Caili's Due Date Arrives

Believe it or not, today (Sunday December 30th) is Cailin's actual "due date."

It hardly seems possible that it is just now here, considering she's been with us for 15 weeks and 2 days already. And while I thought I would feel sad if this day came and I didn't yet have her home, I actually feel elated. Cailin has come so far and is once again doing great!

She had been off the vent and on CPAP since Christmas day. And she had been doing so well with the CPAP that today they moved her back to the high flow nasal cannula, which she was on before she got sick. And so far, so good. While she was breathing fine with the minimal support the CPAP was giving her, the CPAP mask was really bothering her. She kept the nurses busy the past two nights...crying and fussing for hours. So, hopefully the tiny little cannula prongs in her nose will allow her to be more comfortable.

In addition to her progress with breathing, they have weaned her off most all of the other medications she was taking for the past 2 or so weeks. And, she is back to getting her full nutrition from just breastmilk (no more IV nutrition). Unfortunately though, since we still don't know if what happened was reflux/aspiration, they are still feeding her the milk via the tube that goes directly into her small intestine. That way, if she does have reflux, it would have to travel very far uphill to get into her airway and end up in her lungs. Hopefully this week she will have some tests done to help us determine if this is necessary. But until then, better to be safe than sorry!

To celebrate her due date we brought in a mobile for her crib (the occupational therapist advised against it until she was "full term") and a fancy shmancy new swinging plush seat that just came in the mail as a gift. Caili really seemed to love it and the nurses and doctors got a kick out of it too! As you can see in the newest photo album (at right or here), quite a crowd a crowd gathered in her room to admire her in her new swing!

While we certainly have a ways to go before we can start packing her bags...we are just thrilled to be where we are today.

Hope everyone had a wonderful holiday and we wish you a happy and healthy New Year!

A Christmas Dream Come True

The past week was frustrating and gave us no sign of the amazing progress that was to come. Last Wednesday’s extubation and the subsequent lung collapse was hard on Caili, and the recovery was slower than we had hoped it would be. Late last week and into this weekend it seemed that they would take most of the day to get her on slightly better ventilator settings and then something would go wrong—her tube would get pushed in too far, she’d get upset, etc., and they’d have to increase her support such that all the progress was lost. It felt like we were getting nowhere fast.

It wasn’t until Sunday that Caili was back to the same ventilator settings that she had been on before they extubated last Wednesday, which weren't really all that great. There did not seem to be much cause for optimism. The doctors were saying her lungs were worse then before all this, and even then they weren’t great. They wouldn't--and in all truth couldn't--predict when she might again be able to breath without the aid of a ventilator. We were beginning to fear that Caili was heading down a path we hadn’t yet had to consider, one involving long-term ventilation. Thankfully, it seems that Caili had different plans…

Yesterday (Christmas Eve) Caili’s strength really began to shine through. They had her much less sedated, yet she was still comfortable, and showing her feistiness. They even started feeding her again, via a new tube which goes past her stomach to her jejunum (brought in from DuPont Children's Hospital just for Caili).

I was at home sick wishing I could be with Caili and Lauren, and every call from Lauren reported further weaning of the ventilator settings. We headed off to Lauren’s brother and sister-in-law’s house last night (Christmas Eve) to celebrate with her family, and both times when we checked in the nurse reported progress. Caili was again fighting, breathing, getting better.

Today (Christmas Day) I felt better (but still wore a mask in Caili’s room to be safe), and we both headed to the NICU at 10 AM, Christmas tree and gifts in tow, to celebrate Caili’s first Christmas. Her progress had continued, and we were greeted with ventilator settings that were nice and low. Caili looked good—like her beautiful, happy self in fact. We were again a happy, hopeful family. Then the doctor came by, and bowled us over with her news; if Caili’s next x-ray looked good, they were going to give extubation a try. Hope tinged with fear washed over us. Could we be about to receive a Christmas gift from our daughter and her doctors that just a few days ago seemed impossible?

The x-ray did look good, and extubate they did. She was again back on CPAP, which looks like an elephant trunk, and she was flourishing. She seemed ready this time, and set about the task of breathing like an old pro. We beamed with joy as we tried to ignore the fear that she might not yet have the strength to keep going, and that this might again result in a step backward. But Caili’s will quickly pushed that fear from our minds.

When we left at 10 tonight she was still doing great—they were weaning her oxygen, and she was breathing with calm, deep breaths, and occasionally crying. It was so nice to hear her cry—she can’t be heard on the ventilator since the intubation tube splits her vocal cords. But sadly her cries sound hoarse, no doubt a result of 2+ weeks of having a tube down her throat. Once comforted, she truly seems happy with herself. We are so proud and so excited.

We know she still might not have the strength to keep breathing on her own, but we're very hopeful that she will, and we should have a pretty clear indication of whether or not she can within the next several days. If so, we can hopefully hold her again soon (the doctors recommended against holding her while she was on the jet), and if all goes very well, she may start eating on her own again, but in the meantime she is again getting all her nutrition via her feeding tube, and no longer requires IV nutrition, which of course is a great step forward.

See the slide show to the right (or here) for pictures of our glorious day. Thank you all so much for your prayers. Our Christmas dream did come true, and we’re very hopeful for what the New Year will bring.

Merry Christmas to you all!

