"What would have become of me had I not believed that I would see the Lord's goodness in the land of the LIVING. Wait, hope for and EXPECT the Lord. Be strong and of good courage and may your heart (Ned) be sturdy and enduring.....Yes, Wait For and Hope For and Expect the Lord."

Psalm 27:13-14 (Amp)

Wednesday, April 2, 2008

The last leg of the race

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

13 comments:

Jessica said...

I can't believe how much beautiful blonde hair that child has! He's so big and cute. Thinking of you all!
Jessica Ferg.

kim said...

He is so beautiful (handsome), I can't believe how he is growing, so glad you had recent pictures, we were all trying to figure out who he looks like? Praying that everyday will get easier with the eating. Sincerely, In our prayers, The Alexander's Kim Donald Emily and Brock

Cadenne Hope's Grandma said...

He is adorable.

Yes, you're right--in many ways this is the toughest part of the journey, but with God all things are possible. I assume they have Ned working with an OT or a Speech and Language specialist to help him with his eating by mouth. I will pray for him and for you as you go through this with him.

I will pray for Kelly and her son as well. Please keep us all posted. You didn't mention if she is a believer or not.

Anonymous said...

Man I know the difficulties of getting a baby to eat. Landrie lapped out of a 1oz cup like a cat and Ava we had to tape a small tube to our pinky that was connected to a bag of breast milk to get each of them started. We had the lactation consultant with us for a long time. However, I loved it because it gave me the opportunity to help Danielle with feeding both of them. There is nothing like sharing quality time while they eat. I will definetly keep you in our prayers that Ned will catch on quickly!!!!

Jason Wofford

Anonymous said...

Ned is SO beautiful. My how he has grown. It's so amazing what your little guy has went through. He is a true 'warrior'...like his family! Ned is in our prayers constantly and we speak of him often. He has touched so many people, as have you, in such a blessed way. Ned will definitely overcome this hardship of learning to feed orally. Looking back, he has taken each step one closer to coming HOME!!!! I just love his little cheeks...just wanna pinch'em!!! Constantly in our thoughts and prayers,
Heath, Belle, Hunter, Carlton & Carlie Grace

Anonymous said...

precioooous!

Hope said...

Betsy, Ned is such a handsome little baby! I absolutely love those chubby little cheeks and angelic face. As always Ned and the Dellinger family remains in our prayers!

Hope

Jessica Singletary said...

What a gorgeous son you have! I came across you blog today while doing a search on CDH.

We were diagnosed April 7, 2006 and our daughter was born a month later at 33 weeks. She passed away shortly after birth.

I am going to play catch up on your blog and will pray for your family and Ned.

Jessica
www.parkersingletary.com

Anonymous said...

Hi Betsy,
Ned is soo cute! I am going to be in Raleigh from Thursday April 10-Sunday, so me and Danielle will probably stop by to see you and Ned. I hope you had a great birthday, and i can't wait to see y'all!
-Haley Alexander

Aep said...

Betsy,
I have been following your blog and your story on BOH and wanted to leave a little note.
I wanted to wish you luck with the feeding, I am sure Ned will get it.
Sending prayers your way!
Glod Bless,
Ana and Marco 3.2.07 LCDH
cp:marcoluis

Anonymous said...

Ned is so beautiful! I love the picture of him sleeping in his bouncy seat! He looks so peaceful. I can't get over how much hair he has! We thought that Clara had a head full (except for the bald spot on the back where she's rubbed it off!) We're so glad that he's doing so well. We're continuing to remember him and (and you all) in our prayers.
Ron, Michelle, and Clara

Honey said...

God truly is good!!! Ned looks awesome!! Delsin, Franky and I check in on his website often to see his progress...and wow!! Before you know it, you will be bringing a car seat to the NICU!! Keep the faith and never be discouraged. Know that we are always putting prayers up for you because blessings always come down. Ned and Delsin are living testimonies of God's Grace!! Pls feel free to contact me anytime.

Honey

Anonymous said...

WE love you!!!! Thank you so much for sharing your story. What a Blessing and inspiration your family has been to so many. Your faith and love as a family has meant so much to everyone. We will continue to keep little Ned in our thoughts and prayers.

Love and God Bless,
Susan,Allen,Zack,andMeg