On June 2nd, 2014, our baby Brent was diagnosed with a very rare congenital heart defect called Double Inlet Left Ventricle (DILV). This is our story...
Most of our updates on Brent over the past couple of weeks have been via his Facebook page called Brent's Special Heart. We have found that most of our family and friends are on Facebook and it's quicker and easier to update. However, I will continue to update this blog because not all of our friends and family are on Facebook. Also, when we first learned of Brent's diagnosis, I found a few blogs that parents had been updating for their kids with DILV. These were very valuable to us, and I hope that our blog will be a source of information, inspiration, and comfort to other families on their heart journey as well.
Brent spent the first 3 days in the NICU at St. Paul hospital in Dallas. Overall, his first few days were very positive. He had a lot tests and labs and was closely monitored, but he was eating well, stable, and exceeding expectations despite being born 4 weeks early and dealing with a complex heart defect.
Transport team for Children's
After 2.5 days at St. Paul, he was transferred to Children's Medical in Dallas - one of the top pediatric heart hospitals in the country. Over the next several days, Children's monitored him, ran additional tests including echos and ultrasounds, lab work, etc. The goal during this time was for him to gain weight, remain stabilized, and for his doctors and surgical team to come up with a plan for his initial surgeries. Like his first couple of days at St. Paul, Brent continued to do pretty good overall for a few days at Children's as well.
Brent's Room in the ICU
After approximately 7 days, Brent began to have labored breathing and increased heart rate. The doctors warned us this would occur, yet it was still difficult to watch. Without being overly technical, infant's bodies undergo significant changes in the first few days after birth as they adjust from fetal circulation to normal circulation. As Brent underwent these changes, the impact of his heart condition got more and more pronounced. We knew he would be having surgery soon, we just weren't sure when exactly. The doctors wanted him to gain weight as he was small due to being born early, but he stayed about the same weight for over a week. He had dropped half a pound to about 5lbs, 6oz since being born, and we really couldn't get him to gain weight - and it was a chore for him to even sustain the weight he was at.
This picture is from the night before Brent's surgery. Although I was lucky to catch a brief smile from him when taking the pic, it was a very difficult night for him. His breathing was very labored, his heart rate was too high, and he wasn't allowed to eat after midnight. The only time he was happy on this night (September 11th ironically enough) was when dad was holding him. So, I stayed up most of the night holding him and comforting him as much as I could, knowing that surgery was soon. In fact, his heart surgery was scheduled for 7:30am on Friday, September 12th. Although my wife and I were very anxious and nervous, we knew that he needed the surgery. Our little boy was very sick, and getting sicker by the day.
Facebook updates (After Surgery) coming up in the next post...
Mommy with her little man a couple of days before surgery
Grace: Dave and I have been waiting for this day it seems like forever. Ever since we received our child's diagnosis, we couldn't wait to visit the two hospitals where we thought we wanted Brent to be delivered and have his open heart surgeries. First, we thought about choosing surgeons. Dr. Joseph Forbess was featured as one of the best up and coming heart surgeon doctors in the book my husband was reading, Walk on Water: The Miracle of Saving Children's Lives, and he now practices at the Children's Medical Center of Dallas (CMC). Next, just in case my baby must have surgery immediately, we decided that we wanted me to deliver the baby at a hospital near the CMC. I would hate the thought of being far away in a hospital recovering while my newborn was miles and miles away being worked on. So, although I had carefully chosen my OB before we knew of Brent's diagnosis and had planned to deliver at The Medical Center of Plano, we chose to look at UT Southwestern Medical Center (formerly St. Paul University Hospital), which was only a block away from CMC. There was another hospital right next to CMC, but another pro to choosing St. Paul/UT Southwestern was that it had a level 3 NICU, which our delicate baby might need.
