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Preemies
Discharge Experiences...Q/A for the blog
Let's work on a post for the very empty "life after discharge" tab on the blog. I'll compile all your answers into a few posts to help answer common questions about discharge experiences.
If your preemie is already at home:
what are your experiences with discharge? What was the process like at your hospital? Did you have much warning? Training? Tests?
What were the first few days at home like for you? What helped in those early days? Advice for people nearing discharge? What was it like emotionally?
If your preemie is still in the NICU:
What do you wish you knew about discharge?
This discussion has been closed.
Re: Discharge Experiences...Q/A for the blog
Getting ready to go home was: hearing test (Henry failed one ear first time, passed on 2nd try which is common), carseat test (brought the carseat in about a week before d/c and got this done so it was out of the way), and had to decide about circ or not.
We were on a 5 day brady count down so it felt like we were on eggshells every day and wanted to be at his bedside as much as possible to make sure he didn't get stimulated unnecessarily (self recovered bradys were ok for going home). We packed up all my frozen milk and quickly realized we needed a chest freezer. Then we worked on making f/u appts with the pedi and learning how to mix 24 kcal formula.
Ask your nurses to get any needed discharge teaching done ahead of time once you know you're headed towards home. Much of it may be stuff you already know (like bathing, temp taking, when to call pedi, etc). It's nice to have this done before the day of discharge.
On the day we were so eager to get out.the.door, but had to wait for rounds, his discharge physical and paperwork. Then we just walked out the door with him in his carseat- it was almost anticlimactic, but was AWESOME all the same.
Early on at home I was glad to have a nursing "station" set up. I had a recliner rocker in the living room with snacks, water, computer, remote all within arm's reach. I basically camped out with him and watched movies/TV. We were glad to have a pedi appt 2 days after getting home to get reassurance about his weight. I have continued to check his weights regularly at a breastfeeding store and support group near my home. I think regular weight checks and a good LC on speed dial are key for BFing mommas!
In the early days, I was watching his breathing all.the.time. I thought it would NEVER get better. Then slowly, but surely, I began to see that he was just fine and worried less. It was a gradual process though.
Enjoy it and take LOTS of pictures!
BFP#2 3/16/11, beta 138; 4/12 Baby/HB DS born 9/10/11 at 29w4d due to partial abruption and PTL
BFP#3 8/19/13 Another boy! 17P, modified bedrest and Nifedipine helped us have a termie! DS2 born 4/19/14 at 38w5d.
what are your experiences with discharge? With the twins they came home at two seperate times. When DS came home first it was bittersweet, I cried, oh did I cry. Leaving behind our "home away from home" for months, and leaving behind DD. We were so happy to have DS home, but leaving DD behind was sooo much harder then the first day leaving the hospital empty handed if you will. They days leading up to it we were excited and nervous. We found out that he was going to need O2 (for feeding) and a monitor about a week before he came home and it was so much chaos getting that all coordinated.
What was the process like at your hospital? At our hospital we had to "room in" and stay a night (or two) prior to discharge. We had to be trainned on the O2 and on the monitor. We also had to do CPR trainning...<--- This was at the hospital DS was discharged from. The hospital where DD was transfered and later discharged, we also had to watch videos on SIDS, a G-Tube trainning video and a few other "caring for preemie" videos. We also had to have pump trainning for DD's feeding tube and trainning on how to care for her G-Tube.
Did you have much warning? With DS we knew a week ahead of time, but didn't have a "set" date. With DD we had a weekend.
Training? See above
Tests? Each baby had to pass a car seat test. And they both had a modified barium swallow shortly before dischage as well as MRI's to check on the resolution of their brain bleeds. DD was also evaluated by the hospital's developmental clinic prior to discharge and the therapist gave us things to work on at home while we waited on her EI eval.
What were the first few days at home like for you? With DS the first day was almost what I would except bringing a baby home (minus the O2 and the beeping monitor.) Plus he had us worried because he wasn't really interested in eating when he first came home, luckily that was short lived. The following days were chaotic, because we were constantly running to the NICU for DD and trying to balance DS's needs. Once we brought DD home, to be honest it was so peaceful. We were able to get into a good routine and DD settled in so nicely.
