#heartmamadiaries | DECEMBER 2019 UPDATE

Yesterday, Iver had his first echo in almost 6 months. Leading up to it, we tried our best to explain to him what to expect from his appointment, but he was very fixated on getting another “big bandaid”. He’s old enough now to remember that scary, painful things happened to him at the hospital. It breaks my heart that this is a part of his story. Iver’s/our journey has been full of ups and downs and I need to work hard to choose to live life with joy and hope despite feeling like we are always taking one step forward, two steps backward. 

That being said, when we walked through the doors of the Stollery cardiology clinic, it was the first time Iver seemed to relax. All this 3-year-old anxiety turned into 3-year-old courage when he recognized where we were. There are no owies in this part of the hospital. We went through once again everything that would happen during his appointment, and he finally seemed to believe me. I know many of you were praying for his anxiety, and I want to thank you so much. Iver was a complete rockstar. He was cooperative and calm the entire 3 hours that we were there.

However, I know the drill by now. When his echo tech tells me she’s sending the doctor in to take a few more pictures, I start preparing myself for bad news. It’s been 13 months since his 3rd open heart surgery, this last time receiving a brand new conduit in place of the pulmonary artery he wasn’t born with. Following this surgery, the gradient level (the measurement of the blood pressure flowing through his conduit) had improved greatly.

Before his surgery, the gradient level was up to 79. A normal person’s heart has a gradient of 5. After surgery, the gradient through his new conduit was about 14 (if I remember correctly!), which was what we were hoping for. We hoped that this conduit would last him until he was around 10 or 12 years old. However, In July 2019 (8 months after surgery, and just over 5 months ago from today), we found out that his conduit was narrowing again, with the gradient level being in the 30’s. Yesterday, we found out that it has continued to narrow and is now in the 60’s. We don’t know why it’s narrowing. It just is. 

Iver’s cardiologist will be presenting him at surgical conference in the new year. She will get the whole team up-to-date on his situation, and together, decide when and what interventions will be needed. The hope is that they can try a balloon cath or a stent to open up his conduit and make it last a while longer, but given his history, a 4th open heart surgery may be in his future much sooner than we had hoped. Either way, we should be back in about 3 months for another echo, ecg and the whole shebang to see how he’s doing.

So, how am I doing? Well, since this is my blog/journal, let me tell you. It’s weird. It’s weird to have faith that things will be better, and at the same time, preparing for bad news. I think that I am so used to getting bad news, that part of me has to expect it so that I won’t be crushed when I do. We have learned that we need to roll with the punches. These things are out of our control. At the same time, we continue to have faith in God’s goodness and faithfulness, despite the horrible things that happen while we are living in this fallen, broken world. 

My heart is sad. So sad for Iver and the thought of him going through another surgery while he’s so young. And then, it’s grateful. Grateful for the normal life he is living because of the interventions he has needed. I’m scared because looking at him, I can’t tell that there’s anything wrong with him. People tell me all the time that he looks so amazing and no one would ever be able to tell all that he’s been through. And I know that they’re being kind and are amazed at his strength and energy. But it often makes me want to drop to my knees and sob, because that’s the scariest part of it all. I can’t tell either! It’s so conflicting and confusing to be thankful for it, and feel so helpless because I know that even as his mother, I wouldn’t be able to tell that his heart is failing him until it’s too late. And then I’m grateful once again for how closely he is being followed by his incredibly smart and gifted medical team. And I’m thankful for health care. And I wish that I could have fully rejoiced when we were allowed to wait 6 months between echos, but I couldn’t. And this is why. The anxiety that is always in the back of my mind takes up more room as more time goes on between appointments, wondering how bad the narrowing is getting, how fast it’s narrowing, and how I would ever know by looking at him. 

But, life moves forward, and Iver, if you know him, is SO full of life. He has more energy and spunk than most kids I know, and I’m thankful that he really doesn’t have any idea what’s going on. He needs to be a happy, energetic kid, and I have the great honour and privilege of being a fun mom for him. So yes, I’m struggling with all of these emotions, but God is so good and He lets me pour out my heart to Him so that He can carry this for me. He gives me the strength to move forward with joy and hope, and I could NOT do this without Him. 

