Lily Jane

I know I haven't blogged about Lilys birth yet. I will soon. I promise. Right now there's more than that on my mind. Monday of this week, I took Lily in for her two week check up. She weighed in at 8lbs 9oz which is almost a whole pound since birth. She measured in at 21inches. I don't think she was stretched very well when she was born because otherwise, she's grown two inches in two weeks! She's right in the middle of the road for her height and weight. So the MD comes in and does her assessment; listens to her heart, lungs and tummy. Checks all the other physical features they do at check ups. She gets out her light kit and starts with Lily's eyes. I was standing right next to her since I was keeping my hands on Lily as she was laying on the exam table. It only took me a second to notice that she was lingering on one of Lilys eyes when checking it. I immediately asked her what was wrong. She said well it could be nothing and that it was just too bright in the room to get a good view. So she turned out one of the lights, checks her left eye and then comes back again and again to her right eye. I ask again, what's wrong. Well it could be nothing. I looked right at her and said "Dr. Handyman, this is my child. It's not nothing with our medical history." she tells me she's not seeing any red reflexes in Lilys right eye and her pupil is cloudy which could mean a cataract. I've never in my life heard of an infant having a cataract. She finishes her check up and tells me she's going to get us a referral to an eye institute up at OHSU. She walks out and takes our chart to our nurse. The nurse comes back in as I'm nursing Lily and in tears. Terri tells me her heart sank when the doctor gave her our chart for the referral. She told Dr. Handyman that poor mom doesn't need any more issues. Boy was she right.
Our insurance doesn't require a referral to specialists so Terri gave me the number to call up there to see if I could expedite things faster that way. The gravity of it all hadn't set in but I called as soon as I got into the car. They sent me to patient registration for all the fun stuff then back to the eye clinic. She asks me if I know why we are coming so I told her. She put me on hold and then comes back to ask if I could come up first thing Tuesday morning. Pauses and reconsiders and said can you come up now? It's 2:25 Monday. I called jay since he was at home with the other two and told him I was just going to go by myself. It'd take too long to try and find daycare for the other two and go all the way out to the farm to get him. I knew when they asked me to come up same day, it was scary important.
We get up there and the specialist comes right out to get us. She's amazingly sweet and very personable. She asked me how I was doing and I told her I was just trying to process everything that was happening etc. She looks in Lilys eyes and says yes she can see something but wants to dilate her eyes for a really good look. So we wait for the meds to kick in and she can see a centrally located cataract in her right eye. It's the size of her pupil undilated. She couldn't even see her retina and optic nerve around the cataract because of the size. I cry silently trying to hold it all together and let the gravity of what's about to happen sink in. We did an ultrasound on Lilys eye to check the retina and optic nerve. Thankfully they look great and her left eye looks great as well.
They were going to try to schedule her surgery out closer to furor weeks of age but there were schedule conflicts because of her size and age. Because of the holiday week, Wednesday wasn't completely booked up but it would require us to come in on thanksgiving to have her dressing removed. We scheduled for Wednesday. I left and called Jay on my way home trying to explain the insane amount of information that was just thrown at me. He listened but didn't really get it either. I spent most of Tuesday at our Peds clinic and Salem hospital getting labs done for Lily and getting stuff ready for the big kids to be home with a sitter all day.
Wednesday we checked in at 6:15 and the eye institute. Poor Lily was hungry since I hadn't fed her since 3:30. Back in pre op, they take care of all the necessities. The specialist comes in to explain the procedure to us. Jay starts asking questions regarding long term care etc and as the specialist is explaining this to him, I see tears falling. He's getting soft in his old age ;-). She leaves and I walked over to him. I asked him if the gravity of it all was setting in and he could only nod. I felt so bad for him. I was maintaining composure for the most part until they came in to take Lily and anesthesia told me they wouldn't let me in while they gassed Lily out. They let me walk her to the OR doors and that's when I lost it. I just stood there holding her and crying, not wanting to give her to them. I finally did and walked away crying with Jay. The nursing staff was awesome. They went back there to check on her for me and to give me a report. Then we had to wait in the lobby for what seemed like an eternity. Surgery was supposed to last two hours. I laid down to sleep on jays lap and woke to the specialist saying we are done. It only took an hour. The cataract was bigger than the original assessment but everything was out, Lily did great and they were just letting her wake up. We waited again for about 45 minutes until the post op nursing staff said we could see her. I cried when we went back. She was laying on the bed, wrapped up and hooked up to everything. She had oxygen blowing on her to keep her breathing. They said the hardest part about a baby so young is that they've only learned how to breathe and eat 17 days ago in Lilys case. With being out under, they "forget" so we were monitored for a long time afterward.
Now that the shock was over, the long term care kicked in. Lily will get a contact placed in her eye next week. When they took the cataract, they took her lens in her eye and didn't replace it since she's still growing. The contact will be her temporary lens. We will have to start patching her good eye arund 4-6 months to force her weaker eye to work. We've got two sets of eye drops for the next month to put in. She's got a little hard shield that covers her eye so she doesn't scratch it since she has stitches in her eye. We will have eye therapy. We will be best friends with I-5 and our specialist. She will get glasses around a year of age to compensate for her up close vision. She will have to have a second surgery to put in the permanent lens eventually.
I've been trying to hold on to the fact that we are so lucky our pediatrician caught this so eary or Lily would be blind in that eye. We are very blessed to be only an hour from the only place in the NW that could have done that surgery on Lily. We are lucky we got in to a specialist on the very same day it was found and surgery was so quick. I thank Heavenly Father for all of that. However, it doesn't mean I'm not upset. It doesn't mean that I'm not scared. It doesn't mean that I'm not freaking out about it all because I am. I cried yesterday for awhile. Jay asked me if my post partum was kicking in. Not sure yet but I'd be surprised if I didn't get some again!! It doesn't mean I haven't asked why. Because I have. More than once. It's sad all of our medical issues are making me lean towards we are done having kids. Lilys ordeal makes Liam's look like a cake walk.
We will get thru this. We will make this our new normal just like we did with all the food problems. Until then and I'm sure thru it all, it's going to be hard. We are holding on to Heavenly Fathers amazing grace and the blessings that we live in a country where our medical care is so good.