(Both Quin and I happened to be typing a post at the same time this afternoon. When we realized it, we went ahead and just posted them both. Thus, there’s some repetitiveness in the postings, but hey…it will be the, “he said, she said” versions of our current day).
I wish I could tell you all that, “no news is good news” or that my posting title wasn’t a bad pun. We’ve been out of emotional energy to write much over the last week (reserves are low these days so when the energy is gone, it’s gone….and we try not to feel guilty). Although our little rock star continues to amaze us in so many ways and is expressing so many adorable mannerisms as she learns to eat and continues to grow (5 lbs today!), we have been holding our breath again since Tuesday based on the results of her weekly eye exam. We had been told for about a week in passing from the nurses that her anticipated ventricular shunt surgery was “tentatively” scheduled for next Friday, yet no one had actually talked to us about it despite our asking. We were told that the neurosurgeon, “would be in contact with us.” Although we are eager for the shunt surgery to be over since it’s one of the two major things she has to do to be able to do come home (the other is learn to eat more volume through a bottle), as the reality of it nears we have been scared.
Already on edge and feeling the weight of the thousands of hours of anxiety and inability to fully breathe, we were checking ourselves and hoping that we were just overly sensitive with our fears and the eye doctor’s request to have her looked at by another Opthamologist early this week. The second doctor’s exam resulted in him wanting us to have her transferred to Georgetown University Hospital for the foremost expert in Washington DC’s opinion about the condition of her eyes. After many discussions about the necessity of the transfer and the likelihood of her coming back to Fairfax, we made the decision to have her transferred.
So, our little hero Avery was transferred to Georgetown Hospital’s NICU yesterday morning to have this “third opinion.” She made the transport safely and her wonderful transfer team (special thanks to Anne and Danny!) indicated that her monitors, “never made a single beep” during the drive from Fairfax to Georgetown. Yep… Rock Star!
We arrived shortly after they settled her into her spot in the back corner near a sunny window and were introduced to her nurse Laura, and the team of some of the medical specialists who would be caring for her during her stay.
It was found that her retina is “pulling” due to scar tissue build up, which is causing the retina to detach. This is a rare, and obviously challenging condition where the doctors are quick to reveal that there is simply not enough medical research or knowledge, and therefore, not enough success. This issue occurs in a very small percentage of preemies and because of its low success rate, there are very few doctors who are even willing to perform the surgery. Most now only do the laser surgeries. We are grateful again that we live in an area of the world where the surgery is even an option, and there is one doctor who is able to perform it.
Despite the odds, they believe it’s essential that Avery undergo surgery quickly to give her a chance of ever having vision in her left eye. The surgery only has a 50% success rate, but 50% is better than 0%, which is an almost certain outcome if nothing was done at all.
We are thanking God that as of this moment her right eye is not experiencing the detachment, but they are watching it closely, as it’s still at significant risk. Apparently, there appears to be an internal clock with infants and if detachment is going to occur, it typically happens within a few weeks before or after the due date. Avery is 39 weeks gestational age on Monday (full term – 40 weeks – would be 11/22) . The doctor explained that if, God forbid, she does lose vision in the left eye, that children who have eyesight in only one eye from birth are able to compensate using only one eye much better than if eyesight was lost in one eye at a later age. After hearing all of the information and discussing the options, we consented for Avery to have eye surgery on Monday morning. It’s currently scheduled for approximately 9-11am. They will be monitoring her for a few days for the obvious post-surgical concerns, but we will not know if the procedure was a success for at least 4-6 months.
So far, although it would be a stretch to say we are “enjoying our stay” at Georgetown, we are pleased with their interest in our parental involvement, the fact that she got to feel sunshine on her face for the first time because of her window, and the fact that the care givers there seem to be very friendly, knowledgeable, and attentive to her. It’s a VERY different NICU environment than at Fairfax and because they only have about one-fourth of the number of babies at Georgetown, the noise level and general chaos is not even in the same ballpark. She’s received great care at Fairfax and we value the medical team that know her the best. There are trade-offs in both hospitals, so we will evaluate our experience over the next few days and then make a determination of whether we’ll have her go back to Fairfax or stay at Georgetown for the rest of her ‘long journey home.’
Please say some extra special prayers for our baby girl’s eyes as she goes into surgery tomorrow morning on her left eye. And, as the next three weeks pass that her right eye stays healthy and does not develop this same condition. She is a precious miracle and we want her to be able to see the beauty of the world she is fighting so hard to be a part of.