Does it ever get easier?

As a mother with a child with special needs, I have to know now, does it ever get easier?  I can handle the medications, I can handle the therapies that come six times a week, I can handle the spoiled behavior that she learned being in the NICU for the first five months of her life, and the same spoiled behavior fifteen months after being discharged… shoot, I can handle both babies having a breakdown at the same time now.  The one thing that I can’t handle is the surgeries… I can’t handle the weeks prior, I can’t handle the week before, I can’t handle the day before, let alone the day of surgery.

I think I’m always fine but my anxiety manifests in ways my mind can’t control.  Physically the stress takes over my body.  All of a sudden theres something sitting on my chest, preventing me from taking a complete breath.  Just as abruptly my eyes fill with tears, I start making an ugly cry face and I can’t stop from sobbing, not to mention to hide that from the twins is a challenge, God forbid they see my ugly cry face.  Thats something you can’t forget.

I try to keep busy to prevent myself from imagining the “what ifs”.  Leaving me in a state of panic every time I think of it because every surgery comes with complications… of course it does, why wouldn’t it?  Your going under anesthesia, your getting cut open, in this case theres going to be a foreign object put inside, theres the hope that the surgery fixed the problem, theres the pain, and the recovery which is the hardest part.  Theres also the fact that all this stress is put on my 20 month old daughter.

Is she used to it by now?  This is her fifth surgery, her fifth in her 20 months here on earth.  Her two heart surgeries, the fundoplication/g-tube surgery, the surgery to remove her cystic hygroma and now the surgery to fix her fundoplication and repair her hiatal hernia.  Every one just as stressful as the last because her syndrome makes things a bit more complicated for the doctor.  Every one leaves me just as brokenhearted as the last because I can’t do anything to take her pain away.  Every single one leaving me more distressed than the last because as I get to know her better and as I watch her grow and learn and persevere despite the odds it gets harder to know life isn’t promised for anyone of us, including my children.

So should I be used to it now?  Could I ever get used to it?  Will we be able to go for longer than a year with out a surgery?  How about five years? ten? twenty?  Will she be able to live a “normal” life with out having another surgery right around the corner?  We won’t ever know ahead of time, but I can say it is an honor to be the mom of a very special set of twins.  I pray that they always strive to give glory to God and are able to see the positive of everything that happens in their lives, despite how difficult it may seem at the time.  I pray they always take care of one another and love each other unconditionally, and I hope with all my heart that they learn to show their affection more kindly.  For example, I hope Eidan learns to hug his sister more gently, instead of pinning her down on the ground and I hope Eva learns to use a softer hand and touch her brothers head, instead of hitting it with all she’s got.  Theres no doubt they are fighters, in every sense of the word.  Amen.

 

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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.

 

 

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.

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.