Catching Up with You // Day 179 in the NICU

Keeping in touch @ AuthenticVirtue.com

Hello, sweet people. Ages have past since the last real update on Uriah; in fact, the last time I shared about our little guy’s progress he was only 3 1/2 months old. Now, he is two days away from 6 months. Let me share with you some of the amazing, hard, wonderful things we’ve been through over the last 5 months!

We have been in the NICU a total of 179 days. We’ve seen our little guy go through SO much and have been amazed by the goodness of God in his life.

Uriah has finally gotten used to his trach. The tracheotomy felt like a last resort but it has ended up being one of the best decisions we could have made. Now that he is no longer on the ventilator and breathing tube Uriah has so much freedom! I’m able to pick him up, play with him, do tummy time and roll around on the floor.

Speaking of tummy time, Uriah loves it! He loves to hold his head up on his own and is beginning to roll over! (Which is a lot for someone with a head in the 99th percentile!) 😀 He loves to stroke his hair, suck on his hands, and especially likes to bang his toys as hard as he can.

He’s begun teething and drools without end. The sad thing about having a trach is that it can keep you from using your voice; the doctors had told me not to expect to hear when Uriah cries, coos, or laughs. And while I cannot hear him in those traditional ways I was surprised and thrilled when he began making sounds around his trach. It’s a lot of gurgling breathing sounds but I’m positive he makes most of the noises on purpose — after all, he wants to talk and knows this is the only way he can! This morning I mimicked his gurgles and he got the funniest look on his face … I guess I was speaking his language!

Right now, we are hoping to go home in 6 to 8 weeks. Uriah has still not gotten to eat by mouth because it was discovered that his TE Fistula had reconnected and there was a small leak from his esophagus into his trachea and lungs. He has had two small procedures where they cauterize and place glue over the connection hoping that this will seal up the leak.

Hopefully, he will have a Swallow Study done next week and, if there is no leak, we can begin the process of eating! For a baby who is 6 months old and has never been able to eat by mouth this will be a ginormous task. But, we believe God is incredibly good and kind and that His ultimate will is best. Instead of being anxious over this step we’re finding ways to be thankful that we have even gotten this far!

This is a fun stage to be entering. As we think about going home in the next two months I’ve begun talking with private nursing agencies and had an inspector come to our home to ensure it would meet Uriah’s equipment needs. Sometimes, I am overwhelmed when I think about how different life will be — nighttime nurses in our home, carrying an “army’s worth” of supplies when we leave the home (or even move to a different room), and calling the electric company to put us on the “priority list” in case of a power outage are just a few things to consider.

But then I watch my baby boy play. This is a living, thriving, happy baby who was given so little hope in the beginning. This is the baby who watches me walk around his bed even though we were told he was blind. This is the baby who loves to listen to music even though we were told he was likely deaf. And this is the miracle who is thriving even though we were told there was too much damage to even try the necessary procedure. Being Uriah’s mom is a role I absolutely love and it is sweet.

Please keep lifting our family up in prayers as we near the finish of our NICU season. Some specific requests are:

  • For Uriah’s Swallow Study to be successful and the TE Fistula repaired so that we can begin eating by mouth
  • For Uriah to have the drive and want to to eat by mouth
  • For his current case of tracheitis (bacteria in his trach) to be controlled and subdued
  • For his little, upcoming teeth 🙂
  • For Dalton and I to have renewed joy and strength … I’ll tell ya, being separated most of the week for several months is not fun, not easy, and not enjoyable! But, I have to brag on Dalton! Every week, he finds ways to bless and encourage me. He is always finding ways to bring me refreshment even though he is the one working and alone all week. Thank You, Lord God, for giving me such a man!
  • For God’s will concerning private nursing. We are required to have someone awake with Uriah at all times because of his trach so we are applying for night nursing to help as we can’t be awake all the time and live normal, healthy, thriving lives.

And most importantly, thank you for all the love and prayers you have given us. There are days when I still can’t believe I’m not at home … it feels almost surreal to be away from home this long. But you have made this time not only bearable but time to enjoy, grow, and be blessed in. We thank God for you!

With love, blessings, and coffee,

Frannie 

Making Memories in the NICU

Crafting good moments in the NICU can be hard. When pregnant you prepare for all the normal, beautiful things a healthy pregnancy brings. You decorate the nursery, stock up on diapers, and prepare your home for baby’s arrival. Special memories happen every moment — from the time you bring your little one home every moment is a new memory and something you’ll cherish forever.

