The girls have their good days and they have their bad days ...lately we have been in a bad day mode and it's hard to write about those... I even thought about stopping this blog b/c sometimes it's just too much, but I want to write because I want to share this with Liv and Nina one day. The blog is for them.
Jason wants me to focus on the good things happening...well Livia's respiratory continues to get better...Her lungs look the best they have in weeks. She is still on the ventilator and Doc is hopeful to get her off by next week. What we are focusing on now is her feeding issues. She was getting 28ml of milk/formula over 4 hours and then refluxing about half of that for a few feedings. Doc stopped feeds tonight and is just giving her IV fluids until tomorrow morn when she will just get plain milk. The reflux started Sunday night when they added formula(for extra calories) to her feed. She is also getting a visit from the GI specialist tomorrow.
Nina had an EKG today which was normal. She was having a few Apnea and Brady's episodes so Doc just wanted to make sure she was OK which she is. Nina also had a visit from the Physical Therapy lady tonight. It was a good report, she evaluated her muscle flexibility and Nina is great. She is lifting her head and is very active. PT lady will follow Nina's progress weekly until we get the heck out of here! Liv is too sick to get PT yet but soon...
Also tonight we received papers for Nina's first round of immunizations. This may sound weird, but I can't wait to sign the papers and have her get the shots...In my mind this means that she is going to make it and come home one day. Again Liv is too sick to be talking about shots, but soon...
2 comments:
Judith & Jason,
Thank you very much for updating us with how the girls are doing. I check every day hoping that you'll be able to post good news :)
I can't imagine what you two are going through with the NICU roller coaster and not having the girls home. I'm sure I'm not alone when I say that if there was anything I could do to help relieve some of your daily stress and bring those girls home to you, I would.
Just remember that we're thinking about the two of you and the girls all the time and can't wait until the day when you don't have a chance to update the blog because the girls are keeping you busy with feedings and diaper changes and your free moments are spent getting some sleep :)
Hang in there and I'll leave you with the words of a very bright fish (Dory from Finding Nemo):
Dory: When life gets you down do you wanna know what you've gotta do?
Marlin: No I don't wanna know.
Dory: [singing] Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim.
Jason is a wise man! The blog is definitely for Nina and Liv but it's also so important for so many different reasons. So many of your family and friends are using this to keep in touch with you and offer support. And, while it probably doesn't feel like it when you're actually updating it, just writing it all down at the end of each day, the good and the bad, can in some way let you focus on the next day - kind of a move forward instead of look behind. You don't even need to go into major details or the specifics.
If you want the girls to have a record of their days in the NICU, I think that they're going to love your funny comments, your dreams of bringing them home, even your random thoughts. As stressful as it is, your girls will be able to feel how much you guys love them and want them to come home through everything you're writing. Since you can't communicate that to them now, the blog will definitely be a way for them to understand it later. (They also get to read all of these crazy posts from people they don't know!)
OK, that's a long post from this crazy person. Love you guys - will be giving extra prayers for Livia to get off that vent and hope the GI specialist can suggest something to help the reflux!
Sheryl, Eric and Erin
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