Our Million Dollar Baby

This week marks the Fourth Anniversary of Braden’s second and final open heart surgery. I thought it would be good to write down my thoughts as I look back on this miracle child of mine. For those who don’t know the story here it is in as brief as I can --after all I am quite a talker. For those who were there with us every step, every doctor appointment, every ounce of weight gain, we still thank you from the bottom of our hearts. The first year of his life was full of ups and downs but I know Heavenly Father had a plan for him, as well as our family and we are so grateful for the outcome we were blessed with…

October 4, 2002. After a normal pregnancy, labor and delivery Rusty and I welcomed our first baby, Braden Russell. He was 7 lbs 3 oz and cute as a button. After a few hours of meeting all his new family he was taken to the nursery for shots and the normal newborn testing. Around 1 pm, nearly four hours after I had him, Rusty came in to my recovery room to tell me they thought something was wrong with his heart. Fast forward 9 hours later when he was Air Evaced to Phoenix Children’s Hospital NICU. He spent 8 days there being closely monitored and tested. He was ultimately diagnosed with Double Outlet Right Ventricle with Transposition of the Great Vessels. He also had 2 holes in his heart, a VSD and an ASD as well as a bad Mitral Valve--- (Trying saying that five times fast, or anytime anyone asked you what was wrong… )In other words his heart looked like this. It was not caused by our DNA, instead when the cells were dividing to create the heart it was just formed wrong.

The next few months involved visiting a Pediatric Cardiologist and our Pediatrician several times a week. Braden went into heart failure at 2 months old and spend his first Christmas in the PICU. After a successful cardiac cath procedure he was put on a feeding tube and we were able to get him stable enough to wait for surgery in February 2003. We made the decision to travel to California for surgery. We, as a collective family-mine and Rusty’s- decided we felt better about the program at Stanford than the one here. We also had heard great things about our surgeon Dr. Frank Hanley and his program there. Braden’s defect was rare, so the surgeon here had never preformed a full repair like what he needed before. Dr Hanley had done 6 surgeries similar to B’s.

The first week of February Rusty, Braden & I, as well as Russ & Cindi flew to California. Braden was 4 months old. His first surgery went great. It was the longest 10 hours of my life. We walked a lot of hospital halls that day. I don't remember a lot, thankfully but I do remember the 2 hardest moments of my life that occurred that day. First, was hugging my sweet baby bye and handing him to a nurse to go into the OR. Second, was seeing him directly after he was done. He was swollen; covered in bruises, wires and tubes and hooked up to so many medicines he needed multiple IV’s.

We had many ups and downs over the 14 day stay. We owe so much to the staff at the CVICU at Lucille Packard Children’s Hospital at Stanford. They literally saved our son’s life. Each day a few more medicines were turned off, a few more wires, lines bandages were removed. On Valentines Day he was finally taken off the breathing machine and I got to hold him (SEVEN long days since that hug). He got addicted to all the pain meds, and had to detox. Watching him go into withdrawal was so hard. I have the youngest recovered drug addict you have ever met I’ll bet.

There were also some good times. He laughed for the first time ever on Rusty’s birthday and we got to escape the confines of the CVICU (while he was heavily medicated) and spend some time in San Francisco. My parents and the Robison’s were also frequent visitors. He cut several teeth on morphine, which was nice. We were able to walk the halls in a red wagon and meet other parents who gave us support. We were so excited to head home when we were discharged, confident we had a brand new baby on our hands.

Unfortunately, after a brief time the repair to his Mitral valve did not hold up and we were scheduled to do anther surgery on it in August of 2003 at 10 months old. Again, we tried all we could to get him to gain weight and luckily he did, so we did not have to use the feeding tube any longer. August came much too fast --but this time we knew the drill. The pre-op day seemed to go quicker and we knew our way around Palo Alto by then. The second surgery was to focus on just repairing his Mitral valve, which was ‘leaking’ and causing him to go into heart failure again.

The second time we hugged him at the OR doors was easier only because they had given him a medicine that made him oblivious to his surroundings. He didn’t want to hug us; he wanted to play with the cord taped to his leg. When the nurses pushed the button to open the series of double doors that led to the OR Braden made an “Oooooooh” sound, he must have thought where he was going looked cool? This time the surgery only lasted four hours and we were moved from the CVICU the next day after his ventilator was removed. By late on the second day after surgery he was sitting up in his crib playing and looking at books. It was amazing. They say kids heal quickly, but when just four days after surgery they sent in the team that prepped you for home life, we were shocked! We were not going to fight the idea though and even surprised Rusty’s Mom at the hotel when we came in with him in tow.

Currently, Braden only has to see the pediatrician as often as any other child would and our cardiologist visits are now just once a year. Each visit involves checking his blood pressure, oxygen levels, doing an EKG and Echo and a few other things. He loves his Dr- mostly because he knows going there involves NO pain in any way- and he gets to take his stethoscope and listen to the doctor’s heart. Although they can't tell us that he'll never need another surgery, they are confidant that the repairs will hold as he grows.

“Modern medicine can fix anything, so hold your baby and stop crying.” Those were the words of my pediatrician on the day he was born. Although she was (is) abrupt about it, she was right. We live in a wonderfully modern society, and Braden was born into our lives to teach us patience, faith and the value of family and we am so grateful for him. Mostly, I am grateful that looking back on these pictures it really seems like it happened to someone else. Braden has no limits as far as sports or anything goes. We have to remind ourselves that he is a ‘normal’ kid now and we try to treat him that way. His “zipper” (the scar from the surgeries) is nearly invisible, you really have to look close to even see it and he will show anyone who asks to see it with great pride- - because he sure did earn it. Whenever he is super stubborn and hard headed I have to remind myself he had to be that way as a baby, so I shouldn't hold it against him now--- but man can he be opinionated!!!

Well that’s his story, as simple as I could tell it at least…the pictures in the montage are just a few of probably hundreds we have from that time, but these are the ones that affect me the most. Just a warning, there are post op pictures in it.

Photo and video editing at www.OneTrueMedia.com