A NICU Mom Connection

Connection_buttonIn St Cloud, Jax had a NICU neighbor named Ashton. We noticed him immediately because the tag on his isolette said “1 pound 8 ounces” – same as Jax! And the tag announced that the mom’s name was Andria. I immediately felt a connection, even though I had not met her. I never saw Andria – we were obviously on different schedules.

As they days went on, the nurses began calling Jax and Ashton the “trouble-makers” of the pod. One would alarm and the other would follow seconds later. They transferred a more “calm” baby to another pod because these two boys were causing so much ruckus no one could get any sleep. While we were not allowed to go near Ashton’s isolette because of privacy laws, I found myself rooting for him each time I heard his alarms.

Then, I finally caught a glimpse of Ashton’s parents at his bedside. Man, they looked like shit. Zombies.

Ashton’s mom and I finally talked that day. I found out that Ashton was originally going to be named Jackson – seriously! I found out that Andria cheered for Jax when he got his stats back up, just as I cheered for her son. I also found out that she was no stranger to the NICU: Ashton’s brother was born premature exactly one year earlier. Baby brother died when he was 5 weeks old from NEC. (Necrotizing Enterocolitis is where the intestines begin to die.) They found out that morning that Ashton also had NEC. They lost their first child to a disease that was threatening to claim the life of their second child.

Like a punch in the gut, it became crystal clear to me…they looked like shit for a reason.

The next day, I arrived at the NICU and found people crowding around Ashton’s isolette; the first person I saw was the Chaplain. I immediately thought the worst – did Ashton earn his angel wings? Thankfully, he was still holding on. Now, he was fighting a serious infection that was making his tiny body swell up to twice it’s normal size. He looked like the Stay Puff Marshmallow Man – peering at him across the room, I could only see slits where his eyes should have been. And the NEC was getting worse. The transport team was there to take him to Children’s Hospital so he would have access to more advanced treatments. This was his last-ditch effort – the mood in our pod was somber. His parents were sobbing. The nurses were trying to hold back tears. The doctors were grim-faced.

I felt like I was in a horror movie. Slow motion. The baby was wheeled out in his transport isolette. The Chaplain was praying out loud. Ashton’s parents walked, tight-lipped and stricken, after their son. They did not look at me. They did not take their eyes off their precious son. And then they were gone.

Jax’s monitor alarmed.

I was rocketed back to my reality. I held Jax extra tight that day. I sent all the love and light I could muster to Ashton and his parents. I cried for them as if it were Jax in that transport isolette.

I never heard what happened to Ashton. I thought that maybe our paths might cross again once we were transferred to Children’s, but no such luck. I do not know if he made it or not.

********************

When I first arrived in the NICU, I noticed the moms who seemed to “have it together.” They knew where everything was, they knew all the staff by name, they knew all the medical terminology. I remember staring at those moms during the first few days of Jax’s stay. (They probably were a bit creeped out…) Staring and wondering how they did it. Staring and hoping they would reach out and help me. I never really had the nerve to talk to them; everyone seems so intent  on their babies – I didn’t want to interrupt.

After a while, I realized that I had become the mom that appeared, from the outside, to “have it all together.” I recognized the look on the face of the new moms. They were grasping, same as I had been, for some sort of reassurance, some connection. I smiled. I saw relief. We were not alone. We could tell by the look in each other’s eyes if it was a good day or a bad day. We could send strength in a smile. We had a connection, and we had only spoken about 10 words to one another. It didn’t matter that we didn’t know each other’s names…

So many preemie bloggers talk about how they are still in contact with parents they met while in the NICU. In a way, I’m jealous because the parents I met, I only knew for a short while and I never got a chance to get their contact information. I hate not knowing what happened to Ashton (and Lily, and Levi, and Drake – more of Jax’s NICU “neighbors”). I think about them alot.

If I could talk to those moms now, I would tell them that even though we only knew one another for a short time, they helped me navigate the scariest time of my life. They helped me by smiling back. Even though I don’t know their names or how their babies are doing, those NICU moms will be a part of my life forever.

