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!

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!!

Eating, Growing...Soaring

Caili is soaring. Lauren and I are both reticent to speak or write about it because it feels too good to be true, and we live in fear of another (always possible) setback. However, one of the many things that this experience has made clear is how important it is to enjoy the moment, and this moment is good. Really, really good.

First an update on the impedance test—the main test for which we came to DuPont. As Lauren mentioned, the test is designed to measure both acid and non-acid reflux, and was hoped to provide a definitive answer on the question of aspiration, which the previous testing suggested wasn’t an issue. Caili underwent the 24 hour test--which consisted of a second tube (in addition to her feeding tube) routed to her stomach with some sort of wire and electrodes that measure the pressures in her esophagus which are in turn recorded by a little monitor in her crib. Unfortunately, the monitor had some sort of issue that prevented the results from being read. It's been sent to Phoenix for a recovery attempt, but we're guessing results will never be known.
On the day before the impedance test, we were allowed to feed Caili a small amount of milk by bottle, which she loved. When the test was over on Tuesday, they let me try giving her a bottle with her entire feed, which she joyously ate in full. Lauren got to do another feed by bottle that night, and again Caili loved it. Watching her eat is actually amazing; the act of eating is extremely hard work for her given her sick lungs, and she has to periodically stop and catch her breath. She pants like a puppy-dog during this "catch-up" breathing which is cute, frightening, and just a little sad--eating shouldn't be so much work!

Early Wednesday morning, Caili took charge as she has done countless times before; she decided that she'd had enough of her feeding tube, and pulled it out herself. Given how well she had handled the feedings to that point, the doctor decided she could eat all of her feeds orally and changed her feeding orders to "ad-lib," meaning she could be given a bottle whenever she seemed to want one. And the decision was made to go without the feeding tube until it was needed--if it was needed.

Even though it's been tough work, since Wednesday AM, little Caili has eaten every ounce of her food herself, which is a joy for all of us. She's even been able to gain weight while doing so; as of this morning she's just over 7 pounds, 5 ounces. The feeding tube has not been replaced, and she's doing so well that at this point they don't intend to repeat the impedance test even if the results cannot be recovered.

Of course the remaining issue is the level of breathing support she continues to require, which is beyond a level at which she could leave the hospital. They're slowly weaning, and the hope is that at some point in the not too distant future she'll get to the point where coming home will become an option. She was nearly at that level of support in early January before the last setback, so we're optimistic that she can get there again--maybe even before spring!

Settling In at DuPont

While my first night with Caili was wonderful in many ways, it was still a tough night for both of us due to those awful long prongs DuPont uses for the CPAP. They really upset Caili the first time they went in and unfortunately every four hours they had to be removed to be suctioned and then reinserted. It was a grueling night for both of us.

But Tuesday morning brought great news. Caili had convinced the doctor and nurses that she would not be pleasant to deal with if they kept putting those long prongs in her nose. So the doctor recommended trying a similar system to what she was on at Jefferson. While more comfortable (just the small cannula) it is less support than CPAP. Thankfully, Caili was able to handle it.

As the week progressed, Caili continued to allow them to wean some of her support and was really settling in. And why not...her new room is just great. Because it is a private room, we can control the amount of noise, light and stimulus. It has really seemed to make a difference in her overall disposition. She is already calmer and more tolerant. As for me, I am thrilled to report that I too have really settled in. Because it is a private room, there are so many more options for me while I am with her. As you read from Tim's last post, our room has a pull out couch that I can sleep on at night or nap on during the day when Caili sleeps (she doesn't sleep much at night). It has a land line phone that I can use (or my cell) to make calls, there is wireless Internet access (I’m watching her sleep while I type this post), a flat screen TV and storage space for my personal items (I saved a few drawers for Caili too). So while my focus is attending to her needs, when she sleeps, I too can now sleep or catch up on things like email and phone calls. In addition to all of this, because I am a nursing mom, they feed me breakfast, lunch and dinner for free in the hospital's cafeteria. Or, Tim and I can eat for free at the wonderfully accommodating Ronald McDonald house down the road.

