So, you are home with your preemie! Yay! There was so much joy in those first few days at home in just being able to WALK around my house with my baby, and no cords attached. Even if your baby still has cords, whether that be oxygen, a g-tube, or a trach....there still is so much joy to be found in being in your OWN chair or couch in your living room with your baby. The first night we had Asher at home, he was in our room in a pack n play, and I remember going to bed and looking at him from across the room and just thinking, "Wow, he's really in our room with us!"
While we were so thankful and happy to be at home, I will say in the weeks, and months that followed coming home, there were some difficult and frustrating times. I think, in some ways, challenges at home with your preemie can be harder than being in the NICU. The reason I say that is because in the NICU, you have constant care and eyes on your baby. You don't have to make all the decisions or notice any little thing that may be off. Once you are home, it's all up to you. And that is scary when you've only cared for you baby from the "back seat" for months. It can feel very isolating to come home too. I think especially if you are a stay at home mom. You can relate to your other stay at home mom friends, but not fully. They may be having feeding issues of their child wanting to eat all the time. And you may just be struggling to get your child to eat at all, or get them to eat in at least 45 minutes. Or, you may have friends questioning their child's developmental milestones, while you just hope your child can meet their corrected age milestones or weight on the growth curve. The challenges you face aren't necessarily harder than your friends full termer's , but they are different. That can feel isolating. Especially when you've been waiting for so long to be "normal" and be at home with your baby.
So, here are some tips:
- Find your medical support system. Meaning, find a pediatrician who is familiar with preemies. If your preemie will be getting therapies (most are referred for evaluations when leaving the NICU), find a home health company that you've heard or read positive things about, or a therapy clinic. I found that once I got my support system in place, medically, I didn't feel I was just floating around anymore without post-NICU, preemie support.
- Find emotional support. I think this can be done in 2 ways.
1. Let your friends in on what's going on, what's going well, and what's hard. They may not be sure what to say or not say, so you may have to take the lead on bringing up what's going on with your baby. Let them know how you need to be supported. Be honest. And realize you probably have more in common than you have that is different. It took me a while to realize the issues I delt with with Asher looked different, but weren't so different that we couldn't relate at all. Especially being a new mom....you can still relate in many ways to your other friends who are new moms but didn't have the preemie/NICU experience. I mean, your baby is still a baby - preemie or full term-- many things are the same! It took me a little while to see this, and when I did, it felt really good. I mean, there were more things that were "normal" about us than I realized! It just took looking at it that way. I mean every baby eats, sleeps, and poops, and that's about all new moms talk about anyway!
2. Find some preemie moms to connect with. I think it's so important to foster the friendships you have, but finding a group of preemie moms to meet with every once in a while will be good for your soul. There's a connection NICU moms instantly have. I have found a group that meets once a month. Everyone has a unique story. I will say, it's the one place your birth story actually doesn't stand out as much. I mean everyone's was a train wreck! And that feels kind of nice, to not be the "only one" with a tough birth story/experience. And then it's also nice to connect on issues you face once you are at home with your preemie whether that be follow up procedures or check-ups with specialists, RSV isolation, feeding issues, breathing issues, developmental issues and therapy....it's nice to relate with others going through similar things.
- Take time to grieve what you lost, and what you've been through. I was told by another micro-preemie mom that one of the hardest things about coming home and being in RSV isolation was dealing with all the emotions of the NICU. I found this to be SO true. Life in the NICU seems slow sometimes, but it's fast paced at the same time. You are driving back and forth constantly, and I know I felt like my husband and I were always on the go. And for us, we lost a son..and didn't have a lot of time to focus on that because we had another very tiny and sick son who needed us. So, once we came home, life changed dramatically. Suddenly, I had NO WHERE to go, and couldn't because I wasn't going to expose Asher to anyone. So, I had lots of time to think, and replay events. It was very hard some days, and still is from time to time. And I think writing, whether that be journaling or blogging is great therapy. That and talking with good friends about it as well. And what I mean by grieve what you lost is...even if you didn't loose a twin like we did, you did lose what you "thought" your child's entrance to the world might be like. You lost the rest of your pregnancy, maybe getting a baby shower, just getting that "normal" experience. And that needs to be grieved.
- Celebrate all that you have and all that your baby IS doing! It's so easy to focus on what your baby isn't doing like other full term babies. But what about what they ARE doing?? I'm guilty of this for sure! Things that were so hard or non-exsistent in the NICU now are so simple...like breathing, eating, smiling, cooing, eye contact, growing, sleeping...anything and everything your baby CAN do is something to celebrate!
More to come....
1 month ago