Kylie May

Kylie May

Layla Faith

Layla Faith

Zoey Noelle

Zoey Noelle

Boyee

Boyee
Our baby boy, due March 16th.

Thursday, December 29, 2011

One Month - A Heavy Heart

I feel like I should post something to recognize that it's been one month since Layla Faith was born. It's weird to say that because it's also been one month since she passed. I don't have a purpose for my post, necessarily. I feel like everyone should know and everyone should remember that it's been a month. However, I'm probably the only one who's been thinking of it all day long. I woke up thinking about it & remembering everything about the day one month ago. Today, I realized what it means to have a heavy heart. My heart was heavy today. I wasn't overly emotional or sappy, but my heart was just sad.

I'm glad I'm home right now and I find it ironically perfect that Bryan is home tonight. I thought of her at 4:29 when she was born. I got home at 5:11 and I remembered, Layla passed away at 5:18. She left the hospital with our funeral director around 8:50. I wonder how long I'll think of her when I look at the clock at those times.

For those of you who were with us at the hospital, thank you and I'm so glad that you can share in the memories and the time we had with Layla. For those of you who lifted us up in prayer and supported us the weeks leading up to and after her birth, Thank You.

...and now that I'm crying from rereading my post...off to get Kylie to bed!

Wednesday, December 28, 2011

Love Song for Layla

I am a creator. Hence, the blog and everything else in my life. This blog has been therepudic for me. It fills my need to create and surprisingly has been a word of encouragment to so many people. I create videos all the time. Mostly for weddings & work. But, I've only written one song before. My friend and I wrote it for our youth pastor when he left our church. (Also the pastor who married us and was with us when Layla was born.) Anyway, I want to create something for Layla. I don't know where to begin. I've made this blog into a book, which is neat to have. I could make a video or write a song. I could make a website for people in a situation like mine. I don't even know where to begin.

I remember in high school, filling out a questionaire. One of the questions was, "What do you do to relax?". Now, I guess I would add "If you had time for yourself, what would you do to relax?". My answer then, and still: I would blast some excellent music in my room and sing my heart out. :) And take time…and think and pray and read my Bible. I loved doing that in high school. I had time to do that in high school.

If I did that today, I would start with this song. It takes me back to the moments that I had with Layla. The second I hear it, I can't keep in the tears. It is such a gorgeous song and her voice is so passionate. I know it's a love song, written for a wedding. But for me it's a love song for Layla. I was brave. I cherished evey minute with her in my belly & while I held her in my arms. I have loved her and I will love her for a thousand more years.

Time stands still
Beauty in all she is
I will be brave
I will not let anything take away
What's standing in front of me
Every breath
Every hour has come to this

I have died everyday waiting for you
Darling don't be afraid I have loved you
For a thousand years
I love you for a thousand more

Tuesday, December 27, 2011

I Had A Baby

The age of a baby. It's probably the most common question that people ask you as a mom, "How old is he/she?". Have you noticed that it gradually changes from hours to weeks to months to years? I had a baby four weeks ago today. I'm still in the 'week' stages. Soon, I'm sure I'll move on to months and eventually years.

I want people to know I just had a baby. Like the lady who did my nails or the bank teller or cashier at the grocery store. I want to have my tiny 4 week old with me and get the "awwww, how old is she?" question. Not just that, but I feel like I need to explain why I'm still wearing maternity clothes or why I try not to pick up heavy things. Oh well. I want to show off my Layla!

The only thing that does that for me, or opens up the conversation to talk about her is this necklace. 


I've worn it everyday since I picked it up. We had Layla cremated and a small amount of her ashes are in this heart necklace. My favorite things about it:

- it's close to my heart
- it gets warm. I know it sounds silly, but I remember holding Layla and thinking how warm she was. I touch this necklace throughout the day when I think of her, and it's warm.
- Kylie knows it's 'from Layla'. She woke up the other night and came to cuddle with me on the couch. With her eyes closed, she reached for my necklace and held onto it as she fell asleep. I know she probably doesn't really get it, but it made me happy.

