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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Custom made hearts are more common than you think.

img_2883When I explain to anyone Eva’s medical issues, as soon as I mention heart surgery, the expression on their face seems to get more despondent .  There is so much of  a respect and fear for the heart that people tend to understand immediately how serious your child’s condition is if you mention they have a heart issue.  With that being said, I don’t think people know how common it is for children to be diagnosed with a heart condition.  For example I have 2 childhood friends that both have children who also had complicated heart surgeries (one just a few days ago) at a young age. Because of the complex properties of the heart, all three of our children have had different interventions and thank God all three of them are doing well.

As I was driving today to visit one of those friends (mentioned previously) at the hospital so I could finally meet their little one after he just had open heart surgery, I almost turned around a few times because my anxiety of it all almost took control of me.  The emotions I felt were taking me back to when Eva was having heart surgery herself and my sadness overcame me.  It was overwhelming, but I followed through and I am so glad I did.  It was nice to see how incredible her son was doing and to put a face with the many, many, many prayers I sent up for him.  I was also reminded how much I want to go to nursing school.  I don’t think I ever felt so passionately about a career choice than this.

Watching my friend, a new mom, experience something that most parents will never have to deal with, (i.e. the extended hospital stay, cords tangling, monitors beeping, Doctors and nurses being obnoxiously loud in the room where your baby is trying to nap through the pain, X-rays, echos, sutures from a fresh open wound) makes me realize how truly hand picked we are for these very difficult times.  We have to hand over our child to a surgeon to cut them open and repair a heart you grew yourself, you have to let nurses watch over your child and hope they don’t miss any red flags and we have to trust God that his plan is one that shows mercy to your child.  After an experience like that you learn to appreciate your boring, repetitive life at home, as ridiculous as it sounds.

As I left the hospital I went into an elevator with a kid (maybe in his 20’s) that had a artificial heart in a backpack.  Want to talk about putting things into perspective.  I wanted so badly to talk to him because I am 100% sure most people are intimidated by his situation but all I got out of my mouth was, “have a good day”.  I was so disappointed in myself because I wanted to tell him how amazing and special he is because he lives in an time where his unusual circumstances allows him to walk, talk and live!  All I can think is God has such a purpose for him and all of our children.  Especially our children that require medical attention who also live in a time where these medical advances have allowed them to live a longer life, and they wouldn’t necessarily have had that option, just 50 years ago.

I am so grateful for Eva and her experiences, because while she went through them physically, I went through the same experiences but on an emotional level and I wouldn’t trade that for the world.  I have become stronger, more aggressive (especially in situations where I need to be for my children) and at the same time softer.  I have adapted to situations where some people think is impossible to overcome.  You never know what you can survive from until after the dust settles.

The first 24 hours of being 2×2

Do two year olds know when they turned two and do they know that they are supposed to act entirely different as soon as their birthday hits?  Eidan and Eva apparently got that memo and they are tracking.  Here are the babies newest shenanigans…

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Eva is now more persistent than ever!  The word, “No” is just a sound that comes out of moms mouth but means absolutely nothing.  However, lets brush your teeth sends her running and screaming like a hyena.  Climbing new toys is her new thing, along with falling.  Her favorite thing to do is taking a toy that Eidan is playing with and getting upset when he takes it back from her while I sit on the side lines to see if I need to intercede.  So much fun.

Eidan is talking up a storm.  His favorite word is circles and cake.  Cake is his favorite food and has learned that when you sing them happy birthday, cake follows.  He loves to close the door on you as soon as you walk off for even a second, when you open the door he is standing there just waiting for you with the sneakiest face.  He loves screaming like a pterodactyl if anyone is too close to his toys, especially his sister.  So I hear that dinosaur scream all the time.

Update: Evas ear, nose and throat dr has confirmed she has severe apnea.  We will be seeing her dr. next month to know what his plans are for her.  I will admit, I knew she had it but I did not know how bad.  The news came as a huge surprise and it got me down because it means that inevitably she will be needing another surgery and it breaks my heart.  For the first time I will not obsess about the outcome.  I will simply take it as it comes and pray about it often.  I tend to worry about worst case scenarios and have anxiety every night but I will make a constant effort to give it to God.  This may be the hardest task for me since my imagination is absolutely on another level.

and new news……..*insert drum noises* and we have a new (possibly temporary) family member………… it’s really up to him…

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Lilo

Josh found him injured on the floor during a night run.  I called the wildlife phone number and they said they would just put him down.  I have decided to take care of him until he gets better (God willing).  He seems to be flourishing… probably because he is getting fed around the clock during the day…. literally every 15-30 min in the day.  I am glad Josh found him because having Lilo has made me realize if I have time to feed the bird I DEFINITELY have time to consistently work on feeding Eva by mouth EVERY meal. Whether she takes it or not is up to her but I have faith that she will start taking food by mouth before she is three.  If you are reading this please keep that in your prayers too.  This may be her toughest hurdle yet but I know she can do it!

