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Saturday, April 2, 2011

The hell that is...the NICU

Let me start with what a wondrous and fantastic thing a NICU is. NICUs save lives every day and are a necessity. We were lucky to have three at our disposal. The one in the hospital I delivered in wasn't able to properly care for William, it wasn’t a level 3, so he had to be sent either 50 miles away to Cincinnati Children’s or 20 miles away to Dayton Children’s.

For a hospital, a children's hospital is pretty nice. Being a children’s hospital it’s bright and has all sorts of cool colors and a tank with tropical fish in the lobby. The staff was mostly friendly and the food in the cafeteria was even pretty good.

But here comes to “woe-is-me” portion of this blog…from a new parent’s point of view…NICUs suck! Why? Well no one should have a baby in the NICU. The NICU means something is wrong, something is very wrong. Of course, in our case, everything ended up great. From wrong to great in one, long, drawn-out month.

I said earlier one of the worst things a person can suffer is infertility, if they want a child that is. If you have not experienced it, you will not understand. The same is true of NICUs. Yes, people say how awful it must be, and people probably think how tragic it is, but unless you have a baby in a NICU, you’ll never truly understand.

We had something great going for us. Our child was massive for his gestation and was in overall pretty good health. I never once thought we were going to lose him after he was born. I also knew he’d be ‘fine’ in terms of development. I just knew. Even having a somewhat healthy baby in the NICU (I use that term loosely, no baby is healthy in a NICU) is still very demanding, frustrating and at times, unbearable.

As with all things, I’m a planner. I planned to get pregnant right away when we decided to try. I planned on having a great pregnancy. I planned to have the baby born, wiped off, and then handed directly to me within the first minute of his birth. I planned to breastfeed immediately. I planned to stay in the hospital for 48 hours, and then with a baby in my arms, be wheeled out, get into my car, and drive home. I planned to take the baby to his nursery and go on with our lives.

None of that happened. We didn’t plan on his birth costing $100,000+ and I’m sure our insurance company didn’t either ;-)

He was born, fast, and he did not cry. He peed, on the Doctor, a sight I’ll never forget, but he did not cry. Four minutes passed and still no sounds of any kind. Finally, he grunted. Little, high-pitched grunts, they were actually cute. I could hear them but I could not see him. About ten minutes after birth, I got to hold him, for ten whole seconds. This was not what I’d planned.

He looked right into my eyes, which for some reason, took me by surprise. It was as if he knew who I was. I posed for two pictures and then he was taken away…for six hours.


03/27/11, 9:21 PM

He was gone for six hours, and I couldn’t remember what he looked like, other than what he looked like peeing on the Doctor at the moment of birth.

Since I had a baby, but ‘had’ no baby, I didn’t get that post-birth euphoria. Clearly I had no connection to that child in some other room who I couldn’t even remember what he looked like. That’s regret number one. Not getting to hold, nurse, or love-on him the moment of birth. I regret this so much since he is our only child and will be our only child. We waited so long for him and here he was…in some other room, where I couldn’t even see him. At least I got to hold him for a few seconds, so many preemie-parents don’t get to do that, and I understand that. But I can’t imagine what it’s like for them, all I have is my own experience.

I look at him now, a year later, and am filled with sadness when I think of his birth. I’m thrilled that he’s here and healthy and wonderful, it’s not that, it’s the actual process that was robbed from me. And since he’s our one and only, I’ll never have another opportunity to live that again. Of course, even if we did have another, there’s a much higher chance of them being a preemie too...so I'd probably just relive this all over again.

Six hours after his birth, a baby was brought to me sporting more wires and electronics than R2D2. He was screaming his head off, with about four ivs in his hand and a feeding tube rammed up his nose. I held him for about five minutes and posed for pictures.


Our first family photo, 03/28/10, around 3 am.

I remember he pulled my hair, something he still does, and pulled on my lower lip. Poor little fella was awful wiggly.

