A blog about my daughter Addy who was born with a heart defect called Tetralogy of Fallot

Addy’s 2 Year Heart Check-Up

I decided to write a blog post for Addy’s 2 year heart check-up because unlike the original plan I had in my mind of writing a quick, “Addy’s heart check-up went perfectly and we won’t be back for another year!” on Facebook it wasn’t quite that simple

. First I’ll keep you out of suspense and tell you we still don’t have to go back for a year and all things considered her heart is doing really well! But there were some changes.

We took her to the pool this morning to wear her out so she would take an early nap since her appointment was right during her nap time. She loved it!

We took her to the pool this morning to wear her out so she would take an early nap since her appointment was right during her nap time. She loved it!

When the appointment was schedule it was based off her check-up a year ago and at the time they felt that she was doing so well she could just come in for her check-up with Dr. Armsby (cardiologist) and she would be able to just listen to her heart and check on her growth to determine how she was doing and if she needed an Echo-cardiogram they would order that to be done after the appointment. We had anticipated that she wouldn’t need the Echo, they try and only do them if absolutely needed at age 2 because they are so squirmy at that age that they have to be sedated and the doctors prefer not to sedate them. So she got her height and weight checked. Fully clothed she is 22 lbs and height is 2 feet 8 inches. So she’s perfectly proportioned but petite which is to be expected of kiddos with repaired Tetralogy of Fallot. They took her pulse and her blood pressure which again, were great. Plus she did excellent!

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Having her blood pressure checked.

Dr. Armsby came in after they did the vitals check and talked to us to see if we had any concerns. I brought up one concern about stamina. Not lately but last Fall she went through a short period where she would play hard and then just sit down, almost as if she was tired. Dr. Armsby said that’s not uncommon but something to keep an eye on. So we have to learn how to check her heart rhythm and make sure she her heart isn’t racing. When a child has open heart surgery the scar tissue that develops from the sternum being opened and also the incision can cause the heart to race sometimes and they just like parents to keep an eye on that. Once she gets older she should be able to tell us if it’s happening but for now we just give her a close hug, chest to chest and try and feel her heart rhythm. I will have no issues with the extra snuggles!🙂

She then listened to her heart and this is about when Nate and my own hearts dropped. She said on top of her already existent murmur she could hear a rumbling that made her want to go ahead and do the Echo-cardiogram. The good news was that we had been prepping Addy for this appointment and she did so well just having her heart listened to that Dr. Armsby wanted to go ahead and try having the Echo done without sedation. They kind of rushed us into having the Echo done as well so it made us a little nervous that they wanted things to be done so quickly but I think it was more for just consideration and not making us wait around.

Addy did amazing during her Echo-cardiogram! AMAZING! She didn’t move an inch for the whole half hour it took and let the tech position exactly how she wanted each time. Nate laid with her and she picked out a show to watch (Dora the Explorer) and she was happy as can be. We were so proud of her! Then afterwards we went back downstairs and while they read the Echo-cardiogram results Addy got to play and color at one of the tables they had set-up. It all went surprisingly quickly considering in the past we’ve always had to wait around quite a bit.

They called us back and Dr. Armsby eased our worry by right away saying that she’s doing really well and there’s no cause for any concern. It’s amazing how each appointment we learn something new though! So first she said that the repair work is holding up perfectly and looks excellent. We learned however that she didn’t have one hole but two that were repaired. They focused so much attention on the one hole they repaired with the bovine patch that they never mentioned another smaller hole that was stitched closed. The part of her heart Nate and I have been holding our breath over was her Pulmonary Valve that has slight Pulmonary Stenosis (narrowed valve). They are monitoring it to make sure it continues to grow as she grows and doesn’t get more narrow. Great news! It is growing with her so far and hasn’t narrowed anymore. Now for the “bad news”, when Dr. Langley (surgeon) did the repair on her Pulmonary Valve she only had two leaflets (flaps that open and close the valve) where the standard is three leaflets. So he cut the leaflets to create three of them. The leaflets have weakened a little and don’t hold as tight of a closure and now she has what is considered a mild leaky valve. It’s a 50/50 scenario of how the valve progresses. She could for the rest of her life just have a mild leaky valve or it could get worse. If it stays the same, then great, it won’t affect her life negatively at all! If it gets worse it would actually have to progress from mild to mild/moderate to moderate to moderate/severe before they even discuss repair. If she does get to the point of a moderate/severe or a severe leaky valve she would need a valve replacement. The relief to this is it can be done by catheter through a small incision in her groin and it’s only an overnight stay in the hospital.

