Our Day At Children's and St. Paul

Our visit to Children's Medical Center and St. Paul University Hospital on Wednesday was a long, jam packed day.  Grace and I decided to do one blog update about the day, covering it from each perspective.

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!

Dave and Grace

My Desire

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.

Grace

All Of Me

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.

David