's a balancing act of keeping her here and keeping her comfortable.

We very well may get the report that everything is virtually the same and that we can continue to wait as we've been until something changes. I don't know. This is the part of being a CHD parent that I've gotten rather good at. Ninety percent of the time, I don't think about the inevitabilities because they're not urgent right now. I don't waste time and energy on things that I can't do anything about. Instead, I let my everyday family life blissfully consume me, I continue to forget about it while I can. 

We waste a lot of energy on the things we cannot change, even the struggles of yesterday. Doing that takes away from the energy we need to ENJOY today. Try to be a ray of sunshine for your loved ones, sick or not. 

I will update with more information when we have it. Until then, smile, laugh, love and make someone else's day better, because you can.

This was a long one. Thanks for reading.

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.

Get The G Outta Here!

Rosemary's 5th GJ tube popped out again today. I cannot, for the life of me, understand how it backed itself out...again. The balloons that are designed to keep these tubes in place are deflating, allowing the tube to slip out of her belly. Is anyone out there with a feeding tube kid having these GJ issues?

I was getting my hair cut today when I got the call from my daycare provider. I heard Rosie crying in the background, and Miss Susan trying to calm her down. She quickly explained what had happened and I then began to walk her through...fixing the problem. While she had her finger over Rosie's stoma, which was spewing yellow stomach bile and formula all over the two of them, I took her through a step by step process of cutting the 10 inch tube to be short enough to thread back into her belly so she could tape it down to keep it in place until I got there. This had to be done in order to keep the stoma open. Thank God I have the most patient, able and willing sitter. Not just anyone will, or could, watch a child with Rosemary's medical history.

Once I got Rose home, I deflated the tube the rest of the way, pushed it back down into her belly, re-inflated the balloon and now I'm waiting for my cousin, an ER Nurse at Children's, to get home with a replacement G tube to reinsert. I don't know why I never got a replacement. Even though she had a GJ tube, I should have had a G tube for these types of emergencies. Lesson learned.

I don't know if the cause of its malfunction is within the tube's balloon mechanism itself, Rosemary's activity level, or her displeasure of the thing that makes her attempt to yank it out that causes it to deflate. But she has now lost 2 tubes in the last 8 days. This kid has already gone through so much radiation during her hospitalizations, and having a GJ replaced means going into Fluoroscopy and being exposed to large amounts of radiation again. It's like a video x-ray. They have to take live x-rays of her belly while they are maneuvering the tubes and wires in order to get the correct placement. In Rosie's case, they have to spend a lot of time getting it past her duodenum because it twists and turns like crazy and they have a hard time looping it up and over that section of her intestines. The tube is about 8-10 inches long. They have to feed a series of many feet of wires into her gut first and then once it is in the correct place, they slip the GJ tube over the wire, down into her belly and through her intestines for placement. Once it has reached its destination, they inflate a balloon that keeps it in its "permanent" spot. All the while she is awake for this whole process. No sedation. Lovely. It's possible.

I just want Rosie to eat. Last week's GI visit went well, it rendered more ideas on what foods to try out. We are decreasing her feeds so that she gets hungry on her own. I seriously do not want her to have to rely on the tube to eat. She is attempting more and more foods. Todays favorite, Cheeze Its. She isn't gaining weight from food, so no matter what, we have to have a feeding tube option right now. Because the tube popped out so late in the afternoon on a Friday, Fluoroscopy could not get her in today. We will have to just pop a G tube in and hope that her belly tolerates the feeds this weekend. I'm actually excited to see if I can get her to eat more food! Hydration and nutrition are always concerns with cardiac kids, but hey, something's gotta give...I want that GJ outta here!

Here's to an interesting weekend. Cross your fingers folks. And no, I did not finish the haircut. Whatever. I like buns. :)

Now off to drop off my 12 year old to her first school dance. After all, I am still a Mother of three.

Destination Autopilot

July 12, 2010

Four months ago, I couldn't imagine what life would be like outside of the hospital. Rosemary had her Fontan procedure on October 2, 2009 and her heart and body rejected it. She lived with pleural effusions for 6 months as we recycled ourselves in and out of Children's Hospital in DC. We were living day to day, sometimes moment to moment. I couldn't look one day down the road. At one point, I was looking transplantation or Hospice right in the face.

