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.