Monday, August 12, 2013

Here (part 2)

As stated before, there is a new and special warning for these posts as they will cover more than a birth story. So in addition for anyone who is still on the trenches, if stories about preterm birth or NICU trigger any PTSD, please skip these. As always, there will be other posts. Focus on taking good care of yourself first.

Like oh so many, when I started TTC I naively believed all babies went home with their parents after birth. My thought process went as such: get a positive pregnancy test, wait 9 months, give birth (vaginally or via c-section) and baby goes home. The whole idea that something could happen that would deviate from the norm was never considered (mainly because it was never talked about).

Then infertility hit. And as I began to follow other bloggers, I began to learn the horrible truth about the "norm." I learned that a BFP doesn't equal a take home baby. I learned that the unimaginable could happen in the second trimester and beyond. And I learned about a place that those born too early or born ill could go, where physicians and nurses worked side-by-side with parents to help these kids survive and ultimately go home. And I watched as updates on these moms and kids came in, with me watching them grow and progress.

But what I didn't understand was how heartbreakingly hard it would be to to be a parent of one of these children.

Back in February, when it became very apparent that the insurance-recommended birth center and OB/GYNs were ill equipped to deal with this pregnancy, Grey and I began a search for a hospital and an OB/GYN that could meet the needs of myself and the Beats in case the worst happened. Our goal was simple: find an institution that not only had a care provider who wasn't overwhelmed with managing Antiphospholipid Antibody Syndrome (APS) and a twin pregnancy, but also find an institution that contained a nursery that could provide the Beats with the necessary level of care in case they came early. It was then that I began learning more about neonatal intensive care units (NICUs), their structure and what to expect. 

For those dealing with a high-risk pregnancy, I recommend you take some time researching what level of care your nearest hospital can provide and what that means with respect to the country you live in. In the US, there are 3 levels, ranging from support for late preterm infants (34 weeks gestationally or greater) to very, very preterm infants (24 weeks or greater and in some cases earlier than 24 weeks). Hence it isn't enough to determine whether the closest hospital has a NICU as the level indicates what degree of care that facility can provide for an infant. Meaning that if you give birth to a child that requires more advanced medical care than the hospital provides, you very well could be spending the next few days separated from your child as they've been transported elsewhere for care. For me, I knew all too well the meltdown that would occur if that happened.

Fortunately, the university hospital where my MFM clinic resides also has a level 3 NICU. While touring labor and delivery, I made a point of asking lots of questions about the facility, hoping to gain as much information as possible. What both Grey and I learned was that the facility was new, expertly staffed and well hidden, meaning tours were not given as precautions about infection and disease were at the highest level. As much as we hoped to never visit the facility, knowing it existed and was considered excellent gave me a sense of calm.

Following the birth of the Beats, Grey and the neonatologist teams whisked the Beats off to the NICU to begin their care. Once my c-section was complete, my team transferred me to a gurney to be relocated to a recovery room. Prior to leaving the operating room, my anesthesiologists topped off my epidural with morphine before pulling the catheter, as I wouldn't be able to visit the NICU with it in. Immediately I was warned that this meant I needed to monitor my pain levels, alerting the medical team when the morphine wore off so that I could function.

Once in recovery and following my first sips of water in 12 hrs, I got my first crash course in breastfeeding, with me pumping and hand expressing those first drops of colostrum. Once those were collected in a small syringe, Grey helped the recovery room nurse wheel the gurney out of the room, navigating the hallways to a hidden service elevator. The nurse yanked out a magnetic security card and tapped it against black panel, bringing the elevator to life. Over the next few days, Grey and I would become quite familiar with this elevator, using it to reach this NICU which we affectionately nick-named "the Vault."

Let me cut to the chase and state that the Vault is unlike anything I've read from others about NICUs. Instead of having one central floor with multiple incubators, each infant is given their own room (with the exception being the much sought after twin or triplet rooms). Outside the doors, homemade signs identify each of the patients in addition to a coding card of yellow, orange or red that indicates the level of precaution that needs to be taken within each room. The uniform for the NICU nurses is of brightly colored scrub pants, cross-trainings or Dansko clogs and a colorful satchel that they use to carry a phone that is directly linked to their patients monitor and the central system and what ever other materials they may need during their shift. Instead of a somber mood, the nurses are all cheerful, greeting the parents and anyone new with a smile and compassion. Each nurse, we learned, could have up to 3 babies they were monitoring, all dependent on the degree of care their charges required. To prevent infection in the NICU, a surgical-style sink is positioned at each entrance for visitors to scrub in after performing self-screens (no one who is sick is allowed into the NICU) and a policy of applying a hand sanitizer when entering and exiting a room is strictly enforced. In addition to all of this, parents are allowed access 24 hrs a day with access to one pull-out bed for a parent to spend the night. A sibling program is in place to allow older children the ability to visit their brother or sister and family/friends over the age of 13 yrs are allowed to visit too. The patient rooms are spacious and decorated with warm tones to give a sense of ease, with easy access to breast-pumps and pump kits and mothers being encouraged to pump in the rooms. For premies, any mother who is unable to give her child expressed breast milk (EBM) has access to donor breast milk to feed her child (find more information here). Outside, there is a Japanese style garden, fitting into the theme of calm, clean and simple. In short, this brand-new NICU is state-of-the art and the university is very proud of this facility.