I'm happy to report that today marks 4 months since her 4th open heart surgery and Rosie is doing amazing! She is certainly a miracle. I have renewed faith in life, especially in her. After having pleural effusions for as long as she did, I thought it possible that she would be taking Lasix for the rest of her life. Fluid balance is a tricky thing because it's different for each kid. Well, today marks one full week that she has been completely off of her Lasix, and no complications. At her cardiology check up last week, her doctor promoted her to visit once every 3 months! Super exciting for us. This means Rosemary is doing spectacular.

I wanted to blog today because I remember how frustrating and different life was just a few short months ago. I pushed away my sadness by day, and sobbed and prayed by night. I was scared, I didn't know what else to do for my daughter, and now we're here. Rosemary's story is one that should offer hope to anyone who faces uncertainty in their life. Sustaining hope can seem difficult in the midst of prolonged hospitalizations, but if it's there, I believe it's the best medicine for everyone involved, especially your child.

Rosie looks great and she's thoroughly enjoying her life. I will never stop being amazed at how resilient she is. She's been going to the beach, traveling, and most importantly, living at home. Of all the destinations life has to offer, I prefer autopilot at home, for now.

I just want to add how grateful I am for everyone who has been involved in Rosemary's life. Family, friends, doctors, nurses, therapists, pray-ers. I couldn't have pushed forward as I did without you, and Rosemary being here is our way of saying Thank You. I will never forget any of you or your persistence in loving and caring for her. There isn't a day that goes by that I don't think about all of you and how full and blessed my life really is. It's been quite a ride. Thanks for arriving here with us.

Our Building Blocks

Being home has provided Rosemary with the absolute best medicine, freedom. She is running and playing and acting like a toddler again. Life has definitely been good to us. We've been given a new opportunity at life with Rosie and we have so many people to thank for that.

I want to take this oppotunity to say thank you, to every single person who has thought of us, prayed the life back into Rosie, provided food, a smile, gifts, visited us at the hospital, given me time out of the hospital, taken care of my other chidlren, given me a ride, a lunch, occassional libations, texts, emails, Facebook messages and the constant streaming of positive interaction that kept my head held high when all I wanted to do was cry. Everything that each one of you has done has contributed to my peace of mind when all I could do was concentrate on Rosie's care. There is no way to try to explain the solace that I found in my heart and the strength that you gave my soul to push me through and passed the pain and realities of where we were. All of the wonderful outcomes that we enjoy right now are the direct result of your positivity and prayer.

To the staff at Children's National Medical Center in DC, where do I begin? I know it's your job, but I also know that Rosie gave many of you a run for your money. From her surgeon, Dr. Jonas, to her Cardiologist, Dr. Harahsheh, her GI Team, and the amazing CICU and HKU Nurses and staff, YOU ARE SIMPLY AMAZING! Thank you for standing beside me, knowing where we were, holding on to Rosie and I, and giving me the knowledge and strength that I needed to endure all that we did in the 6 months that we were there. You are the most incredible souls to me, to witness what you do everyday, to return to Rosie's room again and again when you had to put her through the tough stuff, and still be able put those optimisticlly beautiful smiles on your faces...you are my heroes.

To my family, the life that I have led has brought me closer to all of you. When you were not physically here, you were always spiritually here. There was not a moment when I did not feel your presence and love. The amount of support that I have is absolutely the most beautiful gift in my life. The strength that I had and have now is a direct result of your love and support for me and my children. The memory of this chapter in my life will never be forgotten, not because of the difficulties, but because of the triumphs that I share with all of you. The biggest one of all, Rosemary being here with us. I look forward to sharing many more tears of joy, I love you.

And to my sister, OMG, where do I freaking begin? I would not, by any stretch of anyone's imagination, be where I am without you and Travis. Thank you for taking us in, for loving my children like they were your own, for the constant care (and we know how constant it is) that it takes to be a mulit-family household, but most of all, thank you for putting up with my insanity, because let's face it, we all know from observation that I don't need a clinical diagnosis! Travis only signed up for one Irvin, and now he has to put up with two of us! Poor guy. You have been my silent strength, voice of reason and constant support. I am honored to call you my sister. I love you.

You all have been the building blocks in my life. I am eternally grateful for your lives, your wisdom, and love. Because of that, we go on.