He didn't feel like my baby, he felt like…a baby. The paramedics were there telling me about the ambulance ride he was about to take and what the Doctors at the NICU so far away would be doing to him. It’s all a blur actually. I’d been awake for 42 hours by that point and had a 34 hour labor, 32 hours were unmediated, I was tired and I just wanted to hold my baby and sleep.

Well sleep I kind-of got, but the baby was whisked away in his little plastic bubble of a home and that was that. I had no visitors at all when I was in the hospital. The next day I asked Chris to not visit me, but to go spend the day with William in the NICU instead. For some reason, he had no trouble bonding with him, at all.

03/28/10, Chris and William in the NICU

Me, I sat alone, starving, in my hospital room finally looking at the pictures Chris had taken of William.

The next morning I was discharged and a few hours later, I got to experience the NICU. First, even though I had a great birth, I was bleeding very, very heavily. Getting into a car, driving 20 miles, walking a really, really long way to the NICU and then sitting straight up without my legs elevated isn’t exactly what you’re supposed to be doing immediately after giving birth. I had to pee about every 30 minutes and at the time, there was no bathroom in the NICU. Of course going to the bathroom right after giving birth isn’t exactly easy, or quick.

I’d barely make it to the hospital when I’d have to use the lobby bathroom. Then we’d get in the elevator and get to the NICU floor. Once there we had to remove our jewelry and our coats and wash our hands, surgical style. Then we had to be buzzed in. Once in I had to have my photo taken and I had to sign into a book on a special page just for William. Once they established I was family, we went to the other end of the unit where William was laying in his plastic isolette, still with tubes and wires. He was, of course, asleep…the entire time.

I was finally able to sit and hold him, but I didn’t really know him still. He still felt like ‘a’ baby. I brought with me the very little nourishment I was able to pump, which I believe was one drop and handed it to the nurse. He was under a little warmer and there were all kinds of monitors beeping and going off all the time. I didn’t know what they meant at first. Before I knew it, things like “cc’s” and “Bradys” would become part of my daily vocabulary.

03/29/10, My first trip to the NICU (It was his second day in the NICU and my first)

The NICU offered me the opportunity to stay across the street at the Ronald McDonald House, but I had out of town guests and two dogs to care for at home. Instead I drove and visited every day. Some days, I stayed for 3 hours, some days, 12. I held him and remarked how small he was. He was also slightly yellow at first.

I had no idea what his body looked like really, as he was covered from head to toe in swaddling blankets and a huge hat. I was told he was too young to eat, so he had the feeding tube instead.


The evening of March 29, 2010

He would occasionally forget to breathe, which would caused “Bradys” or bradycardia which basically was a lowering of the heart rate caused by apnea. Sometimes he'd just not breathe for up to 15 seconds. Those were the two main concerns, the two main reasons he was kept in the NICU.

He had a little help with oxygen but never had to be intubated. I still didn’t feel like a mother. He did not feel like my son. I think I was still in shock that my horrific pregnancy (which had been horrible since nearly day one) ended so quickly. On one hand I was glad to eat again for the first time in seven months, and all the horrible pain (round ligament and rib pain) was gone. I missed feeling the baby kick though, and I knew he should not have been born seven weeks and five days early.

He was a medium-rare baby and I know I ordered a well-done one. I had to send him back to cook more, and that would be our life for the next month.

Since I wasn’t home resting, bonding and being catered to by others, my bleeding got much worse. I was spending my days walking down hospital corridors and spending too much time in the car. Instead of sleeping, I was pumping every two-to-three hours around the clock. I worried about William that he’d take a turn for the worse, but slowly we began to bond some.

I’d get very anxious in the mornings. I’d wake up, pump and then I’d start to get very anxious to see him. I always waited until rush hour traffic died down since the hospital was downtown. Once on the road, I’d want to speed to get there as fast as possible. When I’d turn into the parking deck, all I wanted was to find the closest space (Which I almost never could…it was a very long walk from the parking garage to the NICU) and get inside ASAP. Once inside, I had to wait for the elevator. It seemed like such a long wait each time. Meanwhile I’d see children being wheeled in beds or chairs and babies being tugged in little red wagons. I saw very sick kids and very worried parents.

