Oct 10, 2008

Mia is 3 months old


Well the strongest little baby on the planet turned 3 months old. She has been such a trooper the last couple weeks. This last week has been kind of a roller coaster.

Mia continues to spike a fever twice every day. The nurses culture her over and over, but nothing ever turns up positive. The last couple days ID (infections disease) has been running all sorts of labs. Mia had her first CT scan, which came back clean. They did discover however that she has blood clots in her right leg. This was caused by the two different caths she had the first weeks of life.

Three days ago they did an ulrasound on her head to determine if she had a stroke. What??? yes, I know! I pretty much felt the tissue in my own heart ripping when they mentioned it. Mia had been so lifeless the two days prior, and she usually has so much fight in her. I was really concerned because her spunk was gone. They gave her some narcan, and she woke up more after that. Apparently her kidneys are having a difficult time with all of the medications that help sedate her. All of her tests for viruses and infections came back negative. They have no idea why she has this continual fever. I guess sometimes babies with severe heart failure just have fevers. So for now, they are just blaming the failing heart. One of the transplant cardiologists is concerned because if they are missing something and they transplant her, it would be very detrimental due to the overloading of immuno-suppressants given post transplant.

On a lighter note- she now has a cute little squeal she does instead of cry. Because she never feels good (high fevers) she gives us little shout outs to let us know. Before she would strait up scream, now she just has a girly squeal.

I have been trying to get her to smile at me. Developmentally she will be behind, but I can't wait for her to look up at me and smile. She will open her mouth up really wide when I play with her, but I don't consider it a smile. She smiles a lot in her sleep (air in the tummy) but nothing due to all of my antics. A big smile is coming soon I can feel it... just like her heart!!

I have a renewed hope and faith for my little one. Yes, this is the most difficult thing I have ever experienced. However, listening to the general authorities speak this weekend during conference, I cannot deny how much it strengthened me. If you are not LDS, or don't even know what that is. Go HERE and listen to all four sessions of this conference. I promise you won't regret it, and it will inspire you to be a better person.

Mia and I will continue to kick it here until that glorious day will come. Where do you think I will be when I get the news?? I think about this question all too often. Will I be eating? holding her? at home? Where??? What will they say when they tell me... "Mimi, we got a call?" "Mimi, there is an offer?" What? I have created pretty much every scenario in my head, but would love to hear where you think I will be, and how they will break the news to me.

Here are some pics of Little Mees- I haven't posted any pics post head shave. I'm still not over it, but maybe posting the pics will get me one step closer ;-)


23 comments:

anniewalkfam said...

Shaved and all she is gorgeous and had one not seen her hair previously they probably wouldn't be able to tell it was shaved! You know it will happen when you least expect it...but I think soon too! You are so strong and I'm glad you enjoyed conf. During a lot of the talks I thought of you...especially during Uchtdorf's Infinite Power of hope! You both are so amazing and strong...you will get through this!

anniewalkfam said...

i love the bottom picture by the way! :)

Lauri said...

I'm sure it will be when you are close by so that you will get to give her a BIG hug and kiss. And then you can do the silent happy dance! Or maybe when we bring you cheese soup! I'm so sorry that she hasn't been feeling well but she will get through this too. You know when this is all done and she is home healthy and happy you are going to have one stubborn girl on your hands!!!

Kevin and Andrea said...

Mimi she is just beautiful. Hair does not make or break the deal, she's just beautiful no matter what :)
I think Mia is wanting me to send her some bows.... hmmm think I will! Tell her they are coming :)

Shila said...

Mimi, today is the first day that I have just broken down. I can hardly stand that you both are there. Your post was amazing, and it was so great to hear your testamony, it truly strengthened mine today. Your baby is beautiful and it is inspiring to me to see the faith that is so strong in your soul.

Cindy said...

