Feels like home to me...

It feels so amazing to be back home. I love my own smells & my own comforts. I'm elated that Sully is back in his own environment.
It has been quite a struggle to get Sully back in his routine. Last night was really hard. We were so used to Sully finishing his puree & 4 oz breast milk bottle around 7:30pm & then going to bed & sleeping until 6am.
Our first night home, Friday, he didn't fall asleep until late & then he was up from 3am - 5am, then again at 6am. Then last night, he went to bed at regular time & then was up most of the night. He would sleep for about 45 minutes & then it would take us about an hour to get him back to sleep, only to sleep for a half hour. I am exhausted. I looked for signs that he was in pain or something, but he didn't appear to be. It was just like he was crabby. When he woke up yet again at 4am, I gave him some Tylenol. I also gave him a little prune juice in case he was constipated.
Each time he woke up, it seemed that he wanted to eat. He was sucking back the bottles last night. Maybe he is making up for the days he couldn't eat, but man! He is eating like a football player!
Now that he is 6 months, he's eating puree in the morning & at night & I thought his breast milk intake wouldn't be as ravenous, but I was wrong! Haha! Good thing I pump a zillion times a day. :)

We also started him with pears yesterday. His reaction was hysterical! Every time I gave him a bite, he would laugh out loud! I guess he loves pears! Mama can really cook. :) We're trying squash tomorrow. We're really building up his little palate. And yes, I still make all his food. :)

He ate some of those tasty pears tonight & chugged 5oz & is currently sleeping; let's hope it stays that way!

I'm also thinking positive thoughts for 2 of my bloggy girls who are currently TTC! One for baby #2 & one for #1! Go ladies, go! I'm thinking of you, praying & sending lots of baby vibes! :)

Good night. :)

Courtney

... And we're outta there!

We're on the way home! I've never felt such a sense of relief in my life.
Thank you to everyone for all your prayers & support. They were heard.

We're so excited to close the chapter on these past 6 months of limbo & get on living! :)

Home Tomorrow!

Hello all!

I've been kind of a slacker & I apologize. It has been a very difficult couple of days.
On Sunday evening, Sully started to bleed from his chest tine holes. His pajamas were covered in blood down the front & it was the most frightening thing I've ever seen. Within a matter of minutes, there were about a million doctors & nurses in there, a portable chest xray & a very scared mama. :(
Luckily, we discovered it was just a fluid sac, but it was terrifying nonetheless.
We've been watching him closely & he is fine.
Also, now that he is off the narcotics, he is feeling the pain & literally spent the last THREE DAYS crying. These have been the hardest days ever. Sully is never a crier so it was hard to see him like that. I could not figure out what was wrong.
At 4am this morning, we discovered the issue: Sully had been constipated. Poor kid.
Once he pooped, we was back to himself. :)
I am now happy to report that we are going home tomorrow! Hooray! Sully & I have not been home in 13 days & we're more than ready.
Thank you all for your comments & notes. I would reread them any time I needed a pick me up. You guys rock.

I can't wait to get home with my stinky bear.
I'm off for another month so I'm really looking forward to that. :)

Happiest of Thursdays to you ladies!

Home Tomorrow!

Hello all!

I've been kind of a slacker & I apologize. It has been a very difficult couple of days.
On Sunday evening, Sully started to bleed from his chest tine holes. His pajamas were covered in blood down the front & it was the most frightening thing I've ever seen. Within a matter of minutes, there were about a million doctors & nurses in there, a portable chest xray & a very scared mama. :(
Luckily, we discovered it was just a fluid sac, but it was terrifying nonetheless.
We've been watching him closely & he is fine.
Also, now that he is off the narcotics, he is feeling the pain & literally spent the last THREE DAYS crying. These have been the hardest days ever. Sully is never a crier so it was hard to see him like that. I could not figure out what was wrong.
At 4am this morning, we discovered the issue: Sully had been constipated. Poor kid.
Once he pooped, we was back to himself. :)
I am now happy to report that we are going home tomorrow! Hooray! Sully & I have not been home in 13 days & we're more than ready.
Thank you all for your comments & notes. I would reread them any time I needed a pick me up. You guys rock.