Please continue to hold Iver and all of us in your prayers. We don’t know what this next year will look like for our family, and it’s hard. Thank you for allowing me this space to put to words my thoughts and feelings, it’s truly healing in and of itself. 

#heartmamadiaries | RAW

Five months. Five months since we last stepped through the doors of the Stollery Children's Hospital. It had been the longest stretch of time that we had ever gone between Iver's cardiology appointments since I was 20 weeks pregnant with him. And while it was a blessing, this larger gap came with many struggles.

I think I have almost become dependent on Iver's echos because they can tell me what's *really* going on with his heart. It's hard for me to trust my own eyes. When people comment about how good he looks, how healthy he seems, or how you would never know all that he's been through, I completely agree, but there's a part of me that wants to say that it doesn't matter. It doesn't matter how good he seems, we might not have any clue that his heart is failing him. I know this reaction is still a direct response to his emergency at four months old, but I find I'm relying heavily on those echos for peace and comfort. So, the longer wait between appointments was hard for me. Despite all of this, I did my best to remember to give it all over to God. The fear, the anxiety, that search for peace. But to be honest, I'm quite the work in progress and often try to handle all the feels on my own. (Spoiler alert, that doesn't work very well!) I need to continue to trust God to write his story.

As soon as I stepped foot into the hospital, I felt my anxiety heighten. The rollercoaster of memories flooded my mind and my heart felt overwhelmed. I'm used to receiving bad news from echos, and I didn't want to get my hopes up too high, only to be completely crushed. But, I had work to do. This isn't all about me and my struggles with how to handle these appointments. I needed to be strong for Iver, keep him entertained, and try not to let him figure out that I was scared. I needed to act cheerful in hopes that he will trust these people, these doctors and nurses and echo techs and everyone in between, and believe that they are safe, that they're trying to help, that they won't hurt him. But it's hard, because he's old enough to remember and know that the hospital certainly does not feel like a safe place sometimes.

The appointment was a long one, at over 3.5 hours, which doesn't help me! Longer appointments have almost always meant bad news. And of course, it's hard on Iver who eventually reaches a point where he just wants everyone to stop touching him and go home. His safe place. We watched a TON of screentime (which, if you have a child with medical issues, you know all the rules go out the window for appointments and hospital stays), and ate some chocolate chip cookies. That worked for a while, until it didn't. He. Was. Done.

After 3.5 hours we finally met with Iver's cardiologist and received the test results. His heart function is looking good, his aortic arch is looking good, but his pulmonary conduit (artificial pulmonary artery) is looking *slightly* narrowed once again. His cardiologist said that she really hopes his conduit lasts, and that she would be so sad and disappointed if it doesn't. However, it's such a slight narrowing that we do not need to proceed with any further testing or interventions at this time. We get another 6 months in between appointments and we keep doing what we're doing. The daily Aspirin, watching him for signs of shortness of breath or tiring out easily. 

While it's definitely not the news I was hoping for, it's still good news. Having another 6 months is a blessing. I have #heartmama friends who are in the thick of really scary things right now, and I must focus on gratefulness for how far the Lord has brought us. Iver is full of energy (maybe too much haha) and joy! He is living a happy childhood, and every day is a blessing.

As these 6 months go by, my goal is to talk with God every day about my fears and anxieties, and lean on Him. I will trust in His goodness, and the story that He is writing for Iver and our family.

Wow. I think I'm going to do a rare blog post for this, as I was not expecting my Instagram post to be this long! Journaling is therapeutic, and I appreciate you taking time to read this. Writing these posts help me acknowledge my issues, and work through them and turn towards a healthier mindset. This is me, being raw. I'm not going to pretend like I have it all together and I'm this super strong woman who deals with everything calmly and with ease. It's hard. And I hope you understand that every ounce of my strength comes from God.

Please keep Iver, his siblings, and Mark and I in your prayers. Please pray that his conduit stays open, and that it lasts for years to come. Thank you! Xo.

