Our Surgery Decisions

Given our daughter was in the NICU for 245 days- 8 months exact- we are extremely lucky that our daughter only had to undergo two surgeries, both of which were extremely common and considered low risk.

The first surgery we had to decide on was laser eye surgery for Retinopathy of Prematurity (ROP). This is a disease of the eye where the veins in the eye do not stop growing when they are supposed to and if left untreated can and will cause retinal detachment and blindness. Ophthalmologists in the NICU will frequently check for this disease during your child's stay until it is determined it is no longer a risk or medical interventions have to be taken. In the case of my daughter, we reached the point of medical intervention in the form of laser eye surgery.

Her Ophthalmologist tracked with great care the growth of the veins in her eyes and found that her right eye was officially to the point that if we did not consent to the laser eye surgery she would lose her vision. Our big choice was if we wanted to do the left eye while we were already doing the right eye. So my husband and I had an in-depth conversation, weighed the pros and cons, and decided that it would be best for our daughter if we just did both surgeries at the same time. Our final reasoning was that we would rather risk her peripheral vision, than her entire vision. From our decision to the surgery was 3 days. The surgery took a few hours, and the recovery maybe a week for all the swelling and agitation to go down. Since being home from the NICU we have seen the ophthalmologist, and our daughter does not currently need glasses, in fact, her eyes look near perfect. As time goes on she may need glasses, but for now, all we need to do is follow up with the ophthalmologist in a year.

Her second surgery, a g-tube placement, was not as straightforward of a decision for us to make. During the first 5 months of our daughter's NICU stay, she gained about 1lb a month and was intubated. We still aren't entirely sure why she needed support for such a long time, but eventually, she needed less support and we were able to introduce bottle feeding. We began working with Speech Therapy immediately and our daughter was doing well. We were hopeful that she would take right to it and we would be on our way home soon. However, in that very first week of bottle feeding the concept of a G-tube was brought to us. The Doctors were going off their past experiences and predicted that our little one would take much longer than a week or two to get good at taking a bottle. Both my husband and I bucked at the idea immediately. She just started! Give her a chance!

But being who we were we did begin to research g-tubes. What they were, how they worked, why someone might need one. We called a family meeting with her entire medical team and therapy team and asked our questions. Then we came up with a plan. We would give her a total of 4 weeks to try and get good at taking a bottle. If at the end of the 4 weeks, she was not progressing then we would go ahead with the g-tube placement. So 4 weeks went by and we were pretty much at the same place we were when we made the plan in the first place. So we consented to the surgery on a Sunday, she had the surgery on Tuesday and we were out of the hospital the next Wednesday.

Yes, if we had consented to the surgery 4 weeks earlier, she likely would have been able to come home earlier, but we genuinely wanted to give her a fighting chance before we made the decision. I don't regret waiting at all. Now we are home, she has progressed some with taking a bottle, but honestly not a whole lot, and that is okay. She is however doing a great job with solids, and I have hope that the g-tube will be able to be removed eventually.

My biggest words of reminder for surgeries is: Always do your research. Unless it is a medical emergency, ask for a day to research and think about it. Yes, my daughter's doctors were right that she needed the G-tube, but other surgeries were discussed that my daughter did not end up needing because I decided to have the team wait just a little longer. You are your baby's biggest advocate.

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