I can't wait to get home with my stinky bear.
I'm off for another month so I'm really looking forward to that. :)

Happiest of Thursdays to you ladies!

Extubation!

The breathing tube is out! Hooray! The docs extubated Sully about two hours ago & he is doing wonderfully!
They are going to remove the catheter in a couple hours, then I can hold him & feed him! I am so excited, I could cry!
I just wanna hold my baby. :)
Love to you all!

Sully Update

Hey everyone!

Well, Sully is still intubated. We were hoping that they could extubate him today, but the doctors said he wasn't ready.
He's got a little fluid in his chest, which is normal, but he wasn't peeing enough to get rid of that fluid. His blood pressure was a little low too & they think that the low blood pressure was causing him not to pee, so they gave him some epi to get his blood pressure going. They also gave him lasix to help him drain fluids.
He responded very well to both meds & started peeing via his catheter!
They are keeping him sedated until tomorrow & we'll try & extubate tomorrow. He was really wiggly in between sedatives so that was a good sign.

Now, that's the technical update; I need to vent a mama update.
Ladies, this is killing me. I am so strong when I'm with Sully, & in private, I'm a complete wreck.
Last night, he started waking up a little bit & his mouth was moving like he wanted to cry & then big tears started to steam down his face. It was heartbreaking. All I could do was stroke his leg & tell him I love him.
I went to our Ronald McDonald room & bawled.
All I want to do is snuggle him in my arms & never let go. But because he is still intubated, I can't even hold him.

Well, I just stopped for a quick snack & to update everyone. Please continue to send us prayers. I will update again tomorrow.

Sleep well all & remember to always be grateful for your life. :)

Courtney

Quick Update

Surgery went PERFECTLY! They were able to get the larger valve in, which is what we wanted. :)
They are keeping him sedated until the morning so he can get a good rest.

I am so relieved.

Every once in a while, he'll stir a little bit & look like he wants to cry & a tear will streak down his cheek.... that absolutely breaks my heart. All in all though, he is doing phenomenal.

I will update again in the morning. A special thanks to Heather for all you sweet messages. :) They are great pick me ups. :)

Courtney

It starts

Surgery has officially started. It should be about four hours.
My little man is so tough
I will keep updates coming.

Courtney

So... I'm awake

I am in dire need of some sleep. Robert & Sully were both snoring & I didn't fall asleep until almost 11pm. Then at 12:30, Sully decided that his belly was upset & spit up everywhere. I had set my alarm for 1:30am so I could pump & have him eat, but I'm nervous to feed him in case he spits up. Also, I'm not in the most relaxed state, so I'm literally getting a half ounce out at this very moment. Me being frustrated doesn't help either. Why, breasts? Why? Sully needs the breast milk! Grr!
This low supply thing is killing me. I'm sure he only puked because he had to have a half formula, half breast milk bottle for dinner last night so I could conserve. Now, I'm getting nothing! ::expletive deleted::

Well, we leave for the hospital in a few hours so I better try & get a few hours sleep.

Until then,
Courtney

CT Update

Good Morning!

I was going to try my hardest and post about his CT last night, but I was exhausted. 
I didn't fall asleep until after 10pm, and then I woke up Sully at 1am to eat because he could have breast milk until 2:30am.  Then I woke him at 4am to have Pedialyte, but he was not having that. LOL
He sat and cried for a few minutes and then went right back to sleep.   I have the best little boy!
Obviously, I wasn't going to go back to sleep, so I just got up and got ready.
Robert and I got everything organized and when we were ready to walk out the door, we put Sully in his car seat and took off.
I was so concerned that he was going to be a pain in the kiester because he couldn't eat, but he was so smiley! He sat and played with this toys in his car seat.  We checked in at the welcome desk and we were taken to the Par 4 surgery area.  They took Sully's vitals and the anesthesiologist came and discussed the procedure.  They told us that they generally intubate babies this age, so they let us know that that was a possibility.
They took him back and Robert and I were on were on our own.  We popped over to the CVCC floor and said hi to all of our buddies.  I made a beeline to the lactation room and used the hospital pump.
We grabbed a quick lunch and then went back to the room.  Sully was awake and wanting his mama.  They told us that he did so well that he needed very minimal sedation and did not even need intubation!  Hooray!  I was very excited to hear that.
He definitely just wanted his mama though.  He was still kind of foggy and sleepy, so we sat back and he took a snooze:

