November 21, 2005 – March 1, 2006
Dear Family & Friends:
Our beautiful little girl, Caitlin, is 100 days old today!!! For perspective, her original due date was March 10—still more than week away. We figured her big day would be a good excuse to give everyone an update on how she’s been doing. We’ve included a couple of photos, too.
Before I begin, Michelle and I want to thank everyone for their thoughts, prayers and words of encouragement during what has been a really, really tough 3+ months. It means more than you will ever know.
So many people have asked for updates and news on Caitlin that I considered sending out periodic updates, but with the way things can change from literally hour-to-hour in the NICU, I decided it was best to wait a while and then catch everyone up at once. So, here it is…
To refresh your memories, Caitlin was born at 24 weeks and 5 days (40 is full-term), weighing 1 lb. and 7 ounces, measuring 12 inches long. Today, she weighs just over 4lbs. and measures 17.5 inches long. Sounds impressive on its own, but after I explain what she has been through in between now and then, it will give you an idea of why she is such an inspiration to us, and why we have such high hopes for her future.
After she was born, Caitlin, like all very premature babies was put on a ventilator to allow her to breath and to keep her lungs inflated. She was given medication to close a duct between the pulmonary artery and the aorta to allow for proper circulation of her blood. The condition is known by the acronym PDA.
A few days after her birth, an ultrasound revealed Caitlin had bleeding within the ventricles of her brain. Nothing can be done about this, other than to make sure pressure doesn’t build within the ventricles from blood clots.
A week after that, she contracted a serious gastrointestinal disease, known by the acronym NEC, which involves infection and inflammation and/or destruction of part of the intestine. A drain was inserted into her abdomen and she was given antibiotics and medication to boost her blood pressure. She beat the odds, survived and recovered. The side effect was that the duct near her heart had reopened as a result of the immense amount of fluids she received to help fight off the infection, adversely affecting blood pressure and her ability to get off the ventilator. In addition, a few weeks after the drain was removed, she developed what they call a fistula. Essentially, it is an offshoot from her intestine to the outside of her body. While she pees like other baby girls, she goes number two out of that fistula and into an ostomy bag. This will need to be repaired surgically at some point in the future—we are hoping before she comes home.
After she recovered from the NEC, Michelle began to hold Caitlin for 45 minutes to an hour each day. I got into the act a few weeks later.
Around a month after she was born, we were told that due to the brain bleed and another condition known by the acronym PVL, that an ultrasound revealed damage to Caitlin’s brain. What that means down the road is not completely known. The only thing anyone can tell us for sure is she will be at a higher risk for certain developmental disabilities as she gets older. The only thing we know for sure is that Caitlin has overcome every obstacle she has faced so far, and because of that we have great hope and optimism that she will continue to defy the odds in the future and escape any serious problems.
Just before the New Year, it was decided that Caitlin would have to have surgery to close the duct near her heart that had reopened when she got sick. We actually pushed for the surgery so she could come off the blood pressure medication and start making real progress in terms of her respiratory condition. She had to go to the OR, where a small incision was made under her left arm pit and the procedure was performed with microscopes. It was successful.
Shortly after the New Year, Caitlin was taken off the ventilator and put on CPAP, the next step towards respiratory independence. CPAP does not require a tube down the throat like a ventilator, but does include a bulky contraption that is secured around the baby’s head with velcro and two prongs in the nose. It forces the baby to take the majority of breaths on their own, while still providing oxygen (when necessary) and pressure in the lungs. Caitlin did well on it, but drove the nurses nuts by constantly trying—and sometimes succeeding—in removing it from her head, setting off alarms, but giving her a few seconds of freedom.
