I'll save you from the nitty gritty of Finley’s birth story, but our hospital stay was full of high highs and low lows. Due to the nature of Finley's delivery, he had an APGAR score of 2.
**If you're not familiar with the APGAR score, it is a scale from 1 to 10, depicting how well baby is doing after birth.**
The nurse retested him after 5 minutes and it was still unsatisfactory. After a few hours, Finley's APGAR score had risen, and we thought we were on the mend. But then, on Finley's second day of life, we had our first encounter with a Pediatric Cardiologist. At this time, a nurse came in and unfortunately, we couldn't necessarily depict all that that was being said, due to a FaceTime that was taking place simultaneously, across the room, (mom I know you're red hot reading this right now....), but we knew that something was wrong and we knew to an extent, that it was serious. The nurse told us that a Pediatric Cardiologist would make his way to our room and give us a better understanding of what was happening- especially because we couldn't hear at all what was going on and we were all very concerned about what was happening and what was wrong with our baby. The Pediatric Cardiologist came in that evening and was very kind and had the best bedside manner. He told us a little about what Finley was experiencing and encouraged us to stay positive and that he would work through this with us. The doctor illustrated a picture of what was happening in Finley’s heart, we were later given the diagnosis of, a Small Restrictive Supracristal Ventricular Septal Defect (VSD).
The Cardiologist asked that we call the Children’s Hospital of Colorado Springs and make an appointment with his office so that we could get more imaging and testing done of Finley’s heart. This was the first of many conversations about our brave boy with a very special heart.
At 2 days old Finley was diagnosed with a Small Restrictive Supracristal Ventricular Septal Defect (VSD).
** The Supracristal VSD is the least common type of VSD in the Western Hemisphere,
accounting for approximately 2%-5% of all defects in this part of the world. This specific defect can cause significant aortic insufficiency secondary to prolapse of the aortic valve. When this occurs, surgical repair of the defect and suspension of the aortic valve is indicated.
Finley’s first “real” cardiologist appointment was about 2 weeks after being born. Finley met with a different doctor than we had met in the hospital, Dr. Greensides, who we saw consecutively until December 2019. At this appointment, we got an actual diagnosis for Finley’s heart murmur- Small Restrictive Supracritsal Ventricular Septal Defect (VSD) and we were told there was a remote possibility that it could close by itself. We were told that the main objective was to watch and ensure that it (the VSD) doesn’t affect the Aortic Valve and cause it to leak. Ultimately, we left that appointment being told to treat Finley as a normal baby and that’s exactly what we did but were told to prepare for potential surgery in the coming months- they wanted to let Finley grow a bit before enduring open-heart surgery.
A month later, we had a follow-up echocardiogram. At this appointment, the doctor determined that as well as the Small Supracristal VSD, Finley also has a Mild Pulmonary Valve Stenosis. Again, we were to treat Finley as a normal baby.
**A Mild Pulmonary Valve Stenosis, is a narrowing of the valve located between the lower right heart chamber (right ventricle) and the lung arteries (pulmonary arteries). In a narrowed heart valve, the valve flaps (cusps) may become thick or stiff.
4 months later, January 2018, we found out about Finley’s third heart condition. If you’re keeping track, Finley has a Small Supracristal VSD, Mild Pulmonary Valve Stenosis and now a Small PFO. These murmurs has, at this point, allowed Finley to have a normal activity level and had not affected him hitting his appropriate milestones. Fortunately, the murmurs had not gotten any larger, but they also hadn’t shrunk in size. We were told to “plan” for Finley to have surgery to close the Small Restrictive Supracristal VSD prior to his 1st birthday. Leaving this appointment, we were feeling thankful that we were able to celebrate 6 months without enduring surgery like we had originally thought, we were feeling like it was a waiting game- waiting for the other shoe to drop.
** A Small Patent Foramen Ovale (PFO) is a small, flap-like opening in the wall between the right and left upper chambers of the heart. It usually causes no signs or symptoms and rarely requires treatment. Generally, a patent foramen ovale (PFO) doesn't cause complications.
6 months later, our prayers had been answered and the open-heart surgery that we were “planning” to schedule was put on the backburner. The cardiologist determined that the Small Supracristal VSD was not affecting his Aortic Valve and had not increased in size. Since Finley was continuing to progress and stay ahead of his milestones- ultimately the murmur was not affecting his everyday life, so we were sent to treat Finley as a normal child and again, wait.
January 2019, the cardiologist suggested that the VSD may have gotten smaller since he was last seen, 6 months prior. The VSD was slightly disturbing the flow across the pulmonary valve- we were not in the clear, but we were not planning surgery, so we were grateful. We were told to watch for Finley struggling to breathe when playing, being lethargic, wheezing and struggling to breathe in everyday life. But he was to be treated as a normal child and life was good- just kept an extra close eye on our sweet baby.