Oh Mimi- she's so precious! I remember the first time I saw Gavin with the scar down his chest and thought- they made something perfect so imperfect. Even though I know they fixed what was wrong in the first place, they still cut into my beautiful boy's chest- creating a scar that will hold so many memories for me every time I look at it. Mia's hair will grow back, but they still took away that perfect little part of her- and you want it back. I am so glad that you posted those beautiful pictures.
Anyway, I think you will be doing your dance in the elevator when the pager goes off- or perhaps in the shower. As soon as I step into the shower, all heck breaks loose: phone ringing, doorbell ringing, kids fighting- you name it! I pray that the pager goes off TODAY! Hang in there!!!!

Rebecca said...

I love this post. You actually got me all teared up, I think it was the music coupled with the last two pics, and knowing that you are feeling more fight in you...and because I hate that she hasn't smiled yet, that she is three months old and still waiting, and all the other stuff that I don't need to repeat, but it's all a mix of joy that she's alive and coming home someday, and sorrow that she's waiting still and so fragile. Anyway, happy little three month birthday Mia.

Jen said...

Mimi,

I'm so glad to see you are uplifted by hope. You've posted about loving weddings I'm guessing it's because of all the hope and love they symbolize. I thought I'd share our story of "the call" in hopes that it gives you the same lift.

We had just come home from the hospital about 2 weeks prior. It was a Wednesday and we were in for clinic that day. Everyone was excited because she had grown making it more likely she would be eligible for available hearts. We were at the hospital for several hours and after picking up her medications I almost went back to clinic and asked them if they were sure I should go home or if they had some news for me. I just had that feeling. We went home and just after dinner the phone rang. I was rocking Zoe in a chair and when I glanced at the caller id everything became very surreal. The last name on the caller id was Morgan and I remember thinking "who do I know with that last name?". And then my pager went off and it suddenly clicked...Kelli Morgan...the transplant coordinator. She told me it was time and that we needed to be there in a few hours to get her prepped for surgery. I can't describe the feeling I had when it was Kelli on that phone. I will say your emotions run the full range. Although I was elated while on the phone as soon as I hung up I began sobbing because I knew someone's baby had just died (this isn't the part to cheer you up-but it's the truth). The rest of the evening was a jumble of thankfulness, excitement, anxiety and anticipation.

Love to Mia

Jen said...

Mimi,

I'm so glad to see you are uplifted by hope. You've posted about loving weddings I'm guessing it's because of all the hope and love they symbolize. I thought I'd share our story of "the call" in hopes that it gives you the same lift.

We had just come home from the hospital about 2 weeks prior. It was a Wednesday and we were in for clinic that day. Everyone was excited because she had grown making it more likely she would be eligible for available hearts. We were at the hospital for several hours and after picking up her medications I almost went back to clinic and asked them if they were sure I should go home or if they had some news for me. I just had that feeling. We went home and just after dinner the phone rang. I was rocking Zoe in a chair and when I glanced at the caller id everything became very surreal. The last name on the caller id was Morgan and I remember thinking "who do I know with that last name?". And then my pager went off and it suddenly clicked...Kelli Morgan...the transplant coordinator. She told me it was time and that we needed to be there in a few hours to get her prepped for surgery. I can't describe the feeling I had when it was Kelli on that phone. I will say your emotions run the full range. Although I was elated while on the phone as soon as I hung up I began sobbing because I knew someone's baby had just died (this isn't the part to cheer you up-but it's the truth). The rest of the evening was a jumble of thankfulness, excitement, anxiety and anticipation.

Love to Mia

Katie said...

Mimi,
You are so awesome. I admire your strength, sense of humor and FAITH so much. I check on you about 10x a day...we are all anxiously waiting for Mia's big day to come! I think you'll be in that "lovely" long hall, where you lose cell phone reception on the corner, almost rounding the cute display window by the gift shop when your pager goes off!!! It's coming, very soon :) Remember, with great hope comes great faith (something like that, I picked up from the conference!!). Thinking of you lots and give hugs to sweet little Mia. She is absolutely gorgeous, Mimi. Hang in there and I'll call soon to chat!
Love,
Katie

Brittany Osborn said...

