Last year review

Last 12 months were really busy and a lot good has happened.

After celebrating Abi's 5th birthday with multiple parties both at home and at her grandparents' in Poland, Abi started Kindergarten.

I am amazed at how much she has learned within the first couple of months and continued to practice for the remaining on the school year.

She can count, read, write, does additions to 200. Just crazy! And all of this before she turned 6.

Her cardiologist appointment went very well and no changes have been recorded so she keeps on going strong with the meds and no limitations.

In the winter we signed her up for swimming lessons and she really enjoyed it making a great progress. In the summer she did a great self awareness and self defense training for children called radKids with Carolina Self Defense.

In the very early spring her grandparents came to visit and celebrate her 6th birthday with us early.

In couple of weeks Abi's going to 1st grade. Her pediatric well check went great a her cardio appointment is in 2 days.

Our Facebook CCTGA (LTGA) Group is growing, meaning there are more people and families getting so needed support and information.

If you're here, on this blog, because you just found out that your baby has LTGA (ccTGA) and you're searching for information, want to learn about this defect and need support please find us on Facebook.

5th Birthday - or Birthdays ?

Five. There must be somthing magical about this number. I wish I remembered when I turned 5. Months before turning 5, Abi was psyched about her 5th birthday and being 5. No matter whether asked or not she kept telling everyone she was just about to be 5 years old.

So, since it seemed so important to her, we chose to jump on the same wagon with her and, yes, celebrate all month long. We took the girls to see the family in Europe and this was a great start to the month long celebration.

There were 2 birthday parties thrown for her in Poland and then another one when we got back home. The last weekend of July, or rather the last week and first weekend of August she got her last birthday present and it was spending all day at Carowinds with mom, dad and her friend. It was her first time at such a great amusement park and, to my surprise, she was unstoppable and fearless. She rode all the rides, all roller coasters she was allowed on (even those she barely made the hight requirements for). She had a blast and we all had a great time!

Here are some pictures starting with the pictures of the first birthday party.

First 5th Birthday party (no more picture at the moment of writing this post, still sitting on the camer).

It was a fun birthday party thrown by her grandparents at a children's place. Bouncy houses, outdoors playground, games etc.

And the most important, a Barbie princess cake :-)




A week later, the other grandparents threw the 2nd 5th birthday party. This one had family and cousins over and ended with sending 2 big lanterns up in to the skies :-)









One week after getting home, there was the 3rd 5th birthday party at Sugar Pop's, back home





And here are some picture from the trip to Carowinds. Oh what a blast she had. I'm truly amazed seeing how brave this little girl is












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Little bit of winter, little bit of spring

As much as we love the weather in NC, last spring, summer and fall have been really unusual and there we go, 4 seasons in 1 week.

Yes, 8F on Tuesday morning and snow for 1.5 days. Yes, 1.5 days. Then Friday, yay, spring came to town, 66F, long stroll to Bruster's and then to our great playground for an hour of crazy play.

The picture below is the following: Top- Tuesday. Bottom- Friday the same week





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It's been too long

Yes, it's been way too long since the last post and so much has happened. I will try to catch you up in just a few words, in a short post, with not too many pictures.

Our girls are growing big, smart and healthy, loving each other and being a true joy to be and have around.

In June, soon after our family leaving we went to the beach for our first family vacation. It was a great time and everybody had lots of fun.









After the beach the most exciting day of summer arrived, namely Abigail's 4th birthday!!! Yes our little girl is 4 !!!! I still can't believe it. She's thriving, she's doing amazingly well and does not stand out from kids her age.

Her birthday was a nice and hot day with lots of friends around and ever since Abi keeps proudly telling everybody she's 4 now :-)













And after Abi's birthday we had a chance to visit Atlanta, GA for fun. Yes, for fun, no hospital visits :-) We went to Children's Museum which Abi just LOVED and then to World of Coca Cola and her second best place - Georgia Aquarium. She talks about the aquarium a lot. Glad it made such a good impression on her





Oh and one more thing. Abi absolutely loves swimming and this year she ditched her swimmers and loves swimming with me. She is crazy for diving and going down to the bottom of the pool (5ft) to pick up our toypedo. Loves jumping in to both, pool and the lake. Here's are 2 short vids. One at our pool and one from her visit to the lake with mom. Since I was working and was not there she had to have her swimmer on. She's allowed to swim without the swimmers only when I'm around.