Once upstairs, I’d have to go to the bathroom and then I’d nearly run to the sinks to scrub up. I’d sign in as fast as possible and try to make it to William’s bed by 11am, in time for rounds. Rounds was the ONLY time I’d ever get to speak to a Doctor about him. I will say, the NICU did great by him, but we had some issues with a few nurses and I think I only spoke to a Doctor three times the entire month he was in there. I never really knew his true condition.

Also, NICUs never, ever, EVER give you an estimate of time your loved one will be in there. We assumed he’d remain until May 13th, his due date. Most of the time when I’d arrive at his bed, he was swaddled and sleeping, and all alone. Sometimes I’d not even see his nurse until two hours later. I’d get so pissed. We’re paying God knows what for around the clock-intensive care for our son and two hours goes by without a nurse even walking by? What if something happened to him? Who was checking on him? Babies are supposed to be held, not swaddled and left alone for hours and hours and hours on end!

That’s when the guilt sets in. Guilt…and heavily swollen feet. About a five days after his birth, I arrived at the NICU to find a massive and frightening IV poking out of my son’s head! It took forever to find his nurse but she informed me, very matter-of-factly that “Oh we blew out his veins in his arms so we had to go into his head.” Oh that’s nice. The words Blew and Out regarding my one-week-old don’t sit well with me.

Between the stress, and the physical activity, and the lack of sleep, my feet had swollen to, I swear, at least five times their normal size. I had no shoes that fit. I looked like Fred Flintstone. My legs too. What killed me was the NICU only had two recliners, the rest were very uncomfortable office chairs. Thank God I had an easy birth, sitting all day on an office chair would have been torture otherwise. I’d get so mad because I’d limp into the NICU, carrying 20 pounds of feet and legs and probably the same amount in a near hemorrhage, only to find almost always both recliners being used by………..men. Stupid, useless men who had NOT just given birth, who were not bleeding heavily, and who most certainly did not carry the entire Great Lakes in their legs and feet.

The only cure for swelling that bad is elevation and a lot of urination. Well hell, each time I’d go to pee I’d have to walk, far, and then scrub back in and hope my seat was still there when I’d return. My day would start out holding the baby and waiting for a nurse to tell me his condition. Then I’d go pee again. Then I’d have to go pump for 40 minutes or so. Then I’d get to feed him from a bottle, maybe 1 cc, and the rest via feeding tube. Then I’d get to change his diaper and maybe give him a bath. Then it was time to pee again, pump again, feed again, and repeat.

I’d leave before rush hour or stay until it died down. I’d glare at the young, healthy men in the coveted recliners and get more and more pissed off by the minute. I loved holding my son but holding a sleeping baby, while bleeding and needing to pee and ever-swelling legs, in the most non-private environment known to man is not only boring, but a hassle. No one told me about skin-to-skin with him at that time, which would have benefited us both. Heck I couldn’t get a nurse to tell me if he had a fever or not half the time.

Some nurses were awesome and I’d be so happy when I’d see their name on his own white-board. There was a male nursing student who I loved. He was sweet and attentive. I remember the day he removed the head IV. The IV was fine, it was the tape stuck to William’s hair that was the worst. It took 10 minutes, the entire time, William screamed in pain. All I could do was hold his hand, which was covered in tape and wires, and talk to him.

Some days he couldn’t maintain his temperature so he was under a heating lamp. Some days he was just swaddled, alone, and sleeping. Some days he was crying and wet. You never know what to expect in the NICU.

The first night I was able to see him, March 29th, I changed my first ever diaper. I had the help of two nurses who talked me through it. He had what we came to call…mustard-butt. The very liquid, very yellow poo that got everywhere. I did a good job though. Chris changed the next one and got pood on. It was projectile poo, something I thought was legend. It was then we realized we had yet another hurdle. William was allergic to milk-based-formula.

He’d lost a bit of weight and had diarrhea. I was told to continue with the breast milk but for supplement, he’d have to have soy. They said it could take up to three weeks for the soy to kick in and stop his runny poo, that’s three extra weeks in the NICU…not what anyone wants to hear. The good news was it only took a week.