As for the testing and answers we came here for, three of the four tests were done this past Thursday. And, while it was a bit scary since they had to put Caili under and put her on the ventilator, we were thrilled with the end result and how quickly she came back off the vent (once again, Caili extubated herself). It seems that Caili does not have any airway obstructions and no major irritation in her esophagus or small intestine (indicating reflux). The tests did confirm that Caili just has very immature and very damaged lungs (from the early weeks of being on the ventilator to keep her alive). And while that may not seem like good news, it actually is to us. It means that with time and good nutrition, Caili will grow new lung tissue and slowly get stronger. That time may be months but she is well worth the wait. And, given this news, we are so happy we have these new accommodations to make that time pass more quickly.

We have one more test on Monday to finally rule out non-acid reflux. It is a 24 hour test and by Wednesday, we should know the results. If the test comes back negative, the plan is to slowly start feeding Caili by mouth once again. I know that this will bring Caili a lot of pleasure and only help with her overall satisfaction and ability to sleep more soundly.The only downside of our move to DuPont is that Tim has been running himself ragged driving from work to home to take care of our dog Ellie, then to the hospital and back home again each night. So, to make things easier for us, we decided to send Ellie to Tim's sister’s house for a while. She has been so good for us throughout this past year and we will miss her terribly but not having her at home will be so much easier for us (especially Tim). It will allow us all more time together since Tim will be able to stay in Delaware, either here with Caili or at the Ronald McDonald house and commute from here to work. I plan to go home once a week to pet the cat (poor Kotie).

While we have no end in sight, we are so thankful that Caili is currently doing well, that the tests didn't show anything which would require major surgery and that we are in a private room where we can all feel more like we are at home.

We posted some new pictures and you can find them in the top photo album on her page. Click on the mini picture to see them in full size. You won't believe how big she is getting. She’s now just shy of 7 pounds. Her smile gives us a kind of happiness we’ve never experienced. It’s worth every bit of heartache we’ve been through.

Thank you for all of your well wishes and support. Hopefully we’ll have some more good news next week.

First Night With Mommy

I'm thrilled to report that Caili's trip went very well. It was delayed until this afternoon (Monday), but she was all settled into her beautiful new private room by about 6 PM. DuPont's NICU is brand new--the official grand opening was last Wednesday. Caili's room is huge, and of course everything is new. Just as with Jefferson, the people there all seem to be wonderful. Of course we've gone from being long-timers that know pretty much everyone to being the new kids on the block that know no one, but everyone has been very welcoming. We just feel a little out of sorts.

Caili seems to have weathered the trip extremely well. They've already been able to wean some of her medication, and while the new CPAP equipment--long prongs pushed deep into her nose--will take some getting used to for all of us, overall she seems to like her new digs.

And Mommy loves one aspect in particular; as it turns out, the parent's bathroom at the NICU just opened, and thanks to that, they now officially allow one parent to spend the night. Caili's room has a fold-out couch, so Lauren is at this very moment spending her very first night ever with Caili (not counting the 24 weeks of gestation of course!). I'm thrilled for them both, and sorry to be missing it.

There is no word yet on when all the tests will begin, but we're very hopeful they'll be later this week, and that soon we'll have some answers that will help us to get back on track to bringing Caili home.

As always, thank you all for your ever-continuing support and prayers!

Slipping Backward, Moving Forward

It’s been a tough week. Last Sunday Caili’s breathing began to get more labored, to the point that doctors were beginning to fear that she was nearing the end of her energy reserve. At that point she was still on the high-flow nasal cannula, but we continued to fear another backward slide. Last Monday they reverted back to CPAP, which Caili hates due to the mask she has to wear, and the pressure of the prongs that are strapped against her nose. It’s far from comfortable.

