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!

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Prematurity Awareness

November is Prematurity Awareness Month, and yesterday was World Prematurity Day. So, while this post is technically a day late, I couldn’t let this day pass without acknowledging Prematurity Awareness.

About 2 weeks ago, my son unexpectedly ended up in the emergency room and was then admitted to the pediatric ICU. It was suspected that he may have had pneumonia, but thankfully, that was quickly ruled out. He did not have RSV or the flu, but tested positive for rhinovirus also known as a common cold. Perhaps you can imagine how scary it is to have your child taken to the ER and in the PICU for a common cold. This entire situation tells you a lot about what it is like to raise a micro preemie.

No matter how old Emerson gets or how well he is doing developmentally, we still have to be extremely vigilant over every detail as it relates to him and his health. By our faith, we know that he is already healed from his chronic lung disease that requires him to have a trach and ventilator, however, we also know we must not take that healing for granted. We have to do our part in being good parents to him and recognizing that we have to be a little more careful with him than perhaps you would a child who was a term baby at the age of 15 months. This means not being around people who are even remotely sick or haven’t had the flu shot and not allowing people to touch or hold him without first washing their hands and sanitizing. It also means giving albuterol treatments at any given time when he is displaying signs of respiratory distress, recognizing his baseline oxygen saturations and when those are not normal, and changing his trach more often because he may have mucus plugs blocking his airway.

I can’t tell you how blessed we are by how far Emerson has come. We are still on the journey, and even with all of the nuances, we love it so much. Having a micro preemie has taught us so much about medical procedures, diagnoses, medications, tests, and more. If you have any preemies or micro preemies in your life, cherish them and their parents. This road isn’t easy, but it is a road that shows you the strength you never knew you had.

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High Risk Hope

High Risk Hope is an organization that provides support to moms and families facing pregnancy challenges and/or life in the NICU. In my case, I experienced both. My pregnancy was deemed high risk upon learning that Emerson was growth restricted at around 16 weeks. Being admitted to the hospital at 24 weeks and 5 days, I remember the feeling of uncertainty I had and honestly, being a bit scared. After spending a full week on bed rest, I will never be able to explain the feeling and tears of relief I felt when I heard Emerson crying when he was born. That one moment of relief was overcome with more feelings of uncertainty shortly after because I knew the long journey we were in for and that my son would have to fight.

Now that I am on the other side of NICU life, it is so important for me to bring awareness to what families go through and organizations like High Risk Hope (HRH) that make an impact on our lives everyday. I remember receiving my Bed Rest Bag from HRH, and I was so thankful and honestly surprised. There was a number of useful things in the bag to help through my hospital stay, but the one thing that meant the most to me was the purple blanket. I immediately started using it and still use it to this day.

I am grateful to have the opportunity to give back to this organization and our community by walking in their annual Tot Trot. Our team is Emerson’s Brave Champions, and we are encouraging donations of ANY amount because no amount is too small. Click Emerson’s Brave Champions to learn more! Here is a visual representation of how HRH uses the funding:

Emerson was also voted to be in the HRH Calendar, and we are so excited for that! He was like a little superstar on the day of his photo shoot:

The HRH Calendar features so many babies who are truly little miracles. We are blessed to have Emerson be a part of it.

Thank you to everyone who has ever donated to this organization and those who will. HRH has had a great impact on our family, and it is an honor to be a part of the impact they will make on so many families now and in the future.

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Traveling Mommy

Well, it has been a while. Honestly, I have missed you! I have been living through the adjustment of being a working mommy who travels lately, and it has been quite the ride!

Recruiting university students to work for #mycompany, a major, global healthcare organization requires a lot of travel during the fall season. This is my first fall since having Emerson home, so it has been quite the experience. Many people asked what I was going to do about work prior to him coming home since my job requires travel, to which my response has been, “it’s my job, so we will figure it out”.

I don’t think there is any mom out there who elects to be apart from their child, however, when it is a job (and company) that you love and that helps you sustain life, you make it work. In my case, the majority of my trips are short and the bulk of the travel happens during Sept-Nov. Though I miss my son and husband immensely while traveling, I could not imagine being in a different role at this time. This is the work that fuels me and helps me live out my passion of helping others make an impact.

On the home front, I am so blessed to have my husband who is able to hold down the fort while mommy is away working, and does not mind doing it. This support from my husband means everything to me. It allows me to do what I feel I have been called to do in this season of my life, which helps me to have a healthy work-life balance. It also does not hurt to work for a company where the health and wellness of employees are prioritized and family truly does come first. I always know there is flexibility if we ever have a family emergency or something going on with Emerson.

I hope this can be an inspiration to other working and/or traveling moms who consistently experience mommy guilt because of it. Mommy guilt is easily harbored for almost anything because we want to be and do it all for our little ones. The reality is, we are only human and we have to be patient with ourselves. Here is my approach to getting through work trips and not allowing myself to be overcome with mommy guilt:

  1. FaceTime everyday (even if only for a quick 5-10min)
  2. Daddy sending at least one photo each day
  3. Countdown the sleeps until the last day

These may seem like small things, but they really help me when I am on the road. Do you have a job that requires time away from home? Do you live in the mommy guilt? I would love to hear your story in the comments!

