10 Survival Tips for the NICU Mom

I gave birth to my twins at 38 weeks into my pregnancy, which is considered full-term for twins.  And much to my surprise and shock, I got the twin birth I had sort of "dreamed of" after what felt like a very difficult pregnancy compared to my singleton experience, and having had preeclampsia in this pregnancy - still don't even know how I managed to work at all or care for my then 4-year old (though I admit, many Netflix shows were watched and I pulled David early from his Pre-K-3 program as I just couldn't keep up any more).  On April 28, 2017 I gave birth vaginally to twin boys - Twin B, being delivered breech!  (A double whammy of a vaginal birth for one twin and c-section for the other was my worst nightmare, so I was thankful to avoid surgery)  We were truly so lucky to have had such a positive birthing experience and wonderful doctor delivering Adam and Matthew at NYU Langone Hospital.  However, just a few hours after their birth, one of the nurses in my maternity recovery room noticed a "shaky" Matthew, who she discovered was experiencing low blood sugar levels.  I knew that having twins was going to be a roller coaster, and even just carrying them to full term to deliver them safely was miraculous and an endeavor for me, and I even knew there was a chance that we could experience some issues that are not typical in a singleton pregnancy, because twin pregnancy is always considered high risk.  As one of my doctors put it to me during one of my sobbing sessions in his office to discuss my high blood pressure during a weekly visit: "a woman's uterus was not really designed or meant to carry more than one baby, and so everything about it is unique."  Boy, was he right - I had no idea then. 

Everyone who's closest to me knows that when I don't know something or am experiencing something new in my life I react by researching and reading about it to gain more knowledge on whatever the thing is - that's just my way of dealing with the unknown to gain some control.  And it was no different as I was preparing to become a twin mother - I had read loads of research in journal articles, published books from medical practitioners and other twin moms...but nothing in the world could have prepared me for my first experience as a mom of multiples.  I had to deal with one of my twins remaining in the NICU for treatment regarding his low blood sugar levels, while being sent home with the other twin.  I didn't know how to react and was really devastated about it all - ashamed, disappointed in my own body, unsure of how to care for my 3 kids with one in the hospital, all while still trying to remain hopeful and faithful that things would end up the right way.  If you're interested in reading my twin birth story and the details of Matthew's stay in the NICU, you can read all the details in one of my previous blog posts - click here.  However, this entry is not necessarily about our story - it's about how I survived life as a NICU mom, especially difficult while dealing with another twin newborn at home, a spunky 4-year old, a full-time working husband, and postpartum twin mommy.  Nothing about nearly a month as a NICU mom was easy or anticipated, but thankfully our tough guy Matthew did manage to regulate his blood sugar levels with the help of the amazing doctors, nurses and other medical staff at NYU, and made it home to rejoin his twin brother and rest of the family!

My hope in sharing these 10 Survival Tips for the NICU Mom is to help another NICU mom like myself navigate that life and know that they are not alone in the journey!  And in no particular order, here are my top 10 tips:

1.  Make a schedule for yourself you can commit to
I wished to be able to be in that NICU sitting down next to my baby every second of every day while he was there, but the reality was that there was a newborn and 4-year old boy at home who also needed my love, care and attention - but I won't hide that I cried numerous times in a given day and wondered whether or not any one was holding my sweet Matthew there in the NICU.  It was such a challenge for me to get downtown to see baby Matthew in the NICU at NYU Hospital each day, especially because I was trying to breastfeed the twin at home and pump to bring breastmilk to the hospital.  However, one thing I could commit to was going to see the baby in the NICU every day at 11am - rain, shine, traffic or not.  Everything else in my day could fluctuate, but every one knew that at 10am mom was leaving home to travel to the hospital - this made it a bit easier to get my husband and parents to support me with helping with the kids at home, traveling to and from the hospital, feedings, etc.  Find a time that works for you, stick to it every day, and share it with everyone on your support team!

2.  Take pics & videos often

When Matthew finally had his feeding tube removed in the NICU!

I didn't do this enough - at the time I thought I'd never want to see a picture of my baby with all the needles around him, or the feeding tube taped to his cheeks, but I regret not taking more pictures or videos of him because I cherish the ones I do have now SO much, and it's an incredibly fulfilling experience to look back now at that little baby boy who dealt with such a rough welcome to the world, but was still just a sweet and adorable baby.  Thankfully, my husband took tons and tons of pics and always sent them to me when I wasn't there because we could never really go together as one of us needed to be home with the other 2 boys.  So make it a point to take pictures and videos in the NICU often!

3.  Write down questions & log your observations daily 
I had a thin notebook I kept with me everywhere while I was a NICU mom - I would bring it with me to the hospital and would keep it by the phone at home as I called in every 3-4 hours to ask about Matthew while I couldn't physically be there.  (Those NICU nurses ALWAYS took my calls!) . I would write my questions  on one side of the notebook (usually while on my way to the hospital) that I wanted to remember to ask the nurses or doctors about the baby and then my notes and personal observations about the baby on the other side (things like how many ounces he drank, how long he stayed awake, his blood pressure, etc.)  Having my own log in this notebook was a tool that helped me reflect with the medical caretakers at the hospital on Matthew's progress - also, it was such an emotional time for me, that it also just ensured I wouldn't forget things, so write it down!

