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
