The nurses and doctors caring for your baby at any particular time, can either make or break your day. We had amazing nurses and doctors. However, I could almost immediately tell which doctors were fighting for my baby as much as I was. The doctors who could tell me the facts while offering hope, not false hope, but optimism, they were worth their weight in gold. The nurses who went above and beyond just taking care of my son’s physical needs, but who comforted him and hung up pictures for him to look at, who bathed him because he enjoyed that and held him just because. I could never thank them enough. The nurses who never made me feel guilty for how long I did or didn’t spend with Josh that day. The nurses who understood how hard it is juggling two kids under four at home and a baby in the NICU, thank you. Our heart ached every time we had to leave Josh instead of bringing him home with us.
You will feel guilty. When I was with Josh, I felt bad for being gone too long from my other children and I was concerned about taking too much time for whoever was babysitting. Then when I wasn’t with Josh, I felt guilty that I wasn’t there for him. It’s so hard to let strangers care and feed and nurture your baby. One time the day nurse was telling me the night nurse gave Josh a bath and he absolutely loved it. I was so jealous that she got to do that and not me.
There is no right or wrong for how you handle your baby being in the NICU. I know friends who have literally lived in the hospital while their baby was there whereas I visited Joshua once a day, more if I could, but I literally would have gone crazy had I lived there. There is no right or wrong, so it’s best not to compare your situation to others. We all do the best we can juggling our other children or work or whatever it may be, while still trying to be there for our baby.
I’m not in control. There is such a helpless feeling when your baby is in ICU. Most of the time I felt pretty helpless. I couldn’t even feed him most of the time, so my duties were limited to diaper changes and temperature checks. There is no greater feeling of being out of control then watching your son have CPR performed on him and being able to do nothing except watch. Joshua was medically paralyzed at one point and on heavy medication and a breathing tube. When he started “coming to”, he would cry but you couldn’t hear him because of the breathing tube. I couldn’t hold him or do anything really to comfort him. I don’t know if there is anything worse than watching your child suffer and not being able to help them.
How to Persevere. After two and a half months in the ICU I could hardly stand talking to another specialist or physical therapist. I just wanted to enjoy my baby without analyzing every symptom or characteristic of his. The hour and a half of driving everyday and dropping the kids off with babysitters, definitely took it’s toll, but we had no choice but to keep going.
The importance of taking time for your spouse, yourself and your other children. Just two days after Joshua was born, we took our oldest daughter to Disney on Ice (we had previously bought the tickets thinking Josh wouldn’t be born yet). She needed that one-on-one time with us after months of me being gone frequently for doctors appointments. Andy and I also took frequent date nights throughout Joshua’s hospital stay. It helped us unwind and deal with the constant stress.
Literally taking one day at a time. It’s become such a cliche but we were forced to take each day as it came, because we had no idea what the future would hold. If you have good news for that particular day, rest in it. Don’t worry about what might come next. If you get some bad news, which happened quite frequently for us, grieve it. Let yourself cry and be mad and confused. Let it sink in, but then stand tall and never ever stop hoping.
Ask (and write down) lots of questions. Yes, the doctors are the experts, but inform yourself. Make yourself knowledgeable about your baby’s condition and all of your options. If you have a concern, voice it. Write down your questions/concerns in between talks with the doctors.
Remember, doctors only know so much. I don’t mean this disrespectfully at all. We loved Joshua’s doctors and they were so talented. What I mean is, miracles do happen. Children surpass doctor’s expectations everyday. Joshua was a medical mystery to the hospital staff and one of his specialists even said, “as you can tell, medicine isn’t perfect, it’s a lot of trial and error.” I appreciated her saying this.
Each day is such a gift. Much of the first six weeks my baby was in the NICU I was just waiting to get him home! I was wanting the days to pass quickly so I could care for and cuddle my sweet son without nurses coming in and out.I had to tell myself to enjoy the moments I had and I’m glad I did because we only had one and a half days at home. It’s tempting to wish away your days and just want to rush through them to get to the other side, but don’t forget to enjoy the moment too. Enjoy his sleepy moments in your arms. Don’t get too upset when he’s fussy but take joy in the times you are the only one able to comfort him. Try not to get too frustrated when he’s not eating from the bottle, but cheer for the small victories and progresses he makes. None of us knows how many more of those moments we will have.