The NICU doesn't get easier

We spent 38 days in the NICU altogether. I really don't know what to say about it except that it seemed like a lifetime. As a new mom, it was the hardest thing for me to do to leave them there every night. They just needed their mommy. They needed to know they were loved and cherished. They needed those IV's and tubes out. It was heart wrenching to see them poked and prodded every day, bruised and swollen, feeding through tubes, sleeping in isolettes, cared for by different people, unable to be together anymore. I wanted to eat, sleep and shower there. I was so happy to see them and so depressed when I had to leave and make the tiring trek back home. I traveled by subway, worried about swine flu, muscles worked to fatigue every day trying to get me there and back after what I had just been through."You do it because you have no other choice," my chiropractor said when she was in awe of how I was walking so soon after a c-section, let alone taking subways and carrying a backpack. I was on a 2 hour pumping schedule to produce enough milk for both of them, and it had worked brilliantly so far! I would sit by their bedsides watching the constant rotation of staff: doctors, physical therapists, specialists, lactation consultants, speech therapists, psychologists, social workers, nurses and anyone else who wanted to talk to me and keep me from my main focus. My goal for the day was the same: spend the entire day kangarooing. Mommy and baby would be in bliss, transported out of the NICU for those precious moments. I just wanted this stage to end... it is not an easy thing to have to go through.

The Nitty Gritty

So, I have been asked to give more details about the pregnancy and the delivery. A lot of you know that I was having significant issues in this pregnancy, and thought it would be a good story to tell. Well, it all started with the weight gain. As I said before, I split through my size 4 in the first 2 weeks and was gaining a pound a week for the first 6 weeks, until the nausea started. This was not just morning sickness, but lasted all day and all night. I was sensitive to smells, unable to cook, for the most part, because the smell would bother me as I was cooking it and the lingering smell in the house afterwards would just about do me in. I ate a lot of meals out, but I couldn't eat anything I used to eat or like, since that would make me sick. No chocolate and no veggies. Fruit was manageable, and that was about it. However, if I didn't eat, the nausea and dizziness got so much worse, almost spiraling out of control. I had to buy new soaps, shampoos, laundry detergent, deodorant, facial lotions, anything with a scent made me cringe because I was so nauseous. Even the "unscented" ones I replaced everything with had a smell to me and if I could smell it on me, I was sick! The worst was dealing with smelly patients at work (which I have a lot of) or the ones who wore a lot of perfume, I had to leave the door open and I would come out green, my nurses laughing every time!

I endured this until my first OB appointment at 11 weeks. Dr. Teicher (who is a father of twins himself) told me that with twins, this nausea usually lasts longer and is worse than with a single baby...these words I would then hear all throughout my pregnancy!! He said it would go away at about 16 weeks, instead of the usual 12 for the first trimester. I remember thinking how the hell I was going to make it 5 more weeks, when every day was agonizing to get through. I was starving, but I couldn't eat and if I didn't eat, it would spiral out of control, so I would be gaging and vomiting. Then I think when I saw him around 19 or 20 weeks, he said "too bad, if it lasts this long...it will never go away." And, the day my water broke, it went away and I wanted to eat finally, however, at that time, I was NPO, I just couldn't get a break!

Then the shortness of breath started. I would typically run for 45 minutes to an hour with Bailey in the foothills 5 or 6 days a week and go to muscle hour and yoga a few times a week. So, I started noticing around 8 or 9 weeks along, that I would be so out of breath along my run out of the norm, that I would have to stop many, many times throughout the run. Then when Brian came out at 10 weeks, we were running and I couldn't make it farther than about 5 minutes without having to stop and catch my breath, and at this point, I measured my heart rate up at about 180. All this and I just kept thinking about a friend of mine who was also a runner, ran 25 miles per week up to her due date!! I felt like such a failure that I wasn't even able to make it through the first trimester. During muscle hour, my heart rate would speed up so fast, I would be dizzy and have to leave the room before I fell down. The same thing happened during my yoga classes. When I was in downward facing dog, you might have thought I just got finished running a marathon, and I practically spent the whole class in child's pose before I had to give it up altogether over embarrassment! I was winded walking up the flight of stairs to my office and up a half flight in my house. The EKG showed prolonged QT of which the symptoms are syncope and sudden death. I was sent STAT to the cardiologist and had a repeat EKG, echocardiogram and stress test. I was given a list of medications I needed to avoid, which would also prolong the QT, and told to refrain from exercising for now. Later when I was on strict bed rest, I was completely out of breath getting out of bed and walking to the bathroom (10 feet away) and back. I would be huffing and puffing in bed much to the chagrin of Brian who thought I was being too loud!

