So glad to see Isaac go

Last night, we were surprised by Brett who walked in the house. He had stayed behind to be on the Isaac watch, but came to bring us some much needed things. After only about 4 hours with no power, we were some of the lucky ones to get it back. This morning we called our neighbor back home and found out we had power at home too. Just in time for the Saints game. We came back the looong way due to closed highways and have settled back in. We did have minor damage with water but nothing major. Most importantly, we are all safe. Goodbye Isaac!

Olivias first hurricane: Isaac

Olivia is safe and sound at this time in Baton Rouge with her siblings and grandparents. We left daddy at home and we are enjoying the ac for now. Minor damage to our fence at home but all else seems ok. We will continue to "hunker down" and wait for this slow mover to get the heck out of dodge.

Clean bill of health

Yesterday, we went to the ent and general peds. Olivia is 19# 13 ounces, 28 inches long. Her sats were 85 and her heart rate in the 120's. She is developmentally right where she needs to be. She is crawling, babbling, trying to pull up on furniture, she can use her pincer grasp to move food that is small to her mouth and she is getting more teeth. She does have fluid in one ear that needs follow-up to see if it goes away on it own. The cyst on her ear is soft and the least of our worries according to the pediatrician. She received two immunizations and will get two more in October. She will then finally be up to date. We are trying to pull all the final details together for her birthday party. More info to come shortly.

Love my little warrior

The other day, as I sat in another doctors appointment, I had a huge awakening. Life as an HLHS parent is filled with many joys and just as many sorrows. The most important thing is how you look at each one. For all of the fellow heart moms and heart families out there.... I'm sure alot of this will sound very familiar.

1. We were given the joy of a beautiful new baby.
           Our joy was crushed with the diagnosis of HLHS.

2. The delivery of our bundle of joy was a wonderful experience all its own.
          The sorrow of the impending Norwood surgery and the unknown was always looming.

3. The joy of hospital discharge was the first step to her becoming our own.
           The realization that we can be admitted again at any moment is never far from home.

4. Every little milestone is a huge accomplishment for our little fighters.This includes even a pound.
          Sorrow is when they get sick and lose that pound in the blink of an eye.

5. The overwhelming feeling of relief and joy when seeing your baby in recovery even with tubes coming from everywhere.
         The dread and guilt when a complication is found.

6. Looking forward to the birthday parties and life events that each day become more and more a possibility.
       The horror when we hear that another little heart warrior has earned their wings well before their  time.

7. The overwhelming pull that our heart warriors have on complete strangers no matter where we journey.
      The cringe when we see someone touch our baby's hand and wonder how many germs they have just spread.

8. The pride we all have in the hospitals and staff that we have entrusted our babies to.
       The worry that our trusted surgeon may retire prior to surgery number 3.

9. Finally the never-ending joy that... our little heart warrior was given to us and we will never be the same because of them.

I realized this as I sat in yet another doctor's office worried about c-diff and how to prevent and treat it. There will always be something to worry about. There will always be a twinge in my stomach when she doesn't act like herself. Nothing is ordinary with her anymore, because she is not ordinary... and never will be.

Love my little heart warrior!!!!

home we go

the cartiologist came and said that we can do all of what they are doing from home. he then told us to Call our pediatrician if we had issues. homeward bound

C diff it is

Last night, the nurse came in with the news. The frustrating part wasnt the diagnosis but the fact that we have been saying it was c diff since admission. We have no idea how she got it. The doctor wrote for flagyl which is an antibiotic to treat it. She is still getting fluids but is still having 10 stool diapers a day. Poor thing... today when weighed has lost 2.4 pounds since sat night at 9pm. More updates to come

Answers???

Last night was more of the same. Olivia is still having diarrhea and living the life on pedialyte. Today  when the doctor comes...we are hoping for answers. She did get more sleep than the first night which is a plus.

Olivia still in hospital, and I have a sick husband and son

Olivia is in no hurry to do much of anything. She is still having loose stools, almost 7 or 8 diapers today.  She finally starting having some pee diapers, but is still getting iv fluids to meet the divide.  Lab results from last night matched the lab results this morning.  Her little body is pretty swollen and we are just at a loss for what is wrong.

On a positive note, we now know it is mildly contagious.  Brett and Nathan seem to have contracted the diarrhea and vomiting issues Olivia is having.  Brett and Nathan are getting some quality nursing at my mom's house while I sit here at the hospital.  Hopefully I'll get some help tomorrow from my sisters.  Not to mention some better lab results for Olivia.

Smiles

Last night was a typical night in the hospital...long with very little sleep. Olivia after getting a bolus of iv fluids and fluids for 12 hours straight is now swollen but finally had one small pee diaper. We are still trying to get her to eat, but I will take small steps. Hey, she is smiling too....

Another night in a hospital

Labs came back....dehydrated and acidoic. For those not medical, she is  so dependent on her fluids balancing out her acid in her body. When she gets behind....it builds up, she breathes faster making it worse, her sats drop leaving more acid. Very vicious cycle. She is getting iv fluids to flush out her system and build up her fluid volume in her blood stream. We dont know why she is vomiting and has the runs since no one else has it or has gotten it since wednesday. The doctor is trying to get a urine sample too, but she hasnt gone in 24 hours so it may take a while. We are hoping she will wake up in the am a whole new kid.

Not feeling so hot

Olivia has been battleing vomiting and diarrhea since wednesday am. Today, no urine and still diarrhea. So we are now in the er at olol. Fun!!

9 months old

Olivia turned nine months old today! We are so excited and she finally made a major milestone too. She crawled!!!! Now it was a little funky, but we will gladly give her slack. Here are some pictures of her today.

Dont know where to go from here...

Friday, Olivia had an eye doctor appointment. We were going because her eye goo is multiplying even with the eye ointment three times a day. The eye doctor here stated that the tear duct probing could be done in office with no sedation or anes as long as we did it before she turned one. Sounds great right? Well I thought so too  until she said that if she moved...she may have damage done to her eyesight. How does anyone stay still let alone a baby while someone is probing their eye? So now we have to decide what we want to do. Do it here and chance it or wait and go to CHOP. Decisions decisions....