Heather tells me about the delivery, how it was a true shoulder dystocia, how she hadn’t seen one in weeks and weeks and weeks and how I did wonderfully. I can’t believe this happened. He had a bruise on his right shoulder and his face was a little purple in places but otherwise he appears to be a perfect, almost-nine-pounds baby. I have definitely seen worse birth injuries in a baby, I decide. He’s fine.
(Later, in the pictures, which I can’t show you because he’s a naked baby and I don’t do naked baby pictures on the internet, it will be VERY noticeable how several minutes after birth his head is still purple and he’s still recovering from the loss of oxygen and blood flow.) I find that I’m still a bit surprised at how big he is! At alllllmost nine pounds he’s my biggest baby.
My parents come visit and bring the girls. I ask the nurses to keep us in the delivery room a few minutes longer so they can come by, see him and us, and then get them back home. It’s late, we’ve been gone all day, and I know they’re anxious to see him and me. In a few hours, I will be so glad everyone got to see him right now.
At 11:11 that evening, I post this photo to Instagram. We’re in the recovery room, it’s quiet and dark, and it feels like we’re finally coming down from the highs and lows of the day, like the hardest parts are over, like we can start to RELAX and enjoy this baby. I prepare to actually get an hour or three of sleep.
But then at the midnight baby check, he’s breathing too fast. I remember watching the nurse take his pulse and it was taking too long. She did it a few times over, counting and watching him breathe and…it was just taking too long. She says that he’s breathing a bit fast and she’s going to take him to the nursery for a closer look. And then, in what I will always feel is a huge failing on my part, I let her take the baby to the nursery without either one of us.
My personal hospital rule is “Don’t Let Them Take The Baby Any Place Without You.” But in the moment I felt very certain there was nothing wrong with him (his respirations were only three or four above whatever number they wanted it to be) and I was tired and my epidural still hadn’t worn off all the way and I figured, what’s the harm in going down the hall to listen to him breathe a few more times? They’ll see he’s fine and bring him right back.
Except…that didn’t happen. A little while later the nurse comes back with no baby and says they’re going to take him down to the NICU to have the nurses down there look at him. Because his breathing, you see, it’s just a little too fast. I tell him that he’s due for his feed right now and he’ll be hungry and no, he’s not going to the NICU for a look, please bring him back here for his feed. Flustered, she says they’ve already taken him downstairs and I tell her, “Well, tell them to BRING. HIM. BACK.”
The next time I see Preston he looks like this, and he’s in the NICU and they won’t let me nurse him and they’ve already given him two chest x-rays (without my specific permission, which ENRAGED me. I know I signed consent forms but COME ON REALLY YOU COULD NOT CALL ME OR WAIT FOUR MINUTES UNTIL I GOT THERE?). I chew out someone something serious over this and I cannot EVEN BELIEVE he is here in the first place because HE IS FINE OMG SHUT UP EVERYONE.
Because they took him downstairs without my specific permission and they started doing things to him without my specific permission, I felt somewhat violated. I felt like they’d taken something away from me, that they’d broken the rules (when they hadn’t, not really in an official way) and I was SO ANGRY. I had also given birth in a very dramatic fashion six hours prior and I WAS NOT IN THE MOOD FOR THIS BULLSHIT. GIVE ME MY BABY AND SHUT THE HELL UP PEOPLE.
They won’t let me hold him and they won’t let me nurse him, which goes against just about everything I know about babies. A nurse tells me that babies actually DO NOT like to be held and I resist the urge to strangle her. (Though many weeks later I do stumble upon the bit of information that premature babies actually do not like to be held, it sort of overstimulates them. However, this isn’t what she said. She said BABIES DO NOT LIKE TO BE HELD.) The same nurse starts saying something about “I know this isn’t how you imagined this turning out…” and I just wanted to hit her because WHAT? Nothing is turning out in ANY WAY he’s just here on a warming table while you all watch him breathe a little too fast.
