Goodbye Broviac and Hello 200th Post

UPDATE: Broviac removal is complete. They didn't even have to cut the little guy. The surgeon was able to work the catheter out gradually. He'll be bandaged for a couple of days then home free. Conveniently, they also changed his g-tube for us while they were in there. That isn't a particularly painful thing to do, but can be uncomfortable.

Tomorrow is a big day for little Isaak. A very big day. As his blood work has continued improving, the docs were comfortable with scheduling Broviac removal. We don't have a time slot yet (please don't let it be 6am, please don't let it be 6am!), but at some point tomorrow, Isaak will be Broviac free for the first time since July 13, 2010. The little fella has progressed beyond the most optimistic expectations of his various doctors and this is the latest sign.

The procedure is pretty minor, but he will have to be sedated/put under for a brief period. Apparently, we were extra-careful taking care of the Broviac and the internal cuff that holds it in place is really embedded in tissue. It's supposed to be that way, but the surgeon told us that in a lot of cases the catheter will just slide out of the patient when it's time to remove it. I guess this means we are good parents/nurses...

To top off the joy associated with this event, we have started dramatically reducing his g-tube feeds. A few weeks ago they let us drop it to 20 hours, then to 16. And 2 weeks ago we received clearance to start dropping by 4 hours a week. Right now, he's only hooked up for 8 hours overnight. That will drop to 4 hours on Friday and (pending positive blood work) nothing next Friday!

If this happens I'm not sure exactly what Bekka and I will do. It will be the first time we've had a little boy not hooked up to tubes since Ollie was 7 months old. I expect there will be dancing and tears of joy. You can't even imagine...

Isaak only has a few blood test results that are out of range, including phosphorus and a couple of liver enzymes. He'll probably have to continue getting monthly or bi-monthly blood draws for a bit to make sure he is getting fully hydrated and not having kidney or liver issues (thank you TPN and preemie-ness). That was one nice thing about the Broviac - they could draw labs without having to stick him. We'll still trade (not sure what Isaak's opinion is on this yet). Much like with the Broviac, the g-tube will stay in place for a while to make sure he is doing well enough to go without.

In other areas, Isaak is doing fairly well. He is still lagging in gross-motor skill development and muscle strength but has made really good strides the last few weeks thanks to weekly physical and bi-weekly vision therapy. We work with him everyday to improve strength. We have been able to play with him more and more as he's spent less and less time hooked up to feeds. He appears to be responding well. Why is he lagging his sister? Other than being a male preemie (a huge strike), he was also unable to be handled and/or moved as much as Penny. Thanks to the tubes, we actually had to restrict his movement.  Even though preemie developmental milestones are based on adjusted age, they frequently lag in development. By 2, they are usually caught up. While mommy is very confident, daddy waffles between extreme concern about Isaak's physical skills to very impressed with how he's doing on a given day. I'm afraid that Ollie left daddy overly sensitive to these things. Here's to more progress and less worry!

He has a follow-up at Duke Eye Center on Thursday (busy week). The vision therapist from the Governor Morehead Preschool has been quite happy with how he's responding. We'll see how the eye is physically doing this week and go from there. Externally, it looks to be healing well and he is even still tracking objects with both eyes. His left eye looks a bit odd with it's missing lens and huge pupil, but if the eye is functional at all, we are ecstatic parents.

Looking back over entries in the last months, it's clear that Penelope has received short shrift due to her "boring" lack of medical problems. Well, Penny is anything but boring. She is a mess. Her head is something like a radar dish as she constantly whips it around to absorb EVERY little detail of the world around her - especially when she's sleepy (which is also when she'll slap her leg to keep from falling asleep). She loves to play rocking horse with whomever is holding her (whether they are ready or not) and has been testing her lungs at maximum volume regularly for weeks. She also likes to raise both legs and slam them into the mattress or floormat.

Repeatedly.

For an hour.

The only weird thing is a persistent refusal to roll over. She appears to have the necessary strength and coordination and can roll to either side with ease, but just won't quite go on over. My theory is that one day she is just going to stand up, turn around and lie down on her belly rather than bother with rolling.

Oh yes, recent measurements on the two: Both were 25.5" long (a couple of weeks ago). Penny is now over 17 pounds and Isaak is over 16.5 pounds. These babies have come a long way from 1lb 7oz and 1lb 11oz.

Know that we haven't forgotten about photos or videos. The last few weeks have been inordinately busy with work, doctor appointments and family emergencies. Soon though, we promise!

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This is the 200th entry on Ollie's Tale. A little over 2 years ago, Bekka posted this. Our first, painful entry in the too-short story that was to be Ollie's life. We look forward to many more posts that are less and less about medical news and more about the little (and big) joys in our life. Bekka and I have talked about creating a new blog more focused on the twins and preserving Ollie's Tale as an archive of his struggle and the struggles of his little brother and sister as they first entered the world. We haven't made a final decision yet, but will soon. Penny and Isaak deserve their own space, I think.

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).

Surgery Day is Here

Today is Isaak's big day. The little fella is scheduled for 3 surgical procedures.

1. Reanastomosis of his upper and lower intestines and repair of his ostomy
2. A Broviac Catheter (smaller version of a Hickman Line).
3. Placement of a g-tube, likely with a Mic-Key button

Yes, it's a lot for such a tiny guy to go through but there is a reason for it all.

The reanastomosis is obviously the big one. An upper and lower GI contrast dye study was conducted today and the results were encouraging. Isaak had no visible strictures. Now the big question is will everything be healthy when they open him up. They may have to do small resections at the ends of the remaining intestinal tissue to make sure they are connecting the healthiest, most viable tissue back together.

The Broviac Catheter will allow the continuation of parenteral nutrition and is typically easier to maintain, longer lasting and with fewer infections than the PICC lines they have been using so far. It is almost certain he will need to continue parenteral nutrition for weeks to months to help him continue to grow while his gut adapts and develops.

The g-tube. That's a tough one. We really struggled with that decision as waves of memories of Ollie came crashing down with each discussion. In the end, conversations with doctors at both UNC and WakeMed helped convince us it was the best course for Isaak. With a g-tube in place, they can feed him continuously and help encourage bowel development, but without the potential negative assocations that might occur with the use of an OG or NG tube for an extended period. He'll still be able to eat orally, but they can increase the quantity and spread out the feeds using the g-tube. All in all, he should get home earlier this way and have a better outcome to boot.

If we are very lucky, the g-tube combined with oral feeds might mean he can go home sans TPN, but it's not likely. He will most likely be getting a mix of enteral and parenteral nutrition for some time to come. Gradually, his gut should adapt and he'll go off the TPN. This would be good for his liver as extended use of parenteral nutrition places a strain on multiple organs.

Surgery is scheduled between 10 and 1. Really, it's like the cable guy or something. The surgeon has several smaller cases he wants to finish up in the morning before taking on Isaak's. He'll be in good hands.

We will have a single running post tomorrow to keep the world up to speed as we know something. He was sleeping very peacefully this evening so hopefully he gets a good night's rest. Something I'm about to try to do.

Penny is doing well. We are trying to get her to UNC so Bekka can nurse. The more she can do that, the faster Penny will get home. She really is so close. She needs to desat a little less and move to completely oral feeds.

Both of the little guys seem so big now. Isaak cracked 2500g tonight (5.5 lbs) and Penny is just under 2400g (5lbs 5oz). He's 17.5 inches long and she is just over 16.5. It's amazing to look at these chunky little monkeys and think about where we were 73 days ago. We were so worried about getting him to even 1800g a few weeks ago. Those guys at WakeMed did a great job of fattening him up!