The search for a contact

So you may think that Julia has lost a contact and we are searching for it.  (Knock on some wood) That is not what has happened.  Rather, we had to really search to find a contact that fit.  In hindsight - we actually were pretty blessed that it only took about 3 weeks.  Other moms try contact and contact with no luck.

Two weeks after surgery we went and saw the great Dr. H who is the pediatric optomotrist at St. Louis Children's Eye Center.  He is wonderful!  He had gotten Julia's chart the week before and ordered some contacts to try even before he had seen her for the first time.  That first appointment was good and I was impressed by Dr. H's honesty.  He answered my questions with truthfullness and compassion. 
"Will my daughter be able to see?" -  We just don't know.  We are going to treat her as if she is going to gain 20/20 vision.  Only time will tell.

"Is her eye going to grow?  Is it always going to be small?"  -  Again, we just don't know.  Some kiddos the eye grows and you can barely tell it is smaller.  In others, it doesn't.  Only time will tell.

He had contacts to try, but unfortunately Julia's insurance had not come through yet and in order to try them we would have to pay $400 for the contact and the fitting.  He suggested we give the eye another week to heal and another week for the insurance.  It was stressful and I was worried about her not having a contact, but we waited.

The next week, I called before the appointment to see if the insurance had come through.  She had been denied.  I was crushed.  I didn't know how we would keep paying for contact after contact.  I immediately called our benefits person at our employer and the doctor promised he would call the insurance as well.

So at that appointment we paid for the contact and tried to get one to fit.  Dr. H had ordered 3 different silsoft by Bausch and Lomb.  These are the common contacts used in aphakic infants.  We tried the first one and knew there was no way it would work.  You could see the edges lifted all around her eye.  Because of the phpv, Julia's eye is very, very steep so standard contacts won't sit securely on her eye.

He had also ordered a few custom made ones and we found one that seemed to fit, even though it wasn't quite the right prescription.  So we left with that contact but instructions to not patch since the prescription wasn't quite right.  That afternoon was a huge mixture of emotions.  We found out the insurance had approved the contact so we would be reimbursed, but the contact fell out multiple times.  The last time it fell out we found it on the floor next to the end table.  I burst into tears.  I didn't know how I was going to get through the next few years always worrying about the contact falling out.  How would she go to daycare if the contact won't stay on for more than an hour!  I lost it and sobbed in James' arms.

I emailed Dr. H and told him the contact wouldn't stay in and could he order a different one.  He did and in the meantime we kept her contact out.

The new one arrived a week later and it was the steepest curve the company could make.  A normal eye has a base curve of about 40 - Julia's was measured at 60.  Her contact is literally custom made to specifics just for her.  This one was also a little bigger, so it stayed in better.  We went home and started the patching journey.

 Amazingly, the contact has never fallen out (knock on some more wood and say a few prayers).  Other than some sickness that lead to an eye infection (more on that later), Julia has been wearing her contact for about a month.  We patch for an hour a day and see the fabulous Dr. H in a few more weeks.  Patching isn't easy - she gets pretty grumpy and clingy when patched.  But we keep on going knowing it is our only chance!

Some Pics

So I found a few more pics that I wanted to share - some pics that document the beginning of our journey with Julia's eye.

Here is a pic from right after surgery:

And the one right above is once we got home. 

And even before surgery - you can really see the cataract in these photo:

And this is a few weeks after surgery.  Because we couldn't get a contact right away and couldn't start patching, her eye started to turn inward. 



Pink Eye

I am taking a break from writing about the beginning to catch everyone up on today.  First let me start by saying that I have the most amazing day care provider.  She is wonderful and loves my children.  I feel totally comfortable with her and trust her.  She has been great about helping with Julia's patching, making sure her contact stays in and doing tummy time and other things suggested by Julia's OT.  And Julia and Jed love being with other kids.  That is what is so wonderful about day care.  Jed and Julia are surrounded with other children and are learning social skills and playing with "friends."

But that is also what is so negative about day care - there are other kids there.  I know I cannot shield my children from every germ, but there are definitely more germs at day care with 10 kids than if we stayed home secluded in our own house. 

So I was scared silly yesterday when my wonderful day care provider informed me that one of the kids went home with pink eye.  Really, pink eye!  Like we haven't been through enough in the past month with an ear infection and sickness for Jed, and cough, RSV (with hospitalization) and pneumonia for Julia.  With the RSV Julia got an eye infection and iddn't wear her contact for a week.  She had to do antibiotic eye ointment 3 times a day.  Now she has been exposed to pink eye and I am terrified.  I don't want her to get infected because every day of no contact is a day of lost vision (at least that is how I see it).  Plus it is just uncomfortable to do more drops and I feel badly that my little girl has already had to endure so much when it comes to her eye.

