Our daughter Hannah was born 11/22/17. She's our fifth baby and a welcome surprise caboose for our family. At 6 days old she was diagnosed with a rare condition called cricopharyngeal achalasia, also known as cricopharyngeal hypertrophy, bar, or narrowing. It is a congenital defect involving the upper esophageal sphincter muscle that is too large and impairs the swallowing process, kind of like a pinch in a hose.

At 8 days old Hannah underwent a procedure to dilate her esophagus and reduce the muscle with Botox injections, but unfortunately, the procedure was unsuccessful. On March 16 she had a myotomy of the muscle, and she is now able to swallow. After 4 months on a feeding tube, she is finally able to eat by mouth.

This is her story that is still being written.

Friday, March 2, 2018

Family Fast

Hannah's prayer hands.
We invite our friends and family to join us in a special fast for Hannah this coming Sunday, March 4.  Hannah's surgery date is still undetermined, and we are asking for prayers on behalf of her doctors and surgeons to choose the best course of action for her optimal health and recovery.

Prayers for Hannah's body to be strong and resilient to ward off infections or surgical complications, and to be responsive to medications and treatments.

We are asking for prayers for our family. We've had the sickest winter we've ever experienced, and it's especially scary with a vulnerable baby in the house. Two kids have had croup, we've had coughs and fevers and throwing up. Kids have missed school, I've had to cancel appointments, and Chris has had to use sick leave to stay home when I wasn't able to.

11 lb 1 oz today!
Prayers for mom and dad. This has been an incredibly stressful time for us. So far we have managed to keep ourselves healthy, but it is exhausting to run a household of seven under normal circumstances, and we are often overwhelmed and discouraged. Whether we have stayed sane is yet to be seen.

Prayers for momma.  I'm really hoping for good news on Monday of a surgery date soon (maybe in the next couple weeks?), but I should be praying and hoping for the best possible outcome for Hannah even if it takes longer than that. Perhaps what I need is greater faith in the Lord's timeline.  And if the doctor's plan and the Lord's plan don't match my plan, I need some serious courage and strength to accept it.

We feel very blessed by all the medical interventions that have been available to sustain Hannah and that she has been able to stay healthy over the past few months.  She has not taken food by mouth since she was 6 days old, and she is now over 3 months old, and is finally over eleven pounds. What a miracle!  And somehow this sweet little girl manages to be happy and smiley despite all her challenges and always having a tube through her nose and into her stomach.

Sweet big sister
The first Sunday of each month in the Church of Jesus Christ of Latter-Day Saints (Mormon church) is called Fast Sunday.  Church members refrain from food and drink for 2 consecutive meals and donate what would have been spent on food to the poor and needy. The purpose of fasting is to show humility to the Lord, to pray and meditate and repent, to seek spiritual guidance, and ask for needed blessings. The pangs of physical hunger remind us of our continual need for spiritual nourishment.

I'm not actually physically able to fast right now since I'm nursing (or rather, pumping), but I am planning to dedicate my day to scripture study, prayer and meditation, and I'm going to refrain from my favorite guilty pleasures of Mtn dew and sweets and idle time-wasting on my phone.  It's not quite the same as a physical fast, but it will be a sacrifice for me in a way that I'm able to make.

We are using this Sunday to direct our prayers towards Hannah's recovery and all who are involved in her care, and we invite you to join us in any way you are comfortable, whether it be prayer, fasting, cosmic thoughts and good vibes, or anything else you can think of. Since I wrote my post a couple days ago feeling discouraged about the surgery being a moving target, I've been gaining confidence that I might actually be able to present my reasoning to the doctor without bawling my eyes out, and that it might actually work, and that if he doesn't agree to do the surgery sooner rather than later, I'm going to find a surgeon who will.  This is me advocating for my child.

1 comment:

  1. We will be fasting for her and for the whole family. We are convinced of the efficacy of fasting and prayer, and know that God wants us to pray for our concerns, not because He doesn't know what they are (He's omniscient after all), but because He wants us to show faith in Him. We are keeping your family's names continuously on the Chicago Temple prayer roll.
    Love, Dad

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