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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My “summer”.

My 5 week math class finished yesterday and I am proud to say I got an A.  I was sure that I would end up with a B, but apparently I got a 100 on my final, so that bumped my grade up tremendously.  I had a love hate relationship with with that class.  I met some really great people who all thought I was in my mid 20’s which was awesome, and my teacher was amazing, but my nights and “down time” was filled with non stop homework and studying.  I didn’t just want to pass, I needed to pass with an A and more importantly I desperately wanted to understand it.  For the most part I feel like I learned a ton, but the best lesson learned is to NEVER take another math class in the summer.

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Me and my new “bestie” Jaret.  We were basically the original cool kids before we allowed a few more in our club.

I’ve started celebrating my “summer” with a doctors appointment for Eva at the turners syndrome clinic.  She won’t be needing growth hormones yet because she is growing well so thats amazing news!  Next week will be my only week of summer, before my philosophy class starts.   Bet your behind that my week is already booked with doctors appointments and a sleep study for Eva to determine whether or not she has sleep apnea.

On a lighter note, it is absolutely an honor to watch my little ones grow and show me something new that the’ve learned everyday.  Both Eidan and Eva are starting to go pee pee in their potty regularly now, and Eva has taken it a step further going poo poos in the potty twice already!  Eidan is taking up a storm and Eva is not needing to be vented nearly as often as before.  More importantly they are playing with each other more and more everyday,  and they also sneak hand holding once in a while.  They make each other laugh just by a look and they chase each other almost non stop.

The fact that Eidan and Eva have each other is probably the biggest blessing they each have.  To be honest in the beginning I selfishly though to myself how I wish I had them separately so I could give each of them more attention but I can’t help but realize now that what they have is much more than what I could have given to them.  Its times like this when I see how perfect Gods plan is ALL THE TIME.  Its funny how we see things in perspective after the fact, yet when times get tough again (because they always do) we will once again forget that God has everything set up perfectly (just like before).

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Hello blissful, naive me… from only a day ago.

Oh boy… After enrolling in a 5 week math class I couldn’t help but realize that I bit off more than I could chew.  I thought that since I was smart and charming I would be able to make it through with an easy A, but I was wrong… way wrong… too wrong.  I am not sure why I didn’t think back to my past and remember that I didn’t make it past 10th grade…. so past that grade level, I never learned.

So here into my 3rd week of class I am struggling and using every moment of down time, i.e. when the babies sit down to eat, “nap” and sleep at night, to study and do my homework that consists of about 2500 questions, roughly.  Yes, you read that right… 2500 math problems that are due on the last day of class, along with the extra credits, which of course I am doing. So I’ve been forced to say goodbye to my non existent social life… my social media social life of stalking cute babies and watching the world fall apart.

Oh no… it gets better, to make matters worse…. the babies are officially in their terrible twos.  I thought, up until yesterday, that babies were already there but oh no….  Today Eva learned how to take off her diaper and Eidan has figured out how to get out of his crib.  They both have increased tantrums from a few a day to a billion a day, the works, the screaming, kicking, and crying… on command.  The experimenting phase has also begun… Eva with the, I can get on the couch without your help but I refuse to learn to get down and hope mom can get to me before I get down head first… and Eidan with the I am going to get on the slide however I want and let me jump off from every part, because I want to… and I am going to look at you and laugh at your fear face mom.

Oh a happier note, they are communicating more and they both know every letter of the alphabet.  We are now leaning numbers and colors.  I am extremely proud of them because I’ve read that kids don’t learn the alphabet until 3-4, and they are a month shy of 2.  I am working with Eva again on her eating, and Eidan is getting really good at the potty thing.  Man, they are amazing and I wouldn’t change my life for all of the money in the world.  THANK YOU GOD!

Many firsts for our first year together.

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Bonding through biting.
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Bonding with kisses and playing.

