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

Celebrating Emerson

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. 💜

prematurity

A Huge Milestone

It’s official. Emerson is trach free!

Three weeks ago, we went in for the procedure to start the trach removal process, and after spending two nights in the hospital, we came home trach free.

The days leading up to the procedure were filled with a flurry of emotion. I was excited and nervous, but hopeful for the best. We knew there was a chance that Emerson might need a more extensive surgery to remove the trach depending on the condition of his airway and his body’s ability to heal.

Going into the hospital on July 7, exactly one month away from his 3rd birthday, Emerson was completely unbothered. He was his typical, happy, smiling self. Even in the pre-op room, we played, sang songs, and talked to my husband on FaceTime. We even took a few selfies…

After signing the appropriate consent forms, the nurse and anesthesiologist took him to the OR. I headed to the waiting room where I sat for maybe an hour before Dr. Mitchell came to me with an update and pictures. He said Emerson did great and talked to me about the photos he took of his airway and the expectation that he would do well with the smaller, capped trach before completely removing it the next day.

About 30 more minutes passed, and the nurse came to get me and took me to Emerson. He was out of it due to the anesthesia. We sat there for about another 30 minutes until he woke up a bit more. Of course we knew he was awake when he could hold his tablet.

Once fully awake, the nurse put a red cap on the end of the smaller trach. This forced him to adjust to breathing through his nose and mouth. We were taken to a hospital room on the regular children’s floor. For the first time, we were not headed straight for the pediatric intensive care unit (PICU). We got settled and shortly after, Emerson did not want to be in bed. The anesthesia made him super cranky and only wanting to be in my arms. I held him while we sat for about two hours, during which he got a tube feeding and finally took a nap. He woke up in a much better mood and acting more like himself.

The next day in the hospital I was excited and nervous again. Our ENT’s nurse practitioner came to check on him and said he looked good and took the small trach out. Emerson was completely unphased.

Now, it has been three weeks and he has been doing amazing without the trach! I could not have imagined a more seamless transition. He is still eating by mouth as he normally would (purées and soft solids) and his oxygen saturations are 99-100. His stoma (the trach site) has almost fully healed with no issues. He is also VERY loud these days. 😊 We are working on teaching him the concept of “inside voice”. However, it’s such a joy to hear his little laughs and him singing and talking all the time now.

I will never be able to fully express how grateful I am for this or even how proud I am of Emerson. I thank God everyday for allowing us to experience this miracle up close. We are so blessed to be his parents.

COVID-19, development, mommy blog, prematurity, Tampa blogger

Preemie Mommy Reflections & Amazing News

My journey to motherhood was quite different than my expectations. No baby shower, no feeling the baby kicking at night, no making it to my third trimester, no gorgeous maternity photos. Instead, it was filled with anxiety and uncertainty, ironically, a lot of what we are experiencing in the world right now. It was only by the grace of God that I remained hopeful and steady throughout, even when I had a moment or two of breakdowns where I just had to let it out.

Even today, my experience as a mother differs quite a bit from many others. Mine is filled with trach changes, putting g-tubes back in, ordering and administering medication, ordering medical supplies, and keeping track of many doctors’ visits. It sounds like a lot, but I am grateful for it. Every day, I get to be the mom of a miracle. I look into my son’s eyes and am consistently in awe of how amazing he is and how much I never imagined him getting to this point. My focus has always been the present and while I knew he would grow and develop, I have tried not to let myself think too much about it as a way of not placing unrealistic pressure on him or myself as a mom.

Yesterday, we received some amazing news: Emerson’s decannulation will be on July 7th! Yes, the trach is coming out! I am so filled with emotions that I don’t know what to do. When I think about all that he has endured and overcome, I just thank God for creating this strong little boy and choosing me to be his mommy.

Lately, I have been struggling a bit with recognizing that the issues you experience as a preemie mom do not always stop when you leave the hospital. For us, there have been many hurdles after that, and while more recently, our focus is on the huge hurdle of eating, knowing that his trach will be coming out soon gives me comfort. It reminds me that we, as his parents, have done and are doing our best. He is developing at the rate that is best for him, and I am so proud. This journey hasn’t been the easiest, but it’s one that I am so grateful for. I have grown in ways I never could have imagined. 💜

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

The Celebration Continues

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. 💜

prematurity

The Day You Came Home…

Today is a special day to many, but extremely special to us. Yes, it’s Valentine’s Day, however, it’s also the day that Emerson came home from the hospital two years ago. I will never forget that day. The excitement, nervousness, and relief I felt all at once. This day was the culmination of the first 191 days of Emerson’s life coming to an end and the beginning of our new normal at home. Grateful doesn’t begin to express my feelings for him coming home.

Today, it is an honor to have him experience his first trip to Disney to celebrate bringing him home. Watching him enjoy the Disney Junior Dance Party and Toy Story Mania was a feeling like no other. My baby is getting to be a real kid! Going through NICU life and coming out on the other side makes me incredibly grateful for every milestone and experience he has whether big or small. I know it didn’t have to be this way, but we were blessed to have a miracle baby. I sincerely hope our family’s story helps others to remain faithful and hopeful through their NICU journey.

Happy Valentine’s Day 💜

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

At Their Own Pace

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!

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!

prematurity

Emerson is TWO today!

Oh how time flies! I cannot believe we are already celebrating Emerson turning two today. As you probably guessed, I am in full reflective mode remembering everything that happened on this day and leading up to it.

I’ll never forget the look in the doctor’s eyes after seeing the doppler ultrasound, which I had been having everyday for a week (while on bed rest in the hospital) to view the blood flow through the umbilical cord. The issue was that there were times when the blood was flowing away from Emerson, which put him at a very high risk of being stillborn.

On August 7, 2017, I’d had enough. The look in the doctor’s eye and her telling me that she truly did not know what condition Emerson would be in completely broke my heart. I was so emotional with many thoughts racing through my mind… feeling completely helpless. I said to my husband, “I just want this to be over”. I was tired of being in what felt like a holding pattern and I just wanted to know exactly what we would be dealing with one way or the other. Well, God definitely listens because maybe an hour or so after I spoke those words, my obstetrician came in saying she would need to do an emergency C-section due to my liver enzymes increasing (this is one of the signs of preeclampsia). I was relieved and scared all at the same time. Immediately, I started praying (yet again). I had never had a major surgery in my life and my greatest fear was that my child would be born with no mother.

Now, two years later, I have the most incredible testimony to share, and I truly hope that it helps and inspires others. I tell people all the time that I live with a miracle and it is so amazing. I cannot thank God enough for that. Everything Emerson does or says is so special to us because in the back of our mind we always see that 1 pound baby who was the size of my husband’s hand and stayed in the hospital for 191 days. Emerson’s life is emphatic proof of God’s mercy and grace. I am so thankful for him and beyond excited to celebrate him turning two! 💜

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!