Your boys were born at 26 weeks, what was your NICU experience like?
It was longer and harder than anything could have prepared me for. When Asher and Nolan were born I convinced myself that they would be home by their due date or within a few weeks past. I was not prepared for them to be there for another two months longer. The entire journey was hard and they scared us many times, but emotionally I think I was at an all time low at around 3.5 months because I knew they were still not coming home any time soon (they made it home at 5 months and 1 day). It was such a frightening time, not only getting through the day to day traumas but also worrying about their futures and how everything they’d been through would affect them as they got older. But we had amazing care in our hospital so we always knew the boys would not come home until it was completely safe. In the end they came home without the need for oxygen or feeding tubes, or any extra apparatus with the exception of a wedge and medication for their reflux, so it was definitely worth the wait.
What advice can you offer families in a similar situation?
Turn to the people who offer support and take them up on it. People will humble you with their kindness and they will offer to help and mean it. I have a hard time asking for help, so had to teach myself to say yes when people asked if I needed anything. But with a 3 year old at home, we really did need an extra hand at times. I also joined an online preemie support group and made a really good friend in a similar situation. As much as your friends and family want to offer you kind words, no one knows what it feels like unless they have been through it so it’s great to have other parents to talk to. You have so many emotions and it is great to know that everything you’re feeling is “normal”.
How are your boys now?
The boys are great! They are enormous for their corrected age and have been caught up in size to their birth age since around 9 months. That is a huge accomplishment considering they were just 2 pounds at birth! Their health has been really good and there have been no hospitalizations since discharge 8 months ago. Aside from keeping them germ free as much as possible, we mostly treat them like healthy babies. Developmentally, Nolan is progressing as expected, but Asher is having some gross motor issues. We expected that because he suffered two brain bleeds soon after birth, but we have great physio who is helping us with a lot of exercises. They are happy, social little guys, and there is no way anyone looking at them now could guess what they have been through.
How did you explain the situation to your daughter Rio?
I had been on complete bedrest, so we had done a lot of explaining about how the babies were too small to be born and I needed to lie down to keep them in as long as possible. She is sensitive and she was very worried about me, so I think when the boys were born she was relieved mommy was going to be back to normal. We were unsure about when to bring her to see the boys and how much to tell her, but the hospital social worker suggested we tell her the boys were early and small, and just let her see the rest for herself. That turned out to be the best advice ever, and it was such a beautiful thing when she first saw them when they were only a few days old. It was as if she didn’t even see all the machinery and tubes around them, she was just so thrilled to be a big sister and see her babies. Through the entire ordeal she was surprisingly patient and respectful (as much as a 3 year old can be!) of the limited amount of contact she could have with them.
What are some of your favorite activities to do as a family?
Just hang out at home, the five of us. With my husband being a shift worker and us keeping the boys at home as much as possible to avoid germs, we really like when we all get to just be together with no appointments or errands. Rio absolutely loves to help Asher with his physio exercises, and we are really enjoying meal time now that we are trying to feed the boys more of the meals we eat.
What question(s) do you have for the other community members?
To those with preemies who need to keep your babies away from crowds and germs this winter – what do you do to keep active and stay sane at home?
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