Author: ChristinaF

One year ago today Jonathan had his first open heart surgery (OHS), the Norwood procedure. It is one of the most complicated, of the “standard” surgeries performed for CHD (congenital heart disease).

Jonathan was born on Friday 7/21/17. His Norwood was scheduled for Wednesday 7/26/17.

With our middle boys still being so young (one year and three years old at the time) we couldn’t stay at the hospital full time with Jonathan. It hurts your heart as a parent to feel like you’re having to choose between your children. Our oldest, Ethan was staying with grandparents. Any time we were at the hospital with Jonathan we felt terrible that we weren’t with the other boys, then when we were with the other boys we felt we had abandoned Jonathan alone at the hospital.

On the evening of Monday 7/24/17, after a rough day, we received a phone call informing us that Jonathan’s surgery had been rescheduled for the following morning. I was incredibly upset. The day had not gone as planned and I did not get to spend much time with Jonathan due to meeting with various medical teams and my other kiddos having struggles. I thought I was going to have all day Tuesday to spend with him before surgery on Wednesday. At this point Ethan hadn’t even gotten a chance to meet him yet. I was exhausted and emotional but I called my mom who managed to gather Ethan then picked me up so we could visit Jonathan.

We got there as quickly as we could, arriving to the Cardiac ICU a few minutes before 9pm. I was so relieved that Ethan was able to meet his baby brother even if he wasn’t able to hold him. It broke my heart to think of Ethan never getting to meet Jonathan, and Jonathan barely experiencing being held in the loving arms of his family if he didn’t survive surgery. We snapped a few photos and then his nurse laid him in my arms so we could get in some comforting snuggles. Ethan sat on the couch quietly with his iPad while my mom and I whispered in hushed tones as I gently cradled Jonathan as best as I could with all of the wires and tubes attached to him.

Within a few minutes the unit secretary entered the room to let us know that we would need to leave as no visitors outside of parents were allowed after 9pm. I quickly told her that I was Jonathan’s mom and the visitors were his grandma and my 15 yr old son. I also explained that Jonathan’s open heart surgery had just unexpectedly been moved forward to first thing the next morning and this was the only time Ethan had gotten to see his brother.
Nope, it didn’t matter. No exceptions to the rule, we were informed.

That is all I have to say about that.

The next morning I remember shivering. It was the kind of cold you feel when your body is nauseous and shaky from sleep deprived exhaustion. The emotion was so thick Danny and I could barely speak. I felt angry at the world.
We were fortunate to have all of our boys’ grandparents pitch in to care for them so that all three were safely cared for while our hearts were laid open on the table with Jonathan’s.
Prior to surgery one of my sisters was able to come to the hospital and meet Jonathan for the first time. I choked on the lump in my throat as I watched her eyes mist as she stroked his soft head. Then a couple of people belonging to the prayer ministry team of a church that had been praying for us brought communion and prayed over Jonathan.

We are forever grateful to all of the people who surrounded us in support and to the medical team who cared for Jonathan. Jonathan’s surgeon Dr Jaggers is a giant among men. As a nurse I have spent time with surgeons and frequently they are brusque and don’t generally give you the “warm fuzzies.” This is not a bad thing. Surgeons have to make very complicated life and death decisions, oftentimes with only mere seconds to do so. Many times I’ve heard others complain about surgeons having a “God complex” but quite frankly, that’s not a bad thing to have in someone who is literally holding your life in their hands.

Dr Jaggers is incredibly intelligent and one of the top in his field. Danny and I were not expecting to sit down with this soft spoken man whose kind, blue eyes spoke volumes. We were profoundly touched by his gentleness with us.

