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!.

Merry Christmas and a long overdue update!

We're a little behind on updates but with many doctors apt's, everyday life, birthday's, and the holiday's time sure got away from us!

We hope you all had a great Christmas! We certainly enjoyed ours as we are trying to enjoy our last little bit of time home together before our little Miss will make her appearance.

So.. Where to start!

We have many apt's a week lately to monitor this pretty girl. Some with good news and some could be better, but we are staying faithful and leaving this in gods hands.
A little over a month ago while at our routine weekly check ups with the OB I mentioned her movement had slowed down greatly (but I thought it was normal because she was running out of room in there.) Being that I was only 31 weeks it wasn't so they decided to have us do an NST (none stress test) to monitor her moving. She failed that, let's clarify what failing means for our heart warrior- She was moving a good enough amount for them but when she moved her heart rate wasn't rising as it should for a baby that was almost 32 weeks so they sent us to the hospital the following day to have a Bio Physical Ultrasound (they monitor heart rates, movement, fluid, and breathing) as well as to do a follow up NST. Her Bio came back 8/8 so we were good there, but her NST was the same, boarder line where is should be. Assuming she just may be a little behind and not following a normal chart they sent me home and set up another follow up NST a few days later at the office again. While there she again failed only this time it did matter because she was a ways behind where she should have been for now 32.5 weeks. My regular OB (not my specialist) decided to be safe we are now going to do weekly Bio Physical U/S and skip NST's unless we don't pass the U/S as it is most likely just her heart condition causing her to have her heart rates be where they should during movements. With that we have been having weekly U/S done and she passes each time! She has been stubborn and likes to make them difficult and come close to failing (as she has a list of things that need to done in a certain time) but she finishes up just in time.

Update on our last cardiologist visit- she didn't get the best news. Our very first apt there when we had the echo they mentioned her Atrial Septum was a little small but they were just going to watch it and it was nothing to worry about right then.
When we went back a few weeks ago that had changed. She has an almost fully restricted atrial septum now which gives her oxiginated blood so being restricted it will cause breathing problems after birth. That now means within a day if not the day of delivery she will need to have a cath procedure to open up that wall and help her make it to her first surgery where that wall will be completely taken out anyway. With that restricted septum, and underdeveloped left ventricle the blood doesn't have the opportunities to flow the way normal babies blood does through the heart so that is causing back up and pressure which has lead to heart being swollen. Again being swollen is normal in HLHS babies but it can still be dangerous if it swells to big and her's was getting to the point of possibly being to swollen so that is being monitored for now.
(Photo above shows where her RAS is. The two arrows point to the restriction and wall that will be taken out.)


So this is what our road has lead us to but we are again leaving it in gods hand's as he is the one in control of it all.
We will be able to have a good understanding of exactly how extensive her case is and what they will need to do and when after she is born and has an Echo done on her heart and see's her surgeons and cardiologists. 

Be sure to watch for our next update as it will most likely be announcing her arrival!! 

Continued prayers and again Merry Christmas and a Happy New Year to you all! :)

New Cardiologist and another new hospital!

For those wanting an update and following along, we met Little Miss Cardiologist today, we were misinformed two weeks ago and the surgeries she needs can not be done at Bronson so she will be delivered and cared for at U of M. Which is a relief as they are 6th in the country for HLHS we wanted to go there! We will be meeting with our new High Risk doctors and her surgeons within the next couple weeks to get things going. She is still healthy (as she can be for only having half a heart) doing good, and active as can be. Continued prayers as we get this rolling and meet the people that will care for her after birth. 

The Phelps! ❤️

CHD Remembrance Day 10.25

This is something that a little over a month ago I couldn't have even told you about, now it's extremely near and dear to our hearts as we have been strongly effected. 

Today is remembrance day for all those amazing heart warriors that lost their battle with such a heartbreaking defect, pray for their families more than you do every other day.

 It is a horrible thing that needs more than  today, it needs everyday. Every little baby diagnosed deserves to have awareness and have people fighting to help find a cure. No child, nor family should ever face what many families have faced while a loved one fights for their life and lives daily with a CHD. 

Light a candle, sponsor a CHD organization, educate yourself, but mostly pray for all those families that have lost someone, as well as those still fighting. Their battle may be done but their memories still live on, the love for them still exists, and families still have to move forward, so our prayers and thoughts won't stop after today. 

Raise awareness, find a cure, pray for all effected, and remember all the amazing heart warriors out there. ❤️

Remebering rainbows shine in storms.