I always miss Layla, but I thought of her a lot this weekend. It was Christmas, after all. On Christmas Eve, I just kept thinking of wanting her with us. Sitting around the tree opening presents. I wanted her in my arms. I wanted her to get passed around or interrupt me to eat. I almost felt like it was boring without her. I think moms can relate to what I mean. It takes time to be ready for another baby, and I was ready. So, as I've said before, I guess I'm kind of ancy for that. In due time.

Friday, December 23, 2011

Merry Christmas!

Christmas is the season of giving. It began early for us, when we had Layla. Thank you, for giving. Bryan, Kylie and I have been truly blessed to be on the receiving end of all of your generous gifts. It has made this season brighter. It means so much to have such support. We are in love with our 'church'. And, if you read this post, you know I'm talking about you.






"The generous will prosper; those who refresh others will themselves be refreshed." - Proverbs 11:25






Be refreshed this holiday season. Merry Christmas!

Monday, December 19, 2011

"It's a Process"

We had a perfect party for Layla on Saturday afternoon. It was an open house with desserts and coffee. (I'll post pics soon.) A lot of our family, friends, and people we hadn't met yet came to Celebrate Layla Faith. I smiled and laughed and bragged about my little angel. And cried just a little bit. 

I got a lot of comments about my blog. A lot of "Thank You"s and "Don't stop writing" comments. I was kind of surprised by that. I don't feel like you should be thanking me. Someone said that my sharing is such a selfless act. I don't feel like it is. In fact, sometimes I think it's selfish of me, to think you all care to know my thoughts. But, a lot of you told me not to stop, so I won't. Everyday, I have so much that I could share. So many emotions, so many revelations. Things that I'm thinking about or even just cute things that Kylie says. (On the way to school today, I wasn't talking to her as much as usual. She said, "Mom, are you sad because you miss Layla?" I responded with, "No. Well...not really right now." Kylie said, "Oh, you're sad. Just not crying?" Oh man, my sweet 3 year old knows me better than I do sometimes.)

Something I realized from a couple long days, is that I can physically work for 8 hours, but not emotionally. I know I say those two words a lot. It's the only way I can differentiate between the two. When I'm at work, I'm doing fine. I have things to occupy my mind. Plenty of things to do. But then, when I get a minute to think about myself and Layla, it's hard. Then I get home with Kylie at 5:30 and Bryan is at work, I just don't have any energy left. I don't have any patience. I practically don't even have energy to talk to her and listen to her and enjoy her. Please don't get me wrong, I love her to pieces. I love being home with her. I just don't feel like I can give her what she needs after working all day. Thankfully, this only happens a couple days a week, and it's just a busy season right now. I know that it will ease up a lot after Christmas and especially after New Years. 

It was hard, to carry Layla. Knowing that she wouldn't make it. I knew that there would be this period of grieving, but I had no idea what to expect. It's hard. Yes, I feel strong. I feel good. But, that doesn't mean it's not hard and different. I feel like I should be able to take some Tylenol and feel better. Like I'm in pain and it should just go away in a little bit. Like I should be able to look at the calendar and say, well, everything will be normal after the new year. But, I don't think it's going to be that easy. 

"It's a process.", you know, all the counselors tell you that. And "everyone grieves differently". Blah blah. People can say that all they want. But until you're in the situation, you don't get it. You don't get how it will effect your relationships with people. People you've never met and people you've known forever. I am grateful that I know a few people (through the magnificent internet) who have been in this exact situation. I rely on them sometimes to validate my feelings. To say they remember the feelings. To convince me that I am "normal" even though I don't feel it. 

I think this is going to be a long road. Thank you for thinking of me and Layla and the rest of my family. Thank you for your continued prayers and support. God has been good to us. We're trusting God to comfort us and help us understand things. We're still 'going through' a lot. "It's a process." :)



Thursday, December 15, 2011

Layla's Impact

I have written so many posts in the last couple days. I decided to condense a few.

1 - Nobody should get sympathy cards and Christmas cards at the same time. That stinks.

2 - My brother-in-law and his fiance are teachers at a school in Milwaukee. The teachers there had teddy bears donated to the Children's Hospital of Milwaukee in Layla's name! It made me so happy to know that Layla is still making an impact in other people's lives.

