Saturday, May 21, 2022

Update from My Follow Up Appointment

(we took Madeline with us to my appointment and she loved every minute of charming everyone she saw =))

As I mentioned in my last post, I was scheduled to have my follow up with my cardiologist last week on Friday. Upon arrival, I had another echocardiogram done first, but I didn't have to be put under for this one, so it was a much simpler process. 

At the meeting afterwards, my cardiologist wanted to know how much better I felt since the surgery. It was hard to quantify how much I have improved, since my mitral valve stenosis really just affected my "bursts of energy". (like I mentioned before-exercising, playing sports, birthing a baby, etc) I told him what I've been telling everyone , though, and that is that although I don't notice a difference daily, I definitely can tell it is so much better! My cardiologist said he wants me to "hold nothing back" for the summer; to do anything and everything I want to do, to basically "test" how much improved I feel. At the end of the summer/three months, we will meet with him again to discuss. He said that, with having had this condition likely for most of my life, I have no idea of what it is like to feel normal. (very true, and it all sure makes a lot more sense now!) His concern is that because I have always struggled, I won’t know what is actual improvement. 

Sadly, there was bad news. My valve leaks now, which we knew was a possibility. (they told us there was a chance ahead of my surgery, and then they told us afterwards that a leak developed during the surgery) However, after looking at the echocardiogram, he feels that the leak is worse than they even initially thought. That means the next time my heart needs intervention, I won't be a "candidate" for another valvuplasty surgery, but instead will have to have the valve completely replaced. (open heart surgery)

For those curious about the actual condition of my valve and the numbers and that sort of thing...the cardiologist said the valvuplasty surgery opened my valve from 1.1cm to 1.8cm. It is wonderful to have that improvement. For reference,  a "normal" persons heart has an opening of 4.5cm or better. 

A huge blessing is that the surgery helped me gain about 60% improvement in the opening, and that I am feeling much better when exercising/etc. And it really is a big difference. I literally felt like I was going to pass out so many times before in my life, when exercising/walking. Whereas now, the first time I went on a walk after my surgery, and the first time I did a workout, I felt out of shape, yes, but I felt good when I was done! I am starting to realize what people mean when they say, after a workout, "wow that felt good." I never felt that way before now!

Although the leak/future open heart surgery isn't what we would have chosen, we know Jesus will continue to take care of me. He saved my life by Madeline arriving early. I am so sure of that. (As a side note, John read the other night that a number of moms with this condition, die within 30 mins of giving birth, due to the change in fluids and exertion) The fact that I am even here to tell this story is still such a miracle to me! And we are thankful for the very first cardiologist at the hospital where I delivered Madeline, who insisted on an echo to get to the root of the issue. If it wasn’t for all that and the ensuing surgery that followed, I likely would not have survived another pregnancy. 

God is good all the time, even when the future is uncertain, and I am just really really thankful for the knowledge and belief of that. 

Thankyou all for caring and praying. We are so thankful!

-Chelsy

Friday, April 22, 2022

Easter Sunday and An Update

Good morning! I hope you all had a blessed Easter weekend and Sunday! Ours was lovely---sweet family times just the five of us, amazing service at our church, and then a big Sunday dinner with all of our local extended family.
Something was wrong with my phone camera so the pictures all turned out fuzzy, but they are priceless to me just the same! 
Many people have been so kind as to ask how I am feeling since my surgery and if I can tell a difference?! It is really hard to explain because, again, this condition didn’t affect me on a daily basis-it was only if I was exercising/playing sports/hiking, or doing something extremely strenuous like birthing a baby. :) So on a daily basis, no, I can’t tell a difference---I feel great, just like I mostly did before! I’ve started working out and that is going really well. I’m out of shape of course, but I don’t feel like I am going to die from the exercise like I would’ve pre-surgery. I rested very well for a week after my surgery and I think that also has helped me pop back quickly! 

I'll be meeting with my cardiologist for a follow up echocardiogram on May 13th, so will know for sure the current status of everything then. However, all should be well, as the doctors were happy with the surgery and how everything went.

