Anna's First ER Visit

On Monday, our little Anna gave us quite a scare. At 4pm she vomited an entire bottle of milk onto Cliff. (I remember back when she came home from the NICU and she would spit up and I worried she was vomiting. NOPE! This was way worse.) When I got home at 5pm he had calmed her down and gotten her to sleep in our bed. I took her temperature in her ear and it was a little low, between 96.7 and 96.9 degrees over several tries. I let her sleep a bit longer and when she started stirring, I slipped in beside her to see if she would nurse a little bit to get some fluid back in. She did, and we were relieved. She went back to sleep and we grabbed some dinner. She napped longer than usual, so this time when she stirred I decided to give her a bath. What I had read online regarding a low temperature offered similar instruction for if she had a high temperature - a warm bath and warm towels. Plus, she stank!

When I got her in the bath, she was very weak and lethargic, reminiscent of her sleepy newborn days or the hours after her surgery when she was coming out of anesthesia. I also noticed how pale she was. I was then convinced that something was really wrong. After quickly soaping her up and rinsing her off, I picked her up and she vomited all over me. I decided to call the after hours triage for her children's hospital network.

The woman who answered took my information and said a nurse would call within the hour, but probably sooner. However, we had already decided to take her to the ER since were concerned she had contracted a virus that would affect her lungs. We packed overnight bags and headed to the car when the nurse called me back. She didn't seem too concerned since it had only been 3 hours since the first incident, but I realized I forgot to tell the triage woman about Anna's hydrocephalus and VP shunt and when I mentioned this to the nurse, she said to go ahead to the ER at the children's hospital.

If there's one thing we now know about having a VP shunt, it's that vomiting = red tag in triage at the ER. Our minds weren't really considering the possibility of a shunt malfunction because we feared she picked up something over the weekend during her first road trip (more on that later!) but it is true that with infants, vomiting is a telltale sign of a malfunction and we can never be too careful. 

Relieved to see 100% oxygen saturation

At the hospital, Anna vomited again but we were relieved to see she was breathing fine and had a normal temperature. The doctor decided to go ahead with a head CT scan and x-ray to check the shunt placement and ventricle size. At this time Anna was a little alert awake but still very drowsy. She made it through both procedures without making a sound. The CT scan was tough for me and Cliff since we were draped in heavy vests to protect ourselves all the way up to our throats but there we were scanning our precious little baby's head, again, but we know the necessity outweighs the risks.  

Waiting for our next procedure

The scans showed that not only is the shunt in the right place, but her ventricles are even more decompressed than they were at her last MRI in September! We were relieved to rule out a malfunction, but still no answer on the vomiting. The scans showed some fluid behind her left eardrum, which is actually a relief since she had some trouble in that ear during her checkup with the audiologist last week, but it wasn't dark or indicative of an infection. They decided to do a urine culture (by far the worst procedure of the night!) to rule out a UTI. This also came back clear. By that time, Anna had begun to perk up and was demanding to nurse. We did, and she held it down!

Around 10pm we were told we could go home and to follow up with our pediatrician in a week and come back if her symptoms resurfaced. By the time we got her home, Anna was back to her normal self. You'd never know she spent the last few hours in the ER! We are incredibly relieved that this was a false alarm and as sad as we are that Anna had to endure more testing, we know we did what we had to. It is a little daunting to know that we will have to go through that every time she shows sign of illness whether it ends up being a quick stomach virus, a cold, or a bad bottle of milk. However, Anna is a survivor and totally worth the effort!

Statistics

I've always been very good at statistics. I aced the course in high school, undergrad, and graduate school. What I didn't fully grasp while learning about probability and significance is this: Statistics mean nothing to the individual.

According to the March of Dimes Foundation, stillbirth occurs in about 1 of 160 pregnancies. Common causes include placental problems, infections, and umbilical cord accidents. About half the time, the cause is unknown. Such is the case with our Patricia. We consented to an autopsy but no cause of death could be found. We lost.

Also according to the March of Dimes Foundation, 1 in 8 babies is born prematurely. Common causes include infection, bleeding, and fetal stress. Anna's birth was actually due to a condition called incompetent cervix, where a woman unknowingly begins dilating and eventually goes into labor. According to the American Pregnancy Association, this condition happens in about 1 out of 100 pregnancies. Risk factors include previous surgery on the cervix, damage during a difficult birth, and a malformed cervix or uterus from a birth defect. None of these risk factors apply to me. We lost.

Though studies on micro-preemie survivor rates differ, we knew the chances were up to 85% that Anna would survive birth at 26 weeks. We won!

Although neonatologists are understandably hesitant to make any kind of predictions about a micro-preemie like Anna, she started out following the normal course for a baby her age. When Anna was 5 days old, our "luck" ran out. Micro-preemies like Anna are at high risk for intraventricular hemorrhaging, or bleeding in the brain. According to a 2003 study published in Pediatrics, the official journal of the American Academy of Pediatrics, approximately 5% of infants have bleeds as severe as Anna's, and only 5% of all bleeds happen as late as hers did. We lost.

The same 2003 study found the mortality rate of infants with severe bleeds to be somewhere around 75%. We won!

A 2008 study published in Pediatrics found that approximately one third of infants with bleeds develop hydrocephalus, or a buildup of fluid in the brain. We lost. Of these infants, 15% require shunts to permanently re-route fluid. We lost.

As Anna grows and develops, we cannot escape statistics. A 2005 study in Pediatrics found that 60% of children in the study with severe bleeds had cerebral palsy, 70% had mental retardation, and 92% required special services. In addition, the Hydrocephalus Association reports that an estimated 50% of shunts fail within two years and 25% become infected and require revisions. With our ability to defy odds, Anna's future is wide open!

To sum up: Statistics mean nothing to the individual. They neither frighten me nor offer me hope. If someone comes at me with statistics, I am likely to laugh or cry, depending on my state of mind. In a way, this is somewhat freeing as it allows me to have fewer expectations.  Research is necessary and important and will surely guide our treatment plan, but we will move forward on this journey and focus on Anna as an individual and our family as unique.