Thursday, November 29, 2012

Jayden's First Birthday

One year ago, at 9:42am we welcomed this beautiful baby boy into the world!! Jayden Charles Smelt weighed 7lb, 8oz and 18.5in long. He was immediately whisked away from us and even though I didn't see him until several hours after he was born, I was overwhelmed with love and joy!! Even with his broken heart, he was completely perfect!! Happy birthday, Jayden!! I wish you were here to celebrate with us, but we will be sending you a bunch of balloons. We love and miss you so, so, so, so much!!


Sunday, July 29, 2012

Jayden's 2/3 birthday

Today Jayden would have been 8 months old.  Today was tough.  I can't believe 8 whole months ago I
gave birth to a perfect baby!!

We brought some of Jayden's toys and went to sit with him for quite a while this afternoon.  Every time we go up there, it is calm.  Within in a few minutes, the wind starts to blow.  All of his pin wheels spin and spin.  We sat and talked for a while before we left.  Every time we leave we tell him bye, we miss him, we love him and we always beep the car horn (with the exception of once when there was a service going on).

Happy 2/3 birthday, Jayden!  I wish you were here, but I hope you are having a blast.
We love and miss you!!



Wednesday, July 25, 2012

Your friends

Hi Jayden.
I talked to Ethan's mommy again tonight, and it made me hope you guys are up there playing together.  I know you two were meant to be friends!!  I hope you are up there with Rowan, Evan, Caiden and all of the other heart kids too.  Make sure you all keep an extra close eye on the ones here still fighting, and all of us missing you.  We all love you!!  Have a goodnight and give each other hugs!


Good night, baby boy!!

Good night my sweet Jayden!  I love you and I miss you so, so much!!  I wish you were here with me
and daddy, but I know you're okay now.  I hope you are tucked in nice and tight.  Sweet dreams.  
Good night, Jayden.  We love you!!!!!


Sunday, July 22, 2012

I know he's here

Everyone has different beliefs.  I don't judge anyone for theirs, and I think everyone has a right to their
own thoughts and beliefs.

When I was growing up, religion wasn't a big part in my life.  My family would attend church on Easter and Christmas and we would say a short prayer before we ate dinner.  I grew up believing God was the almighty power and you either went to Heaven or Hell, depending on your life choices.  I didn't really know about any other religions, aside from Christianity.  Once I got older, I began exploring a little more.  I always believed there was a God, but was always confused as to what happened after death.  I always wanted to find a religion that made sense to ME.  I want to believe in something that makes complete sense, not just believe in something because I am told to.  I opened myself up to learn about different religions.  It seemed like I could believe some of the things being taught, but not all of it.

I was stuck "in limbo" again when I had Jayden.  We were overwhelmed with Jayden's hospital trips and care, that we never spent much time worrying about religion.  We would "pray" that he would be okay and that he would not have any struggles.  We wouldn't drop to our knees, fold our hands and bow our heads, but we would talk to God.

After Jayden passed, I was grasping for answers.  I wanted to know why my baby was gone.  Who took him from me?  I contacted people I knew who could give me the answers according to what they believed.  What I wanted to believe was different than what I was being told.  

I always heard other people tell me that their loved ones who had died would send them signs.  I was skeptical when I heard these stories, but I am a believer now!!!  I honestly believe Jayden is sending me signs,  I believe he is here with me.    I also hear about ghosts, which I still don't believe in.  

In the beginning, I was numb.  I didn't believe he was gone.  I thought that at any moment, the hospital was going to call me, tell me they made a mistake and that Jayden was okay!  I think it was around the time his headstone was placed, reality really set in.  Jayden was gone and it hurt!  One good thing that came from this vast realization, was that I could sense Jayden's presence.  If you don't believe me, it doesn't mean it didn't happen.

I cry all the time.  In the beginning, several times a day.  Now, I still cry but not as often.  Several times, I have felt this peace surround me.  I suddenly feel okay.  I still know I am upset, but I don't feel upset.  If I tried to cry, I couldn't.  I know he's there.  When I ask him for signs, I get them.  He's come to his dad through dreams, good dreams.    

