I have been sharing on this blog for about 9 months. The scope and purpose of my blog has evolved and changed over time.
At first this blog served as a way to update everyone about Daniel. Some of our family and friends are on Facebook, but many are not. I thought this would be a good way to keep everyone in the loop.
Then it became a sort of therapeutic journal for me. For the first 52 days of Daniel’s life, we were inpatient at Children’s Memorial Hermann. It was just me sitting vigil in Daniel’s hospital room, alone for the most part– Brian was working, my mom and dad were home taking care of David and Hannah. Words just started to pour out of me. I felt driven and compelled to share.
When Daniel returned to the hospital for his second open heart surgery, this blog became something else. I began to feel that it was important to give voice to our struggle for others. There is something hugely validating about reading words that convey exactly how you feel. When people read my blog, I want to give them that experience. When I share about the inspiring heart warriors I have met along the way, I want their parents and the whole world to know that they matter.
Brian and I saw the movie A Star is Born while Daniel was getting his Glenn. I figured it would be a good idea to get out of the hospital for the 5+ hours of surgery, and a movie seemed like a good option. In reality, I couldn’t enjoy it. I kept feeling panic– what if he coded on the operating table? What if he dies and I’m not there to hold him? I was itching to get out of the theatre the whole time.
One quote stuck out to me while watching, though. Jackson Maine, the main character, says to Ally, “‘Look, talent comes everywhere, but having something to say and a way to say it so that people listen to it, that’s a whole other bag. And unless you get out and you try to do it, you’ll never know.'”
Whether it is to give hope to struggling heart moms, to raise awareness for babies born with congenital heart defects, or to share my faith, I have something to say now, and I can say it in a way that makes a difference. That’s why I am writing this blog.
The title of my blog is “Our HLHS Journey: Becoming a CHD Warrior Family.” Daniel’s struggle with HLHS isn’t just his struggle; it is ours. This is not to minimize the physical and emotional burden Daniel alone has to bear, but rather to broaden the scope of my focus in further posts. I will no longer be doing “Daniel Updates.” Instead I will share how we as a whole family are doing.
The major lesson I have had to learn this month is that nothing about Daniel is typical. Just when I think Daniel is becoming a “typical” baby, something happens that reminds me he isn’t. I am not sure why this realization is so frustrating each time I learn it. I have spent a considerable amount of time this month railing (in my head) at doctors, pharmacists, and speech therapists. I just wish there were ANSWERS, but there isn’t another baby like Daniel, and there aren’t very many single ventricle babies in our area. The bottom line is there is no protocol when dealing with Daniel’s unique set of issues, and it leaves me feeling very annoyed (at best) and terrified (at worst) most of the time.
Daniel turned 7 months old on Valentine’s Day. For the last 3 weeks, Daniel has been receiving occupational therapy with Early Child Intervention. His ECI therapist comes to our house once a week and works with him. When she first came to evaluate Daniel, he couldn’t even lift his head off the blanket during tummy time. Now, Daniel is rolling over both ways, grabbing toys, turning his head a full 90 degrees, and putting weight on his feet.
We are now working on building his abdominal muscles and his arm muscles. Daniel isn’t able to push up on his arms while on his tummy. Having three open-chest surgeries before 4 months of age really messed up his development. For weeks, he was too sore to pick up under his arms, and he missed tummy time for most of his first 5 months of life. His legs are much stronger than his arms, but he is making improvements day by day. To build his arm muscles, he lays on his back and reaches up to grab toys, like in the picture below. This seems like a really normal baby thing, but for Daniel reaching up builds muscle as he struggles against gravity.
The reason Daniel is on the pillow below above is because he has to be elevated while getting fed through his g-tube, otherwise he will puke. When he isn’t receiving feeds, Daniel is flat on his back.
This month I had the major dilemma about whether I should allow Daniel to get his Synagis shot again. The Synagis shot is not a vaccine, but it is supposed to prevent RSV. Daniel is supposed to get it every 28 days. It would be devastating for Daniel to get RSV since he is a single ventricle baby. However, Daniel gets violently sick and vomits for 5-6 days each time after receiving the Synagis shot. When he vomits, he gags and retches and turns blue. It is HORRIBLE. Not to mention I am extremely worried about him aspirating his vomit because of his paralyzed vocal cord and developing pneumonia.
