August 25th. This was the date set for Ellis’ Fontan surgery. This would be the third part of the three staged surgery that a majority of the kids with HLHS (Hypoplastic Left Heart Syndrome) undergo, before or around their 5th birthday. A major goal was to get her to 30 pounds and to keep her healthy and thriving.
From birth, weight gain has been a constant source of concern. As a newborn, she received all her nutrition from a feeding tube for 1 1/2 years. Transitioning to full oral feeding took months. She experienced oral aversion and didn’t want to eat; when food entered her mouth, its taste and texture made her gag, throw up, or just spit it out. This was the first time I learned that a person had to learn how to eat. I assumed it was a natural skill a person was born with. It was an eye opening experience and realization that nothing should be taken for granted.
Through occupational therapy, medication, overnight feeding, extra calorie formula, and full access to pantry and desserts any time of day, she finally achieved her weight goal TODAY of 30 pounds! Getting here involved a lot of tearful moments for me. Sometimes I’d cry stirring in calorie boosting powder into her soup and then accidentally giving that calorie laden soup to Elliot and the regular soup to Ellis. Other times, I’d break out into cold sweat when she threw up all the food she consumed right after a meal.
That was a long summary of how we got to this stage of even being considered for the Fontan surgery.
Here’s our current update:
Ellis developed cold symptoms in the past few days: a cough, runny nose, raspy voice, and an awful mood to go with the physical symptoms. I called the pediatrician’s office one minute after they opened and went in for an appointment soon after. A check-up and an x-ray of her sinus showed that she has a minor cold with a bacterial infection. 10 days of antibiotics will take care of it. Nothing major.
But this means that her Fontan surgery is postponed for another 6 weeks. Ellis needs to be sick free for 4-6 weeks before the surgery; if she has recently been sick, it would negatively affect post surgery recovery.
We are now waiting to be scheduled for a September surgery date from the hospital. If we miss that date, it may be postponed till the following spring or summer. The hospital avoids these kinds of surgeries during the flu season when germs are more rampant and kids are at higher risk for catching something.
A lesson I’m reluctantly learning is to let go of what I cannot control and to appreciate the present time. I’m all bent out of shape, but really, what’s another 6 weeks in the grand scheme of things? So often I take it for granted that every day is precious. I have to fight the urge to throw up my hands in despair.
Raising Ellis reminds me that each day is indeed a gift. Rather than sitting here frustrated and overwhelmed, I need to find contentment even when I don’t want to: enjoy the mundane, go with the flow, celebrate small successes, and be happy where I am. For now I need to focus on what I can do, which is to savor her sweet little face, her squeaky voice and hilarious laughs, and her random declarations of love for mommy.
I’m reserving today for funk mode and trying to be mature in learning how to accept the unexpected. Here we go again into bubble living mode for the next 6 weeks.
I’ll start the appreciation thing first thing tomorrow morning…after I’ve guzzled my second, or maybe the third cup of coffee.
Some verses to help me have peace in my heart:
- “Commit everything you do to the Lord. Trust him, and he will help you.” Psalm 37:5
- “The Lord directs our steps, so why try to understand everything along the way?” Proverbs 20:24
- “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus” Philippians 4:6-7
- “Just as you cannot understand the path of the wind or the mystery of a tiny baby growing in its mother’s womb, so you cannot understand the activity of God, who does all things.” Ecclesiastes 11:1
- “Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.” Psalm 27:14