We had a few moments to hold Jonathan before the anesthesiology team came for him. It’s odd the things that one remembers clearly opposed to the things that are a fuzzy blur. We were able to walk with him to the doors of the OR. I don’t remember if it was the anesthesiologist or nurse anesthetist, but I clearly remember handing Jonathan over to this man who had enormous arms. It seemed strange to see this burly armed guy so gently cradling this tiny baby. I remember studying the tattoo on his forearm but for the life of me I can’t remember what it was. When he looked at Jonathan’s birth date he chuckled because it was nearly the same as his: 7/21/17 vs 7/21/71.
Oh good! A connection!
I always feel reassured when medical staff make some type of personal connection. I swear his name may have even been Jon. It’s terrible that my memory is hazy because this anesthesiologist has cared for Jonathan multiple times since then, you’d think I would remember.

Danny and I kissed our sweet little boy goodbye and then he was whisked away. We stood in the middle of the hallway staring at the closed OR doors for I don’t know how long. I couldn’t look at Danny because I knew we’d both burst into tears. We broke from our trance when another set of doors opened and a team came zooming in with a new patient. I immediately recognized it was a freshly born baby from the maternal fetal floor. We squeezed ourselves against the wall as they wheeled the infant bassinet into the very same room that had been Jonathan’s first room in the CICU days earlier.

I briefly peered at the precious  newborn rolling by. He had a beautiful head of dark hair.  I immediately thought of the baby’s mom up on the maternal fetal floor recovering from delivery so far away from her baby. I said a prayer for her as my heart ached knowing how I had felt in the same situation just those few days before. I wished I could reassure her that her little one was ok. I wanted to tell her that he wasn’t alone and offer to sit by his side until he could be in her arms. In that moment little did I know that this baby also had HLHS and that his mom would become a cherished confidant as we travel the “heart mom” journey together.

Jonathan’s OHS was anticipated to last eight hours. I knew I couldn’t sit in a waiting room for the next eight hours. Danny knew he couldn’t not sit in the waiting room for the next eight hours. We hugged goodbye. He sat in a room down the hall from our baby praying and meditating on God’s word. I returned to the house we were staying in and shut down.

I was immensely relieved when Danny called to say that the surgery had been completed a bit earlier than expected. I immediately headed for the hospital and of course at this point I was ready to spend every possible second there while Danny was ready to get a break from it.

We knew from pictures we had seen of other babies what to expect Jonathan to look like following his open heart surgery. However nothing can truly prepare you for the sight of your intubated baby with an open chest. I promised myself I wouldn’t cry while I was with Jonathan yet tears automatically sprung to my eyes. The nurses were upbeat and told us how great he was doing but the tears still fell.

From that point forward I don’t remember much of the day. I do remember the nurses caring for him were amazing and completely reassuring that it was ok for us to go home and they would be with him all night. It was gray and drizzling outside in the waning light. On the way out of the hospital I stopped at the nourishment room for crackers and tea. My heart breathed a sigh of relief for my little “lion” as well the little “acorn” across the hall whose mom was now holding him.

Happy Birthday mighty OAK!

Happy Heartiversary Jonathan!

So this thing happened: I had a baby, then I blinked and now he’s having his first birthday.
Only,  I didn’t blink. I didn’t close my eyes once, not even to pray. It’s peculiar how the memories and details of this time last year are fresh; they are imprinted in my mind as if it was last week and yet at the same time I feel as though three lifetimes have passed since then.

When this journey began I committed myself to documenting it, knowing that we would need a supportive community around us and believing that maybe someday in the future it would be helpful to someone else going through a similar experience. I failed in that endeavor. I sat down a few times with the intention of putting my thoughts and experiences into words on a screen, and even managed a couple of drafts but for the most part, I couldn’t. I struggled to separate the joy from the sorrow, the hope from the fear, and my perception of reality from the truth of reality.

The first several months after Jonathan was born, were nothing but sheer exhaustion. I mean life is like that when you can’t close your eyes. Then the stresses of the rest of our life outside of a CCHD baby began to snowball and catch up with us as we faced the typical as well as some unexpected challenges in our daily life. Most days I barely form coherent thoughts let alone intelligible sentences to my children and husband. I have failed to keep in touch with even my closest friends and family members. My phone is currently (ie always) painted with those little red bubbles that let you know how far behind in “being caught up” you are. At the moment I have 98 unread text messages and 72 missed phone calls. I won’t even tell you how many thousands of new emails I have or how many apps are reporting multiple updates. Sometimes for comic relief I like to screenshot it so I can send it to my extremely “Type A” husband. He does not find it amusing.

