The Compassionate Prison - Part IV: "NICU & Conclusion"

Continued from last post...


Click here to read from the beginning...


As we arrived in the NICU that evening (Saturday) at 8:00 p.m. there was a new nurse on duty. She was lovely to look at, but cold in her demeanor. When she informed us that they'd be supplementing with formula that night after we left, Daddy said, "No you're not. We are going to pump every two hours and bring the milk over."

She immediately got defensive and said, "Uh... the doctor said... Um... I'll get the doctor to talk with you."
"Yes, that would be a good idea," New Dad said confidently.

Dr. Naomi (that's her name!) came and talked with us for about 45 minutes. There was obvious tension in the room and I just stared at the beautiful baby nursing and/or sleeping at my chest. Dr. Naomi said it was best if Mom gets real sleep and real rest to help milk production. "You need a 4-hour stretch to hit the right point in the sleep cycle to induce the milk production..." she said.

Okay, so now the doctors are talking out of two sides of their mouths. Baby needs to feed every two hours, which they mandated we do since I'm breastfeeding, but I'm supposed to sleep for at least four hours to get enough milk. They're also telling me that I need to feed the baby within 30 minutes -- 15 minutes on each side, but it's "normal" for a newborn to fall asleep at the breast. I'm supposed to do all these tricks to keep her awake, but with elevated bilirubin levels, it's common for babies to be groggy. She told us that the baby's bilirubin (that's jaundice, by the way for those of you who didn't know) levels were "borderline," so they're watching her. I'm producing a "normal" amount of milk for a brand new mother, but it's not enough for the baby. What did all the billions of mothers who were also "normal" do before that precious stuff called "formula" was invented? Seriously people... Why all the conflicting information?!

Oh and we were told that they would lower her IV amounts by 1 increment as she breastfed. The next shift ended up having a different opinion and changed that. She was completely off her IV when we arrived that evening.

In the conversation, I ended up blurting out my complaints loudly and weeping openly. "You're telling me I'm 'normal' and 'I'm not good enough for my baby' in the same sentence!" and "You've demanded of me something that you knew couldn't be accomplished by insisting I breastfeed her every two hours without the facility here to do so, therefore setting me up for failure!"

After 45 minutes of back and forth and trying to squeeze out the full story, Dr. Naomi admitted, "NICU is not an ideal place for a newborn. You cannot have a 'normal' new-mother/baby experience here simply because it's NICU."

Suddenly a piece fell into place. She's in NICU because she aspirated meconium. And because she's in NICU,  other problems (like jaundice) are more likely to occur. And in NICU certain rules, steps, regulations and chart numbers must be met. We cannot have a "normal" mother-baby experience here. We have to play by their rules.

We came to a compromise and they would limit the amount of formula they'd feed her, but I would pump every four hours at the hotel. I left the conversation to waddle to the bathroom weeping. As I stepped out a kind nurse named Pat approached me and said she heard the conversation. She hugged me and tenderly rubbed my back and said, "It gets better, hunny. It gets better..." It was very calming. That same sweet nurse Pat paid extra attention to little Naomi all through the night even though she was not Naomi's nurse and had two other babies. As I left, she was holding her and talking to her, "Would you like to learn how to chart medical records, Baby Girl? Come over here and play with me and I'll show you how. My other babies are boring tonight. They're just sleeping..." I was grateful someone was treating her somewhat normally.

Wonderful sister friend T had delivered more clothing and my breastpump to New Dad at some point during the day, and I finally arrived at the hotel at around 1:30 or 2:00 a.m. The beautiful room was like a piece of heaven. Although I only got 4 hours of sleep, it felt wonderful. I pumped the next morning and got 8x more than I had ever pumped. We had to get a photo of the milk on ice for posterity... Ha!

DAY 4: NICU (Sunday)
It was raining that morning, and though gloomy, it felt like a soothing balm to my soul. New Daddy and I sat down to breakfast together in the beautiful dining room and watched the rain dance among the exotic landscaping in the courtyard on the other side of the floor-to-ceiling windows. It was, again, one of those moments of relief among the intense stress, emotion and challenges of this ordeal.

