Discharge from NICU

My name is Amanda and I have just joined TeamInspire. I am a neonatal nurse practitioner who is wanting feedback from parents of premature infants regarding the positive and negative aspects of discharge from the NICU. Please make suggestions on how your discharge could have been improved or also share positive aspects of your experience as a parent of a premature infant regarding discharge home. Thanks for you comments.

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my sons discharge followed several days of being told tomorrow, tomorrow, and then again tomorrow. I could not handle being told not today one more time so we finally asked for a meeting with a doctor, we met the doctor who we had never met before that day (spent 37 days in the nicu) and basically told him we were taking our son home unless he got a court order to stop us. He agreed we could take our son home that day without us signing him out ama.

Anyway....all that is to say the nicu is a huge emotional roller coaster and while we know these tiny babies can change on a dime thinking you are finally bringing baby home and then being told we couldn't was very taxing. It was always something, 1st because the nurses didn't dc his caffeine and he needed it to be under therapeutic levels, then because he had a brady at night and he needed to be brady free for 48 hours. He has never been brady free for 48 hours and we were simply being juggled from doctor to doctor, so the doc on Tuesday thought no big deal, lets send this baby home on a monitor and then the doctor on Wednesday thought no way.

So I would have to say my only real suggestion is to try not to make it any more emotional than it already is, if you don't know when a baby will be discharged it is easier to deal with than to be sitting there with car seat, prescriptions, doctors orders and be told no not today. Even a phone call at home that morning so I could have prepared myself ahead of time would have been appreciated.

We were also told our discharge summary would be faxed to our pediatrician, eye doc, ot/pt and none of that happened.

The positives were that the discharge coordinator handled calling in prescriptions and getting them for us, she also made sure we went home with everything we would need for a couple days without having to go out.

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After over 6 mos in the NICU, I had ceased dreaming of "the Big Day" when my son would be discharged. In fact, until the day we were actually leaving and I counted the days we had lived there, I could not have even given a good estimate as to how long we had even been there. I had just gotten used to being there and was so exhausted and used to being disappointed that I tried to avoid adding to it.

Our discharge, however, went really quite smoothly. We had all the appropriate people come speak to us (social worker, discharge specialists, NNPs, docs, etc).
We had been there so long that we had an amazing amount of medical professionals come to his bedside and truly celebrate with us; it felt absolutely wonderful to know how loved and cared for our family was. They each took turns holding him and carrying him around and showing him off to the others, "He's REALLY going home, can you believe it" they would all squeal!
The only hangup we had was with the home nursing company. He came home with Broviac, TPN, Lipids and an ileostomy so we required sporadic check-ins with a nurse at home. However, that company's mistake had nothing to do with the NICU.

I had always thought I would be overjoyed with happiness the day of discharge. However, I knew we still had a long road ahead of us, including at least one more major surgery, so leaving the NICU wasn't "the end" by any means. After I walked out the doors of the hospital and everyone else had gone back upstairs, all I could think about was the families that were still grieving inside. I had a sort of "guilt" for leaving because for months I watched families taking their babies home and I hated them for it, as irrational as I knew it was.

If I had any suggestions, it would be to try and prepare parents for what they may experience emotionally once at home: isolation (esp during RSV season), guilt, depression, stress, obsessive worrying, etc. Going home is just one step in the preemie journey and I think after days/months of being disappointed, it is difficult for parents to look beyond the "Big Day." A little heads up can do wonders in preparing us in hopes of minimizing the shock that sometimes happens at home.

Thanks for the interest in NICU parents!!!!!!!!!!!!

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I also went thru the "you'll go home tomorrow or the next day" routine a few times too. It was hard but it really wasn't the fault of anyone in the NICU. DS did some strange things at the end - maybe he wanted to stay longer haha. Anyway I wasn't even planning on him going home the day he did. I got a call from his nurse in the morning and she said "How would you like to take him home today? I'm gonna make it happen" And she did!