In other news, my Bells Palsy is truly healing, and I am more happy about that than I can say! SUCH A BLESSING. I also got a temporary tooth as the implant process won't be fully completed until August (such a loooong production!) so I feel like I'm getting closer and closer to having my full smile back again and I could literally CRY with happiness. 
My parents came for a week after my surgery and took care of us. It was such blessing to have them here and the kiddos LOVED every minute!
Accidental matching with Gramps!
My four siblings still at home, got to come for a few days also and that just filled the boys' happy cup to overflowing to have their aunties and uncles here!
Can't believe Madeline is nine months old!
(check out her Cuddle & Kind Charlotte Dog, here! My kiddos LOVE these dolls!)
Such a little ham! =)
Flowers from my sweet former church family in Iowa.
Morning smiles!
Easter morning table. (pre food and people)
Table settings: plain white sheet for a table cloth, wooden coaster (I don't think mine is bamboo, it was gifted, but looks identical to this one!) toddler silverware & sippies courtesy of Walmart, toddler plates from Ikea, these gorgeous goblets, this white corelle, and other pieces from random and various places/gifts. 
Our first cookout of the season!
Snuggles.
Elliot was struggling with finishing his breakfast one morning. Axton went over, picked up his fork, and helped him finish, all the while speaking the sweetest little words of encouragement, "good job Elliot! You finished!" Melted my heart!
Love my babies.

And that's just a little pop in to say that we are well and thank you all for your kind well wishes and prayers! We are truly grateful for each of you.

Happy Weekend, friends. 
-Chels

(Note: all of the items linked in this post are items that I own and love. The Amazon links are affiliate links. Please read my affiliate disclosure here)

Saturday, March 26, 2022

Home and Recovering!

Our smiles say how happy we are to all be back together again. =)

Well actually, the kiddos smiles are all because Gramps and Nana were taking the picture and being hilarious. =) But truly it is SO good to be back home together and recovering from the comfort of my favorite place! I was released from the hospital yesterday late morning and now am posting this from the happy spot of my living room.

For those who are curious about the actual surgery I had, here is a little info! Valvuloplasty is when the surgeon inserts a very small, narrow, hollow tube into a blood vessel in the groin and advances it up and then through the aorta into the heart. The goal of the surgery is to then use the tissue "ballon" on the end of the tube to help open a stiff (stenotic) heart valve. I had two tubes inserted, one on each leg. So although it is definitely a big deal and there is recovery needed, I didn't have to be technically cut open. 
Subsequently, the healing process shouldn't be too rough, which is a huge blessing. 

The surgery took longer than was expected due to the doctors having some trouble crossing over from one side of my heart to the other. They started right at 11am on the morning of the 24th and finished around 1:15pm that afternoon. The cardiologist was happy with the surgery and said it was successful. We will meet back with him on May 13th for another echocardiogram and overall assessment.

So far I've had to take things for the pain a few times, but other than that it has been manageable. I'm not supposed to lift anything for a week, but I am able to walk around pretty well, which is kinda crazy if you think about my status 48 hours ago! I think the main difficulty this next week will be for me to remember not to do anything. I'm supposed to rest, however, it's really hard to stay put when one is feeling pretty good, and especially when that person has Bontrager bloodlines, haha. =) But my dear husband and family are taking care of me and running the house, and our church is bringing meals, so resting is what I am going to do! 

 Thankyou all for your prayers, messages, comments, and love. It truly means so much to us. 
Happy weekend!
 Chels

Thursday, March 24, 2022

Surgery Completed!


The surgery is finally finished. It took longer than the doctors expected but it was successful!!
Thankyou for your prayers!


Tuesday, March 22, 2022

Life Update and Upcoming Surgery

Finally, an update from us. Thankyou all for your prayers and for checking in! 

