At our hospital, it was generally considered bad karma to tell parents about a discharge date too far in advance. Most doctors and nurses stuck to the vague "around her due date" answer and we didn't push it because we didn't want our hopes dashed. As it became clear that discharge was close, the neonatal team gave us a target week, then a window of several days. Then one day during rounds we were told "if today's test come back clear, you can take her home the next day." Two days later we left the hospital as a family for the first time.

Here are some other preemie moms' experiences:

What kind of warning did you have before taking your baby home?

• "With DS we knew a week ahead of time, but didn't have a "set" date. With DD we had a weekend."
• "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. "
  
• "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."
• "The NICU staff told us from the beginning that our son would be sent home on/around his due date, but he was actually discharged a few weeks earlier because he was doing so well. We had about 3 days notice that he would likely be able to come home that weekend. Our son had to be breathing on his own (still on oxygen, but no CPAP or ventilator) and eating consistently and gaining weight well without the aid of the gavage tube. My husband wants me to write that we felt rushed, which is true, but we also were relieved that the baby was doing well enough to come home."
• "Not too much - they told us a few days in advance."

We watched many families go through the discharge process before it was our turn. My daughter spent two months in the Level 2 Special Care nursery where she was surrounded by babies who had much shorter stays. We quickly learned to watch for the signs that discharge was nearing. At our hospital every parent was required to take Infant CPR and go through Carseat Education and Installation. Babies had to pass a carseat test and go at least a week without any episodes. Parents who were taking babies home on monitors were sent to special trainings but our hospital has a "if you need a monitor you need to be in the NICU" policy so that was pretty rare. Our baby also had a final head ultrasound, hip ultrasound, and an OCRG as part of her discharge exams.

As with everything else NICU-related, this varies a lot from hospital to hospital. So we asked preemie moms to share their experiences about discharge tests and trainings. Here are their experiences.

What kind of tests, trainings, or evaluations did your NICU require of babies and parents before sending them home?

• "We had to watch a CPR video and then be "quized" by the nurse."
• "We received training on the medical equipment we were sent home with (oxygen concentrator and spare travel tanks and apnea monitor) as well as a course on infant CPR for us and our son's grandparents who babysit frequently."
• "We had the eye test, hearing tests, and echocardiogram (our son has a murmer) in the last few days before discharge. The doctors scheduled all his tests for the same day, which really wore our baby out! I will never forget coming in after his eye test (the last test of the day) and seeing him in his bassinet, completely non-responsive to me (he was breathing and alive, just not happy or wakeable like normal) thinking he seemed like he'd lost the will to live. I would recommend having those tests not all scheduled back to back if you have any say in it."
• "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 that's about it"
• "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."
• "Each baby had to pass a car seat test. And they both had a modified barium swallow shortly before discharge 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."
• "He had a hearing test and car seat test. We sign the okay for the hearing test when he was born and the car seat was brought in within 3 days of him leaving."
• "Car seat test, hearing test (we failed the first one) and all her medical tests (Head US, ekg, EEG, heart US, blood work etc.)"
• "Once a d/c date was set we have a hearing test, car seat test, and set up a visit by a home care nurse to check in and check his weight once he got home."

When I had my son at the end of 30 weeks it was pretty clear that he’d be living at the hospital for a while. I wouldn’t get to feel his skin against mine right away and we certainly wouldn’t be able to breastfeed during his first hour of life.

Enjoying a strip of red pepper .

I’d never heard of baby-led weaning (BLW) before reading about it on TheBump. I’d been planning to make my own baby food before I learned babies didn’t need to start on purees.

It is supposed to be the most wonderful time of the year. That time of year when we all sit down to celebrate our holiday traditions with family and friends. However, when you have a baby in the NICU the last thing you feel is merry. Your life is already upside down, you’ve been cheated of a typical birth experience and now you don’t get to celebrate the holidays in the way you dreamed.

I had made up my mind from the beginning that I wanted to breastfeed. I wasn't "against" formula, and if it didn't work out that was ok too. But I was going to give it a try. When I went in for my c-section my nurse was aware of my desire to breastfeed, and she made sure that I had a pump waiting at my bedside the minute I was back in my room.

Every hospital has a slightly different discharge process. Some require all parents to "room in" or spend the night caring for the baby in the hospital before coming home. Others require classes for parents and test for babies. We asked moms to share their experiences to help give you some perspective on what you might expect. Remember that these are just some people's experiences and your hospital may have a different approach!

What was the process like?

