surgery day

Well, it's over. And I can't tell you how relieved I am! We didn't have internet access at the hospital (they have wi-fi, but we had a weak signal in our room, so I couldn't connect), so I couldn't blog yesterday. So this is how it all went down.... 


We were scheduled to arrive at the hospital at 7am for the surgery to begin at 830am. It was expected to last an hour and a half. We took Tate back to the pre-op area to get his hospital gown on (and he was NOT a fan, let me tell you!) and give him some cuddles before his surgery. We met with the anesthesiologist there, and got to sign the paper that says that I understand that a risk of anesthesia is death. I hate that form. I mean, I know I have to sign it, but I don't have to like it. Anyway, the nurse anesthetist brought Tate a cool little red wagon to ride to the OR in around 845am, but Tate wasn't having any part in that. So Rocker Birdie (Tate's hospital buddy) rode in the red wagon with his quilt, and Tate was carried off by a nurse, while yelling for his Mommy. Not my favorite part of the day. That, I am proud to say, is the only time I cried yesterday. I do admit to getting a little teary while waiting for his surgery to be over, but I wasn't the blubbering mess I was during his last surgery. Small victories, people... small victories. 


This is the last photo I took of Tate's eye before surgery... The purple "K" above his eye marks the eye that they're taking out. I'm glad that's a system that works!

So we went to wait in the adult waiting area primarily because you can eat on that side. (Yes, I have my priorities.) My awesome mom made muffins, and brought apples and bottled water, so we wouldn't have to leave the waiting area to go get food. We got a call at 915am saying that they had just started, and that intubation and everything anesthesia-related went well. 


My brother came to the hospital before work to wait with us for a while. My parents were also there waiting with us. This is my brother, Ted, on the left, Todd on the right. 

I had been told that we'd get a call every hour to update us on the progress of the surgery, so when we were called to the pediatric waiting area at 1015am, I walked straight to the phone at the desk to wait for the call, barely noticing our surgeon standing there waiting to talk to us! I was confused as to why he was out there at first. I just remember saying "It's over? It's really over?" And I'm pretty sure I didn't mean the surgery. This long journey, this journey that we've been on for 4 1/2 years.... it's over. Finally. Ok, maybe not completely over, but this huge hurdle that I've been dreading for 2 months... this was such a big part of it. The beginning of the end. So our surgeon, Dr Y, proceeds to tell us that this is something we will never regret. The eye had degenerated so much, that he said that without a doubt, we had absolutely made the right decision. Phew. I mean, I knew that. You've seen photos... you've heard stories. You know what we were facing. But it gave me so much relief to hear it from the guy who saw his eye, the whole thing, that we had made the right gut-wrenching decision. Wow. Thank you, God. Dr Y told us that they were taking him to Recovery, and we'd get to see him soon. An extremely long HOUR AND 45 MINUTES LATER, we finally were told he was waking up and we could go see him. The extra long nap may or may not have been from us keeping him up til midnight the night before his surgery. I couldn't really say. But when we walked to Recovery, he was sitting up (kinda) and drinking Sierra Mist. He looked good. He had a bandage over his left eye. He was quiet, but responsive. His bed was then wheeled up to his room, and we followed along, praising God that his surgery went without complications! 


Here is Tate, post-surgery, sporting the beautiful quilt that the sweet people over at Quilts of Compassion made for him before he went into the hospital back in August in Michigan. He was able to take the quilt and Rocker Birdie into the OR with him.

Getting some love and attention from his Nana right after we got settled into his room

The surgeon removed Tate's eye, inserted an implant behind the lining (the pink area like you see on the inside of your eye lid) and attached the muscles to it. They closed that lining, then inserted a plastic conformer in place of the eye (as a spaceholder while the eye socket heals). In 6-8 weeks, we'll travel to Burlington to visit the occularist to have his prosthetic eye made. 


