Rest Easy

 

One more mile ’til I lay rest
I have put myself through this rigid test
But the mile has never ended, no distance has been gained
I do not see greatness I wanted to obtain

Apparently Elijah decided he’d had enough of his brothers hogging all of the attention and jumped in on the action. Last night (Sunday) he took a header into the entertainment center. When he turned around and stood up I thought “oh no, don’t panic, heads bleed a lot.” Then when I picked him up and saw the size of the gash I immediately yelled to Danny “Emergency Room! Now!”

Where is my embrace from the race that I have run?
I have kept a steady pace but still I have not won

Seven stitches in the forehead later, we were back at home facetiming with big brother Ethan to help cheer up the battle wounded warrior. We’ve been very fortunate that my parents have been able to care for Ethan during this time that he’s had some behaviors and difficulty adjusting to all of the changes he’s been facing in life. I know it would have been especially hard for him to see Eli hurt and sit in the emergency room for treatment as medical facilities cause him stress and anxiety.

Rest easy, have no fear
I love you perfectly, love drives out fear
I’ll take your burden, you take my grace
Rest easy in my embrace

Fortunately the ER doc was able to use a topical numbing agent on Elijah’s forehead. He didn’t care for it but it was much better than an injection. As we waited for it to take effect, Josiah patted his leg and said “it’ll be fine. Don’t cry Eli.”
When it came time for the stitches Danny stayed with Eli and I took Josiah out of the room as didn’t want to traumatize him as well. As it turned out Eli did great. He didn’t fuss or fight the doctor on the stitches at all. The doctor found me in the waiting area to tell me that it was the best he’d ever had a kid sit for stitches.
No signs of concussion or any other trauma, just a fantastic cut.

I am such a sinner, I fear my evil ways
I fear my imperfection, I fear my final days
I just want to take control and snap this rusty chain
Drop my heavy burden, it seems to be in vain

Sunday was an emotional day. Danny and I began our discussions on Jonathan’s Advance Directives. We know where we stand on making decisions to treat or not treat based on numbers and success rate statistics. It’s the issues such as: at what point do we enact a DNR, that we are struggling through. I’ve heard of stories of babies who required resuscitation after open heart surgery who ended up being fine. However as a nurse (especially a hospice nurse) I know about all of the other stories when things don’t end up fine. At what point with resuscitation, intubation, etc is enough enough? Unlike in the movie The Mexican I don’t think the answer is “Never.”

Rest easy, have no fear
I love you perfectly, love drives out fear
I’ll take your burden, you take my grace
Rest easy in my embrace

We have a lot of prayerful consideration ahead. These are not easy topics nor are they easy decisions. No one can make the choices but us and we are going to have to rely heavily on the Lord to know what our decisions should be.


I am not a bold man even though I want to be
I am just a dreamer with a timid history
Scared of confrontations I fume all through the night
The world has it’s hold on me and I just want to fly

I wish someone could step in and say “do this. This is the right answer.” I suppose that’s why we have the Holy Spirit. I’ll admit though, it is hard to hear His voice at times, especially when all of the shouting, the fear, the anxiety on the inside of your own head is trying to drown everything else out.

The sky, the sky is open wide
But I can’t fly ’til I step aside

I had been feeling super anxious on Saturday evening into the next morning. After we made it into church I began to feel some relief. It wasn’t necessarily the sermon (which was excellent) or the worship (which was also amazing) but the connection with our community. It’s difficult to even put into words how meaningful it is to simply see a familiar face, to get a hug, to have someone genuinely listen to how you’re doing. We haven’t been able to make it to church in about a month and not going hurts. I realized that in a few weeks we won’t be able to be physically present at our church. We may in fact miss a few months. I’m sure we can find a church to attend while we’re away in Denver, but will we find the community?

Rest easy, have no fear
I love you perfectly and perfect love drives out fear
I’ll take your burden, you take my grace
Rest easy in my embrace

It’s all in God’s hands now. There’s not much we can do about anything.

Rest easy
Rest easy
Rest easy in my embrace
Rest easy

-Audio Adrenaline

Baby Frasier Medical Fund

Quick Update

We’ve had a million and two doctor appointments since I last updated on how Jonathan is doing. Between the chaos of Josiah being sick, and then the rest of us (minus Ethan thankfully) picking up this horrible cold that I will always look back on as “the plague,” we haven’t had a lot of free time on our hands. Every week I have at least one appointment for the pregnancy and at least one appointment for one of the other kids.

Per Jonathan’s last echocardiogram nothing heart-wise has changed. We keep holding on to hope every time we go in that today will be the day mouths drop open in shock as they tell us everything looks great. It hasn’t happened yet, but we keep praying for it. The good news though is that nothing has gotten worse. There was a fleeting moment of terror when the cardiologist came into the ultrasound room to take a second look at something that concerned him. It turned out to be nothing, but still, in that moment when the doctor is pursing his lips together and intently studying the ultrasound monitor you can’t help but hold your breath for an eternity and wait for the proverbial “other shoe to drop.”

Our latest maternal fetal specialist ultrasound showed that Jonathan’s growth is right on target and everything else looks great. Essentially, outside of a major heart defect, this is about as “typical” of a pregnancy as one can get.

Yesterday I had a routine OB appointment and everything was on track there as well. Heartbeat and movement were good, belly is measuring as it should, and glucose test results were normal.

Until yesterday our understanding was that all of our care (fetal cardiology, OB, maternal fetal specialist) would transfer to Denver providers at 32 weeks. Now believe it or not, lots of people vacation during the summer. As it turns out, medical professionals are people too. Shocking, I know. 😉
We’ve run into some scheduling issues with some of the various team members being out for vacation over the next few weeks. This means we will stick with our local medical teams for a couple extra weeks before transferring all care to Denver. This does save us some commuting time in the weeks prior to relocating to Denver.

I’ve spent quite a bit of time the last two days trying to get appointments scheduled here locally as our providers here had been anticipating those follow up appointments would occur in Denver. Over the next few weeks the frequency of our appointments will increase as Jonathan will be closely monitored for his health and well-being in utero. This means continued echocardiograms, ultrasounds for growth, and we will also begin doing a weekly biophysical profile.

Here is a link with some additional info on the medical side of how things look for Jonathan’s heart and what intervention after he is born will entail.
http://www.sistersbyheart.org/content/what-hlhs

Thank you again to everyone for keeping us in your thoughts and prayers.

 

https://www.gofundme.com/frasier