• "At our hospital we had to "room in" and stay a night (or two) prior to discharge. We had to be trained on the O2 and on the monitor. We also had to do CPR training...<--- This was at the hospital DS was discharged from. The hospital where DD was transferred and later discharged, we also had to watch videos on SIDS, a G-Tube training video and a few other "caring for preemie" videos. We also had to have pump training for DD's feeding tube and training on how to care for her G-Tube."

• "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)"

• "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."

• "We roomed in the night before our son was discharged. We spent the night in a private room in the NICU that was designed to look like a hotel room with hospital equipment hookups. It allowed us to try up to a full day of "on-our-own" baby care with nurses just steps away if they were needed. We did wind up needing some help when our monitor was malfunctioning, but otherwise, we were pretty capable of taking care of his needs after weeks of doing cares in the NICU."

• "Normally the parents sleep in a transition room with the baby the night before (or multiple nights for parents whose children have medical issues) we slept in the transition room but she stayed in her own room. Discharge wasn't 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."

• "At our hospital parents only "room in" under some circumstances. Any baby going home with monitors, oxygen, or other equipment has to room in so the parents can make sure they know how to do everything. Doctors often also made parents room in if they did not feel like the parents knew how to care for their preemie. This was often parents who had not been very present during their child's NICU stay. Because I basically lived at my baby's bedside and she did not come home on a monitor, we did not have to room in. We just had to make it through a discharge exam and be released by several teams. Then the nurses packed us up and walked us out to the car!"
  

The last days or weeks in the NICU are often described as some of the hardest. When your baby is SO close to coming home with you, every little set back seems devastating. Its easy to get your hopes up and then see them go crashing down again with a brady spell or failure to finish a bottle feed.

When my daughter was in the NICU, we didn't know when to expect her to come home. One doctor got our hopes up with "she'll be home for Easter!" then "Mother's Day!" We were elated each time but quickly learned that we couldn't get our hopes up that much. So we waited. And waited. It felt like forever. But finally she came home, about 2 weeks before her due date.

The whole time we wondered what the discharge process would be like. Here are some preemie mom's experiences with the discharge process to give you some perspective. Keep in mind that every baby, every doctor, and every hospital will have its own story so these may or may not be what you experience.

What was discharge like for you?

• "With the twins they came home at two separate 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."

• "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."

• "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."

• "We tried not to get too excited about discharge because we had seen our "neighbors" have set backs on discharge days so we didn't 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 couldn't 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."

• "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 had our discharge date changed three times in the course of week. First they wanted to get our baby's 2 months shot done before she was released, then we had more test to run, another ultrasound...it seemed like it would never end. Even on the day she was scheduled to come home we ended up waiting half the day for pulmonary results to find out if we were going home with a monitor or O2 after not being on it for over a month. But we made it home after everything!
  

My son was born at 26 weeks, and I EPed for the 70 days he was in the NICU. When he came home at about 36 weeks gestational age, I was determined to breastfeed. A couple things helped with me.

1) I used a special needs feeder by Medela (the sell them on Amazon) to help teach him proper sucking techniques. It only allows milk to flow when the baby actually sucks (unlike a bottle that will constantly drip), so I think it helped "train" him to breastfeed. Here’s the link, but you can buy them cheaper than this.

2) I used ultra-slow flow nipples after I went back to work. Our NICU did a study to understand which nipples are the slowest flow, and they figured out it was the Similac Slow Flow nipples. They're sold as disposable, but you can wash and reuse them. We bought a case of 50, and we still have a bunch left. Here’s the link.

3) I used a nipple shield. That helped my son get milk when he was very tiny. After awhile, though, I felt like it was actually hindering his ability to get milk. I had to use a very small size for his tiny milk, and it hurt my nipple. I also think it sort of constricted the flow.

I just gradually increased the number of feedings I did by breast. My son was in the NICU so long that he came home on a pretty regimented 3-hour schedule. He'd take bottles at 3, 6, 9, and 12. the nursing didn't replace the bottles 1:1 (I usually had to nurse more often than I would have had to give bottles), so I'd allocate time periods where I would only nurse and not give bottles. So, at first, I'd nurse between 12pm and 3pm every day (replacing 2 bottles). Then I'd extend it to 6pm. Then 9pm. By that point, he was strong enough where he was nursing well, so we just went cold turkey to nursing, and we never looked back.

My son is still nursing at 10.5 months, and he's always gotten breastmilk. I went back to pumping when I went back to work, but it sure was nice to have a little while where we could just nurse on demand.

