The winds of change…

 

A ton of stuff has happened since Friday. Every time I would come to update my blog, something else would be on the horizon, so I thought, “I’ll just wait until I know for sure about that.”

Plus, I just plain haven’t had a lot of time. This is my crazy busy time at work, so trying to fit in hours to go there on top of being here when Annabelle needs me, on top of being there for my other kiddos when THEY need me… it’s just been a bit overwhelming at times. I even went to work at 4 in the morning on Monday and Tuesday in order to get stuff done and be back at the hospital by 9 for doctor’s rounds. *yawn* Yes, yes, I know sleep is important too. I’ll catch up soon.

Anyway, back to Annabelle.

So, last time I updated you she had lung issues and we were contemplating a trach and expecting to be here for another few months.

I’ve prayed for a few months now that God would allow us to be home by Christmas. I’d told God that I would LOVE LOVE to be home by Thanksgiving, but I would be okay with it as long as He gave us Christmas at least.

Well. On Friday it became clear that Christmas at home with Annabelle wasn’t going to happen. We were going to wean CPAP by a rate of 1 per week until she got to 5, then go to vapotherm, and we weren’t even sure it was going to work even then.

So, I gave God Christmas. I’d been holding onto it tightly in my clutches, determined that God would not ask me to give up my baby’s first Christmas at home. But God asked me to give it to Him, and begrudgingly I did. I would be okay with being here for Christmas. God knows what is best for my Annabelle, and if that is best, then so be it. And as stinky as it was, I was strangely at peace with it.

Well, Monday came along. Monday usually means a new doctor on rounds in the morning. (they alternate weeks…) I’ll admit. In the past I’ve gotten irritated when Monday rolled around and the new doctor would change plans up from what the doctor the previous week had set into motion. It can be frustrating sometime, this difference of opinion. BUT, this time, a part of me was hoping that another doctor would have a new perspective.

And, said doctor DID. She said… why wait so long to wean? Why not try her on a high-flow vapotherm and just see how she does? She hasn’t failed vapotherm in 2 weeks… let’s give it a go!

And Mommy said… this is good!

So we tried vapotherm.

And Annabelle said… this is good!

Well, at first she was like. what in the world??? She kept her stats up, but she was working very very hard to do that breathing. Her respiratory rate which is usually in the 30’s to 50’s was in the 70’s to 100’s. Her belly was retracting (trust me, it’s a bit scary to see and NOT like a normal baby breathes!) but all her blood gasses looked GREAT, even better actually than when she was on CPAP.

And the doctors said… this is good!

A day later, she was retracting less, her breathing calmed down, and this morning, her blood gas was the best I’ve seen it yet. Seriously, like better than even when she was intubated.

We went for a PICC line on Tuesday because her RA line was going bad. They told me they would likely have to put her on some type of breathing help (in many cases back in the ventilator) but that they would try to get it out soon after. Well, what do you know, my baby came back up here crying, on no ventilator, and when right back on her vapotherm.

And God said… I told you so!! I know what I’m doing!

And on Wednesday morning, I had a good discussion with our cardiac surgeon about the “plan” going forward. It was SO SO SO good to actually talk about a PLAN instead of operating in a “How do we fix our current problem” kind of mode.

So, here is the plan.

It’s actually pretty tentative, but at least I know their reasoning so I can understand better.

We are at a fork in the road. We can do one of two things.

1.) Do the Glenn soon, then go home. She is 4 months old on Saturday. They usually aim for about 4 months of age to do the surgery. So, if she is unable to go home due to respiratory issues, then He’d like to go ahead and do the Glenn sooner than later, like potentially in the next few weeks. As scary as this is, I also know that the recovery time for the Glenn is USUALLY less than the first surgery, and many times helps tremendously with respiratory issues. So if we did it at the beginning of December, that would mean… a SLIGHT chance of going home by Christmas.

2.) Go home, then come back for the Glenn. When they redid her shunt in her last surgery, he made it bigger to hopefully get her farther out. It should last until she is 6 months old, if not up to 8 months of age. So, if we can get her breathing well on her own without assistance, he would prefer to send us home and let her get stronger and have time with us. It is flu season, and he’d prefer NOT to do her surgery during this season for obvious reasons. This would be mean… a VERY GOOD chance of being home by Christmas!

So, either way… we have a chance at Christmas again.

To be honest, I feel like Abraham. God asked him to sacrifice something he dreamed of for a long time and had finally had within his grasp. He had to give up the dream and hope of a son to carry on his lineage. It was only when He truly acted in obedience to God and had FAITH enough to give us his dream, did God provide the lamb (if that’s the wrong animal, forgive me!) as a way of allowing Abraham to keep his son.

I feel like God just wanted me to come to the point of letting go of all my wants, my dreams, and surrendering to his will.

So many times we talk about trusting God to do XYZ. We name our wants and even what we think our needs are and say, “God, we trust you to provide this for us.” I think sometimes God wants us to say, I trust you Jesus, even if you don’t.

Some areas we still need prayer about:

• Stomach surgery. Potentially Friday…But just found out she’s running a temp, and they wanted her with no temp for 48 hours before they did surgery. Not sure if this delays things or not. And not sure why she’s running a temp… *sigh*
• UTI. Still have to do the studies to see why she’s gotten them a few times when there is no reason for it. 
• Puking. She’s been throwing up the last few days. We think maybe this is partially from weaning her meds, but also because she needs the stomach surgery.
• Weaning Vapotherm. They decided this morning to start weaning it. They weaned it from 12 to 10, and she did fine. Then from 10 to 8, and she started breathing hard again, so we went back to 10. So prayers for wisdom and discernment on the doctor’s parts on how fast to wean are appreciated. But… the faster she gets off, the faster she could go HOME. But then again… we don’t want to rush her either. *sigh*

And now for some pictures. Some CPAP and VENTILATOR free pictures!!!