Many people have been asking about Madeline. Oh my, what a little fireball she is. "Small but mighty" is always what comes to mind when I try to describe her in a few words. She is still very petite- right at 12 1/2 pounds. I finally put away the rest of her 0-3mon clothes the other day and she is wearing 3-6mon currently! Her size is almost the only preemie thing about her though. I love to watch people watch her when I lay her on the floor, and hear their gasps as she promptly rolls over and over and over, moving the whole way across the living room in less than a minute. When one sees a baby this tiny, they don't expect the movement and coordination that she has, which is completely understandable! She is exclusively on bottles and I don't think solids are anywhere in her near future. But that is very normal for premature babies and although she doesn't weigh much, she has tiny little rolls around her thighs and she is healthy as can be! She is doing so much better with her eating and reflux issues and I am so thankful for that. All in all, she is a happy, healthy, and energetic little lass who seems to be just thrilled with her little life!

The boys of the family are doing great as well! John continues to wear a million hats and is constantly expanding his areas of interest and business. I seriously never cease to be amazed at how talented and skilled he is at SO many different things. He does so well at balancing family life and work and taking time for the babies and me. 

Axton and Elliot adore Madeline and they are so sweet with her. They are both super excited about the warmer weather we've been having lately as the backyard is their favorite play spot! Axton is growing up so fast and is becoming such a little man with a very extensive vocabulary! Elliot loves hanging out with him and being his little sidekick but when I watch him drink his bottle in the morning or see him laying on the floor cooing to Maddy, I am reminded that Elliot truly is still a baby himself. Ah, what fun they are. I ADORE being their mama!

Here are a few favorite pictures of recently, because I know everyone is wanting to see Madeline, and also because what is a blog post without pictures?! =) And then keep scrolling to the end to read the main reason for this post. 

(Yes, I marked out some text on John's shirt. We are are involved in a lot of things that we don't publicize so hence a few things need edits now and then. =))
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And finally, a little update on me. This portion is going to take up the better part of this post, and it is a little strange for me to write, because I've come to realize that I don't really love to write about my struggles and there are definitely a lot of OTHER things I'd rather share than what I am about to write. However, I do not take for granted the friends, family, and online community that cares about us and has prayed and supported in so many ways during our very traumatic past summer of Madeline's birth and NICU stay. So with that in mind, I want to share these things with you so that you will maybe join with us in our current prayer needs, yet again.

As you all know, Madeline was born ten weeks early, totally unexpectedly, following a very scary illness for me. Through her birth and subsequent complications, we discovered that I had (and apparently have had for years, without knowing it) mitral valve stenosis. I almost died when she was born, and had to be on oxygen for 12 hours afterwards, which resulted in extensive testing for what was going on. We asked one of our doctors there at the hospital what cardiologist he would recommend, and we got an appointment set for September. Over the rest of the summer we focused on our little family and getting Madeline healthy and home, and only told a few people about appointment that was looming in the future. We knew it was serious but we just needed to wait to cross that bridge until we had the time, energy, and strength for it. In September we met with the cardiologist and were told, among other things, that my condition was the worst he had ever seen in someone my age. When we left his office, we were prepared and expecting that open heart surgery was a very real and probable possibility. I'm not going to lie, we got to the car and both sat there and cried. It all felt so overwhelming and extremely serious and just SO HARD. Over the course of the fall/winter I had to have another more in depth echocardiogram and several visits with other cardiologists. Appointments, tests, waiting, opinions....I had never been admitted to a hospital prior to Axton and then Madeline's births, so you can imagine that this has all been a brand new roller coaster experience, and not in a good way. Finally it was determined that since my heart valve hadn't calcified, open heart surgery could be put off for a number of years, and a much less invasive surgery could solve the problem for the time being.

Also over the course of the past year, I have had some of the craziest dental stuff going on. This may sound minor compared to heart problems (and it is!!) but balancing countless dental appointments and decisions, before and then in the middle of my pregnancy and then Madelines NICU stay and first few months home, hasn't been exactly easy. Keep in mind that I am the girl who didn't have a single cavity for years. My siblings and I brushed religiously and never got cavities. But apparently ten adult years of no dentist visits (out of convenience, because who wants to go to the dentist with healthy teeth) and three pregnancies can really work a negative number on ones teeth. (mamas, listen to me and go to the dentist! I so wish I could do that over!) I had two teeth that basically broke off/fell out last year. One resulted in an emergency root canal in the spring, and the other was literally too bad for a root canal, so I had to have it extracted and am in the middle of the process of getting an implant. Oh, throw a batch of cavities in there too for good measure. I've lost track of my number of visits to my dentist. There is a little silver lining on the cloud, and that is the fact that I found a dentist that I love and whom we will be using as our family dentist in the future. So if I have to be going so often, it is nice to have a place with which we are happy.