We arrived to find Little One under the bilirubin light in her isolette. "It was just precautionary," we were told, since her jaundice levels were "borderline." Still, one more thing...

Annoying NICU Nurse Nina was there when I came in that morning. Great. Just what I need. Oh well. I'll try to have a good attitude.

The first thing I said to Nina when I walked in was, "Okay, so how am I going to feed her this morning?" (In as cheerful of a tone I could muster.)
Nina: "Okay you feed now."
Me: "Right... Am I going to pump and feed her, or breastfeed her or did you already feed her formula?"
Nina: "You feed."
Me: "Yes, that's what I'm asking. Pumping and feeding or breastfeed now?"
Nina: "Yes. You feed. Okay. heh-heh-heh-heh..."

What?! Can this communication barrier get any worse?

Just then Nasty NICU doctor from two nights before (the one who didn't even read her chart to know when she was born) walked in and again put on some serious pressure for formula. She solved the "feeding" question -- I should breastfeed -- when I asked her, and Nina protested, "I thought..." Nasty doc said, "Yeah, I changed my mind."

As I fed Little One, Nina showed me a chart with numbers for my baby's weight, age, etc. and what she was getting to eat and what she "should" be eating. According to her numbers, we weren't even close. Apparently, she "needed" several ounces of milk, and we were still counting in CC's/mL. (There are 30 CC's/mL in an ounce.) Both of them said, "Your baby needs formula. You are not producing enough milk." That did not seem right. But I was fighting a losing battle.

We wanted to leave this place, but the baby had to show them certain numbers on their charts before they can comfortably release her. It was becoming apparent that we needed to jump through their hoops, meet their stupid requirements, etc. before we could be released from this medical prison.

"Fine!" I finally said. "Feed her whatever the hell you want. However much you want. Meet your stupid chart numbers and get us the hell out of here!"

At that moment, Annoying Nina got this HUGE smile on her face and patted me on the shoulder patronizingly and said, "OH Guuuuud! Good fo you baby! Get her feeding and get bilirubin down! I so happy for you! Happy for baby! Heh-heh-heh-heh-heh!" She kept giggling as she rushed off to get the formula.

I wanted to kick her in the crotch.

When she was gone I said to Nasty doctor, "I don't think it's right. I don't think it's necessary, but it's apparent to me that we have to play your game to get out of here."

She didn't respond. I didn't look at her when she quietly left the room. It felt good.

When the husband and I went to lunch, I explained to him what happened (he was running some errands for me) and he was resigned as well. I was so glad, again, we were on the same page and equally mad. Okay, let's do what we need to and take her home tomorrow. Okay.

Daddy feeding Little One for the first time.
If you know my husband, you'll find this 5 o'clock shadow uncharacteristic of him. However, when we went to the hospital, he was cleanly shaven and didn't expect to be there longer than the 2-3 days as normally planned with a vaginal birth so he didn't bring any shaving stuff with him. And then he ended up not caring. A lot of things changed in this treacherous week...

I also talked with the husband about how much Annoying Nurse Nina was driving me crazy. I couldn't stand her in the same room. Her giggle, her hovering, her lack of communication abilities... That with the fourth day of battling those stupid cords to the heart/respiratory monitor and the incessant BEEP-BEEP-BEEP anytime she moved or kicked her legs or anything, I was going to lose it. After lunch he went in and asked if we could have another nurse. It was extremely difficult to do so, but Nina had agreed to only come in when absolutely necessary. (See... I told you the baby was fine! If the nurses are all okay with Mom and baby alone for several hours, why can't I just take her home?! For heaven's sake...)

Our amazing friends (sister/friend T with her husband and two kids) brought dinner to us that night in our hotel room. We told them the stories and they were just as mad as we were. It felt so nice to have them there. Complete comfort and support. 

