My little trooper ;-)

Livi is such a trooper. After a long day spend at the hospital the surgery went great and now she has one less tube out of her precious body. It was funny though yesterday when I was trying to wake Livi up to take her @ the hospital for the surgery, she was having such a hard time awaking. My sister Tina that was standing right behind me slowly whispered at her: "Liiivi, time to go to schoool..." (she said smiling...mine as well say school cuz hospital and school are the same for Olivia since she goes in and out several times a week with no problem). We both looked at each other and started laughing because it is sooo true and we both needed a good laugh to take the edge off on a stressful day like that.
I love my sister Tina. For all of you that don't know her she is one of the greatest,more lovely and tenderhearted people I know. She came to the states just to baby-sit Livi and she has been a second mom to her (sometimes she does her care better than I do it). Tina's visa is expired though and she might have to go back to Albania which it will be very sad for all of us since we have spend such a close and wonderful year with her. Please pray for my sister so she can get a visa extension and be able to spend some more time with us and Livi which she spoils constantly.
God has been very wonderful to all of us and I know that no matter what He will be there in our every step of the way.

Next in line for the tooth-"Fairy"

Our Livi Lu just got her first tooth on Thursday...such a joy. Peter and I feel so blessed looking at her grow everyday and seeing how much better she already feels. I call her our little "Energizer Bunny" because since we got home she hardly naps and even at night time she gets up and wants to sit-up with her eyes still half way closed...sooo funny. Her recovery has been great. Her labs are still very manageable so her Dr. Steinke (the nephrologyst) decided to take the P.D ( peritoneal dialysis) catheter OUT. When they first told us we were sooooo shocked...our eyes teared, our hearts felt such a relief and OUR HOPES got even bigger. This all means that we can POSTPONED the TRANSPLANT until they see it necessary :-)))))))))))))))))

Her P.D surgery is on Monday around 2:30 - ish but she shouldn't be in the hospital for more than a day. I know everything will go well since YOU ALL are praying for our little angel.

Home sweet home!

We finally brought our baby girl home last night. It feels great to be able to hold her without all the tubes and monitors. It is amazing the difference in "energy" that she already has compare to before the surgery. Livi loves even more to sit-up now and also sleeping in mommy & daddy's big bed...not by our choice, it will be until she gets over her anxiety of doc & nurses... or anybody that gets close to her but us... temporary I know. Thanks again to everybody for your prayers, we couldn't have done it without you ALL.

Change of plans.

Not even minutes i posted the last post Livi's Dr. came and told me that she doesn't feel comfortable sending us home tomorrow due to her cardiomiopathy and some med. changes she likes to make due to that condition. ...Bummer... oh well whatever is best for our princess.
She did say though it might be Sunday or Monday so it's still close enough. Hopefully no more change of plans :( ...

On a mission.

Today Livi and I were on a mission. Around 7-ish in the morning the cardiologist came for the morning round and told me that in order for Olivia to be discharged she had to get certain tests done (EKG,Eco & chest X-ray). Once I heard the word "HOME" that was IT. All the tests were ordered for this weekend and Monday but after we talked with the Dr. she changed her mind & sended us downstairs to get EKG and ECO today around noon. Olivia did great even though not sedated she stayed still for the whole time...made me so proud. Once we got back in her room I couldn't stand the thought of another day here if we didn't have to. Here I grabbed Livi again (disconnected from monitors) and went right at the Dr's desk with a big smile in our face and asked when did we have to get the x-ray... The Dr. started laughing and replied " I ordered it for tomorrow but I see you already disconnected her and i know you're shooting for home tomorrow so we'll get it within the next hour...MISSION ACCOMPLISHED :-) .
We don't know what time tomorrow but so far Livi is still stable. Her labs are not the greatest but our office in GR will be able to get her back in shape. I'm so proud of my baby girl, to go through so much and still have that sweet big smile in her face as a testimony of our AWESOME GOD.

We sure miss dadda. .

I know you all got a taste of Peter's sense of humor with the last post. Livi and I couldn't have done it without Peter, his jokes, his optimism, his knowledge and above all his role as a father and husband which he does so great. Peter went back to work two days ago and we sure miss him a lot. Every time he calls I put my phone on speaker for Olivia and she goes crazy...her arms and legs go up and down followed by her blowing raspberries like he is there in front of her.
I have to say thing are getting better for Livi. As of last night she is finally off the oxygen & she has been tolerating that fine. She is still getting her 'fix" (adavan) but now is every 12 hrs through the IV and the oxycodone and Tylenol every 4-6 hrs. I just spoke to the night doctor and she thinks that we might go home early next week...YAY... "home sweet home" can't wait.