What helped in those early days? Honestly the thing that helped the most in the early days was SPACE. Time for us as a family to get used to having one and then two babies at home, and time for them to adjust without being overwhelmed. And our home health nurse that was there within a day or two of their discharge was such a God-send.
Advice for people nearing discharge? Be patient (easier said then done, I know). Ask lots and lots of questions. Ask if your insurance will cover a home health nurse to come in once a week, once every two weeks, whatever... to help monitor weight gain etc. Get a planner...you'll need it to keep track of all the appointments in the coming months. Keep copies of the discharge summary in your diaper bag, should you need it. We also got a folder for the diaper bag and kept all their various papers from each appointment because often we'd need those papers for the next appointment or to relay things to each specialist or the Pedi.
What was it like emotionally? Overwhelming and realiving all at once.
what are your experiences with discharge? Exciting and rushed. There was some confusion because he was suppose to be circumcised and the NICU blamed the docs and the doc blamed the NICU if he got circumcised he would have to stay another 24 hours. We took him in to get circumcised to the doc office about 2 weeks after discharge.
What was the process like at your hospital? They just told us he was going home the morning of. The night he was admitted they told me he would come home around his due date. I didn't ask again. On Wednesday one of the nurses told me to start getting ready he would be home by the weekend -he was home Thursday. He came home at 35 weeks (1 week in NICU)
Did you have much warning? We called in the morning to check in before we went to see him. They said he would probably be going home that day - bring clothes for him. When we got there they started packing him to go.
Training? We had to watch a CPR video and then be "quized" by the nurse.
Tests? He had a hearing test and carseat test. We sign the okay for the hearing test when he was born and the carseat was brought in within 3 days of him leaving.
What were the first few days at home like for you? Excting - a little scary. He was alternating nursing a bottle feeds it was overwhelming feeding and pumping at night. He slept alot and was pretty much 3 hour scheduled from the NICU and I was waking him to feed every 3 hours
What helped in those early days? Family cooking and cleaning for me
Advice for people nearing discharge? Keep the discharge paper they give you. I have refered back to it every time I fill out paper work for docs, IE, and starting school.
What was it like emotionally? Overwhelming and exiting and happiness.
what are your experiences with discharge? What was the process like at your hospital? Did you have much warning? Training? Tests?
What were the first few days at home like for you? What helped in those early days? Advice for people nearing discharge? What was it like emotionally?
One of the nurses leaked to me that he was "on the launching pad to come home". I remember that moment vividly. He was four pounds, breathing room air, taking all feeds by mouth, and keeping temperature. He just had to go 5 days without an 'incident.' No A's or B's. DS was about a month old at this point. I got very very excited because that was over a month before his DD! More nurses started to buzz about it. "I hear he'll be leaving soon!"
It's so hard to stop your heart from leaping with joy - but I learned I had to. DS wasn't ready to come home. He'd brady during his feeds every day (choking) - around feeds in particular, but lots randomly, too. This was the beginning of the end for me. I'd ask how many whenever I called or showed up - even before I asked his weight. Pretty soon the nurses would just scrunch up their faces when they saw me (or change their voice if by phone - "T's been naughty tonight!"). I dreaded my first interactions with them. His NICU pod emptied. The cribs were rearranged. I stopped talking. There was nothing left to say.
If I heard "he'll grow out of it" or "he just needs to get a little bigger" I thought I'd go nuts. He was shuffled into this dusty "transition" nursery they opened for six cribs with six babies who each had an issue they weren't growing out of. Anyway, he came home on a monitor a month after "launching pad" status and remained on it for an additional four months. I felt bitter.
I wish someone had told me sooner into our stay that A/B's can be such a long battle. I tell people here - it might not be tomorrow or next week or even next month. It isn't what we want to hear - but who wants to let their heart soar with hope every time LO makes it a shift without an episode?
This said, I guess you'd say we had a lot of warning. But because it dragged on for so long I didn't believe in it anymore so when the time really came I was rushing to get ready.