Then, the numbness in my left thigh started. It felt just like I had a shot of novocaine all along the top of my thigh. That weird puffy, swollen, cold tingling feeling you get, that feels so weird to touch it because it doesn't feel attached to your own body - - yes, that was now my leg. Together with outrageous headaches that had me flattened on my office floor in between patients, won my next trip to the neurologist. The numbness was explained as femoral nerve compression from the weight of the babies (and they weren't even that big yet), and nothing to do except deliver those babies. The headaches, she was concerned about an aneurysm and suggested an MRI to rule it out. The symptoms of this were also sudden death.

And all this before my first appointment with the perinatologists at about 15 weeks. I was pretty much the train wreck that most doctors hope knock on someone else's door. So, then the fun started with the blood tests, urine screens, abdominal and transvag ultrasounds every 2 weeks. I had two amniocentesis', one for each twin, tried several medications for nausea, headaches, incompetent cervix and risk of preterm labor. When I got to NY, we were on a weekly schedule to see the doctor and some of those days, she sent us to OB triage and sometimes we were admitted to the hospital for more tests and days of extreme uncomfort. Fortunately, the twins were doing amazingly well. All their tests and ultrasounds found them perfect, growing well, strong heart beats, but my body was just falling apart around them.

Brian came out to visit again for Christmas and I was in worse shape than I had been at Thanksgiving, but I was still only about 13 weeks along. He predicted at the rate I was going that I would be on bed rest at about 20 weeks. I fought him on that one, I said that I was going to work up until a month before the predicted delivery at 36 weeks. But he insisted... or foresaw the future, as it turned out.

I thought I would sleep on all this information for a while, except the insomnia was so bad, even that would not happen. Also, the back pain was now excruciating, I just kept layering my bed and around my body with more pads and pillows in an attempt to get comfortable and feel better. When I was about 12 weeks I was finding it hard to roll myself over in the bed or get out of bed. This is where teaching your lab the command "back up" came in very handy. I would call him over to me in the morning, grab onto his collar and give him the command and rise right up out of bed!! It was great until he caught on. Then he was a little more than reluctant! As the belly got bigger and I was losing muscles on bed rest, I just kept ordering more and more pillows from amazon when I was in NY. Being pregnant and not being in your own home with all your comforts is one thing, this situation was entirely another. Brian was sick of the pillows all around me, he would count them, I think I was up to five or six, taking up most of the real estate in the bed. But the worst part was when I was so big, so weak and in so much pain, I really couldn't roll myself over anymore, he would literally have to hoist me out of bed! It was so demeaning.

Then settling in to Brian's 300 square foot Columbia graduate housing apartment I realized this was probably the best place to be on bed rest. Everything was almost in arm's reach! With no place to unpack my 2 suitcases, they were situated on the floor of the closet. So, as I got bigger, my muscles more and more atrophied, I couldn't bend over to get any of my clothes out of the suitcase or put things away. If I could get down on the floor, I didn't have the strength in my quads to get myself back up. So I could only venture into the suitcase with Brian at home. Which wasn't a whole lot. He was usually gone about 12 hours a day working in his office. He would wake up and ask me what my plan for the day was!! Sometimes I would think he would crack a smile after saying that since my plan was always the same, eat, pee and lay on my side in bed or on the love seat in the living room. "Are you kidding?" I would wonder. Usually I was only comfortable in bed, but the TV was in the living room. I was only comfortable for about 2 hours per day there and that was stretching it. So, I would switch from side to side in bed by myself day after day, reading, checking my email and facebook and staring at "the view" (the grey cinderblocks of the back of the apartment building next door, no view of the sky or sunshine shining through the windows!).

My mom was leaving for a 3 week cruise through China, Thailand, and Vietnam and she didn't want to miss anything. She asked if I could keep a journal that she could read when she got home. She wanted to know what I was doing every day. I told her I could prewrite it before she left and every day's entry would be identical: "today I was nauseous, couldn't eat anything, had to pee a million times, laid on my side in pain." I told her it would not be good reading!!