It was within the walls of the Vault that I finally had the opportunity to touch the Beats, study their faces and wonder aloud how something so beautiful could possible have come out of me. For being 32 weekers, it was clear that they were incredibly strong and more than one nurse commented on the size of their umbilical cords indicating that they were well nourished (I owe that one to Dr. Luke). After what seemed like mere seconds, I was taken back up to my assigned recovery room for observation. I urged Grey to stay as She-beat was ready for her first round of kangaroo care, figuring that after the 24 hr watch I would be able to jump right in to helping out.

The next day proved to be one of the most physically painful one I've ever lived through. Despite the warnings at 4 am that the morphine was wearing off (lots and lots of itching), I naively told the nurse that I wanted to start with the lowest dose of pain medication, thinking if I needed more I would simply up the dosage later.

Big mistake.

By the time the morphine had completely worn off, I was past a point of return and clearly disoriented because I wasn't use to what I was feeling. In addition to the searing pain from the incision, I was dealing with what felt like extreme constipation on top of severe bloat. My condition had worsened as expected, with me wondering if my legs would split open from the extreme bloat, but what I hadn't counted on was that my bowel would also be out-of-wack from the surgery, resulting in my whole GI tract stopping completely for the next 2 days. Because of the pain I was unable to spend much time with the Beats those first two days, which lead to extreme feelings of guilt and frustration that resulted in quite a few meltdowns. In my eyes, not only had my body failed my children, kicking them out into the world too soon, but now I was failing them as a mother too.

Thankfully, my doctors and nurses didn't allow me to stay in this state for very long. A prescription of furosemide w/ potassium chloride caused me to start peeing off a lot of the bloat, allowing me to bend over for the first time in a few days. To deal with the irritable bowel, I ingested a wonder drug called Simethicone which alleviated the constant rumbling and discomfort caused by the gas. In addition, I managed to beg my physicians for intravenous iron instead of ferrous sulfate as I didn't want my bowel to snap shut due to severe constipation. All of this on top of daily Miralax, Colace and a nice cocktail of Oxycotin w/ Tylenol got me to a point where I could function again.

Within 3 days of surgery I was ready to be discharged. All with a new diagnosis of HELLP syndrome and a number of physicians who now believed that not only did I have APS but that it really was the reason for the past 3 1/2 yrs of infertility. All I could focus on, though, was that I would be leaving the hospital without the Beats. That I would be leaving my miracle babies behind in the care of strangers. As Grey and I watched other beaming mothers being wheeled out of the postpartum unit holding their newborns, Grey and I walked out hand-in-hand fighting back tears and promised the Beats that we would be back very soon. For all the pain and despair of infertility and loss, the one thing we had both learned was how to be strong during the darkest moments.

Over the past couple of weeks, Grey and I have incorporated ourselves into the daily workings of the Vault. The physicians, residents and nurses have gotten to know us on a more personal basis, with us sitting in on rounds for the Beats and actively participating in their care. I've been very fortunate that my milk has come in so quickly, allowing me to feed them solely EBM for the time being and allowing us the ability to begin working with the lactation consultants to begin their orientation to breastfeeding.

On their end, though the Beats are not the most interesting medical case, they continue to impress the staff with the strides they make on a daily basis. Two weeks after they were born, the were both breathing without assistance, free of IVs with increases in the amounts of their daily feeds and actively gaining weight. It wasn't long before they each had the tops popped on their incubators, transitioning them into open-air cribs. A huge step forward for any premie as they are now able to regulate their core body temperature. After 2 weeks in the Vault, the Beats have graduate to a special nursery where they are focusing on growing, gaining weight and learning how to eat (who knew that remembering to breathe following swallowing was so difficult). Currently they are both learning how to eat from a bottle on top of holding up their heads, moving around and charming all the nurses. For two kids who were asked to grow up incredibly fast, they are not only meeting the challenge but setting a new standard. They inspire me daily to fight for them and be the mother they deserve.

Overall, we've been very lucky. Considering how bad everything got so quickly, I can't begin to imagine what would have happened if we hadn't had the medical staff and personal to make the calls that ultimately got us to where we are today. The truth is, all of this could have ended very badly and the postpartum appointment I had focused solely on the fact that this was not only a near-miss but also what steps needed to be taken to assess the seriousness of this autoimmune disease in regards to my health. But that's another post for another time.

