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My son turned a year old in February. I never wanted to write one of these, but I'm hoping posting this will help me in some ways. I'm bitter and angry about my birth, and hold a lot of blame on the midwives and doctors. I’ve had a hard time with everytime and still struggle daily with things. My csection was the most traumatic experience of my life. It’s not pain, it’s all emotional. Prior it was a root canal.. being awake is the most terrifying thing for me. I can’t stand it. Self checkout makes me nervous as I hear the beeping that reminds me of the NICU. Every little abnormal thing my kid does puts me on edge. It’s hard.
And I’m sorry this is so long. Honestly, I’m hoping just writing it out will help me. It's really long.. and I'm really sorry.
....
Intro:
I had an awful pregnancy. I was sick from week 5ish on. Throwing up every single day. I spent time in the ER getting fluids, receiving oral zofran daily, but still threw up every day until I delivered. The ER diagnosed me with hyperemesis gravidarum at one point. I fought insurance for more zofran, was told no, to try this and that. I wound up losing 20lbs by 18 weeks. I gained it back, then another 20lbs by the end.

My blood pressure had started to increase around 35-36 weeks. Not much, and still within normal range, but when you are normally 90/60 it is abnormal. I commented every time I went in, they said "it's fine. Finally at 38-39 weeks they demanded I do a 24 hour urine sample due to proteins. Fine. This is early in the week. I do it, turn it in, and wait. I get a call the next day, telling me I have to redo it as it was never picked up. Are you kidding me? At this point I have to go to the hospital to get it. Fine. It's Friday, I leave work early, telling my boss what is up and joke that I won't be back next week.

I submit my 24 hour jug on Saturday and go about my day. I'm told to take it easy and rest. Hah. Goodluck. I've got work to do and other things to get done, especially if I'm having this kid soon. Saturday night I get a bath, then around 9:30 my phone rings. It's my midwife. My levels are way too high and I'm to go to the hospital right now to start induction. I freak. Seriously, freak. I get a shower to at least wash my hair before I go in. My husband tries to calm me but I continue to freak out.

I get checked in to the hospital and they place this tab thing inside to try to start dilation. They tell me they will start pitocin in the morning. It's around 1AM when my husband heads home to get some sleep and take care of our dogs. He comes back in the AM when they start the pitocin. My parents also head up to help take care of the dogs while I'm in the hospital.

My breakfast sucked. I don't eat most meats, so I'm stuck with nibbling crap food. I didn't even get a choice. Pitocin is started and I spent the day on it with no progress. It was awful. I didn't do an epidural as I didn't want one. My plan was "go with the flow" and just see what I could do. They stop pitocin in the afternoon and allow me to eat dinner and rest over night. They brought some funky meat dinner. Didn't I tell you I don't eat meat? Figures. I convince my husband to get me something to eat before leaving. My husband goes home for the night and I'm left alone.. again.

It's Monday now and they start pitocin again. My parents and husband hang out in the room while I sit there struggling. I remember at one point wanting to snap at them to just shut up. It was awful. They bring lunch, but I'm not allowed to eat. Doesn't matter, it looked disgusting (another meat form) anyway. My mom ate it and my dad and husband go out to lunch. It's around 1:30 and I decide I need an epidural. 2 days on pitocin will do that to you. Getting the epidural was awful. I hate needles with a passion. I freaked to the point they told me they wouldn't be able to do it. I manage to get the epidural and things go better.

Prior to the epidural I barely dilated. I finally had progress with the epidural. My water was broken and things continue to progress. Monday night, 10-11, I was told I could start pushing. By 1AM the baby had barely progressed. He was face up. We knew this all along but had hopes he'd still come on his own. The doctors recommended a csection, I said no, I was too scared.

Let me explain something. A few weeks prior to delivery I told my doctor "If I have to have a csection I want to be put under". She told me we would discuss it when we got there. She was the one there for my delivery, of course she didn't bring this up at all. I'm angry she didn't put anything in my notes about it, or even remembered how terrified I was.

It took over an hour, probably near 2 for various doctors and my husband to get me to agree to it. I refused to talk to my parents, but my husband told them what was going on. My husband told them to just do it, but they wouldn't listen to him. I was exhausted already from being in the hospital for 3 days and wasn't in the right state of mind. All I could think about was how I had to be awake for surgery, which I did not want. An anesthesiologist told me he could give me something to help calm me. It wouldn't knock me out, but it would help the anxiety. That right there got me to agree. Where was he at the beginning??

3:53AM, my son is born. I had 2x the amount of fluid as normal, and he had to be pushed up from the birth canal to get him out. He didn't cry. I can't remember his APGARS right now, but they were within normal range. CPR was performed to get him breathing and he was brought over to me. I remember the anesthesiologist rubbing my head and arm the entire time, trying to keep me calm. My husband watched the surgery. That anesthesiologist is the one thing good I remember from this whole thing.

My husband left with our son to go to the nursery. I forced him to go, as I originally told him he couldn't leave my side. I just felt something wasn't right (he didn't cry, remember). DS is taken to the nursery and bloodwork is run. My husband convinces the nurses to let my parents walk back and see him as they are here from out of time. They are able to view him from the window.

I get moved to a room and we find out our son is being moved to the NICU due to high white blood cell count. Tests are being run. We sleep as we are exhausted (my husband stays at the hospital at this point). I force my husband to go to the NICU to see him by late morning, as I was too exhausted and nauseous to go. He brings back pictures. I finally go down that night to see him. He's got an IV in his head and is hooked up to all sorts of monitors. We enjoy time with him and then DH leaves to go home that night and sleep some.

