Moving on down, but not out, and back again


We are out of the ICU and into the step down unit as of Sunday afternoon August 3rd. We got into our new digs at about 1pm, a double size room all to ourselves and then he took almost a 4 hour nap. All good the first night. I (E) stayed that night and as the night nurse was in and out of our room she was weaning B’s oxygen from the 2 liters an hour that we moved with all the way down to 1/4 liter an hour. Waking through the night a couple times I saw that his oxygen levels were great (98 – 100%) and his heart rate was slowing down appropriately (112 pbm down from around 150 in the ICU). He ended up sleeping about 10 hours through the night which was the best sleep he had gotten since we got to Boston. In the morning the day nurse tried to pull the oxygen completely but after Bronson de-satted (o2 levels reduced alot) the consensus was that it was a little early to remove that support completely so they left the nose cannula in place. As the day went on Bronson did ok but not a lot better than that. Ate some food, drank some water, statistically stabilized,  but all  less than his last day in ICU.  Monday evening wasn’t great but we have already recognized that Bronson is fed up with being here and nurses and doctors touching him and listening to him and all the rest that is going along with still being inpatient,  so we weren’t too concerned. Monday night was Tabatha’s turn to stay and through the night she noticed B’s o2 levels dropping again and made sure that the nurses turned up the level,  but he kept dropping. Tuesday he was getting more oxygen but his levels were still declining. He got more and more but his body wasn’t keeping up with it. The decision was finally made to give him a transfusion to elevate his red blood cells which should make oxygen delivery in the body easier. As the transfusion was going along, as it should have been easier for him, it was getting harder and harder

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. Getting 2 liters of o2 his sats (oxygen saturation levels) kept falling, eventually below 90. The nurse got a few doctors involved, one thing led to another…..I’m finishing this post from in the ICU again. Bronson is back on bi-pap breathing support and also back on iv diuretics to clear all the fluid from around his lungs which have been making it tougher for him to breath. I’m at a loss for any good way to wrap this up, but I suppose that we had expected to have a few bumps,  just not huge ruts in the middle of our relatively smooth ride.

Slow and steady, but slow.


NCM950106Here we are 9 days post surgery. Breathing tube has been out for a couple days, and Bronson is still sedated and on breathing support by way of a bi-pap mask. Last night they reduced him to 30% oxygen, which is about room air and the mask is still blowing constant pressure in his nose which helps stimulate him to take breaths. The steps that we’re taking with Bronson are excruciatingly slow, however slow is good in this instance. The nurses have assured us that even though it seems slow to us, he is still flying through recovery.

We are finding humor in the little things like the way he keeps scooting around his bed determined to still be “busy” as much as the sedation will permit. His nurse today has been with him the most and she has finally relinquished her will to keep him neat and proper on the bed. He keeps ending up with one foot up on the side rail, his head turned the other way, and scooted down about half way on the bed. She said this morning that she’s finally given up on the idea and is happy with him just being comfortable

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. So he is staying true to his strong willed reputation and has won his first battle of wills! We have started trading off nights staying here in hospital due to is low level of sedation. It’s important to us to be here in case he does wake up at least one of us is here to comfort and reassure him. So here we stay, waiting on pins and needles, for the next small step toward him waking up and getting us all out of the ICU. Most of the bits of time that we have gotten out of here have been eating and sleeping. As we go through this Tabatha has discovered that her saying of “low stim(ulation)” for Bronson applies to her as well. She managed to hit her peak input after he was extubated and had to go decompress. She called it an emotional detox, and found a nice little park at the harvard medical campus which is right next door to the hospital. The nurse the last two nights told Tab to behave or she’ll be one of those moms that they talk about in the break room. I have found that my stress stays relatively low through most of it all as long as I can have a drink with dinner every couple days, which actually has been direct orders from at least 10 people on his care team.

They are giving him a break from the bi pap mask right now and setting up for the next step that will get him closer to breathing on room air alone. As long as we continue with slow and steady the updates will also be slow!

 

 

BEAST MODE!