The Life Semester

Well...she did it. Rosemary graduated to HOME! It seriously felt like her college graduation when we left the hospital the night of March 30, 2010. Since we've been home, she has remet so many of her physical milestones and is back to herself mentally and emotionally, which are the biggest reasons for her daily triumphs.

The first day that we were home, it was absolutely gorgeous. The sun was shining, a warm breeze met our faces as we stepped into Spring and began our new adventure outside the walls of the hospital. I almost felt like I needed a debriefing from hospital life back to real life. Before our discharge, Rosie had only been walking again for a few days. So when she first stepped onto a sidewalk, I could see her brain trying to figure out how to scale the cracks in the sidewalk. Her brain knew what it wanted to do, but to coordinate her body to respond took some retraining and relearning patience with herself. She was starring at it, I could see her thinking, "Come on! I know how to do this, why isn't it working?" It took her the first day to get comfortable stepping on the cracks and regaining her balance. But of course, her bountiful determination helped her defeat the sidewalk cracks and the numerous physical challenges she would face in the days ahead.

By her fourth day at home, she began climbing up the ladder of the playhouse out back and sliding down the slide. I was just as excited as she was. I wanted to let her do whatever she wanted, no matter how freaked out I was about her fragile little body scaling physical obstacles. She wasn't strong enough to wear her feeding pump back pack, but we figured out a way to make it happen. As she climbed the ladder and made it to the top, I would throw her back pack over toward the slide, run around the playhouse to meet her on the other side, grab her bag and hold her hand as she flew down the slide, giggling with joyful thrills. The look on her face was priceless. What an amazing experience to have the positive contrast on this side of life again.

Everyday is filled with new revelations for her and for our family. She improves in strength and agility, she's dancing and laughing and almost running which is the cutest thing to watch. I didn't think about any of these joys while we were in the hospital because when she was sick, it was about getting her through each day with as much comfort as possible. Now it's about getting her through each day with as much joy, happiness and new experiences to enhance her life. These were the things I couldn't think about then, but are the joys of my life now.

There are simply no words to describe the shift in my mentality as a Mother in the hospital, and a Mother at home. I have found now, that whether I'm here at the house, at the doctor's office or the hospital, my life is about making Rosie's life, and the lives of my other children the absolute best it can possibly be. It has challenged me to think about what I need to do with my own life so that I can be the best Mom I can be.

The last several months have taught me and my family quite a bit about ourselves. We've all graduated in some ways, but I think Rosie's diploma has a few more credits. Congratulations Rose. We love you.

Beautiful Purpose

This week has changed my life forever, it's the tip of my new iceberg. As I sit here in the CICU thinking about all that had to be processed from Monday until now, I understand a little more what my life's purpose is and I am eternally grateful.

This last month, Rosie's deteriorating condition forced me to accept that a lot things were out of my control. As a parent of a child who is very sick, the best thing that you can give your child is your love. All I wanted to do was figure out why her heart, lungs and gut weren't working. I wanted answers from the doctors. I wanted the best nursing care possible. I wanted Rosemary to get better so I could just take her home and get her healthy and happy.

As the weeks went on, she got worse. There was a sense of frustration from just about everyone that saw Rosie. We all wanted to help her, but no one could find the right recipe for her recovery.

All I know is that within six days, I went from longing for answers and sobbing at the reality that I just might lose the most precious gift I've ever had to accepting God's will. I simply gave it up to big guy upstairs. One way or the other, He was gonna fix my kid. Either another procedure would present itself, or He would take her home. I finally said, "I can't stand this for her anymore, you need to do something."

Within 48 hours, Rosemary's surgeon offered us something that we didn't think we had, an option. It was the window we had prayed for. Just like a breeze that fills a room with fresh air, yesterday's surgery filled every heart that loves her with a fresh sense of hope and faith.

On Monday, I was given the news that a heart transplant was the most viable option for Rosie. Tonight, 24 hours after her 4th major open heart surgery, she sleeps comfortably, breathing on her own, and looking better today than she did the day before she had her repair. I can't believe it, yet I can.

Rosie is a fighter. She's a miracle of strength. She is proof that having faith in something and accepting life for exactly what it is and where you are will bring the beauty and bounty of love to your life. I must have done something right for this gift to be here with me tonight. I accept her purpose in my life and that my life, for sure, has a beautiful purpose for her.

