While y’all were getting ready for the Super Bowl LI, I was collecting samples of my daughters stool.

It all started Wednesday, when my daughter had a slight fever and because of her past medical issues I was already on alert.  Friday her stools looked a bit different, kind of a maroon color and since I am in control with what she eats through her g-tube and there would be no reason for it to be that color, I called the Dr.  We were able to get her in that same day and the doctor confirmed that there was in fact blood in her stool.  Eva had to get her blood taken, and the doctor requested that I bring in a fresh sample of her stool for testing, so that is what I did this Saturday morning.

Per usual Eidan and I got up first, I made breakfast, Eva woke up, I fed her while Eidan ate, and as soon as I get to take a bite of my food Eva poops!!! I was on it… I changed her diaper, took the 7 bottles that was given to me to scoop poop into (and did that task like a pro).  Put socks and shoes on the kids and didn’t even bother changing their clothes, I just put a robe on them and ran out the door and drop off the samples.  From the time that Eva did her business, I got the sample to the lap within 30 minutes!

Now you may think, “what’s the big deal?” Let me just inform you that I just started taking the kids out alone two weeks ago.  We’ve been to my moms twice and today for the first time the kids went to my sisters.  Every time I get them dressed, down the stairs, into the car, to our destination and back, it is a victory!  This year I promised myself that I would get them out more and because dad works a lot, I had to figure this out on my own.

As I was driving back home from my sisters, I realized that I am so glad I got all of my partying days out of my system at a young age.  The fact that the Super Bowl is here in Houston this year you can’t help but think of the famous people in town and the crazy people running around the city trying to stalk them.  Not me… I enjoy being at home with my babes and going to bed at a reasonable hour.  I am more interested in staying on top of my daughters health, than the makeup trends I used to care about.  I am more excited watching my son sing songs that he memorizes, than being distracted with things that really don’t matter in life.  If you are about that life, you go girl (or guy)!  I have been there, done that and did it again.  I just never though I would ever get to a place where I don’t even have an itch to go out at all.  I enjoy a simple life and if I could do it all over again, I would… I totally would if it got me to exact place where I am at today.

So while we won’t know more until next week, I can only pray that it isn’t a big issue and won’t require surgery.  Since she is still retching more than 2 years after her fundoplication and almost 1 year after her hernia repair (probably caused from the retching) and fundo redo, I can only hope this current issue helps us also find a way to correct this issue.  I will leave one hint of advice to any parent…  if something doesn’t feel right about your child go with your instinct.  The fundoplication is the one surgery my husband and I did not feel right about and ultimately it had become our worst nightmare for our daughter.  It is always better to be safe than sorry, especially for our children.

 

 

 

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Eva Kirley Devereux

Eva has had an extremely challenging Journey already in her now, 18 months of living here on this earth.  To best sum up her past and current health issues I will simply type out the list of her most recent clinical summary along with links to help explain what each are… Turners Syndrome,SVT (supraventricular tachycardia), Nissen fundoplication (with gastrostomy tube placement/g-tube), premature infant, PFO (patent foramen ovale), pericardial effusion, mitral valve stenosis, milk protein intolerance, lymphedema, lymphatic malformation (cystic hygroma), IUGR (intrauterine growth restriction), hydronephrosis, esophageal reflux, dysphagia, cystic renal dysplasia, congenital stenosis of aortic valve, coarctation of aorta, bicuspid aortic valve.

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Baby Eva.

Little Eva was in the NICU from the day she was born, September 2, 2014 until January 21, 2015.  Before she left she hospital she had her first heart surgery at 8 days old, she had a fundoplication/g-tube surgery at 4 months old and countless X-rays, scans, IV’s and needles.  Before she left the hospital I am pretty sure she thought many of her nurses were her mom instead of me.  Yes, I went every day (not including the week I was sick and unable to see her) but what I failed to mention was I that I was only able to stay a few hours each day (unless she was having surgery where I never left her side), but my time with her in the hospital was not enough.

Her first Heart Surgery was on September 10, 2014 and it was to repair her aortic coarctation with a subclavian flap.  Her h/r Her surgeon took 8 minutes to do the repair, boy was he fantastic… and a bit strange.  As soon as they put her in a PICU room so she could be monitored closely, her nurse gave me a bumblebee pendant with a poem on it.  That was the first time I allowed myself to cry since the babies were born.  I cried for so long when I was left alone in the room with her as she was fighting so hard.  My emotions were held in for so long I could have cried for a for days, or even years.

Her balloon angioplasty in her heart (because of a recoarctation) was November 18th, 2014. This procedure was not supposed to be a stressful procedure but we are a family that doesn’t play by the rules.  She developed a pseudo aneurism and she needed to be monitored in the PICU for a few days.  Because of her syndrome, it effects her tissue and makes her very unpredictable during certain procedures.  She healed nicely but it was mentioned that this was the first time her doctor had seen an aorta need to be intervened so soon after a surgery.  I believe it was at this point that I realized that when any doctor told me not to worry, maybe I should.

