That gut wrenching pain....

You know the feeling you have when you loose someone? The feeling you can never shake, the feeling of wanting nothing more than to have them back and not being able to fully come to realization that their really gone? The gut wrenching hurt when you feel like it's still a dream and you're going to wake up and they'll still be here? 

That horrible repeat of a feeling, yeah that one. 

It's like none you have ever felt before, then add that you have that feeling because you lost a child and it's a thousand times worse because a piece of you was literally ripped away, and that piece will never come back. 

Sometimes you can't breath, your heart literally feels like it's breaking. You never look at anything nor feel the same way ever again. You wanna enjoy something, laugh, and smile. For a temporary moment you can but that painful reminder is always right behind that makes it hurt again. 

You wanna wake up or rewind and be back to when you still had them and it didn't hurt. 

But you know that can't happen, so you want answers, you wanna know why. Well that's another thing that can't happen. So you're stuck here trying to put pieces together, trying to make sense of anything and feel normal again. 

You try to find a connection anyway possible. Photos, videos, memories, clothes, clinching onto blankets that are loosing her smell but it is all I have left to remind me of her amazing baby girl smell that I can't stop. The smell I would give anything to smell on her again while I touching her soft skin and seeing her beautiful face. 

As I sit here constantly trying to bring anything back of her I can do nothing but wonder what she's doing up in heaven. What she feels, and sees. I wonder if she misses us as much as we miss her.

I wonder if she remembers how much Wyatt loves his sissy. I wish I could tell her and show her the love he has for her. I wish we could show her the pictures he draws for her, and she could be in the swing he asks if she can sit in all the time. 

I know she can't see us but I pray God lets her know all these things. When we say our goodnight prayer and give our hugs and kisses I pray God gives the ones we send up to her. 

So as we sit and wait for the day we can all reunite in heaven again with Jesus we will continue to hold onto our faith in gods reasons, the photos, memories and blankets until we can hold onto Paisley-Ann again. 

Until that day, I will carry on, trusting Christ and doing the best I can as a wife and mother to sissy's superman- Wyatt. 

Love our Paisley-Ann Faith forever and always 💗

One Day.... Someday.

11 days ago I wrote One Day... Hopefully Soon!  Little did I know as I sat at Paisley's bed writing that blog about our dreams of the day we would get to bring our beautiful girl home God had his own plan of bringing Paisley back to her home with him just a little over 24 hours later.

Though we were never able to bring our precious girl home she is still here, she is everywhere we go, she is in everything I do. I cannot physically carry the baby I grew for 9 months, delivered, fell in love with and watched fight for 12 days but I carry her with me everywhere.
We did not get to see our picture perfect ride home as a family, I won't get to see my babies playing together on the floor and growing up together.
Last week I put my little girl in her going home outfit for a different kind of ride home. I put the perfect bow on her head that matched her perfect outfit and blanket. But what I did not do was strap her into her car seat and head down I94 with my newly grown little family. No, not that. Instead I left the body of my baby with the arms of a nurse. I packed our things, and came home what felt empty handed. I walked into a house we spent months preparing to add a little girl to, and saw pink clothes, blankets, swings, and beds everywhere just waiting for her to use. I watched my son look around a his home that felt so strange because he had been gone for a couple weeks. I explained more than one time that sissy couldn't come home because sissy is now with Jesus and I watched the wheels turn in his head as he continued to try to understand and in some ways still does today. I went to town and picked out the perfect dress, not for Easter Sunday like I had imagined, not the white dress for her wedding, no not a formal prom dress.... None of those. I picked out the dress I would lay my newborn baby to rest in. The dress her body would forever wear because I wouldn't be able to dress my girl again.

So where does this leave the Phelps family? Where are we after loosing our girl just 10 short days ago....
We are taking one day at a time. We are waking up and taking it hour by hour. We are still trying to understand and make sense of something that still doesn't seem like it can be real. I am trying to work through the emotions of all these things, trying to figure out when I am ready to pack her things away. I know she she will never use them but I am also not ready to face them in boxes knowing she won't use them. Not ready to pack away things I spent endless hours cleaning, washing, sorting, and putting together.
I know my baby is never coming back but I am far from ready to face that 100%, I am not ready to put these things into boxes and never see my girl in them..

They say everyone grieves differently but I believe the grief of loosing a child never goes away especially for a mother. She will forever be here, the pain will never go away.

