Surviving the NICU (and supporting NICU parents)

The intense smell of disinfectant, the uncomfortable chairs, the sound of an alarm going off because a baby just stopped breathing for a second and the overwhelming silence paired with the sound of the daily routines of busy nurses. Over our 41 day stay, I got to know the NICU of Netcare Femina Hospital VERY well. 

I have very deep and tender memories of our stay in the NICU. Almost like Stockholm Syndrome - I didn't want to be there, but being there made grew in me a deep respect for nurses (they work VERY hard), it made me appreciate the fragility of life and it made me part of a special group of mommies who know what it is like to leave their babies with complete strangers, but know the tenacity of a little person that learns things faster than they're meant to. It is still not easy to think back over this time, but my hope is that my story would encourage others and give them strength to get through. 

(Just a bit of context: Eli was born via emergency c-section at 33 weeks due to preeclampsia. I was not prepared at all, and he was born within 16 hours after finding out I had this condition. I know there are MANY people who have experienced much more traumatic circumstances in the NICU, but  hopefully this could still be encouraging and relevant for you.)

So if you are in the NICU right now, here are some helpful tips to surviving your stay in the NICU:

• Rewrite your story. We have this picture of how we will give birth, share these precious family moments and get to breastfeed immediately. We place the greatest value on these moments of bonding. I had to accept that this was no longer MY STORY, and that my story was unique and I would grow character in different ways through the experience. I also realized although I felt out of control, I did have control over my attitude, and I could still be intentional in spending time with Eli once he was home. 
• (Try to) look on the bright side. ​​One of the (very few) advantages of having your baby in the NICU is that you have time to recover without the pressure of learning to breastfeed, getting up to change nappies etc. I also had time to get the house ready, make freezer meals and by the time Eli came home, I was (kind of) prepared. 
• Set yourself realistic expectations. I made the mistake of doing a lot of research on how long a 33-weeker would normally stay in the hospital, and it gave me hope that maybe Eli would be home quick. This only left me feeling constantly disappointed. The most helpful advice I read was that you should be patient with your baby - the reality is they are still supposed to be baking in your tummy till 40 weeks, so anything they can do before then, is just a bonus. Be patient, as hard as it is, and try to be grateful for the small victories. 
• Don't compare your baby to the other babies. Every child is different and develop at different paces -  you will this realize more and more, every day that you're a mom. Celebrate YOUR child and every little milestone they reach. You were gifted with a unique individual - celebrate that!
• Don't feel pressure to be there 24/7. ​I chatted to a few moms who felt bad they weren't there the whole day long. I physically couldn't be at the hospital for longer than 5-6 hours before feeling exhausted, sore (from uncomfortable seats) and desperately wanting to be resting at home. Don't put pressure on yourself. The reality is, there is little you can do for your baby at the moment (unless you're breastfeeding) and your baby is in very good and loving hands. Take the time to rest, because once you have to start breastfeeding they will want you there all day, and once baby is home, rest will be a distant memory!
• Don't be afraid to ask and stand up for what you want. It took 10 days before I did skin-to-skin kangaroo care, and when I finally asked, the nurse was surprised that I hadn't done it yet. I was not impressed, but learnt that I should speak up and ask questions. It is your child after all. Be confident and ask questions. 
•  Ask what you can do to help. I was surprised to hear that many moms in the NICU don't want to do much for their babies, and many nurses actually had to ASK the mom to Kangaroo Care. (It is VERY beneficial for a baby's development and there are great results showing these babies recovering faster - Google it!) Also, ask if you can help with certain routines like changing the nappy, cleaning eyes etc. Unless your baby is really fragile, the nurses will welcome your request as help.  The nurses may do some things without you, try not to take it personally. They have a busy schedule and many babies to take care of simultaneously. 
• Welcome any help you can get. If people want to bring you food, clean your house, give you a lift, come visit - just say YES! Don't try to be a hero, there is no prize for handling difficult times the best - what you're going through SUCKS and you need all the help you can get. See it as an opportunity for the other person to grow :) 
• Find other ways to fight for your baby. This was quite a tough one for me as I didn't feel like Eli's Mama for a long time. I felt so helpless and was only allowed to start breastfeeding him at 5 weeks. I started to realize that there were a few things I could start to do for him. For example, praying for him! I had a little book called The Power of the Praying Parent by Stormie Omartian and I would sit and pray over Eli. I also took the time to hand stitch a mobile for above his cot, and make other for his room. It made me feel like I was doing something for him.
  
• Deal with the trauma. Without being too melodramatic, going through a NICU experience is very traumatic, and can take a long time to deal with. Talk through it, even if you need to see a professional. These emotions don't just disappear if you don't deal with them. Find someone you trust on whom you can offload your fears, anger, disappoint and sadness. Again, don't be a hero. What you have gone through/are going through is not easy and highly draining. 

​One of the hardest parts of being NICU parents, is how isolated you feel. People don't understand, and couldn't possibly, but here are some tips & insights if you ever have some friends or family going through this: 

• Offer to help. Unfortunately there isn't much you can say, but there is a lot you can do. I was blessed with amazing friends who brought us about 3 weeks worth of meals. Offer to clean their house, drive them to the hospital (c-section), babysit the other kids (if there are) etc. Once again, don't ask "let me know if there is something I can do." People rarely take you up on that. Rather SAY, "I'd love to come clean your house, what day can I come?" It takes the ball out of their court. 
• Stop asking, "so when is he/she going home?" I HATED it when people asked me this, because it was my million dollar question. All I could think of was when Eli would be coming home, and being asked that just frustrated me more. Rather ask how it's going today. 
• Celebrate with us! ​Eli was born 2 days before our baby shower, and one of the most disappointing things to come to terms with, was that nothing went as planned and it didn't feel like we had the opportunity to celebrate his life. Make a big deal of the fact that baby was born, visit them in hospital, send a gift, flowers. Whatever it takes to make them feel excited about becoming parents. 
• Don't forget. Gosh, people would ask, "oh, is he STILL in hospital?" YES!! For the last flipping 5 weeks! People tend to be there for you in the first week, and then life goes on, while your life are completely upside down. Don't feel bad to contact them a lot. They may not respond immediately, but let them know you care and you haven't forgotten that they're going through a hard time. Go have a coffee with them in hospital! 
• Be tactful and cautious when baby comes home. I was very excited for people to meet Eli when he came out, but I was also so desperate for alone time and to settle in at home as a family. Premature babies also normally have more sensitive immune systems, and need to be protected from germs for a while after coming home. PLEASE DON'T visit if you're sick. DON'T take your snotty kids to visit. DON'T feel bad if you are asked to disinfect your hands. Better yet, disinfect without being asked. ​

Hopefully you will never need to use the information in this article, but obviously this is quite a common occurrence and it's something that needs to be spoken of more. 
Please feel free to comment with any questions or maybe if you just want to share you story! 

Charlene x