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

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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)!

The Calm and The Storm

I have intentionally been an absent voice during this entire process. I have not shared anything because I do not want to hurt you. It doesn’t take a psychology degree or ESP to see the pain in your eyes when I tell you about Jonathan’s plight. It tears me apart to see my friends, family, clients, hell even complete strangers hurt. This is not your burden to bear and I feel that the less I say the less likely I am to hurt you, which in turn means I don’t hurt myself.

One fall I took a fishing trip to Alaska. I was fishing in a seaside port town called Whittier. My friend and I were in a rocky cove with completely serene waters. So serene, one could peer down from the 30 foot cliff and see schools of salmon making their 10 to 15 minute laps in the pristine cove. When the salmon would enter the cove fellow fishermen would start calling out as to alert the neighboring fishermen that the Salmon were headed their way.

Until this moment, I had never seen or been a part of a team fishing experience. This was exhilarating. One after the other like dominoes collapsing on each other the fisherman would call “They are coming.” My friend and I followed suit and screamed at the top of our lungs and laughed when the school swam by. Our exhilaration caused us to miss the fish as we had inaccurate casts from being atop our 30 foot cliff. To get a more accurate cast on the salmon’s next lap, I climbed down the rocks to the waterline and precariously hung out at the 20 foot deep waters edge. I figured with the water being as calm as a lake, what is the worst that can happen? I fall in? Who goes fishing in Alaska and doesn’t expect to get a little wet? I continued to fish from my perch.

As time past the alerts from fellow fishermen, even my friend, became fewer and more spread out as everyone was packing up and heading home. I couldn’t blame them. The fishing was pretty slow but I didn’t fly to Alaska to get skunked. An hour or so later, I heard a very distressed man scream inaudibly at me. For the life of me I could not make out what he was saying. Soon after, another man came over and began screaming and motioning toward the sea. This was followed by my friend joining the couple and motioning for me to come up. I decided to climb back up the cliff and see what the commotion was all about. Maybe they want me to see a whale.

The serenity of the sea had recently been replaced by a “noise.” By the time I carefully scaled up the wet cliff that “noise” had turned into a roar. The previously serene cove had turned into a swirling, tumultuous ocean that had engulfed my precarious perch. I, being from Colorado and having limited ocean fishing experience, was completely ignorant as to how fast, violent, and unannounced the high tide coming in could be. Ten minutes later my perch was under 10 feet of debris filled water that was viciously crashing into the cliffs I had just scaled.

I have dreamt about that cove many times in my life. Sometimes in my dream I do not make it back to the top of the cliff. Instead, I fall into God’s washing machine at high tide. My life is currently at the waters edge and the tide has come in. This tide is a combination of raw panic, angst, anger, and fear of what is to come physically, financially, and emotionally. I cannot internalize this anymore I need to share. I needed my fellow fishermen’s help on that nearly fateful day in Alaska and today God called down to me playing at the waters edge to again warn me of my ignorance. God advised me that internalizing Jonathan’s plight will only make certain that I never escape the tumultuous sea. I cannot overcome this on my own. I know that I am going to have to share my experiences. More over, I know that I am going to have to lean hard into God. Harder than I ever have. I know that I have slipped into the sea. I will soon be drowning in my own emotions. But alas there is hope:

When He got into the boat, His disciples followed Him. And behold, there arose a great storm on the sea, so that the boat was being covered with the waves; but Jesus Himself was asleep. And they came to Him and woke Him, saying, “Save us, Lord; we are perishing!” He said to them, “Why are you afraid, you men of little faith?” Then He got up and rebuked the winds and the sea, and it became perfectly calm. The men were amazed, and said, “What kind of a man is this, that even the winds and the sea obey Him?” (Matthew 8 23-27)
I am truly sorry if my future posts ruin your day, hopefully they can become a bright spot.

Every, every minute.

I don’t remember when or at what age I stopped keeping track of my birthday adventures. As a kid I could recite back every birthday celebration from every previous year. A few still stand out in my mind like my 8 yr old princess party,  traveling as an unaccompanied minor to visit my grandparents for my 10th birthday, or my joint “sweet sixteen” slumber party with my BFF. I also particularly remember my 24th, 29th, and 30th birthdays. Somewhere in there though, the rest of them become a blur.

