Tomorrow we are having a "family meeting" (meeting with Dr, nurse, case manager,social worker to talk about babies) and up until a few hours ago I was happy about the meeting, but I was told these meetings are not the norm and only are held when the babies are sick/have a long road ahead of them.
The meeting is being held on account of mostly Livia...
Livia is a pretty sick kid. At the meeting we will address such issues as why are her bilirubin levels increasing?What does this mean for her in the long run?What about her feeds? Will she continue to feed continuously? for how long? when will you make the bump up to 3 hrs on and 1 off? When will you add formula? What if she cannot tolerate it like a few weeks ago? What about her swelling? What about her stomach distention? How much longer will she be in isolation? Is she still too sick for PT? How long will you keep her on CPAP/cannula before you want to transfer her to another facility? Will she need a tracheotomy ? When will she ever come home? Will she ever be normal? Am I ever going to get to hold my babies at the same time?
WHAT IS THE PLAN?
11 comments:
Wow...lot's of questions. Continue to stay strong for the girls and we'll pray for the most positive answers.
Pete C.
Yes, this is a lot to take in but remember they have to tell you the worse case stuff. You and Jason can take whatever you are handed. You were given 3 beautiful girls. God needed Georgia to go back to him. But you have Livia and Nina and you will be able to hold both of your girls - it just may take more time. Hold on to each other. You have so many people that are with you in spirit- praying for all of you.
Judith and Jason,
We are praying for the four of you and will keep you in our thoughts tomorrow.
Sharon
Jason and Judith,
Whoever posted the "anonymous" message said it well. We are thinking of you all and praying for some positive news from your meeting. You two are strong and your girls are fighters. We are here for you.
All our love,
Chris, Kristin & Owen
Oh, Judith, you have so much to consider. We're sending you, Jason, Nina and Livia thoughts of strength and healing. With some extra fighting strength for sweet Livia.
xo
Betsy, Bruce, Lily and Alice
I will be praying for your family during this meeting. Hopefully, you will get the answers you need.
Kimberly
www.guinnfamilyhome.com
Jud, Jason, Liv and Nina,
We are cheering for you.
Love, Shan and Jer
You family is in my thoughts.
I will keep you in my prayers,It is hard as much as we want to know the truth it is not easy. I also had a preemie and at her NICU we had meetings every few weeks just to give us heads up and communicate. Hope thats the case with you. I love reading your site. It brings back so many memories.
I am on the group with you. I had a 25 weeker who is now almost 2. We were on the vent for 63 days. He had some major complications and we had one of those meetings. And it was a care plan meeting. It wasn't for them to tell me he wasn't going to make it. It was for us to decided how to get him home. I hope that helps. Take your questions, ask questions, tell them you want it bluntly and no sugar coating. Tell them you want it and might cry but want the whole truth. They do have to say worse case but that doesn 't mean its you. It is standard procedure in our NICU to do a meeting like this. Good luck.. let us know
Just remember that your girls are fighting and they really are the only ones that can show us all what they are going to do. We had plenty of these meetings with docs about Ashton and I have to tell you it was never pretty. They told us that if he did survive he would be a vegetable and have a lot of issues and need a ton of care. Well they were right about the care and problems, but one thing they could never predict is how much joy this little guy has brought to our lives! He is VERY happy and determined. He has come so far already and I just look to the future for more positives.
Make sure you ask tons of questions and get the answers from them. We had some docs that would beat around the bush. At the same time, remember that they are NOT always right.
Stay strong...I will be praying for you all...
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