Wednesday, February 22, 2012

The good ole' cardiologist

Morning all!

I want to start out this post by giving my condolences to an IF mama.  I read about a woman named Mo on another writer's blog and Mo lost her baby boy Nadav yesterday at 22 weeks.  It is absolutely heartbreaking.  I always cry when I hear about this; strangers or not.  The IF community is a tight knit one and we all feel the pain when one of our sisters is hurting. I am so sorry, Mo. I am praying for you and your family.

Yesterday, we had Sully's monthly appointment with the cardiologist.  I thought we were just going in for a routine appointment but we got an unhappy surprise when we remembered he had to have a chest xray. :-(  Poor guy!  He really  hates those because he hates to be naked.  And of course, this wasn't a normal xray that we were used to, oh no, this time, they wanted to look at his VSD (Ventricular Septal Defect; the hole) and for that, they had to look at the side.  I had to strip Sully down to his diaper, then lift his arms over his head while they wrapped this plastic tube around him.  He did NOT care for that.  I actually ended up crying a little because I really hate to see him cry and in pain.  I am going to have to build up my gusto because I don't want him to see me cry when we go in for surgery #2.  As soon as they were done, I scooped him up and snuggled him for a few minutes.  He is such a good boy and always stops crying right away.  He just amazes me.
We were excited to see Dr. V again since he knew us from the first surgery.  Once again, Sullivan is astounding doctors.  We started nailing down a for sure date for surgery #2 and it is looking like mid to end of May.  We are going to go down on a Thursday to have a CT scan and pre op, then Sully and I will stay overnight in the hospital and he will have the surgery Friday morning.  They will have to re-crack his chest, but since he is growing up such a healthy boy, it looks like they can put the 12mm conduit in and that way, he won't need surgery #3 until he is between 7-13 years old; as opposed to 3 or 4 years old like we previously thought if they had to put in a smaller conduit. 
This appointment went amazingly well.  Dr. V quelled some of my anxiety.  I put up a very good front sometimes, but to be honest, I live in constant fear.  The shunt is has is just a temporary fix and we have to do so many things to make sure it works properly.  Sully is on aspirin, we have to check his O2s multiple times a day, he sees the doctor like every three weeks... it is tiring.  It is basically like living in limbo.  We're holding our breath until this big hurdle is cleared.  It was comforting to know that after this surgery, Sullivan will just be a normal kid!  He will have no restrictions. He can play sports and run and jump and do everything that everyone else does.  In fact, no one will be able to tell that Sully has a heart condition unless he tells anyone.
We spent the rest of the day getting an oil change and snuggling and cooking enchiladas for Robert. 
Look at my little chef:

Master Chef Sully James!

Also, some of you may think this is mean, but Sully has about a million expressions and when I told him we had to go to get a chest xray yesterday, this was the face he gave me:

My poor little buddy!  But how adorable is he!?

Have a good evening ladies and keep Mo in your prayers!

CourtneyAnna and Sully James

Sunday, February 12, 2012

Just snoozing..

I'm trying out my mobile blogging & picture app so, here he is, snoozing at breakfast after our first overnight trip!
Gosh, he is adorable.

Thursday, February 9, 2012

Dealing with a low supply

Me and my pump.  Frenemies for the next none months.  I am adamant about Sullivan not going to back to any formula, (he had to have his breast milk fortified when we first got home and I was not happy about that.)
Sully has stopped latching and breast feeding at all so I am pumping 10 times a day, and still dealing with a low supply.  There are some times were I pump a full bottle's worth, about 4oz, and other times, I only get a half ounce out of each breast.  Now with Sully in daycare, I need to send 20 oz worth, and I am so worried that I am not going to have enough.  I have blown through my freezer stockpile and I now only have what I am pumping every day.  I really don't want him to drink formula and he doesn't care for it any way, so I have started looking at other ways to build up my supply.  Pumping more than the ten times a day I am already doing is just not an option.

I called the lactation consultant at Children's yesterday, and she suggested I start taking a Fenugreek supplement.  It is an herb that helps build up milk supply in lactating women.  I have to take three of these giant horse pills three times a day.  They make me super gassy.  I know it is probably a TMI, but I have had to leave my office and retreat to the bathroom to, ahem, relieve myself.  So far, I have pumped three times since coming to work and I have about 6 oz pumped.  I was hoping I would see more, but I have only been taking the Fenugreek for 12 hours and they said it would take 24-72 to see results.  Has anyone else tried this stuff?  I may try an get a manual pump to try too because I heard they stimulate a little better than the electric ones. 

Everyone keeps telling me and I am doing such a good job, and that keeping up a supply with just a pump is hard and doing it this long is awesome, but I am not willing to give it up yet.  Breast milk is so much better for babies, especially Sully when he needs to heal from surgery.   I am hoping this all works so I can up my supply!  Keep your fingers crossed!


