Update on Isaak's Surgery

Today was a very tough day. Our little boy had to go under the knife and we didn't know what the outcome would be. Unfortunately, it was neither as simple nor as positive as we'd hoped.

It turns out that Isaak was indeed suffering from NEC. It had the courtesy to wall itself off from the rest of his body such that no air leaks had ever occurred to tip them off on the x-ray. When the surgeons opened him him up, they saw white intestines - a sure sign that the tissue was dead.

In the end, they removed over 50% of his intestinal track above his colon.

The good news (!?!) is that his colon was not affected  and neither were his uppermost small intestines. They also had to perform an ostomy to allow his bowel the time and environment to heal. In 7-10 days, if he's doing well, he will begin receiving small amounts of food and they will monitor how it looks when it passes out of the ostomy. In a few weeks, they will reconnect his upper and lower intestines and hope that all goes well. Before all of that, the first order of business will be keeping him comfortable and infection free over the next few days. Bowel surgery is always risky and even more so when you are talking about a micro-preemie.

Isaak is currently heavily sedated (and will be for several days) but was alert enough to open up an eye and look at his mommy while she was holding his hand. He is still on a ventilator, but they are looking at lowering his setting as his lungs are no longer being compressed by his guts. I have to say that he certainly looks a lot more comfortable than he did the last few days before the procedure. These are small things, but they are the things at which we grasp.

The surgeons are confident they removed all of the necrotized tissue. The scary thing is there is no guarantee that it won't come back. The chances aren't really high, but NEC is very poorly understood. Apparently, in terms of the likelihood of a recurrence, it is better that they operate after the necrosis has essentially stabilized than to do it too early.

The long term prognosis really is a mystery. In some ways it was good that this happened at such an early gestational age as the body has amazing ways of adapting and repairing itself. It's unknown if he will be able to absorb enough nutrition from strictly oral intake in the relatively near term. There is a chance he could leave the hospital in a few weeks only receiving oral food, there is chance he might need oral AND IV nutrition (likely I think) and there is chance that he will be strictly IV. The hope is that things improve gradually and consistently. During normal gestation, much of the growth in the bowels occurs in the last trimester. Hopefully he gets an extra shot of growth with what he has left.

I will not lie, this has been extraordinarily difficult for Bekka and myself.  We have been through so many things in the last two years with Oliver and now these little guys. This ranks up there as one of the toughest days we've ever had. To be this powerless as a parent and to see such a tiny little baby in so much distress is inconceivably heart-wrenching. No one ever said that being a parent would be easy, but I'll be damned if we expected it to be this hard.

We love you Isaak.

(Hopefully) No Surgery for Isaak

So, Isaak's transfer to UNC was pretty painless.  That's not to say that it is easy having Isaak at UNC and Penny at WakeMed.  Or that it's easy to see Isaak so sick.  It is most definitely *not* easy.

Isaak's x-rays have not shown any changes.  Nothing has worsened, but nothing has improved either. His bloodwork and clinical symptoms point to NEC, or "neck" in medical parlance for Necrotizing Enterocolitis.  Sadly, Isaak certainly had a lot of the risk factors for NEC.  And this is not the diagnosis we wanted.  It is very serious and they will be closely monitoring him.  X-rays and bloodwork will be done every 6 hours (at 2am, 8am, 2pm and 8pm).

Right now, since he does not have a bowel perforation, he will not be having surgery.  However, he will be examined by the surgical staff in the event he does need surgery.  The plan, though, is to treat him with antibiotics and continue the "watchful waiting" that we have become so good at.  (Not that we ever wanted to be this good at it.  Sigh.)
 
The doctor placed an arterial line shortly after Isaak arrived so that they can monitor his blood pressure in "real-time" and so they don't have to stick him every 6 hours for blood.  And since he'll be having lots of blood drawn for bloodwork, we anticipate more blood transfusions.  Again, this is fairly normal and expected with sick preemies.


Neil and I both noted today that the poor little guy is more lethargic than he was yesterday.  We can tell that he's tired and just plain wiped out.  He's letting the vent do most of the work for him.  Only occasionally does he actually breathe "over" the vent - taking more than the 30 or 40 breaths per minute that the vent is giving him.

Isaak's little belly is taut and shiny and reddish.  It looks uncomfortable.  We both commented today that he reminds us of Ollie right now.  Because his tummy is so distended, his chest and abdomen have that bell shape that became so familiar.  And his hair has that same reddish-blonde hue as his big brother's.

Talking about those similarities today brought tears to my eyes.  I think this is the first time since I was admitted to the hospital in early April that I have let my emotions have the better of me.  It won't likely be the last.

I never would have expected that all three of my children - my two sons and my daughter - would have to fight so hard to live and breathe.

Please keep praying for Isaak and Penny.

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.