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The struggles my husband and I went through when our daughter was born 11 weeks premature. |
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Hi! My name is Christy, I'm 28 years old and I live in tornado alley. Once my daughter is a little older I'll be going back to school to pursue my Psych degree. I've recently been through some major stuff and I want to share it with others. There's nothing like the turmoil of almost dying and having a premature baby in the ICU for eleven weeks. I had Eclampsia, which is described in more detail in my entries. Typically the doc will test for Eclampsia at 32 weeks or so, but I was struck with it at 29 weeks, so no one had any idea I even had it. So all you pregnant ladies out there: If you have a severe headache, go to the ER immediately. I had a severe headache the night before I had the seizures, which was a warning that my blood pressure was too high. |
| ** Images For Use By Upgraded+ Only ** Here's Miss Cadence tipping the scale at over nine pounds in the arms of her daddy, Chris. The day after our power was restored we drove to Springfield to take Cadence to her eye appointment. We’ve been worried about the condition she has, called ROP, which can cause her retina to detach and will cause blindness. This can happen quickly so it’s important for her to be examined at least once a week. The exam is quick but it’s hard to deal with because she screams her head off. The doc puts these medieval looking metal prong things on her eyes to force her lids open, and it scares her. It isn’t painful, but it’s uncomfortable and it freaks her out. After the doc removes the prongs she has these indentions around her eyes for a while. She’s had fifteen of these exams since her birth and it’s still hard to deal with. The doc told us that her eyes have corrected themselves and that she might not even have nearsightedness or farsightedness! We don’t even have to go back until she’s a year old. I’m so happy about this because her eyes were the last things I was worried about. I had these nightmarish visions of Cadence going blind. But that’s not going to happen. Thank God! About a month ago these social workers from a program called Birth to Three Years visited our house and examined Cadence. They were sent to determine whether she is developmentally challenged. If she was, the state would help us get her the help she needs. They tested her hearing, her reactions to sounds, stuff like that to verify if she has any problems. Yesterday I received their findings and they concluded that she has no developmental problems at all! This is great news since some preemies can be “slow”. Apparently Cadence (so far) is keeping up with her peers, kids that weren’t born premature. I worried about this because when I went into the seizures I stopped breathing for a while and I worried that Cadence was deprived of oxygen in the womb and it might have affected her brain. (The Eclampsia also deprived her of oxygen for several weeks!) |
| Last week a severe ice storm affected our area and we lost power for several days. It was getting colder and colder in our house and on the second day we decided to try to get a hotel room since we had heard rumors that it could take up to a week to restore our electricity. If had just been me and Chris, I wouldn’t have worried so much. We would have just bundled up and dealt with it. But since we have Cadence now I didn’t want to take the chance that she could get sick, so we called around. Two of the hotels in our town had no power, and the third was booked since the electric company sent in a troop of workers from surrounding areas to fix the electric problem, and they had taken all of the available rooms! Finally we thought of the bed and breakfast about a block away from our house. It’s this old Victorian mansion that’s gorgeous and I always wanted to see the inside, but not under those circumstances. They had one room left so we took it. Well I wasn’t there four hours and the bed and breakfast lost power! So I was wandering the corridors of this big old house with the creaking wood floors by candle light and I felt like I was in a Scooby Doo episode. Luckily they still had heat so we were toasty warm, actually, at one point I woke up because I was hot. The storm was scary because there was about two inches of ice covering everything. Trees were overturning from the weight and huge branches were cracking off (it sounded kind of like a gun shot, I heard it every day) and were tearing down the power lines. Finally the situation was corrected but for a while there I really started to worry! Everything was closed and dark and it was kind of like a ghost town. It made me realize not to take the simple things for granted. |
