Celebrate!

Bronson is one year old! June 2nd was his birthday. He welcomed the day with a nasty, congested cold. It was the second cold he has had and the most stressful, of the two, for me. My stomach sank every time he coughed.  It’s a gamble when he’s sick with a respiratory virus/bacteria because we never know when it could become a full infection that his body won’t defend as a result of the poor blood profusion to his organs. He of course conquered it like the beast that he is, just not on time to attend his quaint family party that we ultimately canceled. Canceling the party is futile though when realizing that he’s survived two open heart surgeries in his first year of life. That is a commemoration by itself! We fall in love with him more  every day with every new and fun personality quirk that he develops. He is a very busy little boy and the ultimate multi-tasker. He has mastered crawling with his wrists, or walking along the wall with his elbows so he can still maneuver with toys in each hand.  He’s been taking two to three steps on his own without holding on to anything. Pillow diving is his most recent thrill. He pulls the pillows off of the couch and onto the floor, plummets into them hands and belly first, and then tumbles around. Eric and I often sit on the floor with him and just laugh at his cute little antics.  Eating still continues to attack my mental stability. Transitioning him from the bottle to solids has been…. well, high velocity due to a VERY sensitive gag reflex. I’ll spare those details though! The primary goal will always be weight gain so as long as he remains on his growth curve we can celebrate. His most recent weigh in was 20lbs 1oz. We did a little “weight” dance. Every day with him is a divine blessing from the Lord.

I know that all we can do is ask the Lord that his will for Bronson is our heart’s desire.  I’m fully aware that HIS will is always greater than ours. Presently, it seems like the two are in alignment, based on the results from his previous cardiology appointment. His echo revealed increased mitral valve growth. Beth had created a graph to measure his valve progress with a goal of 2 on the graph being optimal. His valve measurement is 1.28.  How does this correlate to his overall progress? It’s a precursor for a bi ventricular repair, a four chamber heart versus the two chamber that he currently has. For clarification, his second surgery involved wiring his right ventricle to carry the majority of the workload that normally both ventricle’s carry. This is the standard for the second stage of the three stages of surgery to complete the single ventricle circulation. Dr. Emani, his surgeon in Boston, had added a modification to this stage, that is forcing blood through the left ventricle to promote growth ( “No flow, no growth”). This flow is what’s also permitting the mitral valve growth. The ultimate risk from this forced flow is that the left ventricle can stop developing which would restrict the blood from passing through, therefore creating back flow of blood at the modification site resulting in high pressure. The most accurate means to measure the lv growth is with a cardiac MRI. MRI requires sedation so we will continue to monitor the pressure via echo’s. I did contact Dr. Emani and asked him to review the echo. He and Dr. T, Bronson’s cardiologist from Boston, both reviewed the images and together agree that overall they are pleased with the success of the lv rehab. He didn’t mention anything related to the mitral valve growth. The email that he sent me was brief. The most significant point he made is that the pressure at the modification site is an 8, with 11-15 being the risky range for complications. Although it is encroaching that range, this is when, as he stated, “we usually start to see growth of the left sided structures. I would expect it would take us another year to develop significant growth of the left side. But it’s off to a good start at this point.” This is assuring, yet still leaves me with the same looming caution for complications that I’ve had since his surgery. Our next cardiology appointment is scheduled for August. I’ll update then. For now, we’ll persist with the present, celebrating his one year milestone and indulging in his amusing and comical personality. We’ll continue to be fervent with our prayers asking for a lifetime of joy and thriving, free from major medical complications.

 

Almost bad, good, GREAT!