Last year I spent my 35th birthday with my BFF when her husband so generously flew me (and 5 month old Elijah) to NY to celebrate her 35th birthday (a few days before mine). It was such an amazing time that I will forever be grateful to both of them for.
At the time I certainly did not anticipate how this year’s birthday would be spent. I never imagined I would be pregnant again, much less in the current situation we find ourselves.

This year on my birthday I attended an early morning fetal echocardiogram. Danny and I then spent another hour or so meeting with the cardiologist who will follow us locally when we’re not in Denver. I went into the appointment with a faint glimmer of hope that they would be like “surprise! Things are looking better!” Alas, that wasn’t the case, if anything, things were slightly, just by a hair, worse.

The doctor didn’t tell us anything we hadn’t already heard, we simply rehashed it, and he gave us time to ask any other questions we’d thought of. Unfortunately no one has answers for the questions we have. When will we be able to hold him? Will he be able to breastfeed? Will he need to be on oxygen?  Will he do ok at this altitude? Will he have complications? Will he live? Will he thrive?

The initial outlook is surprisingly good. The doctor told us to look at it like this: getting through the first surgery is the hardest part then the first month in the hospital and getting home are the biggest hurdles. The next hurdle is the first six months and getting through the 2nd surgery. Then after that things usually smooth out until the 3rd surgery. From there, many kids live relatively normal lives.

But then it starts getting hairy again. The working right side of the heart that Jonathan has is intended to receive unoxygenated blood from the body and pump it to the lungs at a low pressure. The left side of his heart that he is missing does the job of receiving oxygenated blood from the lungs and pumping it at high pressure to the rest of the body. The goal of the 3 surgeries is to replumb the heart so that the right side of the heart does the left side’s job. Essentially the unoxygenated blood will bypass the heart and go directly to the lungs. The right side of the heart will then receive the oxygenated blood and pump it to the rest of the body. Therefore you have the “low pressure pump” doing the job of the “high pressure pump.” This extra work on the heart can cause people to go into heart failure at young ages like 40 years old, 20 years old, even in the teen years.

I’m not going to lie, that’s a hard pill to swallow. I’m 36 and Danny is 40. Those ages sounded so old when I was 18 but it feels pretty young now. We have babies for goodness sake. Life is barely starting! Obviously it’s not an outcome that any parent wants to hear for their child.

In reality, there are so many tragic things that can happen to a parent’s child, during their lifetime: car accidents, addictions, disease. All of these things can unexpectedly shorten or decrease the quality of your child’s life, at any time, any age. I suppose if I had to pick I’d rather my child have a quality life in the time he has than grow up to be a drug addict who never finds peace or happiness.

I guess this is a bonus that we now have that perhaps other families don’t have. We will have to first learn ourselves, and then teach our children to live life to the fullest and take joy in every moment. I’m reminded of a line from Thornton Wilder’s Our Town.

“Oh, earth, you are too wonderful for anybody to realize you. Do any human beings ever realize life while they live it–every, every minute?”

Perhaps Jonathan’s life will be short, but perhaps any of our lives will be shortened. There are no guarantees.
I hope I never take another second for granted. I hope to teach my children not to take one single moment for granted. I think that’s what it means to live a life with no regrets. Not to live carelessly and recklessly, refusing to learn from mistakes because YOLO (you only live once) nor to live so cautiously as to the pursuit of no passion; but to live every moment of sorrow and joy, taking it in fully and wasting nothing.

“If you are not afraid of dying, you will not be afraid of living.” –@pastorbrady

The Road Ahead

It has been a month that we’ve been living with our world wildly attempting to spin off its axis. Some days are better than others. Sometimes I even notice that several days in a row have slipped by where I haven’t cried. Today was not one of those days, neither was the day before, nor the one before that.

When I learned to drive I was taught to always be aware of my surroundings but to focus on where I was going. Take notice of the disabled car or accident on the side of the freeway but don’t stare at it. Why shouldn’t I look longer than a quick glance?
Because we inevitably steer toward what we’re focusing on.
When someone crashes into a police cruiser with its lights flashing on the side of the road it’s not usually because they didn’t see it, it’s because they were looking right at it.

As a 16-year-old I had a hard time staying in the middle of my lane. I would look down at the painted lines on the road to determine where the car should be. Soon I’d drift too far one way, then too far the other way in my attempt to correct. I learned that I shouldn’t be looking down, focusing on the guide lines. I needed to look up toward where I wanted to go. When I kept my eyes always focusing on where I needed to be, in the center of the road ahead, staying evenly in the lane was an easy task.

