September: NICU Awareness Month

Most people think of September as back-to-school time, the beginning of football season, fall is here, and that means holidays are right around the corner. But for me, the last two years I have thought of September as the kick-off to "awareness months" for my sweet family. 

September is NICU awareness month. October is pregnancy and infancy loss awareness month. November is prematurity awareness month. And December is TTTS (twin-to-twin/triplet-to-triplet transfusion syndrome) awareness month. Phew. That's a lot of awareness to spread over four consecutive months. I hate to admit but in 2015 the wounds were much too fresh to really acknowledge any of these important causes other than to visit and thank our NICU nurses in September. I did decide to rally around awareness for TTTS in December because I felt like I needed to scream from the highest mountain about this horrible disease. 

2016 came and went with me starting so many essays about the various topics but again I just wasn't fully ready to share our experiences. 

I decided with the start of my blog, I want to be fully transparent with my readers about my amazing miracles, emmy and elle, and their angel sister, ashley. This post will be the first of a four part series about the different awareness months. Each month I have an idea of what I want to focus on but they are still a work in progress. I jump back and forth between each essay because each component, or month, is its own important piece to the puzzle that makes up my family's life. 

I want to thank everyone in advance for your kindness while reading the essays. The posts will be the most personal pieces I have ever written and ones I think will also bring me the most pride because I will not only be celebrating my children. I will be celebrating the fact Dave and I are stronger than ever after surviving the most challenging period in our marriage and honestly life. 

So to kick off the series about awareness months I want to dive in to the world of the neonatal intensive care unit. Where angels, called NICU nurses and doctors, work on earth to protect and serve our world's smallest, fragile, but most fiercest beings. 

I will never forgot the day I found out I was expecting triplets. It happened to be in September of 2014 and it also happened to be the only doctors appointment Dave ever missed. I remember stopping the sweet ultrasound tech after she told me I was having not one but two babies. I needed my mom and she was waiting patiently in the lobby with her fingers and toes crossed for good news confirming a healthy heartbeat. Well, turns out there were three healthy heartbeats. Once my mom was settled and the machine lit back up, the ultrasound tech had to change her monitor again from Baby to Baby 1 and Baby 2 to Baby A, B, and C. The tech turned up the volume and their heartbeats sounded like the sweetest rock band playing together. 

As you can imagine, I was in total shock. I will honestly never forget this life-altering moment. Especially the look on my mother's face. When she entered the room she was so nervous and then I screamed out, "I'm having twins!" She held my hand and we just giggled and exchanged nervous glances as the tech started her sweep. Once it was announced it was actually triplets, my mom dropped my hand, sat down on the bench beside me, all color drained from her face, and just asked, "how?!" The tech followed up with, "well let's scan for a fourth to make sure no one else is hiding in there!" At this point I fell back on the examine table and started imagining myself with a literal litter of kids. How did this happen? Well, I hit the one-in-a-million lottery of spontaneous identical triplets. I like to joke we had one very overzealous egg that decided to split three times. 

A lot happened during my relatively short time being pregnant. I will delve into further details in future posts but once you find out you're having multiples, you are almost immediately faced with the possibility of your children spending time in the NICU. Some mothers of multiples are extremely lucky and are discharged with their babies and get to leave the hospital together.  But when it comes especially to cases of identical multiples, families will be facing the reality their babies might be born too soon. 

Prematurity is not the only reason babies are in the NICU. Several of my friends had children in the NICU that were considered full term and even over due. Sometimes a baby has to stay 85 days, like our elle, to grow and learn to do things on her own such as breathe consistently and eat. Other babies might have to be observed for a few days due to low blood sugar and various other reasons. Parents could have knowledge prior to birth their baby has a complication(s) or their baby is whisked away shortly after delivery. The NICU changes people either way, regardless of circumstance and length of stay. I remember one of my sisters' dear friends spoke with me before the girls were born because her daughter was born at 28 weeks and spent her first weeks of life in the NICU. She said, "you will not be the same person as you were when you entered the NICU as when you leave the NICU." I did not realize it then but those were the most true words ever spoken to me other than my husbands marriage vows.

