Tuesday, April 26, 2016

Matters of Abby's Heart


The Friday before we left for NYC we had Abby's 2 year cardiologist appointment. We were a bit anxious going into it knowing that if Abby got as upset as last time during her echo that they were going to have to sedate her so they could get an accurate reading. Luckily she did get! We gave her a sucker and turned on Daniel Tiger and she did awesome! The tech said she got a great reading! Abby even let us put her in a few different positions just to be sure Dr B could see her heart from all angles. We were so relieved! Then we waited for Dr. B to read the echo and come in to give us the results.
Dr. B came in and listened to her and asked a few of the usual questions. Then he said based off the echo results today he wanted to present her case to the board (the board consists of the top cardio doctors & surgeons at Childrens Mercy) and then get her on the schedule for surgery if the board agreed with him. Dr B said that right now the ASD (hole in her heart) is more of an issue than the PVS (valve issue). So the hole needs to be fixed first. Then came the discussion of which type of surgery she would be having. We were always hopeful that we could wait until she was at least 5 before doing her surgery and then our chances of doing a catheter procedure were far better. But because she is only newly 2 and hovers around the 5th percentile on the growth chart open heart surgery would be her only option. Our hearts dropped for the second time in less than 3 minutes. And then I asked Dr B a question that I already knew the answer to but I needed to hear the answer out loud...Will they stop her heart? And again I knew the answer was yes but when he actually said "yes they will have to stop her heart" I almost threw up (and if you know me at all you know how I feel about throwing up). He went on to just give us a quick run through of the surgery including the recovery time. We were both shocked to learn she will only spend a day or 2 in ICU and then a few days on the cardio floor before getting released. The first 2 weeks will be the roughest on her but by 6 weeks post op she will (fingers crossed) be cleared for all activities. During her surgery they will see how the valve reacts. His hope is that it will greatly improve and nothing will need to be done. If that is not the case the surgeons will decide if they need to repair the valve right then or wait a little bit and do a catheter procedure down the road.

Dr B said he would present her case on Tuesday but warned us that if they had more serious cases like those patients actually in the hospital she might get bumped so to expect a call from him in a week or two. And then we were on our way home to wait. I won't lie-I was a mess on and off for good few days. Its not like we didn't expect this day to come but we just didn't expect it to come this soon. It's a lot to process. It's a lot to explain to our family. It's a lot to explain to Ben. It's just a lot all around.

Tuesday rolled around and I was trying not to get my hopes up that we would get a call that day or that week but my phone rang and it was Children's Mercy. Dr B said the board agreed with him and that they wanted to get her on the surgery schedule. He said we just need to get it done in the next few months and to look over all calendar so when the scheduler calls we had an idea about when would be good for us. He also mentioned that because she is so small the board wanted us to be aware that she will more than likely need a blood transfusion. We are hoping we can be a direct donor to her and will find out more later on that matter. The scheduler called a few days later. She asked when we preferred to have Abby's surgery and we said July. After going over the family calendar as well as Vince's work schedule mid-July was going to be the best time for us. We have 3 family trips planned for June, the kids summer school camps have already been scheduled & paid for and Vince tends to schedule 4-6 weeks in advance for work trips. The scheduler said she was only scheduling for May & June but July's schedule would be out next month. She said July shouldn't be a problem and she'd call us in a few weeks. So now we play the waiting game again. I think I will feel a bit better once we have a date set or at least I'm hoping.

In closing, I want to say just how thankful we are for every ones thoughts and prayers for Abby's heart over the past 2 years and hope you can spare some extra prayers for her now. I will update as soon as I have a date or if anything changes.


Long Weekend in NYC

Vince and I took off to NYC for Brian & Aries' wedding on the 16th! We landed late afternoon on Thursday and checked into our hotel quickly and headed to Lavo NYC for dinner. It was a great dinner but the restaurant was sooo loud! After dinner we went and had a few glasses of wine before calling it a night. Friday we woke up and grabbed a quick breakfast and then went and hung out in Central Park. I love walking around and people watching! Then we did a bit shopping and grabbed a tasty lunch. Friday night we headed to The Comedy Cellar-one of Vince's favorite places to go! It was so much fun! We saw 5 acts and I loved all but 1 of them! After that we grabbed a quick slice of pizza and found a fun bar to have a few drinks at. Saturday was wedding day! We slept in and grabbed brunch at Sarabeth's and spent the rest of the morning back in the park. We did a little more shopping after that. And then Vince went for a run and I thought a glass of champagne & my book sounded like more fun! Then it was time to head to the wedding. The wedding was beautiful! One of their friends officiated the ceremony and made it so wonderfully special for them! Brain & Aries are the perfect match! They compliment each other in every way! I am so excited for their future! After the ceremony we ate great food, drank good wine and danced our socks off! Then we headed to an Irish bar after to continue on the celebration! We stayed out way too late and our 9am flight came way too early but it was all worth it! A big thank you to my parents & Maria for watching the kids! I think they were more sad to see Maria go than for us to be back! Thank you Brian & Aries for letting us help celebrate your beautiful wedding! We can't wait for your visit in KC this summer!

Handholding

I glanced over during lunch one day and noticed this....
And this handholding went on for most of lunch. They seriously test me daily in so many ways but they also melt my heart daily. 

Spring Soccer

Spring soccer started a few weeks back. Ben is on his same team as the past few years...The Rockets! They are undefeated again this year! Ben hasn't scored a goal yet this season but has had a few assists! The boys all have so much fun together! So sad to think this will probably be the last season all these boys will be playing together as the Rockets as they all are off to Kindergarten in the fall.

All about Daddy



Easter

The day after Abby & Will's birthday party it was Easter. Easter snuck up on me fast! We "tried" to color eggs a few days before but none of them were really into it and they all bailed on me after about 5 minutes.  Oh well there's always next year! Easter morning we woke up to snow! Giant huge snowflakes! I really think they were the biggest snowflakes I've ever seen! And just like the day before the skies cleared early afternoon and then the sun shined the rest of the day! The kids woke up and were so excited to see their baskets and hunt for eggs! Vince made the kids bunny pancakes which they loved! We went to Vince's mom for a yummy brunch and then came home for nap before we went to my parents for dinner. I tried to get a picture of the 3 of them but they were so not in the mood. But such is the story of our life with 3 kids 5 and under!

Abby & Will Are Turning 2 At The Zoo!


A few weeks back we had Abby & Will's 2nd Birthday Party at the zoo! We woke up to a rainy Saturday morning which isn't great you you have a birthday party planed at the zoo. Luckily the actual party was inside but we had planned on having a fun afternoon in the zoo with our our guests. But we weren't going to let a soggy Saturday rain on our party! The party was a hit! It was the easiest party I've ever thrown-the zoo took care of everything! The had cupcakes, Waldo Pizza, popcorn and lemonade all ready for us when we walked in! The kids loved the giant wall aquarium in our party room! They got to make hats and had a fun story read to them! As luck would have it when the party was over the rain stopped and the sun even peeked though the clouds! We had a great afternoon in the zoo with our friends! Will had a blast jumping in the puddles & watching the penguins! Abby loved the orangutans! And Ben got splashed by a sea lion and was so excited he couldn't stop laughing! A BIG thank you to everyone who came out to help Abby & Will celebrate their 2nd birthday!