Having a baby or babies in the NICU (neonatal intensive care unit) can be a very difficult time for new parents. There are times when it is expected that a stay in the NICU will occur but even then it is not easy. I had the opportunity to sit and talk with Emily West, a local Overland Park mom, whose twins had to stay in the NICU for a few weeks. We want parents to know what to expect and what is “normal” for this type of care. We want them to know they are not alone.
Heidi: To kind of get us started can you tell me the story. The birth story and what put them in the NICU.
Emily: I went into labor at 32 weeks the first time. I went into labor twice, once for each baby. Is how I like to think of that. I remember on a Monday I called my mom cause my back hurt so bad but I wasn’t putting two and two together. Then Tuesday was a little bit better. Tuesday night it was bothering me so bad and went and took a hot bath and that eased up and I fell asleep. Slept through the night, and woke up Wednesday and told my husband “ya know I think I’m going to call my OB, this feels a little weird”
Heidi: Yeah, just to be sure.
Emily: I was scheduled for an ultrasound that day, that afternoon. So as soon as the office opened I called and told them I was coming in later anyway but should I come in sooner this is really starting to hurt. They told me they would have her call me once she was out of surgery, by the time she called the pain in my back was rhythmic. I started packing my bag, thinking okay we’re in trouble here. I drove myself to my OBs office which is attached to Overland Park Regional. When she checked me I was dilated to between a 1 and a 2. She put me in a wheelchair and sent me straight over to the hospital. They admitted me. So they started medication to stop the contractions and steroids for their lungs. I stayed 3 days and then went home on very strict bed rest. The contractions in my back never completely went away I was in miserable pain. Made it until 3:30 Tuesday morning my water broke laying in bed. So I went to the hospital, the on call OB checked me and I was at a four. And she, not having the history of the prior week, thought we were going to stop this so she pushed fluids, which made me laugh. We waited an hour while I was on fluids, she checked me again I was at a six. And I could think was “I’m having a planned C-section and I know women who don’t make it to six without and epidural. What is happening? “
Heidi: Yeah, like why am I doing this?
Emily: so finally she called anesthesia and was like okay you’re having these babies. My OB made it in in the very last second. So 7:04am (pointing to William) and 7:05am (pointing to Anna Kate) I remember the OR buzzing with people. They sent down a team for each baby so there were 2 neonatologists, 2 nurses for each of them, NICU staff, 2 OBs and then 2 nurses. So I believe there were 10 people with me and Josh.
Heidi: Wow. Did they talk to you about having that many people in the room to prepare you for that ahead of time?
Emily: Yeah, I knew. I don’t remember who I asked. I had a lot of these conversations with my OB ahead of time. So I did know there would be that many people but I could see how you’d get caught off guard if you didn’t.
Heidi: were you nervous?
Emily: I wasn’t’ overly concerned. I do remember feeling a little guilty about her specifically. So he delivered first came out wailing. Pink, small, but he looked like a normal baby. They showed him to me over the curtain and I remember saying “oh he’s not so small”.
Heidi: and how much did he weigh?
Emily: he was 4lbs 1 ounce and screaming like a banshee. Then they delivered her and said “ok she’s out” and there was silence. And then they held her up and in the contrast, she was 3 lbs 3 ounces, almost a whole pound less and the size difference and she was blue and not making any noise. And I don’t think either one of us said anything. They handed her off to the NICU team and we listened to them bagging her and counting and we heard one little pitiful kind of meow out of her. And then they brought her over to me and the first thing I remember saying was “I’m sorry you’re so little. I really tried.” That was when I just felt bad. She was just so little. But in the end she is out spitfire. So she was on C-PAP in the OR. They did not have to intubate her which was success. That was a really good sign. She was on C-PAP from that morning until 2 that afternoon. So we got really lucky with respiratory issues. So they whisked them away upstairs. That was it. I got to kiss them each then they were gone. Josh went with them. They stitched me up and then wheeled me into recovery. I was alone and my mom and mother in law was there by that point. I remember asking the nurse to give me my phone and I texted and said “either send me pictures or get back down here.” They are pretty dedicated to getting moms up to the NICU as soon as possible so before they spinal even wore off they wheeled the whole bed up to the NICU. I was able to hold him, we couldn’t’ hold her but I was able to touch her in her isolette. Then by the afternoon I came back up in a wheelchair and got to hold them both. We did skin to skin. As NICU entrances go we had a pretty smooth time.