Please stay with us and keep us all in your prayers as we try to handle all these emotions and try to start again as we no so longer have our beautiful and precious Paisley-Ann Faith <3.

One Week... And a lifetime away.

A week ago tonight I heard the words "Paisley-Ann doesn't have a heart beat and we are doing CPR" those words then lead to "We tried all that we could but her heart was just to weak." 

These are the same words that came from doctors I had just talked to earlier that day that told me she was doing good and there was no change since her last echo and surgery. The same voices that told me her lab results all day were the best they had ever been. 

So how in just a matter of hours do I go from hearing she's good, to hearing she's gone.... That's something I believe I will never understand nor will ever know. 

The only thing I know is Paisley-Ann completed her job on this earth and it was time to go home. 

"For I know that you can do everything and that no purpose of yours can be withheld from you" Job 42:1-2

Tonight as I went to visit my daughter it wasn't 10 floors up, behind closed doors, in a hospital bed. It wasn't in a funeral home laying a purple bassinet, no it wasn't any of those things. It was in the ground on a peaceful piece of land, in the country, smack dab in between where Steve and I both grew up.  

Her body has a beautiful view everyday, she is forever at peace and safe. 

But how in one week do I go from spending the afternoon rocking her in a chair to driving out to somewhere that seems so strange to tell her how much she's still loved and always will be, to spend the afternoon ordering a birth and death certificate at the same time. 

No mother should ever do those things let alone in the same day. So why am I doing them? Why does everything still feel so strange and in a way like a dream I haven't woken up from. 

The closest thing I can come to to give my why an answer was Paisey-Ann competed everything she needed. She worked and fought so hard in 12 days she didn't need to work anymore. She was so perfect and special God was ready to have her back, she had done all she needed to do down here. 

"But blessed is the one who trusts in the lord who's confidence is in him" Jeremiah 17:7

I read some things today and one hit home 

"I carried you every second of your life, and I'll love you every second of mine." 

Though gone physically Paisley-Ann will NEVER be gone. She is in everything I do, everywhere I go, everything I see, and that will never change. She will forever be woven into me and here until the glorious day I see my makers face and meet with my baby girl again. 

I may not be able to look to my side, or across the bed at night to tell her how much I love her, but I know she knows, and I know God reminds her and will keep until I can pick back up again. 

Though I still don't understand and I never will I'm trusting in gods plan and believing he has such a glorious reason for making us go through this and for taking my baby from me far before I ever thought she would be taken. 

He has his reasons and they are good. I am relying on him to pull me through, to give me the strength to wake up and start each new day, and to make it through.  Because each new day is one day closer to the day I'll see her. 

"Rest in the lord and wait patiently for him" Psalms 37:7

One week down is one week closer to seeing you again. Loved forever baby girl 💗

Tears of joy- 1.21.16

My baby girl. Paisley-Ann Faith Phelps.....

From the time I was a little girl I always dreamed of being a wife and mother. God has blessed me with both of those amazing things, and they're just as great as I had ever dreamed they would be. I was blessed with my first son in November 2013 and it was one of the best moments of my life. Very few things compare to the bond a mother and her little boy share.

  August 2015 we received the amazing news we were expecting a little girl and my heart was so full and my dreams began of all the things we would do together, and everything I could teach my princess! (because with a house that has a husband, son, and two male dogs I was beyond ready to share some pink!)

As most of you all know by now we lost our beautiful Paisley-Ann suddenly to her battle with HLHS Monday (1/18/16) Well that.... Was not something I had dreamed, nor ever thought would happen.

 In all 24 years of my life I have never watched anyone fighter harder than I watched my daughter fight in her 12 days of life, but she did so with such sass and attitude you couldn't help but smile and laugh.

"She is clothed with strength and dignity and laughs without fear of the future." Proverbs 31:25

 This was her scripture from the very beginning in my womb.
Paisley-Ann defied everything the doctors said about her from the beginning. Though I still can't believe my baby is gone and it still doesn't feel real, I know exactly where she is at. I know she is completely pain free, she is running and playing in heaven. She hears angels singing and no longer listening to beeps of machines anymore. Though I will no longer hold, touch, smell or see her on earth I will again one day and that glorious day will be amazing. As much as I want my baby girl back I can't help but smile and cry tears of joy. Not only for the fact that she is in heaven and never has to face the ugliness of this cruel world but she will never hurt again, she will never again have someone poke her with needles, or cut into her chest. She is free and whole again. Though my selfish side want's her back I am so thankful she wont experience those things anymore. I know she is in heaven with my Grandpa and he is showing her all the cow pastures they have and taking good care of her until we can get up there and do that.