Still recovering.

We are so happy and feel so blessed with Olivia's recovery. She is currently trying to adjust to life outside the intensive care unit. It's been stressful not only for Olivia but for Dajana and I as well. There are two patients to each room and Olivia's roommate cried all night creating a chain reaction. We're trying to ween her off some of the pain meds but its proving to be a bit of a slower process than we originally thought. Our little "junky" seems to like the drugs a little too much :) They're giving her very little doses but after last night she needed a "fix" badly. Just a few minutes ago one of the nurses came to check on Livi and began talking to her in the usual "baby-voice" that most adults use. After a few minutes of blank stares from Olivia, the nurse retreated and said "Oh yeah, she's stoned." We all laughed. She's now closing her eyes to sleep, with no doubt the smooth melodies of Jimmy Hendrix swirling in her head. Anyway, Olivia's biggest challenge now is getting her lungs clear and dry so she can go home. She seems to be doing better each day so please continue to pray for us. We could not have made it this far without your prayers and support. We love you all.

Great news...

Things have gotten better..way better :-)))))) . Olivia is finally off the ventilator and all the tubes are out(beside the PD catheter and feeding tube). She was up for a couple of hours last evening which gave Peter & I the privilege of holding our little princess. We couldn't steel a lot of smiles from her since she is very congested and not feeling well from the vent-tube BUT she gave us a bunch of them today. By the way she is such a daddy's girl. She has been reaching for Peter the whole time and has been 'blowing raspberries" at him since they do that a lot at home together... ADORABLE...
Today they moved Livi out of the PICU to a general/moderate care room...healthy upgrade :p.
She is recovering very good and there is rumour that she might come home this coming weekend(as long as they get her lungs under control ). Thanks again for all the prayers... our GOD is an AWESOME GOD.

GOD is watching ...

Olivia had another good night. She has been pretty steady for the most part with saturations. This afternoon they took out the two chest tubes which is AWESOME ... less pain for her. Before they got the tubes out the nurse was changing her diaper out and she decided to hold her breath until she turned blue... just to show everybody who's the BOSS...it's sooo Olivia. It was scary to watch but didn't last long since the nurses came and suctioned her out pretty fast. Now she looks way more comfortable. Also today they started to do "sprints" on her which is allowing her under the ventilator to take "breaths" on her own for about one hour. She really did very good but they are going to repeat it a couple more times today and HOPEFULLY tomorrow they can get her off the ventilator. Can't wait to see her pretty face that is trying so hard to keep her eyes open and move her hands and legs in front of us so we can kiss them :))))) .
Thanks again for all the prayers because GOD IS WATCHING OVER US...

Progress...

Today I have to say has been a better day so far. Livi looked so much better. Her face isn't as swollen and nor is her belly. They took out one of the chest tubes (3 more to go), went down on the morphine drips and her chest X-ray looked so much better (they couldn't even see her lung yesterday). So far her blood pressure has been stable (one less med) and they are hoping by tonight to go a bit down on the ventilator. Livi is tolerating her feeding fine so she is getting almost 0.5 oz per hr.
She did open her eyes for the first time around 10:00 am ...YAY...and it was soooo precious. She looked at us back and forth and her little mouth start drooling because she wanted to talk so bad :-) . We had to stop talking no matter how much we wanted to play with her so she didn't start getting too much stimulation and had to get more sedatives.
I brought her favorite nite-nite book "On the night you were Born'' so i could read it to her but couldn't do it... tears covered my eyes as soon as I opened it so, Peter took it and read it to her as we both held each one of her little hands until she went back to sleep.
The day is still long but thanks to all your prayers we believe things will get better soon :-) .

OUR LITTLE SALSA DANCER!

Not many changes today beside her being more awake. When we got there in the morning, I don't know why but I was expecting things to look better ( a bit unrealistic). Her belly is still swollen quite a bit & her left lung is partially collapsed due to all the fluids which means she is still on the ventilator probably for another couple of days. She still has the 3 chest tubes and the dialysis catheter to drain her.Every time we called her name today she would start to move her legs and hip as much as she could so the nurses are calling her "Olivia the salsa dancer"... It fits her perfectly. Beside that she has been holding our hands all day and really squeezed them every time we tried to let it go. I know she is really sedated but I swear she knew we were there. It was just another hard day since we can't do much to help her & she squeezing our hands/fingers it made it harder... It was like she was calling for help and her mommy & daddy couldn't do ANYTHING. We don't know how much we can take seeing her like that,I hope GOD will heal her little body soon. We can't even look at her without falling over her and bursting in tears :((( .On the positive side we're hoping for a better day tomorrow. They just started feeding her so hopefully that would help...