prematurity

Our New Normal

It is human nature for us to want to be “normal” or have what is considered to be a “normal” experience when it comes to having children. What’s interesting about the idea of wanting to be “normal” or fit-in is that every individual has their own idea of what “normal” looks like.

I always say that we have not had a typical experience when it comes to parenthood and child-rearing. It isn’t typical for babies to be born early and live in the hospital for 191 days, although, premature birth is actually more common than you might think. Regardless, one of the primary lessons I learned and concepts I still lean into is the idea of having a “new normal”.

I will never forget the conversation I had with a friend from college who had the experience of being a NICU mom and she said to me “you will find your new normal”. She explained that our new normal would likely change fairly often given our circumstances, and she was completely right.

Right now, we are adjusting to our new normal, which is a place that I had not ever even thought about us being at: Emerson is walking. No, Emerson is running! Also, talking more and being off the ventilator during the day. I never truly allowed myself to think about this day coming mostly because I made it a point to live in the moment of whatever our new normal was at the time. Here’s how the stages of our new normals have gone for us:

  1. Adjusting to life in the NICU, visiting Emerson each day while pumping exclusively
  2. Going back to work while Emerson was in the NICU and still visiting him everyday
  3. Transferring Emerson to the PICU and adjusting to a different hospital and different staff
  4. Transitioning Emerson home with a trach, g-tube, and ventilator after 6-months of being in the hospital

And now here we are at the stage where we are needing to baby-proof outlets and cabinet doors. I cannot explain how blessed I feel to be adjusting to this new normal. My heart smiles every time I see him running around playing or getting excited to see his favorite show. He has been able to have experiences that I never even imagined when he was in the hospital, like going on field trips with his daycare. We will even be taking him to his first live show to see Paw Patrol next weekend!

I guess I am saying all of this to say to my fellow NICU moms and dads, embrace your new normal and understand that it will change periodically. Continue to be totally present in the moment of whatever normal you are in. Time feels like it moves so slow when you’re a NICU family, but eventually, you look back and can’t believe you or your child has come so far. Stay encouraged. 💜

Father’s Day, Holidays, NICU Life, prematurity

Happy Father’s Day

A whole month has passed… wow. Time and I have not been the best of friends lately with me feeling like there just haven’t been enough hours in the day. With that being said, I can’t believe we are already at mid-June and celebrating Father’s Day!

This day is special for so many reasons. I get to honor my grandfather, the man who raised me and gave me so much throughout my life. I owe so much of my success to him. I also get to sit and reflect on my husband. The man who has been the leader of our family displaying the most beautiful vision of unconditional love I have ever seen between a man and child.

We always hear about NICU moms, but I feel like I don’t necessarily hear as much about NICU dads. NICU dads go through just as much and can be just as traumatized as moms are. It is so different for them because their nature is to “fix it” and you’re literally in a place where you must sit, watch, wait, and ride the rollercoaster of emotions. I am blessed that my husband found a way to channel whatever nervous/worrying energy he must have had into positive ways to help and support his family.

Here are three ways he did that:

  1. Always showed up to the hospital and was just as involved as I was in our son’s medical issues
  2. Supported my breast pumping journey by being my cheerleader and making sure we had dinner on nights where I was just too tired to even think about food
  3. Constantly reminded me that we were doing the best we could and our son was going to make it through

I am so grateful that Emerson was blessed with Jeff as his dad. He is always there, encouraging him, helping him learn new things, and still very involved with his medical care. I am beyond blessed to have him as my partner. Everything we have gone through has made us closer. I could not imagine being on this journey with anyone else.

To my husband: Thanks for being the amazing father and husband you are. Emerson and I love you and cannot wait to celebrate you today!

To all the dads out there: Enjoy your day, and have a Happy Father’s Day!

To the NICU dads: I wish you a Happy Father’s Day, and I encourage you to continue leading and strengthening your families. You are making an important impact, and you are amazing!

Holidays, NICU Life, prematurity

It’s Mother’s Day!

Today is a day that I am so grateful to be honored on. God blessed me to be the mother of a strong, resilient champion who continues to amaze me everyday.

Emerson is keeping us busy these days with working on his walking and all of the other general busyness of a soon-to-be 2-year-old. When I think of that little 1 pound baby in the NICU fighting for his life and see Emerson now at 22 pounds, I cannot help but be on the verge of tears.