So I am praying that she doesn't get it.  Our day care provider was awesome and immediately segregated the kids and disinfected everything.  And since Julia is so little, she usually doesn't come into physical contact with the other children or even the toys.  So I am staying positive.  But if you have a minute or two, say a prayer that pink eye doesn't visit our house!

Surgery

Julia's surgery was scheduled for December 22nd.  At first, she was an emergency add-in to the surgeon's full schedule.  So for several days we did not have a time for the surgery because she was going to be "squeezed" in.  The day before surgery, we got a call that the doctor had a cancellation and they were re-doing the schedule.  She was the youngest patient, so she would be the first surgery of the day.  I trusted the surgeon as he was the best in the area (people fly in all the way from California to see him) and he does this type of surgery all the time.  Julia could not have any formula after 2 am, no liquids at all after 4 am and we had to be at the hospital at 6am.

Children's Hospital is wonderful!  Everyone was so friendly and helpful and supportive of the parents.  My mom went with me and James for the surgery.  We got there, checked in and were taken back to a room in the day surgery area.  Julia was put in a little gown and she had to have 2 different drops in her eyes three times - 5 minutes apart.  She was amazingly happy.  Here she is on the hospital "crib":

When they came to get her for surgery, I was so scared.  I won't lie and say I was strong - I wasn't.  I cried as the nurse carried her away.  They told us it would be a couple hours depending on what they found.  They were doing a EUA (exam under anesthesia), a lensectomy and vitrectomy.  They did the iv after giving her some gas so I didn't have to see that.  Thankfully, they were back to see us in about 1 1/2 hours.  The doctor reported that everything had gone really well.  They had removed the cataract and when they went to take out the "stalk" it had just fallen away.  It was still attached at the back of the eye, but the retina was good and he was very optimistic about her regaining vision in that eye.  I was so happy!  The surgeon came and told us basically the same thing as the other doctor.  Then the nurses came and told me the best news - we could go back to recovery and see Julia.  We went into recovery and she was all swaddled and cozy.  We carried her back to our room and she started to wake up.  We fed her some pedialyte and some formula.  Since she kept that down, we were able to go home!  She had an eye shield that had to stay on until her appointment the next day, but I could tell that her pupil now looked black and normal!



She actually was fine the rest of the day!  We planned to go back to Children's the next morning to have the shield taken off and have her eye looked at.  We weren't sure when she would be getting her contact but we were hopeful that it would be soon.  I was just glad to have the surgery behind us so we could move forward and start saving her sight!

Google is not always your friend

After the appointment with the Eye Clinic, I started googling everything I could about PHPV and cataracts.  It was awful.  There is very little information out there about PHPV and most of it is pretty grim.  I read about micro-eyes, prosethic shells, blindness.  It made me crazy!  However, I did find some wonderful blogs from other moms that helped me put things into perspective and realize that I would adjust to this new "normal."  I found cute patches and tips for putting contacts in infants.  But deep down I was petrified.  I was afraid of what they would find in surgery - would the retina be okay, would she be able to see?  These questions wouldn't leave me.  I basically ran on auto-pilot for the week in between her doctor appointment and the surgery.  So my advice to others - limit your google!  Not all the information applies to you.  Take what does and forget the rest!

Appointments

Julia went for her 2 month well-baby check up on Dec. 13th.  I was still worried about reflux and her screaming, but I did mention to her doctor that her eye looked "funny."  She looked at it with a light and agreed that something was wrong.  Suddenly the appointment was all about "the eye."  No more was said about reflux!  She explained that she would be calling a pediatric opthmalogist in the morning to try and get Julia in quickly.  She mentioned cataract and other problems, but I honestly was in such a daze that I don't remember.  The doctor even mentioned that she never sees anything like this and asked if the new nurse practictioner could come and take a look.  I knew then that whatever was wrong with Julia was serious and I started to get scared.  She had her 2 month vaccinations and I took her home.  On the ride home, I remember calling my parents and crying that something was wrong with her eye.  I knew it had to be something serious because they don't send you to a specialist the very next day for routine problems.  My mom and dad were reassuring, but I was nervous.

The next day I got a call at work from St. Louis Children's Hospital Eye Clinic asking me if I could have Julia there at 10:30.  I didn't want to go alone, so my dad went with me.  I am so thankful he was there so that I had another set of listening ears.

Julia was examined by a fellow and he immediately told us that she had a cataract in her right eye.  He explained that your lens in your eye is shaped like an M&M and the inside of hers was cloudy.  They would have to remove the front of the lens and "suck out" the cloudiness.  She also appeared to have a "stalk" in her eye that they would try to remove as well.  Her eye was also smaller than the left eye.  I asked if surgery was the only option and he said that we could not do surgery, but that she would never see out of that eye.  At the moment, she was completely blind in that eye.

