Sunday, October 17, 2010

One more Birthday Post




Today was not the sweet sacred day we had hoped for and had shared with Charlotte years ago. Lily spent the day in the NICU with dad by her side, and I spent it itching in bed and decidedly out of it. In fact I am now blogging 20 minutes after taking a sleeping pill so I only have moments of lucidity left.
I was able to pump for her and get out of bed and take a wheelchair ride down to hold her for a few precious minutes. She doesn't look like Charlotte, but there are similar characteristics--I see mischievous pointed eyebrows coming in and although I haven't really seen them in person I hear her chubby little hands bring back sweet memories. Lily had a bath in the NICU and spent her day under the warmer. She is having oxygen forced through her nose via high flow nasal cannula and was still satting low for most of the day.
Our families came up and I was able to see my girls whom I am so grateful for. Ella gave us loves and kisses and ate most of dad's and grandpa's hamburgers. Ava demanded to be held and gave our fingers a squeeze. Zar spent time shuttling different friends and family members to the NICU for a visit.
After one visit this evening he reported that her oxygen had been increased from 34% to 38% and then after the following visit that it was now up to 50% and she still wasn't doing well. We quickly arranged for Zar's brother Weston and his wife Steph to take our girls home to our house where they sleep best so we could stay here and have a "discussion" in the next two hours with the staff about what to do next. We talked about wanting to let my sister Allison see Lily as she jumped in her car today and drove 7 hours with twin babies because she needed to be here. But we didn't want to prolong suffering for Lily or for ourselves. When it's time, it's time. We prayed and decided to get an hour or so of rest before the big decisions came. We are still saying No to intubation.
We woke up at 10:30 with still no word from the NICU team, so Zar went down to check on her. Lily was down to 24% on her oxygen need and was sucking happily on a binky. They have plenty of milk to feed her tonight thanks to my stellar skills and Ava, who provided the crying baby noises which kicked the milk makers into high gear before it was really time. So Zar went home to let Steph and West go home, and I was given an ambien and a chance to pee on my own.
It has been a discouraging day. We are scared and still don't know what to do, what the next step will be. We are trying hard to place it all in God's hands, but sometimes it feels like He is giving it right back saying "No, this one's all you." I am hoping that Joy cometh in the morning. I want to see her eyes, I want to look at her hands, I don't want to be in pain but I don't want to be so groggy. I'm scared, I want to go home, I really need angels standing by tonight. There are so many of you out there, throw me a prayer, not that Lily will be miraculously healed or taken quickly from us, but that we can endure what is right for Lily. This is her turn and I need to stop pushing and just let her be what she needs to be.

15 comments:

Stefanie Miller said...

Bless you, Erin! Blessings to you and Zar that you will be sustained to experience whatever lies in store and be at peace, no matter what. What a beautiful little baby. Just beautiful. Thank you for pictures and poignant feelings expressed. You are not alone.

Jessica said...

Congratulations on Lily! She is beautiful and you did a great job getting to this day.
I am thinking about you very often and will be sending prayers for peace, clarity, and comfort as you make decisions for your Lily.
I love you friend.
Jessica

Shannon said...

I am so grateful that she has improved enough that the 3 of you can rest. It really has been a long, hard and gut wrenching day. I am ever amazed by you my friend. When we were talking to zar today I mentioned that I felt completely at a loss of what I could do or say to help you. Even feeling lost about what was best to pray for...and here you are comforting me and reminding me that this is between Lily and the Lord. You always have my support and love- always. And so does each of your beautiful girls- whatever paths or roads they take, or however long they choose to stay.

Anonymous said...

I know you will be able to endure what is right for Lily, and you will do it with peace and God's love. Lily "will declare herself" and you will know. Many, many times I have typed for physicians, "We'll let the baby declare herself."

Here's to a very special 2nd day.I love you all.

Carolyn H.

Lacey said...

Erin, you will do what is right for Lily, just like you did whats right for Charlotte. She will lead you, get some sleep, she is absolutely beautiful!!

Anonymous said...

Lots of love and gratitude for your openhearted willingness to trust and love what's best for Lily.

Linda

ANewKindOfPerfect said...

She is truly beautiful. I pray that she does as the poster above said and "declares herself" to the doctors soon. I pray for peace and strength, regardless of what happens. And in the end, I pray that she starts breathing better and is here for the long haul!

Amanda said...

You guys are amazing! I know that Charlotte is taking care you and definitely is watching over Lily. I know you have difficult decisions ahead but I also know that you will do what's best for Lily. She is beautiful and definitely does have Charlotte's little hands. Hopefully this morning will bring you a bit of clarity. I love you all so much and am in awe of your family every single day. Here's hoping you had a restful night. Love you!

benlm54 said...

Writing from the airport... I hope having Allison and the twins in town brings you at least some small degree of comfort as you endure difficult trials. We have a great deal of love and respect for you guys and you are always in our prayers!
Ben and Allison

TMI Tara said...

I am sending loads of prayers and love your way. I am not envious of your position, but believe that angels ARE near and will help you, no matter what choices you make or direction Lily chooses on her own. Wishing you peace and moments free of pain and full of clarity so you can enjoy your sweet daughter. ((HUGS))

Ann said...

Lilly is so beautiful....

I am grateful you are sharing your journey with us...

keeping your whole family in my prayers.

Love, Ann

Penny said...

lily is beautiful...praying for you all during this time...may God give you wisdom and discernment as you seek Him....

The Family said...

You are amazing and strong. Angles are EVERYWHERE! Everything happens for a reason- cry because you can and kiss that baby as much as you can! She is beautiful! I thought she would look more like Charlotte but she is Lily through and through! Sending loves and kisses your way!

Our Family said...

Erin you are so strong in so many ways! I admire you for the strength that you have to endure these hard trials in your life with openness and faith. I hope tht you will know the Lords will for Lily! Shirlene

Angela said...

Sending love, hugs and prayers your way. I know you will do what is right for Lily because you are an amazing mother and her amazing sister is watching over her from heaven.

Be strong Lily!