Tag: medical

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. 💜

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.

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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.