We had monitor training - infant cpr. Nurses had given us tips.
It's hard to be ready when your baby has been raised by nurses. You finally have to throw out your own diapers and feel like you're breaking the rules when you do. You're worried because there aren't beeps and boops communicating in the background.
Someone loaned us a cradle with wheels and it became our transport around the house. We'd pile the monitor and whatever he needed and wheel it to the room we'd live in for the day - plug him in and just live life.
It was late spring and rainy most days. I have never used Pandora as much as those first couple weeks. I tried to stick to his schedule. It was stressful learning to pump and feed separately. It was hard having him tethered to a box. I spilled a giant box of nuts and seeds all over the kitchen because I hadn't eaten all day and I thought I could juuuusst reach - but I needed another inch and didn't have it. I burst into tears.
While I have many fond memories it was a hard time. DS was still bradying out of control and having a couple episodes a day where he turned color and went limp. I was scared.
Two weeks later he had to be readmitted and the house never seemed so quiet. I had to force myself to go to the hospital when before (even at the end) I was so excited to go - I just wanted to be near him. The second time, I just wanted to stay in bed all day and cry. I was exhausted and broken hearted. Luckily he was only there for 8 days but those were 8 long, emotional days. I didn't get to know the staff at the second NICU. I didn't care and didn't want to make small talk. I asked them to make note of that on his chart - to just leave me alone
It's terrible remembering all of this.
For context, my son was born at 26w3d while I was on a business trip 300 miles from home. We lived in a hotel for the 70 days he was in the NICU.
what are your experiences with discharge? What was the process like at your hospital? Did you have much warning? Training? Tests?Our son's limiting factor was his brady episodes. I think he surprised the doctors with how well he picked up the feeding part of it. He had to be all on nipple feeds before they'd let him come home. The NICU allowed him to take additional bottles gradually. He had to finish 2 before they'd allow him to try 4, and he had to finish 4 before they'd let him try 8.I think he took 2 bottles within just a couple of days of his first attempt. Then, he took 4 and 8 pretty quickly after that. We actually had to wait for him to be weaned of the caffeine - we were worried the caffeine was going to keep him at the NICU. The NICU required that he stay off the caffeine for 5 days before discharge.In the end, though, he had a couple of bradies that bought him an extra few days in the NICU. We ended up being discharged at 36.5 weeks gestation or so.Because we were living so far from home, the doctors and nurses were extra aware of our need for a bit of notice for discharge. My parents had to come down to help us move, so that all had to be coordinated. Once our son started bottle-feeding, we were given a target week of discharge. The week changed a couple of times, but we had plenty of notice. Then, as the discharge date got closer, we had it narrowed to a specific day - Wednesday, April 6th. I remember at rounds that Monday that the doctor mentioned that we were scheduled for discharge Thursday, and I was like, "Wait, what? No - Wednesday!" He agreed, and the day wasn't changed.We had CPR training a few days before discharge and then monitor training the day before discharge. Our social worker and other supporting staff were very helpful getting everything figured out for us. We had to work with a specific monitor company that had facilities both in the state of our NICU and our home state. She coordinated everything.Z also had to pass a car seat test. I remember how exciting it was when we had that done. We requested a car seat check (to check the installation of the car seat in our cars), but that wasn't required. He had his circumcision a few days before discharge and a Synagis shot about a week before discharge (they had to squeeze it in before RSV season ended).I also had to get all of our milk from the freezer during this whole process. We had a deep freezer, which was good, because it was a ton of milk! We did that a day or so before our son's discharge.What were the first few days at home like for you? What helped in those early days? Advice for people nearing discharge? What was it like emotionally?
I remember it being very surreal. I think the first several months were surreal. I was so numb from the NICU experience that I wouldn't even describe it as happiness necessarily. Relief is what I remember most when I look back. I was just SO happy that it was finished. Happy to be home. I remember walking into our apartment (which I hadn't seen in months), and feeling just...strange.
Z came home on the same 3 hour schedule he had at the NICU. He would wake within minutes of his scheduled feeding time. We stuck with it for a few weeks, which I think was a good thing for our sanity. I was transitioning to EBF from pumping + bottles, and, when I finally made the full transition, the schedule just went out the window.