#heartmamadiares | NEVER TYPICAL

Today marks exactly 4 weeks since Iver was discharged from the hospital after his 3rd open heart surgery. In case you missed it, he got a new pulmonary conduit put in. Yesterday we had a full day of follow-up appointments in Edmonton. The most amazing news I have to share is basically everything you can see for yourself. He's doing amazing. He's even ahead of the curve in his development, which is extra awesome considering all that he's been through, and all the time he's spent in the hospital. 

However, there is some not-so-great news, and that's what we can't see with our own eyes...

Iver's echo results showed that there is a significant narrowing in his new conduit that wasn't there 3 weeks ago at his last echo. The doctors still don't know why exactly this has happened. It could be something on the outside putting pressure on the conduit, it could be a blood clot forming (but likely not), and the most likely case is that the graft is folding in on itself.

This is quite uncommon, but of course, Iver seems to like to keep us on our toes. I'll be honest, it was really hard to hear. Going into the appointment, I was wondering if we may be told that instead of his regular 3-month check-ups, that they might say we would see them again in 6 months! So, needless to say, this feels like a giant step backwards. I find it especially hard that once again he looks so amazing, and we would never know that something was wrong with his heart. It's certainly scary!

Iver's case will be presented at surgical conference once again on Tuesday. The whole team will review his images and his history, and decided what to do next. His cardiologist thinks that what most likely will happen is they will try to insert a stent to re-open the narrowing. Iver had a similar procedure done when he had his emergency at 4-months-old. When his aortic arch repair re-narrowed, they tried balloon catheter procedure, that was unfortunately unsuccessful. He needed that second heart surgery anyway. We're praying that a stent is the decision that will come out of surgical conference, and that it will be successful!

So. The rollercoaster of emotions is at large in me. But again, I can't help but look to God in thanksgiving. His hand of protection is so clearly over Iver's little life. He is guiding the steps of his medical team, and we just want to glorify Him through this! It's not easy, but I am fighting to choose gratefulness when all the other thoughts want to take over my mind. It is through God's strength alone that I can keep moving past this feeling of complete exhaustion.

We should know more information hopefully by Wednesday. I'll keep you updated as best I can. Please pray for him, and for us. Thank you so much.

#heartmamadiaries | FLASHBACKS

Iver, two years ago on his 3-month birthday.

I LOVE Facebook flashback pictures for obvious reasons (hello cutie pants!) but if I'm being honest, when I see these perfect pictures of Iver from the weeks leading up to his emergency, I am hit with anxiety like a ton of bricks to the chest. I started writing all of this on Facebook, and thought it was really a long journal entry or blog post. So here I am once again, after all this time. Just needed to get this out!

How could we have possibly known that his aortic arch had re-narrowed? He looked like a healthy baby. He acted like a healthy baby. He was knocking those milestones out of the park, despite all he had been through a few short months before. We had no idea what we were about to face, that I would watch my 4-month-old baby go into pre-arrest. That would would become terrified beyond what we could ever imagine.

And then, I remember. With almost disbelief I remember how we made a last minute decision to drive to Edmonton to celebrate Juliet's birthday. I remember how on our two hour drive to the city, Iver's little cough was suddenly a really scary sounding cough. I remember him crying and crying in his car seat, which was so unlike him! I remember not wanting to spoil Juliet's birthday by going to the hospital, but feeling that nudge that I really should go get him checked out. I remember feeling guilty about ruining our fun plans.

I remember seeing the infant chest x-ray contraption for the first time, and the nurse telling me about how most babies cry really hard, but the occasional baby would fall asleep in there. I remember laughing about it and telling her that if Iver did that, I would need to take a picture for Mark. And then I remember thinking he did fall asleep. I remember his arms going limp and his head dropping to his left side. I remember starting to laugh about him being one of those few babies who was actually falling asleep, until the x-ray tech suddenly ran towards him and started unbuckling him out of the medieval chest x-ray contraption. I remember the nurse grabbing him and running down the hallway and me, running after her, asking what was going on. I remember not knowing what pre-arrest meant. I remember feeling guilty for laughing about him falling asleep, or at least, I thought he was. I remember a swarm of doctors and nurses surrounding Iver in the emergency room. I was standing behind them, feeling helpless. I remember hearing about resuscitative drugs and prepping for CPR. I remembered that Mark and the kids were off playing at the indoor playground.