About 10 days after his birth my feet had gone back to normal but I was still bleeding like crazy. The good news was they FINALLY put a bathroom (Just for moms) IN the NICU, so no more walking and scrubbing back in. It’s amazing how much we love the little things. It was like a dream come true. Around that same time he got moved from his larger bed, to a smaller one just across, next to the window, to make room for a new, smaller, sicker baby. Baby “C” was only 13 ounces and he got William’s old bed. I only saw him once, for a second…so tiny. We felt so bad for the parents, what they must be going through. Baby “C” was the smallest the NICU had ever had.

His parents couldn’t hold him. Couldn’t feed him. Couldn’t even touch him I don’t think. I’d see his Mom in the pumping room and she always seemed to calm to me. By this point I had fallen much deeper in love with William, though I still felt as if we’d not bonded totally yet. I couldn’t imagine being “C’s” mom. The good news is, Baby C is nearly one now and is doing great! He’s big and has been home for quite some time. See, NICUs are great things!

The first and only time I really cried about William was eleven or so days after his birth. Chris and I were holding him and he was actually awake. He’d been awake a lot lately. His eyes were the deepest shade of blue. He was a very quiet baby, who’d just stare into our eyes. By that point, he was getting 7 out of 8 bottles a day of breast milk, and the soy was working better for him. On that day, we had to leave and I put him down in his plastic isolette. His eyes were still open. I walked away to go sign out and I made the mistake of turning back to look at him and he had turned his head and was still looking at me. Now I know he couldn’t see me from 20 feet away, but I saw his eyes, which happened to be staring into mine and that’s when I finally lost it.

He was awake and…alone. No one was nearby to hold him if he cried. And we had to leave. I was miserable all night long. I wanted him home. I could give him food via feeding tube from home! His breathing was good but he still suffered from multiple “Bradys” each day. He’d have to go seven straight days without one Brady in order to go home. He’d also need to drink, on his own, 8 FULL bottles a day (full being 25-30 cc’s).

I vowed on that day never again to leave the NICU while he was still awake. One day, I stayed for I think about 18 hours, waiting for him to fall asleep and stay asleep. Sometimes I’d get 10 feet away and he’d open his eyes. Just knowing my baby was alone, surrounded by people, but still so alone, hurt more than anything. He needed to be held! This is when NICU hell kicked in.

The last three weeks were real hell. I wanted my baby home with me. I was robbed of a good birth. When I left the hospital on March 29th, a cold and rainy morning…it was just me. I had no flowers, no gifts…and most importantly…no baby. I was wheeled out, alone, while Chris pulled the truck to the entrance. I always thought I’d have balloons and stuffed animals and flowers and above all, a baby in my arms when I left the hospital. Instead all I had was a Candy-Striper who was, no joke, 19039 years old and got freakin’ lost wheeling me out the door!

I was home; up every two hours, but not to feed a baby….I had to feed a pump instead. I was always cataloging and chilling and transporting milk, and getting the NICU nurses to take the milk to refrigerate in a timely fashion was no easy task either. I just wanted him home. I thought I’d not truly bond until he got home. A good birth was robbed from me, and now the first month was being robbed too. A month I’d never get back. I’ll have a little newborn to hold and care for again. I’m also weird, my favorite baby-stage is the first one…the newborn stage. Those first few weeks when they do nothing.

I imagined I’d have that little baby of mine, at home with me, and I’d just hold him all day, and then put him in his crib at night. Instead I was 20 miles from my baby and he slept in a tiny isolette instead of the gorgeous nursery we’d created for him. Yes, I got to hold him every day but I felt like a part-time…nanny. I’ll never get that first month back, ever.

Each day I grew angrier and angrier. Hormones weren’t helping either. Really hardly any of my friends (but one) ever dealt with this. My sister-in-law had a few months prior, one of her babies came home after about two weeks, the other, after about three. I remember thinking at the time what hell that must be for her. Now, I was living it. So we had very little support from anyone, no one really knew what we were going through. Chris was back to work a week later and I was commuting, pumping, and holding and bathing him when I could.