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6 weeks went so fast. We got back here to Boston on Wednesday the 16th, pre-op appointment on the 17th, then dropped Bronson off at 7:30 (after checking in at 6:00) the morning of the 18th. From the time they took him back until we finally got to see him at night was 14 hours. It was a long day for us, a long day for him, & a long day for the surgical team. He was on bypass twice, the first time for a little over 5 hours and the second time for about an hour to control some excess bleeding. Dr Emani said, when he finally got to meet with us, that he was pleased with the way the surgery went and that he had gotten to everything that he wanted. He did some work on the mitral valve, some work on the pulmonary arteries, and looked for a hole that had been spotted on Bronson’s last MRI but he was not able to physically find it. (We’re not really sure that it is even there.) All of that he did in addition to taking down “The Glenn” (single ventricle) circulation and putting back Bronson’s circulation to that of a 4 chamber heart

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. He told us that he thinks there are some more collateral blood vessels going to the heart that may need to be taken care of soon. That could be accomplished in the cath lab, as well as investigating why there are elevated pressures in his heart, probably as soon as Monday. For now Bronson is in ICU heavily medicated and on a breathing tube. He is reacting well to medication, is stable at this point, bleeding has slowed to minimal and he looks surprisingly very good (considering all that time in surgery). Through the day today the staff reduced a couple of his meds and the plan for tonight is to re-start his diuretics. We are anticipating no major changes until they are ready to pull the breathing tube from him, so that should mean a peaceful night tonight and a quiet day for us tomorrow. Meanwhile, we are taking advantage of this “boring” period and keep current with our sleeping. It will be GO TIME when he wakes up with a four chamber heart. BEAST MODE will be in full effect! Bring on the Bronsonator! Pics below from Pre op and before they took him back for surgery.

Pictures! **CLICK ON EACH PICTURE TO ENLARGE**

 

Paralysis by Analysis


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We are home with another 10 day trip to Boston to log in the memory bank! We arrived in Boston on Thursday. Pre op testing was Friday. Heart Catheter and MRI was after the Memorial Day weekend on Tuesday. Wednesday we met for an hour and a half with the surgeon, Dr. Emani to review the data and determine the best surgical path for Bronson’s lil heart.  We went into that meeting with 3 real possible outcomes to choose from. We can stay single ventricle and move on with the third surgery to complete that circulation, the Fontan. With this option the left side that grew since his second surgery back in Nov, 2011 (when we started this journey to pursue a whole heart) would shrivel up and be negligent to his circulation. The second option is more like a hybrid of the Fontan and the whole heart. It would complete the single ventricle circulation while still utilizing a small percent of the left side ( similar to the way his heart is working now). Third, is the whole heart conversion from half a heart, the Bi Ventricular repair. This option is again the reason we even embarked on this path that led us to Boston. It’s also the most risky with the most unknowns for Bronson’s future quality of life. Yet it also presents the highest return on rewards than a half heart offers. It’s important to clarify though, that there are plenty of adults who are living an exceptional quality of life with a half a heart. They’re defying the odds and they’re succeeding at everything they were told they would be limited to, like running marathons, skiing, gymnastics, having a child, etc. Since Bronson was diagnosed, at 2 weeks after birth, we’ve been assured that he will be a premier candidate for the single ventricle circulation. Then we discovered the option to grow his left ventricle and his mitral valve with the hopes to someday convert him to a whole heart which promises a more “normal” quality of life.  It seems like an obvious opportunity, until the “unknowns” become known by seeing the outcomes of other kids who have had the same surgery.

In the beginning, it seemed so surreal that this possibility would even become our reality. Now 2 years later it is our reality. Yet within this 2 years I’ve seen a handful of kids go from an ideal post op recovery to left ventricular diastolic failure (the lv is stiff and doesn’t relax) a few months later. While it’s an invaluable asset to connect with other families who invite you to witness and share their personal journey’s, it has been crippling for me. It is so easy to project their outcomes onto Bronson’s future. With these personal accounts in mind I eventually came to the conclusion that I didn’t want to experience the risks and unknowns of a “new” surgery that promises but does NOT guarantee a more optimal quality of life. So Eric and I went into the meeting with the surgeon and the meeting with the cardiologist, convinced that we were going to opt out of the whole heart repair and stay with the “known” route, half of heart. But then the data from the heart catheter prevailed against our judgment

