Wednesday, November 13, 2013

World Prematurity Day

In honor of World Prematurity Day (Nov 17), this post tells the story of my pregnancy & my son's birth.

On this day 10 years ago I was just days away from being put in the hospital. How many days? I'm not actually sure. I don't remember the exact day I was admitted. I just know that it was the day after I sent out my wedding invitations & almost Thanksgiving.

My pregnancy was awful. Well, all my pregnancies were awful, but this was a different kind of awful. Shortly after finding out that I was pregnant, we had a miscarriage scare. I started bleeding. I had to leave work to rush to the ER. They said I hadn't lost the baby, but probably would. I was put on bedrest for a few days & then on extreme restrictions - lift nothing over 5lbs, do not sit, stand, or lie down for more than 30 minutes at a time, avoid all stress, etc., etc. At the time, my daughter was 5 & was just starting Kindergarten. I was not supposed to pick her up. I was working as a receptionist for the corporate office of a multi-state car lot. My job meant sitting at a desk for hours, interrupted by delivering messages, getting all the (often heavy) FedEx boxes ready to go out, & helping people in multiple departments with various projects, but I wasn't supposed to do most of that.

Not long after the miscarriage scare, another issue started. For reasons unknown at the time, my muscles started to hurt on a consistent basis. Since then, some have decided that I developed Fibromyalgia. I had a very difficult time sleeping because my muscle pain would keep me awake. Sitting at my desk for too long hurt. Relaxing seemed to make it worse, but I still wasn't allowed to do much.

The next fun issue was Placenta Previa. That was fun. In case you don't know what it is, Placenta Previa is when the placenta grows at the bottom of the uterus & covers the cervix. My mother started harassing me about having her church pray over me. She didn't mean for me, she literally meant over me. They wanted to stand in a circle around me while praying, because apparently the Judeo-Christian God doesn't listen if the sick person isn't in attendance. I finally gave in to get her to back off. I didn't need the stress of stupid arguments with her. I was already stressing because she was "helping" with wedding plans. My doctor told me that it was possible for the placenta to move on its own, especially given that we were still in the first trimester. It did. It moved just enough that it was no longer a severe complication that needed to be addressed at every appointment.

While all of this was going on, I was planning my wedding & trying to help my daughter deal with a horrible year at public school. Wedding planning was horrible & stressful. My parents are divorced. My mother does not know how to be polite & civil.  She suggested that, to make things less stressful, I do just one parents' dinner - my mother & step-dad, my dad & step-mom, and my husband's parents all together for a meal. She swore up & down that she would be on her best behavior, would be polite. Ha! She was rude, bitchy, sniping, and completely disrespectful throughout the whole thing. I was pissed. She was totally over-bearing with all wedding plans. I was constantly trying to hold myself back from screaming at her & removing her from helping me plan.

My daughter was having a terrible time in Kindergarten. She is so intelligent. She is so advanced. She was more than prepared for Kindergarten. Her teacher wasn't allowed to give her work more difficult than the rest of the class was doing, despite the fact that she was so far ahead. In order to give her something to do with her time, the teacher asked her to help tutor the other students. At parent-teacher conferences, I always heard the same things (the same things they'd been saying at her pre-school, too) - she is the smartest kid in class, she is so sweet & caring, she is an absolute joy to have in class. The teacher would show me the results from the most recent assessment (I swear they assessed them weekly), telling me "I'm not really supposed to show you these." She'd show me my daughter's score - way up at the top - and then show me the score of the next closest kid (the only other one who tested for the Gifted program when testing time came around in Feb) - at least 20 pts below. I'd ask, "Can she just sit in a corner & read while you work with the rest of the class on letter recognition?" The teacher would say, "The district won't allow that." I'd ask, "Can you give her Math worksheets from 1st or 2nd grade while the rest of the class learns to count to 100?" The teacher would say, "The district won't allow that."  You sensing the pattern? She started getting bullied at school. It got to the point where she'd come home at least once a week to tell me about how one of her "friends" (thank you public school for totally screwing up my kid's head by telling her that the kids in her class were her 'friends' instead of classmates, it took years to undo that damage) punched, bit, kicked, hit, slapped her. I would call the school, tell them what happened, and they would say, "We'll look into that, and if it happened, we'll take care of it." That was the answer I got every single time. I really wanted to hit that lady. Just a punch to throat to get her to realize that I was not playing around, I wanted something done.

