Ding-Dong, the G-Tube's Gone!

Yes. Yes. You aren't seeing things - this *is* the third post in March.

Oh, you meant the headline? (Of course you did!)

This was a potentially life-altering week for Isaak. On Monday, Bekka took him to UNC for what we thought was going to be a pre-op appointment with the surgeon to schedule removal of the g-tube and closure of the stoma. Previously, there was evidence that the gastric mucosa (stomach lining, basically) was growing up and out of the stoma site. On this visit, they decided it wasn't and went ahead and pulled the tube!

This was/is very exciting.

It's also very messy.

You see, the closure process basically involves letting the stoma close on its own, much like an earring hole. During this process, Isaak still has to eat and drink...and this has a disturbingly frequent tendency to result in a mess. Daddy came up with a method to help control the mess - maxi pads taped to his stomach - but it's by no means 100% effective. We still get milk geysers when changing the dressing once in awhile...

The stoma site is slowly closing and already looks much better. It is supposed to close in 2-3 weeks (!?!). Sometimes we think doctors don't quite know what we have to deal with at home...

In other news, we had a visit at Duke Eye Center last week. This visit was not nearly as exciting as the UNC visit because the news was not all good. Isaak's right eye still looks great, but the left has developed new issues. There is a bit of new bleeding and also some sort of lipid deposits around the macula. To add to the concern, the pressure is elevated in the eye whereas it had previously been fine. Sooooo....we have another appointment at Duke on April 11 to reevaluate the pressure levels and sometime soon after Isaak will have yet another exam under anesthesia. It's possible (possibly even likely) that Isaak will require further surgical intervention in the eye. We certainly hope not, but we'll go with it day by day.

In the meantime, this is the first time we've had a cordless little boy since Ollie was 7 months old. This is significant for us on so many levels. It really hasn't fully sunk in yet and probably won't until we no longer have to have bandages/maxi-pads on his tummy.

There is so much more to discuss regarding their development and new-found ability to say dadadadadadadadadee, but that will have to wait for another post - perhaps the post that will have the epic video of attempted green bean feeding. (Hint: it did not go well)

I can leave you with a few numbers this evening: Both kids are basically 28 inches long. Penny weighs a tick over 21lbs and Isaak a little over 20. Such a long, long way from 1lb 7 and 1lb 11 and under a foot long.

What is amazing is how deep they both are into the "normal" baby growth curve. Penny is sitting right at the 50th percentile while Isaak is around the 25th. If you adjust for their prematurity, Penny is over 90% and Isaak over 50. Amazing little guys.

Picture Time! - Late Winter 2011 Collection

Here it is. What everyone has been waiting for. Hundreds of pictures of your favorite cuties!

Just click on Ollie or the pic below and be whisked away to the gallery.

Update: New video here. (Man have I got to get some video editing software. Lots of good stuff of the kiddles to chunk together, but everything free is terrible).

In other news, since I'm sure everyone will be wondering just how big they are:

Isaak: 18lbs 12oz and 27"
Penny: 19lbs 12oz and 27.25".

Amazing.

Pretty soon they will be outgrowing their infant car seats!

Have a great Sunday!

Let's roll, Mama!

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!

----------------------------

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).

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.

6 Month Check-Ups

This will be brief, but it is an update!  =)

Both babies went to the pediatrician for their 6 month check-up last week.  Of course that also meant - gasp! - shots.  And while they got the "regular" 6 month immunizations (2 injections), they also got flu and RSV shots (2 more injections).  Isaak didn't start crying until halfway through the second injection.  Penny started about the time the cap came off of the first needle!  Neither one of them cried for very long, but it was heartbreaking nonetheless.

So, I'm guessing you all want statistics.  Well, tooooooo bad!

Just kidding!

Penny weighed a whopping 12 pounds, 10 ounces.  Her head circumference was 41 cm and her length was 23.25 inches.  At birth, she weighed a mere 1 pound, 7 ounces and was just 12 inches long.  *Updated info* As of Tuesday, Nov. 9th, she weighed 13 pounds even according to the home baby scale we have.

