More Hearts and New Year...

9:30pm

I know, this blog is about Abi and it will always belong to her, but I also keep thinking about other parents who may have just found out about their baby's heart, like we did almost a year ago. I asked other moms I know, to share their stories with me. I soon should be able to include more information about other Congenital Heart Defects (CHD) to share with you. The power of a spoken and written word is limitless, not mentioning unbeatable Google!! I once "googled" a double switch surgery and found my own research on the FIRST page. This really encourages me to continue to expand this blog and enrich it with more and more useful information.

I would like to use this opportunity and wish Everyone a very Happy New Year. May this coming 2010 shower you with unexpected and joyful blessings and surprises. My hopes and wishes for you and myself are to say in exactly 365 days from now "this couldn't have been a better year!". May every New Year be better than the last one...

Now, we could use a picture of Abi to conclude this post....
Abi literally fell asleep while eating lunch in a sitting position. How about that? I know some wish they could do that (especially at work, eh?)...

Good night...

J.

2009 leaves the scars...

8:30pm
It was such a treat to be able to spend this special Christmas time with the closest family. We would still love to have our parents and siblings with us, but having Abi at home to celebrate the holidays was like a dream come true.


We continue to stop and look at Abi in amazement. Wow, I can't believe she's here with us, already, after the surgery. It will probably take a few more of those moments before we get used to this fact. The only thing that I don't want to do, is to forget about what happened, how God showed His peace, healing power and confirmation of His love to us. I want Abi's story to touch and encourage more people as she continues to grow. The surgery was just the beginning...


The last couple of days of 2009 we are practically brushing up on the daily and night routines, keeping a close eye on Abi's breathing and eating patterns, behavior and the healing scar... 
I pealed off the last 2 bandages on her 8 cm (3.14 in) incision!!
The scar looks great! Almost as pale as her skin. 
I am truly impressed with the look. Just take a look:

This scar...is why she's here and destined to live a very long life...
This scar...is her testimony of God's new Heart for her...  
This scar...tells a story of one brave and strong little girl.. 
If she was able to go through this in a blink of an eye, there is nothing she would not be capable of doing! 

No matter how big and how visible the scar will be when Abi grows up, I hope she will feel proud of it! I will make sure she feels confident about it and will want to wear whatever she likes. 

There were so many times I would think how unfair God was to allow her heart to be so complicated, imperfect and abnormal like that.. I could not in the whole world understand WHY!!!?? He would want such a thing to happen to a baby! 
This year has been filled with a mixture of so many emotions and feelings like joy when we first found out about Abi through fear, disappointment, anger, unforgiveness, helplessness, frustration, envy, sadness to peace, hope and blessed at the end... 


2009 is definitely classified as the most challenging, emotionally draining, exhausting yet educational year of my life. 
It seems like Abi is not the only one with the scar on her heart. We all have one in ours as we went through the healing process with Abi.


J.

Living in peace

10.50am

We got emails from some of you asking what’s going on with the lack of posts since last Thursday. Oh boy, I can’t believe it’s been so long since we posted here. We apologize all of you who check the blog daily or almost daily (and we know there are hundreds of visits a day for what we are very thankful!).

The wonderful Christmas time has just been crazy for us. Crazy in a very positive way. We had visitors almost every day – wonderful! We love you all and we love to have you over!!!! When only we could (definition of ‘when only we could’ is when Abi was taking a nap) we tried to catch up on sleeping as well.

Seems like it is not for us to sleep at night ;-) Two nights ago Asia and I talked about it and tried to come up with possible reasons why Abi was up exactly every 2 hours. It is funny because once we heard her ‘call’ us I told Asia what time it was without even looking at the clock and I was right to the minute. Incredible!!! So we talked about it and we came up with the following list: 1) it’s habitual. No reason for it and not really hungry [but still eating]. 2) Growth spurt (with the amounts she’s eating overnight she must be catching up on the past 5 months growth spurts as well). 3) She’s just messing with us and doesn’t want us to get any sleep.

Other than that she’s still doing wonderful. So far she has not developed any of the possible complications, and even though theoretically she can still develop them we pray she won’t and we know our God is crazy about her and if He has a fridge in heaven her picture is on it, so we have peace about her future. Yes, we live in peace every day. It’s incredible because it is not easy and when we look at things from our, human perspective, it’s very easy to be bumped and depressed, but He’s been good to us for so many years and even now is pouring His peace and love upon us daily! That’s really cool! I’m telling you all who haven’t tasted it yet! Just try!

I’m back to work today, but Asia is staying home for the next couple days/weeks which is great! It is so good to have them both around!

Have a wonderful day!

