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Our Journey with Conjoined Twins
Abby & Erin

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

Step 1

10/27/2016

10 Comments

 


Sorry I haven't updates as of late, it's been quite busy to say the least.  I have already sat down three different times to write this so if it is a little choppy thats why. 

The girls had their first surgery on Tuesday and everything went very well.  The girls are definitely leaning on all the prayers that have been said on their behalf.  Abby is seeming to be a little bit behind her sister, but is still doing well despite the circumstances.  

Also just to clarify, the girls are still conjoined.  This was not their "actual" separation surgery.  It just started the process that will be finished hopefully in a few months.  

These past few days have really tested me.  You really never know what you can handle until it is placed in your lap.  I know I have written it before but I had tried to prepare for the day of surgery as best I could, but nothing can prepare you for that last kiss you give them before they are wheeled down the hall to the OR.  Knowing you are leaving your children (child) in the hands of some people you only met a few months ago is a daunting thought, but at the same time you know that you have no choice but to hand them over.  

Then you wait.  You wait, and wait, and wait, and pray for an update more than just everything is going well.  Not knowing exactly what is going on is frustrating.  If I could sit outside the OR and listen to everything I probably would.  I think the people that had the best job was the film crew.  They got to watch everything that was happening without having to be one of the dr.s or nurses.  

Once the surgery was over we met with the surgeons so we were able to go over how everything went.  That was went we finally got that wave of relief.  Knowing that everything went well and was over was such a relief.  

The thing that most people haven't realized is that it isn't the surgery and the waiting that is the worst part.  It is the part that we are in now.  The part where I have to watch my girls coming out of being sedated and them being in pain.  The part where they start to open up their eyes and they give the look of "why mom".  Where there is someone poking and prodding them 98% of the day.  It is so overwhelming and exhausting sometimes.  I wish I could take it away from them.  Being so swollen, and the silence from them being intubated is almost too much to bear.  

Just 3 short days ago they were babbling and almost smiling (they haven't got the smiling thing down yet, they're still too young).  They were happy and excited to learn about the world.  Now that hold their breath when they are upset or in pain and all their stats drop.  They've got so many pain meds that they barely wake up during the day.  I know I was trying to prepare for the new normal, but the new normal is so hard, and so exhausting.  

Today (now the 28th) has been another long exhausting day.  The girls were extubated this morning and have been doing well.  I was nervous just because you never know with these things but they did great.  Their little voices are so sad sounding it just breaks my heart every time they make any noise.  But they are troopers and are getting there. 

The scariest thing I am worried about right now is Erin having seizures.  She had one this afternoon that I witnessed and it is pretty much terrifying.  To have no control over what is happening with your child is completely debilitating.  My knees went weak and I almost couldn't breathe for the minute that it lasted, just praying that she would come out of it.  She eventually did come out of it and they are now monitoring her very very closely.  

This whole thing is nothing I could have ever expected.  Today I am feeling exhausted and weak, but I know I need to hold it together for our girls.  They need their mom (and dad) and I (we) need to be there for them.  Please pray for us and we are in uncharted territory.  I have so much to say and write but no energy to do so tonight.  We are tired, we are fighting, and we are hanging in there.  Pray for the whole situation and everyone involved.  We are praying that our girls come out of this as the little perfect miracles we already know they are.  

“Do not be afraid, for I have ransomed you.
    I have called you by name; you are mine.
 When you go through deep waters,
    I will be with you.
When you go through rivers of difficulty,
    you will not drown.
When you walk through the fire of oppression,
    you will not be burned up;
    the flames will not consume you.
For I am the Lord, your God,
    the Holy One of Israel, your Savior.
​Isaiah 43:2-3


There is still and plan, and there is still a purpose, we need to remember that!  God knows....

10 Comments

The new "normal"

10/23/2016

14 Comments

 
Today was the last "normal" day we will have with the girls for quite some time.  By "normal" I mean that they aren't sedated, in pain, or have all sorts of lines and tubes coming off of them.  It is such a harsh reality of the gravity of our situation. 

From the beginning I have been preparing myself for these procedures.  The ones where our girls would be having life changing but also life threatening surgeries.  I knew they were coming and I have tried my very very hardest to be ready for them, but I honestly believe that there is nothing I can really do to prepare.  Now that tomorrow starts the whole "pre-op" process I can't even describe how I feel.  

When we heard all the risks and such when I was pregnant I understood them.  I knew that there would be risks.  But now I look at our incredibly sweet little girls and think that there is no way I could go on without them in my life.  Moving forward with separating them means putting them in so much risk that it breaks my heart to make these decisions.  It's decisions I would never ever wish on another person.  To watch your healthy little children undergo incredible surgeries and procedures literally takes your heart out of your chest.  

Tomorrow the girls will go to get their different lines places.  Since the one type of line they need to get isn't quite large enough to push blood products (if God forbid is necessary) they will also be getting another more temporary but bigger line.  Since these lines are quite invasive they will be intubated and put under general anesthesia for them.  Since surgery is the next day they have decided it is in the girls' best interest to just stay intubated until surgery the next morning. 