Jayden has made me realize what happens after death.  I still sometimes find myself questioning "why" he was taken from me.  Was it because God wanted to free him from the pain?  Whatever it was, I truly believe everything happens for a reason.  I know Jayden is whole and pure.  His heart is perfect, he doesn't have any tubes or wires.  He doesn't need to take numerous medications a day, there will be no more surgeries.  His chest is clear of any scars.  He was always perfect to me, but now he knows no pain and is free.

I miss you, Jayden and I will love you forever!






Thursday, June 28, 2012

Is that you, Jayden?

Every Tuesday evening, we go visit Jayden and pick up his things (since they mow and throw everything away Wednesdays).  This Tuesday, there was a little frog sitting on the picture on Jayden's headstone.  He was very calm and didn't try to escape from us.  I caught him and everyone held him for a few minutes, and we put him back.

The next afternoon, we went back to bring his things back and guess who was still sitting there?  Yep!  The little brown frog.  He was a little dry from the heat, so we poured water on him and everyone held him again.  We put him back, said good bye to Jayden and left.

Tonight, my friend who visits Jayden with me went out there to water his roses.  I asked her to see if the frog was still there, and sure enough he was!  I think he is our sign!


Saturday, June 9, 2012

How dare you...

Jayden has been buried for less than 4 months now, 4 antagonizing months.  In that short amount of time, there have been several incidences where ignorant and selfish people have had the nerve to walk up to his grave, look down at the beautiful picture of him on his headstone and STEAL THE THINGS LEFT OUT FOR HIM!  Yes, that's right.  There are people stealing things from MY baby's grave.  Things we lovingly go out and pick special just for HIM.  How dare you.  It hurts, it breaks my heart and it makes me feel guilty.  I don't know why, but it does.  I ignored it the first couple times.  Finally, I wrote a letter and left it out with him telling people to stop taking his things.


Pretty sad, huh?  Well, that didn't stop them from continuing to steal from him.  Every time something was stolen, I called and reported it to the funeral home.  Finally, this last time I HAD ENOUGH!  I called the Riverside County Sheriff Department to file a complaint.  The officer that got in touch with me told me there was nothing that could be done, unless we witnessed someone in the act or the person was caught with the items, which is what I expected.  He took a report and a description of every thing that had ever been stolen.  He called me back later that day to tell me he was with Jayden and had spoken to his fellow officers about patrolling the area more often.  He also let me know that another officer had arrested a guy a few weeks prior for stealing off of graves at the cemetery Jayden is at.  He told me if they could match anything this guy had with what has been stolen from Jayden, we could get our things back and would have the option to press charges on him.  I don't know what goes through people's minds when they do this, or what they get out of it.  Only one thing that has been stolen was worth a small amount of money, nothing else really was.  That isn't the point.  These are sentimental things left for my baby I can't do anything for, except this.




Friday, April 27, 2012

Missing you

Hello my sweet boy!!
Did you see the new flowers we brought for you?  We picked them out special just for you.
We all miss you so much down here.  I wish you were still with us.  You would have been turning 5 months on Sunday!!  I know you would be smiling and laughing.  We would also be getting ready for you to have your second surgery.  Things would have been much easier then.

I cried again today.  I can't help it, I just miss you so much!!  I see your pictures up on the wall and I wish they reminded me of the good times, but they only remind me that you're gone.

I am spreading awareness on our behalf.  I know you would not want this to happen to anyone else's family.  We will be writing a book to tell your story and spreading the word about how real Congenital Heart Defects really are!!

I love and miss you so much, Jayden!!  You will never be forgotten and I will continue to share your story!!  I can't wait to hug and kiss you again.  XOXO

Love,
Mommy.

Tuesday, April 10, 2012

Jayden's Beads of Courage

For those of you that don't know, while Jayden was here with us, fighting - he was earning beads for everything he braved through.  Every appointment, medication, IV poke and more, he earned a bead to represent his courage.  We finally got the rest in the mail, and I am proud to show them off.  Jayden was a VERY tough little boy who went through way more than he should have, but he made us so proud and fought his little heart out!