I sit in a wheelchair next to the warming table and watch him for a while. The chest x-ray reveals some gunk in his lungs, which maybe isn’t unusual given the quick and dramatic delivery. Perhaps he was not in the birth canal long enough for the fluid to be expelled as it normally is. They draw blood and send it out for tests and a culture. At some point my brain and my body start to fold. Chris and I agree that he will stay with Preston and I will go get some sleep. If they won’t let me nurse him, and I’m just sitting here watching him, I should probably sleep a bit and Chris will stay with him.
When I wake up at 545 on the next morning (about three hours after I left the NICU) he has been admitted to the NICU and he has a GI tube because they wouldn’t let me nurse him so obviously his blood sugar dropped and required the GI tube. This also enraged me. But, they were insistent that if I nursed him he might choke. (As it turns out, overnight he did cough up some gunk.) He’s also on IV antibiotics for a suspected mystery infection. He breathing ranged from 64 to 90 breaths per minutes in the early hours of the morning, but has since stabilized.
And, it sucks. The whole thing sucks. I cried so much.
At 9 am they let me hold him. And that part was so wonderful I’m tearing up now almost seven months later. The way he looked at me it was just like, “I am so sorry baby Preston. I am SO SORRY this is happening to you.”
The next few hours are a blur. He was hooked up to wires and then he wasn’t, but most of all I remember being in an information void. Nobody told us to be present when the doctor did rounds and nobody called us to say what time it might be, so we didn’t get an in-person update. We didn’t KNOW we were supposed to be there for that. So we got the information out of the nurses and of course it wasn’t as satisfying as hearing it all at once from the person making the decisions. That was the other part that grated: we seemed to have been left out of ALL THE DECISIONS. And we didn’t KNOW these people! This wasn’t our pediatrician, we didn’t have any NICU experience, I had no idea what to expect or what questions to ask or when to be places to hear the right things. It was so hard to know or feel like I was doing the right things.
They ran the bloodwork first thing, because rapid breathing can be a sign of infection and one of the tests, a CRP, measures a protein that is released when part of the body is inflamed. It detects internal inflammation. So, it does not detect an infection SPECIFICALLY, but inflammation can be an indicator of infection and this is how you go round and round on the medical wheel of fortune. They started the antibiotics as a precaution before the CRP result even came back.
Nobody ever said the number at first, they just say it’s…HIGH. Then I hear that “it’s 4.2, so…HIGH. HIIIIIIGH.” I get the feeling that’s…a terrible number. Everyone says it’s hiiiiigh, but it kind of feels like a low number until I find out it’s suppose to be .2. POINT-TWO. I am suddenly less annoyed that he’s in the NICU for no reason and more concerned there might be something actually WRONG with my child. I nurse him in the NICU and Google the CRP, which I decide is a really easy acronym to remember because it almost spells CRAP and I decide it’s a crappy test and a crappy situation and THIS WHOLE THING IS CRAPTASTIC.Google doesn’t really comfort me because it leads to things like reports on infant sepsis and heart defects and kidney and liver failure and those are all things that sound a lot worse than an infection that IV antibiotics can fix, so I kind of close my brain and stop Googling. We’re waiting on the 48-hour blood culture for more results anyway.
I decide to stop worrying about when we are going home, to stop worrying about tomorrow, to stop thinking past anything but the next feed. I live in 3-hour increments and even just limiting myself to that stretch of time seems to strain and stress me a great deal. I decide to ditch the wheelchair that afternoon and walk to the NICU for once because having to call for someone to wheel me down to the NICU to feed my son is just too demoralizing. I can walk now. Slowly.
With a CRP of 4.2, we guess there is something his body was fighting and the antibiotics couldn’t HURT and it if was an infection we definitely wanted to treat it. The rest of his bloodwork was totally clear, but we’re also still waiting on the 48 hour culture. So, he is not OBVIOUSLY sick, but MAYBE he is.