Sometime between 4-5AM on Wednesday morning I have a NICU doctor in my room. He tells me I need to come to the NICU and sign papers, our son needs to be transferred to another hospital. He had a seizure. I go in, they call my husband for me, and they call my best friends mom (she works at the hospital). They both rush to my side. Thank god for her, she was my advocate for the entire nightmare. She explained everything the doctors didn't and helped calm me. Her daughter (my best friend) was born before 30 weeks so she went through the NICU stay as a young mom.

Papers are signed to transfer him, the transport team comes and they whisk him away. It sucks. I go back to my room and argue with my husband that he needs to go to the other hospital. He doesn't want to. He's scared and I know he doesn't deal well with these things. I convince him to call his mom and she gets him to meet her there. He leaves. I'm alone, again, until my parents come in.

I receive phone calls from the new NICU about needing to place a PICC line and I didn’t sign the papers. I tell them fine. I receive another call about needing transfusions. I tell them fine. I argue with my husband as to why I agreed. Because what else am I supposed to do?? A CT is run, nothing shown, an MRI is run and sent to be looked at. He has numerous chest xrays to place the PICC line.

My husband calls to tell me they were ushered out of the room. I call the hospital to find out what is going on. Turns out this is when they were doing the PICC line. I call the hospital constantly during the day demanding updates. Wanting MRI results. Wanting whatever info I can get.

My friends mom manages to get me discharged on Thursday, a day early. I couldn’t handle being in the hospital with brand new babies on either side of my room. It was depressing. It was awful. My parents would visit during visitor hours (he was born in flu season, so limited hours), but thankfully my nurses never kicked them out. When they were gone the nurses hung out with me. I got up and walked around. I didn’t not sit still.
Thursday we went to visit our son. I got to hold him for the 3rd time, except I had to wear gloves and an awful yellow gown. No skin to skin. We met all his doctors. Argued about them needing to do a spinal tap. He did not have an infection, they are wrong. We caved, they tried, 3 times, and failed. They finally gave up. He was on infection meds, which we wanted him off, they refused, citing infection. We told them it wasn’t the case.

While at the NICU that day the neurologist called down to chat with us. We talked. We got our MRI results. Our son had a stroke sometime around delivery. A stroke? Yes. But they don’t think the seizures are linked since it was in the occipital lobe. Oh, he had more seizures on his way to this hospital. I believe we found out it was a total of 3? I honestly can’t remember now. I try not to think about it. He received 2 loading doses of phenobarbital though, and was receiving a normal dose throughout the day to keep him constant.

EEGs are run, video EEGs, an EKG, other tests. All trying to determine what else could be wrong. He’s taken off the infection meds by day 3 as it isn’t infection (hey I told you that 3 days ago). He’s moved to a normal crib. We still can’t pick him up though as he has a PICC line. Do you know how much it sucks to not be able to pick up your old kid? I have to ask when I want to hold him, ask to switch people, ask to put him back. It sucks.

All tests come back fine. At this point we have been reading non stop on stroke. We had not seen his MRI. Back and forth to the NICU every night, as DH has to work during the day. He went back as he wanted to be able to take off when our son came home. I agreed, even though I was miserable sitting home, alone. Well, with our dogs. I sat on the couch for days and just stared at the TV, which I didn’t even turn on half the time. I didn’t want to do anything. I barely ate.

I didn’t say this before, but I did pump. I started once he was admitted to the (first) NICU. I wanted to start sooner but I was miserable. So between sitting at home and doing nothing, I pumped. Every day. Every 2-3 hours. All night.

A week goes by. We start demanding a meeting with the neurologist. We get phone calls. No, we want to see his results. Finally we get that set up. We get a phone call from his neonatologist. They gave him donor milk instead of my milk. What? Are you kidding me? I flip. The guy agrees to call me back once he finds out more info. He explains donor milk to me. I text my friends mom. She reassures me and calms me. Phone call received from neonatologist explains what happens and new measures taken to prevent it from happening again. Staff has a meeting, some other things.

During all our visits we ask to see bloodwork and check levels. I feel like we were the only parents wanting to see numbers. We knew his AST and ALT were through the roof. There were other things too, but these were the ones that were keeping him there. We saw the phenobarbital level being way too high. We researched. No wonder our child was so sedated.. phenobarbital is a sedation drug. His levels were close to 40, or maybe they were over. Again, it’s been a year.

My husband researches drugs. He wants him off phenobarbital ASAP. It’s a development delay drug. Our son had a stroke, why would we want to keep him on this while his brain is in the prime time for developing? We meet with the neurologist, who by the way shows up hours late to our meeting. The NICU had to call to find our updates, she never bothered to update. My husband got on her case about it, she freaked, wanted to reschedule. We demanded the meeting then. We see the MRI. The stroke is small, considered the “perfect” location. Center of the lobe, neurons could easily route around it. We ask about new meds. She agrees and asks what do WE want. Say what? You want me to dictate what my not even 2 week old child gets? We tell her Keppra. It’s newer, less delay info, and looked okay from our research. She agrees.

We got discharged after 12 days… appointments to be made with neurologist, hematologist, pediatricians, hearing tests…
Currently we are 13 months old. No complications have come from his stroke and his seizure meds were weaned at 7-8 weeks. His been discharged by all specialist. Early intervention follows us but we have yet to utilize them. We are still not staying any words, but I try to not freak about it yet. He walked by 10 months, so maybe he’s just focused on physical things. I am terrified for the future and we have no idea if he will have any issues. We won’t know until he gets older, starts going to school, learning. I still wonder all the time if they didn’t delay the csection if he wouldn’t have had a stroke. I wonder, I blame, and it sucks.