The Real Story About What Happened To Me This Past Year
I’m about to get real.
Like grab a tissue, or maybe at parts, even a glass of wine. This isn’t for the faint of heart. If you don’t like hearing about God and Jesus Christ, or about hitting rock bottom, or being paralyzed in fear, what you are about to read, isn’t for you.
If you enjoy an inspiring true story, with heart wrenching truths about my personal life and business, and more highs and lows than a Knott’s Berry Farm theme park, then this IS for you. Here’s the real story about what happened to me this year…
I made a decision when this all started happening that I was going to be open and honest about it. Here is me talking about it as if “oh everything is great! I can do this. I will stay strong.” I was being authentic when I wrote that, but I had no idea the horror that was about to come and how I would balance the personal and the business. I have written about some of the personal side of things in my private family blog, but never really talked about the whole picture publicly and that is what I am about to do here.
Why am I doing this? I don’t even know if there really is a RIGHT answer to that. I just know that this might be the longest post I have ever written. I feel like so many of you are so raw and venerable with me, that I might as well throw it out there for the whole world to see. I accept that if there is any judgement passed on me for what I am about to tell you that it has nothing to do with me and everything about the judger. Truth be told, it is also cathartic and the more you tell your story the more real it becomes (so I have been told) So, here goes…. In no particular order.
In the beginning, like I imagine when any traumatizing life circumstance hits a person, I was shocked. So shocked that I couldn’t pick up my hand to call my mother on the phone. But, I already told you a lot of the story leading up to the birth of my 12oz daughter. The story when EVERYONE told us “it didn’t look good” and that “babies that small don’t survive.”
(Seriously, think the Planned Parenthood babies they are talking about. Olivia was the size of a 22 week baby, even though she was 28 weeks. She is one of the 50 smallest survival female babies on record.)
I didn’t even quite believe it myself at the time, but I stared every one of them in the face and said, “SHE WILL MAKE IT.”
Fake it until you make it, right? That’s what I was doing. Privately scared out of my damn mind. The one thing I ALWAYS wanted more than anything in life, and I mean anything…. was an incredible husband and children. I am on record for saying in interviews that the most important job (in my mind/life) would be being a wife and a Mom. So here I am. I have the man of my dreams that I just married on 1/4/14 and then on 7/21/14 I am giving birth via a classical C-Section (oh yeah, much different than a “normal” one) to a baby that I am told won’t survive. We actually were given the option to abort 4 weeks prior. It was the first time I actually saw my big strong husband cry.
It killed me.
I remember going to sleep that night talking about the WHAT Ifs and a funeral v memorial service if it came to that. We decided to put it in God’s hands and every night I took out the doppler and stuck it on my belly. Still to that day, the sound of the heart beating is my most favorite sound in the entire world.
While the high risk OBGYN was “sewing” all 4 layers of my tummy back together she engaged me in a conversation about Turkish coffee. All the while I was wondering if my daughter was breathing or alive. I didn’t even get to see or touch her for two hours after the pregnancy. The room was sterile and cold. Things were beeping and dinging. A team of at least 20 people were rushing around doing things that I would soon over my 185 stay in NICU understand inside and out.
But that wasn’t even the toughest part.
The toughest part was learning to live life by the minute. Sometimes even second. Being in NICU presented so many life changing situations. First, I had to learn how to keep up with a team of Dr’s all talking about Olivia at a rapid pace in their Dr language. Then, I had to navigate through the joy that she was alive, but EVERY. SINGLE. SOLITARY. DAY. for at least the first three months they would tell me everything that was wrong with her. I will never be able to express how much I LOVE each and every one of those Dr’s and nurses, but NICU is a tough place. Mentally debilitating. I was pumping milk every 2 hours, then 3 hours. For any woman who has ever done that, you understand that each session is 45 min from set up to clean up and it is like a part time job. There are no cell phones allowed in NICU. I couldn’t hold my baby until her 21st day of life because she was too fragile. I mean her skin was translucent and her eyes were still fused SHUT!
I explain it that we got to see a fetus on the outside of the womb and gloriously lived to tell about it. We kept being told that we had to wait through the “honeymoon” period. (The first 2 weeks) because that is when micro premies can crash. In fact they are known to do WELL at first. So no one would even be happy and we were too scared to be.
Imagine giving birth and having months of a delayed happiness and relief that your child is here and alive? That doesn’t make logical sense. It goes against everything in human nature.