But I just kept thinking….his delivery was so traumatic and stressful, that could have been the reason alone the CRP was high. Shoulder dystocia? Inflammation internally? Yeah, I can see that happening! (Reminder: I am not a doctor. Am speculative, angry mother with Google.) Or, I could see it being an infection, because I WAS checked several times during labor and perhaps something was introduced to the birth canal or something was already there or WHATEVER. I could buy that for some reason he had an infection, but I very much suspected it was the traumatic delivery and I was very much annoyed that nobody was talking about it.
By 2:30 the GI tube is gone (I think it was out by 1p, actually) but his poor little face is all torn up from the tape. He’s also off oxygen, which is great! I ask the nurse if we can remove the little round pads that were keeping his cannula in and she says that she’s a bit superstitious and likes to leave them on for a bit just to MAKE SURE we don’t need them again. I remember quickly agreeing. Don’t want to be TOO EAGER, do we?
He’s not on a warming bed any more, he’s in the standard plastic baby box on a cart. This should feel more normal, but I’ve already had two babies and THIS IS NOT NORMAL NO IT IS NOT.
In fact, the whole thing was so unreal. He was a big, red-cheeked, nursing-happily, gorgeous baby. He did not look sick. WHY WERE THEY KEEPING HIM HERE? Once you get admitted to the NICU, which can happen in a flash, getting OUT is a much more tricky ordeal. The next step was to repeat the CRP in two days and continue IV antibiotics. In the meantime, I can spend as much time in the NICU as I want, nurse him as often as I want, and rest in my room upstairs between feeds. This is the other thing that I learned about the NICU: There is not a lot of room for negotiation. You take what you’re given.
So, I spend time with my baby. I also take pictures of his spiky hair, which I am totally in love with.
Now that I’ve been in the NICU for several hours, I have taken the time to look around and see that there are babies in here that are much, much sicker than Preston is. Much, much TINIER than Preston is. Babies with alarms that go off every fifteen minutes, it seems. Babies with parents who come in together after work to visit. There is one baby that doesn’t have anyone visit and she seems especially sick, and I overhear the nurses talking about how the mother said she’d be here today but she hardly ever comes you know, and the social worker says something-something-something about the baby. I look at the terribly small baby in the incubator next to us, with a mother much younger than I am, and I catch her staring at Preston and giving me the side-eye. I wonder what she’s thinking about us.
I look at my gorgeous, full-term, almost-nine-pounds baby and I suddenly feel so guilty and awkward having the biggest baby in the NICU, just hanging out in his plastic baby box on wheels.
Later that day a nurse asks me my birthdate while dispensing my medication and she remarks how it’s almost my birthday! And I think, “Yeah, what a GREAT birthday this is going to be with my son in the NICU.” This is a really low point for me. I don’t want to hear anything positive that anyone says, about anything. Oh, it’s a nice day? Who cares? My son is in the NICU!
My world revolves around those visits to feed him. It feels like someone stole my third baby party. Like, someone stole my first few days with my last baby, and RUINED THEM. It feels so unfair. “Why is this happening to us?” I sob to myself when nobody is around to see. They set up rolling screens around us when I nurse him, which I initially said I didn’t need (seriously, do not care), but after a time or two, I like them for the feeling of privacy they afford in this room we share with other babies and adults. It’s just us for a little bit and I talk to him and he looks at me and it feels a little normal. A little.
He started the day with cords and tubes and by the end of the day most of them are gone, but the adhesive leaves marks and splotches all over him. He’s spindly and floppy like all newborns, but I find myself extra critical. Is he normal-floppy? Normal-spindly? Or is this too much floppy? Is it indicative of something? I wonder if we should call our pediatrician, but I’m not sure what she’d DO. She doesn’t have privileges at this hospital and it’s a weekend. (Great Regret The Second: I should have TOTALLY called our pediatrician. Not only do I trust her a great deal, but she could have requested to review his tests and file and she could have at least helped me interpret better what was going on and what to expect.)
