Appointments, appointments, and more appoinments

When we brought home our micro-preemie from the NICU, we had 2 pages printed out for us of follow-up appointments. It’s been almost 4 months since we brought him home, and there’s still one specialist we haven’t seen. We have to travel 2.5 hours for some appointments, but most are 20-45 minutes away. some weeks, we have up to 4 days of scheduled appointments

Who do we have to follow-up with?! You name it, we have to see them. Well, it’s not actually THAT bad, but there’s a lot. Besides routine pediatrician visits, we see ENT(failed hearing screening), endocrinology(mild metabolic bone disease), nephrology(high blood pressure), cardiologist, pulmonologist, opthamologist, and NICU clinic. We’ve finally made it to where they are scheduling at 3-6 months out instead of seeing us so often! It’s all so intimidating and can take hours by the time they do X-rays, EKGs, ultrasounds, echocardiograms, and lab work. We are just so thankful that everything has shown improvement this far. Our only major issue is his hearing. I’m praying and trusting for another miracle, because I know God is the true physician and healer.

We came home on 1/8 of a liter of oxygen, pulse oximetry monitor, and an apnea monitor. The main reason for still being on oxygen, is because it’s RSV/flu season. Yesterday, we went for a pulmonology check-up and he decided to go ahead an order the overnight pulse of study. Yay! So, when we get that monitor, it will record his oxygen saturation at all times throughout the night and let them no if he’s ready to come off of oxygen.  We are excited to be to this point, but nervous to be without everything. I’m so used to tubing, wires, oxygen bottles, and alarms-I’m not going to know how to act.

We are super proud of our little guy.

These preemies are such fighters and miracles. They are reminders that we often take too much for granted. These preemies give you hope, they show us just how fragile life is. They show us the power and mightiness of God. They show us what a true miracle looks like. They show us just how strong we are, when we don’t think we have the strength to go on… you have to go on and fight for and with these babies. They help you discover your voice. You are their only advocate. They are depending on us as parents to be their voice. Don’t be afraid to speak up, ask questions, or even call out mistakes or things you don’t like about their care.

Being in the NICU with a micro-preemie is a long, difficult, trying time. It’s described as a rollercoaster ride, full of ups and downs, highs and lows. Good news one day, not exactly what you want to hear the next. Like I’ve always said, it’s ok to cry, it’s ok to be upset, and it’s definitely ok to smile on the good days. Hang in there, being a NICU parent isn’t easy, but you, too, can do it!

When my heart is overwhelmed, lead me to the ROCK that is higher than I. Psalm 61:2

Micro-Preemie Life

Whenever you plan on starting a family, you have in your head a healthy nine month pregnancy. At the end of this 9 month journey, you envision bringing home a healthy, happy bundle of joy. You know that there will be sleepless nights and around the clock feedings. You know that you will be completely exhausted and you will no longer put yourself 1st, because this little life that you’ve been blessed with is worth every single second of lost sleep, dark circles, and pure exhaustion that you are feeling. This is how it was for baby #1. It took us a year of trying to conceive to finally get that positive pregnancy test. That wasn’t without the help of fertility drugs. That was with a lot of prayer, and finally realizing that it would happen when it was meant to happen. That meant taking a lot of pressure off of ourselves and quit blaming ourselves for things that were out of our control. One year is a long time to want something so bad and feel like it is out of your grasp. One year is nothing compared to what some experience, but at the time, it felt like it would never happen.

In August of 2012, we FINALLY got that positive pregnancy test!! I had a smooth, healthy, complication free pregnancy. I actually LOVED being pregnant! On April 30, 2013, we welcomed our 8lb 8oz baby boy into the world! Trainer was completely healthy and absolutely beautiful!

Fast forward 3 years…

We knew that we wanted to have 2 children. When Trainer asked if he could have a baby sister, I told him that we would just have to pray about it and ask God to bless us with another baby. So, our 3 year old prayed.

A little over a month later…February 13, 2016…POSITIVE pregnancy test! To say we were shocked is a total understatement! We were blown away and super excited!

I knew this time would be perfect! I was in the best shape I have ever been in my life. I was working out at least 4 times a week, and was in running half marathons. I continued my working out after I got the O.K. from my doctor and I was feeling great! No sickness! No problems! Perfect ultrasounds and check-ups. We found out we were having a boy, and we were pretty sure we were going to name him Jase.

On June 25, our life changed. In an instant, it felt like our world was caving in on us. I started bleeding…pouring! I was only 24 weeks and 5 days into this pregnancy. I can honestly say that I don’t think I had ever been so scared…EVER! I had just felt him moving that morning. I had just used a Doppler and picked up a good, strong heartbeat! (Thank the Lord for this Doppler). While on the phone with my Dr., I was able to tell him that I had found his heartbeat and it was in the 140s. After getting to the hospital, I was checked and already dilated. I was given magnesium (to try to stop labor) and a steroid shot (for Jase’s tiny and underdeveloped lungs). I was having some major contractions and couldn’t even feel them. How? I don’t know! We thought we had it slowed down, but they had parked me in a room next to the operating room, just in case. Well, it’s a good thing they did. Within just a few minutes of being put into a room, the contractions were unbearable and the bleeding was as bad as ever. My blood pressure dropped and after another ultrasound, they knew that Jase had to come out. The room was filled with tears and disbelief. Why was this happening? We still don’t know exactly why.

