The best advice I can give you is to grow a set. Sounds harsh but it's true. Your life is going to be borderline hell while you are a mom in the NICU. No one gets it except your partner and remind yourself of that often. It always made me feel better and that I didn't have to justify how I was feeling or the choices I was making. You and your partner are the ones that are talking at rounds everyday with the doctor, nurse practitioner, pharmacist, nutritionist, and nurse. You will need to learn to advocate for your baby but do so with respect and let the doctors and nurses help you along this process. Remember that you are a team. Yes you are the mom but you need to work together with your team in order to get to the light at the end of the tunnel. Trust is very important. Remember, doctors and nurses don't "know it all" and neither do you, so don't try to act like you do. I have always had a very good gut feeling and have learned to follow it. You should learn that too. You make the rules. Shawn (my husband) and I decided that only immediate family were allowed to come see Ryan. It's your baby and you do what you want. How a baby looks at 24 weeks is very different. I'm a psycho, private and protective person so I never sent out pictures besides to immediate family. I didn't show anyone what Ryan looked like until my baby shower when he was 28 weeks and it was on my phone, that I passed around to people with my phone locked so they couldn't see any other pictures. Told you, psycho, but I don't care. Oh yes and you will develop a thick thick skin. If you don't think your skin is getting thick trough this, try harder. Put your foot down and stand firm with your decisions. It will make this time in your life easier, yes it's possible. No one was allowed to touch Ryan besides Shawn and I. I'm a germaphobe so add that to having a nicu baby=psycho. Again our choice but you have to lay down the ground rules. If you don't lay down the rules you will end up doing things that you aren't comfortable with and you don't need ANY added stress. You will have enough of that, pinky promise swear to god.
Find a nurse/doctor/NP that you connect with and respects you and your opinions. You aren't going to like all of the nurses and that's fine but click with one and make them your primary. Having that solid team is what you need. I liked honesty and those are the people I clung too. I personally don't want someone sugar coating information for my sick child that I'm trying to advocate for. If you have a nurse that makes you feel uncomfortable with the care that they give your child, speak up. Your child can't speak so you need to do it for them. I once had someone tell us they were "getting more experience with the critical babies." I melted...she never took care of Ryan again. Not comfortable when he's so fragile. Ryan needed consistency so I made sure he got it. Ihad a favorite doctor. You should have one of these :) Yes I'm talking about you Dr. Bulanowski :) She was part of my A team. Everyone was excellent but you have to have an A team. It's normal. Oh yes and Mary was Shawn's #1....the sweetest soul. I could tell my A team anything and they always supported me.....and Dr. Soukup was my A team surgeon. Another amazing women.
For the most part, everyone respected Shawn and I's opinions. When we had questions they weren't condescending and made us a part of the team. I would always tell them if I was uncomfortable with something and they would listen and explain things more with me. They were never too busy to talk. I know they loved Ryan and really truly cared deeply for him. He was very special.
The NICU is your second home so treat it that way. I always would talk with the nurses and tell them weird stuff but it helped make the situation lighter. Ryan's primary's, Kim Brooke Chelsea and Rachel , know more about me than they even care to know but most importantly they know I love coconut bark thins and every stupid thing someone has ever said to me while I was pregnant. Haha! But they made everything better. I would have terrible days at the hospital and I would just sit in the room and they would comfort me. Some days I would talk their ears off for hours venting about how this was my life now. People say I'm strong, yes, but I was and still am a very very sad mom that has lost her son that brought me so much joy and purpose. I would always plan my days around Kim and Brooke's schedules. I'll never forget the day I decided that I wanted to spend the entire day and night at the hospital to be with Ryan. Brooke told me that she was excited since she was working 7-7 ha. We talked about weird things that day. But this is how a mom gets through her time in the NICU. You become a little weird :) Moving on from the A team.. I would always ask how people's weekends were and when they had a day off what they did. I took an interest in people's lives. I could tell you where just about everyone lives, how long they have been a nurse and how many kids they have.
Click with another mom in the unit. I connected with a mom that was so so sweet and really cared about Ryan. Everyday she would ask me how Ryan was doing and I would do the same for her twins. She was so positive and helped me on my darkest days. If she was having a bad day I would give her the hug she needed. We have developed such a close bond and still get together. Her kids are so cute and getting so big!
When they tell you that it's going to be a roller coaster, it's a damn roller coaster. What you are thinking in your head is that one day will be good the next might be bad. Kiss measuring your life by days goodbye , it has now changed to seconds. Your life can and will change in a second. It's difficult when people ask, how is Ryan doing today? My response was often " the last time I checked in he was doing ok". That wasn't a smart ass answer, it was the honest truth. Again, I am not kidding you, your life is now measured in seconds. Take my word for it. Savor every second you have of good in your babies day. The week before Ryan had passed I did a blog post asking who turned on the light switch. Ryan went from being in an isolet, no clothes, 4 lbs to a crib, being swaddled, wearing clothes, being held in Shawn and I's arms, eating, just under 6 lbs....just amazing. We were thinking few... FINALLY A BREAK. Then July 9th in the morning he wasn't acting like himself and within 24 hours we had to say goodbye. I don't want to go into the details of our life from 1030am July 9-1120am July 10th. But please, savor every second. It won't steer you wrong.