P.S. Help us raise money for high risk and NICU families by donating to Emerson’s Brave Champions for the High Risk Hope Tot Trot!

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Emerson is One Today!

One year ago today around 3:00pm, I was told I needed to have an emergency C-Section. By 5:43pm, Emerson Neal Pounds entered the world crying. What an amazing feeling it was hearing him cry after our doctors had told us they didn’t know what state he would be in. Hearing that first cry, my husband and I began to cry and I breathed a sigh of relief.

Little did I know that he would spend 191 days in the hospital. I remember thinking “will I ever get to take my baby home” and the days of completely breaking down into tears because I didn’t know what to do. I feel beyond blessed to be sitting here a year later looking at my son (at home) and wondering how time went by so fast. Living in the hospital for those 6 months felt like an eternity, but little did we know time was slipping right by.

Jeff and I are so proud of Emerson and how he is thriving at home. We couldn’t have given him a better name as he is constantly proving the “Brave & Powerful Champion” that he is.

With how special today is, I thought it would be nice to share a few photos of our journey. Enjoy, and please vote for Emerson Pounds to be in the High Risk Hope Calendar Contest: https://www.highriskhope.org/contests/2018-hrh-calendar-baby-contest/

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Milestones…

Today, my husband and I are celebrating 6 years of marriage. Over the years, we have always traveled to celebrate and reflect on our anniversary, but this year is a bit different. We experienced our most challenging year yet with our son being born at 26 weeks. Through this year of learning to be parents and how to care for a micro-preemie, we grew stronger both individually and as a couple.

Words cannot express how grateful and blessed I feel to have the opportunity to do life with my husband. Now that we have made it through 6 years of marriage and almost a full year of being parents of a micro-preemie, I am excited to see what’s to come. I’m sure life won’t be without its challenges, but as long as we continue to be support systems for each other and maintain the balance in our relationship, I have faith that we will continue to grow stronger together.

To all the couples out there who have medically complex children, remember to be strong for each other and take time to nurture your relationship when you can. It’s very hard to do, but definitely a necessity. 💜

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The Blur that was June

It’s been a while…. June was an extremely long and short month all at the same time. Long because it seemed incredibly daunting looking at our schedule, then short because here it is already July. Between Father’s Day, Emerson’s surgery, two work trips, a personal trip, and having one of our nurses out for the month, I felt like I was in a whirlwind.

Perhaps the best part of June was the opportunity Emerson and I had to celebrate my husband on his First Father’s Day. I felt beyond blessed to have this time with him and be able to show him how much he means to us. Him being the amazing, hands-on, supportive, and loving father that he is allows me to be the mom I am. Emerson is already intently watching everything he does with adoration, and I love it. He couldn’t have a better role model for how to be a man.

Immediately after our Father’s Day celebration, we had Emerson’s surgery looming over us. Worried isn’t the best word to use, but it’s the feeling you have any time your child has even the most routine surgical procedure that the doctor has performed over a million times. That feeling of knowing that during any surgical procedure something could always go wrong no matter how low the probability. The surgery was to repair hypospadias. (Hypospadias is a condition where the meatus/urethra opening is not exactly at the tip of the penis, rather it is on the underside.) In addition to the hypospadias procedure, his eye doctor wanted to do a sedated eye exam to check his retinas.

After much prayer and about 8 hours of being at the hospital (including the wait time, pre-op and post-op), Emerson’s procedure and eye exam went well. We found out that his retinas look great and he isn’t even as nearsighted as his eye doctor originally suspected. The urologist said he did great with the hypospadias procedure and gave us our instructions for his care at home. This is yet another point of anxiety probably for any parent taking a child home who has just had any type of surgical procedure, but especially when it comes to an already medically complex child. As the urologist spoke to us, my mind begin spinning wheels and thinking we have to be on top of this and remember all the signs in case something goes wrong (i.e. an infection or any other potential recovery mishap).

Now, 2 weeks later, I’m more than pleased and grateful to be on the other side of the procedure and recovery. Emerson has proven yet again that he is a force to be reckoned with. His strength never ceases to amaze me, and I am still learning from him and he isn’t even a year old yet! The more I see him thrive, the more I know we gave him the perfect name. He is definitely our brave and powerful champion…

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Mother’s Day Reflections

Celebrating my first Mother’s Day with my husband and Emerson was amazing. In the midst of being super exhausted from traveling to Canada for work and NC for graduation, the day was still more special for me than I could have imagined.

I took the earliest flight back to make sure that I could share this special time with my boys, and they did not disappoint! Hubby had breakfast all ready and Emerson gave me the biggest smile ever when I walked in. In that moment, I had a flash of everything that led us to that moment: the high risk pregnancy, the hospital stay, the many blood transfusions, the procedures, and the list goes on. Grateful doesn’t begin to cover it. I felt more than elated and blessed to have this day and be celebrated as a mother by my husband and son.