So that’s where we are at right now. We go back in a year for another check-up and she will have an Echo-cardiogram before we see Dr. Armsby and we just continue to keep an eye on the valve.  Of course since she was such a good little girl during her check-up and Echo she got a very special treat. Plus we are in the middle of potty training and she used the big girl potty at the hospital twice and no accidents! She got a Mini Strawberries and Creme Starbucks Frappuccino! She was a happy girl!

Her very first Starbucks!

Her very first Starbucks!

A busy spring!

This is a long overdue update! Our spring has been so busy that it’s hard to find a moment to update.

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Someone who has been especially busy is Addy. Little Miss has gone through some big developmental changes, especially last week! She started walking, waving, covers her ears (?) for peek-a-boo and she says Hi and Uh oh! In other words she is so much fun right now! The last time we went to the doctor was over a month ago when she had her last Synagis vaccine. At that appointment she weighed 14 lbs. 6 ounces! Officially doubling her birth weight. Yay! In the last couple weeks we weaned her off her very last medication, Prilosec. She still needs a thickener for her milk but she is also eating more solids and doesn’t take a bottle as often. Miss Independent prefers to feed herself and isn’t so much a fan of vegetables. But we try and find ways to trick her into eating them. Like I said, she is so much fun right now! She has quite a personality!

 

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Nate has been super busy with work and some exciting developments taking place with StrapGraphics. The only bummer news with him is that he is having knee surgery next week. He has had two surgeries in the past, about 10 years ago, on this same knee. He didn’t do anything in particular just turned just right and tweaked it. After finally getting into a doctor it appears he has a torn meniscus and the doctor just needs to go in and snip off the little torn flap. The good news is that it is supposed to be a very quick recovery and not terribly invasive surgery. So he should be feeling okay for our trip to Maui next month. Fingers crossed!

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My health has been on the up. I was diagnosed with Hashimoto’s Disease but the doctor thinks I might be able to eventually come off the medication. So far they’ve already been able to decrease my dosage so that’s a great sign. I’m really hoping that I can be off it soon! I’ve been training for the Portland Rock n’ Roll Half Marathon and the training has been going really good. I’ve been getting up early with my friend/running partner for our runs just like we used to in the past and during our pregnancies and it’s been really nice getting our runs in and done before we start our day.

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I’ve started the planning Addy’s first birthday party as well. I can’t believe she will be one next month! I get a little emotional thinking about it sometimes because it’s kind of crazy to think of what a year we’ve had! It went so fast! Now let’s just pray it doesn’t rain for her party.

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San Diego Trip-Day 1

As I mentioned in the last post our family was needing a little getaway and some sunshine so we went to San Diego for a couple of days and visited a couple friends. Addy did great on the plane considering lack of a decent nap. As long as the passengers were socializing with her she was happy as a clam. We had a layover in Santa Rosa and so I walked her down the aisle to stretch her legs and needless to say she gathered quite a few fans along the way.

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We couldn’t have chosen a better weekend to go! We woke up to the feel of summer, put on shorts, short-sleeves and sunscreen and headed out. It ended up being 84 degrees and BEAUTIFUL!

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Chase took us to Mission Beach and we walked the full length of the boardwalk, ate lunch, had iced coffees, looked in a couple shops and just soaked up the warmth and sunshine.

photo 2 (16)Addy loved it! She fought taking a nap but finally caved when she was hanging out in the Ergo.

photo 5 (11)Our friend Chase was generous enough to serve as our host, chauffeur and tour guide for our little trip.

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photo 3 (15)It was such a perfect day!

And when Addy woke up we took her out on the beach and let her walk around which she loved.

I’ll post Day 2 tomorrow, the San Diego Zoo!

