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!

Memorial Day Update

Cailin, as you can see, continues to thrive. The picture above is my favorite, but there are a ton posted in a new album linked at right, or available here.

We're loving parenthood, and have been getting braver about getting her out and about. Our activities have included the March of Dimes March for Babies (more on that in a moment), a visit to the Chestnut Hill Home and Garden Festival, several parties and two trips to Lauren's brother and sister-in-law's house. Cailin seems to love meeting new people and doing new things--it's far preferable to boring days at home!

The March for Dimes Walk for Babies was a big success; I'm thrilled to report that we raised nearly $2,000! The weather was cold and overcast, but Cailin was a trouper, and we completed roughly half of the walk before we called it a day. Despite the weather we had a great time. We thank all of you that walked and / or donated, and look forward to more walks in future years--hopefully with better weather!

As you can see from the pictures, Cailin is getting big--she's about 12 pounds, 12 ounces, and is catching up fast on her peers (which would be babies born around the New Year, when she was due). The week before last she rolled over for the first time from her belly to her back--anything to avoid belly time!

We have hit a slight stumbling block with reducing the amount of oxygen supporting her breathing--the doctors gave us the approval to reduce it by 50%, and while she did great for the first week or so, it seems to have caught up with her and she's been having a little bit of difficulty over the past few nights. We're hopeful it's just a matter of her needing more time and nothing to worry about, but of course when it comes to her breathing the truth is that we're always worried... Such is the price of parenthood, as all of you that are already parents know well!

There isn't much else to report--we're just looking forward to a great summer, as I'm sure all of you are.

Best wishes,
Tim, Lauren and Cailin

Long Overdue Update--Including More Pictures

I'm thrilled to report Cailin is doing great. She's up over 11 pounds now, is eating well, sleeping relatively well (naps are a bit of an issue), and overall thriving. We've put some new pictures on the right ide of the blog page, or you can see them here.

She's still on oxygen, and will be for a good while longer. She's gotten quite good at rubbing her cannula out of her nose--particularly in her sleep, which sufficiently lowers the oxygen in her blood for her monitor to alarm, and for Lauren to wake up and fix it (I wake up sometimes too, but Lauren is closer at hand for the fix!). This is a frequent event--sometimes 4 or 5 times in a night, sometimes what seems like 100, which obviously doesn't make for a sound night's sleep. But that's a small price to pay!

We've gotten brave and taken Cailin on a number of outings. She's been to the mall (on a not too crowded day), to the dog park (although she stayed in the car), and of course to a number of doctor's appointments. Weather permitting, Lauren, Cailin and Ellie (our golden) go on daily walks, the best recipe to get Cailin to actually take a nap. Lauren has also gone to a couple of infant classes, and has signed up to attend a weekly music class. Cailin's favorite part of the class is the other babies, so it's nice to get her out, and we are thrilled to be putting cold and flu season behind us! Perhaps the biggest news is a change in hair color. She seems to be following in her daddy's footsteps, and is shedding her red hair, and it appears to be growing back brown.

We apologize for not updating everyone sooner. As anyone that's gone through having a newborn in the house can no doubt understand, part of the issue has been time. But part of the reason for not posting--at least for me--has been the feeling that Cailin's home life just isn't quite as interesting to everyone as NICU life was--things are kind of, well, normal. And of course normal in this case is really, really good!

The blog was a tremendous relief for us when Caili was in the hospital; it allowed us to express emotions to all of you that we didn't share much outside of here. And it gave us the chance to try to give you all a sense of how trying it is to have a child in the NICU. But, thankfully, that's not us anymore, and somehow regular old baby updates don't feel important enough. Fortunately for us, we just don't have as much drama to report!

Anyway, one thing I do want to share with all of you is how incredibly blessed we feel. Lauren overcame incredible odds and risks to get to September 14th, and then Cailin took her Mother's gift and ran with it. Having her home still takes my breath away when I stop and reflect--particularly in light of the fact that some of our friends are still riding the NICU rollercoaster.

One family in particular has been in our thoughts often lately; their son was born 9 days after Cailin, and was due about 9 days after she was due as well--another 24 weeker. They were at a different hospital, but we had the great pleasure of meeting them when their son was transferred to Jefferson in December for eye surgery. He was transferred back to their home hospital after a few weeks, but we've stayed in touch with them. At the time we met, both babies were having their troubles, but he seemed to be doing pretty well. But over the past several months while Cailin got breaks, they got more setbacks, and their son is still in the hospital. While we haven't heard from his parents recently, not a day goes by that we don't think of their ongoing struggle and pray for them to be able to bring their little boy home soon, and of course in good health.