Waiting for his echo at this cardiology appointment

We had our monthly cardiology appointment this past Tuesday. This was the first appointment we went by ourselves, just me and Bronson. I had expected that he wouldn’t have an echo because he had one last month and the plan has been to have echo’s every other month. He did have an echo at this appointment.  Beth, our adored Nurse Practitioner, came into the room after the echo and of course followed protocol and assured me that clinically all of his vitals were wonderful. This includes weight gain, O2 saturations, blood pressures, and EKG. And then came the… BUT. Last month they had noticed some bulging/swelling in his aortic arch. She and Dr. Rhee made the decision not to inform me then, because it was insignificant at the time. They knew they would be checking it again in the echo he had this month, which is why he had one. The bulge, or swelling I think I remember her referring to it as, did indeed increase. It did enough for them to inform me and enough for them to also notify Dr. T (his cardiologist in Boston). She and Dr. Rhee wanted to negate the possibility of the swelling in his arch as being aneurysmal. When I heard that, my mind instantly defaulted to heart attack. Dr. T,  being as insanely busy as he is, never replied to any of their attempts to reach him. Thankfully, I have a group of parents who also travel to Boston for their cardiac care, who unanimously assured me that Dr. T will indeed respond only if it’s critical. Going with the benefit of the doubt, he apparently was NOT concerned. Although the most appreciated, and devoted to his patients, surgeon, that Dr. Emani is, returned my page within less than five minutes. He briefly discussed the medical implications with Beth and advised that he would review the echo and consult back with his opinion. He did not give us a time frame though. Being the already, insanely inpatient person that I am, and already full of anxiety about the potential complications with the modifications to promote growth of his left ventricle, I was ready to BLOW UP the lines of communication to Dr. T until I knew what the next step would be! Instead, I left a message with Dr. Emani’s receptionist on Thursday. He of course called me back at about 6pm Boston time and confirmed that together with Dr. T that they are not worried. He explained that the swelling that Beth and Dr. Rhee thought they were seeing in the echo’s is appearing worse because of the angle that the images were taken from. He also confirmed that he intentionally constructed the aortic arch to be larger than usual because it needs to be able to effectively withstand the increased flow of blood. WHEW! RELIEF! Amid all of this angst and anxiety, I forgot to celebrate that Beth confirmed that his mitral valve has grown double the size since his last echo! This is miraculous news as long as his left ventricle is growing along with it. We won’t know about any lv growth until he has a heart catheter.

On a lighter note, the Bronsonator is 9 months! He weighs 18lbs and 5 oz. He’s been lingering at 18 lbs since he’s been mobile. Referring to “mobile”, he has been thrilled with his early developed skill of standing and yes, walking. Walking while holding onto the ottoman, along the sectional, the bathtub, and anything he can hold onto. He is so excited about his new found skill that it is the ONLY thing he absolutely insists on doing! I mean insist in the most literal sense. He has perfected his tantrum… skill (???) or at least he is trying to perfect it as a skill because he defaults to his oh so dramatic fits anytime we don’t position him to stand/walk. He even locks his knees so his legs are straight when we sit him down, thus leaving him standing. This seems exciting, and it is, except that he has skipped a crucially beneficial developmental milestone…. sitting up from laying down. He does not know how to get into a sitting position from laying down which only compounds his frustration when he wants to stand. He needs to be sitting up before he can stand. Crawling is the only way he’s going to learn how to and right now he’s scooting. Although, he has had some moments in the last few days where he’s got into a crawl stance and then doesn’t go anywhere. ;oD !! He just drops his tummy back to floor and off he goes! We’ve been giving him more floor time to promote his mastering of all of these necessary skills for INDEPENDENT mobility. Pictures below ;o)

 

On the brink of 17

The Bronsonator not only pushed past 15lbs, finally, he is now on the brink of 17lbs. Since my last post there has been a few uneventful events. Two of the three were routine follow up visits to monitor his vitals. His most recent appointment was last week. They did an echo (ultrasound of his heart), and all is clear. His cardiologist, Dr. Rhee, didn’t have any overly thrilling news to report about his mitral valve, whether there’s movement. However, Dr. Rhee has also clearly expressed his skepticism with the rehab of Bronson’s left ventricle. I don’t expect him to be excited about anything less than exponential growth or movement. I am guilty of praying for that miracle growth with a little bit of the “we’ll show him” attitude. ;oD ! Seriously though, Dr. Rhee is a great cardiologist. We’re blessed to be in his care.