3 - My mom's Aunt & Uncle sent a card and a note saying they sent a donation to Faith's Lodge in Layla's name. Come to find out, Faith's Lodge is a place for people who are coping with the death of a child. It's located in Danbury, WI and it's the only place like it in the country! What a unique gift that will help the healing process for someone who is going through this situation.

4 - Kylie was telling me a story the other night. "Once upon a time, there was an angel named Layla. She had a little big heart." It made my heart smile. I always talk to Kylie about Layla. I want her to remember her little sister.

5 - I received a pretty cool gift the other day from the MOPS group at our church. It's a piece of wall art that says, "Faith shines brightest in the dark".


Matthew 4:16 - "the people who sat in darkness have seen a great light. And for those who lived in the land where death casts its shadow, a light has shined."

Thank you, ladies. I know you have been thinking and praying for me and my family so much. I love this gift as a great reminder of the blessings that have come from this journey.

Your gift has also trigged a few more thoughts that I'll blog about soon. :)

Tuesday, December 13, 2011

All Grown Up (cont.)

I'm all grown up...and I'm proud of it. I don't want the old me. I've learned a lot about myself.
- I've grown, a lot, in my faith. 
- I appreciate the little things. 
- I love my family, even more than I did before. 
- I know that my friends support me, no matter what.
- I got to carry my daughter for 34 weeks. 
- I showed Dr's that my baby was a baby, even at 18 weeks. 
- I got to hold her tiny little body, while her heart beat for an hour. 
- I have my very own angel. 
- I have a great story. 
- I feel like I could do anything, because I've done this. 


I love the new 26. I wouldn't trade it for anything. I'm stronger than ever.

Sunday, December 11, 2011

All Grown Up

In the span of four months, I grew up really fast. We found out about Layla's diagnosis in August and it's now December. Those four months went by pretty fast. In the beginning, I couldn't wait for what I have now. But, now, I want to go back about a month & know what to expect, know what to cherish, know what to do. I remember writing in a post, "How do things change when your baby doesn't come home?". I don't know how to explain the feeling of how things have changed, but they have. 

I remember reading a blog post that I found online a couple weeks after we had that 'life-changing' ultrasound. It read:

There is no word for this. There is no word for this beautifully excruciating state of being, in which a parent has been separated from her child by death. There is no term to express the existence of a parent on earth while her child lives in Heaven. Why is that?
            A person who has lost a spouse is a widow or widower. A child who has lost her parents is an orphan. They have terms to describe the change that took place in that moment of loss. They have terms to label their “new normal.”
            I don’t.

When I look at my life before August, I feel like I was young. My life was easy. Our Pastor's message today was titled, "God Trusts Young People". Mary, is thought to have been only 13 years old when she had Jesus. I guess, my question to that is, why? Is it because we still have childlike faith? Is it because He knows that since we're young, it will grow and stretch us like crazy? Is it because He wants us to learn to trust Him early in our lives? 

I'm only 26. But, I'm a different 26 now than I was before Layla. Different than I was before I had to pick up my baby's things from the funeral home. Her ashes, her beautiful white angel dress, her knit hat from her auntie, her pink blankie, and the wristband she wore at the hospital. I walked in the chilly air, down the sidewalk of a busy street, with a black bag of my baby's things. That was the moment that I realized, I'm all grown up.  


Wednesday, December 07, 2011

Celebrating Layla's Life

We will not be having a funeral for Layla. Instead, we've decided to celebrate her short life that has made an impact in so many lives. (You are all invited.)


Monday, December 05, 2011

Layla's Story

It was the typical Tuesday for us. An ultrasound appointment after we dropped off Kylie at school. My sister had an appointment with our Dr., and we had a couple questions for her. So, we stopped in and got our answers. We talked with Sarah & Chad for a little while. Then Mom, Bryan and I headed to our ultrasound. We should have known something was up from the very beginning. We had these ultrasounds every three weeks and always had the same routine. 

We went in a different door, had a different nurse, different room, different ultrasound tech, etc. It really irritated me. If you know me well, I like consistency. The ultrasound was very uncomfortable. We couldn't really get a good view of Layla (I blamed it on the different technician). Then we went in to see Dr. Hayes.  I didn't pull out my notebook for mom, because after making it to 34 weeks, I figured it would be the same as usual. When we got into the Dr.'s office, he started by saying, "This is why we've been having ultrasounds every few weeks.". So, I immediately pulled out my notebook an gave it to mom. 

