Tuesday, November 29, 2011
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!



My entire pregnancy was rough, but little did we know how rough things were about to become.  I had a regular appointment with my OB on the Monday after Thanksgiving.  I just started my 3rd trimester, and in the prior week to my appointment I started to experience some swelling in my feet.  My pregnancy-induced carpal tunnel also was acting up more than usual, and my fingers were so numb that I lost a lot of sensation in them (writing and typing were becoming a challenge).  I remember talking to my mom about it, mentioning that by the end of a day of teaching my feet resembled that of a Cabbage Patch doll.  I chalked it up to normal third tri swelling, but made a mental note to talk to my OB about it at the next appointment.


We spent Thanksgiving with my in-laws, and the swelling seemed to have gone down a bit.  I made sure to prop my feet up as much as possible, and took it easy.  I did the same on Black Friday and that Saturday, but by Sunday my legs, along with my feet, were starting to swell.  Monday arrived, and I was blowing up like a balloon.


Cue my appointment that Monday.  It was an evening appointment, around 6:00.  John came home from work, and we left for the doctor soon after... without eating dinner (I said we'd just eat when we got home, figuring the appointment wouldn't last too long).  Stepping onto the scale was concerning: my weight had dramatically increased again, even with a big change in my diet.  I made sure to take off my shoes so my OB could see the swelling - it was the first thing he checked (along with the little test strip they use to check for protein in the urine).  We didn't finish our appointment - he sent me directly to Labor & Delivery for a non-stress test and a 24 hour urine catch.


I went through the catch before, so I knew how much of a pain it was going to be.  He wanted me admitted because my blood pressure was so high, and I was somewhat grateful because I wouldn't have to worry about doing the test at home again.


Everything looked good on the monitors, and Judith was getting pretty pissed at them; she showed her constant disapproval by kicking the monitors (silly girl).  Nevertheless, I was placed in a room for monitoring, and the nurses attempted to start an IV - I have horrible veins, but it took them over an hour to get the lines in, and they took my 1 good vein they use for blood draws (I was not happy about this).


While all of this was happening, my parents were driving to our place to watch the dogs, and to feed them their dinner.


John was able to spend the night with me, and neither one of us got a lot of sleep.  I was uncomfortable, and didn't have a spare pillow to help make me more comfortable.  I didn't get to eat, and was annoyed by that.  The nurses started the urine catch, and the waiting game for the results began.


Tuesday, November 30th was spent finishing the 24 hour urine catch.  I was placed on bedrest, and was trying to figure out ways to entertain myself.  I had John bring one of my word puzzle books, and I watched a lot of TV.  I was also busy with visitors (surprise visitors!), and received a bunch of phone calls from family.


I think by this time, the dogs had basically been placed in my parent's car, with their things, and taken to their place to stay while I was hospitalized (John was still staying with me, and going to work from the hospital).  They were very upset, and really didn't know what was going on - Lady knew something wasn't right before I was hospitalized, but I'm sure she knew something really wasn't right.  Buster was extremely upset, and still stresses out if we have to leave them overnight.
That evening, we finished the urine catch, and everything was sent to the lab for testing.  We were told my OB would get the results first thing in the morning, and would talk to us then.


I was hoping that things didn't look too bad.  I knew that it was way too early for Judith to come, as I was only 28 weeks and 6 days along.  I wanted to try to make it to at least 32 weeks, knowing that even if she had to come early, the longer she stayed inside, the better off she'd be.  At that point, I didn't care if I had to be on complete bed rest, but I really wanted to be able to do it at home where I could at least be comfortable in my own bed.



Wednesday, December 1st dawned a very warm, rainy, stormy day.  It was unusual weather for that time of year - temperatures were well into the 60s, and it felt more like spring than late fall/early winter.  This was also the day when the shit really hit the fan.


My OB indeed received the results of my urine catch, and it was not good: I had +3 edema, particularly in my legs; my kidneys were spilling 10+ protein, and were on the verge of shutting down.  He broke the news to us that I had  severe preeclampsia, and his goal was to have me make it as long as possible before delivery so they could administer steroid shots to help Judith's lungs develop.  He informed me that I would have to be transferred to a different hospital, one with a Level III NICU that could handle a very premature baby.  He explained that St. Joseph (where I was at) had some sort of relationship with St. Luke's in Bethlehem, and that was where they were going to transfer me.  My perinatologist was from St. Luke's, so I felt comfortable being transferred and placed under his care up there.


I was immediately started on magnesium sulfate, to help prevent any seizures that could be caused by the pre-e.  If you have never been on mag, I hope you never have to be.  That stuff sucks.  They give you a bolus over the course of an hour, and it's wicked - you get major hot flashes, and it can make you nauseated (thank God I avoided that part, but it did make me feel very funky - like an acid trip or something).  They also had to place a catheter, because the mag pretty much robs you of the ability to walk like a normal person; my urine output also had to be monitored, so this was an easy way for them to do so.

 
A group of student nurses was on the floor that day, and they asked if it would be ok for them to place the catheter.  I'm big on learning opportunities like these, and it didn't bother me.  Just my luck, though, it was storming at the time, and the freakin' power went out right as they were getting ready to place the catheter.  It took a little bit for the generator to kick in, and once it did the ladies got everything placed quickly and accurately.