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. The pressures in Bronson’s heart have reduced from a range of 14-16 last year to now a range of 9-11. A normal heart has a range of 8-10. This lil nugget of data has shown that his heart is capable of strengthening with continued exercise. It also offers optimism to both the Boston team and to our cardiologist in AZ that with a full flow of blood it will successfully regulate his entire body. Also, Dr. Emani is expecting to salvage his mitral valve with some handy work and avoid a replacement valve. These nuggets, along with the cons of the other two options, left us with a lot of analysis. So much analysis that Dr. Emani recommended that we go home and return in 6-8 months for another heart catheter to reevaluate the data. With that option, we both left the meeting paralyzed, mentally and emotionally. So we prayed, we sought “wise council”, and we prayed some more. The next morning, Thursday the day of scheduled surgery, Wayne our cardiologist called to offer his insight. At the end of my conversation with Wayne, I finally felt an overwhelming sense of peace that the right decision is to convert Bronson’s sick lil heart from working as one ventricle to a heart with two ventricles and pray that with time it becomes more healthy. Instead of waiting for 6-8 months which would be Jan/Feb the peak of cold and flu season they were able to get us back on the schedule in 6 weeks July 18, which negates the need for another heart catheter and is in the peak of summer, an ideal season for heart surgery!  I now believe that the Lord wants me and Eric to whole heartedly 😉 embrace the journey before us with every ounce of faith we have in HIS will, completely trusting that he brought us to this junction with full intention that we continue this path to a whole heart. After all, we prayed and asked that you would pray, that HE would grow the left side of Bronson’s heart. HE did! I have committed to forgo my own understanding and insight and acknowledge that the Lord has made clear this path.

Below are some pics from our stay. **NOTE: You can enlarge the pics by clicking on each one and using the “back” key to return to the rest of the pics**

 

 

 

 

 

 

 

 

 

 

 

Just Like Yesterday…..


 

 

 

We were here almost exactly a year ago, yet it feels like it was just yesterday! Our flight was smooth and hassle free. Everyone from the airport attendant to the TSA escort to the flight staff and even the cab driver was exceptional. We arrived to the Yawkey House yesterday just before 7pm EST. Ordering pizza was the priority on our non agenda , after we dropped our bags in our room. So we ate, unpacked, and THEN we finally slept. 6 hours later we started the “snoozing” to our 530am (230am AZ time) alarm, and somehow got out of the door around 7 to make our 730 cardiology pre op tests. Today was X ray, blood draw, echo (ultrasound of his heart), along with basic vitals like O2 sats,  blood pressure, and EKG. The Bronsonator  was a superhero through it all, we are so proud of him! He even entertained us with his dance moves that drew a small crowd in the hallway outside of the x ray lab. Life is truly a party for Bronson and he’s THE LIFE of it!  Below are some pics from our day. We are off for the weekend and plan to make the best of it and enjoy whatever we can find to do to occupy us

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. We report back to the hospital at 7:30 a.m. on Tuesday the 27th for his heart catheter and cardiac MRI. Until then have a super duper Memorial Day weekend and I will update on Wednesday with the surgical plan.  Thank you for all of your prayers, thoughts, text messages, emails, and phone calls today!

 


Back To Rehab


We came to Boston in pursuit of a four chamber heart. Along with this came some… well, naivete. Naive in the sense that a four chamber heart would mean we would be as close as we could be to “normal”, since two chamber hearts aren’t… normal. Two chambers are indeed capable of  not only sustaining life, but can even provide a great quality of life. Since we’ve began this bi ventricular journey, we’ve learned that four chambers does NOT in fact promise a higher quality of life than a two chamber heart. A half of a heart that has never been whole requires alot of rehabilitation (in Bronson’s case). When we left Boston from Bronson’s second surgery we had the expectation that the only rehab the left side of his heart would need to become functional is more size.  Grow the necessary parts on the left that were too small and then just connect them to the right and SHAZAM… A WHOLE HEART! Not how it works. A newly whole heart that has never been whole requires alot of training and exercise before it’s ready to regulate an entire body. Sometimes, even with maximum conditioning from worldclass trainers (cardiologist and surgeon from the top hospital), four chambers still can’t manage an entire body without failing. Heart failure after biventricular conversion from single ventricle circulation is a very realistic risk with Bronson’s anatomy that Dr. Tworetzsky and Dr. Emani both had to calculate carefully before they made the decsion to move forward with the repair now, or wait.

His heart is exactly on that fine line to convert or stay single ventricle. Half of the data from the echo, MRI, and catheter support conversion. The other half of the data suggests that we wait and see. His ventricle and his mitral valve have both grown significantly enough to support a four chamber heart.  In the cath. lab Dr. Lock found two collateral vessels that had the effect of pumping extra blood down the left side.  While they helped the left ventricle grow, they could put Bronson’s body at more risk of internal bleeding so they closed them off.  The mitral valve has grown pretty good and is keeping pace with his body but is leaking blood back into the left atria (about 25% ).  Inside the newly grown left ventricle the muscle mass is still just a little thin and can certainly use a little more time to bulk up before we try to make carry more than the 75% of the load that it has been.  Dr. Emani and Dr. Tworetzsky also felt that his diastolic pressure was just a little higher than they would like (he’s at 14 and they want him at 10 or preferably 8).  They said that if that pressure was 10 they probably would have continued with the surgery now.  At this point, with all of these factors considered, we are better off to let the boy grow.