This is our village. The top are our two primary nurses, Angela and Janet, with sweet Samantha who gave us our initial tour and also took care of the girls. Bottom left is our MFM doctor and ultrasound tech who were quick to diagnose ttts and get us scheduled for surgery with the best doctor in Miami, FL. bottom right is our absolute favorite doctor, our OB, who guided us through our entire pregnancy and loves to see the girls in his office. 

I like to consider myself part of the fortunate club faced with unfortunate circumstances when we found out the girls would be arriving early. I was having weekly appointments with not only my OB but also my MFM due to the high risk nature of my pregnancy and since I had already had surgery to correct TTTS. We found out when I was 24 weeks along that my cervix had thinned considerably and I needed to have steroid shots right away to help develop emmy and elle's lungs if they decided to make their grand entrance with their angel sister anytime soon. It was an extremely scary situation but with a pregnancy that kept throwing curveballs, I cannot say with any honesty that it was unexpected. My amazing OB started to talk with us about the NICU after my second round of steroid shots. He asked me if I knew anything about where my children would be receiving care if they were born early. Since my husband and I are first time parents we were quick to say we had no clue what to expect from the NICU. The best thing (and what I strongly recommend to any parents who are faced with a similar circumstance) my OB did was to call the NICU and set up a "tour" for us. I use the word, "tour," lightly because it is not what you expect to be doing before you give birth. All the other first time moms that I know were taking tours of the birthing units and maternity wards. We were being introduced to what was going to be our very near future. The land of tiny babies and worried parents. 

Arriving to our "tour" seemed completely surreal but we were met with a smile from one of the nurses, Samantha. She had already been briefed of our circumstances that had led us to this stage in my pregnancy and was extremely caring and compassionate as she walked us through the unit. She talked to us about how the unit was set up with babies being assigned to a "pod" and how there were daytime nurses and night time nurses, respiratory specialist, physical therapist, and the list can go on and on for the many people who would be taking care of our girls. She then brought us to a baby who was born at 25 weeks and told me, "if you were to go into labor and deliver your girls today then this is what you can expect your baby to look and act like after birth." I stared down at this tiny little creature with her eyes covered and skin almost translucent. I did not even know what to say until Samantha spoke and said, "she is a fighter and your girls will be the same way. You will be shocked to see how strong our tiniest babies can be." See folks, that's what makes NICU nurses the true superheroes living amongst us commoners. She knew exactly the words to use to give us hope. 

Hope is honestly the only thing we were hanging on to when another scare landed me permanently in the hospital until the girls big debut. The night our triplets were born I remember looking around as they laid me on the operating table and I saw a gallery of faces behind surgical masks waiting patiently in the wings to sweep in and grab the girls as soon as they were able. I will never forget our first night nurse, Kristina, who witnessed my delivery and I can only imagine the train wreck that was me after laboring for 40+ hours (26 of those hours on magnesium) that ended with an emergency c-section. Kristina introduced me to emmy and elle when I was wheeled in from recovery after 2am. She calmly walked me through our new life in the NICU by telling me exactly what was happening and letting me know the girls were both "fiesty. And fiesty is a very good thing to be as a preemie."

Holding elle for the first time when she was five days old. Thank you nurse Kayla for making my dreams come true to hold my children. 

I could write a love letter to every nurse who cared for our children. They all did something indivually remarkable for us by not only keeping them alive but by keeping Dave and I sane too. The NICU is a rollercoaster and that is the true message of this post. My hope for all of my readers is if they are ever faced with a similar story of having a child in the NICU they can look back and gain some insight on what their life will be like after delivery. Remember you are your child's advocate. Ask questions and ask to help with your child's care in all the ways you can during their stay. Even if the only "help" you can provide at first is to take their temperature and change their diaper. Don't feel like a visitor. You belong with your baby and the nurses and doctors truly want you there too.

The babies are the ones who write their own story. Don't think there is a set path in the NICU. Sometimes you will feel like your child has made vast improvements just to be told the next day they had a setback. The hardest questions people continuously asked me was, "when will the girls get to come home? Aren't they big enough yet to leave the hospital?" At first these questions really made me upset because we honestly did not know and had no clue on what to expect. In our case with micro preemies they usually say they hope they are home around their original due date. We were fortunate emmy and elle both came home before but that is not always the case. Always remember it is completely okay to tell people, "we do not know" or you do not have to share anything at all. It is your child and you get to decide what you want to reveal about their start. 

