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.