I hope to do much better on updating the blog. With Kaya Annabelle's arrival we're still trying to figure out the new pace :-)

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Drowning doesn't look like drowning

One of my friends posted this interesting article on her Facebook page and with the summer, finally approaching I believe it is very important we think, read and learn more about how to keep our kids and friends safe, so here we go.
Enjoy reading and learning:

Drowning Doesn't Look Like Drowning
















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Patent Ductus Arteriosus (PDA)

PDA, Patent Ductus Arteriosus is not a typical congenital heart defect. It is a natural condition present in all newborns for the first couple hours or days after birth. It is a blood vessel between Pulmonary Artery and Aorta that allows blood to bypass the lungs and flow back to the body.

Since the lungs do not work in unborn yet babies and the oxygen is provided from mother's placenta, there's no need for the blood to go through the full pulmonary cycle, the blood flows from Pulmonary Artery to Aorta and to the body. This vessel usually closes on its own within the first couple hours or days of baby's life outside mother's womb.

As I have already said, it is a normal condition, but rarely it happens that this vessel doesn't close on its own and then the normal condition turns in to a heart defect that will require treatment.

How is PDA discovered?

When blood flows back from the Pulmonary Artery to the Aorta it causes heart murmur that can he heard by a pediatrician during initial exam. If the murmur is still present couple days after the baby was born, an echo (echocardiogram) may be required to confirm sill open PDA.

Premature born children can easily get really sick from PDA, which would be another indication that something is wrong.

In case PDA did not close on its own or is large and makes the baby sick, there are couple possible approaches.

Depending on the size and length of the PDA, small coils may be placed in the PDA using a cath in the Catharization lab through a large vessel. The coils will help the PDA to clot and close.

It this option is not viable, there's medication that could be used to help the PDA close. If the medication doesn't work or is not a viable option for the patient, a surgical intervention may be required to close the PDA.

Here's a picture of the PDA. This vessel is not present in healthy heart couple days after brith:




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Transposition of the Great Arteries (TGA)

Transposition of the Great Arteries (TGA)

In Transpotition of the Great Arteries both, Aorta and Pulmonary Artery are transposed (inverted) and arise from the oposit ventricles. This is a cyanotic congenital heart defect (condition existing at birth) usually detected within the first hours or days from birth.

When TGA is present, there is a deficit of highly oxygenated blood in the body, since deoxygenated (poor in oxygen, blue) blood is being pumped from the Right Ventricle (RV) back to the body through Aorta, which raises from the RV instead of the Left Ventricle (LV).

On the other hand, the rich in oxygen blood (oxygenated, red) coming from the lungs to the LV is pumped back to the lungs through Pulmonary Artery which raises from the the LV instead of the RV.

The baby is not affected by the TGA before birth and may no be affected for some time after birth due to 2 natural conditions.

First is an opening between the atria, the two upper chambers of the heart. This hole is called PFO, Patent Foramen Ovale.

The second is a blood vessel between the Pulmonary Artery and the Aorta, called PDA, Patent Ductus Arteriosus. Both of them allow mixing of the oxygenated and deoxygenated blood while in utero and usually close on their own soon after birth.

One they close, the poor in oxygen blood will be flowing back to the body.
This can be postponed for some time by performing a Rashkind Balloon Septostomy. A catheter with a tiny balloon is inserted to baby's heart through the big vein in baby's groin, led through the PFO, inflated and pulled back through the PFO to enlarge it allowing more blood to mix. The baby will still be blue, but less blue than prior the procedure.

A surgical intervention will eventually be required. The most common procedure is Arterial Switch also called Jatene operation (after Brazilian surgeon Adib Jaten who as first successfully performed dr. Mustard's arterial switch procedure.

During the Arterial Switch the Aorta is cut above coronary arteries and Pulmonary Artery is cut at the same level. Then they are literally switched and sewn respectively the Aorta to the base of Pulmonary Artery and Pulmonary Artery to the base of Aorta allowing for the proper blood flow.

The whole between the atria created during the Rashkind Ballon Septostomy is also closed during this operation by a Gore-Tex patch sawed over it.

About 30%-40% of children with TGA also have VSD and Sub pulmonary Stenosis They both are corrected during the Arterial Switch.

In case severe Pulmonary Stenosis the Rastelli's procedure is performed. A conduit (tube) is placed between the Right Ventricle and Pulmonary Artery to bypass the narrowing, obstruction and at another tunnel is created between the Left Ventricle and Aorta to allow blood flow and close VSD.

All of the above are open heart surgeries during which heart is stopped.




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