In December 2019, we met for the last time, with a cardiologist from the Children’s Hospital at Colorado Springs. We were meeting with a new doctor, as Finley’s previous cardiologist had retired. Dr. Runciman determined that there was no need for restriction from a cardiac standpoint. He did not have any other information to share as far as progress or concern, so that was something we were grateful for. We were confident that in a year, when Finley had his next follow-up, this time in Florida, we would receive the same report.
January 2021, we received the news we had been praying we’d never get the opportunity to hear. Finley’s cardiologist determined that his Aortic Valve was showing signs of being warped due to his Small Restrictive Supracristal Ventricular Septal Defect. Dr. English reported “The non-coronary leaflet of the aortic valve sags slightly in diastole but there is no significant aortic valve insufficiency. Due to the location of the defect and possible involvement of the Aortic Valve, we are going to discuss his case with our colleagues on Thursday for their input about surgical repair. The argument for proceeding with repair now is that we would be preventing further undermining of the Aortic Valve annulus by this defect, potentially sparing him from more significant aortic valve insufficiency. There is no need for SBE prophylaxis or activity restrictions.” At this appointment, we did an ECG that showed normal sinus rhythm as well as an Echocardiogram. The echo reported, “Supracristal VSD shunting left to right with a gradient of approximately 100 mmHg. The non-coronary leaflet of the aortic valve sags slightly in diastole but there is no significant aortic valve insufficiency. Mild turbulence across the pulmonary valve. Normal biventricular systolic function. No left sided chamber enlargement” Dr. English, Finley’s cardiologist, took Finley’s case to the Board of Pediatric Cardiologists, for the University of Florida, to discuss the best plan of action. He was confident that they’d agree that closing the hole would be most effective in preventing further damage. Following the board meeting, Dr. English took his findings to the Board of Surgeons.
The beginning of March 2021, we met with Finley’s surgeon, who is a part of Wolfson Children’s Hospital, in Jacksonville, FL. The surgeon gave us his perspective regarding the surgical repair of Finley’s Small Restrictive Supracristal Ventricular Septal Defect. Dr. Harma Turbendian, who ironically trained in Denver, expressed concerns that Finley’s Aortic Valve was prolapsing and possibly leaking. Dr. Turbendian and Dr. English, both, were unsure if the leaking was something new or not but if it is not addressed sooner than later, it would worsen. He suggested that our Colorado Springs cardiologist was taking a more conservative route, in essence waiting for things to get to the point where there was no doubt that Finley’s VSD needed to be closed and that there was underlying damage that needed to be addressed, and Dr. English, the cardiologist we were now seeing in Florida, is more aggressive as far as wanting to nip it in the bud before the chance of the valve prolapsing, even more, occurs. From a surgical perspective, if Finley’s VSD was located anywhere else within the heart, we would not be meeting to talk about surgery, but because of the location and the prolapsing of the valve, surgery is imminent. He said that within 1 to 2 years, there could be a possibility of no change in the size of the hole itself, but the potential for the severity of the warping of the valve, increasing, was unknown and thus, concerning. He said that if we were to wait even 5 years, we would be looking at replacing or repairing Finley’s Aortic Valve. There was no question as to whether Finley “needs” surgery, it was just a matter of when. There is no minimally invasive way to go about this procedure.
To get access to Finley’s heart, they will make an incision down the middle of his chest and separate his breastbone (a sternotomy). Finley will be attached to a heart-lung machine that will act as his heart and lungs during the procedure. Once the procedure is completed, the heart- lung machine will be removed, and Finley’s breastbone will be put back together with wires.
From a surgical standpoint, we were told that, Finley would be in the operating room for upwards of 6 hours (the surgeon declared that there would probably only be 3-4 hours of actual “cutting” time but there is a lot of pre-surgical protocol taken in the operating room and after the completion of the surgery- including restarting Finley’s heart after repairing the hole, while still attached to the heart and lung machine, and then removing the machine when they are confident his heart and lungs are fully operating on their own, and then “closing” him back up.)
Because of COVID, we would be unable to be with Finley right after surgery, and during the first part of his recovery in the ICU. Because of COVID, he was only “allowed” one parent to stay overnight in the hospital with him. Because of COVID, Finley was only allowed to have his two parents with him during his hospital stay, which includes the time that Hally has to return to work. In addition to COVID factors, we had Hudson, who is currently nursing and is not allowed in the hospital for any part of the day of surgery or the 5 days that follow, as Finley recovers. And selfishly, the out-of-pocket nightmare that Hally and I were facing (having to come up with a minimum of $35,000 for Finley’s surgery… just the surgery, not the doctor fees, anesthesia, follow-up care, and medications to follow) was looming.