I spent an hour in a medical van on the way to Bethlehem, and that was one of the most uncomfortable trips of my life.  I had some bad sciatica by then, and every bump hurt my poor bum.  I couldn't move my legs around (strapped down for safety), and I couldn't switch positions.  Combine that with the looming fact that I was only 29 weeks along and was facing the very real possibility of my daughter arriving by the end of the week.


My mom and John drove separately, and met me at the hospital.  I arrived first, because John got directions to the wrong place.  I was settling into my room by the time they figured out they were at the right place, and I had an ultrasound scheduled with my peri.  Mom didn't stay long - it's a good hour and a half drive for her, and she needed to get home; she stayed long enough to make sure I was settled, then made the trek south.


John went with me to the ultrasound, and the peri took a look at everything.  The day before, I had an ultrasound at St. Joe's, and my OB noticed something funky with the placenta.  My peri told us what happened: as a result of the pre-e, my placenta shut down, and Judith stopped growing.  It happened in the span of 2 weeks - I had an appointment with him 2 weeks prior, and everything was fine.  He also told us that because the pre-e was so bad, Judith was Intrauterine Growth Restricted (IUGR), and because my placenta wasn't functioning, they would have to deliver as soon as possible.  The hope was for me to hold out long enough to get the 2nd steroid shot, and they would schedule a c-section for 24 hours after the last shot (Judith was also breech, so an induction wasn't even possible).  They would perform an emergency c-section if things deteriorated further.


Thursday, December 2nd was a bit hazy.  I was on the mag for 24 hours, and feeling rather loopy from it.  My vision was starting to go double, but would resolve itself - a side effect of the mag rather than problems from the pre-e, thank goodness.  I couldn't sit completely upright, because I would get dizzy from the mag, and it was getting harder to watch TV because I couldn't focus on the screen.  John decided to go into work for a few hours that morning (his bosses and co-workers all declared him nuts), which in retrospect was probably good because he would've driven me nuts.  Plus it gave him something to do, and something to help take his mind off of everything.


The important event of the day was getting the 2nd steroid shot.  Honestly, I don't understand why so many women complain about these, or why they declare them so painfully evil.  Yeah, it stung a bit, but it wasn't nearly as bad as I was anticipating.  Maybe it's all the padding I have back there or something, but I'd take the steroid shots over the mag any day!


We had consults with a bunch of doctors, most importantly with the neonatologist.  He was able to give us some general expectations about babies born at 29 weeks: these babies have a very high survival rate (over 90%), and we could expect an average of 8 weeks in the NICU.  Some form of respiratory assistance would be needed, whether it was a ventilator or CPAP.  I was told I would have to pump breastmilk for her, since she would not be able to nurse directly for a while, and would receive her feeds through a feeding tube.  We were told to expect an umbilical line to be placed, hopefully quickly followed by a PICC line.  This consult helped a little bit, because I was able to realize that they would do everything possible to help her fight and thrive.  Not that it took away the fear, worry, and anxiety over her early appearance, but it was almost comforting to know that she would be in the best of hands.


John & I went on a tour of the NICU, and were able to see where Judith would be spending the next weeks of her life.  We saw a quiet room, had the monitors explained to us, and began to prepare mentally for all of the tubes and wires that would be hooked to her tiny body.


Our pastor came to visit that afternoon, and it was a pleasant diversion for me.


I was allowed to take a shower that evening, and it was much needed - I felt so scuzzy by this point, and my hair was a greasy mass.  John laughed at me so much, and if I knew I could get away with it I would've slugged him - because of the mag, I couldn't stand upright, and resembled a drunken sailor trying to walk to the shower.  I moved slower than a snail, trying to keep my balance, and for the first time he had to actually help me bathe.  The shower felt good though, and it was nice to go back to my bed feeling clean and less greasy!


With my c-section looming the following day, my oral intake was stopped.  I was without water, and was getting so thirsty, but I knew it had to be done to help prepare me for the morning.

 
Friday, December 3, 2010.  A date that will forever have importance in our lives.  Judith was born that morning!


We woke up knowing that Judith was arriving that day.  My c-section was scheduled for around 10:00, and our family, pastor from our church, and the lay parish assistant from my parents' church all arrived at the hospital bright and early to support John and me (my parents' pastor sat with my grandmother since she was unable to make the long trip to Bethlehem).


The mag was shut off in preparation for the surgery, and that was such a relief for me; I didn't feel the effects wear off for a little bit, but it was nice to not have that constant flow anymore.


Naturally, they were running behind in the OR, and I was taken to surgery later than anticipated.  John looked a little silly in the scrubs they gave him, but I was looking forward to seeing his reaction when Judith was born.  I decided that, as much as I would've liked pictures of her birth, it was easier to not have him try to learn to use my camera so he could get shots, and we doubted we'd be able to get any good shots since the NICU team would have to whisk her off to stabilize her.  It's a good thing we didn't plan on it, because it never would've happened anyway.


I was supposed to get a spinal, and once that was placed, John would join me in the OR.  God bless the anesthesiologist: he tried 6 times to place it, but couldn't advance it past my vertebrae for some reason.  So general anesthesia it was, and John was not permitted in the OR.


Judith was born at 11:44 AM, weighing 2 lbs even and measuring 14 1/4" long.  Her Apgar scores were decent for a preemie: 6 and 8, I believe.  More stunning was the news that she was breathing room air, and needed little oxygen intervention.  They did place her on CPAP - the pressure was needed to help keep her tiny lungs open, and she essentially was breathing pressurized room air (or 21% oxygen).


