twinless twin.

We lost Lauren today. It was very sudden. She's able to giggle out loud now.
We're working on a service for this weekend. Details to follow...

What we did with our 2 hours!

Lauren is up to 2 hours off her vent 2x a day! Freedom!
Yesterday we went to the zoo. I meant to get pics but my camera card was full :( Alex was most interested in the lady emptying trash and the guy blowing leaves. Lauren really liked the penguins. Today with our 2 hours we went to the splash park. My sister and her boys went with us. Alex did not stop holding his cousin Bryan's hand the whole time. Lauren STOOD in the water for about 5 mins! This is huge! She loved to have her feet in the water AND she is really starting to hold her own weight. There were a million kids at the splash park. Lauren attracted all kinds of attention from children but repelled adults. She laughed and laughed at the shreaking children. We can't wait to go again!

Feels like twins!

I've always wanted to be a twin. To have someone my age to grow up with and play with...so what's the next best thing? Having twins of course. I couldn't have been more excited when I found out I was having twins. As I'm sure we all know by now my pregnancy didn't turn out as planned. It never felt like I had twins. Lauren came home from the hospital 5 months after Alex. She's developmentally half his age. She is now off the vent 1.5 hours twice a day. I have finally figured out how to take then both on a walk by myself. Lauren still has oxygen and suction and an emergency bag I need to take but without the vent it is a whole lot less tricky. Today, in their double umbrella stroller I finally felt like I had twins...and that feeling has been a long time coming...

How could you not love this face??

Lauren has been so happy this past week. She had vent clinic on Thursday during which she had a really heard time breathing but they ran some Albuterol and she was fine. Current weight :22 pounds 2oz. We may need to increase her calories some more. She is doing so much more work of breathing on her own. We are up to 1 hour 15 mins off the vent 2x a day. She also saw the feeding clinic this past week. We are starting a teaspoon of food a day which she takes ok. I'm luck I have a nurse who loves to cook and is very excited to feed her! Speech therapy is also going to start once a week. What can a kid who can't talk learn in speech? communication. Sign. pointing. etc etc.
Alex is doing great. He learned to stand up from an open floor today! He walks now 75% of the time. He babbles all the time and said "bubbles" today but I couldnt' get him to say it again. Does that count?The eating front is another story. He hardly eats anything. and I mean maybe a bit or two of somthing and some cheese puffs. boo.
Thanks for following!

What is normal?

Lauren is much better since her stay at the hospital.
She went to see her neurologist this past week. Nuro was THRILLED with how she looks. Plan is to get her off her seizure
medication. First she needs a 24 EEG at the hospital to prove she's not currently not having any seizure activity. Then we will being the weaning process!

Happy Mother's day!

Some of my nurses made this a special mother's day for me by having the twins makes some frames for me...it always surprises me how much bigger Alex's feet are than Lauren's. Lauren's been home for 24 hours now and doing well. It makes me feel better to see her heart rate under 100 when she is asleep. All the mother's day gifts I need! The second pic is when Alex crawled under Lauren's table to play "with" her!

HOME tomorrow!

I didn't get my fantasy of Lauren coming home today. They wanted to watch her one more night. So, tomorrow it is! I had a mom say to me today "well at ;east you got a good break". Huh? It's horrible when she goes into the PICU. I feel constant guilt if she's ever alone there. Plus, Lauren's not a burden to me. I love having her here. I love seeing her face light up. I love having her bounce repeatedly on my lap wanting me to tip her upside down. I don't feel complete when she's not home. the hospital pokes at my PTSD. Home is where she belongs.

PICU day #4

Lauren did not get another fever today. She's back to being more active again, too. She does have some trachitis the question is if she is septic or not. As of right now, nothing is growing from her blood cultures. If something grows she will need 10 days of IV abx. That's when they will talk about putting a central line in :( If not, I hope to be home with inhaled and oral abx by Friday afternoon. A girl can dream, can't she?

PICU day #3

Lauren got a FEVER today of 102. She's never had a fever in her whole life. We're also getting all kinds of thick/yellow/tan junk from her trach. She has since been started on IV abx and steroids along with inhaled Tob. Boo. I planned to have her home today but I think we all know by now my plans never work out...looks like we'll be at least 2 more days in...if not a lot longer. It all depends on what her cultures show in the next 48 hours...

Let my Lauren go...

After a FANTASTIC day on Saturday, Lauren went back to the PICU on Sunday. On Sat She spent the whole hour off the vent at the zoo. (no, she did not touch anything). Sunday She spent the whole day on continuous Albuterol. Saturday she spent a whole hour outside in the fresh air. Sunday she took an ambulance ride. Saturday we got her to weight bear and STAND on her feet! Sunday her heart rate was hitting 200.
They don't quite know if she's sick or just having lung troubles from the weather. She on a short course of steroids and as of yet no antibiotics are started.
As it sits now the doc wants her to be able to tolerate (ie no wheezing) every 4 hour ALbuterol. Right now, she's on every 3 hours. Prayers for a good night overnight because I can't wait to get her home. It's too quiet here. I wondered what that noise was last night...I was hearing the clock in the the family room...I had NO IDEA it made noise. Here's to a SAFE and HEALTHY homecoming tomorrow!