Wow

This is a story from that Dilbert post, just touches me(having gone through three pregnancies and births in the recent past).

Well my story is a bit long and melodramatic, but here goes. There are some fairly intense medical situations involved, so please do not read if you are squeamish.
Thus far the defining moments of my life have been the first eight weeks of my daughter's life. My wife and I have been married ten years, and have a son who is now three.
When my son was born, my wife suffered through 26 hours of labor before they literally forced a C-section on us. Due to the long labor, my son's head was stuck in my wife's pelvis. A 20-minute operation became two and a half hours of four doctors trying to un-wedge my son and bring him out into the world. After a second, vertical incision, and a bunch of pushing, my first child was born- a healthy baby boy. We were the "one horror story from every class" the childbirth instructor warned about.
Fast forward two years. The wife and I decide to have a second (and final) child. Because of the serious C-section complications with my son, my wife will need a planned C-section. All pre-natal checkups went well, including four ultrasounds. My daughter, to be named Bridget Kathleen, was due in late April, my wife's C-section was scheduled for early Arpil.
On March 28th, I got a call at work from my wife, who was mostly incoherent. I got enough information to understand she was in serious pain and had called her friend to drive her to the emergency room. I asked if she needed to call 911 and she said she had to call her OB, and asked me what her OB's number was. That was a warning sign to me, but I called back three minutes later and her OB was going to meet her at the hospital. Having taken the bus to work, I called someone to drive me to the hospital ASAP to meet my wife. When I got there, the maternity ward resident on duty was ghost-white yelling at the staff to prep surgery stat and the baby was in crisis, and I needed to stay back and wait for information.
While I waited, I learned from my wife's friend that she had been yelling at my wife the whole way to the hospital to stay awake, and they had to nearly attack the ER check-in staff to get a wheelchair and take my wife to maternity. It seems the ER check-in staff wanted her to fill out some paperwork first... (I had been there the previous week with her with some false labor, and found that they had not processed the paperwork I had given them the previous month as requested. Fortunately I had kept a copy, and gave it to them, watching them fill everything out myself this time, just to be sure.)
So my wife's friend is freaking out and decides to go out and start smoking again after a few years of being a non-smoker, and I am left in a waiting area with nothing but my own thoughts and fears. I resolved that whatever happened, I had to deal with it, as this is how life goes. I text-paged a couple of my friends with an update and waited for the doctors.
The resident came out after about 20 minutes to let me know that my wife's uterus has ruptured. As in, split open and she had massive internal bleeding. As in, my daughter had let go of the womb and was floating around, without oxygen, inside my wife's abdomen, for an unknown period of time. They were trying to patch up my wife's uterus and get her stabilized, but she had lost a lot of blood. We were very lucky because another five minutes would have certainly meant death by bleeding out. My daughter was not breathing and was being resuscitated. Very deep crap.
About five minutes later, my wife's OB comes through and said, "I know your wife wanted me to perform a tubal ligation (tubes tied), but given the circumstances, I thought it best to hold off to find out how this is going to turn out. We were able to patch her up and she'll be able to have another child if she has time to heal." The OB tells me whatever happens, to be thankful my wife is OK, but... hesitation... "Your daughter's condition is very serious. We don't know how long she was without oxygen, how serious the injury is from lack of oxygen, or how she might recover from such an injury." This man does this for a living and sees a lot of crap. I'm taking it completely at face value but trying to be optimistic. Subtext of these messages is: Your wife is OK (phew!), but you daughter is probably not going to make it.
About ten minutes after that, the neonatal emergency staff are bringing my daughter through in an incubator, pumping her with air on the way to the ICU. It was the most stark-terror inducing, gut-wrenching scene I have ever witnessed; a six pound-ten ounce, jaundiced baby girl, gasping for air and trying to breath. MY baby girl. Barely alive and with unknown prospects. The nurse turns to me and says what I still consider about the worst thing I could have heard:"Now, that gasping she's doing, it may just be a reflexive motion. I want you to realize there's a good chance she's complete brain dead." Mountain of scary crap!
