What A Week!

It's hard to believe it's been less than a week since our last post. Looking back, it's actually been an incredible week!

Starting with the first big event...late last week, Cailin graduated to being able to wear clothes. While this may not seem like a lot, in the life of a young preemie, this is big news. Being able to wear clothes is good from a clinical sense because it means she is finally starting to maintain her own body temp, rather than relying on the isolette to regulate it for her. And for me it's good news because I finally get to dress her in adorable pink "onesies" (Preemie size and still too big - but baby steps, right). She just looks so grown up now wearing clothes. And while she still has electrodes stuck to her with too many wires, they're nicely covered up by her clothes. A definite plus for mom and dad. Sometimes I fool myself into thinking they're gone.

More great news is that Caili is now 3 pounds 9.5 ounces! She is on the move. It's amazing; if you look at her growth plotted over the last three weeks it's just a steady slope up. In fact, with all this weight gain and because she is able to better maintain her own temp, we are told she may only be a week or so away from graduating to a crib. Of course, it's a crib that lives at the NICU (not her newly painted pink bedroom) but a crib nonetheless. Once she is transitioned to the crib, we can fill it with toys, stuffed animals and a mobile to keep her entertained. But, don't try this at home (frowned upon due to the risk of SIDS), it's only possible because she is on a heart rate monitor. Huh, maybe there is one advantage to being in the hospital...

And, as if this isn't enough great news, probably the biggest news is yet to come! This Sunday, we had the same nurse that we had a few Sundays ago. The nurse that wanted to "see what Caili could do with a bottle." If you remember, that showed Caili had a good start but that she was missing one of the three key components. She was able to suck and swallow a few times but she didn't seem to know what to do when it came to the breathing part. It actually appeared to us that she held her breath. But, she did show she was interested. So, this Sunday that wonderful nurse (Nancy) decided she would give it another try. And much to everyone's surprise, Caili put all three steps together. In fact, she drank 5 ccs. Now, before I go on bragging, there are approximately 30 ccs in one ounce. So, we're not talking about a lot of milk. But, to us it was a big step. And more importantly, she showed us that she COULD put it all together. She just needs more practice and more importantly, more strength. It's hard work for those little (and still sick) lungs.

The docs have told us that we shouldn't try this more than two times a day for now. So, since Sunday we have been doing just that. However, we’ve been alternating between nursing and bottle feeding. Both are going very well. In fact, Caili drank 12 ccs today.

There isn't an hour that goes by without reflection on how lucky we are. It's crazy really, I wouldn't have thought that we could feel "lucky" in this situation. But we do. Caili has come so far, and, as we have written about in several posts, there are too many people suffering around us. While I am certain we took healthy babies for granted a year ago, both Tim and I now have such an incredible appreciation for new life and feel blessed that Cailin has been so fortunate. She has such a sense of determination about her, and I thank her each day for having that will to survive.

So, all this good news. Are you now wondering when she is coming home? We certainly are. But, I'm afraid it's still a ways away. I have been subtly hinting (for those of you who know me, you know that's not too subtly) to the doctors and nurses that we would love to have her home for Christmas. Or, based on their reaction...New Year's. But, only time will tell. What we do know for sure is that Cailin needs to 1) prove she can be in a crib since we don't have an isolette at home 2) come down on her "flow" or level of pressure and percent of O2 that she gets from her nasal cannula 3) be more consistent with her oxygen saturation levels 4) have fewer or no episodes of apnea (common for a preemie) 5) get to 5 pounds and 6) be able to eat her entire feed through nursing or a bottle (she gets 41 ccs 6 times a day right now).

Sounds like a lot and it is. But, we can wait!

Thank you all again for your continued support and prayers. And for reading this incredibly long post! I promise I'll post more pictures soon. You won't believe how big she's gotten :)

A Very Thankful Thanksgiving

Caili is back off the vent and doing great! Her surgery apparently went very well, and the surgeon confirmed there should be no long-term complications resulting from the ROP, or from the laser surgery that corrected it, particularly since they caught it so early. She was on the vent for nearly a full day afterward--making Lauren and me anxious beyond words--but they extubated her at 9 AM Thanksgiving morning. I can't describe the joy we felt walking into her room and seeing the ventilator sitting there beside her isolette, confirming with its lack of lights and sounds that Caili was back on the cannula. Our best Thanksgiving morning ever.

It was torture to see her back on the vent on Wednesday, and from the moment they intubated her that morning, she made it clear that she hated it just as much as we did, if not more. Prior to being put under, she was occasionally gagging, and seemingly trying to spit the tube out of her mouth. It was a sad sight to see. Her nurse said she immediately began fighting the tube again when the sedatives given to her for the surgery finally wore off, which took far longer than we were expecting. Had it not been so well taped, I suspect she would have pulled the tube out herself in the middle of the night as she did last time.