Because of Caili’s age and her pulmonary hypertension, it’s more critical than ever that her blood stay well oxygenated. They used to accept levels in the high 80’s or low 90’s, fine for premature infant not yet supposed to be out in the world (we’re told that the mother has used much of the oxygen in the blood that reaches a baby in utero, and thus premature infants are used to lower saturations), but that’s no longer acceptable now that she’s essentially a 5 week old. So, Caili’s target saturation is now 95%. Note that a healthy term infant as well as an adult saturates at or near 100% all day long.

So, when Caili was switched back to CPAP on Monday all was good for awhile. She was saturating well, and her breathing was more relaxed. But on Tuesday evening Caili once again came unraveled. Now matter how much oxygen they gave her, she couldn’t reach her target saturation. As I headed to the hospital, the doctors asked Lauren to leave Caili’s room so they could intubate her. We were utterly devastated. Going back on the vent at this late stage seemed impossible to imagine. We were supposed to be on the track home by now.

I met Lauren in the lounge, and we began to prepare ourselves to see our daughter intubated yet again. Luckily, our preparations were unnecessary. Caili’s doctor sought us out to deliver good news; Caili’s nurse had found a position that seemed to be working for her, and she was still on CPAP. She was breathing 100% oxygen (which in itself is not a good thing), but her oxygen saturation was sitting at 95% as it needed to be. She had avoided intubation, at least for now.

We sat beside her crib as she slept, entranced by her monitor, doing our best to will the oxygen saturation to stay at 95%, or, dare we hope, rise higher. We left at 10 feeling that intubation was inevitable. We’d been through this before; in December we had left for home with her on CPAP but teetering on the edge of intubation, and that night had ended with her on the vent. We expected a call in the middle of the night reporting her intubation. There was no call. Our ritual call immediately upon awakening on Wednesday morning revealed that she was still hanging in on CPAP, although she was still on the ragged edge. Our little girl is determined. Later that morning they decided that the cause for this extreme downward slide was potentially a bad reaction to a drug they had administered to help with her pulmonary hypertension, and the drug was discontinued. She continued to hang in there.

By Wednesday night she was improving. They were able to slowly reduce the amount of oxygen she was breathing. The specter of intubation vacated, but our stress remained. The amount of oxygen she was breathing was still too high, she was still on CPAP, and answers on why she had slipped backward from mid January were still not to be had. Her pulmonary hypertension alone doesn’t explain this backwards slide. She doesn’t seem to have a cold, which had been our fear. On Thursday morning the doctors tried another test that might show aspiration—still the leading theory of the cause of her difficulties. The test showed nothing abnormal. It was time to regroup.

The pulmonary specialist came in to see her again on Thursday afternoon. He recommended another test that would more definitively determine the level of her reflux. However, this test is not performed at Jefferson. She would need to make a trip south—to the DuPont Children’s Hospital in Wilmington, Delaware. The other doctors agreed that this was the best next step—the best way to hopefully get answers, and get back on a track that would lead to taking Caili home.

The process moved quickly, and on Saturday we learned that Caili will leave Jefferson for the first time on this morning, via ambulance, and will travel to Wilmington. As we’ve seen when they’ve taken her out of her room for various tests, moving her is no easy task—it requires a ton of equipment and at least three people to accompany her. Seeing her moved is a stark reminder of how fragile she still is. We are more than a little anxious about a drive 45 minutes south.

Also, we are extremely sad to leave Jefferson, which has truly become our home away from home. The doctors, nurses, respiratory therapists and the many other people that have been involved in her care have been absolutely amazing. They have given our daughter life, and provided us with hope, console, inspiration and friendship. From the moment that we first saw a baby that we knew go home after a long stay in the NICU, we dreamed of that walk down the hall with Caili in a stroller, with the doctors and nurses responsible for delivering that joyous moment sadly but excitedly congratulating us and wishing us well. Leaving in an ambulance is not what we imagined. We’re sorry that all those responsible for her progress to date may not get to participate in that day when we finally do take her home.

