***The major update is at the bottom***

The things coming against us are many. If you can keep praying please do so. I think for every attack against us, God pours out a double portion of grace that anoints me like the oil of gladness. I really have been given something miraculous from a source that won’t run out. We’re still human though and we’re exhausted. So many people have been so kind and thoughtful during this time. Thank you for all your prayer and support.

I have more details to give and stories to tell both now and in the future, but things keep hindering the process. That’s okay. Some expected…some strange. I refuse to let it shake me. They will come eventually.

I figured out the phone issue. Listen to this. Too much prayer. Seriously. So we can know I asked multiple times what the problem was once they restored the issue then I had prior, I couldn’t get a straight answer. I was just told to stop doing what caused the restriction. So when it happened again, I didn’t let it distract me like it did the first time. I did eventually spend some time trying to figure it out, but this time I knew that I wouldn’t be able to figure it out, I just hoped to get the answer I was looking for. They flagged it for spam messaging based on the amount of prayer requests I was sending. It was a lot, I guess, but was it really? Even if it was, these were real people reviewing the account and they had the real real authority. Unlock it, or send a notification before the termination. Termination. They didn’t do any of that. They wouldn’t reinstate the account which I didn’t want done anyway. Then it got interesting. They wouldn’t allow my phone number to be ported out. This is the phone number that I’ve had for 20 years, Long before I started with this company. I pushed the issue. Incessantly, they wouldn’t budge. I was on the phone with real people. They knew where I was at right now and they knew it was prayer requests, not spam. They wouldn’t budge. Each time I would get put on hold for a while while I was discussed and investigated amongst another branch. Not allowing a phone number to be ported out for no reason is against the law, but all I could really do is file a complaint with the FCC. I demanded refunds since I had just paid for the month and I figured that would be an easy one. 15 minutes on hold and that was denied based on the cause of termination on my account. It was almost laughable. Then I called back again without giving any indication of a previous case number or anything. It seemed pointless since everything was linked to my number, but that’s what I did and it was like none of the conversations took place prior. I was able to port out my number successfully to another carrier. At the end, I calmly, but with emotion, explain the insanity of this entire debacle. He was a real person, and I could tell he had real sympathy. I told him it has nothing to do with him. I didn’t get angry at any time. I thanked him for helping me. And that was it.

I stayed there for a moment in the Solid Rock and soaked up the encouragement for receiving such attention.

I think I previously said everyone is great here. That was foolish. There’s a lot of staff on 12 hour rotations and we rarely have the same person twice in a row. A few definitely don’t like us. I’m not sure why. It might be because of the bible near Emma or the sticky note verses Katie put where she sleeps. Maybe it’s something else. Or nothing at all. Yes, make it the last one, because these things won’t persuade us. One of the doctors, whom I had never met prior, came in at a very high stress time this morning. After Emma had just been stuck three times unsuccessfully to draw a blood culture and twice unsuccessfully for an arterial stick. He lacked any bedside manner and was rough with Emma as he searched each limb for anything viable to draw blood from including the deeper arteries, but excluding the main veins. I wondered if he had already formed an opinion before he met us or if he was always like this. The latter didn’t seem likely. I was standing right there monitoring the situation closely and trying to discern how to respond. He was too rough, but not so much so that I needed to intervene. Several things happened including things that seemed as if they had the button with perfect accuracy, the trigger that would cause me to respond in a manner that would not be helpful to the situation. That, combined with the exhaustion of everything else, should have caused something to change in me. But it didn’t and I wasn’t numb or unaware in any sense. I was more involved and more aware of everything and my responses than ever. It was almost as if those buttons were just capped off and unable to be hit. I determined he was a good doctor and would make the best decision for Emma in this scenario. He sharply said there’s nothing left to get blood excluding the means which would be too risky. He called for vascular to do it under ultrasound, but if they were unavailable, he had a site picked out that he could get. It’s nothing abnormal about Emma. She’s well hydrated. Newborns just run out of spots quickly. She’s had a lot of tests, but I realized how many unsuccessful sticks she’s had, especially this morning. Then it didn’t bother me until I realized they didn’t use hot packs which would give the best odds to hit. Now that spot was blown. And the others. All of them actually. I felt like a terrible advocate for Emma. I knew it wasn’t true though. We did our best and we learned a lot. She’s been going through a lot and it hurts to watch her hurt. Her PICC line needed 4 adjustments/bandage changes in over 2 days   and it looks like the top layer of her skin came off with the last bandage it’s so red and irritated. They were concerned about infection, but said it should be fine. First the picc line was good, then it was too deep (close to her heart), then too shallow, then move to mid-line which is less ideal. Now its Anyhow, there’s so much to pay attention to. I could have pushed them to call for vascular earlier. Now I know. If she needs any more sticks after this, it’s noted on her chart that she needs it done under vascular ultrasound. Oh and this was unexpected after we were abruptly woken up this morning when we thought we would be able to sleep in. She wasn’t supposed to have any more tests, but she came down with a bunch of symptoms a few days ago which were largely ignored until I made a big deal of it at rounds after her symptoms were bad enough that everybody can see you, not just her parents. She seems to have gotten better the last 2 days, but now they are concerned to figure out what it is. It’s likely just one of the many viruses coming around, but they need to make sure. UPDATE ON THIS: Everything came back negative so far included the blood culture after 24 hours (although not final until 5 days). All of Emma’s symptoms have improved or subsided as well so we anticipate and hope for everything to remain that way.