Yeah, stress-free was obviously not an option, no matter how much the doctors told me I needed to avoid stress.

So, things went on like this. I was in excruciating pain most of the time. I was on & off bedrest. When I wasn't on bedrest, I was on major restriction. My doctor was afraid to do pelvic exams when I'd come in for my appointments, because she thought they might just make things worse. Nobody could figure out what was going on with me. Nobody had a clue why my body hurt so much or why so many things kept going wrong. I had quit smoking. I hadn't had a drink since I found out that I was pregnant. I was in pretty good shape before getting pregnant, though a little underweight. So, why was I gaining so much weight? Why was my body constantly screaming at me? Why was I sleeping even less than usual? The short answer, my body & pregnancy don't get along. The two pregnancies between my daughter & my son almost killed me & had to be terminated. I was terrified that my son wasn't going to make it. At least he wasn't killing me, though, so I kept fighting for him. I lost my job - too many days out sick from the pregnancy.

Shortly before Thanksgiving, I had an awful night. I could not sleep at all. My whole body hurt. I couldn't get comfortable in any position on the bed, the floor, the couch. My doctor had said that if my pain got worse, I should go see her. So, the next day, we went in to see her. I was 23 weeks along. She again told me she could find no cause for the pain. She decided to do a pelvic exam, because it had been so long since the last (as I said, she'd been avoiding them out of fear of what it would do to me or cause). She found out that I was dilated 3cm, my cervix had thinned, and my water bag was bulging. Not good! She sent me straight to the hospital.

Ah, the hospital. This part gets fun. We got to the hospital & I was immediately admitted. They gave me Magnesium Sulfate to stop the contractions that I wasn't having. After they gave it to me, they told me that it could cause fluid to build up in & around my lungs & around my heart, but it was a slim chance. Not too long after that, I was transferred to another hospital because that hospital had better High Risk Moms Unit & NICU. A few hours after getting to hospital number 2, I suddenly started having trouble breathing. They decided that I had pneumonia because I had fluid in & around my lungs & around my heart. Those symptoms sound familiar? They did to me, so I tried to tell them that the other hospital told me there was a slim chance that would happen from the Magnesium Sulfate they gave me. I had not been sick & this was far too sudden to be pneumonia, but they didn't agree. They were certain it was pneumonia & moved me to ICU. They decide I needed antibiotics, for the pneumonia I didn't have. They wanted to give me Zithromax. I said, "No. I can't take Zithromax. It causes uncontrollable & violent vomiting." They said, "We'll give it to you through the IV. That'll be fine." Yeah, not so much. So, they gave me Zithromax through an IV, shoved a tube down my throat, and left me in ICU for a few days. I was not a fan of having a machine breathe for me. I was also not a fan of the next machine which just forced air down my throat (but at least there wasn't a tube down my throat), so it was a struggle to breathe for my self or to talk. I really, really was not a fan of the antibiotics that they shouldn't have given me & that I didn't even need.

After a few days in ICU, they moved me back to High Risk Moms, because I was magically cured of the imaginary pneumonia (they still will not admit that it was not really pneumonia). They left the IV & antibiotics, though. A huge red welt had formed at the IV site & it hurt like hell. So, they moved the IV. A new welt formed there. So, they moved the IV again. They left me on this damn antibiotic for two weeks, moving the IV every day or two because a big, red, painful welt would pop up at the IV site. I was also getting steroid shots, to help his lungs develop. Plus, I was getting anti-clotting shots. I was having non-stress tests daily. I had blood drawn daily. It's a good thing I'm not afraid of needles. I was stuck on permanent bedrest, in the hospital, and told I was not going home until either my baby was born or I finally hit my due date.