Like a PP stated, the worst part of going home was after we were home. I didn't know what resources were available, how he should act, stress, depression. It was all very overwhelming and I felt utterly alone because I didn't know anyone else who had ever had a preemie and it was right before RSV season so I knew the isolation was coming. I did finally find this website and it helped me tremendously so I would suggest giving this sites info to all parents at discharge :)

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Our son spent 101 days in the NICU, 95 of which were at JHH in Baltimore. His primary nurse thought for sure he would be discharged from there but he just couldn't get the bottle feeding down pat (she was the only one who could get him to take the entire bottle each time) so he was transferred to a hospital much closer for 6 more days. Anyway, b/c his primary thought JHH would discharge him she was very organized and slowly worked on all the paper work and had EVERYTHING ready for the new hospital when our son would finally get to go home. So they were great. However the next NICU refused to use anything from the previous NICU, wanted me to take the classes over, etc... I refused and said I has just completed all the requirements and there was no reason to go through everything again. The level of respect was completely different at the 2nd NICU and they were definitely not as organized.

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This is the most irritating story about our discharged:
http://www.inspire.com/groups/preemie/discussion/how-do-i-get-them-to-liste n/

Some other things that come up on the way out or soon thereafter. No one is prepared for RSV isolation at home. It's almost like prison. And family often don't understand:
http://www.inspire.com/StephShelby/journal/planning-homecomming/

http://www.inspire.com/groups/preemie/discussion/share-your-feedback-and-ex perience/

http://www.inspire.com/groups/preemie/discussion/feeling-down-for-no-reason /

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I think our discharge went well, although we also were let down a couple of times when baby did something unexpected and it was delayed a couple times. Our NICU was very impersonal, so we didn't have a big farewell or anything, it was just kind of like we sneaked out, lol. The problem was that after we left the NICU, we never heard another word from anyone there again. They kind of dropped us like a hot potato. Nobody called us, not the social worker, doc, nobody. I was left to figure everything out on my own. Luckily, our pediatrician was wonderful so we had excellent care after discharge.

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We were discharged after 5 months with home oxygen, apnea monitor, pulse oximeter, and like 6 medications. We roomed in for 1 night before coming home. We had trouble getting medications for discharge and I wish we could have picked them up a few days before discharge instead of dealing with a pharmacy that didn't have liquid aldactone and chlorothiazide and sodium. It almost delayed our discharge a week but the nicu pharmacist made it for us last minute. It was terrifying and our son was so stressed that first day. He didn't get his nap and he barely ate and started to desat and I was sure we would have to readmit him to peds. Luckily he settled in the next day and started to improve. It was really nice that the social worker and the physical therapist gave us their cards and emails in case we needed anything. It would have helped if we were given a handout with the follow up and who we would be contacted by because we forgot and got them confused. We did get a discharge summary with meds and our first ped appt but we forgot the rest. When were we going to be contacted by our regional early intervention program? What do they do again? And we would see a physician at the high risk clinic at six months? I forgot all that stuff and wouldn't have known.

I just remember being so terrified. Im an ICU RN and I was still sooo scared. Probably because I was planning for all the worse case scenarios. Our son basically stopped eating as soon as he came home, he had undiagnosed reflux and an oral aversion and the nursing staff never reported it to prepare us for it. They were just getting him to take it and that probably made it worse.

Hope this helps.

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We were discharged on a Sunday, very unceremoniously, with a weekend nurse that we had never had before. While we were ecstatic that we were getting to leave, it really wasn't made special or anything. I think when you finally get to leave, they could do a little something. We had been there for 63 days, and it just seemed weird that we had a nurse we'd never had and we just packed up and left. I think there should be a little something done to celebrate getting to leave.
Also, I do agree-after being scared to death while DS was in the hospital with RSV, nothing can prepare you for the isolation!

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We were in the NICU for 129 days, and were discharged with oxygen, NG tube and an apnea monitor.

Unlike so many of the woman on this board, we had a great NICU with great doctors and nurses. Our NICU invited parents to participate in rounds twice a week, and I'll never forget the emotions when our neo said, "And I think we should talk about sending Elliott home this coming weekend." Oh my gosh! I cried and it was fabulous. But that was on a Monday... so the rest of our week was VERY busy!

Thankfully, Elliott never had much trouble with A's and B's, so we didn't have the kinds of set-backs that some parents experience. And our doctor felt comfortable with the care Elliott would receive at home, so he let us come home with a ng tube. Our discharge coordinator made sure we had all the proper training, both myself and Dad. We did a basic CPR course, worked with changing the ng tube (proper placement, checking for digestion, etc), had lessons on the monitor. We roomed-in for several days (1 with hospital monitors, the last two with the home monitor). By the time we came home, we were confident we at least knew what we were doing with all of the equipment.

