Penny and Isaak - Together Again

So today Isaak made a big stride and is now living with his big sister in their new house:

You can catch a few more extra cute pictures in our photo albums.

If they were still in utero, I would have been 34 weeks pregnant today.  Instead, I'm finding it hard to believe that they are going to be 2 months old tomorrow.  In any case, Neil and I are so excited to see them together in their crib.

Now that they are 2 months old and have gained a bit of weight, their immunizations will start.  To minimize the chance of reactions, they'll only get one shot per day.  Since there are five shots due at 2 months, it will take five days to get them all.  The five they will be getting are polio, hepatitis B, Hib (influenza type B), pneumococcal, and DTaP.  Speaking of vaccines, it is recommended that adults get a pertussis (whooping cough) booster - especially if they spend any time around infants and children. 

Penny has been doing very well "practice" breastfeeding.  Today she managed to "nurse" for about 30 minutes.  And she even ate about 2 mls of milk!  She's got the process down - latching on, suckling, swallowing and remembering to pause and breathe occasionally, too.  I'm so proud of her.  =)  She'll still get most of her nutrition via her ng tube.  In fact, she was bumped to 41 mls every 3 hours with 5 packs of HMF.  Her weight tonight was 1956 g (4 lbs., 4.9 oz).  Be sure to look for her chubby cheeks and double chin in the new photos.

Isaak's weight gain has continued as well.  In fact, last night he hit the magic number of 1800 g - the minimum amount in order to do his surgery.  Tonight he dropped to 1795 g (3 lbs., 15.3 oz).  I wouldn't be surprised if he surpasses the 2000 g (2 kg or 4 lbs, 6.5 oz) goal before his surgery in two weeks.  Isaak has also gotten to do a little bit of practice breastfeeding.  He's not as adept as his sister, but as we've seen over the past few weeks, he'll catch up with her in his own time.

Both babies are doing well respiratory wise.  Isaak's still at 2 lpm and room air (21% oxygen).  Penny's usually somewhere between room air and 25% oxygen and is now at 1.5 lpm.  They've both had many fewer A's and B's and almost always "self resolve" when they do.  But mostly they just desat every now and again.  For Penny, actually, it's about every 3 hours...when she poops.  One of her nurses nicknamed her Poopsy Penny.  Occasionally I'll call her Princess Penny Poopy Pants.

She's gonna love that story when she's 15.  =)

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).

Growing, growing, growing!

They keep on growing!  As of tonight, Penny weighs 1680 grams (that's 3 lbs, 11 oz) and Isaak is 1460 grams (3 lbs, 3 oz).  Little Miss Penny is now a half pound bigger than her brother!   

Penny's practice breastfeeding has been going very well.  She's been a very noisy eater since she is trying to latch on and suckle with a feeding tube in her mouth.  I've affectionately named her "Piglette" because of the slurping!  To help her become a more effective eater her nurse removed her orogastric tube and replaced it with a nasogastric tube this evening.  We'll find out tomorrow if she will keep Piglette as her new nickname.

Both babies are on 2 liters of flow on their vapotherm.  Isaak is usually at room air (21 percent oxygen).  Penny varies from 23 to 28 percent oxygen.  She was just bumped to 2 liters today in hopes that they could wean the amount of oxygen she needs and it seems to be working so far.

Isaak was on the Elecare for less than 24 hours as his output was much higher on the formula than on breast milk.  Since he's been switched back to breast milk, his output has been anywhere from 9 to 13ml every 4 hours.  That's still a little higher than they would like for it to be but it's much better than the 23ml of output he had with the formula.

That's all for now. Hopefully we'll get some new pictures up in the next few days.

TV Star Twins

Good Evening Friends and Family.