| Well, the state has told us that we make too much money to qualify for help with our ginormous medical bills. Do you have to be dirt poor to get aid? Practically destitute? Oh, well, we’ll just pay twenty dollars a month until we die! |
| I have nightmares about medical bills. In the dreams, the bills stack up into heaping piles and finally overtake our office. Cadence’s doctor bills are about half a million dollars! Just the helicopter ride cost $18,000.00. One day in the neonatal ICU cost 2 grand, and she was there for eleven weeks. That’s not including all the tests they ran on her. Plus the pediatrician and eye doc bills. And then there are my own medical bills. I was in the ICU for three days, and in the hospital for a total of six. And I know it cost a fortune just for the ambulance to arrive at my door. The docs are afraid that Cadence is going to contract a respiratory virus called RSV, so they’ve ordered her to have six shots to prevent it. Each dose costs around $1,200-1,500! Luckily we have excellent insurance and they’ve agreed to pay for 80%. We applied for government aid to take care of the remainder. We’ll just have to wait and see how much we’ll end up paying out of our own pocket. |
This year has been so full of turmoil that I am absolutely exhausted, and I can’t help but wonder, “What next?” Now I understand why ancient cultures offered human sacrifices to the gods. The only thing we can be sure of is death, and in between birth and death the shit will constantly hit the fan. I wish there was a method of ensuring that the future will bring only happiness, success, and peace. And good health. Today my father went to the doctor and found out that his blood pressure is extremely high. It was so high that they wouldn’t let him leave the building until he had taken several pills, and they discussed sending him to the hospital. I’m worried about him, but if he takes his meds, eats the right foods, etc, he can manage the blood pressure. They did take some of his blood for further testing (I’m not sure why, I’ve been too afraid to investigate on-line). My father is an interesting guy. I remember being a small kid and watching him write in his spiral notebooks for hours. He loves horror and sci-fi movies, and my younger brother and I were raised on them. I remember watching Star Trek The Next Generation with him when I was still in grade school, he’d let me stay up late on those nights. Sometimes he recorded old black and white horror flicks for me, like The Creature from the Black Lagoon. He’s a history buff, with a memory like a steel trap, and can give detailed lectures on different historical events. And when Jehovah’s Witnesses knock on his door, he invites them in for a theological debate. I want Cadence to be able to know him like I do, and the thought of him being too ill to be “himself” is horrible. I can’t behead someone like an Aztec priest to ensure my future, so I guess in this case we’ll (again) have to rely on the medical field for reassurance. |
| My doctor told me that having more children would be extremely risky. Many women with Eclampsia have multiple kids, but the chance that I could die or have other serious problems is high. Sometimes a woman will have Eclampsia with her first child, then have a second and experience no complications at all. But there is no conclusive evidence that a second pregnancy would go like that for me. When I was pregnant with Cadence, I often thought about having two kids--trying for a boy. But on the other hand, I can’t bear the thought of having another preemie. And what if something went wrong and I died? Or worse yet, what if my child died? I had the worst case of Eclampsia that my gynecologist had ever seen. The doctor at the hospital told me the same thing. My mom is freaked out, worried that I’ll change my mind and try for another child. My husband has also voiced the same fears. When they mention it, I just say, “This isn’t Steel Magnolias!” I can’t risk my life because I want another child. Cadence needs her mother. |
November, 2007 We finally made the journey to Springfield for Cadence’s eye exam. The hospital we go to is extremely nice and modern, it looks like a brand new facility. Of course, every time we’re there someone wants to touch her, and I have to put on my protective mom hat. I’m surprised how peeved people get, but what else can I do? The way most people get sick is through contact with a sick person’s hands. Someone wipes their nose or coughs onto their fingers, and then wants to touch my preemie? I don’t think so! The eye doc is a handsome man, quite attractive. His nurses are obviously ga-ga over him. He checked her eyes and told us that they are getting better. This is a great relief. I feel like (hopefully) it is the last hurdle we have to cross. He wants us to come again in two weeks instead of the typical one, and he believes that the next appointment will be the last. I’m crossing my fingers! |
