A Thousand Reasons

When life gives you 100 reasons to cry, show life that you have 1,000 reasons to smile.

Recently I had someone ask me why Chris and I chose to adopt a child like…that.  

As you can imagine, at that moment a million thoughts and responses swirled through my head. My child is not like that. Sure, he has a heart defect. Ok, several heart defects. Sure, he has a pretty significant scar on his chest. But, he’s not “bad” or “wrong”, which is what that implies. No kiddo with heart problems ---or any other health issue—is.

The same day I had this conversation I saw this quote posted by the mama of another heart kiddo. It is so true. When having a child with multiple, life-threatening heart defects, there are 100 reasons to cry.

There are doctor appointments— so many doctor appointments.

There are surgeries and complications.

There is watching numbers and levels.

 There is rushing to the emergency room.

There are the doctor bills.

There is trying to find the balance of taking care of the “sick” child and still being there for the “other” kid.

There are sleepless nights filled with worry.

There is waiting and unknowns.

There’s no doubt about it; it’s hard. It can easily get tiring and overwhelming. I think the “that” opinion and attitude happens when people can’t see past the reasons to cry. I know I’ve said this before, but this journey of adopting and our crash course in cardiology is one of the toughest things I’ve ever done. But, it’s one of the best. While, for his sake, we wish that Kai did not have to experience all of the meds, and pokes, and appointments, it has changed who we are in ways that I would never want to take back. I think life-threatening illnesses tend to do that to families. It’s probably cliché to say, but children who are faced with death have a lot of teach us about what it means to live.

That has given us 1,000 reasons to smile.  As strange as it may seem, we smile more now that we ever have. I think we have more to smile about. Or, we’re just much more aware about what we should be smiling about.  Of course, we smile about pink fingers and good INR checks. We smile about how Kai calls the Ronald McDonald House the Old MacDonald House. We smile at Kai each morning when he checks on his “playhouse”, which is really just a set of flags in the yard right now. We smile how each night at bedtime Kai asks if he can have cottage cheese for breakfast. Focusing on the smiling instead of crying is intentional. I think it’s the difference between having joy, rather than just happiness.

While life is incredibly hard with Kai’s health problems, he has brought more joy into our lives than is possible to articulate in words. But, one thing we've learned is kiddos with health problems - -kiddos like that are full of love and spunk and hope. And smiles!

Some of our reasons to smile

Wednesday appointment

Wednesday was Kai’s appointment at Mott Children’s Hospital. Because he’s still been experiencing cyanosis and other symptoms frequently, I left home early yesterday morning feeling quite apprehensive. As much as Chris and I are ready to figure some things out and have a plan, we’re not ready at the same time. It’s difficult to think about the possibility of Kai needing to go through additional medical treatments or procedures. To be honest, we’re ready for life to feel “normal”. Anyone with a child with chronic or life-threatening illness will understand that normal is relative. We know our normal will include administering what feels like an entire pharmacy of medication. It’s sad that our normal will include Kai being able to tell us how many mg of Coumadin he gets for the day or remind me that I forgot to give him his vasotec/enalapril.  Normal will include weekly blood work and restricted physical activity. But at least it won’t involve numerous emergency room trips, hospitalizations, or surgery for Kai.

Unfortunately, it looks like “normal” will have to wait for now.

Kai’s doctors don’t feel like they can let this go any longer. However, the situation and medical symptoms are perplexing to them. In fact, I was told on Wednesday that they’ve “never seen anything like this before”. Of course! So, right now U of M is consulting with Boston Children’s Hospital to come up with a plan. It sounds like the plan will include surgical procedures.  We suspect that this will start with another heart catheterization in the next week or so. Deep down, I think Chris and I knew that this was coming. It’s just disappointing. Kai is such a fun-spirited, lively, loving kiddo - even when going through medical procedures (well, minus bloodwork!). Our hope for him is that soon he will just be able to run and play and have fun like any other 3 year old.