Then I really don't remember anything else until he was settled. The resuscitative drugs had worked. I was numb. I then remember calling Mark at some point. I remember asking if I could get a breast pump because I was so full of milk. I remember Mark and the kids being there, and finding out that the quick x-ray photo showed that Iver's heart looked too big. I remember Mark and the kids leaving again, and not long after that, moving up to the Pediatric Cardiac ICU once Iver had been admitted.

I felt safe up there. We had been there before and knew how incredible the team was. I remember feeling so hungry. I hadn't eaten since the morning. Iver was stable, and in good hands. I took the opportunity to run downstairs for a bite to eat. I had bought my food and sat down for only a moment before I saw the PCICU number pop up on my phone, calling me. "You need to come up here right away. He went into pre-arrest arrest again." No. No no no no no! I don't remember if I waited for an elevator or ran up the stairs. But I do remember running into the ICU and seeing a flat line on his monitor. Like a movie scene, a couple of the nurses rushed towards me embracing me, and reassured me that he was fine and the monitor wasn't hooked up for a brief moment as they were doing something. The resuscitative drugs had worked again. I remember feeling guilty that I went to get food. That I wasn't there. He could have died and I wouldn't have been there.

Fast forward to finding out that his aortic arch repair had re-narrowed from scar tissue, and that RSV and all the crying had pushed him over the edge. He could have gone into arrest, every so quietly in his car seat. We would have thought he was sleeping. But, he didn't. God orchestrated our circumstances, through whispers and planting ideas in our heads to go to Edmonton on that specific day. Despite my guilt about ruining Juliet's birthday plans, he continued to nudge me to the point where I couldn't ignore it: I needed to take Iver to emerge. He saved my son.

And this, friends, is what goes through my mind when I see sweet pictures of Iver at this age. All in about 2 seconds of what feels like flashes of movie scenes that quickly run through my mind. And I feel like I can't share his story enough, and point to my incredible God. God still has plans for Iver on this Earth. I don't know why he was born this way, but I do believe that God cries with me, and that He can turn anything into something beautiful.

I also want to take this opportunity to thank everyone and anyone (because I know there are so many people who don't know us personally) who have prayed for Iver, or helped our family in any way over these past 2 years. It's hard knowing that I could never repay you for what you have done. It's overwhelming trying to remember everyone who has been there in some way for us, and to write personalized messages. I wish I could, and humbly ask that you would accept this as my most sincere thank you. I pray that God blesses each of you for your generosity and prayers. We are overwhelmed with gratefulness.

Ok wow! I was not planning to do this today, but here we are. A nap time well spent.

Rebecca.

#heartmamadiaries | THE FINAL WEEK

This week I had my last scheduled ultrasound and appointment with my OB. Little Iver is looking good, a slight drop in his weight curve, but they're not worried. He's estimated to weigh around 6lbs 9oz now, so he's growing and he's a good size, but definitely considered small in Westman standards! I'm starting to dilate a bit now, which is great! My body is prepping for delivery. 

Speaking of delivery, I signed my induction papers for Wednesday, August 24th (39w 5d). So unless baby has plans to make an appearance sooner, we should be meeting our little bundle 4 days from now! It's very exciting, and very scary. I am looking forward to no longer being pregnant, and I'm REALLY looking forward to meeting our precious boy, but once he's out, things get real.

My in-laws arrived in Edmonton today and were able to visit the RMH for a little bit, before driving home to Lashburn with Mark and the kids. They will be taking care of our sweeties while Mark and I await baby's arrival! It will be the longest the kids have ever been apart from me, but I am so thankful that they are in great hands!

Please continue to pray for us as I get closer to delivery, and as the kids and I are separated. I have enjoyed my first night on my own, but I truly miss them already. It's one thing to get a few hours break to myself, but another to be here alone for a couple of days!

Next time I post an update, it should be with exciting news!

Thanks again to everyone praying for us!

#heartmamadiaries | VISITING THE NICU & MATERNITY WARD

On Thursday afternoon, my parents drove from our house to Edmonton to visit the Ronald McDonald House and babysit the kids. Mark and I took the RMH shuttle to the Stollery Children's Hospital to meet with our amazing social worker and take a tour of the NICU. We have almost completed our application to the Kinsmen Telemiracle Foundation in hopes of receiving some funding for our medical expenses. We hope to send it off by Monday.

