Monday, March 29, 2010

Second Post Op Cardiologist Appointment

This morning we went to Abi's second post op cardiologist appointment.

She did great and Dr. Greene was very excited with Abi's progress and with how great she's doing. She gained 2lb and grew 1.5 inches since her last appointment. Her respiratory rate is great, heart sounds very well, her saturation was in high 90s, which is perfect; echo showed that there is no fluid around her heart, the repair looks and works very well. Since today we won't be giving Abi lasix and her blood pressure meds will end with the next visit, next month.

Next month, when we confirm Abi continues doing so well, we will start stretching follow-up visits. 3 months, 6 months and once a year ;-)

It was a great way to start the day and the week!

Now praying for all the other heart babies. Ava- going to get a closer look at her heart done this week, and Kelsey going for her heart surgery at the beginning of April!!!


Wednesday, March 24, 2010

8 Months

No Words Needed

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Monday, March 22, 2010

Respiratory Rate


Before the first surgery Abi's respiratory rate at rest was 60-70 and just right before the surgery was getting as high as 80-90. After the surgery it dropped down to mid 40s and when it got in to 50s we chec
ked with her cardiologist and this is when they found out the obstruction.

We just counted her breaths and ...... 36/minute while she's sleeping. How awesome is that!!! ;-)


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Thursday, March 18, 2010

Simple joys..

Abi is such a happy little girl. She had a lot of fun with daddy today, who apparently was in the shopping mood and got Abi a hat, pull out the cart cover - not mentioning color coordination of her outfit. Well done. :)

We practically do not need any toys. She enjoys empty paper cups, plastic bottles and coasters, even her empty tray seems interesting to her...

She can play with them for a very long time.

She is such a joy! I can't wait sometimes to be woken up by her to feed her in the middle of the night (I'm serious), so I could cuddle her and kiss her sweet and sleepy little face. I am addicted to giving her kisses!!


Tuesday, March 16, 2010

2 weeks after surgery & doing great

Just a short update.

Abi continues doing great. She is so active now we have to keep our eyes on her all the time. She grabs everything that is close enough, even when getting it means leaning forward so far while sitting that her chest touches the ground between her legs and she needs to stretch her arms as much as she only can.

She is so adorable, "talking" all the time, giggling and never letting smile off her face.

Her feeding habbits are getting better and evening routines are improving too. More predictable and much easier.

Her grandpa is doing very well too and can't wait to come and meet her ;-)

Thank you all fo your thoughts and prayers!

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Friday, March 12, 2010

The first Post-Op behind us

We have our first post-op visit (first after the second surgery) behind us. It went very well, except the x-Ray itself. Abi just hates x-Ray with passion, though the results were awesome. Both the x-Ray and echo look very well and seems like the repair is working great. The cardiologist was very pleased with how things look and how Abi is doing and recommended the following medical treatment for now: Love Her, Feed Her and Let Her Grow ;-)

We got the Lasix down to half of what she was getting so far and we are going for another visit in 2 weeks. We hope to lower Lasix even more then and to maybe totally stop giving her Prinivil (the blood pressure medicine).

Thank you to all of you praying for her and us and for all your comments!!!!


Thursday, March 11, 2010

Cardiologist Post Op Appointment


Tomorrow we're going to the first post-op cardiac appointment. X-Ray early in the morning and then cardiologist. We're pretty anxious to be honest though Abi has been doing great since the surgery. She eats great and is back to being the wonderful herself except for nights. Again she's waking up often and seems to have harder time falling asleep in the evenings.

We'll know more tomorrow!

Have a great night every one!

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Monday, March 8, 2010

5th Day Post Op


Our little Ms Muffin is doing great; like nothing happened 5 days ago. She's very active, moving around all the time and curious about everything; seems like the surgery hasn't slowed her down in any aspect and she is comfortable and not in pain. She's not only responding. but is initiating smiles like she wants to show how cute her smile is.

Her eating habits haven't changed much since the pre-surgery time. She is still into solids more than into milk. The breathing has definitely improved. She seems to be on a 'hospital' schedule and wakes up several times a night. That's a pretty significant change comparing to the nights she slept through before the surgery. We hope to get there again soon.

