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Thursday, May 24, 2012

The Pain is Still There

Image found here.

It's taken me 17 months to write this.

I'm still angry.

I'm still hurt.

It took me a while to realize that I suffer from a little PTSD because of it.

I had my plan all worked out. My beautiful son (I knew in my heart he was a boy) was going to be born at home. He was due on January 25th, but I wanted him to be late - so he could be born on my sister's birthday. My midwife and I had talked about how things would go.

I wasn't even done shopping yet. I still had another month to get things done, so I wasn't worried about it. Thank goodness we at least had the car seat!

When my water broke that night, more than 4 weeks before my due date, it was easy for me to deny that this was actually labor. But when my contractions started, I had to admit that this was it. The midwife was out of town at a convention and she and I decided over the phone that it was probably best for the baby that we go to the hospital.

I talked about his actual birth story here, so I won't repeat that part now.

While his birth was stressful and nerve-wracking, I commend the doctors, nurses and ambulance workers who took good care of me. I didn't plan on having a hospital birth, but they helped me manage to have my completely natural birth that I wanted.

But my little baby had some fluid on his lungs and wasn't breathing right. I trusted all the people in that delivery room that they were doing the absolute best for my tiny son. That highly industrial and impersonal room felt like a protective little bubble where everyone cared about how I felt, and everyone cared about what was best for my little boy.

But then, he was whisked out of the delivery room and into a world of bureaucracy and hospital protocol that I couldn't stop no matter how I tried.

I went into my room to take a little nap while they got him settled in the NICU. When he was a couple hours old, I went to see him. He looked so tiny in his little bed. I could barely see him for the little c-pap breathing mask* and all the tubes. I could hardly even tell that he was my son. The nurse taking care of him told me that I shouldn't touch him too much because he was having sensory overload issues. She brought me a stool, and I sat next to him, stroking his foot from time to time. I just wanted to pick him up and hold him. But she'd said not to touch him. She's a professional, and she was taking the best care of my son, right?

*It was so hard to comprehend that such a tiny piece of equipment could even work!

I look at it now and think of COURSE he was having sensory overload issues! Strangers kept touching him and poking sharp things into him and messing with him. He didn't know where his mother was. Maybe if I'd been ALLOWED to hold him and talk to him, he would have been better!

And then there was the confusion when Surfer Pirate got there, and I took him into the NICU to see him. They had moved him to a different spot in the room, changed his nurse, and hadn't notified me. So I took my husband to see a totally different baby! Underneath all those tubes and machines, who could tell? I was horrified that I couldn't even pick out my own baby through all the mess! Why didn't anyone tell me he'd been moved??

Somewhere during the next day, they moved him into one of those little enclosed bed things. Thankfully, the tubes were gone! I could at least see his sweet little face. This new bed and new spot meant another nurse. Seemed like they were always changing nurses. It was confusing, but I don't really have a problem with that part.

They let me nurse him. Which meant I got to hold him! But there was always someone there, determining how long I could hold him and when I could touch him when he was in the little bed. Rules governed EVERYTHING. That's when I became a milking cow. I was to nurse him every two hours. I would nurse him, and then go back to my room to sleep. Heaven forbid I didn't show up every two hours like clockwork, or they'd be calling me to inform me I needed to get my butt down there! I would show up 5 minutes late, surrounded by guilt, and would get there to find him sleeping! They'd made me feel guilty that he was starving and screaming, and he wouldn't even be awake!

I was so sick of hospitals! So sick of rules! So sick of people not letting me take care of my son the way my instincts dictated!

I had no idea it was just going to get worse.

When my mother had me, she informed the doctor that she would be taking me home the next day. And she did it! I tried that trick. I told the doctor that I would be taking my son home before Christmas. Didn't work. I could swear I saw a mocking look in the doctor's eyes when he informed me otherwise. They were trying to get my son to regulate his temperature, and the nurse informed me that there were specific rules about for how long that would take. THIRTY SIX hours was the rule!

No one seemed to care about the fact that my son was FINE! He had passed every single one of their milestones much sooner than they expected, but they still kept following all their strict little rules! I was so angry I could hardly see straight! I felt helpless and trapped. I felt like these nurses (who were almost a decade younger than me!) were treating me like a 15-year-old unwed mother, not a 30-something experienced woman. I constantly felt like someone was going to pat me on the head any minute. It was a very condescending environment.

And then, a light. The doctor who was the department head of the NICU worked a few short hours. He looked at my son's chart and asked the nurse "Why is he still in here? He's more than ready to move into a crib." Then he patted the arm of this stressed, frustrated mother and assured me that they would move my son out of the NICU as soon as possible.

True to his word, my son was moved to a crib. Still in the NICU, but no more machines. He still had an IV - in his head, poor baby - but otherwise, my little boy was allowed to breathe on his own and regulate his own temperature.

And then the blessed moment when my little boy was released from the NICU! They told me they still needed to keep him under observation, so we wouldn't be able to go home on Christmas Eve, but possibly the next day! I couldn't think of a better Christmas present!

The move to a pediatric room* meant another new doctor. Another Protocol, Protocol, Protocol doctor. No longer did I have the wonderful NICU doctor who knew my son was fine and shouldn't be there. I'm not a racist person, but it didn't help my frustration to have a doctor who didn't speak English as his first language. Not only did I feel like the rules were more important to him than my son's well-being, but I couldn't understand half of what he said!

