Before I get into our NICU experience, which I promise is coming, I wanted to explain a few things to people about what we have been through and why we have made the decisions we have. I apologize for this rant being so angry, but honestly I am beyond angry, hurt and confused.
We spent 4 years on and off trying for a baby. We were literally just coming to terms with the fact that it may not happen, may not be in the cards for us, when voila, we found out we were pregnant. Like I was already planning our honeymoon (it has been 5 years) in my head, how life would look without kids, how different things would be. So it really came as a shock to both my husband and I when we got the news. The head shift went from making all kinds of plans without children to “yikes, we are going to be parents now”!
The pregnancy wasn’t bad at all. I expected and had heard much much worse. Dare I say, I even enjoyed it? Sorry ladies who have had it bad. I really do feel for you. Things were going as expected…a little pressure on my nether regions kinda early, but everything checked out ok. Then one morning, 11 weeks early, at 29 weeks, January 25th, my water broke and our little man emerged into this world really damn early!
Did I mention I am a control freak? That I had about 100 things I still had planned to get done before his due date, April 8th? That our house was an absolute mess? That none of the baby things were ready to go yet?
So Nathan was sent to the NICU where he stayed for a month and a half. As amazing as everyone was at the hospital, it was a pretty hellish experience for me personally. I was pumping every 3 hours around the clock with lots of pressure from the doctors to get that breast milk flowing for my baby who desperately needed it. Nurses checking in with me every shift to see how my milk was coming in. My breasts were raw and hurt like hell. I was recovering from having a baby, absolutely exhausted, and dealing with the beginnings of post partum depression. Well, just like with Nathan coming early, my body still was not cooperating. I only pumped 15-20 ML at most per pump session. It took 8 pumping sessions to equal just ONE feeding. I told myself I had to do it. I had to do anything to help my fragile little guy. Luckily, the hospital had donor breast milk to give Nathan at some point since I clearly wasn’t producing enough. I was never so frustrated with my body.
From day 1, the doctors told us no children under 12 were allowed to visit and no one sick was allowed to visit. Hospital policy. They will even kick parents out if they are sick enough. I wore a mask for 2.5 weeks because I felt like I was getting sick. It ended up being stress related. Turns out my body was shutting down on me. So our plans of bringing the baby home, showing him off to all our family and friends over the coming weeks and enjoying our time as new parents came to a screeching halt. Now we had to be vigilant, so careful of everything. Being told to wash our hands constantly and the nurses washing theirs like crazy too. We trusted the doctors and their instructions because, why wouldn’t we? We don’t know better than doctors. Certainly not neonatologists. We also wanted to be there when anyone would visit. I don’t expect anyone to understand this but we had to take every precaution possible. Little things, like washing your hands after you touch your phone, or touch your face, turning off your camera flash, being careful of the wires, being cognizant of overstimulation, things people would forget or not think of because they don’t know about things like overstimulation of a preemie. The list goes on and on. Unfortunately we could not be there 24/7. We wish we could have, but we had other responsibilities and, as I said, a ton of things had to get done for when the baby was actually released from the hospital. So I typically spent 3-6 hours a day there, and my husband would come after 11 pm, sometimes midnight to stay with our little boy as long as he could.
As a result of the hospital rules and doctor’s instructions, we had to make a lot of tough decisions on who could and could not visit. That meant a lot of the children in our lives could not visit and it broke our hearts. We even had to limit what friends and family could visit. Believe me, only close family was allowed. Due to all this, there was a lot of resentment, hurt feelings and anger directed our way. That only made things for us 1000 times worse. We were already worried sick about our son constantly because you feel so out of control. You can only sit on the sidelines and watch and wait. The ONLY thing we had control over was who would visit and when and keeping him safe and healthy during the process. Overkill? I’m sure. But until you are in our shoes, and you watch this little baby who you tried so hard for, struggling with every feeding, breathing heavily and so on, you should try to understand how hard these decisions were for us, and that right or wrong, we felt we needed to make them at that time.