2 months already?

...It still feels like it was only yesterday.  I can't believe you have been gone for 2 months, the hardest 2 months I have ever had to deal with.  I miss you so much, Jayden.  I hope you know that everyone down here will love you forever!!!  I can't wait to be with you again.  I am looking at your picture right now, and it kills me to think you are not here anymore.  I can't say it enough, I would do anything to have you back.

For Easter, everyone wrote Jayden letters and drew him pictures.  We had a bucket full of eggs stuffed with love!  Next, they will be going into his scrapbook.  We had his headstone decorated with Easter bunny stickers. We tried to do anything we could to make his first Easter special (even from way down here).


Today, we went on a hike with Crystal and Cameron.  All I could think about is how fun it would have been to have you there with us, in the baby backpack.  I know you would have loved walking through the water, throwing rocks and walking through the forest with us.

I hope you are having fun up there with all of your heart friends.  I  hope you are watching over all of us that love you, and keeping an extra close eye on your friends here that are still fighting.  We love and miss you sooooo much!!  XOXO

Love, mommy  <3

Wednesday, April 4, 2012

Today Sucked...

Today sucked…
We went out to San Bernardino today to get Jayden’s birth and death certificates.  It killed me to see “DECEASED” written across his birth certificate in big bold letters, and the death certificate pretty much speaks for itself.  No mother or father should ever have to get into their car to go pick up their child’s death certificate.  Receiving the recognition of a child's birth should be a joyous thing, but I hated it!

After that, we needed to go to Loma Linda University Medical Center – the hospital Jayden died at.  We walked through that all familiar lobby, up the familiar elevator and into the familiar ECHO lab.  I sat in the waiting room filling out forms to have his records released, the same waiting room we were sitting in with Jayden just a week prior to his death.  I looked over at the exact seats we last sat in, where we were taking pictures of Jayden making his silly faces.  I remember him looking at us, wondering what on Earth mommy and daddy were doing!!  After being charged WAY too much for his records, I was THRILLED to walk out of that hospital.

Later tonight, we went to visit Jayden only to find his things were messed with once again.  The heart-shaped cactus we bought him had been destroyed and there was dirt all over his head stone.  This is the fourth incident we have had with people messing with or stealing his things.  I don’t understand why people do that.  It is really annoying, and it is making me dread going up there.  I now know to expect the things we leave for him to be gone or trashed.  I have decided to make a sign and post it to remind people what they are doing is wrong.

One thing that did lighten up the day a little was when we were getting ready to say goodbye to Jayden, the sprinklers came on and soaked all of us!!  It was already cold, and we had just put on our jackets, only to have to take them off again and freeze!

I am excited for tomorrow.  A lot of our family and friends have written Jayden a letter made him a picture.  We filled an Easter bucket full and will be bringing them up to him.  If they are still there after Easter, I will be bringing them home and putting them in his scrapbook.

Jayden,
Mom and Dad miss you so much!  There is not a moment that goes by that you are not on our minds, or being talked about.  There is nothing we wouldn’t do to have you here with us, happy and healthy.  We love you sweet boy and can’t wait for the day we get to see you again!!!!

Saturday, March 24, 2012

We Miss You!

Jayden is on my mind all day, everyday.  Why is it, as bad as I want to, I can't see him in my dreams?  I have only had one dream of him since he passed, and it was terrible!  I talk about him all the time, I never stop thinking about him and none of this has gotten any easier.

I hope you are having fun in Heaven and playing your (whole) heart out!  I love you sweet angel.
Love, mommy.

Saturday, March 17, 2012

Jayden's Headstone

Yesterday turned out to be an okay day.  I was super excited that his headstone was finally finished and that it had been delivered to the funeral home.  We went up there with our friends Chris, Heather, Cameron, Steven, Sable, their daughter - Aubri and Jake's mom - Linda.  His marker turned out BEAUTIFULLY!!  I was a little worried about the black and grey pictures, because some of the others one I had seen were not as nice as they could have been.  I am happy with what we chose, because we all love it!!