+


We let him sleep for a little while, then they took a last set of vitals, and we went back to my in laws.
Sully was pretty sleepy the rest of the day so we lounged around and snuggled... which was just fine with me. :-)
We are off today so we are going to go grab a Juicy Lucy at the 5-8 club and then Robert, Sully and I are going to go check into the hotel.  Sully and I are going to take a tubby and just spend some time together as a family.
We have to be back at the hospital at 6:30am because tomorrow is the big day!
Wish us luck and say lots of prayers!

I will keep this blog updated throughout the day!

Courtney

Pre-Op: Done

Good Evening and greetings from Minneapolis.

We arrived in Minneapolis last night and we are here with my inlaws.  We spent a rare lazy morning this morning since our appointment wasn't until 10:45.  Sully got up at 5am to eat and have a diaper change.  He sat in my arms and held my finger and chowed his bottle like it was his job.  When he was done, he gave me the biggest, cutest smile and I just couldn't bring myself to put him back in his crib so I laid him in bed with me and we just snuggled, watched a little bit of a movie and fell asleep.
I woke up again at 8am to his scrunched up face and it was the best thing to see right when I opened my eyes.

We gathered all of our donations for Ronald McDonald and we set off for the hospital.  Luckily, my inlaws live only 8 blocks from the hospital so we don't have to spend a lot of time fighting the gawd awful Minneapolis traffic. I have been anxious this entire time and I almost had a feeling of apprehension as we pulled into the parking ramp. All my old feelings came rushing back and I had to hold back the tears. I am so determined not to let Sully see me cry, and so far, I am doing a very good job.
We got to the specialty clinic and we were met by the nurse.  She knew us right away.  We did Sully's weight and height, he is 14lbs 10oz and 25 inches long, and took his vitals. All his stats were good so we headed to the echocardiogram.  You'd think that most babies would scream and squirm well someone rubbed an ultrasound wand over their hearts and tummies, but not my trooper.  :-)  He slept through the first part and then played, giggled and talked to the ultrasound tech the rest of the time.  We were waiting to talk to Dr. V when he was called away for an emergency.  They told us to have some lunch and come back in 45 minutes. 
I decided to use this opportunity to run of to the good ole' CVCC floor and see if any of our nurses were there.  To my surprise, our favorite nurse, Christie, was on shift.  As soon as she saw me, she ran over and gave me a huge hug!  It was so nice to see her.  She is my age and was so fantastic to us.  And she was especially loving towards Sully. The first thing she wanted to know was where was Sully?!  I had left Robert and Sully on the 2nd floor.  She decided to come down to see him. 
Oh, man was she pumped!  I took Sully James out of his car seat so she could give him a squeeze. Christie said that she was worried that he would cry when she held him because he didn't know her, but our mister is kind of a flirt.  :-)  He just smiled and laughed at her and they had a nice little snuggle session.  We even snapped a pic:

Sully and Christie!

After our reunion with Christie, we went to talk to Dr. V.  He told us that everything looked amazing and that Sully is the picture of health.  Dr. V said that Sully is how they wish all babies would be prior to this surgery.  He said that he thinks Sully will continue to amaze everyone and be oh so tough!

Dr. V really put our minds at ease.  I was so nervous for this, but Dr. V is more than confident.  WE left the appointment with light hearts and a renewed sense of positivity!

So happy after my appointment!

We have to be up and at it early tomorrow for his CT scan.  He can have breast milk until 2:30am and then Pedialyte until 4:30am.  I am going to wake him up at 1am or so to eat a bottle and then again at 4am for some Pedialyte. He can't eat after that until after the procedure and they said hydration before could mean the difference between having to intubate or getting to skip that step.

