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.

Twins, Hospitals and Amniotic Sacs

A business trip took me away from home last Tuesday (4/6). I was a little worried about leaving 5 month pregnant Bekka and the little guys in her belly alone for 3 days, but everything looked great! She'd had a 20 week ultrasound that indicated the babies were healthy and growing and generally just frolicking away their time in the womb. On 4/5, she'd been to the OB and everything was looking solid. So I went to Dallas without much worry at all.

The workshop was very productive and enjoyable, but on the way back, things began to get complicated. Storms in Atlanta (how I hate that airport) were backing up all flights and my flight out of DFW didn't leave for 2 hours and only after 3 gate changes. The only good news was that my flight to Raleigh was equally delayed because the same crew was flying us home. After 3 more gate changes, we finally boarded. I'd turned my phone off around 12:30am (this would be early Friday morning at this point) as we were preparing to pull away when it suddenly rang (HOW?). It was Dave trying to reach me. I thought he might just be razzing me for being so late, but after 3 tries to connect, we finally did and Bekka was immediately on the phone.

Dave was at my house.
Bekka sounded calm but scared.
This isn't good.

And it wasn't.

While going to the bathroom that night, Bekka noticed an unusual amount of blood. All women get a bit of spotting here and there during pregnancy but this was more than that. Further, there was something protruding that "felt and looked like a bouncy ball." She knew immediately it was her amniotic sac and went to lie down. She called the OB, EMS and Dave. Because our OB works out of Cary, Bekka had the EMS take her to WakeMed Cary.

While waiting for the EMS to arrive, she had Dave call me. So I'm stuck in a tin can at the crappiest airport in America, my wife might be losing her pregnancy and I know it's going to be 2 or 3 hours before I can see her.

I do not recommend this.

I finally made it to the hospital at about 3:30am. Bekka was resting (somewhat) comfortably with her feet higher than her head. I now know this is the Trendelenberg Position. At this point, it did not appear that the amniotic sac had ruptured, but it was still protruding from the cervix when she was examined. This was in a effort to get the amniotic sac to withdraw on it's own back into the uterus.

Thus began our up and down saga of the last few days.

Much of this has been posted on Facebook and via email, so some of you know what is going on, but suffice it to say that a risky but non-optional emergency cerclage was required on Sunday morning, as she was about 7cm dilated. The operation involved using a balloon catheter to push the amniotic sac back into the cervix and slowly, incrementally stitching it closed. Bekka has slowly improved over the last day and a half after experiencing pulmonary edema after surgery. Leakage of fluid also seems to have slowed greatly.

The little girl lost a lot of fluid from her amniotic sac (it is guessed through a leak high on the amniotic sac as the doctor could not see an obvious rupture). The little boy's amniotic sac appears to be intact and full. Both of them have maintained strong heartbeats and we hope that the little girl's sac will heal and refill as amniotic fluid is critical for lung development in tiny babies.

Right now the biggest risks are the onset of premature labor (Bekka is receiving meds to slow/prevent this) and infection. With a ruptured sac and the protrusion into the outside world, contamination is a great danger and any infection can spread from baby to baby and to the mother. She is on two types of antibiotics to fight the infection danger.

24 weeks of gestation is considered the cutoff for preterm survival with a reasonable chance of avoiding brain damage and major physical handicaps. The babies will be 23 weeks tomorrow (4/13). We will be trying to get transferred to a hospital with a full Level 3/Level 4 NICU at the end of this week. Such a facility offers the best chance of healthy survival in case she delivers. In this area, that is WakeMed (main hospital), Duke and UNC. Obviously, the best case is that everyone does fantastically well and we can get way beyond 24 weeks. Full term delivery is very very unlikely, but getting anywhere near 30 greatly increases survival chances and infant health.

So:
Emergency Cerclage
Low fluid level in the little girl's sac
Normal fluid level in the boy's amniotic sac
Currently stable and holding
High risk of infection
High risk of early labor

Thank you all for the prayers and love that have come our way. We never imagined we'd have to call on our community of family and friends so soon and certainly did not want it to be in this way.

Stay tuned here for postings as things progress. We are not in a good place, but given the situation, it's as good as it could be.