Brakes...Gas...Brakes..Gas...

I have a new surge of hope today because we have received some news that we DO have options for Rosie that DO NOT include heart transplantation at this point. We can breathe again.

Her surgeon here in DC met with me today and explained that he didn't feel that she would do well with a transplant right now and that reverting her back to her Hemi-Fontan may give her the relief and benefits that she needs. He also explained that at some point down the road, it is still possible that we may have to face the decision of transplantation and that no matter what we decide, there is still no guarantee that it will fix her problem. I am still hopeful.

Yesterday we had sent a packet of 9 discs and about 50 pages of info back to New York Presbyterian Children's Hospital where she had her first 2 surgeries. The intent was to get their opinion on whether or not she was a candidate for a transplant. To my joyous surprise, her cardiologist there said that no one on their team thought she needed a transplant at this point and that they thought they could help Rosie. They would like to try to do the trim back of the tissue in her atrial septum to reduce the pressure gradient that they feel has been causing her Fontan failure and pleural effusions.

We now have two solid surgical options that do not include transplant. We are waiting for the two surgeons from DC and NY to confer on what they think would ultimately be the best choice for Rosie. I have a gut feeling we will be going back to NY. My hope is that we can do whatever repair is necessary without relocating, but I am willing to do whatever it takes. This also means that we would be transported to NY as early as Sunday, which Columbia Presby and DC said they would help set up ASAP.

I would be relocating myself and Rosie to NY for at least 4 months. I have 2 other children to take care of and this makes it very hard for me and my family. The stress of not having them near me or being able to see them as often will be the worst part. Deciding to go to New York will include my sister and parents carrying much of this weight because they are currently loving and caring for my other two children and would need to continue to do so until we return. I am so blessed to have this option in the first place, to be able to have peace of mind about making this decision knowing that my children will have my sister, brother-in-law and parents to take the best care of them.

So here we are, about to embark on yet another set of decisions for Rosie. We are trying to give her a better option than what she has now with the best possibility for a better quality of life.

It's changing every day. Stay with us. Stay tuned.

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.

Delerious. On 60. Speechless.

These are 2 late night blogs that I did not get to post for various reasons. The posting date should have originally been January 15th and then February 5th, however, here they are...

This ever evolving roller coaster with Rosemary has left me feeling incredibly fortunate to have her at my side and at the same time, ridiculous for ever complaining about anything that has gone wrong.

The next paragraph begins the initial start of this blog that was written the night of January 15th upon our last admission. I had gone into the family lounge to use the computer while Rosie was sleeping. I stopped and saved it after the nurse alerted me that Rosie had woken up and was upset that I wasn't there. So today, I am rereading it for the first time and reflecting on how quickly someone else's circumstances can make your own difficult experiences seem quite small.

January 15, 2010

I know I can play off that I'm not insane at this point. The truth of the matter is that last night after getting home from a cardiology check up that allowed us to come home, I brought back the news that we would be admitted again today because of worsening pleural effusions, again, for the 5th time...and lost it. This experience has played with my emotions and has left me exhausted and understanding that control over most things in life is simply a complete illusion.

As I stood in my closet staring at my things, wondering what to throw into my "already packed for the hospital suitcase" that sits at the foot of my bed, I just started crying. The complete disappointment that surrounds having to put your kid through yet another hospital stay and the endless rounds of IV's, xrays, sleepless nights, unknown procedures and the gammet of what it means to come back to the hospital, has got me...well, exhausted. I don't unpack anymore because I never know when I will have to come back, planned or not. I actually unpacked twice, only to have to hurry and try to pack what I could while gathering Rosie's oxygen and necessary supplies just to get her back here to the hospital safely. I came in feeling completely unprepared.

I don't even know what to say anymore. I hate pleural effusions. Period. I have been trying to keep all of my friends and family aprise to Rosie's progress. It's exhausting to hear myself speak sometimes. I'm on my own merry-go-round with dealing with these hospitalizations, trying to be the strong Mother that she needs me to be, a Mother to my other two children who miss me, THANK GOD! I just feel like an emotional drainpipe sometimes.

All of the updates, good or bad, make me feel like I'm playing with the emotions of everyone who follows Rosie's progress. We're home, we're in the hospital, we're home, we're in the hospital. I can't imagine how Rosie feels, where her little spirit has had to go and what she has had to submit herself to through all of this. She hates the hospital. I just want to rescue her, I feel so helpless most of the time. I can barely comfort her anymore.