I call our insurance and add him, trying not to cringe when I think about what time in the NICU will cost. I am angry. I think he shouldn’t be here any more. He’s the healthiest sick baby I’ve ever seen. His breathing, which was irregular, has stabilized and he’s fine. FIIIIINE. But what if he is sick and I just can’t see it? What if they’re right? What if this is just the start of a really horrible, long, nightmare? I decide that being angry is better than him being sick, because in my version there’s nothing wrong with Preston and he’s totally healthy and that’s much better anyway. It has been really hard to have Claire and Charlotte visit me in my room with no baby. In fact, that’s a really hard part of being here: I can hear the other babies on the floor, but I don’t have my baby with me. In the middle of the night, when I’m alone in that room, it’s really awful.
I am asked to go to a discharge class where they’ll have all my papers printed out. I walk down the hall but as I approach the room I can hear a pair of obviously-new parents talking about how to do something or other with their new baby and I break down in the hallway, skitter to my room and ugly cry in the bathroom. I mean really, UGLY CRY. Heaving breaths. Fat tears. My nurse brings me a box of tissues. She knows right away what triggered it. “Did you see another couple with a baby in there?”
Later, I will have to hold back tears when I see the same couple in the hallway again. They are leaving the hospital, with their baby in a carseat. I am supposed to be doing the EXACT SAME THING AT THIS EXACT SAME MOMENT but instead I am walking to the NICU. I don’t want to get in the elevator with them, I don’t think I could possibly look at that carseat for another moment without bawling, so I stop and pretend to look at the wall. A friend comes by with dinner and it’s a welcome return to normal to talk to her and see her face. She offers to come spend an afternoon or evening with me while I’m at the hospital Monday or Tuesday for feeds. I think that sounds nice.
Every time I feel sad (all the time) I look at my phone. It is constantly lit up with messages of encouragement, love, prayers, support, smiles, cheerleaders, and hugs. It is the life preserver I’m clinging to as I get through my day, always feeling like I’m just about to drown.
Friday, January 25, 2013
This morning, they tell us that Preston is going to be released to nursery in the afternoon. This is Big! Huge! Amazing! news. (A small part of me silently crows I TOLD YOU HE WASN’T SICK.) Chris has been bouncing back and forth between the hospital and the house, where my parents are still staying with the girls. They haven’t been allowed to come visit him in the NICU, but they CAN visit him in the nursery. When he is released to us in my hospital room, we get our first family photo:
It’s so great to have him out of the NICU. SO GREAT. We’re not finished with this mess yet, but this is big progress. We finally get to have our happy, joyous family-meeting-him moments and they’re awesome.
Things are looking up. I’m going to be officially discharged tonight but they’ll let me stay in my room as a “courtesy stay” so he can room-in with me. So, he’s technically admitted to the nursery like all babies on the floor, but he stays with me. My nursing service will discontinue. I am thrilled. The plan now is to repeat the CRP tomorrow to assess progress, so that’s my goal: Just Make It To The Next Blood Draw. Preston will continue receiving his twice-daily IV antibiotics in the nursery, but otherwise he’s all mine in our room.
Saturday, January 26, 2013
My Dad brings me coffee and breakfast early in the morning. He asks me a few things about Preston and for the first time it occurs to me that other people are worried about him too. I have been so busy having my own gigantic pity party I didn’t even realize the rest of my family was concerned about him. I have been telling everyone that he’s probably fiiiiine, but it’s only in this moment do I realize that nobody really believes me. After all, he’s still in the hospital.
Today is CRP day. I have spooled myself up into a very impressive state of anxiety by now. Today’s blood test will either send us on a path home or on a path I have been avoiding thinking about. They drew his blood at 5am and by the time the doctor comes by on rounds they’ll have the result. Rounds could be anywhere from 8am to 1p, so it’s torture waiting it out. I have been told that since Preston “isn’t that sick” that he’s probably going to be the last baby the doctor sees. But, I know the CRP number will have been reported into his file by the lab much earlier so I ask a nurse if she’s seen it.
She makes a very sad face and says that it went up to 8.2.
