Sunday mid day Update 3/11/12-Good & Bad

Starting another day in the NICU-

Sara pumped several times in the middle of the night, and her milk flow is doing well.

We had a little scare last night....We ordered Thai food from a local place in Denver, as the hospital food has gotten really old. Go figure. We were sitting in a little conference room and 3 bites into a Thai spring roll, Sara yelped "Oh no, there is shrimp in here!" Sara is very allergic to shellfish, so after spitting out the shrimp, we hoped for no effects. My brain was flashing with poor Sara, her abdomen sore and sutured, puking all night. Luckily, it didn't happen; after our collective blood pressure rose for a few hours, there were luckily no ill effects. Yikes.

The girls:

Ashlyn is status quo-The good news is that the 2nd dose of surfactant has helped and her lungs are looking better. I looked at the Xrays and they show some clear improvement.

The bad news is that she remains ventilated and is not breathing on her own. She had her 3rd round of indomethacin last night (which is meant to close her PDA), and is still draining fluid from her chest tube.
Its pretty clear that she is sick. She is quite a bit smaller than Hanna, and has a fairly complicated situation going on.

                                                               (Dad's hand on Ashlyn)

I guess the newest development is is seems that she has a chylothorax. Its not compeltely confirmed, but that is what they are suspecting. Its a relatively rare situation. Here is the definition:

Congenital Chylothorax (CC) is the accumulation of lymphatic fluid in the pleural space around the lungs. CC is usually a result of blockage of the thoracic duct during pregnancy. Infants with CC receiving regular formula feedings have persistent accumulations of fluid around the lungs because the production of lymphatic fluid is increased tenfold following regular formula feedings.

TREATMENT
Mechanical Ventilation to help the infant's lungs expand fully.
Thoracenteses which is removing the fluid from around the lungs.
Inserting a chest tube for drainage may be needed in some cases with respiratory distress.
Special Formulas (such as Enfaport) that consists of low-fat high-protein milk supplemented with MCT oil is used if the infant is able to take nutrition by mouth, or
IV nutrition combined with drainage of the space around the lungs is utilized.

Hopefully, with conservative treatment, the accumulation of fluid around the lungs resolves on its own, if not, surgical interventions will be considered.


SURGICAL CONSIDERATIONS
Surgical interventions might be considered if the chylothorax does not resolve or becomes worse. Surgical interventions are not risk free and not always successful, especially when associated with a malformed thoracic duct or a thoracic duct that does not function properly, or if infection is involved.Chylothorax refers to the presence of lymphatic fluid in the pleural space secondary to leakage from the thoracic duct or one of its main tributaries.Congenital chylothorax is the leading cause of pleural effusion in neonates.

The hope is that situation fixes itself, and that wherever the leak is will close with increased lung pressure. However, being the "Google Doctor" that I am now, I see that Chylothorax is a very serious problem with 20%-60%  mortality rates. Not much we can do about it, other than stay positive and hope she is a fighter. We've come this far against the odds......You can do this Ashlyn!

Hanna is doing good-She is reacting well to the CPAP machine, and doing alot of breathing on her own...She is liking her breast milk infusions, and they are talking about taking out one or two of her tubes today. They say we might even get to hold her! She is making steady progress right now, and is "right on track" for a 29 weeker....
                                            (Hanna with no Cpap-First we have really seen her face!)

The reality is settling in that this is going to be a long road.....But everyone is tough (Sara is actually alot tougher than me), and we'll take it day by day. Please send prayers and good wishes for both girls, but in particular for little Ashlyn!

Tired but hopeful parents: