About Justin Dunn

Justin is our first baby, and we did not learn of his heart problems until after he was born. We had a great pregnancy, no problems, and I walked miles per day right up to the day before he was born. He arrived 2 hrs after I got to the hospital, no meds, and a 2nd degree tear. Picture perfect pregnancy and delivery! We got to hold him in the recovery room during the first hour, and that is a very precious memory to me. It's the one bright memory I have before things crashed around us. I tried breastfeeding after delivery, but Justin wasn't interested (now we know why). Toby and the nurses took him to bathe, weigh, etc. My in-laws had driven the 2-3 hrs to get there, arrived after he was born, and got to hold him in the recovery room. Then they headed home, planning for Mom Dunn to return in a few days to stay the week with me. We made all the phone calls on our list to announce his birth, not knowing yet that anything was wrong.

This was a Sunday, and Justin was born at 5:10 pm. There was a waiting room full of people from our church who were waiting for news of his arrival but had to leave by 5:30 to make the 6:00 evening church service. Of course, they announced his arrival at church, and EVERYONE came by the hospital afterward to see the baby. During that time, they stitched me up, moved me to a room, and had Justin in the nursery. Toby was in and out giving me info about weight, etc., and then people started arriving to visit. There were about 10 people in my room when the nurse came in and said that there seemed to be a problem with the baby, they were calling in a 2nd opinion pediatrician, and my family dr. would be coming back in to talk to me. One of the ladies from church told me later that I was just so calm, nodding and saying "ok". I look back on it and I can't think of anything at that point that made me feel like I shouldn't be calm. I just really didn't expect anything major. He had looked fine. I wasn't that worried. And until I knew more, I just don't think I knew what to think.

A lot more people from our church were over at the nursery trying to get a peek at him, but they had him in the NICU area, which had the blinds closed, so some of the college-age kids were finding places to peek through the cracks of the blinds to see him. The nurse cleared my room and I really didn't understand why. I was in an after-glow and basking in my moment LOL. Well, the nurse kept saying that if I wanted she could post a sign for no visitors and I kept telling her I was fine with visitors. But she put one up anyway. I just really didn’t understand.

My doctor came in and said they were waiting for the pediatrician to get out of surgery, but they had diagnosed a heart murmur along with a low O2 level. He said if it had been one or the other, they wouldn't have been too concerned, but with both they needed to check his heart. They expected a valve problem, but our town does not have pediatric ANYTHING, so he would have to go to Texas Children's in Houston to have an echocardiogram to diagnose what was going on. He just wanted a 2nd opinion before calling the transport team.

They let me go over and see Justin in NICU, and I stayed there over an hour, talking to him and stroking his hair. The pediatrician came and told us basically the same thing, and that the transport team was already on the way. I went back to my room, and they brought Justin by in the transport unit for me to say goodbye, and then they flew him to Houston through a thunderstorm. Toby and my brother-in-law drove to meet him there, and I managed to get a few hours of sleep.

Toby called around 7 am and said they had the diagnosis and that they would be doing a cath procedure the next day to open the valve. At that point I still did not understand any of this, but it sounded like a “routine” kind of thing…the valve was closed, they would open it, end of story. My doctor talked to me again and released me when he made his rounds that morning. He said that he had gotten the report and that just 10 years before, they would not have been able to do anything for him and that my baby would have died.

My sister drove me to Houston. I got to NICU after having a hard time figuring out where to go (I'd never even been in an ICU before), and by the time I called back in for them to send Toby out to get me to show me what to do, I was in tears. Then I was told the cardiologist wanted to be called as soon as I was there to talk to us. So, I’m standing there by my baby’s bed in NICU, crying because I can’t even manage a simple task like finding my baby, and this very brusque, matter-of-fact dr. comes and tries to talk to us. She starts talking about things I’ve never heard of. He was going to need some kind of “shunt” and she didn’t expect this cath to help at all, and that we should be prepared for him to be in surgery by Friday. I cried the whole time and she didn’t do anything to try to explain anything or make me feel that I wasn’t a basketcase. In fact, that particular doctor managed to treat me that way for the entire time we were there, and we named her “Dr. Doom.”

