It would take an entire book to appropriately give credit where credit is due, that is, to God – our good, good Father. Even then, due my limited understanding as a mere mortal, I would not be able to do it justice. Suffice it to say that God is on the move and that God answers prayers. He hears us.

We are beyond thankful for all the prayer warriors interceding on behalf of our family.

The body of Christ has really shown up to show us that we are loved.

Thank you.

We continue to pray for Emma’s brain as I’ve talked about quite a bit already. Some of the things noted from her recent MRI are intracranial infectious manifestations, restricted diffusion, parenchymal reduced diffusivity, ventriculitis, cerebritis, tissue loss, areas of intrinsic T1 hyperintense signal, scattered foci of susceptibility signal drop out, new focus of susceptibility in the left thalamus consistent with interval microhemorrhage, evolving encephalomalacia/necrosis in the deep cerebrum, most pronounced in the basal ganglia…Okay, so I started to list a few things from memory, then pulled up the MRI report to add what I couldn’t remember, and then I realized that I would be just rewriting half of the report is I keep listing the things that were seen. There’s a lot there. I’m basically just saying the same things I said in my last post: Continue to pray for her brain — For the damage already done, the damage continuing now even with the infection under control, and things in the unforeseen future including continued risk of stroke, seizure, respiratory failure, and more. The brain is a magnificent and unpredictable organ; and that can result in both good and bad. We pray for increased plasticity and neurogenesis in Emma’s brain which is the nature of the brain already. Miracles could happen and the doctors wouldn’t even noticed because that’s just how the brain is. Typically, neurogenesis is known to occur only in a few very specific areas like the hippocampus, but research indicates that this may occur in more areas such as the amygdala and hypothalamus. Newborn brains are even more unpredictable yet. Prayer is powerful. Let’s keep praying and give these doctors some more new data for their research. Infectious disease also talked about the small risk of reinfection following discharge which is why he extended her antibiotics to 4 weeks from her first negative CSF culture. I’ve wondered about long term effects from permeating a newborn’s every cell with antibiotics for the first 6 weeks of life, but like with everything else, my only response in the ended is pray, trust, and believe. We also (Katie especially) have concerns of long-term implications of this regarding bonding and attachment. Again…pray, trust, and believe.

Thank you for praying, trusting, and believing in healing for all these things.

I still can’t get over how asymptomatic Emma was even right before getting to CHOP. She had some symptoms that would come and go, but nothing that would make even a medical profession much less anyone else think “hmm…I think there might be a full-blown infection in this little angel’s blood and cerebrospinal fluid that is presently causing stroke, seizures, and soon, respiratory failure. These were not blood strokes like people think of when you hear the word stroke, but rather an oxygen deprivation in the brain called cerebral hypoxia. Her seizures did not present as somebody would expect either. There were no outward symptoms. I didn’t even know that was possible. She never presented with a fever but rather had a low temperature (97) when we arrived it CHOP which is sometimes how newborns respond to an infection due to an immature immune system. Even before that, her temperature was normal. She wasn’t in respiratory distress — no flaring nostrils or sucking in her chest. She just seemed uncomfortable and was spitting up more than normal which led to and ER visit the day before just to be safe. Nothing seemed abnormal to them or warranted any concern. Even an hour before we ended up in the trauma bay at CHOP, when she passed her first pediatrician exam with flying colors, she wasn’t showing any symptoms that would cause anybody to be overly concerned.

I’ve thought often about how fussy Josiah was when he was a baby. He was tough. I never heard of the word colic before that, but the way he acted often led us to the place of concern based on presenting symptoms. There were quite a few doctor and ER visits all in all; most of which ended up as being nothing. I would even check his oxygen level relatively often with a cheap pulse ox I had purchased. Not once did I have the thought of checking Emma’s oxygen level, but even if I had, it likely would have been normal, just as it was at the ER and pediatrician. All that and it ends up being not just a blood and CSF infection, but one much more severe than the doctors typically see. I don’t say any of this to cause any parent to be fearful – being a parent is hard enough. It will certainly be a journey for us to learn how to find that balance especially with the Emma’s risks moving forward.

As a quick update, I wanted to talk about our little girl’s trouble with her PICC line. I think I mentioned in a previous post in that she, and we, went through quite the difficult (possibly traumatic) experience trying to get her last blood culture. She doesn’t have any good sites left and it is now noted on her chart that if she has to get stuck (like when she needs sedation for a PICC procedure), it has to be done under ultrasound by vascular. She has issues with her PICC line that have not enjoyable watch or deal with. For those who don’t know, a PICC line is often recommended for people receiving long term medication or those which are harsh and can damage small peripheral veins. It is a Peripherally inserted central catheter which Go to Spring the insertion in the arm or leg all the way to the heart. Frequent x-rays, especially at first, ensure proper placement. It saves the patient from frequent IV sticks since IVs usually have to be replaced a couple times per week. There are more risks of infection, but everything’s a risk. Well in this poor girl’s case, it has caused more issues than usual. Without giving too many details, I’ll try to convey her PICC drama. First, all she needed was a dressing change. These are sterile procedures, but typically uneventful. The x-ray following the changed showed that it was too deep so it had to be adjusted. Then it was occluding where the line used to enter her body but was now a little farther out. Occlusion mean that it is blocked. If the cause of occlusion cannot be identified and remedied, the line has to be pulled and redone (most often in another location). They check this by flushing the line, just as they do following each dose of antibiotics. Then it wouldn’t flush at all and was thought to be kinked during the last PICC adjustment. It was, and they fixed it. Then it was too shallow and needed pulled back. I can’t remember if this was all at the same time, but they ended up pulling it back to mid-line, meaning not all the way to her heart because it was too shallow to leave it central. For each of these adjustments, it’s a sterile procedure which involving removing all the dressing which is usually not a big deal, after 4 or 5 dressing changes, Emma’s skin was missing a few laying and extremely red. There were concerns of infection which were monitored closely. We just prayed for no more issues and thankfully it was good…for a few days. Then one morning it kept occluding during an attempt to administer antibiotics. When it was looked at further, it wouldn’t flush at all and then began leaking back out which meant the PICC line had failed and had to be pulled immediately. I think it was about 4 pm. Okay, so she needs a new PICC line…not great, but at least now we don’t have to worry about the same issues that we’ve been. They say the procedure can take 2.5 hours to allow for sterilizing, x ray and other things. Placement of the actual PICC takes much less time. They tried her left first which was unsuccessful due to the inability to pass her hips likely due to her natural “frog-like” position. It took all of 2.5 hours…maybe more…to find out that she still needed another procedure. They wanted to give her a break and said they would come back once the night got “settled in” (my words, not theirs). Around 1130 pm, they were ready for attempt #2 for which I was allowed to stay behind the curtain in my luxurious suite that I stumbled upon 3 weeks ago and haven’t been able to leave since (its actually really nice for a hospital in all seriousness). Attempts #2-3 were in her right leg and unfortunately both unsuccessful for the same reason as her left. The fourth times the charm, however, because now she has a new and successfully placed PICC line in her left arm. The next day, this one started occluding, but the cause was identified and addressed. She has to wear a giant splint on that arm keep it straight in order to protect the PICC line mostly since it’s so critical keep this one in good condition. We don’t like seeing her arm basically immobilized considering everything else, but we also don’t want her to have any more PICC related drama.