Preparing

Geeze. We have so much to think about these days. First of all, Surgery #2 is tomorrow. Although I dread it greatly, I feel a little at ease because I know what to expect. We did just go through this last week! One thing is for sure, I'm ready to trade in this shield for glasses! It is no fun removing that tape four times a day for drops!

The optical lady has a pair of sample glasses that we might be able to borrow starting Thursday if his prescription is still +20! I'm hoping that's the case. We have to wait 2 WEEKS for his glasses to come in. These have already been the longest 2 weeks of our lives. I cannot imagine having to wait 2 more weeks for glasses knowing that's the only thing preventing him to see at that point.

Because of his prescription being so strong there are only TWO frames in all the store for us to choose from that will hold the lenses. There really needs to be a greater market for this. We have to eventually order 3 pairs of glasses. You have to have two pair so you always have a back up, and the sunglasses you have already seen will have prescription lenses in them. (Think about how sensitive your eyes are to light, and most of our eyes haven't been cut on!)

The very first day our doctor told us three ways to treat this after the removal of the lenses:

1. glasses

2. contacts

3. lens implants

Pretty much right now, #1 and 2 are our choices. We will have to wait until he is about school age for the implant surgery (because his eyes will grow so rapidly until then). At first, the idea of contacts totally creeped me out. After talking with a few people who have gone through this, the contacts have really worked well for them. Some doctors don't even give the option of glasses! He would be able to wear them for about 2 weeks straight. Once I learned this, I really liked the idea because then I knew he would be able to see for 2 weeks straight any time he opened his eyes. (I worry about him waking up in the morning, and me having to run to him to give him his glasses in order for him to be able to see at all.) And then I watched this...

I really like the idea behind the contacts, but it might be quite some time before I'm ready for the reality. I almost passed out when I saw this! I know it will all be live and learn situations. And we will probably learn that Wayne might be the one who needs to do that if we decide that's what's best for Grant. As of right now, I'm hoping he does well with the glasses! Ultimately, no one should have to chose between contacts or glasses for their 2 month old, but this is the card we've been dealt. We've just all got to learn to live with it.

As of right now, we just have to get past the surgery tomorrow, and HOPEFULLY we will be able to put glasses on this little fella Thursday! One thing's for sure. I will be looking my absolute BEST just in case. It will be, after all, the first time he ever sees me!

Surgery #1

Tuesday night we got NO sleep. I literally had less than two hours of sleep! I have never in my life been so anxious about anything. All I could think about was what was going to happen the following morning. I knew it was necessary, but that still didn't ease the anxiety of it all. Poor little guy couldn't have a bottle after midnight so I stayed up to make sure he got as much in as he could until then. We all then took a nap. Wayne and I were up and going a little after 3. He was allowed to have clear pedialyte then, and I was determined to get everything in him I could. I was so afraid of him getting hungry.

We all (my family was in town) got ready really fast, loaded up and headed to the hospital. We filled out tons of paper work, had to take him to get his blood drawn, prayed over him, and before we knew it we were heading back to the surgery area. Wayne and I were the only ones allowed back. Our families waited anxiously.

As we got back, they brought in a gown that was entirely too big. I put it on with tears in my eyes. All I could think as I watched Wayne hold him was that no baby this small should ever have to be cut on. It just wasn't fair.

The anesthesiologist came back and reassured us that Grant was in more danger in the car on the way to the hospital than he was actually back in surgery. This slightly eased my nerves.

Before we knew it, Dr. Metz was back seeing us one last time before scrubbing up, and then the nurse came back to get our baby. We were able to walk him to the door. Wayne and I had a quick debate on who would carry him. I let him win, but I got lots of sugar before we handed him over. ;) Watching the nurse carry him down the hallway was the hardest thing I have ever done. His head was facing us over her shoulder, and I watched until I couldn't see his sweet face anymore. The floodgates opened.

Wayne and I went back to our room and waited ... in silence. There was really nothing to say, and we both had extremely heavy hearts. My Dad called after a few short minutes and told us he was going to go and get us some breakfast. Luckily, it helped the time pass. After our little man was gone for about 30 minutes, the anesthesiologist came back to tell us that Grant was "under" and he was doing great. They were about to begin surgery. Shew, I knew it would be about an hour before they brought our sweet baby back.

About this time, Br. Kevin showed up. I tell you, it was the perfect timing. We had lots of good conversation, and it helped the time pass as quickly as possible. For that I will be forever grateful. A little bit later, my dad pulled the "preacher card" and came back for a quick visit. I was looking at my watch constantly. We had FINALLY made it to 45 minutes when the phone rang. My heart sank. No one ever mentioned the phone ringing. We didn't even know until this point that there was a phone in the room. I could tell from the way Wayne was talking that he wasn't too happy, and I was anxious to hear what was going on. When he hung up, he informed us that they were JUST THEN beginning surgery. A microscope wasn't working properly so they had to fix it before they began. Talk about frustration. My little man had been out for an hour so far, and they hadn't done anything. The anesthesiologist was wonderful. He had a crew in there so he was able to come out and keep us informed throughout the entire time. He assured us again that as long as the lens came out easily, the surgery should only last about an hour.