No parent ever wants to see their child go through or experience what Paisley-Ann went through. HLHS is such horrible and ugly disease.

People ask me how I am doing, and honestly I am horrible and joyous at the same time. I pray for anyone who ever walks the road we have walked with Paisley-Ann and we have prayed many times and will continue to pray over 10w-40 and any other family who ever makes that their temporary home that they will find comfort in Christ and his plan because thats the only plan that ever matters.

The doctors had plans for Paisley-Ann and lord knows all the plans and dreams we had to do with her but that wasn't the plan god had for Paisley-Ann. In just 12 days she completed her work on this earth and he called her home for her reward. Though I have no clue what that plan was or why he made my precious girl go through it all and I may never know I find comfort knowing she completed her job on this earth is enjoying her reward in heaven with our great god. and one day, we will join her there.

So when we think of Paisley-Ann don't dwell on the sad, and the things she will never get to do but instead think of all the things she gets now, and that she see's, because that is what is honestly what is amazing and what we are here for is to complete God's plan for us and go to our forever plan.

Paisley-Ann will be carried with us wherever we go for the rest of our lives and we will have our horrible days, but remembering the joyous times and where she is will help to pull us through until that day.

One day... Hopefully soon!

Because whenever anyone brings a new little baby into the world they picture the same thing. The day they get to bring that new bundle of joy home, the day they can show them their nursery, introduce them to siblings and start a new "normal" routine. 

You pick out the perfect going home outfit, carefully pack that precious cargo in your car and head for home, leaving behind the place that days before helped you bring that little one into the world.
 For some that is the amazing and blessed reality that plays after the birth of a child.

For others such as us we have a temporary new routine at play that we would have never imagined nor would ever wish upon anyone.

 We live out of a hotel, what we call our home right now to try and help our 2 year old understand when he asks why we can't go home. We sleep in strange beds, travel back and forth between that temporary home and a hospital trying to spend as much time with each child as possible, trying to make anything seem normal, comfortable, and as stable as we can when coming from a place where we had the same routine, the same familiarity and knowing we had just a few short weeks ago when we left home.  

Never would I have dreamed in my wildest dreams that one day I would be having to check in with a security officer to see my daughter, would I spend hours a day in a hospital chair listening to multiple different machines beep, hum, and see them flashing. Would in 11 days of her life have only held her for a few hours total and for that to even have happened I would need 3-4 people to help me just get her into my arms. 

Never would I have thought that at just 8 days old I would see my precious baby being taken back behind closed doors to have her chest cut open and for someone to touch her heart.

 Never can anything help prepare you on how you will explain to your toddler that sissy's heart was being opened so they can fix the owie on her heart. 

Never can anything help you explain to the little boy that has waited 9 months and practiced so much on how to hold sissy be told that he cant hold her and we just have to look and be gentle. The look when he asks for sissy to "come on" or to "come play", the confusion and scared look in his eyes when he see's his "baby sister" with wires everywhere and a tube coming out of her mouth.  

It doesn't matter what you do, what you read, who you talk to or what you see. Nothing can have you ready, get you prepared, or help you understand any of those things until you experience them first hand for yourself.

So where does this lead us?

 It leads us to the fact that we pray and wish upon the saying "one day."
One day we wont be in this place, in this situation. One day we will all play barn, and watch frozen on our couch the 4 of us. One day Wyatt can hold his sissy as much as his little heart desires. One day I wont need to ask to hold my daughter nor need help to make that task possible. One day we wont be hours from home, sleeping in strange beds, have a strange routine, we won't have to leave one child to spend time with the other. One day I will look at my beautiful girl without seeing wires, tubes, and monitors. One day this will be in the past and that will be us, in her perfect going home outfit traveling home as a family. One day everything will be our normal again and we wont walk from a parking garage and take an elevator up through security checks and get permission from guards that know our faces and the bed we're going to see before we say a word.  One day I won't hear my toddler cry as I leave to go see his sister and I won't cry as I leave my baby in the hands of nurses to go see her brother. 

