Can I have more hours in a day?

 

I wear many hats in this life, I always have.  I am a wife to an awesome man, a mother to two sassy twin toddlers, a cook, or shall a say a slow cooker specialist, a house cleaner (debatable), a student (right now I am on a break until next semester to continue my prerequisites so I can work towards my nursing degree), an actress to my children that sometimes need a bit of extra in their lives… and more. For some reason that just wasn’t enough so I most recently started a small business, so add business owner to that list.

I never understood how people at a young age know exactly what to study, what career to follow, or just know what their purpose in life is.  How is it possible that at 33 years old I just found it and how exactly am I going to juggle all of these roles at the same time, without loosing the importance of being a good wife and mother, getting good grades at school and creating a successful business?  Naturally when I sit down to think about it I get upset that I wasted so much time, but only one thing gives me peace, and that is knowing how could I have started all of this before when my purpose wasn’t revealed to me until after having my kids.

So why start a business?  I’ll tell you… After having the twins and with all of Eva’s medical issues, I realized that people were first intimidated by her, and it makes sense because so was I!  As she got older and around more people, I started to notice an unusual look people would give her and I didn’t understand.  But one day a very young girl, at a Barnes and Nobles came up to Eva and myself and asked, “whats wrong with her?”  That comment confirmed my suspicion that people see her differently.  ***Sidenote, to us she looks “normal” and beautiful obviously because she is our baby grrr.**  The only thing I could think of that may get peoples attention would be her webbed neck, which is part of her syndrome.  Well, I was so livid that the little girls mom said nothing so I went off to cry with her in my arms in between an empty rows of books.  I was sad and confused not understanding how a parent could not correct their child.  I now know that people don’t always know what to say, or do and I get it.  Especially because you will get different answers from many parents that have children with special needs, but if you ask me I would say, just ask in a polite manner because staring is not appropriate in any situation.  I must admit, I am now grateful to have that experience because I knew something had to change.  It made me realize that I  will not always be able to protect my daughter, but I can raise her to be a strong woman and help many people understand that everyone is different, some just don’t hide it and to me, that is enchanting.

My business, peculiarly perfect, is a clothing line with a purpose.  It was created to bridge the gap between children with special needs and curious minds.  I started with just two shirts, one for all kids and another is for kids that have a g-tube.  I have two more designs coming out next month and much more to follow.  I will have shirts for kids that have special needs with a clever design proclaiming their differences, instead of hiding what unique qualities they have.  There will also be shirts for all kids to show support.  More importantly I will be educating the public with a tab on my website called, spotlight child!  This is where there will be a child’s story featured quarterly, along with information  on their condition so kids and adults can become educated and eventually get more comfortable with people who are different than they are.



Will I be busier than before?  Yes.  Do I think its worth it?  ABSOLUTELY!  I thank God I have some direction….. if only there were 48 hr days, instead of 24.

 

Does it ever get easier?

As a mother with a child with special needs, I have to know now, does it ever get easier?  I can handle the medications, I can handle the therapies that come six times a week, I can handle the spoiled behavior that she learned being in the NICU for the first five months of her life, and the same spoiled behavior fifteen months after being discharged… shoot, I can handle both babies having a breakdown at the same time now.  The one thing that I can’t handle is the surgeries… I can’t handle the weeks prior, I can’t handle the week before, I can’t handle the day before, let alone the day of surgery.

I think I’m always fine but my anxiety manifests in ways my mind can’t control.  Physically the stress takes over my body.  All of a sudden theres something sitting on my chest, preventing me from taking a complete breath.  Just as abruptly my eyes fill with tears, I start making an ugly cry face and I can’t stop from sobbing, not to mention to hide that from the twins is a challenge, God forbid they see my ugly cry face.  Thats something you can’t forget.

I try to keep busy to prevent myself from imagining the “what ifs”.  Leaving me in a state of panic every time I think of it because every surgery comes with complications… of course it does, why wouldn’t it?  Your going under anesthesia, your getting cut open, in this case theres going to be a foreign object put inside, theres the hope that the surgery fixed the problem, theres the pain, and the recovery which is the hardest part.  Theres also the fact that all this stress is put on my 20 month old daughter.