This is where I stand. Under my invisible "Harry Potter" cloak, I'm just hiding from what is really happening to keep my nose above water here. I can't stand this. But somewhere deep in there, I know that this is giving me strength and preparing me for a greater purpose for my life, and for Rosie's life. These blogs are intended to help me vent, and to help other parents and families understand my experience with having a child with HLHS. I'm clearly frustrated. But I'm still very hopeful that this will have a happy ending. I've prayed for the tiniest angels with the biggest wings to get in there and dry up Rosie's lungs. Time will tell, and I've got to keep my patience in check. Living in the hospital is getting old, and heavy...my thighs are showing signs of hanging on to the late night carbohydrates, what we like to call "The Emergemenu" that are on hand and readily available to soothe my displeasure about this experience. And so it goes.

February 5, 2010

After reading that blog entry above and reflecting on what had gone on while I was in the hospital during that time, I have, yet again, upgraded my mental luck-ometer knowing what I have with Rosie. I have today.

On that very day, January 15, 2010, a Mother who had been across the hall from us in the CICU had just lost her baby back in Mississippi to his battle with aortic stenosis. I had met her while she was here at Children's in DC awaiting a heart transplant for her newborn son. I had no idea because we had just gotten back in the hospital and I hadn't checked my Facebook updates in weeks. When I learned of it and reread the pevious post, I felt like I had so much more to learn andto be humbled by. Just two days later, another friend of mine here at the hospital lost her 10 month old son who was battling complications of Down's Syndrome and HLHS.

There is no way to describe the gravity of that place. I have the deepest respect for the mothers, fathers and families of children who have passed. Their hearts and souls have had to go to a place that every human being fears. It's not right, it's not fair. Somewhere out there, is a reason for all of it.

I look back on how upset and frustrated I was then, and still am in many ways. Upon finding out about these 2 babies, I felt ridiculous for ever being frustrated over Rosie's complications.

The reason that I decided to post and add to this blog is to try to further express how quickly circumstances can change your emotions, even when you think you have it all figured out. Everything is relative. Everytime I say I'm thankful that we're not in the CICU, that I know things could be worse and I feel ridiculous for being upset, so many people remind me that it is okay to be upset with where we are because it is hard. Rosemary has been here since October 2, 2009, with little time at home. I'm tired of this for her. I just want her to feel good again and regain her quality of life.

I'm just left speechless tonight. Thankful, and speechless.

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

A Walk in Their Park...

I looked out the window for a second while reading to Rosie and Lee and making puppets kiss their noses, when I realized just how peaceful we are right now.  I felt lucky again today.  It was really nice.

I've been up and down over the last few weeks just mentally preparing for the next phase of Rosemary's care and all that it entails for our family.  We're 3 days away from her next heart catheterization which will help us determine how long we have until the next surgery.  Yesterday, I had a unique opportunity to briefly reach out to another family with an incredible story who has just gone through one of the most difficult and challenging times in their lives.

While at the hospital taking care of Rosemary's pre-cath blood work, I ran into a team of her cardiologists while in the lobby.  I went on my way but when I returned an hour later, I found that they were all standing on a stage behind a young girl, her family and a man in a yellow T-shirt. After a few seconds, I realized the man in the yellow T-shirt was Yankee player, Brett Gardner.  It didn't take another minute to realize that the young girl was his lucky charm from last month's game which ended in one of the Yankee's most exciting inside the park home runs ever. Drew and I watch every game, and when we heard the story about Alyssa Esposito 's heart and the bracelet, we were both very moved.  Yesterday, I had a chance to reencounter the joy of knowing that she had gotten her heart and a chance for a better quality of life.  Alyssa received her heart transplant at the same hospital where Rosie receives her care, and from much of the same Cardiology Team.  They're amazing people and extraordinary professionals.

To actually see her and doing so well just 4 weeks after a heart transplant was immensely inspiring and I found myself inside a new sense of hope.  I felt honored to have the opportunity to speak briefly with her Mother.  Knowing what it 's like to be inside of the vulnerability surrounding heart surgeries, she had an amazing sense of peace in her eyes and I presume those eyes have seen much more than I have seen.  She conveyed her faith in the hospital, the doctors and staff and Alyssa's great strength and perseverance.  Whether she knew it or not, she gave me the greatest gift, a heightened sense of hope.  She's been on her journey with Alyssa for 18 years.  I barely have 2 years under my belt with Rosie.  It was perfect timing for me.  It felt like a little booster shot for this next surgery.  

