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.

So Long TPN – Don’t let the door hit you on the way out!

First the good: Today is Isaak’s last day on TPN! His Broviac catheter will be left in place for another month in case we have to backtrack and put him back on some sort of IV, but we are thinking positively on this one.  He’s done very well on the low volume over the last week. Until removal, we will only have to flush the line daily and change the clave/connector twice a week

In news almost as exciting, he will now have a 4 hour gap in continuous feeds. He’s getting the same volume through his g-tube but over 20 hours instead of 24. This means we have 4 hours of a cordless baby! This is going to be a good thing for Isaak and mommy and daddy.

Both of the little guys continue to grow at an astounding rate. On Monday, Isaak weighed in at 14lbs even and Penny at 15 lbs 4oz. Amazing. Isaak has really taken off since they began allowing us to feed him on demand and Penny just keeps on trucking. She is such a chubby monkey now with little leg rolls and arm rolls and the biggest cheeks you have ever seen. We’ll have to get some diaper only pictures soon for the world to see ;)

Now the not so good: Isaak had a physical therapy evaluation on Monday. They were very happy with the neuromuscular side of things and he seems to be developing fine motor control reasonably well (such as passing an object from hand to hand) – BUT – his gross motor skills are lagging. That would include head control and attempting to sit up or roll over. We have certainly noticed a gap compared to his sister and mentioned as much during the SICC visit. As such, we’ll be looking at getting weekly PT visits to help him along as well as focusing our attention on helping him work towards goals.

We think that some of this may be because he just hasn’t had the same opportunities as his sister. He’s been hooked up to IVs and feeding tubes so much that our interaction has been more limited and we’ve been unable to hold him or place him in certain positions. Now that he is cordless for a few hours it will be much easier to work with him. We have no idea at this point if this anything other than developmental lag. We really hope so.

Now the downright bad: Isaak had an eye exam last Thursday and the results were not encouraging for his left eye.  When last we visited Duke Eye Center, we thought everything was going to be pretty stable but the doctors let us know that nothing was predictable in these situations. It now appears that additional fibrous tissue is growing around the retina and is causing more tugging, greatly increasing the risk of full detachment.

We may have reached a point where surgical intervention will be required to try to preserve the vision he has in that eye. On Friday (12/17), he will be undergoing a detailed exam under anesthesia, and depending on the results, they will progress immediately to surgery. If surgery is necessary, odds are good that he will lose the lens in his left eye and will have to wear a contact lens to protect it and allow proper focusing. 

The left has been of great concern since a massive hemorrhage back in the summer. It appeared that it had cleared up and stabilized but apparently damage was caused that might have been behind the retina and this has led to the continued problems. No question this is a big disappointment. Little guy has seen enough of OR for a lifetime, much less for a baby not even 8 months old yet.

On the plus side, his right eye is doing really well and is essentially mature. 

That's it for now (quite a lot, really) and we'll have more information on Friday regarding surgery (or hopefully lack thereof).

Of Synagis, SICC and Many Cute Photos

I'm not sure this upside down stuff is such a good idea, bro...

Last week was a big week for the munchkins.

• They turned 7 months old (real age)
• They turned 16 weeks old (adjusted age))
• They got their second Synagis shot for RSV prevention 
• They also got a flu booster (takes two shots at such young ages)
• They went to the (unfortunately named) SICC (Special Infant Care Clinic) at WakeMed
• Isaak had a very good visit with the gastroenterologist
• They both got cuter somehow

That's a lot of stuff for such little guys.

Let's start with the SICC. This was their second visit to this clinic at WakeMed. It's a one stop shop for preemie care where we get to meet with a neonatologist, developmental specialist and physical therapist to evaluate the development trend of both of the little guys. This is above and beyond the regular pediatrician visits and is focused more on specific preemie problems. Early intervention is the name of the game for preemies.

Penny's evaluation was almost boring. She needs a bit more tummy time and additional stretching.

Isaak's was more complicated but overall still positive. He has a tendency to look and pull to his left. We think it's because of the vision issues related to the partially detached retina (and therefore only having peripheral vision in his left eye). Regardless, we are going to have him evaluated for physical therapy so we can avoid major issues down the road. It's very important to nip these issues early so skeletal and muscular development are minimally impacted.

They both are growing spectacularly. Depending on which scale Penny was on last week, she weighed between 14lb 6oz and 14lb 10oz. She was also 24.5" long. All told, she was around the 90th percentile based on an adjusted age of 16 weeks. Needless to say, that is reallllly good for preemies. Isaak weighed in around 13lb 5oz and was 24" long. That put him between the 55th and 60th percentile on all the pertinent measurements. We have no complaints that our little guy who had over half his small intestine removed is growing that well. Amazing.

So that leads to the surprisingly good GI appointment. Bekka and I were prepared to go in fighting to try to get Isaak more oral feeds and off of TPN as quickly as possible. It had become quite apparent over the last two months that 2oz at a time was just not getting it done from an Isaak satisfaction or parental sanity standpoint. An hour and a half after eating, little guy was starving and screaming (I'll have to see if we can't film the Legendary Isaak Squeal(tm) one day and post that bad boy).

In the first 30 seconds of the visit, the doctor disarmed us completely: He walked in and basically said: "Wow. His weight is great, his bloodwork is continuing to improve so why don't we try this: We'll start ad lib feeds immediately and see how he does with those. In a week, if everything is going well, we'll cut his TPN in half and a week after that if it's still going well, we'll stop it. We'll leave the broviac in for another month just in case".

Our jaws hit the floor. He pretty much handed us everything we were looking for in those few moments AND he thought Isaak was doing very well. Yay!

Friday, Bekka took them to get their Synagis shot and flu booster. You can follow the link above, but Synagis is essentially a shot full of antibodies against RSV. RSV is one of the most dangerous bugs small children with compromised lungs or immune systems can get. That is also why we will be increasingly antisocial as the winter drags on and won't even be able to take the kids to the big family Christmas gatherings.

Yes, it's that serious.

Getting sick can easily lead to pneumonia for preemies as their lungs aren't usually caught up to full term kids until almost two years of age. Check this PDF out. What that means is no big gatherings for the kids and minimal contact with children ourselves and with parents of preschool age kids. Among others, this is a prime reason Bekka will be staying at home caring for the kids at least a couple of years. They stay fragile for some time and the risk in daycare is far greater for them than full term babies.

So that pretty much caps off November and early December. Our next big date is December 9 when Isaak goes back for an eye checkup at Duke Eye Center. They will be putting him under for this so they can get a really detailed look and in case they need to perform any additional procedures. Wish him well!

In the meantime, you can entertain yourselves with the newly uploaded videos for this month and a slew of photos.

UPDATE: All photos now with 45.3% more snark in the captions :) Just didn't have the time earlier.

Laughter really is the best medicine

Especially baby laughter!

From The Penny and Isaak Video Show

Lots more photos plus doctor updates coming soon! (Tomorrow?) In the meantime, enjoy this bit of baby cuteness. Sound is a must!