Tuesday, October 28, 2008

One More Day

We arrived at the hospital this morning and received news that they want to keep Josephine one more day. They want to be sure of one of her medications before they send us home. Apparently, the Digoxin level was not quite right yet. So the plan is to room in tomorrow night and come home on Thursday. We've already checked out of the Ronald McDonald House, so we'll have to make a phone call to see if they can accomodate us for one more night.
A hospice worker also came to speak to us today about setting up care for Josephine. We will have a nurse that will come in 2 to 3 times a week to check on Josephine and make sure she is comfortable. Our nurse will also help us to make the arrangements for her when the time comes. We have elected to bring home oxygen for her. She doesn't need it all the time, but when she gets agitated, her heart doesn't pump as efficiently and her lips start to turn blue. This will just be a comfort measure for her and is not meant to prolong her life. They will be working very closely with our pediatrician, Dr. Russell, to make sure that Josephine has the proper medications and care during her time at home.
Jon and I have been going through "teaching" as well. We know how to give her her feedings and medication. I think the only thing left for them to go over with us is how to insert her feeding tube. Once inserted, this tube is good for 30 days, so unless she pulls it out, we'll only have to do it periodically. We are excited to be able to room in with her tomorrow, but also a little nervous since we know how much care our little pea pod needs.

I noticed the other night that Josephine looks a lot like her sister, Marian. She has really started showing some color, and her olive skin tone complements her dark hair. She does have brown eyes already. I wonder how Marian feels about being the only green-eyed child.... :)

We got a phone call from Marian this morning on her way to school. It is such a blessing to have such a loving little girl. We are missing her and James very much. (Of course!) And we are very grateful that they have been able to stay with their Grandpa and Grandma Napier during the last week. I know that they are happy there and are well taken care of. But we will be so excited to be home with them later this week.

I have appreciated reading all of your comments and emails during the last few days. Many of you have told us how you are comforted and encouraged by our faith and strength. I can only say that this has come through our deeply founded testimonies in the gospel of Jesus Christ. If it weren't for the knowledge that we have of eternal families and the covenants we have made with our Heavenly Father, this would be absolutely unbearable. We are very lucky to have been blessed to have the gospel in our lives and we are thrilled to be able to share our testimonies with you. I have added a couple of links to our blog that help to explain the deep roots of our testimonies in eternal families and in the atonement of Jesus Christ. We understand that both Heavenly Father and Jesus Christ are bearing the burden of this trial with us and we are grateful for the feelings of peace and comfort that the Spirit has provided us here.


Almostgreat said...

Thank you so much for the regular updates!! I really feel "half a world away" when stuff like this happens! But I will be at mom and dad's house starting this sunday, hopefully I will get a chance to come and see you guys! I have a friend here who had a relative that just went through a similar situation, she told me to have you check out www.nowilaymedowntosleep.org "Offering gentle and beautiful photography services in a compassionate and sensitive manner is the heart of this organization. The soft, gentle heirloom photographs of these beautiful babies are an important part of the healing process. They allow families to honor and cherish their babies, and share the spirits of their lives." Anyway, if there is anything I can do to help out while I am in the states, let me know! I'll drop everything (like I have anything to drop) and come running!! I love you guys!

Jeanne said...

Clara and Jonny, I want you guys to know what an inspiration you are to me right now. I have faced times when my children were very sick or in the hospital and I don't think any of it could be as tough as what you are facing. I send you all my love. The day after Josephine was born I was in the Temple and had such a peaceful feeling about her. You truly are blessed to be her parents. I too think she looks like her older sister. You have our most tender thoughts and prayers

Lorihere said...

Jon and Clara,
I feel so blessed to have met you and Josephine. I feel such relief knowing you have your deep Faith in Christ to lead you through this difficult time. I was honored to be there when Miss Josephine was born and I prayed along with Jon when I saw her blue little body. I knew immediately that she was a fighter and I prayed she would live to meet her wonderful parents. I hope you know how blessed Josephine is to have you as parents. I have seen this too many times in my years in nursing and Josephine is very blessed. Know that you are in my thoughts and prayers,
Lori Anderson, RN

We have two choices in life, make it a happy one. said...
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Jennylou's Projects said...

I followed a link from the byrdhouse blog and just wanted to offer sympathy.

We lost our first born son at two days old, though not of the same cause. I can't tell you enough how I treasure the few pictures that we have - so take a ton of pictures while you have the opportunity. And, by all means, contact www.nowilaymedowntosleep.org . We found out about that organization too late, unfortunately.

My best to you during this bittersweet time.

Marylois said...

She is a sweet little angel. My seminary class has been praying for your whole family as well.

Cathy said...


Thank you for keeping us informed. You are simply amazing and have been such an inspiration to me. You and your family have been in my prayers constantly. Just so you know, many of us have said that we want to give you sick days so that you can stay home with Josephine. Someone may have already looked into what we need to do - but whatever the district will allow us to do, many people want to help out. If you need anything done here at school - please let me know. But my advice to you is FORGET this place and concentrate solely on your family and that precious little girl. Don't forget to take care of yourself also. Cathy

Connie G. said...

Hi Clara,

I hope you are home and doing very well. I shared your blog with Cary who in turn shared it with a very well-respected nun who used to be the dean at the college where he teaches. I am sharing her response. As I am sure you know, prayers are being offered up from all over the country and from many different faiths. The love that people can share in a time of need is incredible. Here is the nun's response:


I sent the link to Clara’s blog to Sr. Isabel (our former dean and now Director of Mission Effectiveness). Here’s what she wrote back. Feel free to pass along to Clara if you would like. She might like to know that there’s a nun (maybe more than one!) in San Antonio praying for her and her family.


From: Ball, Sr. Isabel
Sent: Friday, October 31, 2008 9:52 AM
To: Guffey, Cary Alan
Subject: RE: Amanda's Friend Clara

I am inspired and will pray that their faith continues along the peaceful road. I guess I pray for that because I could not experience something like this so completely as Clara and James appear to do so. I could accept the inevitable loss, but the actual loss would be deeply sorrowful for me, though peaceful. God bless them and all their family.

Sister Isabel Ball
Director of Mission Effectiveness
Our Lady of the Lake University
411 Southwest. 24th Street
San Antonio, TX 78207-4689

Live in Jesus Christ and He will live in you and you will produce good results. -Bl. John Martin Moye

Love you,

robyn said...

Wow, Josephine is a beautiful little girl. You were definately blessed. I just wanted to let you know that if you need anything please let me know. I will be forever keeping you in my thoughts and prayers.
Robyn Spilde, Greg and Christopher's mom (from Nicki's)

robyn said...
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