First, thanks to everyone for their kind words about Livia. She was truly the best of us.
Judith, Nina and I will miss her dearly.
When we got to the hospital today we did not get the news we were hoping to hear. Dr. Chang and the care team have decided to hold Nina's feeding for 24 - 48 hours. Her belly has been a little puffy lately and this is being done strictly as a precaution. When we spoke further to Dr. Chang he assured us that her condition raised no red flags but given what has happened in the last 24 hours and 50 days ago to Georgia, the team wants to be over cautious and explore all avenues.
The plan is to hold her feeding for 24 - 48 hours and supplement with TPN, not exactly what we wanted to hear. But Dr. Chang explained the risks associated with TPN, which has more negative effects when used for longer periods. It is a necessary evil because despite the risks, TPN will give Nina what she needs until the feeds resume.
On Tuesday or Wednesday, Nina will have a lower GI exam with a barium enema: http://en.wikipedia.org/wiki/Barium_enema
The enema will track how her intestines are processing the contents of her stomach, i.e. food. This will be followed a few days later by an upper GI exam, sorry no details on this as of yet. Hopefully they will find nothing and attribute the growth in her belly to what we have been calling her Buddha Belly but if something is found we will hopefully have time to correct.
On the positive front, she is not acting sick and shows no signs of any other stress. She is breathing great, pooping and peeing and is very vigorous. Please say prayers for Nina.
13 comments:
Jason, Judith, and Nina:
We are so sorry for your loss of Livia May. Our thoughts and prayers are with you during this difficult time. We will keep you in our prayers and we will say extra special prayers for Nina to keep strong and fight. We love you guys! Regina and Jeff
Jason & Judith;
All our thoughts and prayers are coming your way! We are all cheering for Nina.
God Bless all of you,
Betsy
Jason & Judith,
I am so sad to be reading this about Livia. She was such a brave little girl. My heart goes out to both of you and I am saying some extra prayers for Nina.
I am so sorry to hear about your loss. I was terrified of NEC. I can't imagine all you have been through. Nina will be in our prayers tonight.
Much love.. preemie mommy
I am so sorry to hear about your precious Livia. Her life will not be forgotten as she touched us all.
You are not only dealing with the immense grief of losing Livia and Georgia, but are trying to stay strong and positive for Nina- that is incredibly hard work - you both are amazing. My thoughts and prayers are with you every day.
I am now wondering at this point whether you should consider a transfer to CHOP for Nina. I know that was going to be the plan for Livia before she died and after reading some of the comments from others, this may be the right move as they are THE best and have the expertise you may need in the weeks to come.
Livia and Georgia have touched us deeply. We hope for health and healing for you two and little Nina.
Love,
Bill, Toni, and Gracie
Dear Judith & Jason,
We are to sorry about Livia. Stay strong. We are praying for Nina. Love, Frank & Karen
We really just do not know what to say during this very difficult time. We do know that you both are wonderful parents and are sure Livia certainly knew how much you love her. As every day we will be thinking of you and praying for you all.
Nina - we send extra special prayers to you and your mommy & daddy.
Amy, Larry and Zachary Gelb
My thoughts and prayers are with you. As I understand what you are going through oh too well..
My son had NEC twice while in the NICU for his 150 day stay.. As I read your story it touches home in so many ways..
Hang in there.. and I am sending you some positive energy..
Hugs to you all
Jessica
We are so sorry to hear about Livia May. We are thinking of you, Jason and little Nina.
We love you,
Stacey, Aaron and Evan
I am so sorry to hear about the loss of your sweet little Livia. You will all continue to be in our thoughts and prayers.
Trisha
You are always in my thoughts and prayers.
Judith, Jason, and Nina,
I am so sorry to hear about the loss of Livia. Your family is in my thoughts and prayers.
Vicki Russell (Karen Ciprero's sister)
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