Tate had lots of visitors yesterday, and he enjoyed every minute of the attention. He even ventured to the playroom with his brothers and his best buddy Aiden for about 15 minutes. He was worn out after all the visitors came, so he finally dozed off around 530pm. His friend Bri's amazing mom, Lori, brought us dinner and some yummy cookies to the hospital room. Tate slept through dinner, but he enjoyed his Happy Meal for breakfast this morning. :) Todd and I watched a movie last night while Tate slept, then dozed off ourselves. Tate slept until 730am today. He hasn't had any pain meds since the IV bag around 1230pm yesterday. I was concerned that it would wear off at some point during the evening last night, and that he'd wake up screaming in pain, but that never happened. I had a feeling that whatever pain he was experiencing prior to surgery might be just as bad or worse than post-op pain, and it looks like I was probably right. He still hasn't complained of pain, and when I asked him earlier today if his eye hurt, his answer was "Just a tiny bit." I can live with that, especially considering that I was told to expect significant pain for 4 days, and also because we know that this pain will end.

 Spoiled much? :) He got lots of fun gifts from friends who visited. 

Chilling...

Grandma was making him peanut butter graham crackers on demand. He loved every minute of it.

Checking out the playroom... he only lasted about 15 minutes, but we were surprised that he was up for it at all!

We were discharged this morning around 9am, and we go back Saturday morning to have his bandage removed. I'm not looking forward to that. I can see some drainage on the bandage, so I can only imagine what his eye must look like. We'll learn how to take care of the eye area while it heals, and I'm assuming that we'll get more information about our upcoming visit to the occularist. 


Overall, I'm relieved. That pretty much sums it up. I'm happy that the surgery went as well as could be expected, and that his pain level so far is so much better than I expected. As I was texting friends and family yesterday to let them know when he was out of surgery and that all went well, the response that I got most was "Yay!" I know why they were saying that. I really do understand. I was also super relieved that all went well... but I just felt like I couldn't celebrate that my kid's eye had just been surgically removed. I thank God that He was watching over my boy, and that we have gotten past this part of the journey. I don't want anyone to think for a second that I'm not thankful for Tate to be so close to pain-free, because I really am. And I'm hoping that very soon, I'll feel like REALLY CELEBRATING this part of the journey. 

letting my secret out

Tate's surgery was originally scheduled for January 21st. We booked that date back on November 17th. It was so far away... it was like a light at the end of the tunnel, but it was far enough away to seem like maybe it would never really happen. I guess that's my secret... hoping that it would never really have to happen. This has been such an emotional rollercoaster for the last few months. After 3 years of everything going smoothly, we figured that the possibility of eventual eye removal was just something they have to tell you so they don't get sued. 


I know God will take care of us. I know people are praying for us... for peace, for comfort, for God to carry us through this. We had the absolute pleasure yesterday of meeting David and his family. They showed us that it will all be ok. Things will be normal again. A different kind of normal, but our new normal. I KNOW that with my brain. But my heart... it feels like it's breaking into a thousand pieces. I just want to make it all better. Not by having my son's eye surgically removed... I want him to keep it and still be pain-free. When I first told him a few months ago that we were going to have to have his eye taken out so it won't hurt him anymore, he said "Please, Mommy, don't let them take it out. I want to keep my eye, but I want to be able to see out of it!" That's what I want for my son. I haven't lost my mind, I know that isn't going to happen. I know that we will go through with the surgery, his pain will finally be relieved, and we'll get used to caring for him a little differently. It just SUCKS. Can I say that without worrying that people might think I'm not strong enough? I know that in the grand scheme of things, losing an eye isn't a huge deal. It's just an eye, it's only one of his eyes, his condition won't spread to other parts of his body, and it's not life-threatening. But he's my kid. And it sucks. When you're a mother, your whole world is turned upside down. As a mother, you love your children so much that sometimes it physically hurts. You are responsible for this beautiful work of art that God has given you to care for. He does not belong to you, he belongs to God. But God has entrusted you with this precious child, and you are there to love him, protect him, and raise him in a Christian home. And no matter what, you NEVER want to see him hurting. I wish this hadn't happened. But I think I know one reason why it has. It has forced me to lean on God more than I ever have in my life. I have needed God, been on my knees in His presence, talked to God, leaned on Him, collapsed into His loving arms more than ever before. I know God has more purpose in this than bringing me closer to Him, but God amazes me with the way He always gives us that bright side. When things seem like they can't get any worse, He shows us that His hand is always in it. And for that, I'll always be thankful. 