The last few days have been interesting for ourselves and for the twins. Both are continuing to grow, albeit with some challenges. If measurements are correct, Penelope is now up to 1580g (3lb 8oz) while Isaak is at 1460g (3lb 5oz). Little girl is eating like a champ and is doing well during "practice" feeding with Bekka. Once she no longer has an OG tube, I don't think there will be a problem with oral feeds. She had a bit of an apnea scare that required neo-puff assistance today, but it was short and she's been doing great since.

Isaak is gaining weight, but is also having additional difficulties the last few days. We do not know if it's due to his anemia or something else, but the volume of fluid out of his ostomy has increased and has also been less processed. All involved hope this is a very temporary development and that he is not going to have further complications in an already complex young life. He was switched to a formula called EleCare this afternoon instead of breast milk in hope that it is more easily digested. If this is due to anemia, let's hope the Epo kicks in sooner rather than later. He's also had to have his flow rate turned up on VapoTherm. In this case, our anemia nemesis is definitely to blame.

In other news (literally!), Bekka and I were interviewed by local station WRAL today. They were doing a story to highlight Father's Day and the hospital ICN staff recommended us for an interview. We discussed the loss of Oliver and the joy of having the twins. Renee Chou did a fantastic job and it really is a nice piece. Please enjoy below (and maximize the image for near-HD quality!). Let me tell you they are photogenic little guys and there are beautiful shots of Ollie.

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.

Update on the Babbies

Both of the little monkeys were doing pretty well tonight. Get this: Isaak is now off all breathing assistance. Will this last? There is a good chance it will. He tried to go off a couple of weeks ago but couldn't quite hack it, however, he has been doing fantastically well from a respiratory standpoint and they finally decided to try again.

He's up to 4ml per hour on his feeds and is processing everything well. They are trying to get the right balance of oral feeds and TPN via IV that will help him pack on the ounces but not provide too much fluid. If they give him too much total liquid, they are worried that it could lead to pulmonary edema and we don't want that! If weight gain really becomes a problem, they will have to back down from the oral feeds and increase the IVs. We'd prefer not to do that as having a good balance helps to minimize the risk of complications and liver damage.

Penny weighed in at 1220g tonight and Isaak at 1280g. He's been up and down a bit, so we are hoping he will stay on an upward trend as he really needs to be between 1.8 and 2.0 kilos prior to the ostomy repair surgery. He looks *great* right now, with pink little skin and is just generally really active.

Penny had another pack of HMF added to her feed (that makes 5). She is doing OK from a respiratory aspect but her little brother really ran right past her. It appears that the epo might be kicking in though, as she has been running at 25% O2 the last couple of days (vs. the 30+ she's been running the last two weeks). Little girl decided she didn't want mommy and daddy to leave this evening and had a moderately long but not very deep brady and desat spell. Since the events mentioned in the last update, she's been *much* better overall (no desats to the 20s or neopuffs readied.) If the epo is successful and she continues the steady weight gain, the spells should start disappearing soon.

We'll try to get some pictures up before the end of the weekend.

People Can Be Awesome...

You know what's cool? Getting a freezer full of food:

 

You know what's even COOLER! (all puns intended):

(Be sure to click "Read More")

Isaak is back at WakeMed

So after much discussion with many doctors, and after hours of agonizing between ourselves, Bekka and I made the decision to move little guy back to WakeMed. That transfer occurred today and he is now ensconsced in an isolette right next to his sister. We are, of course, ecstatic to have them together again and close to home. It was tough being daddy and not being able to easily see my little guy whenever I wanted, and mommy had a really difficult time being in Chapel Hill and not seeing Penelope every day. Their nurses at WakeMed were almost as excited as we were to see him again and that was very touching. It's still scary when you do this type of transfer on a baby that is so small and delicate, but we felt it was the right thing to do for us and for Isaak. Now we wait and watch them grow (together!) and hopefully stay healthy.