Here we are now a year after Jonathan’s birth and we’re still waiting to blink, to close our eyes and maybe even take a little rest. It seems though that every time we start to relax; to let our guard down, something else happens. Eventually I would like to recount all these pieces of the journey, at least to the best of my memory, which seems to be fairly shot these days. For now though we’re still in that rough trench, hunkered down waiting out the dark. We can see the inky black starting to fade to gray but it’s hard to determine if it’s truly daybreak or simply the artillery explosions lighting on the horizon.

There have been frightening and desolate moments when our hearts fleetingly thought all hope was lost but we have never been without our faith or belief in focusing on the positive. I wish this meant that sunshine and rainbows always shoot out of our mouths when we speak. The truth is that sometimes you’re in a dark place and there’s nothing you can do except exist in that space. It doesn’t mean we’ve given up or are dwelling on the negative. We don’t slough around depressed, devoid of laughter and enjoyment of every day moments.

It means we’re hesitant. We hesitate to brim with excitement over, well, anything and everything. We hesitate to make plans, to answer the door, to go out in public. We hesitate to take on any situation or activity without thinking of every possible outcome and creating a Plan B, C, and D. We’re tired. We overthink small decisions and moments. We feel lost. It seems like we’re always waiting for the other shoe to drop….and while we’re doing this it feels like life is on hold. Which is a strange paradox because life is simultaneously moving forward at an alarming pace. It is anything but on hold.
Did I mention we don’t sleep?

We are in a dark place and that’s ok. It is okay to be in a dark place.
This is a concept I’m slowly coming to understand. In my life I have always been one to grieve and move on. I’ve always felt it’s acceptable to be in a dark place for a day or two but then it’s time to get up off the floor, deal with your issues, and move forward. What I am learning is that it is not  wrong to be in a dark place for a prolonged time. It doesn’t necessarily mean you are stuck dwelling on the negative and feeling sorry for yourself. Sometimes living in a dark place is a part of the path. After all, seeds cannot germinate without first being in a dark place.

We’ve been in this trench for about 18 months now, and that makes people uncomfortable. I get it. I’m not comfortable with it either, and I for sure wouldn’t be comfortable with any of the people close in my life being here for this long.

Remember the movie Under the Tuscan Sun? There’s a line from the movie that goes:
“You know when you come across one of those empty shell people, and you think ‘What the hell happened to you?’ Well there came a time in each one of those lives where they are standing at a crossroads… someplace where they had to decide whether to turn left or right.”

I  fully subscribe to the theory of choosing to be an empty shell person (or not an empty shell person); choosing to be happy or unhappy, choosing to stay in the dark place or walk out of it. What I didn’t ever consider before was that sometimes you’re an “empty shell person” not because you made a choice to turn right or left but because it is simply the season you are in for the time-being.
I feel like one of those empty shell people but it isn’t because I’ve made a choice not to move on, it is simply where I am for the moment. I don’t want to be here. I don’t like the person I am while existing in this hard place (the dark/wilderness/desert/trench whatever you want to call it). This person is so foreign to me, it’s not who I am; who I know myself to be.
I know I won’t escape this place unscathed, you can’t live through it and not be changed as a result. Yet I am beyond ready to be free of it and the person I am in it.
A year and a half of walking through these perceived traumas. Is it over yet?

The children of Israel wandered in the wilderness for 40 years. Forty years.

