Trache and New Crib !

As we knew might happen, Milagros was returned to the Ventilator after two days. She worked so hard those days to breathe more on her own but we could also see that she was really struggling. As parents we always hope for the best so it's no surprise that we took the news with heavy hearts.  She is such a fighter and I believe she really wanted to succeed but her lungs wouldn't let her.  At her last echocardiogram there was some improvement in the pulmonary hypertension,  it had dropped slightly, but for Milagros to be extubated she has a long way to go.  There are two other big updates : 1) Milagros has a spiffy new crib,  its a Pediatric crib and feels alot more like a real crib, it also allows us alot more room to interact with her !:2) the pulmonoligists have set up a tracheal surgery for next Friday,  this is a big deal and would replace the annoying tube in her mouth.  The tracheal tube would deliver oxygen through her trachea and allow full use of her mouth. This is also significant because if she can show improvement on the trache there is a good possibility she can come home in the next couple of months. 

Ventilator vs. Nasal Cannula

Milagros with her new Nasal Cannula 

The NICU jungle

With Milagros, we've learned to moderate our excitement during any milestone because with CDH and omphalocele babies there are always steps forward and often steps backwards. But today we couldn't help but wear our excitement on our sleeves when Milagros was removed from the ventilator. Since the day Milagros was born she has had a large, invasive, hard plastic tube run from her mouth to the top of her lungs. Milagros clearly hated this tube and her tongue was never able to fully extend out of her mouth because the tube was always blocking it. Today, she hasn't stop spitting her tongue in and out like a lizard and relishing her new found freedom of all of her mouth functions. The doctors, nurses and RTs have inserted a Nasal Cannula which is a supplemental form of oxygen support that is far less invasive and is inserted into her nose. Nurse after nurse came by to celebrate this milestone with Milagros as word quickly spread throughout the NICU. Milagros has a long road ahead, and the doctor was quick to remind us that babies often have a tough time with the transition and are forced to go back on the ventilator. Milagros has been breathing with the support of a ventilator since the day she was born, today at 10am when the vent was removed she took a big gasp, wasn't quite sure what to do and instinctually started breathing, again surpassing the expectation of her doctor. Mom and Dad's motto in the NICU is day by day ! We will pray for Milagros tonight that she be able to handle this big transition