Heidi: Were they telling you those first few hours or even 24 hours any kind of prognosis. Did you have any idea or was it just wait and see.
Emily: we had a pretty good idea of what we were in for. One of the neonatologists had come down and talked to me in the hospital the week before. He had told me that if I delivered that day to expect to be home some time around their due date. We knew that it would be heart rate. He started having Brady events, where the heart rate would just drop particularly when feeding.
Heidi: so no known reason just heart rate drops?
Emily: yep, The electrical impulse that regulates it is immature in preemies. His were never severe. They can lose oxygen saturation. His always recovered fairly quickly. But they can’t go home while doing that. She struggled with body temperature. And then feeding with them. It took 2 weeks before we could attempt oral feeds, they were on a feeding tube. They staff was very committed to getting them as much breast milk as they could. So I pumped as much as I could. Just syringes sometimes less than a mL to give to them. They dropped it onto their tongues. She took right to the bottle. So in two weeks we got the clearance to go home with her. She actually blew through her first discharge date and he blew through his first two. That I think is a really hard thing that people aren’t prepared for. Like it can change so fast. Her first discharge date came out of nowhere. We weren’t’ really expecting it and then all of a sudden they said she could go home that week. So we roomed in which is sort of the last step. For the last 12 hours they put you together so you have sole care of the baby up until you leave. She refluxed the first feeding of the rooming in. She choked on it, couldn’t quite spit it up, gagging. And then she didn’t’ eat well the rest of the night. So she lost weight that day. So we woke up on Thanksgiving day thinking we were bringing a baby home that day with all of our friends and family and she was staying. It was awful. I remember going home and laying on the floor in a puddle and cried. But then she came home two days later. So just as fast as it goes south it can turn around. His third date was finally the one that he came home.
Heidi: Do you think having her go through that, not coming home, when you thought she would prepared you for when he didn’t? Or was it just as hard each time.
Emily: No I think it helped because I got to where it was like “okay we’ll believe it when he’s in the car type of situation. In his case, I fought the first one because I didn’t think his feeding was where it should be. And even when we came home he had some feeding issues. I was not prepared for. I thought once they discharged them they must be fine now. But the amount of outpatient follow-up that preemies go through still blows me away. But when he first came home I slept on the couch with my hand on him in the bassinet and I gave him every feeding. I just didn’t trust anyone else to do it. He would choke and gag and sputter. It was just really intense still. We did about a month with a speech pathologist with a full on swallow study. I cried the whole time. Those were the moments when I really felt guilty. Like he’s having this problem because he’s early, and he’s early because he’s a twin and he’s a twin because I did IVF and the whole thing.
Heidi: So as your telling your friends and family after you’ve had the babies that they are ok but there is going to be a long NICU stay what was their response?
Emily: Everybody knew that that was probably going to happen. The one thing that does stick out in my memory is people saying “oh, going home with out your babies must be so hard” and in retrospect I know what they mean but at the time I thought “well, that ‘s where they need to be” I felt like they were imposing their own heart break on me. When she came home there was a lot of fanfare. By the time he came home I think people forgot we still had one in there. I didn’t keep very many people closely in the loop. The daily ins and outs are just so complicated. Like people would say “what are they waiting for” or “how much do they have to weigh” and there’s just so much more to it than that.
Heidi: well I suppose even though some people are in your life and they care it’s almost easier to just say thank you than to try to explain each and every thing that is happening. It takes a lot of time to educate and then keep people up dated. How did you and Josh handle the visits once you came home? How did you decide who went and when?
Emily: Josh went back to work. I couldn’t drive so we had a schedule of drivers for a few weeks that would pick me up at 10 am for the twins 11am feeding. And then I could only stay a few hours since I was still recovering so they’d take me back home and then Josh and I would go back up after he got home from work. But 10 am was always my arrival. That’s one of the things I wanted other parents to know going into this is that if you can have a consistent routine it helps the staff to know when to expect you. If they have new information or questions for you they know when you’ll be there. Every day I took in a cooler full of breast milk that I had pumped at home. I also brought in clothes because I didn’t like them wearing NICU issue. It was like they were at summer camp.
