And then there was the NICU

I wish there were words to put to this experience. It was maybe one of the most horrible things I have ever experienced. You wait 9 months, devote time and energy and blood to growing a human and then you hand them over to people who touch them only with gloves and cords and wires. These people control his eating, sleeping, bathing, clothes, body temperature, oxygen levels, blood sugar and location. You are not allowed in to see your baby from 6am-10am and 6pm-8pm every day. It is a strange universe inside the NICU. Every time I would 30 second scrub, be buzzed in and walk down the short path to Jack's bed I felt the heaviness of the place. Like a sci-fi novel where people are grown in pods with endlessly beeping machines to control the growth environment. The oxygen is connected to humidifiers that bubble and hum and the whole thing seems in direct contrast to a newborn's much thought about, carefully coordinated nursery in their home. And yet, this place is in the business of saving baby's lives. So strange. 

And help save his life I suppose they did at the beginning. His lungs were having trouble and like I said when he was born he stayed blue, floppy and limp much too long. But once in the NICU - you live by the rules of the NICU. For two days Jack stayed on "2 liters" of oxygen air to help add pressure to push the branches of his lungs open to better exchange oxygen in his blood. For the first day and half or so he had tachypnea - high respirations that aren't effective with air exchange and also could make it dangerous to eat. These were real problems he was dealing with. 

Our nurse the first two days was horrible. I get sick to my stomach thinking about how she didn't really allow me to touch or hold my baby. I thought this was just the NICU way at first. She didn't encourage us to stay or be with him and she was short with me and seemed annoyed at both my presence and my suggestions at times. The night nurses seemed so different and friendly and were always asking me if I wanted to hold him.  At the end of the second day I was very frustrated. For many reasons - my hospital stay for my birth was over and I would have to go home the next day. I hadn't see my other kids in days. I kept having to trek back and forth down the looooooooooong hallways to the NICU from post partum. I cried to my postpartum nurse who quickly came to my aid. "That is YOUR baby" she kept assuring me and had me talk to the charge nurse. Next time in the NICU I did - and the NP came too. The NP shed some tears listening to my frustrations and they both assured me I wouldn't have that nurse again. After that we had great day nurses. They helped advocate for me to the NP and helped take great care of Jack. Half of them were named Sarah (literally). If anything the experience in the NICU made me realize how much I love, love, love good nurses. 

Once I went home - a miserable, terrible feeling: to leave your baby at the hospital - I made Matt drive me to the hospital at 2am. I would stay from 2am-6am and then leave when I had to. Go home, sleep, and go back to the hospial at 11am and stay until 5:30 or 6pm. Come home, eat dinner, sleep some and then do it over again. Add to this needing to pump every 2-3 hours and my life was ridiculous. I kept telling Matt that I had too many needs! I needed to sleep, I needed to pump, I needed to eat and I needed to see my other kids while simultaneously needing to be with my newborn for the sake of my own sanity/heart. 

Once his breathing issues resolved and Jesus took off his air (one day we came in and it was off and everyone who had contact with him swore it wasn't them that took it off but his stats were good so they left it off) - it was feeding madness. First of all they had been feeding him according to a formula and so this chubbs was getting 87ml q3h. Every. Three. Hours. almost 3 full ounces of formula/breastmilk. Thats insane! So when they took out the tube and wanted him to eat 1. he wasn't hungry and 2. it was ridiculous to assume he should be able to eat that much just learning to bottle feed. (A bit more difficult with a cleft.) A swarm of people would be in the little area watching me try to feed him. No pressure! It was terrible. Speech therapists were "evaluating" and saying all tons of things. It was absolutely frustrating. We felt stuck and held hostage in the NICU because of their ridiculous formulas about in/output. 

Can you tell I've been cryin my eyes out!?

And so, I pushed back maybe the hardest I have ever pushed back against "authority" in my life. I argued with NPs and MDs and RNs and SLPs... anyone who failed to realize that there was no way he could (or even should!) be eating that much. I demanded that I be able to feed him "on demand" - I told them that if he was asleep, I wouldn't wake up a baby to eat after just a few hours. No wonder he was falling asleep at the bottle when he was asleep to begin with but I had to wake him up because it was his "feeding time." So many frustrating practices that may absolutely hold true for a premie NICU baby but just didn't seem to make sense with my almost 12# newborn. Not to mention that I wanted to be the one to give him every bottle because, especially at the beginning, we have to learn from each other -- his ability/cues and squeezing the milk out. So at this point I opted to use my "room in" days and stay just down the hall for two nights. It was beyond exhausting. At the end of the two days, when I had finally been able to bottle feed him an ounce and a half at each feeding - I desperately begged to go home. I told them I didn't understand what they wanted me to do - because my free "room in" nights were gone and yet every 3 hours I had to be here plus pump plus being a living human being and there was just no way that was going to happen. 

Movie date in my NICU room with the girls because I missed them so much!

Meeting Jack for the first time!

He was in the NICU long enough for the cleft team to come and start his taping there. I-love-my-cleft-team. They advocated for me so much - going to talk to the NP/Dr. and telling them that this isn't my first baby, nor my first cleft baby and basically that I knew what I was doing. The feeding issue was just SUCH a disaster. Even my NICU nurses could see the problems with the "numbers" he was expected to take in - they helped advocate for me too. 

Even though I cried more than I could possibly imagine crying for all the "joy" of having a newborn - I could see God's hand in it too. This was happening with my FOURTH child - not my first. This is my SECOND cleft baby - not my first. In ways, they even told me, that I knew more than them about cleft children because they don't have much experience with that specific thing. And, most of all, I somehow didn't lose my mind. I came close, but there was always a little voice inside me reminding me that this would. not. could. not. possibly. last forever. And, despite the unbelievable stress, Matt and I stayed on the same team and didn't argue or break down together. 

And then, on day 8 of the NICU, we broke out. We got to leave! And I basically ran out without looking back lest they think of some reason for me to stay. My heart was soooo happy to finally be home with all my kiddos in the same spot. I am grateful for this boy who is healthy enough for just a short stay in the NICU. I keep praying for those other mommas I met while I was there and the ones who stay in much, much, much longer. 

The sibs

Thats how it's done!