We are coming home with a more aggressive approach to rehabing the left side. They are changing  his medications a little.  Furosimide (a diuretic) is going to be 3 times as much, and enalipril (sp?) (to lower blood pressure) is going to be “a medium dose” for a boy his size.  We will be going to quarterly cardiology appointments in Gilbert with Dr. Rhee and an echo in 6 months evaluate progress with this new plan.  At this point our understanding is that we’ll be back here next year for surgery. just not sure if it will be for the 4 chamber or to complete the single ventricle circulation. When we come back Bronson will need a new mitral valve (there are several options of different ones) so him being bigger makes that decision a little easier to make for Dr. Emani.  If he can go 4 chamber at that point, we’ll GO FOR IT!  If the 4 chamber won’t work for him then Boston will do a “modified” Fontan (final surgery to complete single ventricle circulation) that would utilize this big beautiful left ventricle. We are sure that he would do great with that circulation.

So with all that said……..we go back to waiting.  It is is still a small dissapointment for us.  We came to Boston this time ready for the fight and armed to conquer all of the risks involved with a whole heart repair.  Tabatha does such a great job of growing and keeping our little boy healthy for the next inevitiable surgery and she gets to keep doing it.We were just expecting to bring him home with some closure to BIG open heart surgeries. There will NEVER be a guarantee to the end of surgeries though.  As it is we bring him home in the same state that we left in, HOWEVER, we have a great new understanding of what his body has been doing with the modifications that Dr

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. Emani made to grow his left side.  And we are bringing him HOME!  It will still be a bit of work but with the adjustments to the rehab of his heart we are back to having high expectations for next year.  Tab has equated all of this to an appropriate analogy of training for a marathon. We just completed a 5K so now we have to get back to training (exercising the ventricle) and work to make sure Bronson is ready for the main event. A whole heart!

While We Wait…


We are still waiting for the team (the cardiologist, surgeon, and catheter doctor) to collectively review all of the data from the procedures yesterday, before they determine if they will move forward with the four chamber repair

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. Meanwhile, here are some pictures from our time at the Yawkey house, his first day of clinic tests, and some before we turned him over for his heart cath.


We Made It!


IMG_20130712_183617  We’re here at the Yawkey House in room 38, right next door to our room from our first stay- room 37. All of us, including most of our luggage, arrived together… EXCEPT for Eric’s bag. It was originally deemed lost… and NOT found by the lost luggage desk at the airport. This morning I called the main line for lost bags and was delighted with the news that it is actually in route for delivery. Eric’s planned shopping spree has been canceled. He’s quite happy about it!

We’ve been endulging in our time with the Bronsonator with strolls through the neighborhood and relaxing around the house. Currently the weather is a luxurious relief from the hellacious hundreds we escaped from in Phx. We have been informed though to expect a  humid hell here by next friday, scheduled surgery day

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. That will probably result in a 20 minute cab ride to the hospital, instead of a 10 minute stroll. Bronson has adapted wonderfully. Last night, at about 8pm AZ time,  he climbed (in true BEAST fashion) into his crib with absolute resistance to any help from us to assist him. Those of you who know… the GMa’s… helping him can create instant chaos in his very serious 2 year old world in which he has conquered! Even though we’d like to avoid alternate surgeries for anything other than heart repairs, we’ve relinquished our ability to helping him climb in and remain on standby ready to catch. Currently, he is napping and Eric is too… a common scenario for the three of us! Below are some pics of our non adventure so far. ENJOY!


CHD… What? Awareness… So?


 

