What is your experience with the NICU? Give & Get Support

Posted by Lindsay, RN @lindsayvitse, Sep 15 3:11pm

When imagining your life with a new baby, you probably didn't have thoughts of a prolonged hospital stay in the neonatal intensive care unit (NICU). Parents and family members of a baby requiring an intensive care stay often face anxiety, depression, post-traumatic stress syndrome, or complicated grief during the NICU stay or after.

You're not alone. In fact, these feelings and health consequences have a name: Post-Intensive Care Syndrome – Family (PICS-F).

This is a place where you can share your NICU experience. You may wish to post a reflection, a current challenge you're going through, or your story about your infant's hospitalization. Pull up a chair, meet others and introduce yourself.

Tagging @amandacgrow @kristap31 @TonyHart87 @mightymylesmom and @saravow. I think this is a discussion you would like to join. Help give and get support. What's your NICU experience?

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My wife and I's first child was delivered via emergency C-section. My wife had pre-eclampsia and was hospitalized at Mayo Clinic in Rochester for a few days before delivery. Being at only 30 weeks (and also growth restricted) we were trying to hold on as long as possible. She received a shot for the baby to encourage lung growth (I think) as soon as they knew there were issues. Over the days my wife's BP spiked and we had to deliver at 31 weeks and 4 days. The C-section went well and my daughter even let out a small cry with her little lungs, the only real noise we'd hear out of her for weeks. She was 2 pounds, 7 ounces. She was put into a transport to be taken to the NICU and my wife and I got to touch her hand and see her for a few minutes before she was rushed off.

I got to see my daughter in the NICU the next day and do skin-to-skin "kangaroo" care. My wife, still recovering and being on magnesium to reduce stroke risk from a spiked BP, didn't get to visit her until 2 days later. My daughter was on oxygen for a few days and constant shifting for heart rate concerns. She also had a feeding tube through her nose. We'll always remember the sound of those monitors and alarms as we spent every minute we could over our 10 days in the NICU. The staff was fantastic (such amazing nurses!) and we got to hold her kangaroo a lot. We then moved to the intermediate care nursery for another 32 days. We celebrated the little things, first bath, gaining weight, more movement and noise, and eventually breast feeding.

This 42 day experience has had a lasting effect on us. It was definitely severe trauma. As new parents, we were shell-shocked as one of the happiest days of our lives is now indefinitely linked to the hardest weeks of our lives. We worry more. We've taken on a stress that has never really gone away- a waiting that the other shoe is bound to drop and something go wrong. It sticks with us. My wife had a panic attack when our daughter had to be admitted for Pneumonia at 13 months and put on oxygen for 2 days. But we've gotten through it all together. My daughter is now a healthy almost 4 year old, whose only real issues have been her being a little smaller, she's a little lazy eyed (needing glasses and maybe surgery some point soon), and has weaker lungs that require a nebulizer in the winter if she gets a cold. We also made it through a "normal" pregnancy and birth and have a healthy 9 month old boy now too.

It gets better but is any one else living with this worry after a NICU baby?

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Hello!
My NICU story began on April 5, 2015. On that day I, very quickly, delivered our 26 week gestation baby girl. To make this story a little more stressful, we delivered at OMC’s hospital-not Mayo. Lucky for all three of us, Mayo was only three miles away and the NICU transport team was able to get there in the nick-of-time and assist Finleigh after birth. She was a fragile 2lb little girl who was taken to St Mary’s. We were in the NICU for 89 days, being released eight days before my due date on July 1st!
Of course there were ups and downs. We battled and fought staph, MRSA and a gamut of other things. Finleigh was intubated for about 12 hours, then on CPAP for almost the remainder of our stay. But, she came home oxygen support free and healthy. She’s never stopped growing, and if you do your math right, Finleigh is a vibrant, funny, very busy (almost) 5 1/2 yr old today. She just began kindergarten!
Upon our arrival home, we used Rochester Public School’s birth-3 program (teacher, physical therapy and speech). We also were followed with the Mayo NICU follow up clinics. Today, we still use speech therapy in Byron Public Schools.
So all in all, Finleigh has no lingering effects from her premature birth, but I still find myself pushing her to keep up and fear she’ll fall behind.

My journey with the NICU continued in May 2018, with another quick delivery of our son, Kayson. He was born at 33weeks (planned a bit better, this time at Mayo) and we found ourselves at Methodist for 12 days.
In perspective, this seemed much “easier”. Definitely was a smoother stay. Kayson did not require any oxygen support. He did have some jaundice and needed time to learn to eat! Today, you can find Kayson doing all your typical two year old boy activities. He’s a big dude with a fun personality. Again, we don’t see any lingering effects with Kayson.

Please feel free to reach out and let me know how I can be of assistance and/or support! I think between my two stories, I’ve seen it all! I’d love to hear your story, too.