In other news, it looks as if Tate's surgery is being moved up. For those of you praying for a cancellation, THANK YOU! I got a call from the hospital this afternoon telling us to prepare for January 12th. I was crying on the phone with the receptionist who called me (they're probably getting used to that by now) but I was relieved to know that my son's pain would be eased a little sooner than we originally thought. I called Todd at work to tell him... he seemed glad to hear the news. I remember saying, "This is good, right?" He said "Yeah, of course." I asked him, "Then why am I crying?" That's when I realized what my secret was. This rollercoaster journey went from surreal to very real in a flash. Hold on tight, it's about to get crazy. 

puppy dog patches

I think I mentioned a while back that I ordered a cute little puppy dog paw print eye patch for Tate, per his request. Have I mentioned that he's refused to wear it? Yes, in perfect stubborn-4-year-old style, he has refused to put on his hand-picked eye patch. I'm not delusional, I know it's a big change. I have only encouraged him to wear it so far for a few minutes each day so he can get used to it... after all, he'll be wearing it quite a bit here in just a few weeks. We got cloth patches to avoid irritating his skin with the Orthopads or other similar sticky patches. You can tell him all day that he'll be cool like a pirate, but still no dice. 


I blogged yesterday about being concerned about his sensitivity to light. We did start him back on the drops, and put a call in to the doctor's office to see if they have any advice on the issue, or if we can even move Tate's surgery up under "emergency" circumstances. I have a hard time feeling like it's an emergency, because it seems like more than half of his day, he is playing and having fun with his brothers. I do know he's in pain, even through those times, because of the way he's constantly messing with his eye, pushing his fingers into it, and leaning on his palm with it. But until it's affecting daily life, I don't know that it really constitutes an emergency. Not that it matters today... the surgeon is on vacation until next week. Maybe we'll get a call then that they can work him in... I definitely worry about it some days more than others. 


ANYWAY... back to my point. Yeah, I tend to get off track sometimes. Since no one seems to have any good advice on dealing with light sensitivity, I thought this might be a good time to enforce patch-wearing... figuring that if anything helps, that will. So I explained to Tate last night that I expected him to wear his patch for at least 15 minutes today. I told him that I want to help his eye not hurt from the light. He complained complied, of course. I put his patch on him at 11:30 this morning. We watched Jake play Epic Mickey on the Wii. I had to hold Tate's hands for a while, because his instinct is to pull it right off. After a few minutes, he wanted me to let go of his hands, which I did. And he was fine. He didn't mess with it, except to adjust it a little. I bribed rewarded him with brownies, and he got to help me make them. He kept his patch on during this adventure, so in typical photographer-mom fashion, I snapped a couple of quick photos for your enjoyment. 

He really had to summon his Spidey strength to stir that brownie mix!

Please ignore the bed-head. It is still Christmas break, you know. So you want to know how long Tate wore his patch? TWO HOURS! Then he came to me right after he pulled it off and said "Mommy, is my 10 minutes up yet?" I really need to teach that kid how to tell time. Maybe later. :) 

finally!

So Tate was having some swelling and some pain this morning... enough to actually voice it. Although this is always a dead giveaway that he's hurting... 