I was gratefully humbled and given a new sense of encouragement and air to our journey.  Thank you to the Esposito Family for sharing your lives and your story.  You just filled up my gas tank for this ride.

The Horse

Some things never change.  No matter how many times you've been to the hospital or the emergency room, the feeling of having to be there never changes.  In my head, I'm just standing there shaking my head...in reality, I'm just standing there shaking my head.

I usually get a little overwhelmed at the initial realization that I have to go and why I'm going. My little Rosie basically has half of a heart and when I don't really know what's going on with her, I initially freak out a little.  I wasted about 3 minutes rumbling around trying to get a bag packed for both of us, not knowing if I should even spend the time to pack a bag, but really knowing that I should because you just never know if its one night or one week.  Once she started vomiting again, I got my ass in gear and both of us out the door.

I always think I'm going to be a rock throughout the whole thing and then I break down. Whether it be on the way there, anticipating what I will find out or when I actually get to the ER and see that there are 50 sick kids wearing masks because they might have the swine flu  and I realize that I can't protect her from that either. There's only so much worry that's worth worrying about.

This little trip reminded me of how fragile she still is and how much control over this situation I really don't have.  At some point over the last 2 years, I've learned how to make peace with it. I've come to realize that my energy is better spent making her smile or chasing her endlessly around the house.  All I can do is love my little girl and do my best to make the right decisions for her.  You do what you can, and take care of business when you have to.  Rosie is really the one who takes care of business on these trips.  Of course, she puts me to shame!

You can lose yourself in the seemingly endless what ifs, but in the end, just get yourself back up on the horse, and keep riding.  

Love IS all you need.  Saddle up.

Ground Control to Major Mom

Time to prepare for Surgery #3.  Early September is the target.  You may be asking yourself, "Why is it time to prepare if it's 7 months away?"  My answer, it's all mental prep.  I can't do it at all at once.  I'm slowly easing into this one.  And yes, it will take me 7 months.  

For the majority of the time since Rosemary was born, it's been a challenge to not think about the big surgeries and procedures.  The ER visits and all of the hospital stays that came up out of the blue were enough to throw a permanent set of blinders on that allowed us not to think, see or worry about anything unless it was the "day of" or right in front of us.

We visited Rosie's Cardiologist today, she gave me the most uplifting report on Rosie's heart. Her function has improved tremendously, which has been significantly down since we left the hospital in September 2007.  After Rosie's Norwood, she went into severe heart failure and we had two back to back admissions that kept us at the hospital for a month and a half.  The good news is that she is growing cognitively, physically and emotionally.  To get a positive report after the year we've had was just wonderful.

The hard part is that we now have to face the realities of preparing for surgery again.  Which, in my opinion, never gets any easier.  After her second surgery, I was so used to being at the hospital that I actually felt safer during the surgery and, of course, after it was over.  I thought I was mentally stronger and more capable of not getting emotional over the thought of surgery #3, the Fontan.  I was wrong.

I almost began crying today when I heard the words from her Cardiologist, "We need to start thinking about her next surgery and I want to cath her sometime in June."  

What?  In that very moment, my trauma blinders were lifted and the reality that we still have one surgery left was, all of the sudden, upon my head and heart again.  Of course I knew the Fontan was necessary.  I guess I just thought that after almost a year of not HAVING to be at the hospital or think about surgeries, that somehow we had escaped the realm of HLHS.  We've been on cruise control for so long, exactly one year to the date on Sunday.  Earlier this week, I was planning our one year post-Glenn party for Rosie, so the reality of hearing this news, which is still positive, just caught me off guard.

I have every reason to believe that she will recover from the Fontan just as well as she did from her first two open heart surgeries.  Just as her little body prepares to go through it again, we, too, must prepare our hearts and minds to be her strength and hope.

FYI: She was AWESOME today for every test she had to go through.  Bloodwork, EKG, SAT's, and an Echo.  Rosie, YOU ROCK SWEETIE!

