Ah the joys of the NICU. I left off with the breastpump, the liquid gold lifeline to Elliott Richard and my complete and utter lack of control. I was devasted. Plain and simple.
I had worked so hard and for so long to ensure that this very thing did not happen and look where he ended up?! In the stupid, flippin' NICU. It was unbelievable and completely inexcusable in my book. I truly didn't know what to do.
Once Elliott was in the NICU it became more and more apparent just how bad things really were. He had a pneumothorax (collapsed lung) on the left side from trying to breathe but not being able to. No sooner did they get his left side diagnosed and his ride side collapsed. He had IV's going every which way. As soon as they had one placed - in his foot or a hand or his head (it took ages for the bald spots to grow back) it would blow and they would have to place another one. He had heart monitors. Feeding tubes because they weren't feeding him orally yet. Then he was on a CPAP. Then a nasal canula. Then when they figured out he had two collapsed lungs and pneumonia; they intubated and sedated him.
For the first 4 or 5 days we couldn't even touch him. I would pump religiously every 2-3 hours; to the point where they had too much milk for him. Then I would walk it down to the NICU no matter what time of day it was. I would hand it to his nurse at the time. Then I would sit.
I would watch him monitors and learn the beeps, which ones were okay. Which ones were cause for concern. Which ones brought everyone running. I would sit. I would listen. I would watch him sleep. I couldn't hold him. I couldn't touch him. I couldn't do a single thing my instincts were screaming at me to do. And there were moments when I thought it would kill me.
They kept me in the hospital as long as possible. They were even able to move me to a larger room and get a second bed so that Rob could stay at the hospital with me. We had a huge black lab, Hermione, at the time and Rob would let her out at night. Sleep at the hospital and go to the NICU in the middle of the night with me. The get up and go home to take care of her first thing in the morning before coming back to be with Elliott Richard and I at the hospital again.
Gavin was staying with my parents. My mom would take him to school in the morning. Rob would pick him up from school in the afternoon and hang out with him until my mom got off work. Then she would meet him for the exchange and he would head right back to my side at the hospital.
Once I was discharged from the hospital they gave me a room for free to stay in while Elliott Richard was still in the NICU. At first, it was in the Post Partum Ward so it was right down the hall from the NICU. Then they moved me to the Peds Unit, which was on another floor and through what felt like a maze of hallways to reach. I hated that room. It hurt to walk to. It took forever. And the Peds Unit is a petri-dish of illness! Why would you put the mother of a preemie there?!?!?!? I was infuriated!
Over time, I felt this horrible weight. This guilt because I would talk to the other mothers. I would watch them celebrate as their babies made it to 3lb or 4lb or 5lb. Here I sat with my 7lb monster baby. In the end though, we really weren't all that different. None of us wanted to be there. We all wanted the same ending; to leave with our happy, healthy babies safely sleeping in our arms.
The days wore on. I know there was a point when Rob and I were cleared to enter the NICU and we walked back to find they performing a medical procedure on Elliott Richard. I was mortified.
At one point the doctors and nurses were explaining to us how serious things were. They couldn't get him breathing on his own. They couldn't seem to wean him off the vent. They didn't know what was wrong, exactly. They were trying everything but were running out of ideas and if they didn't come up with something soon they were going to ask our permission to send him to top notch Children's Hospital 2 hours away.
During this time we were also offered the "support of clergy", which in hindsight I understand. At the time though, it felt to me that they were giving up. It felt like everyone was saying, "Well, you better call a priest and have him baptized because he isn't going to make it out of here." That felt like giving up to me. I refused, rather rudely if I remember correctly. How dare they give up on my baby!
I remember Rob and I asking why they hadn't given him surfactant if it would help him to breathe on his own without the ventilator. They said it was too late, he was too old, it wouldn't help. Finally, after days of on again, off again with the ventilator they decided to give the surfactant a try. He was still intubated but they were working towards weaning him off it.
After the move to the Peds Unit room, Rob "made" me go home. I say "made" because I didn't want to go. I would have slept in a chair next to Elliott Richard's isolet if they would have let me. I was terrified to leave. Terrified they would call and tell us to hurry back and we would be too late. Terrified they would call and say we were already too late. Simply terrified to be here while he was there. I hated it. I hated Rob for a while too. Not a rational response, true. But allow me to remind you that I was 1-10 days post-partum during this time. Rational responses don't usually happen a whole lot during that time anyway.
That's when Elliott took matters into his own hands.
I was visiting him and stroking his hand because he was sedated while he was intubated so this was permitted. His nurse stopped by his isolet and said that she was on her way to grab his next dose of sedation because he was due for it. I just nodded and kept on watching him. Well, he woke up - wide awake - and extubated himself. Even though he was restrained, he just reached up and *pop* it was out and he was breathing on his own. I was dumbfounded and just sort of stood there with my mouth open attracting flies. ;) When the nurse came back I told her what he had done and she mirrored my expression and said, "Oh my." After she spoke with the Neonatologist, he said that they could leave him extubated and see how he did. He was never intubated again after that.
From that point on, things went that way for Elliott. He decided he was done with his IV and *pop*. This was not long after he extubated himself so went with the same idea of "Let's see how he does. Maybe he knows more about how he's doing than we do." Then went the feeding tube.
It was towards the end of his stay. All he really had left to do was gain weight and learn to nurse or take so many oz per feeding. Well since I wanted to nurse exclusively that made it kind of hard to do the whole "take so many oz per feeding". Rob wanted me to give him bottles of pumped milk just so we could get him out of the hospital sooner, which I understand now. But then it just pissed me off. If I was going to nurse exclusively once we got home didn't it make more sense to make sure he was going to get the hang of it now while we are at the hospital and are going to be aware if his weight drops or something?! I didn't want him to stay in the hospital but at the same time I didn't want to give him bottles to get him home to start nurse exclusively and have everything come undone. It was the topic of a great many debates and battles between Rob and I during those last few days. In the end, he was nursing well. He didn't want the bottle once he figured out the nursing. And he was gaining small amounts of weight so they let us go home anyway. :)
All told Elliott Richard spent 10 days in the NICU. Those were some of the longest 10 days of my life.