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!