Let me tell you: waking up from general anesthesia after a c-section hurts.  They couldn't start the morphine before that, and I was in the worst pain of my life.  It took a few hours for things to settle down, but once it did I was good to go.  I am sad, though, that because of everything I was unable to see Judith her first day of life, save for a couple minutes when they wheeled me into the NICU before taking me back to my room.


John took pictures (after me giving a very drowsy crash course on using my DSLR), and participated in her first care times.  I'm grateful that he spent so much time with her the first day, so she knew her daddy loves her and would be there for her.  He brought reports back to me, and I was excited to hear that she was doing well.


Judith, only a few hours old.

 
I cannot believe it's been a full year since our lives were changed so drastically.  No one ever anticipates a preemie or a NICU stay, and I truly never believed we would be in that boat.  A lot has happened over the past year, and I am thankful that Judith has done and is doing as well as she is.  She truly is a little miracle!

When you’re struggling to produce milk early, you’ll quickly learn the value of spilt milk and likely cry over it, too. Here are some tips from the ladies of The Bump to help pick you up and get back on track.

·         Every drop counts. If you produce one drop your 3rd try they will feed it to your baby and make you feel like the champ you are! Use a syringe to gather those first drops.

·         You must establish your supply ASAP! Pump 8-10 times per day without fail – once you have a steady supply many of us drop to 6-8 times with a six hour solid sleep stretch at night.

·         Take pictures of your milk lined up each day. Your supply is increasing but it helps to document it with a visual aid.

·         Look at pictures or video of LO while pumping.

·         Have a support system in place. Whether it’s family, friends, or an online group like The Bump – it’s essential to surviving the pump and establishing your supply.

·         Practice hand expression.

·         Set up your pump area at home so you have somewhere comfortable to sit. Always have water on hand. Snacks, books, magazines, laptop, Netflix, Hulu…you’ll be there a lot!

·         Consider renting a pump from the hospital. They are the best and you’ll produce more.

·         Buy (or make DIY-style) a hands-free double pump.

·         Do kangaroo-care (skin to skin) as much as possible while in NICU and when LO comes home.

·         Ask to do non-nutritive breastfeeding as soon as possible. Pump right before feeding baby so they won’t be overwhelmed and can practice latching.

·         Tip for moms of multiples: if one baby is a good BF’er and one isn't, continue with the one that is because it will help your supply, which is key. Eventually, the other should pick it up and if not, that is ok too.

·         Try different holds and positions! From what I’ve heard often the side-lying position can be the golden ticket – easy on you and baby! Your LO will prefer a hold and probably a nipple so make your way around the different combinations while giving LO a chance to lead you.

·         Don’t be afraid to use a nipple shield if your LC recommends it. Once LO is BF’ing you can work on weaning him from it. Whatever you decide remember consistency is key. Nipple confusion is real! NICU babies are often too small to latch without a shield.

·         Other nipples! You’ll want the slowest flowing nipples possible. A good suggestion is the Medela Special Feeder.

·         If you’re nervous LO isn’t getting enough once home head into your pediatrician and/or BF’ing center to weigh them pre/post feeds.

·         Consider a holistic approach: Fenugreek and Blessed Thistle.

·         Eat oatmeal or other high-carb foods.

·         Ask your doctor about prescription-strength aids and if they think that’s the right path for your situation.

·         POWER PUMP! I (Stephanie) didn’t know there was an actual method to this, so once my milk came in I’d pump 45-90 minutes solid once/twice a day to really kick up my supply. Here is the proper way to power pump thanks to Katie! Power pumping is pumping at the same time of day for an hour. Not an hour straight. It is an hour total. 10 mins on and 10 mins off for an hour. It is supposed to simulate cluster feeding which babies do at night before bed or when they are gearing up for a growth spurt. You'll need to do it for about 3-5 days to see a real boost.

·         Remember, you’re drinking for two!

·         Keep up a good diet. Freezer foods are helpful so if someone offers – take it! Keep snacks around the home and in your bag for on-the-go.

·         One mother suggested researching what a real latch looks like on YouTube.

·         The mess can wait! Put housework on hold and just focus on pumping/BF’ing right now.

·         Relax! If you’re nervous or anxious you won’t let down. One mom wrote that she had to turn the pump on for the familiar sound of it when it came to starting to BF at home with her DD.

In the end, it's practice that makes perfect. Give your LO every chance possible.


Monday, November 28, 2011


My son Kevin was born at 26 weeks, 4 days. Before he was born I admit to having very set feelings about breastfeeding. I was going to be a breastfeeding champ. I would nurse him for 12 months, maybe more.

My aunt was a lactation consultant at the hospital where I delivered so by the time I got back to my room after the c-section a hospital grade breast pump was already there waiting for me. I was determined to pump, in part to make up for my body failing the pregnancy. This was the one thing I could do right for my son and that idea, that this was the “One thing [I] could do” was drilled into me over and over by doctors, nurses and lactation consultants.



But my body failed to cooperate once again. It was probably partly due to ill fitting equipment (quickly rectified) and bad advice (one awful night nurse who laughed when I thought my milk had come in. It had. She was wrong) but mostly it was just the situation. I was trying very hard to keep it together as my son clung to life for the first few weeks and all the advice I read was to “think of your baby while you pump” or “pump while surrounded by your baby’s things” or “pump while looking at a picture of your baby”. Surrounded by your baby’s things? His nursery was still a guest bedroom. I tried to look at pictures of Kevin and to think of him while I pumped but I simply dissolved into tears and my husband would then walk in on his nutso wife double pumping and sobbing.


