We have finally started attempting to teach Ned to eat by mouth...he isn't very interested in the whole prospect. He is taking about 5cc's by mouth....his feed volume is 65 cc's every three hours? You can see we have a really long way to go. He doesn't really understand the concept of sucking...just chews and happens to swallow, while gagging, some of the milk. This is obviously going to be our biggest hurdle on the road to home. Please keep this in your prayers. He is such a hard little worker though and has kept such a pleasant attitude about continuing to try. I am thankful he isn't violently resisting or I would feel somewhat abusive! We'll just keep at it until he starts to get the hang of it.
He has weaned down on the flow of the vapotherm oxygen. Today he was on 2 liters and they'll probably bring him down to 1.5 liters tomorrow. Once we hit the 1 liter mark, we'll transfer to straight oxygen which we can bring home with us if necessary- so we're really close in that respect.
I have several other prayer requests that don't relate to Ned at all. First, one of Travis and my classmates from high school has a father who has suffered a massive coronary attack last Friday. He has undergone quad bypass surgery and valve replacement but is still struggling with the recovery. Please pray for his healing and his family during this time...they have been very faithful in praying for Ned and I would like for their family to feel the same support we have felt.
I also met a girl in the Ronald McDonald house who is pregnant with a son who has been diagnosed with CDH and hypoplastic left heart syndrome. Her name is Kelly and her son's name is Charlie Ray. One of the doctor's in Charlotte misdiagnosed Ned with the same heart defect early on in my pregnancy and most of what I remember is that the repair for that heart defect requires about 4 surgeries. I spoke with her a little bit about how God worked on me during my pregnancy and what a miracle Ned's healing has been. I am hopeful that by seeing what God has done for Ned, she can find hope and peace in her situation. She isn't due until May, but has had some early signs of labor so she is staying her until delivery. Please keep her in your prayers.
That's all for tonight....gonna add some pictures below. Ned is really gaining weight...he's up to about 8lbs. 2oz.....Yeah!!!! They weight gain is the highlight of my day, everyday!
Much love and many blessings,
Betsy, Travis, Jack & Ned