Category: NICU Life

mommy blog, NICU Life, prematurity, Tampa blogger

September is NICU Awareness Month!

Mars

Well, it’s been a while since my last post, and there has been so much happening in the last year! Between being a wife and mom, trying to have some level of self-care, and the general managing life through the pandemic, it’s been challenging. However, I could not let this month go by without sharing a few thoughts about the NICU and driving awareness around that experience.

While your baby may leave the NICU, the NICU never really leaves you. I’ve learned this over the past 3 and a half years as Emerson transitioned home from the NICU after his 191-day stay and we settled into our new normal. Even today, living through the pandemic has taken me back to some of the feelings I experienced when Emerson was in the NICU: alone, anxious, and helpless. Just like back then, I have the faith that everything will work out as it should, however, that does not negate my feelings as I am living through it.

Like I said, during Emerson’s NICU stay, I felt alone, anxious, helpless, and honestly many other emotions too. I was literally on an emotional rollercoaster the entire time. Some days I felt relief and happiness, while other days I felt depleted and jaded. It felt like people who did not live the reality of the NICU couldn’t fully grasp what my family was going through despite their thoughtful attempts to try. And how could I expect them to? My family was walking the path of uncharted territory to many of them.

The NICU is such a different world. It’s full of loud sounds, medical jargon, rules/protocols, nurses, doctors, respiratory therapists, lactation specialists, speech/feeding therapists, occupational therapists, and the list goes on and on and on… You meet so many people who are working to help your baby, and you learn so many new things that it overloads your brain. While you’re learning all these new things and meeting all these new people, you’re trying to advocate for your child. Meanwhile, there’s the whole administrative piece of understanding what benefits may exist in your state based on your baby’s condition and reason for being in the NICU. For example, with Emerson being born at such a low birth weight (1 lbs 1.5 oz), he qualified for Social Security Benefits and Medicaid. This was another thing we had to apply for and manage along with our primary insurance as well. Imagine managing this while in an inconsistent emotional state from day to day and living with the general concern of “is my baby going to make it” while trying to remain positive and believe “my baby is going to make it”… it’s not the easiest thing to do honestly, and it’s most certainly no fun.

I share this peak at what a NICU experience can look like to shed some light on it for those who haven’t experienced it, and to remind those who have that you are not alone. You are not alone in dealing with the trauma you experienced or in having those feelings come back up from time to time and managing through that. You are also not alone in receiving comments/questions that don’t land well and leave you feeling worse when the intent was encouragement. I see you. I am you. I get it.

Going forward, I hope we can all help validate the feelings that come with having a NICU experience and the impact it can have in the way moms and dads experience life after the NICU. It is super important to be able to do this because it helps us NICU parents feel seen, heard, and somewhat understood. Remember, emotional support is just as important as sending a meal sometimes. 💜

Now, here’s a small piece of our family’s journey through the NICU…

My first time seeing Emerson; about 7-10 hours after giving birth
For scale… Emerson was the size of my husband’s hand!
Just a couple days after being born
My first time holding Emerson; about 1 month after he was born
My husband reading to Emerson while he was in isolation due to a respiratory infection
Our first family photo
Our current family photo; taken on Emerson’s 4th birthday last month
birthdays, development, mommy blog, NICU Life, prematurity, Tampa blogger

Celebrating Emerson

Mars

August has been a huge month of celebration for us. Emerson turned 3 on August 7th, and even though we are still living through a global pandemic, we were able to make his birthday special and memorable. We celebrated with a professional photo session with Warped Vision and drive by birthday parade with local friends.

This birthday was special for a number of reasons, but most notably, being a marker of the point we have reached in Emerson’s development. Not only is he trach free, but he is also eating most of his calories by mouth and working on drinking out of a cup. He is talking more and putting words together to make small sentences. I am even noticing he is doing better at listening when we ask him to do something (which is no easy feat for a toddler).

Last Tuesday, Emerson started preschool (virtually), and I am still in disbelief that we are at this point already. It seems like just yesterday, I was watching his little 1 pound body in his NICU bed wondering when I would be able to hold him. Now, I get all the cuddles all the time. I am so proud of how far he has come and excited to see him blossom this year. I am praying for a healthy, safe, and smooth preschool experience for him.

