Update On Hailey's Heart: Could This Be Our Miracle?

Dear Hailey, 

You and I went to your 6 month heart check up today and you did so well! We had 2 sets of stickers stuck on: one to listen to your heart and the other to take a look at your heart. 

You melted the nurses' hearts when you would show them Mermie and would flex your muscles when they asked to see them before taking your blood pressure. 

When the nurses measured how tall and heavy you were, you also felt that they needed to know that you are 3 years old. You were not shy at all today! 

Afterwards, the Dr. came in to talk to us. She asked about how you were doing generally and then suggested that we double your meds so that you are getting the amount of medicine that you should be receiving. And then she shared some potentially good news. 

She told me that she was going to present your case in front of other cardiologists because she's discovered this membrane in one of the images that may be cinching your heart, causing it to be restricted. Don't ask me to name the membrane or where it is specifically, because when I heard this news, I was instantly filled with hope and my thoughts started to go in 1,000 directions. I did end up asking her that if this was the case, and the membrane was removed, your heart would function as normal? She nodded and then added that even if they opened the heart and found that the membrane is not causing the problem, they would most likely remove some of the thickened heart tissue anyway, so the surgery would not be done in vain. 

So ya'll, Hailey might not have HCM afterall!  I want to thank all of our friends and family who have been praying for you because this is looking like a miracle to me. (Keep the prayers coming because this is just still a haunch) Heart surgery sounds scary, but I have faith that it will all be ok, plus heart surgery is w-a-a-ay less scarier than heart transplant. 

Hannah, I think I need to talk to you a bit more about Hailey's condition. You shared about Hailey's condition today in martial arts class and you seemed very nervous about Hailey getting COVID. When I updated you on her condition, you looked a bit relieved, but seemed very sad about the possibility of Hailey having to get heart surgery. After a brief cry, you thought about it, looked up at me and said, "Well, we better make sure we get the best doctor to operate on her!" 

And another story I'd like to share has nothing to do with Hailey's heart, but has to do with Hannah's care for plants. This past weekend, we went in with our neighbor and hired a company to replace our side fence, the fence that makes up the walls of the "nature club." This is a place where you guys will spend hours, pulling up weeds and making random things with them. We had picked out a few ferns and African violets to spruce up the space and they happen to be near the fence line. As the workers pulled out various tools to complete the job, you guys would continue to go back and watch them every time you heard a new sound. Then, Hannah, you came and told me that one of the workers was standing on our new plants. I jokingly told you that if it bothered you, you could politely ask the workers to watch out for the plants. You asked me to go with you. I chickened out and said that it didn't bother me too much, so if it bothers you, you can go. I didn't think you would do it, but you slipped on your shoes and went outside. 

"Excuse me, Hi, when you guys are working, can you please watch out for our plants? " 

"Oh, ok, no problem." 

"Thanks." 

And then I heard the front door slam shut quietly. You came in, beaming and I was beaming also so hard on the inside. I've always been one to stay quiet and not stir trouble, but recently I've found my voice and considering how you have a lot of my genes, I've been encouraging you to do so too, so this was a proud parenting moment. 

Well, That's all I'm going to post for now. This is good enough news for a single post! 

Praying that a pesky membrane is the culprit to all of this. 

Love,

Mommy 
 

Oak Oak Go Away! 13 Months of Pandemic Survival

Dear Kiddos, 

There is light at the end of the tunnel. Finally the end of oak pollen season is in sight and tonight's rain will probably help wash away a lot of what's left over on the trees. Because pollen has been pretty crazy, we've been staying indoors a lot. 

Although the one time we did go out for a bike ride, when anyone would wave to you Hailey,  you would look away and say, "I don't like you!" Now, not only does this mortify me, it's very different from your general friendly disposition. Hopefully this was just a phase and you were mimicking something that you saw on TV. 

Hailey, its sometimes funny to see what you will end up getting into when you are left to your own devices. Most of the time, you require someone to be playing with you, but sometimes you will be sparked with inspiration and you'll just go off into a corner, gather supplies and play by yourself for awhile. Sometimes you will dress up, sometimes you will grab a pair of scissor and cut up a bag into a dress, sometimes you will draw and paint to your heart's content, and sometimes, you will just grab a book and sit down to read on your own. 

 

Hannah learned about initials this week and when I asked you what your middle name was, you kind of gave me a blank stare. Then I asked you to tell me what your name was and asked you to fill in the blank. "Hailey ____ Havlir" You thought about it and replied, "Hailey Princess Go-Go Havlir" After I told you your real middle name, you again paused and exclaimed, "No! my name is Hailey Princess Havlir!" 