After an emergency C-section, Jase came out weighing 1 pound, 11 ounces. He had to be resuscitated and immediately intubated in order to have a chance at survival. I only got to see my tiny baby for a few seconds as they rolled him by heading to the NICU. We didn’t know what to expect. Would he live? What would he have to endure? Why did this happen to us? Then, Why not us? I caught myself questioning God’s plan and His purpose.

All I could do that night was call and get an update. I was unable to go see him until the next morning. We really didn’t know all of the rules of the NICU. Not knowing what to expect when you walk through those NICU doors is a scary feeling. Seeing our fragile, extremely tiny, baby for the 1st time was like no other feeling I have ever had. I couldn’t do anything but cry. There were no words that could make me feel better. The emotions of guilt and failure, fear, sadness, anger were all trapped inside of me. Knowing that these 1st days were the most crucial, knowing that the only thing keeping him alive was a tube breathing for him, knowing that at any given moment we could receive devastating news. Having survival rates thrown at me by a Dr. our 1st week there and knowing that the survival rate wasn’t extremely high (better than what we had thought). We were made aware that there were so many hurdles that he would have to get over, many tests that would have to be done, and many precautions that would have to be taken. After 19 days, I finally got to hold our sweet boy for the 1st time. Feeling his tiny little body against mine made me the happiest mommy!
After 4 very LONG months of x-rays, ultrasounds, echocardiograms, lab work, bilirubin lights, eye exams, weight checks, medications, infections (thankfully there were only a couple), a spinal tap, PDA ligations, a few set-backs, speech therapy for feedings, blood transfusions, failed hearing exams, many tears, lots of prayers, sleepless nights…We brought Jase HOME! On October 27, 2016, we brought home our 7lb 14oz baby boy! He was eating like a champ and gaining weight like a champ and doing great!

Today, 3 months later, he is weighing in at over 13 pounds and thriving! He is reaching milestones and growing just like he should. We are still working with the ENT dr. and audiologist about his failed hearing screenings. (I will keep you posted.) Looking back to where he started and to where he is now, I am amazed. He is a true miracle baby! God brought him through it all and I know that He isn’t finished with him yet.

If you are reading this wanting to find something positive for your current situation…HANG IN THERE! It’s ok to cry! It’s ok to smile and rejoice on the good days. When they say it’s like a rollercoaster ride, full of ups and downs-highs and lows…they are serious! You CAN do this! You HAVE to do this. That sweet baby needs you! God will never leave your or forsake you!

If you want to ask any questions, feel free to contact me! I would be happy to talk to you, or just be your cheerleader!

For I know the plans I have for you, declares the Lord, Plans to prosper you and not to harm you. Plans to give you hope and a future. Jeremiah 29:11

Who Am I?

Welcome to Our Simple Chaos, a place to share life experiences, motivate, vent, give tips and advice, talk about our day, or even share a recipe or two. I am excited to have someone to share my thoughts with that I would generally keep to myself, give hope to those that may be dealing with a similar situation, and have a place to laugh about all of the chaos going on in life.

Who am I?  I am a Christian, a wife to my high school sweetheart, a stay-at-home mommy to two boys (Trainer and Jase), and a small business owner that I run out of my home. We just recently made the decision that I’d leave my job to be at home with our boys and I couldn’t be more excited!  I’ve  realized that time goes by way too quickly and I won’t ever have these moments again. Time is better spent building forts in the living room, catching lightening bugs (I’m from the south), making up bedtime stories, and making memories that we can cherish forever.

I am ecstatic to get to fill you in on what goes on in our simple, yet sometimes chaotic, life. Having two small boys, life around here is never boring. Trainer, our almost 4 year old, keeps us on our toes and entertained from daylight to dark. He is ALL boy and big bundle of energy that seems to keep building throughout the day. Jase, our 7 month old, keeps me busy in other ways. Jase made his entrance into this world very unexpectedly on June 25, 2016 at only 24 weeks and 5 days gestation. He weighed only 1 pound 11 ounces and was 12″ long. (This story is for another day!) Our world was flipped upside down and we would be spending the next 4 months praying harder than ever, learning new medical terminology, becoming nervous every time the phone would ring, driving 45 minutes one way to be with our newborn preemie, but filled with guilt for leaving our toddler. We learned that life can change in an instant and that we aren’t always prepared for what is in store.

Life isn’t always easy, and it’s not always fun or fair. In my opinion, it’s nice  knowing  about others’ similar life occurrences and knowing that someone else can relate. Whether it be something that you’re embarrassed about or something that has filled you fear, there’s someone, somewhere that’s lived it. Here, we can laugh together, cry together, or strategize together to get through this crazy thing called “life”!