Kylie May

Kylie May

Layla Faith

Layla Faith

Zoey Noelle

Zoey Noelle


Our baby boy, due March 16th.

Tuesday, October 04, 2011

26 Weeks & Looking Good

What a long appointment (long post)! We started at 10 & got finished with all of our meetings at 12:30. There a few times in the meetings that I stopped paying close attention. When I took a step back, and thought, we shouldn't have to be talking about this. But, oh well. 

Overall, everything went pretty well. Thank you for your prayers! It went very smoothly, no tears, & got a lot of questions answered. I have been pretty 'matter of fact' in my posts/conversations. Please know that just because it's said like it is, doesn't mean it's easy to say. Trust me, I have my moments, when it's harder to talk about. So, this is how things are going (details):

We had our ultrasound and then met with Dr. Hayes for the consultation. Basically, things are progressing as they anticipated. We're still on track with the same diagnosis that they gave us. Lalya's heart is occupying all of her chest. (She has a big heart!) The size of her chest cavity is causing fluid to back up. Right now, the fluid is still "within normal limits". So, we're looking good! (The more fluid, the more likely for pre-term labor.) Although, that could change in as quickly as one week. As everything progresses, the lungs will become compressed, then the trachea, and then the esophagus.  It doesn't look like she has any lung tissue at all. Our neonatologist later said that that can change, by the time I have her. So, let's pray for that! According to what measurements they could do, Layla weighs a little less than one pound. That's tiny! 

While we were waiting for the NICU Dr., we talked to Amy, the geneticist. We weren't planning on this meeting, but it was something that needed to be done. We had to discuss all the testing & things that need to be done after Layla is born. Mount Sinai Medical School in California will be doing some research. It is also the place where they will test for an official diagnosis. There are certain things that they need, like cord blood, x-rays, and ultrasounds. This will help determine what type of the deficiency Layla has & if it is genetic (odds for our next baby). Oh, and there's a lab in Milwaukee that decided to bank Layla's DNA from the amniocentesis for free. That will also help us with the diagnosis. 

After all of that, we met with the neonatologist, Dr. Broetzman. Bryan & I had looked at a sample care plan online which helped us start thinking about everything. We discussed what would happen after Layla is born & how we want everything handled. They can't say what her survival time will be. If her heart is beating when she's born, when they clamp the cord, she will not be getting oxygen from me. If she doesn't have lungs, then it is only a matter of time before her heart stops. We plan to hold her tight & spend as much time with her as possible. They will periodically check her heartbeat. It was nice to hear the neonatologist say, "If by some miracle she comes out crying, we'll do what we can.". Yes, let's pray for that, too!

Other things we discussed with her were funeral arrangements, where Layla will go, how long we can hold on to her, calling a pastor, having a family member in charge of phone calls, etc. The hospital has a counselor that we will meet with at our next apt. It sounds like she is the 'event planner'. She'll make sure everyone is on the same page as us when we come in to have Layla.

These were a few good appointments to have, but our brains were fried afterwards! It was so much to think about, so many decisions to make. We feel better 'knowing' how things will work. But, we can plan like crazy & still not know when anything will happen or how it will go. Overall, I would say it was a good morning. 

The best part is this:

Our sweet Layla Faith :)

And coming home to this:

Sparkly flowers from Adam & Staci!

Thank you, again for your prayers and support. We feel blessed to have made it to 26 weeks! Please pray with us for her lungs to grow, the fluid to stay 'normal' and to carry her 12 more weeks! 


Lindsey Frost said...

It was nice to hear that her fluid is "within normal limits"..whatever normal is..that is a good word to hear from doctors I have learned. That little Layla of yours sure is strong! Keep fighting Miss Layla and beat those odds, you so loved so much already!

Christy O said...

Continued prayers for you all! Thanks for letting us know what is going on, so we know how to pray!!! God bless you all. Have you had a chance to check out Angie Smith? Her testimony is so profound.