He presses the palm of his hand into his eye and leans on it that way. That's what helps to relieve the pain for him. This is what I noticed first this morning. So I asked him if he was ok... he said his eye was hurting. Not a good sign. His baseline of pain is quite a bit higher than you or me, so if it hurts enough for him to complain about it, it REALLY hurts. I offered him the bubble-gum flavored chewable Tylenol that he picked out at the store last week. Of course, he refused it. I finally got him to try one (his dosage is 3). He chewed for a few seconds, then made the face of disgust (completely intentional on his part. I really don't think he minds the meds, it's just one of his control issues). It was actually kinda cute. :) It took quite a bit of deal-making to get him to take the other two, but finally, he chewed them up (after I served them to him on a spoon out of his oatmeal bowl, per his request.) I asked him a little while ago if his eye was still hurting or feeling better... he said it was feeling better. I asked him if that meant that the medicine helped, and he said that it did. Yay! Hopefully this is a breakthrough that he will remember. 


Here are a couple more photos from this morning... 




Not feeling too good... :( 

He still managed a smile for me though! I just love his sweet face... 

Thank you for praying for my boy! I hope you all have an amazing Christmas! We'll be spending time with family, enjoying His blessings, and celebrating Jesus! Merry Christmas!

I don't belong in Vegas...

... I don't like to gamble. The thing about Tate's eye condition is that it's pretty rare... there is no "normal". I mean, they kinda know what to expect with a typical PHPV case, but when things go a little haywire like they have with Tate, it's hard to predict a timeline on the rest of it.


When we arrived at the surgeon's office yesterday, it was the first time we had met him. He began by telling us that he doesn't perform an enucleation (eye removal) on children unless it's absolutely necessary. He went on to explain how removing the natural eye can affect facial structure as he grows (I keep picturing the guy from The Goonies, which I know isn't realistic, but I just can't get past it). He also described the two methods of replacing the eye... either a plastic sphere or a butt-fat graft (yes, I'm aware that's not the technical term, but it's how I remember it) that would be sewn in and attached to the muscles, over which would fit his prosthesis. With the sphere, we risk Tate rejecting it since it's a foreign object, and "spitting it out". But with the butt-fat graft, even though it should be better accepted, we face a possibility of graft failure. So at this point, Dr Y asks, "So what would you like to do?"... hmmm... I think I'd like to jump of a cliff now, thankyouverymuch. 


We have hit brick walls every step of the PHPV path. Most PHPV kids have anterior or posterior... Tate has both. Most PHPV kids have at least some vision out of their PHPV eye. Tate has none, and no chance of regaining it. Most PHPV kids don't ever have a problem with pressure... Tate has neovascular glaucoma. Most PHPV kids don't experience eye degeneration... Tate's started with band keratopathy (the calcium deposit over the cornea that makes him feel like something is in his eye) and has a bone growing in the back of his eye from calcium deposits, which causes him pain. So forgive me if I'm not 100% confident that the enucleation and prosthesis will go on without a hitch. I have this "What else?" attitude right now, and I just can't seem to shake it.


So back to my gambling analogy.... as I said in a previous post, Tate hasn't been complaining of pain much at all in the last 2 weeks or so. As far as I'm concerned, that's a God thing.... an answer to hundreds of prayers. I don't believe Tate is completely pain-free right now though. I do believe that his baseline for pain tolerance is a lot higher than yours or mine. So since he's not having additional pain right now, he's happy. Considering it wasn't that long ago that he was in enough pain to say that it hurt a lot, I'm happy too. So with his pain being bearable at the moment, we had to decide if maybe we should wait on the surgery.... give him that extra time to let his facial structure develop, so any asymmetry that might result would be lessened. But if we wait, we risk having to do it in "crisis mode" in the middle of the school year, disrupting his life quite a bit more. Or we go ahead with the surgery now, to relieve the pain he has, and we risk my kid looking like the guy from The Goonies when he's 19, and hating me forever because we jumped the gun on the surgery. Ok, ok... I know that's a little extreme, but I'm feeling pretty extreme these days. The point is that we don't know how long we'd have before he'd lose the eye due to it shrinking up and having to be removed, or the pain being intolerable. We don't know, the doctors don't know, no one knows except God. I explained to the doctor that we knew that removing his bad eye was inevitable, and I'd just as soon have it over with before he starts school in August. The doctor agreed with me that that's a benefit to doing it when he's young... kids aren't quite as mean at that age. When I asked him at the end of our appointment what he recommended, he said "If I thought that my child was in any pain, enough to affect his quality of life, I'd take it out." I appreciated his answer and his honesty, but I was still torn about letting my kid look like Sloth.