I agonized over the fact that, again, my body wasn’t cooperating – much as my body failed to maintain my pregnancy, it failed to generate enough milk. I stopped pumping six weeks after my son was born. That's it. Six weeks. I just knew it wasn't working for me (I was excited to get 20 mls - that's not even an ounce) and I knew it would be a very long time still until we could try breast feeding.

It was the hardest decision I ever made. Ever. I'm not even exaggerating a little bit.

So I researched breastfeeding / pumping and micro preemies. I found that only 25% (approx, I don't remember the exact number but under 30%) of moms where the baby was born before 28 weeks are able to pump longer than a month (or so - again, I forget the exact number) but the point was my son had months ahead of him in the NICU and I had to stop for my own sanity.

And even knowing all that I still felt like this was the one thing I could control and once again I was failing him. And worse, I was choosing to fail him this time because I wasn't hooking myself to that pump 24/7.

I grieved. I never grieved how my pregnancy ended or even asked "Why me?" about anything but pumping.

Around the four week mark the writing was pretty much on the wall. I still did everything to try to get my production up. I drank tons of water, I tried self expressing, I used a hospital grade pump, I spoke with both my OB and my favorite Neo about anything I could take that would improve my output and would be safe for my son.

Nothing helped and I was sinking further into depression – not PPD or depression related to my son being in a life and death situation. Depression about pumping. I spoke to my husband and he was very clear, he appreciated that I was doing my best and he fully supported me with whatever decision I made.

For the next two weeks I pumped less, I gave up the overnight pumping to allow myself a decent night sleep and I slowly became a more sane person. And then, at the six week mark, I stopped.

For the next two weeks I questioned my decision but I knew deep down it was the right call for me.

Kevin continued to receive donated milk – even receiving some that was specially fortified and cost an astronomical sum. And then he transitioned to formula and continued to grow like a weed. He came off the respirator at 64 days, spent a week on CPAP and then was on high flow nasal cannula until the week before his discharge. He has reflux and BPD.

Today Kevin is just under 12 months old and continues to receive Neosure (at the 26 calorie recipe) and is just beginning solids.

Over the course of our NICU stay, we dealt with a lot of obstacles. One of the greatest, non medical, challenges we faced was bringing one baby home while the other was transferred to another hospital. Addison needed to be transferred at 40 weeks for a consult for a Nissan Fundo & G-tube, Blake would be coming home….just a few short days after my EDD. I am very unbelievably fortunate with the timing of it all, in hindsight.
Our “home” NICU team of Neo’s all worked at the “new” NICU, which meant with the exception of a few doctors, I’d have some consistency. The doctor’s coordinated things for me so that Addison would be transferred and placed under the care of the Neo who admitted her to the NICU the day she was born and also spent several weeks with Addison throughout our stay. I knew after that, it would be a different Neo but prayed it would be one who knew her well. But what would I do without these nurses, our“family”, would the new nurses treat me like I have no clue what to do with Addison? Or would they be just as kind and loving and more important would they love Addison like her “home” nurses do?
Day 104 – I arrived at the hospital by 7am (the start of day shift) and waited for the transport team to arrive. While I waited I cuddled Addison and told her that it was really important that she behave herself during her first car ride. I also reminded Blake that I would be back later that night to room in, and that it was equally important that he behaved so he could “go to the zoo” the next day. (Another TB mom shared with me this cute phrase used as code for coming home, because we all know if these preemies here the “H” word they get all funny on us.) I was a nervous wreck because I was told I wouldn’t be able to ride with Addison to UMMS. I’d have to follow behind in a car, but I could at the very least walk her out and watch them load her up. That I did…
Our first day at UMMS was less then exciting. I met her nurse, I got a big hug from Dr. D (the Neo attending) and she introduced me to“Addison’s team”. At UMMS they have two teams and two Neo’s attending (the NP Team and the Resident Team) Addison was assigned to the residents. I basically spent 8 hours at Addison’s bedside while they got her settled, vitals, diapers, forms, etc. I made sure that Blake would be able to come back and visit with us, over and over again. I left that day around 4pm in hopes of going home to nap before going to camp out with Blake.
Initially I think the first few days of the transition went very well. I was beyond amazed when within the week they were able to take Addison off the cannula, despite our “home” NICU’s failed attempts. I prayed that maybe we wouldn’t need that surgery after all. On the afternoon of May 27thwe brought home Blake. As much as I wanted to be in two places at once we all agreed that we would spend the first night and the following day with Blake, getting in to some kind of routine and getting to know him without the nurses around. We managed to survive our first 24 hours and the next day we went to visit Addison.
Because of the weekend, etc not a whole lot in the terms of consults etc was happening at the hospital. In fact the ball really didn’t start rolling with Addison until the following week, after we had yet another family meeting to discuss a plan of care. The new hospital meant new visitor rules, ok well not “new” but with a baby at home “different” rules. In the first NICU because we had twins, each baby was allowed 2 visitors, meaning 4 total (me, hubby and 2 others). In this NICU it was still 2 but only one baby so me and hubby (and fortunately Blake). Bath time at this NICU was 2pm, where it was 9pm at the first NICU. Hubby missed a lot of baths, and I did too most of the time. There were new nurses, and a few new doctors, and trying to explain to them what “worked” for Addison didn’t always go over so well. I also went from a hospital with a weekly support group, to nothing really, at a time when I probably needed it most.
Meanwhile life at home with Blake was busy too…
My days consisted of feedings at Midnight, 3am, 6am, and9am, then a quick shower while Blake napped and then we loaded up to head to visit Addison while my husband worked. I was usually at the NICU in time for rounds and would stay as long as Blake would tolerate, usually this was 3 hours if I was lucky. Juggling spending time with Addison all while being Blake’s primary provider was a challenge. Most of the time, sadly, I was just “there”.Home by dinner time, quick dinner and then hubby and I would load up Blake and head back to visit from 7-9pm. Then it was bedtime, and “listen to Blake babble.” He got these crazy ideas that he needed to talk to us in the middle of the night. It was cute but man did we need to sleep, despite what Blake thought.
This went on for almost TWO WHOLE MONTHS. I don’t know how I survived some days. Blake had appointments with the Ped, OT, PT, a home health nurse, NICU follow ups, the eye doctor, you name it. I made it work somehow; you just do because you have to. I remember crying sooo hard the day Addison was transferred and the day Blake came home. It didn’t matter how happy I was to bring Blake home, I was heartbroken to leave Addison behind, I was heartbroken to leave behind the doctors and nurse who kept my babies alive. These amazing people taught me how to take care of my little ones, would I be able to do it without them? What if Blake’s monitor went off, would I remember what to do? I did, and I would.