We followed-up with Finley’s cardiologist and discussed our concerns. Dr. English advised that we do not exceed more than 6 months before scheduling Finley’s surgery. He was very concerned about the Aortic Valve and didn’t want to risk more damage. Finley was scheduled for a follow-up in July and Dr. English advised, that if there was any sign of “more” warping to the valve or damage to the valve, that we will be scheduling surgery the same day. If the valve is comparable to the imaging, that they took earlier this year, then we will schedule another follow-up in the Fall and ultimately schedule surgery at that appointment.
At this time, we were praying and talking to anyone and everyone who could help us navigate finding new insurance, praying that the COVID protocols would be alleviated, some, and selfishly, praying that both Hally and I could be there with Finley when he woke up from surgery and in recovery.
Finley had an Echocardiogram and EKG done again on July 9th, 2021, and both the Echocardiogram and EKG clearly identified the need to move forward with surgery. We scheduled Finley’s open-heart surgery for August, Wednesday, August 18th, 2021.
Finley took his first ever, COVID test 4 days before surgery.
The day before surgery, Finley was scheduled for his pre-op. He had a physical exam, a chest x-ray, an insane amount of blood work and we had the opportunity to meet members of his surgical team. Because of COVID, Hally, Finelys dad, was not allowed to accompany us to his pre-op appointment, but we were able to include him via FaceTime for the meeting with Finley’s anesthesiologist, which was a huge weight lifted off our shoulders. Finley handled the whole appointment, that lasted several hours very well! The hardest of all, was the blood work, but he showed his bravery and resilience and was set for surgery the following day.
Wednesday, August 18, 2021
Arrival Date/Time: 8/18/2021 11:07 AM
Patch Repair of Ventricular Septal Defect
When Finley and I arrived, we were taken back and met with the head nurse. She had Finley change into his hospital gown and also put Finley’s “Puppy RoRo” in a matching gown. The hospital had a children’s advocate come and she talked with Finley about what was about to happen, she told Finley she would be there with him every step of the way and even gave him a special toy to cheer him up. She asked Finley if he knew why he was there and what was going to happen, Finley was sharp in his responses and shocked the advocate with his understanding and knowledge. The anesthesiologist assistant came and asked Finley what flavor mask he’d like, Finley was excited when she told him that there is a special green balloon that he has to try to blow up so so big and see if he can get it to pop (it was such a cool way to inform kids of how going under anesthesia is done and to help with the underlying nervousness). After they took Finley back, I was asked if I needed to see the chaplain, I had been crying, once they took Finley back, but how could you not!! I was devastated seeing him go back there into the unknown and to be honest I was so scared, I didn’t need a chaplain, I needed my husband, who was in the parking garage waiting. We were told we would see Finley in 7 hours and 45 minutes, that a nurse would contact us when he “went under”, when they did the first cut, when they took him off the heart & lung machine and when they were closing him up.
Following surgery, Finley was placed in the Pediatric Cardiovascular ICU. Both the surgeon and the anesthesiologist raved about how brave he was and his silly disposition. The surgeon informed me that he did not need to give Finn extra blood, that the breathing tube was out- which he was unsure would happen right away, and that the surgery could not have gone any better. When I went back to see him, he was still on such heavy meds that he was in and out. Finley asked to get out of the bed multiple times and asked for chicken nuggets and french fries, and did not pass up the opportunity to have his dad purchase the Optimus Primal toy he’d been eyeing. The goal was for Finley to rest the day away. Because he was only allowed one visitor at a time, Hally and I switched off in the afternoon and I was to return the following morning.
The first day, following surgery, Finley worked with the occupational therapist and even sat up in the bed! They were thrilled when he stood up to get weighed and even moved from the bed and sat in a chair. Finley was nervous about the IV’s that were in both his hands but was so brave when working with the therapist. Finley was much more alert and enjoyed the endless movie options he had to watch as he rested. The proceeding days, Finley had his drainage tubes removed, went to the bathroom, was eating, and even did multiple scavenger hunts through the ward as he worked up his strength again.
August 21, 2021
Patient Discharge Discharge Diagnosis: Status post patch closure of VSD
Finley was discharged from the hospital on August 21st, and was set to recover, at home, for the next 6 weeks and was on the mend for recovery! Finley was carted down from the Pediatric Cardiovascular ICU to our car in a little red wagon and looked so good! It was such an exciting way to leave and made him feel even more energized about getting home.
