Dr Starnes, cardio surgeon, met Reuben and within minutes, the date, this Thursday was set for major heart bypass surgery. The risks are obvious and moderate and frightening and yet watching Reuben search for a basic necessity such as breath is just too much. All his energy is expended on breathing so he's unable to put on weight and is back to his weight of 5 weeks ago. On arrival today, we knew he had to be re-intubated. We celebrated Friday's extubation because that's what it's like with Charge syndrome. You celebrate every positive step as a victory, knowing the next enormous challenge lies only moments away. We know each blow hits us like a tsunami and yet like Reuben, we just have to get back up again. Dad says he's like Rocky Bilboa. We celebrate every day of Reuben's life. The sweetness of his face makes my heart ache. I look at him and he's like a mirror image of me.
In summary, the heart bypass will correct the following:
- Ventricular Septal Defect (large hole between left and right sides of heart)
- Pulminary Stenosis (narrowing to lung)
- Patent Ductus Arteriosis (blood vessel that failed to close after birth)
- Coartation of Aorta (narrowing in aortic valve)
We knew this date would arrive one day. On Saturday 18th August, Reuben will be 1 year old from the day he was conceived.
We ask more than ever now from the bottom of our hearts for all your prayers and thoughts for our beautiful boy.
Catherine, Jason & Reuben
In summary, the heart bypass will correct the following:
- Ventricular Septal Defect (large hole between left and right sides of heart)
- Pulminary Stenosis (narrowing to lung)
- Patent Ductus Arteriosis (blood vessel that failed to close after birth)
- Coartation of Aorta (narrowing in aortic valve)
We knew this date would arrive one day. On Saturday 18th August, Reuben will be 1 year old from the day he was conceived.
We ask more than ever now from the bottom of our hearts for all your prayers and thoughts for our beautiful boy.
Catherine, Jason & Reuben
PS: Yes, the surgeon who was purpoted to not want to treat Reuben. We cleared that up very early on. He was badly misquoted and it did us all a great disservice. He knows we know the risks. He knows we know the challenges ahead in terms of growth and development and we were able to quote about the finest examples against all advertisity from direct experience at the Charge conference. He was given a poor picture of Reuben's cognitive abilities, sensory loss and medical complexity and changed his mind completely upon seeing Reuben.
18 comments:
Oh Catherine, it's been said before, but you really are on such a rollercoaster ride, aren't you? Sorry to hear that Reuben had to have the tube put back in... but at least you got to celebrate his victory on Friday... and your boy is so obviously trying his best to move forward. How very frightening Friday's operation sounds - I can't imagine what you must be feeling. Is this the same cardio surgeon who supposedly wouldn't treat Reuben before? If so, then glad to hear that wasn't true. Really, really hope all goes well on Friday... will be sending you all as much positive energy as I can! Much love - thinking of you often, Polly
Sorry, meant to say Thursday about the operation. P
Thank you for the update! I will definitely be thinking of you all this week...it is incredibly scary but a desperately needed procedure.
Max was a COMPLETELY different kiddo after heart surgery...it's amazing how much better they are when they can actually breathe!
So I am actually very excited for your family and feel incredibly optimistic about the amazing, wonderful changes ahead for Reuben.
Much love and prayers,
Amy and Maxwell
We and all our family and friends, will be praying for little Rocky, sorry, reuben and for his loving parents on Thursday. We will be there for you in spirit if not in person. You are never out of our thoughts. May God bless and support you and carry you safely on the journey ahead.
good luck
My daughter had am ASD and a PDA and after her heart was fix it was all up from there, she got more energy because her heart was not working so hard.
I am glad to hear steps are starting to move forward.
I will keep Reuben in my thoughts and prayers.
God Bless,
Crystal and Eva
Amid your fears for Thursdays operation, we must remember that the surgeon is up there with the very best in the world and like you said, it is now evident that Reuben really needs this operation to move forward.
Therefore, we must believe and be positive that Thursdays' operation will actually be an enormous turning point for Reuben. You are all in our thoughts and hearts and we will await Thursday with both excitement and anxiousness.
All the luck and love in the world
Erica
Oh Catherine,
The rollercoaster effect has a life of it's own doesn't it. I remember the weeks of debate over Keith's heart repair - whether he was strong enough, not strong enough, big enough, not big enough, whether the benefits would outweight the risks and how much the benefits could ameliorate his current challenges. All this while his health was moving in and out of critical to stable. That part of the journey alone was devastating. I remember sitting and waiting during the heart surgery, waiting for I wasn't sure what, feeling every bit as tired and worn as Keith, my hopes for him and my hopes for myself tied together.
