What's Next? How much More?

Think of the cuss word that you would yell out if you stubbed your toe in the middle of the night. I wanted to scream my word out all day yesterday.

We found out that both Emma and Abigail have Stage III Retinopathy of Prematurity and were passed a threshold needed for an intervention. We knew that they may have to do laser surgery on their eyes to kill some of the retina tissue so that the rest of the retina would not detach and then they could go blind. With the laser surgery there are some negative side effects such as a decrease in peripheral and night vision. We were praying that this procedure would not have to be done, but alas we found out that their eyes had gotten worse. Abnormal blood vessels are growing in their eyes trying to meet the need for oxygen for them to develop. These abnormal vessels can bleed out and scar and cause the retina to detach.

Luckily, again, we are at a NICU with the finest doctors and surgeons. Our eye doc told us about a new method to stop this abnormal blood vessel growth through a medication called Avastin. Avastin was originally created as a cancer fighting drug. Opthomologists decided to try it in patients that have macular degeneration. It worked wonderfully and now they are trying it on preemies with ROP so that they don't have to destroy parts of the retina with laser surgery. After much research and consternation, Jana and I decided to go ahead with the medication which would be injected into each of their eyes.

I need to describe eye exams to those who have not had that experience in the NICU. Our NICU's policy has changed over the last couple of years to not allow parents in the room while they are giving the eye exam or performing any eye procedure. The reason for this is due to the guttural crying that occurs when the doctors are using retractors to hold the eyes open. As parents you can differentiate crying between a hungry cry, a wet diaper cry, a small cut, etc. This is the cry of a child that is in constant pain. It is so gut wrenching that some nurses in the NICU will not work on the day that eye exams are given. Jana had to wait in the parents room while the procedure was taking place, while I would hold one of the twins that wasn't being examined or operated on. Jana had to turn up the TV in the parents room because she could hear the screaming through the walls.

All of this is needed to try to keep our girls from going blind. They are still suppossed to be in the womb and it is the last 14 weeks or so that their eyes really develop. Our girls have had to do that with everything else going on outside in cribs. The procedure went well and the doctor will check in on them in 10 days and he expects to see a decrease in abnormal blood vessels which we are praying for.

Emma is losing weight. She's lost two ounces in two days. Her blood pH is low and she has entered a metabolic acidosis state. They are going to take her off of feeds and just give her TPN from now until after her surgery on Tuesday to put her back together. They did a baristula which is putting barium into her fistula yesterday and taking x rays to see how the barium traveled down her large intestine and out of her colon. Everything actually looked good with that test.

When is the last straw? Our girls evidently have an entire hay barn full of straw. It's one thing after another and we wait for the next shoe to drop. We might as well be in Imelda Marcos's closet for all the shoes that continue to drop. We are afraid to celebrate anything. We found out that Abigail will have her MRI on Monday which is something they do right before they discharge babies from the NICU. She's also lying on a flat bed now instead of slightly angled. We're afraid to think good thoughts about her going home because we know something else is going to come up. You would think that we would become numb to bad news, but it continues to hit us over the head and punch us in the gut.

We hope for the best and wait for the worst.