It is so hard knowing that tomorrow morning will be the last time I hear their little voices for some time. It will be the last time I see them bright eyed and happy until they are well on their way to healing/being separated.  Since the way our girls are being separated has never been done before we are all slightly unsure of how it will go.  We are not sure if the next few months are going to be painful for them or if they will just be "uncomfortable".  We don't know if they will need to stay intubated for a day after surgery or for a few weeks.  Everything is still unknown, and that isn't easy. 

From the beginning everything with our girls has been "unknown".  From figuring out how they were conjoined, if they could be separated, did they share brain matter, when would they be born, would they survive....there were so many unknowns and now we are right back in that place.  Yes, there is a plan in place and a way that the Dr.s believe things should go, but there is no guarantee.  

Today, even though it was normal and relaxed, was one of the hardest.  The reality of all that is about to happen is starting to set in.  Tomorrow will begin the "new normal" for the next few months.  Please pray that the procedures will go well, that the girls will tolerate the anesthesia as well as they did last time, that the girls are easy to get IVs into, that all the lines will be placed easily, that the girls will be comfortable even though they will be intubated for 24 hours without really "needing" to be, for the surgeons, doctors, and nurses as they all prepare for this week, and for Riley and I and our families as we embark on the hardest part of this journey yet.  The part where our girls are on the road to separation.  

Our girls are already such miracles!  And we know that God has all of this already planned out and has his hand on every single procedure, and every single person who will come in contact with Abby and Erin. He knows what is about to happen, and that gives me peace.  His will be done in our girls' lives!  

By the way the girls are just shy of 8lbs now!!  It's so crazy how much they've grown in the last few weeks!  They have gone from 2lbs when they were born to now almost 8.  It is truly amazing to watch them grow :)

Below are some pictures of the last few days of just enjoying our sweet little girls!  Gosh we love them so much!  You never fully understand a parent's love for their child until you have one (or two) of your own! 
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Chunky Monkeys
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Halloween Outfits a few days early (we don't know how they'll be on the actual day)
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Loving the camera!
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Mommy and Abby time while Erin sleeps
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Being mesmerized by the ukulele and Daddy of course!
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One week

10/17/2016

0 Comments

 
Well, it is official.  The girls will be having their first surgery on the 25th which is in 1 week.  This surgery won't "fully" separate the girls, but it will begin the process.  Their next surgery will be the one that does that (God willing).  

The main question everyone keeps asking me is "how are you doing?" And to be 100% honest that is an incredibly loaded question.  If I were to tell you everything I was feeling about what is about to happen I could go on for hours.  It is the most terrifying and yet exciting thing.  It is also incredibly bittersweet because there is such risk involved.  The thought of my girls going into the OR and the possibility of only one or none coming out is completely and totally terrifying.  What they are about to do is not little.  It is something that as adults we most likely would not be able to handle it.  Physically our bodies would not be able to handle it.  But these little ones are so incredibly resilient.  

The one thing I can tell you is that I am feeling humbled.  Yes, it is scary but it is also amazing.  I am so humbled that God has chosen my husband and I to be parents to these two sweet girls.  They are little miracles.  And as this journey continues I believe that they will be a testament to the miracle working power of God.  I believe wholeheartedly that He is going to use these surgeons to do something miraculous.  Something that has never been done before, and that my little girls will be living miracles.  And I am completely humbled by the fact that I get to love them, and be part of their journey.  It is not an easy journey, but God, in all His wisdom, knew that these girls would be up for the challenge.  

Please keep us in prayer as we go into the next 7 days.  We will be getting lots of information and speaking with lots of people.  We need to make the right decisions and also enjoy every minute we can with our girls since things will be different after surgery.  We have a simulation surgery, meetings, interviews, and procedures to get through before the 25th.  It's a lot but we know that God is in the midst orchestrating every move.  And we have peace in that knowledge.  So please pray that our minds will keep that peace and we will go into all of this confident that "He who began a good work, will be faithful to complete it".  I will be updating on the girls as things progress so please stay tuned!  We are so grateful for each and every one of you who has prayed for, supported, and encouraged us through this time.  We aren't even halfway there yet, but things are moving forward!  We feel like we have a huge extended family showing our little girls so much love!  


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Tears

10/8/2016

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*this is most likely going to be a very "real" post as I am feeling very broken and worn down*

Tears are a strange thing.  I've been thinking about this lately.  You cry when your sad, and when you're happy.  You can cry when you're scared, you can cry when you're overwhelmed, and you can cry when you're relieved.  It is amazing how many meanings your tears can have.  And I feel like in this past week my tears have expressed every emotion possible.....