In November, when we were back in Iowa visiting my family, John and I were involved in a wreck which nearly totaled our truck. (if we had been in our car I wouldn't be here and alive to tell you about it) Again, long story...we were both completely fine physically, which was a miracle, but it was a scary wreck and was traumatic for me, especially afterwards. John spent most of Thanksgiving week lining up a place to do major repair to the truck, and shopping for a new car to get us home. I am so grateful that our kiddos weren't with us in the truck at the time of the wreck! 

Finally, the week before Christmas, I woke up one day with the weirdest twitching going on in my left cheek and eyebrow. I noticed it again later that morning when I was doing my makeup. By the afternoon we were in at our doctors office and I was diagnosed with Bells Palsy. If you don't know what it is (I didn't!) you can google it; just be prepared to be frightened. Some of the pictures you'll see are pretty scary, and a lot of the pictures I have on my phone of me from the last three months are pretty scary too. After everything else we'd gone through, the Bells Palsy honestly just felt the the cherry on top in the WORST way. I tried everything for it. Steroids, anti viral, creams, oils, meds, supplements, vitamins, acupuncture, massage, chiropractor...you name it, I tried it. Nothing seemed to help. Some people recover from it in a few weeks, and for others it takes months. There is no known cause, and no known cure. It would appear by now (three months in) that my case is one of the "takes months" cases. I am so thankful that we are slowly SLOWLY seeing improvement. Those who have seen me regularly from the beginning can see improvement too, and PTL I am able to talk normally now and don't have pain or tiredness, both of which were a problem at various points early on. All the pictures in this post are from this past month, so the ones of me don't look nearly as rough as it did in the beginning, but I still am a far cry from having a beautiful smile again and a lot of my face is still very affected.

Anyways! That feels like quite the dump of "stuff". And if I'm being open and honest here, I have to admit that the past eight months of all this have been unspeakably difficult. I'm not one to complain, and those who know me personally know that I am very upbeat and positive about life, even when it is hard. That is why I haven't preferred to talk about all this much. To me, there isn't much of a point to complain, and it is hard to be honest and say what all has happened, without it sounding like complaining, because it has been a lot of really hard circumstances. But there is a time to share, a time to ask for prayer, and this is one of those times! God is good. I can say that. I trust in Him. Has it been easy? No. But has He been MORE than merciful, and with us every step of the way? Yes absolutely. So much yes. 

In spite of a failing heart, a failing face, and a failing mouth, I am so lucky to still be feeling mostly great (as long as I don't exercise or birth a baby, haha!) and getting plenty of sleep. Getting enough sleep is something that we have prioritized ever since we got married. I genuinely don't know what it is like to not get plenty of rest, even as a young and very busy mama of three babies. Our kids are all amazing sleepers and love routine so we have settled into a new normal even with having three now. I am so so thankful to be going into this surgery feeling rested both physically and emotionally. 

My heart surgery is called valvuloplasty and it will be happening this Thursday morning, March 24th, @ 8am. I would greatly appreciate your prayers for safety and wisdom for the doctors! We are blessed with the most incredible network of extended family on both sides and our kiddos will be well cared for and loved while I am in the hospital and recovering afterwards.

Thankyou all so much for caring and following along with the bits I post here and there about our little family! As I said before, we don't take it for granted and we are thankful!

Lord willing, I'll pop on to say "it went well" as soon as I am "with it" enough to do so, following the surgery! 

Life is short and precious and blessed. If there is one thing I'm learning through this, it is to never take life and health for granted. Hug your people a little tighter and tell them you love them, and rejoice in the opportunities to do so!

Be Blessed! And happy Tuesday!