Then there were also the "normal" things some pregnant women go through. I was hot all the time with these 2 little heaters keeping me warm. It was winter in Manhattan when I arrived and I had to have the heat off in the apartment and the windows open. Brian would complain when he could see his breath in the bed at night! One time I was admitted to the hospital, I thought I was going to die from the heat. The thermostat was in my room, but controlled the room next door also where the poor woman was recovering from a c-section and when her whole body started shaking uncontrollably, they told me I had to turn the heat up a little. I had been comfortable, when the nurse came in to check on me with a blanket wrapped around her and Brian was shivering in his little pull-out bed, they didn't say anything, they finally gave the pregnant woman what she wanted! I also had uncontrollable blues. I think I must have cried every day throughout my pregnancy. I didn't know if this was due to hormones, the problems I was having, having to move across the country, the imminent risk of the twins being born prematurely, the utter discomfort I was in, the boredom on bed rest or any combination of the above. This lasted until about 30 weeks, then it stopped as abruptly as it started. All of a sudden, I felt great. I was under the illusion that I could really make it until 34 or 35 weeks now, things were looking up.

The first week in the NICU

The first few days were definitely surreal. Recovering from the crash c-section, visiting the babies in the NICU in my wheelchair while I was still in the hospital, pumping and delivering milk and trying to bond with the babies in the midst of the controlled chaos of the NICU. They were in the state-of the art, level IV, ranked 6th in the nation beautiful, comfortable, brand new NICU for all of 3 days. We were then informed that the staff during rounds had to determine who were the healthiest babies to move out to the step-down (lower acuity) transitional NICU for feeders and growers. Fortunately (and unfortunately) Chloe and Nate were selected. I was happy that they no longer needed the support of the higher acuity NICU, but where they where sending us was like going from the ultimate 5 star resort to motel 6!! The transitional nursery was in the "old" hospital, it was like walking into an abandoned, smelly, psychiatric hospital. You could instantly tell the nurses and possibly the physician were also a "step-down." Somehow we all didn't hit it off and in the mother's advocation for her babies, I seemed to ruffle a lot of egos up there. I won't go into all the details, but for anyone who would like to hear about it, let me know. I have pictures that are hard to look at and memories that make my blood boil.

Ok, I will list some of the points I remember:

• no co-sleeping twins
• would not allow padded cover for isolettes because the nurses wouldn't be able to see the baby FROM THE NURSE'S STATION!
• left the sunlight and bright overhead lights on them constantly, even after repeated requests from parents for dim lights so they won't squint
• ventilation system old and unable to maintain constant temp, so when they were in open cribs, one day was 65 degrees, the next 80. For premature infants who were learning how to control their body temperature, this is a major setback
• wouldn't keep Chloe in a "snuggle" cushion that was the only way she would sleep and therefore develop because of "nursing" preference
• Chloe's first apneic spell, I was not called and the septic work-up was just initiated
• Nurse smelling of smoke at their bedside, handing the premature babies
• lack of communication about milk supply in the fridge on SEVERAL occasions
• lack of sign out from one nurse to the other, wouldn't follow doctors orders (that we had discussed and it was what I wanted followed)
• misinformation or attitude from select nurses
• no drinkable water (because of past scare of legionnaire's disease), but no access to bottled water on the floor
• babies were separated physically so that I could not "kangaroo" them together or sit at one bedside
• no permanent rockers/comfortable chairs at the bedside for the mom's to hold the babies, pump, breast feed, nap, etc, I had to drag one over every day (no sympathy for mom's recovering from 3 months of bed rest and c-section in a wheelchair!!)
• HUGE controversy about allowing me to have a breast pump bedside for my every 2 hour pumping sessions. I would have to wheel myself to the main NICU in a different hospital on a different floor far removed from my babies
• Then to top everything off, finding Nate with his NG tube taped to his lip and his lip pulled up occluding his right nostril and Chloe same same many times after it was reported to the charge nurse, the risk management team and the Chair of Neoonatology. Then I found Nate lying in a pool of his own dried vomit (dried on lips, cheek, shirt and bed), for AT LEAST 6 hours before I got to him.