For now, I'm taking each day as it comes. The best part of my day is when I get those few hours of kangaroo care with the Beats, with me holding these sweet babies close and thanking them for coming into my life. The worst part of the day is when I kiss them good night and promise them I will see them in the morning. Though some are quick to insist that having children in the NICU is the most painful thing they've ever had to face, I know all too well that though this part of the journey is hard, it's completely different from the years infertility and loss. That though there are moments where I can't keep my heart from breaking, there are still many moments of hope and joy. 

Sunday, August 4, 2013

Here (part 1)

New and special warning for these posts as they will cover more than a birth story. So in addition for anyone who is still on the trenches, if stories about preterm birth or NICU trigger any PTSD, please skip these. As always, there will be other posts. Focus on taking good care of yourself first.

Grey and I have been going back and forth on what exactly we want to share for the events of the past week. While some have no issues sharing various aspects of their lives, we are both very private people who are also dealing with a lot of family drama. As much as I'd like to believe otherwise, the truth is sharing too much is a dangerous thing for us. All that said, we ask for understanding regarding omitting certain details from our story. Though I understand that this can be frustrating, the reality is it is Grey, myself and the Beats who have to live with the consequences for any information shared.

Let's start from the beginning.

It's been no secret that since the beginning of July I've been battling hypertension and liver function issues. What I haven't been forthwith about is the degree of monitoring my MFMs have been doing since our second trip to L&D that identified this issue. What quickly was becoming baffling/concerning was that though my labs were indicating preeclampsia, I was lacking a lot of the other symptoms. Hence my MFMs were being vigilant, warning me that things could quickly escalate.

And this is where I failed. Even with the warning of packing a hospital bag, I wasn't prepared for how fast all of this could progress.

Wednesday July 25th, I awoke with a start realizing I had overslept and was running late for my weekly appointment. Because of some issues with iCal, Grey overslept too and wasn't able to get ready in time to get out the door. As I kissed him goodbye, I looked him in the eyes and assured him that this was just a routine appointment and that I would be home by 10 am.

Following a long wait at Phlebotomy, I raced over to my MFM appointment to start the day with a NST with Nurse J before meeting with the physicians. During the NST, the Beats were rocking, kicking and jumping around, but my blood pressure was far from good, spiking at 134/82. Though not considered in the range of hypertension, it still caused all of us to pause. When the NST was completed, I was taken back to the exam room and my blood pressure was rechecked. Though lower at this point, it was concerning that it was fluctuating as much as it was. Despite this, I figured we were still in the monitoring mode as I had been experiencing similar trends before. What I wasn't prepared for was that the labs would come back indicating that not only were the markers for liver stress skyrocketing, but so were markers indicating kidney stress. And just like that, a bed was booked for me at Chateau L&D.

Following the appointment, I was given 30 minutes to wander down to the hospital cafeteria to eat some breakfast and begin making plans. I learned later that the second I texted Grey the news, he immediately packed our laptops and proceeded to run to the bus stop that was 10 blocks away. In the meantime, I made arrangements for Jaxson and Daisy to be watched and alert those we knew in the area of what was happening. I still remember the texts from MissC simply stating "call me," with her trying to piece together what had happened within the 24 hrs since I saw her and Cooper. After all, I looked healthy. What had gone wrong?

Following breakfast, it was back to the clinic to receive the first of 2 shots of dexamethasone to promote maturation of the Beats's lungs. While there, a new nurse named Nurse T talked me through tentative plan of getting me into a flex room where they could start magnesium sulfate in hopes of bringing my blood pressure down. Though usually used to delay preterm labor, magnesium sulfate is also effective at treating this aspect of preeclampsia. The first 20 minutes of that medication were the worst, with the veins in my arm burning from the initial bolus, but after that it was manageable, feeling like I was lying on a bed of hot coals. In addition, I was prescribed restricted bedrest, all with the hope of keeping the Beats in utero as long as possible.

At 12:50 pm I was wheeled into what would be my new home for the next few days. Grey and I started marking the course of events with the different nurses who were assigned to us as the hours became a blur and it was hard to distinguish when exactly certain events happened. Each nurse we had during this period was amazing in her own way, ranging from wicked senses of dry humor to being incredibly sweet. It was funny how each one came into being in charge of my care during the moments we needed them most, helping us make decisions about the next steps, giving us reasons to laugh and even helping us encounter the unknown.

