Monday, October 18, 2010

Sweet Lily-pie


Lily wasn't interested in the hard work of latching today, but she downed her bottle, so we are happy. I am working hard to meet her nutritional needs which are heightened due to the stress on her body and being on oxygen, so we will be supplementing with formula and hopefully we will be able to stick to bottles and not do a tube at this point.
Lily also had an echo cardiogram today. She does have an ASD, VSD and a PDA which hasn't closed at this point. Due to these findings we have stopped weaning her oxygen to help relax her vessels so perhaps the PDA will close on it's own. Currently it is causing pulmonary hypertension which was the health condition Charlotte had that we were so hopeful Lily would be able to avoid. However we have caught it very early and we can take measures to help keep it from progressing.
Thank you so much for continuing to follow us on this crazy journey. With Charlotte we planned the worst and had incredible joy when unexpectedly she did well and came home. This time, although we tried to deny it, we really expected Lily to be the picture of trisomy health and instead we are visiting her in the NICU. However we asked for another challenge, we asked for another hard gift, and I suppose we shouldn't be surprised we aren't being asked to repeat what we've already been through.
Day 2 after a c-section tends to be the worst pain-wise, so I'm looking forward to feeling even better--physically, mentally and spiritually tomorrow.

16 comments:

The Snell Family said...

Praying for you all. I missed the big anouncement yesterday since I am internet free at home. please let me know if you need some cookies, always willing to bake for you !!!

Chelsea and Spencer said...

She is so adorable. Your entire SOFT family is praying for you. Let us know if you need anything.

MFA Mama said...

Sorry to hear about the heart stuff and the PH; she sure is cute though :)

Anonymous said...

Georgeous baby--gorgeous Mama. Love seeing Lily looking up at your beautiful long eye lashes, perfect nose and perfect mouth. No wonder your girls are all so beautiful. I'd like to look that good right now let alone two days post surgery. You're beautiful, Erin. Love, Sharon

Anonymous said...

How fun to see all her beautiful hair and eyes open! Hooray for Lily! You both look beautiful.

xoxoCarolyn H.

Becky said...

I see SO much Ella in her. She's BEAUTIFUL! Praying your pain gets better. Thanks for the updates.

Anonymous said...

Thinking of you and your family and am in awe of how strong you all are. Keep it up!

TMI Tara said...

Oh Erin she is just beautiful & stunning. I am checking in as often as I can and you are constantly in my prayers. I'm so grateful you have felt the presence of angels and hope you continue to do so. Sending much love. xoxo

Lacey said...

Still as beatiful as ever! Continued prayers coming your way!

paige said...

you don't know me -
& i'm really having trouble putting into words the beauty of this blog - the preciousness of life, the goodness of God... i'm really,really grateful that you have shared your family's story in a public place like this - surely i am not the only one who has been drawn closer to the Author & finisher because of your transparency -
May He continue to give you what you need.

ANewKindOfPerfect said...

Continued prayers for your family. Thank you for sharing Lily with us, she is beautiful!

ch said...

Oh, you pretty little peanut...right in the lap of a mom who knows better than anyone how to love you just right...we're smothering you in prayers and feel so lucky to be falling in love with four of the sweetest peaches I've ever seen...

Anonymous said...

Congratulations on your beautiful, sweet Lily. May God continue to bless you and your sweet family.

Anne M.

Shannon said...

She is so beautiful! The picture of you two together is just awesome.

the Picketts said...

Erin and Zar,

We can't get over how cute little Lily is! She is beautiful! We'll continue to keep you in our thoughts and prayers.
Jeff and Heather

{ Bethany } said...

My heart is aching for you, DANGGIT it just makes me so sad and angry. I wish you were home with all 4 of your girls. I wish it was easier. I wish it was happier.

I will pray for you tonight and all day tomorrow.

~Bethany