All I heard was "You should deliver in the next week. The sooner, the better". Then I started crying and stopped listening. Mom's notes say that Layla's chest pressure was elevated and there was significantly not enough blood. I remember he kept saying that her demise would be in the next week or two. What an awful word, demise. 

We went to my Dr.'s office to schedule the c-section. Sarah & Chad came back to be with us. Our initial thought was to wait until Wednesday so we could spend the day with Kylie. I couldn't stop thinking about her. I just wanted to see her. Then we changed our minds to later on Tuesday evening. Chad made a good point. He said, "We know her heart is beating now. Why wait?". It was 12:15, we had to be back at 2 for the surgery at 4. A friend picked up Kylie from school & kept her for the day. The more normal, the better for Kylie. We all went home, packed up our bags, emailed work, posted a blog, made phone calls & went back to the hospital. 

Mom & Dad Gruse were there when we got there. We spent the next hour and a half prepping. Pastor Ross got there at 3:20, my Dad, Adam & Staci a little later. I made everyone wear a Layla ribbon & laid out all of her clothes for when we got back. Chad had worked with the anesthesiologist in the past. He explained our situation & asked if my mom & sister could come in the OR with us. He okay'd it and mom, Sarah and Bryan got in their scrubs. Just before we left, Pastor Ross prayed for us. 

Right after the Dr. pulled Layla out, they showed her to me. Finally, I got to see my baby! They wrapped her up and I held her up close to my left shoulder. I could feel her wiggling under my left hand. I knew her heart was beating. Her beautiful lips were open and she moved her mouth. She didn't open her eyes. Every couple minutes I could feel her try to take a breath. She did it four times. Bryan had his hand on her, too, and could feel her. Sarah & Mom had to stay in their seats, but got up a few times to come & see her. 

Just before we left the OR, I asked them to clean her up a little & put the hat from Sarah on. They bundled her up & gave her back to me for heading back to the room. Her heart was still beating. I remember being rolled down the hallway and seeing one person after another who was there for us. So much love. (I'd like to mention that the only person missing was my sister, Emily. She lives in Jacksonville, FL & obviously couldn't make it. She was there in spirit.)

I held her for a long time before letting anyone else hold her. Adam was in charge of my camera. I just wanted so many pictures. Bryan told him to "just keep snapping". After we got 'settled' in the room, Pastor Ross prayed over her. Bryan held her. Our nurse, Ann, from Dr. Hayes's office & our geneticist, Amy, came in to visit. Sarah was the first to hold her, other than me and Bryan. As far as we know, her heart was still beating. After Sarah held her, we unwrapped her blankets so we could see the rest of her tiny body. We admired it for a minute, and then Dr. Winburn came to check her heartbeat. There was none.

We continued to pass her around. Staci, my mom and Bryan's mom all held her. By this time, Kylie was on her way to visit. So, I wanted Layla to have a bath & be in her dress before Kylie got there. The nurses bathed her, so sweetly. They washed her cute dark brown hair with baby shampoo. We all watched as they got her dressed. Her angel dress was too big, but the nurses taped it in the back so you could see her little arms peeking out. 

I held her again. She smelled just like any other newborn who just had a bath. I gave her so many kisses and held her tight. Kylie May got there just after her bath. Bryan met her in the hallway to explain what was going on. She smiled so big when she saw me & Layla. She sat next to me, touched Layla's cheek & looked around at all the people in the room watching us. Kylie was only there for 15 minutes, but it was perfect. I'm so happy we decided to have her come. It was so good to see her with her little sister. 

The hospital has a photographer that volunteers her time to do pictures. She came in and did pictures of Layla. I haven't seen them yet, but I'm sure they'll be treasured. After pictures, they brought the x-ray machine up so Layla didn't have to leave the room. They took two x-rays for the research. 

Everybody was out of the room for the x-rays. My dad came in & held Layla. Then Bryan's dad came in and held her. We talked with Pastor Ross for a while before he left for the night. He had called our funeral director for us to arrange everything. He held Layla and we had a nice talk & prayer. 

