Friday, December 30, 2011

I fixed the pictures!

I went back to Sully's birth post and fixed the pictures! I am hoping you can see them now!
I will write an update post tomorrow!~

Love Courtney and Sully James

Saturday, December 17, 2011

Being a mama is amazing

Sometimes I still can't believe that I'm here. I'm in my living room, watching the hockey game, and there is the most beautiful baby asleep on by chest. I keep dipping my head to kiss his and breathe in that intoxicating baby smell. It is the best aroma in the world. We have our feet up in the recliner and snuggled up against the Minnesota cold with warm, soft blankets. This is absolute heaven.
Thank you all for your kind words! While we have a long road ahead, I am confident that Sully will continue to amaze doctors. We have an appointment with his cardiologist on Tuesday. We are lucky that his cardiologist from Children's comes to Duluth every Tuesday. We haven't seen the doctor for a few weeks & I can't wait to show off his awesome growth! Sullivan is 8lbs 7oz. He has gained 2lbs since birth. He is surpassing expectations. We were told that cardiac kids have trouble gaining weight, but not our boy! He is such a trooper.
He has even started sleeping through most of the night! The first time he did it, I shot out of bed and basically jumped in his bassinet just to make sure he was breathing. We are so lucky to have the world's best child.
I posted a picture of Sully. I thought I was attaching it to this one, but I didn't. I'm learning the Blogger app for my phone. Obviously it was an epic fail. LOL

Happy Saturday!
Courtney & Sully

Thursday, December 15, 2011

This has been my longest hiatus ever

Hello ladies and germs!  I cannot believe how long it has been since my last post.  Over a month... how much my life has changed in that month.  I am going to warn you right from the jump that this is going to be an obnoxiously long post, but it will definitely be worth your while.  Are you ready?  Here goes.

As of my last post, you know that I was diagnosed with preeclampsia.  Dr. S put me on bed rest on Thursday November 10th.  I was so ticked.  I really did not want to be on bed rest.  He scheduled me for an ultrasound and possible amnio on Monday morning, November 14th.
The weekend went by incredibly slow. I was sore and tired and very uncomfortable.  I started to get my back spasms back and that did not help me any.
On Monday morning, Robert and I packed my hospital bags, just in case.  We headed to the hospital and met Dr. S for the ultrasound.  As soon as the wand hit my belly, we knew that there was something up.  Dr. S said that baby was ok but that my amniotic fluid was really low and they were going to prep me for a C Section.  I was really nervous but I knew everything was going to be ok.  We were sent to labor and delivery.  I got set up with the fetal monitors, two IVs and a cath.  The catheter was really no fun.  It makes you feel like you have to pee your pants super badly.
At 2:30pm, I was wheeled to the OR.  I couldn't believe that over two years of waiting, trying, and heartache, my little man was finally going to be here.
They gave me the spinal block (which doesn't hurt at all... I was surprised) and they strapped me down to the table.  My blood pressure was 168/110 thanks to the good ol' preeclampsia, but I knew that it would be fine once I delivered.  Once I was all in place, they let Robert in.
It is a really odd feeling to know that someone is slicing your body open and you are totally awake for it, yet you feel nothing.
I waited anxiously.  Dr. S and the nurses gave me a play by play as they were doing the procedure.  And then I heard it.  That sound I had waited so long to hear... a big, beautiful cry.
At 3:18pm on Monday November 14th, 2011  Sullivan James came into this world weighing 6lbs 8oz and 18 inches long.  It was the most beautiful sight I had ever seen:

Robert got to cut the umbilical cord and he was checked over.  Robert followed Sully to the nursery and I decided it would be a great time to crash on the operating table.  Yep... awesome.  All jokes aside, it was super creepy.  My blood pressure plummeted to 50/40 and it was a little hairy for a minute.  After a little extra time in recovery, I was finally sent to my room. 
When I got there, I was told that Sully was having a tough time with his oxygen levels but that it was ok because he was born at 37 weeks so sometimes those babies just need a day to turn around.  It wasn't until 4am that I got to hold him.  He had an IV and an oxygen cannula on his nose.  It was tough to see him like that but I was just so happy that I got to see him and that he was mine.  I cried so hard.  I have never been so happy in my life. 
The next day, family and friends stopped by and sent massive amounts of flowers and balloons.  I spent most of the day in the nursery and popping percocet for the pain.  I started slowly learning how to pump since Sully wasn't able to be putt to breast right away.  The lactation consultant was a complete ass so I really didn't learn anything.  Robert stayed with us at the hospital that day.  That evening, Robert decided to go home and go to work on Wednesday since I was being discharged on Thursday.  At 11pm, the nursed gave me a giant Ambien to help me sleep since I hadn't slept since Friday evening. 
At midnight, I woke up fast.  Something in my gut told me that something was wrong.  I still had to move slowly because I had drainage bulbs in from the surgery.  I threw on my robe and hobbled to the nursery.  When I got there, the nurse was by Sully's bed and they were giving him an echocardiogram.  I looked at them and said, "What are you doing?!"
They told me that they were doing and echo and that it was routine.  I was a little pissed that they had not come to tell me, so I decided to stay in the room.  The echo seemed to take forever.  After that tech left, the nurse said she was going to change Sully's bed and that I could hold him while she did so.  After the bedding change, she told me that the doctor was on the phone. 
I walked to the desk and said, "Hey Dr. B!"  I was not prepared for the nonchalant bomb that he was about to drop on my world.