I learned what every single monitor did. I learned about all the systems of the body inside and out. I knew what blood tests were needed and what numbers we were looking for. I knew exactly what my baby was doing my watching a monitor and when I was holding her I wasn’t being told things like watch her expressions! Isn’t she beautiful. Oh she sleeps so peacefully. I was being told, watch her color. Make sure she doesn’t get dusky. Make sure that the CPAP or ventilator machines don’t get twisted up. There was dings and bings going off all the time for her *AND* you can multiply that my three because we shared a pod with three other babies…. It was always very tense. You didn’t know if it was your baby crashing (needing to be bagged and breathed for while they turn blue and their heart rate drops to the floor) or if it was someone else’s. I lost count of the number of times I had to walk away from her incubator because there were too many Dr’s, Nurses, respiratory therapists all trying to help her. I was in the hall way balling my eyes out. Sometimes while holding her it would happen to the other parents. I knew exactly how they were feeling and would almost go through that horror right there with them all the while trying to stay calm.
They prepared us…
NICU practically kicked Alex and I out for a weekend in Oct to go to San Diego. That was the only day that we didn’t see her but we knew she was in good hands with her primary nurse. Olivia was only 4 lbs then. they were telling us that she will need a ventilator and trach to breathe. For those of you who don’t know (because I sure didn’t before this happened) that is a hole in your throat with tubes coming out of it hooked up to monitors. They were telling us that we can’t just hop in the car and drive with her. Someone needed to be in the back sitting with her. They were telling us that we would have nurses in our house 40-80 hours a week and much more. They told us to go away because when we came back we weren’t going to be able to have a vacation anytime soon. I cried a lot that trip. How can you go be carefree on vacation while a chunk of your heart is laying in a hospital bed?
But I did. It was recommended by everyone. Including the therapist I was seeing. Yes, I admit that openly, proudly, and freely. It was much needed during that time in my life and I would encourage everyone to do it. You really learn a LOT about yourself and your thinking. I don’t know how I would have gotten through this all without it.
The Dr’s told us that it could be until she was 2 or 3 before she wouldn’t need the ventilator and trach. It was tough to tell. Basically she needed to “grow”
I was always saying, “give her a minute! she started off at 10inches 12 oz for God’s sake”
Let’s switch over for a second and talk business…
The ENTIRE time this was happening, my life was falling apart and I was hanging on by a thread, I still had a pet sitting and coaching company to run. Admittedly, I did almost no coaching. In lieu of that, I did create these “stop light confessionals” that I would film on my way to NICU each morning. It was bursts of motivation and people loved them. I loved doing them. (that reminds me, I should get back into it) See? I made my situation work for ME. See them here
…But the pet sitting, I couldn’t just crumble to the ground. Luckily, I have amazing staff who I was able to rely on. A staff member really stepped up and did whatever was needed in the office. She already was in the “office” on the weekends and she just took over 7 days a week and contacted me when she needed answers to things. That was the biggest blessing of all. I don’t even know if I can ever thank her enough. There was no way I could answer phones in NICU. I tried hiring a VA service and that blew up in my face. Oh, it was horrible. It is one of the reasons why I tell everyone in the Employee Quick Start Program to have your TEAM assembled before you need them. You can’t be doing these things when you are in the trenches and your mind not in the game. We simply told clients who asked that I was on maternity leave… which wasn’t a lie, but not the “maturity leave” I had so fondly dreamed of.
If I had a business that depended on ME, I would have lost all the years since 2002 I had been working so hard…. OR had I chosen to work and not be at NICU I would have missed out on a lot with my baby.
That is an interesting point.
HAVING MY BUSINESS WORK FOR ME ALLOWED ME TO BE BY HER BEDSIDE 6-10 HOURS A DAY. Do you understand that? Oh, I am sure those nurses were sick of me… but as I looked around, other parents had to work. I was there. That is probably the SINGLE most IMPORTANT thing that my companies have allowed me to do. BE THERE FOR MY FAMILY. I will forever be grateful. That is worth more than any paycheck I could EVER pay myself. EVER.
Can your business do that for you?
Back To NICU….
It was December. My in laws just came from Macedonia for 4 weeks. Oh it was so GLORIOUS to have them here. Never mind that they don’t speak English and I don’t speak Macedonian (yet… I am taking classes) They are the most fun, loving, understanding, nurturing, people I have ever met. They just left and Olivia was making WILD progress on the oxygen. She finally got off the ventelator and stayed off it…. she was weening down in her oxygen supply. She was up to 9 lbs and we were “cleared” to try the bottle.
ALL THE DOCTORS SAID SHE WOULD NEED A G TUBE BECAUSE SHE WOULD HAVE AN ORAL AVERSION. (…and we could have done this in Oct and just gone home then. But we didn’t. We gave her time. We waited. We were patient. We believed)
She took that bottle like a CHAMP. She sucked, swallowed, and breathed all on her own. I was crying (again, I know.) The nurse was crying. The nurse who was filming us (everything is documented) was crying…. we were all so proud of her.