On a positive note, Kai did well at the appointment, all things considered. He did not have any major “meltdowns” or moments of panic while there. With all of the trauma that he’s been through, this is HUGE! In addition to this, his pressures looked great. The functioning of his heart from the June surgery looks awesome (to clarify, the symptoms he is experiencing are not indicative of a problem with this last surgery.). So, while we know that Kai’s journey – our family’s journey- continues in a way that we were not expecting, we have so much to be thankful for. We’re thankful for the intelligence, compassion, and sense of humor his doctors have. We’re thankful for new friends and support systems that we’ve gained over the past several months and the friends and family that continue to support us. We’re thankful that we have a God that is keeping a close eye on us all and is teaching lessons about life that we could not learn outside of our adoption and medical story.

Make-A-Wish

So, I'm going to blame it on the pain meds...but I totally forgot in my last blog post to send out one last reminder for the Magical Wishes 5K tomorrow in Hamilton.The race benefits Make-A-Wish Michigan. 

Feel free to visit the FB page for more details and to register! 

https://www.facebook.com/magicalwishes5k

Also, if you're not interested in running or walking tomorrow, we would love for you to show your support for kiddos with congenital heart defects by sponsoring Chris! Naturally, I had to back out of the race, but Chris is running tomorrow on behalf of Mended Little Hearts West Michigan. Sponsorship money for MLH goes toward providing prenatal packs for families expecting babies with congential heart defects, providing care bags for children having surgery, educational materials, and so on. Just visit the sponsorship website and click on Kai's name under the "Select Your MLH Runner" dropdown menu.

http://www.mlhmi.org/MLH_Runner_Sponsor.php

Update

So, I realize that I still haven't posted an update on Kai after our last appointment at U of M. For those of you who have texted, emailed, or messaged me wondering how he's doing, we appreciate all of your love and concern for Kai! I promise I have not been intentionally ignoring you. I actually have been sick and feeling completely exhausted. We have been living in "survival mode" for the past 9 months since Kai has been home. My body couldn't handle  "burning the candle from both ends", so to speak, anymore and pneumonia has settled in. I have never had this before now but can say with absolute certainty that it is miserable! 


Unfortunately, life doesn't stop--especially life with a kiddo with significant health issues--when mom gets sick. So, I've been trying to focus my energy on doing what has to get done lately. So, emailing and texting have gone by the wayside. I should also apologize to our neighbors for our home;hopefully it does not look like it, too, has also gone by the wayside...scattered toys and bikes, dead flowers by the mailbox. Oh, and this...

Sam and Kai decided to make shakers with dried beans last week. Apparently, my precious children decided to throw the leftover beans into the yard. So, until I feel better, I guess we will have a garden. Of beans. In the front yard. 


Anyway, here are some details about Kai's appointment after he had some surprising cyanosis. We know that this will not share all of the details of this part of his story, but here is at least some information. He ended up with a battery of x-rays, pokes, and ECHO trying to figure out what was causing our little guy to turn blue after surgery. According to the cardiologist, the ECHO looked good as far as the surgical repairs are concerned. There are, however, some concerns about collaterals developing and rupturing. 

Because of all that he has experienced medically in his short life, paired with coming home only 9 months ago, we not only have to take his health conditions into account when making decisions, but also his mental and emotional well-being. For that reason, we are opting to do nothing but monitor him until August. No MRI. No heart catheterization. He needs time to just be a child... at home...and continue bonding. So, unless there are signs that things are negatively changing or progressing, we will wait until August to do anything else (aside from scheduled blood work and things of that nature). 

So, on August 12 we will head back to Ann Arbor and, hopefully, nothing surprising will come up before then!

Happy birthday!

I was going to send an update after Kai's appointment in Ann Arbor on Wednesday, but time just got away from me. Between doctor appointments and both boys' birthdays this week, it has felt like there has not been a minute of down time. Now that things feel like they're finally settling down, I'll give some details...but, I'm actually going to  share some pics of our birthday celebrations first!

Celebrating birthdays is always momentous, but this year was exceptional. We got to celebrate with this big guy for the first time! He quickly realized that birthdays are a pretty good deal. Cake, presents, attention ---he loved it all! 

It did our hearts good to have him home this year to celebrate. There aren't words that can truly express how much he has blessed our family. But, while that's so true, there was a wide range of emotions involved. Our minds can't help but question what his birth parents must be thinking, feeling, and experiencing. I'm sure they wonder where he is and what is looks like and what enjoys doing.  We grieve for them that they will never have the chance of knowing.

