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.

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.

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.