Nathan, you have been turning to books whenever you are bored. I love this! You are currently super into the Percy Jackson series and have read all the books multiple times. You have found an interesting reading spot upstairs right by the window, tucked between the curtains and the window. Sometimes when it is too bright, you will come downstairs and read. One day when Hailey saw that you were reading by the window, she came to me, really concerned and told me that she didn't want you to fall out of the window. I was puzzled at first, but then remembered one of the lessons that she learned from her Qiaohu subscription program was to not play near open windows. After I explained how being by a closed window is safe and ok, she nodded and looked more relieved. See, your sister loves you very much. 

This week has also been a week filled with Perler beads. You each have a long Perler bead sword, several small princesses and a good stock of ninja stars. I love them, because they keep you occupied for lengths of time and you guys are being creative. 

  

Nathan, you wanted to make Chinese dessert bread one day, and since we had all the ingredients, I let you guys take over and make everything from start to finish. I helped put stuff in the oven, but for the most part, you both measured and shaped the bread. 

After you guys finished, I made a dairy free version for Hailey, and made a oat and soy milk based custard and you loved the custard...bread, not so much, but even I was impressed by the custard. 

Last weekend, we decided to get together with one of the families in our neighborhood for a crawfish boil. Hannah, you were the only kid brave enough or interested to go and play with the crawfish. You came with me to go buy the crawfish and in the car you asked me to turn up the music to something peppy and dancy so that the crawfish can spend the last hours of their lives listening to fun music. You then spent a lot of time outside with them and when it was time to cook them, you started to cry a little. You ended up not eating much crawfish (even though you used to be able to eat your weight in them) so I guess that's another reason why we shouldn't play with our food and get attached to them. 

One evening after dinner, Nathan, you came up to me and asked if we could play the blanket game. I was completely clueless to what you meant and you started to explain how we used to wrap you up in a blanket and you had to escape. Wow, flash back to 5 years ago when Hannah was still being swaddled as a baby. I remember us also wrapping you in a blanket and you ended up trying to escape. Perhaps we did this when Hailey was a baby, but I'm pretty sure it was when Hannah was a baby. So, we wrapped each of you in a blanket and it was hilarious just watching you guys wriggle around trying to escape. Pretty soon you all were fighting for turns to be the caterpillar. I haven't laughed so hard in a long time. 

And then you guys wrapped me up. 

One evening, Hannah, you come over to me to ask me how boomerangs worked. I had no idea, so like any modern mom, I looked it up on youtube. The next day you guys were going to have an outdoor playdate, so I thought it would be fun for you guys to all do an investigation to see what type of cardboard makes the best boomerangs. There were lots of fails, but that's ok. 

And before I sign off of this post, just wanted to announce exactly a week ago, Steve and I got our second vaccines. A burden has been lifted off our back, but we still have a small tiny load of a concern for Hailey. Even though the cardiologist told us 6 months ago that most heart patients recover just fine, I'm wondering if this is still the case. We have an appointment with her next week and I'm sure we will be able to get that question answered. 

                                                 

Until next week, 

Love, 
Mommy 

Easter Fun

Dear Kiddos, 

There has been a lot of anticipation leading up to Easter. It seemed to come quickly this year, (maybe it's because it was earlier...) 

I wasn't going to mention anything, but one day Hannah, you asked if we could dye eggs for Easter and I just couldn't destroy that little sparkle of hope that twinkled in your eye and we made some dye with food coloring and vinegar. Now I don't even know why people buy special egg dye when food coloring works perfectly well. 

Oak pollen levels have been creeping upward, so you guys spend a lot of time playing out in the "nature club" with the next door neighbors. I'm not quite sure what you all exactly do, but you all happily play outside for hours at a time, which is fine by me. 

For Easter, we got together with another family who has children that closely mirror your ages. You guys had a blast playing together and us adults enjoyed a long stretch of mostly uninterrupted conversation time. 1 hour quickly turned into 4 hours and eventually they had to go home for dinner. It was a good reminder of what normal life was.  It was also nice to "check in" to make sure all these weird things that you guys are doing are typical. 

Photo credit for previous 3 pictures: M. Danner

Hailey, I'm glad we have a follow up appointment for you next week. It seems like you are getting a bit more grumpy (especially in the afternoons) and you are constantly telling us that you are hungry. But then when we give you real food, you exclaim, "I want snacks! I don't want [insert meal]" Maybe it's a mental leap, maybe your medication needs to be recalibrated, but I hope we can get it figured out soon. 

Today, Hannah, you came over to me and sheepishly asked if you would be allowed to create a recipe with whatever you want. I think I surprised you when I said "sure" because you got super excited and started to grab all of the ingredients. 

After you cleaned up a spill of about a cup of sugar and a cup of salt (not exaggerating) you got on a roll. This batter ended up having oatmeal, eggs, soy milk, cacao powder, vanilla, mint leaves, flour, sugar and salt. You decided to make crepes with the batter and they turned out pretty good. 

Well, that's about it for now. Until next week, 

Love, 

Mommy