Improvements and Departures

Well, let's start with the good news, shall we?

Isaak's transfusions helped him tremendously.  His skin tone became nice and pink again.  His breathing improved.  His temperature and its regulation also improved.  And his blood tests?  They grew nothing - no bacteria and no fungus.  CRP levels dropped.  So they've stopped the antibiotics, antifungal and caffeine.  He is on heated and humidified oxygen (at 21% or room air concentrations) at a flow rate of 1 lpm.  (As Neil would say, Isaak likes the "wall juice.")  He also ditched the isolette (again).

Penny remains sans respiratory support.  And it is SO much easier to get her out of the crib.  She has occasional desats but usually recovers quickly on her own.  A few times she's been given blow-by oxygen (another phrase we learned with Ollie and had hoped never to use again.)  They've slowly gotten her back to full feeds (about 45ml) - her first full feed will be given tonight at 11pm.  And we've been working on breastfeeding.  Each time she does better than the last time.  It's not an exact science figuring out how much she's gotten, but we're fairly certain that she got about 40ml when she nursed at 5:30pm today.  On the whole, though, she's doing really well. 

Isaak's surgery is Tuesday.  While we're excited that he's going to get reconnected, it's scary to think of him going under the knife...again.  Before Isaak was back-transferred to WakeMed, the surgeon mentioned that we should think about having a g-tube put in at the same time as the reconnect.  With a g-tube, Isaak could get continuous feeds overnight.  (Gee, there are a couple more phrases we'd hoped to never use again.)  The goal of doing continuous feeds is to maximize the adaptation of the bowels.

In preparation for his surgery date, Isaak will be transferred to UNC on Sunday.  And, if there is space available, Penny will, too.  We are very sad to leave our ICN family at WakeMed.  This was a hard decision, but things will be stressful enough without the added stress of children in different hospitals.   

Speaking of hard decisions and stressful situations...

It's coming.  Ollie's first angel anniversary on August 3rd and what would have been his second birthday, August 5th.  Neil and I have both been talking about where we were this time last year.  July 4th of last year we were at the ER with Oliver and I had just broken both elbows.  July 7th, 8th and 9th of last year we decided (again) that bipap was not for us and left the PICU at Duke.  July 19th of last year we made our last trip to the ER with Ollie - we knew our time with him was growing very short.  And August 3rd of last year...he was gone.

We love you, Ollie Bear!  And we still miss you terribly.

My Son is a Vampire and my Daughter Eats via her Scalp...or Just another Day in the Life of a Micro-Preemie Parent

So the last few days have been challenging. The slightly macabre post title really doesn't even capture the half of it. In the back of our minds, we sort of had the idea that things were sailing along too smoothly. The next big bump appeared to be Isaak's ostomy reversal (next week if you can believe that!). We dared to hope that all was well. The twins had other ideas. The main one?

Scare the crap out of mommy and daddy.

So we don't know if we are out of the proverbial woods with them yet, but here is a quick rundown of what has transpired since Thursday:

Thursday afternoon, it was becoming pretty apparent that Penny was not feeling well. She was not complaining during diaper changes or assessments - usually she cuts up like crazy - and her little belly was starting to look distended. You can see now that we were suddenly terrified (absolutely, unbelievably terrified) when thinking about where this could be headed. Yes, the very real possibility that our little girl had NEC reared it's ugly, cobra-like head.

X-rays showed there were large gas bubbles in the intestines but no free air. All oral feeds were stopped and TPN was ordered up. The last thing you want to do in a NEC case is keep shoving food in there and complicating things even more. Repeat X-rays were carried out over the next couple of days. Nothing that could be interpreted as NEC showed up, and Penny continued to have good bowel sounds. Eventually, she passed all the air and they began very low volume feeds on Sunday. They will gradually ramp her up during the week to full volume while monitoring her response very, very closely.