One day our view won't look like this. 

One day this dream will become our reality, and one day can't come soon enough. <3

Day 9- First Heart Surgery!

Keep Paisley-Ann in your prayers today as she is getting ready to undergo her first heart surgery. 

She had a great night and is ready to go down with her spunky little attitude to fight this and start on her road to going home! She was awake this morning and reassured us it's going to be ok and she's ready! 

Thank you all and we will update you when she is out! 💗 

#PrayersforPaisleyAnn

2- Paisley-Ann is out of surgery and it went great. Everything they wanted to accomplish was accomplished. She is in recovery and we're waiting to see her. It's now just a take it easy and wait until her echo next week to see where we go next. 

Thank you all 💗 

#PrayersforPaisleyAnn

Day 8!

1- Prayer warriors pray hard please Paisley was just taken back for an emergency procedure as her Echo this morning didn't give good results. We will update more when we can thank you.

2- Paisley-Ann is back in her bay and recovering. The procedure was unsuccessful as the wall they needed to get through was to thick and the surrounding walls were to thin. They will now just wait and attempt it tomorrow during her pre scheduled surgery when they have her chest open and can hopefully have better access.

Day 7!

Day 7! 

Paisley-Ann had a good day. Her ventilator stats were up and down today but that's normal with trying to wean her off so they just fluctuated them as needed. She X-Ray came back good and her lungs are still pretty clear. 

It's hard to believe a week ago tonight we were in the hospital waiting for her arrival, doesn't seem possible, time goes way to fast. Thank you all for the continued prayers! 💗 

#PrayersforPaisleyAnn

Day 6!

Day 6! 

Paisley-Ann had a good day and did good with the settings lowered on her ventilator. The plan right now is to keep trying to lower it little by little. She got to "play" dinosaurs with her big brother for a little bit tonight too! 💗

#PrayersforPaisleyAnn

Day 5!

Day 5! 

Paisley-Ann is doing great! Her morning X-ray showed that her right lung was almost completely open minus a little bit on the very top. She had a good restful day and enjoyed reading princess stories with mommy during cuddle time. We added more of the decorations that we brought from home to her room today to help make it more of her own until she can get home to her room!  💗

Thank you all for the continued prayers and support it is greatly appreciated!! 

#PrayersforPaisleyAnn

Newborn photoshoot!

Paisley-Ann had her first photoshoot yesterday!!! Not exactly the newborn photos I had in mind but she is gorgeous either way! <3

#PrayersforPaisleyAnn #Heartwarrior

Follow her FB page for faster updates! 

www.facebook.com/PrayersforPaisleyAnn 

Day 4!!

Day 4!! 

Paisley-Ann had a GREAT day!!! 

Her morning labs were text book perfect and stayed steady all day. They were getting great chunks of junk (secretions) out of her lungs which will help that right lung open back up and while they were trying to get them out she was coughing which is not only helpful but good! 

We got a lot of open eye contact and mommy and daddy both got over 2 hours of cuddle time! 

God is great and prayers are powerful so thank you all for the continued prayers and they're so appreciated! 

When your praying for Paisley please remember to say a prayer for all those other babies and families there as well as they can all use them too. Paisley is in a bay with multiple babies who all have some sort of heart condition if not HLHS, as well as on a floor with lots of heart infants, babies, and kids who all need all the prayers they can get!! 

Thank you all again 

#prayersforPaisleyAnn

It's the little things in life that you never realized how special they were and took for granted that you would do anything to be able to do. 

Never in my life did I think I would need 2 nurses, 1 respiratory therapist and the opposite parents help just to hold our precious girl. As special and cherished these times are they make me that much more excited for the day we can hold her whenever, wherever and how ever we want!

We can already see a difference and her eyes aren't as swollen. She woke up for us this morning and told us lots of different stories!! Truly amazing ❤️

Thank you all! 

#PrayersforPaisleyAnn 

A little behind!

If you follow along you can see I am a tad behind updating the blog and just caught up! 

It has been a crazy few days. 

Paisleys Facebook page is up and running and we will be updating both places for those following along! As you can imagine it's a hectic time a difficult to get back with each person who has contacted us but we would like you all to know how thankful we are for the support, thoughts, and gestures they are greatly appreciated!!

Here is her FB page link and hashtag for social media follow alongs!! 

