Wednesday, December 17, 2014

The past week

This past week has been the hardest since having the girls home. I finally broke down yesterday and did something I hardly ever do. I cried. A lot. for about an hour I just cried. Lilah has been refusing her bottles and we are back to tube feeding her. She was still puking up all her feedings. This was even after the doctors started her on reflux medications. She was screaming all throughout the day and night, at the top of her lungs painful screaming. Nothing helped. So yesterday after refusing her bottle, she gagged and up came her tube through her mouth. This is only the second time her tube has come up and out her mouth. Luckily we can hook the tube through her nose and pull it out quickly. I lost it and felt so defeated as a mother. I have said this a few times, but I was feeling more like her nurse instead of her mother. Most of my day consists of sorting medications, replacing feeding tubes, blah blah blah. You all know because I have mentioned it over and over. It is hard to understand unless you have been there. Having a preemie is hard, having a preemie with a HUGE hole in her heart is harder. I just want to feel like I am bonding with my daughter. OF course with all the added stress of her medical issues, I get frustrated and upset. None of this is her fault. I just want to do the best for her.

Today was her cardiology appointment. Everything is the same. I asked if there was any chance her hole would get smaller and they told me no. Because of the size of the VSD her right artery is also offset which is causing issues also. After fixing her VSD the artery should move back into place. They want to wait until after rsv season for the surgery ( which will be mid February or early March). That is another issue. We are still fighting our insurance company for them to cover the series of shots for her. The Cardiologist is off next Wednesday and she is going to call them on her day off and let them know AGAIN that Lilah could die if she gets RSV. She fits into every criteria for these shots. We have been fighting them since Thanksgiving. It is freaking insane! 

Once Olivia starts daycare, they will need to sleep in seperate cribs. We will have to be very careful on pacifer sharing etc. If any of the kids at daycare gets sick I have to remove Olivia so she doesn't bring anything home to Lilah. Right now our job is to keep her healthy and gaining weight until the surgery. That may seem like an easy task, but I assure you that it is not. 

I can't wait to see my little girl healthy. See her growing like her sister. She her with energy. See her not sick and hurting. I can't wait for that day. It will be the one of the best days of my life. 

8 comments:

  1. Oh Toni, this just sucks. I wish I had some words of wisdom. All I can say is that you're doing an amazing job and at some point, hopefully really really soon, this will all be in the past. Holding you in my thoughts.

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  2. My heart hurts for you going through such a difficult time. Praying for moments of joy and bonding. Praying for good health all around. You are doing great!

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  3. I'm so sorry this past week was so tough. You're right about not being able to understand absolutely. But I can empathesize and say that I know now is very hard.

    I'm glad your cardiologist is fighting with your insurance company. I almost wonder if going to the local news with this story would be worthwhile. Shame on them for being so cruel.

    Continuing to think of you and your family. May this next week be easier on all of you.

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  4. So sorry you had such a tough day. Sending a huge hug and my best thoughts for your family

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  5. You are one tough Momma for sure!! I don't have any idea how your days are but I can only imagine how hard it is based on everything you have described :( Know you are in my thoughts and prayers and so are your precious girls.

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  6. Oh mama, i am so sorry this is so tough for you and her... but you are SO strong! and you got this. and you are the BEST momma to both your girls. hang in there and know you are doing your best. sometimes you just need to cry it out and then you can start fresh... sending lots of prayers to little lilah that she is happier for you

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  7. Whew. Girl. Everything you just said is so incredibly honest and real. I have always admired you for that. Hugs coming to you from Chicago. Many MANY hugs.

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