Second Birthday!

If you can believe it, Cailin turned 2 on Monday (9/14)! She had a great day that ended with a skinned knee after she fell pushing her "mower" on the sidewalk--but she bounced back incredibly quickly. We're having a small party for her with Lauren's family (and my Mom) this weekend, but of course she still has no concept of a birthday--or even really of presents...

We're thrilled to report that she's doing incredibly well. She continues to be a very happy little girl, and thankfully, a healthy one too! She's totally off oxygen--although we still have it on hand in case of a particularly nasty cold. She still isn't eating as well as Momma and Dada would like, but she is catching up on the height charts despite not yet registering on the weight charts for her actual age (as opposed to her "adjusted age" or how old she would be had she stayed in Momma's belly for 16 more weeks, which is no longer really considered now that she's two). Her doctors seemed relatively pleased with her growth, although they all would be thrilled with a bit more weight gain--and the healthy lung growth that goes with it.

She's starting to talk a bit, and she understands an incredible amount--much like a typical 2 year old I suppose. She is a bit behind the normal 2 year old for both speech and "gross motor skills"--she should be running and jumping by now and is doing neither yet. But a delay is to be expected, and we're certainly not complaining, or worrying.

We had a wonderful 2 week family vacation this summer which included Ellie (but not Kotie, the cat) for a week at the beach (we rented a dog-friendly house on the bay in New Jersey with some close friends), had some time at home (which included a great day trip to Dutch Wonderland), and finally enjoyed a long Labor Day weekend in the Finger Lakes of New York with some of Lauren's family.

Cailin has been taking swimming lessons all summer, but with something like 0% body fat, doesn't do so well in cold water--even with her adorable little wet suit. Despite rapidly turning blue, she LOVED the first day at the ocean (as you can see from the picture above!). Her enthusiasm for the ocean diminished with each passing day, but we still managed to have a ball. We tried taking her in the lake once, but that was far too cold. She didn't care though, as she loved the few days with her cousins, aunt, uncle and other friends. Ellie loved the lake more than anyone, swimming after balls for hours on end every day, shocking us with the amount of energy she has.

We spoke to the new first year class of medical students at Jefferson about Cailin's journey again last week, and it's really unbelievable to think back on those days in the NICU and contrast it with how well she's doing now. We are incredibly blessed.

Updated pictures are available here. There are a lot of them as it's been a long time since our last post! Speaking of which, we were preparing for the March for Babies when we last posted. We're thrilled to report that Team Cailin Hope raised over $3,500, so thank you for all those that donated and those that joined us for the walk. Unlike 2008, the weather this year was ideal. Lauren and Cailin were even featured on the local news (you can watch the video here), and we were invited to thank the crowd as part of the opening ceremonies, which was an honor.

Anyway, we hope you all had a wonderful summer!

Tim (and Lauren and Cailin)

One Year At Home!

Our apologies for the long delay since our last post, but thankfully, no news has largely been good news. Cailin has had a great winter. As you can see from the album at right or here, she did the commensurate visit with Santa, and as is almost always the case around new people, she was all smiles! She loved her first Christmas with our families--not because she had any clue about the concept of presents, but just because she loved seeing everyone and exploring new (not baby-proofed) houses!

It seems hard to believe that she's been home with us for a year, but it's true, as she came home on February 29th of last year. In that time she's made incredible progress in her development, surpassing most of the milestones for her "adjusted" age (now 14 months), and is catching up with where she should be for her actual age (17.5 months). The doctors would like to see her caught up by the time she's 2, and she seems to be on track to do so--in everything but her weight and height. She's still petite--at just 18 pounds, 2 ounces, but is growing fast enough that the doctors aren't concerned (nor are we). She is still on oxygen when sleeping, and she seems to be growing increasingly unhappy about it. She loves to pick at the tape and pull at the cannula, which we frequently find around her neck--sometimes alarmingly taught. Thankfully the pulsoximeter's charming beeps quickly lets us know if she's not getting enough oxygen so that we can correct the problem!

She's not yet walking, but last week did take several cautious steps on her own under much protest (so I'm told--sadly I was at work). Her wonderful physical therapist was coaxing her to walk to mommy. Apparently many tears were shed, but walk she did. It has not since been repeated, but knowing Cailin she won't let fear hold her back much longer.