February is National Children’s Dental Health Month, Low Vision Awareness Month, International Prenatal Infection Prevention Month, and Heart Health Month, and a few more, specifically Feb 7th through the 14th is Congentital Heart Defect Awareness week. Most of us are “aware” that it’s Heart Health Month more than we are about the other causes. How can we not know? It’s all over TV, billboards, the radio, internet adds: Heart Health Month: What Every Woman Should Know, Quiz: Test your own heart health knowledge, The ABCs of Heart Health, etc, etc, etc. We NEED these BIG Media campaigns for heart awareness. We NEED them because these campaigns offer crucial information that could help us save our mothers, our fathers, our grandparents, aunts, uncles, or even ourselves. What about our… children? WHAT? Children? Children are too young to worry about their hearts. “Heart problems” only happen to adults. What about YOUR NEWBORN BABY? Or YOUR UNBORN BABY? Anyone ever see a Big media campaign about CONGENITAL HEART DEFECTS? If you have, PLEASE share it with the World! Post it and repost it on your FB page, TWEET about it, Blog about it, text it, email it, shout it from a mountain top, “CONGENTIAL HEART DEFECTS ARE THE NUMBER ONE BIRTH DEFECT”! 1 in 100 babies are born with a heart defect from as least complex as a hole in the heart (or a few) to the most severe like Hypoplastic Left Heart Syndrome (or Hypoplastic Right Heart Syndrome, or more simply understood, “half a heart”.) I want you to share it for the same reason the American Heart Assoc. shares their essential facts; so that you can help save a life, yours or a loved… adult.  I, and the entire “Heart Mom/Parent” community want you to share OUR critical… stories, with the world. We NEED people to talk about us, to EVERYONE. Not enough people are talking about us. This  means not enough money is being raised to spread awareness, fund research efforts, or simply educate parents and future parents about the signs and symptoms of a congenital heart defect in your newborn baby, or what to ask at your 20 week ultrasound to ensure a potential prenatal diagnosis. Mostly, I WANT you to share because if someone had shared with me, Bronson’s HLHS would have been detected in utero and we would not had taken him home in heart failure.

I am personally convinced that Bronson’s CHD was discovered by my God given motherly instinct and by the will of the Lord because I absolutely was not “aware’. I am a “Googler”. I Googled all things pregnancy related to precautions and complications at delivery. I NEVER stumbled into anything about CHD in my frantic quest to be aware and prepared, or even reassured. Congenital Heart Defect was NEVER mentioned, talked about, no pamphlets in the waiting room, or ever considered during my prenatal care. My OBGYN was even thorough enough to rule out cleft palate. I was asked 5x by himself and even 3 different doctors  in his office if I wanted to test for Downs Syndrome. I even had 2 extra ultrasounds, one was a growth ultrasound because Bronson’s head measured 3 weeks ahead of my actual gestation. We proceeded through the pregnancy and June 2, 2011 we embraced our 8lb 6oz, feisty, fun, quirky little “kicker”.  Other than very mild jaundice, he looked healthy. He passed all of his newborn screenings. He just wouldn’t latch on long enough to breast feed. We were in the hospital 3 days and that entire time the nursing staff and lactation consultants worked diligently to get him to latch. By discharge, he was latching occasionaly and falling asleep while he was nursing. He lost more than 11% of his birth weight. We were sent home with direct orders to see his pediatrician immediately. The next morning we had a weight check at her office and he’d lost more weight. She examined him with awe at how beautiful he looked and then scheduled our next appointment to check his weight at the end of the week. She assured us that weight loss is normal for newborns. Those first two weeks at home were mentally and emotionally excruciating for us. He was always hungry. His latch was still weak and he was still falling alseep during nursing. He wouldn’t sleep more than 2 hours at a time because he was so hungry. His weight continued to decline. By the end of that second week, the day before his 3rd weight appointment, I heard a wheez in his breathing and his cry had become silent. That same night Eric and I took turns holding him through the night on the couch just to keep him calm long enough to sleep for an hour or a little more at a time. I felt it down in my soul that there was something critically wrong with him. I had no insight at all into what it could be, I just knew it with my intuition, and it hurt before I even knew what it was.  He was in critical heart failure. His lungs were wet, producing the wheez and muting his cry. It was confirmed at that third appointment to check weight, when I mentioned to the doctor that I heard him wheezing. She listened to his heart 3 times before she could convince herself that the murmur she was hearing was distinct enough to warrant a trip to the children’s ER. He was admitted weighing 7lbs.  She was in denial. I knew it by her reaction when she listened to his heart. It was the hand held pulse oximetery device for older children and adults that showed a consistent high 60% to 70% (it should be 95-100) oxygen saturation in his blood, that confirmed her conviction.

