Post Op...

We finally got some sleep last night after this past stressful week. Before we left our hotel room around 7-ish we called the hospital for any updates since we didn't get a call during the night. When we called her room, the doctors had just finished their round on Olivia so the "verdict'': They decided to take her back to OR and put a permanent dialysis catheter on her since things weren't looking the greatest :((( .
I felt like putting the phone down and start screaming just thinking the pain my little baby girls is going through...
I guess she hardly peed during night time,so after all the fluids given to her for her heart are just sitting around her lungs and her little belly looks like a beach-ball, sooo sad. Just during the night time she has gained 1 kg (2 lb) and is all drowning her body. We rushed to the hospital and asked to speak with both docs (cardiology & nephrology) to why all this change in just 7-8 hr.
They are all blaming her kidney function and all the fluid in her body is pressing even more on her kidney which is making it harder to pee. Livi is in so much pain meds because she has been so restless and each time we talk to her she tries to move her hands & feet from excitement... it brakes our heart ...I wish we can just take her and cuddle with her to comfort her little body.
Her other surgery is around 2:00 pm. They'll put the catheter and two draining tubes by each kidney to drain her body hoping this will help with everything and above all the ventilator which is running pretty high right now.
I pray that God helps her during this time and makes her better soon because our heart aches for ou little Livi since nothing is in our hands... she is so innocent like million of other children and have done nothing to deserve this..
Thank you all for all the prayers and comforting words that you have sent our way...

Olivia's surgery

Tuesday morning was so hard... We all got up (after having Olivia sleep with us for the first time ever) got dressed and headed to the hospital. She was being soooo cute like she knew where she was going. Around 7:40 the surgery team came and got her and the surgery didn't start until one hour later. Before that the surgent Dr. Ohye spoke to us and told us that he wasn't going to put the dialysis catheter yet thinking to give Olivia another chance on her kidney as long as she continued to pee. Within an hour and a half he had everything done ( the surgery was supposed to last 3-4 hrs). What a relief that was when he came out and told us the good news... no dialysis and her heart was finally working right.
At around 11:30 we finally went up to see Livi. She was on a ventilator and asleep from the anesthesia and the morphine. Our baby looked so peacefull asleep and beautiful as always that it was hard to believe she just went through an open heart surgery. The day seemed long ... not much changes during the day, so we left around 8-9:00 pm for our hotel expecting a better day tomorrow...

Getting ready...

... Yesterday I got a phone-call from Livi's U of M nurse and she told me her surgery is scheduled at 7:45 Tue. morning. Her pre-appt. on Monday will be from 10:00 am until 5-6:00 pm so the good news is that they'll let us take her to our hotel room for the night. YEAY!!!

Today was a very hectic day since there is so much stuff to take care before we leave for An Arbor. Since we got up this morning Olivia helped me get all her clothes and blankets ready including aunt Lydia's awesome quilt that aunt Vera just finished washing. We're so thankful for our aunties including our auntie Tina that babysits Livi everyday even when she doesn't have to :-) .
Well packing is not much fun but I hope next time we pack, is for a family vacation which is very much needed.
Thank you all for all your prayers, ph-calls and txt-mssg, we really appreciate'em :)))

Apple is our favorite fruit - ) since we live in MI.

Two weeks ago we finally got the okay from Dr. Steinke (the nephrologyst) to start giving Olivia baby-cereal by mouth. You should've seen Peter and I after the doctor's appointment... we drove right to Meijer, headed to the baby-food section and with the "allowed food list" in our hands tried to pick up as much as we could hold. Neither one of us was looking at each other until we headed for the cart and... it was too much food since we can give Olivia just one fruit or vegetable per week, sooo... we both laughed and had to put some back and try to take the shopping EASY :-)
It was a great experience. At first we had to start with plain rice cereal, which she wasn't much into, then I decided to add a bit of apple and what a difference that made. What can I say, she likes sweets :-) probably because when she was in NICU the nurses (which we love them) always gave her sweeties -) .
She eats everyday about 1-2 tsp of the apple cereal, sitting on her big girl "bumbo" chair. I love her messy face when she smacks her lips so she can taste the food better. Can't wait for the doc.'s appointment this week to see how much she weights.

