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.

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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.

 

 

 

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.