If we thought yesterday was good, today was even better. Henry kept the girls at home so I could have alone time (as Natalie calls it) with Ryan. He was asleep when I got there, but his nurse informed me he was having a really good day. No fighting the vent, and no holding his breath (something he does when he’s mad). The latter is especially problematic as holding his breath causes his numbers to plummet and his face turn from red (he’s typically crying when he holds his breath) to purple. She also told me he was alert for about 2 hours this morning, looking around and happy.
I’m happy to report he also woke up several times while I was there which gave me the chance to talk and sing to an alert baby. It’s makes a big difference, believe it or not, when you actually know your baby is paying attention. I mean, who wants to talk to someone who isn’t actively listening (do I hear an amen from the ladies)?
I also got to hold him again (yeah, this is number four!) and he woke up for part of it. That was really fun. I sang him a bunch of songs that I normally sing to the girls at night. I figured he might recognize them. He fell asleep to my singing.
Ryan continues to do well. His numbers are more stable by the day and he is up to three hours on and one hour off the CPAPs. This means he is breathing on his own for 18 hours a day. He started the CPAPs last week at one hour on and three hours off. They will look to extubate him once he is breathing the daytime hours by himself, only resting at night. They are not sure when he’ll reach this step since it is a case-by-case schedule. However, it seems the CPAPs are working to strengthen his diaphragm.
(c) 2016 Leighann Marquiss
Comments (13)
Yay Ryan! Thank you Lord!
Have you sang jingle bells to him when he has been awake? Just wondering. LOL
I am dying to know what you love to sing to your little prince!We all have our favorites.. some silly … some sentimental… some so they’ll know the Lord but all from the heart of Mommy! I am so excited that you got to hold Ryan again today and he was awake and all that singing must just be grand! Now I am going ot be thinking about your two when I sing to Scott- Wesley at night in the rocking chair….
Yeah for the little king! I can’t help thinking that this increased time that Henry gets to have with the girls on his own is great too. I know he’s always been an engaged dad but having them all day for several days is so fun for them all.
Thanking God for His healing/strengthening touch on Ryan’s diaphragm. Go Ryan Go!
Jennifer
Yeah! Praise God, you can do it Ryan, we continue to pray for all of you!
wow!!! he’s doing SO great! and so are YOU!!
Yea…. for my little boyfriend. I am so EXCITED to read this. Go Ryan! Go Ryan! Go Ryan!
And what do you mean that is different to sing or talk to a baby that is actually alert and listening?
My kids are very much active and alert and I can’t get them to listen to me to save my life.
LOL>…..
Big Hugs
So Exciting to hear things are going well with your little guy!
Praisallujah!! I am so happy to hear things are going better. We are really praying for you all. I heard you loud and clear about talking to someone who is actually listening, LOL. Keep on singing.
What wonderful news about a good day! You dont know me but my husband (Brent Bushey) is friends with someone you know. My daughter Madeleine lived in the room Henry resides in now at Childrens (we called it the garden view room b/c of the lack of windows) for 4 months and we know every nurse and doctor in the CICU and have utmost respect for Dr. J. While our stories aren’t the same, many of the emotions you write about hit very close to home. My husband and I hang on each update of your blog the way others hung on ours. Our thoughts and prayers are with you -keep singing and laughing around Henry. All of the positive energy will over power all of the beeps, peeps and dings he hears on a daily basis.
One last thing – keep advocating for the little guy, no matter how crazy they think you are. You are mom and who cares if they think your nuts! I am positive Madeleine is with us now because we demanded information at every single step of the process and never let anything major happen without us knowing about it.
Kirsten Wright
That’s all wonderful news! I am so glad that you were able to share some very special moments with your little prince. God is so good and knows exactly what we need to make it through. Hang in there!
Heart hugs,
Faith Mahoney
What an answer to so many prayers, that Ryan is doing so well!
Keep singing… Your daughters are so cute! And Natalie is a great talker. So inquisitive. Love it. I loved the picture of Ryan with his eyes open. He is a little handsome. We are praying for strength for all of you with all the changes each day brings. God bless you all!
Wonderful, wonderful, wonderful!!!
Keep it up Baby!’
<3
Karin