Things you may not know...

1.  Lauren likes to grunt and whinny just like a horse.  Especially as she is sleeping and is attempting to give a great big stretch or wake up.  Perhaps she will be the next horse whisperer.

2.  She burps loud.  I mean REAL loud.  Like a 14 year old boy trying to impress his buddies.  Let's hope she grows out of this one!

3.  This one's funny, I know it shouldn't be, but it is to me.  When she goes poo or passes gas her bag inflates and it can sometimes be heard across the room.  Giggle, giggle.  I remember when the girls came to stay with me at the hospital for a few days and Lauren was passing lots of gas and I said, "Look who's mommy's tooter pooter."  Well, you can imagine the girls thought it was so funny and thought that should be her nickname.  "No girls we can not nickname your baby sister after poo...sorry."  

4.  Going with the nickname, we decided on "little butterfly" since that's what kept popping out of my mouth when I would talk to her.  The girls were very thrilled and convinced that this was the "one."

5.  When she smiles, it melts me.  Totally and completely.  I am afraid that if she continues to smile this way, she will get away with too much as she gets older.  Scary, very scary.  Love, love, love.

Well, I thought this would be nice to share since so many following and reading are either far away or have not yet gotten the chance to meet her, so now you know a little more about my little butterfly!

IV please.

Lauren began the day feeling great. She was handing out smiles like they were free...  It's so sweet to see her when she does this. 

This afternoon she began to feel a little cranky...and didn't eat very well, but pulled through.  She had a visitor, Keisha and Sha (thank you)!

Lauren has always been a difficult stick, so when her IV went out, I began to worry.  Five IV specialists, many sticks, and 5 hours we just got an IV.  She really needs her meds, which are behind and her fluids since she can't eat after midnight due to surgery tomorrow.  Let's pray that the IV stays and works for a while.

Someday people will point at Lauren and say, "You see that girl, now that's the embodiment of strength!"

It was really emotionally exhausting to see her go through all those sticks, knowing she has been through the same thing many many times before in her little life.  Somehow, she perseveres! 

Night all!

Staph epi

 So, they got a spcific germ to grow.  It looks like a staph infection.  It's very common, especially in hospital patients.  The good news is they know which antibiotics does kill it (many can't) and she was already on one of these.

A very loose plan of treatment right now:  Externalize shunt on Monday.  This type of staph infection loves to grown on objects like catheters, which she has going from shunt in brain to heart.  Once blood comes back clean (about a week???) they will re-internalize her shunt, then have one week of post op antibiotics. 

Hopefully this plan works and it doesn't take any longer.  Good news is that Lauren hasn't had a high fever in last 12 hours.  She ate decently this morning, got a bath, and is peacefully resting.  She looks so cute and snuggley right now.  I am sure her sisters would be trying to kiss her like crazy right now if they were here.

For more information on this type of infection I found this link to be helpful-not too much medical lingo:

 Staph epi details and more information

As far as a room, we got one about 11:00pm last night.  We are right next to NICU on same floor in Pod A.  It's a really great set up.  She has a decent nurse to patient ratio and a care partner.  We also have a large room with a bed/couch, bathroom, TV/DVD, fridge, storage...  plus the visiting restrictions and in room eating... is much much better and more convenient.

Bloodstream Infection

Wednesday afternoon Lauren began sleeping quite a bit.  It's so weird how a parent suddenly becomes obsessed with the mount of sleep her baby is getting.  Watching her so closely and while holding her taking that little feel to her head, making sure it's not to full...  it's such a constant worry, but the joy of having a baby like Lauren overcomes any of these differences.

Thursday morning about 2:30 Lauren woke up crying and continued to do so for hours and hours.  She wouldn't nurse and I barely got some milk in her through a bottle.  she has such an amazing temperament that I knew something was up, small or big-my little one had something wrong.  She began to run a fever later that morning and I took her to her doctor.  They checked her ears, throat, breathing, and urine.  They all came back clean and clear.  At this point we decided to call neuro, and they advised us to come on to Nashville. 

At 3:00 yesterday we were admitted into the hospital er at Vanderbilt.  They ran a bunch of blood work, did an mri, took x-rays, and tapped her shunt.  It appears that Lauren's spinal fluid is not infected, however her blood is.  Because her shunt goes to her heart where the blood pumps they are going to externalize her shunt until the infection is gone.  They really don't want the infection to spread to her spinal fluid.  They will then re-internalize it and will have at least a week of post op antibiotics.

With an external drain, they must remain flat and level with the drain.  She has been on two before, so we are aware of the challenges they present.  I fear that Lauren is used to being up and mobile and now being flat... most of the time may be frustrating.

We are just going to have to take this one day at a time.  The good news out of all of this is that her cultures are actually growing a germ; where in the past they didn't and they had to generalize her treatment.  Knowing which specific bug is getting busy will help the infectious disease and neuro team come up with a specialized and specific course of treatment and hopefully knock this thing out quickly.  There really is no telling how long it will take to get the infection, so it's a wait and wait game.

I wish I was able to post more about her life at home, but for now-the hospital it is.  I am very thankful that we atleast got to spend some quality time together as a family.  I look am looking for strength and praying for clarity that I can better understand and get through this experience.  Thank you for the support that we have already received.  I will need a lot of help with my other daughters, so I thank those that are offering to help-it means so much!  

I'll keep you all posted after surgery... and into our new room...  XOXO

UPDATE: surgery will now be most likely postponed till Monday.  Still waiting on patient room-they are extremely full.

Living life with Family and Friends

During our first couple of weeks we layed low.  We really wanted to give Lauren a chance to adjust to the world and spend some quality time together.  we did get a couple of chances to go for a walk on the walking trail, and took big girls to pool.  

hi

Visitors from Georgia

With her first weekend at home Lauren was visited by her Aunt Christine and her cousin Ashley.  It was such an amazing weekend getting to catch up and watch them with my little butterfly.  Christine gave me such amazing emotional and spiritual support during all of this and I knew that she was so excited to hold and touch Lauren.  Ashley was so sweet and excited.

First time with Lauren

The girls-cousins and friends for life

Home is sweet

Getting ready to leave hospital

In the car seat for first time-getting ready for long drive!

It was so exciting getting Lauren home.  Of course her sisters screamed, squealed, and giggled for days.  I believe Lauren is on kiss #million from her sisters.  It's amazing how involved and concerned they are with her.  They discuss things so openly with me about her condition, scars, and ostomy. 

The day after we got home we went to her primary physician who did a total check.  All along her hospital journey they had been sending faxes to her doctors office so they knew exactly what was going on...when we got there, which was refreshing.

On way to doctor

Later that day me and the girls gave Lauren her first bath at home.  She hated it at first, but then got the hang of it and really enjoyed it.  Peyton helped me wash, while my little photographer took tons of pictures.  Only a few are here for you (Taylor really does go crazy with the camera:)

After her bath her nanny and Aunt Gina came by for a visit.  It was so nice to have them hold Lauren.  When they saw her in hospital she wasn't able to be held or was on an external drain.  She just stared and stared at their faces, then would crash out in their arms.  Very sweet...  Linda and Gina helped out tremendously with the girls while I was in the hospital.  I will forever be grateful for their generosity.

with nanny