My advice would be to just try to hang in there. Those last couple of weeks are ROUGH. The first days are hardest, especially if you have an early preemie and you aren't even sure the baby is going to make it. The middle just becomes routine. Go to the hospital. Do the feedings. Do kangaroo care. Lather, rinse, repeat. The end is so so hard, though. You know you're so close to the end of the ordeal, so each little bump in the road is just awful.
What are your experiences with discharge? Unfortunately, Jack stayed another 2 weeks in the NICU after Ian was discharged. That was hard, leaving Jack behind but we were thrilled to finally have at least one of our babies home with us. Ian left the hospital around 9pm on a Friday night, so there weren't many people there and it was pretty quick and painless. Jack left around 11am on a Saturday morning, again quick and painless due to prep.
What was the process like at your hospital? Basically, we were given a packet of information we had to go over prior to discharge. They gave us the packet about 3 days prior to Ian's discharge. We also had to demonstrate that we knew how to change diapers, give baths, dress them, swaddle them and feed them. Luckily, we only had to demonstrate once and we got signed off for both boys. We also had to watch an infant CPR video and pass a quiz (I was exempt from this because I'm required by job to be CPR certified anyway, so I just showed my certification card to the staff). A day prior to discharge, the boys were circumcised (we're raising them Jewish, so it was for religious reasons, but we didn't want to circ them out of the NICU for obvious reasons!). They had to be monitored for 24 hours before they'd be released to us. The day we left with them, the nurses performed a carseat test. Luckily we didn't need any special training on any support devices because the boys weren't released with any. They also had to pass a hearing test and they got their first dose of the Hep B vaccine before discharge.
Did you have much warning? With Ian, we had about 3 days notice. Enough time for us to go through all the prep work for discharge. With Jack, we got about 5 minutes notice, lol! Apparently the NICU had called me to tell me that we could take Jack home, but phone was dead and I hadn't noticed. So we found out we were taking him home when we went to visit him. Luckily, they "counted" the discharge prep-work from taking Ian home to Jack's discharge and we'd already had both carseats in the car because we thought we were taking Jack home the next day, so it all went smoothly regardless of our lack of notice.
What were the first few days at home like for you? When Ian came home, it was rough. He wanted to sleep all the time, so we had to wake him up every 2-3 hours to eat. Plus, we had to find the time to go and visit Jack because we didn't want to neglect him. It was definitely an adjustment, since Ian didn't like sleeping in the relative silence of home, but it wasn't too terribly bad. When Jack finally came home, it got harder. We'd gotten used to the relative ease of one baby and it was an adjustment learning how to take care of 2 at a time. But since they didn't have any lingering problems from NICU that we needed to take into consideration, it wasn't as bad as it could have been. I would venture to say (though I don't know for sure) that it was much like taking twins home from the hospital without NICU time.
What helped in those early days? The first few weeks, we were staying with DH's grandparents. It was such a help to have someone else cook and clean and teach me how to take care of the boys. Plus, I was recovering for my c-section, so they were a godsend as far as recovery goes. Most of my family and friends were no where to be found, but having a supportive DH was the greatest thing in the world.
Advice for people nearing discharge? Make sure you have all the supplies you need to care for them on hand. At least enough to get you through the first few weeks. Adjusting to caring for your baby yourself is a tough job so use the NICU time wisely. Stock up on diapers, wipes, bath supplies, meals for you, etc. Anything you might need and forgot about. I know we used Ian's 8 days in NICU with Jack for this since I was on hospital bedrest for 7 weeks prior to their birth, so I had NO TIME to nest before my discharge. Also, if you have anyone who's willing to come and visit you to help, make sure to stock up on hand soap and hand sanitizer. And have them do chores as much as possible rather than baby care.