The differences in him post surgery were amazing, and he only had the PDA. I am not sure why the benefits were so undersold in our case - perhaps results aren't predictable, perhaps everyone does the Bill Clinton thing and lowers our expectations.
So from our experience, while deeply aware that surgery is Thursday and the wait is unbearable and measured in seconds, I am also strongly optimistic and expectant for the increased capacity for growth and presences Reuben will benefit.
Our hearts are with you. Do not hesitate to let us know how we may support you through this.
with great love,
yuka
Disappointed... but certainly not deflated. As you've learned from so many of us who have "been there," the heart surgeries are so often a monumental turning point in the growth and development of our little ones. Terrifying and disappointing as it is, it's much needed and I am optimistic that this is "just what the doctor ordered."
The constant ups and downs are exhausting... I remember all too well. May you and Jason find strength in all the thoughts and prayers that surround you - - and may you find strength in each other and the obvious deep love you share that has brought you two to this point.
As Erica posted - - clearly little Reuben needs his heart repaired to get past this battle with breathing and growing. The same was true for Gracie - - she had stopped gaining weight and was exhausted all the time. Within days of her first surgery (dual ASD repair, mitral valve repair) we could see the weight coming back on, she had energy again and she wasn't expending all of her energy to try and pump oxygen through her body. I believe in my heart that Thursday's repairs will be a turning point for the better for Reuben. :-)
Much love, hope and peace being sent your way!
Kristi, John, Gracie and Preston
I'm sorry to hear that Reuben had to be reintubated, but at least you know he will be able to save his energy up for recovery from heart surgery. Your family will be in our thoughts and prayers. Although we personally did not experience heart surgery, I have "met" so many kiddos through the list that is has made such a tremendous difference. The before and after is amazing.
Hugs,
Sarah, Jeremy, and Evan
Hi Catherine,
Reuben looks great - what a fighter! And you and Jason are just amazing. My thoughts and prayers are with you for tomorrow.
Love, hugs and best wishes,
Jac x x x
Sounds like Reuben is teaching the surgeon a thing or two about CHARGE:)
I know it's a step back but from a mom having two(yes two) CHARGErs who both went through the re-intubation process, it's sometimes easier than watching them struggle so.
Have they tried Heliox? Sorry, I'm sure they have, I just want to make sure your sweetie is getting all the tricks they have in their bag(it's one that worked wonders for Tate after his last open heart).
We will keep all of you, especially precious Reuben, in our prayers for surgery and recovery.
God Bless,
Corrie Young
Catherine, my wife sent me your blog and Amy's blog (mighty max's mommy) today and I just had to post a comment. We too have been down the CHARGE road, over six years now, with our daughter Jillyan.
When Jillyan was born, the teaching hospital she was born in didn't have a clue what to do, they couldn't clear an airway through the sinus passages and had no idea what to do, so while they were stitching up my wife from her emergency C-Section they transported Jillyan by LifeFlight to CMC, a wonderful hospital with a huge NICU that had lots of experience with CHARGE babies. First surgery at three days old for bilateral choanal atresia. Hey, I've got a 24 year old healthy son, a 10 year old extremely healthy gymnast daughter, and the worst we'd ever been through was a bad flu. What did we do to deserve this? Well that thought lasted about 30 minutes, until my wife said, coming out of anesthesia, "honey, I have to quit my career to take care of our new baby, so let's not be worried about why she's got this thing going on". Just another reason that I love my wife beyond compare - she's my hero, my guiding light, and my rock in the middle of the storm, keeping me anchored to reality and keeping our loving family happy and healthy (well, as healthy as a CHARGE family can be).
And that is exactly what you have - a CHARGE family. Parents who have never experienced this might be able to guess at what you're going through, but if they've never had the joy of loving and caring for a CHARGE baby it's very hard for them to really understand what that roller coaster ride is.
