Bittersweet Milestones

Today is the 6th anniversary of Oliver’s death.

He would have turned 7 on Wednesday and should be starting 2nd grade right now. This also happens to be the first full week of kindergarten for his brother and sister. The progress Penelope and Isaak have made since their far too early birth still amazes us almost daily. We’ve taken great heart in each milestone they have reached: crawling, walking, talking, running, preschool and now, kindergarten.

However…

This anniversary seems to be more difficult for us than any since the first.  Penny and Isaak just made a big jump into the real world and achieved another milestone that Ollie never can.

That’s hard.

Day to day, we don’t (can't) focus on it much as we stay so busy with Penny and Isaak, and they deserve our full attention...but it’s never far from the back of our minds. We try so hard to celebrate their lives and their milestones while also quietly grieving the loss of a little boy and his future that will never be.

The twins understand the basic concept of having had a brother, but they can’t quite wrap their heads around the fact that he will always be a baby. A few months ago, Penny asked “Mommy - Is Ollie real?”

What do you say to that?

To Penny and Isaak, he is a name and a bunch of pictures. Both kids know that it makes people cry sometimes to talk about him but aren't sure what it all really means.

Life is a journey and ours has had its challenges…maybe more than our fair share if I’m honest. We've been blessed to share the journey with wonderful friends and wonderful family members. We have met great new people and build closer bonds with many we already knew, but given a chance, we’d trade that and take a healthy, SMA-free Ollie back in a heartbeat.

Our long, strange, trip will continue with two smiling kids by our side and flashes of butterflies and dragonflies in unexpected places to remind us of a little boy with big blue eyes and a mischievous grin that left a great big hole in our heart.

We miss you Jakob Oliver Mastin.

August 5, 2008 – August 3, 2009

Happy 4th Birthday to our Favorite Set of Twins

It's hard to believe, but yep, it's been 4 years since we ended an unbelievably stressful period of hospital stays for Bekka only to begin an even more unbelievably stressful chapter of hospital stays and surgeries for two tiny kiddos. Thanks to incredibly talented doctors and nurses, they both made it home.

When I say tiny, I mean tiny. 1lb 7oz for Penelope and 1lb 11oz for Isaak (or 650g and 780g for our hospital and foreign friends ;) That's what being born at 25 weeks and 3 days gets you. If you want to relive that, just follow this link: A one line blog post! and then click on newer below each post.

When Penny came home (nearly a month before due date), she only weighed a little over 5 lbs and when Isaak came home a month later (just after his due date), he weighed just over 6 lbs. Now they are both around 75th percentile. Amazing.

Thanks for all the support, love, wishes and prayers over the years. The kids are ecstatic as Grandma and Grandpa are here visiting from Oklahoma and Nana and Pawpaw will here this weekend. I predict a lot of spoilage.

I won't be so dramatic as to post "birthday" pictures today, but enjoy a couple from shortly after they came home (when they would have been full term):

And a goofy picture from this morning when Grandma gave them Doughnuts for breakfast (What else are Grandma's for? Amirite?)

 And a couple of silly pictures:

Arrrrrrr, matey...or what the &?#! is on my eye...

Isaak's surgery, besides being SIGNIFICANTLY more involved than we had hoped, went pretty well. This is little guy on Friday when he came home. He was grumpy and mostly very sleepy as the anesthesia worked it's way out of his system, but overall well behaved.

He went to the clinic for a followup yesterday morning to have the patch removed and make sure everything was stable. Below is a shot from the afternoon. Honestly, his eye looked much better than we expected. Up close, it looks pretty rough with substantial blood and you can see the gas bubble they injected (it looks like a bubble level for a tripod). You really can't tell that his lens is gone.

So for the next few days, we have to follow a strict regimen of 3 different eye drops (dilator, steroid and pressure) and antibiotic ointment. Some of them are applied up to 4 times a day. Fun? Not really. Though he does seem to be getting a bit better at tolerating the application.

Overnight, he gets to wear an eye patch to keep him from scratching at his eye. He's not a bad little patient at all. (Cute too).

Thursday is the follow up appointment at Duke and we'll see where we go from there.

Eye Surgery, Part 2

UPDATE: Neil here - Isaak came through surgery fine and Bekka is with him in recovery. (I'm at home with Penny,  long story).

So Isaak had about as much done as one could. It was a mess in his left eye. Blood vessels were dragging nerves around and growing in strange ways and there was quite a lot of scar tissue. Something had to be done or complete detachment was highly likely.

So what did they do?

• Removed the lens (he will wear a contact lens from here forward)
• Cut most of the scar and fibrous tissue pulling on his retina. They were not able to get to all of it, but were able to to get to most.
• Placed a scleral buckle around the eye. This helps to relieve tension on the retina. It might be permanent but will be in place for years in any case. It will have to be periodically loosened to allow for growth.
• Performed more laser surgery in his right eye. A couple of areas had started showing abnormal blood vessel growth. Unfortunately, RoP is a lifelong disease and we will have to stay on top of this. Overall his right eye is still doing really well.

Prognosis for the left eye? We have no idea right now. If these procedures have stopped the pulling on the retina, it will hopefully heal, stay attached and he will maintain peripheral vision.

Little guy has certainly had a challenging time of it in his short life. RoP rarely gets to this advanced stage these days, but in his case, too much hidden damage appears to have led to this situation. This was particularly frustrating as his eye appeared to have stabilized several time before suddenly worsening.

He's a trooper though and just keeps smiling through it all.

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Isaak was taken back to the OR at 7:30 this morning. (We've been here since 6am, which meant I had to get the poor little guy out of bed at 5am.) He spent his time talking, smiling and flirting while we waited.

