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Q&A
I thought it might be a good idea to answer the most frequent questions people ask me about Daniel’s journey with HLHS. As you read, if you have a question, please comment, and I will add my answer to this post.
When did you find out about Daniel’s diagnosis?
My husband and I found out at our 20-week ultrasound at Scott & White hospital. It honestly never occurred to us that the 20-week ultrasound was something more than the gender reveal. Now I realize it is a diagnostic tool. You can read all about the nightmare of our initial diagnosis in this post: D-Day
How did you decide on Memorial Hermann?
The first thing I did after our 20-week ultrasound was call my sister-in-law, Christi. She and my brother are surgeons at Memorial Hermann. I was too overwhelmed and heartbroken to deal with anything, so I asked her to look into what our next step should be. She was able to get us in with The Fetal Center four days after Daniel’s 20-week ultrasound.
I was extremely impressed with The Fetal Center. All of our appointments were coordinated. Their organization and professionalism made a difficult situation much easier. You can read all about our first visit here: “Keep you eyes on where you want to go. Don’t look at the trees!”
We met Dr. Salazar at our very first visit to The Fetal Center. I already knew about his credentials from my own research and from the endorsement of my brother and sister-in-law. The very first thing he said to us when we met him was, “I have 7 children, so I know what it means to love and cherish your child. Know that I treat every single baby I operate on like my own, and I will do everything in my power to give Daniel the best results possible.” From that moment, I knew without a doubt that Dr. Salazar was the man for the job. I’ve never second guessed my decision or had any doubts since that moment.
After all we have been through the last six months, I now realize it is important to consider the whole team, not just the surgeon, when deciding to have your baby with CHD at a hospital. I can honestly say that the nurses, cardiologists, and doctors at Children’s Memorial Hermann are awesome. We received top notch care. I got to know all of them very well over the course of 110 days inpatient. I was always included, and I felt like an integral part of the team. Everyone took the time to answer all my questions. Most importantly, they took great care of Daniel!
Did you ever consider not having Daniel since he was diagnosed while you were still pregnant?
One of the first things I was asked after Daniel’s confirmation echo was, “Is termination an option for you?” They were not encouraging me to get an abortion, but they were letting me know that it was an option. I immediately said, “no.”
Daniel is an incredible fighter. He was born 6 weeks early with half a heart, and he has kicked CHD’s butt every step of the way. Now after 5 surgeries, he is happy and healthy. He loves his mama and his siblings (and his daddy when mama is busy). He had his first appointment with the Early Childhood Intervention team last week, and they said that, developmentally, he was “only” at 5 months old. Theoretically that means he is a month behind since he is 6 months old. Remember, though, Daniel was a preemie! He was born 6 weeks early. After spending a month of his life intubated, after 5 surgeries, after 110 days inpatient, Daniel is actually ahead of where he needs to be. He is thriving.
I spoke with Dr. Salazar recently. I had asked him the following questions, “What factors do you consider, as a surgeon, when you agree to operate on a baby with a heart defect? When does quality of life factor in? Technically you could operate on any baby, regardless of the severity of the case, but it isn’t always good to do so, right? You are able to keep a baby alive for a long time, but at what point does that become harmful?” Just FYI– For an extremely busy heart surgeon, Dr. Salazar is incredibly accessible. One of the most profound things he said in our conversation was, “The things we are doing today were unheard of five, ten, fifteen years ago. We don’t want to allow the preconceived ideas of the past to get in the way of a child’s future. Just because you’ve been told there is no hope doesn’t mean there is none.” I would encourage anyone who has been given a scary diagnosis for her unborn baby to keep in mind that modern medicine in incredible. Consult an expert before you make a decision about your baby’s future.
I do not want to minimize how incredibly difficult this journey has been. Being away from my family, watching Daniel struggle, seeing him in pain, being utterly helpless to do anything to help him–it has all been the stuff of nightmares. I have serious PTSD from it. My biggest fear is having Daniel die in the hospital after being hooked up for weeks and weeks. I would much rather some massive crisis happen suddenly at home than have him fight and die while inpatient. If you have never had to grapple with stuff like this, if you have never had to contemplate life and death decisions for your baby, then please do not try to counsel a pregnant woman who has just received a devastating diagnosis for her baby. If you know someone like this, the best thing you could do is give her a hug, and listen to her without preaching at her about how “worth it” it will be. That sounds incredibly callous coming from someone who will not have to walk in her shoes and see her baby suffer. Although I never considered it, I can certainly see how a woman in my position could have been tempted to choose abortion for her baby, especially if she had been given the skewed information I had at first. The best thing you can do is ask how you can help her, how you can serve her in her journey. Let me just say this– I am so thankful I chose life for Daniel. He is my pride and joy. He has a wonderful life. This journey has never been easy, but it has been SO worth it. Read more here:
How long was Daniel in the hospital?
Daniel was born on July 14, 2018. He was inpatient 52 days from birth to discharge home. During that time, he had the pulmonary banding surgery, the Norwood, and his g-tube placement.
Daniel was re-admitted on October 25, 2018, after a routine cardiology appointment. At his echo, Dr. V saw a concerning narrowing of his aorta. Because of this narrowing, he was in heart failure. Daniel had a heart cath procedure October 26 to balloon his aorta, an effort that initially looked promising but ultimately failed. He then had to have his Glenn surgery early, just before he turned 4 months old on November 6.
We were discharged home on December 22nd. All told, we were 58 days inpatient the second time.
What surgeries and procedures has Daniel had? Daniel has had–
Pulmonary artery banding first when he was 6 days old on July 20, 2018. Roller Coaster
Norwood on August 10, 2018.Explaining the Norwood ; Post-Norwood Updates
G-tube placed at the end of August. He had to get a g-tube because he got a paralyzed vocal cord during the Norwood, and he was aspirating when trying to drink from a bottle.