#PrayersforPaisleyAnn

www.facebook.com/PrayersforPaisleyAnn

We have amazing family and friends that have started support pages and those are below! 

https://dm2.gofund.me/93j4x4tw

If you're interested in a shirt that is below! 

www.booster.com/prayersforpaisley-heartwarrior

Day 3!!

I'm Day 3 Update! 

Paisley had a great night and her stats stayed good. Her morning X-Ray showed secretions on her right lung so they were thumping that today to help break them up and we will know tomorrow morning how that is doing! 

She had her second Echo today and it sadly came back the same as her first. The ventilator is helping her from working so hard on her own but it didn't help make a change in her Tricuspid Valve (the leaky valve that is not sealing off and causing a back flow.) 

With that it now means she is NOT a candidate for the originally planned Norwood surgery that we were hoping would happen the beginning of next week. That now means she will be having a Hybrid operation instead. The hybrid (Photo Below) is a non reconstructive surgery that will help her heart to function on its own but without being so invasive as the Norwood. Her body just is not strong enough to handle the Norwood right now so they want to give her time so grow and get stronger before they get to that bridge. The Norwood will now be moved to later and be combined with the second originally planned Glenn surgery. 

Her Hyrbrid will not be until the middle of next week sometime as the surgeon that handles those is out of town at the beginning. 

Good news that came along with today!! 

Mommy got to enjoy 2.5 hours of cuddle time (with a nap in there for a very tired momma) and daddy got a little over an hour later in the evening! Those are much needed times and truly treasured! 

Another-

Her little eye's are swollen and it is hard for her to open them (we were actually told she probably wont be able to open them till after surgery when the swelling goes down.) So to tell when she is awake we just watch for facial movements, eye lids moving and such since we cant hear her cry either. Well tonight about 20 minutes after being told she cant open them, while rubbing her feet and talking to her she woke up and was raising her eye brows, she then got one eye lid open and was following me! That was truly amazing. Tonight after the shift change we were talking to her again and she was upset with them doing their workup she go BOTH eye's open for about a minute. That was so nice to see as she hasn't had them open since delivery. She truly is a little fighter and sets her own path! 

So if we can get prayers as plans are made for her surgery next week, and guidance for them. Prayers for Wyatt as he is having a hard time understanding and seeing his sissy this way when all he wants to do is "cuddle her" and continued prayers for all the amazing doctors, nurses and everyone on her team that is caring for our precious girl. 

Thank you all again for your support, and prayers! 

#PrayersforPaisleyAnn

Day 2!

Day 2! 

I was able to get some much needed cuddle time in with my pretty little girl tonight! 

As hard as it was seeing her on a ventilator this morning watching her progress all day, seeing her relaxed and doing good helped remind me how needed it is! She did great all day and we're praying for the same tonight. 

Prayers tomorrow for better Echo results and good news along with those! ❤️ 

#PrayersforPaisleyAnn

SHE ARRIVED!

Paisley-Ann Faith Phelps was born 1.6.16 at 5:19 AM weighing 5lb 15 oz. 

Mommy got to hold her and we enjoyed taking in all her new features and presence for about 5 minutes before she was taken to start her stabilization procedures. 

We finally got to go see our beautiful girl again a few hours later when she was done and moved to her "room" When we got there she was doing good and was stable. By mid afternoon when we were able to go back (She is in a bay with other babies and if one has an emergency they shut the bay down and ask everyone to step out so they can tend to that baby and keep it as private and sterile as possible so we had to leave not long after getting to her in the morning) she had gotten some lower labs so they were working on fixing those. 

Those who have followed our blog during pregnancy heard about her Restricted Atrial Septum that needed to be fixed by cath procedure within 24 hours of delivery has thankfully opened enough and she will not be needing that. But as you also read her tricuspid valve doesn't seal all the way and they were concerned it could only get worse and it has. We're not going into a ton of details other than that right now as there is no set plan on what will happen right now. They're trying to help her with that in other ways and we will update when for sure information is set. 

For those who don't know Paisley she was diagnosed with HypoPlastic Left Heart Syndrome (HLHS.) To make it easy she has half a heart, as the left side of her heart is severally underdeveloped. She will undergo a minimum of 3 open heart surgeries by the time she is 2.  

Feel free to follow her progress here or on our blog and as always please keep Paisley and our family in your prayers as we walk down this road!.