The other thing I kept thinking about on that day and throughout this week was the many moms who have supported and continue to support me throughout my journey. I am grateful to have a community of moms that are following our story and care enough to check on us, provide advice when needed, and just listen.

Also, as an update to my previous post, I wanted you to know that I am indeed still pumping. After my own considerations and with all the encouragement I received, I am trying to stick it out. 9 months and counting…

P.S. I’m pumping as I write this 😉

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Exclusively Pumping: To Continue or Not?

Being a NICU mom almost always means that if you plan to do breastmilk, you will be an exclusive pumper. This experience is extremely different from a mom with a term baby who plans to breastfeed. In either situation, making the choice to breastfeed your baby is truly a commitment. It is even more of a commitment for moms who have to pump exclusively. This is in part due to not even being around your baby at all times. With baby in the hospital, it’s nearly impossible to always be with them, and even if you are, nursing just isn’t an option when it comes to micro-preemies. Therefore, the breast pump literally becomes your best friend. You take it everywhere you go and/or make sure there is one available to you (our NICU provided one in our son’s room for me). You’re up with it in the middle of the night, EVERY night… and between the constant worry about your baby and pumping around the clock, you become extremely tired and emotionally drained to say the least.

Shortly after Emerson was born and after being in the recovery room, my nurse helped me get setup to pump. I was told that I needed to pump for at least 15 minutes every 2-3 hours. Imagine how daunting this was for someone who had just gone through major surgery and had a 26-weeker in the NICU. With my body in its post-operative state, I couldn’t wrap my mind around just how I would have the strength to pump that often. Luckily, my husband was there to help with keeping my parts clean and ready to help make it easier for me to begin my journey of exclusively pumping. By the end of the week, I was in a good routine with pumping and starting to get a good amount of milk. After a few months in, I was averaging about 750-850ml (about 25-28oz).

Now, after almost 9 months of pumping, I am starting to become very jaded. I find myself going back and forth in my mind about the idea of completely stopping my journey before the 1 year mark (August). The fact that I have quite a bit of milk stored in our deep freezer is partially why I’m considering stopping although I know I don’t have enough milk stored up to make it to August. Here’s where I would love some advice/inspiration/comments: Should I stop pumping completely?

As tired as I am and as much as I want my life back, I haven’t brought myself to completely stop yet. I’ve already gone from pumping 8 times a day to 5 or 6, which has decreased my supply of course (because that’s what happens when you aren’t nursing and you don’t pump at least 8 times a day). I feel like I am truly at a crossroads… I could either try really hard to increase my supply through lactation supplements and pumping more often, or I could start to slowly wean myself off pumping altogether. What would you do?

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Medical Mommy

There’s a reason why I never chose a career in the medical field: I have no interest whatsoever in any of it. Is it interesting? Absolutely. Life saving and rewarding? Of course! Am I thankful for all of those who chose to go into the medical field? YES! However, I knew early on that I was not built for that type of work. Fast forward to now after having a child with a tracheostomy, ventilator, and gastrostomy tube, and I have become more medical than ever.

Living the NICU and PICU life for 6 months I learned a lot. My husband and I gained an entirely new language that has become second nature to us. Although I have been far from ever wanting to work in medicine, I leaned into learning all the new terms, the procedures, and hospital protocols. When you have a NICU baby, you want to understand everything that you possibly can because you have to always be an advocate for your child. This can be overwhelming to say the least especially if you are a person with no medical background like myself. Here are a few things that really helped me when the medical jargon started to feel overwhelming:

  1. Ask the doctor or nurse to explain it again. I did this so many times. I would always repeat the parts I understood then ask for clarity on the parts I didn’t.
  2. AFTER and only after having the conversation with your child’s medical team where you have gotten all of your questions answered and asked for further explanation, if you have close friends or family in the medical field, consult them. I stress after the conversation with your child’s medical team because you want to make sure you really understand what the plan/issue is before you speak with your friends/family. I have two close friends who are both pediatricians, and it definitely helped having them to sort of validate everything we were going through. They could also offer further explanation in a way that made even more sense because we are able to just speak as friends.
  3. Purchase a book. I didn’t do this, but some of my NICU mom friends did. If it makes you feel more armed with information, definitely purchase a book of NICU terms. There are quite a few options out there specifically geared toward NICU parents.
  4. Google. Most doctors probably won’t want to you to do this, and I only suggest doing it after you have completely understood what the doctor has explained to you. I used Google as more of a last resort when I could remember part of the word or if I just wanted to learn more about a particular thing. I always kept in mind the doctor’s explanation in order to not let myself go down the rabbit hole of potential self-diagnosing. If you choose to Google, just be careful with it.

I think the main idea here is remembering that it’s okay to ask questions and advocate for your baby. Arming myself with information sometimes helped me to feel more comfort within our situation. It helped me accept the idea that my son will always be considered a micro preemie and we must always protect him as such.

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