We must give many thanks to the doctors and nurses at UNC. Their efforts saved his little life and they have been caring for him well these last 2 1/2 weeks. Isaak isn't done with UNC, of course. He is tentatively scheduled to have surgery on Tuesday, July 13 to repair his ostomy. He'll probably be transferred back to UNC a couple of days before that and he will be there 1 to 2 weeks for recovery and GI services as they calibrate his TPN levels and feeds before coming home.

Of course, to complicate this, if Penny stays on schedule, she will probably be coming home right about the same time. Luckily we've no shortage of volunteer grandmas, aunts and friends willing to step in and babysit. Funny that.

They both had pretty good days. Isaak's was perhaps a bit better. As mentioned in the last post, Penny is experiencing anemia right now and she's been having a few more cases of "A's and B's" as the nurses call them (Apnea and bradycardia episodes). She had a couple of deep de-sats while we were there this evening. No neo-puff was needed but it was pulled out. That isn't like her at all so they'll be keeping an extra close eye out. She really hasn't been herself today - much more lethargic than normal. One thing we keep telling ourselves is this is a process with steps both forward and back. They are only 31 weeks gestational age as of today and that is pretty tiny. Little girl has also been off caffeine for about 2 weeks, which is significantly earlier than normal so she's been way ahead of the curve. We'll see how this goes.

In other news, Grandma (Bekka's mom) arrived from Oklahoma today. She couldn't wait any longer to see the babies again. She'll be with us through Saturday. (Well, I say us, but really with the little ones :)

That's all the news that is fit to print for now....

Penny and Isaak - June 6/7 Update

First off for the fun stuff...NEW PHOTOS!

Now to the updates:

Isaak is still at UNC and Penny is still at WakeMed. We will be continuing our discussions with the doctors and nurses at both hospitals to determine how to proceed from here. I think Bekka and I have decided after having the little monkeys in 2 locations for over 2 weeks, that it's time to get them to the same hospital lest we go insane. Now we just have to get all of the information we can and weigh the pros and cons to see where they wind up. This is not easy as there are medical, mental and practical issues all in the mix.

In terms of health, Penny is weighing in at 1080g and has been ramped up to 23ml every 3 hours on her feeds. She is continuing to do well on the Vapotherm at a flow rate of 1.5 lpm with an O2 concentration around 30-32%. They'd like to get her concentration down to room air (21%) but she's not quite able to do that yet. It may very well be due to her low hematocrit level. They considered a transfusion, but she is beginning to make her own red blood cells and so they have decided to try a round of Erythropoietin or "Epo". This drug helps promote the survival of red blood cells and so they hope it allows her bone marrow to catch up with her needs. (It was also famously used in cycling doping cases). The treatment course is 10 days long during which they will also be giving increased iron supplements. If all goes well, this will help her over the hump, after which she will be making enough of her own red blood cells. She has also been a little edemic over the last couple of days, so they have given her a dose of Lasix to help her get rid of fluid. This is not uncommon when the babies are getting O2 and are experiencing low red blood cell counts. Both of them have received doses of Lasix at varying times, especially post transfusion. There are many causes for edema in micro-preemies and no one is worried just yet.

Isaak is hanging in there. He is still being fed orally, if slowly. It appears they may have ramped up his feeds a little too fast at the end of the week, and he began "dumping" lightly processed milk out of his ostomy. They backed the rate down and he appears to be adapting well and is beginning to process the breast milk better. They have resumed increasing the volume, but will proceed more slowly. He weighed in this evening at 1152 grams. That's a good number, but we have to remember that they would really like for him to get as close as possible to 2kg before doing the ostomy repair surgery. It's not a hard and fast rule, but it can really help recovery. You will note that little sister is rapidly making up that 130g difference at birth! From a respiratory standpoint, he's doing very well and is now strictly on heated and humidified air (Vapotherm that they aren't calling Vapotherm) from a nasal cannula getting 2 lpm of flow at room air concentrations. No more head-squishing CPAP for the time being!

So all in all we are doing OK. The babies continue to sleep and grow and we continue to love them a little bit more every day.