AUTHOR: Carolyn Savage | POSTED: 01/26/15 3:17 PM
We’ve been home now for nine days. Nine days! Nine days without listening to the alarms of hospital monitors and hearing the cries of sick children. Nine days of waking up to the whimper of a hungry baby instead of waking up to the whimper of a baby being examed by a resident before morning rounds. And, most importantly, nine days of continuously improving health for our baby boy.
Dare I say we are turning a corner?
I’d love to report that Nicholas is completely better. I can’t. I had no idea his recovery could take months. That being said, he looks and sounds better than he ever has.
I’d love to also report that Sean and I are feeling more comfortable regarding his diagnosis. I guess we are…kind of…but there is still a lot of uncertainty. That makes us nervous. We have been told multiple times that we may never know exactly what caused Nicholas to get so sick. The only thing we know for sure is that it wasn’t just one thing. It most likely was a conglomeration of little things that came together creating the perfect storm.
Here’s what we think may have been the contributing factors to Nicholas’ illness….
- Nicholas has a grade one laryngeal cleft. It’s not significant enough to warrant surgical correction but it probably was a contributing factor to his illness.
- Nicholas has a silent aspiration causing him to aspirate breast milk into his airway while eating. It wasn’t severe in that he only aspirated one out of twenty swallows but it was enough to warrant thickening his expressed breast milk in order to prevent further aspiration.
- Nicholas has a possible immunoglobulin deficiency of IgG. This diagnosis is a bit uncertain because even though his IgG results were low, they could have been suppressed by the presence of infection. We are retesting his IgG levels in two months, but if he does have an IgG deficiency his immune system would have been less able than a normal newborn to fight off an infection. (If he does have low IgG it is easily treated.)
- Nicholas took a giant gulp of amniotic fluid while exiting the womb. It was aggressively suctioned but *may* have started this whole mess by causing the pneumonia.
- Nicholas was a c-section baby. The significance being he didn’t have the opportunity to squeeze through the birth canal which helps a neonate rid their lungs of fluid from the womb.
Given those five facts our medical team has determined two things…
1. Nicholas has an under treated pneumonia excerbated by repeated premature withdrawal of IV antibiotic treatment during multiple hospitalizations.
2. Over time, the pneumonia morphed into bacterial meningitis. Yup. You read that right. BACTERIAL MENINGITIS. This determination is supported by the fact that Nicholas had three lumbar punctures over the course of a month that all came back with elevated white blood cell counts…which IS meningitis. The question was whether it was viral or bacterial. The infectious disease team at Rainbow Children’s decided it was indeed bacterial because of the severity and duration of illness. They admitted that his case of bacterial meningitis was not typical…apparently Nicholas forgot to read the medical books inutero…but nevertheless they were going to treat it as bacterial meningitis. (Technical information…Usually bacterial meningitis is diagnosed when bacteria from the spinal fluid grows in a culture. Nicholas’ cultures never grew anything and that stumped the infectious disease doctors. After five days of trying to figure out why Nicholas was so sick but the cultures were negative the chief of infectious disease decided he didn’t care any more and treated Nicholas for it. He told us we’d have a more definitive answer about the bacterial meningitis if Nicholas responded to treatment. And…he did. Thank God!)
There are a few outliers as well. We’ve written a lot about a condition called Primary Ciliary Dyskinesia. Up until our hospital stay at Rainbow Babies and Children we were operating under the strong suspicion that Nicholas had PCD. Now that he is responding to his current regimen of antibiotic treatment we aren’t so sure. We did have him undergo some genetic testing for the condition. Hopefully those results will come back soon.
As for right now we are thankful that Nicholas seems to be developing normally. He weighed in at 11 pounds 7 ounces last week. The fact that he’s managed to gain more than four pounds since birth is promising. Hopefully we can stay on a positive trajectory.
In the meantime we are trying to restore some normalcy around our home. Slowly but surely our other children are adjusting to having their baby brother home. Of course, PICC line maintenance, around-the-clock aerosol treatments (Nicholas gets ten different nebulized medications a day), combined with the beeping of his pulse oximeter and the hum of his oxygen concentrator (he’s only on a wee bit of “blow by” oxygen at night) don’t exactly add up to the typical newborn experience.
I guess this is our new normal and it’s a heck of a lot better than where we were for the first two months of his life. We’ll take it.
Sean and I continue to be incredibly humbled by the sheer number of people who’ve held Nicholas and our entire family in their prayers. I don’t get out much these days but in the few outings I have had I have encountered all kinds of people who have been thinking of us and our sweet boy.
We are so thankful to everyone. We wouldn’t be remotely close to where we are today without the love and assistance from so many.
Hopefully, some day soon this little corner of the internet will return to what it used to be…or something close to it. In the meantime, thanks for sticking with me. I’m sure I’ll be back to story telling and laughing at our family antics in no time.
In the meantime, I’m settling for a little smile with a side of good health.
**The images in this post were taken by my very talented friend, Jennifer Mott. You can see more of her photography on her website here.