Monday, December 19, 2011

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!
Thursday, December 15, 2011


From the start, my pregnancy was a worrisome one. I had a miscarriage prior to finding out I was pregnant, so I was on pins and needles worried that I may miscarry again. I got past the 1st trimester and all seemed well. That was until I found out my AFP came back with an increased risk for Down’s Syndrome. So, DH and I had to go to a hospital an hour away and have a Leve II ultrasound and an amniocentesis and meet with a Genetic Counselor. Everything ended up being perfectly normal and we got the definite confirmation that she was a girl.

Throughout the 2nd trimester, I started to gradually develop more and more swelling in my feet and hands. I couldn’t wear my normal shoes or wedding ring by the time I hit 23 weeks. I was assured this was normal. I was already on blood pressure medication for chronic hypertension, so I knew pre-eclampsia was a possibility- it was always in the back of my mind. Around 27 weeks, my blood pressure started to increase a little and the swelling was a little worse, so my doctor did a 24 hour urine to check for protein. It came back fine. So, I was told not to worry.

At 28 weeks, I had more and more swelling and my blood pressure was up and I just felt bad. So, I went in and they checked my BP and urine for protein. It was a little elevated and my protein was 1+, so again I was told not to worry and just take it easy. They did an NST and everything was fine also. That night, I checked my BP at home and it was around 180/100 even after lying on my left side for over an hour. So, I called the dr on call and she told me to take another BP pill and go to bed and come see her in the morning. So, I did. That morning they did an NST, checked my BP (high) and checked my urine. She told me they were going to take me out of work and put me on bed rest. I was definitely okay with this. The next thing I knew, the nurse comes into the room and says my urine showed 4+ protein (on the dip, which is as high as it goes). So, things immediately changed. She said she was sending me to the hospital and that “28 week babies do just fine”. I was in shock. 28 week babies? What? I’m having my baby?!


So, I arrive at L&D without my husband. He had worked 3rd shift and was at home sleeping. I didn’t think there was any reason to wake him for the appointment. So, on my way, I call him and tell him to meet me at the hospital. So, I arrive alone, scared to death and they are getting me set up in my room on the monitors and such. It was like I wasn’t even there. This wasn’t happening. They had me start collecting a 24 hour urine and gave me my first round of steroids for her lungs. They had trouble keeping her in the monitor because she was so small, she could move around a lot. The doctor tells me I can’t have TV, no lights, no cell phones, only 2 visitors at a time and I can’t eat or drink anything. Talk about torture. I wished I had eaten that day but I went straight to the doctors first thing that morning. I remember as they were hooking everything up, I just looked down at my growing belly, with my sweet baby girl inside. I knew that I would probably not be leaving that hospital with her still inside it. I just didn’t know how soon that would be. It was so wonderful hearing her little heartbeat on the monitor. It was such a reassurance for me. In the meantime, the ultrasound tech came in to measure the baby and check to see if she was “practicing breathing”. She said she was roughly 3 pounds and she was practicing breathing. She had plenty of fluid and everything looked fine.

So, DH finally gets there and we wait… the next day comes and my 24 hour urine results come back and it was 1900. This means I’m not going anywhere. The doctor comes in and says I have severe pre-eclampsia. I have to have my blood drawn 3 times a day to make sure things aren’t getting worse.
The next couple of days pass and were pure hell. Some days I could eat, some days they wouldn’t let me. I had to beg them to let me shower. They were so afraid that my blood pressure would get too high and I would have a seizure, I guess. One day they didn’t even let me up to go to the bathroom. I had to use a bed pan. How embarrassing.

On Easter Sunday, I had a terrible head ache. I couldn’t keep any food down and I was mad because they were actually letting me eat. My baby shower was the day before and my family had brought some goodies for me to eat since I wasn’t able to attend. DH had to open the gifts in my place. My headache was terrible and I was seeing spots DH had gone to work because everything seemed pretty stable as far as blood work. The doctor came in to check on me after the ultrasound tech did another ultrasound. I guess they noticed the baby was having a little more trouble than before and since my headache was so bad and I was vomiting, she said to me “We are going to deliver you within the next 30 minutes” DD was breech, so I knew it would be a c-section. So, someone called DH and told him to hurry back. They then started the mag sulfate to prevent seizures and inserted a foley catheter. (which I was NOT happy about). They then wheeled me to the OR where I met DH coming off the elevator. He quickly changed and they took me into the OR to do the spinal block and set up. A little while later, DH came back in. All I remember was being SO sick. I kept throwing up. It was terrible. I felt a little pressure but nothing too significant. After a few minutes, I heard the most beautiful little cry. She sounded like a little kitten crying. I didn’t think I would hear her cry- I wasn’t sure how her lungs would be. I was SO relieved to hear that beautiful sound. They quickly held her up for me to see. She was so beautiful and so tiny. They took her over to the NICU team to be weighed and examined. She was 2 pounds, 11 ounces and 15 inches long. She was breathing on her own. All seemed right with the world. She was going to be okay.
I couldn’t see her again for 24 hours because of the mag sulfate, I couldn’t get out of bed. I quickly started pumping though as soon as they would let me. I was determined to get milk for her. After the longest 24 hours of my life, I was getting ready to be wheeled into the NICU when they told me we couldn’t come in. There was a complication and the doctor would be in to see me in a minute. My heart sunk. I knew that something was wrong with my baby. Was I going to lose her before I even got a chance to hold her? It seemed like forever until the doctor came in to see us. He said that Reagan had popped right lung. It was called a pneumothorax. He said this was rare but it happens. He said most likely, the other one will do the same. So, they had to insert a chest tube and put her on a vent. I was able to go see her after that. She was the smallest, most fragile little person I had ever seen. She was hooked up to so many things and she seemed to uncomfortable. My only thought was that she would have been more comfortable and safe inside of me. I broke down. The next say, the other lung collapsed but it wasn’t nearly as bad as the last one. They never actually told me, but I think she crashed the first time. They wouldn’t let ANYONE in the NICU at that time and some of the nurses told me they were crying. They never actually told me that though-just that it was bad.
As the days passed, she slowly got the chest tubes taken out and she was moved to room air. I finally got to hold her on day 3, as soon as the chest tubes were removed. All was right with the world. I had my baby girl in my arms. She was SO tiny and fragile.



