(7 Weeks Old)
A lot has happened since Angeline was born. Let’s just say that life with Angeline is anything but uneventful. On the stressful side, Angeline needed to undergo surgery to place a shunt in her brain on 7-13-2000. Her head was growing too fast due to her enlarged ventricles. Even when her hydrocephalus was considered to be mild, she was showing many of the symptoms of progressive hydrocephalus. The surgery was a success, and she came out of it pretty alert and hungry. But that same night she had a seizure while Emily was feeding her. She stopped breathing, her lips turned blue, then her whole body turned pale, and she became limp. She "came back" right away, but the doctors put her on a respirator while they ran a multitude of tests to find out what was wrong with her. Emily and I were very scared throughout this whole ordeal, but our faith in God kept us sane. Angeline ended up staying only five days in the hospital, and was discharged home on 7-17-2000.
Our little Angel doesn’t want her mommy and daddy to lower their guard, so she decided to run an unscheduled "scare drill" to test our readiness. On Monday, July 24, after noticing that one of her incisions was turning red, we took Angeline to the emergency room. They did a shunt tap, blood tests, etc. The doctors feared either a shunt infection or meningitis, but to be sure they had to run a culture test for 72 hours. In the meanwhile, the put her on heavy-duty antibiotics for three days as a preventive measure. All cultures came back negative, and Angeline was released five days later with not a single bacterium alive in her body.
Otherwise Angeline has been doing great. She has great appetite, not been picky about what kind of liquid food is offered to her. She goes for breast milk, bottled breast milk, formula, breast milk plus formula, or any combination of the above. At the beginning, she would wake up her mommy and daddy every 2 ˝ hours to be fed. But she is doing a lot better now, sleeping five hours straight during the night.
Angeline has done a great deal of growth in the last six weeks. She is now weighting around 7 pounds (she was weighting 6lbs. 14 ounces last Friday at the pediatrician) and measures 19 ˝ inches long. She likes to sleep a lot and her favorite sleeping position is facing down on her daddy’s stomach. She loves to move in her "newly put together" play pen. Mommy and daddy make sure that she exercises daily and she looks more alert every day.
Both the neurologist and the orthopedic were very impressed with her. The neurologist kept repeating "unbelievable, amazing." She explained to Emily that Angeline wasn’t suppose to have as much leg control as she does due to the level of her lesion. The orthopedic feels the same way. Even though Angeline’s anatomical lesion is a L2 (Second Lumbar Vertebrae), he pointed out that her left leg functions at a L4 level, and her right leg probably at a S1-S2 level. For those of you not too medically inclined, this means that she has a lot more leg movement that her lesion level would have allowed. The orthopedic told us that in his opinion Angeline would be able to walk. The doctors give credit to the fetal surgery for having arrested further spinal cord damage, explaining Angeline’s "surprising" leg function. We know that it was God, all the prayers, and the fetal surgery, that made this miracle a reality.
From the very beginning, Emily and I clearly understood that the goal of fetal surgery, far from being a cure, was to do "damage control" stopping further nerve damage. So far, the surgery seems to have been successful. Angeline is doing great, and even with her share of medical problems, she keeps struggling and overcoming obstacles every step of the way. Emily and I feel honored to have been chosen to be Angeline’s parents.
We are planning on going back to Nashville in September for our second annual fetal surgery reunion. There we will meet personally many of our internet friends and their children. It promises to be a very exciting and emotional gathering. We will keep you posted in our next update.