I consulted many different doctors in my decision-making process. I asked Daniel’s primary care doctor, his cardiologist, a pediatric emergency room doctor, Daniel’s surgeon, and one of the PICU cardiologists. I even asked two different pharmacists. Everyone had a different opinion.
It was so frustrating that there wasn’t a clear-cut answer. It was yet another reminder that Daniel is a special baby, and I am the only one on his care team that knows the whole story. Because David and Hannah are not in daycare and because we don’t leave the house, I decided against the Synagis this time. My main priority is keeping Daniel OUT OF THE HOSPITAL. I ended up making the decision to discontinue Synagis because, as multiple doctors told me, the risk of aspiration pneumonia from the Synagis-related vomiting is greater than the risk he will get RSV. I pray I made the right decision.
An ever-present reminder that Daniel is not a “normal” baby is his g-tube. I absolutely can’t stand the g-tube. He has this IV pole that holds the bag and the pump. It follows us everywhere we go. If I am in the TV room and need to go to the kitchen, I have to stand up with Daniel and drag the pole, making sure it doesn’t catch on anything along the way. I live in dread that one of us will rip out the g-tube again, which is SUPER gross, painful for Daniel, and annoying. When a baby drinks a bottle by mouth, he can drink 4-5 ounces in a matter of minutes. However, when you pump the milk in the baby’s stomach by force, you can’t pump it that quickly. Because Daniel is getting fed via g-tube, he is very sensitive to how much milk he can receive over the course of an hour. Basically, Daniel only has about 5 hours in a 24 hour period when he is not hooked up to the g-tube.
Daniel has only rarely eaten by mouth his whole life. He was born premature and had his first open chest surgery at 6 days old. Then he had the Norwood, during which he received a paralyzed vocal cord. He has consistently failed his swallow studies because of his vocal cord. The goal has always been to pass the swallow study and begin eating by mouth as soon as possible. The occupational therapist at Memorial Hermann told me to practice feeding Daniel 5 ml by mouth twice a day to help him work on his feeding skills. It is important, she told me, that Daniel associate feeding with his mouth. Then when we got home, his primary care doctor told me to absolutely never feed Daniel by mouth if he is aspirating. So I haven’t tried to feed by mouth, and now I am afraid that was a huge mistake. All of this is, once again, another reminder that there is no set answer when it comes to Daniel.
In January, Daniel almost passed his swallow study. In the swallow study, the speech therapist puts barium in the bottle so that she can see exactly where the milk goes when Daniel swallows it. Daniel sits in front of this machine and drinks his bottle, and the speech therapist can see on the screen his mouth, his esophagus and wind pipe. In January, Daniel took his bottle, and he only aspirated at the end of the bottle when he got tired.
We tried again a month later in February (last week). Daniel epically failed. He acted terrified of the bottle. At the time, I thought it was because he was overly tired and hungry, but now I’m not so sure. Every time since then when I have tried to feed him by mouth, he throws a fit. He cries and acts like he hates it. The speech therapist told me to try feeding a tiny amount of breastmilk by bottle or baby food by spoon. Daniel HATES the bottle, and he BARELY tolerates the spoon.
I am feeling so defeated. Some time between January and February, Daniel developed a major oral aversion. In fact, Daniel LOVES his feeding pump and pole. When he is hungry, he smacks his head and looks at the POLE, which kills me. I keep reminding myself of the positives: 1) At least he still loves his pacifier, 2) at least he associates feeling full with pleasure, and 3)at least he is gaining weight and able to eat at all. Daniel’s ECI therapist gave us some grape-flavored gloves, and I have been rubbing his gums with those in hopes that he will learn about taste and be less afraid of food in his mouth. I am also dipping his pacifier in bananas, and I am spoon-feeding him tiny tastes of bananas. It doesn’t look like the g-tube will be gone any time soon.
I have also been battling the pharmacies and Humana. Daniel is on many different meds, some of which need to be compounded on site. There are only 2 pharmacies that can compound medications in the Temple/Belton area– the CDM pharmacy and the McLane’s Children’s Pharmacy. The CDM pharmacy is open till midnight, so we were going there. To make a long story short, we are no longer getting his meds refilled there. Making sure Daniel’s medicines are covered by the insurance and filled is a never-ending battle.