Making things worse was the fact that everyone assumed, rightfully so, that once we brought Nathan home, anyone and everyone could visit. Again, I point blank asked the doctors and multiple nurses, more than once: “When can we have children over? When can we do family gatherings? Can we use a mask or anything so they can just meet him? Is there anything we can do?” Over and over again, they told us no exposure to children until summer. Yes, summer! I was like, seriously? It’s only March. I know RSV was one of the most dangerous things to catch, and I guess was prevalent at the time. They also said we had to basically stay indoors. No grocery store, Target runs, no malls, no parks, no parties, nada. Only a couple people over to our house at a time and only if they are not showing any signs of illness. I could take him on walks in the stroller which was my saving grace. I was told not to worry so much (basically saying to ignore the doctors) and I bit my tongue but wanted to say “Oh, can you find that switch on me? Can you turn it off for me? Great, thanks.” It was a big blow to us, and a huge disappointment. I cried many tears over the situation and the fact that all I wanted to do was show off our little bundle to the world and I still was not allowed to. But again, who the hell are we to not follow doctors orders? So once again, many people got upset with us. And once again, our feelings were even more hurt and for us it was like “we KNOW this sucks, we KNOW this is hurting you. We are not enjoying this believe it or not. In fact, we hate it.”
Once he came home, it was a rough adjustment. I mean really rough for both of us. Still pumping like crazy and getting no sleep (at least I got a little sleep before), still worried about Nathan’s feedings and breathing and of course germs, with a ton of doctor appointment follow-ups in the first 2 weeks, it was a recipe for disaster. After about a week or so being home, and I just broke. A switch literally flipped and my depression spiraled. I was crying non-stop, for hours. I could not breathe I was crying so hard. I blamed myself for everything that happened. I hated what was happening. I hated that people were so angry with us-like we were purposely punishing them. There were so many unknowns racing through my head. “What if this never gets better? I’m not equipped to handle this. I’m not cut out to be a mother. I knew I couldn’t handle a baby. How are we going to pay for all this? What if he has problems down the road? What if we are seeing doctors on a regular basis for the next year? His whole life? Will he ever be able to play like other kids? Will we ever get out of the damn house again?” I mean, it was all repeating over and over in my head.
I think I broke down when I did because I was holding it together (at least on the outside) while he was still in the hospital. After coming home I could let that wall down, be vulnerable, feel everything over the past month and a half, come to terms with our new normal. Also when he was in the hospital, the first thing listed on his chart was that I had a history of depression. The very FIRST thing. Above his medical issues, his medications, his history, everything. So every nurse, doctor, consultant saw that first and foremost. I was honestly worried that if I showed too many signs of depression they would hospitalize me, or even worse, the state may get involved and I may be an unfit mother. I mean, I didn’t know what could happen. So I held it together.
I got involved with an intensive therapy program because my regular therapist, although wonderful, was not enough at the time. It ended up being a great decision for so many reasons. I realized there were so many other women, “normal” women, who were going through the same thing. Some much worse, some less so. But they were all kind, honest, amazing women just going through mental hell. But at least we were going through it together. Bravo to anyone who can just “get over it” but for many, this does not work. It’s not how depression works. True depression. True anxiety. It sometimes takes a village of help.
I’m much better than I was and came away with hopefully new gal pals. Unfortunately it is still too soon for playdates. Ugh. Again. Ugh. I will always have to work at my depression and anxiety, and staying positive as a new mom, and reminding myself I’m doing the best I can. But I’m getting there.
I know in time, things will calm down and get better. I swear I don’t know where the days go. It’s making bottles, washing bottles, feeding bottles, diapers, laundry, food, little sleep. Repeat. Repeat. My husband and I are lucky if we get any time to chat, or god forbid cuddle for a few minutes. I would like to thank all those around us who were understanding of our situation, supportive, offered to help and have been so patient with meeting our little man. You have no idea just how much it meant to us. He is lucky to have you in his life, as are we.