At this point, my wife is still in post-surgery, under anesthetic. I go out to make the hardest call of my life: explaining this to her mother. (It is important to note that my Mother-in-law is the sweetest, most supportive person I have ever met in my entire life. I do not fear telling her that her daughter is in trouble and her highly anticipated granddaughter is likely not going to make it, except for the immense emotional strain it is going to put on her... from five states away.) I tell her the situation to the best of my ability, in as calm a voice as I have ever spoken in my life. She goes, "Oh, my God." Repeats it several times, and starts to cry. My father-in-law agrees to rush her to the airport to fly in. I update my mom and my wife's friend as to the situation. My mom is keeping herself ignorant of reality with what's going on by taking good care of my son. Thank God for active denial. :)
I go to see my wife in recovery, and pester the nurses probably about 30 seconds for updates on my daughter. I hold my wife's hand as she slowly starts waking from the freakish cloud of anesthesia... she's been through this before with other surgeries, and doesn't react well. She asks where Bridget is. She starts crying and asking why she can't see her baby. All I can do is tell her, with the slightest crack of uncertainty in my voice, that "they are taking care of her, we'll see her soon." My wife breaks down and I try to comfort her, but how do you tell a mother the baby girl she's been carrying is seriously injured, and may not survive?
We are finally briefed by the neonatal specialists. Bridget has been stabilized but is still in critical condition. She has had several episodes of what appear to be "posturing," or seizure-like behavior. She is on a ventilator. Her nervous system is being deliberately impaired by drugs to better asses her condition and treat her. We wheel my wife in to see my daughter, who is under lights to reduce jaundice, connected to about eight different IV drips, and has her tiny wrists and ankles strapped to a backboard. A ventilator pumps air in and out of her lungs. They tell us she needs to be life-flighted (helicopter ride, whee) to the local Neonatal Intensive Care Unit. Fortunately, that is only about half an hour away.
They strap my daughter into a special incubator and load her onto a helicopter, leaving my wife and I with a plush LifeFlight helicopter. My wife's friend writes on it, "They took my baby and all I got was this stupid stuffed helicopter." We sort of laugh to keep from crying. My wife talks with her friend for a while, as my mother goes to pick up my mother-in-law from the airport. My mother-in-law and I spend a sleepless night in the hospital around my wife, calling the other hospital to check in on my daughter. My wife keeps reliving the harrowing drive to the hospital where she "feels herself slipping away, thinking she is going to die." It's hard to be positive, but we're happy to have each other.
In the morning, I drive down to the other hospital's NICU to check on Bridget. Her condition was mixed. Her brain activity was "abnormal." They wanted to do more testing. The NICU doctor is a very compassionate, very young, and clearly very intelligent man who is explaining an anoxic brain injury. The loss of oxygen to my daughter's brain has caused a serious injury. The severity of which, recovery prognosis for, and long-term effect of, were unknown. I check on my wife, and find out that she and my MiL are being loaded up onto an ambulance to be moved to maternity of the hospital that I'm at.
Several sleepless days follow, where approximately 80 different doctors talk to us... "case workers" from the hospital to provide emotional and practical support, neurologists, neonatal specialists, interns, residents, cardiology specialists... wait what? Why cardiology specialists?
Well as my daughter is slowly being weaned off the ventilator, they are finding her breathing is much too fast for a normal baby. Could this be caused by the brain injury? (I already knew the answer, I kind of understand the basics of human biology.) No, even if she were mostly brain dead, her body would still know how to breath right. They start putting her heart and lungs under the scope. Nothing conclusive, check again later.
At day three, they do a much more elaborate neurological evaluation, a 24-hour monitoring of her brain activity, using electrodes all over and a camera to watch her behavior. No seizures, very good. More stable brain activity, a few anomalies, but the results are encouraging. They order an MRI. They show me an MRI. I see the surface of Bridget's tiny brain is covered with burst blood vessels (simply dark spots on the MRI). The neurologist says gravely, "normally when we see this sort of injury, the baby appears limp, unresponsive, or comatose... 99 percent of those babies are in vegetative states." His tone changes. "But in your daughter's case, amazingly, he muscle tone and reaction to stimulus appear to be almost completely normal. That's very encouraging. MRIs are not absolute, they are only indicators. Coupled with the EEG results, and her starting to breath on her own a little bit, her chances are pretty good." Yes! Score one for the home team! "But... she's still in very serious condition."
Day four. The heart tests (aka Echocardiogram, or Echo) are sowing some unusual things. First there's an abnormal formation in a bend in the aorta-- a coarctation, or coarct. This is causing some slow flow, but there's a 50-50 chance it will resolve itself within the first year. Then, the big one... a large hole between the chambers of the lower heart- a VSD, or ventricular septal defect. This is the most common type of defect, usually one this big shows up on prenatal ultrasounds. Dangit. "When they're this big, they don't resolve themselves. The reason she's breathing so quickly is that the blood flow through her heart is improper, it's circulating twice through the lungs for every trip through the body. Without open-heart surgery, she'll probably not survive six months." One step forward, two steps back.
