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...
Brent had his first heart surgery on Friday, September 12th, 2014. For the surgery, they did a PDA ligation since his PDA had not completely closed as it normally does. Additionally, they did a Pulmonary Artery banding to regulate the flow of blood to his lungs. Since Brent only as a single pumping ventricle, he was pumping too much blood to his lungs, and not enough to the rest of his body. The band goes around his pulmonary artery, and restricts blood flow to the lungs since blood follows the path of least resistance. The goal was to force more blood to his body, which should help him with his labored breathing, heart rate, and weight gain.
His first day or two after surgery were largely uneventful. He slept a lot
Daddy caught a smile!
the first 24 hours or so due to sedation and the pain medicine he was on. He was moved back to the cardiovascular ICU (CVICU) for observation immediately following surgery. He was kept in the CVICU for approximately 5 days and was just transferred to the regular cardiology floor for continued observation. During this time, our family also attended CPR classes as Children's Medical Center, as they are required prior to Brent being able to come home. We feel more confident in being able to respond to a potential emergency - but hopefully will never have to use the training.
After tubes/wires removed
After 3 days in the CVICU, Brent was able to get his heart wires (temporary pacemaker wires) and chest drainage tubes removed. During the time he had these in his chest and heart, we were unable to
hold him, so we were about as anxious as he was for the tubes and wires to start coming out. Monday morning was the first opportunity we had to hold him since his surgery Friday morning, and it sure felt good!
The goal over the next several days is for Brent to remain stable with his breathing and heart rate, and especially for him to gain weight. If he can do these things, there is a good chance he could be coming home within a few days. We are very anxious as a family for him to be able to come home so that we can start living together as a family again, but want to be sure that his is stable and where he needs to be health wise for this to happen.
His next surgery, the "Glenn" will be at 4-6 months of age. This will begin the reconstruction of his heart, and means that we will be back in the hospital in a few months going through all this again. However, we are looking forward to a few weeks/months of relative normalcy in the meantime. Our little heart warrior is putting up a good fight so far, and I am so very, very proud of him!!!
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
One of the helpful and enjoyable things about Brent's pregnancy, especially after his diagnosis, was seeing it through the eyes of our 3 year old, Bryce. We got to the point where we were able to see Brent almost weekly through the ultrasounds he was having done. Bryce went to many of the appointments with us, and prior to seeing his brother on the computer screen, he used to ask us all the time "Is he real?" From his 3 year old perspective, he heard us talking about his brother, but couldn't see him, so in his mind he wondered if his brother was real. During the same ultrasound where we were waiting to figure out exactly what Brent's heart condition was, Bryce saw a 3D image of his brother for the first time. I asked him "What do you think of your brother on the big screen?" Bryce's reply was simple, but one that I'll never forget - he simply said "He's real" and smiled. That's the moment he realized he was having a real little brother, because he never asked us after that if his brother was real.
One of the things that happens when you find out your child has a life threatening condition is that your mind can sometimes run wild with all kinds of "what if" scenarios, many of which you never want to consider or think about. You wonder and worry about the future, and until they are born, you don't have your little one to wrap your arms around or their smiling face to help ground you in the moment.
The future is still uncertain and difficult to ponder at times, but we have a new source of inspiration and strength now. I've felt his tiny little hands grasp my finger, and it reminds me that he needs me to be strong. I've kissed his soft cheeks and looks into his beautiful brown eyes as he sees the world around him for the first time, and it reminds me that there is hope and wonder and love in our future, no matter how uncertain it is. I've heard his sweet cry, and it reminds me that though there will be difficult days full of tears ahead, I've been so, so, so blessed to have the privilege of being the one who will comfort him and wipe those tears away.
My little man is here! He is my warrior, my hero, my inspiration, my hope, and my strength. He is all these things, because he is real!
This past week my team at work surprised my wife and I with a baby shower for Brent. It's actually the third (and last!) baby shower my coworkers have done over the years for my wife and I at my workplace, the first occurring all the way back in 1999 just prior to the birth of our only daughter, Brooke. Each baby shower has been memorable and blessed us differently and for different reasons. This particular shower helped by giving us a moment to pause and celebrate the impending arrival of our son - something that should occur naturally and normally in a pregnancy. But this time around is different, and I'm actually grateful for it because it's creating a new reality, a life changing "new normal", that we are adjusting to more and more each day.
