Today was very emotional at different points for different reasons.
When I first got up to Mira's room this morning, I saw a stack of emails on the window sill that hadn't been there the day before. When I picked them up and looked at them, I realized they were e-cards for Mira, Joe, and me. UPMC has a program where you can send people e-cards, and a volunteer in the hospital will bring them to Mira's room each morning. As I read through them, I cried because it was so touching to feel how much people care! The cards and thoughts and words were so beautiful and caring! Just seeing and feeling how much people care about Mira and knowing how many people are pulling for her from all over the place is so beautiful and means so much to me! All I want is the best for her, and knowing that so many other people feel the exact same way is so comforting as a parent... it just left me speechless, and in awe, and so thankful to everyone that sent us a card! Thank you all so much! They were so beautiful!
Then a couple hours later, a different type of emotional occurrence happened... One that I wish on no parent! I was hanging out with Mira, who is usually just lounging and sleeping, and you can tell that she's pretty out of it, off in la la land. Well as I was rubbing her skin, I noticed that she was really alert. Her eye was actually open, and she was looking around, and she wasn't in a deep slumber, which is the only way I had seen her up until this point. As she became more and more alert, she started getting really fussy. As her Mother, I just want to pick her up and soothe her, but I can't right now... no one can. Within a few minutes, she started screaming, and it was clear she was in a lot of pain. I'm assuming that the pain either made her really alert, or that because she was so awake, she was able to acknowledge the full extent of her wounds right now. Either way, my baby was in pain, and there was nothing I could do! She was screaming for a half an hour! The nurse gave her morphine, and all I could do was rub her nose and talk her through it while we waited for the pain meds to kick in. I would've given anything in that moment to take her pain myself. Anything! I don't know if it was her head hurting her, or her back, but I wish I could've absorbed it! All I could do was put the one side of her incubator down and get as close to her as possible so I could rub her nose and caress her skin, and speak softly to her to let her know I'm here. Mommy's here, and I'm so sorry you're in pain, but everything will be okay! I promise it will go away soon, but I'm not going anywhere! She clenched onto my finger, it was the first time I got to hold her hand, and she would squeeze my finger for dear life and tense up her body every time the pain escalated. It's a terrible thing, to know your child is hurting, to watch their pain and not be able to take it away, to feel so helpless even though there's nothing you wouldn't do if you could! I wish it on no one! It's sad when she's on the morphine, because she is so out of it and you wish she could be alert, but now that I've seen the alternative... I would much rather her be on a drug-induced cloud 9 than to see her distressed and hurting and desperate for relief. She's only needed morphine a couple of times in the past few days, so I'm glad she's not on it all the time, but if that's what it would take, then so be it. I never want my children to hurt like that again.
After Mira felt better, Joe's Mom (Brenda) and Step-Dad (Jim) came to visit. Mira was in a deep sleep when they got here, and they got to visit with her for a while. When they were done visiting with her, Brenda, Jim, Joe, and me all hung out together. They brought us some food and stuff, and it was so nice visiting with them! I was sad when they had to go, but I had one more emotional thing to deal with tonight. Joe had to leave tonight because he goes back to work for two days starting tomorrow. Joe and I had gone up to say good night to Mira and so he could tell her goodbye before he left. I got hit with a flood of emotion when I was stroking her cheek. I was so glad to see her resting peacefully, and no longer in pain, but I was so sad to look at Joe and know that he was getting ready to head out... he kept asking me why I was crying, and to tell him what was upsetting me so he could make me feel better, but I couldn't talk... I just kept crying. Seeing her better was so emotionally relieving, and at the same time, seeing Joe saying goodbye to her was so emotionally taxing. It was a very confusing cry that I had no control over. I'm so glad my sister is here with me, but I didn't want Joe to go! I already miss him so much, and it's barely been an hour since he left. He didn't want to leave, either, but he also knows that he has to keep our household supported, so he has to work when he can. Right now, Mira does not have another surgery scheduled until Tuesday, so he's going to work until then. I hugged and kissed him dozens of times, and he made me promise to take it easy and not over-do myself while I'm healing. He's my rock, and my protector, and my best friend, and I don't want to be many places without him by my side right now. It felt like letting him leave was going to kill me! But, nonetheless, I have a job to do here for our little miracle, and nothing is going to hinder me from doing so.
A very emotional day, indeed, but she is okay, and that's all that matters! I'm going to rest now and keep my promise to Joe that I'll take care of myself, as well as our daughter. Good night everyone! I'm sure I'll put up more pictures tomorrow! Love to you all!
About Me
- Caytie
- United States
- My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.
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