Thank you everyone for your posts and comments. You seriously have no idea how much they mean to me.  I love getting all the positivity!

Wish us luck tomorrow!

Courtney, Robert and Sully 

Happy Mother's Day!

Happy Mother's Day to all you amazing mamas out there. :)

Dear Sully,

Today is my first Mother's Day. I have to tell you, I feel very special. It's like I'm part of this elite club that I had so desperately yearned to be a part of. It was something I dreamed about every night. When you came screaming into this world, you made all my dreams come true.
You're such an amazingly strong little boy. You're a hell of a lot tougher than your mama. These next couple days are going to be hard, but I promise to be there every minute.

You're my best friend. I love you more than I ever knew was possible. You're happy, smart & oh so funny. You're the cutest boy I've ever seen & I'm so blessed that God picked me to be your mama.

Thank you for making my first Mother's Day so fantastic.

I love you, Stinky Monster Bear.

Love You 24,
Mama

Packing and positivity

I have been trying to keep nothing but positivity & light around me at all times, but as I was getting out the suitcases to start packing, I completely lost it. I crumbled. This day is here and I need to be tough. There's no more holding it off. It's time to go to Minneapolis.
I have a list & believe me, I'm checking it twice. For the last surgery, it was so hectic & I didn't even have underwear! This time, I want to be prepared. I want Sully to have his own blankets, clothes etc. I spent hours making a playlist & I made sure to pack my ipod dock. We're set. This is the last night in my own bed for about two weeks.

We're leaving in the morning.

Thank you for all the support. I loved getting the comments & I really felt the love. I will keep you all posted.

You never know how strong you are, until being strong is your only option.

CourtneyAnna

Catch up and Chaos

Hello and sorry for the delay.  It has been completely crazy in my world and I could spend this entire post catching you up on the past 18 days or so, but I really don't have it in me.
In a nutshell, Sully got his first cold and it ended up putting him in the hospital.  Having just a shunt in his heart makes it more difficult to fight infection.  We went into the emergency room on Sunday last week and we were in the hospital until Wednesday.  Obviously, I was not enjoying that stay in there because starting next Thursday, I will be living in the hospital for two weeks for his surgery.

Ah.. surgery.

Yep. It is finally here.  The day I have been dreading/looking forward to is here.  I cannot believe how quickly six months has passed and I can't believe it is time for his big surgery.  In my mind, I knew this was coming, but I have gotten so used to this state of limbo we are living in.  Sunday morning, we leave for Minneapolis.  We are having a Mother's Day lunch with my parents at their cabin in Hinckley, and then heading to the Cities.  We are staying with my in laws.  Sully has a pre-op appointment on Monday morning, a CT at the main hospital in Tuesday, a rest day on Wednesday and then we check in at 7am on Thursday morning and surgery is scheduled for 8:30am. To say that I am terrified, nervous, scared, stressed is the understatement of the year.  I am most definitely not looking forward to them cutting my son's chest open again.  I don't want him to have to have all those IVs again.  I don't want any of it. 
As much as I am dreading this day, I also can't wait for it to be done.  The first surgery, he was so small and they couldn't put in a valve, so the shunt was a temporary fix. This surgery is the actual solution. After this, there is no more weighing him every three days.  No more aspirin every other day.  No more oximeter check three times a day.  No cardiology appointments every month.  We  can finally be normal.  He can finally be like every other kid. After this, there are no restrictions.  That is what I am excited for.

I can't believe I only work today and tomorrow, and then I am off with Sully for almost six weeks.  I am so excited and blessed that I have a job that allows me to do that.  Luckily, it is all paid leave. I will enjoy spending quiet days at home together in the living room chair, snuggling.

Now, I don't ever ask for this, but I know that our community is a tight knit one so if you have time, and you read this blog, can you leave me a comment?  I need some pick me ups.  I am scared, ladies... really scared.  All the comments get sent to my email, so I will see them.  I will be posting updates as soon as I can.  Please send us lots of prayers and positive vibes.
Thanks ladies.

Courtney