I spent Thanksgiving in the hospital. My daughter was staying with family. My husband had to be at work too early, her daycare wasn't open yet. My original plan was that she would spend a week with my mother & step-dad, and then the next week she would stay with my dad & step-mom. That way, they each got a break & she wasn't being too much of a burden on anyone. My mother was not happy about the arrangement. She didn't want my daughter to spend any of the time at my dad's. She offered to keep her for the whole time I was in the hospital. However, we were looking at me being in the hospital possibly until mid-March (I was due on St. Patrick's Day), and it was only November. Plus, my mother was the one who kicked my daughter & me out of her house when my daughter was a baby, leaving us homeless. I didn't trust her with my kid for that long. Toward the end of the first week my mother had her, they were all up visiting me - my mother, my step-dad, & my daughter. My husband was there & so was my grandpa. My little girl was sitting quietly on the floor coloring, behaving so wonderfully. My mother was pissed at me for something, I think we had just argued (again) about my plans for where my kid would stay while I was in the hospital. My husband's parents got there. My daughter was in the way, so I started to ask her to move so they could get through. Before I got a chance to finish a single word, the bat-shit crazy bitch that gave birth to me kicked my daughter in her butt & yelled at her to move. If I wasn't hooked up to so many freaking machines, I would have jumped from that bed & punched her for it. Instead, I yelled at her for it. I told her she was never to lay a hand or foot on my child again. I told her that she was still my daughter, even if she was temporarily staying with my mother, so I was still the one that got to tell her what to do. She got angry with me & left. She left my daughter there, no place to stay, none of her stuff, just left. Luckily, my dad & step-mom were willing to help. They kept my little girl for the rest of the time I was in the hospital. She was taken care of. She got to come see me almost every day (that day was the first time my mother had brought her to see me since she'd gotten her). I knew she was in good hands. I knew she would be okay with them. I knew they were being good to her.

My days in the hospital never varied too much. My husband would pick up my daughter at daycare when he got off work & bring her to see me. My dad or step-mom would pick her up at the hospital on their way home from work. People would come visit me. I watched tv. I managed to catch quick 5 - 10 minute naps, but never really slept much. I had my daily non-stress test. The doctors & nurses talked about getting me into a pool to do exercises, but never got around to actually doing it. I did crosswords, wordsearches, & read. My husband would stay until he had to go home to get some sleep before work. I forced my husband to go see Return of the King with his best friend, because we had no idea if I'd get out while it was still in theaters. I refused to eat the food the hospital gave me (it all tasted like plastic), & had my husband bring me stuff I could keep in my room. I mostly ate Soup in a Cup. It isn't very good, but at least it didn't taste like plastic. Plus, it was easy to make. All I needed was hot water, which was easy to get. Also, it was cheap.

Three days before Christmas, I was at the end of 27 weeks along. I went into labor & there was no stopping it. Very early the next morning, I was still in labor. It was now day 1 of 28 weeks gestation. They did an unltrasound to make sure he was in the right position. Everything was fine. We were going to be okay. I was having contractions. My water had broken. He was going to be born that morning. As we waited for the epidural to show up, the doctor did another ultrasound, to double-check that my little boy was in the right position. He was still so small that there was still a lot of room for him to move around. While the doctor watched, my son moved sideways & tried to come out arm first. They couldn't move or turn him. We had to do a C-section right away. They swept me off to the OR, knocked me unconscious, and did an emergency C-section. It was 2 days before Christmas, and my son, who was due on St. Patrick's Day, was born.

When I woke up, I got to go see him in the NICU. I didn't get to stay long & I didn't get to touch him. It was almost a week before I saw him again. I had a fever & they didn't know why. Until they figured it out, I could not see my son. Everyone else saw him. I was so upset, I asked my husband to tell the NICU that nobody was allowed in to see him, except my husband, until I got to see him. It simply wasn't fair that everyone else got to see him when I couldn't. I spent Christmas in the hospital. My dad & step-mom brought my little girl & my brother & sister up to see me. We did presents in my hospital room. I was surrounded by people who loved me, and that was all that mattered - not the tubes, the staples, the pain, the morphine drip, the horrible sterile hospital smell - just them.

My sister came to see me. Even my mother showed up after my son was born. I had seen my step-dad since that one day, but my mother had avoided me. They finally figured out what was causing my fever. I had an inter-uterine infection. I was not contagious. I finally got to go see my baby boy. I didn't get to hold him every time I visited, but when I did it was wonderful. When you have a preemie, the only way they let you hold them is what they call 'kangaroo care'. They can't hold their body temps, so they need skin to skin contact when you hold them. I couldn't cradle him in my arms & look at his little face. Instead, I got to have him pressed right against me. The sounds of the machines invaded my dreams for months. The beeping, hissing, and worst, the alarms. I went home after a week or so. I came up to visit him every day.