At 20 days old, our heart surgeon came to us and said that Jillyan will likely make it through the night, but might not last another day unless he goes in right away. They wanted to wait for a year to do some heart repair, but Jillyan started going into congestive heart failure, again something I had to run to the internet to look up. At the time my wife was dropping off the older daughter and going to the hospital about 8 in the morning, then going home at 5 when I came to the hospital. I remember clearly around 9:30 that night having to leave the hospital in tears, as Jillyans arms and legs were turning blue, and her lungs were filling up with fluid. One loving soul, a nurse, stayed up with Jillyan all night patting her back while holding her upright so that she could make it to morning when we could get her in for surgery.
Surgery went well the next morning and now Jillyan has been through several surgeries to clear her sinus airway, two heart surgeries (second one for subaortic stenosis about 1.5 years ago), glaucoma surgery, and all the other associated tests and such that all CHARGE families go through.
So, the moral of this story (If I could but be not so long-winded), is that I'm sure Reuben will come through this with flying colors, and that in reading your blog and the comments, it's obvious that you have a loving and caring extended family to wish you well, with lots of prayers for little Reuben Jack.
Soon as we get Jillyan's blog up, I'll come back and post the location for you. For now, our thoughts, hearts and prayers are with you and your family. You can see from your pictures that theres plenty of love in your house, and you've got even more here on this blog. I wish blog's had "been the thing" back when Jillyan was born as we went through all the rough spots alone, learning everything the hard way.
Give little Reuben a hug for us, and let us know how the surgery goes!!!
As much as I love CHLA and feel that they do a wonderful job with complex kids such as Reuben, I am truly embarrassed by the miscommunication that you two have had to endure-it has only made an already unbearable situation even worse. I always feel that as "primary nurse" in the NICCU, it is an essential part of my job to keep the lines of communication open-to keep parents well informed and to get people to sit down together with the parents to "hash it out" until the best plan of care is made for the patient. I think sometimes it's a matter of "too many cooks"...
Well I'm glad you two persisted, as I know you always do, and that Dr. Starnes has planned the surgery. I knew that once he met you two and Reuben face-to-face that he would do the surgery. He is a very skilled surgeon and does not shy away from challenges-I think he lives for them!
I am thinking of the three of you and will see you next week. Kiss Reuben for me!
Love, Annie
As much as I love CHLA and feel that they do a wonderful job with complex kids such as Reuben, I am truly embarrassed by the miscommunication that you two have had to endure-it has only made an already unbearable situation even worse. I always feel that as "primary nurse" in the NICCU, it is an essential part of my job to keep the lines of communication open-to keep parents well informed and to get people to sit down together with the parents to "hash it out" until the best plan of care is made for the patient. I think sometimes it's a matter of "too many cooks"...
Well I'm glad you two persisted, as I know you always do, and that Dr. Starnes has planned the surgery. I knew that once he met you two and Reuben face-to-face that he would do the surgery. He is a very skilled surgeon and does not shy away from challenges-I think he lives for them!
I am thinking of the three of you and will see you next week. Kiss Reuben for me!
Dear Catherine, I am sorry to hear about Rueben being reentubated. I know that in situations like this, time seems eternal, but love conquers everything. It is out love that our little ones conquer some many obstacles. Catherine, I cannot imagine what you are going through, but my heart and prayers are out for you. I hope from my heart and soul that everything goes well on Monday. Lots of love and please know that we are here for you. Love, Maria (Mommy to David almost 14 months CHARGEr)
From Simon Howard:
Hi Catherine & Jason I contacted Yuka at the weekend to find out how Reuben was progressing and she kindly directed me to his blog. I was really pleased to see where he was at. Yuka has kindly kept me informed as to what has happened in the last couple of days. I am glad Reuben is stable again. Try to think positive and remember that there have been many children with CHARGE who have been in Reuben's situation and pulled through. There is no reason Reuben should be any different. Children with CHARGE seem to be real fighters and stubborn where life and problems are concerned. Just to let you know I am keeping the three of you in my thoughts and wanted to give you some cyber support. Don't worry about replying, you have more important things to do than keeping in contact with me. I will rely on Yuka to keep me informed about Reuben. All the best Simon
From Janelle & Andy
Dear Catherine & Jason
Your story is such a rollercoaster, it is amazing to read of Reuben's progress and the next planned surgery. The lows are unbearable though. Thanks for letting people into your world at this difficult time. It certainly does enable us out here to think of you often, pray for you and understand even a fraction of what you are going through.
We will be thinking of you on Thursday (as everyday) and hope that Reuben goes from strength to strength after this one.
Much love Janelle & Andy
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