That brings me to our plans for this upcoming weekend; we're doing the March for Babies, which of course benefits the March of Dimes. I didn't know much about the March of Dimes before, but I've since learned that they are truly a wonderful organization, and all of us have much to thank them for. For example, they helped to fund Dr. Jonas Salk's research, which of course resulted in the polio vaccine. More relevant to Cailin, they also helped to fund research into a lung treatment called surfactant replacement therapy which became standard treatment for micro-preemies in 1989, something without which 24 weekers like Cailin would have virtually no chance of survival.

So, if you can, please join us on our walk this Sunday, April 24th. Call us for more information, or go here to learn more.


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

Still Seems Like A Dream

It's been over 2 weeks since Caili came home and we still can't believe it's true. Some days we wake up and find ourselves amazed that she is home. Especially on the weekends. It's just so wonderful having her here with us.

And Caili really is doing great. She is eating well ---she's up to 9lbs 4 ozs last time we checked. She's sleeping well --- if you can believe it she sleeps for a 7 hr stretch and then a 4 to 5 hr one after that. She also seems to be having a lot of fun. She has lots of play mats and toys which keep her busy and seem to make her very happy. She moves excitedly on her little mats and takes it all in. She's mesmerized by all the sights and even occasionally smiles at a toy blow fish or a fuzzy elephant:



She also loves car rides and walks in her stroller. In fact she's been on several long walks with the nicer weather we had. Ellie, while a bit confused by the stroller, seems to enjoy the outings as well. All in all, things couldn't be better! A few more recent pictures can be seen at right, or, for those reading this via e-mail, here.

Thank you for all of your warm wishes and incredibly sweet guestbook entries. We have really enjoyed reading them and I know Caili will some day too. If you haven't yet, please sign our guestbook. We love hearing from you.

On a separate note, Tim and I have decided to make a special effort to support the March of Dimes this year. As you may or may not know, the March of Dimes' mission is to improve the health of babies by preventing birth defects, premature birth and infant mortality. Some of the critical advances in research and technology that helped Cailin to be where she is today, where made possible through research funded by the March of Dimes.


The March of Dimes' largest fundraising event is an annual walk that takes place in various places throughout the country. The event is called "The March for Babies" (formerly the March of Dimes Walk). This year, the Philadelphia walk is taking place on April 27th.


We have created a team for the walk called Team Cailin Hope. Tim, Cailin and I will be participating in the walk and we would love for anyone and everyone who is interested to join our team. It starts and ends at The Philadelphia Museum of Art and while it is a 6.5 mile walk, should be lots of fun. We can't wait to help a great cause and celebrate Cailin's journey at the same time!


If you can't or don't care to walk, you can also make a donation to our team. To join the team or make a donation, visit our Team Website at http://www.marchforbabies.org/500437



Thank you again for all of your support and we'll update you again soon!

Counting our Blessings

What a day last Friday was. That morning it seemed nearly impossible to believe that we would soon be driving away from the hospital as we had done countless times over the past 5 1/2 months, and this time Cailin would be with us. The emotions were overwhelming and surprising. Most odd was a slight sense of sadness, which I suppose was masking fear. It was nice having doctors and nurses at your disposal to ask questions, retrieve a bottle, reassure you that Caili is just fine. Leaving that safe environment was frightening.

But leave we did!
It was such a joy to drive her home! And it's continued to be a joy. She's up to 8 1/2 pounds as of yesterday, and to us she's seeming like a normal term baby with the exception of her monitor and her canula--which keeps her on a 7 foot tether to a tank of oxygen. She's sleeping well, eating well, doing well. Having her home seems almost too good to be true! We've published some homecoming pictures here.

Looking back on the the last five months, it's hard to believe that we've finally reached this point of the journey. There were some incredible lows, that even now make me gasp for air to think about. Yet she is home and thriving, despite the odds that were stacked against her from the moment she was conceived.

We are so fortunate, and that was never more clear than now, as we recently learned that another of Caili's neighbors from her first days in the NICU lost her struggle with life earlier this week. Her parents were strong, determined, inspirational. Our hearts break for them. Their little angel, Christopher and Cailin were side by side in Jefferson's NICU for the first several months of Caili's life, along with another baby boy that has since gone home, all 24 weekers. They were the first three families we met in the NICU, and they all offered incredible support, as they had already been there for months prior to Caili's arrival. The fact that two of those three families never got to take their babies home is incomprehensible. Both were in the NICU more than half a year; so much time, so much heartache.

