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.

Feeding day!

Joshua had a boring and restful night last night. He has been receiving a little bit of my milk by NG tube (and when I say little, I mean 5ml's over a 1/2 hour....)

Today he is going to get 10mls and we are going to PO feed (by mouth!). Hopefully he will tolerate it! Poor kid is hungry!

We are also problaby (about 85% sure) going back to the NICU today! I'm amazed at how he just flew through this surgery. God is so good.

Finally, I got to hold my little peanut this morning for the first time since surgery Monday morning. (You remember....when they had to basically rip him out of my arms to take him back for surgery?!) It was heaven! :o)

Good Morning Mama!

It is a good morning when you walk into the room and see that he's been extubated!

It's also a good morning when you see that your nurse is your favorite nurse!

However, he's still satting in the 90's. The surgery yesterday was supposed to lower that.

The doctor is going to get him off the Milrinone and hopefully that will lower his sats.

I'm praising God for His goodness and provision, but begging Him to get those sats lowered.

 I really don't want to keep cutting my baby open.

Surgery Update

Joshua's surgery was (so far) a success.

He was in surgery for just over an hour (i think...i didn't really pay close attention to the time....)

The doctor was able to just clip the shunt rather than have to do a complete revision. That is great news because he did not have to go on the bypass machine.

The surgeon is fairly sure that this is exactly what he needed and that the shunt is the correct size now.

Currently, he is still intubated (on the ventilator). He is using 70% oxygen to help him breathe. We are waiting for him to start breathing on his own over what the vent is doing, then they will talk about extubating him. Right now he is in a bit of pain- we can tell by the high blood pressures and lower O2 sats. His sats have been in the mid 70's (right where doctor wants them) but when he's in pain and needs more pain meds his sats drop to the low 60's. He is off the Fentynal drip for pain and strictly on morphine which seems to be keeping him comfortable.

In all, we are just now waiting to see what the next 24 critical hours bring. He's doing great right now, but as we have learned quickly, what is good one minute turns bad the next. If everything continues to go smoothly, Shane will go home tomorrow night and hopefully we will be back at the NICU sometime later this week.

(We will still have to come back in another 2 to 4 months to have the 2nd stage surgery. We still have an extremely long road ahead of us for the next few years.)

Once again, thank you so much for all of your prayers. I was truly at peace this morning and I know it was because of the prayers of everyone lifting us up.

I'll keep you updated as we know more.

Our snuggle bug this afternoon recovering from surgery.

Just an Update

I'm not going to go into the emotional aspect of this. I'm too emotionally drained to get into it tonight. Please read my post below to read about the emotional/spiritual part of it.

Here are the facts:

Joshua has his 2nd heart surgery tomorrow morning (Monday) at 7:00am. We will meet with the surgeon at 6:30 to get our final questions answered and to review exactly what is going to be done.

Technically, his surgery tomorrow is not considered "open heart surgery." Open heart surgery is when they literally have to cut the heart. This surgery will not require them to physically cut the heart. They will however have to reopen his chest through the sternum and work inside his chest cavity. It's still a major surgery, just not as major as the last surgery he had.

Please continue to pray for our sweet boy. We have spent all day today cuddling, singing to, and loving on him because we don't know what the future holds for him. There is always the possibility that he may not come back to us tomorrow.

I will update on both facebook and twitter tomorrow. (It's just a quick text message that I send to both profiles.) Joshua, Shane, and I are all leaning on your prayers tonight and throughout tomorrow.