The nurses did hand & footprints while people were leaving. When they were done, I held Layla. Bryan and I cut a piece of her short hair to save. She was still in her pretty white dress & pink blankie. We put her hat back on and waited for the funeral director to come at 9. Mom & Sarah were the only ones left. They gave us a few minutes to say good-bye. 

The day was so long. I was exhausted, both physically & emotionally. Sarah and Bryan left around 10:15. We wanted Bryan to get a good night's sleep. Mom stayed with me for the night. I remember saying, "I want to write a few things down so I don't forget." It turned in to me telling mom things to write in my notebook every five minutes while I dozed off to sleep. Those notes and the pictures are what I used to write this. I don't want to forget. I'm sure I never will. 

Saturday, December 03, 2011

Home, Sweet Home

I've missed you! I feel like it's been so long since I've written. This is such a nice outlet for me. I've been thinking about writing a nice long post about Layla's Story for a couple days but haven't had time. Maybe after Kylie goes back to school, I'll have some time to think & write.

We're home. We came home on Thursday afternoon, just shy of my 48 hour mark. I'm pleased to say that I recover very quickly from this (I did with Kylie, too). So, as I've said before, I'm doing good physically. Being home has been a dramatic switch from being in the nice quiet hospital room. I don't remember it being this way with Kylie, but obviously this is different. My first day home, yesterday, was really rough. My best friend, Crimson was here & helped make my house look nice while I sat on the couch. Adam & Staci were great, too. They cleaned, did laundry & dishes, and watched Kylie. It was so perfect to have them here.

I've emotionally been on this roller coaster. I'll be okay for a while, then something just triggers the tears. When Layla was in my tummy, every night before bed, Kylie would pull my shirt up and talk to Baby Layla. On Thursday night, she was sitting by me and said, "I want to say hi to Baby Layla" and pulled up my shirt. Through the tears, I had to remind her that Layla was in heaven with Jesus. She asked why I was crying and I told her I miss Layla. Then she snuggled with me & said she missed her too.

Two kinds of sad. I don't know if this makes sense. But when I think about holding, smelling, and kissing her, I am sad and brought to tears. But, when I think her as my sweet little angel in heaven with Jesus, I'm sad but in a different way. I received a blog from a dear friend a couple days ago. It has given me the perspective that I need and helped me to acknowledge that Layla's tiny body was just her shell here on earth.  I am comforted by the fact that Layla's soul is in heaven and we will see her again. A loss here on earth is not final, it's temporary. As Christians, we have hope and we will be reunited in heaven.

I would love to respond to every single one of your messages. I have read and probably re-read all of them. We are so blessed to have such a great support system. We know we can lean on you for anything we need. Thank you for the food, gift cards, Celebrating Layla Faith donations and prayers. We feel so incredibly blessed. We can't say thank you enough.

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.

THANK YOU!

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

Thankful

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.

Faith:
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.

Family:
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 :) **


Friends:
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.

Pray:
-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. :)

Thursday, October 27, 2011

Growing Through Song

I used to love Ginny Owens. I had her cd in high school. I knew every word to every song. I think I even saw her at the Cup O' Joy. 

Music is funny, isn't it? It can bring back so many emotions, feelings and memories. I thought one of her songs meant something to me when it was on the radio in 2000. Eleven years ago! I was 15! 

Well, I heard one of my old favorites of hers on the radio the other day. I can't get it out of my head. I remember the words like I did when I was 15. They mean so much more to me now. It is what I have grown to learn and accept through this journey. A lot of you probably know the song, "If You Want Me To". It's a lot to read, but it is my proclamation. I will go through the valley and the fire, if You want me to. 

The pathway is broken
And the signs are unclear
And I dont know the reason why you brought me here
But just because You love me the way that You do
I will go through the valley
If You want me to

Now I'm not who I was
When I took my first step
And I'm clinging to the promise
You're not through with me yet
So if all of these trials bring me closer to You
I will go through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my own
But You never said it would be easy
You only said I'll never go alone

So when the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to

Wednesday, October 26, 2011

Kylie May is 3! (and a Layla update)

We had a perfect birthday weekend. Bryan was home Saturday & Sunday, so that was a treat! All three of us made snacks for the party. Bryan & I couldn't wait to give Kylie her present, so we did that too. She loves it (pink train set).