Our first stop was at Children's Medical Center of Dallas where I was scheduled to have an hour and a half long echocardiogram where they looked at Brent's heart from various views and attempted to identify the parts of the heart and abnormalities. The staff was nice and I kept hearing from the two sonogram technicians and the two cardiologists, Dr. Catherine Ikemba and Dr. Matthew Lemler, who reviewed the ECHO, "That's beautiful. Brent takes beautiful pictures," with smiles and nods of affirmation. They must not get too many good echocardiograms for them to be saying that. But even with the good pictures, the diagnosis would still not be 100% complete. Apparently, even with the best echocardiograms, doctors are not entirely sure until they actually go in. The consultation between us and the cardiologists seemed surreal. Because we had researched as much as we could before this meeting, we weren't shocked by any information we were hearing. So, some things had changed, which Dave will provide in detail below. After hearing from other parents, I had a few questions of my own that dealt with preparing for Brent's arrival:
One of the questions I had for the cardiologists was, "Because
heart babies are more susceptible when exposed to respiratory viruses that lead to
infection of the lung and breathing passages between birth and the 4-6 month
surgery, should we keep our toddler home from places
that are breeding grounds for colds?" (Our toddler Bryce was constantly
sick last year, and I had thought I would keep him home from church and Mother's Day Out because he might spread the virus to me, and I might spread it to the baby). His reply was that he would try
to keep life as normal as possible since our lives would already be turned
upside down from Brent's condition. So, that is something Dave and I will
consider.
Another question I had was regarding an oxygen tank. We had read that some babies and toddlers had to be on oxygen if their levels were too low. I had planned on
getting a lightweight stroller frame (around 15 lbs.) where the infant seat can
attach to the stroller since our other stroller was bulky and heavy to get in
and out of the car. The doctor's reply to the question of whether or not
the baby will be sent home with an oxygen tank was, "Possibly."
So, because there is a possibility, it looks like we will go with the heavy-duty
infant carrier/stroller like this one.
At the meeting we also learned that we will probably participate in the
"Safe at Home" program. Basically, the time between the first
and second surgeries, the blood flow between the the body and lungs is "delicately
balanced". Changes may mean that the baby is experiencing heart
problems and will need immediate attention (or surgery earlier), so we will
need weekly visits from a nurse practitioner to check up on us, which I know I will appreciate. I remember when my first baby was born, I was actually really scared to bring him home because I wasn't sure if I would do everything right (he was born 2 months early). And I think I'll feel the same way having a special needs child. I want to do right by him! We'll be sent home with a
scale (to monitor the baby's weight) and a pulse oximeter (to monitor oxygen
saturation levels) and be followed closely by the pediatric cardiologist.
So, we approached this meeting determined to attack our situation head on, wanting to be ready and plan for the future, but in the back of our minds we understood the gravity of Brent's diagnosis. At any moment, something could go wrong, and we were resolved to plan for the worst and hope for the best.
David: One of the specific prayer items we have asked people to pray for since the beginning is the growth and development of Brent's aorta. This is one of things they were especially looking at during the echocardiogram on Wednesday. Unfortunately, we got mixed news on this front. Some of the images they took of Brent's heart indicate he has coarctation of the aorta, while other images seem to suggest he does not. This brief YouTube video does a good job of describing what a coarctation is.
Whether or not Brent has this coarctation makes a significant difference in what the first few days and months of his life will look like. As the cardiologist stated at the office "It's a game changer". In essence, it will likely mean the difference in him needing open heart surgery within the first few days of being born versus his first surgery being the Glenn at 4-6 months of age. Having his first open heart surgery at 4-6 months may not sound like much difference, but it gives babies time to get bigger and learn some developmental milestones such as eating. Also, the first surgery is just a riskier and more complicated surgery in general, so please continue to pray for the development of his aorta so that we can avoid this first surgery!
We also learned that Brent has tricuspid valve straddling and atrial septal defect (ASD). I'm not sure what this means at this point, but it doesn't sound like it is going to change the course of the open heart surgeries he is going to have. So, unless it changes any further, his current diagnosis is:
Double inlet, left ventricle
Ventricular septal defect
Atrial septal defect
Transposition of the great arteries
Tricuspid valve straddling
Possible: coarctation of the aorta
Any one of these by itself could be cause for heart surgery. For example, I have a coworker whose daughter had to have open heart surgery to fix a ventricular septal defect. When I think about the complexity of my son's heart and the surgeries he will face, it's overwhelming to contemplate. We did receive a lot of comfort and confidence though from our visit. Although we haven't met the surgeon yet (that visit is being scheduled), we met several members of the Children's team who will be helping us, toured the facility, and we got to meet Grace's new OBGYN who will be doing her delivery. Everything was top notched - you can definitely tell why the hospital is ranked so highly. We have no doubt Brent will be in excellent hands, and are eagerly anticipating our visit with the man who will be hopefully saving his precious life - Dr. Joseph Forbess. Everything we are able to research about this doctor indicates he is one of the top in his field, and we are looking forward to hearing from him about his thoughts on Brent's surgeries and prognosis.
Please continue to keep Brent in your prayers. We covet them and will need them in the days, weeks, and months ahead!
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