DAY 5: NICU (Monday)

We got another decent night's sleep that night (meanwhile Baby's getting formula all night long). We checked out of the hotel and got things ready to take little Naomi home. When I arrived, she was still under the bilirubin light and there were no signs of anyone preparing anything. My heart sunk. 

Dad arrived a few minutes later and we requested to speak with the doctor on duty. It was a Japanese guy, and he took his sweet time getting to us. It was about an hour and a half before he came to talk to us. Again, I couldn't look at him when he warily told us "her numbers are still too high..."

"Too high?" asked Daddy. "We were told they were only borderline."

"No, they're higher." 

"What does that mean?"

"We can't release her until the bilirubin levels go down?"

"What does that mean? What are the numbers? What's normal? What's the goal number?" Daddy asked assertively. It was like pulling teeth to get some real information here! 

"She's at a 16 and we'd like to see her around 13 before we can comfortably release her."

"16? How long has she been at 16? We were told she was only around a 13-14, which was 'borderline.'"

"She's been at 16 since yesterday," Japanese doctor said. 

I began to cry. I cannot take my baby home today. I cannot take her home. I have to go home without her. No one could hold back the tidal wave of tears assaulting my face. We're still bound to this stupid chair and isolette and stupid cords in this stupid room for who knows how much longer! I can't bear it.

After I finished feeding her, I left the room to go to the bathroom and curled up in a ball and wept... hard. I couldn't stop the sobs to save my life. Shaking. Trembling. Sobbing. I had hit rock bottom. We were completely bound and powerless. Despite the stupid formula, she got full blown jaundice and I had to deal with this stupid NICU family room bathroom, scrubbing my hands for three stupid minutes every time I wanted to see my baby, and listening to those stupid BEEP-BEEP-BEEPs when the heart/respiratory monitors would freak out for no reason. I. couldn't. bear. another. minute.

I don't know how long I was there, but the husband asked where I went and why I was gone for so long. I tried to stop crying but I just couldn't. Stupid hormones. Stupid NICU. And the thought of going home without Naomi was unbearable.

We went to lunch in silence. There was nothing to say. I couldn't bear to talk to anyone, although my family needed to know. I felt bad I didn't have the strength to talk to anyone, but I could only focus on breathing and eating and feeding Naomi at that point. Daddy was just as devastated as I was, and just as mad. Why didn't they just tell us? I sat on an inflated donut at Panda Express eating orange chicken and fried rice with tears still flowing down my face. I did not care one bit what anyone thought. I know I looked terrible. I felt worse.

We had some more time to kill before returning and the husband asked what I wanted to do. "I just want to sit and have you hold me." He pulled over the car without another question and hugged me in silence for another half hour. I tell you, I'm married to Superman.

He dropped me off and did laundry, a few errands, and found another hotel to check into that night while I fed Little One and tried to take a nap in the chair in the NICU Room 354 next to her isolette. Daddy knew I would probably sink even lower and not do well at all if I had to go home without her... seeing an empty carseat... an empty crib... torture. So Superman just found another comfortable place to stay that night. The pillows and sheets and beds were awesome in both places. 

That evening our friends brought us dinner in our hotel room again! and I actually laughed a little that evening. Well, sorta laughed because it felt like a giant hand punching me in the crotch from the inside with every chuckle. I tried holding my breath when someone said or did something funny. I even tried doing this high-pitched fake laugh to take off some of the pressure. I just got mocked... :) (in a good way)

We had that nice nurse Pat assigned to care for Naomi that night. I was frazzled still, and I could tell that Pat was on edge too. She had obviously been told we were the "problem parents" and to walk on eggshells around us. She didn't act the same way she did the night before, but it was still better than Annoying Nina or that cold, attractive nurse from the night before. 

So that's it. We had become the problem parents who apparently think they know everything even though they've only been parents for a few days. Well, I will tell you what: those parental instincts that immediately appeared when she arrived are very real. No we had not taken care of hundreds or thousands of babies like these nurses and doctors, but we know what's right for our baby. We know she is just fine, and we know she would be better if she were home in our care.