This Mother’s Day I am celebrating the milestone of Emerson getting his first haircut. We held off for a while, but finally felt like it was time:

I was amazed with how well Emerson did throughout the process. Although, almost anything is possible with Paw Patrol (LOL)! As our cousin cut Emerson’s hair, I kept thinking back to my 1 pound, 26-weeker who was intubated for months and had a number of issues due to premature birth. I definitely had not imagined this moment. One thing about NICU life is it can cause/teach you how to live from moment to moment and take things day by day. Because of that, every milestone then becomes amplified. For me, I never allowed myself to think about any future milestones because I focused all of my energy on whatever Emerson was going through in that moment and prayed that God would be gracious enough to get us to the next moment. Looking back on it, this is probably one of the most positive takeaways from our NICU experience: the ability to slow down and truly take in every single moment no matter how small.

Happy Mother’s Day to all the amazing mothers out there, and for those of you currently in the NICU, I celebrate you and your strength. I know the path you are walking is not easy, but remember to breathe through it all and hold on to your faith. You’ve got this! 💜

prematurity

The Incredible Thing That Happened…

This time a year ago, I remember getting settled into home life with Emerson. He was just about to start at his medical daycare (also known as PPEC-prescribed pediatric extended care), and I was so nervous. There was a lot of transition still happening around this time, and I was praying to God that this daycare would work out since we really had no other options.

Now that he has been at the daycare for almost a year, I am more than certain that this was the best decision for him. He recently was evaluated for developmental milestones, and he has caught up in almost all areas with the exception of those that would require him to not have his feeding tube or trach. In the social area, he was actually off the chart for his level of development, which is amazing to me. What a testimony!

One of my favorite things about his daycare is that he is able to get his physical and speech/feeding therapies there. This has been invaluable to us. Not only is it more convenient for us, it also means that he can have a more consistent experience since his nurses and caregivers are all aware of his progress almost immediately.

Last week, on March 7th (my husband’s birthday), Emerson’s physical therapist sent me the below video and I was almost a puddle on the floor:

This video is such a blessing to our family. When I think of him being born at 26-weeks and 1 pound, it just further confirms that miracles are real. I thank God everyday for choosing us to be Emerson’s parents and allowing us to live with a miracle.

This was not my original intended post for this week, but I had to share after receiving that video on Thursday. I hope this helps someone out there lean more into their faith and understand that anything is possible no matter your circumstances. Keep believing for miracles. Happy Sunday! 💜

prematurity

Family Visits

When you live away from family, nothing makes life seem more “normal” or like “everything is all right” than having family in town to visit. I think the reason is because you are reminded truly of who you are, all the strength you have, and that there’s an army of people who love you, want the best for you, and will travel to the ends of the earth with you if necessary.

During Emerson’s NICU stay we were visited by a number of family members (at different times, of course). These visits were so special to me because they gave me a chance to do a few things:

  1. Show off my cute baby like all new, proud moms do (lol).
  2. Help our families really understand what we were going through.
  3. Be loved on.

When there’s a new baby in the family, it’s so natural to want your closest family around to be introduced and start to love on them. NICU life makes that part very different. Fortunately for us, the NICU at St. Joseph’s Womens Hospital has a separate room for each baby allowing privacy and visits from whomever the parents would like. They ensure everyone follows the proper protocol of washing their hands upon entering, and as a parent, you know all the protocols anyway, so it’s pretty easy to direct your close family and friends on what they need to do to safely see your baby.

These visits were invaluable because I think it helped make our situation even more real to our families. It’s one thing to hear it over the phone and completely different to experience it in person. Even today, with Emerson being home, our lives are still vastly different in comparison to a family that had a full term baby. Every time we FaceTime or they come to visit, they get a peek into our life. It shows them how far Emerson has come and how our little family is thriving in the midst of all the doctor’s visits, prescription refills, daycare drop-offs and pick-ups, nurse’s updates, case manager updates, medical procedures, and more.

Right now, our cousins are in town, and it does my heart so incredibly good to not only see them and their kids, but seeing how excited the kids are to see Emerson and Emerson’s bright, smiley-faced reaction to seeing them. Watching them play makes my heart smile. They are his big cousins and they love him so much.

To the families who may be experiencing NICU life right now, if you haven’t already, consider having some family around. My suggestion would be a few people at a time to not overwhelm you, and allow them the opportunity to love on you. Also, help them better understand what you’re going through and what will be most helpful for you in such a high-stress, rollercoaster of a time.

To our families and close friends, thank you for continuing to love on us. Words will never be able to express how much it truly means to us. 💜

Holidays, prematurity

February 14, 2019

One year ago today, after having been together for 10 years (married for 5), my husband and I were the most excited we had ever been for Valentine’s Day. Valentine’s Day 2018 completely changed our lives and marks the major milestone of being able to bring our micro preemie home after spending 191 days in the hospital.