Good night,

Sunday, March 7, 2010

First Night Home

Abi was very happy to be back home, back in her bed and back in her high chair. After the bath she fell asleep almost immediately though she treated it as a nap and was up an hour later. Then it took her a while to fall back asleep. She woke up 3 hours later about midnight, ate like a champ and went back to sleep. Woke up again at 4.30am ate really well again and went back to sleep just to wake up about 6.45am and chill on her own in her bedroom for the next 45 minutes. Yup, no crying no fussing while waiting for her time to get up.

She's really happy and all smiles all the time. We didn't have to give her any pain killers overnight nor in the morning.

She's doing great so far!!!


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Saturday, March 6, 2010

3rd Day After Surgery In Pictures


Unnecessary wake up at 5.20am for labs that never happened

Chillin' when there is nothing else to do

After very successful x-Ray packing the bags to clean up the room

Packing the valuable cargo

With discharge papers rolling out

In the car

Fun ride

In 72 hours from the surgery....

Getting my girls home!!!!

Thank you THANK YOU all for your prayers and support!!!!!!


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Just chillin'


Last night wasn't too bad. Abi had a hard time falling asleep in the evening and once in the middle of the night. At 5.30am a lab tech showed up to draw some blod because one of the IVs that had a good blood return stopped working and they needed to poke Abi to get some blood. We were really unhappy about this since we know it is very difficult to find Abi's veins so we told the tech to wait 5 minutes and the nurse to give Abi painkillers. Well the tech said she was too busy to wait 5 minutes (really???) and she would come back in 30 minutes. Well we were up all this time only to hear from the morning nurse at 8am that yesterday's lab results were so good the doctors decided we don't need more blood today.

Now we're waiting for rounds and another x-Ray reading books and having fun.


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Friday, March 5, 2010

Echo and x-Ray


Today's x-Ray and echo confirmed the surgery went great and the baffle reconstruction was completed successfully. Eveything works as expected and there is no blood flow obstruction in this pulmonary vessel and the leaking tricuspid valve is leaking much less. Both ventricles are strong and the reconstructed atriums look great.

Abi is done for today with tests, x-rays, echos and whatnot. Time to rest.


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Time to play




Since Abi woke up only couple hours from the surgery and got
out of the CICU the very next day without any sedation meds she got to experience the soreness of her chest this time, hence the changes in breathing. She got couple deep breaths and then was breathing faster but not this deep to avoide pain. This seems to be naturl and normal after surgery and last time we did not observe anything like this because she was sedated for the first 2 days.

Right now she's sleeping and resting and breathing just fine.

And the saturation is in mid/high 90s; 98-100.


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Where Is My Chest Tube


Where is my chest tube? Where are my pacemaker's wires?
Oh, they are all gone!!!!


Just to add to it Asia and I got to be with Abi when they were pulling the wires and the tube out.

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Seems like the bleeding has completely stopped and we hope for the chest tube to go out maybe even this morning. Still waiting for the doctors and rounds.

Abi seems to be uncomfortable often so we are trying hard to manage her pain and not to drug her up at the same time. She slept pretty restless and was waking up a lot though around 3am we got some first beautiful smiles.

The only thing that worries us at the moment is her breathing. There are 3 different ways she breathes. First, she breathes in and holds the breath for a moment before she let's it out. After a while she starts breathing fast and then she slowes down a bit. This cycle repeats very often. Once again we are waiting for the doctors to discuss this with them.

More soon.


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Thursday, March 4, 2010

Oxygen is off


45 minutes ago the Respiratory Nurse came in lower the oxygen level to 1/4 liter - very little oxygen and a low flow. I told her, when Abi is ready to be taken off the oxygen to see how she is maintaining the saturation, I wanted to remove the nasal canula from her nose to give a real chance to breathe without any obstacles in her nose. Last time we were here they kept it on, but it's like breathing with your fingers in your nose. Now we know better and we take charge of things and decisions. We are a lot more comfortable and we know what we are doing, what Abi prefers and is best for her. After all we are her best and loving advocates.
Abi is eating very well, not like last time, when she got the NG tube in and struggled to eat from the bottle.
She's resting now.
The 2 main things that keep us in the hospital are:
- the saturation - should be in high 90's
- drainage from the area around her heart. She's got the chest tube in, but the bleeding is very minimal (less than 50ml within 24 hours and it decreases every day. We need no drainage to remove the tube.
Once those 2 are checked, we can go home.