The surgery date!

For the passed couple of weeks I have gotten phone calls from the surgeon's office in Ann Arbor that i have purposefully ignored... I just wasn't ready to set a date yet. Peter and I have had long talks and shed many tears over this date but it has to get done to better Olivia's life.
Friday afternoon Livi's cardiologyst office called me with a date since I couldn't decide on any one during September... and it will be SEPTEMBER 29-TH.
Also during the nephrologist appointment last week we found out that Olivia's kidney(whats left about 29 %) will shut down for good and she will be in dialysis until the transplant(which will be next year before she reaches two).
Even though we were somewhat prepared about all of these I have to say it has been harder than we thought... I feel like days are going too fast and hours are flying by :( .

Livi still looks more beautiful than ever and she can almost sit up by herself. Also since she just had her 6-months birthday mamma gave her a pedicure which makes her look like such a girl that she is :-)
Please pray for our little princess that God watches over her and that everything goes great so we can bring our Livi back home soon.

Our big girl is now 12.lb !!!

One of the best parts of a doctor or nurse visit for us is Olivia's weight. Today was one of those days. Livi finally reached the goal that we had been waiting for a long time ..."12 lb" . Our little girl is finally growing :-)

Olivia loves her bottle!!!

It is such a wonderful feeling to be able to feed Olivia by bottle. Every other day we have been able to give her a bottle around 6 o'clock PM and has been going great. Seeing Olivia suck on that nipple and really coordinate her breathing it's really God's miracle. She is now taking about 2oz with no problem and be content at the end by keeping her oxygen levels in higher 90's.

At the doctor's appointment today Livi's weight was 11 lb 15 oz and 24 inch long. God is really watching over her and us everyday, thanks to all the prayers said for us from all our family and friends. Dr. Steinke didn't do any changes this week with her feeding beside increasing the formula-volume since Olivia is continuing to grow :-) .

I know I have mention it before how much Olivia loves bath time... it gets better... she can now sit up when I give her baths (with my help) and loves it even more because she gets to play with her legs and feet, splashing them like she is running... LOVE IT...
Her hair still sticks-up even though I got a big part of it combed down.
Also no matter how much lotion I put over her after bath-time it doesn't last long. Livi is continually putting both of her hands in her mouth (maybe teething soon) which has given her a new nick-name from Dada: "Daddy's Sour-dough bread"... got to love it...

We are so thankful with Livi's progress and can't wait for the years to come...

Our Livi Grace is now 5 months old.

Olivia is now five moths old and more alert than ever. She loves to sit up ... with help, suck on her fingers, especially on the left index and doesn't like to be cover at night at all. It is so cute to see how upset she gets when you put even a light sheet on her... she wiggles her feet as fast as she can and starts pulling the corners of the sheet away from her making cute little sounds :-) .
She still loves bed time stories or mommy to sing to her in Albanian... puts her right to sleep.
Also twice a week with the home-nurses help Livi is taking milk out of the bottle and she is doing great. She is consistency taking 1 1/2 oz by herself and enjoying every single suck.

Yesterday we had her cardiology check up. She is doing so much better. Livi is now 11 lb 6 oz and 24 inch long (quite a difference to us from a four pounder when she was born).
Her cardiologist Dr. Lee had spoken to the surgeon in U of M and they think that they can wait to do the surgery until the end of September-beginning of October as long as she continues to grow.
Also her labs are way better to what they have been since she was born. We took Olivia every week to the nephrology office for check -ups since she was discharged from NICU but we're finally getting a brake and spacing those appointments out to every other week due to her progress... she is such a FIGHTER.