He was correct. About an hour later, I saw Dr. Metz coming down the hall. He quickly came in and told us our little guy was doing just fine! He was in recovery, and in about 30 minutes he would hopefully be awake enough to come and see us!

Wayne and I were practically standing in the hallway from this point on. Then we saw the most precious sight we have ever seen. A nurse was coming down the hall holding our precious little boy! I quickly sat in the rocking chair (there was noway anyone was holding this baby before me!!!) and rejoiced at the feeling of him in my arms again!

After a few minutes, I gave daddy a turn. You can tell in this picture just how exhausted we were. Stress tends to do that to you.

Even though we saw some pitiful little children at Children's Hospital (and my prayers go out to their parents), nothing has ever looked as pitiful to me as this.

We had to give him some more pedialyte, and once they saw him taking it well, we were able to dress him and head home. We did have a fairly long evening and morning this morning. It's hard to tell what from. His ears, colic or his eye??? They told us his eye shouldn't really hurt, but it was hard for us to grasp that.

Today we had to run back to the doctor to get the patch removed. As we were waiting, a little guy walked out into the waiting room with his mama, and she proudly proclaimed that "everything looked just fine!" Wayne leaned over and said, "Why couldn't we have heard that last week?"

I was so nervous about this. I was honestly afraid that I might would pass out. I was expecting his eye to be really bloody. Funny thing was it looked almost completely normal. If you didn't know he had surgery, you wouldn't know he had surgery. His doctor was really pleased with everything and even measured his eye prescription. This will make more sense to those who wear glasses, but his prescription so far in the right eye is +20!!! (Remember he has no lens.) As long as it's the same next week, we will order his glasses. We went in and picked them out today. It was hard seeing him in the sample pair that his prescription will most likely be, but I'm sure we will be use to it quickly. The importantly thing is he will be able to see!

We went ahead and bought his sunglasses frames (his prescription lenses are not in yet). Dr. Metz said we could use them as a patch, and we also thought it might help him get use to them. Wayne talked me into the yellow ones, and to be honest, I think they are adorable!!!

(I'm sorry the pictures are all poor quality, but this wasn't exactly something I was excited about. I just didn't even want to take my camera.)

Thanks again for all the prayers. This little guy is living proof that prayers are answered! We are so thankful for his safe surgery, and praying for the same next week!

Now, we better continue with the NINE drops that have to go into his eye every day!

Grief

One week. It's already been a week since we found out Grant couldn't see. It has been the LONGEST week of my life. I think about his baby blues constantly, and I hold him constantly. I told Wayne last Tuesday that I felt like I went through the five stages of grief in less than twenty four hours. The thing that stinks is I go through them every day. I was reading Jack's mom's blog and she talks about how she went through the exact same thing, and we felt many of the same emotions.

Denial. I feel like I start every single day like this. Thinking, "It must be a bad dream." I keep hoping the doctor will call and tell me it's a miracle, and Grant's eyes have healed themselves. It's just hard knowing that only 1 in every 10, 000 children are born with cataracts, and ours just happens to be one of them. We are the only patient of our pediatrician's going through this. He only has one other patient with a vision disorder. His nurse, who has been a pediatric nurse for 30 years, didn't know infants could get cataracts. Our pharmacist knew it was possible, but had never seen a baby with cataracts. I KNOW God could miraculously heal Grant's eyes if He so desired, but I feel through lots of prayers Him preparing us for this journey.

Anger. At some point every single day I have to fight back anger. Anger at myself. It's so hard for me to convince myself that it's not my fault. Anger at others. It frustrates me when people with perfectly healthy babies tell me NOT to worry. Really? I know they mean well, but you can't tell a mama not to worry about her baby that can't see!!

Bargaining. If I have said it once I have said it a million times. "I would give Grant my eyes in a heartbeat if I could. I wouldn't think twice. I WISH I could go through this for him."

Depression. This has hit me like a ton of bricks. I cry daily. Sometimes hourly. I hold this sweet baby 24/7. Literally. The ONLY time he isn't in my arms is when I go to the bathroom, fix his bottles, or if someone else is loving on him. I even sleep in the recliner every single night with him. The only thing that can bring him comfort at times is touch, and I just want him to KNOW that I'm there all the time.

Acceptance. I know Grant needs this surgery. I know he needs the glasses. Bless him. His frustration with not being able to see has grown over the last week. He has cried a lot. Sometimes the only thing that makes it better is light, being that is the only thing he can see. I sit in a well lit house with blinds open all day.

Like I've said, I so wish I could take this away, but I can't. Since I can't, I just want the next few weeks of surgery and getting use to the glasses and drops to pass quickly. We started one of the drops yesterday, and he HATES it. I'm hoping he gets use to it soon because it's going to be a while before we don't have to put several drops in his eyes.