I hate to rehash the negatives, because I have 2 happy, healthy, thriving, perfect babies now...but I am just trying to capture the temperature of the moment for everyone to know what we went through. So, please forgive the counterproductivity of that last bit!!! Fortunately, as the head of Neonatology and head of risk management said in my meeting with them over this overt nursing negligence, "no permanent damage was done!!!" Oh, and for anyone wanting to document these hospital mishaps with photographs, just know that their opinion of that is that it is a "confrontational" move, not patient advocation for patients who can't speak for themselves through proper, indisputable documentation.

April 27, 2009, Birth Day

Luckily my mom was visiting for the weekend from Boston when my water broke on April 25th. I was 31 weeks and 2 days. Nothing was easy about this, but it would have been a lot more difficult if not for her being there at that critical point. Thanks mom!! So, we all went in to the hospital for the last time, got hooked up, and by hooked up, I really mean hooked up: I had an IV, an O2 sat monitor, a permanent blood pressure cuff, a contraction monitor, 2 fetal heart monitors and the 2 DVT preventions cuffs on my legs!!! Now you try going to the bathroom every hour or so with all that on without your mother there to help you - - - Impossible!!

Things were going ok until late on the 26th (31 weeks, 4 days) when the babies started dropping their heart rates in a very consistent fashion. The Doctor on call, Dr. Miller, came into my room with his team early in the morning and said he had been watching them drop all night on the monitor and if they were to do it one more time, we would be going to the OR for the c-section!! I was not ready for that, he said this would be to avoid an emergency situation where one or both of the babies heart rates dropped and would not come back up. Which, about 4 hours later, is exactly what happened. The next time I saw Dr. Miller, he swooped into my room with his team of eight, unhooking all my wires from the wall and scooping up the bed to go..."go where?" I asked..."to the OR."

Apparently, Nate's heart rate was down to 60 (from 150) and had been there for 6 minutes before he could get his team mobilized and he was afraid it wasn't coming back up. Well, Brian had just stepped out to get lunch, it was 12:06. I dialed his number and had a split second to hand the phone off to my mom as we were whizzed out the door, crashing all the way down the hall to the OR (doctors are not good bed drivers notoriously and then add all that adrenaline), it was like Mr. Toad's Wild Ride!!

The doors to the OR slammed open as the bed rolled into them (just like in the movies) and there were about 25 more people frantically setting up the OR, rushing around, opening instrument packages, throwing linens and drapes around. Surgical nurses, techs, the anesthesia team, more OB's and perinatologists and all the residents and fellows that go along with both teams. It was a beautifully choreographed dance that I imagine they do a lot in that hospital. This was not a drill to them and Dr. Miller was not his calm, cool, collected self. All he kept saying was "we are going to try to get you 2 healthy babies." Brian was quickly gowned and took his seat behind the drape 20 seconds before Chloe was born. It was 9 minutes from the time I left my room sans spinal, consents signed, prepped and draped... that he pulled Chloe out all blue and fiercely crying and flailing her little limbs around, so perfect. Chloe was born at 12:16p. Nate was born about 1 minute later (12:17p) in distress and he had to be whisked off immediately to the resuscitation room, where he was reported to be hitting and kicking the NICU docs, crying and breathing on his own. Soon after, he became distressed presumably due to the magnesium sulfate I was given prior to delivery, so when he started grunting, he was put on room air CPAP and quickly stabilized with minimal intervention.

Here's a snippet of the birth announcement email I sent out on April 29th:

They are adorable, strong, precious fighters. Yesterday I fed Chloe some colostrum from the bottle, which at 31 weeks they usually haven't developed the skill to suckle, well no one told Chloe that. She is suckling like a champ, breathing on her own, perfect labs and just so beautiful. She was 3 lbs 4 ounces, 15 inches, just a petite flower. She has Brian's nose and mouth and chin dimple so far!

Nate is also a fighter. Yesterday, he decided he would rally and get that mag sulfate out of his system. He is more alert and has been trialed several times on room air. I was allowed to hold him without his CPAP in his nostrils during one of those times. He is sooo cute, my nose, I think, and still Brian's big full lips, and big chubby cheeks. He weighed 3 lbs 9.8 ounces, 16 1/2 inches. And looks so different from Chloe. Hopefully he will be off the CPAP today or tomorrow. He HATES the nasal prongs!