Wednesday was a stark reminder of how very lucky we are, and of exactly what to we have to be Thankful for. As we worried about Caili's relatively minor surgery and how quickly she would be able to come off the vent, another family that Lauren had recently met was saying goodbye to their beloved son Jedd, an adorable baby that came after a normal full-term pregnancy, but experienced delivery complications from which he could not recover. Jedd's family was truly inspirational in their reflections on their situation; he was here for far too short a time, but they related that he had made an impact on more people than they could have imagined, in ways that no other baby could. Count us among those he touched. I didn't have the good fortune to meet baby Jedd, yet I will never forget him or his incredibly brave parents. Good does come out of tragic events, and each day we have with our loved ones is a day to embrace, and be thankful for.

Happy Thanksgiving to you all.

Laser Eye Surgery

We learned today that Caili has retinopathy of prematurity (ROP), a common condition in premature babies that "occurs when abnormal blood vessels grow and spread throughout the retina." In many cases it resolves itself, but in more severe cases it can cause blindness if left untreated--as in the case of Stevie Wonder. Caili's case is bad enough that it won't resolve itself, but fortunately the condition is now treated with laser eye surgery, and we're hopeful that it won't be a significant issue long term.

It's critical to address it quickly, so Caili is having the surgery tomorrow, her third surgery to date (the first two were the two times they inserted a central line). The surgery itself is apparently a fairly minor procedure, but the biggest issue in our minds is the fact that Caili has to go back on the vent while they're operating. Doing so will allow them to maintain an open airway and keep her breathing as she'll be sedated. The doctors are very hopeful they'll be able to take her back off soon after the procedure, but obviously we're anxious about it, and not at all excited to have her dealing with the intubation tube and the pounding force of the vent again.

We don't yet know what time the surgery will take place, but we'd appreciate it if you'd keep her in your thoughts tomorrow (Wednesday). We'll let you know how she's doing tomorrow night or on Thanksgiving at the latest.

Speaking of which, Happy Thanksgiving to you all! Travel safe, eat lots, and enjoy!

Progress; 3 Pounds, and First Try with a Bottle

A quick update to say Caili is doing really well. She's starting to add weight more consistently, and now weighs a whopping 3 pounds!

Lauren and I gave her a bath tonight, which was amazing. She actually seems to enjoy her baths, and it's by far the best way to interact with her, as she's incredibly alert and active. It was a bit scary, and it's not so easy because we actually put the basin in her isolette. It's tight working quarters, but that helps her to stay nice and warm.

She's been sucking on a pacifier--a tiny little one--for the last several weeks. The nurses gave us a bigger one and have been saying she should graduate to it soon, and that her next big milestone would be to suck, swallow and breath. That coordinated effort isn't so easy for tiny little girl with injured lungs.

Well, tonight the nurse helped us try the bigger pacifier, and Caili loved it. So that inspired the nurse to take the next step, and give Caili a bottle! It was incredibly frightening, but yet very exciting. And adorable. Caili was a bit shocked when she first got a mouth full of the milk, and she wasn't sure quite what to do. So she held her breath. And then spit it out. And then the monitors went off because her oxygen got low. But she calmed back down and the nurse tried again, and she seemed to do it. Just a couple of swallows, but still, it was great! We're still a long way from her being able to truly eat--her oxygen flow needs to come down substantially--but this was a great step in that direction.

Obviously we continue to be thrilled and very, very thankful about how well she's doing. Our only minor disappointment at the moment is that her feeding schedule has all but eliminated our ability to hold her. They run her feeds into her feeding tube via a pump over three hours, and then give her one hour off before they start the next 3 hour feed. They don't want us to hold her when she's eating, and since they moved her to this schedule she hasn't tolerated being held right after she eats. We're hoping they'll soon switch her to 2 hour feeds with 2 hours rest, as the second hour of rest would be perfect holding time, but right now sleeping and growing are the main priorities anyway. As Lauren points out, normally she'd still have 6 more weeks gestation to go, and if she were still gestating we'd just be feeling her kicks on Lauren's belly.

As always, thank you all for your thoughts and prayers!

A Few Not So Recent Pictures (Taken 11/4)

In our last post we said we would post bath pictures. But, after reviewing them this evening, we realized that most of them aren't "G" rated and none of them are particularly flattering of little Caili. Don't get me wrong, they're incredibly cute to us. But, Cailin may resent us someday if she knew they were posted on the Internet. So, to keep our word, here is just one picture from her bath last Sunday:

This picture was taken last Sunday (11/4) right after the bath. Tim got to hold her while they changed her bedding. She is nice and relaxed now after her tubby:
But, she couldn't fall asleep because our camera's auto-focus light kept shining in her eyes from all the pictures we were taking...hence the hand on the forehead! I'll tell you, Caili is doing a great job of showing how she feels at such a young age. I came into the NICU the other day to find the nurses laughing at her bedside. When I asked why they were laughing, they showed me...each time they lifted her isolette cover she would put her arm in front of her eyes to block the light. Not something the nurses typically see at such a young age. Do we have our work cut out for us or what???

