The Time is here

Faith's Journey

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The time has finally come. Faith will be having her ileostomy reversal and pull through surgery at the end of this week.  There is no way to put all of my emotions into words.  I am excited, nervous, terrified, you name it.   This has been a long road to get to this point.  But we are here now.

When Faith was initially diagnosed with Hirschsprung’s Disease and had her ileostomy placed, it was so overwhelming.  There was definitely a learning curve with having a toddler with an ostomy.  But, Anthony and I soon became pros at changing her bag.  And it quickly became no big deal.  It was just a part of our daily routine, and part of her.    

For the most part, since Faith received her diagnosis she has been healthy.  We have only been hospitalized twice in the past two years.  Now, that might seem like a lot if you don’t have a child with a medical condition. But believe me; this is amazing for an HD kid.  I am apart of several Facebook support groups for children with Hirschsprung’s Disease, and many children are hospitalized over and over again.  I spoke to a mother a week ago who’s child has been hospitalized 15 times and is only 5.  So, you can understand that we are extremely grateful.  And this got us wondering, do we really want to go through with this surgery.  Faith is striving and doing so well.  Do we want to have this surgery and potentially open the door for new complications?  

Ultimately, we decided to go through with the surgery.  Faith is strong and resilient.  And although we are perfectly fine with her having an ostomy, we want to give her the chance to live without one.  And we believe that this is the right time to do so.  She will be three in a little less than a month.  The healing process after the surgery can take several months.  Once she is healed, there could be issues with learning to potty train again.  Faith has been trained for urine for quite some time.  But as you can imagine, she will have to learn how to poop.  This will be something new for her.  She has had an ostomy since she was 2 1/2 months old, so pooping will be completely new for her.  Our prayer is that she will have time to heal and re-learn to use the bathroom successfully before she starts school.  So here we are, just a few days away for her surgery.

Anthony and I have been preparing Faith for months for this surgery.  And at her follow-up appointment with her surgeon in January, Faith made it clear that she was ready!  When her surgeon came in the room she told him, “I want you to take Miss Poop (her name for her stoma) and put her back in my belly so that I can poop out my bottom and take a bath and play with my toys whenever I want”!   He could only respond, “So, when do you want to do this, next month?” 

We opted to wait until this summer for two main reasons.  First of all, it would allow my husband to take more time off from his job to be home with her for recovery. And secondly, because Faith has been taking dance classes all year, and her recital was scheduled for May.   We wanted her to be able to participate in the recital.  She worked hard and loved going to dance class.  Her surgeon was in agreement with this, so her surgery was scheduled for June.  

Recital ready!

Last week we had a scare and thought that maybe the surgery would be postponed.  About two weeks ago, while we were at church, Faith threw up twice.  She was lethargic and complained of her tummy hurting.  Faith rarely complains about her tummy hurting.  And when she does, it is usually because she either wants some milk or her ostomy bag has a leak.  But this time, she said it was neither of these things.   When we got home, I checked her bag and noticed very little output.  Because Faith has an ileostomy, she constantly has output coming out.  So the fact that there was very little poop in her bag was scary.  The first thing, I thought about was a possible blockage or obstructions.  

We immediately contacted the on-call surgeon for at our children’s hospital and were advised to bring Faith in to be assessed.  So, two weeks before her surgery, we packed out bags and drove the 3 hours to the hospital in the middle of the night.  Faith was admitted for a couple of days for a small bowel obstruction.  Her doctors explained that there was nothing that we did, or that she ate that caused it.  It just happened.  Fortunately, she was still passing poop which meant that her bowels were not completely obstructed.  And an x-ray revealed it was a small obstruction.  After careful observation, we were released Friday afternoon.  And you k now what?  Faith went to her gymnastics class early Saturday morning.  Sometimes I am amazed at how resilient she is!

Gymnastics anyone?

Faith is resilient, but mommy, not as much. I have been exhausted since this incident and have had little sleep at night thinking about her upcoming surgery.  I know that she is strong and that God has is arms around her and is protecting her.  Still, there is fear in my heart.  There is fear of the actual surgery and fear of what it will be like for Faith afterwards.  She is such a happy, carefree girl.  Will this change her personality?  Will she struggle?  It is hard for any parent to see their child in pain. So I know, every parent can relate to the desire of mine to take this burden from my daughter.  But, I know that can’t happen.  So, as I sit here, about to finishing packing for our hospital stay, I ask that you keep us all in prayer.  

4 thoughts on “The Time is here

  1. Our son was born with HD in June and we are trying to navigate through this season of our lives. I’m so glad that I found your site and will be keeping up. I am praying that your sweet girl is recovering well ❤️

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