So what was this episode? Is it really resolved, or will it return? The answer to both of those questions is, unfortunately, "No one knows." They think it might have been a reaction to human milk fortifier (HMF). She has been getting this since about week 2, but feed volumes have really been bumping up lately and so it might have crossed some comfortable threshold.

We wait with bated breath as she moves back to oral feeds. They are going to withold HMF and just feed her mommy's finest until her volume is all the way back to max. We are by no means out of the woods but at least positive progress has been made. Cross your fingers!

In the good news vein, she has spent the whole day sans supplemental oxygen or flow. Her sats have stayed in the upper 90s and she has been a little trooper.

Oh, the "eating via her scalp bit"? Penny is a very bad "stick" when it comes to placing IVs. (Remember they were never able to place a PICC line in her.) After 3 IVs in 3 days had to be replaced, they resorted to a scalp IV. Apparently there are "lots of juicy veins up there." So far, so good. She's been happier and her IV hasn't acted up. Here is her IV/Hair Bow (via cell phone cam, so not the greatest):

On to Isaak. Little guy is getting a transfusion today and tomorrow and is on two different antibiotics, an anti-fungal and they resumed caffeine.

Not yay.

He had been just cruising along gaining weight and flirting with nurses. Then on Saturday he had a low hematocrit, low white cell count and low(ering) platelet count. He wasn't really acting up, but wasn't fully himself. Another set of blood work this morning confirmed the trend. Even lower readings were recorded AND he had slightly elevated CRP levels (C-reactive protein). At the same time, he was beginning to have more bradycardia and apnea events.

All this likely points to an infection. According to the doc, the blood work is behaving more like fungal infection, but given his history and the recent changing of the PICC, she would suspect bacterial. Changing PICCs can release bacteria into the bloodstream even though they do everything they can to avoid it.

So he probably has something.

Maybe.

It could also just be stress and anemia (which he certainly has).

Pending cultures, they will continue the medication. You do NOT want your preemie to get a full-blown infection. Their immune systems just aren't up to it and prophylactic antibiotics can head off major issues. The caffeine already appears to be reducing his apnea and bradys and the transfusions should help bump his energy level up. We really want him to be healthy next week!

To add to the stress on his little self, he has also gotten 5 immunizations over 5 days and it's possible that those are messing with his body and all the readings. He needed them and was doing fine when they began but there is a reason they only give one a day to these little guys! (You'd get them all at once if you were a normal 2 month old...and you would do just fine). Penny is on day 4 of 5. They started on the same day, but had to suspend hers due to her difficulties. She seems to be a-ok so far.

So that is all the news that is fit to display via photon emissions. We'll hopefully have another (positive) post up sooner rather than later.

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.

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.

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.

Just a Tiny Update

Hehe. OK, so both of the little guys had a great day. Penelope is now on a device called a Vapotherm. It's essentially a heated and thoroughly humidified oxygen feed through a tiny nasal cannula. Frankly, that is absolutely amazing. She may very well wind up back on the CPAP but in the meantime she is enjoying a bit of time with a lot less bulk on her head. You can actually see her little face all the time now.

Isaak had a followup echocardiogram this evening to examine his Patent Ductus Arteriosus. The results reveal that he still has a small PDA. Yep, small. Previously it was classified as large so this is definite improvement. Little guy does not have any of the most concerning symptoms so the plan is to observe him and hope that A) It does not grow and B) It heals on its own. If symptoms worsen, the possibilities include another round of neoprofen treatment or, as mentioned before, surgery. He is still on SiPAP but is doing very well and is pretty much staying on room air concentrations. The transfusion really did wonders for these little guys. They will probably need another in a week or two, but it's really nice to visit them and not have constant monitor alarms going off.

Both babies are back on breast milk. Penny is up to 14ml and they have doubled the HMF in her feeds. This provides extra vitamins and calories and hopefully will spur additional weight gain. Isaak was already back up to 7ml this evening (remember that stopped his feeds for the neoprofen dosing) and will likely be bumped again tomorrow.

