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!

A change in plans and new path to walk!

Where to begin... Here we go!

We just couldn't await the excitement of finding out what this precious bundle was going to be so we went for an elective ultrasound on August 6th to only find out we would be adding a lot of pink and bows to our home come January!!

On August 27th we went in for our 20 week ultrasound with our doctor. The following day we got our follow up call that everything looked good and she was healthy, but she was just to active (which was so true as it took 1.5 hours for that ultrasound!) that they did not get good shots of her spine and heart, being important parts he requested we go in for a follow up. Since there was nothing wrong he said no rush we can schedule it at our next apt in 4 weeks.

September 28th we go in for that updated scan. Bonus for us was we were now getting to see our sweet little girl for a third time! Our doctor was out of town that week so we would have to wait to hear results till he came back.

October 5th our world turned upside down as we were told half of her heart was smaller than the other and he was not sure what it was, nor what it meant, but that we would now need to go see a specialist. My heart broke at the sound of something being wrong with this bundle of joy I feel kick and move inside me daily, but the only thing we were able to do was pray, pray, and pray some more.

Fast forward to our apt exactly a week later (October 12th) we had an Echocardiograph done, where our new high risk doctor explained what we were dealing with. Which with some help to google I had read about the week we waited to see him so we had a little bit of an idea of what we were going to be getting into.

Miss P (as we call her until her name is relieved with her birth) or sissy as Wyatt calls her has Hypoplastic Left Heart Syndrome (HLHS) as of today we are waiting for our apt with a pediatric cardiologist to find out the extent and exactly what all comes with her specific case so I don't want to go into to much detail, but that give you all a general idea.They have no way of giving us a cause as there isn't one being that no one in our family has any type of this it just happened by chance. HLHS is more common in boys, as only 1/3 of the cases are found in girls.

 Here is a link that is great with information and helps break it down, this was my go to site before we saw our high risk doctor and while there he recommended we read it so I knew I had found the right place for information! www.cincinnatichildrens.org/health/h/hlhs/

As of today we don't know exactly what our future will hold, and we don't know exactly what our road will be paved with when she arrives in a few short months, but what we do know is god is already there and waiting knowing exactly what will happen and we have faith in that!

Many have asked what they can do and honestly there is nothing right now except pray! We believe god blessed us with this little girl for a reason and as hard as this will be and as confusing as it may be right now we are ready for him to lead us down this road. So as we travel it please keep Miss P mostly, but also the three of us in your prayers.
Verse for thought on our final paragraph Psalms 46:5 "If God is within her she will not fail"
I truly believe she is an amazing fighter and god will pull her and all of this through this battle and we will have an amazing finish line!

Here is where you can keep updated on all her information as we walk this new journey, we will have a Facebook page closer to her due date to follow along as well with updates and photos!

Thank you all for the support and kind words we have received so far.

If you are reading this down the road and just getting on your journey with HLHS you will be in our prayers and PLEASE feel free to contact us with any question or just with a name to put with that prayer as we have been in your shoes and know exactly how it feels right now! Stay Strong, Have Faith, and God Bless! :)

Until our next update <3 The Phelps!