Friday, October 22, 2010

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.

Sunday, July 18, 2010

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.

Monday, May 10, 2010

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 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.

Tuesday, April 13, 2010

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.

Saturday, March 13, 2010

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.

Wednesday, March 10, 2010


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.

Monday, March 8, 2010

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.

Friday, January 15, 2010

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 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.