Needing some sunshine

It’s been awhile so time for an update! Addy is awesome! She’s seriously so much fun! She had her 9 month check-up a little early (1 week before officially 9 months) but her stats were good. I asked if they could double up on appointments, the Synagis vaccine and her 9 month well-child check so that we didn’t have to do two week trips in a row. She’s dropped into the 1% for weight but she’s also very mobile now and so burning the extra calories. It hard to not worry about her weight and size when for the first 5 months of her life we were told that she just needed to grow and get bigger. Now that her heart is essentially repaired it’s no longer burning the extra calories and so the every day foods without supplementation should be sufficient. She is just petite. The other day my Mom had Nate pull my baby book down from the attic so we could look to see what I was at 9 months. I was 15 lbs. 10 ounces and 26 1/2 inches long. At Addy’s 9 month check-up she was 13 lbs. 14.5 ounces and 25 1/2 inches long. So really not a huge difference. And in each check-up my Mom had written that the pediatrician said I was small but doing well. So she’s just like her Momma!

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She’s finishing up on her last week of this round of swim lessons. It’s been a lot of fun! She is going to be doing another month of Water Awareness and if halfway through they think she’s ready for Water Survival then she will switch to that. All the kids in her class are going into another month of Water Awareness together so it’s kind of fun for both the parents and kids to see the familiar faces. She can swim under water for 3 counts unassisted to me now. Which actually isn’t the impressive part for young babies. Most babies can learn this quickly, it’s the floating on their backs  without anyone supporting them that is challenging. So we are getting there, I only need to keep two fingers on one shoulder to keep her balanced for the most part. We practice at home in the tub as well as her twice a week lessons though and hopefully we will get there soon. It’s impressive to watch in the other classes the little babies just floating on their backs like it’s no big deal.

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Sleep was going really well, as soon as she started crawling the night terrors went away and she was doing fantastic for a couple weeks there. But now we are back to short naps or skipping a nap and then she has been waking up in the middle of the night crying. Coincidentally she has also taken to pulling up on all furniture and cruising around it and then she also tries to stand unassisted in her crib (when she should be sleeping). So I wouldn’t be surprised if we are coming up on another big developmental leap soon. Her vocabulary is also expanding. She still has Momma and Dada down but everything is “YEAH!” now. And of course she carries on very lively conversations with her stuffed kitty, lamb or book with baby talk.

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Eating hasn’t been going too great either. She doesn’t eat much of her bottle and has sort of been picking at all her foods except cheese lately. Nate and I had to stop saying cheese in front of her during meal times because that is all she wants. Girl loves her cheese!

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For me I’ve finally gotten somewhere in my hypothyroidism diagnosis. I went to my OB and discussed with her how I believe it’s very pregnancy related. She doubled my medication from 50mg to 100mg of Synthroid. 50mg wasn’t even having a noticeable effect on me. And then got me in to see a new Primary Care Physician and it just so happens to be Nate’s PCP. I did try to see him but at the time I was trying to find a PCP he wasn’t taking any new patients. But fortunately a direct referral from another doctor does the trick. He’s wonderful! He’s also a runner which instantly made me like him even more. I saw him today and he was very thorough and asked a lot of questions. He did blood work as well to see if it is being caused by an autoimmune disorder. If it is then he said he can know how to treat it, lifelong or if it’s not, when to start weaning me off the medication. I should get those results back in a couple of days. He also is seeing me back in 6 weeks to see how the 100mg is working and whether we need to adjust the medication dosage or not. I’m not feeling a whole lot better but I’ve only been on the increased dosage for a week and it takes several weeks to see the effects. But I am feeling a lot better about my care which is a tremendous relief in itself.

We booked ourselves a little vacation to San Diego in a week and a half  for a long weekend to visit Nate’s friend Chase. We were fortunate to have enough miles to cover our flights and then we will stay with Chase and he’s getting us into the San Diego Zoo for free. We can’t wait! It’ll be a fun little getaway and I really am hoping for some sunshine and warmth. It hasn’t been a terrible winter but there is just something about the California sunshine that brightens your mood.🙂

In other health news…

We actually haven’t been in for a specific weight check for quite a few weeks for Addy. She hasn’t been eating fabulous but also not bad so we are just giving her a chance to do her thing. She loves her solids and she’s started in on some thicker foods and eats bits of whatever I’m eating. Her favorites being salmon and avocado. Whatever mom has she is willing to try. She wouldn’t stop drinking water from my CamelBak water bottle so I got her her very own small one to which she has no interest in unless I drink from it. She also likes her cereal puffs. She has two cute little teeth now on the bottom, center that she loves to use to crunch on an apple or little cutie slice in those mesh feeders that keep them from choking. And since she has teeth now we’ve got the exciting task of adding brushing them to her bedtime routine. She isn’t a huge fan but she will get used to it.🙂

Heading out in the snow!

