Post Surgery Update

This is right after surgery......


I took these last 2 pics this morning. She is REALLY swollen! Poor thing. If you click on the pics, you can get a better view of how swollen she is.

Jaiders had the Ahmed Glaucoma Valve put in her left eye this Thursday. She is such a trooper. They put a smaller sized model in this time. This model is the infant model, so she will have to get a larger size put in eventually. She doesn't seem to be as fussy after this procedure, but she has been throwing up. We went for a post-op check up yesterday morning and the doc gave us the a-ok. We have an EUA (evaluation under anesthesia) scheduled for this Thursday -- to make sure that all is still well.

Look who's 3 months old!!!!! (well, a few days ago!)

Visit From Grandpa

Grandpa Dalton came for a visit this weekend! No one was able to calm little Jaiders down all day, but when grandpa came, she was an angel! She hasn't been that good with someone else holding her in a long time! Where has grandpa been all my (well, her) life?

No Worries

Grandma Summers was here (again- bless her heart!) for Jaidin's procedure. She & Jason are in the waiting room.

AUNT COREY CAME TO VISIT! HOORAY!

Aunt Corey explaining to Jaidin why she is already her favorite aunt.....

3 Sexy Chicas!

The reason Jaidin's eye was bleeding was because a stitch had come undone. The docs said that nothing else is wrong!! Hoo-rah! The pressure in her right eye has already dropped from a 30 to an 8!!!!! That means that so far, the valve is doing its job! We are scheduled for a valve installation in her left eye this coming Thursday. All but 2 of her eye drops & 1 eye gel are gone, finished, over!!! Even that stupid oral med that I had to give her every 6 hours is gone!! The docs said that we should see a dramatic improvement in Jaidin's mood and fussiness now that she is off the majority of her meds (b/c she won't be dealing with all of the side effects). This is welcome news for me; these last 3 days have been 3 days of nonstop screaming!

We were so lucky to be graced with a visit from Grandma Summers and Aunt Corey! They brought some much needed excitement and fun! We all had a huge sleepover on the beanbag in the family room last night. Jason lead everyone in a pillow fight. It was great fun!

A Little Scare......

Earlier today I was making some toast when I noticed blood on my shoulder! I looked over at Jaidin and she had dark, thick blood coming out of her right eye. I about died! Bloody tears are normal, but this was fresh, dark blood. Her doc wanted me to bring her in, so we were off once again to primary childrens. When I put Jaiders in her carseat, more blood started coming out! I was soooo nervous! My little baby!!
Well, the doc couldn't get a very good look in her eye, Jaidin is SUCH a fighter! She clamps her eyes shut so tight and squirms all over the place; all the while screaming and crying. It is virtually impossible to get a good look inside of her eyes. Anyhoo, the doc is worried that the valve may have slipped or that something else might be going on, so he wants to take a look at her under anesthesia tomorrow. I guess it will be a little investigative "surgery". She is scheduled for 5 p.m. tomorrow. Keep your fingers crossed that nothing is wrong. The doc said that blood coming out of the eye is never a good thing. Hopefully this was just some fluke incident and NOTHING is wrong.

Looking Good

Dr. Hoffman said everything looks good with Jaidin's eye. He said that he doesn't see any signs of any of the problems that are typical after surgery. Great News!!

Jason & I have decided to wait a week before going ahead with the drainage valve in Jaidin's left eye. We want to make sure that nothing further goes wrong with the right eye, that the surgery in her right eye is successful, and we also want to give her left eye some more time to heal from her first surgery.

They used donor tissue to cover the valve in Jaidin's right eye. It looks like a big chunk of skin is hanging out in there. It will get better as it heals, but the doc said it might always be noticeably different. :( Jaiders still has red/bloody tears coming out of her right eye, but there is already a noticeable reduction in the amount of those tears. She has been more fussy with this surgery; but, it was more invasive than her previous surgeries so I am not surprised.

What is congenital glaucoma??

By definition, primary congenital glaucoma is present at birth. It is characterized by the improper development of the eye's drainage channels (called trabecular meshwork). Because of this, the channels that normally drain the fluid (called aqueous humor) from inside the eye do not function properly. More fluid is continually being produced but cannot be drained because of the improperly functioning drainage channels. This leads to high pressure inside the eye, called intraocular pressure (IOP). An increase in IOP can damage the optic nerve and result in vision loss and eventually blindness.

Another way to think of high pressure inside the eye is to imagine a water balloon. The more water that is put into the balloon, the higher the pressure inside the balloon. The same situation exists with too much fluid inside the eye. The more fluid, the higher the pressure. Also, just like a water balloon can burst if too much water is put into it, the optic nerve in the eye can be damaged by too high of a pressure.

