Friday, December 30, 2011

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."
Thursday, December 29, 2011
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.

What happens when a neonatal hurricane whisks your baby out of an OR and it is hours before you know what he looks like? Then, on top of that, it might be days or even weeks until you can touch your little one.

How can you be an attached parent when you’re separate?

Parenting a preemie was the section you probably skipped over when reading about having your baby. I know I did. Those chapters have come to haunt me as well as any other section of a book that references what to do just after birth.

There are things you can do while living separately to aid in AP. We practiced kangaroo care every day to get as much skin to skin contact as possible. I slept with his hats or carried them around so he’d have my scent with him. I read him books and had discussions with him and also kept long periods of silence.

We live in the city without a car so I’d been planning on skipping the stroller and wearing him exclusively. I was really excited to find out that BabyHawk carriers are not only preemie-approved but are also used by a NICU in Florida! It felt good to support such a supportive company. Nine months later (and seven adjusted) we're still BW'ing and moving onto a sturdy German wrap.

It’s really hard to adjust to a preemie plan when you had envisioned something so different. That’s how it is for all of us, whether AP or otherwise, but I'd like to think that the extra time we spent together in NICU only strengthened our bond.








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.

You mean, I can just give them food?

That sounded much easier to me and my husband. “Hey, did you know you don’t have to give a baby mushy food?” I asked. “No. Then, why would we?”

We wouldn’t. Instead we’re taking the BLW-route which is a different path to the same result.

The method has existed for a long time, but the term is new. It was coined by Gill Rapley who wrote Baby-led Weaning as well as an accompanying cookbook.

When deciding to BLW a preemie go by adjusted age and read your baby’s cues. I’ve felt that using this method has gotten me even further in tune with my son.

My blog can be found at Urban Flowerpot where I talk about raising Tristan and other fun things.

For more information on BLW I suggest reading the book and finding the BLW group on FB.

You can also visit these sites:

http://www.rapleyweaning.com/
And, why not watch this sweet video made by Housewife Confidential?
Sunday, December 25, 2011
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.


When I was pregnant with baby, my due date being November 29, we were thrilled that by Christmas we would have a new baby home. All that changed when Isabella was born on August 18 and didn’t come home until January 3rd. We celebrated our first Halloween, Thanksgiving, Christmas and New Years in the NICU.

It is my hope that you find comfort and joy in my experience celebrating the holidays with a preemie in the NICU.

The nurses were wonderful, they bought Isabella a red velvet Christmas dress. They decorated the NICU and had a holiday party. I put up a little people nativity scene in her pod. I bought those gel cling-to-the-window Christmas decorations and put them on her isolette.
The best Christmas present was getting into an open crib!


I played Christmas music on my drive to the hospital, drank warm chocolate milk (reminds me of Christmas time). My friend dropped off some tamales (traditional Mexican Christmas dish).

What helped the most was not ignoring that this was our first Christmas. We didn't treat it like any other day. We spent the day together, we read Christmas books, and we took family pictures dressed in our holiday best. We bought a little Santa hat for baby and 1st Christmas ornaments. We also had our Christmas dinner in a nice restaurant near the hospital.
Just because you are in the NICU doesn't mean you and baby don’t deserve to celebrate the holidays. Dress up your baby with a cute holiday hat. Buy blankets with a holiday motif to swaddle your baby or cover their mattress. If you want to skip that holiday party, DO IT! I remember how awkward it was to be around people at birthday parties, church and even family when baby was in the hospital.

We are now celebrating our first Christmas “at home”. We decorated our tree with pink and green ornaments in honor of Isabella, practically all the gifts under the tree are hers, and my family is visiting. I look back at our first Christmas and while it was different, honestly, that's part of our life story. I'd like to think we are more grateful people because of it. Happy holidays!


Tuesday, December 20, 2011
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.


The first time I pumped I couldn't feel a thing. The second time I screamed in pain... HOLY HECK did it hurt! My nurse came in and calmly told me I might consider turning the pump settings down (whoops), that helped but man did it hurt the first week or so. Then of course comes the joy of cracked nipples. I was pumping every 3 hours around the clock, at home & at the NICU.