| November, 2007 My husband, Chris, received some terrible news today. His biological father has been diagnosed with a rare brain disorder. It affects his temporal lobe, and it is degenerative. His behavior will become strange, he’ll curse and shout or laugh for no reason, he’ll become aggressive, and as time passes, he’ll forget who people are and he won’t know where he is. This is a particularly hard blow for Chris because for many years they did not speak. Chris was angry with his father for perfectly sound reasons, and they did not exchange one word for over five years. His father didn’t even come to our wedding, because he says he didn’t want to see his ex, Chris’s mom (which I think is totally selfish and childish). Chris forgave him for that, and we went to his house and the whole time all he did was talk badly about Chris’s mom and the rest of Chris’s maternal side of the family. This pissed Chris off because his father did not raise him, his maternal side of the family did. So after the visit Chris was angry and hurt, and refused to talk to his father ever again. He changed his mind while I was recuperating in the ICU. He called his father after five years, and they finally reconnected, which I had been urging him to do for several years. But now he’s found out that his father is slowly going to go crazy. The eventual result will be death, and the specialists told him he only has a few years left. His father is retiring early, but they won’t be able to make the trip to visit Cadence like they planned, as he was only diagnosed a few days ago, and they are still in serious shock. |
October 31, 2007 We tried to take Cadence to her eye appointment today, but she kept spitting up like crazy when she was in her car seat. That was what she did when she stopped breathing during the first car seat test, and the skin around her eyes was bluish colored, which is a sign that she’s having respiratory distress. Since the eye doc is two hours away, we immediately brought her back home. Thank goodness we were only ten minutes away from our house. This is the first time she has done this since being released from the hospital, so I am worried. As usual! My husband said, “Well, it is Halloween, we were bound to have a scare.” Another thing, my aunt gave me a Boppy chair. It is a wonderful, wonderful invention. Whoever invented it deserves a big, sloppy kiss. It’s this little chair Cadence reclines in, and it vibrates and plays music or nature sounds, like rain falling or a heart beating. She loves the chair. Unless she is hungry, if I pull her out she throws a fit. Yesterday we took her to the pediatrician, who is only a few miles down the road, thank goodness. Our pediatrician is this Italian guy who has a thick accent, and sometimes I can’t understand what he’s saying. He’s funny though, the way he talks to Cadence when he’s examining her. They let us wait for our appointment in a private room, which really reduces my stress level. She now tips the scale at a whopping 7 ½ pounds. She’s gained a pound and a half in two weeks. The doc was very pleased and so am I. I knew she’d gained weight, but I had no idea she has gained so much. This is a good sign. |
** Images For Use By Upgraded+ Only ** This is Cadence at around 8 pounds. She's grown so much since coming home from the hospital! October 26, 2007 Sleep deprivation, especially when prolonged, can cause a multitude of adverse effects. Blurred vision, aching muscles, decreased mental acuity and concentration, headaches, and irritability are some of the more pleasant ones. As the lack of sleep continues, the body degrades, and the symptoms become more serious. Hand tremors, color blindness, hallucinations, and psychosis can result, and this is only the tip of the iceburg. Sleep deprivation is used as a form of torture. The victim is kept awake for days on end, then when finally allowed to sleep, they are abruptly awakened and interrogated. Said one torture victim, "In the head of the interrogated prisoner, a haze begins to form. His spirit is wearied to death, his legs are unsteady, and he has one sole desire: to sleep... Anyone who has experienced this desire knows that not even hunger and thirst are comparable with it." I can relate. I would challenge this torture victim to spend one week with a colicy baby! Not only am I abruptly awakened after finally being able to go to sleep, but add in vomit all over my clothes, baby poop smeared on my jeans, incessant laundry washing and housework, and the inevitable argument with my husband over who's going to feed the baby at the butt crack of dawn. I daydream of sleep. I fall asleep standing up like a horse. I fall asleep sitting on the couch with the bottle sticking out of the baby's