It is possible that Caili will go back to Jefferson after the testing is complete, but at this point it seems more likely that the remainder of her hospitalization will be at DuPont. And that certainly isn’t bad—DuPont’s NICU is apparently brand spanking new, all the rooms are private and parents can visit 24 hours a day. No longer will the end of visiting hours force us to leave Caili crying, or worse yet struggling to breathe.

I do worry about Lauren—I fear she’ll never leave Caili’s side and will try to live without sleep. But she will be able to sleep close by—she’s planning to live in the Ronald McDonald house that’s across the street from the hospital. Unfortunately I’ll have less time with Lauren and Caili—Wilmington is at least twice as far away from our house as is Jefferson. But we need answers, and everyone is hopeful that the tests they can run at DuPont will provide them. Hopefully this next step in Caili’s journey will be a short stint before she finally comes home to us.

If you would, think of Caili this morning on her first excursion, and join us in praying that this will be a positive step toward bringing our little angel home.

The Light's Still There, but the Tunnel's Now Longer...

Where to begin...

Since our last post, things were not getting any better for Caili. Last Saturday, she was on CPAP but very agitated by the contraption which was making matters worse. So Sunday morning they tried the nasal cannula again but with little success. She was still breathing very fast and requiring more oxygen support. Sunday evening they tried her back on CPAP. Hints of intubation and the vent were lingering in the room. Something no one wanted to see again.

On Monday AM, the doctor that ordered the test to examine the blood vessels in her lungs the week prior was back on rotation. As we wrote about in our last post, she had been concerned that a condition Caili had back in December called pulmonary hypertension had returned.

Although we mentioned in our last post that the test showed she did not have this condition, the doctor on rotation was not convinced. She spoke with the cardiologist again this past Monday AM and after reviewing not only the test results but Caili's history and current symptoms, they concluded that she was in fact suffering from this potentially life-threatening condition. The doctor explained the treatment to us and that they needed to start it right away.

So what is pulmonary hypertension? Well, a brief layman's summary is that it is high blood pressure in the arteries that supply the lungs (pulmonary arteries). The high BP causes the vessels to constrict and their walls thicken, so they can't carry as much blood and therefore oxygen to the heart and body. The immediate effect is that Caili's blood isn't as well oxygenated and she works harder to breathe. The long term (and life threatening) concern is that this causes the heart to work harder and can eventually cause it to fail.

Since last Monday, Caili has been more stable and seemingly more comfortable. The goal is to wean her of the treatment slowly. Unfortunately, in order to truly have the best long term outcome, the plan is to continue with this treatment for at least another month, maybe more. So, while this is not good news, it does seem like we have caught it in time and simply need to let the condition resolve with the current treatment plan and time.

In the mean time, a pulmonologist from Dupont who had seen Caili when she was very sick in December came back for another visit and opinion. He agreed as well with the pulmonary hypertension diagnosis but also expressed his concern that Caili is still micro-aspirating milk into her lungs. Even though we had the milk scan test done which showed she didn't have reflux, it was just looking at a 4 hour time period. The pulmonologist feels that this micro-aspiration is occurring in tiny amounts over time. He is basing this opinion on her signs and symptoms and the fact that the xrays show little healing even though Caili is getting bigger and growing more lung tissue.

Given this latest set back and diagnosis, Caili is once again only being fed over a longer period of time via a tube in her nose that goes directly into her stomach. As the doctors explain, we can't afford to fill her belly all at one time (by bottle or by nursing) and take the chance that she does aspirate milk into her lungs. So, the plan is to do another test that looks at whether or not she has reflux over a 24 hour period. I hope that will take place this week but is very dependent on how Caili's breathing is progressing.

It has been a really tough week filled with such feelings of fear and frustration. But, I force myself on an hourly basis to see the glass half full. Caili is still fighting with us and doing so well in so many other ways. She has very sick lungs and needs some more time to heal. But, we are ever hopeful that she will lead a happy life once we get out of this crisis.