By Friday afternoon it became clear that the Beats would be delivered prior to the 36 week mark, but Grey were hoping that we could get them a few more days. By that evening, though, we were told that I needed to prepare for the possibility of a C-section in the morning. Grey and I held tight to one another as we met with one of the neonatologists to talk about the realities of raising 32 week twins and what their time in the NICU would look like. It was during the rare few moments we were alone together that I allowed to tears to come. Despite the fact their outlook was potentially positive, the reality was that things could go very wrong and I was overcome with guilt, anger and sadness that my body was once again failing our children.

At 1 am I was awoken by our nighttime nurse and told I needed to stop all liquids as it was very likely I would be going in for surgery in the morning. As she gave me the rundown of what to expect, she could see I was in shock by the news. To calm me, she sat by me and proceeded to tell me about all the craziness that was currently happening in L&D. Apparently the floor was beyond capacity, with only those who were actively laboring or in an emergency situation not being turned away. I'll admit, we both had a good laugh about the woman who refused to leave after getting this news and instead had been pacing the halls for close to 10 hrs hoping to get her body into that final stage of labor. "We keep telling her that home will be more comfortable, but she refuses to believe us!" she exclaimed. We also talked a bit about the different cases the university hospital sees, as it serves a large population ranging from prisoners to well-educated citizens with each case also ranging from being very straight-forward to incredibly complex to a flat out emergency. Before she left me she told me that though I was in serious condition, we were actually in a good spot as the doctors had had time to plan and prepare. And she commended me and Grey for being so active to setting the stage to allow for the best possible outcome. It was those words that allowed me to sleep for the next 5 hrs. It was those words that I would hold on to for the next 5 days.

At 7 am my primary MFM came into the room with a team of residents and told us that I was going to be prepped for surgery at 10:30 am. In addition to my liver and kidney biomarkers still being on the rise, my blood pressure was now officially in the hypertension range, I had gained 20 lbs in 48 hrs due to an accumulation of fluids and that my fuzzy thought processes were worrisoome. It was then I was diagnosed with an atypical form of preeclampsia called HELLP syndrome. Though I had zero protein in my urine (they had done a 24 hr catch) and my platelet count was okay, they weren't willing to wait. After answering a few questions from Grey, the decision was made to go forward and the team left us to make final phone calls to family and friends to alert them to what was happening. Grey was also given some pink scrubs to wear in the OR as the usual blue ones were being stolen and they wanted to discourage future temptations.

At 10:30 am, I was given an additional IV and then wheeled into the OR. Sitting on the OR table, a 38.5 week pregnant anesthesiology resident attempted to insert an epidural without success. The attending anesthesiologist proceeded to take over and while successfully inserting the catheter told me about how he was actually on paternity leave and had just welcomed a son 10 days before. The only thing I could think of was that this situation was an infertile's worst nightmare come true, but somehow I managed to bite my tongue and allow them to do their jobs while I smiled.

Grey and I had talked previously about what we wanted to happen if a C-section was necessary for delivering the Beats. I knew I didn't want my arms strapped down, but as I have a history of fainting from overly bloody/painful looking situations I was also okay with them leaving up the drape. Grey wanted to see though and the surgical team happily accommodated him, only requesting that he not interfere with what they were doing. Numb and nude from the neck down, everyone began to work with me only feeling tugging and pulling the whole time. Suddenly I heard excitement in everyone's voices and Grey's eyes began to fill with tears. Eagerly snapping photos and bouncing like a small child, Grey looked at me and said "He's crying. Cristy he's crying!" meaning that Beat A was able to breathe on his own. Within a couple minutes later the same excitement and tears of joy returned with the arrival of Beat B.

Born on July 27, 2013 at 11:20 am PST, via Cesarean section

Beat A (He-Beat): HTC. Weighing 4 lbs 5 oz
Beat B (She-Beat): EMC. Weighing 3 lbs 7 oz

Both born into the world with an amazing set of lungs. The most beautiful noise I've ever heard.

As agreed upon, Grey left me to be with the Beats and oversee what the neonatology teams were doing. The original plan was once prepped for NICU, the team would bring each Beat over for me to see before taking them down. That plan was immediately scratched when I heard a loud clang and a gasp. Within a couple of minutes I learned that one of the scrub techs had fainted, nose-diving into one of the side tables. As the team split, with a couple of nurses working to assess the situation and call a team to get her down to the ER while another nurse stepped in to assist the MFMs with completing my surgery, the NICU teams made the decision to bypass me seeing the Beats and to simply get them into NICU. Grey came over to me with a look of what-do-you-want-me-to-do, and the second I mouthed "Go" he turned and joined the NICU teams. About an hour later, I was sewn back together and transferred into a L&D room for close monitoring and observation. Over words of congratulations, my primary MFM warned me that it was likely my condition would worsen before it got better. "But we're not going to let anything happen to you" she promised.

And with that began a strange next few days, fueled by physical pain and uncertainty coupled with joy and hope.

To be continued . . . .
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