She was our second daughter, her due date was November 30, 1996. About 16 weeks into the pregnancy, I began irregular spotting that continued through week 24. The obstetric group we had at the time was horrible (these doctors are still in practice in Oklahoma!!) and dismissed my bleeding as unimportant. I continued to ask for ultrasounds, worried about the risk posed to the baby, but was continuously reassured it was my blood and not the baby's (??) and there was absolutely no risk involved to the unborn baby. I was deathly ill; sick, weak, unable to move, walk, or stand, and running a fever. The doctors didn't seem to care about my deteriorating health and I was too young and dumb to know to do much about it. Our insurance at the time told me I was unable to see other doctors so I continued to stay in the care of this health group. A few weeks later, the doctors discovered I was positive for a uterine infection called Ureaplasma. I was treated with antibiotics but never rechecked to make sure the infection was gone (I could have been treated again). I continued on with the pregnancy, praying for the best. Week 23, the bleeding increased and was very alarming. At this point I was put on complete bed rest at home but continued to bleed and was slowly dying! The docs finally admitted me into the hospital (on the day of my 26th birthday!) where I remained for the next 2 weeks until my water broke on the evening of August 12. By this time though I was so ill and looking back I think I was going into septic shock (major blood pressure problems, unable to eat, pale & clammy skin, sleeping continuously, etc....let me just reiterate here that the docs did NOT treat me for the infection again until about 4-5 weeks postpartum!!!). Contractions soon followed and I was sent downstairs to Labor & Delivery where I was monitored overnight. At 5am, I was awakened by a Neonatologist and a nurse who spoke with me about the risks of premature infants and the odds my baby faced. About 6am I was wheeled into the operating room (for a c-section I would later regret) and this little 1 pound 11 ounces infant was pulled from my womb. I heard a whimper, not a cry as you would normally expect, but a small whimper of a dying fetus. The Operating Room was filled with madness, twenty people scrambling and nervously bouncing around in panic and as they whisked her passed me I turned my head - not wanting to see the face of the baby I was about to bury.
She had < 30% chance of survival at birth but if she was still alive after 2 weeks, her survival chances would increase to 50%. It was a wait-and-see game and although we didn't know it, our lives would be a roller coaster for the next several years.
A head ultrasound was performed at birth, then again at 24 hours, and a third and final time at 48 hours after birth. The risk of brain bleeds is greatest within the first 2 days of life. They did the first and then the second - they determine bleeds by comparing the three images. Unfortunately they LOST the first image! They said as far as they could tell there was no brain bleed but without the first image they could not be 100% certain. So, we moved on.
We named her Brandi. My husband loved the song "Brandy" by LookingGlass (you know, the oldie song that goes "Brandy, you're a fine girl, what a good wife you would be....my life, my love and my lady is the sea....") so we chose the name Brandi. In my recovery room, my husband brought in some Polaroid snapshots of Brandi, I refused to look at them for fear she would die soon. She was very sick and later we discovered not only was there an infection but also a 60% placental abruption of which the placenta was green (from infection!!). Honestly, it was a miracle I didn't die along with her!! It's also an amazing blessing that 10 years later I was able to go on and have 3 more healthy children - the infection could have damaged my reproductive organs and bearing another child impossible! Brandi spent the next 4 months in the NICU, facing death numerous times. We got very used to the 2am phone calls requesting our presence at her bedside as she would not live to see the morning light. At one point the ventilator was not delivering 100% oxygen through her bloodstream, not even 50%, and she was so ill that she could not so much as be touched lightly without her oxygen sats plummeting. To increase her blood oxygen levels, she was switched to an oscillator, which delivered 600 breaths per minute rather than the 60/min the ventilator delivered. She was given sedatives to shut down her senses and remain comfortable on the machine, in return her body began closing its doors - her kidneys shut down and her little body swelled up 10 times the normal size (her eyes wouldn't close for weeks - these lifeless black irises just stared into darkness). The doctors discussed the possibility of kidney failure and death (again). She had a septic infection that they were unable to treat.
