Today was a very tough day. Our little boy had to go under the knife and we didn't know what the outcome would be. Unfortunately, it was neither as simple nor as positive as we'd hoped.
It turns out that Isaak was indeed suffering from NEC. It had the courtesy to wall itself off from the rest of his body such that no air leaks had ever occurred to tip them off on the x-ray. When the surgeons opened him him up, they saw white intestines - a sure sign that the tissue was dead.
In the end, they removed over 50% of his intestinal track above his colon.
The good news (!?!) is that his colon was not affected and neither were his uppermost small intestines. They also had to perform an ostomy to allow his bowel the time and environment to heal. In 7-10 days, if he's doing well, he will begin receiving small amounts of food and they will monitor how it looks when it passes out of the ostomy. In a few weeks, they will reconnect his upper and lower intestines and hope that all goes well. Before all of that, the first order of business will be keeping him comfortable and infection free over the next few days. Bowel surgery is always risky and even more so when you are talking about a micro-preemie.
Isaak is currently heavily sedated (and will be for several days) but was alert enough to open up an eye and look at his mommy while she was holding his hand. He is still on a ventilator, but they are looking at lowering his setting as his lungs are no longer being compressed by his guts. I have to say that he certainly looks a lot more comfortable than he did the last few days before the procedure. These are small things, but they are the things at which we grasp.
The surgeons are confident they removed all of the necrotized tissue. The scary thing is there is no guarantee that it won't come back. The chances aren't really high, but NEC is very poorly understood. Apparently, in terms of the likelihood of a recurrence, it is better that they operate after the necrosis has essentially stabilized than to do it too early.
The long term prognosis really is a mystery. In some ways it was good that this happened at such an early gestational age as the body has amazing ways of adapting and repairing itself. It's unknown if he will be able to absorb enough nutrition from strictly oral intake in the relatively near term. There is a chance he could leave the hospital in a few weeks only receiving oral food, there is chance he might need oral AND IV nutrition (likely I think) and there is chance that he will be strictly IV. The hope is that things improve gradually and consistently. During normal gestation, much of the growth in the bowels occurs in the last trimester. Hopefully he gets an extra shot of growth with what he has left.
I will not lie, this has been extraordinarily difficult for Bekka and myself. We have been through so many things in the last two years with Oliver and now these little guys. This ranks up there as one of the toughest days we've ever had. To be this powerless as a parent and to see such a tiny little baby in so much distress is inconceivably heart-wrenching. No one ever said that being a parent would be easy, but I'll be damned if we expected it to be this hard.
We love you Isaak.
Friday, May 21, 2010
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Jesus Neil, I don't know what to say man. This is heart wrenching for those of us watching from afar, I can't even begin to imagine your pain and angst. Thanks for having the courage, time and patience to keep us all informed. We love you guys.
ReplyDeleteI can't even imagine the trials you have faced today, and the feelings that accompany facing all that lies ahead. I do know that with each new challenge, you find yourselves pushed further and further, and you show to all those who love you just how deep and resilient are your strength, faith and love. Please know how very loved and supported, and so wholly respected and admired, you are in turn. We send all four of you our hopes and prayers and love and hugs.
ReplyDeleteHang in there Neil and Bekka. I hope things turn better for Isaak really soon. Lots of love to you both.
ReplyDelete~Laurie
Little Isaak is a champ - he has had so many obstacles to overcome - continue being strong for him and we are continuing praying for your strength. Neil your faith will sustain you because you serve a powerful God. We love you all.
ReplyDeleteIndeed, who would imagine it would be so hard. You are amazing people. If it helps, you have people you don't know thinking about you and your kids and hoping that things improve, fast.
ReplyDelete