Transfusions, PDAs, and tough days for Isaak

First off - I know we don't talk about her much, but Penny is doing great. (Which is why she doesn't get as much press coverage in this blog). Little girls often do very well as preemies and she appears to be no exception. We just need her to drag her little brother back onto the program! You'll want to check out the new pics before proceeding because they are just so darn cute.

So Penelope is doing great but Isaak is having a rougher go of it right now. Over the last two days, his apnea and bradycardia episodes have become more frequent. They are not necessarily worse, but there definitely have been more. This led the doctors at the ICN to begin considering the possibility that Isaak had a PDA, or Patent Ductus Arteriosus. Please click the link for more details, but this is essentially a condition where a blood vessel connecting the pulmonary artery to the aorta does not close at birth. It's not uncommon at all in preterm infants and also occurs in full term babies. It places additional stress on the lungs and in some cases, like Isaak's, is asymptomatic until a week or more has gone by.

An echocardiogram conducted this afternoon appears to confirm that he has a fairly large PDA. The first treatment will be 3 doses of ibuprofen given 24 hours apart. This often works to close or greatly reduce the size of the PDA. Both of the twins received doses of indomethacin (another NSAID) when they were born in order to try to head off this very condition, but apparently in Isaak's case this wasn't quite sufficient. If the ibuprofen treatment doesn't work, the next option is surgery. It's a fairly routine procedure, but any surgery on an infant that tiny is risky (and very scary for the parents). In the meantime, we hope and pray that the ibuprofen does the trick.

Treatment with ibuprofen carries a risk of causing NEC, or Necrotizing Enterocolitis, due to the reduction of overall blood flow in the body and to the bowels in particular. Isaak has shown no symptoms of NEC so far and has processed mommy's milk well, so let's go with the positive outlook on this particular issue. They will be stopping his feeds and increasing his IV nutrition while he receives the ibuprofen as a precaution.

Finally, both of the little guys are getting transfusions over the next couple of days. You probably did not know this (we didn't), but preterm babies do not make red blood cells. Normally at this gestational age, mom would be providing everything they need, including adequate red blood cells. Their hematocrit levels have steadily fallen since birth and are now at the point they need fresh blood to help them along. THIS IS ABSOLUTELY NORMAL. It's likely they will have a few more transfusions before their bodies are ready to manufacture a supply. We really hope that this procedure will help with Isaak's bradys and apneas as the oxygen carrying capacity of his blood will greatly increase.

We've had two very good weeks with our little guys but it looks like the first setback has finally shown up. Keep sending the positive vibes and the prayers and thanks for all your support.

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.

27 Weeks Today

Today is 27 weeks gestational age for the twins. What an amazing thing. Of course, we wish they'd decided to hang out in mommy's tummy a bit longer but they are moving right along and we are so thankful they are here.

Monday, Isaak managed not to need any "neo-puff" oxygen to get his sats back up after his apnea episodes - he recovered all on his own. He was rambunctious enough to pee everywhere when they were bathing him. I guess he wanted a change of bedding too ;)

On Monday, both babies appear to have gotten back to birth weight. The goal was to have that occur in the first 2 to 2 1/2 weeks so they are a little ahead of schedule. They are currently receiving 4ml of milk every 3 hours with minimal residuals.

On Monday, Bekka got to hold her little baby boy for the first time.

Monday was a better day.

Quick Update Before the Week Begins

So Isaak has had an ok but sorta not day. It's really a continuation of the trials I mentioned in last night's post. He is experiencing breathing challenges his little sister simply isn't. Everything is well within the norm for early preterm babies, but it's still a little scary for Mom and Dad. He's well looked after (extremely) by the nurses and doctors but wow is it not much fun watching them rush to his bedside. We've had far too much experience in our lives staring at pulse-oximetry readings and I can't say we are happy to be doing so again.

