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.

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  :)

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!

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.