Well, I didn’t plan to include all of that, only the brief, but much anticipated update, but that’s what’s going on right now on our walk with Emma and if you’re walking with us, thank you for taking the time to read it.

Thank you to everyone who prayed and has been praying!

********MAJOR UPDATE********

***I want to update you prayer warriors with the very latest from the doctors

So the results are in and there’s good news and there’s bad news

The good news is that Emma’s last spinal tap came back negative. Her brain MRI also showed that it was clearing the infection well. The neurologist was able to say with certainty that the areas that were of concern for abscess are responding well also. This means that surgical intervention (aka brain surgery) is off the table. This is very good news.

There is bad news, however, and it’s very heavy and hard to hear, especially after being told some optimistic, but inaccurate things from a different neurologist than we see now. The current neurologist determined that the infection resulted in significant damage in Emma’s brain with particularly severe damage seen in the basil ganglia. This isn’t good. That part of the brain is responsible for a lot as it connects to other parts of the brain acting as a “gatekeeper.” This involves motor, emotional, and cognitive controls. Any attempt to determine the degree of severity to which Emma will be affected would be pure speculation at this point. The neurologist said she expects significant delays and disabilities and that she may not walk, talk, hear, or speak but she also isn’t say that all (or even any) of that is a guarantee. She said that she loves being proven wrong. The nature of the brain [especially in newborns] and the nature of God of course makes any specific outcome simply unpredictable. Right now, she is alert and responsive, sucking and eating, and shows the normal newborn signs which is great. It’s essentially just waiting, monitoring as she grows and approaches milestones. She also mentioned that she also will be at risk of respiratory failure, seizures, and other terrifying unknowns. Nothing like a little cherry on top to help mommy and daddy sleep well at night. Emma will be in the NICU for the next 3 weeks on IV antibiotics. Her infection was more severe than the doctors initially thought. She wasn’t their typical case.

Life is just so fragile. Just one hour before we got to CHOP, Emma essentially got a full and clean bill of heath from the pediatrician at her first appointment. She had some symptoms, but nothing too alarming and nothing that wouldn’t go away. Fussy, uncomfortable, and more spitting up were the main symptoms. We took her to the ER the day before just to get checked out, but they cleared once she calmed down after a full diaper and a bottle. We all thought she just had a belly ache. The following day, when we left the pediatrician and headed to CHOP “just to get checked out just to be safe,” we figured it would be like any other day or any other visit.

You know, when something like this happens in life, it changes everything and can make you question God. It calls you to respond and make a choice – a choice that will ripple through everything and change your life even more than the thing that started this process. Is God still good? The response to this question will either push you toward Him or away. I’ve settled in my heart the answer to this question and determined there is no other place to look but up. Otherwise, I face bearing burdens that I was never intended to bear and risk being crushed under their weight. It looks like this journey of unknowns that began on that Thursday isn’t over yet. Whether it’s one step at a time or one day at a time, the intervals will be short and the level of trust and faith required of us will be high.

From the bottom of our hearts, Katie and I thank you for all your prayer and support. They were not in vain and not without purpose. We have seen evidence of God’s hand throughout this entire time and we do not anticipate that to change. We welcome your continued prayer and communication as continue this walk of faith.

***Just for clarity, please know that we do still believe for a complete miracle and welcome (actually encourage) you to continue praying for that as well. The story is not over yet. My writing conveys the story by providing insight that highlights the difficulties which I know can sometimes lead to a tone of disappointment or defeat. Please know that this is not where find ourselves, nor is it where we will allow ourselves to settle. Emma was born perfect and we believe He can restore her and heal her brain especially with the infection being a result someone’s mistake. Despite the opinion of the doctor, however broad it may be, anything is possible at this point and even she knows that. It would be very wrong for her not to give us all the possibilities based on what she sees and based on her expertise. Even so, we will rest in His peace and surrender to His will with acceptance of that which he deems best for us. We will not rest in the knowledge of man, nor will we surrender to or cower in acceptance of the “possibility” of something. We will not wallow in the discouragement of a seemingly unanswered prayer. Prayers were answered and they will continue to be. Regardless of what the future holds, we will continue to love Emma with as close to a perfect love as that with which our Father loves us.***