Art

First Christmas Eve

It was a great day today. Our first Christmas Eve filled with talks about last year when we were talking about today wondering who that would be sitting with us at this table. A little boy or a little girl. What would she look like? What whould she be like? How was it going to be etc. It was a year ago but seems like it was just yesterday. Then we had no idea this Christmas would be so special and blessed.

Art

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It's Wigilia Today

In Poland our families have started celebrating Christmas Eve, called Wigilia. This post is dedicated to them and our friends from Poland! :)


This is how we celebrated Christmas in 2007 with our families...(the last time we actually spent Christmas together..)

Dzien Dobry wszystkim w Polsce!!
Z okazji nadchodzacych Swiat Bozego Narodzenia, skladamy Wam Kochani, wszystkiego najlepszego, duzo zdrowia, pokoju oraz samych powodow do usmiechu.



And to all - Merry Christmas!!

Art, Asia and Abi..


P.S. Abi is 5 months today!!

The Post Office

8.19pm

Last night we got less sleep than any nights before since we came back from the hospital. No, Abi did not confuse day and night which we've heard happens a lot after staying in hospital. She is very active and happy during the day, but keeps snacking during the night. She gets no rest, we get no rest.

I know, it's just a season and we will get there one day when she sleeps through the night.

We had to go to the post office this afternoon. I had to go to the office behind the main area and I took Abi with me. When I was talking to one of the stuff I mentioned Abi's recent surgery and that she's a real miracle baby for whom God has been working miracles last 2 weeks. He looked at me and asked to tell him more. When I was telling him about the hundreds and hundreds of people praying for her when she was going through a 9 hour surgery exactly 2 weeks ago and what God did for her there, and how all the doctors were surprised, he stopped me and said: "I got chills! Please wait a moment." And he went around the corner and called one of his co-workers. When she came he pointed at Abi and said: 'She's a miracle baby! Hear this story!' and he asked me to tell her what I told him. When I was telling her about the wonderful things God was doing and the confirmations he was giving us during that time, she stopped me with tears in hear eyes and asked to wait a moment. (seriously!). She called another lady from her office, pointed out at Abi, called her a miracle baby and asked me to tell the testimony again. By the time I was leaving the guy was very touched, shaking my hand like his best friend's and the two ladies had tears in their eyes. Actually the last one was crying.

When we left the post office and got home, I got a call from them that we left our driver licenses there and I had to go back to pick them up. I took Abi with me so Asia could get some time off and focus on other things and went to the post office. Once I got there, it was packed with people so I got in line to the window where one of the ladies I met before was with another customer. When she saw me, she waved at me to come closer and said: 'We've been all talking about you and your little miracle girl ever since you left' and then turned to the client and started telling her Abi's story. In the meantime the other employee spotted me from the other corner of the post office and started waving to me with a huge smile on his face.

I can't wait to see what God has in store for Abi and her life. This will be so much fun to watch!

Thank you all who prayed us through this difficult time and who joined us on this journey.

Art

1st follow-up visit

7:32pm


Our first post-op visit with Dr. Greene went very smooth, except the fact that Abi didn't let the nurse take the blood pressure. 
Abi weighs 11.05lb. She was 10.6lb last Wednesday, so finally she's gaining as she should.
Abi's doctor was extremely, as he said it "tickled", to see how well she's doing, and after reviewing the x-ray pictures, performing new echo and EKG, he was thrilled to see the results. 
Everything looked perfect. We were able to see the blood-flow in Abi's "new" heart and the baffle that was created by the surgeon (Dr. Kirshbom). Dr. Greene was so thrilled with the entire process, the change of plans, the team in Atlanta and Abigail's extremely fast recovery. He himself called it a miracle and said, quote, "people say there are no miracles, but there are; they just don't look hard enough. Abigail's one of them!". He said that he spoke with Abi's surgeon couple times and they both could not believe how wonderful she's doing. He said that many, many kids with less complicated defects and after much simpler, routine surgeries often end up with some kind of complications and the fact that she has no complications and was discharged one week from this big surgery is unbelievable.
Our cardiologist attended a conference in Charleston, SC, where he met some of the surgeons and cardiologist from Atlanta Heart Center. He said the surgeons were talking about Abi's case. Seems like it was not only one from very few double switch surgeries performed in Atlanta but most probably very first one on such a young child. He said if she continues with this progress her case will definitely make a huge impact on the future of this procedure.


Our little Abi is famous now!! :)


After leaving the doctor's office and a very quick stop at work (I'm sorry I couldn't say hello to everyone) to take care of some paperwork, we came back home to spend rather uneventful day. ..

Thank you for your continuous prayers as God is revealing his powerful and amazing ways!!!!


Good night,


J. 

banana, bottle and x-ray...