I used to shake my head at this story and think “if they had just listened, if they had just had more faith then they wouldn’t have been punished with the wilderness for 40 years.” We are human so we make mistakes. Even when we listen and obey, have all the faith in the world, and do everything perfectly (which we can’t), terrible things still happen. We still end up in the wilderness; in those hard, dark places. What I find particularly interesting about waiting in the wilderness is God’s presence is so clearly evident. Much more so than in many other places. In the wilderness He led  as a cloud by day and fire by night. He fed His people with manna and quail. He quenched their thirst with water from a rock. Their clothes did not wear out nor did the sandals on their feet.

I have a favorite pair of flip flops. They’re actually my only pair and I’ve had them for nearly 10 years. Instead of wearing out they have become more comfortable over time and don’t look old or broken down. Hence why they are my favorite/only pair of flip flops. A few days ago on an outing with my “middles” I blew out my flip flop. I was surprised, and not super thrilled to have to walk to the car with one bare foot. Surely it had to be a sign right? What the heck did it mean?

I do believe in signs.  I believe God can use every day happenings to speak to us. Ok God, what are you trying to tell me?

I thought of all of the the things shoes and the soles of our feet symbolize. I thought of all the scriptures in the Bible of sandals relating to God’s provision and holiness. Maybe God is reminding me that sometimes we unknowingly tread on holy ground. Maybe He’s telling me that the time in the wilderness is coming to a close. Maybe he’s reminding me that Jesus’ heel was bruised but the enemy’s head was crushed. Maybe he’s telling me it’s time to put on new shoes and get on a new path. This is where I shrug my shoulders, lift my hands and say “I don’t know.”

What I do know is that last week my first baby turned 16, and this week my last baby turns one. I am blessed beyond blessed.

I recently explained our medical shenanigans to someone. When I share our story I often feel like I have to make an excuse because I’m sure people must think I’m exaggerating or making it up. I made a comment to the effect of being unlucky from a medical standpoint. The woman I was talking to turned to me and said “You think this is unlucky? All of your children are alive.”
I had nothing to say after that.

In the past year I have watched friends lose their children to death. It is unspeakable. I can only relate in the sense that I know how it felt in the moments I thought my baby was dying. It is not a club anyone wants join but it is filled with these remarkable humans who even while they have stumbled to the ground and are groping blindly in the dark to find the path again, are willing to take the hand of another who has fallen and help them to reach the path.

My own pain and terror of the last 18 months has been offset by the generosity of spirit that has often come from the most unexpected people. I keep a notebook with a list of people to send thank you cards to. There are several hundred people on this list, and some of your names I don’t even know. Some of you will never know how much your facebook comment or text message in a moment of despair touched my life. Thank you for checking in on us even when I never responded. Thank you for showing up when I needed someone the most. Thank you for feeding us. Thank you for caring for my children. Thank you for sending gifts to people you’ve never even met. Thank you for helping with overwhelming bills. Thank you for praying because for a long time I didn’t even know how to do anything more than whisper “Jesus help.” Thank you for not abandoning us or forgetting us here in the dark.

Happy Birthday precious Lion

I am at a loss as to how to even attempt to put into words the emotions and events of the past week. At moments, the fear and terror have been overwhelming and it’s easy to forget the joy and hope of a brand new life coming in this world. There is no “good” reason why all of this has happened and even through my distress at the fact that God has allowed it to happen, He has also been faithful in carrying Jonathan and our family thus far.

This past week has been long after going through a difficult hospital experience on my side, leaving behind my precious little one as I discharged from the hospital, watching him undergo open heart surgery and starting recovery, attempting to balance my time between all of my children in a post-partum state while the world continues to move forward requiring me to deal with all of those little life pieces that don’t stop just because my own heart no longer feels like it is beating inside me.

Yesterday evening I trudged out of the hospital after a couple of hours of standing at Jonathan’s bedside. I moved slower and with more discomfort than one week prior at 9 months pregnant. After making it through a pregnancy with zero swelling, last night my ankles were non-existent and pain stabbed and ached through my entire body.