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@lisa0713

Hello!
My NICU story began on April 5, 2015. On that day I, very quickly, delivered our 26 week gestation baby girl. To make this story a little more stressful, we delivered at OMC’s hospital-not Mayo. Lucky for all three of us, Mayo was only three miles away and the NICU transport team was able to get there in the nick-of-time and assist Finleigh after birth. She was a fragile 2lb little girl who was taken to St Mary’s. We were in the NICU for 89 days, being released eight days before my due date on July 1st!
Of course there were ups and downs. We battled and fought staph, MRSA and a gamut of other things. Finleigh was intubated for about 12 hours, then on CPAP for almost the remainder of our stay. But, she came home oxygen support free and healthy. She’s never stopped growing, and if you do your math right, Finleigh is a vibrant, funny, very busy (almost) 5 1/2 yr old today. She just began kindergarten!
Upon our arrival home, we used Rochester Public School’s birth-3 program (teacher, physical therapy and speech). We also were followed with the Mayo NICU follow up clinics. Today, we still use speech therapy in Byron Public Schools.
So all in all, Finleigh has no lingering effects from her premature birth, but I still find myself pushing her to keep up and fear she’ll fall behind.

My journey with the NICU continued in May 2018, with another quick delivery of our son, Kayson. He was born at 33weeks (planned a bit better, this time at Mayo) and we found ourselves at Methodist for 12 days.
In perspective, this seemed much “easier”. Definitely was a smoother stay. Kayson did not require any oxygen support. He did have some jaundice and needed time to learn to eat! Today, you can find Kayson doing all your typical two year old boy activities. He’s a big dude with a fun personality. Again, we don’t see any lingering effects with Kayson.

Please feel free to reach out and let me know how I can be of assistance and/or support! I think between my two stories, I’ve seen it all! I’d love to hear your story, too.

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Thank you for sharing @lisa0713! Wow 26 weeks, I couldn't imagine. That was quite a journey. I'm glad everything has been going well. Yes, we did Birth-3 too. What a god send. How nice that they come to you instead of having to go in for constant checkups. I know exactly what you mean about the fear of them falling behind. Who knows if that will ever go away. Early intervention is so important! Did you have any panic attacks or feeling like hear-we-go-again at all when you were in giving birth to Kayson?

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@TonyHart87 and @lisa0713 it sounds like your infants were well taken care of in the NICU by the nursing staff. How did you handle the transition from the NICU to home? What was the scariest part of this transition home, especially as new parents?

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@TonyHart87

Thank you for sharing @lisa0713! Wow 26 weeks, I couldn't imagine. That was quite a journey. I'm glad everything has been going well. Yes, we did Birth-3 too. What a god send. How nice that they come to you instead of having to go in for constant checkups. I know exactly what you mean about the fear of them falling behind. Who knows if that will ever go away. Early intervention is so important! Did you have any panic attacks or feeling like hear-we-go-again at all when you were in giving birth to Kayson?

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I enjoyed reading yours as well! Yes, I loved the reassurance birth-3 provided. They were always able to help answer questions and provide additional contacts and resources if needed. I wouldn’t say I had any anxiety attacks. I did have a moment where I just started crying thinking I didn’t know how I could do it all over again. Lucky for me, it seemed much easier the second time and a lot less intense. My deliveries were so fast I honestly didn’t have time to panic. And after, I rode that level of adrenaline and it pushed me through. Both children have had very little set backs since discharge 🙌🏼

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My story begins with 9 years of infertility, 70 lb weight loss, and finally getting pregnant. Then at 25 weeks and a bifurcated uterus, I had a partial placental abruption while on a cruise to Alaska and then spent two weeks stabilizing in a Seattle Hospital. After I stabilized, I was discharged but not to my home state of Wyoming (because we don't have any NICUs). If I wanted to be discharged, I had to move to a city with a Level 3 NICU. My choices were Billings, Denver, or LaCrosse. My husband and I chose LaCrosse because my in-laws lived in Onalaska. (I can't make this stuff up!!!!)

We made it to Wisconsin and a couple more weeks. My son was born at 31.5 weeks. He was early but did not require the care that many infants require at this age. He did not require oxygen (I did receive 2 Prednisone shots at 25 weeks when I had a partial placental abruption on a cruise to Alaska and was told that this helped with lung development). He did have to be placed under a bilirubin light for a few days. He was tube fed for a while since he had not developed the sucking reflex (this develops around the 32nd week of gestation) and we had to teach him how to do this. He received donor milk until my milk came in, but then I pumped and he received my breast milk via tube, and later by bottle. We were in the NICU for 25 days.

We stayed in Wisconsin for a month after he was discharged. He didn’t have as many follow up appointments as I thought he would. One of the more specific appointments we had was to the ophthalmologist to look at his eyes. Again, he did not require the treatment/follow up that many of his peers required being born at 31.5 weeks. After we left Wisconsin, we transferred care to our local pediatrician and continued to go to the usual milestone appointments. My son was evaluated to wear a helmet for his misshapen head, which we declined. He also completed a Birth to 3 programs once we returned to Wyoming.

The scariest part about discharging from the NICU was one day they were telling us that we would be here for a while longer (they kept telling us he wouldn’t be discharged until his original due date of Nov 2nd) and the next day they were discharging us (he was discharged Sept 28th). I was nervous about putting my son in a car seat. He was so small. I was also anxious about him sleeping through the night and not waking up (having him connected to monitors in the NICU was actually very reassuring).

