Surgery # 3

Surgery number three is on the books for August 19^th. Why so soon? 

Before Ali was born we knew there was a likelihood that this heterotaxy would affect more than just her heart. It had been discussed that we would have issues with her other organs as well, specifically her intestines and spleen.  As a newborn, a G.I. study was done and showed that the spleen was absent, but her intestines seemed normal. We were so relieved that she wouldn’t need additional procedures.

After Ali’s heart surgery we had major issues with reflux (vomit, spew, barf, puke, blaaaaaaaaaghhghghgh).  This called for an upper G.I. study at 5 months of age, which did reveal a slight malrotation of her intestines.  However, the malroation has no correlation with the spew.  Her malrotation is of no trouble to her at all, for now.  There is always the possibility that stuff (stuff=guts) could get fused together or twisted, in which case an emergency surgery would need to be performed.  Fixing her malrotation as a precaution seems more sensible given that we have the good fortune of meeting with the surgeon beforehand. 

Still, why so soon?

Ali has been fed from an NG tube for about 8 months now.  She takes zero nutrition orally.  She is open to bottle feeding but her swallow study reveals that she aspirates if she swallows any liquid that is not the consistency of nectar.  We thicken with rice/oatmeal (the only thing approved for her at this age), but the amount of work that it takes to drink that stuff disinterests her.  People food completely offends her at this point (see below)….

The NG tube has served its purpose for the time being, but its time to switch to a G-tube. The G-tube will be surgically inserted into her abdomen and will be a better solution for long term help with nutrition.  Since we are ready to make this transition in Alessandra’s journey it only made sense to have her Ladd’s procedure (to fix the malrotation) done at the same time…..and while they’re at it, throw in an appendectomy as well.

Why so soon?

If we have to do this, I want it done before fall, a.k.a: germ season.  We are expected to stay 3 days in the ICU for recovery, given her need for cardiac assessment after the procedure.  The operation itself should only be about 2 hours.  The risks are relatively minor.  Of course there is a risk for infection, and that risk is increased since she is lacking a spleen, but is no different from the risks we faced with any of her other procedures.  We will have to get used to her new “button” for feeding.  The benefits are that we won’t have to worry about future emergencies and she will have a feeding “button” that will be concealed to all but those with x-ray vision.  This means she can go out in public without stares, points and whispers. 

I have to say… Ali has taught me so much.  I used to think that having a child that people stare at would be the worst thing in the world. It’s really not. Most people are amazing! Some look, some smile, some comment indirectly hoping not to offend but are still curious, some will have experience with similar equipment and will blatantly ask “what’s up with her?” some will have no experience but will still ask “what’s up with her?”  Truth is, I don’t mind any of it.  It has never been difficult for me to talk about it.  I have no issues explaining what the NG is for or what the 02 was for.   Still, for the sake of mobility and comfort it will be much better for Ali to have the G-tube.  This way her chubby little cheeks can be free of tape and she can blend in with the masses ;)

I know this surgery will be standard and successful.  She will be fine.  Still, I’m a mommy and this is my baby going in for an operation and I’m scared.  Our family would greatly appreciate any prayers on 8/19 that no complications arise and that she will recover strongly.  She just started crawling and I want her back on her hands and knees as quickly as possible!!

<3

~Melissa