It was nothing though compared to the pain and ache of the longing to hold my child as I hovered over him watching him breathe, watching for any sign of his pain or recognition of my presence. Both the doctor and nurse on duty had explained there was a possibility by tomorrow afternoon (today) I might be able to hold him. I felt cautiously optimistic, holding excitement and hope at bay as I didn’t think I could bear the disappointment and heartbreak if it ended up taking a few days longer.

The guilt raged within me that this precious babe should have continuously been in my arms being snuggled and loved into this world with his brothers playing cheerfully beside him and not relegated to an hour or two a day of his mom standing by his bed holding the tiny little fingers of the only part of him not covered by tubes and wires.

As I drove home I thought about the fact that I haven’t even known how to pray and I have been relying on the prayers of others. I felt discouraged within myself that I haven’t been able to adequately pray for my children or take any steps forward in faith. Then this song came on the radio and it was like God was speaking directly to me over the fact that I couldn’t quiet my own soul enough to hear His voice.

Jonathan is doing phenomenally well! Those were the words of his nurse last night who has eight years of Cardiac ICU experience. The doctor yesterday placed him at the 90% level of how well kiddos do after the Norwood procedure. God has a magnificent purpose for his life. The prayers of believers every where are holding Jonathan (and us) up through this. We will make it through to the other side. We will walk as lions.

Saul and Jonathan were beloved and pleasant in their lives,
And in their death they were not divided;
They were swifter than eagles,
They were stronger than lions.
2 Samuel 1:23

So, here we are…less than a week away from Jonathan’s birth. There are so many things I wanted to write about, so many things I wanted to say and do before we made it here, but alas, here we are.

In actuality I’m pretty impressed that I haven’t gone in to labor yet as two of my babies arrived early. I did however have one “due date baby” who was nearly 8lbs so I’ve been praying Jonathan will follow down that path. The longer he stays put, the bigger he can grow, and the better off he will be for surgery. We are anticipating his arrival by the end of the week and open heart surgery (The Norwood Procedure) early next week.

Are we prepared for this? Absolutely not. Would we ever be prepared for this even if we had all the time in the world? I doubt it.

Some of this morning’s final preparations have included time on the phone trying to find some extra help for respite care for Ethan. We’re also working on finding someone who can complete a neuropsych eval on a nonverbal, developmentally delayed teenager as well as a psychiatrist who is able to see him. If anyone has any recommendations please, please contact me!

I have also been contacting various friends and acquaintances, to coordinate child care for my little guys. Thank you to everyone who has offered to try to be available if we find ourselves in a pinch!

We have been very fortunate to have found a nice home to stay in while we’re here in Denver. The boys are still adjusting to being in about 1/3 of the space they’re accustomed to and the downstairs neighbor has been more than gracious in tolerating their “cabin fever” and general little boy rambunctiousness.
We miss our New Life family who have been such a community of support but have found a “home away from home” with the Novation Church family. They have surely demonstrated what it truly means to be a “church.” In addition to friends and family, Dan’s employer and “work family” has been amazingly supportive and understanding of our situation during this time as well. We have truly been blessed by our “village.”

If you feel led to keep us in prayer our requests include:

• Complete and total healing for Ethan,
  Jonathan‘s heart,
  and Josiah‘s kidney
• Safe labor and delivery
• Health for whole family – if anyone is sick they will not be able to see Jonathan and I want my boys to meet their brother before he undergoes surgery (in fact anyone who is not up-to-date on vaccinations, especially TDAP/DTAP will not be able to see Jonathan in the foreseeable future due to the risk to his life should he contract a respiratory infection)
• Wisdom for the surgeon, doctors, and nurses
• Blessings on everyone who has been and will be caring for my children (especially my family who has been caring for Ethan)
• Additional resources and care for Ethan
• Peace for the entire family (me, D, our boys, grandparents, aunts, uncles)
• Safe and healthy labor and delivery for Jonathan’s cousin who is due to be born the same day as Jonathan!

We have created a facebook page to help us quickly provide updates once Jonathan arrives
Jonathan’s Journey

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