Monday, February 6, 2012

I did not want to get out of bed today


I can't believe Monday has come already.  Ugh.  This is one of those days when I could have stayed in bed and slept for hours more.  I was really comfy and Sully was still sound asleep when my alarm went off this morning.  I basically used every ounce of energy I had to stay awake in the shower. Lame.
Sullivan was kind of a bear last night.  His cardiac nurse came over on Saturday to listen to his shunt and give him his monthly RSV Synagis shot.  I was glad he was having it Saturday because he is also a little sore and needy after his shot and we had Super Bowl plans.  Well, thanks to the Walgreens Infusion Center's screw up, they sent me the needles and the epi, but no actual Synagis!  So I had to call down to Roseville, and they had to make an immediate delivery because he has to get it 30 days from the last shot and Saturday was Day 29.  The lady that I spoke to down there was a complete douche canoe and kept telling me how he could wait until Monday or Tuesday and that it wasn't a big deal.  Sadly for her, I forcefully let her know that Sully was a 12 week old cardiac patient and that the Synagis better be in my hands or else. Besides, those shots are $1600 a shot!  It's not like I am paying pennies for it!
Because the Synagis was late, he got his injection yesterday and he was not a happy camper!  On a good note, he is continuing to gain weight and he is up to a hefty 11lbs 5oz! He is my little snuggle bear.
We did have an awesome Sunday though; ya know, before the shot.... haha
We went to Target and the mall. It is so hard not to spoil Sully when we go shopping and yesterday, I didn't hold back.  I got him the cutest Minnesota Wild outfit, and new jeans and jammies and shirts.  We swung into Barnes & Noble and got some new books.  This boy loves to read!  He is especially fond of Clifford.  He just gives me a big, gummy smile when he hears, "Hi.  I'm Emily Elizabeth.  And this is my dog Clifford."

After his shot, we went to T & M's to watch the Super Bowl.  I tried a new spinach dip recipe and it was an epic fail.  It was flavorless and I was bummed.  M made these buffalo chicken bites that were really tasty though!  Sully was kind of a fuss pants most of the night but he and baby Lily were so cute together!  She will be a year old next month and she was so excited to see Sullivan that she kept want to sit right on him and give him big hugs.  It was adorable.  We also asked T & M to be Sullivan's godparents.  I was really excited about that.  They are our best friends and have been so helpful and supportive to us.  I can't wait for his baptism in April and have them stand up for him. :-)

I leave you with a few cute pics:

"Whatchu talkin' to me?"

Mr. Happy Pants in the morning!

Have a good week!


Friday, February 3, 2012

Back on the grind

Well, I am back at work.  And I am not thrilled about it.

Originally, we thought Sully's surgeries were going to be close together so I had decided to stay out until after surgery #2.  Luckily, he is doing so well that they are able to space the surgeries out more.  So, here I sit.

We had an appointment with the cardiologist ion Jan 24th.  Sully had an echocardiogram and an EKG.  He was not a happy about having to spend most of these tests only in his diaper. :-(  This boy really hates to be naked. Dr. V said he is still looking so amazing.  The echo showed awesome flow through his shunt.  It was always our hope that Sully would be able to make it to 7 months old before the next surgery because that is ideal, and Dr. V said we could!  Surgery #2 will be in May.  We think it will be scheduled at our next cardio appointment on Feb. 21.

So, back to my hysteria.  I originally started writing this post on Wednesday, which was my first day back, but after being out of work for the better part of three months, I got SUPER busy.
Let me tell you this though, dropping Sully off at daycare was quite possibly the hardest thing I have ever done. I didn't even bother with make up and my hair was a wreck.  I kept the tears at bay because I didn't want Sully to get freaked out.  I want him to enjoy spending time with his new friends. We got into Molly's house and she was very excited to have him there.  He looked content as I handed him to Molly.  I gave him about a zillion kisses and after many, many last minute things I relayed to her (even though I said them about 10 times) I walked out the door.... and promptly lost it.  I literally sobbed so hard I gagged.  On the verge of a panic attack, I slide into the passenger seat and Robert and I left for the office.  I broke out in hives and just cried.  I had snuck one of his blankets into my purse and I just held it and smelled it all the way to the office.  I am sure some of you think that is creepy, but just wait... you will do it too.
I made it about 45 minutes before I texted Molly.  Her response was an adorable picture of Sully sitting in her lap and smiling.  It made my morning.  Luckily, I was swamped at work and the day FLEW by.  The second that the clock hit 4:30, I launched myself out the door and basically sprinted to my car.  Traffic was crawling.  When I got to Molly's, I all but knocked over another parent trying to get to the door.  Sully James was snoozing in Molly's arms when I arrived.  I was hoping he would be awake and excited to see me.  When we got home though, he woke up and gave me the biggest smile as if to say, "Well hey there Mama!" I spent the rest of the evening snuggling him and kissing his cheeks.

These past two mornings of dropping him off have been way easier!  I didn't bring his blanket today and I have been more at ease.  I know Molly is doing an amazing job and that Sully will have wonderful little friends to play with. Pumping at work is a hassle but I refuse to give him formula unless it is absolutely necessary. I am glad it is Friday so I can spend the weekend with my favorite little fella!  I can't wait to snuggle him tonight!

I will end this post with a few more pics of the most beautiful, amazing boy ever!

Mr. Handsome!

He has our wedding rings on his toes... but he didn't really like being in that sling.. as you can tell by his face! Hahah!

I love that the blocks spell out "MIRACLE." :-)

Sully's "Whaaaaaat?" face!

I am OBSESSED with his bomber hat!

My face is funny and he looks like he is gonna eat my nose...

His Calvin Klein modeling pose!  And his scar is barely visible here!

Snuggling after the first day of daycare!

Smiling and waving!

Have a good weekend ladies! 

Courtney and Sullivan