This Tuesday, Emerson will start going to preschool in person. I am so proud that he was able to handle the first week being virtual and excitedly nervous about this transition. My husband and I have been prepping all weekend by making his meals, ironing his uniforms, and packing is backpack. We are real school parents now!

Being at this moment in time makes me feel more blessed than anything. It is a joy to experience all these milestones and see Emerson’s personality continue to shape and shine through. What an honor to live in the presence of a miracle. 💜

birthdays, COVID-19, Holidays, mommy blog, NICU Life, prematurity, Tampa blogger

The Celebration Continues

Mars

March 2020 has been a complete whirlwind. I always look forward to March because both my husband and I celebrate our birthdays: his is March 7th and mine is March 30th. This year, we could have never planned for what this month has become: A month of quarantine and social distancing due to COVID-19.

The social distancing hasn’t been too much of a shock to our family because we spent so long in the NICU (191 days). I’ve seen memes going around that say how NICU families are made for this type of thing, and it’s true. I remember many times where Emerson was in isolation due to being sick and even less people than normal could be in his room and anyone entering the room needed to have a gown, gloves, and a mask. The difference is that now essentially we are having to live this way in the world rather than one room. Also, the fact that it’s due to a new virus that has no cure or vaccine yet, which is scary to think about.

Admittedly, I have been slightly bitter/sad about my birthday and not being able to celebrate as planned with a spa day and dinner with friends. This probably sounds like something I should just get over or not a big deal, but I am one of those people who LOVES birthdays and feel like they are kind of a big deal. I also felt sad that my husband’s birthday plans fell through at the beginning of the month when we had to cancel our trip to NC. Nevertheless, we have persevered and made the best of the situation. I was able to take my husband to a nice dinner (before all the restaurants closed their dining rooms) and get him a nice gift in place of the trip. For mine, we were able to have a virtual party with my friends, which was so much fun! We ended up chatting for almost 4 hours with anywhere from 11-16 people on at a time. It was so great to spend that time with friends and do table topics while talking about shows, movies, and whatever else came up. I was reminded of two things that night:

  1. How amazing my friends are
  2. How much they genuinely care for me

I do not take either for granted. What I appreciate most is the grace they all show me by being able to pick up right where we left off no matter how long ago we may have spoken or spent time together. I think we all understand that there’s a lot going on in our adult lives that we have to manage and I am just grateful for the grace they have all shown me and for still “showing up” for me.

(My friend Crystal sent me this photo of her view of my virtual party.)

During this time of social distancing and staying home, I would encourage you to take some time to connect with your friends and family virtually. It’s easy to be anxious and worried at a time like this, but a good way to combat that is through being connected. It reminds us that we are all in this together and not suffering alone. If there’s something special to celebrate, like a birthday, don’t let COVID-19 bring that to a halt. Celebrate virtually, and have so much fun doing it. I promise it energizes you and makes you feel just as connected as a typical in-person celebration because the point of it all really is the human interaction.

Lastly, my heart goes out to all the families currently living in the NICU. I don’t know the details, but I am sure that more stringent protocols have likely been put into place to keep the babies and families safe. Although, it’s for the best, I understand how that can make what you are already living through more stressful. Know that we are thinking of and praying for you during this time. 💜

development, mommy blog, NICU Life, prematurity, Tampa blogger

At Their Own Pace

Mars

Development can be a sensitive subject. Some parents (I think moms in particular) measure their success as a parent in terms of how their child is developing. So I tend to cringe any time I hear questions asked about development (ex: are they walking yet or why aren’t they walking yet). The thing about development is that while you can certainly help with your child’s development, at the end of the day, they develop at their own pace.

Having a micro preemie, one of the things I heard a lot was that I should expect him to be behind developmentally, but that he would likely catch up. Now that my son is two, I see what they meant. However, because I don’t have other children, I don’t necessarily think of it as him catching up, rather, it’s just his own pace of development.

