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.
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.