While this was a great time for Caitlin (and us) we noticed that we when she cried there was no noise. That was fine when she was on the ventilator, since no one can cry with a tube down their throat, but not hearing it after the switch to CPAP was a concern. An ENT specialist was consulted, and Caitlin was diagnosed with a paralyzed left vocal chord. We are told that this could have happened a number of ways, but likely from either the ventilator tube or during her PDA surgery, where the vocal chords nerves have to be manipulated during the procedure. The consensus is that over time she should regain function on her own. If not, it can be surgically improved/corrected.
It was also around this time that Caitlin started to receive breast milk Michelle had stored through a feeding tube that was snaked down her throat and directly into her stomach. At first, it was just a few tablespoons every few hours, but she quickly ran through all the milk, and progressed to entire preemie bottles of formula.
After a few weeks of feedings, Caitlin came down with rotavirus, which is basically diarrhea that lasts for two weeks. She had to be put in isolation during this time, and we had to wear sterile aprons and gloves when handling her. During this time, they scaled back and eventually stopped her feeds, putting her back on IV fluids. It was a disappointing setback, but nothing overly serious.
During this time, the eye doctor, who had been visiting Caitlin once every two weeks to check for any signs of an eye disease that affects premature babies, told us that she had begun to develop the early stages of that disease. He would continue to monitor her to see if it would resolve on its own. If it progressed to the point where retinal detachment was a possibility, she would be a candidate for laser surgery.
In the latter part of January, Caitlin was recovered from the rotavirus. Shortly thereafter she was removed from CPAP and put on the final step of respiratory assistance, called a nasal cannula. I am sure most of you have seen these either on ER, or now, Grey’s Anatomy. It’s a thin tube that wraps around the head, held in place by tape and two small prongs in the nose. It provides minimal amounts of oxygen, and that is it.
Things were going great. Caitlin even started taking a bottle and sucking down small portions of her feeds while being held by Michelle or the nurses. We thought the major stuff was behind us, and even started entertaining thoughts of coming home.
Then, on the day of the big snowstorm, Caitlin unexpectedly contracted NEC for the second time. In a matter of hours she went from breathing on her own, feeding out of a bottle and wearing baby clothes, to going back on the ventilator, being fed IV fluids, battling a serious infection, and getting x-ray’s every few hours to see if she would need what would amount to life-saving surgery.
In the meantime, the eye doctor came on his now weekly visit, and discovered that her eye disease had progressed. He decided, with our consent, to perform the laser surgery late that afternoon with the intent of preventing retinal detachment.
Suffice to say, the two weeks that followed were tough. But, Caitlin has proven to be even tougher. To date, no surgery has been needed to treat her NEC, and it appears to be resolving with antibiotics. There are still a few more tests to be done before she gets a clean bill in that regard, and we are hoping to get some good news on that subject today.
Caitlin was taken off the ventilator and moved back to the nasal cannula yesterday, and was doing well as of last night. We have even started to hear some faint cries from her. The eye doctor called yesterday and said that she seems to be responding well to the laser surgery. He will need to exam her weekly for the next two months or so, but hopefully this procedure is all she will ever need.
Moving forward, we know she will need one more surgical procedure, in which they will determine what damage, if any, was done to her intestinal tract as a result of the NEC. In this surgery, they will fix her fistula, and any other damage they find. The surgeons seem optimistic that if any damage was done, it was minor and won’t have any long-term affects on bowel function.
That leads us to today. Again, we are so thankful for all of your thoughts and prayers. We can’t wait to get Caitlin home and have her continue to amaze us. And we absolutely cannot wait for all of you to meet our amazing, inspirational, beautiful, resilient (and soon to be spoiled beyond belief) little girl.
We also wanted to let you all know that we are forming a non-profit foundation in Caitlin’s name to raise awareness of premature birth, improve treatment of its complications, benefit special needs kids and, hopefully one day, play a small role in preventing other families, and especially, children from going through something like this. Be on the look out for some type of fundraising event (a golf outing, dinner dance, etc.) sometime this summer or later this year.
Talk to you soon.
Love,
Chris, Michelle & Caitlin