That girl can eat! (24 days)

"Little" Chloe is really packing on the weight -- this morning, she tipped the scales at 2 lb., 1 oz! Her feedings have been going so well that they moved her to 4 ml per feeding yesterday, and today they moved her to 5 ml (about a teaspoon). That's 2 oz. of milk per day, which is pretty significant if you consider the fact that she only weighs 33 oz! Big brother Bryce is falling behind (1 lb., 14 oz.), but it's pretty hard to gain weight when you're not eating! He's still on dopamine for his low blood pressure, and they won't feed him as long as he needs the meds. The good news is that all of his infection cultures have been negative so far, and he doesn't seem like he's sick.


Chloe's foot looks much better, but the tip of her fourth toe is still "dusky" (i.e., black). We're trying to remain optimistic, though it's not impossible that the "10 fingers, 10 toes" cliche won't apply to our daughter. Oh well, toes are overrated... right?! The good news is that they removed the dressing from her PDA surgery, and it left a pretty cool looking scar (see pic below), so hopefully that will distract attention away from the toe when she's out in her bikini.


If you didn't guess from the limited number of posts, the past five days have been relatively quiet. This week's neonatologist, Dr. Georgieff, actually dropped by this afternoon to thank the twins for their good behavior. With any luck, they'll continue to rest and grow for another week. Once their lungs are a little more mature, the next step will be to get them off of the ventilators and into Mama's arms.

The good, the bad and the ugly (22 days)

The Good: The current plan is to take it easy for a few days and let the twins grow. Thus far, Bryce and Chloe have been happy to oblige: Bryce is up to 1 lb., 13 oz. and Chloe is at 1 lb., 14oz. Our little girl is working especially hard: she did well with her 1 ml milk feedings on Monday, so they moved her to 2 ml yesterday and then to 3 ml today -- almost an ounce of milk per day! They're both still on the jet ventilators, but their chest x-rays have been looking much better, which hopefully indicates that their lungs are getting stronger. Also, each of the twins can open both of their eyes when they're awake, which is fun for Mom and Dad even if they can't see anything yet.


The Bad: Bryce is still struggling to maintain a healthy blood pressure, so he hasn't been able to eat during the past three days. Neither the steroids they've been giving him nor the restoration of his pain medication have helped, so now the doctors are beginning to wonder if he has an infection. They started several tests, but since he isn't exhibiting any other symptoms, they're not too concerned yet.


The Ugly: An artery in Chloe's right ankle collapsed late this morning, and her foot wasn't getting enough blood. The nurses reacted quickly and were able to restore blood flow, but her entire foot turned black and blue. If you've ever tried to stand on a foot that has fallen asleep, then you can imagine how poor Chloe feels right now. :( It looked better this afternoon, but her fourth and fifth toes were still discolored. Chloe's nurses are watching it closely, and the nurse practitioner said permanent damage isn't likely, so we're hoping they'll be a nice rosy pink in the morning.

20 days

"Round and round and round we go, where we'll stop, no one knows."

If you're busy, that pretty much sums up the past couple days. I'd say Friday was a two steps forward kind of day, whereas late-Saturday and Sunday were each one step back, which leaves us in a place that looks oddly familiar.

Bryce has both of his eyes open now, and he was eating like a champ. The steroids they were using to accelerate lung development do not appear to have had a significant impact on him, although they have been slowly reducing his ventilator settings. On Friday, they decided to take him off his Fentanyl drip, which meant that he would no longer be receiving a steady stream of pain medication (Fentanyl is like morphine, but more potent). Unfortunately, by Saturday night, Bryce was very "twitchy", and his agitation was causing his blood pressure to drop. To keep his blood pressure up, they had to put him on medication, which meant that the feedings had to stop. On Sunday, they decided that he was going through Fentanyl withdrawal, so they put him back on the drip this afternoon. I had no idea that I had to have the "drug talk" with my kids this early.

Chloe, on the other hand, seems to have improved significantly on the steroids. They actually extubated (removed the breathing tube from) her on Saturday afternoon, and she was breathing on her own. However, like her brother on day 1, she got tired after a few hours, so they put her on a low-power ventilator. Unfortunately, she relapsed a bit when they stopped the steroids on Sunday, so now she's back to the high-frequency ventilator, albeit at lower settings than before. With regard to her feedings, Chloe's a bit behind her big brother. She was struggling to digest the milk, so they decided to take a break for the weekend, and are planning to try again tonight.

I've saved the best news for last. They scanned both of the twins' brains again this morning, and while Chloe's ventricle bleed was unchanged (that's a good thing), Bryce's IVH has improved so much that they're not going to bother with checking it again until just before discharge! Go, twinkies! :)

18 days

Our little princess was the star of the day. The medical team is starting to get more aggressive about weaning the twins off ventilator support, since long-term reliance on the vent can stunt lung growth and cause permanent lung damage. As a consequence, Chloe and Bryce have started receiving steroids to help further the development of their lungs. Chloe has responded very well to the steroids: they've significantly reduced her ventilator support, and she needs very little oxygen supplementation. They even talked about extubating (removing the breathing tube from her throat) her during rounds today, which means she might be breathing on her own soon! Chloe has also joined her big brother on the bi-hourly milk feedings, and she even opened her right eye yesterday!

