Abi's 2nd Christmas

We wish everybody Merry Christmas!!

May this special season be filled with love, joy and only good memories!

Change My Diaper

This is great! This morning Abi got off our chair went to the place where we keep her wipes, diapers and cream, brought one by one to the living room rug looked at me and laid down to change her Diaper!!!

It wasn't too wet or dirty at all and it was the first time she's ever done it, but who knows maybe it's a first step to getting out of diapers












Art

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That's New

This a new trick Abi just learned yesterday. She learned two more funny things but I hope to record them soon and upload here.

This is our futon in my office ;-)

Art


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First snow experience!

Is This Normal For This Age?! :-)

I am seriously asking this question, is this normal for this age?! Abi's not even 18 months yet (she's not even 17 months yet) and last week, when we were hanging out at our friends house, Abi was playing with their children, in their room, not needing us at all - that's a great progress! Then she started messing with the door -closing and opening it over and over again. We did not want her to do that and possibly get her fingers hurt so I went over there to tell her to stop doing it. No, it did not happen, so I held the door and kept telling her she was not supposed to do that anymore, explaining why.

Now, here's the fun part (and my question): she was listening to me talking, looking me in the eyes and when I was done, she made a step forward, towards me, still looking at me, pointed her finger at me, then moved it to the side, pointing at the hallway and said: GO.

Is this a joke?! I don't think she's supposed to be this logical yet: daddy goes = he stops bothering Abi.

She did it again, yesterday when we were hanging out with another couple and their children. After being told she was not supposed to touch their DVDs she looked at me, pointed her finger at me and said: bye bye.

It is super cute and she's absolutely fantastic, and I guess we are just starting another chapter full of new exciting challenges.

Art

December to Remember - 1yr after 1st OHS

Yes, the first surgery was exactly 1 year ago!
December 9th is definitely one of the important dates in Abi's life. I remember that day clearly, even though I do not go back there too often.
Let me share a piece of Abi's story I wrote for the book "Matters of The Heart' vol2 that is to be published next year, to celebrate Abi's 1st sucessful open heart surgery!


July 24th, 2009. A beautiful miracle baby girl was born. Her name was Abigail Maja. Who would have thought she had a serious heart condition by just looking at her? Despite her diagnosis, she reached high scores in Apgar scale and was the healthiest and biggest baby in NICU in Charlotte, where she spent first 3 days of her life. Even though, I wasn't able to hold my baby in my arms right away, it was comforting to see her being so healthy and discharged to go home within 72h. She was not showing any symptoms of her complex little heart, so diligently studied for months before her birth. After, what appeared a bumpy road though pregnancy filled with nearly 20 ultrasounds and echoes; amniocentesis and hearing progressively worse diagnosis, we were finally able to enjoy her at home for nearly 3,5 months. Abi was closely monitored by Dr Greene, who had been able to identify all the defects and to lead us through the process, until we noticed her poor eating habits and rapid breathing. We brought it up at our monthly cardiologist visit. We kept a very detailed feeding log for the first few months of her life, so we could tell she wasn't taking enough and was burning too many calories. She would barely eat half of what she was supposed to eat and was breathing between 65-80 breaths a minute (normal respiratory rate for infants is 40-60). After consulting Abi's condition with the cardio thoracic surgeon in Atlanta, the decision was made - Abi was scheduled to have a Pulmonary Artery (PA) Band procedure in early December.




On December 6th, after we saw my mom off at the airport, we began our trip to Atlanta. We spent the night at our friends’ house and early morning on December 7th, we registered at Sibley’s Children’s Hospital in Atlanta, GA for the pre-op. It took 7 hours before we were able to leave the hospital. As soon as we put Abi down, we got a phone call from the surgeon. We were told that the cardio thoracic surgeons, pediatric cardiologists and pediatricians got together to discuss Abi’s pre-op results and they all agreed that PA band would only get things worse and it was not an option in this situation. Instead of going into the surgery, the very next morning Abi got admitted to the hospital and had her catheterization (cath) done. The procedure took about 4 hours.