Heart cath & ballooning of his aorta on October 26th
Glenn on November 6th
Diaphragm plication on December 4th. He had the left side of his diaphragm paralyzed during the Glenn. Survival Mode
How did you manage all that time 3 hours away from your other two children?
I have an amazing support system. Brian and I live right between my mom and dad and my aunt and uncle. The whole “compound” took care of David and Hannah while Brian and I were in Houston. Brian’s mom came down for 2 weeks after Daniel was born. When I was pregnant and for the 52 days Daniel was inpatient after birth, I stayed in an RV three minutes from the hospital. My mom would come down with the kids on Thursday through Sunday each week to the RV so I could spend time with them. When Daniel was inpatient for his Glenn, I would go home on the weekends while Brian stayed at the hospital with Daniel. Being separated as a family was one of the hardest parts of this journey, but it has made us all grow together and become closer, and it all seems like a distant bad memory now.
What did you do to prepare David and Hannah for all that they would go through as siblings?
There is no way to prepare.
The most important thing in all of this has been reinforcing our children’s faith in God by reading bible stories together and through prayer. We really focused on stories like Joseph, Moses, David and Goliath, Daniel and the Lion’s Den, and obviously Jesus’ crucifixion and resurrection. Through it all, I would repeat, “Sometimes things seem bad to us, but we know God has a plan for good, no matter what. When Joseph was sold into slavery/Moses was put in the basket/David confronted Goliath/Daniel put in the lion’s den/Jesus died, it seemed really scary. But God is always good. Because of the scary times, Joseph ended up saving his brothers/Moses ended up leading his people to the promised land/David eventually became king/God closed the lions’ mouths and allowed everyone to see the truth of God’s power/Jesus saved us from our sins.”
It is also important to model faith for them. I wanted David and Hannah to see Brian and I pray together and worship together as a family through difficult times.
How have David and Hannah handled all of this?
They have had to grow so much. They have gone through so much more than I have, and at a much younger age. David has asked me questions like, “Mommy, if hospitals are good, why do people go there and die sometimes?” and “Mommy, if God is so powerful and good, why does he allow people to die?”
David is much more connected with me. He takes his responsibility as oldest child very seriously, and I think he felt like he had to be strong for Hannah or something. He still likes to sleep with me in my bed at night, even though Hannah mostly sleeps in their room. He is always asking if we are going to have to go back to the hospital. He has shouldered a lot more of the burden.
Hannah seems blissfully unaware, like she has already forgotten everything. She loves her baby brother. She plays doctor with him, frequently listening to his heart with her play stethoscope. She sits with him and tells him how much she loves him and gives him his pacifier. She also gets mad at him and yells, “PUT DAN-ELL DOWN” when she wants attention. David would never do this. David knows about Daniel’s heart and still views him as if he is fragile; Hannah just sees him as her precious, somewhat annoying and inconvenient baby brother.
What advice would you give another heart mom?
I will probably write a book on this topic. Here are a few things–
Assemble a team you trust. I knew ahead of time that Texas Children’s Hospital and Dell Children’s in Dallas are very highly rated hospitals. But I did my research, and I completely trusted Daniel’s team at Memorial Hermann. This confidence is priceless, and I would encourage all parents to make personal connections with doctors and surgeons, rather than rely solely on statistics. Advice for Advocates
Understand that each heart warrior’s journey is different. I was relieved after Daniel’s initial echo because it showed he didn’t have any other complicating factors. It seemed like Daniel had a straightforward case of HLHS. Now I realize that anything can happen once the baby is born. Daniel has had a few complications–prematurity, paralyzed vocal cord (twice), paralyzed left diaphragm, three different infections. All of it has meant Daniel’s journey is unique.
Allow people to help you and care about you. Accepting Help
How did you cope and stay strong?
I prayed and read my Chronological Life Application Study Bible daily.
Many days I just focused on the basics– eat, sleep, drink, breathe.
I just functioned one minute at a time.
I learned to ask the doctors questions like, “On a scale of 1 to 10, how big of a deal is this?”
I attended rounds each day. When Daniel was intubated and I couldn’t hold him, I found out I felt most connected with him when I was involved in his care.
How can people help you?
While inpatient, the most helpful thing was money for parking. Parking is $12 per day, and that is only if you don’t leave the garage. Gift cards are extremely helpful since you have to eat out all the time. There are many apps that allow you to send money without fees– Venmo & PayPal, to name a couple.
Many days I was just alone sitting in Daniel’s room, watching him as he lay there intubated, so it was wonderful having visitors, especially since we were three hours away from home.
Once we got home (both times), bringing food was extremely helpful. It is really hard managing 17 meds, feeds through the g-tube, a 2-year old and 4-year old, clean house, and cook.
Now that we are home, we would love to have adult visitors. We still can’t have school-age kids because kids are germ-carriers, and our number 1 priority is keeping Daniel healthy during RSV and flu season. But we would love to have adult friends who are healthy and haven’t been exposed to any illnesses. Please be sure you are not coughing or sneezing, and be sure you use hand sanitizer upon entering the house.
Why are you blogging?
Writing for me has proven cathartic. It is the way I process my feelings.
I hope that I am giving voice to others who are going through something similar. Sometimes reading about others and realizing you are not alone is validating and comforting.
When we found out about Daniel’s diagnosis, it was amazing how other heart moms who I had never met were so willing to share their stories with me. I now have an incredible support system of moms of children with CHD. I want to be someone who gives back to others. This is the way I do that.