Olivias card appt

Olivia went today for a follow-up with xray. Her plueral effusion is completely gone. Finally!!! We are stopping the super diuretic and will see how that goes in a week. If all is well after that, then we will wean the lasix to twice a day. The goal is to then get her to regular formula after that. We are hopeful. Last friday made six weeks post-op.

St. clement of rome

We met everyone and had a blast.

Intro to st clement

Olivia is going to meet nathans class and celebrate with the whole school in mass. So exciting to know how much the kids love her and they arent even related. Ill post pictures later

Pictures from easter

Sorry this is so late in coming, but here is the first picture of the three kids together at home from easter.

What a wonderful weekend

This weekend was a perfect reminder of how lucky we are.  Nathan and Olivia were surrounded by so much love.  We can not say thank you enough. Today, we found out from Father Finney that Olivia is a local celebrity during her baptism.  It was also a sweet way of saying she is so different.  Here are some pictures from yesterday and today. 

Baptism finale

This weekend is scheduled to be full of milestones. Nathan's first communion is tomorrow which will be a great celebration for him. The one that has been long time coming though has been the finale to the Baptism for Olivia. This will be Sunday directly after the 12 noon mass at St. Clement of Rome in Metairie. It is so exciting, because for so long we wondered if we would be here today to reach this point. So many times we are hearing and reading of parents that aren't so lucky. We know it is last minute notice, but if you would like to come we would love to have as much support as possible. Without your prayers and loving thoughts, we may be in a very different place. We will post pictures for all of the out-of-towners to enjoy.

Busy bees

Sorry for the delay in posting, but we have been busy little bees at home. We have all adjusted to being under one roof, although it did take a while. Olivia enjoyed her first easter and racked up from the bunny. She is now a baby on the go. Here are some recent pictures.

Cardiologist says we are almost effusion free

Today, Olivia went to her new cardiologist in Baton Rouge. He was so nice, a little country, but super kind and very understanding. He did a chest xray and said we are almost completely effusion free. After answering some of our crazy parent questions, he sent us for lab work and scheduled a follow-up in two weeks. We will then be six weeks out from surgery and able to start to wean off some diuretics. Very exciting!!!!! We also scheduled her appointment to see Dr. Shourbaji to get back to normal stuff like immunizations. We are looking forward to this busy weekend of nathans first communion and her baptism.

Finally coming home

Brett took olivia to the cards office today. Her chest xray looked the same as tuesday. The cardiologist said she was okay with her coming home as long as she is seen monday. They added a new medicine to pull off fluid and hope it helps. Brett informed me while the kids and I went to walk the stations of the cross downtown. We are all so overjoyed. It was as if God was telling me that I have carried this cross long enough and now he was there to rejoice with us.
Brett is frantically trying to tie up loose ends and make it on the plane. If all goes as planned they will be home around 9pm. I cant express the joy I feel. This is the best Easter gift I could ever have imagined.

Friday at 10am we learn our fate

She still satted around 71 - 73 last night.   The cath doctor said she would be low the first 2 days to a week.   I hope it doesn't keep us from going home.   She looks nice and pink and I find less blue around her mouth and under her nose.  

And yes she is hanging out naked we are trying to get rid of a really bad diaper rash.   We are letting her junk air out.

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Discharged

Now nothing crazy can happen.   I'll update more tonight

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Going good a little swollen still

Her sats were pretty low last night and her chest xray showed a little more fluid than they liked.   She's gotten several iv diuretics and I think she is less swollen today.   The doctor is very sure we are going back to Ronald McDonald today so that is great.   Looks like we are still on schedule for Friday's good news hopefully

Picture. 1 is from just a second ago

Picture 2 is from 5am this morning

Picture 3 is from last night.

Is she looking better to you guys

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TGIF

If everything goes good we will see.  Dr Natarajan on Friday and get the all clear to go home

Wooooo hoooo

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Swollen

She's has to lay still until 5pm because venous caths require you to stay still for four hours.   Things look good so far.   That being was crazy big almost 4mm.   Wish us luck making it to 5pm without lifting legs or moving too much.  

We are listening to the hair dryer soundtrack right now

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Quick update

Olivia is recovering now.   I'll give a bigger update when she goes asleep tonight.   1/3 of her blood was going to each lung and the other 1/3 was going to this collateral vein to nowhere.   She got a plug and now things should get better in 48 hours.   Maybe we will be home Thursday or Friday hopefully

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Waiting to go back for cath

As we wait I figured you would enjoy some pictures and video

Pictures include Olivia and me,  her nana,  and her good friend Avery from the Ronald McDonald House.  

Just spoke to Dr.  Glatz the cath lab doc she's about to go back.

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Cath pushed to this Monday

Olivia will be going to the catheterization lab on Monday.  They will go in through her neck and femoral artery in her leg.  This will be the 5th time Olivia goes under general anesthesia in her first 5 months of life, and the 3rd time they will go through her leg.  Perhaps they will use the other leg. 

She is still breathing pretty fast (40 per minute asleep, 60 per minute awake).  The thing that keeps this from being a bad thing is that she is still laughing, playing and eating.  If those things changed they would want her in the hospital asap.

Tonight at 11pm Olivia will have her final Enfaport bottle.  Then I will give her pedialyte (bubble gum or strawberry flavored) until 5:30am.  At 7:30am they will hopefully start getting her ready to go back to the cath lab. As soon as I hear something I will let everyone know.  If they coil or stent anything we will be in the hospital overnight.  If they don't do anything but measure pressures and visualize her anatomy she'll go home Monday at some point.

My perfect scenario is this: coil off that big vein they think is causing her lower sats and fast breathing, stay in the hospital a day, fly home Tuesday night and possibly start giving her lovenox Wednesday to thin her blood from the coil or possible clot.  Once home they'll do all the levels and figure out the best dosage of lovenox.  In a perfect world she wouldn't need it and just stay on the aspirin.  However, I feel I should put something negative in my perfect scenario so it actually comes to fruition.

These collateral veins seem to be common, but it is not common for it to effect function too much.  Hopefully this will not be a recurring thing.  It might not be anything, this might just be Olivia's norm and we go home Tuesday night without a coil or a stent.  Until tomorrow we won't know what is what.