Good Morning!

I was up early this morning, it has been hard getting in to a routine with the littles and getting ready before they make their appearance  in the morning. I have found that I must get up, ready and have my coffee time with Jesus in the morning before the littles get up. If all of that happens before anyone opens their eyes it is a FABULOUS day!!! This is my job, being a mom with many hats. A job I would not trade for the most prestigious job on earth! I have found the best way to do my job well is to start it off right. So today, as they last big headed out the door and still no sign of any littles open eyes, I thought I would post some happenings from the last 24 hours.

Ivy has some things she just loves now, and we try to do the things she loves whenever she is awake! She loves bike rides!!! She loves walks outside in her stroller! She loves water anything water related!
I put her on the floor with a mixing bow of water, a few pieces of play food and a big mixing spoon and she is happy for a very long time. She usually ends up with her tiny feet inside the bowl!
 We are so excited that today is the official day that she can actually be submerged in water so no more open drain, running water baths. Today we will plug the drain, woo whooo! 
She loves birds! So we went to feed the ducks yesterday evening and Lexi caught 3 fish!!! She loves her lentils made by the sweetest gal ever, Chris Hart!!! She eats them every day. Only about 5 bites at a time but I just offer them up all day and even when she shakes her head no, she still can not resist taking a few bites :)
She loves baked potatoes with a little salt. Again, just a bite or two but we eat all day haha!
She loves to cuddle with mommy! I mean loves it! I don't know how I ended up with 2 babies that are so affectionate and lovey? (well, I guess I do, thank you Father!) I sure am grateful! Both raised in very different orphanages and very different situations, but both so connected and attached!
Eating a bite at a time, just the things she agrees to, and just a bite or 2 has become the norm around here. I have adjusted to the all you can eat buffet that resides in my kitchen from 9am-7pm and it just seems, well, normal now. 


Many of you have been concerned by Ivy's diet and have had questions in regards to the fluid restriction. I will share again what is going on with all of that.



swalowing dysfunction and pulmonary aspiration often occur in patients receiving prolonged ventilation. 


Even more chance of this if the child was ventilated multiple times. (thus the reason I always wanted her off the ventilator and sunk with fear when she was put back on the ventilator.)


And... damage is even more probable if there was an emergency ex tubation followed by re intubation as happened to Ivy after her diaphragm plication and pacemaker placement.



When a child aspirates refluxed food or fluid that has been 


mixed with stomach acid (i.e., aspirated coming up) it can 


likely cause an aspiration pneumonia or damage the lungs. 

Fat: Food or liquid containing fat molecules  is more 


dangerous to the lungs, and may trigger pneumonia even 


faster.  This is because the lungs are used to handling water 


in the air we breathe and can release it more easily than a fat 


which is foreign to the lungs.


Ivy aspirates when she drinks fluid that is not as thick as very 


thick honey. She then sounds like a bad connection on the 


radio when she breathes for a very long time. And it hurts her. 


She can NOT have fluids. Even milkshakes or things thickened 


with anything that has the potential to melt are very 


dangerous for her.




Ivy is on a NO FAT Diet. She can have up to 5 grams of fat a 


day, but since some things have .05 grams of fat and 


anything with less than .05 grams of fat is considered fat free,


we just keep her away from anything with more than .05 


grams of fat. Always!


Why?????


Ivy has Chlyothorax. 


This is a type of pleural effusion. It 


results from lymphatic fluid (chyle) accumulating in the pleural 


cavity.

Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. The most common causes arelymphoma and trauma caused by thoracic surgery.

Chylothorax usually results from diseases that cause obstruction to the thoracic duct, preventing lymph from draining normally into the venous system.

Ivy's was caused by them accidentally cutting a lymph node during her pacemaker placement and diaphragm plication. The diaphragm plication (surgery to correct her paralyzed diaphragm) was necessary  because they accidentally cut a nerve when they performed her open heart surgery to corrected her heart defects. All of these complications are a bummer and make my heart break for my girl, but please know that her heart is just the size of a walnut, her organs and her body, ARE TINY!!!!! Our doctor had so much to correct in that 13 hour window. So much going on with baby girls heart, much of which we understood may not be correctable. But by the grace of God and the leading of the His hand on the hand of our surgeons hands, our baby has a corrected heart defect! Corrected, working, blood pumping heart!!!!!! We are so grateful for this and way too grateful to let these current difficulties turn our eyes from the gifts we have already received!! 

 So here is what we were told~

If the patient is on a normal diet, the effusion can be identified by its white and milky appearance, as it contains high levels of triglycerides. Ivys drainage from her chest tube was milky :(

The condition is rare but serious

Since the mechanism behind chylothorax is not well 


understood, treatment options are limited. Drainage of the fluid 


out of the pleural space is essential to obviate damage to 


organs, especially the inhibition of lung function by the counter 


pressure of the chyle. Another treatment option is 


pneumoperitoneal shunting (creating a communication channel 


between pleural space and peritoneal cavity). By this surgical 


technique loss of essential triglycerides that escape the 


thoracic duct can be prevented. Omitting fat (in particular FFA) 


from the diet is essential. Either surgical or chemical 


pleurodesis are options: the leaking of lymphatic fluids is 


stopped by irritating the lungs and chest wall, resulting in 


swelling and closure of the pleural space. The medication 


octreotide has been shown to be beneficial and in some cases 


will stop the chylothorax after a few weeks

We pray that by following the very strict NO FAT diet, Ivy will

not need further surgery. Will you join us in prayer for that?

Off to wake the littles and head to the doctors! It's a GREAT 

DAY!!!!!!!!!!