Why would any pediatrician be reluctant to acknowledge the most common birth defect responsible for more deaths than any other congenital defect? Bronson presented every sign and symptom. They were boldly affirming themselves to everyone involved, from the hospital staff to our doctor. Weak latch during nursing, sleeping through feeding, weight loss/inability to gain weight, too fussy to sleep, crying without producing any sound. He also had cold feet. We are not the only family who has blindly encountered CHD. It has devastated to0 many families with it’s silent fatality. Babies have been lost in the arms of their mothers at home without any warning. Teen athletes to adults have relinquished their lives on the sports fields to an undetected CHD

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. Yet, the mass media coverage for these tragedies are mostly absent. Regardless of the facts, there is sadly a significantly small amount of  funding available for medical research and prevention, education for the public, to outreach and services for families. Even celebrities who themselves have survived life saving interventional procedures and surgeries as children, or have children that are afflicted, remain questionably silent. This obvious lack of awareness ignites a burning passion in the souls of all heart moms to declare action. While we are many and tightly knit with some powerful mom’s working diligently with their entities, we don’t have access to the outlets we need to successfully reach the public to the extent that organizations like the American Heart Assoc has. We have facebook, Twitter, email, and blogs. We are using them as effectively as we can. It’s not spreading fast enough, wide nor deep enough, which is why WE NEED YOU! We need YOU to use YOUR Facebook, YOUR Twitter, Your email, Your Blog, Your celebrity acquaintance, media relation, to tell OUR stories, to tell Bronson’s story. Tell his story to an expecting mother. Educate her about asking at her 20 week ultrasound if all four chambers of her baby’s heart are visible, if they focused in to view all of the arteries, if the stomach and heart are in the correct position, if the heart rate and function are normal? Tell her to ask for a Pulse Oximetery screening for her child before she leaves the hospital. Google more about Congenital Heart Defects and seek information about organ donation. Finally, talk to ME about CHD. Ask me more about Bronson’s journey. I want to share everything I know! I want the world to know about the most prevalant killer of children, 2x more deadly than all childhood cancers combined. Be Aware and remember the signs and symptoms that Bronson revealed, so if you see them in your own or another newborn baby, you can SAVE A LIFE!

Below is a picture timeline of Bronson from his birth to before and after both surgeries to current.

 

It’s a NEW YEAR!

Happy New Year! Thank the Great Lord, this year was mostly uneventful. There were some “false” scares that weren’t worth mentioning. Most all of them were due to my vigilance to be hyper intuitive to every nook, crany, crack, and crevice of Bronson’s little body

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. We are SO PROUD though to brag about his weight being confirmed in the 50%! Eating and growth is a guaranteed challenge with our heart k…ids. It’s one, that everyone knows, I have made my personal mission to conquer. So with plenty of emotionally taxing days I am finally at peace with this piece of the journey. We are in cold and flu season which means we are on lockdown in an effort to avoid RSV (a common cold to an adult or healthy child but potentially deadly for a heart baby) and the flu. Lockdown this season has been slightly more laxed than last year. He’s bigger and stronger and he’s not recovering from open heart surgery like he was last year this same time. We did, however, start the season with a …. SNEEZE … and alot more. Bronson has already recovered from 2 colds that thank the Lord some more, were just… colds. Still VERY stressful!This year will either be the year that Bronson earns his final surgical badge of honor with his third surgery or it could be the start down a path of unknowns and complications. According to Dr. Emani, his surgeon in Boston, he plans to see us in Boston in Nov. Nov is when he will be almost 2.5 and ready for evaluation to determine when his surgery will be. As you all know, we are pursuing a four chamber heart for him rather than the common 2 chamber/ single ventricle that he’s currently living with. The assumption so far is that since he is thriving without any known complications that the left side of his heart is growing. This offers optimism that four chambers is in his future. With the battles lost this year and the fights still being fought by fellow HLHS babes who I’ve been connected to by “heart”, it’s sometimes challenging to be over zealous. This CHD ride that we’re on is never predicatable. It can take devastaing dips and turns at any second without warning. I have become good though at cherishing every moment. Learning to live like there is a lifetime of future for Bronson grants me peace and sometimes is a default thought. Recently it’s been “easy”, acknowledging that easy is certaintly relative to how much more challenging it is for other families, to rellish the present with how much he is thriving.

We will march on in 2013 with our hearts full of grattitude and an abundance of thanks to our Savior who we give ALL OF THE GLORY to for Bronson’s detection, to leading us to the top center in the world for CHD surgical care, to his current health and strength, to the families who we’ve been connected to that have shared their personal triumphs to devastation this past year with their own journey’s. Always conscious that life with a complex Congenital Heart Defect like Hypoplastic Left Heart Syndrome is never promised nor certain, we’re still full of hope that the “Bronsonator” will prevail! We are always thankful that we have all of you supporting us, praying/thinking about us. Here’s a “virtual” toast to LIFE in 2013!

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