Today, while scrolling through Facebook I came across an article (posted below) from a mom who's daughter was diagnosed two years ago with half a heart. The article goes into if she would go back to the day they got the diagnosis what she would tell herself. 

As I read through it I couldn't help but think all those things she was saying, and know exactly what she means. I still think and say how I wanna go back to the day before we got the call about her heart. When everything was normal, and perfect (to us) when she was healthy and not sick (we thought) and not looking at surgeries and fighting for her life. Back before I cried almost daily and when getting ready for her arrival wasn't so scary.

Just over a week ago we were in a hospital having another ultrasound and as the tech was taking the photos of our precious little girls heart I couldn't fight back the tears as they welled up in my eyes because I knew that little girl would be fighting for her life in just a few short months. As the tech moved onto to capturing her little hands and feet, then to her face and catching her little wiggles I smiled and reminded myself as hard as all of this is, she is still here, and we still have our little girl. That that face on the screen is our beautiful little girl and she is going to make it, she is going to be the fighter that pulls through this, she is going to take those kicks and punches I feel daily in my belly and one day use those while she kicks a ball in the yard with Wyatt, and use those hands to play with her toys and help me make cookies in the kitchen. As hard as it is to think of anything else right now except what we have been dealt we have to remember she is still our baby, she will just have a few bumps in the road we have to go over before we can get there! 

As hard as it is for me to process how I am going to be there for her in the hospital and still be there for Wyatt without loosing our time together the article reminded me it will work out and he is going to be okay too. He is going to understand and know he is just still just as loved as before.

She reminded me that as hard as these last few weeks have been adding not having support from people we thought we would have support from, (que Tracy Lawrence- Find out who your friends are) lets us know they aren't worth the time and that we have had and continue to have amazing support and have meet some new people that have helped us in ways we never thought we needed and we are so thankful for them!
I try to remind myself of these things but it's so easy to get lost in the bad, the research, the stories, so articles like these help bring you back to the good in this whole situation.

Most of all outside of the article I am reminded that god is in control and we just need to trust him and he will get us through. Going back to the day before our world changed isn't an option, but we're going to be okay and make it through, we are going to have many hard times to come, but those good times will out way the bad every time, every milestone will be that much more special, and more to celebrate.

http://themighty.com/2015/10/to-the-mom-who-just-f0und-out-her-baby-has-half-a-heart/

What in the world in Hypoplastic Left Heart Syndrome???

You've never heard of HLHS?! Don't worry a week ago Monday neither had we... To be honest the thought of a Congenital Heart Defect (CHD) had never crossed our minds either, as it isn't well known. What we have learned just over this past week & a half is amazing and been so informative and opened our eyes to a whole new world that needs more awareness. So lets break some of it down to help it make a little bit of sense!

There are many different types of HLHS but for now as I shared in my last blog we don't know the extent of hers so we will just leave it at HLHS!

Hypoplastic Left Heart Syndrome (HLHS) is a Congenital Heart Defect (CHD.) So down the road if you hear us share those abbreviations you'll have an understanding as to what we are talking about.

1 in every 100 babies will be born with a CHD- Breaking that down further every 1 and 4300 babies will be diagnosed with HLHS with only 1/3 of those being found in girls. When I first read that last Monday I balled, those odds and our little girl is that 1. But I remind my self that god blessed our little girl with being that 1 for whatever his reason may be, we are just going to have to trust in that.
 

 

Right now there is no cure for HLHS only treatments. Here are the 3 main surgeries that come along with HLHS. She will need her Norwood surgery done within the first few days of her life, until she has that surgery they will have her on a medication that will keep her ducts  from closing (which happens naturally on all babies after birth) until her surgery is done. She would then have her Glenn done at 3-6 months old. Followed by her Fontan between 2-3 years of age.

There are so many different types of CHD out there and we are just learning a little bit at a time on this one. But with learning we are trusting in god to help give her and us the strength to get through this, the surgeons, doctors, and nurses we will be working with to have the courage and knowledge to help make our baby better!




 So here is just an idea and gives you a look at some facts of HLHS and what she will be having done! Again we don't know her extent so we have no game plan right now, this is just general information on HLHS because as I stated before its not a very known condition. With that, one goal we will have along with helping our daughter fight this is bringing more awareness so those that will walk in the same shoes down the road may have more resources, help and information to get them through this difficult time.

If you're reading this down the road just learning the same things we are now, know you are not alone, and there are many that have been where you are right now! Reach out as we are all here for one another. We have meet some amazing people this past week that have given us hope and helped us start to work through some of these whirlwind of emotions we now have and we would love to help you do the same!