So what do we do? Well, I take the advice from a friend and ask my four year old what he wants to do. Yes, I've resorted to leaving a life-changing decision to a guy who entertains himself with Mickey Mouse Clubhouse every morning. I asked him in a hundred different ways, and his answer remained the same... "I want the doctor to take my eye out because it's sick and it hurts me." Me: "But when I've been asking lately if it hurts, you keep saying no." Tate: "No.... I've been saying it always hurts a little bit." Me: "So it's hurting now?" Tate: "No, it's not hurting now." Yep, that's pretty much how it went. So I had Sarah talk to him today too... She had almost an identical conversation with him. But it did make me feel better to know that he's more than ok with this surgery, he's actually saying he wants to have it done. He tells me he doesn't want his eye to hurt anymore. That's all you had to say, Tate. His surgery is scheduled for January 21st.

Tate's Story... PART THREE

Tate was pretty good about taking his drops... most days. They seemed to take the edge off a little, but never really took the pain away. We continued to stay in close contact with our PO, and had to change drops after a while, trying to find something more effective. We also found out that he has calcium deposits forming a bone in the back of his eye, which we were able to see on an ultrasound. That is the cause of at least some of his pain. Tate was still constantly rubbing his left eye (which we are told relieves the pressure and pain), so after a week of being called by his preschool twice (like I had asked them to) because he was complaining of pain, I made yet another appointment with our doctor. 

At this appointment, I asked the big question.... If it is inevitable that he is going to have to have his eye removed at some point, what are we waiting for? After all, it's causing him pain. This may seem like an obvious question to some of you, but let me tell you... as his mom, it was not an easy one to ask. The PO then began to tell us that neither decision (having the enucleation performed or waiting) was a bad decision, but that there could be complications with a prosthesis, and that we might be trading one set of problems for another. He may be allergic to the material that the prosthesis is made of, his eye socket may not take well to having a "foreign object" in there and may become runny or excrete mucous. We realized we had not considered this when we were talking about how it might be easier to have the painful eye removed. So we had something else to work through. Our doctor made it clear that it was our call on whether to have the enucleation done now, or wait until the pain was worse and more constant. Because we really didn't know which way to go, he suggested we make a consult appointment with Dr Y, the surgeon. 

Since we couldn't get an appointment for four weeks, that gave us lots of time to think, talk, and pray (not necessarily in that order). We decided that if he was eventually going to have to have the eye removed, we'd like to do it on "our time". We are going to have to arrange help with the other boys (Todd's mom will be coming down from Ohio to help out), and we'd like to be able to prepare for this huge event, rather than have to do it all in "crisis mode". So we decided that when we meet with Dr Y, we would tell him that we'd like to go ahead with the surgery. 