This picture was taken right after we had to put her back into her isolette. We got her all comfy and cozy using her fancy "Zakys". A Zaky is a bean filled hand that you can use to help position, prop or comfort a preemie. Caili's Aunt Pam saw these in the Preemie magazine they keep in the NICU Family Lounge and bought them for Caili when she was only a week old. Caili loves them! And so do we. Please suggest these to anyone you know who has a preemie. If you need more info, just drop us a note. They are a Godsend. As you can see here (sorry, not the best picture) Caili has one around her head so she feels confined and she is "spooning" the other one. The fingers even help to hold her pacifier in place...an added bonus!

Hope you enjoyed the bath and post bath shots! We'll try to get some more recent onese up soon.

An Uneventful Week, Thankfully

Caili had a relatively uneventful week, which all things considered is very good. While she's up to 2 pounds 8 ounces, some of that is excess fluid, and she's still not gaining enough weight on a regular basis. However, she is gaining enough weight that the doctors aren't as concerned as they had been about her weight gain. She's a very active little girl--scooching around her isolette like crazy, which of course burns lots of calories. They've continued to adjust the concoction that they feed her, and today upped the volume, so hopefully she'll soon start packing on the pounds like they say she should.

They tried to wean her oxygen support last Sunday night by lowering her "flow," but her lungs weren't ready. She made a truly valiant effort, lasting until last Tuesday, which was the worst day she's had in weeks. However, given some of the days she's had, it wasn't a bad day at all. So, they moved her flow back up, made some other changes, and she quickly improved. She struggled again yesterday--likely due to the aforementioned excess fluid, and they actually had to increase her flow, but it's still worlds better than going back to the vent.


The highlights of last week were our first experiences with bath time. The nurses had been bathing her in the middle of the night when the NICU is closed to parents, but last Sunday Lauren and I got to help (well, watch), which was fantastic. Lauren and her mother got to participate in another bath last Wednesday while I was at work, feeling jealous. She was an angel for both baths. We have some adorable pictures from the first bath--we'll try to get a couple up on the blog later this week.

I got to hold Caili for the first time in quite a while on Saturday and then again on Sunday night. It had been too long. When she's in my arms my stress and worry just melt away--hopefully the same is true for Caili. Lauren's been holding her for brief stints on most weekdays. We've agreed that she gets weekday holds and I get weekends--at least until they remove the one hold per day restriction.


Holding her came at the perfect time for me, as Lauren and I have had a tough few days. The NICU continues to be full of surprises for it's residents and their families, and the surprises are rarely positive. When Caili was struggling, we noticed little of what surrounded us, focusing intently on our own troubles. Now that she's doing relatively well, we're finding it difficult to bask in the joy of her progress in light of the challenges faced by her neighbors in the NICU.


The tragedy--or even the near tragedy that the NICU heaps upon families is at times too much to bear even just in observation. The emotions of watching another family deal with the severe illness of a child while yours lies precariously close to the line that separates a good day from a bad one are extreme. Lauren and I are frightened that even a small turn for the worse could put us in the same position yet relieved that we're not in that position at the moment. And then there's the feeling of guilt brought on by the fact that our angel is having a good day while others are not. You can't feel celebratory when your neighbors are having a day worse than you could have imagined just 8 short weeks ago.

The day when we get to bring her home can't come soon enough.

9 Days on Nasal Cannula & 1 Kilogram!

Caili is now into her 9th day on nasal cannula:

And, we're thrilled to report that she's still doing very, very well!

The only issue recently has been her lack of weight gain, but when they weighed her last night she had gained 32 grams, passing the 1 kilogram milestone! She's now 2 pounds, 4 ounces. The doctors were confident they could find the key to her weight gain, and hopefully she'll continue gaining and prove that they have.

Most of what they've been doing is adding fortifiers and supplements to her breast milk, but they also took the precaution of reducing our holding privileges to once per day, roughly 15 minutes at a time. While I was certainly disappointed, Lauren took the news particularly hard.

She had been holding Caili a couple of times a day, an hour or more each time, and her daily holds had become something that she enjoyed immensely--an incredible bonding time between mother and daughter that was anxiously awaited from one hold to the next. Lauren understandably feels truly deprived to now have that bonding so severely limited, although we both obviously want only what is best for Caili. It's just that we think holding her is what's best for Caili:

Her temperature stays consistent, and her breathing and heart rate both get better, not more labored. It's our hope that she'll continue putting on weight like she should, and our holding privileges will be gradually increased back to the point where we can hold her as much as possible!

Holding limits aside, we're absolutely thrilled at her progress! The fact that she's been able to last more than a week on the cannula is awesome; it means that when she does set about growing, all the new lung tissue she grows should be totally healthy--unharmed by the force of the ventilator. Her meteoric rise seems to have really surprised the doctors too, although they are quick to remind us that setbacks could of course still lie ahead. We're all too well aware of that, but for now we've doing our best to embrace the good news, not think too much about what could go wrong, and cross what bridges lie ahead when we arrive at them.

Here's one final picture of the diaper that she's just outgrown. Note that she's outgrown it not in size (it was actually still too large), but in output. My mother carries one around (an unused one, of course!) and shows it to anyone and everyone. I have to agree that it is about as cute as a diaper can be!