But what happens when you don’t get to bring your baby home? What if days, weeks, and months trickle by while your little one fights for life in the hospital? For most families, making memories at home just happens but for many NICU parents, memories feel a lot more like PTSD.

We’ve been in the NICU for (almost) 5 months. It wasn’t until Uriah was 2 months old that I realized I had been unconsciously holding back on making memories. Thoughts like, I’ll be a real mom when I am solely in charge of my Uriah’s care and we’ll do special things when we’re out of this place in back in the real world silently affected my behavior.

I mean, how do you make memories when you can’t even pick up your baby because he’s in an incubator, with a breathing tube, and a picc line iv? How do you create special moments when you’re always surrounded by staff, always hearing loud alarms, and always afraid for your little one’s life? How do you make the moments between morphine drips, infections, and surgeries fun?

Sweet parent, if you’re in a similar situation, it can feel trivial and too hard to focus on making memories with your little one. You may feel like waiting to get home before you start creating special moments; you may even be too afraid to do special things with your child until you know, for sure, if he or she is even coming home.

I know. I’ve been there.

But, at some point in your NICU-parent career, you’ll wake up and realize that this is your story. This moment in the NICU is as much a part of your motherhood as anything to come. Your baby will never again be a baby. He will grow up, one month at a time, and you’ll look back and wonder where your tiny, darling preemie went.

I know. I’m there. (I mean, how did I become a parent to a fourteen pound, babbling baby boy?)

So, how do NICU parents make special memories when life is anything but perfect?

With intention. It’s very easy to let hours slip by when you spend most of your time in a hospital. Right now, my life revolves around pumping, arriving at the hospital, grabbing a cup of coffee, meeting with doctors, playing with Uriah, physical therapy, changing diapers, putting Uriah to bed, pumping, eating lunch, giving Uriah a bath, trach tie changes, playtime and therapy, naptime, pumping, and going back to the Ronald McDonald House.

When I am not purposeful, those hours fly by. Sometimes, I literally cannot remember what kept me busy all day and, for the life of me, I can’t figure out why I am so tired.

I am purposing to be intentional. I’m going to slow down. Here’s to really playing with my little boy instead of worrying about whether or not we’re meeting milestones. Here’s to reading him his favorite book and taking the time to really give Dr. Seuss the drama he deserves. Here’s to holding the pacifier patiently, changing the diapers endlessly, and making trach changes as fun as they can be.

Because, Mom, this is your moment. This is your motherhood. And you’ll never get these days back. Here are some specific ways to make memories when your child is in the NICU:

  • Read dramatically to your child … and watch their facial expressions
  • Forget milestones … celebrate every victory
  • Really take in your child … admire her gummy grin, cherish his sparkling eyes, enjoy her tiny, perfect feet
  • Take pictures … really good ones where you see more of the baby than wires, if possible
  • Sing nursery rhymes … do the hand motions of Itsy Bitsy Spider and Patty Cake
  • Learn how to maneuver around the tubes and wires so you can pick up your little one yourself … or enjoy simply resting your hands on your preemie and feeling they’re warmth
  • Decorate your baby’s area … make a Likes and Dislikes poster for the staff … scrapbook pictures … draw a nametag and hang it on baby’s incubator
  • Take time to meet other NICU parents … really listen to their stories … really pray for them when you think of their stories
  • Do things for your baby with your spouse, if possible
  • Offer to bring your nurse a glass of ice water … or a $.25 Laffy Taffy
  • Create a schedule your baby can get used to around the staff’s schedule
  • Forget milestones (oh, did I say that already? That’s because this is probably the most important thing you can do for yourself and your baby).

These are just a few ideas that have helped us make memories. Yes, I can’t wait to get home. But more than that, I want to make these days special for Uriah. I want to be able to look back on these days and say, Yea, those days were hard but we sure had a few good moments, didn’t we? 

Talking about making the most of our moments why don’t you hop over to my new friend Stephanie’s blog, The Vintage Modern Wife. She has a brilliant, beautiful post about creating a sensory filled Easter for her little one. I think she has some EXCELLENT ideas for making this Easter special, especially if you have a little on in the hospital.

NICU parents, what are some ways you have made special memories while in the hospital? Are there any budget-friendly, space-friendly ideas you could share with us? I’d love to hear!

Love, blessings, and coffee,

Frannie