There is a scene in one of my favorite movies, The Matrix, where Morpheus says to Neo "I imagine that right now you're feeling a bit like Alice, tumbling down the rabbit hole". (I've included the clip from YouTube at the end of this post) It's a nice analogy for the way the past few months have felt since Brent's diagnosis with the whirlwind of OBGYN visits, Perinatologist visits, Cardiologist visits, Surgeon visits, hospital tours, endless hours reading and researching about his condition, and so on. In the clip, Morpheus goes on to give Neo a choice - take the red pill and "see how deep the rabbit hold goes" or take the blue pill and essentially go back to his old life. Well, we wouldn't have much of a movie if he took the blue pill :P
For us, our "red pill" was when we learned our baby had a rare, complex heart defect which would require multiple open heart surgeries and a lifetime of treatment, and even with that, the doctors did not know what his long term prognosis would be. Of course we did not choose this for our son, but it had the same effect as the pill in the movie- it opened our eyes to a new world - one that was always around us, but we never noticed. Our son's diagnosis caused us to see that congenital heart defects (CHDs) are the number one birth defect, impacting approximately 1% of all births, yet is grossly underfunded. It helped us learn that twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet pediatric cancer research funding is five times higher than CHD funding.
At the same time, Brent's diagnosis has introduced us to a community of families and supporters that we would likely have never met otherwise. Heart families and heart warriors (the name we give to our heart kids!) are some of the strongest, caring, and supportive people you will ever meet. His diagnosis has given us perspective and patience we didn't have before. Think of a time you saw a news story or something happened that made you hug your kids a little tighter, or spend a little more time with them randomly in the moment. Now imagine something happening to you that gave you that feeling, that perspective permanently for the rest of your life...
Even though we don't have the option of choosing the blue pill like Neo did in the movie, I can't say that I would even if I could. That would be taking us back to a life without our son. And although we don't know how deep the rabbit hole goes or what exactly or new reality will eventually end up looking like, the baby shower reminded us that Brent's life and our new normal our things worth taking time out to celebrate.
Yesterday was a very blessed day.The weather was very comfortable and cool on
Friday and we had a large turnout for our garage sale/fundraiser and sold many
items.The second day of the garage sale
we didn’t have as large a turnout, but we had people who donated to Brent’s surgeries, which really touched our
hearts!Some people in our neighborhood
saw the sign and just walked up and gave us a donation, which is a testament to the generous
people in Wylie.We were able to raise
around $500 the first day and $200 the second day, and we are still planning on
selling more items to raise even more money for the unexpected cost of Brent’s
life-saving surgeries. Dave’s sister, Tosha, is
also holding a dinner/Bingo fundraiser at the Olive Garden in Florida, and we are thankful for her taking the initiative to
do this on our behalf.I am so blessed
to have such a wonderful sister-in-law.I am also blessed with my other wonderful sister-in-law, Agnes, who
helped me organize and run our garage sale, and I also could not have done this
without donations from our church friends: Kristin, Jeanette, Jennifer, and Agnes’s
coworkers from the Olive Garden in Plano. There is an old proverb that says "Many hands make light work". This weekend was definitely evidence of how the generosity and kindness of many - coming together in many different ways - can help lighten the burden of those in need, and we will certainly be paying it forward.
During our garage sale, we met some people with sweet
special needs children, and one of our neighbors also told us of another heart
family that lived in the neighborhood.We were able to meet them and were encouraged by the story of their
daughter who actually just had the Glenn open heart surgery done and is doing
well.It is amazing who God brings into
our lives, especially at this time of need because when we first found out
about our baby’s diagnosis, we felt very much alone.We didn’t feel that many people we told
understood the gravity of having such a complex heart defect. We didn’t know ourselves (until our son’s
diagnosis) that congenital heart defects (CHD) kill
twice as many children as all forms of childhood cancers combined.Without these life-saving surgeries, most babies
with a single working heart ventricle will not live.Not too many years ago, parents of children born with this condition were simply offered "comfort care". So, it is comforting to talk with someone who
understands the gravity of the situation and who can relate to our journey.
We hope with our son’s diagnosis that we can also help to spread
awareness of congenital heart defects.When we first started this process, I could not help but think, “Why us?Why does my family and my child have to go
through this?”But then I would turn it
around and ask, “Why not us?” and see that we have a lot to be thankful
for.This is our special journey that we
are on - one that only my husband and I and our children will experience together.I use the word "special" alot-it's in the title of Brent's blog. The word "special" to me is a term of endearment-something that is precious. Despite the hardship, God cares for us, and we are
special.My son is special.I was thinking of a
verse to go with how we think of Brent and his condition, and Psalm 139:14 came
to mind.“I will give thanks to
You, for I am fearfully and wonderfully made; Wonderful are Your works, And my
soul knows it very well.”God made each of us special - special hearts and all!
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!