As for talking, she's definitely starting to find her voice. We don't understand much of what she says at this point, but we're pretty sure she does say cat, and she can definitely say no. Other words are more debatable... Speaking of our cat, Kotie, some of you may know that she has a reputation of being quite unfriendly to strangers--hissing, striking (she doesn't have front claws) and biting those that might try to pet her. We were fearful that she might react to Cailin in a similar way which might find her seeking a new home (Kotie, not Cailin!), but amazingly, she loves Cailin, and Cailin adores her. Cailin squeals when Kotie enters the room, and Kotie allows Cailin to pet her frequently, and has even allowed Cailin to sneak in a hug or two with barely a protest. Animals are sometimes quite amazing!

We've tried to put Cailin in a bit of a "bubble" during cold and flu season, although it's been broken for things like Santa, family visits, etc. Unfortunately it hasn't been totally successful; Cailin just got over her second cold. It was a nasty one, and she had to go back to wearing oxygen 24 x 7 for a week or so (which was much harder now that she's mobile--it was a challenge chasing her around with a tank, trying to make sure she didn't reach the end of her tether), but she recovered more quickly than I did from the same cold, and is once again off the oxygen except when sleeping, and doing great.

Speaking of how well she's doing, you may recall from posts last year that we are extremely grateful to the March of Dimes, as a number of the treatments that helped to save Cailin's life were a direct result of research funded by the March of Dimes. Lauren has become quite involved with the local March of Dimes, and she and Cailin were recently invited to a photo shoot with the new superintendent of the Philadelphia School District, Dr. Arlene Ackerman. Dr. Ackerman is the Honorary Youth Chair for the 2009 March for Babies. Lauren and Cailin both appear in a number of promotional materials highlighting Dr. Ackerman's commitment to the March of Dimes. Here's an example:

Of course we will be participating in the March for Babies this year as we did last year (hopefully we'll get better weather!), and would certainly appreciate your support of this extremely worthy cause; we'd love to have you join our March in Philadelphia on April 26th! You can go to www.marchforbabies.com/cailinhope to learn more, to sign up or to donate.

We hope you're doing well. As always, thank you for reading about Cailin!

So Much for Which to be Thankful!

We've had a great couple of months since Cailin's first birthday. She started crawling in October. For the first few weeks it was technically a "commando" crawl, which I referred to as the injured soldier crawl since she pulled herself along as if retreating from the enemy with a wounded right leg which she dragged behind. It was adorable. That has since morphed into a full-fledged crawl, and of course she's now pulling herself up to a stand on everything that can provide a good hold. She'll be walking in no time! Lauren also has her on a daily stair climbing regimen to build strength. Cailin can apparently climb our 15 stairs in under 3 minutes! Gates will be installed momentarily!

She enjoyed her first celebration of Halloween (she was still in her isolette and not yet able to wear clothes last Halloween), dressing up first as a pumpkin (very briefly--the costume was too small, but very cute!) and then as a bunny. A parade was held on Halloween to celebrate the Phillies world series win, so we took her to the parade in her bunny costume--she was extremely patient (missing her morning nap and getting a very brief afternoon nap in the car on the way home), and of course she was a big hit! Pictures can be seen at right or here.

Not long after the parade she caught her first cold. It wasn't much fun for any of us, causing a number of sleepless nights and one trip to the ER, but thankfully she weathered it extremely well. The experience revealed two advantages of her still being on oxygen (normally only while sleeping); by keeping her on it during the day and turning her flow up it made it much easier for her to breath during the worst of the cold, and it so happens that when you bring a child to the ER on oxygen you get bumped to the front of the line. Less waiting is always a good thing!

Also last month, Lauren found a home for the contents of Cailin's deep freezer:

We're thrilled that not only did Cailin benefit from lauren's breastmilk, but children all around the United States are also benefiting, as Lauren donated 6 full coolers of breastmilk to a non-profit milk bank that she found in Austin, Texas.

As you all know, we've had quite a year. Last Thanksgiving began with Cailin on a vent after her ROP surgery the day before--and back off the vent just before we were allowed in to visit her at 10 AM on Thanksgiving day. How far we've come--from fragile baby in an isolette that we could visit only from 10 AM to 10 PM to a peacefully resting and thriving toddler sleeping in the room next door. We're packing up Cailin and Ellie and heading to my sister's for Thanksgiving, relishing the ability to spend the holidays with family rather than in the NICU.

May you all have a happy and healthy Thanksgiving!

The Impossible Dream: One Year Old!!!!!

The Sunday before last was Cailin's first birthday. It was a wonderful, amazing day in stark contrast to the fear-filled day on which she was born.

