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

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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

You’re welcome, and thank you!

My two little guys have fallen in love with the Moana movie, more specifically Maui and the “You’re Welcome” song.


They know all of the words and it’s a scream to watch them sing to it. They also now take advantage of every opportunity to say “thank you” and “you’re welcome.” This is actually really appropriate and relevant to our lives right now as we have so many people to tell “thank you.”

It is incredibly humbling to be in a position where you genuinely don’t have the resources or ability to even survive a situation let alone fix it. All you can do is graciously accept help from other people. In the past I have thought it was silly for people to get embarrassed about needing help. We all need a little help from time to time so don’t get all weird about it, just smile and say thank you because it’s no big deal.

Well I get it now. Sometimes you need more than a little help for a little bit of time. Sometimes you need big help, over and over. Sometimes it is really hard to simply smile and say “thank you” because you’re so horrified to once again need help and you begin to feel like you’ve become a walking charity case. You don’t want people to groan when they hear your name mentioned. “Oh those Frasiers, they’re in trouble again, I wonder what they need this time”
Danny and I have spent countless hours fretting over how we will ever express how truly grateful we are and how we will ever repay everyone for all of their kindness and generosity.
It has very much been an eye opening experience. It’s like trying to repay Jesus for his sacrifice on the cross. Impossible.

A GoFundMe (Frasier Baby Medical Fund) page was started for us to help us cover some of the expenses we are encountering on this journey. It has been a fun surprise (and by fun surprise I mean absolutely shocking to the point of feeling nauseous) to discover even after our high deductible, how many necessary medical expenses don’t fall under the coverage of our medical insurance. In addition to the unexpected medical expenses We will also need to temporarily relocate to the Denver area to be closer to Children’s Hospital and this obviously comes with a price tag.

A few folks have asked why the need for the temporary relocation. In order to provide the best possible scenario for Jonathan’s care and reduce any additional risks to his health, it is best for him to be born at Children’s Hospital. Some doctors have even suggested we seek treatment for Jonathan at Boston Children’s or Children’s Stanford (which is astronomically beyond our means to provide for him even as much as we obviously want what is best for him). If he is not delivered at Children’s he will need to fairly quickly be transported there by emergency airlift. This of course would mean additional medical expenses and put us in the position of me recovering from delivery at one hospital while our newborn baby boy fights for his life at another hospital.

This is my fourth baby. A couple of my kiddos made early appearances into the world, with baby #3 making a very quick entry. Prior to Jonathan’s diagnosis my regular OB had already informed me that “the moment you realize you’re in labor you need to head straight to the hospital because I’d prefer if you didn’t have a baby in the car.” Taking this into consideration the medical professionals have made it clear that we need to be within easy driving distance to Children’s Hospital at least a few weeks before our due date.

Our goal is to create as stable of an environment as possible for all of our children with the chaos they are bound to experience this summer. We want them to have a safe living space. We want to be these awesome parents who are able to be everything and everywhere for our kids but the reality is that we’ll have a baby in the hospital, kids at home, and Danny still has a job to work (which may require a long commute for him). We can’t be everything our kiddos need.

As a pregnant mom you carry your baby for 9 months and then when he is birthed upon the world you expect to be able to be there to comfort him and hold him close so that he can adjust to “life on the outside” as gently as possible. My baby is going to be in a hospital undergoing open heart surgery. I may not be able to snuggle him the way it seems a mom and a newborn should be able to do. I want to be there as close as possible to him and at the very least to provide the familiar sound of my voice during those times he can’t be held. At the same time I still want to be present for my other children. Their needs don’t go away just because they have a sick brother. I still want to be the best mom possible for them, to laugh and play, instruct and guide, hold them when they cry and let them know that they are safe and well loved. Danny and I can’t be everywhere at once. When we aren’t able to be with our other boys they need safe and reliable care which means we have to accept help from trusted people. We will incur childcare expenses as it is unfair to expect anyone to sacrifice time away from earning their own paycheck. We do not want to take advantage or cause anyone to feel resentful for helping us or our children.

Amyhow, all of that said to get to the point of saying thank you.

Thank you to everyone who has shared the GoFundMe page. Every time I see that it’s been shared my heart is warmed that so many people believe we are a worthy cause. We have been floored by the generosity of all of you who have donated. There have been donations from our family, close friends, friends we haven’t seen in years, friends we’ve just met and people we have never met. It is tremendously humbling. Thank you for caring that much about us. Thank you for believing our baby’s life is worth it.

We are also so truly grateful for the support of our communthity around us the past couple of weeks. This is an entire other story in itself to share but here’s a short summary.
Our 3 year old Josiah had been sick for a few weeks with many visits to the pediatrician and urgent care. On the day his fever spiked to 105.3 (yes you read that correctly) his illness was no longer brushed off as some unfortunate viral infection that he was taking a long time to recover from.

Our sweet little guy ended up being hospitalized for nearly a week. He underwent numerous invasive and noninvasive tests. I can’t even express the heartbreak of having to hold down your sick 3 year old while something painful is done to him especially when he looks up at you through his tears and cries “mommy help me! Mommy they’re hurting me!” He doesn’t understand that you’re trying to help him and that the bigger fear is not the pain he’s in now but the fact that if someone doesn’t find an answer soon he could die.

It was a long and terrifying ordeal that turned out to be a severe kidney infection requiring several days of IV antibiotics. He will need some further testing over the next few weeks after he recovers but praise God because he’s on the mend.

I can’t express enough thanks to all of the people who prayed. I put out some desperate and panicked messages/phone calls/emails and the response was overwhelming. I can tell you that it was after those calls for prayer went out that we started seeing things change and turn around. It is such a reminder to me to keep asking for prayer over our situation. If you have even 2 minutes right now please take a moment to pray for my kids.
Ethan is still struggling through medication and behavior issues. I try to maintain as much privacy for him as possible but he can use all of your prayers.
Josiah continues to recover form this infection and may potentially have other kidney issues that need to be addressed.
Elijah has born the brunt of being “the only healthy kid” for the past couple of weeks. He is now in need of a lot of attention. He seems to be having night terrors and some separation anxiety.
Then of course there’s Jonathan. He still needs a miracle for his heart. We believe God can touch his heart and cause it to grow and form as it should.

I have so many of you to thank for all that you did for us while Josiah was in the hospital. Thank you for praying. Thank you for listening to my fears and worries at all hours of the day and night. Thank you for putting your entire day on hold to take care of Eli so that we could be at the hospital. Thank you for bringing us meals and running errands for us when we were so tired that we didn’t know how we’d make it through the day.
I know there’s so many other people to thank for so many things and I sincerely apologize if I missed you and what you did for us. Please know that you are appreciated. As I try to think of how I can ever appropriately thank everyone, a scripture from Genesis keeps running through my mind “I will bless those who bless you.” This was God’s promise to Abraham; to the children of Israel and in turn to us once we are adopted into the family of Christ. Thank you for being a blessing.

 

Don’t forget it’s National Nurses Week! Thank you to all my nursling friends out there for doing what you do. Thank you to all my Pikes Peak Hospice peeps! Thank you to all of the nurses who have recently cared for my family (Memorial Hospital ED and peds, Children’s Hospital Cardiology and SC Maternal Fetal Medicine)!