March 31, 2006
Dear Family & Friends:
As some of you already know, our amazing little angel Caitlin Elizabeth passed away on Friday night, less than 24 hours after major surgery to repair her GI system. She was 130 days old.
Most, if not all, of you were recipients of our last e-mail celebrating Caitlin’s 100-day Birthday, back on March 1. At this time, I wanted to take the opportunity to fill you in on what has happened since.
Basically, after her second bout with Necrotizing Enterocolitis (NEC), Caitlin was improving, and we looked forward to taking her off antibiotics, resuming feeding her with formula (which both happened in the first week of March) and hopefully taking her home with us soon thereafter.
However, once the doctors began to try and feed her again, Caitlin was having “residual” formula in her stomach that was not being digested. In addition, Caitlin’s blood platelet count was chronically low—which can be an indicator of persistent infection.
At this time, the second week of March, Caitlin went back on antibiotics. The doctors then conducted numerous blood, urine and spinal fluid cultures to search for proof of an infection. During this time and until her passing, Caitlin never had a positive culture; meaning no infection could ever be proven or found.
Some of you may be asking, why do they resume antibiotics before getting results of the cultures? The answer is that if they wait the 24-48 hours to see the results of a blood culture before treatment, it is, most times, too late if the culture is positive
After about a week of additional antibiotics and persistent low platelets, Caitlin came off antibiotics again, and attempts to feed her this time were met with Caitlin vomiting almost everything she was fed. In addition, her respiratory status declined, and she was eventually moved back to a ventilator. During this time, she also had once incident of internal bleeding, likely somewhere in the GI tract.
After the bleeding incident and move back to the ventilator, on Saturday, March 18, Caitlin was again put on antibiotics. There was some fear she could be coming down with a third episode of NEC.
The following week, we talked to many people: neonatologists, surgeons, infectious disease specialists, GI specialists, nurses, etc. There was disagreement among the medical professionals as to whether Caitlin did have some sort of hidden infection and whether surgery was an option. We, of course, had our opinion, as well.
To that end, a meeting with everyone involved was scheduled for March 23, to air any and all disagreements, and then come up with a plan that took and aggressive approach to finding out what was wrong and fixing it.
The day prior to the meeting, an attempt to remove Caitlin from the ventilator failed. She was working too hard to breath on her own.
The meeting on March 23 was productive, in that a clear plan was put into place that we all hoped would lead us to an answer.
First, Caitlin was removed from all IV-delivered antibiotics. This was something we pushed for, since infection had never been proven, and continuing antibiotics when she really didn’t need them could only lead to more problems. The only medication she still received was an antibiotic sent via tube right into her stomach to keep the bacteria levels relatively normal and prevent overgrowth.
Second, the neonatologists would aggressively try to feed Caitlin, and not be thrown off by just a little residual or some early vomiting.
Third, if she failed to feed without vomiting, a series of tests would be done on her GI tract—upper and lower—to determine if there were any blockages preventing proper absorption and digestion, or if there were any sources of hidden infection like an abscess, or any scarring/inflammation that could mimic infection in that it could cause platelets to drop.
Well, Caitlin vomited terribly all night on that Thursday when the attempted to feed. So, a lower GI study (barium-enema) was scheduled for Friday and an upper GI study with dye contrast was scheduled for Monday, March 27, to search for blockage.
The lower GI study came back fine. The plumbing was connected. The upper GI study was a different story. Caitlin had a blockage somewhere in her intestine, and possibly other related issues that they could not see definitively on the study.
At this point, the options were: forgo surgery and have Caitlin—who had been on liver-damaging, IV nutrition far too long—probably live another few weeks or months before she died of liver failure and/or massive infection, or we could opt for major surgery that would give our tough-as-can-be little girl the opportunity she absolutely earned, to have a procedure that was the only way to restore her ability to eat normal food and have a shot at a normal life.
To Michelle and me the choice was clear. Caitlin was scheduled for surgery on Thursday at 1pm.
On Thursday, Caitlin’s surgery was delayed a bit, and she entered the OR at 3:15pm. What the surgeons found was what the chief pediatric surgeon described as the worst adhesions (her intestines stuck to themselves and surrounding organs) that he had seen in 25 years. For the next 9 hours or so, the surgeons chipped away at the adhesions, and then reconnected Caitlin’s intestines. She returned to her room at the NICU at just short of 1 o’clock in the morning on Friday. She had lost a lot of blood, and had to be given multiple transfusions throughout the procedure.
The surgeons explained that the operation—which we all knew would be difficult going in—was far more extensive than they could have imagined going in. He said that Caitlin’s ability to survive the surgery was amazing, and that the next two weeks would be critical. He did feel that if she made it through, that her GI system—while not perfect—would be able to likely function normally within the confines of a strict diet.
Michelle stayed up all night with her.
Around 7:30am on Friday morning, the nurses came to our room to tell us we needed to come to the bedside. Caitlin’s heart rate was dropping. She was given some medicine, and she rebounded, but she was otherwise unresponsive.
We spent much of the day talking to her, kissing her, and touching her in between talks with the doctors.
At around 7:30pm, Caitlin’s heart rate dropped again, and actually stopped for about eight minutes. They were able to bring her back. After this, Michelle and I spent some private time with Caitlin, and she—now off pain medicine— actually opened her eyes and looked at us for a few precious seconds. We knew it was her way of letting us know, it was OK to let her go.
We spoke to the doctors and all agreed to withhold any extraordinary resuscitation measures if Caitlin’s heart rate fell again.
At a little before 9pm, Caitlin’s heart rate began to drop. The doctors and nurses performed very basic measures to keep her going, and after a few seconds left us alone with her. We told her how much we loved her, how proud we were of her, and that she would always be a part of us and our family.
Caitlin passed away in Michelle’s arms, on my lap, at around 9:06pm.
We want to thank everyone who reads this e-mail for their prayers, support and love. It will be always appreciated and not forgotten. Please don’t be too sad for us, we will be OK. Instead, be happy that Caitlin is finally at peace and enjoying a new life in a far better place. I am quite certain all of us have gained a new guardian angel.
For all interested, there will be a viewing on Wednesday, April 5 at George S. Hassler Funeral Home at 980 Bennetts Mill Road, Jackson, NJ, from 2-4pm and 7-9pm. The phone number is 732 364-6808. The funeral service and burial will be on Thursday, April 6.
On Thursday, anyone is welcome to meet at the funeral home at 10am for a small blessing and then procession to the church. Otherwise, the church service and burial will be held at 11am at Emley’s Hill United Methodist Church, at 69 Emley’s Hill Rd (corner of Millers Mill Rd and Emley’s Hill Rd) Cream Ridge, NJ. The phone is 609 758-8456.
We are asking that, in lieu of flowers, donations be made to a foundation Michelle and I have formed in Caitlin’s name to help fight premature birth and issues related to it.
The foundation is the “Caitlin Elizabeth Russell Foundation, Inc.” You can mail checks to 5 Banyan Court, Jackson, NJ 08527, or bring them to the wake and/or funeral. Through this, we are determined to have Caitlin’s life make a difference for other babies and their families in the future.