They did several tests that day - lots of lights shining in her eye, drops and even an ultrasound.  They determined that the blood vessels that form in utero to develop the eye had not dissipated.  Instead a "stalk" was left and it had caused the cataract.  She had PHPV (or PFV).  They wanted to schedule surgery right away as she already had not had any brain connections with that eye for 2 months.  The doc explained that they wouldn't know the extent of the involvement of PHPV until they were in surgery because right now they couldn't see to her retina because the cataract blocked the way.  After surgery she would have to wear a contact lens (CONTACT - did you say contact in an infant?) and patch to force the brain to connect with that eye.

I know there were a lot of questions I should have asked during that appointment but I was stunned and shocked and scared.  We scheduled surgery for the following Thursday - Dec. 22.  Right before Christmas.

The beginning - part 2

So I am starting to realize that it is going to take several posts to catch everyone up on little Miss Julia! She has been through quite a lot in her four little months. Here is the next installment:

We brought Julia home from the hospital and I was DETERMINED to breastfeed. You see, it hadn't worked with my son Jed, and I really, really wanted it to work this time. So I nursed and nursed and nursed for those first few days. And she lost weight. So we started supplementing and I pumped and pumped and nursed and nursed. And she still lost weight. So I started taking suppplement after supplement and reglan and still nursed and nursed and pumped and pumped. And she still wouldn't gain.

After 3 weeks of craziness, I saw a lactation consultant. She weighed Julia, then I nursed for 45 minutes, and then she weighed her again to see how much she had eaten. Guess how much? ONE measly ounce. All those times she was nursing and nursing, she was getting next to nothing. I was devastated and relieved at the same time. I knew in my gut that I wasn't producing anything, and it was nice to have that validated. Even the lactation consultant was stumped as to why I wasn't producing. I am just one of the very few women who have no supply. So we switched over to formula.

When we made the switch (at about 3/4 weeks old) I noticed that Julia was very fussy and would scream. For hours. So at her one month appointment, I asked about reflux and we started some meds to try and help her. I guess I should have noticed her eye at this point, but my focus was to get her to be comfortable and stop screaming. We switched bottles, switched formula, and nothing really helped. You can see from this picture that her right eye did not have a "red reflex" which is a sign of a cataract. The eye looks "cloudy."

I guess I should have noticed that her right eye looked different, but I didn't. I was so focused on her screaming and reflux. I can honestly say that I was at the end of my rope - we tried everything. At about 6 weeks we saw the doctor again to switch medicines in hopes of getting her reflux under control. She was put on prevacid and carafate. It helped some, but she was still pretty miserable. Right after this appointment was when James and I noticed that the pupil in her right eye looked like a "mirror" and was different than her left eye. We talked about it, but decided to wait until her 8 week appointment to mention it to the dr. I didn't want to be that "neruotic mom" who takes her child in for every bump and bruise. The one time I decide to not go to the doctor is the one time I should have!

The beginning - part 1

So where do I start? A little about my family. James and I have been married almost 3 years. Our son, Jed, is just about 22 months old. He is a joy, a jumper, and a handful! We found out we were pregnant with Julia when he was 10 months old. We were excited and nervous. I was even more nervous when we found out she was a girl! I knew how to handle a boy - having a girl was a whole new monster.

My pregnancy with her was little more eventful than my pregnancy with Jed, but nothing major. I had a bit of spotting and got a weird salivary gland infection in my mouth - but that is it. I went into labor on a Friday. It was rough because James had just been in the hospital for pancreatitus and couldn't drive me to the hospital. My mom drove me. I was 3 cm so I walked for an hour. Not much changed so they sent me home.

Overnight, the contractions picked up. By the morning, they were strong and painful. James drove me to the hospital and i was a wreck! At one point, I actually jumped out of the car and got in the backseat so I could be on my hands and knees. I was begging him to drive faster! When I got to the hospital I was 4 cm and got my epidural. An hour later I was 6 cm and another hour later and she was born. It only took one push for her to enter the world (probably because I sat at 10 cm waiting for my doctor because of a bad accident right outside the hospital). She was perfect! She had a beautiful head of dark hair and was 7 lbs 1 oz. We started breastfeeding and enjoyed our time in the hospital - even though I missed my son.

They didn't see anything wrong with her eyes in the hospital. She was discharged normally and came home with us. It wasn't until several weeks later that we noticed something was different with her eye.

First Post!

So, I have decided to start a blog to share my journey. I have gotten so much support and encouragement from reading other blogs, that I figured I would put my story out there too. Well, not my story, it is more the story of my beautiful daughter, Julia. She is my little diva! She was born with PHPV (or PFV) which is Persistant Hyperplastic Primary Vitreous. This caused a cataract and blindness. Our goal is to now help her save her sight! This involves patching and a contact. I'll share more later - but this is at least a start!