Our NICU didn't have a very comfy pumping room and often I was more comfortable sitting by the twins bedside pumping. I also found I got more milk then or anytime after Kangaroo care. It didn't take long before the nurses told me they didn't have room for more milk, so I started stocking my freezer at home. For the longest time the twins took less then an ounce each, so I was making more then they needed (a blessing in disguise of course). At the same time I was beginning to wear down emotionally and mentally. One of our nurses then suggested that I try only pumping every 4 hours at night so I could get some rest, and once a week I'd take a night off and sleep the whole night thru. This worked for about a month and a half... then I noticed my supply was starting to tank a little. Meanwhile in the NICU they were fortifing the twins BM with Neosure for extra calories and we were soooo close to getting to actually trying to breastfeed. I'll never forget the day they said we could start "non nutrative sucking". Blake got to try first, it wasn't going well, they gave me a nipple shield, it went a little better. A few days later he was back on CPAP and we had to stop. A week later I got one shot with Addison, she bit down hard.


The LC's were just about driving me crazy, bless their hearts. My supply continued to drop no matter how many power pumps or anything else I tried. At this point I was getting about an ounce to two ounces each pump. The twins were taking an ounce a peice. I started trying to track when I got the most milk, and was considering supplements to increase supply. Then one of the LC's asked me something about my medical history and my PCOS came up...she then explained that PCOS also had a hand in my supply and that a lot of woman with PCOS have supply issues and do not benefit from supplements. Plus I'll be really selfishly honest, the idea of smelling like maple syrup (from Fenergreek) was not appealing to me in the least. My OB said he didn't reccomend any supplements either.


After much thought and debating it to the ground in my head, I made the decision to cut back and ween off the pump in effort to quit BF. Within days of decreasing pumping sessions my supply diminished. In a weeks time I kid you not I was dryed up. I knew at this point that they were past the most critical stage and that they tolerated formula, because they were already getting half and half. And any attempt at BFing was now a ways off again...


I still have days where I wish it would have worked out differently and if we ever have anymore children I will try again. I EPed for 2 1/2 months exactly and I was never so glad to put the pump away. It was the right choice for us all at that moment.
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.


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 29th – 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.

Respiratory problems…that was the brunt of what we could expect, if anything. So it wasn’t any surprise when they pulled our baby girl Maura out that she needed to be resuscitated. She didn’t cry. It took a minute or so. It seemed more like five. Overall, Maura was pretty good. They took her to the NICU just to keep an eye on her, but after a mere 4 hours, they brought her to me, and I snuggled down and tried to nurse.

For two days, things were normal. I was recovering from my cesarean section, and Maura was coming along fine. After being in limbo for a few days, it was quite a relief that there weren’t any other issues. I was ready to get out of there. I wanted home. The doctors all gave the OK for us to head out with one last stipulation – the car seat study. While Maura weighed in at 6 pounds 5 ounces, she was still a preemie by definition. Hospital policy required all preemies to take the car seat study. So I nursed Maura and changed her. She scrunched up her face as if to cry, but then settled back down. They took her off to be tested.

Joe and I waited for her, packing up our things. I took a short video of our hospital room as we were the first to use it in the new wing. Joe asked if he should head to the car.

“Just wait,” I’d said. After having to leave our son due to his bilirubin levels when he was born, I was just a little superstitious. 

When her test was over, the neonatologist came to see us. Maura had failed. She would not be able to go home. She had an “apnic” event. I felt as if I was being swallowed down a hole. This couldn’t be happening to me. Everything was fine. She was fine. They were going to keep her overnight for observation in the NICU. 

For two days, we watched Maura slide downhill. These apnic events became seizures. She was stripped of her newborn clothes, hooked up to monitors, and stuck with an IV with three antibiotics and phenobarbital. I remember the first time we walked out of the NICU. My husband cried. I promised him it wasn’t for long. This would all be a blur. Little did I know. 


On Friday morning, I walked in to see her. She wasn’t in an incubator anymore. She was holding her own, swaddled, sleeping. Things were looking up, or so I thought. The neonatologist came to talk to us. She said that if ever there was a time she wanted to transfer a baby to a better hospital, now was it. She mentioned Childrens Hospital in Philadelphia. It was all happening so fast. They were taking my baby…to another state…to another hospital…and she wasn’t coming home. 

Maura was transferred that afternoon to CHOP. It was such a foreign place at the time. Directions to get there, where to park, where the NICU was…we had no idea we’d soon call CHOP home for quite some time. 

Everyone knows NICU babies have rules. These rules are given to them by the doctors. They have to be off C-Pap before they can nurse, they have to breath on their own, hold their own core temperature, all those rules. Some babies are feeder-growers – just gaining weight and growing in womb like environments. Maura was a feeder-grower most of the time. I liked to call her “Regular Baby Maura”. I’d arrive at the NICU with my milk cooler at around 8 in the morning. We’d spent our days snuggling. Then there was the darkside – the seizures. 