7:45pm
Abi's sound asleep. We are after the night routine, that is getting better and better every day, namely less fussing before going to bed. Sometimes, I think she reminds herself: " hey, I haven't cried all day, that's my last chance today'.. In other words, she is such a content baby. She cried only 2 times today, both times when she was super hungry and I was super slow, preparing all the ingredients for supper: milk with rice cereal and a banana.. It was a feast this afternoon. 
We LOVE banana!!!!!!!
As I get to spend more time with her and much less working, actually not working at all...I've become a first witness of her many very "firsts". It's so exciting to watch her grow so fast. Since her mended heart doesn't beat like she's run a marathon anymore, the changes are even more noticeable, because she has strength to focus on other activities... 


For example, today, she started raising her hands as I approach her and tell her to "come to mommy". I don't pick her up until I say that and wait for her response and sometimes I lift her hands, so she knows what to do when she wants to be picked up.... She's such a fast learner!!


Also, for the first time she held her bottle and drank from it!!! 

I still am unsure whether it was a planned action, but it looked like it was intentional.. and she looked a.d.o.r.a.b.l.e.!!


Tomorrow, our first follow-up visit with the cardiologist. We are bringing the chest x-rays we did today for him to review. It was quite a ride with the radiology technicians today. They asked us back 3 times to take pictures, after we continued to dress and undress Abi and headed to the  registration area to wait for the pictures... 3 times!!! Unbelievable! And every time, we had to unstrap and take Abi from the car seat, undress her and put her on the uncomfortable, hard table in 2 different positions, dress her back up, put in the car seat and leave the radiology room. 
So yes, Abi was mad! I need to correct my previous statement about how many times she cried today... add three more :)
At the third time, I requested to stay in the room and wait for the technicians to come back to let us know if the pictures were clear... third time lucky..., so Merry Christmas and 1,5hours later we were done. Oh, and the x-ray pictures take 3 seconds for those who may wonder.
With a hint of sarcasm and a spice of humor... I'm saying: "better those pictures are really goood!!"


Have a blessed night,


J.

Good Days Rough Nights

7.28pm

Today was a good day after second rough night. Last night Abi was up every 1.5-2 hours to eat. Yes, definitally snacking. She does pretty well during the day staying on 3 hour shedule, but for some reason evenings, after the bath are very difficult and nights are pretty exhausting. We haven't figured this out yet. Before the hospital our evening routines were so sweet and she slept through the night waking up once maybe twice, but it has changed since we came back home.

Now she's sleeping again after screening bloody murder and we couldn't figure out what was wrong. We ended up giving her some infant Tylenol in case it was pain related.

We'll see what this night will bring.

And on Tuesday cardiologist follow up visit. Before this visit we have to get her x-Ray done. So tomorrow we will need to find a place near home where we can take care of it.

Have a good night everybody!

Art


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2 weeks ago...

10:00 pm
It's been almost two weeks since we said our goodbyes to grandma at the Charlotte airport...

and the Atlanta roller-coaster....

J.

First laugh!!

12:45pm

I can't believe Abi finally laughed out loud for the very first time today!
I barked while showing her a doggie she recevied from the Lab nurses in the hospital last week and she found it extremely funny. What an awesome sound!
The same day we left the hospital she started cooing like never before, like she wanted to say something or burst out laughing...

A week before Christmas and I have already received my gifts.. Have you?

Blessings,

J.

The lottery...

9:20pm

I feel like I won the lottery today... Still mesmerized and with a note of disbelief I am looking at my happy, super hungry baby as the 8th day is passing by since the surgery... She is a gift from God and her speedy recovery after the extensive surgery; smiley face; adorable coos are like winning a million bucks.
Today she has eaten as much as she used to within 2 days! 34 ounces so far and the day is not over yet. We fed her cerial twice today and she tasted some bananna.
Hopefully, Abi will get some rest tonight after very few cat naps during the day today. Last night she woke up only twice, so I think my hope for an interupted sleep for 5 hours is pretty
realistic.

Abi amazes me every day. It's intersting how a barely 5 month-old can impact and change your life.
I couldn't have asked for a more wonderful daughter!




Thank you for your prayers for a quick recovery for Abi...

J.

Morning Apetite

8.04am

When we got home last night Abi ate great and went to bed. She woke up at midnight to eat again. Now she surprised us when she ate 175ml (almost 6oz). That was incredible and it was just a prelude to the next feeding at 5am. Yes, Abi slept another 5 hours and then ate 210ml (7oz) !!!!

Just to make it clear before the surgery she ate about 90ml (2-3oz) per feeding and ones she ate 160ml and we were so happy. It's an almost instant jump from 2-3oz to 6-7oz. In the hospital they said they would be happy if she started with 80ml (almost 3oz) per feeding.