Our story actually begins back in August of 2010, after 3 long years of battling IF my husband and I decided we were ready to move forward with IVF. According to our RE it was the "safest" way to hopefully have a viable pregnancy with the least risk of mutiples. When the time came for our Egg Transfer, we were down to two A quality embryos with two more that were B quality to be hopefully frozen for later use. We made the choice to put those two A quality embryos back and two weeks later we found out that our 1st IVF attempt worked! We were elated. We also found out the other two embryos did not make it to freeze. It was another 4 weeks before our first ultrasound and I thought for sure I was going to have to scoop my husband off the floor the first time, not one but TWO heartbeats flickered on the screen and the doctor excitedly confirmed "IT'S TWINS!"

 With each passing week and each passing ultrasound we became more and more excited. Close family and friends already knew our BIG news, and we breathed a huge sigh of relief at 12 weeks (typically when miscarriage rates decline). At 13 weeks our world started to flip upside down. I was at work one evening and on a call with a customer and I remember feeling this gush almost like I had gotten a period. I remember putting the customer on hold and rushing to the bathroom. I didn't even have to look down, I was sobbing hysterically. I couldn't even get the words out to tell my supervisor that I had to leave. A coworker drove me to the closest ER where my husband met me and we waited, and waited, and waited. Finally the PA came in and relieved our fears...both babies looked amazing and my blood levels were where they belonged for now. The PA said it could have just been a SCH and in hind sight I remember mention of this being visualized on our first sonogram, but no mention on an sono after that...Not that that makes it any less scary.

I was sent home on bedrest and told to follow up with my OB in a few days.
I ended up switching OB's by week 14 because the OB we first went too was less the compassionate to our situation and lacked bedside manners. It was around this time that we made the decision for me to quit working as well. I remember always being to exhausted (I must have slept 18 hours a day). Things stayed calm for a few weeks until I got an alarming call from the OB just days before Christmas...my AFI came back higher the normal (not uncommon in twins, but alarming nonetheless). The day before Christmas Eve I was scheduled for an appointment with a Peri, after finding out that all "appeared" well, they revealed the gender of the twins... A BOY AND A GIRL... !!!! We were over joyed and excited. I remember when we found out Twin A was a girl, hubby was holding his breath until the tech revealed Twin B was a boy. He was covered in sweat and pale. When he spoke he said, "I thought for sure we were having two girls and I was going to spend a lifetime worry and cleaning my shot gun, at least this way she'll have a brother to help me keep an eye on her." We all breathed a sigh of relief.

And then the Braxton Hicks contractions started, they were weird and unexplainable but nothing I couldn't handle. The OB checked us and I had been to the Peri many times, all was well, until Jan 12th. Something was off. I remember laying down for a nap and feeling like I wet myself. For the most part I could have sworn there was a baby on my bladder and I felt pressure and urgency. This caused my first visit to L & D...after a 4 hour wait only giving a urine sample I was told everything was fine and sent home, no sono, exam, nothing. This went on for 4 days and it was sporadic but uncontrollable. After another visit to L & D and begging the on call to hear me out, they were convinced that I was "leaking" amniotic fluid, but each baby's fluid level measured well so I was sent home. the next day I saw the Peri again and Twin A's fluid was very minimal. I remember the ultrasound tech leaving the room and the long long wait for the Peri to come in.