Who knows maybe we will be home for the weekend!

Thank you for your prayers and support.
Greetings to all, family, friends and B&T folks!!


The Room


Abi just got her room on the floor. She's out if the CICU. She started eating really well and when we talked to the surgeon about 2 hours ago he said it's very possible they would take the chest tube out today.

She is doing great. Still on oxygen 0.5 L so we hope she will be able to get off of it tonight or at least tomorrow morning.


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Morning visit

11:45 am
Abi is sleeping now, relaxed and full after eating 4 oz twice this morning from the bottle with no problem. As she's sleeping she's snoring and moving her lips like she was sucking on a pasi.
She looks so cute and peaceful.
We are coming back around 1 pm to feed her again. The hospital ordered Abi the formula she likes and some solid food. I didn't realize hospitals do that.
Art is going to get Abi some fresh avocados she loves.
We are now just waiting for the room available for Abi in the step down today, as she is ALREADY ready to go there!


First Drink


We just left CICU (according to the policy parents can't be with their child during shift changes and rounds) but we had great time with Abi.

She is doing great! Since they extubated her, her stats are in high 90s to 100 (that's excellent), she got Tylenol once only and was not showing any signs of discomfort or pain. She's off all meds and just got some antibiotic. The antibiotic is administered routinely so she doesn't catch any infections. When we were moving her to get her ready to drink she started crying; this could be pain related or jut simply the fact we woke her up (she doesn't really like it) so since she could get some painkillers wr decided to gi with this. Afterall she had her chest cut open yesterday.

When she woke up we gave her pediolite but she wanted to bite on something rather than suck from the bottle so we dipped mouth swabs in it and she was munching on them taking all 5oz in ;-)

The bleeding is nothing to be concerned with and they may remove th chest tube tomorrow or maybe even today. This tube, central line, 2 IVs and pacemaker wires are the only things she still has going in to her body. The central line will go out today. The IVs and pacemaker wires will stay till about the day she is discharged.

After drinking the pediolite Abi fell asleep and we could leave without feeling bad about leaving her there.

Everyone says she's doing great!

We will be back to see her about 10am ad will know more then. Any wait to move to the stepdown room.


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Vent Is Out


Abi's breathing tests went well and she was just extubated. Her sats were between 94 and 97. Once they extubated her sats are 100. She's doing great breathing on her own and still sleeping. Blood pressure and heart rate are great and they are taking off the two heart meds she was on after the surgery (NitroPrusside and Milirone)

We will try feeding her about 5.30am. Seems like she will be going to the floor today! ;-)


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Wednesday, March 3, 2010

Abi's running!

We went to visit Abi again. She is doing great! Started initiating to breathe on her own and slowly waking up from anasthesia and started kicking her legs...



We saw her!

We just came back from the CICU. Abi looks soooo beautiful; not swollen, with less IV's, not bleeding much. She may be getting off the ventilator in a couple of hours, maybe by 7pm!!! WOOOOHOOO. This means she may be ready to eat from the bottle at midnight. We are so happy with the progress.
I'll post the picture soon.

We are sitting in the family room now with some good firends who came to spend time with us.

We are planning to go back to see Abi in a few hours, so she can get her well-deserved rest. We need to bring some of her favourite toys and a bottle, so we can feed her when she's ready.
I really hope she will not require a feeding tube.

If she does as well as the nurses and doctors predict, we may be able to leave CICU even tomorrow. I will pray for this to happen, but I'd rather not enter entertain this idea, so I won't get dissapointed.

Still, all is good...

The surgery is over


We just spoke to Dr. Kirshbom- the surgeon. The surgery is over. Abi did great there were no surprises nor complications. The outcome so far us great and the symptoms we wanted to eliminate seem to be eliminated. The pressures in the lungs and the right ventricle are about 50% down now and it's great.