Small Steps Forward

Thank you to each and every one of you who has been praying for, thinking about and asking about little Cailin. Dealing with this setback and now watching Caili struggle to get better has been the most difficult time of our lives. But, your thoughts and prayers have really helped us immensely. Knowing that so many people are pulling for Caili has made us feel like we aren't in this alone. And, if I can brag on Caili's behalf, it seems to us that there really are alot of people who have fallen for her and are emotionally invested in her journey. Again, that means so much to us and will to Caili some day too.

As for the update...I wish I had better news about where we are. Don't get me wrong, since last Friday, we have made improvements. They have been able to wean down on some of her medications and some of her vent settings. However, Caili still requires alot of support and isn't tolerating real food. Unfortunately, the doctors look at the Xrays of her lungs and confess that some areas look better but some look worse. It seems we haven't yet completely resolved the damage from the event that got us here (whatever that was) and even when we do, it appears that there will be additional damage from the events of the past 2 weeks. So, the big question is when will we get back to where we were before this all started, i.e. nasal cannula, feedings by mouth and heading home? Unfortunately, only time will tell.


After reading the previous paragraph you probably wouldn't believe that on Wednesday of this week they did try to extubate her (remove the tube) and put her on the CPAP. If you remember from before, the CPAP is a mask which provides continuous positive airway pressure and oxygen but is less invasive and forceful than a ventilator. The thought was maybe the tube down her throat was causing her to need more support. After giving us quite a scare, Caili did remember how to breathe on her own and was doing great for a few hours. But, after about 4 hours, Caili appeared to be really struggling. Watching her vitals, they realized she wasn't getting better but worse so they put her back on the jet ventilator. The Xray proved they were right. It appears that her right lung wasn't getting enough O2 so it essentially collapsed. Our little fighter was working twice as hard since she only had one lung working...I know, heartbreaking.


I think the essence of what Tim and I (and many other family and friends) are dealing with is just that...heartache. Caili is so innocent and doesn't deserve to be struggling so hard. I personally am really having a hard time these days. I got a real taste of what it is like to be a mom over the past month and I loved it. In my opinion, there really is nothing like the feeling of holding, feeding and comforting your own child. And now, not only are those pleasures gone, (temporarily I know) I also have to watch her struggle in pain.


Please keep us all in your thoughts and prayers as we struggle through these next few days of what should be a joyous holiday season.

Worse, Then Better

Where to begin? How to describe what has surely been the most difficult week Lauren and I have ever faced, a week that was even tougher for Caili though it was only her 13th week of life? Thank God she is strong—the doctors tell us she, and most preemies, are stronger than we can imagine, and can push through things that we adults could not survive. I’ll start where Lauren left off.

Wednesday morning began with Christopher’s wake. His loving parents seemed stronger than we could have believed. We felt so sad for them, yet so frightened for Caili and selfish for thinking of ourselves and our daughter at their time of need. We headed for the hospital.

On the way, we placed a call to Caili’s nurse to check in. The doctor answered, which is almost always a bad sign. Caili was really struggling. The doctor, normally upbeat and encouraging, sounded frightened, and expressed concern. We were panicked.

Upon arrival at the NICU we were greeted by new machines hooked to Cailin, and a group of doctors and nurses at her bedside. The doctors took us to a private room. They were running out of options. They had one medicine left to try, and would start it immediately. We asked what would be next if it didn’t work. They didn’t have a clear answer. We knew the truth; they weren’t sure. How did we get back here again?

Later in the day, she seemed to stabilize a bit. We were still frightened, but hopeful. We stayed with her as long as we could, and then headed home for the night to feed Ellie (our dog), to eat, and to try to pull ourselves together. I played Frisbee with Ellie and Lauren did some chores. Lauren’s motherly instinct called her back to the NICU, so back we went. Her instinct was spot-on.

Our arrival at the NICU brought the head nurse out to see us before we could even get to her room. She was really having trouble. They were “bagging” her because the ventilator wasn’t giving her enough oxygen. The medication should have started to help her by now, but didn’t seem to be working. They were going to try another ventilator, despite the fact that she had been on nearly every ventilator they have in the past 48 hours.

Lauren’s mother and sister, Pam arrived as we were washing our hands, trying to prepare ourselves emotionally to walk into her room. Pam somehow knew to come and did so despite the fact that they hadn’t been able to reach us.

We gathered in her room. They broke the rules and let all four of us in, knowing that Lauren and I needed support. The on-call physician came in from home to help the fellow, and the physician that we knew before Caili was born (he’s the reason we went to Jefferson) left his evening to come provide his input, his wife in tow. He wasn’t even on call. I counted 9 medical professionals in the room helping Cailin, and supporting us.

Her oxygen saturation levels were far too low, at levels that an adult could not survive. They were far lower than they had ever been; 1/3 and then 1/4 of their normal levels, and they were staying there. How long could she survive like this? A question no one could answer. We knew her heart rate was the critical thing to watch; if it began to falter the consequences would be unimaginable. We stared at the monitor in a numb fog. Her heartbeat stayed strong. They decided to try the jet vent—the same ventilator that had saved her months ago. It didn’t work. How did we get here? How much longer could she take this?

They suctioned out a lot of secretions from her lungs and even re-intubated her to suction the tube itself. That seemed to help. They then put her back on the regular vent. Her oxygen saturation level came up—to a point that just a week ago would have had everyone panicked. This would be good enough for now, the doctors told us. We reluctantly decided to go home (it was hours past the time when parents are normally asked to leave) with assurances that the doctors would call us back if Caili took another turn for the worse.