Please pray that our application for funding will be accepted.

After working with us on our application, our social worker took us on a tour of the NICU where Iver will be spending the majority of his time in Edmonton. The unit is very small and cramped with hardly any privacy. I knew beforehand that this would be the case, but I wasn't expecting the lack of comfort. Every bed has room for only one office-like swivel chair beside it. There are I believe 3 larger, more comfortable chairs for feeding and snuggles that are shared between about 18 other babies. If you want to have some skin-to-skin time or snuggles with your baby, you need to ask for a turn with the chair. This really just breaks my heart. I was at least expecting to be able to hold him and have skin-to-skin time as often as I pleased, or as often as Iver was able. It was a pretty emotional experience imagining myself there with Iver for weeks and weeks. I know it will be a challenge for me to take breaks from the unit and come back to the house for meals and sleep. I know in my head that that is the healthy thing to do, but I still have a hard time wrapping my heart around leaving my baby.

Please pray for my peace of mind, strength, and to remember to take this one day at a time.

In other news, we had a test-run to the maternity ward on Thursday night. As most of you know, I've had some major issues with my gallbladder and was hospitalized for 4 days at the end of May with a bad infection. Since then, I've been on a 0-fat diet. Well, Thursday night I had an attack for the first time since May. It was pretty scary, and surprising. After quickly packing the hospital bags, just in case I went into labour, we rushed to the hospital at 2:30am. They sent me straight to labour & delivery and hooked me up to a non-stress test. Thankfully, the attack subsided really really quickly (usually they will last an average of 6 hours) and baby and I both ended up being fine. Just a small flare up which the doctor seemed to think was simply due to hormone changes as my body gets ready for delivery. We left the hospital at 7:00am, and headed back to the house for a much-needed nap.

Please pray for no more flare ups!

I have an ultrasound booked on Tuesday, and an appointment with my OB on Wednesday. I'll be 39 weeks on Friday, and if everything with my pregnancy remains the status quo, the plan is still to induce me on Monday, the 22nd.

Please pray for a healthy last week of pregnancy and for continued peace as we get closer to my delivery date. 

Please pray for the medical team that will be working with myself and Iver, and for an uncomplicated delivery.

Thank you for your prayers! Not much longer now...

#heartmamadiaries | LIFE AT THE RONALD MCDONALD HOUSE

For those of you who don't follow my instagram or have me as a facebook friend, I think a little blog update is in need! On Monday morning we packed up the van and kids and pulled out of our driveway ready to relocate to Edmonton. We had our hotel booked at $77.00/night, and were still holding out hope that we would hear from the Ronald McDonald House ($12/night) in the next couple of weeks. Well, we we didn't even make it outside of our little town when we got the call! The RMH had a room ready for us! We laughed and I cried and we quickly canceled our hotel reservation and hit the road! God is so good you guys! I can't say it enough!

Since arriving, we have been absolutely blown away by everything they do here at the house. There are really no words. I honestly don't think you could ever understand it unless you came and saw it for yourself. I think the food alone would blow your mind. 

The kids have been having a fantastic time exploring and playing and making new friends. Being out of regular routine has it's novelties and a downside (meltdown central), but overall they're doing really great. We are so thankful to be here and have some special family time together before Iver arrives and things get a little more complicated.

And now, I'll bomb you with cute pics of the kids and our time so far at the RMH.

Stay tuned for another post update on appointments etc.

I'm much too tired to do that right now!

Thank you again for your cotinued prayers.

#heartmamadiaries | UPDATE

I started #heartmamadiaries primarily to keep track of things for my own records, but also to serve as an update to family, friends, and a support to other parents out there going through the same thing. I hope that above all, God is glorified through our situation and that I can spread a little CHD awareness.

We were back in Edmonton today for some more prenatal appointments...