Isaak weighed 11 pounds, 3 ounces.  His head circumference was 40.5 cm and his length was the same as his big sister's.  He was just 1 pound, 11 ounces and 12 1/4 inches long at birth.  *Updated info* As of Tuesday, Nov. 9th, he weighed 11 pounds, 8 ounces according to the home scale.

Penny had an eye appointment last Thursday and her RoP has resolved!  The blood vessels in her eyes have finished growing all the way out to the retina!  She won't have another eye appointment for 6 months.  Yippee!

Isaak's next eye appointment at Duke is on Monday (11/15).  Hopefully, his RoP is almost resolved and there's not any more detachment of his retina.  (Fingers, toes, and, yes, eyes crossed!)

That's all the time I have for now!

P.S.  Thank you to those of you that have voted for the AHC Foundation in the Pepsi Refresh Project!  Your votes are making a difference as they have moved into 4th place...BUT they need to be in 1st or 2nd in order to win the grant money.  Please keep voting daily!  In addition to voting online, don't forget you can vote by text message as well.  That's 2 votes daily!

Isaak's Eye Follow-up and other Weighty Matters

Bekka will have more to follow with details on Isaak's vision and the like, but I thought I'd drop a quick note.

His exam with Dr. Freedman at Duke went really well. The right eye responded to the laser treatment and the vascular growth appears to be normalizing. The left eye did not show any additional retinal detachment and the couple of spots that were hit with the laser also looked like they were doing well. She is optimistic that the left eye will stabilize and there will be minimal or no further detachment. This is not guaranteed of course. Anytime you get retinal detachment, the situation can worsen.

One bit of potentially positive news regards his field of vision. Because his brain is still learning how to see, it should adapt well to the available vision so that it uses the right eye for the central image and merges the left eye's partial vision in a fairly natural way. An adult would probably perceive an actual blank spot in their vision.

We also weighed both kids today. Isaak clocked in at 10lbs and just shy of 6 ounces. That's pretty dang good for his situation and he gained about 5 ounces since last week. Penny, well, that is another story altogether. Our little piglet is up to 12lbs 1oz. It's hard to believe she was 1lb 7oz when she was born and barely 5 when we brought her home. Our little girl is growing up!

Just in Case You Were Wondering...

...Isaak is, in fact, at home and doing well. His stay on the pediatric floor at Duke was just a formality and he was discharged after one night with no fanfare (though he did make friends with the nurses).

We really won't have an update on the situation with his eyes until Monday morning. He has a follow up appointment at Duke Eye Center with the surgeons.

Otherwise, everybody is doing pretty well. The last official weights we had on these two, Penny was just shy of 11 and 1/2 pounds (I bet she is closer to 12 and 1/2 now) and Isaak was just a tick over 10. So "Little Bit", as I had taken to calling her, really isn't anymore. She appears to be taking full advantage of that intact digestive tract she is sporting to pack on the pounds and inches. Isaak is jealous. Honestly though, if we didn't have Penny to compare him to, I think his growth would look great to us and according to the doctors, his growth really is quite good given his disadvantages.

He had a visit with the GI Docs, GI Surgeons and Speech Therapist at UNC last Wednesday and everyone was pleased with how well he's doing. Amazed really. The surgeons increased the size of his G-tube (since he was a tiny tyke that didn't even weigh 5 lbs when he had his reanastomosis) and were otherwise happy with the way everything looked.

The GI docs have been very happy with his feeding progress and he's now getting 5, 45ml (1.5oz) bottles a day. This is quite an increase from the 3x10ml he was getting when he came home. He's still getting TPN via his Broviac but there is hope we can start tapering that down soon since he's doing so well with his g-tube and oral feeds. They have decreased the amount of dextrose in his TPN and that, combined with the oral feeds, has been great for his liver. His total bilirubin is down to 5.3 compared to 11.6 not long after he came home from the hospital. Remarkably, he barely even looks jaundiced now. Ideally, the bili level would be below 1.2 mg/DL, but we'll take what we are getting now, yes sir!