I spent the next day trying to get milk started and getting set up with the milk bank. The people there were WONDERFUL, but I got very little sleep between trying to pump milk, trying to be at Justin’s bed, going to the bathroom to take care of my own stitches, going to the waiting room to check for visitors, who we would then take one at a time into see Justin. I walked myself nearly to death, since all of those things were on different hallways.

We also spent that day waiting for Justin to be taken into the cath lab. He was finally taken around 4 pm. The team was fantastic, assuring us that this was something they all did all the time, but being very understanding that it is not MY baby all the time. They gave us the beeper, and said they would page us when the 1st balloon was done, and they hoped to not have to do a 2nd balloon. There were tons of family/friends in the waiting room, talking about everything in the world EXCEPT my baby who was having his heart worked on. I wanted to scream at them to all just leave since they weren’t there to really support ME. I ended up going to the milk bank with Toby, hoping to have some time to just talk to him, but he spent the whole time setting up for me to have a portable pump to take at night so I wouldn’t have to be up there to pump (we were staying with friends, so we were leaving the hospital at night).

When I went back to the waiting area, I noticed that I had started swelling a lot, and when I went to the phone when they paged us, my entire feet and legs just ballooned up, and I had to go lie down with my feet up. I was really scared that I was going to end up in the hospital, and I was surrounded by medical staff and I didn’t know who I could even talk to about it. It was a horrible moment.

Justin had two balloons done. The 1st, 11 mm, had no effect on his valve, but the 2nd, 12 mm, popped it open, and they noticed better definition to his ventricle immediately. They then used a device to occlude his PDA, to see how he would tolerate its closure, and his O2 dropped to 60 (on oxygen), so they used another balloon to enlarge his PFO (make an ASD) to allow a “pop-off” from the overloaded right side of the heart. I met Dr. Grifka for the 1st time as they brought Justin out and let us see him for a few seconds on the way back to NICU. He said he wished all the caths went as well so far as blood pressure, stabilization, etc., so he was very happy. He gave us pictures of the valve and blood flow before and after, and a diagram. That was the first I really heard of the small right ventricle, and I didn’t understand how critical that part was. Not knowing any better, I was just focused on the valve.

Through that week, they monitored Justin closely. He had a lot of swelling the next day, and I had my real breakdown that night. I cried for hours in the bathroom.

We had a very confusing time because we didn’t understand the “team” concept of the doctors working on his case. I never saw Dr. Grifka again, but the two cards we did see gave us VERY differing outlooks every time we saw them. “Dr. Doom” continued to tell us Justin would be in surgery by Friday, while the other doctor was kind, hopeful, optimistic. She really thought he was doing great. And we would literally be given those different opinions within minutes of each other. At one point I looked at the nurse for help because she saw what we were being told. She was really helpful and explained that one (“Dr. Doom”) was the attending, and the other doctor was a fellow and that drs do tend to have very different personalities that affect their outlook. She also got a diagram of a heart and showed me the basic blood flow stuff that no one had taken the time to show me. I really think what was happening was that Toby had met with Dr. Grifka before I arrived there, who had explained a lot that went over his head, and they were assuming we understood what we needed to know (or maybe they knew that there was no way for us to understand at that point). Also, every person who talked to us assumed that we had known before birth, so I don’t think they realized just how much we NEEDED explained. We just didn’t even know what to ask. It was a horrible week.

Justin did not go into surgery by Friday, and in fact he was taken off the respirator that day and started eating glucose bottles on Saturday. We got to hold him that day, and by Monday, they were talking about moving him to a room. On Tuesday they started us breastfeeding, and moved us to a room. We stayed that night, got instruction on what to watch for, how to care for him, and were sent home on Wednesday at 10 days old.

We had frequent follow-ups at first, and his right ventricle continued to grow. It was at the first follow-up with Dr. Grifka that I began to understand everything. He drew pictures on the board and talked about the one-ventricle route that we were trying to avoid. He said he had very narrowly avoided going down that road, and that if he had needed the shunt before going home, it would have taken away his one chance to have his ventricle grow enough to have two functioning ventricles. We finally understood what had been going on with the differing drs opinions. Apparently he and the “fellow” had been the ones on the team holding out to give his ventricle a chance to grow (he said “I and Dr. Rutledge had to literally lay ourselves across his bed to keep the others from rolling him out to surgery.”). The others on the team, including “Dr. Doom” were committed to doing what was considered standard practice, and sending him to surgery. He said many drs feel better doing what they know, rather than taking a chance. He said it’s not that they are bad drs but they just are more comfortable doing surgery than seeing what happens going another route. He also said that at that time Texas Children’s was one of six hospitals in the country that had the right cath device to do what they did for Justin. Most other places, he would have had the surgery right off the bat. So, we were kind of caught in the middle of a battle between the drs in an area that wasn’t standard practice for someone with Justin’s condition.

