Kylie May

Kylie May

Layla Faith

Layla Faith

Zoey Noelle

Zoey Noelle


Our baby boy, due March 16th.

Wednesday, November 30, 2011

Celebrating Layla Faith - What You Can Do

First off, I want to say your prayers are invaluable. Thank you.

We have had so many people ask what they can do for us. The flowers we have received are beautiful & they brighten my white hospital room. However, with so many of you asking what you can do, I don't want my apartment full of flowers. :)

So, we've decided to set up an account in honor of Layla's precious life. It will be set up through Associated Bank, under "Celebating Layla Faith". Please know that the funds will be used for something to honor Layla. We will keep you posted in the weeks to come.

Checks can be made payable to "Celebrating Layla Faith".

Mailed to:
Celebrating Layla Faith
1578 Manderly Way #7
Green Bay, WI. 54311

Or dropped off at any Associated Bank location.


Layla Faith Gruse - 11/29/11

I don't know what to say today. We are overwhelmed with the support that we have seen/heard on Facebook & through this blog. It is incredible. To see that, is what moves me to tears. I signed on to Facebook last night, and just cried through reading everyone's sincere messages. It was truly comforting. Layla Faith has touched so many lives. I signed on to the blog today, to see that over 500 people have visited to check-in on us. Wow! We are so blessed.

Layla Faith Gruse was born yesterday, 11/29/11 at 4:29pm. He heart was beating when she was born and it continued to beat while I held her until 5:18pm. She was alive to hear everyone when we returned to the room full of our family. She received many sweet kisses on the head & was held by the most important people in our life. Kylie came to visit & just had a huge smile on her face the whole time she was looking at "Baby Layla". Layla was 4 pounds & 2 ounces (much bigger than expected). She was only 10 and 1/2 inches long.

Sometime, I will write about everything that happened. Right now, I need a nap. I am feeling good, physically. We're hoping I can go home tomorrow night. I have so many beautiful pictures of our precious Layla Faith. I'll include a couple right now. I'm sure I will share more in the future.

Aside from having her yesterday and not on Dec 16th, everything went as planned. Bryan and I were so happy with the way things turned out. We said goodbye to Layla last night at 9pm when the funeral director, who we know from church, came to pick her up. She left in her beautiful white dress, pink blankie, and her hat from Auntie Sarah.

Please know that we felt your prayers last night. It was so comforting to know that we have so many people praying for us. I remember in the beginning of my blog, I said that "even if my miracle is to have an hour with Layla...". We got that :)

Here are some pics:

Tuesday, November 29, 2011

Today Is The Day

I don't know how to write this, but today's the day. We had our 34 week ultrasound and they recommended that we have Layla today. The Dr. sees pressure building up an causing her heart to compress. She is not in pain, but she is under stress. Right now, we know her heart is beating, so we've decided not to wait.

We've scheduled a c-section at 4 today at Aurora. We appreciate all of your prayers and support. This has been an incredible journey. I have so much more to write, but I'm leaving for the hospital in 20 minutes.

Thank you! We'll try to keep you posted. :)

Friday, November 25, 2011


I am thankful for a lot. My list is probably very similar to everyone else's. Faith, family & friends. If you really think about, that's all the matters. There are a lot of material things that I'm thankful for; two cars, a roof over our heads, jobs we love, but none of that matters without faith, family, & friends.

Where would I be today if I didn't know God, if I didn't have faith? I know that's a phrase people say, but seriously. I wonder what my life would be like if I didn't trust in God and believe that He cares and provides for us. We have leaned on Him for so many times throughout our life. It seems like we lean on Him a lot for material things, but in our situation right now, it's so different. We've lost our jobs and not had money & He provides (in His timing). Now, we have faith that God will carry us through this valley. He already has! I've made it to 34 weeks! I could go on & on about this. Anyway, I'm thankful to have a God who loves me & cares for me, who I can rely on for anything, and who will carry me when things are not great.

We can always count on family. I was remembering the day we found out about Layla. We had our apt and found out something was wrong. We both went to work, but I got home before Bryan. Mom, Emily, & Sarah all showed up right after Bry left so I wouldn't be home alone. Thats what family is, right? They are always there, whenever you need them. Even if you don't do anything. Just having them there is enough. ** I had to add this. It was going to be my entire post, but I'll just say: I am thankful for my husband & my beautiful daughters Kylie May & Layla Faith. They get me through the days. Kylie can always make me smile :) **

I am so blessed to have the friends I do. Again, in the situation we're in, I've realized how awesome my friends are. It's knowing that so many people are praying for my family. Knowing that I could ask anything of my friends, and it would be done. Being able to call & vent about stuff. Being heard & being challenged to view things differently. Learning from friend's experiences. I'm thankful for you, my friends who read this blog & who keep us in your prayers and encourage us everyday.