Peter and I can't tell her enough how blessed we are to be her parents. She is growing so fast and we can't be more happy with her progress :-)

Our Family pictures

On memorial day Lisa Kae (aunt Lydia's friend) came over and took beautiful pictures of our family. It was so nice of her to do that for us in her day off.We finally have family pictures and I can't wait to print them all and fill-up our walls with our little angel's pictures.
Here are the links:
slide-show:
http://lisakaephotography.smugmug.com/photos/swfpopup.mg?AlbumID=8378770&AlbumKey=tivhD

gallery: http://lisakaephotography.smugmug.com/gallery/8378770_tivhD/1/549781177_PLCvD

Thanks Lisa. You're a great person and above all an awesome photographer :-)

Smiling makes everything better !!!

One thing that we can always describe Olivia is "smiley" and "happy" no matter what she is going through. Yesterday we had the cardiology appointment and once again Olivia had the biggest smile and the loudest "gu-gu's" as soon as Dr. Lee entered the room. After they got her vidals, EKG and ultrasound Dr. Lee sat-down and told us that there was something different about Olivia this time. First of all he said she looks so happy and content, her blood oxygen had gone up from high 80's to high 90's, her blood flow from her lungs to her heart had slowed down compare to a couple of weeks ago and she no longer has the extra open valve that was dripping fluids from her lungs into her heart(which she developed after she got that bad "pneumonia" 3-4 weeks ago).He couldn't explain it why but he said it was nice to see things not get any worse after what she went through this passed month. Considering all of these Dr. Lee told us that it's time to consider the surgery now in a couple of months and he strongly recommended U of M due to her weight (still at 10lb & 2oz) and the size of her large whole. Hoping and praying that there is no more set-backs like that last one :-( she'll be climbing the 'big mountain' that we have been waiting for so long (it seems) at only six months old. Dr. Lee thinks that she'll handle the surgery well but we still don't know the recovery since she'll be in dialysis due to her kidney failure...
Please pray for our Livi to continue to be strong and grow bigger so her little body can handle this "huge" surgery .
For all of you that haven't met Olivia yet:
She likes to sleep at night time and take naps during the day (just like dadda);during the day every time we turn the mobile on she moves her feet so fast you think she is running; After she discovered her hands a couple of weeks ago Livi thinks that her left thumb is the most delicious thing in the whole world; her hair... well lets just say it's not going down anytime soon... I guess it makes her look taller(she is now almost 23 inch. long). She loves her swing that grandpa and grandma bought her and when she sleeps at night likes to scoot down in her bed and put her feet up (maybe better back support or holding herself down from always wanting to move and run). Olivia likes to be changed (especially her diaper) and stay just in her diaper with nothing on her no matter how cold or warm is in the house. She has been out two times each in both grandparent houses and uncle Steve & aunt Vera house too, one time at the church and one time at the mall with mommy, aunt Tina, her little cousin Briana(that loves to hold her hand) and aunt Vera( I guess six is our lucky number so far :-P ). Livi is always happy and looking at her bright smiley face every morning gives Peter and I strength no matter how rough our days can be...