After the cath all the doctors got together again and then talked to us about, what they believed was the best option. According to the doctors, the best next move was to perform the open heart surgery called double-switch. It was a very difficult decision for us to make in such a short time. We knew we should let the surgeon fix her heart, as the valve was leaking heavily, so we told the doctors to proceed with the plans and schedule the double-switch surgery (originally planned for much later or never) for the early morning.



Abi slept through the day and most of the night after being sedated for the cath procedure. She woke up before 5am hungry and thirsty. She could only have clear liquids to drink, so she drank 5oz of cherry flavored pedialyte provided by the nurses. She would normally drink 2-3 oz at the time, so we knew she was super hungry.



The nurses came with some sedatives that Art gave Abi around 6 am. She started to calm down and got sleepy. She slept for an hour in my arms before we carried her to the surgical area and let the anesthesiologists take her from us. It was one of the hardest moments in our lives, as we didn’t know if we would see her alive again.



The surgery lasted 9 hours. The most difficult 9 hours in our lives. Even though we heard from the Operating Room (OR) every hour, anything we heard wasn’t enough for us. At one point during the surgery a surgical nurse came from the OR to talk to us. She told us that everything was going according to the plan and explained that the reporting person stands literally a couple feet from the operating table, so when they call to update the parents, they have to be quiet and provide brief information. She also flipped her name tag with a prayer to Jesus on the back and said that the surgeon was a tool in God’s hands and all the people involved were believers and felt God’s presence in the room. It was a confirmation of words we had been receiving that day from others. We appreciated that personal gesture and even though it was still difficult, we gained an incredible peace from this moment on.



Once the surgery was finished, dr. Kirshbom came to talk to us. He said the surgery went very well and if he could have planned the best outcome this would be it. Abi did great, but due to the swelling of her heart, resulted from the extensive and complex surgery, he was not able to close her up. Her chest was left open with a plan to close it maybe in 2-3 days. 45 minutes later we were able to go to Cardiac Intensive Care Unit (CICU) and see our little girl. Abi was hooked up to so many machines, wires, monitors, chest tubes and was so swollen we could barely recognize her. We were prepared to see this, though. I admit, it is a shocking view to see if you have never seen babies after heart surgeries. It was extremely hard to see her like this. But she made it and was doing great. We were so proud of her!



In fact, she was doing so great they closed up her chest the next afternoon (not in 2 days as planned). 2 days later, on Friday they pulled out 2 chest tubes, one IV line and on Saturday took her off of oxygen, to move her to the step-down unit on Monday morning. Abi was doing so well, recovering so quickly the doctors were saying they were really amazed, especially since we were told to expect the recovery time, in the best case scenario, to take 2-3 weeks. The staff at the hospital was wonderful, but we still had to fight for her fights that she couldn’t take on her own. We knew our little girl better than anybody else, so there were situations when we had to stand up for her and tell the staff to adjust some of their expectations or routines, because it wouldn’t work nor benefit our little girl. And we were right... We were correct about her sats (blood saturation) when we told them to take the nasal cannula off, since the oxygen was turned off anyway. They were not sure about it, claiming it was not affecting her breathing and since the oxygen was off it should not really matter. The problem was that when Abi was falling asleep the nasal cannula was partially blocking her nostrils, therefore breathing was more difficult for her (babies are nose-breathers, not mouth-breathers) and her sats were dropping overnight. Let me mention that every single time the saturation dropped down to a certain limit, the monitor would go off and beep until manually snoozed or when the oxygen level went up. And it would go up and down a few times within, as little as, 15 minutes. That translates to no sleep! Finally we told the technician we were taking the cannula out and once we did that, Abi had fantastic sats and slept great (so did we). We faced a similar situation with the feeding (NG) tube. They put the tube in and let us feed Abi with a bottle, saying that if she didn’t eat enough, she would have to go home with the NG tube. We really wanted to avoid that and we finally noticed that the NG tube was irritating her and she did not really want to suck on the bottle. We told the nurse to take the tube out and that we would feed Abi on our schedule, as at home, not as they would want her to eat and that changed everything. She started sleeping much better, her sats were great and she started eating better than ever before. Abi was 4 months at the time and even though we knew her reactions, likes and dislikes, it was extremely difficult in this new situation to enforce what we thought was right and better for our child. The parents are the ultimate decision-makers and they should question and even take charge in situations when they feel uncomfortable or something is happening against their instincts.


