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.