Heading out in the snow!

She also started crawling a couple weeks ago with a lot less vigor than we expected. She didn’t really care at first. She could crawl but only did occasionally. She’s been progressing ever since though and is now a little busy baby all over the room. The cats don’t stand a chance if they are on the floor, she goes right for them.

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On Monday she had her first swim lesson and loved it! Not that we are surprised, she pretty much approaches every new experience with a shriek and a smile. Swim lessons are going to be even more fun than we anticipated, I am so happy we enrolled her. SwimBabes puts together an amazing program that is so much more than swimming, they learn to help clean up, share, interact and how to react.

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Next week is her 4th Synagis vaccine and her 9 month well-child check. 9 months! I truly can’t believe how fast time has gone and how much has happened in 9 months! She did go through another bout of night terrors again for about two weeks. It was so sad! Apparently these can last until about 6 years of age, I really hope hers do not.

In other health news, yes, unfortunately there is health news that doesn’t involve Addy. Nate’s eye surgery he had in October was unsuccessful and on Tuesday he had to have surgery again to reverse it. He has an eye disease called Keratoconus in which the cornea is warped causing him to have a severe astigmatism. So in October he had surgery in one of his eyes, the worst one, to have Intacs implanted. The Intacs were two plastic lenses that reshape the cornea to not be warped. Initially he felt like they helped but then over time he started to see a halo around any lights he looks at and noticed fatigue in his eye. I personally started to notice the Intacs in his eye too when previously they were hardly visible. So Tuesday he had them removed and fortunately he said he feels a lot better already. The only other option now is a corneal transplant which at this time he is not interested in doing.

Recovering from surgery and looking like Robo-Pop.

Recovering from surgery and looking like Robo-Pop.

In the last month and a half I started to notice when I put moisturizer on my face and neck every morning and night that my thyroid felt a little more prominent. I decided maybe I’d better make an appointment and just make sure it was nothing. It wasn’t nothing. I had blood work on Thursday and found out Friday at 5pm (let it be said, emailing someone their lab results on a Friday at 5pm when you can’t talk to the doctor until Monday is cruel) that my thyroid levels were VERY low. After googling it all weekend (and then it being confirmed by the doctor on Tuesday) I learned that I have Hypothyroidism and pretty much every symptom listed with it. I just hadn’t realized the symptoms could all be related. For instance fatigue, who isn’t tired with an 8 month old? But now that I know it makes a lot more sense, apparently I shouldn’t be THIS tired. Once talking to the doctor on Tuesday she believes my case is quite advanced, she mentioned Grave’s Disease but I haven’t had a lot of confidence in this doctor and think that is incorrect, she wants me to see a specialist though so that should help get a correct diagnosis. Unfortunately endocrinologist aren’t easy to get an appointment with and I likely won’t be able to see anyone until April! Meanwhile, I had an ultrasound yesterday on my thyroid to make sure there isn’t anything alarming like cancer and they started me on a medication right away that is supposed to have me feeling better within a week and hopefully almost normal in 6 weeks. This all is contingent that the dosage of the medication is correct and the only way to find that out is to have blood work every 6 weeks to check my TSH levels. Now that I know about all this I’ve been super upset to say the least and impatient. I want the meds to start working NOW and I just want to feel better. It’s all very frustrating.

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Addy says “enough already!”

Luckily we are blessed with our Addy girl who is seriously one cool kid! She is so much fun to be around and thinks everything is worth laughing about which reminds me to do the same. One of my favorite things she does right now is before she is getting into something or does something she knows is naughty she will be completely silent and then you’ll hear a little giggle, or if you are looking at her she will look at you and smile and then continue forth. And when you tell her no and take it away or move her away she laughs mischievously. I know eventually this will be a challenge in the discipline department but right now it’s seriously cute!

