Madison's heart surgery went well, but she had some complications that I'm asking prayer for.
I'm starting to type through tears here, combined with lack of good sleep and a headache from you know where ... so I hope this makes sense and doesn't appear to be complaining . I know so many families have gone through so much more than we have.
First - here are a few happy pics of our Bunny from surgery day (Tuesday).
Just out of surgery - the nurses didn't even know we call her Bunny and look what they placed beside her :)
The incision she had was through her back and under her shoulder. While not as complicated as open heart surgery, the doctors have explained that the recovery is more painful because of the muscle that was cut and where it is: any time she breathes or moves, that incision is painful. Combined with this, she has a chest tube coming out from under her arm to drain off excess fluid.
This fluid is supposed to be clear. Instead it is milky white, which means she has developed a complication called chylothorax. Basically her thoracic duct was damaged during surgery - not because of any error, but simply because this is how that tissue paper thin duct can react when it is exposed. The fats that go through this duct (chyle) are leaking out and that's what we are seeing in this bulb. This is called chylothorax. Sounds like a character in a Dr.Seuss book to me, but unfortunately it's not so innocent.
Sometimes the thoracic duct can heal itself by placing babies on a low fat diet. Since Madison receives my breast milk in a bottle, the way to do this is by skimming my milk. This is a simple process that requires my milk to sit in the refrigerator for 24 hours while it separates into layers. We use a syringe to pull the low fat milk from the bottom of the bottle and then we mix it with a special low fat liquid formula that has any added nutrients she needs.
The problem is a) Madison has been in a lot of pain despite four kinds of pain medicines and is having trouble wanting to eat . And b) the formula that is mixed into my milk tastes awful. A dietician got us some Starbucks vanilla (go figure!) to mix in to mask the flavor, and for a few bottles this helped.
Yesterday, after a long day trying to get her pain under control, and trying unsuccessfully to get her to drink, she became dehydrated. So much to say but in a nutshell, it was an awful day. I can't tell you how much it broke my heart to see my baby pale and hurting and writhing in pain.
Her little arm is mottled and bruised from the arterial line and blood draws...
lots of nurses and doctors have come in to look at it and make sure she isn't developing any clots.
After an eternally long day .. lots more to say but I'm keeping it simple for time sake.. Madison had a feeding tube put in and started receiving my skimmed milk and the formula that way. She had iv fluids through the night as well, and this morning she is looking a little bit more like her after-surgery self. She's definitely still in pain and not her "normal" self, but a marked improvement from yesterday. THANK GOD.
I have to say that through all of this heartache we have felt the tangible presence of God and His grace - we feel people praying for us and we know that's what is holding us up.
So here's where we are at today : the low fat diet does not appear to be reversing the thoracic duct damage at this point. Right now Madison has orders for sedation and a central line to be put in, and her doctors are putting her on NPO for seven days. This means she cannot have any oral feedings and will receive all of her nutrition through that central
line. This is not pleasant for babies we are told - even though she is receiving nutrition she will think she needs
to eat. The reasoning for the NPO is so we can bypass that thoracic duct with her feeds and give it a chance to heal itself. If at the end of seven days she is still leaking milky fluid, she will need surgery to repair the duct.
Obviously we hope this doesn't end up in another surgery. All of our children at home (two hours away) are really missing us, and we them.
Your prayers are so greatly appreciated during this difficult time. Please pray for the thoracic duct to heal on its own so we can avoid surgery. Please pray as well for our Bunny to be out of pain and make it through a week of no oral feeds. Please pray for our children at home... we are all missing each other so much. Sam and I could use prayer as well.. I feel funny asking for it when Madison is the one hurting, but we really do need God's help.
I will try to update here as I have time. Thank you from the bottom of my heart for all your love and prayers for our girl .
Posting a happy picture of Madison and waving to ourselves in the future ...
Much love, Patti