The second of the three appointments was prompted by Bronson’s broken “bottle clock” and his loss of desire to take a full bottle for a span of eight days. Weight gain and feeding are the most challenging tasks to conquer with heart babies and can also be the most frightening when they aren’t conducive to overall growth.  Poor feeding, especially with the modifications to rehab his left ventricle, can indicate heart failure. Again, it was another blessing that his poor feeding left us all confused yet happy that he is not only NOT in heart failure but that he is just a BEAST! Laura, who will be transitioning as our primary NP when Beth leaves, ruled out teething, ear ache, constipation, reflux, and basically all other factors that would contribute to poor feeding. Now I speculate it could have just a little to do with his will to explore and grab anything and everything in his sight, aka his “busyiness”. He has got SO MUCH to do, things to see, and stuff to grab that finishing his bottle is no longer the priority on his agenda. It still leaves me confronted with the challenge of ensuring he takes his minimum volume. Since we’ve negated heart failure, the stress from him not feeding is minimal which has prompted me to be creative with defeating HIS agenda and motivating him to comply with MY agenda… his nourishment. We just want a chunky baby, that’s all! Tonight is the night I will be forever parting with the infant scale they loaned us after his first surgery. Not having the convenience to weigh him will leave me with some “scale” withdraw but also free me from that chain that has been binding me when his feeding is poor. I’m meeting Laura tonight to hand it off to her so she can loan it to a newly diagnosed family.

Before I conclude, I want to announce with great pride that the Bronsonator FAILED his Early Intervention evaluation. He is either on track or advanced with his development. They can’t qualify him for the program. ;oD !!

COME ON 15!!

Phillipians 4:6-7 “Do not be anxious about anything but in everything, through prayer, petition and thanksgiving present your request to God. And the peace of God will transcend all understanding and will guard your hearts and minds in Christ Jesus”.

It’s been all about feeding and weight gain since we’ve been home. Total caloric intake, volume, and weight gain are indicative to his overall heart health. His weight has been stagnant and teetering on the 15lb mark since surgery. We were able to pile on a miniscule amount of weight by increasing his calories per feed, yet paid a high burning price of reflux inferno. A significant decrease in his calories along with some minor tweeks with his reflux medicine stopped the burn. Those two adjustments gave us temporary feeding bliss but we lost some of those chunks of weight we had worked so diligently to add. Now we’re trying to combat his loss of appetite from the reflux.  The only thing that is securing my sanity right now is my relationship with the Lord and my faith that he is in control. I know that if we  keep persistent with finding the right balance of calories to promote weight gain without firing up his GI track, his “bottle clock” will reset, be back in full force, and then we’ll push past 15lbs !

We had our first visit with our local cardiologist here in Phoenix. Bronson had an echocardiograph and everything still looks great. I was very happy  with how Dr. Rhee, his cardiologist here, knows to watch for the pressure build up around the patch on the hole between his top chambers. I was equally impressed with how he understood the modification that Dr. Emani made to the papillary muscle on the mitral valve. The mitral valve and the left ventricle need to grow exponentially either before 2-3 years of age or before the pressure builds up around the patch. If the pressure becomes emergent, then we’ll be back in Boston with a potentially urgent heart catheter to balloon the patch.  It would enlarge the hole enough to keep him stable for the final surgery when he’s about 2 that would complete the single ventricle circulation. This would also mean no biventricular repair to give him a four chamber heart. Please pray for mitral valve and left ventricle  growth without complications with the patch.

We also got some disheartening news.  Beth, the nurse practitioner, who took Bronson  into her care in the middle of a reflux episode that was complicating his feeds during interstage (between surgeries), is leaving us.   She has been Bronson’s angel and she’s been fundamental with getting us to Boston. She is so dedicated to these babies and has an abundance of knowledge and talent with managing them to ensure they thrive for their second surgery.  Usually, when these babies have their second stage surgery for single ventricle circulation, they are released from the interstage monitoring program. The modification’s for Bronson’s left ventricle rehab have made his second surgery a high risk so Beth will continue to monitor him closely until she leaves in May of next year. She did assure us that she will train the new NP about his case and that he will continue to have the same great care. There’s  no replacing Beth though! He will have another echocardiograph (ultrasound of his heart) on Dec 20th. I will update then! Pictures below from his Phoenix appointment.