However, now that he has accomplished so many developmental milestones, I find myself somewhat anxious about him continuing to move forward. Prime example: we are trying to get him to point things out to us, and he just doesn’t right now. It seems like something so easy, and I think because I know he knows what certain things are, I feel like he should be doing it. But alas, he’s not. This is when I have to remind myself that it’s at his own pace.

The outside world already places enough pressure on our children and is ready to quickly define them based on a number of things. We as parents are their safe space. It can be tough to walk the fine line between pushing them to develop, and pressuring them to develop. In the end, I think we all want the same thing for our kid(s), which is for them to be healthy and develop to the best of their abilities. We also tend to be on high alert for signs that they may need a little extra help developing in certain areas. For example, my son sees both a physical therapist and speech therapist, which is a huge part of why he’s come so far after a 191-day hospital stay.

Do you also struggle with this? I would imagine it’s likely something that moms of full-term babies probably deal with as well. I would love to hear your stories about how you manage the art of not adding additional pressure to your child because you are ready for them to move forward in their development, so please feel free to share. We are all in this together! 💜

**Update: When I originally started drafting this last week, Emerson would not point at anything… now he’s pointing to his nose! 😊

Holidays, mommy blog, New Year, NICU Life, prematurity

Welcome to 2020!

Mars

Whew… time flies! I know it has been a while for my last post, but you would not believe all of the things that have happened between my last post and now:

  • Emerson being sick
  • Travel for work
  • Emerson being sick
  • Travel for work
  • Emerson being sick…

Okay… I think you get the point. Fall 2019 was filled with weeks of Emerson being sick due to catching some sort of respiratory virus. We were in and out of the doctor’s office with him on almost a bi-weekly basis. It sounds grim, but the positive side of it is that during this cold/flu season, we have not had one time where we had to take him to the emergency room! This is completely a step up from last season where we had about 3 emergency room visits due to respiratory viruses. The thing you don’t think about as your child gets older (or at least I didn’t think about because I was more concerned with his health issues as it pertains to him being a preemie) is how much their access to germs increases, which of course increases their likelihood of getting sick. My feelings around this felt somehwat conflicted because while I was celebrating the fact that Emerson was thriving and catching up developmentally, I was also stressed about him being sick so much. However, with a lot of faith and prayer (as well as cuddles with Emerson, date nights my husband, and support from family and friends), we made it through this stressful time.

Fast forward to the holidays. Thanksgiving and Christmas were great. We were even able to take Emerson to North Carolina to visit family and friends a couple of weeks before Christmas. Needless to say, we had concerns about the weather change and all the things that could go wrong (especially with him having been sick so much in the months prior), however, he handled it like a champ, and we had no issues during our trip. We had an amazing time watching Emerson play with his slightly older cousins (ages 5 and 6) who are so protective of him.

Now, we are on to 2020. I am currently on my first work trip of the year, and missing both of my guys, but I will be headed home soon. Entering 2020 has made me reflect on the past, but also look forward to what is to come. In 2019, Emerson:

  • Began taking more pureed foods by mouth (up to 8 ounces!)
  • Started matching shapes using the block shape sorter toy (we still aren’t stacking yet, but he’s coming along)
  • Started counting to three when prompted (and when he feels like it)
  • Started using his passy-muir valve daily (this device goes over his trach to restrict his airflow so that he is able to talk and project his voice)
  • Came off the ventilator during the day
  • Battled sickness from home instead of the emergency room

This week, Emerson had a sleep study, which puts us one step closer to him being completely off the ventilator. Thinking back to August 2017, I could not have imagined all that we have been through nor that we would be where we are right now. Emerson has been home and thriving in spite of having to spend 191 days in the hospital. We are more than grateful for his progress and looking forward to all the milestones he will reach in 2020. If you are a fellow NICU mom or family, I hope this encourages you. Regardless of what stage you’re in, celebrate the wins no matter how big or small. Here’s to an amazing 2020… wishing the best for you all.

Happy New Year!

Father’s Day, Holidays, NICU Life, prematurity

Happy Father’s Day

Mars

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!

Mars

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! 💜

Holidays, NICU Life, prematurity

The Difference a Year Makes

Mars

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

Mars

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!