You see, Maura has epilepsy. By definition, it means two or more unprovoked seizures. They thought it would pass. It wasn’t uncommon. They called it benign neonatal seizures. It was commonly controlled with phenobarbital so of course, this was the first course of treatment. Maura was resistant. They added Keppra which helped. Maura’s seizures stopped, and they sent her home after 17 days. We were kidding ourselves to think she was ready. She was so tiny in her carseat. She weighed less than 6 pounds at the time. She was still so helpless.

Three days later, she was seizing again. There were three at home. On the third one – when she turned blue – cyanotic – we brought her back. I felt so embarrassed. I couldn’t take care of my baby. I thought she was ready. She was far from it. There were several more that night. They were by no means under control. There were new rules. She wasn’t your run of the mill preemie. She had something to prove. Maura could have no more than 3 seizures a day (because after all, she was going to have them) and she couldn’t turn blue and need c-pap.

Every night before I went to bed, I’d call the NICU. The nurses were always so nice. They’d share every detail and wish me a good night. She often had good evenings – time usually not spent with us while we spent it at home with our toddler. It was the mornings that we’d wait with baited breath. I never called in the morning. It was motivation to get up and moving faster….to drive the 45 minutes to CHOP…to walk up to the NICU…to get her overnight update. It was usually then that I’d be let down. Her seizures liked to strike at night. I’d run the numbers in my head – Maura was far from coming home. 

Maura continued to baffle the specialists. Why were her seizures happening? Why hadn’t they passed on? What would they need to do to help her? They continued to dig deeper for answers. At one point, they even sent the geneticists to see us – to research incredibly rare (like less than 5 cases world wide!) disorders. It was quite scary at times.

One of the neurologists that had stopped in to see Maura in passing had mentioned Topamax. It was another seizure medication. Little did they know how much I’d research it. It was a different kind of drug. It didn’t react with the inhibitory reactors of the brain, it reacted with the excitatory reactors – a different approach – an option that I pushed for Maura for days before they finally gave the OK. It wasn’t approved for use in newborns, and I’d need to sign off on it. Maura’s seizures stopped nearly instantaneously. It was our miracle drug. 

I started calling the NICU in the morning. I found the faith I needed to believe this was it. And every morning, I reveled in the news. Maura was seizure free. The meds were working. Maura was given a new rule: If she could stay seizure free for five days, they would send her home. I knew this was it. 

After 35 days, Maura was released on three anti-seizure medications. 35 of the longest days of my life. I never thought that a 36 weeker would spend 35 days in the NICU. She had other plans for us. 


Maura has been seizure free for just more than 3 months. Do the math – as you can see, there were other seizures at home through the summer. Her medication levels were adjusted easily by phone and email, and we never brought her back to the NICU except to visit, of course! She is currently down to two anti-seizure medications, as we look to wean off of one in a few months to narrow her to just one medication. While 6 weeks in the NICU sleeping caused quite a bit of low tone, Maura is thriving with the help of Early Intervention and a lot of love at home.
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 4th 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 3rd 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.

I was sent home from the hospital and told to take it easy until I see my OB. When I saw my OB later that week, she put me on modified bed rest and told me to stay off of my feet and to watch for contractions of 6 or more in an hour. If they came back, I was to return to the hospital.
 
Saturday rolled around and I was watching TV when I noticed I was having contractions again (now I knew what they felt like) and was having about 8 in the hour that I had counted. So, back to the hospital we went. This visit, started like the last, the fluids, the terbualine but the contractions wouldn’t stop. I was kept over night since the Terb. wasn’t working and they had to give me mag sulfate. Magnesium Sulfate is a nasty drug. It is very effective in stopping contractions but it makes you feel horrible. To quote drugs.com: “The adverse effects of parenterally (IV) administered magnesium usually are the result of magnesium intoxication. These include flushing, sweating, hypotension, depressed reflexes, flaccid paralysis, hypothermia, circulatory collapse, cardiac and central nervous system depression proceeding to respiratory paralysis.” Great stuff, huh? I felt hot and very sick to my stomach. I had to be catheterized (urinary) because I wasn’t allowed to walk.
 