Everything came to a screeching halt.......words were flying around, "Micrognathia", "ASD", "Possible VSD", "Not compatible with life if born prematurely," "Risk for infection" and then "Termination." The following words will forever echo in my mind, the Peri (not our normal doc, but his covering doc) said, "I am sure this pregnancy is very desired considering the route you took to become pregnant however I am telling you that it would be safest to allow us to terminate Twin A and give Twin B a fighting chance. And then we can test the other twin and determine what caused all this." Thank God for my husband (who is often quiet and reserved), he fought back when I was speechless and numb, I remembering him saying, "Do you see that little girl on that screen? Do you see her heart beating? That's OUR little girl, and not a chance in hell we'll terminate. As long as her hearts beating we'll fight for her. She's not a science fair project and she'd not a statistic for one of your textbooks. She's a human being, and our child."
The Peri went on to call us selfish and stated that "Clearly we didn't understand the risk, and I could get an infection or worse. And we were risking loosing both babies." At that point I found my voice and asked this Peri to leave. The ultrasound tech was in tears with us, and paged my OB. Luckily for us he was in the same location that day, and had me come in for an appointment. He explained all the risks to us in a much more civil way and promised to support our choice. He also helped us set up for a second opinion at another high risk center. I was only 20 weeks along, babies born at 20 weeks don't survive. I was given a round of antibiotics and sent home. Prepped for the worst...most pPROM (Preterm Premature Rupture of Membranes) cases delivery within 24-48 hours.

Weekly appointments and strict bedrest for the next 4 weeks...every day I prayed and cheered these babies on. Pleading that they stay put. At 25 weeks I was admitted to L&D for steroids, after they were complete I begged the docs to let me go home, the thought of staying in the hospital was too overwhelming. The doctors understood and sympathized but I would have to sign out AMA. In a bold move (that some strong disagreed with), and with hubby's support I signed out. I came home on a Friday. Saturday I felt ok, anxious but ok. Sunday I felt like I was coming down with the flu. I couldn't get comfy and I felt like baby B was under my chest and I was just plain miserable. By Monday morning (26 weeks) I knew something was wrong. Before my husband went to work I attempted a shower, but it didn't help. I was convinced this was it. Hubby called his boss and we headed to the hospital. By the time they got the monitor hooked up right I was contracting 3 minutes apart.

My OB walked in and did an exam. Not dilated, but the look on his face told it all... Baby A (Addison's) heartrate was dipping and the sky rocketing. My OB looked at me and said, "Well Happy Valentine's Day! Your babies will be here by lunch," he turned to the nurse, "Start prepping the OR." At 1:10 Addison made her debut and Blake arrived at 1:11. It took another 45 minutes to stop my bleeding and stitch me up. The NICU team brought Addison by in her "carriage", aka mobile isolette, and said "Hi Mommy," then swoosh, gone. I don't even remember what she looked like. Blake was taken to a separate OR with a separate NICU team, hubby was the only one who got to see him.

I "met" both my babies for the first time around 6pm that night. It was then we were told that Blake was stable, but Addison needed to be Baptized if we so desired (the hospital only does them in life or death situations). It was all a blur I nodded yes and the Pastor performed her bedside Baptism. I sobbed, the nurses cried and then I was whisked off to my room in Mother/Baby to recover. I didn't make it back to the NICU until much later when I was finally able to walk. By that point the Neo had already paid us a visit and asked just how far we wanted him to go with Addison... Without a doubt our answer was, "All that you can do."
We later learned a lot of things that we didn't know in the beginning. Addison left us for a period of time once she arrived in the NICU, the doctors were sure she wasn't going to make it. In the first 48 hours of life she had several chest tubes, was on the Oscillator and we were warned that we might be faced with some tough choices in the coming days. Blake was such a rockstart and did fairly well. He remained stable most of his NICU stay. Once the dust settled, we learned that Addison did not have Mircrognathia, she did have a PDA but no ASD or VSD. (How wrong the Peri was). Genetically speaking all of her bloodwork was normal at this point. Both of our babies continued to defy the odds every day.

They are both now 9 months old, we've had some rough times but we've all survive. Addison does have a cleft palate that wasn't found until probably 35 weeks adjusted, and she had surgery for a Nissin Fundo and G-Tube. Most of her nutrition comes from the G-Tube, however we are working daily on increasing her oral feeds. Our goal is to have her ready to transition away from the G-Tube after her cleft palate repair in April/May 2012, so closer to her 2nd birthday. Blake came home from the NICU on oxygen for feeds only and a monitor for about a month but is otherwise doing well. He loves, loves, loves to eat solids and is undeniably a Momma's boy.


Tuesday, November 22, 2011
(This was written several months ago as part of our personal NICU blog for friends and family but I think its appropriate to share again here.)

This is one of the first questions we get when people see Cora. Of course we don't get out much so this comes mostly from people at the doctors' office or people we meet on our nightly walks in the neighborhood.

The answer to "how old" is a tricky one. For at least the first year of her life, Cora has two ages. Her actual age-the amount of time that has passed since her birthday. And her adjusted age-the amount of time that has passed since her due date. For most things she is caught in between the two ages.

In some ways, Cora is a 3 month old baby. She's been eating, breathing, experiencing the world for that long. As parents, we've had all that time to get to know her and learn to interpret her cues. But in most ways, Cora's development is tied to her adjusted age. She will hit most major milestones based on her gestational age not her real age. This means she will be about 3 months behind her peers on a lot of developmental issues. Her pediatrician watches her growth on a special preemie chart (Cora is almost in the 50th percentile!) rather than one based on her age since she wouldn't even be on the chart at all.


To help Cora catch up, she is enrolled in a program called Early Childhood Development. ECI is a team of specialists who work with low birth weight babies for the first three years of their lives to help them catch up to their peers. Right now Cora has an Occupational Therapist and a Nutritionist who visit our house regularly. Her OT comes every other week and works on developing muscle tone and cognitive behaviors such as making eye contact. The nutritionist comes every other month to help make sure Cora is gaining weight and growing appropriately. Both give us homework after every visit so that we can work with her daily.