Wednesday, March 14, 2012

March 14, 2012 - Having a Rough Night.

As most of my followers know, Jayden lost his battle with HLHS on February 10, 2012.  He fought every moment of his life, and he fought hard!!  That little boy is the strongest person I know, by far.  There are very few people on this planet who will ever go through what he did.  I am so proud of him!!

There is nothing I want more than to have him back with me, as selfish as it sounds.  I miss everything about him.  His smell, his cry, his funny faces. Everything.

We had Jayden's "Celebration of Life" on Friday, Feb 17th.  Exactly one week after he passed away.  Everything was beautiful, except the way I felt.  I was torn apart.  I could not focus on anything that was being said, even though I knew it was all good.  Nobody would ever have a single bad thing to say about Jayden.  He changed a lot of lives, and all for the better.

We cried and shared stories about Jayden.  We love him so much, and we miss him more than anything!!

I have been struggling mentally and physically through this whole thing.  Sleep does not come easily, and usually not on it's own.  I have to force myself to eat, and I get sick to my stomach.  He has not left my mind for a single second, and I cry all the time.  It has been a month, but it seems like so much longer.  It still hurts like it was only yesterday.  Honestly, this is not getting any easier.  All I want is my baby, my Jayden.

I will admit it, I know it sounds terrible... But I secretly hate all pregnant women.  I am happy for them, but my jealousy is uncontrollable!  I don't literally HATE them, I just wish I still had my baby... Here and healthy. Nothing infuriates me more than to see people take advantage of having a healthy baby.  I did everything I could to make sure I could have a healthy pregnancy, and look what happened.  Then there are people who smoke, drink and God knows what else during their pregnancy and they have healthy babies.  I would NEVER wish this on another baby, EVER but why do these things have to happen?  Why do sweet innocent children like Jayden, and so many others have to go through this?  It is breaking the natural order, children should not die before their parents.  It is not fair and none of them deserve this.

In honor of my amazing son, I have founded Jayden's Whole Heart Foundation.  We will be raising money to help families with CHD children who are currently getting treatment, or who have recently passed and are struggling financially.  We never understood how outrageous medical bills and funeral costs could be until we were forced to pay them.  We would like to help take that burden off of these families minds.

We visit Jayden all the time, at least a couple times a week.  We have beautiful flowers and other meaningful items we leave with him. If I could, I would never leave.  I want to be by his side every second until I can be with him again.   I wrote him a letter on his one month "angelversary", sealed it and left it at his grave site.  Anything to make me feel closer to him.  I wish he was still here, or he could come back so I could give him a tight hug and huge kiss!!

Tonight I am having a rough time.  I have been going through his photos, and it breaks my heart knowing that is the only way I can see him.  On my computer screen, or on a sheet of photo paper.  Why can't I look down into my arms and see my sweet baby sleeping there?  That is right where he should be.

Sorry for going on, I am just losing my mind and I honestly feel crazy.  Jayden was my entire life 24-7 for 2.5 months.  Doctor appointments, ECHOs, medication, feedings, sats, diaper changes.  There was never a spare second of the day, and I would take it all back if it meant I could have him back.

I love you SO much, Jayden.  I miss you like crazy and I can't wait for the day I get to see you again.
You never leave my mind, and I will never forget you.  You have a very special place in my heart and that is where you will stay, forever!

Sunday, January 29, 2012

January 29, 2012 - Mommy's birthday

Jayden was completely weaned off the oxygen at 6 AM.  He has been off of it now for 15 hours and has been able to maintain his sats the entire time!!!  He has had no new concerning symptoms for almost 2 days, so the doctor said we SHOULD be able to go home tomorrow.  Fingers crossed... tight!  We were told we could go home yesterday, and Jayden had a different plan.

We just gave him a bath and his tummy is full.  Now he is cuddling with daddy and getting ready for bed.

Good night all.


