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.

 

 

 

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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.