Monday, May 28, 2012

Memorial Day Weekend

I hope everyone has had a great Memorial Day weekend! Ours was great, but exhausting! On Friday two of my sisters and one of my brothers in-law came to meet Jensen. Of course there was lots of hand washing but we had tons of fun playing cards and cooking out. 

Saturday was our 5 year anniversary <3 Its hard to believe its been 5 years! 
We celebrated it by loving on our sweet boy, it was our best anniversary yet! 

In honor of Memorial Day, I would like to thank all of our nation's veterans and their families. Most importantly, thank you to those that sacrificed their lives for us. It shouldn't just be one day that we pause to remember our fallen soldiers, but every day. We are so proud that our son is named after one of those heroes. Aaron was a great soldier and friend to Jeremy. Please remember his family in your prayers. You can visit the foundation in his honor here.

He really was happy to meet his aunts, it just doesn't look like it here!

He got to be tube-free for about an hour!

Sweet baby cheeks =)
This kiddo just turned 3 months old and is 14 lbs 11 oz!

I can't wait to do this picture with Jensen's cousins too!

Lovin on his mommy


Beach bod.

Thursday, May 24, 2012

June 15

June 15. It is set in stone now. We will be flying to Philly that morning and have an appointment at CHOP that afternoon. The cath will follow and then a decision will be made about the surgery. It is so hard to describe the mix of emotions Jeremy and I feel right now. Are we excited about relocating to Philadelphia again? Heck no! But, we do love CHOP. I'm excited to see all of our favorite nurses, doctors, and of course, Jensen's dream surgical team :) We are thrilled that interstage is coming to an end. We are also scared to death that for interstage to end, our baby has to go through another heart surgery.

Jensen had a cardio appointment today. Dr. Robinson actually said that Jensen is the fastest growing hypoplast that he's seen! He is very happy with his size and his heart function. But as we get closer to Stage II, his sats are now starting to fall, his pulmonary arteries are small, and he is starting to show some narrowing in his aorta. Dr. Robinson was incredibly reassuring today that Jensen is still doing great, despite the signs of nearing the Glenn. We will be keeping an extra vigilant eye on him to make sure his sats do not fall too much before we make it to CHOP. Otherwise, we might need to put Jensen on oxygen  before we go.

I've been thinking a lot about what having a second surgery entails. I think the second surgery will be easier and harder than the first. This time we know what to expect in terms of the medication, tubes, pumps, and how he will look post-op. We know how the CICU works and we now understand a lot more on rounds. You would think we are prepared in every way for the next surgery.

However, I can't get over the fact that my baby has to go through so much again. We won't be able to hold him for a while. We won't be able to see his sweet smile because of the sedation. I am going to have a very hard time letting him go back down that dreaded white hallway again. I know this surgery will save his life, but I wish he didn't have to fight so hard.

Thankfully, we have one of the most amazing teams in the country taking care of our little man. We have every confidence in them and they truly care about Jensen. We are also blessed to have so many people praying for and thinking about our heart baby. I know that will help us get through the next steps in Jensen's care :)

Saturday, May 19, 2012

Waiting on a date

Since we found out about Jensen's next cath, everything is at a standstill until we are actually on the schedule. Until I have a procedure date, I can't get insurance going, lodging, or plane tickets. Every time my phone rings I get so excited, hoping it is CHOP calling! 

Other than running around like crazy people, we've been very busy with little man. As he gets older, his lungs mature more and the pressure in his lungs will drop. His sats will also begin to trend down and all these are signs that he is almost ready for the second surgery. His sats are still great (he was even around 80 yesterday!) but I think he's telling us he's closer to needing his second surgery. He is sleeping less during the day which makes for a very cranky baby. He seems to be fussy when there's nothing wrong. He just isn't quite himself these days, not that this is medically proven, but I just "feel" like he's almost ready. While I hate for him to be a cranky pants, all this makes me happy because..... He's almost done with interstage! His lungs are doing what they are supposed to! 

A few weeks back, Jensen was given the green light for bottle feeds. We still use the NG tube for his feedings, but every few days we increase how much he eats by mouth and decrease what he get through the tube. He is doing absolutely fantastic with this! I've said it before and it still kid eats like a champ =) He is now taking 1.5 oz by mouth! We still have to give him thickened milk until we have another swallow study and confirm he is no longer aspirating. However, there is an end to the NG tube in sight! I'm hoping that by the time we go back up to CHOP, Jensen is almost completely off the tube and won't have to go back on after his surgery. Fingers are officially crossed for that!

Oh and guess who is over 14 pounds, in 6-9 month clothes and size 3 diapers!?!
 Someone is a chunky butt!

Mommy's man!

Frankie and Daphne are helping him do tummy time

Franklin oversees the fun 

He loves his daddy =)

Tuesday, May 15, 2012

Back to Philly

I haven't heard the "official" word on what Jensen's team at CHOP wants to do yet, but we did hear a timeline. Dr. Robinson has been talking to Dr. Rychik (at CHOP) and they think the cardiac cath will be scheduled in 3-4 weeks. 3-4 weeks! Today began a whole new wave of anxiety!

It seems like there is so much to do in so little time! We have to get insurance referrals going immediately, Jeremy will need orders to travel, then plane tickets, lodging, arrangements for our pups, house, cars, and probably many other things I've not even thought of yet.