Another great news and the day has just started.




Art


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We are home!!!

10:15pm
We made it in 4 hours, with no stops and Abi sleeping through the whole trip!! How great is that? She drank a bottle just before we hit the road and slept like an angel till we stoped on our driveway! She ate a full meal, chilled with us, auntie Allison and uncle Drew who made dinner for us; took a quick bath, ate MORE, smiled and talked to mommy; took medicine and went to bed!






It is so wonderful to be back home, that to our big surprise was beautifully decorated with flowers, baloon, Christmas accents and a Christmas tree with presents underneath in the leaving room! Fresh food in the fridge just completed the picture.
We are so thankful for our friends who have been supporting us in this difficult time! Your prayer have paid off and resulted in Abi being at home after barely 7 days after the surgery(!) with only 1 medicine, no feeding tube and a huge apetite! Sometimes people need more time to recover from a cold!!
Abi is my hero! Such a brave and strong little girl!!!

THANK YOU AGAIN FOR YOUR PRAYERS!

J.

Packing

9.57am

Yes, you gor that right. We're packing now and leaving the hospital soon.

Abi had another great night. Ate 80ml in the evening. Than we told the nurse we won't wake her up after 3 hours becuase at home in the evening after the bath we don't wake her up. She's on a 3 hour schedule during the day and overnight she wakes up on her own. So she woke up a bit over 4 hours later and ate 95ml. In the morning she had another 135ml and 3 hours later another 130ml. Over 4oz at a time is better than before the surgery.

Now we are ready to leave despite the view out the window.





















Art

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Closer to home

8:45 pm

One step at the time and we are almost home.
It's been a week since we came to the hospital and tomorrow exactly a week since the surgery!
Abi's progress is unbelievable. The doctors and nurses are astonished how fast she has been recovering. She stayed in memory of some of the CICU nurses and doctors who randomly came by to check on Abi.
As previously mentioned, today's focus was on eating. The oxigen levels are great during the day and at night. I'm so happy we insisted on removing the nasal line, especially when she was on no oxigen. No wonder her saturation was lower since she couldn't breathe comfortably. So "sats" aren't the concern anymore!
As to feedings we started great in the morning with 85ml within an hour! The amounts she drank decreased as the day went by. We were told that she needs to drink at least 80ml per 3h to be able to go home without the feeding tube. She was a picky eater prior the surgery and the doctors knew that but still set up pretty high standards. Whatever she left they put through the tube. I think this caused her tummy aches in the morning- poor thing, she spent a couple of hours crying over the rumbling tummy. We requested some gas drops for her. A couple of stinky surprises later, she was all good.
Abi's surgeon visited us today and requested to remove the feeding tube! So we did and hoped for Abi to pick up on ml's. In the afternoon she only ate 30ml (required 80) and fell asleep in my arms-I actually joined her while having guests (sorry S.A.D.)!
We didn't want the tube to come back and we were defermined to meet he "goal" with a significant Abi's help of course. We gave her a bath, massage, put her in her own pj's and gave the bottle with required 80ml.
She exceeded everyone's expectations and ate 90!! We were so proud of her! So we know, if she wants to, she can do it!
Now she is sound asleep, resting to her favorite night music...as we are slowly heading this direction with hopes for coming home TOMORROW (well we'll stay in Atl till the next day- (thank you L&R)!!!!
Thank you all for your continued prayers for Abi and our family!









J.

9 Hours

7.03am

9 hours

First night in the stepdown was almost like coming back home. We tried to recreate the home rutine. We gave her a bath fed her the bottle - she took 50 ml !!!! and then fell asleep. She slept for 9 hours !!!

We had two goals to meet. Eating from the bottle and keeping blood saturation at the right levels during sleep. Abi's blood saturation was fine during the day when she was awake but when she was relaxed and asleep it used to drop so she still needed some air flow through the nasal tubes.

After eating the 50ml and falling asleep she was not really willing to eat more around midnight so we dcided she would be getting food through the NG tube over night and we will get back to bottle feeilding in the morning.

We focused on the other goal - blood saturation. We were watching Abi for couple hours trying to adjust her possition to find the optimal one with little success. Finally we decided to pull out the nasal tube since the air flow was turned off and it was just stuck in her nose blocking the air flow. Once we did that her saturation was high in norm ALL NIGHT!!!!

Seems like she doesn't need air flow to keep great saturation.

And now when I'm done with typing it we just finished 85ml bottle!!!!! And Asia got 2 smiles ;-)

Art


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This Afternoon

1.22pm

We've been with Abi since about 11am. When we showed up she was still asleep after Versed which she was given to remove the central line from her neck.