Today he was recovering more rapidly from his spells than yesterday. It wasn't until late this afternoon that he had an episode where more aggressive intervention was needed (read: oxygen). Otherwise, we saw a lot of little dips in heart rates and stoppages in breathing that went away on their own and pretty fast. The bradycardia (slowing heart rate) really isn't too scary in and of itself - it's when it's coupled with extended apnea (stoppage of breathing) episodes that it gets unnerving. Penelope experiences "bradys" fairly regularly but it's almost never accompanied by apnea. In Isaak's case, the apnea is usually causing the bradys. Little guy "forgets" to breathe and that drops his sats and his heart rate.

He is also having some problems with secretion management (here we go with things we know too much about again!). They don't know if he's making extra slobber or just not getting it down. The swallow reflex is often underdeveloped at this point. We all need to keep remembering they ARE supposed to be in utero at this particular juncture! As mentioned previously, the secretions are likely playing a role in his apnea episodes by creating obstructions. The nurses and RTs are doing everything they can to keep him clear, but they have to be careful not to irritate or injure his airways as that can cause inflammation and create an infection risk.

They say all this is normal but if he keeps it up he might wind up on the ventilator for a while. Everyone is hoping that can be avoided, but it is what it is. Hopefully his little brain can start coordinating everything a bit better! Maybe we can get Penny to teach him...

New pictures from last night are now up. Feel free to jump over and take a peek.

Isaak and his Not so Great but Not so Bad Day + Holding Penny

Today was a tough one for little Isaak. Last night they had discussed the possibility of switching him from bubble CPAP to SiPAP due to his recurring bradycardia and occasional apnea. This morning they made the switch. SiPAP differs from CPAP in that it actually provides "breaths" if they don't breathe themselves. If they are breathing OK, it acts like CPAP but if they need the assistance, it will pulse a set number of times per minute. CPAP simply provides constant pressure to keep their airways open and lungs inflated.

One positive: it appears that some of his issues might be caused by secretions. Twice, they suctioned out some pretty nasty stuff and he immediately began breathing and behaving better. We are well familiar with the impact of secretions thanks to our time with Ollie. We really hope that more frequent suctioning will help Isaak out. He had a fantastic late evening while we were visiting - let's hope it continues through the night.

In other news, Penny has been rock steady and I was even able to hold her this evening! Pictures will be forthcoming but let it suffice to say that it was incredible! She is just a little snuggle-bunny, so warm and soft. Feeling her little heart beat away in her chest is one of the most amazing things I've ever experienced.

Bekka's mom went home today. She was a big help during the week and we are so glad that she was able to meet her new grandchildren. We'll miss her.

Of Seven Days, Kangaroos, Poops, Pics and PICCs

Wow.

A week old. It is really hard to believe seven days have gone by since being woken up in the early morning by doctors talking about c-sections. It's been a crazy few weeks but we have two beautiful children fighting their way forward each and every day.

We are now moving into a critical time. Penny seems to be doing best, but this isn't uncommon as little girls are often at an advantage when born this early. Isaak is still experiencing quite a few bradycardia events but is keeping his O2 sats up. Both babies are pooping regularly; this is a huge step and means they are tolerating their food. The docs  hope to go up to 4ml per feeding on Sunday if all continues well. For reference, 13ml would be a full feed so they are getting there slowly but surely. Their best chance is for the doctors and nurses to follow the protocols gradually and carefully.

Isaak received a Peripherally Inserted Central Catheter, or PICC, today. His umbilical venous catheter had shifted and they needed a way to continue feeding and medicating him. They prefer not to use regular IVs as they don't last long in the tiny little veins. The PICC can stay in place for months and offers higher volume flow and a lower risk of infection. The placement was not picture perfect, but will be OK for now. Penny will probably receive one of her own in the next couple of days as her UVC will need to come out soon. If feeds continue to increase, they may only need it for a week or two. Let's hope that's the case!