Although we are incredibly worried about the next few weeks, we can't wait to put the Glenn behind us. After the second surgery, its like a whole new lifestyle. We won't have to keep him isolated from the rest of the world because he will be much more stable. (Don't worry, I'll still be buying Purell in bulk.) Our cardio appointments won't be so often. We will be able to finally relax and enjoy our son without constantly monitoring his every move. I am so looking forward to this part! Bur first there's still a few more hurdles ahead of us. Please keep us in your prayers as we (frantically) prepare for our next trip to Philadelphia.

News from our cardio appt

Today was a bit hectic. Jensen has been getting very crafty with pulling out his NG tube. He always seems to do it at the worst possible moments, like this morning at 5 am when Jeremy was rushing to get ready for work and I was hoping for another hour of sleep. That pretty much set the tone for the day ;)

For the first time, Jensen was fussy at our cardiology appt. He is normally such a happy, smiling baby, but today was just not his day. It took about 30 minutes just to get his sats! Luckily, everyone at that office is fantastic and so patient with us. Jensen was even fussy during the echo (he normally loves looking at the black and white screen) so we had to "sedate" him with some sweet-ease on his like a charm.

Although little man was a grump, they were able to get great images. Dr. Robinson saw that Jensen's pulmonary arteries are a little small and there was a small amount of narrowing in his stent (which is in his left pulmonary artery). His recommendation was to go ahead with a cath to balloon the stent (to make it larger). Once he has the cath, his docs will be able to make a better decision about when to do the surgery. They might do the cath, balloon the stent, and wait on the surgery. He said this option would give the pulmonary arteries a few more months to grow before the Glenn. The other possibility is to go ahead with the cath and then immediately do the surgery. It depends on how his vessels look and we won't know until he has the cath done.

Just FYI: a cardiac catheterization is a major procedure, similar to surgery. Risks include clots, stroke, heart attack, arrhythmias, or fluid build-up around the heart. As some of you may recall, during one of Jensen's last caths he developed a clot in an artery in his leg, that fully occluded blood flow. That means that leg can never have any procedures including: immunizations, catheterizations, IVs, even blood pressure can't be taken in that leg. As you can imagine, we do not take this lightly and will be fighting like hell to get back to CHOP so they can do the procedure. 

We aren't shocked by this news, but it is still hard to hear. We are so anxious for interstage to be over, but the only way to get out of interstage is for him to complete the Stage II repair. Another surgery seems impossible to bear. But, so far Jensen has beaten the odds many times and he has proven to be quite the little warrior. We know our little guy will do great, we just hate to have to put him through so much.

Wednesday, May 9, 2012

Getting closer to the Glenn

It has really hit us hard this week that we are very close to Jensen's next surgery. We are dreading it even more than the last (if that is possible). Jensen is just now learning how to play and he's holding his head up so well, he's showing us more of his precious personality everyday! I think that will make the Glenn a little harder than the last one :( 

This week we had an appointment with the ENT in Chapel Hill. All of our docs at UNC have been great so far, except for this one. I'm not sure who let him practice medicine, but I think my 6 year old niece could have done a better job. He was incredibly condescending to us while we were trying to explain Jensen's vocal cord paralysis and feeding routine. He especially didn't like when I told him that before he did any procedures I wanted to consult with his cardiologist. But, being the mama bear I am, he didn't get near my child until he called our cardio =) 

 If anyone is keeping score, its now Medical Professinonals: 0, Mama: 1 million 

So after all that mess, he looked at Jensen's vocal cords and saw no paralysis. This is not definitive but it is exciting news! Its one step closer to getting the NG tube out! Our plan for now is to try and set up his swallow study at CHOP while we are there for the next surgery. That way we can have his cardiac team there monitoring him for the study. I'm sure Jensen is going to do great...this boy is ready to eat! 

He is growing so much, he's 13 lbs 8 oz! He had his 2 months shots, which were hard on everyone in our house. He's getting more coordinated with his hands and pulled out his tube for the first time! So I took that opportunity to get some tube-less pictures of our little munchkin. 

Chunky monkey!

He was not excited about getting the tube put back in

My handsome boy =)

Calming him down before we drop a new tube =/

Thursday, May 3, 2012

Growing, Growing, Growing!

Jensen had cardio and pediatric appointments this week. We saw Dr. Robinson on Monday and he was amazed at how big Jensen is. My big guy is over 13 pounds now!! He gained about 2 pounds in 2 weeks! So, we have backed off on his calorie intake. He is now getting 22 cal/oz; breast milk is 20 cal/oz. That means that soon we won't have to fortify his milk anymore...yay! (That will save us so much time!)

Once again, Jensen was a perfect little angel during his echo and they got great images. His heart function is awesome and his right ventricle looks strong and is pumping well. There weren't any areas of narrowing or leakage. Dr. Robinson was so happy with his heart that he said we really didn't need to see him every two weeks. However, this crazy mama asked for appointments every two weeks just to keep my anxiety level down ;)

The pediatric appointment didn't go as well. Jensen is ok, he just had to have blood work and vaccines. I thought if we could just get both over with in the same day it would be easier for him but....I was wrong. The poor thing has cried so much today and has band-aids all over him =(  We will be keeping him dosed on Tylenol so hopefully that helps.

Jensen finally got to see his Gammy and Poppy again. They stopped by and stayed for a couple of days, they hadn't seen him since before he was discharged from CHOP. We are looking forward to taking a beach trip with them after his second surgery!

My chunky baby =)

Jensen and his Gammy and Poppy!

He's such a snuggler

Pouty face