Aug 31, 2008

Girly Mees



My little darlin is holding strong. She has had a rough couple days. Her finger tips are purple, she is breathing really fast, and she is really uncomfortable. I am pretty sure her stomach hurts due to the lack of profusion to her stomach. She is still tolerating her feeds which is more than the doctors expect from her. For some reason she spikes a fever every day. Her heart rate is continually in the 200's- mostly when she is really mad. She is still on C-Pap, but is tolerating it less so they leave her off. I never mentioned this before but her central line came out (double lumen)- and they had to re-tunnel it under her skin. Her kidney function or BUN level was at 53- which if you are like me and don't know much about BUNS- it is really high for an infant. She should be in the single digits. They have her on a continual morphine drip to help with her discomfort. Some times this is not enough and she still has to have bolus doses to help her sleep. Her liver is also very large due to all of the heart medications. She is currently on four heart medications along with a bunch of other meds that help maintain her little body.

In summary- we're not doing so hot. I keep having dreams that she receives her new heart. I have been contacted by other heart mommies and I am so grateful for the support. Some days I feel like I am being tortured (watching her go through all of this), but most days I am just grateful to be here and to be her mom.

On a lighter note-here is a pic of her with a little cowgirl belt given to her by her papa.

21 comments:

Brittany Osborn said...

Sheesh Mimi. I'm so sorry. I can't imagine watching her go through this. I get upset when little Libby cries for a ten minutes and I can't figure out what's wrong. I'll continue to pray and check this every day.

Brittany Osborn said...

By the way the pic is too cute. Her little belt. :)

jayna said...

You guys are doing so well, all things considered. I'm glad you've met some other parents in the same boat for a good support system. Always you are in our prayers, and we hope for a miracle for your sweet girl.

Katie said...

Praying for that transplant to come soon...I'm sorry for what this puts you through. These little ones are worth every bit of it, and you have such a pretty girl and a tough little fighter too. I love her belt buckle (I'm a cowgirl myself and cherish my ranching and rodeo roots!) so seeing her in that darling belt just made my day. What a sweet gift. Hang in there and know that we're sending good thoughts and many prayers your way.
Love,
Katie & Maddie (and family)

Talia said...

You are so strong Mimi. Your little girl is such a fighter and I will continue to pray your angel gets a heart.

Sheri said...

Meems - wow. I wish I could do more for you. My babysitters are going to back to school and I won't be able to come up with the 2 little ones. I am planning on doing fun stuff with Ryan since all the kids will be in school - I'll call and see about taking Jensen and Ellie with us sometimes (parks, NW Trek, that sort of thing!) You are in our daily prayers!!! Love ya lots!!

eRiCa said...

hand in there...we're continually praying for you guys.

Rebecca said...

What a powerless situation. I am always amazed at how much she's going through and what a great outlook you maintain, Meem. You are the right mom for this little one. She's got to be due for that new heart, I know it. I'm so glad that you can be there with her supporting and holding and soothing. It's such a huge responsibility.

Rachel said...

Wow Meem! You are amazing! I can't even imagine the torture you are going through and I wish I could help ease your burden. But I have to believe a new heart is coming soon and Mia will be feeling much better and at home playing with her big bro and sis soon. I am so sorry for this torturous road. We are praying for you two.

Erin said...

Oh my goodness Meems! You are so strong and I can't imagine the helpless feeling you must have. I continue to pray for Mia and her new heart. (And aslo for you, John and the kids.) I wish there was something I could do to make your burden a little lighter. Mia is a darling lil cowgirl, and is such a fighter. Keep fighting baby girl, and hang in there Mimi! We continue to pray for her transplant to happen soon.

Bown Bloggity Blog said...

Mim, we are praying for you. We are agonizing with you. I pray for your peace and comfort in this time. Keep walking through this fog - even though it may seem impossible. Our fervor is increasing to pray down a miracle for your little daughter. Love you so much.

anniewalkfam said...

Oh Mimi, I cry just thinking about what you are going through. I wish I could take it all away for both of you. You know you are all constantly in our prayers and I added you both to the temple prayer roll. I love you both so much. You are such a wonderful strong mommy and Mia is such a fighter. Before long this will all be a memory and you'll be at home taking pictures of Mia every 5 minutes! :)

Yergensen Family said...

You are one touhg cookie! Now we all know where Mia gets it from! My prayers are with you!

Jane Anne said...

Mimi- not sure if you remember me or not from MOPS. Anyway, I just want you to know that I am praying for Mia, for you and your family.

The Eggett Family said...

She is one tough little girl, hanging on so strong!!!
I'm sorry for your pain Mimi, you are incredible, surely her heart will come soon. Don't lose hope!! I'm sure those dreams are a way for Heavenly Father to tell you to Hang on and her heart is coming soon.

Sarah said...

Hang in there, Mimi. I can't even imagine having to watch that as a mommy, you are amazing. We are praying for your sweet little Mia, and your family. We love you guys. And I also love Mia's belt, love it :)

Dan and Angela Keane said...

You guys have never met me, I received your blog from a friend who is a cousin of your friend Jaime....now that is not complicated! Anyway, we have walked a very similar journey to yours...our daughter Morgan, www.caringbridge.org/ca/morganfaith was born with a series of very rare and complicated heart defects...she has had such a long and amazing journey a rollercoaster like no other I have ever known. I held her in my arms many times lifeless and having seconds to make a decision if we wanted to keep moving forward...we always did, relying on our Faith and courage to guide us through. I am so glad we did, yesterday she started kindergarten!! We were told at her birth she had a 5% chance to survive to age 5--she's thriving!
Congrats on your sweet baby girl! She is beautiful!
Keep your Faith, rely on your friends and family for help, and always keep each other close!

Jen said...

Mimi,

I've been checking in to see how you all are doing. Hang in there. You're doing great. I have been awed and amazed watching you (from afar) doing this with such grace and strength.

Love,
Jen (Zoe's mom)

tyalpabr said...

Mimi -

You are so amazing!! I can't imagine how hard this is for you all. We are praying for your beautiful little Mia, and your family. Totally love the belt!!

The Smith's said...

Hi Mimi -

My name is Jesse and my son, Luke, was born with a CHD (single ventricle) and I think we share a cardiologist and surgeon! Dr. Stefanelli is our ped. card. and Dr. Cohen has performed 2 of Luke's open heart surgeries at Children's. I was introduced to your blog by Katie Allred (Maddie's mama) and just wanted to say hello and that your family will be in our prayers. I saw in one of your posts that Mia was taken to Good Sam after going into heart failure, so maybe you live in Puyallup too? Please let us know if we can do anything for you ... As hard as it is/was to be in the hospital, we love Children's and are very thankful for it being so close to our home. Mia sounds like such a fighter (go, Mia!) and she is beautiful. I am praying for the day she gets a heart! Take care, and feel free to contact me if you'd like!

Jesse
smithfamilyjourney.blogspot.com

Kirstin said...

I wish I could think of something so eloquently to say to you Mimi, but you amaze me...the strength and determination you and your whole family has. And Mia is truly a blessing and angel from Heaven. Heavenly Father is hearing all the prayers, and though I am sure you are all exhausted in your hearts, minds and souls, He is listening! Mia is so strong. The prayers will keep coming... Just know that so many are praying for your family's well being. I wish I could do something for you, but my every thought and prayer is with your family at this time...