It's been a busy week. Having only 3 days to do 5 days worth of work was interesting. We had an excellent relaxing Thanksgiving at Gruse's. Kylie was a little under the weather today. She slept until 9:30 on the couch, ate a little, napped a little and is going to bed now. Doing better tonight than she was this morning. I shopped with mom & Sarah. Sarah was due with baby #4 yesterday, so we were walking a lot! Found some great Black Friday deals even in the afternoon. We're hoping to do some Christmas decorating tomorrow before Bryan goes to work. Another busy week ahead. I think time will fly from now until Dec 16th!

I have a few more posts that I want to write, it's just a matter of finding the time! Oh, I was asked to work more hours & I started last week. So I'm working all day on Mondays & Wednesdays now. Also, Layla's apt on Tuesday was great! We have an ultrasound this Tuesday.

Please keep praying that we make it to the 16th. I am just amazed when I realize we've made it this far! Our prayers are working :)

Monday, November 21, 2011

Still Doing Good

I follow a few blogs, and when I don't see a post for a while, I always wonder if everything's okay. Just wanted to say, yes. Things are still good. We have a 33 week heartbeat appointment tomorrow morning. I'm sure I'll post something after that!

For now, enjoy a couple family pictures that my best friend Crimson did a couple weekends ago!

Tuesday, November 15, 2011

One month away!

Again, I'm so happy to be able to say that we had another great appointment! Mom is in Florida with my sister and newest niece, Lucienne! So, my sister Sarah came to take notes. It was special to have her there to see my cute little Layla and her beating heart :)  I saw our 'routine appointment' through her eyes today. There really is some routine to going in every tuesday for a heartbeat and every three weeks for an ultrasound. I think that will be missed after having Layla. I know most of the staff at both of my Dr. offices, to the point of them saying hi to us in the cafeteria!

Our ultrasonographer is such a sweet lady. At the end of our ultrasound with her, every time, she says we're in her prayers and gives me a hug. My ultrasound today wasn't as uncomfortable as the last one. It's just a long time to be on my back. But I'm distracted with tying to decipher the images on the screen, trying not to ask what it is too often. We got a great profile picture of her whole body today. It's so tiny! They said she's measuring at about 2 pounds, but again, they don't have a way to measure. (Her femurs are small and her head and abdomen are enlarged.)

Then we met with Layla's Dr. He said that the images today continue to confirm the diagnosis of her Lethal Skeletal Dysplasia. I asked about her lung tissue. He explained that yes, there is lung tissue, but it is not the functional lung tissue or the oxygen exchange area. Basically, it's not the part that you see on commercials for asthma inhalers that fills up with oxygen.

Bryan always asks the question of how we are progressing, as expected, faster, estimated delivery day, etc. We were both so pleased with the response. Probably more dramatic than it really was, he paused, looked at Layla's picture on his computer screen and said, "I'm amazed that the baby is doing so well". See, I was just waiting to hear him say that he never thought we'd make it this far. Even to carry Layla as long as we've been able to, is a miracle. Maybe that is our miracle. He continued to say that there is no definitive way to say what will happen & when. Then, he noted that we're trying to make it to December 16th & said that's sounds good to him. Oh, another thing that made me happy. Our Dr. asked if the baby has a name. I told him proudly, Layla Faith, and he wrote it down. I feel like that's the first time he's acknowledged that she's our baby, not just 'the baby'. 

We met with our geneticist again today. She's very good at stalking us when we're at the Dr. She always pops in to our apts or while we're waiting to meet with the next person. We've sent our consent forms to Mount Sinai. We had to give blood today and our ultrasound images were on there way. They'll start to study our case now and then get more details after Layla is born. 

Our appointment was done and while we were waiting to give our blood it dawned on us that tomorrow is the 16th! That's thrilling to me. We're only one month away from holding my little Layla. We can make it four more weeks. We've made it this far! We have a heartbeat next week, and another ultrasound on the 29th. I think this last month will go fast. 

