Sofia, recovering

As of last night, our daughter Sofia, now over 7 weeks old had the following: one PICC line tube delivering HAL and lipids nutrition into an artery in her left arm, one nasogastro feeding tube through her nose to her intestine just past her stomach delivering monogen (a special formula), one sump pump tube to her stomach pulling out air which is brought in by her CPAP breathing assistance machine delivered via a mask over her button nose. Hm, what else...oh yes, the sensors, leads attached to three places on her abdomen, another on her foot, keeping constant monitoring of her heart rate, respiration rate, and her oxygenation.

And still we hold her. I pull up my nursing tank and peel down the nursing top and hold beautiful Sofia to my bare skin, skin to skin. It feels remarkably right, I kiss her head over and over faster than I can take breaths, and I somehow shiver with warmth. It's euphoric, being close with her. She is perfect.

With all of these tubes (this doesn't include the two chest tubes she's had in the past as well as peripheral IVs) and all of this intervention, I'm very thrilled to say that the last week has brought some real, consistent recovery. Sofia is doing so well, and I feel like I can finally envision home. Up until recently, it was two steps forward, one step back. We're hoping it's just forward this time.

Sofia had major chest surgery on her fourth day of life, a small little nugget of a baby. The esophageal duplication cyst (they confirmed it in biopsy after the surgery), this thing that ruled our lives, was removed from her chest. We hear it looked like a big sausage; pictures yet to be seen have been saved for us. It was very large, the largest one the surgeons have ever seen and even that they are aware of. When they cut the first incision into the right side of her chest, the cyst ballooned out through the hole. And they removed it straight from her throat down past her diaphragm.

The recovery required patience. Sofia was intubated for several days (it's painful to see your child intubated, raspy screeching because tubes interrupt function of their vocal chords), she had a chest tube to remove excess fluid, and she was under serious sedation and painkillers. But her recovery was moving very well, and I thought our NICU stay might fall within two weeks or so.

And then they discovered that she had chylothorax, a leak in her thoracic duct which is not uncommon with chest surgery. That meant another chest tube, no feedings (the fat in breastmilk exacerbates the leak), and long days just waiting for the leak to drain.

And once that felt done (please let it be really done), they saw through clinical evaluation that Sofia was breathing quickly, working hard to breathe, and through CT scan they learned that part of her right lung was deflated. Since then, she has had breathing assistance devices to blow pressured air into her lung to fully inflate it.

In the meantime, they saw that she had an infection and treated her for pneumonia.

And now, finally, 7 weeks in, her xrays are showing a fully inflated lung, she has just started "eating" again (a fat free formula for now, my breastmilk skimmed next), and clinically she's in excellent shape.

She has never felt like a sick baby at any point along the way, always a bit ruddy, curious, eye-batting, and so very strong. Her chicken legs can kick! I watched her tear off her oxygen mask once in an annoyed fury. She has been called rambuctious by nursing staff. She never cries except when she is in serious pain. I watched her get stuck with six needles in one day and she never shed a tear while I gushed waterfalls.

The nursing staff and docs have a special affinity for her. When they come and do rounds to plan her care for the day, they often will come over and coo first. Several have said to me, don't tell the others, but we really think this baby is the bee's knees. The doctor who drained her cyst while she was still just a fetus came by and said, this one is really a looker. It's true, some babes come out needing a bit more time to settle their faces. Sofia came out, even though early, ready to take a bow.

While we never thought we'd be in the NICU this long, the doctors remind me that this level of attention to Sofia's breathing and her right lung was no surprise to them. She faced what they call a triple whammy: huge cyst in chest compressing lungs all through in utero development, big interference through major chest surgery, and chylothorax/pneumonia/general fluids in her lung that shouldn't be.

We have tried to operate with as much patience as we can muster, but there's nothing normal about loving and caring for your child in the NICU. But I don't feel like crying right now, so we'll leave that post for another time. Those posts, really. It'll take a few to get all of that out. But they will come eventually.

For now, I can just thank my lucky stars for the following: the most wonderful family and friends whose prepared meals, comforting texts, inquiring emails, and cards of congrats have provided us with a net of love that I let myself fall into when it's time to jump out of reality. And also for the following: Sofia's continued recovery and good health, her big eyes and her pointy chin (it's mine! yes!), her stillness and raised eyebrows when she hears my voice, her powerful suck, her evident wonder and interest in things around her, and her future outside of the NICU, in sunlight (those lucky children that have been frolicking in it for days), in our arms, in my arms, feeling my kisses, returning my hugs.