Through that first year, we struggled with breastfeeding, but we were able to keep it going. Justin nursed every 1 to 2 hours ALL DAY. He unlatched all the time to stop and rest. He acted like he wanted to eat but then wouldn’t stay latched on and keep eating. But, thankfully, at night, he woke up to eat once and slept through at least 6 hours, so I did get some sleep. Really, at the time I didn’t realize what all I went through to keep him breastfeeding. I just did what he needed and fed on demand. I think it helped a lot that I had a really GOOD milk supply from my early pumping. When my milk let down, it CAME, and I think Justin just had to try to keep up with what was coming out on its own LOL. Then he would stop because he couldn’t drink that fast.

They kept probabilities of several surgeries near all that first year. He was surprising even the optimistic drs, and we again had a hard time understanding what to expect because he just wasn’t having the problems they expected. He was growing really well, he was breastfeeding, and his O2 levels were increasing. They thought he would still need a Glenn to help his right vent out, and they continually described a RV overhaul surgery where they would replace the pulmonary valve and scrape some of the thick wall of the right vent away to help its size. Justin just surprised everyone and didn’t need any of those.

After age 2, things have changed as far as his checkups. He is doing great, and has been on annual visits. This last year he has had lots of cold issues, been sick a lot, and to me his color still doesn’t look good. So, we still worry a lot about what we are likely to be told. We hate being on once-a-year visits. We were really used to getting regular updates, and now there is just so much time to wonder if something has changed, worry about if something needs to be worried about, etc. We call a lot more now! But we know that we have already faced the odds and won for now, so we know that we are really blessed and downright LUCKY!

Now we are expecting our 2nd baby, and we have all the worries that go with that. This pregnancy could never be the same because, even though we know we haven’t been through what so many other families actually have (just lots of it looming over our heads for a long time), our bubble of innocence has been burst. We are aware of problems that other people’s babies have, heart-related or not, and our eyes are open to a whole world that we weren’t even aware of before Justin was born. We have friends whose daughter has cystic fibrosis. We have friends whose 6-month-old was diagnosed with cancer and had an 8-inch-long and 5-inch-wide tumor removed from his abdomen (along with a kidney and several glands). We have friends whose baby had lung issues after birth and barely made it and spent 2 months in the hospital. We have friends whose baby had esophageal atresia and then had a stroke and has a shunt draining fluid from his brain, probably for years as he grows up and maybe for his entire life. He spent 3 months in the hospital. We know someone whose baby died from SIDS. And then we know heart families who have lost their children. Yes, our bubble of innocence is gone. Babies are not all born healthy, and whether they have 10 fingers and 10 toes is really not so important. It’s all just part of parenting, and as one ob/gyn said, “Anyone who isn’t willing to accept having a child with a problem, just shouldn’t have kids because the odds are there.” But I don't think most people are TAUGHT that. Until you have something hit you in the face, you just aren't aware that it doesn't always go the way you expect.

Thankfully, we have learned and grown from our experience, too. We know that going through something difficult IS trial by fire and that you DO come out stronger on the other side. We know that even college-educated people like us can be reduced to blundering idiots when they are hit with something like this, but it doesn’t mean we aren’t good parents. It just means that we are learning about something that no parent ever expects to have to learn about.

We have met people we never would have met. I never would have known what fabulous, dedicated people have devoted their lives to helping babies every day. I never would have known parents who are stronger than they ever would have thought. And I never would have known babies and children who are stronger than we ever would have wanted them to have to be. They are our strength, our inspiration, and our lives.

Hugs, tears, and much love to all the parents who find themselves on this path that they never knew existed.

Back

[ Previous | List Sites | Stat's | Next ]
This Congenital Heart Disease RingSurf
site belongs to
The Justin Dunn Congenital Heart Foundation.
Click Here To Join The CHD Webring

Next