Pierce had another eye exam today and they found that he has now progressed to stage 3 in the right eye and stage 2 in the left eye. While this is not much of a change, the eye dr noticed that he is developing plus disease (a condition in which the blood vessels in the eye begin to twist and pull at the retina). This is very serious and not something that can go untreated. She immediately called in her colleague for a second opinion and after an hour of poking and prodding our little man with things that look like something used during a CIA torture session, they both decided surgery needed to be done soon. In fact, they were so concerned that they tried booking the OR today, but quickly realized that P had just eaten (he has to have an empty stomach for surgery to avoid aspirating). We knew that if his ROP had progressed, surgery would move quickly, but you can never prepare yourself for the emotions that flood over you when things like this happen.
In order to prevent the retina from detaching, the surgery needs to take place within the next 72 hours. So tonight, here's what we're up against: At noon tomorrow, Pierce will have his feeds stopped and an IV will be placed. They will come to get him around 330pm to take him to the OR. He will be placed under anesthesia and go back on the ventilator. The surgery will begin around 430 and will take between 4-6 hours. Fortunately, the surgery is minimally invasive as it is done by laser. Perhaps the scariest thing is that Pierce will go back on the vent. There's really no way to know how long it will take him to come off the vent once he wakes up- some babies take a few hours, others take days. He will go back to the NICU while he's recovering, which could be 1-4+ days.
In addition to this unexpected surgery, we met with P's neurosurgeon today. Unfortunately, we didn't get many answers, but we were able to draw a few conclusions (at least for now) about a VP shunt. We were told that Pierce is reabsorbing/draining 99% of the fluid in his ventricles, which is very good! Most babies with a grade 3/4 require a shunt almost immediately and for a long period of time, but Dr. Heaffner thinks that if Pierce requires one, it will likely not be for an extended period of time. The remaining 1% that is not reabsorbing is what is causing the slight swelling. There is still a chance, though small, that Pierce could "outgrow" his need for a shunt if we chose to wait and just monitor his ventricle size. Depending on the ultrasound results on Monday, Dr.Heaffner may be comfortable sending P home without a shunt and following him outpatient for awhile. However the neurosurgeon would like to go ahead and place a shunt as soon as possible. We think this is probably because he feels he will need it down the road. Even though he feels this way, he assured of us of 2 things: 1. he's not completely sure Pierce definitely needs a shunt (in other words, he thinks Pierce will most likely need one, but there is still a chance this could resolve on its own) and 2. waiting for a few repeat ultrasounds will not hurt Pierce in any way. Of course, Pierce has not followed the "norm" on this matter as he has been known to do in the past. It's unusual that a child would be able to go so long without having his VAD tapped (P went almost a month) and then develop swelling in the ventricles later on. But for now, Nik and I felt it was best to wait until we know that a permanent shunt is needed.
As a side note, Pierce is doing really well tonight. He has come down on his o2- staying about 27-28% and is having little to no spells. I think the caffeine, or lack of, was the problem and for now we seem to have that under control. Bottle feeding is going well. He took all 4 of his bottles yesterday. For this, we are so thankful because it means we are one more step closer to going home.
I know this goes without saying, but please pray for us tonight. It seems so surreal that our baby will have to undergo yet another surgery tomorrow. Our hearts are totally broken for him. Pray that his body heals quickly and that he will be free from pain. Pray also that this surgery will be successful and that Pierce's vision will be completely restored as a result. And lastly, pray that his ventricles will reduce in size and that next Monday's ultrasound will show that they are stable in size.
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Christ is All,