Saturday, January 28, 2012

The Interstage Rollercoaster

When people told us that these post-Norwood babies are very fragile and go down hill very fast, they were serious!  Jayden was home for almost 6 weeks, and things were going GREAT!!  His sats stayed within is baseline (or higher), he always ate really good for us and was generally a happy baby.  On January 23, he was having smaller pees than normal, he was eating less - more often and he was overly tired.  We called into the Cardiac ICU, and they told us to bring him in RIGHT AWAY!  We packed up a  few important things, and headed for the hospital.  When we were about half way there, the hospital called to let us know the ER was expecting us and they had a bed on hold for him in the PCICU.  I sat in the back seat with him on the way there, and kept his oximeter on the entire time.  We got to the ER and his sats were stable.  They did an ECHO on him, and everything looked fine.  Then when they went to run an IV, things got bad.  I am just going to copy and paste my updates from Facebook, instead of trying to retype everything:


Monday, January 24:  
6:10 am:  "Jayden update: Boy, last night was a very tough and emotional one for us!! We took Jayden in originally because he was showing signs of dehydration, and we knew with him being interstage with the shunt, this can be very dangerous for him. The hospital called when we were about 20 minutes out from the hospital to let us know ER was expecting us, the cardiologist was there with the ECHO tech and the cardiac unit had a bed on hold for us. As soon as we got there, they did the ECHO and everything came back fine. There had been no changes since his previous ECHO. During all of this, his sats were in the high 70's and HR was good. (his baseline is 81-85%, so a TINY bit low for him). The nurses tried running an IV on him, but because he was dehydrated, they had to keep poking him. He tolerated the first few pokes okay, but then he started de-satting into the 50's, his HR went up over 200 BPM and he started sweating really bad. I know his normal, and I know his danger signs. I told them they needed to STOP and give him a break, let him settle and catch his breath. They did not listen to me and kept poking him, until he crashed. He dropped into the 40's and they could not bring him back up. A ton of people rushed in, nurses, doctors, respiratory therapists. They put him on oxygen through the mask, and eventually got him up to the 70's. They said they needed to pull the food from him stomach and intubate him to keep his sats steady. By that time, I was feeling nauseous and like I was going to pass out, so I stepped outside for a few minutes and talked to my mom. I also called up to the Cardiac Unit and told them the ER wasn't listening to me, they were making me worse and that I wanted someone from the PCICU to come take him. When we went back in, they were trying to run a central line through his neck. My poor baby had 4 people holding him down, and all of this without any pain management! The cardiac unit called down to the ER and told them to bring him up NOW. They said forget the line, forget the intubation. When they got him up the PCICU, the doctor came to talk to us. She said they NEEDED to run the lines because he was completely dehydrated. She said they were going to sedate him and try for under his collar bone. She said he was de-satting into the teens, so they needed to work fast. We weren't able to go back to see him for a few hours. Finally, they called my cell to come see him. He is on high flow O2 and maintaining his sats in the high 80's. They said as soon as he wakes up and cues to feed, they would feed him. They still couldn't get a central line in, but finally got an IV in his arm. They are giving him fluid through that as well. We visited for a little while, but he was still asleep from the sedation, so we thought we should go get some too! I called a while after we left, and he had eaten 2oz of sugar water, peed, pooped and went back to sleep. I just called a little bit ago and he was eating again, breast milk this time. He is in isolation until they get the results back saying he is or isn't contagious, which could take until Thursday."

6:14 am:  " Thank goodness for PCICU calling for him when they did! ER was insisting on intubation, but Cardiac didn't really think he needed it. So we dodged that bullet!"

6:27 am:  "I was ready to push my way through the crowd around him, and take him up there myself. I plan on talking to someone today, I know my rights and I have the right to tell them to stop. I understand they needed the line to hydrate him, but I truly believe he would have been better of if they had listened to me!!"

10:06 am:  "Jayden's oxygen has been lowered and he is pigging out! He ate 3-4oz every few hours last night. That's my boy :D"

10:19 am:  "He has some sort of respiratory illness. They did labs, but that test can take a couple days. Even though he was still eating some, his fluids are being sucked out of him."