The retinal specialist came out to talk with me a few minutes ago. She will also be doing some additional laser ablation on Isaak's right eye as there is still some abnormal blood vessel growth. Her main concern with his left eye is that the tugging on the retina caused by the fibrous tissue could cause a hole to tear in the retina. If that happened, the vitreous fluid could get behind the retina and cause a full detachment. Full detachment would mean no functional vision in that eye.

I'll post more updates as I have time and more info.

Isaak and the Big Field of Vision

A quick couple of links that I've found helpful in understanding Isaak's vision loss.

The first is from Wikipedia and shows photos of visual field loss.

Second is a vision field test from St Paul’s Eye Unit, Royal Liverpool University Hospital.

Lastly, a graphic from Brown University.

Depiction of Visual Field from Brown University

Isaak's Eyeballs Open Post

Good morning!

We'll keep this open with occasional updates today. Right now (8:35), we are finished with preop and waiting for them to take Isaak back. He's currently asleep in Bekka's arms so I'd classify that as doing OK ;)

To recap: They will be conducting a detailed exam of both eyes while he is under anesthesia. More than likely, they will perform laser ablation surgery on his right eye to help with the RoP issues and to direct retina development into a more normal pattern. Based on the exam, they may also laser areas in the left eye in the hopes of stabilizing the situation and salvaging as much vision as possible. We'll have a much better idea where we stand.

Update (10:00am): We just met with the retinal specialist. The news confirms the pre-op diagnoses. The right eye looks healthy, if a bit underdeveloped for his age. The surgeon is in the process of lasering that eye to dry up a couple of small bleeds to prevent them from expanding and keep his right eye on track.

The left was, if anything, a bit worse than anticipated. They were able to conduct a much more detailed scan of the eye which showed how large the fold was and indicated that there is definite retinal detachment at the center and in a line across the eye back towards the nose. (Ok, had that backwards, it's actually towards the outside of the eye. He is going to have decent outer vision because the inside of the eye is what looks out.)

This is apparently classic stage 4-B RoP. Most of the periphery of the retina is attached, and he should have good outside peripheral vision. The doctor indicated that were this an older person who had developed the same problem, they would almost certainly have performed surgery. In the case of Isaak, this has been going on long enough that he has not developed the neural pathways to learn to see, and the risk associated with cutting the eye open and possibly having to take out the lens is not worth it. We do not know for sure if they are going to laser anything on that side.

Interestingly, he will have to have glasses as he gets mobile mostly to protect his very valuable right eye.We'll have more after meeting with the surgeon.

Update (11:00am): Just met with the surgeon. Everything went swimmingly. His right eye looked good and she hit a few spots of concern (but nothing dire) with the laser. She was very happy with the vascular development in the left eye outside of the folded area and only hit a couple of spots there. She confirmed that both she and the retinal specialist concurred that surgery on the left eye carried far more risk than benefit, especially considering how well attached and developed the unaffected retina is. We will see her again a week from Monday for a follow-up. In the meantime, we apply two different types of eye drops for the next 5 days. That is pretty much it for post-op care.


Bekka is back in recovery with Isaak and I'm waiting for them to move to a normal post-op spot so I can join. After that, we'll wait while they find us a spot in the main hospital tower and go from there. His stay in the hospital is strictly to observe for any lingering effects of anesthesia, from an eye standpoint, he is good to go.


Update (Afternoon): Little guy is happily ensconced in a room on the 5th floor at Duke. Once he was awake, you've never seen a baby so eager to get a bottle of milk! Poor guy had not had formula or g-tube feeds since  midnight, only some pedialyte overnight (just like grownups and anesthesia, he couldn't eat). This afternoon, he's mostly been napping. I'm sure the stress of the surgery plus the lingering effects of being put under have zapped him but good.

Assuming no issues, we'll be outta here first thing in the morning.

Isaak's Eyes are not Smiling Today

Yesterday, we received tough news regarding Isaak. His left eye has sustained damage that likely means he will have little or no central vision in that eye. With a little luck, he will have peripheral vision but that depends on how development occurs and whether the damage progresses.

Last week, his weekly eye exam revealed a fold in the retina of the left eye. This was new, and the doctor in Raleigh immediately scheduled a visit to the Duke Eye Center. We had that visit yesterday and the doctor indicated that the fold went from the outer edge of the retina into the macula. The fold is essentially a ridge of blood vessels and scar tissue that have pulled the retina up.

The macula is critical to central vision (you may be familiar with the condition of macular degeneration). It appears there really is nothing they can do to guarantee improved vision in the eye without putting the overall health of the eye at even greater risk. You also have to take into account the risk of 2+ hours under anesthesia for any potential procedure given his relatively delicate state and young age. If his right eye was also in equally bad shape, they might recommend taking the risks involved to try and salvage more vision.

His left eye has been more problematic from the beginning, and he experienced a large hemorrhage a couple of months ago. It's not unlikely that whatever caused the hemorrhage event led to this situation.

The right eye is doing reasonably well. However, he still shows signs of Stage 3 RoP, and that is concerning at this late age. To that end, they have scheduled a detailed eye exam under anesthesia with likely laser ablation surgery. It's also quite possible they will perform laser surgery on the left eye to help reduce the likelihood of total vision loss. This is scheduled for Wednesday (10/13). Time under anesthesia is pretty short for these procedures (vs. full-on surgery).

Yep, that's tomorrow. Life moves fast when you have preemies.

We cannot lie: This sucks.

Isaak has some of the biggest, most soulful eyes we've seen this side of Ollie and he's been through so much already. It is terrible that this is happening to him on top of everything else. Unfortunately, he seems to be following the path that many boy preemies take: That of most difficulty.