When we called the next morning (Thursday), there was news of another vent change; back to the jet yet again. Thankfully, it was working better now. Her oxygen saturation was climbing. We went in to see for ourselves, and sure enough, she was doing better. Not great, but better.

Thursday continued to be a stable day, and Friday got even better. By Friday afternoon they were actually able to start weaning some of her settings. This was the first step forward in over a week. Hopefully we’ve seen the depths of this issue and Caili is heading back toward where she was before this episode began.

The emotions of this NICU rollercoaster are hard to describe. It feels like how I imagine a war zone must feel, we parents being mere spectators in our children’s epic battles with life and death. There are no breaks in the fighting, no time to relax. When your child is doing well the enjoyment is not without a price; there is always a friend and compatriot whose child is losing the battle. Your heart aches for them, and their pain reminds you that your own child is still in the battle zone, balanced on a fragile precipice from which she could fall at any time.

So what happened? The short answer is that we’ll never know. Caili’s lungs were fragile. One doctor told us that the X-ray’s of her lungs from before this event are such that he’s shocked she was able to be off the vent at all. An adult would surely be on a ventilator with such sick lungs. So it didn’t take much to knock her down. The two most likely candidates are a virus (something as simple as the common cold perhaps), or maybe something they call “micro-aspiration.” Or perhaps it was both. The latter is caused by reflux—common in preemies, and simply means that over time very small volumes of stomach contents reflux up and are then aspirated to her lungs and cause inflammation, ultimately causing the downward spiral we witnessed.

Whatever it was, we’re hopeful it’s behind us. Caili has proven what an incredibly strong little girl she is, and we’re very hopeful she’ll recover soon, come back off the vent and her numerous medications, and once again get back on the path home to us. We can’t wait to get there.

Wishing We Had Better News

Today started with a call at 4AM to inform us that Caili's lungs had collapsed and she was really struggling. At the point of the call, they had already been working with her for hours trying to get her stable, and they still weren't there. In the background, I could hear the alarms sounding that we have come to hate. I knew they were for Caili. We were beside ourselves.

We arrived at the NICU hours before we were allowed this morning to see little Caili still struggling. She was once again surrounded by a team of doctors and nurses at her bedside. Something we thought we were past. And to make matters worse, the doctors and nurses looked very sad.

The question we have all been asking (doctors included) since this weekend when Caili started to struggle is what happened. As you saw in our post this weekend, she had been doing great. Amazing us with her progress. One theory is that she has some sort of virus or cold that just isn't showing up on any of the cultures. Another theory is that little by little Caili's reflux (common for preemies) has been causing her to aspirate milk into her lungs. And that in turn caused an inflammatory reaction or worse yet an infection.

It seems either theory is treated in a similar way right now...support her with what she needs to breathe while she is having such terrible difficulty and hope that antibiotics (Zosyn...for my Wyeth friends) and some anti-inflammatory drugs work. Then, take it from there.

I'm happy to report that as the day progressed, they seemed to have stabilized Caili.. She's no where near where she was just a few days ago. She's still intubated, on the ventilator, getting lots of sedatives and medications and getting nutrition through an IV rather than breast milk. But, at least the doctors don't currently feel we are at risk of losing her.

Obviously, this is an incredible set back. We went from wondering if she would be home by Christmas or early January to wondering if she would make it. And unfortunately, we are still far from out of the woods. One doctor told us on Monday that it might get worse before it gets better. We can only hope that we have hit the peak and Caili can see some relief from here.

Honestly, these last few days have been the hardest yet. As you can imagine, we have really fallen in love with our little Caili. We are emotionally and physically exhausted but continue to be optimistic that she can fight her way through this. And we will continue to update you as we know more.

As they say, "One day at a time".

Two Steps Back

I'm very sad to report that the medication given to Caili didn't help. She struggled all of Saturday night, and on Sunday morning they put her back on CPAP--which blows pressurized air into her nose. That didn't work either, and this morning at 3 AM we got word that she's back on the vent. They think she may have an infection, and they're giving her antibiotics to fight it while they wait for the test results to be sure.

They told us she would get an infection at some point--it's nearly unavoidable for a 24 weeker apparently, so we're certainly blessed it happened now when she has some reserve as opposed to weeks ago when she was already struggling.

We'll update you all when we know more. For now we're just hoping, praying, and trying not to be too scared. The events of this week have made it all too clear to us that nothing can be taken for granted in the NICU--or in life in general for that matter. But she's strong and determined like her mom, and with so many people praying for her and the great care she's receiving she'll pull through this and be off the vent again soon.

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

A Tragic Day at the NICU

Caili’s been struggling since late last evening. She’s having trouble getting enough oxygen, which is hard to see. The level of oxygen in her blood drops, and because she is innately aware she begins to breath hard—120 breaths per minute or more. Both the lack of oxygen and the fast breathing cause her monitors to alarm, sounds we had gotten used to hearing infrequently The thought seems to be that she has fluid in her lungs, and they’re giving her medicine to help her get rid of it. Hopefully it will work. We’re frightened. But mostly we’re sad. And since Caili’s blog is as much about our experience as her’s, I hope you’ll indulge me as I explain why.

Christopher’s mom was the first parent we met in the NICU. She was full of energy, sweet, loving, and incredibly encouraging. Christopher was born at the exact same gestational age as Caili—24 weeks and 5 days—but roughly 3 months before Cailin. His first three months had been more difficult than Caili’s. Infections, difficulty eating, etc. But he was still fighting, and both of his parents were fighting just as hard.