August 31, 2021
Follow up with Dr. Shillingford, CV Surgery, on Tuesday August 31 @ 9am
Please have chest x-ray completed prior to appointment-
Finley had his first official post op at his surgeon’s office, the PA was happy to hear that our wild boy was “back to himself” and back to his “normal” activity level. Finley was hopeful he’d be cleared to get back to school and off the dreaded diuretic. Unfortunately, he was told to keep up the resilience and by the time he had his next post op, with his favorite cardiologist, Dr. Robert, he’ll get that news! Our sweet boy was to continue to take it easy for a little bit longer and his sternum should be completely healed in about 4 weeks!
Finley really had outstanding nurses and the most amazing care team while he was in the hospital- the nurses, physical therapists, kid care advocates, ICU doctors, etc. embodied a care team full of wisdom, compassion, and kindness. To work with children, in an environment that is often times scary and full of uncomfortable and sometimes painful scenarios, take such a special person and there are no words to describe how thankful both Hally and I were that Finley received the care he did! I truly believe that he had been so successful in his recovery because of the wonderful nurses and staff that took care of him while he was in the hospital for those four, long, days!
Finley wanted to show his appreciation to the wonderful staff of the Pediatric Cardiovascular ICU Unit, by bringing them a yummy treat!! Hally and I are forever grateful for the staff at Wolfsons Children’s Hospital for taking care of our precious boy!!
Finley's secondary post op was scheduled for the second week of September, there he saw his cardiologist, Dr. Robert. Finley was feeling pretty nervous, but the PA commemorated him by saying that most kids that endure surgery, let alone open-heart surgery, experience a little bit of PTSD when they return. During his visit, they did an EKG and an Echocardiogram. Dr. Robert was very happy with Finn’s recovery and was thrilled to hear how well he has been doing at home!! Dr. Robert was pleased with his chest incision and drainage tube holes, that looked more like closed scabs at this point. Finley was happy to finally be released, to return to school, and to take a nice warm bath. It appeared at this appointment, that Finn was a little anemic, but we were confident that it would dissipate as he continued to recover.
Finley's next post-op appointment is in May of this year and it is so surreal to think we are almost a year after his life changing surgery. I am excited to hear what Dr. English has to say and I am so happy with how well Finley has been doing, but I cannot help but feel nervous that the appointment will be an appointment we leave in tears as we had in March 2021. Call it, PTSD, but man it is so nerve-racking knowing that everything you "think" could happen, could do a 180 and change the course of your life.
“ᴄᴏᴜʀᴀɢᴇ ɪꜱ ɴᴏᴛ ᴛʜᴇ ᴀʙꜱᴇɴᴄᴇ ᴏꜰ ꜰᴇᴀʀ, ʙᴜᴛ ᴛʜᴇ ᴛʀɪᴜᴍᴘʜ ᴏᴠᴇʀ ɪᴛ. ᴛʜᴇ ʙʀᴀᴠᴇ ᴍᴀɴ ɪꜱ ɴᴏᴛ ʜᴇ ᴡʜᴏ ᴅᴏᴇꜱ ɴᴏᴛ ꜰᴇᴇʟ ᴀꜰʀᴀɪᴅ, ʙᴜᴛ ʜᴇ ᴡʜᴏ ᴄᴏɴQᴜᴇʀꜱ ᴛʜᴀᴛ ꜰᴇᴀʀ.” — ɴᴇʟꜱᴏɴ ᴍᴀɴᴅᴇʟᴀ
•Resilience• has a new meaning in our home.
Finley Michael has taken his open heart surgery and made it his, you know what!
This brave boy has endured so much over the last year and I couldn’t be more proud of how he has turned something so awful and so scary and transformed it into the biggest learning lesson.. not just for him, but for US!
He has taught us what it means to be •strong• not just physically, but in the words entirety. Finley has faced a lot of scary things and with each encounter, he has overcame and made triumphs of each circumstance- whether that be, when he was being wheeled into an operating room and going under anesthesia or sitting up in his hospital bed for the first time the next day, walking across his hospital room floor or the scavenger hunts for his hot wheel cars scattered through out the Cardiovascular ICU corridor… oftentimes, it is easy to show up when you know things will go well, but when you’re faced with so much uncertainty, uncertainty of what he will feel or if he was even ready- Finley was always up for the challenge. Sure, there was some analysis prior to each scenario, but he was not down for long. Finley’s recovery has been without excuses on his behalf (minus the diuretic he takes twice a day ), without any self sabotage and has in turn, been filled with his infectious giggle and silly remarks!
This boy still has obstacles to overcome, but I am confident that as he faces each future obstacle, he will continue to not only show up, but to kill it, and then move onto the next!
Thank you for the continued prayers and friendship!! We continue to be amazed by all the wonderful people in our lives and are so humbled!!
XO: Kelleen
A brave, strong boy, with brave, strong and loving parents and family!! Love you, Finley Michael Scott Miller!!