Time passed and she continued to grow and finally graduated to the level II NICU. She was then just a feeder/grower. She came home on Father’s Day, June 19th at 37 weeks gestation after an 8 week NICU stay.
It’s hard to believe it has almost been 8 months. She is a perfect, happy little baby. She has thrived meeting all of her milestones. She has some reflux issues but other than that she is perfectly healthy. She is truly living proof that miracles DO happen. She is my little hero.
 
Grayson had a lot of obstacles from conception. He is my third child and since both of my other two boys were preterm and tempted very early preterm labor, my physician decided to give me the progesterone shots to "prevent" him from making an entrance too soon. I am a single mother and so between work and stress from Grayson's father it was a stressful pregnancy.
At about 18 weeks I noticed I had started to feel some contractions but the doctor kept telling me that while early they were Braxton Hicks contractions. We just kept chugging along with weekly injections and check ups for my blood pressure until the day of 09/10/11; Grayson's very early birthday. He wasn't susposed to be here until November 5th and I kept telling myself this fact over and over but it wasn't changing Grayson's plans. It was about 12:30 when my water broke while I was taking a nap; I was exactly 32 weeks. I woke up and realized what had happend, called my mom and she kept asking "are you sure your water just broke?!" I told her yes to come up and get the boys because in my mind I was driving myself to the hosptial! I decided while I was waiting for her to shower and kept thinking that I really needed to shave my legs! By the time she got there I still wasn't contracting too much and felt pretty good and CALM! She had my dad take the boys and she and I headed for the hosptial.

Once we got there and explained what was happening things started to speed up a little bit. I wasn't dialted yet but 75% effaced. The doctor came that was on call that weekend told me that he was going to try to stop the contractions what were now 4 minutes apart (I wasn't really feeling them yet). After two failed attempts at stopping the contractions it was determined that I couldn't stay at the hosptial I was in because there was no NICU. The closest NICU was an hour away and there were NO ambulances to take me. That weekend there was a motorcycyle rally in my town and in the larger city where I needed to go was a college football game. Both events were taking up all the ambulances until later that evening which I would not last that long. The only other option was a Medflight to the larger city. 

At about 2:30pm I was checked again and still not dialted but fully effaced. The contractions were getting stronger and they couldn't give me an epidural because of the helicopter ride I was about to have and I wasn't dialted yet. By 4:30 they checked me again because the helicopter had arrived and I was a 6-7. BIG JUMP! By now I was in a lot of pain and I was given some stardoyl to help take the edge off. It really didn't help at all. I am alergic to morphine and Demerol so I could not have any other pain meds. They get me in the helicopter and we start our 20 minute flight to the new hospital. My Medflight nurse was Lyssy. I loved her! She was amazing and supportive and kept reassuring me it was going to be ok. But I as still CALM, other than the pain of the contractions,I was so go with the flow which is not like me at all! By the time I got to the hosptial and check into the delivery room and such it was approaching 5:30pm. The Dr that would deliver me came in and said he wanted to know exactly what we were looking at as far as baby size and when he looked he was right on what he thought and what my growth ultrasound had shown not two days before--Approximatley 3lbs. By the time he checked me I was a 7-8 and he promised that I was still going to get the epidural. About 15 minutes later he checked again because there started to be a LOT of pressure and he said "oops no time for an epidural now hes coming!"
Grayson was born at 6:57pm on 09/10/2011 weighing in at 3lbs 11 oz and 16inches long. He scored 9s on both APGAR tests. He was taken to the NICU where he was on the nasal cannual for about two days and then was just "in" as a grower and a feeder. The nurses kept telling me how strong he was that he just didn't want to be in there and was jumping hurdles like nobodys business! He got to come home 3 weeks later and is doing amazingly well now. He's my little miracle!!

Saturday, December 10, 2011
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.
Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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