I rarely get super personal on blogs but it is the eve of my oldest son’s birthday and I am thankful he is in bed upstairs, alive, and healthy. I sit with a flood of emotions that have probably never been properly processed and I thought others could benefit from my experience. Here is our story. Let’s fast-forward past the baby being born and to the transfer to Riley Children’s Hospital almost two hours away. That was approximately 30 hours after birth. There was a blizzard, the highways were being shut down, and I left the hospital early. Thank goodness my mom had a 4-wheel drive vehicle that she allowed us to borrow.
I remember bits and pieces of those first few days. No sleep, lots of information, and a doctor telling us to read a binder of information that would be the last resort. He returned a short time later with paperwork to be signed allowing the information in the binder to take place. It was scary, time sensitive information, therefore no time to research so we just had to pray the doctors knew what they were doing. A short time later my sweet new baby was placed on ECMO, a life support system, to allow his heart and lungs to learn to work properly.
Surviving The NICU- What I learned and the point of writing this blog!
Being a NICU parent can be very lonely. Friends and family can be there, but they don’t know what you are going through. It is a fear and pain that cannot be put into words. I remember my mom and aunts driving five hours to see us. My Aunt Janie was one of them. She had spent a very long time in the NICU with my cousin twenty-five years prior. She knew. She knew the sounds and the smells and the fear, and it was amazing to have someone there that just knew. When I think about it, I can still feel her hug and hear her voice telling me “It’s going to be ok, Baby Girl” (what she always calls me). If you have a partner or someone that knows what you are going through, utilize that relationship. You are now part of a club in which nobody wants to belong. Being hormonal, scared, and lonely is a vulnerable space.
Allow yourself to sleep. You will want to spend every waking minute beside your baby, but you must get some rest and heal. Remember you just gave birth which possibly included major abdominal surgery. I can remember waking up at 10:00 am one morning and feeling like a complete failure for not being at the hospital by 7:00 am. My body clearly needed rest. Yours will too.
Eat. You need fuel in your body. Hospital food is not ideal, but you have to eat something. If you are pumping you need calories to produce proper amounts of milk. You also need to be well and nourished for when your baby is able to leave the NICU. Those fabulous hospital nurses do not go home with you!
Hospital Pumps- Speaking of pumping. Ask about using the hospital grade pumps while you are there. Most NICUs have nice rooms with hospital grade pumps available for your use.
Kangaroo Care. Ask the NICU about Kangaroo Care for when your baby is well enough to do it. This is skin to skin time with your baby. This can help you bond with your baby and it can also help your baby heal quicker according to many studies.
Seek local resources. Often times children’s hospitals have places to stay like the Ronald McDonald House. I stayed at RMH when my son was in the NICU. It is significantly less expensive than a hotel if you are not close to home. RMH also has a family room in many hospitals. They are usually stocked with snacks and meals that are provided by volunteers. Take advantage of these resources. They are there to help. (Funny story- now not then- we stayed in a hotel for a week before a room opened up at RMH. Our last night there the hotel caught fire. The smell of smoke and the smoke detector woke us up. We ran down several flights of stairs and ended up behind the hotel out an emergency exit. I was in flip flops, in a blizzard. That made me realize it can always get worse!)
Take notes and speak with your doctors. You will want to know their milestones and when special events happen. Also many children’s hospitals have residents and lots of different doctors. When I later went through my son’s medical records they were full of incorrect information due to so many people inputting information. This was also at Christmas and New Year’s so that did not help.
Take pictures. Some of your pictures will be scary and it will seem odd to take pictures of your baby in such a vulnerable state. You will want these later. A friend once asked me why I had so many pictures of my son in the hospital. I explained to her that we did not know if he would ever come home to us so we wanted pictures of him in case something did happen. These pictures have also been great to discuss with my son how his life started.
Be available. Many decisions are time sensitive and you will need to answer when contacted. Back when we were in the NICU, we were given a pager. I doubt that is still the process in most places! We were told if the pager went off that was bad. You never want the pager to go off. (Our pager went off. Yes, it was bad)
Don’t be afraid to ask questions. You will have questions no matter how much research you have done or what degrees you have. Find a doctor or a nurse that can answer your questions. There are no dumb questions and you deserve to have all the information you want regarding your child. I had no clue what ECMO was and had never heard of it before our experience. Riley Hospital started using ECMO in 1980. My son was only baby 512 to be on it. (I did however later see an episode of ER and a Grey’s Anatomy that had ECMO scenes.)
Set up a Caring Bridge or Facebook Page. Do yourself a favor and set up a page to provide updates. Either designate someone to do the updates, or take a few minutes every few days to update it. This will save you from repeating the same information many times over to all your friends and family. They care and they will call but providing the information once is much easier.
Do not be afraid to tell friends and family you do not want visitors. Your baby is very fragile and you will probably be emotionally fragile as well. You do not have to have visitors if you do not want them. On the flip side, if you want visitors, let them know. Many people do not know how they can be helpful during this time.
Talk to someone. Find a support group or a therapist to help you process your feelings. This is an important step especially if you plan to have additional children.
Hire support if possible. Thinking back to when we left the hospital I wish so much I would have had a postpartum doula and lactation support at home. Once your baby is well enough to leave, they just send you home. One day you have a full team of medical professionals and the next day it is you and a previously fragile baby. It can be nerve wracking. Find someone that specializes in this care and arrange for them ahead of time to help you when you return home, even if it is only to get situated and comfortable. You will not regret this decision!