So, I’m at home gathering our stuff and hubby Chris is in the NICU with Katie. They have intubated her and placed an arterial line in her jugular, inserted a catheter and various other tubes, etc.
I head back to the hospital…I can’t remember who drove me there. Chris brought me to see Katie for the first time since all of the medical intervention. He had taken a photo of her showing the breathing tube, just to prepare me, but I couldn’t look at it. After I gowned up and walked back into her NICU room (she was still quarantined at this point) I saw her, lying so tiny in the big bed, with a million tubes, connectors and about 12 medicine pumps at her side.
I had a strange reaction…in a way I was glad that the doctors had finally DONE something and it somehow showed me that they were taking this very seriously. I weirdly blurted out “wow, she looks great” in a booming voice. I’m sure her nurse thought I’d lost it. I went on and on about how peaceful she looked and her colour was better, blah, blah, blah. I know that my brain was trying to process everything and this was the best I could do for idle chatter at the time.
Chris told me that he thought I was going to flip out when I saw her and I said something like “no, no she looks fantastic”. You’ll see how crazy this statement will when you see her photo at the end of this post. * Just a warning that it’s disturbing if you haven’t seen other very sick babies. She’s very puffy.
So, at this point they told us that it would take up to 72 hours to grow out anything from Katie’s lumbar puncture. 72 HOURS!!!?? In the meantime they had her on high doses of 2 broad spectrum antibiotics, hoping to slow down whatever was attacking her little body. She was also on a paralytic, lots of fluid to try to control her blood pressure which was very erratic, lots of morphine and other pain meds.
Usually in the case of an emergency I take control…memorizing meds, researching online, asking a million questions, etc. Maybe I’m a bit type A…Chris lovingly tells me I’m AAAA. :) But because it was my little girl I couldn’t do any of these things. Chris ended up taking control of the information for the first few days of her NICU stay. I would ask him questions and get updates from rounds, which Chris attended. I couldn’t stand hearing them talk about Katie like she was a number during rounds and I didn’t want all of the worst case scenarios that they were throwing around.
The first 2 days in the NICU were spent trying to stabilize her heart rate and blood pressure with meds. As a result of the massive amounts of fluid she was receiving and the fact that she was VERY ill, her body couldn’t process the fluid properly and it basically leaked out of her cells and into her tissue. That is why you see a lot of sick babies looking extremely puffy and swollen. Once this happened the next hurdle was to try to get the fluid “off” with diuretics, which wasn’t going well. Her blood pressure would drop then sky rocket. On the second day they started doing the first of many EEG’s as well as ultrasounds of her head/brain. Obviously the doctors knew, or strongly suspected at this point, that it was Meningitis but wouldn’t tell us until the cultures grew out. (I later found out that when spinal fluid is pulled from a person with Meningitis it is very cloudy, so they would have suspected during the first night)
The hospital had a “parents room” right outside the NICU for parents of gravely ill children to stay overnight. It had a couple of pull-out chairs and a tv. We ended up sleeping in this room in shifts for 10 days. THIS was an amazing help as I couldn’t imagine not being able to stay close to her once I came back to the hospital.
At about the 48 hour mark they officially told us that Katie had late-onset GBS Meningitis. This form of Meningitis is very rare...it needs two things to happen in order for it to attack the body… exposure to Group B Strep and a momentary weakening in the respiratory or digestive system. GBS is carried harmlessly by 30 – 40% of the population. The bacteria must first get into your body and then it has to cross through your respiratory or digestive system “wall” to start colonizing in spinal fluid and eventually into your brain. This is the same GBS that all pregnant women are tested for (here in Canada).
We were asked to talk with a team from “infectious diseases” and they were surprised to hear that I was negative. Then they assumed it was a false negative and that Katie probably picked it up during child birth. When they found out that Katie was a “dry” (my water didn’t break) c-section they again were surprised. We later found out that the chances of Katie picking up GBS from a source other than me while I was pregnant was about 1 in 10,000 or less. It was a total fluke, bad luck and a terrible accident. In the end they suspect that she was exposed at the hospital shortly after she was born. Likely by cross-contamination through a nurse via another mother who was positive. Then 18 days later, for some reason her body let the bacteria "through" and after this happens it becomes extremely aggressive. Chris really did save her life that night by taking her tempterature "just to be safe". She wouldn't have lived through the night.
I can’t even look at the hospital where she was born when I drive by it now. It used to be a place that was full of amazing memories of her birth. When I see it now I just think that it’s an extremely dangerous place for the many babies that I know are born there every day and every night.
Once I convince Chris to have another baby (I’m working on it) we will be going to another hospital and so help me NO ONE will be touching our child without pouring a bottle of antiseptic on their hand in front of me. But I'm getting sidetracked again….sorry.
After telling us that it was Meningitis they described to us what it was doing to her body. The antibiotics usually take care of the bacteria fairly quickly (within days), but once the bacteria dies it turns into a lethal toxin and continues to travel to the brain. The toxin causes bleeding in the brain, which in turn blocks oxygen from reaching brain cells and if deprived for any length of time, brain cells start to die and never re-grow. The overall trauma that her little body was going through could also produce strokes, multiple organ failure, heart failure, collapsed lungs, blindness, deafness, lost limbs…the list went on.
No one knew at that time, but I had spent many hours reading and re-reading a long newspaper article that was posted in the hall outside of the NICU about a little girl who, when she was Katie’s age, had a less severe form of Meningitis and made it out alive with “only hearing loss” and “physical disabilities”. They called this a MIRACLE. ONLY hearing loss, ONLY physical disabilities??? !!! I knew what Katie was facing as soon as I heard Meningitis and then it only got worse once I found out it was GBS. I told everyone NOT to read the article (we had to walk by it about 40 times a day)…that it was too depressing and that it wouldn’t help them. I SO wished I had never seen it. Sometimes a little ignorance IS bliss.
Our little munchin...all puffy and very sick. This was not even close to her "puffiest" day in the photo.
To be continued...