Thanks for posting pics. She is so sweet. In the pics you can barely tell they shaved her head. Give her loves and kisses from me!

The Eggett Family said...

Are those pictures after her head is shaved? I seriously can't even tell. She is so beautiful, and looks so oerfect abd peaceful. What a trooper that girl is. She's gone through more in her 1st 3 months, than most of us will in our whole lives.

I'm so glad that conference gave you a renewed hope. There were so many talks on being of good cheer even through our trials.

I think you will be sleeping when the call comes ~ but really I have no idea. I just Hope and Pray it Comes VERY SOON!!!

Love you Meems - You are an inspiration to me and so many others. Give Mia a big hug and kiss for me, I just love that little girl. She's so Tough!!!

Erin said...

I think you will be at the hospital and they are going to call and say "Mimi, we have a match!" Wow! What an emotional moment that will be. She is so beautiful! I thought a lot about you during conference and hoped that you were feeling the same sense of cheer and hopefulness as I was. It is going to be SOON, I think just days away....I hope and pray! Love you!

Keep fighting little Mia!

Holen Family said...

She is so beautiful! What a little sweetheart. Conference had very powerful messages. I am also reading Elder Holland's book "Broken Things to Mend" It has a wonderful message of hope, love and compassion.
My guess were you will be when you get the message is while you are asleep. The phone will ring and they will say "it's coming!" I cannot imagine a better wake up call!
I love the comment you left on my blog. I cannot believe everything you remember. I remember a few quirks about you also! I will make a list and post another comment. Oh, and the tornado thing- you can just use duct tape (works the same)
A couple of days ago, I checked your blog in hope of a heart. I started crying when I saw she was in the hospital. I cannot believe how strong you are. It's amazing! However, I understand the spirit is with you at all times.

Princess Pookie said...

What are you talking about? Unevenly shaved heads are the "in" thing right now!(The post about that had me completely choked me up by the way! You're a survivor Meem!) Just cover it with a big pink bow and no one will even notice. I'm pretty sure you'll be at Pottery Barn admiring that red phone when the page comes. And you'll be so excited that you'll try to start making calls on it! Either there or in the "love locker".:)

Talia said...

Mimi,
Thank you so much for sharing an update on precious Mia. You have tremendous strength and faith and I know one day soon, your little girl will get her heart. Keep hanging in there and if you need anything from Alaska let me know!

Jennifer said...

She is such a ridiculously gorgeous baby! Seriously!

The Coatney's said...

oh, little mees. she is seriously so beautiful. i love her. and you. and her little foot. so precious. i miss you.

babydrew said...

Mimi,

You are such an amazing person. Your courage and strength along with little Mia's are an inspiration to us all. We think and pray about you often. Please let us know if there is anything we can do for you.

Love,

Taw, Stacey, Ali, Lexi, and Baby Drew

Hello strong bitches! said...
This comment has been removed by the author.
Hello strong bitches! said...

Hi Mimi!

It's Leslie Brooks. I was wondering if you were going to be at the hospital tomorrow, because I would love to come by and visit you! My church gets over at noon, so let me know if you'd like to have a visitor. OR I would be more than happy to sit with Mia for the evening if you want to go home and have dinner with your family. I would love to help out if you need a break, just leave me a message on my blog!

Carol said...

When you get the news about Mia's new heart, you'll be blogging! You'll have to write, "just a minute everyone, my pager is beeping!" Then you'll freak out and type like this: zxcvawep zdfvj"SDghja[wpe for a few seconds until you calm down. Then you'll run off without hitting "publish" and you'll remember a few seconds later and come back and do it. Then we'll all pray really hard. Well, we'll KEEP praying really hard. Love you!

Rachel said...

Wow...what a post. You just touched all the hearts of the hundreds of people who read your post daily. And sharing conference with them and your testimony was really powerful. You renewed inner power was definitely felt. You are the strongest woman I know. We need to come up with a super hero name for you!! So...I think you will be eating lunch with crazy beak or in the bathroom, or perhaps rocking Mees in the rocking chair. Give her a big smoocher from us!