January 29, 2015

And then one twin had surgery...

Ugh. That's all I really want to say right now when I think about writing about Juliette's last 3 days. I want to write so badly about it and for so many reasons.  But it's really hard to do. I can already barely remember bits of the days and I want to document them. But as much as I really hate the idea of forgetting the little things I'm struggling with the experience as a whole and kind of want to forget it. Except for some things...

I don't ever want to forget how I cried when I realized this was the first time in her life she had been held for hours and was the true center of our attention and how she was about to be cut open. It made me cherish those last few minutes with her so much more. I didn't let what was about to happen stop me from playing with her and loving her and smiling at her. Afterwards we nursed as often as she could, she was very tired but we fell asleep snuggling in my bed at 3am. We haven't done kangaroo care like that in a while since they're so big now and they don't both fit. I hate to say it, but it was so nice not to have to worry about feeling bad for Vivienne. It was amazing.

It will always break my heart how happy she looked when we passed her off to the sweet anasthesiologist and how she smiled at me as they walked down the hall, in her cute little yellow gown and brand new way-too-big orange socks. She had not a care in the world while Daddy and I cried. Then, hearing her cries when we walked in to recovery and not wanting to believe that could be my baby; it sounded so pained and sad. She also looked so puffy and bigger than herself, I had to do a double take. But I am so glad she had a sweet nurse holding her who gave her right to me and encouraged me to feed her a few minutes later. That was the brightest and darkest time of this whole ordeal - getting to finally see my baby girl even though it broke my heart all over again. But then there was her first smile and laugh after she came down out of the fog and it was so amazing to see. I hope I remember that part.

I don't want to forget when the anesthesia started to wear off and the real pain started she immediately took comfort in my arms and nursed, even if just for a few minutes before she spit it up and needed to try some sugar water for hydration.  I'll also never forget the sounds of the other children in the PACU. Their cries before their mothers were there, coming out of anasthesia and being in pain or confused. Babies crying for their mommas and my heart was breaking while my baby slept in my arms.

I am really trying hard to move past them putting us in the only room that had a monitor despite her not being hooked up to it (and there being other rooms available) only to then have us move out at 130am when another child needed that room. They also came back at 430am and took my husband's bed that had been fine in our original room but against the rules in our new single room (I understand it's for safety reasons but come on, one more hour wouldn't have killed us). It was all just a perfect illustration of the condition of the hospital and the people who work there, especially in comparison to where they were born, St. Peter's. This place was a true representation of everything that is wrong with modern medicine and why I chose a home birth initially before we knew they were twins. It's all about money and disease rather than patient care and wellness. The hallways are beautiful with lots of cushy chairs and coffee shops but the rooms are old and dingy, the staff is overworked, underpaid and a lot of the times rude. I love our surgeon (for now) and we had three nice nurses but everyone else was miserable or just did not care. Rather than putting the millions of dollars they have had donated into actual quality of care by renovating rooms or helping the exhausted faculty and staff they build reflection gardens and add more buildings for more patients. It was exactly what I hate about hospitals - we were just a number from the second we got there. Actually, we were BeJu0730. Funny, bijoux means jewel in french. Get it?

I need to forget the fact that my six month old had over 10 IV pokes in her, two of which were in her head. I need to block out the image of her veins blowing and blood squirting out of her head. Then the IV Team joking about how bad her veins were and explaining that all kids are like that. But I will seriously have nightmares about this catheter and all the bloody piss I have seen in the last three days. I hate blood. I'm weird. I don't mind needles or poop or vomit but the thought of blood makes me sick. Bleeding out is my biggest fear ever. Ugh. Blood. And right now it's everywhere my daughter is. It might actually kill me.

I'm having a very difficult time with an issue we are having with her prescription and trying not to freak out. There was a problem in the communication of the prescription and I almost overdosed her the first night home on an antibiotic because of the directions on the bottle (like, it says take 5 teaspoons daily and it's supposed to be 5 ml). I would have done it too if I didn't trust my instinct and call my mom (a nurse) at 1030 last night. I'm calling the doctor again tomorrow for an explanation but it is tearing me up inside that I could have hurt her if I didn't know any better. I am so thankful that I have learned to trust my gut and my instincts. I just want someone to explain to me what happened and maybe apologize for making me almost hurt my kid.

All in all I need to remember that it was a good thing, if not a great experience. Like most of my life since the day I found out about them (exactly on year ago yesterday actually). Apparently I'm just meant to travel the more difficult path when it comes to them. Twin pregnancy. Leaving work. Their birth. I am so grateful it was a mostly benign problem with an easy fix and that we are so lucky to live in a place where amazing doctors can fix things like this. I'm not so spoiled to believe that it should have been perfect, nothing ever is, but I won't lie, there are many things I wish had gone differently. I'm just happy it's over and we can hopefully move on now.

Someday soon I will go into more detail about the hydronephrosis and pyleoplasty. I am starting to realize that there are many people out there who suffer from kidney health problems, many of them twins. I'm interested in seeing if there's a correlation between the two. Right now I'm going to drink a glass of wine and relax with my family (don't worry, they're getting pumped milk so no alcohol for them!)

Send my girl (and myself) some healing thoughts please!

Xo,
Maigen




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