The next day was worse because it left me with a horrible headache. The urinary catheter was the WORST part of my whole pregnancy experience. I’ve never felt so much pain or so dehumanized.
That evening while in the hospital, my OB was on call and she came in to talk to me. I totally lost it that point and ended up balling on her shoulders while she told me everything was going to be ok. They checked me and my cervix was thinned to 1.8cm when it should have been around 3.8-4cm. The next morning I was sent home on strict bed rest and I was to have a cervical U/S on Tuesday. Tuesday came and I had my cervix checked. I was 1 cm dilated. I hadn’t had any contractions since Saturday so, strict bedrest was the plan.
 
In the same evening that I had the cervical ultrasound, I got up to make hamburger helper (figuring it was just a matter of throwing some hamburger in a pan). I made dinner and Andy came home. After dinner, I got up to go to the bathroom and I felt a warm small trickle. I honestly thought I just tinkled a little bit. I decided to go to the bathroom to empty my apparently over flowing bladder and I got a shower. While in the shower, I felt that same small trickle again. I got out, called for Andy and sat on the toilet. As soon as he came in, I trickled again and he heard it. Then we knew. My water had broken.
 
In a flurry, we jumped in the car and were on our way to the hospital. It didn’t really sink in until I walked up to the desk in the ER and had to tell the lady at the desk what happened. Next thing I know, I was in a wheel chair going up to L&D.
 
Again, like the previous trips, I was put on an IV, fetal monitor and given Mag Sulfate (here we go). The next day, I spoke with my OB. The hospital that we were currently at had two issues. The first issue was that their NICU was completely full and second, it was only a level II NICU. We decided that it was best that I get moved to Riverside in case I delivered sooner rather than later so that the baby wouldn’t have to be moved after he was born. I was transferred to Riverside via ambulance. It is very strange to feel so helpless.
 
From then on, I sat in the hospital for 5 days on every antibiotic known to man trying to keep the baby cooking. Sitting in the hospital was horrible. I wasn’t allowed to get out of bed, I was being checked every hour, and it was very lonely. Andy came to visit and stayed with me as much as possible, but hospitals are very lonely places. I was also poked a million times (I had 9 different IVs because my veins are so bad, plus the heparin shots in my legs, the steroid shots for Cam’s lungs, etc). Our goal was to make it to at least 32 weeks.

The day I went into labor, one of the doctors I worked with stopped by to bring me some goodies and to visit. While she was there, it happened to be time to be put on the fetal monitor. We chatted and were interrupted by the nurse coming in…The nurse said that my heart rate was elevated and she asked if I was ok. I felt fine. Then she told me I was having contractions again (which were off and on during my hospital stay anyway). They checked my cervix…I was at 2cm. It looked like I was officially going into labor and they wouldn’t stop it this time. I was taken from the high risk floor and moved to L&D.
 
Our birth plan was to do things naturally. I wasn’t officially sure as to how this would work with Cameron being a preemie. I wanted as little intervention as possible. I was already hooked up to an IV so not having one was out of the question. We had my dad and stepmom in the room, Andy’s mom was on her way up from Cincinnati so, it would be a while before she arrived.
 
I was able to labor for 9.5 hours med-free. I think I did pretty well seeing how we didn’t get to make it to our scheduled birth classes. I think that having my family in the room with me was a bit distracting. The labor was also made more difficult due to the nurse I had. She was not nice at all and I really should have asked for a new one. My dad at one point wanted to tell her off (adding to my stress). She kept asking me if I wanted an epidural and at one point asked me why I didn’t want one. What did it matter? It was my choice. I was checked at the 9.5hour mark and was still only at 2cm. My contractions during that time were hitting 97% on the monitor and I was in a lot of pain. Since I wasn’t progressing and Cam had begun to become slightly distressed (heart rate decelerating during contractions) they started me on Pitocin. At that that my contractions were no longer bearable so I asked for the epidural. I can imagine that nasty things my nurse was probably saying to other people after I finally gave in…. As for the epidural itself, what a BIG difference! After the epi, my dad said I was the happiest person he’s ever seen in labor (weird?). I was able to rest and a few short hours later, I was at 10! (I got very lucky, a Cesarean was the last thing I wanted). My epi didn’t take as well as they do with most so I was still able to feel the urge to pee (at which the nurse didn’t believe me at first) and also felt Cam move down (hard to explain the feeling). I told the nurse what I felt and she checked me, his head was right there!
 
 
 
The doctors had me deliver Cameron in a surgery suite just in case things got difficult. It took a total of 4 pushes and he was out! He was 2lbs 15oz and 15 1/2in long (gestation 30weeks 1 day). He needed just the CPAP to help him breathe (thank you steroid shots) and was taken to the NICU. I didn’t get to hold him after he was born like I had planned, but I did get to touch his little fingers before the NICU team took him away.
 
