Eva is home! Then back to the hospital.

January 22, 2015 Eva was discharged from the NICU, but not without a fight.  I didn’t think I was ready to take care of her at that time considering everything that had happened back to back with her health.  I remembered watching her expressions as we left the only place she knew, the hospital, and it was incredible.  She was always a very observant baby there so as soon as we were outside her curiosity was set on super mode.  In the car she looked out the window as we drove and watched the trees and at every stop she would look at me as if I gave her comfort because I was a familiar face but soon after that comfort faded and I became a stranger.

The moment I had been waiting for was right there.  My babies were finally reunited 142 days after their birth and it was such a let down… they ignored each other despite all of our efforts.  Soon after getting her situated I started getting adjusted to the g-tube equipment, medications, preparing her milk for the next 24 hours (which was very complicated), still pumping and the biggest adjustment of all… meeting the needs of two babies at once.  Soon after starting her feeds through her g-tube her crying started.  She was inconsolable multiple times a day from then on.  Because she had been connected to machines in the hospital always, trying to walk around with her to try to calm her would result in fear because she wasn’t familiar with that feeling of being held and walking.  I was sad, overwhelmed and wanted to die.  I was not suicidal but at this point I was running on empty with little to no sleep.  I had to stop pumping soon after she got home but the every few hours of pumping were replaced with adding more milk to her g-tube bag every four hours.  She was being fed 22 hours a day at this point and still connected to a machine but at least it wasn’t 4.

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January 22, 2015, The moment they finally met again after being born.

Then, February 8, 2015, happened.  17 days after being home I had the fright of my life.   This night I got up 30 min before the next time I had to fill up her g-tube bag of milk and I was tempted to hit snooze but something told me to stay up and watch her, so I did.  Probably a minute away from thinking I was crazy I noticed milk started coming out of her mouth… then her nose and she was white and unresponsive.  I knew there was a problem.   I stopped her food and started suctioning her milk from her mouth and nose and had my husband call 911.  Ultimately she ended up aspirating and ended up in the PICU for a few days and she remained in the hospital right up until the night before her next heart surgery.  Unfortunately as soon as we go to the hospital she was herself again.  I hadn’t seen that happy girl ever since we got her home and I knew at this point she thought the hospital was home and I realized there would be a lot of work to do.

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Here’s Eva happy that she was back at the hospital.

Her 2nd heart surgery was on February 17, 2015.  This time they did an aortic coarctation repair with a patch aortoplasty.  She was in the PICU for another few days but she did really well overall.  Following this surgery her heart has been doing good as well, praise God.  She has been able to come off 1 of 2 of of her medications that she was originally discharged with and we now are able to see her cardiologist every 6 months instead  of every month.  They are still monitoring that area along with other valves that are smaller than normal.  We know as she gets older they will have to intervene with surgery again but until then we thank the Lord she was born at a time where medical knowledge is where it is.

October 16, 2015 was THE surgery we knew she would need inevitably from the time she was born.  It was to remove a large cystic hygroma located on the back of her neck.  This anomaly is sometimes part of turners syndrome but in this case it was larger than they had ever seen.  Ironically this was the one surgery I had the most anxiety about because I knew it was going to take the longest but it ended up being the best.  This is because she healed so nicely and her pain was very minimal.  Tylenol did the job when they usually had to use narcotics in all of her previous surgeries.  Since removing it you can tell her neck is very strong and she is fast, ninja fast.  She is a lot happier and we are so blessed.  After all of her obstacles she consistently proves doctors wrong and its such a beautiful feeling.  She now loves being home with her brother and I am now the person she goes to when she is hurt or sad.  In the beginning I questioned if we would ever have that bond because of our very rough start but we do.  Our bond is unbreakable.

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The back of Eva’s cystic hygroma.
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Eva after, cystic hygroma free.

 

 

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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.