Daniel got his six month shots and his flu shot last week. He had a horrible reaction to the flu shot. He was sick all weekend, once again vomiting. It turns out the flu shot and the Synagis shot are the same kind of shot, both immunoglobulins. I wonder if Daniel is allergic to something in these shots. I don’t know. It was a MISERABLE few days. Here is Daniel feeling sorry for himself on Saturday.
Most of the day, I am with Daniel. He is a very needy baby. He is doing this coughing thing when he cries, which sometimes causes him to throw up. As I have stated above, I am super paranoid about throwing up, so I try to keep him happy at all costs. I adore Daniel, and I love every minute that I can hold him and snuggle him because I remember a few weeks ago when I couldn’t.
Thank God for my dad. He watches David and Hannah much of the day while I am with Daniel. It is very difficult being alone with David and Hannah and Daniel, primarily because of the feeding pole. If I am holding Daniel in the TV room, I can’t go to the kitchen and get David some apple juice very easily because I have to drag the feeding pole with me. I could put Daniel down, but sometimes that is not feasible, especially when Daniel is fussy, which is quite often. Thankfully my dad is here to help. I don’t know what I would do without him. The kids are always running around the “compound,” jumping on the trampoline and playing outside with “Big Daddy” when they aren’t with me.
We have signed David up for T-ball this year! He will technically be in “pre-T” because he is only 4. I am so excited to see David start playing sports. He is very competitive and athletic. I am also very competitive, and I am really trying to voice (against my nature), “The main point is that you do your best!” instead of “WIN, David, WIN!” But, honestly, it’s hard. Winning is so much FUN!
David will start pre-K in the fall at Providence Preparatory School. He will attend school two days per week (Tuesdays and Thursdays) and do “home work” assigned by the teacher at home on Mondays, Wednesdays, and Fridays. I know David will love school. It is surreal to me that I have a kid who is almost school-age. Where is the time going???
Hannah is a full-blown girly girl. She loves playing dress up, and she is very theatrical and dramatic. Her favorite thing to do is play in her bedroom in front of her mirror, where she make faces at herself, talks to herself, and dances. She also likes to sit with me while I put on my makeup (once in a blue moon) and do my hair in the bathroom. A couple of weeks ago, I caught Hannah in the bathroom like this (below). She said to me, “I do my makeup like you, mommy!” Hannah really hates being laughed at, unless she is being silly and wants you to laugh at her. Apparently makeup is nothing silly to Hannah, and she got really mad at me when I laughed at her.
Hannah started pre-ballet classes at Lisa’s Dance Connection in Temple last week. She thinks she is a princess when she wears her ballet leotard. It was a huge battle to actually get her to take it off last week. I am having a hard time relating to Hannah with this. I was always more sports-minded. I was never in to clothes like this, and I certainly was not a dance girl. I absolutely adore my girly-girl, though, and I want to support her and her interests wholeheartedly.
I am feeling really tired all the time. I am really struggling with my weight at the moment, and I’m having trouble getting back into a workout groove. I am really addicted to coffee like it is life support, and I am craving sugary foods, in part I think to bolster my energy levels to get me through the day. I am reading books like How Not to Die by Michael Greger and Finding Ultra by Rich Roll, and I desperately want to lose weight and be healthy. I want to be a good steward of my four-chambered heart, but I am really struggling right now.
Ironically, the more things I have going on–the busier I am outside the home–the more productive I am inside the home. When I am at home managing Daniel’s feeds and meds and making sure the kids don’t kill each other, I am surviving. When I am traveling, writing, planning, creating, thinking, speaking, moving–I am thriving. I guess that is why I am always seeking new opportunities.
Thank you to everyone who continues to follow my blog. I have had some exciting new things happening because people are reading it. I can’t wait to share more with you as the opportunities unfold.
I realized on the way home from the pharmacy today that I haven’t prayed about any of this. I need to bring all of these heavy things weighing on my heart to God. I need the Holy Spirit to realign my heart and mind to God’s so that His will becomes mine.
Father, forgive me for not coming to You. Thank you for your gift of the Holy Spirit, who “intercedes for us through wordless groans” and “intercedes… in accordance with the will of God” (Rom. 8:26-27) when I feel too heavy to pray. Give me strength. Help me see what is important. Guide me; help me see the right path to take. Help me glorify You in all that I do. In Jesus’ name, Amen.