In approximately 75% of cases, primary congenital glaucoma is bilateral, that is, it occurs in both eyes. Primary congenital glaucoma occurs more often in boys than in girls, with boys accounting for approximately 65% of cases.

Primary congenital glaucoma is relatively rare. In the United States, it reportedly affects fewer than 0.05% of children.

Despite the rarity of primary congenital glaucoma, the impact on a child’s visual development is oftentimes extreme. Early recognition and appropriate therapy for the glaucoma by an ophthalmologist can significantly improve the child's visual future and possibly prevent blindness.

Jaidin Update

The first pic is from today, the middle pics are right after surgery. & the last pic was taken right before surgery.

Last weeks goniotomy surgery on Jaidin's left eye didn't work, so we had to go to plan B. Instead of doing a goniotomy on her right eye, we implanted a drainage valve in it. It's called the Ahmed Glaucoma Valve. This valve will allow her eye to have proper drainage and thus alleviate the damaging pressure on her eyes. It's not the route we had hoped to take, but we gotta do what we gotta do. Throughout her life, the valve can slip, get clogged, or get infected. She will more than likely be back under the knife over the years for adjustments and such. We will be going back to the hospital again next week, and if her left eye has healed enough from last week's operation, she will be getting the same drainage valve in her left eye.

Jaidin is such a trooper!! She can barely open her right eye but she has already cracked a few smiles at me today! We went back in to the ophthalmologist this morning and he said everything looks good. He said there is a chance that her eye could become deformed, so we will have to keep checking back in with him every other day. She now has 3 more drops & a gel for her right eye! That's 6 drops & 1 gel @ 3-4 times a day--- EACH drop, EACH eye. EEEGAADSS!!!!!!

The only thing she can have for pain medication is infant's tylenol & ibuprofen!! Can you imagine getting out of surgery and having the dr. give you tylenol to control your pain?!?!?! I would slap the doc in the face and tell him where to go!!

Anyhoo, while we were in the waiting room last night, Jason put together a wonderful post that sums up the surgery they did on Jaidin. I will post it below.

THANK YOU for all of your prayers and support. I don't know what we would do without family! I know all of the prayers on Jaidin's behalf have helped tremendously! Thank you, thank you, thank you!!!

The "Ahmed Glaucoma Valve"

The implant should be examined and primed prior to implantation. Priming is accomplished by injecting 1cc balanced salt solution or sterile water though the drainage tube and valve, using a blunt 26 gauge cannula.



A fornix-based incision is made through the conjunctiva and Tenon's capsule. A pocket is formed at the superior quadrant between the medial or lateral rectus muscles by blunt dissection of Tenon's capsule ffrom the episclera.




The valve body is inserted into the pocket between the rectus muscles and sutured to the episclera. The leading edge of the device should be at least 8-10mm from the limbus.



The drainage tube is trimmed to permit a 2-3mm insertion of the tube into the anterior chamber (AC). The tube should be bevel cut to an anterior angle of 30° to facilitate insertion.



A paracentesis is performed, and the AC is entered at the limbus with a sharp 23 gauge needle, parallel to the iris. Caution: Care must be taken to insure that the drainage tube does not contact the iris or corneal endothelium after insertion.



The drainage Tube is inserted into the AC approximately 2-3mm, through the needle track and parallel to the iris. The leading edge of the device should be 8-10mm from the limbus.



The exposed drainage tube is covered with a small piece of preserved donor sclera or pericardium, which is sutured into place, and the conjunctiva is closed.




NOTE: As an alternative to Step 7, a 2/3 thickness limbal-based scleral flap may be made. The tube is inserted into the AC through a 23 gauge needle puncture made under the flap and the flap is sutured closed.

Surgery Day.....

Surgery isn't until 5:30 p.m., but little Jaiders can't eat past 1:30pm!!!! It's one of the WORST parts of this whole process! She just sticks her tongue in and out, over and over, & gives me these eyes that say, "feed me mamma!" I feel so bad denying her the boob!!!!

"Comments" were disabled, but they should be enabled now........

My own operation on jaiders.....

This is not for the faint at heart.... If you are grossed out by the pic, then don't read this!!!
This picture does not do her fingernails justice. They are getting really infected, and the infection is getting lower and lower on the nail (and thus harder to get to). The brown area is more black than the pic shows. The yellow area is puss under her nail! And, the rest of her nail is getting all wrinkly. So, yesterday, I got a needle and began drilling holes into her nail to let the puss out. It was SOOO scary! This little girl does not do well at holding any part of her body still. The more I try to hold her down, the harder she fights.....
Well, as soon as the needle broke through the nail, puss just started oozing out. If it hadn't been my little baby's nail, I would have thought it was pretty cool to see.
But, the puss only came out of the area right where the tiny hole was. The rest of the nail was still full of puss. I tried to squeeze her nail to make more puss come out, but it just made her cry. So, I was forced to drill more holes into her nail. I've done this little operation once before, so I wasn't as nervous as I was the first time, but I was still very shaky. Anyway, a bit more puss came out, but there is still more down there, and it seems to get worse every day.

