I've had lots of worries on my mind this week. I think I had this plan in my head that after we came home from the hospital after the Glenn that things would be 100% different. But I forgot about that fun period that lasts about 2 months called recovery. Normally we're in the hopsital for all of the recovery period and then some, but this time we are definatley doing the recovering at home. Which is good, and bad. It's hard to watch her go through withdrawals. She shakes and vomits and just looks downright scared. We came down on the dose a bit and it made things worse, she has been throwing up every feed since, so we have to go back up.. It's a little discouraging since we don't get our Bela back until those meds are gone. IT's okay though, we just have to move a little bit slower. Her breathing has been very loud and it seems sometimes like she is trying so hard to breathe. Her oxygen sats have dipped into the 60's when she gets really agitated and she turns an awful color. So we took her in today and we actually had some good news. Her heart function looks great and there was no fluid around her heart or her lungs. So they are all just normal recovery things that will just have to get better over time. I was glad to hear that they are normal and expected. She will just need her time, probably about 2 months or so to be all better.
And then there are the meds!! 10 of them at 6 am, 7am, 8 am, 9am, 12pm, 4pm, 8pm, 9pm, 10pm, 12am, and 4am. Around the clock. The nurse told me today I looked tired and I said, 'have you seen her med and feeding schedule?' But her meds will slowly be weaned down and eventually she should only be on about 3 or 4.
I am so looking forward to finding some sort of normal groove to my life. We don't have to go back to see the doctor for another 3 weeks...that seems like forever!! Hopefully Bela will allow that... :)
Some things I'm looking forward to:
Finally getting around to potty training my almost 3 year old.
Being a full time resident in my home now instead of a visitor from time to time.
SHOPPING for Bela!
Holding a calling in church.
Sounder sleep, and more of it.
Getting rid of the darn, beeping pulse oximeter.
Doing another swallow study and hoping for good results to be able to start bottle feeding again.
A stronger baby with every passing day.
A lot less stress.
Seeing my friends, hopefully I still have some of those :).
Spending more time with my boys.
Less vomiting, more growing.
Going back to church with my family of four.
Doing my own grocery shopping.
Being able to go outside and not die.
Here's Bela Boo this week...I must say she is looking fabulous for 3 weeks out:
This is Benson sleeping in his "Bat suit" as he calls it. Daddy brought it home with him from work a few days ago as a surprise for Haloween and Benson hasn't taken it off since, except to wash it once. He even wants to sleep in it.
This is what happens lately when I try to take a picture of Benson:
At least I got one! I can't get over how dark Bensons eyes are and how light Bela's are. Some kids come out and look like clones of their parents, not mine!
We're so blessed and are very grateful for those blessings. I'm so humbled and touched at the comments that are left on our blog. I am so amazed at how many lives have been touched in some way by our sweet Bela. We know that the Lord is using her and this experience to teach us and to teach others about patience, love, understanding, compassion, strength, endurance, and the beauty of life, now and in the life to come. I hope that each one of you that reads this has been able to see the hand of God in all this and the love that He has for each of his children. Prayers really do get answered...
Of all the things that I know to be true, I have been most grateful to know that I have a Savior that suffered and died for me, not only for my sins, but also for the pains and sorrows of this life. Through him, I have come to learn that we can recieve strength when we seem too weak, comfort when it gets too hard, and help when our burdens just seem too heavy. I have prayed many many times for Him to take away Bela's pain and suffering because He has already felt all that for her. And each time I do, I feel so much peace that He is doing just that. How blessed I am to know that!