Obviously there is no answer as to why our baby has come home to us when too many other parents we've met along the way have been deprived of that joy, robbed of their beloved children so quickly after their arrival. It's not fair, and truthfully there is little to distinguish our situation from theirs. Like them, we were blessed with the best care available, wonderful support and an incredibly determined baby. We were just lucky.

In addition to the sorrow, our time as NICU parents also brought incredible wonder to our lives. The good in people has never been so plainly obvious: all of you and your support, prayers, kind words, favors, gifts, etc.; the dedication and skill of Cailin's caregivers at Jefferson and DuPont; the inspiration of other families we've met along the way; the strangers making dinner every night for the families like us at the Ronald McDonald house; and on and on. The kindness we've experienced has been astounding.

As we read the messages left thus far in Cailin's guestbook, it's moving beyond words. To know that so many people are in her corner, praying for her, rooting for her, sharing in our effort to will her to good health; it's truly awesome. This is a time for counting one's blessings, and ours are innumerable, all of you being chief among them.

Thank you, thank you, thank you. May God Bless all of you as He has blessed us with Cailin. And may He watch over those that never got to go home, and be with their families as they attempt to continue on through their unimaginable loss.

Caili’s Coming Home!!

It's true ... Cailin is being discharged on Friday...this Friday!

Since our last post, things have just been going so well. Caili has continued to eat all of her feedings by mouth and gained weight in the process (it's been 2 weeks now). And, she has tolerated a lot of weaning of her oxygen support requirements. Actually, as of yesterday, (Tuesday) she would technically be ready to go home. But, the doctors want to give her until Friday to be safe and see if they can wean her oxygen support a bit further. Even if they can't wean her further, that won't prevent her from going home. Really, she just needs to pass the "car seat test" (sit in the car seat for an hour without respiratory distress) and continue to do as well as she has been and she can go home on Friday!

Caili will go home with several prescriptions, a monitor and oxygen. According to her pulmonologist, she may need the oxygen support for the next 4-6 months. But, we feel so fortunate to have only this minor inconvenience given all that she has been through. Tomorrow, we’ll have a large oxygen tank and lots of long tubing delivered to use while at home. And, they’ll provide us with several portable tanks for trips out of the house, like to the pediatrician's office or to walk Ellie!

I'm sure you can only imagine how elated Tim and I are to be finally taking Caili home. Of course, we're a bit nervous as well. But, we feel ready and excited to be at home, together as a family with Caili, Ellie and Kotie (our cat)! And, thankfully both my mom and Tim's mom are retired so we'll have some extra help for the first few weeks.

On a different note, Tim and I have been so touched by all of you who that have been following Caili's journey. On a weekly basis we would get calls or emails about our posts or requests to update the blog. It was also a weekly occurrence to learn of someone else who started reading the blog or added Caili to their prayers or even their church's prayer list. Friends, friends of friends, parents of a friend, co-workers of friends, etc. It's been amazing. Some of the stories we could tell would amaze you. While we can't see exactly who has been accessing her blog, we can see that it has been accessed by over 1,000 "unique visitors" from countries all around the world. We often get emails from people saying, "you may not remember me," or "we haven't met but...". Again, amazing and so very touching to us as well. We created the blog to keep our family and friends updated. But, we had no idea it would mean so much to us in return. Your comments and personal emails have really kept us going. And, we can't wait to tell Caili about it someday soon.

To help Caili know who was following her, we created (sorry...a little late) a guestbook. We were hoping each of you could sign it to say hello, explain how you’re connected to Caili or Tim and me, and post any thoughts or wishes you may have.

You can choose to post a public or private comment (there is a “private” checkbox”). But, we should mention that in order to prevent spammers from clogging up the guestbook we have to approve all posts, so your message may not show up for some time after you send it. The guestbook link can be found on the right menu, or, for those reading this via e-mail, you can view the guestbook here, and sign it here. Incidentally, we’ve also posted a new album of pictures, which you can see here.

And now, we need to get packing! Thank you again for all of your friendship, kindness and support. Your emails, comments, phone calls, acts of kindness and just knowing you cared helped us in more ways than words can describe.

Wish us luck and we’ll update you next FROM HOME!!