Throughout this journey with Juliet, you all have heard my thoughts, feelings, emotions…raw and true.  And through me you have heard a bit of Ryan’s heart….but he’s never got on and typed out all of his feelings.   So, I was a bit surprised when he told me that he wanted to talk at Jules’ funeral.  More so for the fact that I would never be able to get up in front of everyone and hold it together.  I’d probably have walked up and right back down.  But he knew that this was something he wanted to do, and I was so proud of him for it.

He told me one night he couldn’t sleep and ended up going down to the office and writing out his speech.  I was quite surprised because I didn’t even know he was gone…but even more surprised when he told me it was 8 pages long.  I said, the little notebook pages right honey? and he said no, the big printer paper pages.  Oh dear, that’s when I got a little nervous.  After much pleading I made him read it to me so he didn’t “make a fool” of himself.   Loving and supportive…..I know:)  Not that it should have been a huge surprise, but it was amazing. He did such a great job capturing his point of view on the whole journey, and even threw in his “Ryan” humor that attracted me to him as well.  I couldn’t have been prouder that day listening to Jules’ daddy speak at her celebration of life.  He is an amazing dad to all our babes, and I wanted to show him off to the rest of you….

So, after trying for hours to convert and cut and upload a video to youtube, our good friend Jeff saved the day and had it on there in a matter of minutes…thanks Jeff!

And thank you so much Larry for taping Jules’ funeral and Robert for editing, so we forever have the memories and can share it with everyone else.

When we went in for our 20 week ultrasound with Jules and found out that she may potentially have a cleft lip/palate, it was devastating.  It took us awhile to process it, and even though we knew it could be fixed, it was still hard to know that something was wrong with your baby.  Oh how there are days that I long that that was all it was.  It’s so funny how we went from hoping she didn’t have a cleft, to praying it was just a cleft, to praying maybe she just had Downs.  To finding out it indeed was trisomy 18.

With that being said, Jules was born with a cleft lip and palate as well.

 And although I noticed it at first….I can’t believe how soon after I barely realized it was there.  I mean..isn’t she perfect!:)

Her lips were just as kissable and her nose was just as cute:)  To me at least!

The reality of it all though, was that if the cleft was her only problem, we would have gotten it fixed.  We live in a country where medicine and technology is available to make it practically disappear.  Her lip would have been fixed around 2-3 months and her pallet around 12-18 months.  We wouldn’t have even had to think about not being able to fix it as an option.

The sad part is…a lot of parents do.  A lot of parents have to watch their children struggle to eat, talk, and even breath because of it.  They have to watch their kids get teased, become outcasts, and become extremely shy because they don’t have the money to fix it.  It’s hard for us to even fathom…but it’s their reality.

I”m sure you’ve been sucked into some of their hour long shows on a Saturday afternoon.  At least I have been.  And I would bawl my eyes out every time.  And I’m sure you probably know what I’m talking about now as well. Operation Smile

Operation smile is an organization that travels across borders and over seas to provide surgeries for kids with clefts who have parents who can’t afford it.   Within 45 minutes and $240 later a little persons life can be transformed.  Here’s a video that shows a little bit more…

So, in honor of  Jules we were able to give 4 kids their smile back:)  It makes me so happy to think about.  I so wish I could be there when they get to see in the mirror for the very first time and look at that beautiful smile!

Even though Jules was completely perfect in my eyes, I did wonder what she would have looked like with her new smile.  So since she got her new smile already, I’m sure she’s happy we’ve been able to pass hers on….

It’s been 1 month since I got to snuggle my little Ju Ju B.  One month since I got to feel her fuzzy head.  1 Month since I smothered her in kisses.  And 1 month since I’ve had to say goodbye.

The journey has been a crazy one to say the least, and this knew transition is no different.  There are moments when I feel as though this whole last 6 months have been a dream.  Almost like I have to force myself to look at pictures to remember it really did happen.  It’s quite surreal.  No nursery was set up for Jules, not many clothes were boughten.  She had one bottle, one nuk, and a few blankies.  After she died the clothes got washed and ready to return to those who borrowed them to us, the swing was put back in the shed along with her carseat.  The nuks and bottles were put away…and it’s almost as though she were never here.  All except for her blanket that I snuggle with and sleep with some nights, that still has a faint smell of her.

For the 38 days she was here, time stood still.  I barely left the house, the phone only rang a couple of times (people were so respectful)  and I held Miss Jules for 22 of the 24 hours in a day:)  I slept with her every night, I took baths with her, I ate with her in my lap.  She was my life.  And then I had to give her away.