Chels

Madeline's Baby & Family Pictures

Back in September, my sis in love was so kind as to take these baby pictures for Madeline. Both of my boys had a professional newborn photoshoot, and I was sad that we didn't have that option with Madeline, as no photographers were allowed into the NICU during our time there, due to Covid restrictions.  

What I didn't take into consideration, however, was that she would look just like a newborn when she came home, even though she was over two months old at that time. 

These pictures were taken on her due date, after she had been home for two weeks, and I will always cherish them. We got some with the whole family as well and used those shots for our Christmas cards. 
Her gauze wrap was from my SIL's collection. Her headband is from this set and I use them all the time! I was given so many adorable headbands for her (literally dozens and dozens!) but being a preemie she has a very small head, so those gifted headbands are mostly waiting for her when she gets a little bigger! In the meantime, I ordered two sets of headbands for her that are smaller and fit/decorate her petite and bald little head. =)
I ADORE these little turban hats! I was given this mustard one she is wearing, so I don't have an exact link, but these are very similar. The yellow/sage floral blanket (Marshalls brand) on which she is laying, was a baby gift from a friend, and the light sage muslin wrap was from the afore mentioned photo prop set from my SIL.
A few matching ones with my girl. Featuring a very basic yellow Walmart tee for me. =)
Madeline was an absolutely angel for her photoshoot and slept through the entire thing!
This floral swaddle and headband set are from Jazmyn Nichole Boutique. (Madeline also has a matching hat) I heard about this small shop right around the time that Madeline was born, and I am in love with the products! I have several of their swaddles, hats, and hair bows for Madeline, and I've ordered more to keep on hand for gifts. The quality is top notch and I love that their swaddles are a little bigger than standard size swaddles. Emily, the mama who runs this shop, is a wife, mama, and homemaker, and I love the fact that when I order from her I get to support her small business AND get one-of-a-kind, reasonably priced, high quality products for my babies! Go check her out! 
How CUTE she is...
Speaking of cute...here's another cutie who calls me mama. =)
I wanted a "home session" type of feel for our family photos, and I also wanted something easy where we didn't have to go anywhere. So we moved the furniture into the dining room, put our living room rug up against the wall, opened all the windows for lots of natural light, and did all of these portraits in our living room! It was perfect.
Enjoy a few favs!
Our outfits were very much thrown together, with a little advice assistance from my Bontrager side sisters and sisters in law. I think everything coordinated very well and it just goes to show that it isn't always necessary to buy a whole new wardrobe just to get good pictures! Elliot's shirt was Walmart brand and had a stain but I made sure it didn't show. =) Axton's was a thrifted Gap brand tee and it was too big for him but again, it was just pictures and so it isn't obvious that it is too large. John's navy tee was Eddie Bauer brand. My top is this one, I've had it for years and posted about the same one in a different color, in a different post, a few years back. I've had three of them now (one in white, one in black, and then this one in the "rose red" color) and they are hands down the most comfortable and flattering nursing-friendly top I've found. The zipper adds interest but is very secure so it doesn't slide at all except for when I need to adjust it for nursing or taking the top on/off. If you are a nursing mama I HIGHLY recommend this shirt and if you are just a gal who loves a pretty and comfortable top then I also highly recommend this shirt! =)It is a little longer than a typical tee shirt length, and the dolman style sleeves make it very easy to size up or down! It also hangs very well and is lose around the middle which is lifesaver for anyone looking to get a slimming look. If you are a postpartum mama this shirt will be your best friend. 
My jeans were thrifted and my bracelet is this one. (it is currently out of stock but there are similar ones listed)
his little eyelashes kinda kill me. too sweet.
Yes, they are mine, so I'm biased...but seriously are they not just the cutest lil set of babies that you ever did see?! 
So thankful for this guy. I can't imagine walking through our journey without him!
All my favorite people in the world, right here. I love them more than words can say!
So thankful for these precious memories and photos! They will forever be favorites.
-Chels

Note: all of the items linked in this post are items that I own and love! The Amazon links are affiliate links. Please read my affiliate disclosure here.