Yesterday, Dave and I took Bryce with us to attend a birthday party/blood drive at a church in Dallas. We were really excited because we were going to personally meet two heart parents that Dave had met online from one of the support groups we are in. There was face-painting; my three year old son Bryce liked the Batman symbol on one child's face, so we got in line. But when it was his turn, Bryce decided that he didn't want to have his face painted (I'm starting to notice a trend of us waiting in line, getting to the front, just to have Bryce change his mind). They also had a man making characters and animals out of balloons; this time Bryce waited and was rewarded with an Incredible Hulk balloon man. And they had all kinds of entertainment. The occasion was to celebrate the one year birthday and accomplishments of Miriam's one year old son, John, who was born with Hypoplastic Left Heart Syndrome. He already had two open-heart surgeries, and there were pictures with answers to prayers written on them. Dave also donated blood while we were there. This is a very good idea and a way for heart families to give back to the community.
Donate blood!
We were connected to Miriam by Deborah, another heart mom with a baby who has the same diagnosis, DILV, as Brent. These babies are proof that they can make it through open heart surgery. Dave and I listened with earnest as the moms told part of their stories-the diagnosis, treatments, looking for doctors and hospital- and it really gave us encouragement and warmed our hearts to meet them. Midway through talking with Miriam, though, I started getting teary-eyed; I didn't figure I was going to get emotional at this meeting. I'm normally not an emotional person outside the home; I can put on a brave face in public whether I am in pain or worried about a matter. I feel like I am bothering acquaintances with my problems if I wear my heart on my sleeve and share my worries, which is why I can be quite stoic at times. I can also compartmentalize, but there would be no compartmentalizing here. The realization that to get to this part of happiness where there could finally be some kind of normalcy by making babies suffer through these complex surgeries that were necessary to save their lives hit me like a ton of bricks. This will be our family soon - going through anxious times wondering if the baby will make it through the surgery without afterwards experiencing complications such as strokes or arrhythmia that could lead to cardiac arrest and death. The time is getting closer, and my desire is that the outcome will be like these two families.
Slowly these things began to process. This would soon be our reality. Dave loves to show me things he has found on the internet, and the other day he showed me the "Beads of Courage" program. It gives children "...the chance to collect a
different bead for each procedure or event while visiting the hospital
for treatment. The goal of the program is to make a necklace with colorful beads that represent the unique and special journey of a
particular child and to make something that they are proud of and want
to share with family and friends." It's a wonderful idea, and we definitely will be participating. It's something that will remind us and Brent of his journey.
Dave had found this program from another blog that we peruse through: "Living Whole Heartedly with Half a Heart" which follows another DILV boy born in April 2013. I read the blog post about the beads and then looked at the previous post on "How to change on NG tube for a 15 month old". Again, it hit me like a freight train. This was important information and it is something that we as parents may have to do to Brent. After surgery, it is difficult for heart children to eat; their little bodies get tired quickly-their hearts have to adjust to the heart being mended, blood rerouted, so they are tube fed. But the tube must be put down their nose and into the stomach, and little toddlers are very aware of what is going around them, and they are aware of what their parents are doing. Attached with the instructions was a warning: "...these are not graphic, but Jake is unhappy in them,
if you don't want to see it, skip over the picture portion of this post." I don't think I can handle looking at a child who is that unhappy. I started bawling and told Dave that I didn't think I could handle doing this to our son. Dave told me we would do what we had to; I agreed that we would have to, but what I really hope is that when the time comes, I can compartmentalize at that time, take away the emotions, and just think of it as a procedure we need to get through under 5 minutes. I don't want my child to see me cry because I think it would distress him further. I want to get it over quickly and love on him. I don't desire this for my child. This is one of the parts of being a heart mom that I dread, but I know we have to go through it to come out on the other side breathing a sigh of relief, like these other families.
Many of my friends know that I am into Christian apologetics - the discipline of becoming knowledgeable of the Christian faith so that we could "...be prepared to give an answer to everyone who asks you to give the reason for the hope that is in you..." (1 Peter 3:15). These situations made me think of my desires - I desire for all children to live life happily and not have to suffer because of their broken bodies. My desire is that no parent should have to see their child go through the pain of all the procedures done just so that their child can live. I desire a world free from pain and sorrow and evil. Many skeptics would look at all the pain and suffering in the world and say that there is something wrong with God; God could not be a good God for creating a world like this. But I see all the heartache and know that it corresponds with what the Bible teaches - we live in a fallen world with corruptible bodies, but this world shall pass and there will be a new heaven and earth where our bodies will not fail us and there will be no night or pain or sorrow. I see this as evidence that there is something that transcends us all, and so I find the argument from desire particularly convincing. C.S. Lewis says it best: “If I find in myself a desire which no experience in this world can
satisfy, the most probable explanation is that I was made for another
world.” I desire that world for me, my family, and for everybody.
People tell me all the time "Stay off the internet, it's only going to scare you." A lot of times they are right. But, many times it's also a great source of information, support, and comfort. Tonight was one of those nights.
