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.

Isaak is back at WakeMed

So after much discussion with many doctors, and after hours of agonizing between ourselves, Bekka and I made the decision to move little guy back to WakeMed. That transfer occurred today and he is now ensconsced in an isolette right next to his sister. We are, of course, ecstatic to have them together again and close to home. It was tough being daddy and not being able to easily see my little guy whenever I wanted, and mommy had a really difficult time being in Chapel Hill and not seeing Penelope every day. Their nurses at WakeMed were almost as excited as we were to see him again and that was very touching. It's still scary when you do this type of transfer on a baby that is so small and delicate, but we felt it was the right thing to do for us and for Isaak. Now we wait and watch them grow (together!) and hopefully stay healthy.

We must give many thanks to the doctors and nurses at UNC. Their efforts saved his little life and they have been caring for him well these last 2 1/2 weeks. Isaak isn't done with UNC, of course. He is tentatively scheduled to have surgery on Tuesday, July 13 to repair his ostomy. He'll probably be transferred back to UNC a couple of days before that and he will be there 1 to 2 weeks for recovery and GI services as they calibrate his TPN levels and feeds before coming home.

Of course, to complicate this, if Penny stays on schedule, she will probably be coming home right about the same time. Luckily we've no shortage of volunteer grandmas, aunts and friends willing to step in and babysit. Funny that.

They both had pretty good days. Isaak's was perhaps a bit better. As mentioned in the last post, Penny is experiencing anemia right now and she's been having a few more cases of "A's and B's" as the nurses call them (Apnea and bradycardia episodes). She had a couple of deep de-sats while we were there this evening. No neo-puff was needed but it was pulled out. That isn't like her at all so they'll be keeping an extra close eye out. She really hasn't been herself today - much more lethargic than normal. One thing we keep telling ourselves is this is a process with steps both forward and back. They are only 31 weeks gestational age as of today and that is pretty tiny. Little girl has also been off caffeine for about 2 weeks, which is significantly earlier than normal so she's been way ahead of the curve. We'll see how this goes.

In other news, Grandma (Bekka's mom) arrived from Oklahoma today. She couldn't wait any longer to see the babies again. She'll be with us through Saturday. (Well, I say us, but really with the little ones :)

That's all the news that is fit to print for now....

Improvements for Penny and Isaak

Hooray!  I like typing the word "improvements" in the title!  =)

Both babies completed the second half of their transfusions yesterday evening.  Their nurse overnight and their nurse during the day today both said that they are steadily improving - many fewer A's and B's (apneas and bradycardias).  In fact, the nurse during the day today said that Isaak had only had 2 episodes today.  (She was their nurse from 7am until 7pm and she told us this at 6pm.)  Three cheers for red blood cells!

Penny began getting her breast milk feeds again around 11pm last night. She tolerated them well and has now had her UAC line removed.  No more IV pumps for Penelope!  She's up to 12ml of breast milk at each feeding which is a "full" feeding for her size.  They have added human milk fortifier (HMF) to my breast milk in order to help her gain weight.  (Isaak's feedings will also have HMF.)

Isaak has received two doses of neoprofen to help close his PDA.  He will receive his third dose tonight.  Depending on how his little heart sounds to the nurses and doctors, he may get one additional dose tomorrow.  If they don't give him a fourth dose, he'll start his breast milk feeds again in the morning.  In either case he'll get another echocardiogram on Monday. 

While I was visiting them yesterday, Penny decided to be extra special cute and open her eyes!  Be sure to check out the pictures.  Then she managed to be even cuter....I know, I found it hard to believe as well.  But I have video to prove it!  Her big brother would be so proud of her.  =)

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.

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.