Thank you all for praying for Lyla's cardiologist appointment on Thursday! She had the best appointment ever. They always start with blood pressure which she hates and then she is scared and crying the rest of the appointment. But on Thursday she did awesome with the blood pressure! She wasn't a fan of the pulse ox (basically a bandaid with a red light on her finger), but she quickly recovered and got through the EKG too!
So we started to give Lyla lunch and then we were called back for the dreaded echo... We popped in the movie Frozen and I fed Lyla the rest of her lunch (including cookies :-) during the beginning of the echo. The last part is always the hardest and also the most important because that's when they get pictures of her pulmonary branch. They have to prop her shoulders on a pillow with her head hanging back so they can use the probe under her chin. And this always occurs about 30 minutes after they've started the echo, so she's already reaching her limit of laying still anyway. But this time, we bribed her with cookies for afterward and the binky and she did awesome!!! They got all the pictures they needed!
We met Lyla's new doctor and really liked him. He is the cath Dr who has been following Lyla's case anyway, but it was nice to finally meet him in person. We got the good news that is seems like Lyla is growing into her arteries. Basically, the arteries were narrowed because of how small she and they were. But as she's growing, her arteries are growing as well, which in turn is alleviating some of the tension which was making them narrow. The Dr was really encouraged to see this on the echo and only needs to see us back in 6 months. He didn't have an explanation for our concern that she's been getting out of breath easily and tires quickly when playing and running around. For now, we'll keep an eye on it pending other tests if he still can't see a reason for these symptoms.
We are praising God for such great appointment and the good news we got as well! WE've been praying so hard since she was born that her arteries would grow and be less narrow, so we're thankful that we're beginning to see how God is answering that prayer. And a huge extra bonus...Lyla got to meet Elsa from Frozen on the way out of the hospital!! She was so excited and got her picture taken with her too:-) Again, thank you all for praying!! I hope you're encouraged as well as we see God answering our prayers. God is good friends ;-)
Saturday, July 19, 2014
Monday, June 30, 2014
live!
Mortality has been on my mind a lot recently. Perhaps because we just celebrated the 2 year anniversary of Lyla's surgery and reliving all those memories is a heavy thing. Maybe it's different reminders through other's stories of how quickly life can be taken away. Or finding out the little boy Lyla shared a pod with at CHOP lost his battle with CHD in October at 22 months old. All these things make me cherish every single moment I have with my kiddos. It's not easy, especially when they're both crying and Lyla is hitting Miles repeatedly and pushing him over... But I've been reminded how precious every single moment is. All the bad moments are fleeting and they'll grow up into different challenges. These days, I've been holding my little ones a little tighter and longer to savor each and every second I have them in my arms...because they're not really mine. They've never been mine; they belong to God and He has their entire life mapped out. Take some extra time today and love your kiddos no matter how difficult the day might be :-)
In other lighter news, we have a 2 year old!! Lyla is growing and exploding with knowledge making me relive the small wonders of the world. The smallest things are SO fascinating to her, things that I would naturally pass by. We were able to celebrate her 2nd birthday with family and friends. She had so much fun running around with the other kids and enjoying her cake ;-)
Lyla's next cardiologist appointment is July 17, and we'll be meeting with a new doctor because the one who's been following her since birth left to go to a different hospital. We're praying hard that they are able to get a good echo done this time so we don't have to go back for a sedated echo. From there, the doctor will decide when to do an MRI and cath.
Miles is 9 months old and is everywhere these days! He's so close to walking...but I'm not in a rush for that :-) He loves his big sister and usually doesn't even mind when she pushes him over or out of her way. He likes chasing the kitties and being outside. He likes the pool...but
does not like cold water :-)
Peter and I celebrated 5 years of being married in March. It really is crazy how fast time goes! We are so thankful for all that God has given us and we pray that we are good stewards of them.
In other lighter news, we have a 2 year old!! Lyla is growing and exploding with knowledge making me relive the small wonders of the world. The smallest things are SO fascinating to her, things that I would naturally pass by. We were able to celebrate her 2nd birthday with family and friends. She had so much fun running around with the other kids and enjoying her cake ;-)Lyla's next cardiologist appointment is July 17, and we'll be meeting with a new doctor because the one who's been following her since birth left to go to a different hospital. We're praying hard that they are able to get a good echo done this time so we don't have to go back for a sedated echo. From there, the doctor will decide when to do an MRI and cath.
Miles is 9 months old and is everywhere these days! He's so close to walking...but I'm not in a rush for that :-) He loves his big sister and usually doesn't even mind when she pushes him over or out of her way. He likes chasing the kitties and being outside. He likes the pool...but does not like cold water :-)
Peter and I celebrated 5 years of being married in March. It really is crazy how fast time goes! We are so thankful for all that God has given us and we pray that we are good stewards of them.