The speech therapist was making sure he was doing OK with his feeds. When we first began increasing bottle feeds, he was having some trouble developing suction. Apparently, that was just due to inexperience and he is now doing a great job and they did not have any concerns.

I took my first extended trip out of town since last spring...and nothing terrible happened. Things like that really ride in the back of your mind. Grandma Karla is in town too, so that made it a little easier on everyone. I wouldn't have taken off if Bekka was by herself that entire time.

Look for an update on Isaak's eyes later this week and new photos by the end of the month. I'm going to start  uploading photos about once a month just so I'm not chasing my tail all the time trying to keep up.

This Post Just Couldn't Weight

Yes, the pun is horrible and completely intended. That's just how I roll.

In big news, Isaak was weighed today: 8lb 12oz
Penny was weighed today: 8lb 12oz

Technically, he weighed 10 grams more (3970g vs. 3960g) but Penelope has caught up with and is quite likely to soon pass her brother in weight. Isaak has been bigger than Little Bit since they were born! She was 1lb 7oz and he was 1lb 11oz (780g vs. 650g), and he has typically maintained an 8oz margin for months.

So why the sudden overtaking maneuver on Penny's part? Simple: She eats like an NFL linebacker and still has her entire digestive track, whereas Isaak is getting about 30% of his nutrition via TPN and the rest via g-tube and three small bottles a day. She can just consume, and more importantly, process more calories than her younger brother.

What is amazing is that Penny isn't chubby at all. She has a tiny double chin and a few small rolls on her legs, but is mostly solid muscle. Apparently all her food consumption is going right into getting bigger. Isaak is definitely the chubbier of the pair and looks really healthy - he just isn't growing as fast. They will both get measured at the pediatricians office on Wednesday and it will be interesting to see how much longer she is.

Please don't take this development as a negative. Overall, Isaak is doing so well! He's gaining at a nice steady clip of 0.5 to 1oz per day and has tolerated every feed increase we've tried since coming home. In fact, right now he is at 16ml/hr - the rate that caused him to start dumping while we were in the NICU. Of course, he also weighs probably 3 lbs more now than he did then and should have had a commensurate increase in digestive tract length and development.

In very good news, we have been allowed to start decreasing TPN as his g-tube feeds increase. Hopefully we'll start to see a drop in bilirubin levels as the ratio of oral/enteral feeds to TPN increases even further.  To stop TPN, he would need to be at about 25ml/hr of enteral feeds. Of course, as he grows and gains weight, that target moves out a bit, but we are optimistic we can get rid of TPN in a reasonable time frame. Truly, from what we've found in our research, he's doing remarkably well for a short-gut baby.

He has a long road ahead but is on the march like a little soldier.

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.

Memorial Day Update

Yes, we know it's been 5 days since we last updated on our little guys. Let me tell you that overall that's been a good thing. Auntie Amanda was down last week helping us not go crazy and getting some things done in preparation for that so far away yet not too distant homecoming day (We already miss her. It was like old times). That left mommy and me to visit our babies and hold them and watch them grow. They have had a pretty good few days.

Health-wise, both are doing well. Isaak's recovery from surgery has been termed remarkable and they ended up cutting short his antibiotics and starting oral feeds on Friday (5/28), 3 days earlier than expected. He is up to 1041g (2lb 4oz) while Penelope might be up to 990g (they are a little suspicious of that number tonight so they will be weighing her again). Penny is getting 18ml of milk+HMF+Protein. Isaak seems to be tolerating his light feeds pretty well and is getting 1ml per hour on a continuous feed as they try to get his system restarted and monitor his outputs. He has to get up to 4+ lbs before they will attempt the repair surgery to reconnect his upper and lower intestines. The quicker this happens the better as it allows him to get less IV nutrition and reduces the chance for liver or kidney damage.

