6.12.2015

A Necessary Evil: Going Back to the NICU




So I'm just going to get straight to it.

We're heading back to the NICU late next week. Sadie Ann is going to have laser eye surgery. 


Sadie Ann saw her retina eye specialist yesterday for her weekly eye exam yesterday. The previous week her doctor mentioned that surgery could be a possibility; this week the possibility turned into a certainty.

Her eyes are continuing to do well following the Avastin injections she received back in February. There hasn't been any signs of the ROP returning - which is great! However, the concern is that the injections cause the vessels to grow significantly slower than what they should (which is expected) and at her particular gestational age (which is late 40's) those vessels should have grown into stage three of the eyes and hers are still in stage two.

The injections are a fairly new intervention, but what the retina specialists who give the injections across the south-east have seen is that those babies who are around 50-weeks gestation and whose blood vessels are still in stage two of the eye later redevelop the ROP when they get to 60, 70, or 80 weeks gestation. At that time, the ROP moves quickly. There's a risk of significant vision loss if not immediately identified and treated. And typically around that time babies are too big to perform surgery in the NICU and too small to be in an actual OR, so they have to go to a different facility in a different city. Doing the procedure now is more-so preventative - and permanent. It eleminates the fear of ROP coming back.

Following surgery, there will no longer be a need for weekly retina exams - which, honestly, will be a relief. Each week that passes gets harder and harder for her eye exams. She screams louder. She fights stronger. And this mama is in the corner of the tiny room trying to block out those harsh screams for help. It's tough. I don't like it. It will be worth it to not have to hear her scream in pain and fear on a weekly basis.

Laser eye surgery isn't typically a big deal for adults, but it is for babies. She'll be completely sedated for the procedure as well as intubated and back on the ventilator. Which breaks my heart to even say. Occasionally I look back at some of Sadie Ann's first videos. In the background is the haunting sounds of beeps and dings that elicit this indescribable, gut-wrenching feeling I hoped to never feel again. While this particular situation is quite different, any trip to the NICU that involves your baby on a breathing machine is frightening.

As with any surgery, there are benefits and risks. In this particular situation, the benefits out weigh the risks. We are praying for a successful surgery without any complications. We are also praying that she recovers quickly, comes off the ventilator quickly, and we are back home in just a few days. The doctor says we could be in the hospital anywhere from two to seven days - depending on how the procedure goes, if we run into any complications, and her recovery.

The thought of stepping foot in the NICU other than to just visit some of our favorite people makes my heart sink to depths I try to forget about. But this has to be done. Time to put on my strong mama hat again, take a deep breath, and start preparing myself to walk back into NICU.

3 comments:

Carrie said...

Gosh I can't even imagine what you are going through as a mom. Reading your post gives me goosebumps. Sending positive thoughts and strength to you and Sadie Ann and I hope the surgery goes well <3

Nancy Bethala said...

Linley, my heart goes out to you. You are very strong. ...the moment you become a mother you become strong! Blessings for Sadie Ann. All will be well !!

Nancy Bethala said...
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