One last thing, sorry this is long! I know I could probably summarize it better, but why start now? This phrase has been stuck in my head. It's part of a song that I used to LOVE to lead at church. It's the bridge of the song, all of the instruments stop, and I could just stand there and proclaim, 

"All of my life, in every season, 
You are still God. I have a reason to sing.
 I have a reason to worship."

A lot of you know exactly what I'm talking about :)

Praise God that we've made it to 32 weeks. Praise God that we will make it to December 16th. Please pray that through the next four busy weeks, I have time to think about Layla & enjoy her while she's still here. 

Thank you for your prayers! Today's appointment is proof that God is the best Dr. and He knows the plan!

Saturday, November 12, 2011

Dancing In The Minefields

I've wanted to write this short blog for a while, but couldn't find the time. While Kylie is watching Tinkerbell, I thought I could get it posted. I've been home without Bryan since noon, so she is due for some 'tv time' & I'm due for some 'me time'. Pregnancy is getting to me, and I realize I'm losing it. No patience with anyone & always needing the house clean! This post is to say thanks to my Bry.

This has been a challenging few months for us. I'm anxious for the new year, when we can 'start over'. When I hear about other people's relationship through friends or on the Mark Gungor show, I realize just how lucky I am. Marriage isn't easy. Nobody ever said it would be. There are ups and downs and it takes effort to make it work, especially through the downs. It's not one-sided, it's a team. We're in it for the long haul.

I heard this song the other day. Andrew Peterson's "Dancing In The Minefields"

We're dancing in the minefields
We're sailing in the storm
This is harder than we dreamed
But I believe that's what the promise is for

That's what the promise is for. We've been through a lot in six years & never thought we'd have to go through something like this. 

Bry, in the face of all this chaos, I'm glad I get to dance with you. Love you :)

Tuesday, November 08, 2011

Feeding Faith

This might be a long post. I feel like I've had a lot to write. I'll begin by saying we had an appointment for Layla this morning. It was our 31 week heartbeat appointment. Her heartbeat was 165. Dr. always says she's happy & wiggly. I asked if she could tell what position Layla was in, and she pulled in the portable ultrasound machine. It's always fun to take a look. She is mostly on my right side and is not head down. All of the excess fluid is on my lower left side. We'll find out why and what that means next Tuesday. Last week I was measuring at 34 weeks (4 weeks ahead of schedule). This week, I'm measuring at 36 weeks, which means I've grown "2 weeks" in one week. It is mostly all fluid that is building up. I was trying to do the math, which means I'd feel like I'm 40 weeks in 2 weeks. Please pray that the fluid stops building up and that I don't go into pre-term labor. Layla's Dr had previously said he didn't feel that a therapeutic amniocentesis was necessary. That was when I was 20 weeks, and he didn't think we'd make it this far. So I'm going to ask again, but I'm not sure what the point of it would be. It was cool to see Layla again today. You can really tell our Dr. loves what she does. She explained so much to us, while looking at the ultrasound. Showed us where her heart, eyes, teeth, fingers, tummy was. I'm sure it was interesting to her, too, since she hasn't seen Layla and her cute little arms and legs. Overall, it was a good appointment. 

My sister, Emily, is days away from having her little girl in Florida. Mom is there visiting and helping with Isabelle. We're anxiously awaiting news when she's born!

My sister, Sarah, is 2 weeks from her due date. We have the same Dr, and usually have our appointments on the same day. It's always nice to see her before my appointments. We have our 32 week ultrasound next Tuesday, so Sarah's coming with since mom's in Florida. I had mentioned to Sarah that I was looking for a hat for Layla that would be small enough. Today she gave me one that she found at a craft fair. It was made for a doll & it's perfect! 

Kylie was Vanna for me. 

On to what I wanted to write about, feeding faith. On Friday/Saturday I went on an annual shopping trip with Bryan's Aunts and cousins. It was really a great time. We spent the night in a hotel an stayed up late talking about Layla and other things. If any of you are wondering, I love talking about Layla. Of course, some days are more difficult and I'm more emotional, but typically it's a joy to talk about her. She's still my little baby and I'm already proud of everything she's been able to do from in there. 

God can do it, He will do it for me, and even if He doesn't. Well, I look back at my earlier posts and I was very focused on the first two. Recently, I've been in the mindset of 'even if He doesn't'. Now, I don't think it's wrong for me to think realistically and plan for Layla not making it, however, I've been fed faith these last couple days. 

