Going Home: Take 1

A lot of things happened in Ruby's first two months in the NICU. She developed a dairy/soy allergy thanks to the docs fortifying my breast milk. She had a G tube placed when it became clear she had "failure to thrive." And when her reflux became worse than ever...to the point that we couldn't transfer Ruby from our arms to her bed, she had an NJ placed. This was done after a lot of confusion, miscommunication, and debate between our family, the NICU staff, the GI staff, and IR. Click here to find out what an NJ tube is.

A slightly less than 2 month old Ruby, looking adorable in spite of that God-awful NJ

After her NJ was placed, we were nearly at our wits end with Children's. For every week that Ruby was in the NICU we had been told that she would be coming home the next week. It was 8 weeks later, and we were still there. It wasn't all the hospital's fault. I mean there were and are many problems with CHOW, but they aren't all to blame. Some of our frustration came from just not being home. Not having any sense of normalcy. Being forced into a separation of our closest friends and family. Ruby was allowed only 4 designated visitors besides ourselves, so with the exception of Ruby's first few hours on Earth, she had never met any of her family besides Dan, myself, and our parents. It really was just an awful environment to become a parent in. We didn't even have a window. Ruby had never seen daylight...not even once. And she had only been outside for 30 seconds or so on the day she was born. In too many ways to detail on here, life in the NICU was horrible.

We gradually developed a reputation among the nurses. More and more nurses shied away from us. We became known as "that family." We were the parents that were known to complain about, argue with, not listen to, insist, demand, and generally question everything they said...only when they were wrong of course ;) You might think I'm exaggerating but months later when we were in the CICU we had a NICU nurse that floated between ICUs from time to time. She told me, without any prompting, "Well, I don't know what everyone was talking about. You seem very nice to me!" Ha!

Ruby when she came home getting a "practice feed" from her Auntie

It wasn't that we thought all of the doctors and nurses were inept. But some really did NOT do their jobs. They would play on FB or solitaire, while an infant they were responsible for would lay crying in bed. It made us scared to leave Ruby's side. Now, I might have said this before, but we noticed that the only time that many of the nurses gave affection or stimulation to the babies was when they were being fed. But since Ruby was not fed, we feared that when we were gone, she was left alone. She was also quite a bit older than most of the NICU babies, and therefore needed to be played with and entertained that much more. Thankfully Dan's father worked 2nd shift, so his parents would come every night and take over until early morning. They were harassed many times for this, even thought CHOW proclaims to allow parents and grandparents to be with the children 24 hrs a day. One of the reasons they were bothered was because they "held Ruby too much." This was a problem that many nurses seemed to have. They did not like it when Ruby would sleep in our arms. They insisted that she would never fall sleep in a bed and fed us all sorts of baloney about how we needed to put her down to sleep. We, of course, ignored all of their remarks and held Ruby every second that we could...in fact we still do :)

There were many other problems that we had during those first 2 months, and I'm sure many are common to other families who are forced to endure prolonged hospital stays. But we truly did become a thorn in the NICU's side. During this time Ruby was getting worse and worse. Her reflux had subsided due to the NJ, but her O2 saturation had continued to fall. She required more and more oxygen to maintain her sats, which were in the 70s range. She frequently had spells when her sats would dip into the 50s and even 40s. And her NJ was only a temporary tube. She was supposed to have a GJ placed after her G tube site had healed. And yet, out of the blue...we were told that we could go home.

Dan bringing just a small portion of my milk home

I had been given the choice that we could either bring Ruby home on September 11th and keep her off of breast milk, or she could stay another week or so and we would try to start feeding her with the milk that I had been so faithfully pumping. Because of her dairy/soy allergy she had to be taken off of my milk. And even though I had been strictly abstaining from such products--mighty hard for a vegetarian who doesn't like vegetables I might add--they refused to put her back on my milk. I had pumped so much milk that I had taken up 1 and 1/2 freezers in the NICU! So I was asked to make the aforementioned decision...and although I desperately wanted Ruby back on my milk, I decided I'd much rather have her home, where I could experiment with giving her my milk anyway!

Dan and I wanted Ruby home so badly that I think we were blinded by what having her home, in that medically fragile state, really meant. Honestly I think it was irresponsible for the doctors to send her home in that condition, but at the time we just wanted OUT! And so after a few days preparation we walked Ruby out of the hospital nearly 2 months after she had first entered it. She used her car seat for the first time, saw the sunlight, felt fresh air on her skin, listened to records, and met our pets. We were even able to take her on one brief walk in her stroller. Some of my friends were able to meet her for the first time. Her Auntie and Uncle were able to hold her for the first time since birth. And I got the spend the first night ever with my baby since she had left my body :) There were many firsts in that short time!

Going for a walk!

While those aspects of having Ruby home were wonderful, there was also the reality of what life was like for those crazy 2 days. We had to sleep in the living room where all of Ruby's medical equipment was stationed. Dan and I slept on the floor while Ruby slept in her baby swing--the only piece of furniture that had the sharp angle she needed to decrease reflux as she slept. I was busy nearly every second she was home. I had to get up around 5 or something to do morning meds and prep for the day. She had so many tubes and paraphernalia that needed constant cleaning and care. And I must admit, I was still under the impression that these things had to be done in the EXACT way I was told at CHOW...I am now WAY more laid back about how I clean things and how I handle Ruby's medical care. But back then I didn't know any better.

How we slept

It was during our preparation for Ruby's first cardio check-up that she had a major blue spell. We were trying to change the tape around her NJ and she flipped. She de-satted into the 40s, possibly 30s, and we were on the phone with the hospital. They said to bring her in, and that she would probably be readmitted. When we arrived and she was examined, her sats were still dangerously low and so her card told us with excitement that he'd "pull some strings" to get her back into the NICU. Why we didn't speak up then and insist on going to the CICU instead I'll never know! If we had only spoken up I would've been able to stay with her at night, eat with her in the room, and have a window! But we didn't say anything, I guess we just assumed that her doc knew best, and he felt it would be better for her to be among the staff that knew her best. Reflecting on this now, I see that this doesn't make sense. The doctors change in the NICU every few weeks so we had doctors that had never seen Ruby before anyway!

But we did keep quiet. And we were back. Walking back into that unit, I felt like throwing up. I hated that everyone knew me. I hated that I knew where everything was and how the whole placed worked. Most of all I hated how normal it felt to be there.