My son is now six and people just can't believe that he was premature (his parents are huge though…). He is doing very well and is very creative and doing well in school. One thing I do wonder about is if all the lights and noises that he experienced during his first 25 days, has affected his ability to focus and adapt to stimulation (mostly noise)?

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@maritfraune

@TonyHart87 and @lisa0713 it sounds like your infants were well taken care of in the NICU by the nursing staff. How did you handle the transition from the NICU to home? What was the scariest part of this transition home, especially as new parents?

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Thanks for asking. I would say coming home with Finleigh was definitely much scarier than Kayson. I think I was most anxious at night. Just not knowing what to expect and for three months, I never took care of the night shift. Getting up once or twice to pump and go back to sleep is a lot different than caring for a crying baby, feeding, pumping and being sleep deprived!
I left feeling confident I could care for her, just anxious in the evenings. It eventually passed, but took time. Lucky for me, we have family close by, so they were just a phone call away!

I also was lucky my employer agreed to giving me an extended leave. I did work part time after delivery for three months while she was in the nicu, then a full 12 weeks at home. I know not everyone’s as lucky. Financially, it is tough though. My leaves were unpaid.

You are right, my care in the nicu was nothing short of fantastic!

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Glad it was easier the second time around @lisa0713. Our second birth was so smooth too, we couldn't believe it was over when we were holding him.

Good question @maritfraune, the toughest part of the transition was being handed a tiny baby to take home without any help. Very similar to @slpb , We always had all the help of the nurses, so taking her home by ourselves was stressful. We were most worried at night, thinking she might stop breathing. That took almost a year before we got over that fear. We still have a camera in her room now (and she'll be 4 in Dec), but it's mostly to make sure she goes to sleep and hasn't rolled out of her bed. Lisa, I'm glad that you got an extended leave! That's amazing.

Welcome @slpb! Thanks for sharing. It seems like quite the journey on your end too there! I'm sorry you had such complications. He got released at about 36 weeks then? That's crazy, what a strong guy! We were released a little after 38 weeks. Glad everything turned out well and he is doing fine for both you and the baby. We wonder about the noise thing too. Ours has great focus (especially for books) but she certainly sleeps better at night when we have the white noise machine on (we have a Mella alarm clock). It was about a year and a half before our kiddo slept through the night. Did anyone have a problem with their preemie sleeping?

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What great stories, thank you @TonyHart87 @lisa0713 @slpb for sharing your experiences and being open to starting the conversation. The NICU is an amazing environment but definitely can pose challenges and lasting effects. It is a common theme hearing about those first few (weeks or months even) of uncertainty at night. What seemed to help most with these difficult nights? Was it keeping on a schedule? Time going by? Reaching out for help?

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@lindsayvitse

What great stories, thank you @TonyHart87 @lisa0713 @slpb for sharing your experiences and being open to starting the conversation. The NICU is an amazing environment but definitely can pose challenges and lasting effects. It is a common theme hearing about those first few (weeks or months even) of uncertainty at night. What seemed to help most with these difficult nights? Was it keeping on a schedule? Time going by? Reaching out for help?

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Honestly just time helps for when they sleep at night. They get stronger every day. Having a baby cam with a good zoom and good audio helped too when it got to the point that she didn't sleep in our room. I still look to see if she's breathing sometimes and she's almost 4 but I think it may be more out of habit then fear at this point. What did everyone else use at night to feel better?

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Hello! I delivered my daughter Ella in July 2019. She was born at 23 & 0 and stayed 142 days in the hospital. Before her delivery I really didn’t know babies survived before 24 weeks. I wish I had done more research when I started having complications, but I really thought we would make it much longer in the pregnancy. I still carry a lot of guilt for not giving her a healthy pregnancy. I’ve always been a laid back person, but I have a developed anxiety since the NICU. Time and talking about it does help though!

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Wow! What a great story! Truly amazing! These babes are out to take on this world! Ready to do big big things!

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@stephmingus

Hello! I delivered my daughter Ella in July 2019. She was born at 23 & 0 and stayed 142 days in the hospital. Before her delivery I really didn’t know babies survived before 24 weeks. I wish I had done more research when I started having complications, but I really thought we would make it much longer in the pregnancy. I still carry a lot of guilt for not giving her a healthy pregnancy. I’ve always been a laid back person, but I have a developed anxiety since the NICU. Time and talking about it does help though!

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Welcome to Connect @stephmingus . That is quite the hospital stay! She is so strong (and you too)! My wife has the exact same feeling of guilt over our daughter being born a preemie (31 & 4) and growth restricted. I'll always remember her crying and saying "I just couldn't protect her. I was supposed to protect her." It's tough to feel that it isn't our fault. I was also a more laid back person, I still am for the most part but did pick up a lot of anxiety along the way though mostly around health, I've just been trying to compartmentalize it and it has faded some as time has gone on. It looks like Ella is about 15 months (11 month adjusted), how is she doing overall? Are you getting help for anything?

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