Tonight I stumbled across the story of Matt Hammitt, lead singer of the Christian group Sanctus Real. Matt and his wife Sarah gave birth to a baby boy in 2010 with Hypoplastic Left Heart Syndrome - a condition very similar to Brent's. Both Brent and Bowen only have half a heart, but Brent has he left half whereas Bowen has the right half. The open heart surgeries used to treat their conditions are virtually identical. You can read more about The Hammitt family journey at their blog here.
Being the gifted singer that he is, Matt wrote a song dedicated to his son for one of his albums, and I just heard it tonight for the first time. It's perfectly wraps up all of the fear and uncertainty that comes with a serious heart defect and their long-term prognosis being uncertain. But in the song he talks about how he's going to give his son "All of Me", that he's worth all the tears, and worth all the fears. It brought tears to my wife and I. Somebody who was in the exact same position we were not too long ago, captured the emotions so beautifully. I'm so thankful he did. It's how I want to approach this journey with Brent for as long as we're on it - by spending each day giving him all of me.
I tell people all the time that Brent is going to be my "perspective" child. Each of my kids have influenced my life in different ways and taught me different things about myself and the way I view life. I thought I had a balanced perspective on life before, but Brent is already taking it to a whole new level - and that is such a good thing. For sure the weight of his diagnosis and the uncertainty of the future that lies ahead still hits me like a ton of bricks in unsuspecting moments - often at night when my mind has nothing to do but run wild in those moments between wake and asleep. But, as the shock of the initial news has worn off and the clarity of mind and purpose has returned, it has also become easier to recognize the many blessings that we have. Some of the many blessings that I am thankful for include:
Brent. I remember telling some of coworkers shortly after having Bryce that I was thinking about #4 already. It took us a few years and a few conversations about timing, but the truth of the matter is, I always knew I wanted #4. I imagined what he or she would look like, Bryce would be a big brother to them, how they would be the perfect completion to our family. Brent is the fulfillment of that dream, that wish, that longing of the past few years. No matter the road ahead, every day of it with him will be a blessing. I hope he reads this one day and knows and believes that for himself as well.
Quality Healthcare. I have moved around a few times with my job, but long story short, we recently moved to Dallas, TX in 2013. This puts us within 45 minutes from our house of one of the top 20 children's pediatric heart hospitals in the country. In fact, Houston is number 2 in the country, and just a few hours south of us. And another of the top 50 is just about an hour away in Ft. Worth. Bottom line, we have options where we live and if we are ever not comfortable with our care in Dallas, we can take him a few hours south to Houston to the 2nd ranked children's heart hospital in the country. In addition, we will be delivering at St. Paul which has a level 3 NICU which specializes in infants with serious medical problems and is right next to the hospital where Brent will have his surgeries. We are touring both hospitals on July 16th and will make our final decisions around that time, but for now, we feel really good about his treatment options here in Dallas.
Insurance. Although my insurance has high family and annual out of pocket expenses, which I know I will be paying for the foreseeable future, I am still very thankful for it. I can pretty much take Brent wherever I want. It's not an HMO, so I don't have to jump through hoops to get referrals, coordinate care, worry about denials, etc. So far, all I have had to deal with is deductibles and co-pays. But, as long as I can take my son wherever he needs, I'll deal with that.
My Family. My family has been very supportive during this time. My sister took the initiative, without me asking, to set up a gofundme page to help with Brent's medical expenses. You can click on the link and contribute if you like. It's all voluntary and can be completely anonymous.
Support Groups. We have joined a few online support groups for congenital heart defect families. The other day, we were looking into storing Brent's umbilical cord blood and tissue in the hope that stem cell therapy might one day be able to help or cure his defect. The initial cost of this was going to be over $4,000 with annual storage fees of $260. Before signing up, we asked one of our support groups, and they knew about a program for kids with heart defects and other serious conditions where the initial costs are waived and you get the first 5 years of storage for free. We called to see if we qualified, and we did! We get our initial costs waived and free storage for the first 5 years. If we don't use the cord blood and tissue by that time, we can donate or pay the $260 a year to continue storing. But, we would have never known about it without our online support group.
Having Time to Plan. I'm grateful we learned about Brent's diagnosis in advance. Many parents of CHD kids don't. They learn about it after the baby is born, all the while expecting to deliver a completely healthy baby. They have to deal with the shock of very frightening, often life and death news, all while making significant medical decisions all within the same moments, hours, or days. As hard as this time is, at least we have this time to prepare as best we can for Brent's arrival.
Faith & Hope. I don't know if faith has given me hope, or hope has given me faith. Either way, I believe that although we have some very hard days ahead of us, our best days are ahead of us too. I have faith that is true, but I also hope that is true. I have to believe it, and I hold onto that faith and hope. It's what sustains me through the moments of anxiety and fear.
Many more blessings too count. I'll count those another time :)
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