A week later, on Dec 31st (Happy New Year) Dad was feeding her the bottle when the Dr came in and said we needed to stop and he needed to see us in the office. (I called this the principal’s office because nothing good ever happened in there) I was crying, again, telling my husband that I didn’t want to go in there. I didn’t want to hear what they were going to say. I knew it was going to be bad but I just didn’t have any more strength in me. For ONCE since JULY I was actually hopeful about Olivia’s progress… I was looking towards the future and BAM!!!!!!
Like a friken Mac Truck. I kid you not. All I hear: lung and heart…. collapse…. 100% need vent and trach…. Phoenix Childresn Hospital. And before I know it my husband and I are rushing over to PCH to meet a social worker to “show us around” before she left for the New Year holiday. She showed us a room and all I can remember thinking is, “Do these people think I am choosing a God damn hotel room?!??!” We couldn’t speak to any Dr. I just knew that PCH was the best option for these procedures and that is what we wanted for her. We didn’t have any other info other than she was going to be transferred on January 4th.
Do you remember that date? I wrote about it at the beginning. My husband and I’s first wedding anniversary. The gift? Take my daughter outside for the first time in her life in an ambulance to the local children hospital.
Joy.
I don’t even know how I made it through. It was like we were on another roller coaster. A bigger one. One day we were happy weening off oxygen and the next day we are on 100% vent support in an ambulance being told that the time had come for a vent and trach. That was what our life was like for 6 months. A drug addict probably had less highs and lows in their normal weeks!
…..and then God stepped in.
All that stuff I just wrote?
It was wrong.
Olivia was fine. They read the ultrasound of her chest wrong. She needed a valve plugged up and she would be “fine.”
Shock again. Afraid to be happy. Can this really be it? Can this really be all?
Guess what? It was. And 15 days later on Jan 19th, we were driving home with our daughter.
A day we had been praying for since July 2014.
You guys… there is so much to tell you. There are so many lessons. I can’t even begin to type the shock and horror I went through on a daily basis. We came home and she was on a feeding tube because she wasn’t taking full feedings yet. You have to remember she had JUST started to take the bottle and needed to work up to 4oz at once. It was like asking a newborn baby to drink at a 6month old baby level. It was going to take a minute. But not enough to keep us living at the hospital.
When we arrived home, we listened to the Dr’s. Until my inner Mama Bear came out. I started going against the GI Dr’s at the hospital and sought out my own professionals. The GI Dr’s wanted to put Olivia on a conveyor belt and treat her like every other kid they see and pop a GTube in her. We had a consultation with the surgeon for it. It was on the calendar. Insurance approved it, and WE CANCELED IT.
God came through again. I am fully convinced that the hands of God touched my daughter and healed her. There is no other medical explanation. Fast forward to today. We have no oxygen. We have no feeding tube. Olivia is taking her full feeds by bottle. Every day she is getting stronger. Physically she is like a 6 month old, which in my mind is exactly where she should be. She just “got out of bed” six months ago.
I had to tell you all of that (the short version) to tell you this:
The past year of my life has been the most excruciating I have ever had.
The Hard Reflections I Have Made:
1 – The systems and processes in my business allowed me to be full time at the hospital for six months, all the while still collecting my regular paychecks. Invaluable to me and my family.
2 – I know understand and respect the here and now. “Problems” aren’t problems anymore. I have perspective and I don’t borrow problems I do not yet have. Just remember, the SUN is always behind those clouds.
3 – My shoulders aren’t big enough for any of this. God’s are. He held us in his arms throughout this and He still is. I will always give Him the glory and I will always accept and respect motherhood as the #1 priority in my life. Everything (work) will work FOR that. It will work AROUND that. I have work so I can have a better Motherhood and opportunities for my family. It either matches up with that, or it doesn’t. A GREAT example of this is my private Facebook group. It is CLOSED on Sunday’s. Know why? Because I don’t want to deal with it on Sunday’s. I need one day to be “off” Could I get someone else to moderate? Sure. Would that promote what I believe? Nope. So guess what? It is closed on Sunday’s and I will delete people’s posts if they post. I know that everyone won’t stay off of FB but if I can keep one person from burring themselves online rather than connecting with people face to face or even themselves, then it is worth it. I believe in truly walking the walk. Leading my example. It is right for some and wonky to others. That’s ok by me.
4 – I have zero control of anything. All I have is my Faith, prayers, and inner strength. (which comes from God) I totally could have rolled over. I could have accepted the drugs to “get me through that tough time” but I know I needed to go THROUGH IT and not mask it. Let me talk about that for a minute:
When we got home:
I was petrified. I was militant with feedings, meds, everything. Being in the hospital for 6 months everything has to be exact. I WISH I had the Mommy problems of running up to my baby to see if they were still breathing because they were sleeping so nicely. I was truing to figure out how to be a mommy to a medically needy child. At one point I was giving her meds SIXTEEN times a day. I even had to put that NG tube down her nose, through her throat, to her belly, then check to make sure it was in the right place with a stethoscope, and then secure everything with the tape. All the while she is screaming in pain.
