Monday, June 29, 2009

An angel on our shoulders (34 days)

We have a wealth of good news to share! Bryce's progress during the past two days has been near miraculous. The most exciting change for us, but perhaps the least important medically, is that he loves his kangaroo care (skin-to-skin snuggling). Daddy got to hold him for an hour on Sunday, and Mommy cuddled him for 90 minutes today. The staff is encouraging us to make time to hold him for at least an hour each day, and we're happy to oblige.

Also, he is finally off the blood pressure medication. They turned it off at 4:30pm on Saturday, and he has been stable without it ever since. Of course, this means that he can start eating again! The bi-hourly, 1 ml mini-feedings started Saturday evening, and they're going to continue those for five days before they consider an increase. I don't mean to embarrass my son, but given our past experience, we were thrilled that he has "good bowel sounds" and has been "stooling" regularly. He's been growing steadily, too: up to 980 g (~2.2 lbs) today!

Bryce has been doing great on the mechanical ventilator. They've reduced his support several times over the past two days, and the nurse practitioners said that he is currently near "extubatable" levels. That means they might remove the tube and allow him to try breathing on his own! It's probably a bit premature to hope he'll be off the vent for good, but it sure would be nice to hear the cries he's working so hard on (see pic).

They checked his kidneys via ultrasound this morning, and the urologist said they are structurally sound. His only complaint was that they are "small"; I'm guessing he didn't realize the magnitude of his patient. :)

All said, we couldn't ask for anything more from our micropreemie marvel. Personally, I think he must have a certain micropreemie angel watching over him. There's still a long road ahead, but we'll hope and pray for 65 more days like this.

Saturday, June 27, 2009

A mother's dream come true (32 days)

There is another reason why we were excited about the move to the standard ventilator, but Christie didn't want me to share it until she knew her hopes wouldn't be dashed. The pictures say it all. :)





Friday, June 26, 2009

One Month!

Happy one-month birthday, Bryce! Well, sort of. Christie and I have been eagerly awaiting this day for weeks, because we knew that 98% of micro-preemies who survive the first month also survive the first two years. However, we now find ourselves fixated on that 2%: every minor hiccup Bryce experiences is magnified a hundredfold.

Thankfully, we haven't experienced any gut-wrenching drops on the preemie roller coaster during the past two days. In fact, Bryce has been doing great! Yesterday, he was breathing room air (no extra oxygen) for most of the day. Today, they lowered the settings on his high-frequency ventilator, and he handled it really well, so they decided to move him to a standard ventilator late this afternoon! Christie and I were thrilled; Bryce seems much calmer when he's on the regular vent. He's still trying to kick the dopamine (blood pressure meds), but I'm hoping the ventilator switch might lead to a positive change in this area as well. Go, twinkie!

Wednesday, June 24, 2009

No longer a neonate (29 days)

Bryce is 29 days old today! By definition, the term "neonate" is used to describe a baby during the first four weeks of his or her life, so our little boy is now officially a full-blown infant. Unfortunately, they won't let us bring him home from the neonatal intensive care unit quite yet. :)

We're pleased to report that Bryce has been steadily improving the past two days. He has been alternating between very low doses of medication and no medication, so we hope he's right on the cusp of resuming feedings. Despite the fact that he's only been receiving IV nutrition, Bryce has been slowly growing: he's up to 2 pounds today! They also finally got a new arterial line in place, and he looks healthy.

Under the circumstances, it's hard to visit the NICU. The sorrow and empathy is palpable; it's clear that everyone was shaken by Chloe's loss. Chaplain Chuck, who has spent time with us regularly since Christie's hospital admittance, told us that while they do have to deal with loss, it rarely happens so abruptly. I find no solace in Chloe's uniqueness in this respect, but it is comforting to know that she was more than just "another patient" to the team.

Anytime you invite great joy into your life, you also risk great sorrow. Chloe's passing has been indescribably painful, but Christie and I are both immensely grateful for the 26 days our daughter spent with us. Thank you to everyone who has remembered Chloe through their kind words, actions and donations to the March of Dimes.

Monday, June 22, 2009

And then there was one (27 days)

I'm sure many of you are wondering what happened. Preliminary test results indicate that Chloe had a blood infection. They were treating her with antibiotics, and she seemed to be doing much better late Saturday night. By Sunday morning, her coloring had improved, and she was breathing room air. Though an infection is always serious for such a small baby, no one expected what was to come. At 10AM on Sunday morning, the infection caused Chloe's bowel to perforate. Though the entire team reacted swiftly and heroically, the shock was simply too much for her.

Little Bryce fights on. His blood pressure was a little better today, and they're going to give him two rounds of steroids to help wean him off the dopamine. He's been having a little bit of trouble with the lines that they use to draw blood: his old one was wearing out, and they couldn't get a new line threaded through his tiny veins. He looked a little stressed, but the doctor came by to reassure us that he is very stable and not at all sick.

We will be having a small ceremony tomorrow afternoon for Chloe. I know that our little girl touched many lives during her sojourn here on Earth, but we decided to limit the service to immediate family. There is a very beautiful, very intimate chapel at our church, but it can only accommodate a couple dozen people, and to be honest, we're not ready for a public reception yet. We're planning to celebrate both of the twins' lives when Bryce comes home in September. Please keep Chloe in your thoughts and prayers tomorrow at 4:30.

Sunday, June 21, 2009

An ocean of tears (26 days)

Our little angel, Chloe Kathleen, left us at 11AM this morning. She was a fighter to the very end. Even after they told us there was nothing more they could do, Chloe surprised everyone by opening her eyes for 15 precious minutes with Mom and Dad. She was too beautiful for this world, and we know she's at peace now.

There are no words which adequately describe how we feel. I know many of you are also grieving, but we ask that you respect our privacy during this difficult time. Thanks for all your love and support.

Saturday, June 20, 2009

And it all crashes down (25 days)

"Fool me once, shame on you. Fool me twice, shame on me."

After all that we've been through in the past few weeks, you'd think that we'd have learned by now that things can change dramatically in a matter of minutes. Nevertheless, we were completely unprepared to walk into a flurry of activity around Chloe's isolette this afternoon.

The doctor hurried over, asked Christie to sit down and informed us that Chloe was "very sick." Her stomach had swollen up rather suddenly, she was aspirating (spitting up via her feeding tube) greenish/brown milk and the oxygen levels in her blood were critically low, despite the fact that she was breathing pure oxygen. I got a quick glimpse of our baby girl before one of the doctors politely but firmly asked us to back off, and the color of her skin made my heart sink.

Over the next hour, the team worked feverishly to bring her back to a "stable" state. Fortunately, her abdominal x-ray did not look as bad as they had feared, and one of the nurses said that they may have "caught it just in time." She's receiving constant attention, and they've already started running a battery of tests to determine where the infection is. Meanwhile, they're treating her with general antibiotics and a slew of other medications.

Bryce seems to be oblivious to all the excitement, but he's still having trouble with his blood pressure, so they're going to start him on antibiotics as well. With any luck, they'll both start improving when the drugs kick in later this evening. We'll be here, hoping for the best Father's Day gift ever: a speedy recovery for both of them.

Friday, June 19, 2009

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.

Wednesday, June 17, 2009

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.

Monday, June 15, 2009

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! :)

Friday, June 12, 2009

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. :)


video

Thursday, June 11, 2009

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! :)

Wednesday, June 10, 2009

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!

Tuesday, June 9, 2009

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.

video

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



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




Chloe: Our tummy-sleeper

Monday, June 8, 2009

13 days

I've thought about it all afternoon, and I can think of only one logical explanation: the person who chose the medical terminology used to describe intraventricular hemorrhage (IVH) is a bit of a sadist. Poor Christie was alone at the hospital this afternoon when the medical team came in for their daily rounds. Chloe and Bryce had each received another head ultrasound this morning, and the doctors were discussing the results. You can imagine Christie's utter dismay when she overheard Bryce's brain bleed described as "evolving." Fortunately, one of the nurses noticed that Christie was about to hit the NICU floor for the second time, and quickly explained that, in this context, the term "evolving" is used to identify a bleed that is dissipating!