***********More pics in the “Just Pictures” page****************

Hellllooooo HOME!

We made it, again ;o) . The flight coming home was a little more stressful than the flight leaving home. Seems like it should’ve been opposite since we came home with a heart on the mend rather than leaving home with a broken heart. On the flight to Boston we had Bronson hooked to the portable oxygen and ready to flow, along with a portable pulse oximeter that gave a constant reading of his O2 saturations. Dr. T assured us that he did not need oxygen for the return flight and suggested that if I insisted on using the pulse oximeter that I check my own oxygen saturations :oD ! I reluctantly abided to Dr. T’s assurance, and remained stressed the entire flight. Eric even traded seats with me so that I would quit obsessing over how blue I thought Bronson looked. He only saw pink. Needless to mention that by the time we landed in Phoenix, my “blue” goggles were seeing pink also! Amazing how stress distorts reality.  The story provides for a fun laugh anyway. 

I’m sure everyone can imagine, it’s GREAT TO BE HOME! Not just home, but home with Bronsonator’s heart on the mend. I previously noted in a prior post that due to him being on heart and lung bypass that he lost all of his immunity. We are also in the height of flu and cold season. Both of these factors equate to continued isolation from public places, crowds of people, and limited exposure to visitors in our home. It will always be a life long necessity that he avoids sick people when possible. We have plans to start the “Tour De Bronson” around March. Meanwhile I will keep all of you entertained with continued pictures and important news as it develops. Below are pictures from our last few days in Boston. ENJOY!

 ******************More pictures in the “Just Pictures” page ***********************

Friends through heart

We are all packed up and ready for take off. With a “crazy o clock” wake up at 3am Boston time tommorrow, this post will be brief followed by an even more brief snooz. It’s 10pm here. I attribute this late night to time spent with heart friends and an esophagea friend (esophagea atresia), sharing stories, laughing, and noting grattitude that we’re all here together and can relate and support eachother through our journeys. I might just mark the Yawkey Family Inn as our heart home away home. Though we’re leaving tomorrow, we’re taking with us new friends who have children that are truely heroes.

Bronson had his last appointment with Dr. T today. His chest x ray still looks super, which means his lungs are dry. We will follow up with his cardiologist in Phoenix within a week. The plan from here is to monitor his left ventricle and pray for growth without any high pressures from the patch that Dr. E used to make the hole between his top chambers smaller. We have the long awaited picture with Dr. T and his nurse practioner Tera holding Bronson. Stay tuned! I will post the pictures along with some from the last few days, when we get home. Thank you for sharing this part of our journey with us. I will update again from HOME!

 

GOBBLE GOBBLE

We had a super full of food Thanksgiving! A group from the community came into the house and cooked a large breakfast very early this morning, so early that we missed it. Fortunately, another group came in and cooked a Turkey feast. We filled ourselves to the brim with turkey, mashed taters, peas, squash, gravy, pumpkin bread, rolls, cranberry, about ten pies, and some custard cups. There is so much food that we had thirds and fourths for dinner and will have left overs for the next few days. We are very thankful for the other families here that we shared our day with. Bronson charmed the ladies and entertained the group. Another mom who’s baby will be in the NICU until she’s six months old, was so enamored with the Bronsonator that she took about 50 picutres of him. I keep thinking we need to send him to Hollywood :o). The Lord has blessed us in so many ways that we are very grateful for. The doctors who have the skills and dedication to mend hearts with congenital defects. Everyone at Eric’s job including the company owners and his direct boss who have been supportive of him being here. The management at my job who have made plenty of exceptions to secure my job while I take care of Bronson. Our family who have been significantly supportive with getting us here. We wouldn’t be here without each of their individual contributions. Finally to ALL of you who have devoted your hearts, minds, and prayers for Bronson as he conquers these open heart surgeries. We hope everyone had as wonderful of a Turkey day as we did!