Grandma Karla was able to hold Penny yesterday while they did a bed change and Bekka was able to perform a little Kangaroo Care with her today. Dad hasn't gotten to hold either of them yet but hopefully that comes soon. It's pretty tough not having had that chance. If Isaak is doing well tomorrow, I'm hoping to hold him during his bed change.

More pics are up of all this so pop over to the gallery and check them out.

Quick Update on the Twins

Just wanted to let everyone know that everything is going fine. We finally have some pics of Penny (with her eyes closed, sadly). I'll get those up tomorrow in the evening. Between trying to get some sleep, going back to work and visiting the little ones, it's been a busy day. The last few weeks seem like such a blur and it's so hard to believe they will be 6 days old tomorrow morning.

The little guys are still experiencing periodic bradycardia and apnea episodes but these have continued to be short and almost completely self-correcting. Periodically the nurses do have to jiggle them or tickle them a bit to speed up recovery. The nurses tell us they'll likely experience these episodes right up until they go home but they will get better with time. So often in the last month, hurrying up and waiting seems to be on the agenda every day. Overall, they truly are doing well and have exhibited no other issues except for the elevated bilirubin levels. Both are under bili lights again, but are expected to be off tomorrow. Again, this will be a common occurrence.

In exciting and very positive news, their feeds get upped tomorrow to 2ml every 3 hours. This is double what they are getting now and is a great sign they are tolerating mommy's delicious homemade milk (really, you should see them smack their lips when they get a little in their cheeks). Stomach residuals have gotten a little better every day indicating that processing is occurring. Now we just need a couple of tiny poopie diapers to make the nurses, docs and proud parents happy.

Something I forgot to mention yesterday: They are both in the same cubicle now so we can visit them together! If all goes well, they will eventually wind up in the same crib, but this is so much nicer for us to not have to "choose" which baby to visit.

Remember, pics tomorrow with any luck!

Mommy's been Discharged and Other News

Today, they let Mommy out of the hospital. We will miss all of the wonderful doctors and nurses at WakeMed that have been taking care of Bekka but it will be nice to have her home and I know she is so looking forward to sleeping in her own bed for the first time in almost a month. It's so very bittersweet leaving our babies there.

The twins are doing great today. They both had a couple of short apnea episodes but recovered on their own. This is very expected - they told us they will get a little worse before they get better. Self correcting is a good sign in any case. Did you know they give them caffeine via IV to keep them stimulated and breathing? How many times have you heard someone joke about needing a coffee IV, and these little guys actually get it. I think there are some espresso junkies that would be very jealous!

New pics have been uploaded to the Picasa album. Enjoy.

No other big news to report today.

Penelope and Isaak - Day 4

We hope updates decrease in frequency pretty soon but I know we have an anxious audience refreshing their browsers like mad waiting for the next update. At this early stage in their little lives each day is a big deal and everyone wants to know what is going on - we understand.

As of now, things look pretty good. Both babies seem to be tolerating mommy's milk well and it's really cute when they're fed. You put just a drop in their mouths so they can taste it and you can see their little lips smacking on the yumminess. Next they get a 1ml bolus feed through their tube. This allows them to associate the taste and sensation of the breast milk with having a full belly.

For those mommy's out there, Bekka is producing 2-3oz of milk every 3-4 hours. This is fantastic given the preterm delivery - it takes a lot of effort to get milk volume ramped up that early. She's a champ! We now have our own basket in the ICN freezer so we can put plenty away to feed them as they begin to eat more.

Bilirubin counts are just about in the normal range today and there is a good chance they will remove the lights tomorrow. We'll be able to see their little eyeballs! The twins will be on and off the "bili lights" over the next few weeks, but coming off the first time is a good step. Weights are still looking good. Penny remains at 620g while Isaak has dropped a bit more to 690g. That is still a good number and he had a bit more to give up. They'll be upping fluids and calories to keep both of them no more than 15% below their birth weight. The goal is to get both babies back to that weight by two weeks of age. 