Bryce's IVH improvement was the cornerstone of a day filled with positive news. Bryce has remained stable in spite of the fact that he's been off the meds for the past couple days, so they've restarted his bi-hourly feedings. This afternoon, Christie got to "feed" Bryce for the first time: 1ml of milk delivered by pipet into a tube that runs directly into his stomach. Not exactly how most mothers envision their first bonding experience with baby, but under the circumstances, we'll take it. :)

Chloe is also doing great. She's still on several medications, so she isn't ready for milk yet, but that's not surprising since she had major surgery a few days ago. Her ultrasound showed no additional bleeding into her ventricles, which is what we were hoping for. Also, her chest x-ray showed that she has much less fluid in her lungs, which we believe is another indication that her surgery was a success.

As we close out another week, I'd like to once again thank everyone for their thoughts and prayers. Bryce and Chloe's first two weeks haven't exactly been smooth sailing, but it definitely could have been a lot worse, and I like to think that the positive energy they've received from all of you had something to do with that. So, thanks! :)

Sunday, June 7, 2009

12 days

Quiet. Stable. Calm. Relaxed. These words have been used more often than not when the nurses describe the twins' condition during the past two days. Though I love to express myself through writing, nothing would make me happier than if Chloe and Bryce continue to be such unremarkable babies that I have nothing interesting to say.

In other news, our kids are huge! Based on a comment that one of the doctors made, Christie and I mistakenly believed that the twins wouldn't gain much weight during their first few weeks of life. While talking to Chloe's nurse, I was shocked to learn that her weight has increased to 825g -- 1 lb., 13 oz! Bryce's weight is up to 770g, and they've both been gaining 10-20g per day. We thought they looked more robust, but figured we were just getting used to their diminutive features. We were thrilled to learn how much they've grown!

Friday, June 5, 2009

Success! (10 days)

When we arrived early this morning, the twins were both stable and resting peacefully. I'm not sure she knew it, but Chloe could not have picked a better day to turn the corner. The doctor strolled in a few minutes before the surgery, and nonchalantly explained that he was going to slice open our daughter's chest between the third and fourth rib, push her lung out of the way, and place a tiny titanium clip on her heart. I struggled to keep my trepidation in check as the chief resident handed me a consent form and a pen, and then ushered us out of the room.

45 minutes later, the surgeon dropped by the family lounge to personally deliver the best news we've had all week. The surgery was a success, and Chloe was already showing a positive response - her blood pressure and O2 saturation improved almost immediately! 10 minutes later, Christie and I were crowded around Chloe's bedside, comforted by the gentle rise and fall of her chest as she slept.

On that happy note, I'll close today's post with a few pictures of our little ones. I've also added a video of the pre-surgery excitement to give you a little taste of NICU life.



Bryce: doing the tanning thing



Chloe: pre-surgery



Chloe: post-surgery

video

Thursday, June 4, 2009

9 days

Our daughter will be having heart surgery tomorrow.

Those words are enough to strike fear into the most stoic of parents (which we certainly are not). Chloe's PDA still has not closed, and due to concerns regarding the fluid in her lungs and potential long-term lung problems, her medical team has decided to use surgical ligation to close the opening. Fortunately, this is a common procedure in micro-preemies, and the success rate is very high (~98%). The doctors have warned us that the 24 hours following surgery will be a difficult time for Chloe, but we're hopeful that it will significantly improve her condition in the long run. If you'd like to know more about PDA, click here.

The kiddos have been seriously misbehaving. Bryce and Chloe's nurses have been tweaking knobs and adjusting lines all night and day, and the doctor pronounced the end of the "honeymoon period" this morning. Bryce was jealous of his sister's high-tech machinery, so they moved him to the high-frequency ventilator as well. I guess they're already overacheivers: they had a longer than normal honeymoon period, and now they're in a hurry to get their weekly bad days out of the way. :)

Wednesday, June 3, 2009

8 days

Chloe and Bryce are separated by five feet of air and thick plastic isolettes, but apparently they still know that they're twins. Their blood pressure started dropping in unison last night, and they've had a very busy day in the NICU. The doc says this is typical behavior at this age, although they ran a series of tests on both babies to check for the bane of all preemies: infection.

