Friday, November 05, 2010

Very Sweet Pictures. And not a lot of info.

mmmm cozy...

Can you believe how different Lily looks from when she was born? She's lost her newborn look and is so gorgeous. Not that she wasn't gorgeous when she was born but WOW she looks grown up.
Lily was much more comfortable today. The lasix and albuterol treatments have helped her breath a lot easier. It was so nice to sit with her while she was wide awake and not struggling.
She finally went back for her heart cath at 3pm. I couldn't believe it when they told me it would take 3 hours, but it did.
Afterwards we sat down with her cardiologist and looked at amazing videos of her little heart and lung vessels. Yes, her PDA is open but not making all that much of a difference. Yes her vessels are slightly smaller than normal but not making all that much of a difference. Yes there is a partial shelf of tissue that isn't making all that much of a difference. Yes she has a VSD and an ASD that aren't making all that much of a difference. But all these added together apparently are making a difference.
The doctor discussed medications with us, the same ones Charlotte was on. And of course oxygen. Once we started asking questions he went into surgery mode, talking about clipping off the PDA and trying to open up that shelf with a balloon which could be done through her side. And then he discussed opening up her chest and doing both of those things and opening up her narrowed vessels and partially closing her ASD which could lead to "normal plumbing." I didn't dare ask if that would mean she wouldn't need oxygen. They couldn't promise that anyway.
The doctor needed to get the final values and such, and then we would have a little more information. There is also a care conference between the cardiologists and surgeons on Wednesday and they want to present her case and discuss with everyone the options and what is reasonable, etc.
In the end obviously it is our decision. It's hard to believe that meds alone will be enough with how bad she was doing yesterday and how much high flow oxygen she is using. I don't want to bring her home to watch her struggle to breath. I am not opposed to doing surgery through a catheter or with balloons and clips--today's procedure was along those lines. I am not comfortable, at this point, with cracking open her chest and putting her through open heart surgery, especially if the results are unclear and she still will be on oxygen. Heart surgery was never an option with Charlotte so we didn't go through this. However, she didn't have an open PDA and had a small VSD which closed on it's own and a small ASD which was actually beneficial to her, so I don't see how doing all this surgically for Lily could make her heart healthier than Charlotte's was.
At this point we will treat with lasix and see how she does the next few days. I will want to hear the differing opinions of the docs after the conference on Wednesday and then hopefully they will help us decide what steps to take. I need to think this through and get my questions ready. It's hard to believe how awful yesterday was, and how last night I thought we might be saying goodbye to her this evening. Things change so fast and I am reminding myself of that fact even as I make plans assuming she will do okay these next few days. We could be right back where we were last night any minute, but at least for now we are able to keep her comfortable. Tonight she is riding the ventilator as she recovers from her procedure, and hopefully as she wakes up she will start taking over her breathing for herself and come off the ventilator without issue. If not, that's a whole new ball game.
Thank you all so much for all your thoughts and comments and prayers! The ride continues...


LindsayAndrew said...

Oh my gosh Erin, that last picture kills me!! What a sweet little squishy baby! She is beautiful! Just like all of your girls! I love the post with Ava doing the plank pose. Killed me! I laughed so hard! Thanks for keeping the posts going.

Mary Courtney said...

When Neal and Alexis told me of the safe arrival of your wonderful gift of Lily, I began to read your blog daily.
I admire. so much,your eloquence and ability at being able to share your Faith, Strength and Love at such a difficult time.
I personally want to thank you for solidifying, even more,my faith in the Lord.I am sure that many others are acquiring the same inspiration from your words.
I constantly look back on my blessed life,(I have lost count of the number of Blessings I have,and give thanks every day!)even though, it too, has been flecked with heartbreak.I knew then ,as I do even moreso now, that God would provide me with the strength to accept His will and continue to move forward. I know that He will always be at my side.
You have a wonderful caring family of which I feel proud and blessed to be part of...I love you all!
You are costantly in my thoughts and prayers.
Give a big hug and kiss to Ella, Ava and Lily.. I send one to Charlotte every day.

Anonymous said...

Thank you so much for current updates and your inspiration to us all. The photos are gorgeous! She is so beautiful.

Please tell the pediatric surgeon that this is my grand niece.

Lovingly, Carolyn H.

ANewKindOfPerfect said...

What a beautiful girl she is! You're right, she looks different already, older and squishy and adorable! :) I hope that she continues to do well while waiting for the doctors opinions to all come together.

Renee said...

She is absolutely beautiful! She always has been such a pretty baby, can't believe how she has grown out of that "new born" look so quickly. What a doll she is. So glad she is doing better and will continue to pray for you all!!

Lacey said...

What a chunky monkey! She looks so big!

Jessica said...

Hi Erin. I'm so sorry I haven't responded in a while. Reading your words tonight remind me so much of when we were right there with our Eva. The ups and downs and impossible decisions.
My heart aches for you and as I pictures of your Lily, I just want to scoop her up and love on her. I wish I could hug you too.
I'm still here and still with you in heart and in prayers.
I am thankful to have found you as a friend in trisomy, in adoption, and in this crazy life.
Love you!

P.S. I am going to share that poem you posted as a note on my FB. I sure would take my babies in any form they are given to me. They are always loved beyond measure.

Monica said...

Oh, those decisions are so hard. They are SO hard. For whatever it's worth, I think you're going about it in just the right way. Your girls are lucky to have you for their mom.

Colleen said...

She is gorgeous! Continually praying for your family.

Becky said...

Decisions. I hate making those decisions. thankfully you are not alone in those decisions. She's a lucky little girl to have such an amazing mother. Praying that the answers will come and come with the peace of making the right decisions. xo

{ Bethany } said...

I love the last picture...what a sweetie pie!