He was 2 lbs 14 oz and 15 inches long. He couldn't eat from a bottle or breast & had to be fed through a tube. His lungs were underdeveloped, and he had to be on a respirator. He moved from respirator to bubble c-pap. He went back & forth a few times before he could stay on the bubble c-pap. He eventually made it to nasal cannula, then room air. He was on a monitor for Apnea (stop breathing for 20+ seconds) & Bradycardia (heart rate too slow). Every time that alarm went off, I stopped breathing & my heart stopped beating. Every time. I watched the families around us. Some of the babies had already had surgery. Some were in need of surgery. Some had colostomy bags. Some had IVs in their head. My little boy was a fighter, and he wanted out of there. We were lucky. I knew it then & I know it now. We were so lucky because it could have been much worse. Our biggest scare, was something I never saw coming. He had jaundice. Most babies do. A few hours under the bili-lights & it's all good. Not our boy, though. His bilirubin numbers were dangerous. They had him completely surrounded by bili-lights. It wasn't helping. They started talking about possibly needing to do an exchange transfusion, which is pretty much just what it sounds like. They remove your blood (all of it) & replace it with new blood. They said if his numbers got any worse, they would have to do one. I'm pretty sure he heard them talking about it, because his numbers started to improve almost immediately.

We were told that they usually stay in the NICU until about their due date. He came home almost a month early. At the end of February, he was ready to leave that place. We weren't totally in the clear, yet. He came home on a monitor that was incredibly loud & inaccurate. The strap went around his chest & it would go off whenever we changed his diaper, or he moved the wrong way, or it somehow got loosened. He had eye doctor appointments because premature birth can lead to Retinopathy of Prematurity (ROP). ROP can cause permanent vision loss or even blindness. Even those with mild case, which can improve & cause no permanent damage, are still at more risk later in life for other vision problems. About 400-600 infants become legally blind due to ROP each year. So, we had to take him in very regularly to have his eyes tested. He did not develop ROP, luckily. He was at higher risk for RSV, which he didn't catch. He has always been more likely to contract respiratory illnesses than anything else. I firmly believe it is due to his lungs being under-developed at birth.

We had regular appointments with the NICU Follow-up Clinic. They told us that his muscles were too tense & he might need physical therapy. They gave me stretches & exercises to do with him every few hours, in hopes that he wouldn't need therapy. It was around this time that I started homeschooling my daughter. I did those exercises & stretches and made sure he had tummy time ten times a day, like they told me. My days were busy, fitting schooling in with my daughter & meeting all my son's needs, but he never needed PT. They had him evaluated by an Occupational Therapist & a Developmental Therapist. They both said he was fine. He was healthy. He was happy. He developed in his own way & according to his own timetable, but he never gave us much cause to worry. He only slept ofr 20 minutes at a time for at least the first year. He couldn't eat very much at one time, so he ate every hour. He was exhausting to care for.

He is turning 10 years old this year. He is homeschooled. He is in 4th grade. He is doing fantastically academically. He is healthy. As I said, though, when he gets sick, it is almost always respiratory. He has ADHD & some anxiety issues, including possibly OCD, but he likely would've had those even if he had been full-term. We got off easy, and I know it.

Well, that's our story. I don't know that I could have made it through that if it weren't for certain people. Not only the things they did for me, for us, but jsut knowing that they were there, that they loved me, that they truly cared what was happening, it meant the world to me. My dad, my step-mom, my brother & sisters, my step-dad, my daughter, but especially my husband. We went through so much, so early in our relationship. He stood by my decision that nobody was allowed to visit our son in the NICU, before I could see him & again after I was allowed to (it was cold & flu season & people were going in there with coughs & runny noses, which are horribly dangerous to preemies). He supported my decision when I said nobody was allowed to come to the house to visit our son until after RSV was over. That decision did not go over well with some people. He worked so I could stay home with the kids. He agreed that we should try homeschooling after our daughter finished Kindergarten.      

This was shortly before he came home. The tube going up his nose is his feeding tube.

A few months after he came home. No more monitor. Hanging out with his big sis.