 

 

 

 

 

 

 

 

I forgot to mention in my previous posts that everything we went through from July 2014 (two months before I gave birth) until May 2015 (when the twins were 8 months old) we lived at my husbands grandmothers home (his grandmother was awesome to us, she helped us out when we were at our lowest and we are truly indebted to her).  We lived in a small room where I did everything in, and I mean everything in there.  I made it my own home.  If I left the room, I literally ran to the kitchen when the twins were taking a nap.  The first time I actually decided to leave them for more than two minutes, I went for a walk  around the neighborhood while Josh watched them, and that is when Eva decided to do her first roll over.  I think at that moment I realized she was totally daddy’s girl, and still is.

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Our room/home/living room/bedrooms/dining room at grandma’s.
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In our own home… the living room.

 

 

 

 

 

 

 

 

 

By the time we left to our own home we were able to stretch our legs and Eidan finally got to perfect his crawling.  Eventually Eva figured it out too and this is when things began to get REAL!  They were tag teaming me every chance they had, and they still do.  After a few months of living in our own home Eva’s most amazing nurse moved away.  She was with us for a few months and I trusted her with all my heart.  We tried another nurse but it didn’t work out and something told me I could do it on my own and I have never looked back since.  I get to watch them grow before my very eyes and see them process and learn something new everyday.  Eva does however still have physical therapy and occupational therapy that comes twice a week, and thank God for their help.  I think the gap between Eidan and Eva’s physical achievements would be much bigger if we didn’t have therapists for her.  You need to know the edema she has on her feet is substantial and she’s figuring out how to walk on rounded, instead of flat feet.  It will get better as she grows but until then she has her own way and it is absolutely impressive to watch.  She is unbelievable.  Eidan also it truly something to watch as well.  His strength is remarkable, like a little ant. Im pretty sure by next year he will be able to lift me up with no problem at all.

 

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Eva learning how to crawl.     
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Eidan perfecting his crawl.

 

 

 

 

 

 

 

 

 

Honestly, I always worried about the babies loosing their twin bond because of how long they were separated but after Eva returning home after her second heart surgery, the look they gave each other eased my worries.  Since then their twin bond has grown exponentially.  For example they both move at the same time, multiple times throughout the night… and they sleep in separate rooms with their own sound machine.  They also have developed their own language that is still growing everyday, leaving me out of the loop.  I sometimes wonder if I had had them separately would they have been better off because I would have been able to give them more one on one attention.  After months of really reflecting on it, I know their bond is more important.  I think Eidan pushes Eva more than I ever could so I set time apart when one is asleep and the other is up to give them the special love and attention I think they need on an individual level.  Thank God for His wonderful plan and intricate tests for us all.  Not only am I thankful for our twins, I also know I could not have gone through this experience with my sanity intact with anyone other than my husband.

 

 

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Our first Christmas together.
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Our first Halloween together.

 

 

 

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.

 

 

 

I was finally discharged… empty handed.

When Eidan and Eva were born I can honestly say that I had no idea how to feel.  I left the hospital 3 days after having them, empty handed.  Eidan was still at The Woman’s Hospital of Texas, where they were both born and Eva was sent to Memorial Hermann Hospital where they were better prepared for her medical needs.  I had to leave my babies in the hands of people I never met before.  Some nurses I still keep in touch with, and some I met only one time in my life… one day/night where they took care of my new little treasures.

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My swollen ankles/feet because of preeclampsia… No, I hadn’t shaved for a long while….. still haven’t.

I was going every day to both hospitals to check on them.  I still had preeclampsia (it lasted for a few months after having them)  so my feet and ankles were constantly swollen, and I was recovering from the c-section.  So I would be wheeled through both hospitals, assuming we could find a wheelchair that day and if we couldn’t I would walk like a decrepit old lady taking baby steps, leaning all of my body weight on my husband through both hospitals.  It was rough as hell.

I was too busy pumping every 3 hours (night and day), and running from hospital to hospital to do anything else, to notice anything else.  Showering, eating and sleeping were not in my agenda for a few months.  I was a zombie, like the walking dead zombie, but not really because at least they ate.  Sometimes I didn’t remember the drive home from the hospital which looking back concerns me.  If anyone would have told me to slow down its not like I would have listened anyway.  I had to see them everyday because they were my children and they were my responsibility.  It was my duty as a mother.  I was a mother now.  I am a mom.  I have twins.  Almost a year and a half its still so strange to me.

 

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My entourage.

 

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