"Hi Courtney.  Ok, I need you to call your husband.  The life flight is about five minutes away.  They are going to take Sullivan to Minneapolis. He is going to need open heart surgery. OK?"

I called Robert immediately and somehow let him know they were flighting Sully to Minneapolis and that he needed to get here now.  
I went back to Sully and the nurse put him in my arms.  He looked so perfect.  How was it possible that he had a heart problem?  Robert seemed to have gotten there quickly.  He was crying.  That was almost harder for me to deal with.  You never really see your husband cry. He sat down next to me.  I leaned on him and let the tears flow.  Just then, this fat nurse came in with a digital camera and said, "Here, sit next to each other.  We are gonna take some pictures.... ya know... just in case."  I was flabbergasted.  She kept saying, "Smile!"  Robert and I just stared at here while she was snapping pics.  
She printed them off right there and handed them to me in an envelope with his name tag.  What the fuck was going on here?!
Then the life flight team from Children's in Minneapolis came.  It was so scary.  There was this giant stretcher with an isolette on it.  They loaded Sully up.  We first needed to go to the other hospital in town to use their NICU.  Sully needed a medicine called Prostiglandins and they were going to administer it there.  
After Sully was set, I went back to my room and started packing.  The nurse on call came in and asked what I was doing.  I told her I was leaving.  She said, "What do you mean?  You just had surgery?!"
I told her I didn't care and she was going to take these drainage bulbs out, or I was going to rip them out myself.  
We packed up everything and hauled ass to the other hospital. 
I was a complete mess.  I couldn't stop crying.  I hadn't slept nor showered in days.  How did this happen?
In the NICU, they had taken the little chunk of Sully's umbilical cord off and replaced it with a central line IV.  They also put one in his foot.  They were giving me papers to sign in case they had to intubate him on the flight.  My whole life was a swirling ooze. We were only in the NICU for minutes.  Before I knew it, Robert had gone to get the car, and I was walking out of the door to the hospital.  As I got to the car, I saw a scene that will be burned in my brain forever. 
Robert was sitting in the driver's seat, with the Monster's Inc. Sully stuffed animal. He was looking out the windshield and crying.  He kept saying, "He's gotta be ok.  He's gotta be ok."  Over and over again.  I grabbed him to snap him out of it.  I promised him that everything was going to be fine and God wouldn't have finally blessed us with this miracle, just to take it away. 
We had a 2 hour drive to Minneapolis ahead of us.  We ran home to grab  some clothes.  I darted upstairs and grabbed Sully's clothes and car seat. Robert asked me what I was doing.  I told him that we weren't leaving Minneapolis without our son.