The likelihood of Placenta Previa persisting until term is something like 3%. I was pretty convinced it would resolve itself. None the less, I read up. I did my homework. I knew what the consequences could be. So when I woke up on April 29^th – just 35 weeks and 4 days – bleeding, I knew we needed to head to the hospital. I had a feeling this baby was coming. We were lucky. They held out a few days. They wanted 36 weeks. As I spent my weekend in hospital, I spent my time googling…how bad could a 36 weeker be? It wasn’t that premature after all.

Summer as going very well and I was enjoying being pregnant (for the most part). I was lucky and was able to take vacation from work 1 week after the 4^th of July so I had a nice relaxing two weeks off from work. The first day following vacation, I returned to work (veterinary technician). I had noticed around 10 am that morning that my lower back had to started to ache a bit. I figured this was the beginning of aching, tired portion of 3^rd tri and didn’t think too much about it. I took some Tylenol and went on about my day. Around 11:30am, I noticed that the Tylenol wasn’t helping much so I tried sitting/standing different positions to no avail. I called my OB at this point to see if they had any suggestions or if there was anything else that I could take. While talking to the receptionist, she put me on hold and came back a few minutes later and said that my doctor recommended that I come in and get checked to make sure I wasn’t dehydrated. So, I went on my lunch break (her office is right across the street from where I worked) thinking it would be a quick appointment. I showed up, they put a fetal monitor on me and we came to find out that I was having contractions every 2-3 minutes. Next thing I know, I’m hooked up to an IV and having my cervix checked with luckily no change. Andy came from work and we sat at the hospital for about 8 hours. During that 8 hour hospital visit (which was my first visit EVER to a hospital), they gave me two bags of fluids in about an hours time (man did I have to pee!) and terbutaline to stop the contractions. The terb. wasn’t too horrible, it did make my heart race a bit (it could have also been the surreal situation that we were in at the time, we were both slightly nervous about what was happening). This is one of those situations in which my personality really shows through…I can honestly say, even though we were sitting in the hospital, I wasn’t too worried. I didn’t really know at this point that this was just the beginning. I just thought it was a fluke.

When the weather outside turns frightful and we tuck ourselves inside near the heat - don't forget your humidifier! These will keep your LO's boogers loose and clear so you can both breathe easier.

Crane makes a whole bunch of cute animals - or, this tuff dragon! raWr!

As a preemie mama, one of the things that has plagued me over the last year was my inability to carry my daughter to term.  I developed severe preeclampsia and IUGR, and had to deliver at 29 weeks 2 days.  4 months later, we received another blow when Judith was officially diagnosed with a life-shortening, chronic, and potentially life-threatening lung disease: cystic fibrosis.  My husband and I knew from the start of Judith’s life that we wanted to do what was best for her, much like any parent would.  Part of this plan included a crucial element: vaccines.
Since preemies can be prone to complications from many different diseases, vaccines are an important part of their care.  It’s not just the standard vaccines that all children should get (think Hepatitis, polio, MMR, etc.) - it also includes critical vaccines against the flu, and against RSV.  Just like with adult vaccines against the flu, children can still get the flu (and yes, even RSV) even though they received the shot; the crucial element is the vaccine will prevent the virus from growing, and will help lessen the severity of the virus.  In some cases, it could make a difference in treatment, and could help keep the little one from landing back in the hospital (granted, there are exceptions to everything).  It’s one more step preemie parents can take to protect their child/children.

Many pediatricians will vaccinate a preemie based off of their actual age.  I remember having this discussion with our pediatrician and our neonatologists; they explained to me that they vaccinate preemies this way to help give their immune systems the protection it needs from these harmful diseases.  After receiving that information, I had a decision to make with my husband about how to approach vaccinating Judith: did we want to follow the standard vaccine schedule, or did we want to follow a delayed schedule?  I know a lot of preemie parents who choose/chose to follow a delayed schedule, and work with their pediatrician to set something up.  I also know a lot of preemie parents who follow the standard schedule, and I know many preemie parents who mostly follow the standard schedule but will delay a couple vaccines.  Personally, we follow the standard schedule with modifications: our pediatrician will not overload Judith with too many vaccines at once, but she will receive the vaccines within the recommended time frame.  That’s just our decision though - every preemie parent is different, and they need to follow a schedule they are comfortable with.

I know this isn’t a lot of information; the best source of information is your pediatrician, and they very well may recommend something different than the information I received.  Work with your preemie’s doctor, and figure out what will work best for your situation, and what you would be comfortable with.  Together, you and your doctor can help give your little miracle the extra protection they need!