On Friday afternoon we heard from the Ronald McDonald House, and they unfortunately do not have room for us at this time. We are still considered high priority near the top of their waiting list, but in the meantime we will be staying in a hotel suite. The RMH was able to book us a fantastic one-room suite at a great rate ($70/night) that included a hot breakfast, a light supper, and free laundry. The hotel has a pool and our room has a kitchenette with a full fridge, 2 burners, a microwave and a dishwasher. All dinnerware and cutlery are provided. Needless to say, we were very impressed with the hotel. But, of course, it's still nowhere close to the $12/night that RMH can offer. 

Please pray that RMH will have a room for us ASAP.

My appointments went really well. Iver is growing steadily and is now weighing about 6lbs 1oz! This is great news, as he has passed the minimum weight requirements for his open heart surgery. We are thanking Jesus for getting him so far and we continue to pray for his health! The bigger the better for what is to come. Other than his heart, everything looks great for Iver. And as for me, things are right on track. I am not yet dilated, so we got the "OK" from the doctors to come home for a few more days before needing to relocate long-term. Just a few more days at home means saving close to $400 in accommodations alone. We will, however, relocate sooner if a spot opens up for us at the RMH, or if anything changes in my pregnancy. 

Please pray that my pregnancy will continue to progress without complications, and that Iver continues to grow on a healthy curve.

36w 5d

In other news, my parents are slowly making their way from Ontario to Saskatchewan in their motorhome. They're due to arrive at our home in Lashburn sometime Sunday evening. We are so thankful that they and my in-laws will be able to be with us during this time. 

Please pray for safe travels!

We also have a HUGE praise to report! Through some amazingly generous people, God has provided us with some financial support. We are so grateful for the willingness of those who have heard His prompting, and allowed Him to use them.

"Now all glory to God, Who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think"

Eph. 3:20

I'll do my very best to continue to post updates as Iver's story continues to unfold. Thank you again for all your support and prayers. 

#heartmamadiaries | TO BE TRULY GLAD

Being pregnant with a little heart baby can be really lonely. I am the only person in this world who knows my baby, who feels his every movement, and is constantly reminded of the inevitable: the day is soon approaching when Iver will have to leave the safety of my womb, and enter the world as a sick baby. The reality of the situation is constantly with me, as constant as I carry him every moment of every day. And I am the only one.

I can't expect anyone to feel the way I feel. Sure, our family and friends are heartbroken right along with us, and I don't want to dismiss or minimize their feelings, but I really don't think anything compares to a mother's heart. Anything. With every little move that Iver makes, I am reminded of him. With every twinge of back pain, every episode of heartburn, every time I have to wake up and pee in the night, and every glimpse of my ever-growing belly, I am reminded of him. I am reminded that his heart is broken. I am reminded that he will need open heart surgery to survive. I am reminded that I may not get to hold him when he is born. I am reminded that our new temporary home will be the NICU. 

it.

is.
hard.

I can't even imagine the emotions I will be feeling during labour, let alone when I need to hand him off to the medical staff. Let alone when he will be transferred to another hospital and I will not.

But you know what? Even though at moments I have envied you, you who are not carrying around the same weight as I (figuratively and literally), I give thanks.

Because although my heart may be heavy, it is FULL.

Iver is mine. God chose me to be his one and only mother when He created this world! Only me. It is an honour, a privilege, and a gift to be his mama.

Our church was going through a church-wide study on Philippians when we found out about Iver's condition. Let me tell you, it is MUCH easier to say "Amen!" to having joy in all circumstances when your circumstances are pretty average. Throw a CHD into the middle of your life and finding that constant joy certainly becomes a struggle.

For a while I was really feeling guilty for not feeling joyful all the time. Like I was somehow failing. But that's such a lie. I've learned that having joy in all circumstances isn't about being happy and cheerful every second of my life.

It's about having JOY in the LORD.

I can be crying my heart and eyes out and still be joyful in Him. For He is GOOD. I can feel like my heart is being ripped to pieces for my baby, but still raise my hands and praise The Creator. He has proved that He is on my side, and I can joyfully trust in Him during times of sorrow. Does that sound backwards to you? Maybe it does, or maybe you already know this unexplainable joy. If you don't know it, my hope is that you find it. That you find Jesus and the hope that He promises us!