That night I went to sleep without a bundle on my chest, I woke up late with no crying interfering my sleep. Schedules went back to the way they were before.  In a few days there were no signs a baby had been here, only the hole in our hearts.  The emptiness we felt.  and the memories we have.

Surreal.

That’s the only way I can describe it.

Boy how I miss you baby girl….Happy 1 month dancing little lady!

 After Jules’ funeral we let go 38 balloons for the 38 days she was here with us.

I was beyond excited to bring my little angel baby home from the hospital, and be able to spend time with her…..but with that being said I was also scared to death.  I was scared to become too attached, I was scared that I wouldn’t know what to do for her, I was scared to allow my mind to think maybe she might actually make it, but most of all I was scared to death of her dying in my arms.

I knew the reality of this was high, obviously the odds of a trisomy baby living are extremely low.  But even though I KNEW the odds, it didn’t make it any easier for me to wrap my brain around.  The fact that my baby would ultimately take her last breath in our house, hopefully with one of us holding her, that we would have to send her off never to see her again, this was just all more than I have ever had to experience.

I found myself reading a lot of blogs about trisomy families and their journeys.  I found some comfort in the fact that I’m not the only one to have to go through this and I decided to write this blog today for that very reason.  To hopefully help out some of those trisomy mommies or soon to be mommies that might have to face these same circumstances.  Death seemed so scary to me, even though I knew exactly where Jules was going once she died.  I have never seen anyone die before, so it was the unknown of what that looked like that was scary to me.

I talked with one of my friends mom who was able to be there for her sister-in-law as she lost her fight to Alzheimers, and I’ll never forget her words she said to me….they brought such comfort.  She said it’s so beautiful to be there as one of God’s children are ushered into his kingdom.  That visual brought such peace.

I must say, Juliet’s road the last few days of her life were not easy.  There were times I was frustrated with the Lord, I thought for all of the prayers that are going up for this little lady, could you please take away the pain? I had allowed myself to think that when the time came, Jules’ would pass away peacefully in her sleep, or just slowly stop breathing.  That was not the case for us.  I don’t say this to make it harder for those of you who may be facing this same journey, but to let you know that through it all we still found God to be so faithful.  Although not all the suffering was completely taken away, the Lord answered our deepest prayers.

From day one Ryan and I prayed that we would not have to make any decisions that would ultimately take Jules’ life.  We did not want to have to ever look back and say, “what if”  or regret a decision we had made.  That’s the hard part about this journey as well.  As your child’s advocate, and having a child deemed “incompatible with life” the doctors leave all of the decisions in your hands.  They will do as little or as much as you desire.  Then there are advocacy groups and parents messaging you telling you not to listen to the doctors, and do everything medically possible to make your child live as long as possible.  We were hit from all sides and the pressure was overwhelming.  So, Ryan and I decided to not join anygroups, and in turn, put our hearts desires at the throne of Jesus.  We prayed for guidance and wisdom in this area.  We prayed for peace in every decision….and he was faithful.

The Lord answered our prayer to spend time with Juliet at home, to get to create memories, and for her brother and sister to get to know her.  He even gave us most of that time with Juliet pain free, equipment free, and medicine free….a huge miracle considering the severity of her cleft and condition.  For awhile we all thought the Lord might allow us to keep her for quite some time.  It was hard to not let your mind go there.  To not think she was going to get to enjoy her first Christmas, and maybe we could see that first smile:)  But that was not in the Lords plan.

As the final days drew near, it was hard for us to watch.  It was hard to see her body fight so hard to stay alive, it was hard to see her come out of those apnea attacks.  We had to keep the oxygen on her 24 hours a day, and since her nose was affected from her cleft, we had to hold the tube of oxygen right by her mouth.  This meant that someone had to be up with her at all times to make sure she always had to oxygen.  We were so grateful for Ry’s mom and my mom that came to help out on the night shifts!  It was at this point when we started debating if we should take away the oxygen.  When you watch your baby in this condition, you find yourself saying to her, It’s okay little lady, you can let go now.  Your perfect body and life with no pain are waiting for you!  We’ll be okay baby girl…please stop fighting.  And she just kept going…

After phone calls to our pastor, a couple of doctors, and a nurse who works in the NICU, we found peace in the decision of taking the oxygen away.  At this point we felt like the oxygen was keeping her going, even though her body wanted to give up…and it was never our intention to keep her suffering longer than she had to.  We were told that if we give her some morphine, allow that to sit in her body for about 30 minutes, and then take the oxygen away, she would have no pain.  Even though we were at peace with the decision, it didn’t make it any easier.  We still did not want to be the ones to make the final call.  And in our darkest hour God met us, and He made that decision for us.  Jules’ had the morphine for about 15 minutes, and as we were snuggling her with the oxygen still on, she had a severe apnea spell….which happened to be her last.  Although it was hard to watch, although I will never forget what it felt like to hold my baby girl as she took her last breath, although I so badly missed her already….God was faithful!  He knew the desires of our heart.  He didn’t make us live with that for the rest of our lives.  And in this we say, GOD IS GOOD!