4.  Have your own support team to check in with every day
Make sure you have at least one other person you can lean on for support - whether it is to care for and watch your other children, help you prepare a meal, remind you to take a shower (seriously, every new twin mom needs this reminder)...just have a few people YOU, the NICU mom, can check in with each day - even if it's because you just need to cry or tell someone how you're feeling.  I didn't need an expert around me, just someone who would LISTEN to me.

5.  Get to know everyone at the hospital
The amazing NICU nurses were the individuals I got to know the most throughout my experience - and they are amazing...they can do the toughest jobs like collecting blood from small baby veins and then cuddle and show love to your newborn while singing to them.  NICU nurses are the toughest and kindest souls I've ever met!  I made sure that during our time at the NICU, I got to know everyone who was a part of my son's journey and process to getting healthier and better - the attending physicians, the residents, the occupational therapists, the endocrinologists, the physician assistants, the receptionist, the doorman, the social workers, etc.  Don't be afraid to ask to see or meet these individuals when you are in the NICU - they will make some time to be available to speak to you and provide you with their work number and email.  I couldn't be there every day for the "morning rounds," where the entire medical team would go around to report and check in on every NICU baby and set their plan for the day, and so I made it a point to check in with at least one of these individuals whenever I was in.  Knowing your child's team is important, and you are also very much part of it, especially when you get to know everyone working to support your baby.

6.  Know that it's ok to disconnect
At the time, most people didn't really know one of my twins was in the NICU for those first few weeks of life.  Disconnecting from social media, phone calls, and texts was helpful to me because it was emotionally draining to explain to people around me what was happening and to admit, mostly to myself, and them, that I wasn't sure if the baby would be ok.  I'm not suggesting that NICU moms disconnect from the outside world completely, but what I am saying is that if you do feel like you don't want to answer a call or respond to a message, then you should know that is totally ok.  There will be time to get back to everyone in the future, and they will definitely understand!

7.  Talk to other NICU parents
There were many people I met in the NICU, and it was the hope, positivity, stories and kind words in each of those other NICU moms and dads that really got me through that time in my life.  So make it a point to get to know some of the other NICU parents around your child, find out where the "parent lounge" is so you can grab a coffee and chat with someone - and if you don't feel like talking, a smile will really go a long way. 

8.  Bring things from home for your baby
One day after I just broke down in uncontrollable tears while holding baby Matthew in my arms in the NICU, one of the nurses just came over and hugged me and kept asking me what would make me feel better in that moment.  And I admitted to her that I just wished my baby could be home with the rest of us so he can sit in the twin pillow I had bought or wear some of the cute newborn clothes I had bought and planned.  And that's when she encouraged me to bring the baby anything to wear from home that I wanted, as long as it wasn't pants or a one piece as everyone needed access to the baby's bottom half, due to all the wires, and needles in his heels for sugar level checks every 3 hours, etc.  Bringing in Matthew's own shirt, own hat and own blankets gave me some comfort in my time as a NICU mom.  I even ended up bringing rosary beads and a small toy to keep by his bedside that made me feel like a piece of home was with him when I wasn't there.  Everyone knew baby Matthew and called him by his name because of the newborn hat we had made with his name on it for him - it brought me to such a happy place when I would meet someone who just knew Matthew and called him by his name.  So don't be afraid to ask or simply bring in a few of baby's own  personal items from home.

9.  Bond with your baby as you would if you were home

This was a tough idea for me because in my mind, my baby was coming home in "a day or two" as soon as his sugar level was regulated as all the doctors and medical staff kept insisting he was an otherwise perfectly "healthy" child.  But 2 days turned to 3, then 3 to 4, and we got all the way up to 17 days in the NICU before things really started getting better.  I was afraid to hold my baby in the beginning - would I tangle up all the wires around him, could I move all the cords to change his diaper without hurting him even more, would I hurt his little feet that were usually always blue due to all the heel pricks?  Finally, I worked with the amazing and careful nurses and asked them to just show me how best to grab the baby and where each of those wires went in the case they fell out.  We did skin-to-skin every time I was there, as crowded as a NYC NICU room is (you can imagine with real estate here being a high commodity).  Holding my baby, changing his diaper, swaddling him myself, etc. were all the things that I found helped me feel better as I got to bond with Matthew, and I'm sure made him feel better too.

10.  Focus on gains & Celebrate Improvement
Some days were worse than the ones prior, either because of a dip in sugar levels again, or needing a feeding tube because of all the medicine making baby too lethargic to feed, but being a NICU mom calls for being a warrior and focusing on and celebrating even the slightest, smallest gains because they can have a tremendous and positive impact on such a small newborn baby.  Noticing that baby spent a few more minutes awake during a feeding, or that they smiled at you, or that they're able to do something like breathe on their own are all major wins!  Take time to acknowledge baby's gains and celebrate them with the support team around you and your baby in the NICU.