A lot of what followed was a blur. Cameron was born at 2am and I didn’t get to sleep until about 5am. I was exhausted and starving. I was also VERY thirsty. They wouldn’t let me have much to drink during or after the delivery because they were afraid I would get sick. By the time we got back to my room, I was parched! The nurse finally gave in and let me drink 8oz of juice. Juice had never tasted so sweet! After I pumped for the first time (more about that later) I was finally able to sleep. We slept for about 3 hours and were up at 8am with the nurses checking on me and bringing me food. Shortly thereafter, I went to officially meet Cameron for the first time.  
 
 
 
Cameron stayed in the NICU for 39 and came home the first week of September. He was born July 25th 2010. His due date was October 1st, 2010.
 
 
Thursday, December 8, 2011


My story isn’t on the list of birth stories on this site. Even though my baby is almost 9 months old, I cannot write it out. Every time I try, it reads “The day you were born was supposed to be the happiest day of my life. Instead it was the scariest…but in the end it brought us the most precious tiny baby in the world.” At that point I usually break down crying and have to stop.

Even so, I relive the day she was born in my mind several times a week. The scenes from her birth, the early days in the NICU, and the intense love and fear I felt for my baby seem to play on a constant loop in the back of my mind. I am a preemie mom with Post Traumatic Stress Disorder and Post-partum anxiety (PTSD and PPA). And there are many others like me.

My PTSD and PPA didn’t show up right away. In fact, my daughter was almost 5 months old before I realized I was dealing with more than I could handle on my own. While we were in the NICU, I was so focused on Cora that I couldn’t begin to process my own emotions. I couldn’t even tell you what it was like to recover from my c-section and that was major surgery. I didn’t pay attention to anything going on with me. The first couple months we had her at home, it was all I could do to manage her therapies, appointments, feedings, etc. But once things began to settle, the emotions and the stress of the previous five months came crashing down on me all at once. Unrelenting. And it turned me into a person I didn’t like.

I found that on the days I was supposed to be working, I spent all my time researching preemie issues. Even preemie issues that Cora didn’t have, just so I would know what to look for in case someone missed something. I felt (and sometimes still feel) like all the responsibility for taking care of her, ensuring that she had every need met, and diligently watching for any signs of problems fell squarely and soley on my shoulders. As a result, I couldn’t think about anything else.

I was edgy. Oversensitive. Unable to sleep well even on the rare nights that Cora slept for long stretches. I couldn’t get past the fear that something else was going to happen to her. That I might miss something. That she wouldn’t get everything she needed. And it would be my fault.

I felt like I had already failed her by not being able to maintain the pregnancy. After her birth I was diagnosed with cervical incompetency. Because knowing that my body failed my baby wasn’t enough….it also came with the label “incompetent.” While rationally I know there was nothing I could do, nothing anyone could have done in my case to maintain the pregnancy any longer, I still struggle with that guilt. And the pressure to not ever let my baby down again.

My friendships suffered. My relationships with family suffered. My marriage suffered. My ability to be the kind of mom I want to be suffered too.

So I talked to my OB. I met him the day he delivered my daughter and he has been amazing ever since. He gave me the names of several therapists and I went searching for the right fit.

First I tried a group setting through the hospital I delivered at. That was a bust. The topics were more about PPD (post partum depression) and everyone there had term babies. It was a great group for those women. But not for me. There wasn’t much I could relate to. So I moved on.

Several attempts later, I found the right counselor. I now see her every week and it is helping a lot. She is helping me learn to manage my anxiety and to clear my mind of thoughts that aren’t helpful to me or to Cora. She reminds me that I am a good mom, that I have a healthy baby, and that I will get past this. It is slowly making a difference.

Its important to know that my preemie story isn’t one of the scariest. Cora was a remarkable 27-weeker. She needed limited O2 support, faced few complications, and impressed the doctors at every turn. Compared to many people in our situation, we had an easy ride. That didn’t make it any easier for my emotions. I still don’t have it all figured out. There are good days and bad days. I find that when I get more sleep, get to exercise, and eat well things go better. Of course there are many days when those things aren’t possible.

But when I feel myself sinking into a pattern of anxiety or reliving the events of Cora’s birth, I remind myself “This is not helping my baby. This is not helping me. There are more important things to focus on. Look at that healthy, beautiful, strong little miracle and focus on her instead of reliving the trauma of the past.” Sometimes it works.
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!

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

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