There were no issues with coming off of the bypass machine, no excessive bleeding and they were able to close her chest.

In about 45 minutes we should be able to see her in CICU.


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Surgery#2 - Update 4

Our "angel nurse" Jackie is back... She was assisting with another surgery and came to see us as she remembered us from last time. Remember Jackie? Well, she went to OR where Abi is, checked on the situation and called us with an update. Stacy, too called us before so we had 2 updates within 25 minutes. Abi's chest is being closed now and we should be able to see her in about 1,5 hours! Prior to that we will speak with the doctor.
All is good, God is good. We are thankful for your prayers and those who are here with us physically and in their thoughts.

Perz or Perez?

We were just called to a room#1 where we were told to wait... Wait for what? We just found our Abi's chest is being closed.
Well a few minutes of anticipation resulted in a crying maybe 8 year old Hispanic boy, who just came from the surgery expecting to see his parents. Obviously we didn't look nothing like them, not even mentionig the skin color not matching.
Anyway I cried with the kid wishing this never happens to Abi. The nurses now KNOW we are PERZ not Perez!

Surgery#2 - Update 3


The repair has been finished and went well and as planned. The heart has been closed up and they will make the first and hopefully the only one attempt to take Abi off of the bypass machine. Once they do it and everything is fine they will close up her chest and start preparing her for CICU.

It will take another hour or a bit longer before we hear anything else.


Surgery#2 - Update 2


Phonce call # 2 from Stacy.
Abi is now on a heart-lung machine. She is tolerating all meds well. There were scar tissues but Dr Kirshbom was able to go through without any major problems and has just started the actual repair..

Some of the things I write I feel like I'm living in the past - and experiencing de ja vu.
I think this is a good thing... maybe we'll be able to be home within a week as well.


Surgery#2 - Update 1

Just received a phone call from the nurse -Stacy - from the OR.
Abi didn't wake up when she was given anesthesia. The echo was done, lab test. SHe was prepped for the surgery, intubated and now Dr Kirshbom started actual surgery. He is cutting through the scar tissues that billed up after the first surgery. This may take a while. Next update in 1,5 hours.




On July 24, 2009 at 7.27am Abi was born.

Today at 7.27am she went in to the OR


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Minutes before surgery

We are in the room with Abi and just gave her Pentobarbital to make her sleepy. The anasthesiologist just came in to tell us he will take even better care of Abi than before. And they did a really good job.
Now, waiting for Abi to fall asleep in our arms and take her to the OR.

More updates when she's at the surgery.




It's been a long short night. Abi was waking up often and so were we.

Now it's time to pack the stuff and head to the hospital in 25 minutes.


I just wanted to add that Abi slept with me in 1 bed tonight for the very first time. It was an interesting experience. She had hard time falling asleep in a different bed, not her crib, but I think she enjoyed the idea of mommy lying next to her. She woke up several times to reposition and to eat before midnight - the last time she could drink milk. She woke up again around 3am, 4am to see if I'm there and touch my face. It was soo cute. At 4:40am she woke up again, when she had some pedialite.


Tuesday, March 2, 2010

Out of hospital

We are leaving the hospital after pre-op. The last person we talked to is Anna- the anesthesiologist from Poznan, Poland who we met last time we were here. We realized how many people have recognized Abi and us, including the radiology tech-we didn't even remember.
Abi did so well today! Though, she cried so much when she had her blood drawn - well when they attempted to do so on both arms with no success. We found out later from Anna that they can do it in the morning while she's asleep and will only delay the surgery by minutes! What? What's the point then? To save 10-15 minutes? I'd so much rather save her tears!

Before the lab.

Chilling on daddy's arms...


Now, she's sleeping while we are heading to the nearest Target to get a few things, eat on the way and we are going to the Ronald McDonald house where we got the room for tonight. We are not going to stay there after the surgery and will try our luck in the lottery for the room in the hospital. We want to be as close to Abi as possible while she's in CICU.
Thank you all for joining us in this difficult journey number 2!