Bridget is in the hospital for five weeks. They wean her off the ventilator at seven days. She starts to show signs of alertness, but because of the brain injury, is remaining on phenobarbitol to suppress brain activity and muscle spasms. She mostly sleeps. They have four IV needles in her, and a tube up her nose and down her throat to pump food into her stomach. At five weeks, we are finally able to take her home, though we have to feed her through the tube (which she is, amazingly, groping at with wild arm movements and managing to pull out, requiring us to reinsert it) and using a special pump and formula. She's on several drugs for her heart condition.
About three weeks after we took her home, we notice Bridget's starting to labor while breathing, and it sounds wet and raspy. We take her into the ER, and they keep her for a week before scheduling the open heart surgery. Bridget weighs six pounds, eight ounces-- less than when she was born eight weeks earlier.
The day of the surgery, my wife and I get up at 5:30 to help the surgical team prepare her. We kiss her and tell her we love her. She has surgery to patch the VSD with Dacron, and there is a small ASD (hole between the upper chambers of the heart) that is stitched shut as well. At around three in the afternoon, we hear that she is out of surgery and in recovery. We spend a few hours with her and decide to take a break. We leave the hospital at ten to meet our friends, who have tickets to the midnight premiere of Star Wars, Episode III. We're exhausted, we're emotionally spent, and we've been up 20 hours... but we have a great time with our friends, who are nothing but supportive. We go back and sleep in the chairs at the hospital beside our daughter. They tell us the average stay after this surgery for a baby is 10-14 days, Bridget is discharged after five.
Today, Bridget is fifteen months old. Her cognitive development-- speech and learning, etc-- are very close to normal for her age. She has no severe metal disabilities that anyone can detect. She has neuro-muscular deficiencies... she has just learned to awkwardly sit herself up, she can't stand or walk, and she has a difficult time with fine motor control... but she can feed herself well and gives us so much joy in our life. Bridget continues going to regular physical therapy to help her build strength and dexterity. She will probably be able to lead a semi-normal life. Her cardiologists are a bit concerned over some enlargement in the right side of her heart... she might have a bad valve. They'll try to figure that out for certain at her eighteen-month checkup. It doesn't matter what happens, though; we love her, we love her spirit, we love her strength, we love her. There's nothing else to say.
*Big sigh.* As a follow-up to the more practical aspects of the situation: Looking back I have no idea whatsoever how I kept it all together emotionally... but let me just say that certainly we couldn't have managed all the logistics of transportation and care for my son without the tremendous help and support of our families and friends. The OB told us that carrying another child had a good chance of killing my wife through another rupture, so I took one for the team and got a vesectomy shortly after Bridget's heart surgery.
Financially... well, it continues to be difficult. I almost lost the house once while trying to balance everything, but I took a loan out again my retirement plan to pay off outstanding debts and catch up.
My health care plan is good, but we are still trying to identify what our responsibility is and our payment options are for the remaining eighteen to twenty thousand dollars that the hospitals, doctors, and other billing companies believe we owe. Long-term, this is going to hurt us; the pre-insurance bills totalled nearly half a million dollars- it's 13,800 dollars for one night in the NICU, just for a bed and nursing care, drugs and equipment are extra. In the end, I don't stress over it. Bridget is worth every penny.
From a religious standpoint, many who hear our story proclaim that Bridget is a Miracle Baby, that this was divine intervention. I can certainly consider that possibility, but a guilt accompanies that thought: How was it that The Creator gave us this wonderful child, and took away so many others who were in the same situation? How did we deserve it? Maybe people who believe in a Divine Plan can accept this, but it is hard for me to understand. I'm happier thinking that, thanks to some lead-footed driving by my wife's friend, a spirit of determination to stay alert by my wife, raw will of life of our tiny fighter Bridget, advanced medical technology, and a whole lot of luck got us through. We are so thankful for what we have, I don't think it's as important to think about the why, as much as it is important to take the opportunity that we've been given to enjoy our lives and give our daughter the happy, healthy life full of opportunities that she deserves.
Posted by: RogerX June 13, 2006 at 07:57 PM