The drive down there was the longest car ride of my life.  I was sore from crying and the surgery.  My mind was reeling and I could barely breathe.  As we approached the hospital, we got the call that Sully was in the NICU there, and he was doing well.  When we arrived at Children's, I was escorted by wheelchair to Sully's room.  He was hooked up to a million wires and looked so small.  That's when the sobs hit me again.  My poor little boy. 
His NICU nurse was outstanding.  Lisa helped me sit down and called the cardiologist so someone could FINALLY explain to me what was wrong with my son.
Dr. Burton came to the room.  He explained that Sullivan had Tetrology of Fallot with Pulmonary Atresia.  In normal people speak, this is the sitch:
When a baby is in the uterus, a thing called the Ductus pumps the oxygenated blood to the lungs.  After the baby is born, the ductus closes and the pulmonary valve takes over.  Well, Sully's valve didn't work so when his ductus was closing, his lungs weren't getting the oxygenated blood.  The prostiglandins that were given to him before we left Duluth, was to keep that ductus open.  Dr. Burton also told us that this condition was serious and needed surgery.  Because of Sully's age, they could not put in an artificial valve yet, so what they were going to do was put in a shunt that would act like a valve and then in a few months, they would go back in and put in the valve.  I felt a little better after speaking to Dr. Burton. His surgery was scheduled for the next morning.  
I had called both of my parents before leaving Duluth and they both got on planes to be with us.  Robert's parents live in Minneapolis and they were there right away too. 
I sat in the NICU and waited.  I waited and cried.  When my mom came, she took one look at Sully and just started bawling.  I kept telling her that everything was ok and Sully was going to be fine.  She got to hold him too!  Dad and Sandy weren't far behind and they too got to get in some snuggle time. At 7pm, we left the NICU and were taken to the CVCC (CardioVascular Critical Care) floor.  The doctors told me that I needed to get some rest.  Duluth had told them that I was only 1 day post op and they said I needed my rest.  Luckily for Robert and I, there was a Ronald McDonald house in the hospital and we were given a room to stay in.  We got down to the room and took a much needed shower.  We laid on the bed and prayed.  I haven't prayed that hard or that much in a long time.  I just wanted God to make sure Sully was ok. 
The next morning, me and Robert and all of our parents went to Sully's room.  We had been told that he was sedated and it was the saddest thing I had ever seen.  We all held hands and prayed for God to watch over Sully during his surgery.  We asked God to make sure that all the other babies and families on this floor were protected too. 
Robert and I got to walk to the OR with him.  He looked so small on that little bed. When he went behind those doors, I completely and totally let go.  I couldn't contain the sobs.  They came out and racked my chest.  Robert picked me up and all we could do was wait.  
After a very long three hours, the doctors came to tell us the good news: Surgery had gone amazingly well and Sully was just fine. I couldn't wait to see him.  We got to his room and it was heartbreaking.  He had even more tubes, including two big ones that were draining fluid from his chest.  He was still sedated.  I just held his little hand and told him how much I loved him.  

The doctors came in and told us we were out of the woods and now he just had to heal.  Everyone kept telling us that we may be in for a two week stay and it was all up to Mr. Sullivan and how fast he would heal.  Well, someone must  have forgotten to tell them that he is a fighter.  Just the very next morning, the breathing tube was removed and he was only on oxygen.   Some of them meds were being stopped and were were even told that we might be able to try feeding him that night.  The nurses told us that most of the time, babies have to stay in the hospital because they don't know how to eat, so it takes them a long time to get the hang of it.  Well, not my little man.  The first time a bottle went to his lips, he drank like a champ.  
Over the next few days, more and more tubes, wires and doohickies were removed.  I even got to snuggle him again!  And forgive my appearance.. it had been a rough couple of days:

Sully kept astounding the doctors.  Robert and I were slowly learning all the new things that we would have to do when we got Sully home.  His oxygen saturation would need to be taken every 4 hours.  He would be on Vitamin D, aspirin and Lasix.  He would have a home nurse come and see us every other week.  See, normal people have O2 sats of 99-100, but Sully will only sat in the 70's and 80's until he gets the valve.  The reason we check the sats is because in time, he will grow out of the shunt and the O2s will drop.  That will be our signal to go to Minneapolis and have the valve put in.  That will be anywhere between 3-6 months from now.  That valve will last him until his is 4 or so.  Then he will need it replaced and so on. 
To our surprise, on Wednesday November 23rd, the day before Thanksgiving, Robert and I were able to pack up our boy and take him home!

Thanksgiving was extra special this year, as we have tons to be thankful for.  I have decided to take off about 8 months from work, until Sully is healed from surgery #2.  It is gonna be tough, but it is just something I need to do.  He can't got to daycare anyway.  Because of the surgery, you can't pick him up under the armpits and he needs to not be exposed to a crap ton of germs.  I am enjoying our time together.

So, as you can see, I have been very busy this month.  I am sure I am leaving a million things out, but I am going to update more often so I don't have these mammoth posts every time.  For now, Sully is amazing and the light of my life.  I love being home with him and being a mommy.  He is such an amazing baby too.  He sleeps most of the night and eats like a champ. He smiles and poops and grunts and wiggles and steals my heart.  :-)

I will end this post with some pictures of my little fighter:

                                              Uncle Nick on leave from Iraq and meeting Sully for the first time. :-)

                                                                                  Sully and his future wife!

First tummy time!

I hope everyone is doing well!  I have been checking in on you guys!  Talk to you all very soon!

Courtney and Sully James