mouth. I start to nod off when I'm in the shower, when I'm doing the dishes, when my husband is in the middle of telling me an anecdote about his day at work. When I do sleep, I immediately jump straight to REM's, and when I am abruptly awoken by Cadence's cries (which are better than any alarm clock on the market), I feel as if I have no brain functioning left. I'm a zombie, meandering about the house with the bawling baby in tow. I try to think of a song to sing her, but not a one comes to mind. If someone were to ask me to recite the multiplication tables, I'm sure I would fail miserably. But on the other hand, I am lucky. Cadence could be on an oxygen machine, on a heart monitor, have a colostomy bag or mental retardation. Amazingly she has none of those. She is simply a normal full term baby now. She's like a machine whose sole purpose is to scream, spit-up, pee, poop, and eat. Just when I feel like I'm about to meltdown, she smiles. Her little cherubic face lights up, her big blue eyes glimmer. In these times, she reminds me of the little redheaded baby from the movie "Willow". She's devastatingly lovely, and I marvel that my body made her. These sweet moments make up for all of the rest. One day she'll start her first day of kindergarten, she'll get her drivers license (God help us), she'll graduate high school. I know it will happen quickly, before I know it. So even though I'm falling asleep in a standing position like Mr. Ed, I realize that one day in the future I'll remember her as a tiny newborn and miss it. |
| October 19, 2007 It feels like eleven weeks lasted a lifetime, but Cadence Snow is now in her rightful place, in our home. Finally our little nucleur family is complete. After weeks away from my house, my hubbie, my four cats, living day in and day out in the hospital. I feel a little like I'm coming down from an incredibly long drinking jag. But I'm also blissful. She has no respiratory or digestive abnormalities. She's been tested for mental retardation and passed with flying colors.We have to take her to the eye doc once a week, to the pediatrician several times a month, and back to KC in a couple of weeks for a follow up appointment. So we'll be shuttling the poor girl back and forth quite frequently. She's a little redhead and has the temper to go along with it! Her screams reach ear-splitting decibels. I'm already reading to her, which is highly recommended by those in the pediatric field. Tonight I read her Rapunzel and Jack and the Beanstalk. She just sat in my lap and smiled and grunted. (Preemies grunt alot, but the nurses said Cadence grunts more than the average bear). I plan to expose her to a stimulating environment. Some preemies can have learning disabilities or fall behind in class. But working with them they can excell-just like any child. I'll teach her to read and write, about art and literature, and her papa can teach her math and science. She'll be a little whiz. I still get paranoid (there's that word again) that she's going to stop breathing or get sick, but each day I feel more and more optimistic.I feel like we're on the home stretch. Once the problems with her eyes have resolved themselves, I'll take a heaving sigh of relief. But I won't have much time for it, because the little rugrat keeps me so busy. |
October 16, 2007 The eye doc experience was a nightmare. We had to go to an ophthalmologist clinic that is on the fourth floor of Children’s Mercy Hospital. The waiting room was so crowded that patients were waiting out in the hall. Since the very beginning of our hospital experience, the docs and nurses have warned us not to bring Cadence into a crowded place, because she could get sick. They were emphatic on this point, so much so that I am brainwashed and completely paranoid. So I’m wondering why they sent us to this clinic, where there are literally dozens of people around, most of them children. We were specifically warned to keep Cadence away from other kids. So the whole time I’m sitting in there terrified that someone is going to give her a bug, and everyone wants to touch her. The mother bear came out in me, I wanted to say, “Get the fuck away from my child!” but instead I was polite and simply said I would prefer it if no one touched her. People seemed miffed at this, but I don’t care. If they were in my place they would react in the same way. Cadence’s eyes are the same. They haven’t gotten better or worse. The doc seems to think that the ROP will correct itself, and I’m hoping that is true. I can’t stand the thought of my poor child going through surgery. She's been through enough already. |