Thursday, 9/13/2007 was a somewhat typical day in Lauren's complicated pregnancy. We had tickets to see the Walnut Street Theater’s opening night performance of Man of La Mancha. When I arrived home from work that night, Lauren was bleeding--a side effect of the pregnancy that had become increasingly worrisome. She didn't think she could go to the show, so we tried to give the tickets away. The first person we offered them to was a personal friend and, coincidentally, head of Jefferson's NICU. We thought the tickets would be a perfect way to think him for having gotten Lauren into Jefferson's high risk OB practice the very day we called him seeking advice on where best to get a second opinion regarding Lauren's complication. He couldn't use the tickets, so we hung up with him--having no idea we'd be seeing him roughly 12 hours later. None of the other people to whom we offered the tickets could go, and Lauren decided that she felt well enough to give it a try--with the thought that we would leave between acts if need be. Despite the fact that Lauren wasn’t feeling well, we were able to stay for the entire show, which I loved and she thought was just OK. We returned home, and Lauren went off to bed.

At 12:30 AM the next morning, I was still watching TV when I heard Lauren scream. She was bleeding profusely--worse than ever before. We immediately knew we'd be heading back downtown for our 4th trip to the ER for the same issue. By 2:30 AM we knew Lauren's body had decided that Cailin had to be delivered, but the doctors were hopeful they could stave off the delivery for a few hours, a few days, or maybe even a few weeks if we were really lucky. I had the cord blood bank rushing a very nice man downtown with a collection kit for Cailin's cord blood, not knowing that at 24 weeks there isn't enough cord blood to collect. By 4:30 AM they had called in the surgeon from home and scheduled an OR while the on-call neonatology fellow gave us the frightening details of what it would mean to have our baby girl enter the world after only 24 weeks of gestation. Shortly thereafter Cailin's heart rate dropped and Lauren's rose to a point where they could no longer differentiate Cailin's. To make matter’s worse, Lauren’s blood loss was becoming a significant concern. I feared for both their lives. They rushed her several doors down to a makeshift OR, and delivered her with the staff on hand, which thankfully was an extremely talented group.

Cailin was delivered at 4:50 AM. I got to see her for the first time shortly thereafter, and was shocked. I had never seen such a tiny, frail baby. She almost didn't seem real. A little while later I was reunited with Lauren, and sat with her as she slowly emerged from the anesthesia. Lauren's first time seeing Cailin was later that afternoon in the NICU, from a stretcher. I made countless visits to the NICU that day, not yet grasping the reality of our situation, having no idea of the difficult journey that lie ahead.

On Thursday, September 11, 2008, 52 weeks after the above events, Lauren and I left our bundle of joy sleeping in her crib, my mother babysitting, and went to see opening night of State Fair at the Walnut St. Theater. It was a great show, and we thoroughly enjoyed one of the handful of nights out we've had in the last year.

Lauren and I returned home, went off to bed, and we all slept well into that next morning (Cailin now sleeps through the night fairly frequently). We awoke before Cailin, had some coffee and I walked Ellie. Cailin awoke, ate and began the day of a typical 8 1/2 month old (her adjusted age). That morning we took her back to the Jefferson NICU to visit her incredible caregivers--to thank them, and to remind them of the miracle they had performed. Working in the NICU involves some desperately sad days, but we'd like to think visits from babies like Cailin serve as a happy reminder of how incredibly wonderful their work is. As I've said before, they are angels here on earth, working miracles every day.

On Cailin's actual birthday--Sunday the 14th--we had a big party. Cailin was largely unaware that she was the center of the day, and frankly the party was for us, for our families, for all those that helped us to get where we are today via countless means--including meals, dog sitting, emails, phone calls, providing a shoulder to cry on and prayer. We wish you all could have been there to celebrate with us. It was a hot day, but once the party started it didn't seem to matter. As you can see from the new pictures, Cailin was her usual happy and adorable self (my biased opinion), although her first bite of cake ended in tears--likely due to a bit too much excitement in the air. See the new pictures at right, or if you're reading this via e-mail, here.

For me the party was also a celebration of my wonderful wife and her courage and determination, which deserve an incredibly large part of the credit for where we are today. A few weeks ago, Lauren and I spoke to a class of first year medical students at Jefferson as part of their medical ethics class. We discussed the challenges of our pregnancy--one that some doctors felt was too risky to Lauren's health to continue, as well as about our NICU experiences. The students asked some interesting questions, and I hope learned something from us that might help them to be better doctors.