I don't want her nail to die! Someone help me! I need ideas and solutions! Her dr.'s are worthless (with this issue)! Her pediatrician told me that maybe if I left it alone it would go away. (Not so, like I said, it is getting worse everyday). He gave me an anti-fungal cream, but, it doesn't seem to do anything. Her hand surgeon who has seen 1,000s of patients with syndactyly has never seen anything like it. He just told me to keep doing what ever I am doing. (Clearly NOT working!!!!) I even tried to google "syndactyly" & "nail infections" and "puss" and a bunch of other random words. ........Nothing! She can't be the only person in the world with syndactyly who has gotten a nail infection!!! WHAT SHOULD I DO?????????

Couch Potato

This cracks me up!!! Jaidin is already fascinated with the t.v!! It’s my best babysitter! Even though it only works for about 5 minutes; you have no idea how much you can get done in 5 minutes when that is all you have!

Day 3 after Goniotomy Surgery

The blood seems to be draining from her iris & out into the white part of her eye. This pic is right after a round of eye drops. The drops tend to make the area around her eyes more red. Today was the WORST day-- the 3rd day after surgery. The 3rd day after surgery last week was the hardest too. But this one was even worse! The 1st day after surgery isn't so bad because she still has some anesthesia in her system, so she sleeps a lot. Day two- she still has a bit of anesthesia in her, but the pain and fussiness starts to set in. There's a lot of crying, but it is nothing like the 3rd day. Serenity now!

Jaidin’s profile…….. What can I say…… Another thing that I can’t resist! I LOVE it!

I love when she stands on me and hangs her head over my shoulder. The way she looks when her little neck is not in 5 rolls is soooo cute!

2nd Day After 2nd Eye Surgery.....

What a trooper! 2 days after surgery…… So far, all is well. We went back to her ophthalmologist again this morning and he said that our little Jaiders looks good. Her right eye is really bloody in the iris area, but the dr. said that was completely normal. She is extra fussy after surgery. You can tell that she does not feel good at all. She doesn’t sleep much, and thus, mom doesn’t sleep much. Sometimes she just cries and cries and cries. I am slightly worried that my little, happy girl will disappear. She was just starting to smile and giggle a lot. She has also just started making a lot more baby noises lately. They are soooo adorable, but I am worried that she will regress in this area because she is so sad and in pain all of the time. I think her meds make her extra groggy and cranky too. The dr. told us to wash our hands after we give her one of her eye drops. He said if we didn’t and the drops got in our eyes, we’d be on our way to the emergency room with the worst migraine of our lives. I can’t believe I am giving something like that to my little baby. It is a necessary med though. It constricts her pupil so that her pupil does not grow into the area where they cut in her eye. If we didn’t give her these drops, her pupil would become deformed and misshaped. Also, her oral Rx med makes her really groggy and out of it. It has side effects of blurred vision, drowsiness, and nausea. Too bad the drowsiness doesn't knock her out! No wonder my little angel is in tears all of the time.

She has another eye surgery this Thursday. They will probably be doing a goniotomy on her right eye.

In happier times...... Sooooo full of smiles……

Jaidin’s FAVORITE spot in the whole world!

I love it when Jaidin does this. She kicks her legs down and locks them in place. Good luck trying to changer her diaper when she does this. I just think it looks hilarious! She is also making her “duck” face. Another thing that I love.

Right after surgery. They went in and drained some water and released some pressure out of her right eye. They did a goniotomy on her left eye. With grandma & grandpa Summers.

Why a blog? Why Now?

What's worse than talking on the phone? Retelling the same story to everyone you talk to! And since I have about 15 minutes to myself each day, I do not want to spend them on the phone. I need these precious minutes to shower, clean, eat, or take a nap. So, hopefully with this blog I can keep people updated on Jaiders, while leaving the phone out of the equation. (Can you tell I HATE talking on the phone)!
How will I have time to blog if I don't have time to spend on the phone you may ask?? Simple..... When you have a child who will only take naps while laying on you, you find yourself looking up all kinds of things on the internet that you never imagined. (Don't freak- her naps usually only last about 15 minutes). So, instead of learning about the mysteries behind the many colors of our poop, I have decided to blog. Who knows, blogging may be therapeutic for me. BTW- Talking on the phone is out during nap time, as my little girl is the lightest sleeper in the world.