Livi is a fighter

On April 24 Olivia had her first surgery, Nissen G/Tube,rotation of her intestine and an appendectomy. The surgery went very well but as they were bringing her to us she decided to stop breathing for an instant which gave all the nurses and docs a big scare because of her heart condition. When they brought her upstairs to the PICU she was on oxygen, pale as a ghost and had a big rolled sheet under her shoulders to open her airway (made her look very uncomfortable) and was very hard to see. Being a strong baby as she is Livi got herself back off the oxygen in a couple of days. For the rest of the recovery she was put on level 7 which is the nephrology floor so they could get her electrolytes back to normal before she got home. During her stay there things got worse. The nephro team, being so big on her nutrition forgot about her health conditions and filled her up with IV fluids so much to the point of having the chest x-ray look like two big clouds instead of lungs in her little body. I was at home that night since Peter did the night shift so at first I didn't know what was going on until I called to check up on both of them and I got the answer that no mother wants to hear;" Dajana, I think we're loosing her. She can hardly breathe and she looks blue... " We both thought we were living a nightmare. Peter was there next to her crib, by himself, trying to comfort her. The Kidney doctor, Dr. Bunchman enters the room and as he was looking at him said: "I'm worried about her Peter. I think what I'm seeing here is heart failure..." Can you imagine what was going through Peter's head at that instance... screaming probably wouldn't have done justice to what he was feeling right there an then. Not even minutes later, Olivia's cardiologist, Dr. Lee entered the room and said "I don't believe what we're seeing here is heart failure. What I see is that Olivia has been overloaded with fluids. What a relief that was. It seemed like 20 doctors swarmed to her rescue by putting her in PI CU (again) and giving her some Lasics to get some of her extra fluids out. I got there right before they transferred her upstairs and seeing her in agony and breathing for her life was one of the hardest moments we've experienced so far. I don't know how Peter did it all night long. As we waited for them to take her to PI CU, Peter and I looked at each other with tears in our eyes, listening to the monitors loudly beeping and Peter's dad gently holding Olivia's hand, promising her that if she got better, Grandpa would take her for a ride in his big green truck.
This experience has cost us more heartache and ups and downs that her NI CU stay. She was there until May 5-Th, Tuesday and rushed back to ER on Monday and admitted again on May 13-Th for another week. We can definitely say that she has spend more time in the hospital that at home since she was born. Scary but it's always rewarding bringing her home and getting to cuddle with her again, giving her baths that she loves so much and cover her with kisses without having to worry about all the wires that she was connected to and the loud monitors that beep continuously. Livi has been home for almost a week now and she is doing much better. She is on continues feeding(non-stop drip feeding through a pomp in her G/Tube all day)and seem to tolerate that fine. I don't think we can do it without all the prayers that are said for us everyday. Olivia is God's miracle and she shows that to us everyday through her precious life.
Livi got her labs drown again today and they are finally normal (as normal as they can be) thanks to Dr. Steinke which is working very hard for her. If you ask us how we're feeling right now despite all the different meds and feeding receipes that change every week to keep her stable,we would say:"Life is good... our little miracle is finally home, again, and we're trying to take one day at a time." Thanks for all your prayers.

I'm finally home and I'm loving it

Olivia is now at home after 5 weeks in NICU (Jan 31-March 08)and she is doing great adjusting to the new environment. She sleeps great during the night time and is pretty alert during the day. Even though on a lot of medications Livi is really growing fast and really good with all the health issues. She gets her nutrition through her NG/tube (tube from her nose to her stomach) but we're trying to get her to breathe slower so we can give her a bottle.Our precious baby girl now weights 8lb :-) . Olivia loves to roll on her belly and sit up when mommy and daddy helps out, being sang to and have her hands held (no matter if she is crying you'll always get a smile out of her if you hold her hands). Finally we feel that our life is somewhat close to normal since we don't have to drive every morning to the hospital to see our little angel. Our LIVI is finally home and we're loving it :-)
P.S
(We just want to thank everybody for your love and support and our favorite nurses Jill, Janelle, Miranda and Marsha that took care of Livi so good)

Olivia Grace Harrison is finally here

Olivia was born on January 31-st, 2009 at 2:47 pm. She was delivered by c-section at Spectrum Health Hospital with a weight of 4lbs,15oz and a length of 17.5 inches. After she was born Olivia was diagnosed with hypertrophy-cardiomyapathy, ASD - VSD (whole in her heart) and severe hydronephroses which has left her with about 20% of one kidney. Our beautiful baby girl which is in NICU at the moment, has a head full of black hair and blue eyes. While waiting for her arrival we both were so curious to see who she looked like...well, there is no doubt, Olivia is the spitting image of her father. Take a look at the pictures and judge for yourself.

Waiting for Olivia's arrival...

Her room is finaly finished... 11 more days to go...