My most important piece of advice to anyone who has a child in the NICU is to lean in to the support that others want to give you and your family during your time of need. We were really lucky to have an amazing tribe. One of my best friends took the afternoon off work a week after the girls were born. She brought me lunch, drove me to the hospital since I was still recovering from my c-section, and sat with me for hours until Dave was able to join after work. She was genuinely excited to see my tiny babies and it made me so happy to show them off. I was beyond scared their fragile state would terrify anyone who saw them. She made me realize my fears were not reality and after that visit I was much more open with sharing updates about the girls with others. I could write a book about all the amazing things people said and did while the girls were in the hospital but just having people who listen and address your fears with care and sympathy makes the world of difference. 

PTSD is also very common among NICU parents. We witness a lot of joy but also a lot of heartbreak while in the NICU. I will never forget the babies who passed away. These memories are why I hold my children a little tighter each day and why I can be seen as extremely overprotective. I feel like other NICU parents understand my feelings because you can never forget seeing a family say their final "goodbye's" and "I love you's" to their child and wrap their beautiful, tiny body in a blanket one last time. The nurses were like personal therapist ready to talk and answer any questions I had to hopefully help ease my mind. Never feel ashamed to reach out for help with your PTSD. 

Nurse Kayla was beyond patient and loving as she carefully placed emmy in my shirt for kangaroo time. I would sit for hours while taking turns holding the girls in the NICU. 

Having a child, or in our case children, in the NICU is a life changing event. A mother will truly never get over having to leave their newborn in someone else's care. It goes against all natural instincts to protect and tend to every need of your baby from the moment they enter the world. It's truly devastating to be discharged from the hospital and see other new mothers waiting to be picked up by their spouse with their newborn tucked safely in their car seat while you know your baby is hooked up to monitors and possibly even machines a few floors above. I honestly feel that's why God made NICU nurses because He knew a special kind of person would be needed to help families cope with the grief of a shortened and/or traumatic pregnancy/delivery. Don't get me wrong, NICU doctors are amazing too. The nurses though are with your baby 12 hours per day and I saw them as basically a surrogate parent while we were away. I grew close with many of the nurses during our stay and I am so thankful for avenues such as social media so they can continue to watch our girls grow and develop into beautiful little ladies. I know I am not alone with feeling like I can never say thank you enough to the NICU doctors, nurses, and  specialist for saving the lives of my children and countless others.

Nurse Janet was one of our primary nurses. Many hospitals have a primary nurse program where a parent can ask a particular nurse if they can be assigned to their child each time they are at work. I strongly encourage all parents to inquire if their NICU has this program. Nurse Janet was so caring and amazing during our entire NICU experience. This picture was taken the day before Emmy was discharged from the hospital. Janet was the first one to talk to me about how elle was going to need more time before she would join emmy at home. It was a hard blow as a parent to leave one piece of your heart at the hospital but to know they are being left in the hands of these amazing people does make a hard situation easier. Janet also reminded me to take pictures often of the girls during their stay. I never shared them publicly before but I feel like it is important now for everyone to see a small glimpse of what life is like when you're in the NICU day in and day out with your child or in our case, children. 

The NICU is where miracles happen, love is abundant, and tiny babies fight for their lives. It is a place of immense joy and complete sorrow. The NICU might be the first chapter to your child's life but it definitely does not define your baby. My hope is this post serves its purpose to bring awareness to the neonatal intensive care unit. Like all my posts, I want to see it evolve and if you are a NICU parent who has additional advice which can help future NICU parents then please feel free to reach out to me with your thoughts. No one ever imagines becoming a NICU mom but it's the most supportive community and because of the dedicated NICU staff I have my survivors, emmy and elle.

(Thank you to everyone who read this small novel- your support with part 1 of the awareness posts means the world to me.)

Thank you to nurse Courtney who made it possible for me to hold both of my girls together for the first time. They had missed the snuggles. 

Dave and his sweet, little ladies