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.

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Many firsts for our first year together.

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Bonding through biting.
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Bonding with kisses and playing.

 

 

 

 

 

 

 

 

I forgot to mention in my previous posts that everything we went through from July 2014 (two months before I gave birth) until May 2015 (when the twins were 8 months old) we lived at my husbands grandmothers home (his grandmother was awesome to us, she helped us out when we were at our lowest and we are truly indebted to her).  We lived in a small room where I did everything in, and I mean everything in there.  I made it my own home.  If I left the room, I literally ran to the kitchen when the twins were taking a nap.  The first time I actually decided to leave them for more than two minutes, I went for a walk  around the neighborhood while Josh watched them, and that is when Eva decided to do her first roll over.  I think at that moment I realized she was totally daddy’s girl, and still is.

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Our room/home/living room/bedrooms/dining room at grandma’s.
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In our own home… the living room.

 

 

 

 

 

 

 

 

 

By the time we left to our own home we were able to stretch our legs and Eidan finally got to perfect his crawling.  Eventually Eva figured it out too and this is when things began to get REAL!  They were tag teaming me every chance they had, and they still do.  After a few months of living in our own home Eva’s most amazing nurse moved away.  She was with us for a few months and I trusted her with all my heart.  We tried another nurse but it didn’t work out and something told me I could do it on my own and I have never looked back since.  I get to watch them grow before my very eyes and see them process and learn something new everyday.  Eva does however still have physical therapy and occupational therapy that comes twice a week, and thank God for their help.  I think the gap between Eidan and Eva’s physical achievements would be much bigger if we didn’t have therapists for her.  You need to know the edema she has on her feet is substantial and she’s figuring out how to walk on rounded, instead of flat feet.  It will get better as she grows but until then she has her own way and it is absolutely impressive to watch.  She is unbelievable.  Eidan also it truly something to watch as well.  His strength is remarkable, like a little ant. Im pretty sure by next year he will be able to lift me up with no problem at all.

 

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Eva learning how to crawl.     
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Eidan perfecting his crawl.

 

 

 

 

 

 

 

 

 

Honestly, I always worried about the babies loosing their twin bond because of how long they were separated but after Eva returning home after her second heart surgery, the look they gave each other eased my worries.  Since then their twin bond has grown exponentially.  For example they both move at the same time, multiple times throughout the night… and they sleep in separate rooms with their own sound machine.  They also have developed their own language that is still growing everyday, leaving me out of the loop.  I sometimes wonder if I had had them separately would they have been better off because I would have been able to give them more one on one attention.  After months of really reflecting on it, I know their bond is more important.  I think Eidan pushes Eva more than I ever could so I set time apart when one is asleep and the other is up to give them the special love and attention I think they need on an individual level.  Thank God for His wonderful plan and intricate tests for us all.  Not only am I thankful for our twins, I also know I could not have gone through this experience with my sanity intact with anyone other than my husband.

 

 

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Our first Christmas together.
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Our first Halloween together.