Caleb and the NICU
While waiting for our belongings to make their way from Berkeley to State College, my wife and I stayed in Michigan with our family. My wife was pregnant and after two miscarriages things seemed to be going well. Unfortunately, at 21 weeks (of 40) her water broke (premature rupture of membrane, i.e. prom). We went to the hospital and were told that babies born at 21 weeks cannot survive and that she should end the pregnancy. We just couldn’t bring ourselves to do that especially since Rita could feel the baby moving. The doctors transferred her to University of Michigan Medical Center and placed her on bed rest there. They also told us that labor would most likely start within 48 hours and that premature babies born before 24 weeks have very little chance of survival, and if they do survive they typically have many long-term health issues. After being in the hospital for seven weeks (apparently a record at the time) they finally had to induce labor (with very little amniotic fluid it was better for the baby to be out at 28 weeks). Caleb was born on September 18, 1998 and immediately taken to the NICU.
While the nurses tried to prepare us for the NICU, I was completely unprepared for the challenges that Caleb would face. During his first day there we watched his blood pressure drop to the single digits. The nurses started preparing us for him not to make it. Fortunately, the medication started to work and his blood pressure slowly rose. While all the days of his nine-week stay in the NICU were not that rough there were many more ups and downs. It was an emotional roller coaster ride, a big wake up to the real world, and rough welcome to becoming a father and professor. Needless to say, my first semester at PSU did not go well.
While Caleb coming home from the NICU was a huge step forward, it also was a very trying time for Rita and me. He was still in need of a great deal of medical attention and constant monitoring. We hooked him up to a breathing monitor at night which constantly false alarmed. We took him repeatedly to Hershey Medical Center to determine if his retinopathy was improving or worsening. We tried everything possible to get him to gain weight. Nothing worked because I think his ultra-thin build has nothing to do with being premature. We get letters home every year from school alerting us that his BMI is in the 0.5th percentile. That’s the problem with sick kids. You never know what is a problem and what is just individuality. This has been even more of an issue with Amanda.
Cancer and My Mother’s Passing
Not long after Caleb’s health seemed to stabilize and we were less concerned about what long-term health problems he might have, my mother was diagnosed with non-Hodgkins lymphoma, i.e. cancer in the immune system. The thing with lymphoma is that there are a variety of types as well as a variety of stages. Some are very slow growing, extending life expectancy but also reducing the effects of chemotherapy. Some are fast growing and respond well to chemotherapy. If one can survive the chemotherapy and remove the cancer the prognosis is quite good. There are also types with growth rates in between these. It was never quite clear (to me at least) what type my mother had. The doctors treated it aggressively with chemotherapy and for a while it seemed to be working. However, as anyone who has closely followed someone with cancer knows, there are many ups and downs as one test result looks encouraging and the next looks discouraging. After a few years, it became clear that she was losing the battle. She passed away during the summer of 2003. Fortunately, having summers quite free, I was able to spend a lot of time in Michigan with my parents before my mother passed away. I will always remember the morning follow the night she died. Coming out of the house that morning I saw one of the most spectacular rainbows.
Losing my mother was quite hard. She was the one from whom I got my temper, overzealous passion, outspokenness and strong desire for fairness and honesty. Unfortunately, this combination of traits also tends to annoy people if not moderated properly. My mother, who dealt with this with herself and her family, was always the person who would help me with this. Whenever I was overly upset about something and wanting to lash out, I would talk to her and inevitably calm down. There are a number of occasions since her passing when her calming wisdom would have been helpful.
Amanda and Another NICU
After overcoming our fear of having another premature baby (which is much more likely) Rita got pregnant with Amanda. While there were some early indications that not all was right with the fetus (there was a two-vessel, as opposed to the normal three-vessel, umbilical cord and some questions about kidney function), ultimately the doctors expected Amanda to be a normal baby. Thus, everyone was shocked when she was born. Some minor exterior lower-abdomen defects were just a prelude to all the internal defects we were to discover.
Having spent a lot of time in the NICU were there is really no privacy, we learned a lot about the myriad of problems that full-term babies can have. In fact, you really start to realize how amazing it is that the vast majority of babies are not born with birth defects.
Amanda was rushed to Hershey Medical Center after it became obvious that her bowel function was not normal. There we learned that a whole lot inside her abdomen was not normal. In some regards, it is amazing it all works and says a lot about the fault tolerance of biological systems. While an entire listing of all her issues would require another post, she has had a total of 13 surgeries to: remove a section of colon that did not have nerve endings, untether her spinal cord, remove her ruptured appendix, remove her stone-filled gall bladder, replace her nonexistent bladder with bowel tissue, fix her new bladder, open and close a colostomy, and open and close a vesicostomy.
She is now ten years old and reached what seems to be a steady state. Her reconstructed bladder appears to be working well. She has to catheterize herself every three hours (at night too) to empty it, and every few months she winds up in the ER because the catheter channel is blocked. This happens mostly at night when she (for whatever reason) produces a lot of urine but while sleeping does not realize her bladder is overly full. She also still has some issues with her bowels and has an antegrade colonic enema (ACE) every morning. She still gets bladder infections fairly regularly. The biggest issue is that we never know when something else might creep up (like the gall stones). We never know if she is just sick with a stomach bug like a normal kid or if the illness is something more serious. Fortunately, none of her recent ailments have been serious and we are beginning to assume an illness it is just one of the routine ones all kids get.
A House Fire and the Death of Three Nephews
This is probably the worst experience I have ever been through. A year before my mother passed away and a year after Amanda was born on November 15th, 2002 three of my nephews (my wife’s sister’s children) died in a house fire. They were 13, 10, and 7 years old. My wife (especially) and I were very close with the oldest one who we took care of regularly when he was a baby. I can vividly remember being awoken by a phone call in the middle of the night. Neither my wife nor I got to the phone in time to answer it. When it started to ring again we knew something was wrong. I can still remember my wife screaming, “Mark, tell me it’s not true! Please tell me it’s not true!” I first assumed it was something about her mother or father, and it took a few minutes before she was actually able to tell me what had happened.
I am still not completely sure what exactly happened. From what I understand an electrical fire started in a small attic space next to where the boys had their bedroom. They think maybe when the house had a new roof installed that a nail might have shorted some wires. The fire apparently smoldered for several hours during the evening. When it finally burned through the bedroom wall near the top of the stairs there was a great deal of heat built up and now given ample oxygen almost immediately engulfed the stairwell and much of the bedroom. At this point the fire alarms went off but the upstairs bedroom was cut-off from the downstairs where my sister- and brother-in-law were sleeping. They immediately called for help but were blocked from going up the stairs. They then went outside and tried with a ladder to get to the only window away from the heart of the fire. They could not reach the window because the ladder was too short. Once they found something to further elevate the ladder the fire was too hot to even approach the window.
This was a tragedy that one would like to think was caused by negligence so you can think it could not happen to you. However, it really seems like nothing could have been done. Everything that could have gone wrong did.
I hope that they were overcome by the smoke and passed out because they were burned beyond recognition. A number of volunteer firefighters were burned through their protective gear trying to get to the boys. One was the brother of a high school friend who apparently went through many months of therapy trying to deal with what he saw.
The aftermath of this is still an issue for my family. My wife cried regularly for a year, was then depressed for many more years, and was then upset that her memories of her nephews were fading.
My son and older daughter are now the age of the older two boys who would be 22 and 19 now. However, it is like they are frozen in time and my children have caught up to them.