As a new mother, no one was taking care of me. I was cooking and cleaning and running errands and…bleeding. I was so tired, but I had to keep pumping. Finally I was able to nurse him about two weeks in but he only latched for about three seconds and then fell asleep. He always fell asleep at the bottle too. Until he finished 8 whole bottles a day he could not come home. I’d get so mad, not at him, just mad, when he’d have ¼ or maybe ½ of a bottle and then fall asleep. Eating was such a tiresome thing for him at that time.

I was beginning to think he’d never come home. We’d see other babies leave and we’d be so jealous. Nearly all were there longer than him, were smaller and sicker than him. Why couldn’t he eat? No Doctor could tell us. The first month of his life was drawing closer when he finally finished a bottle. I’d just decided on that day, that he WOULD finish a bottle. I told him, my mother, and the nurse, “He will finish this bottle.” And they laughed. I said “No, this is a bunch of crap! He’s finishing this bottle and that’s the end of it!”

I undressed him so he was cold and kept him awake as best I could. I talked to him and told him to finish that bottle. He was getting close and I had a feeling that would be the day, and it was! Only took three weeks. He even finished his next one three hours later. But it took a few days for him to finish all eight bottles and of course they upped the amount he had to eat too. I was beginning to think it was a conspiracy to keep him in longer.

Every now and then his monitor would go off, signaling another Brady, and the seven-day countdown would start over. Chris and I really were beginning to think he’d stay in the NICU two months, or more. He had multiple Bradys a day and never seemed to finish all eight bottles. We were angry now…all the time. I was in a horrid mood, 24 hours a day. It’s bad enough the first month of his life was spent in a hospital, but now we have to wait seven straight days without a single Brady? Impossible! We’d ask the nurse every so often when he was coming home.

Finally she said “Look, when we ask you to bring in his car-seat for inspection and give you the form to consent to his circumcision that means he’ll be going home within 48 hours. I have no idea when that’ll be.”

Nice. When would that be? Before he turns 18 I hope! Hell, Hell, Hell…we were in hell. He was alone, isolated, and we were new parents, at home, without a baby. Could things be worse? Of course! Things could have been so much worse. I started pre-term labor at 24 weeks, that would have been worse. I began to bleed, heavy, and no heart beat was found at what we thought was my sixth week. We had to wait a whole week, thinking we were miscarrying, to look again for a heartbeat, which obviously, we found. It took two and a half years to get pregnant. We were told we’d never, ever conceive a child. We’d been through so much. All we wanted was a healthy baby, at home, with us. We are both older than dirt and after that pregnancy and infertility, this is our only child. We just want what so many other people had…to have a baby, carry that baby from the hospital…and go home.

And that’s finally what we did. On April 25, 2010, the nurse told me to bring his car-seat for inspection the next day and asked to authorize his circumcision (That’s for another blog). I couldn’t believe it. I called Mom in shock. I texted Chris at home, who was recovering from surgery. I texted everyone. We got the car-seat, we got him circumcised and then they said on the next day, he could go home.

I ran out and bought balloons and got a cake that said “Welcome Home.” We got a “Welcome Home” banner and got his pack-n-play all ready for him. We got his “take home” outfit all ready too, as it was a tad chilly in late April.

On April 27th, he was one month old, he weighed 5 pounds and 13 ounces, and he was ready to come home. I didn’t get to carry him like I’d always wanted. Instead I had to go get the car while Mom and Chris accompanied the nurse who wheeled him out in a carriage. She then put the car-seat in the car for us and said “Good bye! Good luck.” My son was in my car. Chris was in the back and Mom was in the front and Peter Frampton was playing on the satellite radio. We were parents of a baby that was coming home to live with us. I could hold him as much as I wanted. I’d never have to be separated from him again, at least, until he is an adult.

I was only pregnant for seven months. But I went eight without my baby really being with me. I guess it was kind of like I was pregnant that extra month. He was home with us…and finally, we were a family….thanks to the NICU.

The dreaded head-IV
April 1, 2010
April 1, 2011