Cataracts, Now What?

So, we just found out that our daughter needs to put on weight, and fast. We also just found out that she has Bilateral Congenital Cataracts (BCC)… What would you do? We both went home in shock and we cried. Then we called our moms and cried to them. We asked our mother’s what we should do? We weren’t equipped to deal with this, we were still kids! Now we were responsible for a tiny human, and we have had ZERO experience before this. How is it that this decision was up to us? If someone else could just make the decision, then whatever the outcome… it wasn’t on us. But wait, we were the adults now! This responsibility was ours.

This little tiny baby (who has only gotten smaller since birth) is counting on us to do what’s right.

Our moms cried with us, they were speechless. No one on either side of our families had ever heard of children born with cataracts. Our mom’s only had “healthy” children, so they couldn’t even relate to what we were feeling, not really. Yes, they were devastated. Their babies were hurting and there was nothing they could do for us. Then, there were the emotions of knowing that their first grand kid had a medical issue and was going to need help. We were given a list of questions to ask the doctor next time we saw him. Should our families donate blood just in case? Will getting better medical insurance mean getting a better surgery? Would it be better to have surgery on both eyes at the same time? The list went on and on, and it was overwhelming.

Meanwhile, life went on. I had to fatten my child up. I was doing everything that I was told to do to try and breastfeed. I was pumping, going to a lactation specialist, using shields, lactation cookies, etc.

Not one professional EVER told me that sometimes this just happens.

Sometimes milk doesn’t come in, and that’s okay. I was always told to just keep doing what I was doing. Try breastfeeding first, then make a bottle of formula for her. Don’t give up, you don’t want her to just have formula. Formula is essentially bad for babies: they will over eat. That’s what makes kids overweight as they get older. Breast milk is natural, it helps protect them, keeps them healthy… Everything was being shoved down my throat, and everything that I was doing was wrong. What was wrong with me? What was wrong with my body? Why way I failing her in such a way, already? — To this day, I still have a negative reaction when people mention that they got too much milk in, and have a surplus of milk for their babies. I despise when people get holier than thou about how much better it is to breastfeed a baby. Formula is just fine! I had to formula feed both of my girls. (I never got milk in when I had Heidi either). Reagan is now nine years old and she is anything but overweight. I can’t look at any child, at any age, and tell you if they were breastfed or formula fed. Do what’s right for you. And guess what??? Sometimes mom’s don’t get a milk supply.

Your kid will still survive! As long as you are feeding them, you’re doing it right!

I think it was about a week later that we got a call from the scheduling nurse. It was time to face the music. Reagan needed surgery and it was happening now! We scheduled two eye surgeries. The first one was on February 15, 2011. The second one would be on February 24, 2011. What do most newlywed couples do on Valentine’s Day? (We were still newlyweds.. We hadn’t even been married a year yet) Most couples would go out, or if you have a newborn, stay in and cook a nice dinner at home, right? Not us. Our first Valentine’s Day as a married couple was spent making checklists and packing for the hospital. We were due to check in at the Children’s Hospital at a ridiculously early hour. We spent the evening making sure Reagan had a bath, and even more snuggles than normal. We were packing an overnight bag for all three of us, making sure we had everything that we could possibly need for a day and a night at the hospital. Reagan couldn’t eat after midnight, so we made sure to set an alarm just in case we fell asleep.

I wanted to make sure that she could have her last bottle, because there is no way to explain to a newborn that their food supply is done for a while.

The next morning, before the sun was even thinking about starting to come up, we left for San Diego. Reagan was having her very first eye surgery at only 3.5 weeks old. I was a complete mess about it. Look back at how tiny your baby was at 3.5 weeks, would you have let your child out of your sight? No, probably not. Oh yeah, if my child was only 3.5 weeks, that means that I was only 3.5 weeks post-partum! I was still bleeding, my emotions and hormones were still all over the place, and now I was supposed to trust that all these medical strangers had my daughters best interest at heart? There wasn’t enough time for me to do more research. And, I will be honest, at that point I didn’t want to do research on anything. I wanted to stick my head in the sand. I wanted to curl into the fetal position, pull the covers over my head and have someone wake me when this nightmare was over.

One nice thing about being at a Children’s Hospital is that they have their sh*t together! They know that they are dealing with children, and then having to deal with the parents of those children. There was very little sit and wait time. You get there and check in. You are given a little buzzer like when you go out to eat. Then you are taken into the back for pre op prep. Reagan was weighed, measured, given a hospital gown, and a nurse gave us all the instructions for the day.

Since Reagan wasn’t quite a month old yet, and this was her first time going under anesthesia, we would be staying the night.

The doctor came by to check on us, put a mark over her eye indicating which one he would be cutting into, and to let us know about how long the procedure would take. Once he was done, we would be “buzzed” and brought into another room where he would go over how the surgery went. The younger you are, the earlier your surgery… That meant it was just about time to say goodbye to my little baby. The operating nurse came in to take her back. We were only able to go so far. Once they crossed over the operating room area, we were led back out to the hospital waiting room. 

According to her doctor, Reagan’s surgery went great! No issues at all. We had to stay the night at the hospital, and then check into his office with him in the morning for a follow up before we would be able to leave and go home. It was a long night in the hospital. Reagan, who was usually a great sleeper, even being so young was struggling. How could she not?

She had IV’s attached, a huge patch and shield over her eye, and was in a strange place.

Fortunately, we had a room all to ourselves for the night. The nurses really wanted Reagan to sleep in the crib, because it made it easier to check her vitals and such when they came in all. night. long… But Reagan wouldn’t hear of it, and honestly neither would I. I needed my baby close, and the only way that she would really fall asleep was if she was laying in my arms. After the day we had, I felt like we both needed that. So that’s what we did. I slept on the couch with her in my arms… it wasn’t great sleep, but we were connected all night long.

The next morning, we were released. We walked across the hospital parking lot and into the doctor’s office for our appointment. After he checked her out, took off the huge patch and gave us instructions for caring for her for the week, we were able to go home. We needed to keep a shield taped over her eye for the next week to let it heal without her getting at her eye. After the week of healing, we would be starting her on eye drops.

Eight days later, we would be back at the hospital to do this all over again for her other eye.

Her second eye surgery was scheduled for February 24. Her one month “birthday”. I should have been taking a cute little one month picture of her, but instead we were preparing for surgery number two. TWO surgeries in the first month of her life. Welcome to life, kid… and welcome to motherhood, mom!