Throughout our NICU journey, Christopher’s parents have been an inspiration to us. They have advocated for their son, doing all they could to ensure that he got the best care possible, and that he had the best future possible. When Christopher came off the vent for the first time, not long after Caili was born, they spent nearly 2 full days in the NICU holding Christopher’s mouth shut as he laid in his crib, ensuring the oxygen being blown into his nose didn’t escape from his mouth, hoping to keep him from faltering and returning to the vent. To stay in the NICU overnight required winning approval from the doctors, and then again from the nurses, some of whom perhaps didn’t fully appreciate their labor of love. That’s when I asked for your prayers the first time. It was an incredible labor of love.

Christopher got better. He stayed off the vent, and eventually moved to a transition room, on the path to going home. Caili’s hasn’t even taken that step yet. But it all went south recently. And today, Christopher’s fight ended. He was six months old. He had given his parents his first smile last week. It was also his last. He was a beautiful baby, and his parents are wonderful people. They don’t deserve this. No one does.

But he did touch our lives. He and his parents have been our inspiration. In Caili’s darkest hour, when we thought we might lose her, they were there, encouraging us, comforting us, giving us hope. Christopher had faced such challenges and overcome. Caili would too. It’s tragic that his last challenge was too much for him to face. But his life, and the six months his parents endured in the NICU, were not in vein. He touched us. And we hope he touched you. Please say a prayer for him, and for his family.

Rest in peace dear little Christopher, and thank you for touching our lives.

Caili's First Photo Album!

We've added a new feature to Caili's blog; there is a small photo album displaying on the right side of the blog, below the main picture of Caili. The pictures display there in miniature, but you can can click on any picture to open a larger version in a new window. Once in the new window you can click on the slideshow link on the right side to see full-screen versions of all of the pictures.

For those of you reading this via e-mail, to see the album you'll either need to go the blog or you can go directly to the album. If you use this link to the album, the slideshow option will be displayed as a button above the pictures.

We hope you enjoy Caili's photo album!

Feeder, Grower!

Big news! Caili is now 4 pounds and has been officially promoted to “feeder, grower” status, meaning that those two things are what she has to concentrate on in order to come home to us! That status is reflected in her posh new crib:

Here's a picture of her enjoying a little daddy time tonight:

And here she is as we left her tonight (Wednesday), surrounded in comfort by her beloved "Zaky's":
She’s doing great on the eating front, working toward eating on her own rather than relying on the tube in her stomach. The doctors had limited her to one feeding attempt a day to keep her from over-exerting herself, and for the first few days days she ate fairly small amounts. However on Monday she decided she'd had enough of the tube feeding and ate the entire amount they normally give her via the tube and then some--a total of over 50 cc's! She did the same again yesterday, but today was a little too tuckered out to eat quite that much.

The eating effort really does wear her out; when I got there on Monday evening after the first time she ate her full feed she was totally pooped, and could barely open her eyes. She did so only long enough to express her extreme displeasure at my taking her temperature, which we do by placing the thermometer under her armpit--her least favorite parental interaction.

But she's building strength and stamina, and her ability to deal with the stress of feeding is amazing. She gets out of breath like a sprinter, and simply stops, rests, and when she's ready, resumes eating. I'm sure full-term babies do the same thing, but with her sick lungs it seems like quite an accomplishment to us!

One sad note; Caili's friend Christopher is having an extremely tough time after seeming to have turned the corner for the better. I know many of you already do so, but we'd be grateful if you'd add him and his loving family to your prayers.

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!

A Great Weekend!

Cailin made it through the weekend on her cannula! In fact, she seems to be doing better on it then she had been doing on the ventilator...and certainly seems happier than she was with that awful-looking CPAP.

More great news - she has started gaining weight again. You may recall she lost a lot of fluid last week from the meds they gave her so she was back to around 2 lbs. But, over the weekend, she gained a little over an ounce. Not significant weight (and she does need significant weight gain) but it shows that even though she is definitely working harder on the cannula, she is still able to gain!

I included 2 pics below. The bottom one is from the day she was on the CPAP...not a flattering picture but for informational purposes :) And the top photo was taken from my phone. Not the best resolution but it does show her pretty little face without that awful tube down her throat!

Thank you again for all your continued thoughts and prayers...they seem to be working!!!

Continued Progress!

As Lauren reported in her post on Thursday, we were overjoyed when Caili extubated herself and then got switched to CPAP. Seeing her on Thursday was awesome--it was so great to see her free of the big ventilator, and without the tube in her mouth. However, she didn't seem to be loving the CPAP. Lauren was convinced she seemed scared, and I'm inclined to trust her mother's intuition. The CPAP is a bit scary--it consists of a big mask that covered her whole nose, and because she's so small it was right against the corner of her eyes--it took her awhile before she was brave enough to open them again. And it is strapped to her head complete with a big (and not too attractive) head-gear. Anyway, despite seeming a little fearful, she was doing pretty well, and we were hopeful that she'd be able to remain on CPAP, our hope being that in a week or so they'd try progressing her to the next even more mild ventilation option.

On Friday morning, less than 36 hours after they put her on CPAP, they decided that she was doing so well she was ready for that next step, and they moved her to something called high flow nasal cannula, which is a small clear line with two nasal prongs. It's like what they frequently use on adults, except that they push a lot more air, and the air is humidified so as not to dry out her nose. This step forward was a total surprise, and obviously we were, and are, over the moon. She looks so much happier and better, and she's just doing great! We'll try to get new pictures up soon. We are blown away by her progress, and in truth, the doctors even seem to be surprised.