Bryce, unfortunately, is living up to the "wimpy white boys" cliche. Apparently, premature Caucasian boys are known for having lung problems, and Bryce is stubbornly refusing to demonstrate that he can live without his fancy ventilator. He is, however, doing extremely well with his feedings, so they've doubled his daily milk allocation. They also performed another echocardiogram to check his heart, and his PDA is still closed, so it's very unlikely that he'll need the surgery that Chloe had.

It seems that someone heard yesterday's plea, because the nurses have suddenly allowed us to be a lot more involved in Bryce's care. I took his temperature, changed his diaper and gave him small drops of milk on his tongue as a "treat"; Christie and I even got to "hold" him by cupping his head and legs in our hands for nearly 45 minutes! It was an amazing experience: his vitals improved significantly while we were holding him, and he seemed a lot calmer.

All in all, it was another good day! It feels like we've had a lot more than we were promised, but I'm not going to complain. :)

Not Quite a Father

I am a pseudo-father. Chloe and Bryce are 16 days old today (and doing fantastic, by the way). In the past two weeks, I have not gagged while changing a smelly diaper. I have not been awakened in the middle of the night by a hungry baby. I have not paced around the house while rocking an inconsolable child. Heck, I don't even have a crib for one of the twins. And yet, I am a "father" of three.

Christie and I have relinquished our role as parents to a little plastic box. There is no doubt in my mind that the twins are my offspring, but I don't feel like they are my children. For the next three months, we will wait, watch and worry as Bryce and Chloe struggle to overcome more medical challenges than most people will face in a lifetime. Even if (when!) we beat the odds and bring home two "healthy" babies, they will always be at higher risk for countless medical problems. Though we will love and cherish them no matter what, as a parent, it is hard to know that your children are coming into the world at a disadvantage. It is especially hard to know that, for the time being, there is virtually nothing that we can do to support them in their time of need.

During the past month, we have often found ourselves mourning the loss of the normal pregnancy, and the feelings of unconditional joy and closure typically associated with the birth of a child. I'd be lying if I said part of this wasn't selfish longing for the "simple" task of caring for healthy, full-term babies. However, the lion's share of our grief is grounded in our inability to fulfill the role that nature intended. I want to change those poopy diapers. I want to feed my hungry children. I want to help them feel happy and safe. I want to be their real father.

... and I think I will be. The subject of this post may lead you to believe that I'm angry or depressed. Nothing could be further from the truth. I'm thrilled and immensely grateful that the twins are doing well. So well, in fact, that we no longer feel that the next crisis is both certain and imminent. As we begin the second month of 'A Twin Story', Christie and I are optimistic that we will soon be able to show Chloe and Bryce how much they mean to us. However, since I didn't have any interesting medical news or cute pictures to share, I wanted to take a minute to reflect on what it feels like to have two children in the NICU. Although this has been one of the most difficult experiences of our lives, it has given both of us a new perspective on life and our role as parents. A few months or years from now, I hope that I'll be able to look back on this post, when the kids are being difficult or demanding, to remind myself how much I cherish the opportunity to be their father. Furthermore, I hope that all the parents out there who've read this far will take a moment to appreciate the profound gift they've been given: there really is nothing that compares.

Thanks for reading! :)

Baby Blues (15 days)

The news of the day is best delivered via picture: Bryce opened his eyes! Technically, he only got the right one open, but it looks like the left won't be far behind. Of course, it had to happen on the one day we forgot our camera. The nursing staff had a loaner camera available, but it has seen better days. I managed to get a few grainy pics with his eye half open (they are really blue, which is common in preemies); we'll get some better pics tomorrow!

Two weeks

If you needed any further proof of the strange world we've been thrust into, consider the following: in the two hours that Christie and I spent with the twins this afternoon, we observed a couple partially-collapsed lungs, a potential seizure (false alarm), some mystery blood around Bryce's mouth, plus regular bouts with the usual suspects -- hypoxemia, hyperoxemia, hypotension and hypertension. And yet, Christie and I were all smiles this afternoon; for Bryce and Chloe, this was another very good day.

Bryce has been tolerating (i.e., digesting) his feedings, which is a very good sign. Also, the doctor stopped by again to emphasize how amazed she was that his IVH had dissolved so quickly. Just before we left, they had the top off Bryce's isolette so they could adjust one of his lines: Christie and I both got to cradle his head, and Mama even gave him his first kiss! Chloe has remained stable, and they've been slowly weaning her off the medication, so we're hoping she might start feedings toward the end of the week.

Lest you worry that there are no laughs in the NICU, check out this video of Bryce struggling mightily to open his eyes. :) I attached a couple pics of our two-week-olds as well.



Bryce: "I want to see, Mom!!"



Bryce: "I wish I could wipe off the kiss Mama just gave me"




Chloe: Our tummy-sleeper