Let me stess this out that this is not a complaint, just sharing with you all what we have to deal with in addition to the surgery etc.

When we showed up we asked the new day nurse the same questions we always asked any other nurse. So far Paricia, Sarah, Niki, Amanda, Jacquelin, Krissy were amazing. They knew everything and paid attention to everything. Today's nurse answer to every question was: I don't know. If a doctor asks I will print it out for him. Hehe, awesome. All of you who know me can imagine what happened next. I requested to speak with the doctor supervising her. 20 minutes later we got all the answers from the doctor.

Now we're waiting to be able to move to the stepdown unit. They have already got the room for Abi and we are just waiting for them to get it ready and for the team of people involved in moving her to be ready as well. Once we're out of here we will not have to leave Abi even for a moment.

We will also try bottle feeding her today again. I bet it will go great!!!

And the below picture: my beautiful bride and our little one chilling




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Double Switch Surgery - Part 2

Double Switch Surgery - Part 1

Policy sucks

7:25am


Shift change. A few moments ago, we left Abi alert and confused, yet calm. When we got there to see her this morning she had already been awake. She would complain from time to time with her weak little voice. I feel like there is nothing that I can do to comfort her. We kiss her, talk to her but can't pick her up and cuddle. She is patiently bearing with all the inconvenience and unknown place and people, but it's obvious she's fed up with this place. We can't even be with her during the shift change when the night nurse is giving the report to the new one. They are talking about MY baby! What's the reason for kicking me out when there are no other patients around and hear other patient's reports?
I feel uneasy when I have to leave Abi when she's awake trying to figure out where she's at. It was much easier when she was sleeping, oblivious to the surrounding.
We won't be able to see her until at least 10:30-11:00 am. That's an awfully long time for the baby in the foreign environment not to see her parents.

We tried to offer her a paci but she would just lick it at best. We will keep trying to offer it, so maybe she will eventually start sucking. We need to get rid of that tube as soon as possible..

It's going to be long 4 hours....

j.

6.34

6.34am

Abi slept about 6-7 hours straight. She looks much better this morning. She was fussing a bit when we came; I guess She's just fed up with this place and wants to go home. I know we do.

She had PVC (Premature Ventricle Contractions) going on several times a minute over about 3-4 hours so they increased the air flow a bit since this could be caused by not having enough oxygen reserve. Quite normal after this complex surgery. They have also increased the amount of food she's getting to 15 ml an hour.

The plan is they will discharge her from CICU today! Next she needs to start eating and retaining the food. This is our next goal!





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Weird

Weird

Weird. It's been a pretty good day with all the great news; tubes coming out, IVs coming out, Abi being alert a lot during the day, yet it's been a rough day.

We spent with her about 7 hours this afternoon and she slept about 45 minutes only. She was exhausted; bottle feedings didn't really work. We got to hold her in our arms and it was great. She looked so tired though; her eyes, still big but rather gray than blue disappeared somewhere deep inside; we had to leave for the nurses shift change; it was the hardest moment today; she was awake, looking at us with the eyes saying she didn't really know why we were leaving her. It was easier when she was drugged up and sleeping.

Now, she finally fell asleep. In her big girl bed; listening to the same music she listens to every night at home.

I pray she has a good night.




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Feeding Tube In

Abi is exhausted and she did not sleep more than 45 minutes in about 8 hours hence as at home she did not express any interest in eating and..... we had to put the feeding tube in ;-(








Art

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Feeding Tube Or No Feeding Tube

1.24pm

The heart access line going directly to Abi's left ventricle was pulled out this morning. Since there was no bleeding they also pulled out the last chest tube. This was a great start of the day. Now she's off the air flow as well maintaining her blood saturation very well.

The only that is not going great right now is feeding. She is not too interested in eating and when she does she ends up spitting out most of what she ate. We've tried twice so far and the plan is to try one more time and then to put the feeding tube in. Honestly I hate this plan so I want her to skip the feeding tube.

We'll see what's gonna happen next.

And this is Abi eating the second time.










Art

Off ventilator

As of right now: 9:33pm




J.

Extubation...

8:59pm
Abi is being extubated at this very moment. If everything goes well, we should be able to see her soon, maybe in 20 minutes.
We thought it will not happen today, firstly because of the fluids building in the lungs and secondly because of her saturation that suddenly dropped down to low 80's from high 90's. The nurses couldn't figure out what caused a sudden saturation drop. We prayed it wasn't a stepback for Abi to get exchubated today. After a chest x-ray, they found out the breathing tube was lower than it should. After adjusting the tube, Abi's sats went right back to 90's. :)
This didn't have an influence on the decition to remove the tube.