Daddy got quality snuggle time with Jule’s the morning before she died, when he took his shift.  She held onto his finger letting him know she was going to be okay, or so I like to think:)

Tate had bought this squirrel at a garage sale this past summer, and said he was going to give it to Jules’ if she got to come home.  These pictures were taken when the kids came up to tell Jules’ their final goodbyes….and he brought squirrely squirt as he named him,  just for her.  He thought she’d like that:)

Momma and her girls….or Jules’ and her two mommas:)  Kynlee took such good care of her as well!

This is the last picture we have of Jules.  A half an hour later she got to go meet Jesus….what a lucky girl.

And it was beautiful.  I held my baby girl while her soul got to run to Jesus…and I’m pretty sure he scooped her up in his arms and twirled with her:)  After Jules had died she looked so peaceful.  Her skin was like porcelain ..her face relaxed.  She wasn’t struggling to breath, her body was in no pain.  The sun was shining so bright that day, and as we walked with her downstairs the sunshine caught her eyes and they shone brilliant blue.  We took her down for the kids to see her after, so they could understand that our flesh is just a shell.  We were hoping to provide some closure for them, and so they could understand that our bodies are nothing without a soul. And although they saw her, I don’t think they truly understood because she looked so perfect… but I was thankful for that.

How lucky are we to know without a shadow of a doubt that we WILL see her again, how cool is that!  Now we just need to pray for patience….because man do I miss that little cutie:)

Hey sweet baby girl,

I can hardly believe that it’s already been 1 week since you left us, although some days it’s seems like a  lifetime ago that I got to hold you, kiss your sweet cheeks and feel your fuzzy hair.  I have never been more curious about heaven and what you are doing at this very moment.  I’m sure you are twirling and singing, just like your sister loves to do:)  Your daddy said it took awhile to get used to seeing me without you in my arms.  I’m so glad I was able to let the world stop, and just sit, stare at your beautiful face, and snuggle you.  What I wouldn’t give for one more day!

Love you baby girl!

Momma

This picture gets me to smile everytime!

Kisses!!

My friend Sarah, who took all of the amazing pictures we got with Juliet, put together a slideshow with her husband to play at Jules’ funeral.  They did such a great job with it that I wanted to share it with those of you who weren’t able to make it.

Hanging out in the hospital room for 12 hours payed off after we saw the raw emotion Sarah captured through her photos the day Juliet was born.  We first saw these pictures when the slideshow was put together and it brought us right back to that day.  A memory we will treasure forever!  Thanks so much Dan and Sarah!

To everyone that came to celebrate Jules’ life yesterday…thank you.  We were amazed by all of the love and support!  A big thank you also to Pastor Jeff, what a perfect sermon for little Jules’ and her story!  You did an amazing job.  Also thank you to Martin for the great worship….we truly could feel God’s presence.

We are going to celebrate sweet Jules’ life Sunday night from 4-7 with a visitation and her funeral Monday at 3, both at Cornerstone church in Litchfield.

I never thought I’d have to write an obituary for one of my kiddos, so today I had to google how to write an infant obituary.  Such fun stuff for this mom (sarcasm)  But, here’s our tribute to our little lady and more information for the coming days.  Thanks for the prayers!  It truly is amazing the peace the Lord has given us at this time….

Juliet Faith Lundeen, age 38 days, passed away peacefully November 14^th, 2012, at home in the loving arms of her parents after fighting hard of a genetic disorder, Edwards Syndrome.  Juliet, deemed “incompatible with life,” was a miracle and served a mighty purpose in her short life, spreading the love of Jesus and proving that every life matters.  “Before I formed you in the womb I knew you, before you were born I set you apart.”  Jeremiah 1:5

Juliet was the daughter of Ryan and Allison Lundeen (Dassel).

Juliet is survived by her big brother Tate (4) and big sister Kynlee (3), who loved her dearly.