Both of the twins are back on the blood pressure medication, and they switched Chloe to a high-frequency oscillating ventilator to give her lungs a break. Unfortunately, their forward progress has been effectively "paused" until their condition improves: they stopped Bryce's feedings, and we won't get to hold either of them any time soon.

Another day in the life of a micro-preemie parent! After an hour spent in the NICU listening to alarms chirping incessantly, we needed a little encouragement, so I added a few new success stories to the sidebar. :)

Tuesday, June 2, 2009

One Week

Bryce and Chloe are one week old today! Looking back on the past week, it seems our wee ones have fared pretty well. I'd argue that they've had five good days and two bad days, when we expected just the opposite.

This newfound optimism is due in part to another bout of emotional whiplash Christie and I suffered this afternoon. Dr. Gale, who is one of the neonatologists (the "head" NICU doctors), said that Chloe and Bryce are doing remarkably well, and that they've had relatively few problems compared to your average 24-weeker. She also said that while the grade 2 IVHs are a cause for concern, most resolve on their own with minimal or no complications. You'll have to pardon us for feeling like the sky was falling after learning that our children have holes in their hearts, fluid in their lungs, and bleeding in their brains. ;)

It was a "slow" day in the NICU for the Sonnek twins. Bryce is doing great, and will get his first taste of real food sometime this evening. Chloe still has fluid in her lungs, and the current hypothesis is that the extra blood from Chloe's PDA is causing the fluid accumulation. By giving Chloe a second round of medication to close the PDA, the doctors are hoping to resolve both problems.

If you haven't had your fill of micro-preemie drama, stick with us for "Chloe and Bryce: Week 2." It'll be an exciting ride: we guarantee it. To celebrate their one week birthday, here's a little treat for those of you who prefer stories with pictures. Hopefully you can match baby to picture based on their accoutrements. :)



Monday, June 1, 2009

6 days

I'm sorry to say that our luck has not improved. Christie and I were devastated to learn that both Chloe and Bryce suffered a grade 2 intraventricular hemorrhage (IVH), which means that both twins have some blood in their brain ventricles. Given that IVH occurs in 20-50% of extremely premature babies, we feared that one of the twins might have a bleed, but we were not prepared to learn that both twins experienced a "moderate" bleed.

Ventricles are pockets in the brain that store fluid which is necessary to maintain brain health. Bryce's bleed is restricted to the left ventricle, but Chloe has bleeding on both sides. A little blood within the ventricles themselves is not harmful, but it can lead to two serious complications. If the blood clots, it can prevent the normal exchange of fluid, which can cause the ventricle to swell and damage surrounding brain tissue. Clotting may also cause some areas of the brain to get less fluid than they need, resulting in brain damage. Clearly, this means that the twins are at significantly higher risk of disability. All hope is not lost, however; the blood often dissolves on its own, causing no permanent damage. If you'd like to learn more about IVH, I highly recommend the following site: AboutKidsHealth.

Unfortunately, this means we've been cast back into the emotional purgatory of "wait and see". They will monitor the twins closely to watch for signs of swelling, and will re-evaluate with another ultrasound in a week. In a month, they'll perform another test to determine if any areas of the brain suffered damage due to fluid deficiency. The hemorrhages almost certainly happened in the first 48 hours after birth; it won't get any worse (i.e., we have no fear of being upgraded to the much more serious category 3 or 4), but it can take several months for the blood to dissolve.

There were a few glimmers of sunlight peeking through today's stormclouds. Bryce has gained two ounces of "quality weight" (i.e., not water retention), and this morning's echocardiogram showed that his ductus arteriosus has closed. As a consequence, they're going to start feeding him tiny amounts of mama's milk to stimulate development of the digestive system. If he tolerates it, they will gradually start weaning him off the IV nutrition and increasing his daily milk allocation. Chloe's ductus arteriosus has also responded to the medication, but there is still a small opening; the current plan is more waiting in the hope that it will close on its own.

UPDATE: Upon reflection, I realized the tone of this post was somewhat negative, and I didn't want to give the wrong impression. We always knew this battle wouldn't be won in the first seven days; there will be many peaks and valleys along the way. This is definitely one of those valleys, but Chloe and Bryce are fighters; as long as they keep drawing breaths into those frail little bodies, we'll be behind them all the way.