I still have to remind myself of this technique when I am driving through a particularly bad rain or snow storm. When the weather makes it difficult to see the road I’m not always sure that I’m in a lane and driving where I should be. The temptation for me is to look down to try to determine where the stripes on the road are. Then instead of guiding me in the right path I’m suddenly struggling to keep my car straight and I’m not paying attention to potential hazards ahead. I must remember to look beyond the swirling, blinding snowflakes and focus on where I need to go. I get out from behind the car that is swerving in front of me and find a vehicle that is driving steadily in the direction I want to go. I focus on that car. It keeps me on the road, headed in the right direction and I can see the pitfalls it encounters before I get there.

It’s so easy to get focused on all of the things that are completely beyond my control right now. I find myself feeling overwhelmed and sinking into despair.
What if we can’t find a place to rent in Denver? What if we find a place but it turns out to be a disaster? What if we rent a place, then the worst happens and we don’t need it anymore?

The chance of our baby surviving surgery is higher than the chance of not surviving it, but the reality still exists; what if we’re that one family out of ten who loses their baby?
I think about the surgery. I think about what my tiny baby will have to endure, what he will look like and the pain he will be in. This is when being a nurse does not come in handy. I know too much. I know what open heart surgery entails. I know that children are often undermedicated for pain. I know I can’t bear to see my child go through this.
Ethan was born with the assistance of vacuum extraction. The resulting bruise and swelling to his head was so magnificent I couldn’t look at it without crying. I kept his little newborn cap on for the sole purpose of hiding the injury from myself because I couldn’t bear to see it.
How in the world will I bear this? I think about it and I sob as the pain, grief, and fear overtake me. Then I realize that Jonathan can probably feel my sadness. I don’t want that kind of sorrow to settle into his being. I want him to know joy, love, hope, and peace.

I wrote down a word that was spoken during church on Sunday (@hendersongirl)

We will keep our eyes fixed on You. You will finish what you began.

It’s time to refocus and get my eyes fixed on Jesus.
I feel like this is a lot easier said than done. I am not even sure how to pray anymore. It’s not like I’ve never been through anything hard before. Until about four months ago I honestly believed that I had already endured such difficult situations that I had been adequately prepared to face any trials the future may hold. Still, I find myself crying out “Jesus where are you?”

Where do I want to be? I want to be with Jesus. Focus on Jesus.
Where is Jesus? Jesus is seated at the right hand of the Father. (Ephesians 1:20)
He is seated at the right hand of the Father because the work is already done.
There is no reason for me to panic because none of this is a surprise to God. So I have to say “come Holy Spirit” and fix my eyes on comfort and healing; on the comforter and the healer.
Where do I want to go? At the end of this journey where do I want to be? I want a healthy baby. I want a son who is living life to the fullest. I want all of my sons to live life to the fullest, and Ethan weighs especially heavy on my heart already.
How do I get there? I don’t know how to get there, all I know is where to fix my eyes.

I wish I had something poetic or inspirational to share but right now all I can do is focus on the Lord instead of focusing on the wreck that I am trying to avoid.

If you think of it, pray for us, especially Ethan right now.

Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us.  We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne. Think of all the hostility he endured from sinful people; then you won’t become weary and give up.  After all, you have not yet given your lives in your struggle against sin….So take a new grip with your tired hands and strengthen your weak knees. Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong.
-Hebrews 12:1-4,12-13

Even If

 

They say sometimes you win some
Sometimes you lose some
And right now, right now I’m losing bad
I’ve stood on this stage night after night
Reminding the broken it’ll be alright
But right now, oh right now I just can’t

It’s easy to sing
When there’s nothing to bring me down
But what will I say
When I’m held to the flame
Like I am right now

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone

They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone

You’ve been faithful, You’ve been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You’re able
I know You can

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone

It is well with my soul
It is well, it is well with my soul

 

“Twin Cousins” (Gender Reveal Video)

Did I mention that Jonathan shares a due date with his cousin?
Here’s a fun video from our joint Gender Reveal

https://wwww.instagram.com/p/BQvp_vFj2ev/

(My sister hand makes the gender reveal footballs  www.etsy.com/shop/Babykees )