What was it like emotionally? I felt this huge sense of relief when they came home. Relief that they were healthy, relief that after everything I went through and they went through that I still had 2 babies to mother. I felt torn when we left Jack in NICU and it was really hard for me for those 2 weeks. I felt like I was bonding so much with Ian and not much with Jack because Ian was with me all the time. I hated having them separated. But they don't seem to notice it now, they love being together
I was also elated not to have to go back to the hospital EVER AGAIN after Jack left.
what are your experiences with discharge? We tried not to get too excited about discharge because we had seen our "neighbors" have set backs on discharge days so we didnt want to jump the gun so to speak. When we knew she was getting close we started to prepare but never said "its our last day." We roomed in the night before she was discharged but she couldnt stay in the rooming in room with us because of her MRSA infection so I slept in her room in the recliner. It never felt "real" until we were in the car on the way home the next day. I remember I sat in that recliner holding her all night and all the next day as "discharge" was taking place - It took forever - and I just sat there until the nurse came and took her from me to remove her leads.
What was the process like at your hospital? Normally the parents sleep in a transition room with the baby the night before (or multiple nights for parents whos children have medical issues) we slept in the transition room but she stayed in her own room. Discharge wasnt too difficult - we had some paperwork to go over and sign and then they just kind of disconnected her from her monitors and sent us on our way.
Did you have much warning? Not too much - they told us a few days in advance.
Training? We were lucky to leave without monitors so we had Pharmacy Training, where the hospital pharmacist comes by to make sure you understand how to administer the babies medicines, CPR, baby basics class, and thats about it
Tests? Car seat test, hearing test (we failed the first one) and all her medical tests (Head US, ekg, eeg, heart US, blood work etc.)
What were the first few days at home like for you? surreal - it was so strange to all of a sudden not have monitors or nurses or doctors around. I was soooo scared. I must of checked her breathing a hundred times a day. I thought I knew how to care for her completely having spent 4 months in the NICU - but that first bath alone, first time I had to suction her nose etc. was so scary.
What helped in those early days? Family and friends brought food to freeze while she was still in the NICU - That was a lifesaver. I didnt have time to cook. I also have a very good friend who is a NICU nuse who came over all the time.
Advice for people nearing discharge? Dont let yourself get too excited about a "date" just trust that your baby will go home when she/he is ready.
What was it like emotionally? It was strange - I was nervous and excited but the biggest part for me was actually leaving the hospital - being "wheeled" out. I had trouble with missing that part of a "normal" birth experience. Of course everytime I got into the elevator leaving the hospital a mom would be in there in her wheelchair holding her baby with a million balloons and a cart full of flowers with a bunch of family - I left with a pillow and a breast pump. When they wheeled DD out in her bassinett to our car I was beaming - we didnt have all that fan fare but for me they might as well have been a band and a confetti shower!
(35w1d IUGR baby; feeder/grower in the NICU)
what are your experiences with discharge? What was the process like at your hospital? Did you have much warning? Training? Tests? It was fast. The neo called me Monday morning to tell me the results of her sleep study/reflux test that was run over the weekend (she'd moved into an open air crib upon hitting 4 lbs the previous Friday) and said we could pick her up anytime. I was at work and was like "anytime? do you mean the nurse will tell us when she's released?". I'm sure he thought I was an idiot.
We'd had to watch videos on CPR, shaken baby syndrome and something else prior to discharge (We saw them over the weekend since we knew the open air crib was a good sign). We had brief training on the apena monitor too. Other than that, nothing, not even a car seat test. We came in with the car seat, signed, the docs, and walked out of the hospital. It was kind of odd to be honest.
What were the first few days at home like for you? What helped in those early days? Advice for people nearing discharge? What was it like emotionally? We'd been home with the other baby for 2 weeks by then, so the biggest change was going from sleeping pretty decently with one baby to sleeping not at all with twoWe were told well in advance that once A was taking all his feeds by bottle to expect d/c within a few days (he had to be taking all feeds by mouth for 48hrs with no bradys and no weight loss). We were prepared for things to move fast once he got to that point. Once a d/c date was set we have a hearing test, carseat test, and set up a visit by a homecare nurse to check in and check his weight once he got home.
Once we were home we stuck to the every 3hr diaper change and bottle feeding routine that he was already in since the NICU. The most difficult part was not having all the monitors on him like he did in the NICU.