So we have a 3-month-old-newborn who will do things at her own pace. Right now she is working on head and neck control, grasping things with her hands, and focusing on toys with her eyes. We've seen her make big leaps in each of these areas in the last week and celebrate every tiny milestone, just as we have since her birthday (real or adjusted!).
Monday, November 21, 2011
My son, Zach, was born at 26w and 3d gestation. From the beginning, we had a very easy ride. He was on the ventilator for a few days, and then moved to the CPAP for several weeks. He went back and forth between the CPAP and high-flow nasal canula as his impending discharge approached. Then, it came time for his room-air trial about 2 weeks before he was sent home.

Apparently, our insurance company wouldn’t allow our son to go home on oxygen without trying to breathe room air first. The nurses and doctors were setting the stage that we’d end up having to come home with Zach on oxygen for a short time, but then he surprised everyone. He did great on his room air trial. He’d always had a lot of apnea and brady episodes, and putting him on room air didn’t seem to affect that. By that point, he was only have an occasional apnea or brady, and, since he wasn’t requiring any stimulation from them, our NICU was prepared to send us home without them being fully resolved.

After a week or so, it became apparent that Zach was going to need at least some oxygen support. His weight had leveled off, and the staff thought it was because he was working too hard to eat and wasn’t getting enough oxygen. So, we were sent home with oxygen only with feeds (I had major emotional issues with him going home on oxygen at all, so oxygen with feeds became the compromise). All babies that go home on oxygen are also sent home with an apnea / brady monitor.

In Zach’s first month home, he had 38 events, none of which required stimulation. He hadn’t had a stim event for many weeks before discharge. He remained on the monitor for a total of about 5 months (until 4 months after his due date). At first, it was hard, but it got much easier. 




Looking back, there are a few things I wish I would have known:

    1. Don’t compare your experience to that of others. My son had a TON of bradies in the NICU. That was his “thing,” but he never had any serious complications. Overall, we were very fortunate that our baby born at 26 weeks never had any complications (and I always knew that), but it was still hard not to compare him to other preemies who were on monitors for just a short time.
    2. Be patient. That’s so hard to do, but it’s true. Someday, it will all be a memory. My son is almost 10 months old now, and the apnea monitor is just a memory at this point.
    3. Be assertive. My son NICU time was at a different hospital than the NICU that managed his monitor. The NICU where my son was born was very progressive with just about everything (they wouldn’t have sent us home with a monitor at all if he hadn’t required the oxygen, even though he was still having bradies), but the NICU that monitored his monitor was much more old-school. We were very aggressive about trying to get our son of the monitor because we truly felt he didn’t need it. After the first month, he would only have an episode every week or so, which is about what you’d expect in a term baby. When our monitoring NICU gave us the option to take our son off the monitor at 4 months corrected, we jumped on it.
    4. Figure out a way to make the monitor work with your lifestyle. When our son was on the monitor 24x7, we basically just stayed in the living room all day. It was also flu season (he came home at the beginning of April), so we were quarantined regardless. We did take him for occasional walks, which helped, but, with learning to breastfeed and adjusting to being home with our baby, we were fine staying home. After the first month or so, we were allowed to only have our son attached to the monitor while he was sleeping – he could be off of it if we were watching him. Even then, though, we kept him on it most of the time. Why not? It gave us peace of mind.
    5. Check in with your husband on how he feels. My husband loved the monitor. LOVED IT. He felt that it gave him so much peace of mind to know that our son was still breathing when he was out of our sight. I, on the other hand, was always ready to let it go. Maybe I was just in denial of the situation, but, regardless, getting on the same page with my husband was important.
    6. Be ready to let it go. Someday, you’re going to have to let the monitor go. It’s scary, and many parents are like my husband in that they like the peace of mind the monitor brings. If you feel that you need the monitor longer, ask for an extension. But, in some ways, you’re just delaying the inevitable. If you KNOW your child is ready to give up the monitor, try to take the leap.
    7. Hydrocortisone helps with rashes caused by the leads. My son developed a rash from his leads, and I wish I’d asked his pediatrician about it sooner. Hydrocortisone would have helped more if I’d started it sooner. I also should have used the lead belt sometimes to give my son’s skin a break. We usually kept the leads on 24x7, even when he wasn’t hooked up to the monitor. I should have figured out sooner how to give him a break.
    8. Change the leads frequently, and don’t feel guilty about it. The medical device company couldn’t understand why we were going through so many leads, but it was because we were changing them every day. My son got a bath every day, and we always changed his leads when he got a bath. If he had old leads, they’d have all sorts of false alarms. It’s not worth your sanity to try to save money by reusing old non-sticky leads. Don’t feel bad about requesting more, and don’t take no for an answer from the medical device company.
    9. Save an extra set of leads for your baby’s baby book or memory box. I grabbed a set before we sent the monitor back, and I’m glad we did. It’s a part of the experience, and, while it wasn’t a happy memory, it was still a part of the story of my little guy’s early days.
    10. CELEBRATE when you finally get to give that thing back. You know that scene in office space where they smash the printer? I always envisioned doing it to the apnea monitor. I didn’t, of course, but I fantasized about it all the time. I just had a beer instead.

Here’s the scene from Office Space, if you’ve never seen it: 



Saturday, November 19, 2011
When is the best time to send out a birth announcement for your preemie? Should you include pictures from the NICU with wires, tubes, and breathing assistance?