Tuesday, February 11, 2014
WOW!
So, I realized it's been quite awhile since I last posted! But We've been quite busy so I hope you all can understand :-) Since Miles was born, we bought a house and moved again! The Lord provided so faithfully for us and we are so grateful! By now, most of the boxes are unpacked and we're getting settled in more and more.
The holidays (Thanksgiving and Christmas) were awesome times spent with family and friends. Lyla was able to enjoy her 1st Thanksgiving feast since the year before she wasn't eating solid food yet :-) She loved the turkey and everything that was put on her plate! For Christmas, we were able to have our 1st family only present opening time as well. It was nice to sit as a family of 4, read the Christmas story
from Lyla's Jesus storybook Bible and open her presents. We then joined my family for the rest of the morning and lunch. Lyla dug into opening the presents and cleaned up after herself as well :-) Miles just enjoyed the ride along the way.
The 1st few months were really tough (and still are in some ways) for Miles. He seems to have some belly upsets and in turn is extremely fussy and cries a lot. Thankfully in the past month it is getting less due to him being able to sit up and interact more. He loves to watch Lyla run around and get her kisses and hugs. It is so precious to see them interact! What joys we have ahead!
In December, Lyla went through a sedated echo at CHOP because during the regular one, they were unable to get all the pictures they needed since she was acting like a typical 18 month old :-) As always, it was difficult to watch her get put under and come out of the anesthetic. Since she's a bit older now, she can start to see what they're going to do and she freaks out, making it harder on us as we then have to hold her down :-( However, the results of that echo were encouraging in that nothing has changed. The arteries are still narrowed, the right side of the heart is thickened because it's pumping harder to get blood through the small arteries, and the valve is leaking. These are all things we've known and been keeping an eye on. The good thing is that they are no worse than they had been all along. After consulting with the cardiac team, they decided they are scheduling another MRI this summer directly followed at the same time with a cardiac catheterization. That is the only way to accurately measure the pressure in her narrowed pulmonary arteries. At the point, they will do a balloon or stint if they feel it's necessary. It literally makes me sick to think about her having to go through this. We will need a lot of prayers as the time approaches for this procedure.
Overall, the past few months have been pretty good! I'm starting to get a bit more sleep at night on the occasions when Miles decides he can sleep through the night. My blood levels are back to normal which is an added blessing! We have just been enjoying these kids and loving being able to watch them grow! We will keep you posted as Lyla's procedure approaches and will be seeking your prayers!
The holidays (Thanksgiving and Christmas) were awesome times spent with family and friends. Lyla was able to enjoy her 1st Thanksgiving feast since the year before she wasn't eating solid food yet :-) She loved the turkey and everything that was put on her plate! For Christmas, we were able to have our 1st family only present opening time as well. It was nice to sit as a family of 4, read the Christmas storyfrom Lyla's Jesus storybook Bible and open her presents. We then joined my family for the rest of the morning and lunch. Lyla dug into opening the presents and cleaned up after herself as well :-) Miles just enjoyed the ride along the way.
The 1st few months were really tough (and still are in some ways) for Miles. He seems to have some belly upsets and in turn is extremely fussy and cries a lot. Thankfully in the past month it is getting less due to him being able to sit up and interact more. He loves to watch Lyla run around and get her kisses and hugs. It is so precious to see them interact! What joys we have ahead!
In December, Lyla went through a sedated echo at CHOP because during the regular one, they were unable to get all the pictures they needed since she was acting like a typical 18 month old :-) As always, it was difficult to watch her get put under and come out of the anesthetic. Since she's a bit older now, she can start to see what they're going to do and she freaks out, making it harder on us as we then have to hold her down :-( However, the results of that echo were encouraging in that nothing has changed. The arteries are still narrowed, the right side of the heart is thickened because it's pumping harder to get blood through the small arteries, and the valve is leaking. These are all things we've known and been keeping an eye on. The good thing is that they are no worse than they had been all along. After consulting with the cardiac team, they decided they are scheduling another MRI this summer directly followed at the same time with a cardiac catheterization. That is the only way to accurately measure the pressure in her narrowed pulmonary arteries. At the point, they will do a balloon or stint if they feel it's necessary. It literally makes me sick to think about her having to go through this. We will need a lot of prayers as the time approaches for this procedure.
Overall, the past few months have been pretty good! I'm starting to get a bit more sleep at night on the occasions when Miles decides he can sleep through the night. My blood levels are back to normal which is an added blessing! We have just been enjoying these kids and loving being able to watch them grow! We will keep you posted as Lyla's procedure approaches and will be seeking your prayers!
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