On a lighter note, Caili is now a little over 6 pounds and is doing a lot of what you would expect for a full term baby. She is actually 19+ weeks old but really 4 weeks adjusted (how old she would be if she was born on her actual due date). She is only expected to do things that a 4 week old would be doing. She is starting to focus on people when they talk to her, follow objects as they are dangled in front of her, clasp her hands together and smile (when she has gas pains). She is heavy in my arms and really starting to fill out. Tim and I love spending time with her and can not wait to get her home.

I am sorry for such a long and technical post. But, it is hard to explain without much detail how we can go from a post where we feel we are getting so close to coming home to a feeling of many more weeks ahead without doing so.

Please continue to pray for all of us as we take yet another difficult step in our journey.

Good News Abounds, Yet Still A Step Backward

After more than two weeks of thriving on her high flow nasal cannula, on the lowest levels of support Cailin's ever needed, Cailin took a step backward at 5 AM this morning and is back on CPAP. Her breathing had become labored on Monday of this week--she was frequently breathing over 100 breaths per minute when 40 to 60 is normal for her. Her oxygen saturation (the amount of oxygen in her blood) had stayed very good--until last night. They had tried increasing the "flow" of her cannula, increasing the oxygen, and at 5 AM decided CPAP was required. It sounds like she's doing well on it thus far.

The fast breathing had coincided with the return of oral feeding, which of course had everyone fearing an aspiration issue. So, they scheduled a test called a milk scan in which they combine milk with a radioactive isotope that they push into Caili's stomach via her feeding tube so that they can monitor where the milk goes on a nuclear scan. To do this, she had to be moved to the nuclear medicine area (she went to nuclear medicine for the "swallow" test they ran week before last too). Moving her is an ordeal--according to Lauren who saw it, you would think she was desperately ill to see all the equipment they keep at her side to ensure a safe journey. It's also exhausting for her.

They planned to run two tests on Thursday, one with a small volume of milk and the second with her full volume (2 ounces). The first test when fine, but when they transported her back to nuclear medicine for the second round of the test, she hadn't sufficiently digested the milk from the first round to start the second. So, they transported her back to her room and told us they'd have to wait until Friday. Yesterday they did the test with the larger volume, which required an initial transport for the test and a follow-up transport several hours later to see if any of the radioactive molecules had found their way to her esophagus and / or to her lungs by way of reflux that Caili then aspirated. Not only had she not aspirated anything, but her reflux is so mild that they can now stop treating it with medication. So, once we resolve the current respiratory issue she can start eating at will.

Caili also had a test to check the blood vessels in her lungs yesterday, and all looks well there, which isn't surprising but certainly is good. So, as one of the doctors said to us, Friday was a great day on paper, just not a good day for her in terms of her breathing.

What's causing her to have a difficult time breathing once again? We don't know, but fear a cold, which given the state of Caili's lungs would be serious. Thankfully we're told she's strong enough now that it shouldn't be a giant setback like the one that occurred in December. We certainly hope that proves true, but obviously we're frightened. We'll keep you updated on her progress, and obviously we appreciate all of your continued prayers for her.

One final bit of news to close this post. As some of you know, Lauren's pregnancy complication was that she conceived twins. The twin was a "molar pregnancy," which is a non-viable pregnancy that results in rapid growth of placental tissue--which, left untreated, can become cancerous. Molar pregnancies are uncommon, and in combination with a healthy twin are nearly unheard of, and rarely are they continued. Most doctors in the US feel it is too risky to mom and the baby to continue. Thankfully there is a group of doctors in the UK that have been studying this rare situation, and their studies and the personal encouragement of one of them via e-mail along with great support from the doctors at Jefferson gave us the hope we needed to move forward. I continue to be amazed at how selfless and courageous of a decision that was for Lauren.