October 15, 2007 Cadence has been officially released! She passed her car seat test with flying colors this time. I was holding my breathing for three hours. On the way home I have to sit in the back seat with her, so in case she does stop breathing I can administer CPR. We have to see the eye doc to check her ROP before we leave the hospital. I hope the ROP has stopped, she’s at a stage 2 in one eye and the other is still considered premature. Since her retina could detach quickly, we have to take her to see the eye doc once a week. It’s difficult finding pediatric ophthalmologists that are qualified to check her for ROP. The closest doc we could find is in Springfield, which is a good two hour drive from our house. I’m worried about her being in the car seat for that long, but she could go blind if she isn’t checked regularly. |
October, 2007 She’s in a new pod now, in another part of the ICU. We’ve just taken a giant step backward, and I’ve fallen into a deep depression. Sometimes I feel like we’ll never get out of here, and I keep worrying that something terrible is going to happen. I’m waiting for the bottom to fall out. I try to stay optimistic, but each time I feel hopeful something happens. The doctor stopped by and had an interesting request, which is helping me to see the silver lining. He’s doing a research study on preemies, and he wants Cadence to take part. Since Cadence is so much healthier than other preemies, he wants to compare her DNA and genes to other children who have serious problems, like those who have to have colostomy bags, be on oxygen machines, have mental retardation, etc. They want to draw a vial of her blood. I signed the consent form. I figure if Cadence can somehow help other babies, it’s worth it for them to stick her one last time. So I guess if the doc thinks she’s in such great shape that he wants her to be in his study, then I probably shouldn’t worry quite so much. Mom says, “Get used to worrying, now that you’re a mother you’ll be worrying about Cadence your whole life.” |
October, 2007 Cadence has been moved back to the ICU. Yesterday she stopped breathing during the car seat test. The alarms started going off, and Mom and I were so panicked we couldn’t even get her out of her seat. The nurse ran in and pulled Cadence out, then started to revive her. She told me to call the front desk and ask for more nurses, and she had to tell me the extension three times, even though it was only three numbers, because I was so panicked I couldn’t remember. She told mom to go out into the hall and ask for more nurses, and within just a second a pack of nurses stormed in. They gathered around Cadence and I ran out of the room and into the hall. I was extremely distraught, crying and upset. Several nurses came to calm me, but I was beyond calming. Finally our nurse came out and said that Cadence was fine, they just had to administer oxygen to revive her. She also said that Cadence would be moved back to the ICU for five days, and then we could give her the car seat test again. I am crushed. I was so hopeful that Cadence would be able to leave soon, but now we have to wait another five days. I just want her home with me! Sometimes I ask myself, “Why me?” But there’s no answer to that, except for the fact that I have a problem carrying babies. |
October, 2007 Cadence has been moved to a private room, and she is going to be released tomorrow. She has one more hurdle to cross, the car seat test. Sometimes when preemies are seated in an upright position, their head will loll forward and they can stop breathing. Since our trip home will take three hours, she has to prove that she can stay in her car seat for three hours without any breathing difficulties. The nurse says we’ll administer the test today. I’m hopeful, because she has been doing so well. Yesterday we took the CPR class. I was glad to take it but I really hope I never have to use the training. |
September, 2007 I am livid! The ICU is basically one huge open room, with the incubators in rows. There are no walls to separate each pod, only flimsy curtains. The baby right across from us had visitors today, his family, and they are all sick. They’re coughing and sneezing all over the place. I’m paranoid about this because if Cadence gets sick, she could die. Just a regular cold could prove fatal. Mom and I complained, and the nurse said that the family claimed they had allergies, but I distinctly heard the mom tell her kids not to touch the baby because they’re ill. I wanted to go over and say something, but I restrained myself. If I see them again and they are still sick, I will say something! On top of it, the father was drunk, he was weaving all over the place and cursing, and yelling at his kids at the top of his lungs. Everyone was obviously annoyed, but no one said anything. |
