Annabelle is stable on CPAP this morning. NO ventilator, thank Jesus, and our sweet, wonderful RT lady took the ventilator out of the room so we didn’t have to deal with its ominous presence anymore.
Plan is to try and wean CPAP today (potentially tomorrow as well if need be) and try to go back on vapotherm by tomorrow or day after that as long as she is still doing well.
We are getting an echo today to make sure no heart changes initiated her issue yesterday.
Still not sure what to think about yesterday. Our usual indicators weren’t there… her blood gas levels are usually not good, and they, while not GREAT, weren’t horrible either. Her incidents are usually initiated by a fever as well, and she’s been fever free for over a week. Her Xray was unchanged as well, and many times it is shows wetter lungs too.
So yesterday’s issue is still puzzle. Evidently she looked so bad that they even called and consulted her heart surgeon as well, which in my mind, is the equivalent of “bringing in the big guns.” Or in this case, talking to them:-)
Doctor’s rounds this morning were a little disheartening though. I think at this point, it isn’t a matter of “if” she decompensates and needs to be ventilated, but more like “when.” It’s a very hard thing as a mother to know that we are just sitting and waiting for her to get worse, and besides waiting for a heart and waiting for an answer from Boston (which is just more waiting), there isn’t much I can do to help it.
We’ve waited for a lot of things during this process. Waited for her to be born. For her first surgery. During her surgerys and Caths. For her to come of the ventilator (times about 8 to 10 times or more, I lost count.) For her to go up to the floor. For her to go home.
We’ve always waited for these good things with eager anticipation. But to know we are waiting for her to get worse now… It’s more than a little scary.
But God is still in control. He is still on his throne. He knows our pain and our frustration. More importantly, he knows Annabelle’s pain and her hurts. He knows how hard it is for her to breathe good, for her heart to function enough to supply her body with the oxygen/blood it needs. He gives her strength for each day, as he does for Scott and I.
We are believing that He will continue, and that we will have answers in His perfect timing.
But even while I know all this, the wait is not easy. It is long, it is hard, it is grueling.
But I don’t think God ever told us life would be easy, hmm?
I am happy to hear that she is doing better. I cannot imagine how your heart much ache, my heart aches for you. Please know that you, your family and Annabelle are in my prayers. Praying for peace, praying for healing, discernment and wisdom.
all i have to say is uggggg…i wish there was more that i could say but i feel like uggggg says it all…i can relate to the waiting and it is pure torture…
we are continuing to pray….
How hard it must be for you to always have to wait! But it's so good to know we have a God who understands our pain and impatience and hurt and fear …
No, He never promised us an easy ride, but He did promise us His unfailing love and help in times of need.
Praying as always!
Hang in there, we are praying!
Krista and Family,
My husband and I are praying for Annabelle. May our Lord keep his healing hands over all of you this week.
Lots of love from MA,
Continued prayers for Annabelle, you, Scott and those big sisters who want their baby sister home. My heart aches for all of you…….I am just praying for the the Lord to continue to hold her little unhealthy heart in His Mighty Hands and to take care of her, He knows all her needs.
Waiting can be so difficult. Continued prayers.
Hi Krista –
Praying you'll soon have some answers and direction. I know in the meantime you're loving on your baby girl, and it's a comfort to her.
I've read your posts many times without commenting, Krista, but your faith always inspires and uplifts me. We've never met in person, but I want you to know how often I think of your family. Your baby is so beautiful, and she is in my prayers. Be assured that there are many of us out here waiting with you. God bless.
Still praying in MI, Krista. She's so beautiful.
I agree with roxy. We are all waiting and lifting Anabeele and your family in the Lords hands. Psalm 91
our love to you and your beautifull family thank you for sharing. I have her on every prayer chain. 🙂
We continue to pray for STRENGTH and PEACE that only God can give for Annabelle,you and your family. Waiting can be so hard. Like the the Red Head said, "ugggg!", but God will help.
No, I don't think He did…still praying.
Blessings and hugs,
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