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Today, we celebrate having our son home for an entire year and being able to really love on him without the anxiety of going to the hospital every day. The year has been full of transitions with it now being second nature to…

  1. Juggle doctor’s visits with our work schedules
  2. Order medicines and medical supplies each month
  3. Change his trach weekly and change his trach ties each day
  4. Change vent circuits weekly
  5. Pop his g-tube (feeding tube) back in when it randomly gets pulled out
  6. Know his baseline medical numbers and see the signs when we need to seek emergency care

This is just a tiny glimpse into how our life transitioned over the last year with having Emerson home. Since being home, Emerson has been thriving socially and developmentally. His personality lights up the room and he is a master at crawling. He loves books, toys with lots of sounds, Paw Patrol, and Dr. Seuss. He is getting better and better at balancing his own weight and standing without holding on to anything. We are also at a point where we can have him taste foods, which is the first step to having him eat by mouth. It is amazing how much he has grown and changed since being home.

While bringing him home was the best Valentine’s Day gift ever, it does not mean we have not had struggles along the way. Getting adjusted to having home health nurses was definitely interesting, but we have found our stride and have great nurses who love Emerson. We have also had a few emergency room moments, which were extremely scary. Throughout it all, we learned to trust ourselves and that we know our son. We are always trying to be proactive and anticipate when Emerson may be getting sick or needing more respiratory support.

We are so thankful for this day and know that Valentine’s Day will forever hold a significant meaning for our family. I feel confident in speaking for my husband and saying bringing Emerson home was the best Valentine’s Day gift either of us have ever received.

Holidays, NICU Life, prematurity

The Difference a Year Makes

One of the features I enjoy about Facebook is the memories. I love that it gives you a reminder of what you were doing on this day last year.

All week, I have been so excited and thankful to have our first Christmas at home with Emerson. However, it wasn’t until just a few moments ago when I saw this picture in my Facebook memories that I really started to remember where we were a year ago with Emerson in the NICU and all of the emotions that came along with that:

He was so little compared to now and, unbeknownst to us at the time, still had a long way to go before we would be able to bring him home. When I sit back and actually sift through all those memories of what was going on then and how challenging it was living at the hospital, but trying to also keep up with our regular adult responsibilities, I am more than grateful for where we are now. This Christmas means so much to us.

Being able to share our Christmas traditions and watch him thriving is truly a blessing. Emerson is now crawling, trying to stand, making lots of sounds, and even able to taste baby foods. He has come so far from where we were last year at this time.

To all the families spending Christmas in the NICU, we are thinking of and praying for you. Remember that while it is very challenging, your Christmas experience will be what you make it there. (We would play Christmas music for Emerson and read him stories.) Try to make the best of it and just enjoy your little one.

Merry Christmas Everyone! 😘

NICU Life, prematurity, Thanksgiving, Uncategorized

Happy Thanksgiving

When I think back to exactly one year ago, thankful doesn’t begin to cover it. My husband and I closed on our home the week before Thanksgiving, and in the month or so leading up to it, I remember being hopeful that Emerson would be out of the NICU since we were told to use my original due date (11/12/17) as the estimate for him coming home. However, this did not happen.

The day after closing on our home (11/16/17), we were moving in and I remember getting my daily update call from the doctor. After that call, I sat in my kitchen floor in tears. We had just been told that Emerson was sick with rhinovirus. This was his first time testing positive for it, and we were extremely worried especially with him being as small as he was (about 4 or 5lbs). This caused him to have to be intubated again. (For those of you who aren’t familiar with that, it is when they stick a tube down the trachea that goes straight to the lungs to help provide breathing support.) Emerson had been extubated for a while, so naturally this felt like a major setback. As I sat there in my tears, I felt completely helpless. All I knew to do was pull myself together and pray.

The following week was Thanksgiving, and my mom and aunt came to town to celebrate with us. We went to see Emerson and were told that he self-extubated, so they tried to keep the tube out. (He did end up having to be intubated again, though.) Needless to say, I don’t think he was too happy on Thanksgiving last year…

This year is completely different and we have come so far! Emerson is home and thriving. He even went with me to pick up our honey baked ham yesterday:

This is why I say the word thankful doesn’t begin to cover it. My heart is so full when I think of where we are now and how far Emerson has come. I am more than grateful, thankful, and blessed. Everyday, I get the opportunity to be the mommy of a little boy who I believe has been born to slay giants. The initial fight he had coming into this world and his continuous fight to grow and thrive is preparing him for his amazing future.

So to those families who may be celebrating Thanksgiving in the NICU, we understand how that feels and encourage you to stay positive and be thankful for whatever progress your little one has made thus far. You are in our thoughts and prayers.

To everyone else, Happy Thanksgiving from our family to yours!