People ask me how I am doing literally ALL THE TIME.  And pretty much all of the time I say "I'm doing okay", or "well", or "good" etc.  Very rarely will I tell someone that I'm not okay, because I don't want to seem like a burden or a downer.  But I am starting to feel like I am not able to do that anymore.  Today was a day that broke me.  I have been strong through a really long and exhausting week.  We had family visit last weekend and ended up having some personal issues that were really emotional and exhausting.  And then two days later the girls had their MRI which was so scary since they were being intubated for the first time and going under anesthesia.  And then today was a circus.  

I am not going to go into detail about some of the personal issues going on right now.  Just know that this situation affects so many people in our family.  It's hard on me being here alone, it's hard on Riley being home and away from us, it's hard on Riley's and my parents because they are watching their children go through hardships in which they can't change, and the ripple effect goes on and on.  But please pray for our family as we are struggling with all of this.  Everything is becoming so much more real about how big this is and how stressful it is.  And some how life HAS to move on.  Bills still need to be paid, insurance needs to be figured out, work needs to be done, laundry has to get done,  and bathrooms need to be cleaned.  Riley and I wish that we could just stop everything going on around us to just sit and be with our girls, but we can't life has to go on and it sucks,  I am sorry for the bluntness but it just Sucks.  We know that we will get through it and we know that God has a plan, but in this trying time it just sucks and there is no way of sugar coating it.  But just know there were a lot of tears shed this past weekend from multiple people about what is going on and they were tears of pain, frustration, confusion, sadness, being scared, and so many more.  

Then on Wednesday the girls had their MRI and CT scans.  Now let me tell you.  Watching your children be wheeled off knowing they are heading to the OR is such a scary feeling.  Even though they were just going to be put under anesthesia and be intubated.  It was scary.  I wanted so badly to kick and scream and cry and hold the girls back and never let anything scary happen to them, but you can't, you have to let them go and trust that the people caring for them are doing everything they can to help them.  But that doesn't make it any easier.  As I sat in the surgical waiting room I realized that this is where I will be waiting when the girls have their actual surgeries....and that scared me literally to my core.  Even as I am writing this the tears are flowing because of how scared I am to let them go through this.  I know it will be better in the long run, but right now they are like normal little babies who are just attached.  I know I am going to be putting them through on of the very hardest things they will have to go through in their little lives and they will be only 3 months old.  Ugh it hurts me more than I knew I could hurt.  

With the thought of surgery coming up the Drs are all on high alert making sure the girls aren't sick.  So of course last night the girls heart rates were really high even when they were asleep and they just seemed agitated so of course the Drs think that they may have caught something.  So they had a few little tests done that were sent out to hopefully get an answer.  But then as the morning came and went on Abby's blood pressure was appearing to get lower and lower every time they took it and so they began to worry and decided to do a septic (correct me if that isn't the correct term or spelling) work up to make sure that they girls weren't going into septic shock from an infection that they didn't know about yet.  

Today was literally the worst because of this.  I had to watch my girls, who by looking at seemed completely normal, get poked and prodded like I have never seen before.  Blood draws, catheters, IVs, blood pressures, stool sample, respiratory cultures, literally everything you could think of.  And this took a little over and hour and the entire time the girls just screamed.  They cried their little hearts out and there was nothing I could do.  I have never felt so helpless in my entire life.  And a lot of time I couldn't even comfort them because there wasn't room at the bedside because of the amount of nurses that were there.  It felt like my heart was being ripped out of my chest and stomped on over and over and over.  I think the worst thing in the world is watching your children hurt especially when you can't help them.  I can't swoop in after everything is done and rock them to sleep.  All I can do it stand next to them and hold their little hands or rub their backs.  They're getting to be a little to big to comfortably hold on my own anymore and its a little bit of and ordeal to get them out of bed when they are hooked up to IVs and such.   It is just so hard to know they want that comfort of being snuggled when I can't snuggle them in the way that they want, and that I so badly want.  

I love my girls with all my heart but today was one of those days I just kept asking why.  Why my girls, why did this happen to them.  What is the plan here.  I know God has one but I just feel so in the dark right now, and I know things are going to be harder.  Both Riley and I are nearing the end of our ropes and it is such a scary place to be when you feel like your heart can't take anymore and you know that you're not even halfway through this battle.  It just hurts and the tears flow.  And all I can do right now is cry, and pray that somehow God gives us the strength to keep moving forward.  That he gives us the strength we need to be comfort and love for our daughters.  Strength to be there for each other as Riley and I both have struggles.  
Crying seems to make you feel lighter and heavier at the same time.  It's and relief and an exhaustion.  It's a sign of weakness, but also a sign of strength.  I am learning it's ok to let others see you cry.  That this isn't easy and that neither Riley or myself need to be strong all the time.  That's why we have a perfect God whose strength is shown in our weaknesses.  And that is something I am so incredibly grateful for because today I feel very weak. 
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    Author

    My name is Heather Delaney.  I married the love of my life Riley on 10/02/15 and we now have two beautiful girls Abby & Erin, who are conjoined twins, that were born 07/24/16.  We are trusting that God is going to work all this out for his good!

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