We had Kylie's party at Kidz Town in Howard. A few close friends and family came for munchies and cupcakes. I highly recommend having a party there! It was so nice to let the kids run around and play. We actually had to corral them for cupcakes & gifts! Thanks to everyone who came & gave Kylie some awesome toys & clothes.

Our 29 week ultrasound appointment for Layla Faith was yesterday. She was in a really weird position so the actual ultrasound was a little painful. I think it's just getting harder to lay on my back for so long. We didn't really get to see her because of her position. The tech just got most of the measurements she needed, so it was quick.

Then we had our meeting with the Dr. We've known the diagnosis for 11 weeks and at each appointment we have less & less questions. I think we know 'everything' there is to know. He said that my fluid is still 'within normal limits'. That typically increases at 32-34 weeks. She's grown a little in the past three weeks. She was 14 oz and is now one and a half pounds. Our Dr. seemed very interested in how we are doing, not as focussed on Layla, since not much has changed. He wasn't as 'doctory', which was kind of nice.

We signed some paperwork for the geneticist & the study that they'll be doing after Layla is born. Then we met with the hospital's social worker. She knows all there is to know about this situation. We found out that there are a couple local funeral homes that provide their services to families with children for free. The hospital also has their own photographer for after Layla is born. They also provide us with different keepsakes, like a baby ring necklace & footprints, etc. It was nice to know that they will take care of everything for us, so there's not much for us to think about.

Well, here are a couple pics from the weekend.

Her train set. 

Playing at Kidz Town.

Ella, Kylie, Rosie


Eating cupcakes!

Playing with balloons.





Friday, October 21, 2011

I'm Pregnant, I Want a Baby

Bryan and I went shopping yesterday for Kylie’s 3rd birthday! We both can’t believe that our little girl is already 3. We’re so blessed to have a ‘perfect’ child. (Every mom can say that, right?)

That is what I need to remember. I think that every single day. I stop & look at Kylie, or smile because of something she says, and I realize how blessed we are to have her.

I want a baby. I want to wake up all hours of the night to feed my baby. I want to bundle her up in layers to go outside with Kylie and me this winter. I want to watch Bryan talk to her about football and the Packers. I want to give her bath and put lotion on her before putting her in jammies. There are so many things I want to do with our baby. 

When we were shopping yesterday, I couldn’t help but want to look at all the cute baby clothes and baby bedding. It just really made me want a baby. Now, I know that I have to be positive & have faith that Layla will make it though all of this. Trust me, I have faith. I can picture it happening. I would LOVE to be caught off guard when she’s born & have to find a car seat. But, I know the facts, too.

I was thinking about the future. I’m a little bit ancy about it actually. We found out we were pregnant with Layla in March 2011. We’ll have her by January of 2012. With some time in between having her and getting pregnant, the earliest we could have another child is November 2012. Which is really fast! Basically, it’s going to be about two years of waiting to have a baby. Not just waiting, but 18 months of being pregnant!

I know of two or three of you reading this right now that don’t feel sorry for me. Probably more than that. You put this in perspective for me. You aren’t able to have children of your own. I cannot even imagine finding that out or getting through that. I have one close friend who adopted a little girl, a family member who adopted a little infant boy, and a previous co-worker/friend that just found out she will not be able to have kids of her own. This just makes my heartache.

I also wanted to make this note. I AM sincerely happy, joyful, excited and anxious for those of you who are pregnant or who just had your babies. It makes me jealous to see you holding your babies and dressing them in cute clothes. That’s my own issue, not yours. Don’t feel bad talking to me about your baby. If anything, I’m probably going to live vicariously through you. I can’t wait for my two sisters to have their babies (in November)! One girl, one boy!

I am blessed. I know I can have more kids. I don’t know if they’ll be healthy, but we have two adorable little girls. One is a princess. The other, an angel.

Tuesday, October 18, 2011

Fantastic Weekend

I'll start by saying, we heard Layla's heartbeat today! Our next apt is next tuesday. It's a long one with an ultrasound, meeting with the Dr. and geneticist, and hospital grief counselor.

