8 Weeks, 2 Days and Growing Like Weeds

Well, it's been almost a week since the last post, so I figure the twins' adoring public deserves another update. Overall, it's a happy thing we haven't posted as the news is almost all positive. So the old "no news is good news" adage applies here. Mostly, I figure you want more pictures, and we have those right here!

Isaak finished up his course of Epogen this week, and boy what a difference it made. He had been doing quite well from a respiratory standpoint but began showing signs of breathing difficulties before they started the treatment. He was also pale as a ghost. They didn't want to transfuse because of the various risks associated with the procedure. Almost as importantly, severe anemia tends to jump start red blood cell production and a transfusion can stop that process cold. They began the Epogen course and hoped that it would kick in before a transfusion was absolutely required. It appears to have worked. They won't do another reticulocyte or hematocrit count for a couple of days, but visually, he is like a different baby. He spends most of his time at room air concentrations with about 2 lpm of flow. With luck, they will begin turning down his flow a little bit at a time.

The biggest concern with Isaak has really been his weight gain (or lack thereof). He has been getting a mix of oral and IV nutrition but had nearly stopped gaining weight. You could see that he was longer, but just wasn't getting much heavier. Each time he would gain a few ounces, he'd give back half of that in a couple days. This was likely caused by a combination of the "dumping" he was experiencing from his ostomy and possibly the anemia (the body has to work harder to cover for the low hematocrit). Even after the dumping improved dramatically he still wasn't gaining as quickly as needed to hit his targets in preparation for the surgery on July 13. Remember, they really want him at or as close to 2kg (4lb 6.5oz) as possible. The doctors and NPs spent quite a lot of time brainstorming over the weekend and made several adjustments including lowering his oral intake to allow for increased TPN.

It appears to have worked like a charm.

Little guy has gone from 1500g (3lb 5oz) two days ago to 1720g (3lb 13oz) tonight. His ostomy output is now very, very good. After the first night of gain, we all held our breath as we were afraid it was a fluke, but it's occurred two nights in a row. He's not puffy at all so no one thinks it's just water weight. The TPN is doing it's job right now, but of course, we hope that once his ostomy is repaired, they will be able to dramatically reduce the TPN quantity. There are many complications resulting from extended use of parenteral nutrition. The good news for him is that getting any oral food at all has been shown to have a really good protective effect on the liver and other organs.

Penny's biggest challenge has certainly not been gaining weight. The little piglet (or piglette, as her mama likes to call her) is now getting 38ml of breast milk per feed and weighed in at 1841g (4lbs 1oz) tonight! Her primary issue has been breathing. She'd been outpacing Isaak for so long, but took a slide early in the week. They ended up bumping her flow to 2 lpm (from 1 lpm a couple of weeks ago). The concern was that even at the increased flow rate, she was still needing between 28 and 30% oxygen. That is not a particularly high concentration, but we really want to be weaning them off all respiratory support. The solution was a dose of Lasix. She had begun to look puffy and edema can cause major issues with breathing since the lungs are one of the first places that fluid tends to go. After the dose, she lost almost 100g in water weight and then proceeded to get right back on track with what looks like real, solid gains.

Oh, I almost forgot, if you haven't cheated and looked at the pictures first, Penny is in a big girl crib! No more isolette for her. They began having a hard time keeping her cool enough so early Sunday morning she got a bed change. If Isaak gets a little bigger and demonstrates he can also regulate his body temp, he'll join her soon (literally, the little guys will be hanging out in the same spot for the first time since they were born).

3lbs of Cute

...well, really a little more than that.

Both of the little guys have decided to go on a growth spurt the last few days. Penny finally surpassed her brother (having the advantage of her full intestinal tract and all). She is sitting at 1450g, or 3lbs 3oz while Isaak is at 1420g, or 3lbs 2oz. Penny has well more than doubled her birth weight of 650g and Isaak is working on his (780g), but has a ways more to go.

It's not all fun though. Today is a good news/bad news sort of day. Weight gain is good. Respiratory problems are bad. Maybe not BP oil spill bad but not good.

Isaak made it 2 days with no respiratory support but has decided to backtrack substantially and is now back on the vapotherm. In fact, the little fella is receiving a higher oxygen concentration than he was before coming off. He's also experiencing significantly more and higher severity apnea and bradycardia episodes, especially today. Scary? Yes. "Normal"? Maybe.

Two things are going on here: The first is simply that his hematocrit is likely fantastically low. It was down to 20 a couple of days ago and might be lower now. He's making his own red blood cells but apparently not enough to fully re-supply himself. Secondly, he appears to have developed a case of very dry and very thick secretions. Why? Who knows. He spent some time on oxygen from the wall (which is bubbled through water but not heated like the vapotherm). This might have dried him out. The vapotherm seems to be loosening things up a bit and the nurses are getting a lot of boogies out. His right nostril was stopped up or swollen enough they they could not get a catheter in to lavage or suction. Hopefully the swelling will go down overnight as they leave that side alone.

What are they doing to help him? Well, besides vapotherm again, they were finally able to figure out how to get enough iron in his TPN to begin Epo shots tonight (he's probably getting the first one as I type this). A transfusion was considered multiple times, but there are risks associated with those AND they would have had to stop all oral intake. It's very important that his intestines stay engaged and working right now so they decided to hold off on the transfusion in the hopes of trying epo. We would have liked to have seen something done a bit more aggressively, but these guys are so delicate and there are so many potential reactions to treatments, it's always a balancing act. The epo did wonders for Penny. It's a 10day course but hopefully we will see improvement in his situation fairly rapidly.

Something to remember here: These guys are both doing fantastically well by preemie standards. Ebbs and flows of condition (esp. respiratory) are to be expected. It's a little disheartening of course, but you learn to expect it and try not to dwell on it.

Penny is doing better breathing every day. We hope tomorrow brings even more improvement. She certainly has spells of A's and B's, but is growing more stable. The little princess might be off all support before long!

That's it for now. Oh, there are new pictures up. Click on Ollie up to the right and you'll see a new album. It's amazing how cute the little guys are getting ;)

G'nite.