We're trying to stay positive, but I catch myself looking for big strides of progress, and matter of factly – Lyla hasn't made these huge steps. We know that down syndrome babies don’t learn as quickly, and don’t
have quite the same physical resilience as a normal baby. But, the positives are that she’s
not on any life support or medication right now, and her only hurdle is she’s learning to eat. She’ll eat
about 10mL of milk now (up from 5mL last week), but needs about a total of 50
every feeding which gets supplemented through her feeding tube. She doesn't have
quite the stamina she needs because of her heart condition, so we may be coming
home with a feeding tube at some point in the future. I’m realizing now how
difficult the situation is going back and forth to the hospital, but I’m hoping
things will normalize once she has her heart surgery around 3-6 months and
gains the energy she needs to eat.
We’re really looking forward to listening to the LDS General Conference on the internet this weekend. I can always count on finding more inspiration than I can remember during the talks given and I think I need a lot right now. If you haven't ever heard any of these before i would encourage you to listen to the talks on Sunday morning advertised in the banner below - these sessions are my twice a year inspiration to be the best person I can be and to understand the challenges of life.
We're trying to stay positive, but I catch myself looking for big strides of progress, and matter of factly – Lyla hasn't made these huge steps. We know that down syndrome babies don’t learn as quickly, and don’t
have quite the same physical resilience as a normal baby. But, the positives are that she’s
not on any life support or medication right now, and her only hurdle is she’s learning to eat. She’ll eat
about 10mL of milk now (up from 5mL last week), but needs about a total of 50
every feeding which gets supplemented through her feeding tube. She doesn't have
quite the stamina she needs because of her heart condition, so we may be coming
home with a feeding tube at some point in the future. I’m realizing now how
difficult the situation is going back and forth to the hospital, but I’m hoping
things will normalize once she has her heart surgery around 3-6 months and
gains the energy she needs to eat. 
4 comments:
Our thoughts and prayers are with you both and Parker, Mabel, and Lyla-bean. You are both such amazing people, give each other hugs from the Woodlands here in San Diego and know that as we listen to the Prophet speak we are also keeping your family close to our hearts.
well, looks like I spoke too soon. Lyla ate 26 ML this morning, which is more than 1/2 of what she needs! We'll keep our fingers crossed for this afternoons feeding.
Look at how much hair Lyla has! So cute! I didn't realize it before in the other pictures, but she's got some locks! Praying for your whole family. I especially have been remembering you and Sheena as you continue to be the best parents you can be to each one of your kids. God will give you the strength and grace you need. Thanks for the updates! Lots of love - The Littlejohns
i'm in love with little lyla's cheeks in the picture where sheena is burping her:) she's a lucky baby to have come into such a loving home. can't wait to see her again!
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