Is she used to it by now?  This is her fifth surgery, her fifth in her 20 months here on earth.  Her two heart surgeries, the fundoplication/g-tube surgery, the surgery to remove her cystic hygroma and now the surgery to fix her fundoplication and repair her hiatal hernia.  Every one just as stressful as the last because her syndrome makes things a bit more complicated for the doctor.  Every one leaves me just as brokenhearted as the last because I can’t do anything to take her pain away.  Every single one leaving me more distressed than the last because as I get to know her better and as I watch her grow and learn and persevere despite the odds it gets harder to know life isn’t promised for anyone of us, including my children.

So should I be used to it now?  Could I ever get used to it?  Will we be able to go for longer than a year with out a surgery?  How about five years? ten? twenty?  Will she be able to live a “normal” life with out having another surgery right around the corner?  We won’t ever know ahead of time, but I can say it is an honor to be the mom of a very special set of twins.  I pray that they always strive to give glory to God and are able to see the positive of everything that happens in their lives, despite how difficult it may seem at the time.  I pray they always take care of one another and love each other unconditionally, and I hope with all my heart that they learn to show their affection more kindly.  For example, I hope Eidan learns to hug his sister more gently, instead of pinning her down on the ground and I hope Eva learns to use a softer hand and touch her brothers head, instead of hitting it with all she’s got.  Theres no doubt they are fighters, in every sense of the word.  Amen.

 

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My sweet Eva.

My sweet Eva.

I can’t promise that this surgery will be your last, as a matter of fact I know it won’t be.  You will need to have another one on your heart sometime when you are a young woman, that is if your heart doesn’t tell us that it needs to be intervened sooner.  Until then we will be focused on staying on top of every doctor/specialist appointments.  Yes my love, other girls that have turners syndrome have no signs or symptoms of it, but don’t forget that some girls won’t be able to take their first breath and you did, but it came with a price.  Some girls fight to have a better body, you fight to keep yours.  Some girls fight to not have their hearts broken, you fight to keep yours beating.  You have had to fight harder than most to live so don’t ever take that for granted.  After this surgery you will have another battle scar so wear it with pride because some girls care more about not having an imperfection but your “imperfections” perfect you.

Don’t loose that fire in your spirit that drives your mommy, daddy and brother crazy.  We know that same fire is the reason we have you today.  Don’t loose that funny laugh that forces you to tuck your chin in because we know you deserve to laugh after everything you have gone through.  Don’t loose that sweet smile because you light up our days knowing you are with us and you didn’t have to be.  God put us all together because He knew we needed each other, and we go through all these hardships because He knows we need Him, we always will.  You are never alone my love.

My sweet love, you were born with turners syndrome, but that is not who you are.  You are not a syndrome, you are not fragile, you are not a sad story.  What you are my sweet love, is a Devereux.  You are a warrior.  You are unbreakable.  You are solid and you are made with the unyielding love of our Father Lord Jesus.

Eva is home! Then back to the hospital.

January 22, 2015 Eva was discharged from the NICU, but not without a fight.  I didn’t think I was ready to take care of her at that time considering everything that had happened back to back with her health.  I remembered watching her expressions as we left the only place she knew, the hospital, and it was incredible.  She was always a very observant baby there so as soon as we were outside her curiosity was set on super mode.  In the car she looked out the window as we drove and watched the trees and at every stop she would look at me as if I gave her comfort because I was a familiar face but soon after that comfort faded and I became a stranger.

The moment I had been waiting for was right there.  My babies were finally reunited 142 days after their birth and it was such a let down… they ignored each other despite all of our efforts.  Soon after getting her situated I started getting adjusted to the g-tube equipment, medications, preparing her milk for the next 24 hours (which was very complicated), still pumping and the biggest adjustment of all… meeting the needs of two babies at once.  Soon after starting her feeds through her g-tube her crying started.  She was inconsolable multiple times a day from then on.  Because she had been connected to machines in the hospital always, trying to walk around with her to try to calm her would result in fear because she wasn’t familiar with that feeling of being held and walking.  I was sad, overwhelmed and wanted to die.  I was not suicidal but at this point I was running on empty with little to no sleep.  I had to stop pumping soon after she got home but the every few hours of pumping were replaced with adding more milk to her g-tube bag every four hours.  She was being fed 22 hours a day at this point and still connected to a machine but at least it wasn’t 4.

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January 22, 2015, The moment they finally met again after being born.