So yeah, right around then, Tate stopped complaining of pain. You have no idea how much easier it is to say "Just take the eye out" when he's in pain, rather than when he's not. I questioned our decision that we had made. Did we still need to do it? Was this lack of pain a sign of God giving us the miracle we had prayed for four years about? Were we jumping the gun with this surgery, and not giving God time to heal Tate? We knew we couldn't control when Tate would need the surgery if we decided to wait, so we were hesitantly standing by our decision to go ahead with it. We wanted him to be used to his new normal in time for kindergarten in August. I trusted that Tate's lack of pain was from the hundreds of prayers that had gone up on Tate's behalf to relieve him of pain and discomfort. Because I was still hesitant about our decision as the days went by, and Tate was not complaining of pain or rubbing his eye, I prayed to God that we would have some sort of clear sign to point us in the right direction. The next day, I noticed Tate's eye looked worse. A lot worse. The whites were pretty red, the iris was a discolored grayish brown, even more cloudy than usual. It looked like it hurt. But it didn't. Not according to Tate. Of course, this is the kid who has a high pain tolerance, and who had an inkling that we were talking about having his eye removed, so he probably wouldn't admit that it hurt, even if it did. I appreciated God showing me that we had made the right decision without causing my sweet boy any more pain. That was exactly what I needed. 

Tate's Story... PART TWO

We saw our PO very often in that first few months of Tate's life. We were able to hold off on his first surgery until he was four months old. It was October 9, 2006. I remember the date because that's where Todd and I spent our 7th wedding anniversary. Our PO and a Retinal Specialist performed a vitrectomy (coring out the scar tissue to "clean up" his eye, and a lensectomy (removing the lens with the cataract). Tate did fantastic with the surgery. He wore a big metal shield over his left eye for a while, but healed up nicely. The hardest part was putting him in arm braces for the first week or so to prevent him from messing with his eye. After healing from his surgery, we only saw our PO periodically to make sure everything was well with Tate. We started him in the Early Intervention program with our local CDSA (Children's  Developmental Services Agency) and they set us up with a wonderful case manager, and had a therapist come once a week to work with Tate on fine and gross motor skills, and special things for kids with monocular vision, like his depth perception issues. We continued to see our PO and we were just to watch for the eye "deflating" or any signs of pain. But Tate was doing fantastic... 

Until this summer. A couple of days after we returned from our summer vacation, Tate was sick... vomiting, and generally not acting himself. He told me that his eye was hurting a little bit, and he was rubbing it a lot. I called the POs office, and we were able to get in that day. Tate's eye pressure was supposed to be 12-14. It was 40. The PO said that his eye was giving him more than "a little" pain with pressure like that. That's when we first realized what a high pain tolerance our little guy has. The vomiting was from the high pressure in his eye, so they immediately started him on drops, right there in the hospital. He had neovascular glaucoma. This was a bad sign for a kid with PHPV. I was also told that Tate had band keratopathy, which is calcium being deposited on the cornea, occurring in a band pattern. That's the day the doctor first told me that his eye was beginning to degenerate and it would eventually have to be removed. I will never know why I didn't think to have Todd go with me to that appointment. It was a difficult drive home, blinded by tears once again. 

We had been told that we didn't have to do anything right away... we were going to see how the drops worked out for him, but were warned that the drops typically eventually become ineffective. We were told that Tate's eye could last weeks or a decade before having to be removed. We just had to wait and see. Typically with a degenerating eye, the pressure would get really high (as it was), then drop really low, and the eye would begin to shrink, and have to be removed. 

On our yahoogroups PHPV support group, I had heard about a world-renowned specialist in Michigan, a little over an hour from where my mother-in-law lives. He is the go-to guy in this rare world of PHPV. People literally fly from around the world to come see him. When someone talks about removing your child's eye, it's hard to just take their word for it and not question it at all. We trusted our PO completely, had every confidence in him. I think the biggest reason that we went to see Dr T in Michigan is that I didn't want Tate ever to feel like we didn't do everything possible to save his eye. Dr T concurred with our PO completely and said that when the glaucoma was out of control, it wouldn't be a bad decision to remove the eye. He said there are some painful treatments we can try to treat glaucoma that might prolong the life of the eye, but he wouldn't blame us for not wanting to put our child through that pain in the hopes that science would develop something to help him regain vision while we were stalling. We also found out at that visit that Tate's right eye (yes, his GOOD eye) contains five meridional folds in his retina. These are basically holes in the retina that make it much easier for the retina detach with an impact. We're not signing him up for those boxing classes after all, I guess. :) 

