Tag: micro preemie

COVID-19, mommy blog, New Year, prematurity, Tampa blogger

The First Month…

Mars

The first month of a new year is always interesting to me. It’s the time for planning out your year and trying to recuperate from all of the holiday activities. This January has been no different in that respect. However, it also almost always feels little long…

Transitioning back to work and our son back to school while still in a pandemic has been tough. With the COVID numbers being as high as they have been, my company made the decision to have all non-essential workers work remotely, which I am grateful for. However, Emerson still has to go to school and my husband still has to physically go in to work.

We were able to be COVID free for two whole years, and then here comes January 2022, and our son tests positive. In that moment, I was immediately concerned for what this would mean with his chronic lung disease history and also with him being too young to be vaccinated. To my surprise, his symptoms remained fairly mild (fevers and vomiting mostly, which is still no easy feat), and were almost completely gone by day 4. We are more than grateful that we never had to put him on oxygen or take him to the hospital. It was a blessing that we were able to fully manage it at home and keep track of his oxygen saturation and heart rate with the pulse oximeter. Now that’s not to say those 10-days of quarantine were easy for us… juggling work and a 4-year-old (especially once he was back to full strength) was a bit challenging. (See the photo below for proof.)

Really? On the sofa table, though?!?

So, I’m not sure if I’m the only one feeling like whew, I made it through January, but I just had to come here and say WHEW, WE made it through January, and I thank God for it! Although, we dealt with COVID head on and have lots of other things going on right now, there were a few positive things in this long month, one of which included me having the opportunity to be a part of my friend’s new podcast, which I am super excited about, and can’t wait for you all to see! I love opportunities to share and create awareness around what it means to be a preemie mom, so I am very appreciative for Tivi Jones and her company, Hey Awesome Girl. More details on the podcast episode coming soon!

Here’s to a positive and hopeful 2022… Stay safe and be blessed. 💜

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. 💜

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

Preemie Mommy Reflections & Amazing News

Mars

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. 💜

prematurity

Emerson is TWO today!

Mars

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

Mars

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

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! 💜

prematurity

The Incredible Thing That Happened…

Mars

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

Mars

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

Mars

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.

jrp_6089

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.