1 Peter 1:6 says:

"So be truly glad. 
There is wonderful joy ahead, even though 
you must endure many trials for a little while."

This. This is what I cling to. When the lies are trying to pull me down, this is the TRUTH that I hold on to.

It doesn't mean that I don't cry. It doesn't mean that I am not heartbroken. Because, oh, I am completely heartbroken. But it does means that I have HOPE. I can be truly glad that Iver is in the Lord's hands. I can trust that there is wonderful joy ahead, despite the knowledge that there are many trials to come. Soon. Most days I wish I could do something to stop it. I wish I could mend Iver's heart. I wish this wasn't happening. But I know there is no use. There is absolutely no use in spending my time and wasting my thoughts on such things. The only useful things I can do are hope and pray.

Will you join me? Will you hope and pray with us?

For that, I would be truly glad.


Please Pray For:

• A room for us at the Ronald McDonald House
• Funding from the Kinsmen Telemiracle Foundation
• Thaddeus & Juliet as we prepare to be separated for weeks
• Continued focus on and hope in God's truth
• The best possible outcome for baby Iver
• A short stay at the NICU

To see the previous post update about Iver, click HERE.

#heartmamadiaries | BABY IVER UPDATE (32 WEEKS)

On Sunday night we packed the kids in the van and drove 2.5 hours to Edmonton, where the Ronald McDonald House was able to set us up at a hotel for the night at a special reduced rate. The next morning, Mark dropped me off to head to a full morning of appointments, and took the kids to an indoor playground where they had a fantastic time!

Appointments & Diagnosis Update (with links)

My first appointment was with my OB, and everything went really well. He still plans to induce me between 39-40 weeks, and we're keeping Monday, August 22nd in our minds as the most likely date. Afterwards, I had an ultrasound, and Iver is looking great! He is growing wonderfully in all other areas expect for his heart. No surprises, and no changes, and lots of praise to God for that! Iver is in the 50th percentile for growth, which is perfectly average. He currently weighs about 4.5lbs.

My third appointment of the morning was a fetal echochardiogram (a fancy name for an ultrasound that focuses on the fetal heart). I spoke with the cardiologist about the results, and he is almost 100% certain that Iver has Truncus Arteriosus with an Interrupted Aortic Arch. Again, slightly different diagnosis than last time, but they are much more certain. Click HERE for the latest detailed information (as of July 4) on his diagnosis, and what life will look like for him in the first few hours and weeks after birth.

Mark and the kids met me back at the hospital after my echo was completed, and we all attended our multidisciplinary meeting. We spoke with a 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. It was very informative and we both feel as prepared as we can be for what is to come. And, thanks primarily to Happy Meals, the kids were amazing during the meeting! Thank you for everyone who prayed specifically for that!

What’s Next?

We are on the waiting list for the Ronald McDonald House, expecting to arrive at the very beginning of August, when I am 36 weeks along. That's only 4 weeks from now! I will be happy to get settled in and be close to the hospital just in case I were to go into labour a tad early. Although, I'm really not expecting to, as I went beyond full-term with Thaddeus and Juliet!

Our Social worker told us about the Kinsmen Telemiracle Foundation, which we have decided we will apply to. Here's part of what they do:

"When people can’t access the level of care they need at home, they must often travel to health care facilities in other parts of the province or country. And while the medical procedures are covered by health care, the patients and their families must pay for their own travel, meals and accommodations. By easing the financial strain, the Kinsmen Foundation allows families to focus on what only they can provide – love and care."

Of course, we hope that our application will be accepted to help offset some of the costs coming our way.

Please Pray For Us

• For a healthy and peaceful third trimester and a complication-free birth
• For Iver to be stable when he is born, and to be able to breath on his own
• For us to be able to hold Iver, if only for a few minutes, before he is transferred to the Stollery
• For a spot to be available to us at the Ronald McDonald House
• For our application to be accepted to the Kinsmen Telemiracle Foundation
• For the medical team who will be working with and operating on Iver

To see the previous post about Iver, click HERE.

#heartmamadiaries | TO THE MOMMA WHOSE CHILD WAS JUST DIAGNOSED

written by Lexi Behrndt June 24, 2015

View original post HERE

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.

#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!