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The Latest with the Peanut

Addy had her 3rd Synagis shot today. I gave her Tylenol 30 minutes beforehand to see if that would help her at all. They have told me the vaccine doesn’t have any side affects other than soreness at the injection site and that’s true as far as I can tell. But she still cries harder and doesn’t calm easy in comparison to the 4 vaccines she’s received at her well child checks. It seemed to help as far as I could tell, either that or she was a lot happier that her Daddy came along this time.🙂 They also checked her weight, the amount of Synagis administered all depends on how much she weighs. She was 13 lbs 3 ounces. So… She’s gained 3 ounces since her last weight check on Dec. 31st. Not great but we will take it.

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She’s not eating terrible. She usually eats somewhere between 3 to 4 1/2 ounces from the bottle and then she has rice cereal for “breakfast” and for dinner we introduce a new food about every 3 days. We eliminated her 2:30 am feeding a couple weeks ago. She wasn’t consistently waking up for it and so we decided it was time to let it go. She adjusted after two nights. She would wake up and when we didn’t come get her she fell right back to sleep. She has also outgrown us rocking her to sleep. So essentially she has sleep trained herself. Not complaining at all because I’m so glad we didn’t have to endure the “cry it out” method several of my friends have but I do miss rocking her to sleep. But it has been a time saver and it’s been wonderful for Nate and I to be getting a solid night of sleep.

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She got a dolly for Christmas from her Great Aunt Starla and she is so in love with her. Contrary to the way she is smashing her hand on her face in this picture.🙂

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Developmentally we’ve been told she’s ahead of the game cognitively. She observes and tests things everything and is extremely curious.  She catches onto things quickly. She’s been calling me Momma for about a month and a half and especially likes to call for me when she’s frustrated. She has started to call Nate Dada. And she gives big fat wet kisses. So that’s been exciting! The other day we caught her figuring out how when the little mirror on one of her toys caught the light it created a reflection on the wall and she spent a good 5 minutes making the reflection bounce all over the wall.
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Physical development she’s rolling and rotating all over the place. She working on some of the movements that would lead her into crawling but she’s pretty comfortable with rolling and rotating to get where she wants to go. She’s surprisingly fast too so we’ve went ahead and baby proofed some of the obvious things. I also felt the makings of a first tooth this morning! She hasn’t been fussy about it (so far) so I don’t know how long it’s been working it’s way in but it’s definitely there.

She loves her kitties. :)

She loves her kitties.🙂

We signed her up for swim lessons that start February 3rd. One of my best friend’s, Katie, is getting married in Maui (I know, another wedding in Maui, oh darn) the day before Addy’s 1st birthday (spoiled little girl gets to spend her First Birthday in Maui) so we want her to have some swim experience prior to that trip. So that should be fun! Other than that Nate is recovery from his busy season at work while I’m starting into my busy season at my job.

2013 was quite a year!

Today we had a post-surgery check-up and Addy had an Echocardiogram and saw Dr. Armsby. It went great! From a cardiology stand point her heart is functioning normal and just as it should be. She still has pulmonary stenosis and it has narrowed a teenie tiny bit since surgery. But so little it’s not anything to have any concern about. We just have to wait and see as she grows that her valve grows with her. From a growth and weight stand point she’s small. But she’s perfectly proportioned. Meaning she’s not long and super skinny she’s just short and appropriately weighted to her height. So all in all we can start 2014 knowing Addy is healthy and for that we can feel nothing but grateful! We won’t have another appointment with Dr. Armsby for another 6 months but will see Steve in a couple of weeks.

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The other night Addy was extra restless. From the moment I put her down for bed she tossed and turned and woke up crying and had to be rocked to sleep several times. One of those challenging nights where I knew we would likely be up several times that night. Yet one of the times I was rocking her she fell into a deep sleep, snuggled against me. And I sat there and rocked her for a little longer and thought back on everything we’d been through in this last year together.

It’s overwhelming to think about. Stuff that happened even before we met Addy face to face. Exciting things like buying our first home in January or really hard moments like losing my Grandma in March. Addy being born in May, but finding out about her heart. Whitney’s wedding in Maui and being able to go. Addy’s open heart surgery in October but her amazing recovery quickly followed. And then everything else that happened in between. A lot of it was so hard that I wasn’t sure we’d ever make it through the other side. But as I sat there and rocked her I realized we had. And each day is just getting better and better. God has been so good to us. We truly are blessed and He gave us an amazing support system. So thank you for your support and prayers. Thank you, thank you, thank you!

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Here’s hoping 2014 is just as memorable but with a little less heartache. Happy New Year family and friends!


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