We happened to visit earlier this evening just as they were starting Isaak's evening assessment. The result is that we have a few great pictures of him, some with his eyes open and without CPAP! Mysteriously, I can't pull them off the SD card using the laptop so you'll have to wait and see those after I get back to house and get them down/uploaded. Penny was on her belly under the lights so no great pics of her. We hope we can get a good shot of her little face very soon.

During the assessment, Bekka was able to hold Isaak in two hands (inside the incubator) while they changed his bedding. That was a very sweet moment. When I get the pics up, it will give you a better idea of his size. We really hope to be able to do "Kangaroo Care" in few more days and really get to hold the little guys. That will be a special moment.

Bekka should be discharged tomorrow. She's recovering very well from her c-section. Today, she has managed to walked all the way down to the ICN several times, getting a little faster and more confident with each trip. Not only is she recovering from surgery, but also from being in bed for 3 weeks.

What an amazing wife I have.

The Twins - Day 3

Today has been pretty much the same story as yesterday. Bekka continues to recover well from her surgery. She actually sent me to sleep at home last night because as she reasons it "Someone needs get some rest and I'm in the hospital".  After spending 3 weeks in here myself, I really didn't argue too much. She is having good luck steadily increasing her milk supply - something that will be so important for the babies nutritionally and to help them build immune systems from scratch.

Both babies are continuing to do well. Their bilirubin counts are decreasing. The nurses tell us they will likely be under the lights most of this week and then off and on for a couple of weeks while their livers get up to speed. Their skin already looks remarkably less red and purple than it did on their birthday.

The 48hr blood cultures for both came back negative! That's very exciting and meant they were both able to come off the more powerful antibiotics. Penelope will be on ampicillin for a another day or two as a precaution against lung infections since she had the ruptured sac.

Isaak weighed in at 730g this evening, about 50g lighter than this birth weight and Penelope weighed in at 620 which was 30g less than birth. This is considered very reasonable as they are both under the lights and only today started receiving food in their stomachs.

As of now, they are getting about a milliliter of mommy's colostrum/milk every 3 hours.The report from the first couple of feedings is good, as each had minimal amounts left in their tummies. Hopefully this means they can process milk without a problem. At this development age, preemies digestive systems are not "primed" and ready to go like a full term newborn. They have to ramp up their intake through their stomach slowly.

We forgot to relate one really neat thing in earlier posts. Nowadays, the nurseries take advantage of the umbilical cord and actually place lines into both a vein and an artery. This allows them to give fluids and take blood samples and instantaneous blood pressure readings without having to poke the little guys repeatedly. This is less painful AND greatly decreases the infection risk. Typically they can use this connection for about a week and a half. How cool is that?

That's all to report for now. I'm sure we'll have more as the week progresses.

Penelope's and Isaak's Second Day

Today has been a pretty good day. We went back to see the babies around 12:30 (boy did we both need sleep after being up 24 hours - and Bekka had a little thing called a c-section during that time!).

Both babies are still doing very well. They are under sun lamps to take care of the elevated bilirubin levels. Most impressively, both babies have already had a BM! That's a great sign that the plumbing is working well. We also found out that since being on CPAP, Isaak has had only 1 (one) instance of apnea and Penny none! Apnea is very common with these babies as they aren't used to having to do so many things at one time and their autonomous nervous system doesn't quite do everything smoothly sometimes.

The nurses in the ICN have take 3 photos for us. They are scans of so-so prints, but at least you can see the little guys. Just a warning that they are very very "real". Remember that they aren't quite done baking! In one of the photos, Isaak really looks like a little ET doll. You will also notice that their skins are red. This is due to the last two layers not yet having developed. That should happen in the next couple of weeks and they'll have more normal skin tones.

So many things stand in their way; from infection (their little immune systems are barely there) to high risks of cerebral hemorrhage and an increased risk of cerebral palsy. That being said, they have gotten off to a running start in their very young lives. Thanks for following their story!