Pissed for 10 Seconds: On Remembering the Difficult Days

Recently, I was reminded of the unique position of where I've been over the last 19 months. That's just what happens when you and your family have gone through one of these survival periods.

I havn't had too many days in the last few years where I've actually been upset enough to get pissed. But the other day I saw a picture of Rosemary when she was about 8 months old, and I got a rush of adrenaline in the pit of my stomach. In that instant, I became incredibly pissed. I felt like the necessary insanity of that time had robbed me of the normalcy that I had craved for the first year of her life. I just don't remember much detail surrounding those months, and I can't recall having too many moments of not having to worry about Rosemary's life. It was so constant that everything else just kind of flew by in my rear view mirror. I felt like I missed having my baby, I blinked and now she's 19 months old. I know that particular part of having kids is normal, they all grow up too fast. But this has been a whirlwind.

I was so wedged between keeping her alive and trying to predict if each incident of vomiting, fever, SATs dropping or crying was going to be the next straw that broke the camel's back sending us rushing to the ER again. I just kept blindly walking on the treadmill of life. I was so fearful for her life from day to day, I had a very difficult time trying to stop and enjoy it. Of course this challenge has given our family an indescribable amount of wisdom, patience and positive perspective, but it was the most difficult time I've ever lived through. I don't know how, but we're probably some of the happiest people on the planet.

New moms don't get any sleep to begin with. When you throw placing NG tubes, insuflons, feeder bags and all of the medical tubing, tape and monitors in there...you kind of forget who you were before all of this began. You instantly jump into the role of surviving. Rosie and I have always had a crazy and beautiful understanding that living sometimes means that Mommy has to reluctantly inflict some discomfort...only to survive. She's been so forgiving. I don't know anyone as forgiving as her. I still have to place a feeding tube into her G-tube (button) 3 times a day, but it's better than the memories of placing an NG tube up her nose. Even at those times, her little eyes would look up at me with that look of "...I know why, but damnit Mommy!" She would sigh when it was over and then put her head on my shoulder. I probably cried more than she did. She's the strongest little kid. It's been almost a year since her second open-heart surgery, it was Leap Year and it was a blessing.

Rosemary is doing awesome. And finally, so am I. I'm here, typing, and not crying over not getting any sleep or having to sleep in the ER again. We're not there. We're here, and I'm grateful. I was only pissed for about a total of 10 seconds that day...and then Rosie literally knocked on my door, I opened it and saw those big, beautiful brown eyes staring up at me, and she smiled.

That pissed feeling in my gut went away in an instant.

If I have any advice or sentiments for anyone going through this right now, know that the hard times will become memories. Just do what you need to do for today, it's hard, but you will find your peace.

The Life Raft of Love: A Sibling's Perspective

I sat down last night to talk to my 10 year-old daughter, Shea, about her perspective on our journey with Rosemary. There have been so many times when emergencies have come up and we’ve had to leave either in an ambulance or in the van to get Rosemary to the ER. And Shea was left with one of our God sent neighbor’s, who would then wait with her for our family to arrive to take over the care for her and Lee until Drew could get home from the hospital.

So here are some of the things she had to say about Rosemary…

Shea regarding the first 911 incident:

“For a second, I felt like I didn’t know what was going on. All of the sudden, I see my neighbors and police in my house, and they were checking to see if my sister was all right. Is she okay, am I going to be okay, and where is she going to go? Then I saw my Mom crying, and I cried. I knew something ‘not so great’ was happening. I didn’t see my Mom for a week at a time, and that’s how it was for a while.”

Shea’s response to how it is now:

“I’m excited that I still have a baby sister looking at me, smiling, and shaking the baby gate when I get home from school. I also want to say that it’s my pleasure to watch her everyday when Mom needs to cook or go on her website or clean. Rosemary is finally playing and talking and able to run around with us. It’s so much more fun now!”

Having a sick baby means adjustment for everyone. Each member of our family has had to rearrange their building blocks. Staying in touch with every family member's feelings and needs is vital to surviving these times. We have a sturdy foundation so rebuilding has had less of a traumatic impact on us. We’ve really dealt with the last year and a half one day at a time and in real time. I still think to myself, “When did I have Rosemary?” I feel like I blinked, and here we are. Nevertheless, change is constant and being flexible and having the ability to flow with the times has made all the difference in keeping our heads above water, and love has been the constant life saver.