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.