On Sunday, I was able to talk to a family that is going through a hard time. I was telling them how cool it is that they're being so positive and faithful. She said we're 'feeding off each other'. That's so true. Surrounding yourself with positive people makes all the difference. We're so blessed to be around people who are constantly reminding us to be faithful. A co-worker said, "What if Layla's in the NICU at Christmas?". That would be awesome!!! Another close friend said that she is praying so hard and is so convinced that Layla will be healthy. She is ready to show the Dr.'s that they're wrong. The other phrase I heard was "God ain't done yet!". Amen. God isn't done yet! 

I've been so focussed on losing Layla. I've been thinking about a memorial service and ways to honor her. Thinking of Christmas without her, how I will be after she's gone. But God ain't done yet. We need to keep praying for a miracle. At our apt on Tuesday, I'm praying that they will see more lung tissue & signs that she is practicing breathing. I'm praying that the fluid will decrease and stop building up. I'm praying that I don't go into labor early, and that we can make it until December 16th!

Thank you for praying with us and for feeding us faith. I pray that our story is feeding faith to someone out there. 

Thursday, November 03, 2011

Overwhelming Support

I couldn't wait to share this with my blog people. It was an average day at work, and a friend stopped in to say hi. She said she had something for me.

How cool is that? She made these ribbons for Layla. (I, sadly, didn't notice right away, that the beads make an 'L'.) I was lost for words and shocked that someone would make these for us. I can't stop saying thank you to everyone who prays for us & especially Layla Faith. The support has been overwhelming.

Kylie May asked what my pretty ribbon was for. I explained it to her and she asked for one. She proudly wore it on her jacket while we were out. When we got home, she needed me to move it to her shirt so she could still have it on. She gets it. She knows its for Baby Layla. :)

Tuesday, November 01, 2011

Layla Update - 30 Weeks!!!

I can't believe that we've made it to 30 weeks! It's really crazy to look back at things that the Dr.'s were saying 12 weeks ago. I don't think they ever thought we'd make it this far. I love proving the Dr.'s wrong. We had a great appointment this morning to listen to Layla's heartbeat. It was a happy 160. I haven't been feeling good the last few nights. Just really exhausted. I just need to rest more throughout the day. I am measuring at 34 weeks, and I'm technically 30. It's a little big, but my Dr. said not to worry about it. (Increased fluid/size = preterm labor.) Basically, I 'feel' like I'm 34 weeks along. We'll be able to tell how the fluid looks at our next ultrasound on the 15th.

The big news is that we'll have Layla by December 16th! Here's the story. If I don't go into labor early, we will go in on the 16th to induce labor. If it causes stress to me or Layla, we'll do a c-section. Either way, the 16th is the latest we'll have her. :) We're excited and nervous. It's really weird to have a date, but very nice to have a goal/plan/idea of what will happen. I will be almost 37 weeks. All of our Dr.'s approve. Please pray with us that I will make it until then!

The increase in fluid gives the Dr.'s reason to believe that I'll go early. That being said, we need to be ready in case something happens any day. I've been trying to think of things that need to be done. My list is not a typical list for an expecting mom. My list says; start talking to Kylie about Layla & heaven, decide on a funeral home and arrangements for Layla, pack a bag for the hospital with Layla's special dress & blankets, pack the keepsake box from String of Pearls, make a list for Bryan of who to call when Layla's born and talk to our employers.

While thinking about all of these things, it's hard to realize that after Layla is born, life will go on as normal. I know that emotionally things will be different. But, besides not being pregnant anymore, physically, nothing will change. We won't have a little baby at home to focus on. We won't have a little baby to show off. We won't take 3 months off of work to be at home with the baby. While I was watching my favorite tv show, Parenthood, I saw a commercial for Johnson & Johnson. Their slogan was, "Having a baby changes everything." Yes, it does. I know that from having Kylie. But, how/what does it change when your baby doesn't come home? I guess I'll let you know.

Thank you for the support thought this journey. Your encouragement & positive outlook have made this 'easier'. Please keep us in prayer for these next six weeks.

-that fluid does not increase
-that I can carry Layla until 37 weeks
-for wisdom when talking to Kylie
-for wisdom when making decisions about Layla
-comfort when we have Layla

I probably don't need to ask, but please don't forget about us after Layla's born. That is probably when we'll need you the most. We have no idea how this will effect us and our family. Oh, and I'll add something to my list; find someone to update the blog when we have Layla. :)