She worried us a bit last night with a higher than normal heart rate and some oxygen saturation (the level of oxygen in her blood) issues, but that was unsurprising given the incredible stress of her room, as it was a nurse short, and the babies all seemed to be having issues at once. The stress that can build in a NICU room is unlike anything I've ever experienced--it's hard to put into words--it takes on a liquid form, and begins to make me feel like I might drown in it. Lauren thinks Caili can sense the stress, and I think she's right--last night sure seems like proof. Fortunately, once Caili finally fell asleep, she had a great night and continued to do incredibly well today.

I got to hold her again this afternoon--and she slept on my chest for what seemed like hours. It was amazing. She's now gone nearly 3 days off the ventilator, and seems to be holding up very well. However, they tell us that babies as small as Cailin sometimes do well for up to a week and then simply run out of energy. After all, she wasn't meant to breathe on her own for another 9 weeks. We're hoping Caili has the strength to keep going, but regardless we're grateful for this respite from the pounding force of mechanical ventilation on her fragile little lungs, no matter how long it lasts.

The big thing that we now have to focus on is growth / weight gain. The stresses of the week caused her to drop back below 2 pounds as of Thursday night, but they weighed her this morning at almost exactly 2 pounds--so she's definitely back on the growing track! And it should be pointed out that she doesn't have all the ventilation tubes weighing her down anymore, which may account for some of the weight loss! Hopefully she'll stay healthy and keep getting bigger and stronger!

One final note--it's strange how the NICU becomes your family, and your heart breaks for your baby's neighbor's pain, and rejoices in their good news--these people that not so long ago were simply pregnant strangers, but are now sharing with you the horrific experience of watching your children fight for their lives, with no control and little ability to help them. One of Caili's neighbors in particular is at a critical stage, so, if you can add little Christopher to your prayers, we would appreciate it.

As always, thank you for your thoughts and prayers, for Caili and for Caili's roommates.

Extubation!

Caili has continued to do well--so well the doctors had been talking this week about the possibility of extubating (removing the ventilation tube currently down her throat) her today or tomorrow and instead using a more mild form of ventilation, called CPAP. A CPAP uses prongs in her nose to provide ventilation support, rather than a tube down her throat. While it is still a form of ventilation, it's less invasive, more comfortable for Cailin, and bears less of a risk of infection. However, with the CPAP, Cailin will have to work harder to breathe as this modaility of ventilation only supports her as she breathes. It doesn't provide any breaths for her like the typical method of intubation. So, bottom line is that with a CPAP, Cailin must initiate each of her breaths on her own. Once she does breathe, the CPAP provides her with some extra support, but the majority of the effort is hers...a big step for our little Caili.

In addition to the progress with her lungs, she has also been telling us she feels better in other ways. Over the last few days, Cailin seems to have become a lot "fiestier". She's been awake alot more, looking around, communicating with the nurses (and warming alot of hearts I might add) and grabbing onto anything she can --our fingers, a rolled up gauze pad her nurses made for her, the tape holding her intubation tube and...the tube itself.

Well, maybe you see where this is going...last night Caili decided she didn't want to wait any longer for her CPAP and she took matters into her own hands and extubated herself. Since the doctors had been discussing the possibility of moving to CPAP anyway, they figured they would give it a try. And, we are thrilled to report as of 7AM this morning...it's working!

Again, Cailin has alot of work ahead of her and the doctors say that the next 48 hours will show whether she can handle it. It's great news that she has made it this far but they warn us that little ones some times start out OK but then get tired...

Please keep little Cailin in your thoughts today as she pushes through this next hurdle.

Daddy's Turn!

It's been a good week! Cailin has continued to gradually improve, and we've continued to get to interact with her more. Lauren got to hold for the second time on Friday--this time for an hour. What joy! Sadly, I was working and missed it, but Grandmom (Lauren's Mom) was there for the big event. Cailin loved every minute of it, and even got to be fed while in Mommy's arms (through a tube but she still seemed to enjoy it). And the good news for me was that I had agreed to a 2 to 1 ratio of holding her (Mom's need priority), so that meant I was next!

On Friday night they continued to move the ventilation settings down gradually, but this time they reached a challenging point for little Caili. She started to struggle just a little more. She made it through Saturday with nearly continuous "comfort holds"--which is just a light, steady touch on her head and rump.

On Sunday morning Caili was struggling a bit more. They actually had to move back to Friday's ventilator settings--not an ideal step, but a necessary one. That, in conjunction with several other changes, allowed Caili's day to improve significantly. And it got better.

Midday yesterday, her nurse took down her "TPN," the IV fluid that's been providing her nutrition. Her feeding is going so well that they were able to stop her IV fluids, meaning that she's now getting basically all of her sustenance from breast milk! They may give her some vitamins from time to time, but otherwise she'll be digesting all her food. This also means she's getting all those anti-bodies from the breast milk, which is incredibly valuable as her immune system still isn't terribly strong. Lauren and I were thrilled with this news.

There was a thought I might get to hold her yesterday, but since she'd had a bad morning, my suspicion was that holding her was off the table. To my delight, her nurse said that she had recovered so well that holding her would be just fine. So, at roughly 4:15 yesterday afternoon, my daughter was placed in my arms for the very first time:

I can't begin to describe the joy of holding her. I was scared as they were preparing her--it's a bit daunting to watch them re-route all the tubes and lines--but the fear evaporated the moment she was in my arms. It took her a little bit to warm up to me, but after a couple of minutes, her stats began to improve, and soon she was sound asleep.