Abigail was discharged on December 16th, 2009, 7 days after her double-switch surgery. When they told us in the morning we would be going home in the afternoon, we couldn’t believe it. Being able to spend Abi’s first Christmas at home was the best Christmas gift ever!


And here's Abi today, enjoying activities at her start-smart pre-school:

Abi's trick:

Abi with a baloon:

Abi's Heart Friend, Kelsey

 My friend's friends who have a precious baby girl, Kelsey, are going through a very difficult time right now. I had the privilege to speak with them couple times over the phone before Kelsey's first surgery and I encourage you to read their story and ask you to pray for them.

If you feel God is giving you the opportunity to help them in any possible way, please do.

It's our privilege when God chooses us to make a difference in others lives.


Here's Kelsey's blog: http://kelseycorlitofoundation.blogspot.com/

15 Month Pediatric Checkup

Today I took Abi to her 15 month appointment with pediatrician.

Abi's weight continuous to be in the 75% at 24lb and 9oz and she grew 2.5 inches since her last appointment 3 months ago. This put her at 94% measuring 32.5 inches. Her ears, eyes, nose and everything else are fine and overall development is just where it's supposed to be.

She got 2 shots today and she did great. Fussed for maybe 1 minute and after that was as happy as could be.

Next visit at the pediatrician office in 3 months around the same time her next cardiologist appointment.

Thank you for checking on her and praying for her!

Greetings,
Art


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15 months of Joy

It's been 15 months since Abi came to our lives. She is so wonderful and happy.


We are visiting her pediatrician tomorrow for Abi's 15-month check-up. Actually, Art and his parents are going to take her. I hope she'll do great and be a brave little girl while getting her vaccinations.

As much as I am not worried about the weight-gain and general condition, I am curious of how the appointment will go. I have never missed any of her appointments!

J.

CHD Awareness-Heart Walk

This past Saturday there was a CHD Awareness Heart Walk in Charlotte , NC downtown. Unfortunately I worked my 24h shift this Saturday and I was not able to join but Asia, Abi and my parents did get to join and it was a great experience and really good initiative.

I do hope we will get more involved next year! And maybe some of you will join us too ;-)

Art


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14 Months

Today Abi's 14 months old. It's crazy how fast this went by. She's walking, even running, understands everything she is supposed to understand in 2 languages and, yes unfortunately she knows how to tell us 'NO' in 2 languages too; in one would be enough and still heard too often :-)

She's a wonderful 14 month old, absolutely gorgeous and lovable child and, today especially, I just can't believe how blessed we are to have her. I hate that under pressure of day-to-day life we tend to forget how blessed we are and what a miracle she is. I've been thinking about it all day and am celebrating this little miracle with an incredible joy in my heart!

And this is her- she put my hat on on the way from gym. She's really proud of herself when she manages to put a hat on her head like this ;-)
















Art

Just some thoughts

I'm watching Abi carefully; every day, for as long as possible. Sometimes I find myself looking at her totally forgetting about the world around me. I can't believe how fast she's growing, changing, learning new things and many of them on her own, just figuring them out.

It is absolutely fascinating to watch her explore. We, adults, take way too many things for granted; stop paying any attention to them; forgetting their existence even though they are with us every day.

Asia and I have learned so much about not rushing things, not rushing life, enjoying and cherishing every stage Abi's at because one day it will pass.