It was the first time in a long time that I had thought of those early days when we first learned that Lauren's pregnancy was a risk to her health. I began to tear up (not surprising I have to admit) as I talked to the class about her decision to move forward in the face of risks that included life threatening hemorrhage, preeclampsia (high blood-pressure during pregnancy--potentially very serious), and the fact that she was essentially choosing to allow a pre-cancerous growth to continue developing inside her--beside Cailin. I am still in awe of her courage in the face of all that risk.

Of course Lauren's courage extended beyond her 5 1/2 months of pregnancy through Cailin's 5 1/2 months in the NICU. Lauren was there all day every day--in an environment where family tragedy is an all-too frequent occurrence and stress collects like dense fog. After each weekend there I felt overcome by the place almost welcoming the return to the normalcy of work. Yet she was there all day every day, 7 days a week, comforting Cailin and being the best advocate for her care that any parent could be.

Through all that she continued to pump breast milk for Cailin. Lauren was determined to have a sufficient supply on hand should she need chemo (a distinct possibility arising from the complication of her pregnancy)—although she suggested aloud that she would defer chemo to keep pumping if Cailin needed her to do so. Thankfully, chemo was not required—Lauren passed her final blood test just a couple of months ago giving her the all clear.

In January, one of the doctors told Lauren that it was unlikely Cailin would ever nurse again (Cailin had nursed a handful of times in November before she got so sick in December), as most babies that experience such a long stay in the NICU don’t ever nurse. At that time there was an abundance of breast milk in our freezer and Lauren easily could have followed the doctor’s suggestion and stopped. Of course she didn’t—she continued to pump right up until the day when Cailin did defy the odds and start breastfeeding in earnest, which happened in February, and Cailin has enjoyed the benefits of nursing ever since. To top it all off, Lauren has been working with a non-profit milk bank to donate her frozen milk to other sick or premature babies around the country. We’re expecting the coolers to arrive any day.

So Cailin's birthday was not just a day to celebrate Cailin's miraculous first year, but also a day to celebrate Lauren, who in my view was absolutely mother of the year. Her dedication to Cailin astounds me. So to her I say:
Thank you honey--thank you so very much. Words can never express the gratitude I feel toward the incredible gift of life you gave our daughter.

Incidentally, by far the most popular song from Man of La Mancha is "The Impossible Dream," a perfect way to describe Cailin's first birthday.

Amazing News!

Just a short post tonight to share our wonderful news.

Cailin is 11 months old today and has been home with us for as long as she was in the hospital. But that's not the only exciting news. Tim, Cailin and I went to see Cailin's pulmonologist today for our regular visit (we hadn't been since May). And, based on how well Cailin's oxygen saturation levels had been with a few trials without her cannula, (some planned and some accidental) he recommended that we take Cailin off of oxygen while she is awake!!!

By no means am I complaining here but I need to add that caviat of "while she is awake" because she will still need to wear it whenever she sleeps. We have come to learn that when anyone sleeps, their bodies relax and oxygen saturation levels naturally drop. That happens with Cailin as well. However, with her sick lungs, her levels drop lower than they should. Since no one wants her working too hard, burning precious calories or not getting restful sleep, she'll get the cannula and oxygen back whenever she naps or sleeps at night.

While still not free of the oxygen, we are just thrilled at this news. Cailin will get a break from that annoying cannula for half of her day! And, the thought of being able to just "get up and go" without having to lug around a heavy tank, O2 tubing and the probe around her foot seems almost too good to be true.

Since we think she looks so beautiful without her cannula, we took a few (201 to be exact) pictures of her today. We widdled them down to 10 and you can see them all by clicking on this link or, for those reading this on the blog rather than via e-mail, at the top right of the blog.

But, here is one of my favorites...


As always, thank you for being a part of our journey. We hope everyone is enjoying their summer!

A Joyous "Ceremonial Baptism"

October 5, 2007 was the worst day of my life to that point. A worse day would come, but on that day, it seemed hard to imagine a worse day was possible. Cailin had been with us for just three weeks. I was back at work, and Lauren and I were still adjusting to our new lives as NICU parents.

Cailin had her first surgery that morning--to place a central line to allow easier access to give her meds. That went relatively well, but at 12:24 PM I received a call from Lauren that things had taken a turn for the worse and that I needed to get the hospital. A maniacal drive down the Schuylkill (one of several) delivered me to the NICU not long after.