I held her for nearly an hour, and it was time for her feeding and "care," which is when they change her diaper, take her temperature, etc. The nurse decided to take her temperature while I held her, and it was normal, which was great--were she cold I'd definitely have to stop. The nurse suggested that she feed Caili while I held her. Caili seemed to love that. And I continued to hold her after her feeding was done. The rest of her care could wait.

After over 90 minutes of holding her, the nurse suggested that Lauren take a turn. Much as I was loving it, I couldn't deprive Lauren of that joy, so I carefully handed her to the nurse, who then put her in Lauren's arms. Lauren continued to hold her for close to another hour, and of course Caili loved every minute of it. Caili had to go back in her isolette just before 7, as the nurses change shifts at 7, and parents have to leave the NICU. In total, Caili was in our arms for more than 2 and a half hours.

What a day!

Finally!

After several days of stability (and a fair amount of begging), we were given the OK to hold Cailin tonight! Unfortunately, since she still can't maintain her own body heat, she could only be outside of her isolette for 30 minutes or so. And, since it is quite an ordeal, they only allowed one of us to hold her for that 30 minutes. Lucky for me, Tim was insistent that I be the first.

Leading up to it, I admit I was a bit nervous. I think mostly nervous that she wouldn't like it and her vitals would go awry. Given that she has been fairing so well, I didn't want to rock the boat. But, I had been told by so many people that little ones like Cailin tend to love it and I was certainly eager to try.

Once they lifted her tiny body up to get her ready to hand over to me, she was visibly unsettled. Her tiny little body was wiggling all over, arms and legs flailing about anxiously. She clearly was confused and not liking the disturbance. Within a second, the nurse had her out and placed her on my chest, skin to skin. It was amazing, she just stopped moving all together and settled right down. The nurse had me hold her with one hand under her bottom and the other supporting her legs and cupping her back. Words can't describe how wonderful it felt. Holding her tiny little warm body and feeling her so close to me was just incredible. I loved it and apparently so did she. Her vitals instantly stabilized and her oxygen saturation levels were far better than before they disturbed her. I talked quietly to her and just enjoyed every second of it.

Unfortunately, her ventilator tube seemed to be situated in such a way that it was "leaking air". So, I only got to hold her for 20 minutes instead of the planned 30. But thankfully, my fear for her safety overpowered my own sadness of having to let her go. They placed her back in her isolette and quickly fixed the issue with her tubing. All was back to normal. We helped the nurse get her comfortable and I have to say I felt a bit of incredible joy and also sadness. After 31 days of wanting so badly to hold her, 20 minutes was just not enough. But, as we say at least 10 times a day, one day at a time. The good news is that we both loved it and I'll look forward to the next time more than ever.


By the way, there has been much debate about whether Caili has red hair. While I don't love the enlarged version of myself, click on the picture to enlarge it and I think you'll see the answer to the question...

One Month Old

Taken on 10/14/07:

Cailin now weighs 2 pounds, 2 ounces! Some of that is fluid, but she's definitely growing, getting bigger and stronger. They're feeding 3 cc's every three hours now, and hopefully more tomorrow. Overall, our angel is definitely doing well!

Tonight was an exciting night, but I'll leave that part of the update to Lauren...

Feeds!

Cailin is now 4 weeks old (29 weeks "gestational age" as of tomorrow), and we're thrilled to report that she has continued to do well since her last excruciating low on Friday the 5th. Her ventilator settings have been slowly creeping down--perhaps a bit slower than Dad would find ideal, but progress is good no matter how slow.

And the best news is that she's been stable enough that they gave her approval to be fed yesterday! They feed her through a tube to her stomach, and they're only feeding 1 cc at a time--just enough to "prime" her digestive system. They started at 1 cc every six hours, but the nurse just let us know that they're already moving to 1 every three hours! Before they had to stop her feedings several weeks ago, she was getting 2 cc's every 3 hours, and if all goes well she'll be back to that level soon.

And that's not all the good news; the doctor that takes over next week (they rotate the lead /attending doctor at the NICU every two weeks) is our friend that initially got Lauren into see the high risk pregnancy doctors at Jefferson. It so happens that he's a big believer in kangaroo care, so we're both very hopeful that Cailin will remain stable, and if so, we should be holding her very soon! We both can't wait--I think I'm actually more excited for Lauren to hold her than I am to hold her myself. They already have such an amazing bond, which of course isn't surprising. Cailin lights up in her little isolette the second she hears Lauren's voice. I'm quite certain she'll be ecstatic to be held by her mommy!


And we got even more good news this week; they've been monitoring a hormone level in Lauren's blood which relates to her pregnancy complication. It needs to return to normal in the next several months, and it was down by 50% again this week. We met with one of Lauren's doctors yesterday, and he was thrilled at her progress, and also gave her the all-clear to resume normal activity, which means she'll probably start biking down to see Caili each day.

There was a little bad news this week--Cailin's central line came out, and on Thursday she had her second surgery to put it back in. Fortunately the surgery went well, and hopefully this time the line is in to stay until they want it out. But given the previous week, this was minor. If every week could go this smoothly, we'd be thrilled!

We hope you are all well. Thank you all for your continued prayers and words of encouragement. We can't tell you how much we appreciate all of you.

Forward Progress Again

Last week continued with much of the same, a little forward and a little backward progress. And although we are writing this post with good news to report, it was a really rough couple of days.