Believe it or not, this was one of the first conversations I remember having with my mom after Cora was born. I personally was not emotionally ready to send out announcements until after our baby was home but I was really concerned about making sure that people would know about her birth and the way she began her life.

We chose to wait and send our daughter's birth announcements out after she came home from the NICU. I wanted to find a way to celebrate her birth and her homecoming to show how far she had come. So her announcement listed her birthday and birth weight (2 lbs 10 oz) and then read "welcomed home on May 13, 6 lbs 6 oz" to give people an idea of what a strong baby she was.

We were very lucky to have professional photos done while we were in the NICU. We waited until she was off all breathing support when we thought she could best handle such an exciting event. She still had an NG tube and of course all the leads and pulse ox but by that point she was mostly a feeder-grower. Her nurses worked with us and the photographer (a family friend) was amazing. The result was beautiful pictures that showed how tiny our little girl was (she was exactly 4 lbs that day). We used some of these on her announcement. This is one of my favorites, believe it or not, this was taken inside her isolette.



Other families choose to send the announcements out while their babies are still in the NICU which is amazing as well. Addressing envelopes gives you something to do while sitting next to your baby's isolette or crib and I think it is an amazing way to invite others in to celebrate your baby's birth. I love announcements that have pictures of babies with tubes and wires--that's the reality of how our babies started their lives. And its a beautiful testament to the strength that comes with being a preemie. One of our best NICU friends felt like they had missed the window for birth announcements after their six month NICU stay with their 24 weeker. So instead, they are sending out "one year announcements" to celebrate how far she has come in the last year.

Ultimately, when and how are up to you. But I encourage you to send announcements at some point. Your preemie has an incredible story to tell--share it in as many ways as you can!
When you’re struggling to produce milk early you’ll quickly learn the value of spilt milk and cry over it. Here are some tips to help pick you up and get back to pumping!


·         Every drop counts – literally. If you produce one drop your 3rd try they will feed it to your baby and make you feel like the champ you are!


·         Catch every drop with a syringe.


·         You must establish your supply ASAP! Pump 8-10 times per day without fail – once your supply is in and solid many of us drop to 6-8 times with a six hour solid sleep stretch at night.


·         Take pictures. Your supply is increasing but it helps to document it with a visual aid.


·         Look at pictures or video of LO.


·         Have a support system in place. Whether it’s family, friends, or an online group like The Bump – it’s essential to surviving the pump and establishing your supply.


·         Practice hand expression.


·         Set up your pump area at home so you have somewhere comfortable to sit. Always have water on hand. Snacks, books, magazines, laptop, Netflix, Hulu…you’ll be there a lot!


·         Consider renting a pump from the hospital. They are the best and you’ll produce more.


·         Buy (or make DIY-style) a hands-free double pump.


·         Do kangaroo-care (skin to skin) as much as possible while in NICU and when LO comes home.


·         Ask to do non-nutritive breastfeeding as soon as possible. Pump right before so baby doesn't get much but can practice latching.


·         Tip for moms of multiples: if one baby is a good BF’er and one isn't, continue with the one that is because it will help your supply, which is key. Eventually, the other should pick it up and if not, that is ok too.


·         Try different holds and positions! From what I’ve heard often the side-lying position can be the golden ticket – easy on you and baby! Your LO will prefer a hold and probably a nipple so make your way around the different combinations while giving LO a chance to lead you.


·         Don’t be afraid to use a nipple shield if your LC recommends it. Once LO is BF’ing you can work on weaning him from it. Whatever you decide remember consistency is key. Nipple confusion is real! NICU babies are often too small to latch without a shield.


·         Other nipples! You’ll want the slowest flowing nipples possible. Suggestions include the Medela Special Feeder.


·         If you’re nervous LO isn’t getting enough once home head into your pediatrician and/or BF’ing center to weigh them pre/post feeds.


·         Consider a holistic approach: Fenugreek and Blessed Thistle.


·         Eat oatmeal or other high-carb foods.


·         Ask your doctor about prescription-strength aids and if they think that’s the right path for your situation.


·         POWER PUMP! I (Stephanie) didn’t know there was an actual method to this, so once my milk came in I’d pump 45-90 minutes solid once/twice a day to really kick up my supply. Here is the proper way to power pump thanks to Katie! Power pumping is pumping at the same time of day for an hour. Not an hour straight. It is an hour total. 10 mins on and 10 mins off for an hour. It is supposed to simulate cluster feeding which babies do at night before bed or when they are gearing up for a growth spurt. You'll need to do it for about 3-5 days to see a real boost.


·         Remember, you’re drinking for two!


·         Keep up a good diet. Freezer foods are helpful so if someone offers – take it! Keep snacks around the home and in your bag.


·         One mother suggested researching what a real latch looks like on YouTube; I wish I’d thought of that! If LO is consistently drinking small volumes of milk she isn’t doing something right. The faster you figure things out the less damage control you’ll have to do.


·         The mess can wait! Say it with me…all you neat freaks, I promise you that countertop will wait! Just focus on pumping/BF’ing right now because that’s time spent wisely.


·         Relax! If you’re nervous or anxious you won’t let down. One mom wrote that she had to turn the pump on for the familiar sound of it when it came to starting to BF at home with her DD.

In the end, it's practice that makes perfect. Give your LO every chance possible.
Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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