The fundoplication/g-tube surgery was mid December, 2014, and it was the one surgery we hesitated on doing.  Nothing about it felt right and looking back we wished we would have looked at other options.  Her healing for this surgery was a nightmare.  She was in pain much longer than they expected and the primary concern for her having this surgery, was her “reflux”, which was still there even after the surgery.  You can imagine our anger and guilt that followed and we still carry with us after this disaster.  There is a small percentage of people that have had a fundoplication, develop a complication called gas bloat syndrome, that prevents them from burping on their own…. well yes, that also happened.  She still struggles with this currently and we have to vent her g-tube often.   That means we have to allow the gas from her stomach escape so she doesn’t feel uncomfortable and start gagging.

Ironically just like her brother, a few days before she was to go home she apparently stopped breathing.  This traumatizing day was December 23, 2014, two days before Christmas.  Nobody was able to tell us exactly what happened, all we know is her nurse was holding her, she started crying and turned blue.  They had to give her air and she started taking breaths again.  After this ordeal I was in absolutely no rush to get her home, but little did I know almost a month later, she would be home with us trying to adapt to a life outside the hospital.

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Eva leaving the hospital, January 21, 2014.

 

 

 

September 2, 2014

On September 2, 2014, I was 34 weeks and 5 days pregnant, going in for my weekly doctors appointment when she told me that not only is baby girl still not growing and having unusual heart issues but baby boys heart is doing something unusual so today is the day were taking them out.  The only thing going through my mind at that point was after today I will officially be a mother.  A mother to possible twins, assuming baby girl does well and at this point also baby boy.

After a few hours of being monitored it was time for the whole sha-bang.  They took me into the white room, where I got my epidural and soon after where there was a white sheet covering my belly and below.  As soon as the doctor came in, I knew it was time.  Dad was able to come in and there they go cutting away.  I remember I was freezing to the point that it distracted my mind from everything that was going on and thats probably a great thing.

They were born 10:23 pm and 10:24 pm.  Our son Eidan came out first weighing 4.5 lbs and oh my goodness he was a dream come true.  He was having heart issues because he was wrapped around his umbilical cord four times.  Thank God the doctor took him out that day.  Our daughter, Eva weighed 3.5 lbs and was hauled away and I didn’t get to see her until I was in recovery where they brought her to me and informed me they would be sending her to another hospital the same night.  Comes to find out on the Apgar score she rated between a 2-3.  She wasn’t doing the best but she was alive and she literally came out fighting like a champ.

When I first saw Eva, she was in a incubator and it was very difficult to see her without wondering what her future was going to look like.  She was very puffy all over with severed edema  on her hands and feet.  Under her head there was a pillow of skin (called a cystic hygroma) that sat under her head.  We knew these things were there because it is part of turners syndrome and thanks to the ultrasounds it gave us an idea of how large it these things were, but nothing could prepare us for how it looked like in person.

When I went into my room after recovery I was left exhausted, physically, mentally and emotionally.  As I look back I realized something special…  I feel like if Eva wouldn’t have survived the pregnancy Eidan would have either, and, if Eidan wasn’t having trouble with his umbilical cord and forced us to have the c-section that day, then I believe Eva wouldn’t have been able to survive much longer.  So in a way they both saved each other.

 

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Eidan Knight Devereux
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Eva Kirley Devereux

 

In The Beginning…

 

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We were two peas in a pod, before we had two peas in a pod.

I met my husband October of 2007 at a bar, at the time it was called 1415 and the name has changed since. My way of flirting when we first met is my husbands favorite story to tell. In a nut shell I am aggressive…. thats just who I am…. I told him to get in my car and I would take him to the next bar that everyone was going to. He declined, we met up at the other bar and his was of flirting was sitting on my lap. I like to think we are even.

Fast forward to our first date… at a Vietnamese restaurant that has since burned down, was at the middle of the night, where we got to know each other better. At first he seemed way to immature for me but soon after I KNEW he was the one. He is the best man I have ever met in my life. Patient, honest (sometimes way too much), tough as heck, gentle as a dove. I don’t mean to be mushy but I am truly undeserving of him. Anyone that knows me will tell you I am impatient, annoying, pushy and even more honest than him, but these are all things I’m working on.

So he joined the army 2010, we got married that December and moved to Fort Bragg soon after (I will get in depth of that part of my life at another time so stay focused). We suffered two miscarriages, a deployment, a surgery to correct my uterus, found out we were expecting soon after, then found out we were expecting twins, and yet again, soon after that found out that there was a problem with one of the babies. I refused to give birth in North Carolina so we moved back to our home town, to the great land of Houston, Texas July 2014. Through it all I feel our lives were not complete until the babies were born. Then I finally found the purpose of my life and thank God I did.