The news was dire. Cailin was not getting enough oxygen, and despite several attempts to try their most aggressive ventilator (the "oscillator"--which never did work for Cailin despite several more tries later in her hospital stay), they were not able to resolve the problem. To make matters worse, she was "third spacing," which meant her blood was seeping from her veins into places it didn't belong instead of absorbing and delivering oxygen. They had one remaining option; they would "tank her up" with fluids to a point where we could expect her to look like the Michelin Man, and hopefully at some point the third spacing would stop, and she would begin oxygenating well again.

However, the reality that we were presented with was that this approach may not work, and that we should prepare ourselves for the worst--that she might not survive the next 12 hours.

What excruciating news to absorb. We called family and asked them to come--some of whom would be meeting her for the first--and what we dreaded could be the last--time. Lauren and I were determined not to give up on Cailin, but at the same time we had to address our new reality. I called the rector of our church--whom had already been to meet and bless Cailin--and asked if he could come baptise her. He abandoned his Friday evening plans and boarded a train downtown.

Her baptism was the most solemn of occasions. Only Lauren's Mom had arrived, and the three of us all bordered on hysteria. Her attending doctor that day, who gracefully happens to be a member of our church, joined the ceremony at our request. The ceremony was not exactly what one pictures for such an event. We weren't yet able to hold her, so the ceremony was conducted with her inside her isolette. The priest was able to drip a tiny amount of holy water on her head, but she could not be anointed with oil out of fear that it would irritate her paper-thin skin.

We reminded ourselves and Cailin that her baptism was by no means an indication that we were giving up on her, but instead an effort to give her additional strength to keep fighting, and that someday she would have a more typical celebration of her baptism. I referenced the events of that brutal day in my post on October 9 (http://cailinhope.blogspot.com/2007/10/forward-progress-again.html) , but at the time chose not to disclose details, in part because we didn't want anyone reading the blog to think we were giving up.

Obviously Cailin didn't give up. She never ballooned up like the Michelin Man; it seemed that in that early stage of her life she needed extra fluid--and the resulting higher blood pressure, and soon after they began adding the fluid she began to improve. She continued to improve steadily from what seemed the moment of her baptism through the next two months until, on December 8th, she took another severe turn for the worse.

Regardless of the trials and tribulations she faced in December and January, her baptism was a source of great strength to us and, in our view, to her. The two months of progress that followed her baptism allowed her to build the strength and energy reserve to handle the challenges that December and January would bring. It also provided Lauren and me with a much needed respite to enjoy our daughter before the NICU roller coaster would deliver even more difficult tests of our ability to hold out Hope.

Fast forwarding to the present, last Sunday, Juy 20th, the events of October 5th came full circle. We took Cailin to the incredibly beautiful Church of the Redeemer, in which Lauren and I were married, and while she wasn't actually baptised (it's a one-time event), we went through the ceremony excluding only the pouring of water over her head--thus the "ceremonial baptism." And this time she was anointed with oil to complete the ceremony.

It was an incredibly happy event in stark contrast to her actual baptism, and an awesome reminder of how very, very blessed we are by our little Cailin Hope.

Below is a picture of us holding our little angel in her fancy dress, which has been in my family for approximately 80 years, and was worn by all four of my siblings and me. There is also a new album of pictures taken over the last month or so, which can be found here (or here for a slideshow complete with captions), as well as to the right for those reading this on the blog rather than in e-mail.

As for Cailin's current status, she continues to do extremely well. The biggest issue at the moment is that she's not gaining weight quite as quickly as we or her doctors would like--which is preventing further weaning of her oxygen support. While we all can't wait for the oxygen to be a memory--Cailin more than anyone--it's well worth the sacrifice to ensure she's not working any harder than she has to and can concentrate on growing!

Speaking of growing, Cailin is now over 14 pounds. She's doing better with her solids, although when I feed her it seems that more end up on her than in her belly! Speaking of her belly, she's now so good at rolling over from her belly to her back that it's difficult to get any belly time in. She's also sitting up, and doing great with it--with some parental support to catch her when she inevitably loses her balance.

We hope you're all well and are enjoying your summer. We certainly are!

9 Months Old!

A quick update; yesterday Cailin turned 9 months old. As you can see above, she's doing great, and her personality is really starting to show through. She's doing much better with belly time, is starting to be able to balance herself sitting up for short stints, is babbling more and more, and is generally a very happy baby--with overjoyed parents. She's now 13 pounds, 7 ounces.

We had a nice quiet day today--our only venture out to the dog park to throw the ball for Ellie. It was a perfect first father's day!

Happy Father's Day to the rest of you dad's out there--I hope you enjoyed the day as much as I did!