Now, thanks to social media and Facebook, I have a chance to connect with other preemie moms. We can share our stories and our worries and we “get it.” We haven’t met in person, but we know each other. We all have had different journeys, we know different things, our kids are developing on different timelines. But, we send strength in a “like.” The community of moms is strong. We share the burden of healing. Thank you, preemie and NICU moms, for letting me know that I’m (still) not alone…

Advertisements

Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool.

13 thoughts on “A NICU Mom Connection”

  1. I’m glad you posted a link to your blog on the preemie message boards. I was fairly new to NICU life, and knowing that Jax, a 23-weeker, had made it home gave me hope for my 25-weekers. I’m glad that even though I haven’t met you I get to still root for Jax. Funny…I seldom remember the names of the other parents at our NICU, but I ALWAYS remember the names of their babies.

    Like

    1. Thank you for the comment, Leslie. I’m so glad you found us! How old are your babies? Are they still in the hospital? We’re sending lots of love and light to your little ones!

      Like

  2. We had a mom that Cory met first in the family waiting room and I met her later, they were a few beds down from Xander. Her little girl was born right around when Xander was born and the mom had preeclampsia like I did. But this little girl was born without arms and with a very tiny stomach. If I think about it long enough I can come up with her name (remembered they called her RE (sounds like Ari) for short), when we were tranferred to Ridges after 3 weeks there really wasn’t much opportunity to meet other parents in the smaller NICU as we had our own room for probably 4 of the 6 weeks we were there, but when we transferred back to the U of MN the mom of the girl without arms was still there and we were in boarding rooms at the same time and her little girl also had bilateral hernias and had the repair surgery just before Xander. I wish we would have kept in contact because I’d love to know how they are doing. We checked in with each other in the hospital but I always felt I couldn’t ask anything too personal with all the HIPPA stuff or maybe they didn’t want to be reminded of the NICU and people there after they left. And I sometimes wonder about our other neighbor Xzavier for the first 3 weeks who it never seemed had any visitors (the parents could only make it on weekends) and whose mom changed her first diaper ever on her tiny 3lb baby. We only had the mom smile connection and a brief conversation about naming our boys with X and how ironic it was they were next to each other in the NICU. And then there was the 14 yr old mom we were roomates with for a few days, I actually talked with the 33 yr old grandmother more and was heartbroken with their family situation. They were preparing to take their little girl Faith home and I couldn’t help but overhear their conversation with the socialworker that they didn’t have clothes or a diaper bag or anything really, they had gotten the carseat from a friend. They didn’t have a car and rode the bus to the hospital or got rides from friends. The grandma had 5 children of her own ranging from 17 to 2 yrs old and now had her 14 yr old daugher’s preemie baby to help take care of with no family or real support in the area. I went out that day and bought a diaper bag and filled it with some essentials and set it on their side of the room when no one was looking. Fortunately I was pumping and the curtain was closed when they found it so they couldn’t see my face. I think they suspected me but I wanted to be anonymous so they didn’t think it was pity. I felt so blessed myself having recently had a baby shower and wanted to pass it on. I sometimes wonder how that family is doing.

    Like

    1. Isn’t it amazing the details you remember? It’s awesome that you put together the diaper bag for your young roommate. I’m sure they really appreciated the help. It’s humbling to give and receive help from others who are in your shoes.

      Like

  3. Andrea you brought tears to my eyes. Brings back the days of sitting there watching and hoping. We didn’t have any people we kept in contact with either, but now because of social media i can talk to other moms of vog kids. I have friends from all over the world now that “get it” even though i may never meet them (although last year in ny we did get to meet a couple) they mean so much to me.

    Like

  4. That made me cry too! And not just because I’m preggers – you have a real gift Andrea and you are helping so many people simply by sharing your story and thoughts and support across the preemie community. Jax is so lucky to have such a great mom!!!

    Like

    1. Your experience as a NICU mom has been a huge help to me! Love you, too! (And my favorite thing to think about today is Kayla’s comment on Jax’s picture “he growed some hair…!” Too cute!

      Like

Thanks for hanging out with us! Leave us a comment!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s