*Yeah, that was fun. Being the only adult sleeping in a kid's bed in a pediatric room. I was no longer a hospital patient, so I couldn't stay in the maternity ward with the other new moms. My son was the patient, and that was HIS room.

We had a few blissful hours where it was just my little family in a hospital room all together. No machines. No nurses telling me when I could and couldn't hold my son. We were still stuck in the hospital, but I finally felt like I could breathe!

It didn't last.

That night, they informed me my son was jaundiced and would have to go under the uv lamp. Rules started all over again. I could only have him out of his little crib for 30 minutes at a time, every two hours, for nursing. Again, I was being told I wasn't allowed to hold my son!

To add insult to injury, the next day, the sun came out! The days before had been grey and snowy, but now the glorious sun was out! Sunshine! The best thing for jaundice! Yet they STILL wouldn't let me just sit with my baby in the sunshine. He had to stay under the lights. Rules, rules rules. Protocol, protocol, protocol.

By Christmas Day, I was stir-crazy and about to lose my mind. Christmas in the hospital is HORRIBLE. Add to that the fact that our truck broke down after Surfer Pirate and Pirate Munchkin had arrived. We had no money, no transportation, and we were stuck in the hospital on Christmas Day. The hospital's social workers were amazing! They set my little family up in a really nice hotel and arranged for cabs to shuttle them back and forth. Then, they filled an actual WAGON full of gifts for my kids! The wonderful NICU doctor I loved so much showed up with his grandkids and gave my baby a Christmas ornament!

The only other good thing about the hospital was the chicken taco salad. I ate at least one every day I was there. They were amazing!

Christmas night, I'd had it. I couldn't sleep with that stupid blue light absorbing every color in my brain. I couldn't sleep knowing I wasn't allowed to hold my baby boy any time I wanted. At about 3 or 4 in the morning, I pulled him out of his little crib. I no longer cared if that was going to delay his recovery from the jaundice. I no longer cared if some nurse was going to come in and yell at me for not following the rules. I was tired of feeling like a worthless teenage unwed mother. I was going to do what I felt was best for my son - hold him in my arms. Holding him, I slept for the first time for days.

Finally, the next morning, they told me his bilirubin count was low enough that we could take him home! The doctor hadn't wanted to do his circumcision until just before we left. (Honestly, that doctor didn't want to do the circumcision at all. He very definitely didn't believe in it, but Surfer Pirate and I had very specific reasons why we wanted it done.) They took him to do that. Then he had to go back to the NICU for a little while for his car seat check (to make sure he was stable enough to ride in it for our long drive home). I didn't care. All those steps meant we were finally going home!

Everything was ready to go by 1:00 that afternoon. But we couldn't leave until Pirate Baby had peed. They needed to make sure everything was okay after his circumcision. So we waited. And waited. And waited.

One of my wonderful church leaders had driven halfway across the state to pick us up. He'd been waiting all day as well. Finally, around 7:30 the nurse decided our baby was just being stubborn and she would get the doctor to okay us going home. I didn't have much hope, but she came through for us! We were finally able to go home around 8:00 that night. This sweet man drove us two hours to our house, then had another 3-4 hour drive to his house. He had to have been incredibly exhausted!

But we were finally home!

I have almost no pictures from the hospital. Surfer Pirate hadn't made it to the hospital in time for his birth, so there were no pictures of him when he was minutes old. When he was a few hours old, he was buried in machines and tubes. I couldn't bear to take his picture then. I got the few pictures above when he was moved into the covered bed thing (for the life of me, I can't remember what it's called). Most of the time in the hospital, he was restricted from being held. There are no pictures of his proud parents holding him. No pictures from the first time he met his big sister. We have a few short videos of us at the hospital - one of the first time he was nursed, and one later on when he was first moved into the pediatric room. There are a few others from our hospital time- none of which are anonymous enough for this blog.

The days in the hospital were all a big blur. I honestly couldn't tell you if my son was in the NICU for 1 - 1/2 days or 2 - 1/2 days. It wasn't until looking at the videos we took coming home that I realized we were at the hospital for 4 days, not 5. Time didn't exist while we were there. It felt like we were trapped there for weeks.

I realize that the protocols and rules are in place to protect the hospital from malpractice suits. It's a shame that our country is so sue happy that it's come to this. But I feel robbed of memories. I feel robbed of those precious first days with my son.

No amount of malpractice protection can fix that for me.


TheUnicorn said...

I am SOO sorry that you are still mentally dealing with this, I had no idea. I, of course, know your story and what/how it all happened, but I didn't know it was still such a source of pain for you :*( I'm not sure anyone's birth plan really goes according to plan (and I have heard nurses roll their eyes at the words "birth plan") but yours went seriously batshit crazy and I'm not sure any amount of plans could have prepared you for what you went through! You really were at the mercy of medical rules and protocol. I am so very sorry, you know where to find me if a vent is in order (and I owe you one too!) For the record, those are incredibly precious pictures, what an adorable sweet little man you got there!!

MTGrace said...

Hopefully I got that out of my system enough now that a vent is no longer needed. But you know me. I have plenty more to vent about. :)

Thanks for all your support in the last year and a half.