Her paternal grandparents are Tim and Ronelle Lundeen of Cokato, and maternal grandparents are Tom and Sue Young of Mosinee, WI.

Juliet was preceded in death by her Uncle Eric Lundeen.

Jules won the hearts of all who knew her, and her life will be greatly missed.  There is such peace for her family in knowing she has been made perfect, free of pain, and dancing for her Jesus in heaven.  “The Lord gives, the Lord takes away, may the name of the Lord be praised.”  Job 1:21

A celebration of life will take place on Monday, November 19, 2012, 3pm at Cornerstone Church in Litchfield, MN.

Visitation will be held Sunday, November 18, 4-7pm and 1 hour prior to the service all at the church.

Cornerstone Church: Litchfield, MN 205 CSAH 34 Litchfield, MN 55355

Juliet Faith Lundeen earned her wings this afternoon and is dancing for Jesus.  Shes going to leave a big hole in our hearts but we are so grateful to share her and her story and watch her be used by Jesus.  Here’s to a perfect body little lady!

Thanks for all the prayers, we feel the cloud lifting us up.  We will share more information later.

We had the opportunity to tell Jules’ story to our local newspaper.  The story came out yesterday and to our surprise Jules made the front page!  They did such a good job with the story and just wanted to share it with you all, we are thankful how God is using such a little package in such a mighty way to touch so many lives!

Here’s the link to the story…..

Jules has been hanging in there all day.  Still on oxygen 24/7, and she has quite the bad cough.

 Lord, we place her in your hands.

The last 36 hours Juliet has started struggling.  She was doing so good for so long and then overnight we noticed a difference.  Her first set back.  This is the day I was dreading.

The week we brought Jules home she had a few apnea attacks at night.  She would stop breathing for a couple of minutes and then come back fighting hard.  Super hard for Mom and Dad to watch, and we said our goodbyes a few times during these.  A couple of days ago she started having more apnea episodes.  Our first real setback.  She also has had to be on oxygen 24/7.  The minute we take her off of it she starts to turn blue.  Something we haven’t had before.  It’s crazy how quick it can happen.  I was just writing my post on how she hasn’t needed any oxygen, and 24 hours later we are on oxygen non-stop.

I thought I had prepared myself for this moment.  I had come to terms with the outcome that this little lady would probably face.  But a mammas heart never changes, their maternal instinct is fierce.  I tried to even keep a bit of a guard up, to prepare my heart.  I had grieved her once already not thinking we would bring a baby home, and now to grieve her all over again is hard to accept.  During her attacks I want to tell her to just let go baby girl, your paradise is waiting…but I just can’t give up on her.  I try everything to keep her here with us.  Usually patting her back or kissing her head, which seems to help bring her out of them and start breathing again.  I have also learned about the human body.  It just keeps fighting.

I never thought I would have to witness one of my babies die in my arms.  That reality is coming a little too clear.  Jules has surprised us before and pulled through, and she may do it again..but it looks like her poor body is getting tired.  And her momma is getting tired. Tired of waiting for her baby to die.  Tired of watching her baby in pain.  Tired of not knowing the future.  Tired of the unknown.  This is where the true test of faith comes in.  This is where I choose to believe that God is in control, that He’s got this.  That I can hand it over to Him and that He will not only usher my baby into His loving arms, which is hard to believe but are even more amazing than her mommas, but also that he will not forsake me.  That he will carry me through this.  That He will use this for good and make us more in love with Him after this.

Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.  Isaiah 46:4

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  Romans 8:28

I serve a great God and he has used Jules in a mighty way.  What an honor to be her mom and be used by God to share her story.

What an honor that God chose us to be her parents.

About a week ago Ryan and I were laying in bed and he said, would you take any of this back?  Would you change it?  All of me wanted to scream YES!  I’d take a healthy baby that I could grow old with and keep with me forever.  But after thinking about it that just isn’t true.  I wouldn’t change it.  I wouldn’t want to miss the chance of loving on this little angel.  To see God’s hand working right before my eyes, using Jules to touch so many lives.  To experience the love of people that is so deep.  To experience the love of Jesus that has held our hand through every part of this journey.  To grow in our faith and knowledge of who God is.  No, I wouldn’t change it.

I always seem to end in prayer request, but I always see them answered, so I’ll put you to work again:)  Please pray for Jules to be comfortable.  And for strength and peace for mom and dad as we have some tough days ahead of us.  The unknown may be the hardest part.