From a respiratory standpoint, Isaak may finally be outdoing his older (but smaller) sister. They are mixing and matching bubble CPAP and vapotherm with him. When he's on vapotherm, it's at 2 liter of flow with a room air mix. Penny is only on 1.5l of flow on vapotherm, but they can't seem to get her O2 mix down much below 28%. This happens sometimes with these little guys. Even at higher flow rates, she was wanting a similar level of oxygen.

I've put up new pictures. We have more than this on the other camera and I'm going to try to get some new pics of Penny tomorrow as the only ones I had available were a couple of weeks old. She looks so different now! You can see that Isaak is really a cutie and is growing in a head of soft, blond hair. It looks more than a little bit like his older brothers to be honest. That's a very bittersweet thing.

Many Thanks and an Update on our Little Troopers

So obviously this has been a crazy couple of weeks. I mean, it wasn't like it was normal before but Isaak's whirlwind transfer to UNC and sudden surgery have added a whole new element of insanity. Tomorrow marks one week since he was moved over there. Maintaining a presence at two hospitals, home and work has been...challenging. Bekka spent a couple of nights at the Ronald McDonald House and a couple with our friend Scott. I suspect both of us will be crashing his pad more than once as we try to split our time between our two beautiful babies. I spent the week working, visiting Penny and somehow squeezing trips to Chapel Hill into the equation.

So yeah. It's been nuts. We have some serious decisions to make as to where our babies should be and how we are going to manage all this. I'm sure it will become clear in due time.

After Ollie, we really had hoped to be the folks helping others rather than being helped. Never did we anticipate we'd be receiving kindness from so many, so soon. To everyone that has been helping out and checking in and just generally being useful: Thank You. From the bottoms of our hearts. Thanks Amanda M. for coordinating so many people and being the usual kind and caring person that you are. Thanks Amanda H. for coming down and helping us during this wacky week (love ya sis!). Many thanks for everyone trying to bring or provide meals - we have been here with such randomness that we've had to postpone many of them but I know we are going to need them and will enjoy them in the future. Finally, a big (40 gallon?) bag of gratitude for Lisa and Jenny for taming the lawn monster. Being away from home and getting 3 inches of rain had sorta turned the yard into a small pasture. Hopefully I can keep it under control now!

And now what you really tuned in for:

Penny continues to be a little rock star. She is doing well on Vapotherm and the nurses bump her oxygen up and down depending on how she is doing sat wise (and whether she is on her back or tummy - she really loves her tummy). She is tolerating feeds with no residuals and is now up to 17ml every 3 hours. Thanks to this eating regimen, she has managed to get up to 860g (1lb 14oz). She had been experiencing a bit of tachycardia this week so they decided to take her off caffeine to see how she responded. She responded by not only lowering her heart rate but by having almost no bradycardia episodes. It's pretty amazing for a 29 weeker to be off the juice, but she is.


Isaak continues to be a strong little fella. He has a long road ahead of him, but for now the doctors are astounded at how well he is doing recovering from the trauma of surgery. He really had been starting to turn a corner before the NEC set in and I think he just resumed that path afterwards. We won't have any idea on his long term prognosis for weeks yet, but in the short term he is a model patient. Of course, he is being fed exclusively intravenously right now, but has still managed to gain weight and is currently at 960g (2lb 2oz).

That's all for now. We'll have more updates this weekend and hopefully I'll have the time to get some new pictures up.

Penny's Moved and Isaak's Improved

Things are starting to look up for Isaak.  His respiratory status is improving hourly.  They keep weaning him slowly from the ventilator and hope to extubate him soon.  He'll go back to bubble CPAP.  His pain medication is also being weaned and that will likely help with extubation as many pain meds are respiratory depressants.  They put a new PICC line in so that he can get more dextrose to plump him up.  (Currently, he weighs in at 940g.)  And he's making lots of wet diapers - another good sign.  He's still receiving antibiotics and IV nutrition.