She was so sweet today. We spent over 6 hours with her. She slept and rested for the most part. When she woke up, she would wiggle and move a lot. It's easy to imagine how uncomfortable this poor girl is. When she cries or caugths, we can't hear anything because of the tubes in her mouth. We can just tell by her facial expressions... It's so sad to see this... especially when we can't pick her and cuddle. I'm not even mentioning the thirst and hunger! When the nurse put a little sponge into her mouth soaked with destilated water to clean the inside of her mouth, she was ready to eat it!! 
Hopefully, after 4 hours from extubation she will be able to get some milk!

Thank you for carying and praying 4 Abi!

Thoughts At The Bedside

1.55pm

We've been at Abi's bed for the past couple hours. She wakes up very often, keeps her eyes open and looks at us. Then she's getting impatient and looks like she would like to say something; her eyes are unbelievable; they speak for her.

Due to her airways being swallen they had to postpone extubating her until this evening. She's on Decadrone, a steroid that will get the swelling healed. They will check again and if everything goes well she will be extubated tonight. If there are no stepbakcs we will try feeding her a bottle about 6-8 hours after taking her off of the ventilator. If she takes the bottle and tolerates the food they won't put the feeding tube in!!!! This would be great since this will be one of the things keeping us in the hospital once she's out of the CICU (Cardiac Intensive Care Unit).

The next steps will be to remove the central line that is in her neck, removing the access line that is going from her tummy to the inside of her left atrium and pulling out the last chest tube that is draining the fluids from the heart area out.

If this goes fine and there are no stepbacks she should go to the stepdown unit and being there is mostly for the parents to learn carding for a child after open heart surgery. Since there are 2 classes we will need to take we are planning on starting as soon as possible, so on Monday morning we will take the 'how to care for a child after heart surgery' class and in the afternoon the CPR class. We have taken this one after Abi was born but we will take it again.

So we may be done with the classes before she settles down in the Step Down unit.

I just talked to the nurse and, she didn't want me to get too excited so she unwillingly said yes, but she did say yes when I said there was a very realistic chance we would be home next weekend!!! This would be best best case scenario, but we saw a couple of those this past week, didn't we! ;-)

Good Morning , I'm Breathing

6.12am

Just a short note. Abi did great last night. Her breathing test went well. Right now, even though she has the tube in her own breathing rate is in low/mid 40s- exactly where it should be. This is wonderful.

Right now she's sleeping after Versed since she was a bit active ;-) and moving around. This is good but not at this moment, since the ventilator tube can irritate her throat causing some swelling which could lead to some difficulties with breathing after taking the tube out.

Let's wait for more good news today!




Art


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Tube Still In But Breathing On Her Own

8.49pm

It's been 30 minutes now since the ventilator is not breathing for Abi and she's breathing on her own like a champ!!! The tube is still in since this is one of the tests but it seems like she will be off of it tomorrow morning.

She's doing great breathing on her own, much slower now than prior the surgery and the saturation is much much better; it's in high 90s.




Art


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She's Such A Fighter

5.44pm

Abi's still on track ahead of the schedule but it seems like the ventilator will stay in overnight. When Asia and I came over and started talking around her and to her she got really excited, started moving a lot and opening her eyes. It's great, but before they remove the ventilator they need to do couple tests with turning it off first. She was too active before the test and they had to give her some sedatives and now she's sleeping so they can't do the test. Since it's getting late and it's better to have more people around when taking a child off of the ventilator they will do couple tests overnight but will try taking her off tomorrow morning. Still way ahead of schedule as the surgeon said this aftenoon when we talked to him.

They took her off of dopamine a d she's doing great. Lowered her breathing rate and now we actually see her breathing on her own as well.

Thank you all for reading, praying and being with us through this difficult time!!!




Art and J.


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Are you ready for this?!

11.31am

I'm sitting at Abi's bed right now. Ok are you all ready for this?! They took her off both medicine making her pee (Diuril and Lasix)!!! They took her off the sedatives (Versed)!!! They TOOK OUT 2 CHEST TUBES!!!! The bleeding in the heart area is that minimal. And ..... They are planning on waking her up slowly to ...... Try to take her off the ventilator TODAY if she's doing as she's doing. I was told she's a little star here doing better than expected and than normaly kids do!

Everything else is in the norm.
Below is Jackie, the awesome nurse who prayed for her during the surgery and who keeps on checking on Abi.







More awesome news soon.

Art


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Another Morning

6.25am

We're sitting next to her right now. Seems like Abi's still sleeping. She had a good night with no episodes. They took her off Diuril since she's urinating enough on her own and with Lasix. One drug at a time. We'll take that!!!

All her pressures and temperatures are fine. The atrial pressures (pressure inside left and right atriums) are excelent!