Continuing meant not only risk of an early birth, but risk of severe and potentially life threatening hemorrhaging (which is ultimately what caused Caili's early arrival), and the risk of a disease called persistent trophoblastic disease (PTD), a disease that can turn malignant. PTD means the molar tissue won't stop growing after removal (it could not be removed until Caili was delivered), and is 100% curable--with chemotherapy. PTD can easily be monitored as it has a marker, which happens to be the same hormone that indicates pregnancy, hCG. Well, we're thrilled to report that Lauren's hCG has recently returned to normal, which means that she doesn't have PTD and almost certainly will not require chemo.

Thank God. Lauren's proven her incredible courage and will--no further challenges are required. Clearly she passed her courage and will on to Caili, who has faced more than enough tests herself. We yearn for the day when her challenges will be the typical ones of growing up and not a daily fight for such basics as breathing and eating.

Eating Again!

A quick update; Caili's test on Tuesday went well. It showed that she was very "coordinated" with her swallowing and that she did "protect" her airway. So on Wednesday they removed the tube to her small intestine and replaced it with one that goes into her stomach. Now instead of feeding her constantly they're now feeding her every 4 hours, and running the feed over 3 hours, giving her one hour's rest before they start again. It's still not as satisfying as eating her full feed over a short time like would be normal, but she certainly is quite a bit more content...unless it's that one hour where she's not getting any food! Lauren calls that the "witching hour."

After a day of monitoring the feedings in her stomach, they were comfortable with feeding her by mouth, so on Thursday they fed her a small amount from a bottle. Caili drank it down like a pro, but wasn't pleased when she realized that was all she was getting. She drank the same amount yesterday (Friday) and seemed to enjoy it even more. The plan next week is that they will steadily increase both her frequency and quantity.

As for her respiratory status, not only is she still on the high flow cannula, but her oxygen flow is down to the lowest level ever--the lowest they go on the "high flow." We're astounded by her strength and overjoyed by it.

While this has been a trying couple of weeks for both Caili and Lauren--who now spends every minute possible at the NICU--it is obviously critical that we take the feeding process slowly to be safe. Hopefully the weekend will continue with good results and we'll have even better news next week.

Have a wonderful weekend!

Stable, Growing, and Desperately Hoping to Eat

In the time that has passed since our last post, Caili has been gloriously stable. Her first stint back on the high flow nasal cannula didn't last long, and she was back on CPAP on New Years Day. That was fine by us since she continued to do extremely well once back on it. And on Thursday night, she was again doing so well that they put her back on the high flow, and she's remained on it since then. Her breathing has truly never been better, which is a tremendous blessing. Here's a picture from Sunday:



However, Caili isn't her happy self. At times she is truly inconsolable. No one seems to be able to tell us for sure, but we're convinced the explanation is simple; we believe that she's constantly hungry. She is always rooting, searching for food, wanting to eat. Her feeding tube routes a truly constant trickle of breast milk past her stomach directly to her small intestine which simply doesn't make her feel full, satiated, content. At times her drive to eat seems manic, as if she feels she's starving, and she's nearly impossible to comfort. It's heartbreaking to experience.

Tomorrow (Tuesday), we hope to get back on track to resolving the problem. They'll be conducting a test that hopefully will help to determine the extent of her reflux problem and whether she able to "protect her airway" or if she is aspirating into her lungs. Of course, we can address reflux with medication but aspiration will more difficult to address. If all goes well and the study concludes she does not aspirate, they will start with moving the feeding tube out of her intestine and back to her stomach. And if that goes well, the next step would be allowing her to actually eat by mouth again. We obviously want to go slowly so that we can minimize the risk, but were excited and optimistic that she'll do well, and that soon she'll get the doctors approval to nurse again.

Until then, we're trying to focus on how well she's doing and thanking God for giving her the incredible strength to fight through such difficult challenges.

Please keep her in your thoughts and hope that the test results allow Caili to once again be fed in a more natural and fulfilling way. We'll update you later this week with the outcome.