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.

 

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Sometimes I just need to vent.

I can’t believe things are happening so fast with the babies!  Literally every day things are changing and it makes this job by far the best job I have had in my life.  And that actually means a lot because my work history varies from, working at an ice-cream company, to a go go dancer,  a legal assistant to a makeup artist, and this is just to mention a few.  Originally, these kids were the reason for my premature grey hair they are now the reason for my daily smiles and laughs that I have all day

Eidan is such a big boy!  He is repeating words on a regular basis.  His favorite words as of today are, circle, sit down, sissy, daddy, mama, and Shana.  His communication is incredible and his tantrums can be either prevented altogether or resolved with a reach out for him to hug me, I console him and I say, “all done?” and he then repeats, “all done” and walks off.  He really loves his sissy and that makes me the happiest mom in the world.  I especially appreciate that when Eva comes and destroys anything Eidan makes, he just continues on without a hesitation. Oh my heart!

Now Eva has truly come a long way.  I have started experimenting for a few days now, gravity feeding her instead of using the pump and I am amazed.  She is now being fed for only 20 minutes instead of a miserable hour and a half, not to mention having to vent her is little to none now.  I ACTUALLY PUT HER TO BED WITHOUT HAVING TO VENT HER TONIGHT FOR THE FIRST TIME IN EVA HISTORY!!!!!  I truly could not see our lives without having to vent her until she was completely off of the tube but I now feel the day is just a few away.  This is kind of a big deal, simply because we have avoided taking the babies many places because it is very difficult taking everything, and having to prepare for venting her in public (which is alot harder than anyone can imagine).  When we did take them out we had an hour of a window to do something with them then we had to bring them home ASAP to keep them on their feeding schedule.  Now we can actually go out and let them enjoy this beautiful world!  Oh my, the possibilities!   For anyone who doesn’t know what venting is, it is when you have to lay the child on the floor and open(release) the gtube extension into a tube to release any built up air in the belly because she is unable to burp by mouth, so essentially it is like burping her just through her g-tube.  It needs to be done because the air will build up and cause her to wretch, which is uncomfortable for anyone, especially a baby.  

Tomorrow Eva and I will be having a girls night… just kidding, she has a sleep study at the hospital from 7pm until 7am.  The study will determine if she has sleep apnea. If she does, the study will determine how bad it is, and the ENT will either suggest surgery now, later or never.  I am hoping we will be able to sleep with no problem and we will be home in time for breakfast.  Daddy will be having a boys night and party all night! JK, until 7:30 then lights out.

I am so proud of our little family.  Especially my husband.  He has been working really hard for us.  He has been working extra jobs galore and I rarely see him throughout the week.  I always knew how blessed I was to have him but the fact that he picked me has always made me question his sanity.  He’s such a badass, even though he gets on my nerves and vice versa.  I must have done something really awesome to have ended up with him.  Thank you Lord!

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I feel like I have already made so many mistakes.

The babies are 18 months old and I can’t help to feel like I have already let them down, despite my effort to never do so.  This week Eva had to go by ambulance to the ER because of a high fever and because she was so inconsolable her lips were turning blue.  While we were waiting for the ambulance I had both babies in my arms and I started to cry exactly like them.  Eva was in pain, Eidan was scared and I am their mom and it is my job to help them and I couldn’t.

Through an X-ray a hiatal hernia was officially confirmed and now she needs another surgery to correct that as well as to fix the fundoplication that she already has.  The same fundoplication that and has given us problems since day one.  Even though its been rough we have finally found a system that works for us and were going to back to square one right after this next surgery.  We don’t know if this time things will be better, or worse.  I can’t help but feel right back in that dark room I was in months following the birth of the babies.

I am tired of seeing her through pain, I am tired of being away from my son, and I am tired of only seeing my husband when we switch out from the hospital.  I don’t want my daughter to have yet another battle scar, I don’t want to miss out on my nightly rituals with my son, I don’t want to have to update my husband or get updates of our daughter, depending on who’s with her that day/night at the hospital when she has to go in again.

I don’t know how I am going to tell her how incredibly strong and how fucking unbelievable she is despite every one of her imperfections when she becomes a teenager and she starts to notice.  I don’t know how I will tell her that God made her heart the way he made it in perfect timing and for perfect reasons.  That she was born at a time that it could be repaired because he knew the love in her heart was too much a regular heart could handle.  I will tell her that scar on her side from that procedure is beautiful.  The g-tube and fundoplication scar was put there because she had to learn to eat by mouth later in life, because during the crucial period that babies learn to drink out of the bottle, she was too weak and needed to focus on healing and growing to get out of the hospital to be back with her brother.   I will tell her as soon as the g-tube is taken out and after a scar forms that it is beautiful and I couldn’t wait until I saw that one created.  The cystic hygroma was the first thing the doctors saw when they realized there was an issue when she was still in my belly, and it was a reminder of the long hard road for all of us.  When it was removed that reminder that every doctor said she was not going to survive was gone with it.  That scar is my favorite and I will tell her its beautiful.

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I will always tell my son that he is just as special as his sister.  I will tell him she is no more important than him because I know he will feel like that.  I will tell him I recognized at a very early age that he is very perceptive and extraordinary.  I will let him know I tried very hard to give him extra time after Eva goes to bed so he knows he’s important too.  I know he will feel like she gets more attention sometimes because of her health but I will remind him that she is alive because of him and he is alive because of her and that is a bond that is more precious than any person can describe.  I will remind him that he is always her protector and God planned this perfectly for His purpose.  I will forever thank him for his patience, love and sensitivity that reminds me so much of his father, and is reason why I fell in love with his father in the first place.

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Thank you God for every day and every battle.  Don’t let me forget any of it.

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.