I would love to post in a few days that jules is doing great and enjoying time with her family, or that she is dancing with Jesus in heaven with her perfect body.  Only God knows which it will be.

We’ve had many praises to celebrate this week, that we’d love to pass on to you, because I’m quite sure that many of them are happening because of the prayers of all of you!

We had a doctors appointment last week for Jules.  Nothing is really done at these appointments, but it allows us to ask questions and make sure we are doing everything okay.  Our first praise is that Juliet put on some weight!  It’s not much, and it will need to be quite a bit more in the future in order to keep her healthy, but it’s a step in the right direction.  She was born at 4lb. 11.8 oz. At her 1 week she was 4 lbs. 6 oz.  and at her four week she weighed in at 4 lbs. 9 oz.  So we still aren’t up to birth weight yet.  I have to chuckle anytime someone says she’s getting so big:)  Pictures are deceiving!

Another huge praise is how Jules is breathing.  When we took her in our doctor just looked at her in amazement.  She said she had just delivered a full term baby that needed to stay in the hospital for 6 days on oxygen, and then there’s Juliet, who was born with so many complications, and stayed in the hospital for 12 hours and went home without oxygen.  We’ve barely even been using any at home since we did receive it.  She also said she couldn’t explain how Jules is getting enough oxygen to her lungs because of her severe cleft pallet.  Her pallet on her right side is open almost to under her eye socket, leaving a large open area for all of the air to go.  In order for her to get enough oxygen to go down to her lungs is nothing short of a miracle….imagine that!

3rd huge praise for this week is two fold.  Jules has always loved to suck but because her nostril isn’t open on the left side we didn’t think she could do a nuk.  I decided to go online and order a preemie soothie and bottle just to see, and guess what….she loves them!

It’s amazing that even a preemie soothie looks huge!

She also started drinking from a bottle, which means no more syringes!!  That makes for one happy mama:)

She’s been drinking more since taking the bottle as well.  We are up to about 2 oz every few hours.

Still sporting the Einstein hair:)

So thank you for all of your prayers, it truly is a miracle that we’ve gotten over a month with Jules!

As well as praises we have some amazing blessings we’d love to share as well!

A friend from church let us borrow their fisher price rock n play for Jules and its amazing how much she loves it.  Now she at least starts the night in here and gives mom 1-2 hours of sleep before she gets lonely:)

Thanks Anne!

Also, we got a fun package from a lady my dad knows who has been following our story.  She sent 3 different slings to try along with some other goodies!!

Thanks Cindy!!

We also got a Moby wrap in the mail that I’ve been dying to try.  I love the moby because it works with preemies…..now I just need a tutorial on how to get it on:)

Thanks Audree!

Another fun package we got in the mail was from Erin, who wrote the Halo Sleep Sack company and told them our story.  They graciously donated 2 of their swaddle sleep sacks.  I have never used these before, but wow are they great.  Jules loves being swaddles, snug as a bug in a rug:)

and I just thought I’d show you how “close” sister stays:)  She’ll tell me, “mom, I’m gonna watch Jules.”  and literally, she does:)

even when she’s not happy:)

I was getting a little sick of the 4 outfits Jules had that fit her, but I haven’t been able to do much shopping lately, so what a huge blessing when a friend asked if I wanted to borrow her girls clothes she had from her twins.  We have officially stocked the dresser and moved Jules into her own space!

Thanks Aimee!! I’ve been having so much fun playing dress up:)

The last blessing that I’ll blog on was beyond generous and hard for this girl to accept, but Ryan’s good buddies and spouses all chipped in and spoiled us with this…

The laptop, not the fireplace:)  But now I can blog while sitting by the fire…or in bed…or wherever I want.  Amazing;)  Beyond sweet!  It’s also come in handy a few nights at 3 a.m. while I’m up with little miss:)   Thanks so much guys!

Although all of this “stuff” make life a little easier, the biggest blessing, and I’ll say it again and again, has been the prayers.  I’ve been having  hard time knowing how to pray or what to pray for.  It seems like I always start, “dear Jesus…..” and then my mind goes blank.  So to say that we are relying on your prayers and that they are getting us through is the complete truth, and they are a HUGE blessing!  We love you guys so much!

Happy 1 month birthday sweet baby girl!!

We Love you to pieces!!!

You are fearfully and wonderfully made!

and chosen just for us…

We couldn’t have asked for a more precious little angel….

You are a miracle!

lots of love…

Mommy and Daddy

A huge thank you to Sarah Pollio Photography for graciously taking pictures for us!! We love you Sarah:)