Early Friday AM, Caili had her first surgery to insert a central line — a catheter that gets inserted into a major vein in her neck to provide doctors and nurses with a more stable way to give meds and draw blood. Unfortunately, it is a necessary evil because a typical IV line often won’t last in babies her size. Her veins are just too small and can easily collapse.

The surgery had to be delayed slightly because Caili’s oxygen level began to drop lower than is ideal. This was the first sign of what was to come. They were able to perform the procedure, and it seemed to go well. But a few hours later, Caili began to falter again. She was at the highest settings possible for the ventilator she was on yet she wasn’t getting enough of what she needed. The doctors tried switching her back to that vent we described in our last post (the one she had rejected twice in the past) to see if they could make it work for her. But, as we all suspected, that didn’t work.

By the early afternoon, the doctors were very concerned and of course we were panicked. But, after several excruciating hours, the doctors seemed to have figured out that this episode was not too different from a previous episode, where the solution was to give her more fluids and blood. They weren’t sure it would work since things seemed to have been more severe than the prior episode. Yet they seemed to be out of options. But thank God, it appears that it did work. Since Friday night, she has been steadily improving. She has tolerated several reductions in various ventilator settings and is again heading in the right direction!

As for Tim and me, we’re doing as well as can be expected. I will say one thing though, we seem to be learning to cope and accept the good days (relatively speaking) when we get them. When you experience a day like Friday, a day like the past three seem like days to celebrate, enjoy friends and family and even laugh when we can. We have quickly come to realize that Cailin has us wrapped around her tiny little fingers.

I know you’re wondering because it’s certainly a logical question…where do we go from here. Well, we need her to continue to remain stable enough to allow her lungs to heal, grow and tolerate even lower ventilator settings. If she can stay stable for a week (or maybe less) the doctors will feel comfortable re-starting her feeds. Along with the feeds, another week of stability might allow us to do “Kangaroo Care,” which means allowing Tim or me to hold her against our skin. We can’t wait…because as of this post, neither one of us has had the chance to hold her.

Thank you again for your continued support and prayers and let’s hope our next update has continued forward progress to report.

The Ride Continues

So much has transpired since my last post, and yet virtually no progress has been made. Frustration seems to be the name of the game at the NICU. Parental will simply has no impact on the ability of our tiny little babies to get well, to grow, to breath.

Cailin's status hasn't changed much, but to get to this point has been more trying that I could possibly explain to anyone that hasn't had a child in the NICU. I last posted on Friday night. Saturday was a good day, followed by another rough night. Sunday was amazing--oxygen levels down, vent pressures down, discussion of possible feeds the next day. Happy parents, hopeful parents. Parents of a child that was back on the path out of the NICU. In truth, parents that still hadn't learned what giving birth to a "24 weeker" really means.

Monday the trouble began anew. Her lungs simply stopped working as well as they had been. All the progress on oxygen levels and vent pressures was lost, and then a lot more. We were walking backwards. By our visit last night things were a little better--she was stable at least.

And that continued until this morning, when, at around 9:30 AM, Lauren got our first call from the doctor--previously we had called the NICU for status many times, but they had never felt the need to call us. This call brought bad news; Caili had taken a turn for the worse, and despite their efforts she wasn't improving. The doctor--an incredibly kind woman that happens to be a member of the church at which Lauren and I were married and still attend--was "concerned."

I left work, picked up Lauren and her Mom (who thankfully had already been on her way when Lauren got the call) at home, and off we went to the NICU. I can't describe the sheer terror of the site that greeted our arrival; a team of doctors, nurses and a respiratory therapist gathered around Caili's isolette working frantically, looking concerned. Monitors flashing numbers that were too low, the incessant alarms silenced. I'm sorry for those of you that can relate.

We have been told that seemingly small problems can mean very big changes in our daughter, and we're just beginning to see how true that is. Because of this, doctors must react to a problem based on what evidence is available at that very moment. If they wait for test results, it may be too late. So, if Cailin is havng a significant issue that could be indicative of 3 different causes, they simply treat all 3 while they wait for the test results.

Before we had arrived this morning they had tried changing her ventilator--they moved her to an oscillator (likened to a VW engine by a friend whose son was on one too)--and for the second time Caili didn't like it. Back to the jet ventilator. They then began to treat what they thought might be pulmonary hypertension. And they gave her blood--a tiny amount, but she has so little, and she simply can't replace all that they take for the many tests they must do. And they made other changes; stopping medications, starting new ones.

The net effect was that she stabilized within 30 minutes of our arrival--thank goodness. She continued to be stable, although the ventilator is still not doing what it needs to do. Setting the jet is much more an art than a science. They change the settings, test her blood gas, and change them some more. Hopefully the changes they made before visiting hours ended at 10 tonight will have the desired effect, and we'll awake to good news. If they can just get her stable, they can start feeding her again. At first it won't be for sustenance, but more to "prime" her underdeveloped digestive system--for now nutrition comes by way of an IV. But when she can tolerate a steady increase in feeding and they get to a point where it becomes sustenance, it will be invaluable to her ongoing growth and development.

For those of you that read this far into this long post, I should note that the other parents in the NICU, the doctors, and our friends that have been through this all say the same thing; that while Caili's path through the NICU will be unique as it is for every child, it has thus far not been any better or worse than is expected. There is still every reason to be hopeful and optimistic despite the fact that there are undoubtedly many bumps in the road ahead.

