Holladay, Alexandra Nichole

[mholladay]

Alex's surgery yesterday was a success and turned out to be a lot simpler/quicker than the doctors anticipated. They were in and out in under 90 minutes. Apparently, the reason her left lung looked "whited out" on the xray was not fluid in the lung but a baseball sized cyst attached to, guess what, her diaphragm. It had folded up on itself like the unzipped wall/door of a tent, and as soon as the surgeon popped it, he was able to unfold the complete diaphragm and stitch it up without needing gore-tex! Weird. The cyst had pushed her stomach, intestines and liver back down through the gap so everything was already in place. Surgeon said he'd never seen anything quite like it.

She's needing lots more morphine/versed today for pain (expected) and may need another chest tube to keep the lung clear (also expected) but overall she looks GREAT considering what she's been through.

Thanks to everyone for your continued support.

[Chris and TracyMeats]

So happy to hear the surgery was a success and no patch needed!!! I have never heard of a cyst like that either. I have heard of more of a bag surrounding the organs up in the chest cavity.

So glad she is making progress, off of ECMO and has had her surgery. Praying for strength for Alex!! Tell that sweet baby girl to keep fighting.

[freedom]

Thank you for the update. What wonderful news. She is truly doing a great job. More love coming your way from Maryland. Keep up the great work sweet little girl. We are loving reading your mom's updates.

[ReneeB]

Great to hear!!

[mholladay]

Well, one week post-op, Alex has developed a condition called chylothorax. That's the reason for all of the fluid. Anybody else have this problem with their CDH'er? They have stopped her breast milk feeds and that seems to be slowing the fluid output. Going to try giving her some alternative formula next to see if that resolves the problem.

[Chris and TracyMeats]

My son had chylothorax and it can be common in CDH babies. We had to go to fat free feeds for some time and then worked our way back up to full fat feeds and using formula. The switch to the formula did help resolve my son's chylothorax and once we got it resolved he was fine and it never came back. We also had several chest tubes to help drain the fluid at different point in his recovery.

Praying Alex's chylothorax will resolve and she can get back on track with healing. Stay strong Alex!

[mholladay]

Thanks Tracy. I know we're over the big humps (ECMO, surgery) but learning about this chylothorax was devastating knowing that there's not much that can be done to fix it except to wait it out. They couldn't positively diagnose it for the first week because certain indicators didn't match up, but once they started giving her breast milk via NG tube, the fluid turned whitish and then they knew. They stopped all feeds yesterday and today, the fluid output is clear again but still heavy. They are going to wait a week -- suspending all feeds except for the basics she's getting via IV -- and see what happens.

[Chris and TracyMeats]

Alex has overcome some very big bumps and is so strong!!! She is a fighter!!

Definitely sounds like chylothorax from your description. Give her body time to adjust and now the doctors know what is happening, they will help her get back on track.

Tell her to stay strong...sending her love and prayers from Wyoming.

[ClairMaher]

Charley had chylothorax and was put on a milk called monogen . Smelt like potatoe starch . She had this and ton x I hope is ok with your little one x

[AmandaPlakholm]

Your daughter has definitely had some hurdles but sounds like an amazingly strong girl. Had a flood of emotions when i read your post about getting to hold her for the first time. Such an unforgettable feeling, your little girl will be in my prayers.