Dear Friends and Family,
Welcome to our new blog. Some of you may know we had a blog for Z*oe that we periodically updated. Now that L*ily is here too, we expanded to a new name and this blog starts with L*ily's birth. Thanks to my sister, E*mily, for lending me a laptop so that I can give you updates while I am here. And thanks to my parents for the use of their SRL camera while I am here, which is much better than our digital at home. The blog will allow you to check in on our updates as you wish rather than me sending out email updates.
The update on L*ily as of today is that I (Jen) am still boarding at the hospital with L*ily indefinitely until she is feeding well. Indefinitely could mean another week or two - no one knows and it is all up to L*ily. It may be hard to understand why it is taking her so long - don't babies just eat? Mostly because of L*ily's diagnosis of Trisomy 21 (Down's Syndrome), she is working on "organizing" herself and especially her mouth to be able to suck properly. The goal is to send her home on a combination of bottle and breast feeding. Right now she typically begins a feeding with a bottle of breast milk or breast feeding, but she tires easily as she works hard to understand what to do and how to handle all the stimulation, so she finishes each feeding through a tube. She is making progress and is working so hard, but it is slow going. We ask that you pray for all of us during this time - pray for L*ily that she learns quickly how to eat and how to "organize" herself.
Pray for D*ave as he holds down the fort at home, works and takes care of Z*oe. Pray for Z as she misses Mommy so much and does not fully understand why L*ily and I can't be home yet. Pray for both D and I as we work through the emotions and the understanding of this new diagnosis amidst falling in love with L*ily. Lastly, pray for me - for patience and strength as I work with L*ily, obtain new info every day, and live the rather lonely existence of living life in the NICU. Both D*ave and I feel torn between our children as they are in two different places and neither of us can be with both at the same time.
Please scroll down to the end of this blog and read "up" to begin the journey with us. I will update again in a few days.
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Hey there Patrick Family. So nice to have updates and see your beautiful girls. We send you enormous congratulations and so very very much love from your family in Hendrum. We can't wait to meet your new beauty and spend some time with Z. Take care and let us know if you need ANYTHING.
ReplyDeleteJess
So glad you started a blog so we can get updates! Can't wait until the baby shower. Grandma K*athy tells us all about Li*ly and how Zo*e is doing. Prayer vibes are going out to you everyday!
ReplyDeletePraying for all of you that each day will be better than the day before. Glad that you have a blog so that you can update us so that we all know how to pray. Love, Hugs and Prayers
ReplyDeleteLily looks beautiful. I will send her some of my Type A "organized" energy. She will figure it out. You will get to go home. Zoe will not remember this in a few months. In the meantime, hang in there. - Jamie O.
ReplyDeleteThinking of you and praying for you. Hugs
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