September, 2007 Today Mom and I went to the Nelson-Atkins Museum of Art. It was a soothing experience, and a pleasant distraction from all the chaos. I particularly liked the modern works. I saw a Kooning, a Picasso, a Warhol, and many others. I enjoyed the photography exhibit as well, it really inspired me to take a photography class at the university. There was an ancient Greek sculpture of a lion that was hundreds of years old. I’m not sure I’ve ever been in the presence of something that old, with that much history. The sculptor had to guess what a lion actually looks like, because he had never seen one, so it was a close, but not exact, depiction. I wish I had some artistic talent, but the only things I can draw are stick figures. Oh, well. |
| September, 2007 Fear and stress have a destructive effect on everything. Today I found two gray hairs! I’m only 28 years old. Can stress really give a person gray hair? I remember on Poltergeist how the mom had the gray in her bangs after everything she had gone through, but I always thought that was a myth. I plucked them immediately. I hope ten more don’t grow in their place. (Another myth?) Chris and I are arguing quite a bit, which is unusual for us. We usually get along really well, and on top of everything else that’s happening, my stress level is through the roof. He’s at work all the time, which isn’t unusual either, because he’s a total workaholic. Not only does he work seventy hours a week, but he goes to college part time for his electronic engineering degree. So he has little free time. I know it’s important for him to work-we have to pay our bills-but I think he’s focusing on work and school as a way to escape the stress. His company has been extremely understanding and has offered to give him more time off, but he hasn’t taken them up on it. The other day we got into a fight because I wanted him to stay at the hospital with me for longer than a few hours, maybe stay the night at the Ronald McDonald house. I really need him right now. My mom is here but she’s not Cadence’s parent, only Chris is a parent and I feel like we’re in this together. I begged him to stay, and I have never begged for anything in my life. But he refused to. After the argument, I watched him pull out of the Ronald McDonald house parking lot and I was literally broken hearted. I know he’s going through a lot. He saw his wife having seizures and had to call an ambulance. Then when the paramedics came (I don’t remember this) I attacked them. One of the side effects of the seizures and high blood pressure is that I was “combative”. So the paramedics are trying to get me into the ambulance, and I’m attacking them and screaming, and our neighbors are in their front yards watching the show. Finally they get me into the ambulance and they pull away from the curb with no lights on. Chris is in his car about to follow, and he thinks that I died. Then at the hospital, he sees Cadence born, and she’s so tiny…I need to try to be more understanding, but it’s hard because I really, really need him right now. The stress is coming out of me in my sleep. Mom says that on several occasions I have climbed out of bed, still dead asleep, and paced back and forth, screaming, "No, not again, not again!" over and over. I don't recall this, but she says that she gently leads me back to bed and I'll calm down. I'm worried about Cadence sleeping in our bedroom with us once she comes home. What if I sleepwalk and knock her out of her bassinet? What if I pick her up in my sleep? It's a disturbing thought. |
This was from sometime in September Mom and I have been at the Ronald McDonald house for eleven days now. A typical day goes as follows: We wake up, and in a zombie like state we drive to Starbucks for a venti White Chocolate Mocha. Once the caffeine begins to work its magic, we travel to the hospital and try to find a parking space within the labyrinth of the parking garage. We take two elevators (I’ve never been on elevators so much in my life). We navigate the maze of hospital corridors, and we know the route like the back of our hand. We enter the neonatal ICU, scrub up, and go visit Cadence. We stay for several hours, but we must be back at the Ronald McDonald house by 6 for dinner. After dinner, we return back to the hospital to visit Cadence more. Days are blurring by. I don’t know what day it is and I don’t care. I just want my child home! The chaplain said that it might be a good idea for me to take a break from the hospital for a while, so Mom and I might go to the art museum later. I don’t like not being at the hospital, I feel like if I’m not there I’m being a neglectful mother. But I’m also emotionally exhausted. The hospital is decorated in such a cheery way, but beneath the façade is a reservoir of sadness and worry and pain. Every day I see someone crying, or a child having surgery (they perform the surgeries right there in the open). Maybe the chaplain’s right; maybe I should take a break. |
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