They lowered her breathing rate and oxygen levels again which is good! Bleeding is still minimal!

It was a good night!

Art

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Midnight

Midnight

The day is over. It was a good day. They closed Abi's chest, her heart is beating strong, saturation close to 100, kidneys are working great pushed by Lasix and Diuril. She is getting lots of meds, fluids and nutrition; all together about 12ml an hour. Started her nutrition and fats through IVs this afternoon. Bleeding in abdomen and heart area is minimal ;-).

The oxygen saturation in the air used by the ventilator was reduced from 60% to 40% (natural is 21%) (this is a good thing). Her heart rate, blood pressure and temperatures both core and skin surface are perfect. They need to use quite a lot of Versed (sedative medicine) via constant drip because she's 'ready to go' - moving and kicking a lot.

We spent couple hours with her this evening and she was just great!!! One of the IV lines was leaking some so they had to stop the bleeding, fortunately they didn't have to replace the line itself.

Praying for a good night for her and hoping for more good news tomorrow we're checking out tonight.

Art


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Chest Closed

3.17pm

We just saw Abi again. Her chest is closed but the suction tubes are still there and will remain in as long as there is some bleeding. The bleeding is minimal though.

She did great and is sleeping right now.


Art


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Righ At This Moment

1.30pm

Right at this moment they brought the operating team to th Cardiac Intensive Care Unit and..... They are closing her chest!!! ;-)

They should be done in about an hour or so!!!

How awesome is that!!!!!!

Art


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We are with her now

Lip balm







Covered with her fav blankie







Sleeping comfortably...

She's doing very well.. Still wants to move a lot, whitch is normal for her age; she's just an active little girl. Her kidneys are working efficiently now. J.

The Next Morning

9.30am

We went to see Abi before the shift change and rounds started, after 6am. We happened to stay during a doc visit and talked to her surgeon. He said that the bleeding is minimal so he may be back to close her up earlier than planned, maybe this afternoon. We are not able to visit our baby girl between 6.30am and 10.00am and between 6.30pm and about 8.30pm.

Abi had a pretty good night. She is very active and moving a lot. The nurses ended up giving her verset (sedation meds) every hour. They ordered a continuous drip as she's not responding to the other sedation medicine. She's just impatient to get out of there!
One of Abi's dedicated nurses prepared a cute name tag, and since she is POLISH too(!!) she wrote it in Polish.



We happen to meet Polish doctors and nurses here pretty often. It's a blessing since they are excited and even though all of them are great these feel special connection and are very compassionate and sweet.

Now we are waiting for Abi's kidneys to start working better. It is expected they would get 'lazy' after general anastesia so she is getting Lasix to help the body lose fluids and stimulate kidneys.

She's still pretty swallen but again, it's expected. She should get better within the next day or two.




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Proud mama

8:10pm
Abi did great. I am so proud of her, she's indeed a fighter.
It's been a very long and tough day, mostly for Abi - I wish I didn't remember this as well, but I will and will remind myself and Abi in the future how amazing and faithful God is. He was there with her and the doctors all the time and will be in the CICU with her.
We were able to see her about 1 h ago.



She is doing well, a little swollen from the transfusion but that's normal.
The next 24-48h will be the most critical. If everything goes well she will have the chest closed on Friday.
Praying for uneventful and restful night for Abi.

J.

The Surgery Is Over

We just talked to the surgeon. He said the surgery couldn't have gone better. Abi has been already transferred to the Cardiac Intensive Care Unit. They are getting her settled down and we will go see her.

Due to bleeding they decided to leave her chest opened so she will be sedated untill they close her up. They will try to do that on Friday. Then they will wake her up. If she's doing fine they will try to take her off the ventilator on Monday.

The prognosis are good and they have already noticed some improvment with the leaky valve which is on the non systemic side right now. There's a chance it will improve further.

We are off to see our baby girl. More soon

Art


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Good news

3:00pm
Abi's heart is beating now!! The double switch is complete. She's lost a lot of blood, as expected, so she's on continuous transfusion. She's still on the bypass though. More updates in 1 hour. So far the surgery is going according to the plan....

J.

Update on surgery

12:45pm
Update from a minute ago: first part of the switch is complete; one of the clamps is removed; starting to warm up the room (its 60F now); Jackie - the nurse came to tell us that dr Kirshbom - the surgeon, is an excellent specialist and God is using his hands, and the OR is filled with angels. This was a confirmation of God speaking through others earlier:
Krista G. (12-08-09): "it will be a super natural-natural thing. The surgeon will be a puppet if you will and the HS will be guiding his hands and giving him strength to do the task speaking in to his ear what move to make next. The surgeon will say in the end that is the easiest/complex surgery I have ever done."
Karl C. (12-09-09 12:18pm): While I was praying this morning, I saw Jesus came into the OR and touched Abi on her head, and he then walked around and touch all the surgeons and nurses.