8:52 am:  "Jayden is still in the hospital, but doing a lot better. He is eating his full 4oz at every feed and staying awake with us for a couple hours at a time. They are weaning him off the Milrinone tonight (currently at 0.1mL) and still weaning him off the O2 (at 1.5L and 35%).  Also, his most recent ECHO actually looks better than his last one!! All of his tests and labs are coming back negative, so there is no explanation yet to why this happened."



Friday, January 27:  
2:38 pm:  "Jayden update:
They completely weaned him off the Milrinone last night, and the O2 came off this morning. They want to monitor him for 24 hours, then we should get to go home. He is staying within his baseline for most of the time, but has dipped to 76% a couple times for a few moments. He is eating well, and is awake and alert much more often. The attending doctor this morning did say they may want to do a heart cath, if his cardiologist agrees. They want to do it "electively", so they will plan for us to come back after he is fully recovered. We have an ECHO on the 2nd, as well as a Cardiology appointment. All tests and cultures came back negative, so this is a big mystery!!"


7:50 pm:  "Right after I posted this, I went back to the hospital. He had thrown up twice, was super pale and could not get his sats above 80%. They put the oxygen back on and ran blood tests. Looks like we won't be going home tomorrow :("

10:40 pm:  "His hemoglobin is at an 8. Also, they said before his lungs were clear, but they have been suctioning thick mucous out today, so I asked them for an X-ray."


Saturday, January 28: 
1:38 pm:  "Jayden will be getting his transfusion any time now. His sats are dropping low (for him), even when he is on O2. Hoping this will be the pick-me-up he needs!!"

3:38 pm:  "I guess they called the attending last night, and they were satisfied with his hemoglobin numbers (8), so they told us last night they were not going to transfuse. Then they called us this morning and asked us to come in as soon as we could so we could sign the forms, because they had changed their minds. They will be giving him 45mL over 4 hours."

8:39 pm:  "Nobody is going to like me there tonight. I am not happy, and I am not playing the "wait and see" game anymore. I keep telling THEM that there is something going on, and they don't see to want to find it. Getting really annoyed.  I am going to head over there while I have this built-up anger!! I am sick of seeing my poor baby go up and down with no explanation."

10:40 pm:  "I went in and made it very clear to them I was not going to have my concerns dismissed any more. I brought up every concern I had, and finally felt like someone was listening to me!! After I was done, she assured me all of my complaints were valid and she repeated everything back to me to assure she passed everything along. She paged the team for us, and now we are just waiting. I also told her that we were getting ready to have him transferred somewhere else. I felt bad for being a little mean, but I told her I need to protect and take care of my baby."



COMFY BABY  :)










Friday, January 20, 2012

From birth to discharge.

November 29, 2011:  Shortly after Jayden was born, the neonatologist came back into the delivery room and got Jake so he could take a quick peek at our new baby.  He was able to visit with him for a few minutes and take a few pictures.




After daddy got to see Jayden, they moved him into the NICU to run his lines.  They told us this should take about 45 minutes, but it ended up taking 6 hours!!  I did not see my son until he was close to 8 hours old, and this is how I saw him for the first time...



Shortly after I was able to go in and see him, Grandma Linda, Great-grandma Gaukel, Grandpa Mike, Page and Aaron came to visit us.  Since only one extra person could go in and see Jayden at a time, only Grandma and Great-grandma saw him.  We stayed in the NICU for most of the rest of the day, and tried napping any time we weren't.

November 30, 2011 - 1 day old:  I woke up extra early to go see Jayden in the NICU and was pleasently surprised to see my baby extubated, wide awake and happy!




I must say though, the best part of that day was getting to hold our sweet baby boy for the first time!!!!!!  It was tricky and took a while to get all his lines untangled, but it was so worth it!




Wednesday, January 18, 2012

4 months behind... (2 of 2)

November 28, 2011:  We left the house at around 4:30.  I wanted to stop at Subway and make sure we had enough time to get to Loma Linda.  We checked in at around 5:30.  They came and got me from the waiting room at about 5:45.  When they first checked me, I was 1.5cm dilated and about 35% effaced - this was going to be a LONG night!!  The doctor ordered Cervadil to begin the induction.  That was placed at 9:25pm, and I began contracting almost immediately. 