I had calmed enough to resign myself to going home the next day without her. I understood the numbers, I understood where she was at and what needed to happen. I was going to be okay. We couldn't afford another night so we would have to bear whatever was going to happen.

DAY 6: NICU

We had planned on waking early again, showering, eating breakfast, etc., all before we needed to be at the NICU for the 8:00 a.m. feeding. But I suddenly awoke at 7:40 a.m.! All I had time to do was go to the bathroom and drive there. (It was still taking me 15 minutes to go to the bathroom with the whole annoying routine.) 

When we arrived I could tell things were different. Dr. Naomi was the doc for the day, and I saw her several times in and out of Naomi's room. I caught a glimpse of Naomi's medical chart and notes Nurse Pat made on it the night before. It said, "Extremely irritable all night. Milk found in nose after suctioning... Possible reflux?" 

"Oh great," I thought. "They've found something else to keep her here. I'm so ready to talk to an attorney..." 

But it was obvious to me -- gut feeling / parental instinct -- that they were simply overfeeding her! They gave her several ounces that night, which is a lot for such a new baby! Her tummy is still so little; she truly doesn't need much. 

Several case workers came in to talk to me, and even the head charge nurse came in to discuss my emotional state. I explained that had everyone just communicated with us better, disclosed all of Naomi's numbers, etc. and allowed us to make choices (which was clearly appropriate in this situation!) instead of mandating everything on us, EVERYTHING would have been different. If I had known that she had full blown jaundice on Sunday night, I would have been mentally prepared that we most likely wouldn't be able to take her home. I mean, how difficult is it to take 5 minutes and say, "Here's her numbers, here's the goal, here's option 1, 2 or 3 and here are the ramifications of each choice. What direction would you like to go?"

The goal bilirubin level was 13. Naomi showed her over-achiever-ness and came up with an 11 that morning. If they didn't find something else wrong with her. We got some counseling on breastfeeding, addition care techniques for baby, and counseling on reflux... They seriously thought she has reflux, although it was difficult to tell and the respiratory/heart monitor records were inconclusive.

Dr. Naomi had to give me one more jab that morning when I was feeding Naomi. They weighed her before and after feeding one last time and when it was apparent that she was actually getting something, Dr. Naomi said, "See! We told you your milk would come in! You were just a day or two late, that's all."

I kept my mouth shut. But I wanted to kick her in the crotch. (You seeing a pattern here?)

We were also informed that the hospital photographer was there and ready to take photos. Remember how we woke up late? Neither of us had showered, and when she arrived, it was time for Naomi to feed so she was a little irritable. She would not let go of her binki. Oh well. We got a few nice photos there in the NICU room. 

Before lunch they weighed her one last time. 7 lbs., 13 oz. Normally, babies don't return to their birth weight for a week after they're born, but she was fed "so well," she decided to gain weight in the hospital. (She was 7 lb., 9 oz.) They gave her the Hep B vaccination while we went to lunch. (Our last meal without a child was Subway and Pink Berry.) We signed the release papers late that afternoon, got her dressed and got wheeled out of there. Good riddance. I hope I NEVER have to see the inside of that NICU, or any other NICU for that matter, ever ever again.  It was anti-climactic, but who cares. We were going home!!!

Here's little one swaddled for the first time. Didn't Daddy do an amazing job?!

When we were in the car and all buckled up, we held hands and wept together with profound gratitude for several minutes. One whole week after I went into labor and arrived at the hospital, we were finally leaving this "prison of care and compassion." New Daddy offered a prayer, and we were on our way home. 

But we made one little stop on our way home...

Sorry Naomi. Your parents have a serious sweet tooth.

So that's it. That's the traumatic story. I know hundreds of parents have experienced what we experienced with a long, long labor and a long, frustrating and at times devastating ordeal, but it was new to us. And it was, hands down, the most difficult week of our lives.

Having her home has been nothing but heaven. She's a fantastic baby and brings us so much joy. Many people have asked, "How are you holding up with the lack of sleep and stuff?"

Honestly, I would take a thousand sleepless nights with a newborn at home than another week in NICU. Good riddance.