everything you wanted to know... PART ONE

...and some that you probably didn't about PHPV (Persistent Hyperplastic Primary Vitreous). We are about to end a journey that we've been on for over four long years. Many of you have asked about Tate's eye condition, how we found out, how it affects him, etc... I don't mind at all when people ask about it. I wish I had started blogging or journaling about it from the beginning, but hey, hindsight is 20/20, right? No pun intended. Anyhow, I thought I'd give a little history on Tate's condition to catch us up to date, as we are meeting his surgeon tomorrow... the one who will be removing his eye.


When I was pregnant with Tate, we decided to sell our house and build a new one. Yes, I probably WAS crazy. We did things a little backwards, but it all worked out. We signed the contract on our new home, broke ground, and THEN we put the house up for sale by owner, stuck a sign in the front yard, and I had it under contract 26 days later. Too fast! We ended up in an apartment for three LONG months while they finished building our new home. So yeah, being in a temporary living arrangement isn't ideal when you're bringing a new baby home. Especially when it's already not under ideal circumstances.


I had Tate around 730am on a Monday morning after laboring all night. I was worn out and ready to get to our room in the mother/baby unit. I was happy to find a note from the pediatrician who had done rounds already, telling us that Tate was just perfect. So we enjoyed the day with our beautiful baby boy. Todd mentioned a couple of times that he wasn't opening his left eye much. I brushed it off with a "He was just born, give the kid a break." At around 1015 the following morning, we were called by a nurse to tell us that there was a problem with Tate's newborn eye exam, and that a doctor would be coming to speak with us, but to be ready to check out right away (a day early) and head to Baptist. The next couple of hours is a bit of a blur. I remember trying to joke around, saying "Hey, I have two little kids at home... I get another night here!".. but I quickly realized they weren't kidding. They did not get a red reflex in Tate's left eye during his exam, and I was told "It could be bad, or it could be worse." We were discharged by noon, and headed to Baptist Hospital to see Dr W (our Pediatric Opthalmologist) to find out what was wrong with our son's eye. I'll never forget how tiny he looked on that big hospital bed. I'll also never forget when Dr W told us that Tate was blind in his left eye, and he would not regain vision. They did an ultrasound on his eye, and confirmed PHPV. I don't really remember much else from that appointment, other than looking at my tiny day-old baby on that big bed, and crying my eyes out with my husband. Oh, I do remember one more thing... I remember when our PO told us not to worry, there is no surgery necessary right away... "We can wait a week or two," he said.


By the time we left Baptist, we couldn't remember the name or initials of Tate's condition. We had a checkup with the pediatrician the following day, and thankfully, the pediatrician called Dr W and asked for the name of the condition, and general information. The pediatrician had never heard of it, so she asked our PO how often he sees it, to which he replied "About once a decade." I knew that if I couldn't control what had happened to our son, I could at least arm myself with information. Google, here I come.


So here it is. When an eye is developing when the child is in the womb, temporary blood vessels develop to form all the parts of the eye, then the become clear and dissolve, becoming the vitreous. PHPV develops when the temporary blood vessels don't dissolve, therefore don't become clear, and that hazy vitreous blocks the light passing to the retina in the back of the eye. Most kids have anterior OR posterior PHPV. Tate has both. This stalk of scar tissue also detached his retina leaving him blind in his left eye. The retina was encased in scar tissue, eliminating the option to reattach it during his first surgery. He also had a cataract. There are no normal structures in Tate's PHPV eye. As Tate's mother, one of my primary concerns was, "What did I do wrong? Did I forget my prenatal vitamin one too many times? What did I do to cause this to happen to my sweet boy?"... the answer - nothing. The PO assured me that it's a complete fluke, and there is nothing I could have done to prevent it.