 

^^^^^^^^More pictures have been added to the “Just Pictures” page^^^^^^^^^^^^^^^^^^^^^^

 

Back at the Inn

 Psalm 98:1 Sing to the LORD a new song, for he has done marvelous things; his right hand and his holy arm have worked salvation for him.

It’s been two days since Bronsn’s discharge and it’s felt like a week! The late night “partying’ with the nurse’s has rocked ALL of our sleep patterns. Last night we were up the entire night trying to get him to sleep. We finally conquered his sleep feat around midnight, only to wake again at 2am and start over. It is at least to our advantage to all be in the same room to retrain him to sleep through the night. For our sanity, we hope to defeat this very minor setback by the time we leave. Our time has been spent lounging here at the Yawkey Inn enjoying the Bronsonator’s smiles and giggles. Sunday night a local group brought 3 large trays of veggie lasagna with some sides to compliment so we socialized and met some more families. Last night I reheated the left overs and made some fresh steamed broccoli and put it out for all to endulge, again. We met some more families that missed the first serving on Sunday.

We had our first post sugery cardiology appointment with Dr. Tworetezsky. He showed us the live images from the echocardiographs (heart ultrasound) from pre surgery and post surgery. The mitral valve is already showing positive movement from the blood being pumped through the left ventricle due to the smaller hole (where Dr Emani put the patch) between the top chambers.  His lungs look perfect and his O2 saturations are where they are expecte to be. All GREAT NEWS! We have our final appointment next Monday, before we leave on Tuesday. I gave Dr. T notice today that there will be a photo shoot with him and Bronson at the last appointment. He said he’ll be sure to get his hair dyed for the event :oD ! As always, I’ve added some pictures. Some are from his appointment today.

Thank you, mom, Rhonda Deines for the todays Bible passage. It’s perfect for “Expecting Miracles”.

MOVING OUT!

We’re waiting to see the nurse practioner for discharge! Bronson came in here and flew through this surgery leaving the medical team in awe. We are BLESSED! He now has single ventricle circulation which means blood flows through his lungs passively instead of being pumped from the heart. We have until his 3rd surgery, in about two years for his left ventricle to rehabiliate for the bi ventricular repair. If the left ventricle doesn’t rehab then he will get the final surgery to complete the single ventricle circulation. PRAY FOR A MIRACLE that his ventricle rehabiliates. He has two more clinic visits with Dr. Tworetezsky before we can fly home. We’ll be leaving the 29th. He’ll still be in isolation to protect his immune system. It’s still weak from being on bypass and we’re in flu season. “Tour De Bronson” will likely be in March after flu season.

These last two days have been busy. Bronson has had some late nights out at the nurse desk entertaining and socializing because we was restless. Last night was my shift and his nurse took him for a cruise through the halls in a stroller. Even though he’s done with being poked, cuffed for blood pressures, and medicined, he just might miss the late night partying :oD! Below are some pictures from the last two  days. There’s one of him with Dr. Emani. Dr. E tried to pick him up to hold him for the picture and Bronson cried. He doesn’t know just how much Dr. E knows him… from the inside out ;o) We’ll have one with Dr. Tworetezsky to post soon. Below are some pictures from the last few days. They’re out of order.

While there was no actual sugar given to Bronson, there were two very loving parents providing more than enough “sugar” to get all the medicine down. Bronson is definitely taking his fair share of the meds. He has moments where he doesn’t like it, but I will tell you he sure does come up smiling more times than not.

He truly is a fighter. So much of a fighter that he has graduated and is taking his medicine by mouth. This is a very good sign as this transition typically when babies are being prepped for release! He still needs to be monitored pretty closely at this time, and I think Eric may have a night cut out for him (nothing he can’t handle); however, there is a lot of good talk happening around here!

As I type this the nurse is commenting to Eric and Tab about their strong baby. I have heard a few times today that this may be one of the hardest days he has had, and I will tell you that it is nothing compared to what I expected before I arrived this afternoon.

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