"My Story…" Monday: The Fight to Heal

Once we got through our darkest day, I think we felt a sudden surge of optimism. While it would be incorrect to say that we weren’t still aware of the many risks and challenges ahead for our little girl, for the most part we felt so relieved and triumphant that even little set-backs didn’t really get us down.

I remember the next couple of weeks as a blur of ups and downs. They ran blood gasses (a heel-stick method of blood collection to check all sorts of levels in the blood) every two hours and it seemed like it was constantly fluctuating. C’s ventilator settings ranged from med-high to high, never really dropping to “desirable” levels. Nonetheless, she had been put back on a classic ventilator which meant- hallelujah!- we could hold her again.

On many on my weekday morning visits, the head nurse would usher me back into a tiny alcove off the NICU and show me her chest x-rays from the day. The pneumonia still had a hold of her, though strong antibiotics had eventually knocked out the bacterial infection. We, and the medical team, kept hoping that, now that she didn’t have the blood infection to fight, she would be able to beat down the pneumonia and move on. One important thing to know about C’s infection, however, is that she will forever be labeled as “MRSA positive“. What does that mean for us? Not a whole lot. About a third of the general population and over half of the medical population carries MRSA. It’s so incredibly common. It is not something that concerns schools or daycares or even regular doctors’ offices. All it really means is that, should she be hospitalized, she gets her own room. That’s it.

Anyway, as the days went on, our baby girl’s x-rays started to look a little better. The lungs were clearing and expanding and starting to look much healthier. Despite that, her ventilator settings held steady and a high rate and pressure. I think I was so grateful that she had survived that one devastating day that I convinced myself that it was okay that her settings were high, that we’d worry about that later. But the thing is… the longer a baby is on high settings, the more risk of permanent damage. The doctors knew this well…

I was sitting by C’s bedside, crocheting, when the doctors made their rounds. Being a teaching hospital in a large city, there was a vast pool of neonatologists, fellows, and residents involved. This particular day marked the start of a new two-week stretch and with that came a new head neonatologist on my little girl’s case. Dr. Wincehester introduced himself (by the way, you can see him in our commercial footage on my right side-bar) and immediately told me he was concerned about C’s vent settings. He told me he wanted to try running a course of steroids over a 48-hour period to see if that helped her lungs get stronger. Many women in preterm labor receive steroids before their babies are born; my labor was too short and there was no time.

There were three possible outcomes: she could react badly to the steroids and they’d have to sedate her until they wore off, she could have no response whatsoever, or they could help her lungs get stronger so the doctors could wean her settings. We decided it was worth a shot.

That was Thursday, January 26th. She received her first dose that afternoon. Within a couple of hours, her oxygen saturation started climbing. They began lowering her vent settings.

By the next morning, she was on minimal ventilator assistance. She received a second dose of steroids. That afternoon, her brother’s first birthday, they extubated C. They put her on a C-PAP, which is a type of mask that provides pressurized oxygen. This makes it easier for small babies to draw in the oxygen and, also, helps “remind” them to breathe. Our daughter was still so tiny (not yet two pounds) that none of the nasal prongs fit her. One of the respiratory therapists (RT) bent and trimmed the smallest ones they had to try to make them work.

The moment they put her on the C-PAP and off the vent was a glorious one. The nurses and RT’s were quick to point out that the odds were high that she’d have to be re-intubated however. As disheartening as that seemed, it helped to know that every hour she spent off of the vent was good for her. It helped her lungs get stronger and her airway heal.

Little C. when they first extubated her; Look at that smile!!!

The next day was Saturday and we were having A’s first birthday party at my sister-in-law’s house. It was torturous to leave C there, learning to breathe on this new equipment. But, as all mothers of more than one child know, sometimes you have to make just that kind of difficult decision. We headed out to celebrate this very important milestone for our son…

I called the NICU just about every hour. My spunky little girl proved her strength once again. There was no longer much doubt that she was ready to let go of the ventilator for good. But the C-PAP? Well, Miss Feisty had different ideas…

I’ll tell you about that next week.

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