November 29, 2011:  They checked me again at 1:45am and I was 3cm.  At 6:10am, the Cervadil fell out.  When they checked me this time, I was 3.5cm and 70%!!  At 6:23 they started the Pitocin drip.  Now the contractions got a lot stronger.  I could no longer rest, and it was hard to sit still through a contraction.  At 7:20am they upped the Pitocin drip and the contractions got INTENSE!!!  They were very close together and I was getting no relief in between.  At about 9:35, I stood up and got "that pressure feeling" and I told the nurse the baby was coming out NOW!  She checked me and I was only 6cm.  Ugh!  What a disappointment.  Well, less than 2 minutes later I felt my body pushing on it's own.  She checked me again, and I was fully dilated!  That's right... 4cm in 2 minutes!!!  :D  The nurse called in the doctors, additional nurses and the NICU team and within seconds, the delivery room was full of people.  Once they dropped the bed, the nurse told me I could start to push as the doctors were getting dressed to delivery my baby.  Well, half a push and his head was out.  The doctor barely had time to turn around to grab him!  At 9:42am my heart hero was born weighing 7lb 8oz and 18.5in.  I barely caught a glimpse of him as the NICU team scooped him up and ran out the door with him.

4 months behind... (1 of 2)

Well, I have four months of updating to do here.  Since my last post, we have been through so many ups and downs and it has been EXHAUSTING!

I last posted on September 12, four days before I heard "those words"....
September 16, 2011:  Jayden was officially diagnosed with Hypoplastic Left Heart Syndrome.  I remember going into that appointment hoping to hear anything but that.  I could hear the tech and the cardiologist saying "Hypo Left", and I could not stop myself from crying.

September 20, 2011:  Jake and I drove out to Riverside for our 3D ultrasound.  We were almost sent home with a return appointment, since Jayden did not want to co-operate!  He had his feet up over his head and his hands in front of his face.  Eventually, the tech was able to wake him up and we got to see our sleepy boy!  :)  This was a happy distraction from the devastating news we had just gotten.









September 22, 2011:  We had an appointment with the high-risk/genetic doctor to get the results of our amniocentesis.  My heart was pounding so hard I could feel it through-out my entire body.  It was pounding so hard in my head, I could not hear anything else going on around me.  What a relief it was to hear that doctor say that the tests came back normal.  There was no sign of any genetic disorder!!!!  

October 6, 2011:  This was our first appointment at Loma Linda.  It was only an ultrasound, but it was very exciting to see my gorgeous baby growing!!

October 22, 2011:  We met my high-risk doctor who would be caring for me for the remainder of my pregnancy, Dr. Barry Block.  He is an older man, but very energetic and laid-back.  He was friendly and explained anything I had questions about very well!

November 2, 2011:  This day was crazy!  We had four appointments in one day, thankfully all in the same place.  I had an NST, ultrasound, regular doctor's appointment and a tour of the NICU booked.  I actually had to send my husband for the tour of the NICU, while my ultrasound was being done and the neonatologist came to talk to me and answer any questions while the ultrasound was finishing up.


November 7, 2011:  This was the day of our last fetal echo.  It took them almost 3 hours to get a decent look at the baby.  Since I was 36 weeks pregnant and he was so squished in there, it was difficult to see what they needed to see.  This was the day they told us that the function of the right side of the heart was not very good and that Jayden would most likely not be eligible for the 3-stage surgeries, and would need a heart transplant.  As if what I was already dealing with wasn't enough!  I did not speak to anyone or even get out of bed for several days.  I ignored all phone calls and visitors and just stayed by myself under my blankets.  Reality was really setting in now and I was not ready to deal with it.

November 11, 2011:  I had a regular prenatal check-up, nothing new.

November 18, 2011:  I had another regular prenatal check-up.  This time my induction was scheduled for Monday, Nov 28th at 6pm.

November 23, 2011:  My last prenatal appointment.  I was 1cm dilated.