Then, February 8, 2015, happened.  17 days after being home I had the fright of my life.   This night I got up 30 min before the next time I had to fill up her g-tube bag of milk and I was tempted to hit snooze but something told me to stay up and watch her, so I did.  Probably a minute away from thinking I was crazy I noticed milk started coming out of her mouth… then her nose and she was white and unresponsive.  I knew there was a problem.   I stopped her food and started suctioning her milk from her mouth and nose and had my husband call 911.  Ultimately she ended up aspirating and ended up in the PICU for a few days and she remained in the hospital right up until the night before her next heart surgery.  Unfortunately as soon as we go to the hospital she was herself again.  I hadn’t seen that happy girl ever since we got her home and I knew at this point she thought the hospital was home and I realized there would be a lot of work to do.

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Here’s Eva happy that she was back at the hospital.

Her 2nd heart surgery was on February 17, 2015.  This time they did an aortic coarctation repair with a patch aortoplasty.  She was in the PICU for another few days but she did really well overall.  Following this surgery her heart has been doing good as well, praise God.  She has been able to come off 1 of 2 of of her medications that she was originally discharged with and we now are able to see her cardiologist every 6 months instead  of every month.  They are still monitoring that area along with other valves that are smaller than normal.  We know as she gets older they will have to intervene with surgery again but until then we thank the Lord she was born at a time where medical knowledge is where it is.

October 16, 2015 was THE surgery we knew she would need inevitably from the time she was born.  It was to remove a large cystic hygroma located on the back of her neck.  This anomaly is sometimes part of turners syndrome but in this case it was larger than they had ever seen.  Ironically this was the one surgery I had the most anxiety about because I knew it was going to take the longest but it ended up being the best.  This is because she healed so nicely and her pain was very minimal.  Tylenol did the job when they usually had to use narcotics in all of her previous surgeries.  Since removing it you can tell her neck is very strong and she is fast, ninja fast.  She is a lot happier and we are so blessed.  After all of her obstacles she consistently proves doctors wrong and its such a beautiful feeling.  She now loves being home with her brother and I am now the person she goes to when she is hurt or sad.  In the beginning I questioned if we would ever have that bond because of our very rough start but we do.  Our bond is unbreakable.

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The back of Eva’s cystic hygroma.
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Eva after, cystic hygroma free.

 

 

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

 

There’s Something Wrong.

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Eidan on top, Eva on the Bottom.

Between  April 1st, the time we posted on Facebook that we were expecting twins, and April 10th of 2014 when we were to go to New York to visit family,  we had another doctors appointment that changed our lives.  But this time it was the most devastating news any expecting parents could possibly hear, “there’s something wrong with one of them.”

As soon as we heard the news I cried.  I cried  harder than I ever cried before, I’m sure of it.  I was on a cloud with the last doctors visit, but this time I was at an all time low.  I was told that one child will not survive the pregnancy (this was the one and only time they mentioned abortion and I remember my husbands reaction to that was as if the doctor told him something offensive… It was never mentioned to us again).  Well, we got the same unfortunate news confirmed by another doctor as well as a specialist soon after.  In the ultrasound, it showed a very large cystic hygroma on the back of her neck, a cystic hygroma is basically a very large pocket of skin filled with cysts inside.  They also saw hydrops around her heart and her abdomen, which is an accumulation of fluid around these areas.  They mentioned that she probably had something called Turners Syndrome because of everything the ultrasound showed.  They also confirmed we were have a boy and a girl during this time.  On paper were blessed with a dream come true but in reality it seemed like we were in a nightmare.  Looking back I wish I would have had more faith in my daughter, my pregnancy and my Lord.

For the rest of the pregnancy in North Carolina I followed up closely with the specialist. Josh and I went to every doctors appointment expecting for them to tell us she passed away but that was so far from what actually happened.  In fact our last appoint in North Carolina, before I moved back to Houston, the specialist told us in a very surprised voice that our daughters hydrops looked better.  He mentioned that if in fact she did make it that she would be the second baby that he had ever seen survive after having such significant issues in utero.

I must mention that after the babies were born, the specialist called me himself to ask about her.  I proudly informed him that they were both doing well but it was going to be a long road for her.  At that point I had no idea how long and bumpy it was going to be but I am happy that I had such a wonderful team during our pregnancy in North Carolina.