Heidi: so about your relationship with Josh, was it hard on you guys or did it strengthen you?
Emily: I would say we came together through it. I think the one thing that was hard, which I think is home on any new parents. We had one night where we felt the need to be somewhere other than home or the NICU. That was all we had been doing. We decided to try to go to a movie. Josh didn’t want to miss the evening visit since it was when he saw them. I needed to pump and get that to them. So he went to the hospital alone while I stayed home and pumped. It was such a huge deal we got it done one time, the whole time they were in the NICU. We started going just once a day on weekends instead of twice and that was deliberate. We both knew that we needed to be away from the NICU. We started treating our weekends like weekends. We had our routine during the week. We’d go during the weekend but only once a day for one feed. We’d do other things, like working the yard, ya know, just normal stuff.
Heidi: at the NICU they are safe and well taken care of and you have to take care of you too.
Emily: I mean you’ll go crazy. The thing I remember the most was the sounds. I know our guys setting off alarms, and even though they were never in life threatening situations, just being around it. It grates on you.
Heidi: I can only imagine. What was the best piece of advice you got from either a nurse or a friend that really helped you make it through.
Emily: It was the social worker which everyone has assigned to them. At first I thought, “oh, we don’t’ need a social worker. We’re fine” But it turns out she was really good and helpful. In fact it was her that identified my postpartum [depression] for me. It was her who early on encouraged us to find some distance and take some time. That sounded a little radical and I thought “but my babies are in there. I don’t think I can do that” She said “I know but think about it” I do think that if you’re in for a long term stay you’re going to have to.
Heidi: Do think it helped to find some normalcy in your life so that every moment wasn’t revolved around babies, and schedules, and alarms, and bottles, and ounces?
Emily: yes, that is a good way to phrase it. Normalcy.
Heidi: So talk to me about self care
Emily: you really think I’m the one to ask?
Heidi: well, how did you handle the stress?
Emily: not well and I didn’t realize I wasn’t handling it well until she came home and he didn’t. That was when I broke. I wasn’t able to be with him as often because I was caring for her and I wasn’t sleeping because I was caring for her. I went in to my six week check up with my OB. She asked me how I was doing and I just burst into tears. She said ok, we’re going to fix this. I never thought I’d be open to medication but I realized that something needed to change but nothing was going to.
Heidi: the stress of the NICU wasn’t suddenly going to go away.
Emily: and we didn’t know he would be discharged the next day. If I were to be honest I’d say that my gut reaction to him coming home was fear. I was already not sleeping, we were barely treading water taking care of one preemie at home and now they were sending home the other one and he was the one struggling still with eating. I felt like this is going to sink me. I mean what was I going to do? So what I did was medication, and a doula. And family. We were not alone in our house for weeks. That is my biggest advice for families especially having multiples is help. You have to have help. Two people can not do this alone. When I say we were not alone I mean we had someone in the house at all times for weeks. That is my biggest advice for people having multiples especially preemies.
Heidi: was that tough having people in the house all that time?
Emily: it took some getting used to but you get to know each other and what to expect. It was an adjustment because I’m fairly introverted. It takes an adjustment. I realized I am the conductor of this whole orchestra and that isn’t going away for at least 18 years, I had to just grasp that in my mind.
Heidi: aside from healthy babies what were some positive things you got from the time in the NICU?
Emily: yes, oh my gosh. So much good came out of the NICU. We learned how to take care of them in the NICU. How to give a bath. They were on a 3-hour schedule by the time they came home which was so helpful. We learned tips and tricks from the doctors and nurses. Got through our earliest bouts of diaper rash, and colic and gas.
Heidi: would you say you were more confident than you would have been otherwise?
Emily: that and we came home with a plan.
Heidi: what advice would you give to parents facing a NICU stay.
Emily: do your research. Ask for a consult with the NICU staff to get a clear idea of what to expect. You have to balance leaning into it, and being present and involved but being able to shut it off and compartmentalize what you need where and when. Knowing it ‘s not going to last forever. There is community in there too. I met several people that were going through it too and they added me to a multiples face book group, where it turns out a couple of my friends were already in.