They both seemed to recognize and be calmed by my and Brian's voices. When I was able to hold them with all their lines and wires, they just snuggled right in, staring into my eyes. It is the best thing in the world. I have been so worried about them for so long, this is better than I had thought they would be at this gestational age.

Love to you all,

Leslie

A sneak peek

One of the funniest things I remember about this pregnancy was what Brian said heading for our first ultrasound. I have to frame this by saying I had a sneaking suspicion that I was pregnant with twins when I split through my size 4 pants before the pregnancy test even came out positive, started gaining a pound a week in the first trimester and could "feel" the top of the uterus pop over the pelvic brim by about 8 weeks (something not felt until 14 weeks typically).

So Brian came out to Albuquerque for Thanksgiving and I decided we should probably investigate this little hunch of mine. My first OB appointment was not until the first week in December, and who knows when the first ultrasound would get scheduled for based on the current state of healthcare in New Mexico. As we are driving down to Sneak Peek Ultrasound, he says, "well I know what I'll be doing tonight if its twins...." Curious, I asked "what?" "Taking an ambien and drinking a bottle of wine," he nonchalantly answered.

And you should have seen the shock, awe and amazement on his face in the ultrasound room when we saw Nate and Chloe for the first time!!

The Journey Begins

Well, the journey sort of began here...I was actually about 20 weeks pregnant then, but the photos seem to capture the essence of the pregnancy at that time. I was still in Albuquerque, I had just been put on bed rest and my mom had come out to help me prepare for the move to the East Coast. I wanted to try to recapture some of this experience from the beginning for everyone. Just before we left, Tasha graciously captured the moment with this beautiful photo shoot in the foothills not far from my house, with mom and Bailey.

I was a high risk pregnancy and in the care of the wonderful, very capable perinatologists here in Albuquerque. I was being monitored closely by cardiologists and neurologists for other problems associated with the pregnancy, biweekly ultrasounds, triple screens, amniocentesis (times 2), and a myriad of other tests. When I went in for a routine 2 week visit, they discovered that my cervix was shortening, later to be called incompetent, and this was grounds for immediate bed rest. We started with a minimal variety, fondly known as "house arrest," where I was supposed to just stay at home, no work, no working out, no dog walking, no grocery shopping, no nursery preparation, no lifting, etc, etc. Not too bad, except the house arrest then quickly progressed to moderate bed rest with the ever-shortening cervix which meant mostly lying down, occasionally I would be allowed to sit upright, but only for 20 minutes maximum. Pretty much limited in everything...no cooking, cleaning. So, since I lived by myself, the rest is history, I was Manhattan bound. Brian would take care of me in between classes, final exams, papers, meetings, presentations, and research for his dissertation. Bailey was eventually to find his new temporary digs in Florida with Brian's ever-gracious parents and their dog Max.

We were in the great care of another perinatologist group associated with NY Columbia Presbyterian. I chose to be affiliated with them because they have one out of 2 level IV NICU's in Manhattan and this was the closer of the two to where we lived on the upper west side. At 23 weeks, my Doctor was very concerned with my history and she thought with my cervix as short as it was I was going to deliver within the following 2 weeks!!! So, needless to say we were in and out of the OB triage, hospital admission and office visits from then on. I was upgraded to strict bed rest, which meant only bathroom privileges. I was no longer allowed to walk to the taxi to get to my appointments, she prescribed a wheelchair.

Every week I would get the morbidity and mortality reports from Brian (MMWR!!) for our week of gestation. It was all pretty devastating for me until we finally reached 28 weeks. A huge sigh of relief was heard around the state! However, if I could lay on my side for a few more weeks, I knew we would all be much better off. When I made it to 31 weeks, my doctor said this was a miracle, a huge success story since she didn't really think I was going to make it past 24 weeks when I first met her. Strong will and determination to lie still for a few more months helped me over that hurdle. It was probably one of the most difficult things I have done. Thanks to all my friends who kept me going over the phone, on email and visiting me in person, or I never would have made it. Also, Brian gave me a "weekly walk" in the wheelchair (if I had been good, he said) once the weather got warm. It is such a sad thing, but I lived for those walks, just to see the sky and feel the sun on my face and see that there was actually life going on outside my four (tiny) walls!!