Our neo, nurses and discharge coordinator all helped make sure all of our initial appointments were set for us with our ped., newborn follow-up and home medical supply. The really worked to make sure the process went as smoothly and stress-free as possible for us.

We were discharged on a Sunday. Our neo wasn't the on-call doc for that weekend, but he was there anyway. Our absolute favorite nurse was his nurse that night before, so we got to spend time with her, take pictures and say good-bye in the morning. Our 2nd favorite nurse (though it's really hard to place them like that) was off that day, but she came to say good-bye, too. It was a very emotional day for us. The NICU had really become our second home, and it was odd to finally say good-bye. But the discharge process went smoothly, and it felt good for everyone to make such a fuss over saying goodbye to us, and especially to Elliott!

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Wherever possible, think of the parents or primary care giver and how things will be after they get home, without fresh staff every shift, without medical backup in the building (for those of us not in the medical field), and who will, at some point require sleep.

Really consider if medications may be adjusted so they are given at less frequent intervals allowing parents more sleep time, and make other adjustments to reduce the sheer number of things wherever possible, that are required for baby's care. Just by adjusting all four of our child's meds by one or two doses and monitoring very closely, our child's pediatrician made a huge positive impact on our family life.

Think of it as a HUGE change in the level of care, with caregivers who will likely be very compromised quickly if they aren't already, just from the emotional aspects of dealing with parenthood in the NICU. I cannot underscore this enough. Even if you are the paragon of stability and mental health and overall well being, it is stunning, the changes that bringing a preemie home from the NICU involves. The baby is likely on a 3 or 4 hour feeding schedule, often with medications needing to be administered at regular intervals, in our case, equipment to take home and deal with, and then there is the pumping breastmilk, and possibly breast feeding too, and someone or both parents may need to work, and maybe other children, maybe other children or parents in the home with special needs as well.

There is a very steep learning curve and then sleep deprivation that any baby will bring, but a preemie has other needs in addition to regular baby. This makes for an environment that is extremely difficult to navigate. There are often many appointments.

In our case, our daughter's stay was 100 days and it did not go well. She had a rough ride with lots of issues. I thought of us as having lots of very supportive family around, and many were assuring us all along they would be there, if our child survived, to help if she got to go home. That turned out not to be the case, and I have learned from other parents of preemies this is often the case. Think of the single mothers who may not even have a job or a place to live.

Our family was so taxed by "supporting" us during the NICU stay, no one was around when she discharged. For weeks and weeks no one knew if we were about to have a funeral, or what was happening. We did not know how alone we would be until the day before we discharged and we called everyone to line up help at home. There was no one. Again, this turned out to be the case for every family I can think of that we met while our child was in the NICU who had an extended and very grave time in the NICU. Some of us ended up helping each other whenever we could. None of us wanted to have our child cared for by someone who couldn't perform CPR or deal with breathing issues anyway, at least for a while. So, another note, the bonds families form with each other while in the NICU can be critical to your patient's future being brighter.

Also, realize that the world of the NICU is very extreme to the rest of the world, and though we parents often understand the necessity of changing our lives so much to adapt to the needs of our child, many have discovered our family and friends just cannot understand the reality of the fragility of our babies and think we are being overprotective, and ostracize us. If it hasn't already become an issue while baby is hospitalized, it often becomes a huge issue quickly after discharge. You can verify this if you explore a little on this site. So, some written letter from the medical team about guidelines regarding baby's care, like avoid contact with individuals who are sick, be extremely cautious during RSV season, things like that can really help. Then we can say "doctor's orders" to our families who want to visit when they have colds and don't understand why we refuse.

If you've managed to read this all the way through, I commend you and thank you deeply, for your interest in this topic. It has a huge impact on the longterm outcomes for your tiniest patients.

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The hardest part was our NICU's "5 day count down". I really wish they would never tell us they started it because if any baby has ABD's during those 5 days, the countdown starts over. Although as an RN myself I understand that....but I am a PARENT first. The emotional roller coaster for us never ends but it does help when the staff is supportive of your needs.
I had a nurse tell me the was VIOLENTLY OPPOSED to me doing kangaroo care bc at the time my little girl was still on a vent and had been diagnosed with PPHN. I went to the charge nurse bc in my mind I felt if her mommy got to hold her maybe just maybe her BP would come down. I got a new nurse and did roo care....PPHN was gone:)
Our unit also has the parents room in the night before d/c. We loved that. We were completely informed and felt very comfortable bringing her home after this experience.

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