This isn't the most flattering picture of fresh-from-the-bath-Lilly, but I love her rolls on fat on her arm. :)
In my last post, I took that picture of Lilly because I thought it was so cute how she was holding her hands together. Since then she has done it a lot more. I don't remember ever paying attention to my other babies bringing their hands together (except to clap) but for Lilly, I figure this is a pretty big step.
This weekend I talked twice with a local woman that has a 3.5 month old baby with Trisomy 18. The wee little girl (5 lbs. something) sounds like a fighter. (She was born at 2 lbs. 10 oz.) And she drinks from the bottle like crazy! Lilly needs lessons in that from her. This mother is still at the beginning of the journey of learning about Trisomy 18. She did not find out her baby had it until after the baby was born. When she learned that Lilly is getting close to 9 months old, she exclaimed that she now had some hope. In another conversation she shared that her relationship with God has totally changed. And that she considers herself blessed that God deemed her worthy to give her a baby with Trisomy 18. Wow.
The other day, my older daughter said it made her so sad to know that about 2000 babies diagnosed as having Trisomy 18 were aborted each year. She said she wished she could take care of them all. Then she said that when she grew up, she was going to "pray to have a baby with Trisomy 18." I was stunned. I wondered if anyone has ever prayed that their baby would be born with Trisomy 18! I told her that I hoped she had a strong heart, to be able to take all the heartache involved. I love Lilly dearly just as she is. But I still pray that God would completely heal her and shock everyone and even take away her Trisomy 18.
Some great news - for the last two nights I have done what the pulmonologist said and put Lilly down to sleep at night on her side. We have had fantastic results! First - Lilly slept through the night, both nights, for the first time in a long time. (I feel like a new person!) And second, her breathing has been so quiet. Wouldn't it be wonderful if it turned out that it was just her tongue blocking her breathing and that she doesn't need oxygen for sleeping after all? (If only it were that easy. But nuthin' is easy!) I only feel stupid for not figuring this out before.
I keep having a line from Psalm 127 run through my mind: "For so He gives His beloved sleep." (verse 2) Good sleep is definitely "beloved!!"
Children, of all ages, never cease to amaze me. It says A LOT to me that your older daughter sees EVERY baby as the blessing that they are. :)
ReplyDeleteyep, laying on my back to sleep causes me the same problem. feel like my throat is closing up. maybe she got it from me...
ReplyDeleteLilly,
ReplyDeleteI don't know what you think, But I hope Mamma has you a little Trisomy 18
sister! Then there would be 3 babies and one for everyone to hold!
There would be you for me,
And the other baby for Mamma,
And Hunter for Dad!
You are such a blessing from God! Such a nice thing to sleep through the night. Faith will get there at some point.
ReplyDeleteGrace
(Faith's Older Sister)
WOW! That is amazing that she would pray for that. It is a LOT of heartache. We had a trisomy 18 baby. The doctors kept trying to get us to abort her. My husband finally told them to stop talking about abortion because that wasn't an option. We had been told they don't usually make it past a few days after birth. I prayed that if she wasn't going to make it after she was born that God would take her. It was hard enough knowing that I probably was going to loose her let along have her for a few days and then loose her. God did take her at 18 weeks of pregnancy. I gave birth to her the next day. It was heartbreaking but God has used our loss for His good. I praise Him that our baby Hope is with Him. I am praying for baby Lilly! May she defy the odds and be fuly restored and grow up to be a child of the King! I believe we have a mutual friend. Susan Cox. She is the one who introduced me to your precious Lilly. She is beautiful!
ReplyDelete