And not long ago Asia said something that changed my time with Abi again. Looking at things through her eyes, joining her on this journey in her world.

And the last couple days Abi stepped on a new path- teething. Yes, she got 1 tooth cut out and there are I believe 2 more trying. She's dealing with it great, including the fevers and runny nose that bothered her so much that she kept waking up a lot overnight. This gives us some extra time to spend with her cuddling with us.

Today I took her to a park and she had so much fun. She loved the slide and two swings. Yes, two since she wanted to be on the other one every 45 seconds ;-)













After we got home instead of going for a nap she decided to read some books with me first. She kept on going to her bookshelf and bringing books, sitting on my lap and when we were dine reading she was going to pick another one.





45 minutes of reading and laughing before the nap.




It was a great day!

~Art

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Speed of light...

We celebrated Abi's first birthday with the family (the grandparents) on Sunday. Abi had a blast digging into the cake with a ... SPOON. Yes, she's a true European lady. I'm sure she'll be using fork and knife before we know it. Naturally, we need to wait for the teeth to come out... but wait.. today we saw one cutting through! Our baby girl is moving forward with a speed of light!

12 months and 2 weeks after she was born, she took her first steps and working on her fist tooth!

So proud of you Abi! Kocham Cie nad zycie!!

I guess I'm walking

Today, very tired before taking a nap Abi took her first solo steps

Art

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After the Appointment

The cardiologist appointment went fantastic. Once again, Abi's weight (22lb 5oz), height (30in), heart rate, blood pressure, saturation (97) and everything we saw during the heart echo was just perfect.

The entire repair done during the double switch, VSD closure, the pulmonary venous baffle and its later repair all look great and work great. Her Ebsteinoid tricuspid valve is leaking much less and today it was more on the mild side than mild-to-moderate. Both ventricles are squeezing strong, heart beat is slow and steady and heart's efficiency is really good.

There was absolutely nothing that would even slightly concern Dr.Greene and the next appointment is in 6 months! ;-)

Once we confirm things continue going this well, next appointment will be in 9 months and then annually.

We are absolutely thrilled and happy!

Thank you for your prayers!

~Art

1st Cardio visit in 3 months...

It is hard to believe that 9 months ago we were in such a rough place with Abi, waiting all day in the waiting room while she underwent her first open heart surgery (Double Switch and VSD closure) and now were are 'celebrating' a 5-month-iversary of her 2nd OHS that took place in March.
It seems like it was longer than that. I remember that we were not expecting to hear any bad news at the follow-up checkup (2 months after the surgery), though we had noticed her faster breathing and 3 weeks later we were back in Atlanta.
Every time we go to see the cardiologist, I experience a mixture of emotions. I am anxious to hear everything looks great and there haven't been any changes. I want to hear the guarantee that she'll be fine from now on and the previous experiences are in the past, never to be repeated.
We do not anticipate any surprising news tomorrow. We diligently observe Abi's reactions, food intake and behavior. She seems to have unlimited supplies of energy, eats for two and is always in a good mood.

We are looking forward to the great report tomorrow. We'll update the blog with the news that the next cardiologist appointment is in 6 MONTHS!!??? ;)...

That would be sweet....

jp

Abi's 1st Birthday Party Pictures

On Saturday, July 24, 2010 we celebrated Abi's 1st Birthday !!! It was a great and fun day.

Thank you everyone who helped make this happen and everyone who showed up! There would be no party without you ;-)

Mommy sang happy birthday upon awaking...

With Daddy in the morning

At the Party

With Julie

With Isabelle and Julie

With Mommy and grandpa in the pool

Dad and uncle Eric chilling

Mom and Dad

Grandma ;-)

With Mom, Jasolyn, Isabelle and Ally 

Again with Mom and Dad

With grandma

Blowing the candle

First bite ;-)

No comments ;-)

Gifts time 

Julie, Kayah and Ally

Uncle Jeremy

On the phone with another grandma

On the way home ;-)