Wednesday, August 11, 2010

Lily's journey to a stronger heart

And so the journey begins (a little sooner than we expected)........

So many of you have been so sweet offering love, prayer, and support all day I wanted to quickly let you all know what is going on as of right now.

Lily woke up this morning with no fever, but was still refusing to eat. We got to the clinic for our appointment at 10am as soon as they weighed her and saw she had lost weight from yesterday the doctor decided to admit her.

We are on the unit where I work so if we have to be admitted, this makes it a lot better - I work with an amazing group of people.

Since being in the hospital they have drawn blood work and placed an IV - our nurse, Shelly was fantastic she did it all in one stick, and there were a LOT of labs to send. When the results came back some of them were very concerning, so one of the labs was drawn again and the repeat looked much better.

We met with one of the nutritionist and it was decided Lily was at very high risk for refeeding syndrome. This is something that can happen when you increase a malnourished persons feeds to quickly. Because of this they said she needed to feed with an NG tube and nothing by mouth for right now. She is getting feeds continuously and they are increasing the rate very slowly. She will have to get blood work done again in 6 hrs.

Due to the feeding issues we could be here for an extended time.

Lily had a fever, but we didn't give any medicine and it went away by itself.

Lily's oxygen saturation's (this is the level of oxygen in the blood normal is above 92-100%) has been anywhere from 39 - 70. When she cries it really drops low, now I know why she looked so blue at times in China. This is her norm so it is nothing we have to worry about - crazy.

She is still very irritable, but with all that she has been through today who can blame her. I placed her in her crib and she started hitting her head with her hand - a reaction she had stopped doing about a week ago. It is hard to see her regress, but I know it is just temporary and it is her way to deal with stress. Her IV is in the hard that she normally grabs her ear with so this was making her pretty mad, but she soon discovered she could use the other hand and grab the other ear - smart girl :).

Chris is handling things at home - his mom bought dinner over tonight and my mom is feeding us tomorrow. We feel very loved and cared about. It's hard to be away from the boys so soon after returning but they are being amazing and handling things really well - I am so proud of them. Mia came and visited Lily and was very interested in all the tubes and wanted to know what everything was for. She was very loving towards her sister she is such a sweet girl - she melts my heart.

I am doing good - I know we are where we need to be, and as hard as it is seeing Lily go through all of this I know it will ultimately make her stronger. We know God has her in His hands and we are resting in that.

Thank you again for all your words of love and support - it really helped.

7 comments:

Julie said...

Rachel, I found your blog when you were preparing to go to China. My son just underwent open-heart surgery this summer. His case was no where near as critical as Lily's and he's much older. But from one mother of a heart baby to another, I just wanted you to know that I'm praying for Lily and for your family.

W,M,M,A Davis said...

Just starting to read our travel group's blogs... Wow... Lily and your family are in our prayers!
The Davis family-Warren, Merrie, Miah, and Ami

Gary and Michelle said...

Praying here, that Lily will heal and that the Lord will sustain you all during these difficult days.

Michelle

Antoinette said...

Constantly in my thoughts... I wish Lily a speedy healing.

Jenn said...

Rachel-
I am praying for you daily. We ended up in the hospital with OHS a week after coming home in 2008, so I know how hard it is to be away from the other kids after already being gone for 2 weeks. We were unsure about our daughters heart condition as her referral was a bit vague (VSD/ASD) she ended up being aa single ventricle girl. I know you have heard this a million times but Lily is so lucky to have a wonderful momma like you :) Someone who will look after her and care for her in such a loving way. I know that she will continue to recover from this little setback and will be home running around with her sister and brothers soon. Please keep us posted as things progress. Praying for you all.
<><
Jenn
www.ourjourneytoabbygrace07.blogspot.com

Kathy said...

Hi. I am a fellow AWAA family and wanted you to know we are praying for lilly's healing and His hand upon your family.
Kathy

Chelle said...

Rachel, I found your blog through a link on another blog I just happened to find. I was reading about Lily and realized that I know you. It truly is a small world. We are the Thompson's, one of the families that met you in Chicago on our way to China to get our daughter Kimberly. The other family is the Uland's. We also saw you at the Consulate on the day we took the oath. Just wanted to let you know that your family, especially Lily, are in our prayers. Praying for strength for you all and comfort that can only come from God. I'm on facebook if you ever need to talk.

God bless you,
Chelle Thompson