Jacob is at my parents house for two nights. I wanted to be able to sit and hold Grant guilt free for the two days before his surgery. And Jacob really needed some special attention. I know I say this with every post, but I really, really mean it. Thank you all for all the prayers. They are definitely felt. Keep them coming through his first surgery Wednesday morning,

One More Favor

Yet again, I am coming to you guys for prayer. Grant is going to his pediatrician at noon tomorrow for a possible ear infection. I have talked to his Opthamologist, and it shouldn't cause complications with his surgery unless his congestion moves to his chest. We're just having faith that won't happen. I'm ready for this little guy to catch a break!

UPDATE: Little man does have fluid behind both ears. He now has drops for his bottle (colic), drops for his eyes, and drops for his ears. Lord, please help me put the right drops in the right places! As of right now, surgery on his right eye will still be on Wednesday morning.

Praising God!

As you can imagine, we were very anxious with the ultra sound today. I had to lay Grant with his back on my chest and hold him still. Poor baby cried and cried. The ultra sound didn't hurt, he just didn't like it one bit. It seemed to take forever for the doctor to tell us anything. He kept printing and printing. We were waiting and waiting. I just kept thinking, "Great. Not only does my baby have cataracts, but the doctor obviously sees something else." I'm a glass half empty kind of person, can you tell? Well, he finally sat us up and told us there was nothing besides the cataracts for us to be concerned about. We were overwhelmed with RELIEF and PRAISE! I think he saw how happy we were with this news, and he reminded us that we had a long road ahead. He talked about the drops that we will be putting in his eyes for the next several months every two hours, and how much work this was going to be on us. I couldn't help but think, "Come on now. He's got to be kidding. There is nothing that I wouldn't GLADLY do to help my baby see!!!!!!!!!!" It irritated me that he was talking about the work we would have to do. All I can think about is my baby and what he is going through.

We then talked to our doctor's office, and his first surgery on his right eye will be next Wednesday morning. We have to be there at 5:45 AM. Hopefully our doctor can get the OR the following Wednesday for his left eye. (I don't know if I mentioned this before, but they won't do both eyes the same day for fear if something were to happen they wouldn't want him to lose the ability to see in both eyes. But don't worry. We must have complete faith that nothing will happen!) A week after that his eyes will be examined for glasses (when I learn how they figure out a prescription for a newborn, I will let you know), and a week after that he will see through his glasses for the first time. We are looking so forward to that day! What a glorious day it will be! In the Bible, Jesus healed the blind man with mud. In the coming weeks (and years) JESUS will heal our son through a physician and glasses!

More Prayer Please

Sweet prayer warriors, please send a few more up today. At 1:30 Grant will have an ultra sound done on his eyes to make sure there are no complications other than the cataracts. We are all trying to get an idea of what they are going to get into before they do the surgery. Plus, his doctor needs to know if there will be a need for a retina specialists for the surgery. Pray, pray, pray. Thank you.

I will update later today as we know something.

A Little More Info

First of all...WOW! We have been so overwhelmed with the amount of love and prayers that have been poured out on behalf of our family, and most importantly for our sweet baby boy! We could never, ever thank you all enough for caring. I wish to goodness that I could take the time to respond to every facebook comment, message, email, voice mail, etc, but please know it is so appreciated. It has helped us cope over the last couple of days in ways we might not would be able to explain. To be honest, writing can be therapy for me, so you will probably see several posts about this over the next coming weeks. Plus, I can keep all family and friends updated without having to repeat everything 100 times. Honestly, our parents have been the only ones we have called too much. This just seems to be easier now.

The last 48 hours have been tough. And let's be honest. Anytime someone faces something medical, what's the first thing you do when you get home? Google. :) We were in such shock at the doctor's office that I feel like we left with a million questions. I found this one website that has answered a lot: Little Four Eyes. To be honest, at first I couldn't even look at it. I hated the name. I understood that it was a place for parents who have infants and toddlers with vision disorders, but the name made me sick. After a few hours passed, I braved the site. I am so glad I did. It answered lots of questions. If you have any, you could probably find answers there too. I've had a lot of people comment with "if" Grant has to wear glasses. There is no "if" involved. It will happen immediately after his second surgery in two weeks. And these aren't your typical glasses. They are extremely thick because they are replacing the eyes lenses that are being removed from surgery. I know I'm babbling a lot, but honestly we didn't know babies could be born with cataracts nor did we know babies wore glasses like these until yesterday (much less did we ever imagine our son would be facing this). Here is a blog I found through the above sight. It has helped me so much. They are just a few months ahead of us, and it will explain the road we will be going down. And believe me we have felt all the emotions they have over the last 2 days. The hardest part for me is hearing the words "disability" and "handicap". In the words of our pediatrician, Grant will have a learning ABILITY. He will just have to learn a few things differently. As far as we know, his mind is sharp! He just can't see. Please continue to pray for our precious son.

I'm going to leave you today with a video of Jack from the above blog. He is such a cutie, and it can show you a quick overview of the process. And yes, that is what Grant's glasses will look like.