I deflate. Something is wrong, but what? I envision more tests, more invasive tries to figure it out, more dramatic situations and a much longer stay unfolding. Mostly, I worry about him. I am suddenly sick with the knowledge that my infant son is ill. I pray, seriously and earnestly, for what feels like the first time in my life. I remember hiding in that bathroom and clasping my hands and saying through my tears, “I don’t know what to do. I don’t know what’s wrong with my baby. Please help him. Please help me. Help us find a way through this.” I remember reading Alexa’s book and thinking there was something in there about progress in the NICU not being linear and and it’s important to remember that. I try to remember that. I try to tell myself I just have to make it to the next feed. I breathe deeply. I cry. It’s so hard to know how to feel in this void of information. 8.2! Oh, it’s SO much higher! My poor baby. He’s sick. We don’t know why. It’s the worst feeling in the world. I put my hands on the towel bar in the bathroom and I close my eyes and I talk to God, like I haven’t ever talk to Him before. “Please help my baby, ” I whisper. “Please show me how to help him. I don’t know what to do.”
I have never felt so helpless in my entire life.
When the doctor is ready to talk (about 11am) Chris and I stand nervously over Preston and brace ourselves for horrible words. Except, he says he’s doing great and no! The CRP is down to 3.1 (it was 4.1) and he has no idea what that nurse was saying and he’s healthy and fighting whatever it is but we’ll continue antibiotics and do another CRP in two days, and he thinks it’ll be zero by then, and you’ll take him home on Wednesday. Probably.
And then I start to cry. He’s…okay? HE’S OKAY! OMG HE ISN’T SICK!
I will go home on my birthday without my baby but he will probably come home a few days later, just fine. I consider today’s CRP my birthday present. My son is healthy, today, and the doctor says he should be finished with the full course of IV antibiotics on Wednesday. I start to pump, seeing that I’ll be spending my days at the hospital but my nights at home for a few days. I’ll need to leave some milk for bottles overnight, but I quickly realize that since my milk just came in TODAY (I had a baby three days ago!) I have no supply to speak of and since I’m already stretched thin mentally, I decide to give myself a break, pump what I can, and have them give him formula for a few feeds if necessary. This makes me feel a lot better about the upcoming days where he will be in the hospital and I won’t be there with him all the time.
Sunday, January 27, 2013 (MY BIRTHDAY)
Today is my 34th birthday. Chris and I agree that I win the award for crappiest birthday ever. I’m discharged from the hospital in the afternoon. Preston stays in the nursery. We go home, I see the girls and it’s weird, SO WEIRD to be home and not pregnant and not have a baby to take care of. I pump and I go back to the hospital in the evening.
I made the heart bunting while I was pregnant and all of the nurses just love it. (I thought I might like to hang it in his nursery once we got home, but now I find that looking at it gives me a bad feeling.) I stay in the hospital until midnight or so, and then go home. It’s weird, SO WEIRD to leave him there. But I call and check on him when I wake up in the middle of the night to pump, and I call in the morning. He’s always doing well.
Monday the 28th, Tuesday the 29th, Wednesday the 30th of January
I settle into a routine of spending the morning with the girls and then going to the hospital before lunch and spending the day there, coming home for dinner and bedtime, and then going back for a few evening feeds before coming home at 11 or 12. My parents were incredible in these days and we were so lucky they were able to stay with us. The hospital is only a few miles away but it’s still a big hassle. I know that I probably only have to do this for a few days, but it’s immediately obvious what a hardship this would be long-term. I am thankful, so thankful, that it will only be a few days.
My mom brings the girls up to visit a few times, which Claire really likes.
One of the weirdest parts about going to visit Preston at the hospital is that I just had a baby a few days ago, but here I am putting on real clothes and shoes and makeup like a normal person going normal places. I mean, I know I could just not bother with the makeup but it makes me feel better about the puffy midsection I’m sporting, so whatever. Anyway, it was completely bizarre.
On Wednesday he was discharged. We got him in the car and were driving away when I remembered that I had left about 25 ounces of milk in the nursery fridge. Chris asked me if I wanted him to turn around so we could get it and I said, “No. Nope. I don’t ever want to go back there again. Let’s just go home.”
So, we did.