Neil visited Penelope on Sunday and her big news is that she's moved to an "intermediate" nursery since she is doing so well.  Her apnea and bradycardia episodes are minimal and largely all self-resolved.  She is still on Vapotherm and her rate was lowered from 3 liters to 2.5 liters.  Her weight is up to 780g (which is what Isaak weighed at birth).

That's all for now, but hopefully there will be more good news to come.  We still have a long road ahead of us.  There's a lot of uncertainty especially where Isaak is concerned.  So please continue to keep us in your thoughts and prayers.

Weight Gains, Head Ultrasounds and More

I'll go ahead and apologize now for this post in advance.  We're both pretty tired.  (It's amazing how traveling back and forth to the hospital wears on you.)  So tonight's update will be brief.

• Daddy got to hold Isaak tonight!  We've got pictures, but they'll have to wait until tomorrow.  Isaak was so sweet though.  You could tell that he wasn't really able to focus, but he kept opening up his eyes to look up at his daddy.  Neil and I have now held both our son and daughter.  =)
• Penny now weighs 710 grams.  Isaak weighs in at 810 grams.  Both are now above their birth weights of 650 grams and 780 grams, respectively.  A couple days ago they both hit their exact birth weight on the same day.  Could they already be showing us signs of their twin connection?
• The amount of breast milk each is receiving is steadily increasing.  Isaak is getting about 8ml every 3 hours and Penny gets 7ml.  Assuming they continue to tolerate their feeds well, they will get a slight bump in the amount every 24 hours.  If all goes well, they'll be on solely breast milk by the end of next week.  (No more IV nutrition!)
• Respiratory wise, Isaak is still the trouble maker.  He continues to have several apnea and bradycardia spells each day.  Most of the time he self-resolves or needs only mild stimulation to recover.  He has been taken off of the SiPAP and placed back on CPAP.  The nurses are trying to suction him more frequently since he seems to have more gunk in his nose and throat than his sister does.  Penelope has occasional "A's and B's" - as they say in medical parlance - but nearly all of hers are self-resolved.  Neil and I have tried to get her to talk with her brother about these things.  So far, though, she has refused to set him straight.
• Despite several attempts, there is still no PICC line for Penny.  They may have to do just a plain ol' IV for her.  Her UVC in her umbilical cord is still in and still working well, but it will need to be taken out soon.  After 10 or so days, the risk of infection outweighs the benefits it provides.
  
• One of the many things that preemies often experience is a bleed in the brain known as an intraventricular hemorrhage (IVH).  So last night both Penny and Isaak had a head ultrasound. Penny's showed a mild Grade 1, possibly Grade 2, IVH that was isolated to the right side of her brain.  Isaak had a Grade 1 IVH on both the left and right.  Short-term and long-term outcomes with Grade 1 or 2 are very good.  In fact, most doctors and nurse practitioners that we've spoken with say that there is nothing to be worried about.  To be on the safe side, a second head ultrasound will be done in about a week.  This is done just to monitor and track the size of the bleed.  (Who knows...full-term babies may also have mild IVH's, but they aren't screened for them.)
  
  Thank you all again for the many prayers said on our family's behalf.  We sincerely appreciate every one of them.

6 Month Check Up

We saw Ollie's pediatrician today. We love Dr. Goodmon. She has been fantastic through all of this. She even got us a couple of the blue bulb syringes from the hospital. You know, the ones that actually work. (We've purchased and thrown away four that were useless.)

Today, Ollie got 5 vaccinations:

• oral Rotavirus
• flu shot
• Synagis, a.k.a. the RSV vaccine
• Pentacel - diptheria, tetanus, pertussis, polio & Hib
  
• Prevnar - pneumococchal bacteria (like meningitis)
  

He weighed 14 pounds, 1.5 ounces - 3rd percentile.
He measured 26 inches long - 26th percentile.
His head circumference was 45.75 centimeters - 92nd percentile.
A "big" thank you to Daddy for the large noggin!
We'll go back in a month for another flu and Synagis shot. And then in 3 months for his 9 month check up! My how time flies...