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.

 

 

 

Introducing…Eidan Knight Devereux

So Eidan was in the NICU for over two weeks and when we originally were planning on taking him home, he had an apnea spell (he stopped breathing for a little while so they had to stimulate him to get him to breath again, which happens sometimes in preemies) so that held him back a few more days.  They reassured me that because it happened only one time, it shouldn’t happen again, but as traumatized as I was I insisted on taking him home on a home apnea monitor for a month.  When they released him to us, I was so scared that I am sure the nurse who discharged him was concerned.  Shit, I was concerned.  He was so tiny and I had no idea what I was doing.

I was scared to change his diaper, bathe him, change his clothes, hold him, and leave him alone in the room, so I never left the room while I was home.  The only time I would leave him was to go see Eva in the hospital and then dad would watch him.  There was a very, very short list of people that were allowed to watch him when dad and I had to go to the hospital together during Eva’s surgeries.  No one was allowed to come over to prevent any of us from getting sick.  I was absolutely terrified of everything at this point of my journey.

On December 22nd Eidan had to have his own surgery on a very large inguinal hernia.  This hernia was the largest hernia many doctors said they had seen, (you can imagine our horror when they told us).  The only good thing about that surgery was he was one floor away from Eva’s in the same hospital.  That was the closest they had been since they were born, so for 3 days dad and mom finally caught a break… we only had to hop onto an elevator to visit each of them instead of me having to leave Eidan at home with dad to see Eva in the hospital, and then leave Eva at the hospital to go back home to Eidan.

Not to mention, Eidan had also developed hemangiomas  a few weeks after he was born. During one of his his doctors appointments they were concerned that he has a total of 11 which any more than 4 is cause to be concern for possible issues on a number of organs. At that point they also heard a heart murmur but praise God after having an echocardiogram it turned out to be something called an innocent murmur and the hemangiomas have gone away completely.  Despite all of the health concerns we had for Eidan it was nothing compared to everything his twin sister, Eva had to go through.

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.

 

TWINS?

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This picture was taken a day before the pregnancy tests confirmed what I already knew.

When we got pregnant with the babies I knew the day after that I was pregnant.  I have not a clue how but I did, and I told my husband immediately.  Then when it was time for me to take the test we were snowed in.  So after two days of being stuck inside our house, and after the commissary was FINALLY opened, I scrapped the snow off of my car and rushed to buy the tests before I had to go to work.  When I got back I took a test and it was negative… I took the second test and it was negative and then I took a third test and it was POSITIVE!  I was excited/scared and in shock.  This was January of 2014 and the first pregnancy after my corrective surgery on my uterus.  I knew this could be the one… or  in this case the two.

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Because one is never enough.

After finding out about the pregnancy I ended up putting my two weeks at MAC on February 20.  I knew this pregnancy I had to take it easy this time.  Despite how much I tried to be relaxed I had some scares so I became that paranoid patient that called the doctor for every unusual thing.  And then March came along and we went for our ultrasound and as I looked at the monitor I saw two somethings, but I didn’t have the training to know exactly what I was looking at.  Then the doctor said it….. “Looks like were making up for lost time.”  I looked at my husband and his eyes looked full of fear and excitement.  The doctor confirmed, TWINS!  I gathered up my words and the only thing that could come out of my mouth was, a lot of eff words.  I mean a lot of EFF words.  I cried, I laughed so hard I sounded like a maniac.

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“Looks like were making up for lost time.”

The news came as a shock because neither one of us have twins in the family.  You can imagine as we called our family members to inform them of the unusual news, we had very interesting reactions.  We also celebrated with my first craving… Popeyes.  It took us a while to accept that we were pregnant with twins, I even found out that women over 30 and that are taller than average have higher chances of having twins.  Well in my case I fit that profile and God had big plans for us.  We even took advantage that on April 1st (April Fools Day) was our last day of our first trimester so we shared only the above picture on Facebook and the reactions were priceless.

 

Abortion, Miscarriages to Pro-life

ABORTION

I had an abortion.  That never gets easier to say and it never will.  I had an abortion long before finding out that I had a uterus that would not allow me to carry any child over the first trimester.  I found out this somber news in North Carolina after having a total of 3 miscarriages.  I made a choice to terminate a pregnancy that would have ultimately terminated itself.  That is a hard pill to swallow.

MISSCARRIAGES

Was God angry at me?  Was this punishment for my abortion?  Those were the thoughts I had after every miscarriage.  Every time we told people we were pregnant, we soon after had to tell them that we had a miscarriage.  Holy crap, the look of pity from the army wives that heard from the grapevine was just terrible.  It was almost embarrassing for me sometimes because I felt like I am a woman, I should be able to do this but I couldn’t do the one thing women are supposed to do.

I still don’t think I am completely over it.  The last miscarriage I had was right before Josh deployed and I suffered in silence.  I was so far away from my family and friends, but because of the distance I felt like they didn’t know me anymore, hell I didn’t know myself.  The one person I wanted or could talk to was on a dangerous deployment and I was so scared that I prepared myself (as much as I could) for him not coming home.  I was in a miserable place that a piece of me still lives in.

SURGERY

The surgery (uterine septum removal) that was September 2013 (one year exactly before the babies were born) allowed me to get pregnant after all of these heart breaking miscarriages. It basically removed a large septum in my uterus that did not allow the babies to grow and receive the nutrients they needed to survive.  The doctor mentioned that it was one of the largest he had ever seen (of course it was).  When I got out of anesthesia I told the doctor he was my best friend and when he told me my husband was there and that my husband was my best friend, I cried.  I also woke up in the middle of the procedure and told the nurse that I would do her makeup.  Anesthesia is such a strange medication.

PROLIFE

It is still very hard to accept that blood on my hands but it is there no matter how many times I wash it.  After having my babies I make it a point to inform women that it is a decision that will more than likely follow you for the rest of your life.  It is something that can’t be taken back and that child cannot be replaced.  I realized after having my babies that my babies were my babies from time of conception until the day I die.