   A child born to another woman calls me mom. The depth of the tragedy and the magnitude of the                                              privilege are not lost on me." - Jody Landers

These "big days" remind us how honored we are to have him in our family and experience life with him ---even when he's spinning in circles while trying to put on pajamas after devouring birthday cake!

Happy birthday Sam and Kai. We love you to the moon and back!

On a totally different note...

 I just want to put in plug for the upcoming Magical Wishes 5K. For those of you who love to run or walk, this is a fundraiser for Make-A-Wish, a fabulous organization that grants  "the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy."  As a Wish family, we would love to see the streets of Hamilton packed with runners and walkers supporting Make-A-Wish! For more details, visit the race website:

https://www.facebook.com/events/1085236348168972/

If participating in the 5K is not for you, we'd love for you to consider sponsoring us (Chris and Jen). We are running on behalf of Mended Little Hearts of West Michigan. MLH provides resources and support networks for families dealing with congenital heart defects. Sponsoring is easy; just go to http://www.mlhmi.org/MLH_Runner_Sponsor.php and fill out the sponsorship form. Look for Kai's name under the "Select Your MLH Runner" tab. 

We appreciate your support!

Tomorrow

Tomorrow, we will be heading back to Ann Arbor with Kai. 

Last week Kai became cyanosed intermittently. Turning blue is a sign of low oxygen saturation levels. Naturally, since his surgery was aimed at reconstructing the right side of his heart so that blood could become oxygenated, blue was definitely not what Chris and I planned on seeing. We didn't think that low oxygen sats were really even a possibility anymore.

The doctors didn't think so either. In fact, as his primary cardiologist put it, " there is nowhere in his heart for blue blood to shunt to the systemic side anymore." 

So, we'll head back to our "home away from home" tomorrow and see if Kai's team can figure a few things out. On a positive note, he had chest x-rays done to rule out a return of the pleural effusion (excess fluid around the lung), which came back normal. This is a big deal because, if it had returned, those nasty chest tubes would have needed to go back in. So, at least no chest tubes tomorrow! 

Chest tubes or no chest tubes, he is thoroughly sick of all things medical. Terrified, actually. This afternoon we headed over to my grandparents' house; as soon as we walked through the door, Kai began sobbing. The last time he saw them was when they came to visit at Mott...he thought they were going to "bring me back a hospital." See what I mean?! He's convinced that everything and everyone is meant to inflict pain upon him.  I hate for him to have to endure more needles and machines and hospitals. 

On a totally different note, the beginning of July is bringing a lot of new and exciting adventures for our family.  We got to celebrate the 4th of July for the first time as a family of 4...Kai's first as a U.S. citizen! Fireworks and sparklers were a great distraction from medication and doctor appointments.

We also get to celebrate BOTH boys' birthdays later this week! Last year we got to send a present to the orphanage for Kai; I have a feeling that it is going to be much more enjoyable to get to celebrate it with him :) I'll be sure to post pictures this weekend!

We're Home

Really, let's be honest, the title of this post says it all...we're home! Actually, we got home late last night, but after a long day of waiting for test results, I was simply too tired to post!

Kai's chest tubes came out on Thursday morning and he is definitely a new man with these out!

He continues to be in quite a bit of pain, but it's good to see him wanting to get up and move around on his own. The first thing he wanted after getting his chest tubes was for Music Therapy to come and sing with him. I think they were impressed with his singing. It was loud.Very loud. They did admit that they've never had a patient sing that loudly before. So, the entire 11th floor got to hear him sing (or scream, depending on how you look at it) Jesus Loves Me! After his rendition, the nurses on the floor gave him a standing ovation in the hallway--which, you can imagine, he loved!

He also wanted to be up and moving to play in the playroom.

Although he had a lot of fun on Thursday and Friday, it's good to be home to sleep in our own beds and be back on more of a regular schedule. Kai was especially excited to see Ellie. The poor dog is a saint; he's been pestering her since the moment we walked through the door!

We are SO thankful for Kai's team of doctors, surgeons, nurse practitioner, nurses, and social worker. Through all of this (really, since Kai has been home from China with us), we have been so impressed with how knowledgeable, helpful, and caring they all are. I can say that they are not just a great medical staff, but great friends as well. So, it was hard to leave them last night. Really hard. But, we get to head back in a week to see them all again!

Thank you, too, for all of your support for our family as we continue on this journey!