Pumping is hard work! Mind over matter. Do the best you can and that's all you can do. The lactation consultant came into my room one day and told me I wasn't pumping enough " but she knows that Ryan isn't eating right now." I would Ignore these people but politely. Like I had said in one of my previous posts, nice people but evil job. Stay committed if you want to. Speaking of pumping I dropped off my milk that I was storing last Friday. It made me so happy to do this but it was very difficult. We drove it down since we had such a large supply and it was easier to drive down to Newton Massachusetts than ship it all. I know that it was the right thing to do and to share the love with sick and premature babies. I keep reminding myself of that, and Shawn tells me everyday. I felt like I was leaving a part of Ryan there....and as Shawn reminded me, we were. The ladies there were so nice and gave us a tour of their facility. They could not believe how much milk I had and it was amazing to hear them talk about it. I told them my joke that " size doesn't matter" and they cracked up. They took our picture and one of the ladies was tearing us as I talked about Ryan to her. My favorite part was when I asked them if they wanted to see a picture of Ryan and their eyes lit up. That made me so happy.
In the future, when I start producing milk I am going to donate to the milk bank again. I look forward to this and I hope others will consider doing this. The number of babies that you are helping makes all the time and effort worth it. Here is a wonderful article that was written by another mom that explain more about what a milk bank is:
Back to NICU life. You will never sleep and you will want to punch so many people in the face. People point out how tired you look. I loved when people would tell me "oh you look tired " or my favorite was " wait until Ryan comes home then you will really never sleep". Hey thanks I think I'll actually sleep more since I won't be traveling 30 minutes to see Ryan, working , pumping and having my life change Every second and maybe I'll try to eat in there somewhere. You will pull 16/18 hour days and never be home. Don't complain to anyone about how tired you are or about your life , except your husband and your mom. When you complain that opens up the door for people to give their opinion and that is the laaaaast thing you want. When I tell you people have no idea what your life is like in the NICU with a 24 weeker, they literally have no idea. They aren't 26 weeks or 28 weeks, they are 24. Even one day makes a huge difference. I had no idea what it was like until I lived it. I said that I wanted to strap a go pro to my head for a day so people can see what life is really like. Not so people would feel bad for me but so they had even an ounce of a clue of the emotional hell that we lived as a parent.
Figure out how you want to communicate. I decided to do a blog. It has helped me so much with communicating how I'm feeling and saying whatever I want. You have to be honest with yourself though when you do a blog. You get back what you put out. I guess this is a good point to remind you to grow a set :) I'll never forget I was talking to someone maybe 2 weeks after Ryan was born and they said that they heard Ryan was doing so well and he was off the vent and breathing room air. I we was so sad to hear this. I know they didn't mean anything by it but that was so far from the reality it made me frustrated that information was already getting around like this. I needed a way for people to hear accurate updates about Ryan without constantly asking our immediate family and so we could have a break. So a blog was born! I didn't share everything on this but what I did highlight surgeries and larger things that were going on. Not everyone needed to know he needed his fluids decreased since he was so puffy, his kidneys weren't working properly, his billy was going up and he needed to start eating so the billy would go down and he could take the octigal to help with that once his feeds were up but then he was on bowel rest since his belly was big....all within a 24 hour period. It's too much to keep everything straight between you and your husband if you both aren't always there so don't try to be a hero. It's a vicious cycle/ complete nightmare. Everyone just needed to know he was having his duct closed. Lol. You learn these things as you go along, less is more!
Find the small ounce of good even in the worst of situations. My son passed away after 70 days. It breaks my heart into a million pieces that he is not here but I try to focus on the good. I won't go into the the details, refer to my last post about why I loved him so much, but it's true, you need to find the good. Change your mind set, ITS THE ONLY WAY YOU WILL SURVIVE THIS. Have the attitude of asking what you need to do to move forward and support your child rather than dwelling on the why me!?!?!?! Don't get me wrong, I would sit and be pissed wondering why me, but it was a phase....and I would move past it. I would get mad that the mom's that make poor choices would say to me "oh I have no idea why I went into labor early." Learn to ignore these moms because they aren't fooling anyone. Repeat after me....I will ignore them.
I am learning to get used to my new normal. When Ryan was born I had to get used to my normal then. I had a new home and a new routine, I was a parent. Now I'm learning to live life as a mom that has lost her son, with no explanation as to why I went into labor early, and working hard to get up everyday and put one foot in front of the other. No matter how someone looks on the outside, they are still hurting on the inside, forever. Ryan was so sweet, cute, and feisty. I will forever love my baby and am very lucky to have an angel watching over me everyday. There is actually no luck in Shawn and I's life, everything good is now sent from Ryan.....forever :)
Xo
Andrea
Powerful words Andrea; you truly are an amazing person.
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