Baby Jonah

Baby Jonah had a pretty good day, but he did have a couple of rough spots to overcome. He continues to amaze us with his strength and tenacity. He has much to teach us.

He is more like every other newborn than he is different from other newborns. He cries when he's hungry, he responds to the loving touch of his mother and father, he is quiet and calm in the morning, and he likes to hang on to his feeding tube with his hand!

Here is the lovely Miss Isla, showing her take on sibling rivalry by climbing into Baby Jonah's car seat!! Some expressions by young children are universal!!

We celebrated BirthDAY number 6 with some of Sister C's yummy brownies.

And we are looking forward to the arrival of Hannah, Eliza, and Phoebe.

Happy Day 5 to Jonah Adam

Tonight we celebrated BirthDAY number 5 for baby Jonah. It is becoming part of the routine. We finally ate up all the cupcakes tonight - we are thinking of using brownies tomorrow night!!

Here is is with the modified binky. He seems to like it - it's great to be able to soothe him with it.

Lots and lots of visitors - and helpers!! Donna came on Wednesday, as did Heather. Bonny came today, but it was while I was gone, so I didn't get a photo.

Bill came too - and helped Porter set up the "rock tumbler" he got for his birthday on Tuesday. Seems like we find tasks for everyone!!

Proud - and tired - Papa!! He and Dawn tag team sleeping and caring for Jonah. It's becoming a routine - and they are a great pair at making it work.

I was thinking that just a week ago, we were preparing to welcome and say goodbye to this baby boy we were ready to receive into our hearts. We had geared ourselves up for it. He came, and though we had been told to expect his life to end, it has not yet. And so we are shifting gears, getting out baby clothes and blankets and getting another package of diapers!

We know that the respite is not a guarantee. We continue to be ready to say goodbye. However, we are not weighed down with sadness. We are hunkering down with family and friends, being on the receiving end of so much love and kindness, growing to know and love even more a tiny little boy who can really only respond to our touch.

And always, tomorrow is truly another day!

Update

Baby Jonah has good moments and not-so-good moments. There are lots of visitors, lots of tears, lots of food and flowers and love.

His dad modified a binky so he could suck on a pacifier and it seems to soothe him. The need to suck is paramount for babies, but Jonah needs a feeding tube, so he doesn't get much chance to suck, so this is nice little bonus for him. His mom and dad are continuing to take excellent care of him - I am so impressed with the way they are handling everything this situation has thrown at them.

They will post with pictures one day - meanwhile they are busy loving and caring for their family.

And tonight we had 4 candles on his birthDAY cake.

Jonah

I guess it's kind of odd that I haven't written anything yet about baby Jonah, but I haven't really known what to write so I just...haven't. Not for lack of thinking or talking about him, because he has been a reality and a topic of conversation at our house for months now. Tonight after watching a video of his mom holding him, I feel compelled to share a little of his story with you.

Some of you know that my nephew Jonah was born on Saturday with full Trisomy 13. Harry and Dawn (my brother and sister-in-law), who live near my parents in California, found this out at his level II ultrasound last spring and have been preparing since then for the eventuality of his birth and death. They hoped he would make it full term and that they would have a few minutes to hold him. Now he is 3 days old, after being born 7 pounds at 40 weeks, and home from the hospital--all miracles. His condition has been up and down--he was doing really well on Saturday and Sunday, then not as well Sunday night, then a little better on Monday, then worse today. He is surrounded by his family and lavished with love on all sides.

I'm not flying out for a few more days (my 2 sisters who also live far away are flying out too) and although I have been hoping so hard to be able to meet him and hold him when I get there, I don't know that that will happen. There's pretty much no real way to know in advance when he will die although his struggles to breathe are an indicator. My kids have been telling me ever since I told them about baby Jonah that he is going to live with Jesus and Heavenly Father, but somehow that isn't something I want to think about quite yet. Little Jonah's condition, caused by an extra chromosome on the 13th pair, caused several deformities, both internal and external, which make it difficult and ultimately impossible for him to live here on the earth with us for very long. When I talked to Harry yesterday he said it's like Jonah's running a marathon. 3 days isn't very long for most people but for little Jonah it might feel like a long, tough race that he signed up for long ago and is now in the thick of.

I have been thinking constantly about Harry and Dawn, mourning with them from thousands of miles away. They are such loving parents and take such good care of their kids. I'm drawn again to 3 Nephi 17: "He took their little children, one by one, and blessed them, and prayed unto the Father for them. And when he had done this he wept again; And he spake unto the multitude, and said unto them: Behold your little ones." This has been the first experience I have had of loving someone so much whom I haven't met. I can feel his little spirit so strongly. I feel so much love for such a tiny boy who lives so far away.

Thank you for your prayers and support so far for this wonderful family. I am sure that Harry and Dawn and Jonah, and Jonah's 2 brothers and 2 sisters, could use some more....and more, and more.

-Eliza

Happy Day 3 to Baby Jonah!

Harry started having BirthDAY celebrations for baby Jonah. We celebrated day 3 tonight, along with Porter's birthday. It's a nice little "tradition" for us to celebrate - and ultimately remember.

Baby Jonah update

Things are busy and hectic around here, as you can well imagine. Harry, Dawn, and Baby Jonah came home Monday afternoon. He has his ups and downs. He will seem to be failing and struggling to breathe, and then he rallies. We are focusing on making each moment meaningful.

Harry had the wonderful idea of celebrating his daily birthday each night along with family prayer - so we have had 2 birthdays - complete with cupcakes and candles. Tonight we will combine the celebration with Porter's.

The children get up and go to school, and they have shown a lot of understanding and maturity. Friends have provided play dates for the kids, ward members and neighbors have brought meals and flowers.

Hospice care has been provided, and all those who have come to the house have been kind and supportive.

It's not the scenario we might have chosen, but we are finding love and comfort being with each other. We feel the love and support that is being offered by all of you.

Harry has taken lots of pictures and plans to make some kind of commemorative book or post. It probably won't be really soon though.

And speaking of Harry, he was honored by Burbank Police Department as "Officer of the Year."

Life goes on, as you can see.

The newest Terrill grandchild

Jonah Adam Terrill came to our family this morning at 10:14 a.m. He weighed 7 lbs. 2 oz. and was 19 inches long. He is still holding his own. We are grateful for all the time we have been able to be with him - to hold him and to feel the sweet spirit that is there in the room with him.

We were waiting in the delivery waiting room - Harry came out a few times with updates. When he led us in finally, we were not sure what to expect. But then we heard his sweet little newborn cries - and we felt the comforting spirit of a kind of normalcy - God is indeed aware of each one of us. How thankful we are for the teachings of the gospel of Jesus Christ.

We all appreciate the prayers and love and expressions of support. They have buoyed all of us up. We will keep you posted, but for now we want you to know that we love this little boy. We are grateful for the Lord's tender mercies that he extends to us. We are grateful to know that we are forever family. We are grateful that Dad and Harry were able to perform the priesthood ordinance that gave him a name and a very special blessing.

We love you sweet baby Jonah!