WHAT KIND OF MOTHER HAS TO INFLICT PAIN ON THEIR CHILD LIKE THAT? I was a crying mess ball many days… I felt so guilty that she was in this situation. I was grieving the loss of a 1/3 of my pregnancy. you know, the part where you gush about it all, have a baby shower, get pregnancy pictures, and tour the hospital? I was ANGRY that it was happening to me. I felt so sorry for my husband who felt helpless but so PROUD to say that the people that go through what we are going through have 90% failed marriages. Ours is the strongest ever. Every day I tell him “I would marry you again if I could” I have the very best man on the planet for me. I know why it took until I was 31 to get hitched. I know why everyone else didn’t work out and this year has proven that again and again.
5 – Support. I learned that there is no way I could make it through anything without support. Both personally from my extended family and friends and in business. I learned how to let go and delegate better than ever because I literally couldn’t be physically present for some of the things I needed. A great example is www.meetegar.com That man has saved my social media and helped my website rankings soar to an average of 300-500 visitors a day on the pet sitting website. I have listened to others, because that is sometimes the only thing you can do out of desperation. Sure, I made mistakes but as one of my friends say, I corrected and continued because that is all you can do. I hope that the next time something knocks you down that you bounce back up. It doesn’t matter how many times you are knocked down, what matters is how fast you get back up. Got it? LET PEOPLE HELP YOU.
6 – Be real and release. I cry a LOT. Practically daily. Today, it is moreso because I am so dang happy. But it is a release. You know what else I like to do? Sing! Although I am terrible and I am convinced that Olivia will be tone deaf listening to me but I am talking about belting out those FIGARO!!!!!!!!!!!!’s haha. Seriously. No joke. It releases so much stress. Sometimes Rocco joins in. (I am that good ha!)
7 – I am not strong. I wish people would stop telling me that. What I am is a decision maker. I refuse not make a decision and be paralyzed in fear which means to sit in murky, bacteria growing, gross waters. I want to be a river. Sure, I might run over a rock here or there. Sometimes I might even go off a cliff, but even that turns into a beautiful waterfall and then it keeps going… Do you catch my drift?
My 3 Stages:
I had shock and horror – That was until Jan 21st. Not knowing when I could breathe. What was “wrong” what tomorrow held. Being woken up at night with emergency calls.
Processing and fog lifting- That was Jan to about July. I experienced PTSD. There is no way around saying that. it is the truth. Only once we were home was I able to process the horrors of what had just happened.
“New Normal” – My new daily challenges are that she is cutting her molars and is starting to get into things. I WILL TAKE IT! I am feeling better. I am working out every other day. I am cooking dinners again. Doing the little things that make me feel like a good wife and mom (my own standards) I am CHOOSING to think of the past year as a BLESSING that I got to SEE God up close and personal. I am accepting that my husband and I were strong enough to HAVE Olivia and I shiver thinking if another pair of parents who wouldn’t be able to handle it all “got her” So I thank God for giving her to us all all aspects. The good, the bad…. but as a parent, that is what you do, right? Whatever it takes. I am choosing to get through it. Be real about the good days and bad days. I still get triggered. Movies are a great example. But I have my coping strategies that I learned because I opened myself up to that help. I chose to mentally work though it and not medicate and (personally) I am so thankful that I did and had the support of my family on that one. I feel like I was able to go through the dark times, feel it, process it, and then put it “behind me” I hope that makes sense?
I Clung To What Made Me Happy.
You guys, I have had so many emotions. COACHING has helped me feel normal. In a world where everything is spinning out of control, COACHING has allowed me the opportunity to make positive impacts on businesses. You see it online and in the FB group. People are making positive changes because of the guides, classes, and 1:1 coaching. That is my true calling. That is where my heart is. It isn’t so much about “selling” stuff. Yikes, why would I sit here typing for the past hour, pouring my heart out to you, if it was about that. I actually care about you. I believe SO MUCH in being transparent. Because I expect that from those I coach with. It isn’t a one way street. I have my faults.
We ALL HAVE CHOICES!
But this past year…. I had a choice. Roll over and die or stand up the best way I knew how and put one foot in front of another even though sometimes I couldn’t see where I was stepping and it literally was stepping forward in Faith. I could write so so so much more, but now I am over 3000 words and I hope you are still reading. I’ve been wanting to talk to you. I have been wanting to tell you all of this. It’s real. I am STILL going through it.. but EVERY DAY is getting better and better. Every single day I am bursting with JOY, AND LOVE, AND AMAZEMENT, at the medical miracle of my child.
Thank you for sticking with me through this long story. You can see my personal FB page to see current pictures and day to day Olivia progress. It really is amazing. Go ahead and request me. Be my “friend” 🙂
I will leave you with the biggest lesson my 12oz baby girl has taught me:
