28.6.16

#heartmamadiaries | TO THE MOMMA WHOSE CHILD WAS JUST DIAGNOSED

written by Lexi Behrndt June 24, 2015


View original post HERE
Flower
To the momma whose child was just diagnosed,
Sweet friend, I am so sorry. This is hard, hard, hard.
I know everything within you wants to protect your child. That’s a mother’s way, and when life serves up something that you cannot control, well, it’s just not fair. And it’s not easy. And frankly, it just sucks. Give yourself permission to feel that.
There is no manual for these things. Nothing that can truly prepare you for the weight of it all. Nothing that can prepare you for picture perfect dreams falling apart.
I know this is scary. It’s okay that your world is feeling a little crumbly. The day that the words fell off the lips of the white coat, they felt rehearsed and a little sterile. Those lips have spoken words like these a million times over, but when it’s spoken about your child, time stands still.
It feels a lot like a punch in the gut. Things like this happen to people, but only to other people. Not you. Not yours. Not your baby. It’s like all the commercials you’ve seen before, all the pleas for funding for research. You’ve even donated your $1 a time or two— all for sweet, little, nameless faces that could never be yours.
Except now, it’s a little too close to home.
Here’s what I’m not going to tell you…
I’m not going to tell you to stay strong. I’m not going to tell you to trust. I’m not going to tell you to wipe your tears, pull your britches up, and keep the faith. I’m not going to tell you any “at least”. I’ve been there, and I know that helps no one. Even when trusting and bravery and strength are the answers, they are answers you need to discover on your own and when you’re ready.
I’m not going to tell you to pray harder. I’m not going to tell you why this is happening to you. There are far too many people out there trying to explain the impossible in a world that is broken, when sometimes there are no answers. There may be answers for the “hows”, but the “whys” are sometimes too profound for our finite minds.
Friend, you need to know this, and I hope you already do, but I’ll say it anyway.
This is not punishment. This is not something you did. This is not consequence for bad actions. Do not blame yourself. Do not carry that. Do not hang your head in shame or guilt. Do not think of that baby and think of all the things you could have, would have, should have done to prevent this— all the things you could have done to stop the pain. All the things you wish were different, and then maybe life would be just right. Don’t.
Don’t let your heart be weighed down by heavy burdens of others. Poor advice. Well meaning insults and cutting words. Remember that we’re all learning and all navigating this strange, unpredictable world. Allow yourself to let those words fall as easily as you can. I know it’s hard.
Here’s the big thing— the big thing to hang your hat on when the doctor says those words. When the details play over and over and over in your mind for days, weeks, even years to come. Here is what I want you to tell yourself to lift yourself out of the deep pit of sorrow and guilt and anger. Here is where I want you to sit, and then stand.
A diagnosis defines a lot of things, but it doesn’t define love.
Love until your heart bursts. Love until you’ve run dry. Love for every day you are given, and love even if they are no longer in your arms.
You are brave. You are strong. You are so loved… And so is that child.
I know this is hard, hard, hard. I know.
But your love is bigger than any diagnosis, and that I can promise you.
So much love to you,
A Momma Who Knows.

22.6.16

#heartmamadiaries | BABY IVER - UPDATED DIAGNOSIS

Hello! Wow it's creeping up on close to a year now since I've touched this blog. I'm back again in hopes to make it easier for everyone to keep track of updates on baby Iver, as well as keep a little diary on our journey.



In case you missed the memo, we found out on Christmas day 2015 that we were expecting our third child! Fast forward 18 weeks and we found out we were having another boy! And although I always thought it was weird when people did this, we've decided to tell everyone that we have named him Iver. It's really helped the bonding process for us and the kids, and I know so many people are praying for him by name! Unfortunately (and fortunately!), the same ultrasound that revealed his gender also revealed a possible congenital heart defect (CHD). Since then, we have been traveling to Edmonton for all of my prenatal appointments and scans, and the plan is to deliver at the Royal Alex.

Just over a week ago on June 14th, our most recent fetal echocardiogram (a special ultrasound of baby's heart) revealed a change in Iver's diagnosis. It seems that Iver's condition is what's called Truncus Arteriosis (TA), plus a VSD and CoA. TA is quite rare, representing only 1% of CHD's. If you click on these "Truncus Arteriosis" links, you will be redirected to a document that I wrote (and by wrote, I mean mostly copied and pasted), highlighting Iver's specific heart issues. 


Iver will need to go on medication through IV immediately after he’s born and transferred to the Stollery children’s hospital within the first couple hours of his life. He will need surgery in his first week, and may need multiple surgeries depending on if they can fix everything at once or not.

In other news, we are now on the waiting list for the Ronald McDonald House in Edmonton. We are set to arrive when I am 37 weeks, but they can’t tell us until the Friday the week before if they will have room for us. However, once we are in, we can stay for as long as we need to.

In a little over a week, we are back to Edmonton for a full day of appointments. Mark will take the kids to an indoor playground in the morning while I meet with my obstetrician, get a full ultrasound, and another fetal echo. Afterwards, Mark and the kids will pick me up and we will all go to the children’s hospital for our multidisciplinary meeting. This conference meeting is to help put all of the information regarding Iver’s birth together for us. We will be talking with the perinatologist (an obstetrical specialist concerned with the care of the mother and fetus at higher-than-normal risk for complications), the cardiologist, neonatologist (doctor who will take care of me and Iver after birth) and the neonatal social worker. We will have the chance to ask all of our questions and learn more about Iver’s condition and care after birth. Following this meeting, the social worker will take us on a tour of the NICU. 


Thank you to everyone who have been praying for us! Please continue to pray for:
  • A healthy third trimester
  • No further complications with Iver's heart
  • A place for our family at the Ronald McDonald House
  • For all the medical staff who will be caring for Iver and mama
  • A smooth delivery without complications
  • Iver to be stable at birth. We would love to be able to hold him even for a minute before he is transferred to the children's hospital
  • Continued peace as we trust in Jesus!

We are trusting God in this and believe that His plans for us are GOOD! We are so grateful for every day we have with our son, even now during my pregnancy. We rejoice in Him and are filled with joy for this gift of life!