We feel at peace right now...
J.

Surgery-the lesson of waiting

11:11am
Abi slept all day yesterday after being sudated and woke up 3 times at night to eat. We could tell she wasn't very
comfortable, so I'm thankful she was asleep for the most part. We are up since 4:40 am. We couldn't give her anything to drink after 5, so it made especially difficult to keep her comfortable. Finnally, she calmed down watching Mickey Mouse- I am actually thankful for TV today. It bought us ans mainly Abi extra 40 min of peace and quiet. She actually smiled to us for the first time after 24h. So precious!
at 7:15am she was given meds to make her sleepy. I held her for an hour



until we were asked to walk to the OR area, where she was taken by the team of anastesiologists. She opened her eyes and looked with half curious and half frightened eyes as we kisses her goodbye and passed her to the nurse...."you take my mourning and turn it into laughing?"- not necessarily there yet... One of the hardest things to do; place your precious baby into strangers' arms trying to trust they will take good care of her...
So hard ........
We are sitting in the waiting area for updates every 1 hour.



Here's what we have received so far:
9:42 am - after anastesia, the surgery started
11:00 am - Abi's on heart-lung machine; closing VSD.

J.

Double switch it is...

7:10pm
It's been a long day filled with doctors, nurses and the army of other people who have continuously been invading Abi's room asking the same questions.
Since Abi returned from the cath, she has been sleeping for the most part of the day. She didn't eat until 4pm- for 13h. Once she started she drank 5oz of cherry flavored pedialite she'd never had before.
Anyway, we spoke with her surgeon and he chose to go with the double switch TOMORROW! Not longer than yesterday he wasn't really keen on doing this now because she is so small! Her systemic valve though leaks a lot so there is no point in waiting longer. We haven't signed up for that- that's for sure. The surgery will last about 8-9 hours and starts at 7.30. Along with the double switch they will be closing her vsd. It's going to be an even longer day. Probably the most terrifying, nerve wracking and .... The worst day of our lives. Our precious little girl will undergo a huge open heart surgery. Just this morning she was all smiles, cuddly and joyful and no one could tell her condition is so bad.
She will probably stay in icu for a good week, then a week or two in the perdiatrics... No, that's definitely not what we came here for... I'm hoping and praying for the best... Home for Christmas? Let's take one day at the time.
J.

Change of plans

11:01am
So here we are, waiting for Abi to come out from the cath procedure. She was taken there





at 9:30am and we just got an update on her. Fortunately, she's sleeping all the time and she just got some more sudation, so she will not be scared. The reason for cancelling the surgery at the last minute and going with the cath was that her saturation is in the 70-80% instead of 90s and the echo showed no overcirculation in the lungs. They are trying to find out what to do next. There are a few options: 1. Replacing the severely leaking valve only or with closing VSD (right now its 7mm). 2. Doing a double switch now. 3. No surgery for now. The answer to that we'll know maybe today. They mentioned a heart transplant but this option would buy her no more than 20 years (statistically) of life with 2 heart transplants and then it would be "the end of the road" as the doc said this morning.
Apart from that, Abi is doing exceptionally well, she is so easygoing and patient. Sometimes I think she understands more than we think.
She's handling this much better that mom and dad...

Jo

No surgery in the morning

Late update

We got to the hospital at 9am. We met many people; cardiologists, phisicians, Cardiothoracic surgeons, anasthesiologists and some others. After answering many many questions, having Abi go through heart echo, chest x-Ray and blood work, we were out of the hospital after 7 hours. Abi did great though they wanted to get good pictures with the echo and they sedated her. This caused her blood saturation drop really bad and they had to give her some oxygen. After all of this when we got home they called us saying they didn't like some of the tests results and they don't want to do the surgery in the morning. They want to do a cath, a line driven up one of the veins to her heart to measure everything from the inside. Once they have more info they will discuss what they are doing next.

We don't know what they will do nor what the next step will be. We
have to be in the hospital at 7am and don't know what next. We will keep you updated.

Artie

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We're here...

Finally, granda at home safe and sound and we after 5h trip filled with 4 stops and some adventures-emergency stop to buy a paci we forgot to take for Abi,we reached Atlanta at 10pm. Abi did great during the trip and at night, though found herself most comfortable in my arms, for the first time refusing to sleep in her bed.
Now,we're heading to the hospital for the preop and to meet all the docs , and find out what the plan 4 2morrow is.
We'll post more as we know more....
Thank you for caring 4 Abi ...
Jo.

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