Wednesday, September 29, 2010

I was warned...

I was warned that this road is long and hard. I was warned about the rollercoaster we were about to get on. I was warned about the CHD dance- one step forward, two steps back.

Nothing prepares you for it until you are in the midst of it.

I'm struggling tonight. Really struggling. I'm watching Joshua struggle to breathe. I'm watching his heartrate sky rocket. I'm watching his sats sit at 100%. He just had a second surgery 2 days ago that was supposed to correct that. I'm struggling with how this is fair. Why my baby? Why any baby?

My friend Kim's son had his cath today. The cath went well, but now her baby is struggling to get his sats out of the 60's. Why?! Why does this happen?

We moved back to the NICU today. Joshua was supposed to be better. He's been doing so well, and all of a sudden. BAM. He's back to the same old same old.

I wish I could take this from him. I hate watching him suffer. If I could give him my heart, I would. But I'm helpless. There is nothing I can do, but sit and watch.

I'm not sure how much more of this I can take. I'm not sure how much more of this Joshua can take.

I don't think I even have words to accurately describe how frustrated, worried, and angry I am about all of this. I just want my sweet boy to be well. I'm tired of watching him suffer.

I was warned, but had no idea what this was going to be like.


mina said...

Continued prayers for Joshua, also for your friend's son!

KR said...

My heart is aching with you. You have my urgent prayers tonight and I am begging God for his infinite healing and grace for Joshua.
Another heart mama

Anonymous said...

Jill, I'm so sorry to hear that Joshua's sats are back up and he's having a hard time. I remember the ups and downs all too well. I remember taking a LOT of deep breaths, just trying to deal with the stress and uncertainty of it all. It's so very hard to watch your child go through so much. You guys are in our prayers.

Kelly Dees

Carolina Carters said...

Oh my gosh, Jill! Praying, praying, praying...for that sweet boy AND his mama! I hope you can feel the prayers for your family. {HUGS!}

Indreni said...

Dear Jill, we haven't met but my son also has HLHS. Much love to you and Joshua, and prayers too!

nabrissa said...

so sorry ;(

Anonymous said...

Jill, unfortunately, not one of us as heart parents knew until we were in the middle of the storm. Although we knew ahead of time, like you, we had NO idea what we were able to walk into.

Hang on, don't ever give up hope and believe. Just believe. I wish I could say that it gets better....better in what way? I STILL worry about my daughter and she is 2 1/2. I still study her face, look at her fingers and then turn to my husband and say "does she look a little blue to you". I still dread "heart dr day" when we get a echo and then wait for the dr to come talk to us. I hate the fact that she has to take medication every single day for the rest of her life, I hate the fact that she may not be able to have children due to the stress it would place on her heart, and I hate the fact that every single morning I wake up, the very first thought to pop into my head because I cant stop it is "is she still alive" I hate the fact that I am sitting here crying. But, in all, yes, it does get better....

Shannon Egan

Shannon Egan

For Our Brave Heart, Sam said...

It really is such a cruel have a baby perfect in everyway but to have this one vital thing be so wrong. Please know that all of us heart families are right there with you, and we are praying so so hard.

Jenn said...

I am praying for Joshua.

Molly Alisa Photography said...

I am so so sorry Jill.

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