Yikes! Over a full year since I have posted on here. I have started this post so many times, Jan 10th to be exact and even since then things have changed drastically.
For those of you that follow us on Instagram, then you know we have had quite the eventful year plus. This place was where we kept all our loved ones updated on Noah's heart, and to be honest, every time I come back here to post it's a wave of many emotions that I have tried to avoid. And honestly we have just been enjoying NORMAL life at home with our boy.
So I'll try to really briefly catch everyone up!
Since I last posted- we had our sweet baby girl, Elodie Clare Marek, in the afternoon on February 5th 2021. I will share her birth story in a separate post but it was a beautiful and easy delivery and she has been a joy.
We brought her home the next day and a few days later the Texas Winter Storm hit where we lost power, water, heat... everything! It was a challenge with Noah's needs to stay home so we ended up packing the car and heading to a nearby hotel that had power. Later that night the hotel also lost power, there was no food, no water...and everything near was closed due to the road conditions. It was definitely a very interesting situation that I don't think Texas has ever seen!
We packed up and headed to my sisters who (normally) only lives 45 minutes away but
it took us over 3 hours to get to her house with the roads closed and the snow/ice! A couple days passed and our neighbors went by the house to check on it and it was
flooded. Thankfully our neighbors rallied together and went over with shot vacs, fans and muscles and had gotten as much water out as they could while Brandon made his way back to the house.... have I ever mentioned that we live in the BEST neighborhood?? I know I mention it so much but goodness, God has put us in a neighborhood of just a really genuine loving community, that have now become like family!
Although they were able to clean it up quickly, the walls soaked up a lot of the water and mold accumulated quickly. Restoration came in and had to put flood cuts in nearly half the house, gutted the kitchen completely and the master bathroom, it was a mess. And I
was an emotional mess. Our dear friends Kate and Kit allowed us to stay in their guest house until we found a long term rental. Eventually we found an apartment in Georgetown and we were there for about 8 months until our house finished renovations and we finally moved back home (without appliances) the end of October. Although highly annoying not to be home for that long with all of our stuff, we were always reminding ourselves that its just STUFF and the most important thing was that we were all together and Noah has been able to be home with us.
During all of this chaos, Noah has had regular cardiology visits every 3 months. In April
he had a procedure done that required us to have a short stay in the hospital and provided us more data on his heart. Although physically he has remained pretty stable, his echos as of recently have shown a decrease in his already moderately depressed heart function and an increase in his moderate tricuspid valve regurgitation, both not at all what we want and make his candidacy for the upcoming heart surgery (The Fontan) that he needs an uncertainty.
He turned TWO in July. What an amazing milestone and he is truly beating the odds! We
had a lovely little birthday party for him. He got a kick out of everyone singing HBD to him.
He started attending a church program/school once to twice a week and he absolutely loved it. He is still fully tube fed, and we are continuing to be consistent with feeding therapies but ultimately we had to go back to feeding him 100 percent via tube as his weight gain plateaued. Physically he has made so much progress. He is such an independent little boy and loves helping with chores around the house and loves riding his bike. He is still adapting that he has to share his toys with his sister... but we are working on it. haha!
He has started talking so much, counts to 10, constantly is bossing E around, and knows his colors. He calls me "Money" and we have totally went with it because... it's just too darn cute!
Elodie has grown so quickly- she loves to eat and get in to everything. She has a scream that will make your ears hurt, when she wants something she will let you know!
She has gotten such a personality and overall a very very good baby! She has had to learn to stand her ground otherwise her brother will walk right over her. She will definitely to be a tough cookie. She started walking a couple weeks ago and we have our hands full for sure.
I started work full time, which has had its challenges but overall been really great.
We traveled to Florida multiple times within the year to get out of the apartment and to see my parents and have an extra hand with the kiddos. It has been so nice to have some normalcy and enjoy this "honeymoon stage" with the kids. We are constantly being reminded that these days are temporary and it's a hard thing to face. Constantly waiting for the shoe to drop.
Unfortunately during a recent cardio visit, we learned that Noah will likely not be a good candidate for the Fontan and the team believes the only option for him is a full cardiac transplant. We have consulted with multiple other, top cardiac centers around the country and top cardiac surgeons, and they all agree... so next up.. getting our boy a heart.
Although it sounds like a FIX, it is a whole new diagnosis. It is a complete and it is not a fix at all. It comes with a list of risks, rejection, coronary artery disease, and the average length of a transplant is 2-9 years. It also is a really difficult position to be in waiting for another baby to pass to give our boy a longer, better quality of life.
We can see that Noah is struggling and its been difficult to watch the progression and all the pain that our sweet boy has to go through.
We are currently battling with insurance which is holding us back from immediately getting Noah listed as a 1b (where we can wait at HOME)... but Thursday he will go in for a heart cath and to address some collaterals, and possible address the damus. We will keep everyone updated on Thursday. If you are not following @laughingafterlemons on instagram, please do! will try to be better at posting here but you wont miss beat if you want instant updates.
We love our tribe and we thank y'all for sticking with us through the ups, downs and the long silence on here.