As always, thank you for your thoughts and prayers, and for taking the time to read about Caili's progress.

NICU Rollercoaster

They've been telling us to expect good days and bad, and good friends of ours who have been through this (with triplets, that are now wonderful, healthy little boys) and have been an incredible support to both Lauren and me--told us from the beginning that the line between a good day and an awful day is paper-thin. Babies born as early as Caili are simply so underdeveloped that little things can have big impacts...

After looking incredibly sick and lethargic two days ago, and having real difficulty in terms of breathing, Cailin had a good day yesterday, but not such a great night last night. Today was again better and when we left at 10 PM. She seemed to still be doing relatively well. Her fiestiness had returned, which was a tremendous relief. Hopefully the night continues to go well for her.

Lauren is doing better; the mother of one of Caili's neighbor's made the point that the quality of their days guide our days, and that has been very true for us. This woman's son just passed 120 days in the NICU, which from where we're sitting seems like an eternity. Her son came off the vent today, but she still has a lot of time to go before she can take him home. We so hope to have Caili home by Christmas, but in truth that is seeming like a longshot at the moment. But whenever it happens, it will be a wonderful day.

Keep Praying for Her!

Lauren and I are trying to stay as optimistic as possible--focusing on the good news like her weight gain as per my previous post--but over the past several days Cailin's breathing has become a serious issue. They've had to move her to a different ventilator--called a "jet ventilator"--to help address the issues. It didn't help as much as we had all hoped.

They're trying another approach, but the next several days are critical. Please pray for her, and for Lauren, who is struggling at the moment; it's all a lot to take.

Lauren did get some good news today--a critical hormone level that is related to her complicated pregnancy dropped dramatically. We need it to keep on falling back down to normal levels, but today's progress was welcomed!

I'm not sure we'll update the blog this much in the future, but it is nice to be able to update it as we please.

Thanks again for your continued thoughts and prayers,

Tim

Weight Gain!

The nurse just told us that Cailin gained 112 grams--nearly 20% of her birth weight of 628 grams. She now weighs 1 pound 10 ounces. Of course it's tough for them to weigh her too accurately with all the equipment, but still, it's clear she's gaining weight, and that's fantastic--growing is the thing she needs to do most right now!

Pictures!

Sunday 9/16: Here, you can see what I look like up close. I hadn't had my first bath yet so please excuse my dirty forehead!

Monday 9/17: When the cover is on for my isolette (which it almost always is) these little "port holes" allow my friends and family to hold my hand.

Monday 9/17: I look a little skinny but I hope to gain weight soon...

Sunday 9/23: I'm still not sure whether I like holding anyone's hand yet. Sometimes I do and other times, it kind of startles me.

Sunday 9/23: See, now my isolette cover is off because I just had my diaper changed. When my cover is off, Mommy and Daddy love to take an extra minute and get up close to me. But, can't keep the cover off for too long...I get cold.

9/25 Update: 11 days old

Our first update to Cailin's blog will start with the phrase Tim and I have been hearing over and over again, "Cailin is stable and doing what we would expect for someone born at her gestational age."

And that is true. The first few days she was in what they call the "honeymoon phase" where she seemed to be doing better than anyone could expect. But, this past weekend we saw our first true signs of her actual gestational age. And after a difficult weekend of ups and downs, Tim and I were introduced to a second phrase that we hear all too often, "This is the life of a preemie. One step forward, two steps back or vice verse."

All in all though, she is doing well. It has been 11 days since her birth and she is doing "as well as can be expected." In some areas she's doing extremely well and in others she needs a lot of assistance. So, we continue to pray and be hopeful that she will be the fighter we know she is.

As for Tim and I, we are still trying to sort out our new routine and are finding ourselves very frazzled trying to fit the normal life stuff in with time we want to spend with our daughter. So, please call or email us your words of encouragement as we certainly need them. Or, you comment on our blog posts on-line. But, keep in mind, your responses are visible to everyone who visits her blog. Whatever option you choose, we would love to hear from you. Just please understand if we don't get back to you right away.

We’ll try to update the blog at least once a week. As always, please keep our little angel in your thoughts and/or prayers. And, if your interested, we will post some pictures of her in her first few days. Take a look. We think she’s adorable! Lauren and Tim

Some Background

Welcome to Cailin's blog!

So, a little background before Lauren provides an update on where things stand today...

After being diagnosed with a rare and frightening complication at 12 weeks gestation, Lauren pushed through an additional 12 plus weeks of a very, very difficult pregnancy and gave birth at 4:50 AM on 9/14/07 to our little darling, Cailin Hope. She had gestated just 24 weeks and 5 days, and weighed in at only 1 pound, 6 ounces. While the emergency delivery was terrifying, both mother and baby made it through well.

We didn't have a name at the time of her birth and lack of Internet access in Lauren's hospital room sent me in search of a name book. We came upon Cailin, which the book described as both a Scottish and Irish name. Lauren and I both have Scottish heritage, and per the book the Scottish version of Cailin means "triumphant people," which seemed perfect for our little angel for whom we have so much hope. Thus "Cailin Hope" seemed the perfect choice.

As for this blog; we'll update it as much as we can, and we certainly welcome any comments. Share private comments via e-mail, and feel free to post public comments on the blog. Just be aware that they are public comments, and available for all to see.

We will balance our desire to share information with the need to protect Cailin's privacy, and to ensure we're not sharing things that will embarrass her when she's reading this for herself later in life!

Thank you all for your support, well wishes and prayers for Cailin!