The Bricker family came to visit this weekend. They got here early Saturday morning. We made a trip to Delzer's Pumpkin Farm in Oconto. It was a ton of fun. Saturday afternoon, we went shopping at Hobby Lobby & redecorated Kylie's bedroom! It's so cute. I'll have to get some pictures together! Matt & Crim worked at the church concession stand at the Packer Game on Sunday, so Bry and I took the 3 girls to church. I had to stay & work, so Bryan brought them all home. After the game, we had chicken tacos & they headed home. It's always so nice to have them visit for a long weekend & actually just relax and let the girls play!

Our little princess Kylie May will be three on Sunday, so we're getting ready for her party. For now, I'll post some pictures from last weekend :) (p.s. You can click on any picture to make it bigger.)

Finally, a good family picture. 

"The Girls"

We had our share of fun, too.

My growing baby bump.

Rosie had just slept for 3 hours. Kylie & Ella just fell asleep. 


It was a fun-filled weekend. But, it was pretty exhausting! Totally worth every minute :)



Tuesday, October 11, 2011

Remain Steady

I know some of these posts are probably getting boring. I'm glad! I don't want any excitement. Slow & steady. I'm 27 weeks & had an appointment today. As usual (so glad I can say that), Layla's heartbeat was 150. I am still measuring right on track, which is a great thing. 

It is becoming more obvious that I am pregnant, so I'm getting more & more people asking when I'm due, what I'm having, etc. I don't mind talking about Layla, but I've had time to process this & it always comes as a shock to people. 

One person I told on Sunday replied with, "What an honor.". Hmmmm. My gut reaction was, "Really? An honor to carry a baby that will not survive? That's daring to say." But, he explained. What an honor it is, that God would choose me to carry Layla. For some reason, He trusted me to carry her and love her no matter what is going on. He believed in me, that I would not end the pregnancy when given the option, that my family would be able to pull through this challenge and find the good in this situation. What a different way to think about this. 

Sticking her tongue out and making a silly face, another woman said, "Tell the Devil to bring it on. You will not bow, you will not break. Satan only tests men of faith." (James 1)

My last comment is a "Thank You". We had a rough weekend. At first I thought, I don't need to complain on the blog. Then, I decided to be real and tell you all that I was having a hard time. Thank you for your encouragement, saying it's okay to have a bad day, and for praying. One of my friends posted this on her 
blog. God gave me each of you to help carry my burdens and remain steady. Thank you! 

P.S. I'm super excited for this weekend. Matt & Crim are coming for our annual pumpkin patch trip!! 

Saturday, October 08, 2011

Please Be My Strength

Bryan posted a week or so ago. He said, "This is testing me and my faith to a measure that I didn't know existed. I am not sure how to feel right now. There will be a point where the feeling overflows, a point where I let it all out." I can't speak for him, but yesterday was rough. I think that when our car broke down, that was our tipping point. Bryan, Kylie and I were sitting on the curb with a car that was smoking. For about 2 minutes, I wasn't tough. I could only think of everything bad in our lives right now. I shed a few tears, and Kylie came on my lap & hugged me. She said, "It's okay, mom. It's okay." It was so sincere. I think God was using her for me. 

Most of you know, I'm usually pretty optimistic & positive. Today, I've been feeling sorry for myself. I don't feel sympathy for anyone else. I feel guilty about it. Not only that, but I've been more emotional. Well, I am pregnant, so I cry easily anyway!

I guess my point is that I can't stay like this. I wouldn't be able to make it if I stayed in this place of self-pity. Yet again, God came through for us with the car. I don't need to say who, but someone paid for it to get fixed. Just when we think we're stuck, God does His thing. 

So, right now, I'm calling on God to pull me out of this rut. It was my 24 hours of feeling sorry for myself. I have to pick my head up & move on :)

I'm looking for a place where I can plant my faith. One thing I know for sure, 
that I cannot create it. I cannot sustain it. It's your love that's keeping me. 

Please be my strength,
Please be my strength,
I don't have anymore. 
I don't have anymore. 

-"Please Be My Strength" by Gungor

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!