Apparently information between the doctors was lost in translation because after 4-5 weeks of her struggling to hold onto life, the NICU docs were clueless about the uterine infection I had. Once again, we were called in the middle of the night to discuss pulling life-support and "putting her out of her misery". When we arrived at the hospital, her doc tried convincing us to let her go and there was nothing left for them to do, it didn't seem fair to continue making her suffer. We couldn't give up though - we thought she'd be a typical child if she could overcome this hurdle. During this conversation I asked about the uterine infection I had during pregnancy - the neonate doc seemed surprised and excited, he began discussing antibiotics that were not tried because they were selective. Soon, Brandi was beginning to show signs of improvement, albeit slowly but still she was doing somewhat better. By two months old she'd fought for her life and won the battle. But she would have many more battles to come (much to our surprise).
At 16 months old I was still nursing exclusively - actually mostly pumping because she couldn't nurse effectively to empty the breast (pediatrician at the time was awful [same group of docs as the OB's] and btw, he is STILL in practice in Tulsa!!), Brandi was not sitting independently or crawling, and not talking or eating. Her Pediatrician demanded she start rice cereal at 4 months - when I questioned this because she was 3 1/3 months early (so really her body was only 1/2 month old) I was ripped a new one by the doc and told again to do as he said and start her on the cereal. I did but it was a struggle. Soon we switched to whole grain cereal as he suggested and at one point she began throwing everything back up. I asked if she had reflux but the Pediatrician just looked in her mouth and said "No, go home". Soon we were able to change docs and began finding answers. At 19 months she had an endoscopy (it was discovered she DID have reflux!) and she was given a g-tube (we were told at the time it was temporary - 6 months or so and this is an entirely different story!!). She still continued to vomit and so a few months later she had a fundoplycation (a surgery to tie up the bottom of the esophagus to prevent vomiting). At 21-months an MRI revealed brain damage - a portion of her cerebellum was missing and one ventricle was slightly larger than the other. The neurologist told us that there was no predictable outcome, these kids are all so different and he could not tell us whether she would ever walk or talk...there was no way to predict anything it just had to run its course. So, that day were given a diagnosis of cerebral palsy -- and we won't even discuss my overwhelming emotions & complete meltdown over that!
Me with Brandi (12 months old) & her older sister.
Brandi at 5-years old (with g-tube and diagonal scar from fundoplycation) and sister in 2001.
Brandi in 2000/2001 (4-5 years old) at The Little LightHouse School
Brandi is severely allergic to wheat, which of course is in everything...it's an anaphylactic reaction and it's very frightening. We can't even cook pasta, cornbread or cookies in the house without her going into an anaphylactic reaction. The allergist recently said she has "Baker's Asthma" and he's never seen a patient with it, not ever. The one thing I'm wondering about is this: Is it possible that because (going on doctor's advice) we fed her solids way too early in her life, possibly before her immune system or her entire body was ready for it, that she's developed this allergy to wheat/gluten? I'm not sure and I doubt we'll ever know but it IS life threatening....one crumb, one bad judgment and she could die. On the plus side, we did luck out in that she doesn't have seizures, so that's a plus.
Here's Brandi today:
On a day that she nearly died in the NICU, I remember screaming in the parking lot of St. Francis Hospital that God was a horrible God, that I hated him and I denounced him. I meant it. Having Brandi ripped out my heart and soul and I have not been the same since.
For years I was envious, resentful, bitter when I would see a child Brandi's age or younger who was able to run, play, jump, and talk. I thought bad thoughts - life just seemed so unfair and I thought it just sucked that out of all the people in the world I had to be the one with a disabled child.
At 14, Brandi weighs almost 70 pounds and is 4'10". I am 115 pounds and 5'2" - she's nearly as big as I am and life is slowly getting difficult for me. I can barely lift her, she needs my help to get in and out of the bathtub, to get into the car, to get in her stroller and my back is giving out. I'm scared.
It's been rough. Something I never imagined going through....EVER. I still struggle to accept life this way - for her and for us. I don't know what the future holds, but it's a very scary thought indeed. I try to think of today or tomorrow or next week, not next year or ten years from now....it's just too frightening to dwell on and it gets overwhelming. If I had one wish in this world, I wouldn't wish for money, love or fame...I would wish that Brandi was normal...actually I would wish that all of my children were healthy. I would give up my legs if Brandi could be normal - but ultimately that's a waste of my time and effort to dwell on the "what if's" in life.
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