Wednesday, April 29, 2009

3 Months



I can't believe Cain is already 3 months old!!! I'm sure you will hear me say the same words every month but it really is going by too fast. Every parent I talk to says that babies grow up too fast and they aren't lying!

What is Cain doing at 3 months?
-Takes a 4 oz. bottle of breast milk fortified with formula every 3 hours
-No longer has his feeding tube
-Goes to bed at 8pm every night and wakes up once during the night to feed
-Wakes up for the day at 6am every morning (I wish it was later!)
-Smiles at us
-watches our mouth when we ooh and goo and will say it back to us
-Getting much better at head control
-Likes to look at his hands
-Loves kicking his feet in his bouncy chair and when laying on his play mat
-Enjoys hitting his toys on his bouncy chair

-Turns his head to watch someone walk out of a room





Tuesday, April 28, 2009

Our weekend

What a wonderful weekend it was for my parents (and for us)! They were in town to spoil Cain! They traveled up from Louisiana with their best friends, Mr. Robby and Mrs. Betty. Mr. Robby was in town to run in the Country Music Marathon. Maybe next year I can attempt to run (or most likely walk) in the marathon. I think it would be fun to have a team running to honor Cain and other Hypoplastic Right Heart babies.


Mr. Robby showing off his medal. What an accomplishment. We were all so proud of him!

It was beautiful in Nashville on Saturday so we took advantage of having “babysitters” in town. We left Cain with my parents and we took our boat to the river. Hopefully, we will be able to have Cain out in the boat with us next summer.


Sadie loves going in the boat so we took her with us. She loves Cain but I think she enjoyed it being just the 3 of us and getting all the attention.


This used to be Alan Jackson's river house. We heard that Kenny Chesney owns it now. Not sure if that is true or not. I looked as we passed but didn't see him!


I really think Sadie thinks she is a person and not a dog some of the time. So spoiled!

We had a good time on the river but of course it felt strange without Cain. I'm not too sure he missed us though. I think he enjoyed being spoiled by my parents.


My mom with Cain. How many LSU outfits can one little baby have?


We caught Cain sucking his thumb for the first time. By the look he gave me...I don't think he appreciated me taking a picture of it.


My parents with Mr. Robby and Mrs. Betty before heading back to Louisiana. I think Cain wanted to look at the camera too but his big fat chin got in the way!

As always, we hated to see everyone leave. We love it when we have family and friends in town.

Friday, April 24, 2009

June 5, 2009

Big news…surgery is scheduled! We found out today that Cain’s next heart surgery (the Glenn operation) is scheduled for June 5th. That is only 6 weeks from today. I can’t believe we finally have a date set. Oh, the emotions I have right now. Mostly, I am scared to death. Yet at the same time, I know this gets us one step closer to Cain’s final surgery.

We were told that Cain would have a pre-op appointment the day before surgery. The appointment should last several hours and we are supposed to talk with his surgeon at that time.

They also mentioned that we can donate blood for Cain. Cain’s blood type is O+ so anyone with O+ or O- blood can donate blood on his behalf if interested. I will get more information regarding this at a later date. We were told they like the blood to be really fresh so anyone willing to donate would need to do so 4-7 days before his surgery date. I’m so happy to know this is a possibility this time.

I remember looking at the blood Cain was receiving during his last two blood transfusions and thinking….WOW…a complete stranger is helping save Cain’s life right now. I would love to be able to meet that person and give him or her a HUGE hug.

In a later post I will describe exactly what will be done during Cain’s next surgery and give more information regarding donating blood.





Tuesday, April 21, 2009

Smiles for Daddy

Brad had a GREAT greeting when he came home from work yesterday. I was sitting in Cain's room with Cain in my lap and when he saw his Daddy he smiled SO big. It was cute to see Cain recognize his Daddy and see how happy he was to see him. Of course Brad told Cain he now expects the same greeting everyday!


I wish I could have taken a picture of his HUGE grin. This was Cain still smiling at his Daddy by the time I could get a picture of it. Too cute!!

A Day full of Dinners

I had a great Saturday! Brad kept Cain Saturday morning so I could go to a place called The Dinner A'fare. I went with my new neighbor who has twins that are a month older than Cain. We both needed a quick and easy way to cook dinner and I think we found it. This place is a kitchen with meal prep stations that has everything pre-sliced, diced, chopped, etc. We each made 6 meals that we were able to take home, put in our freezer, and cook when we are ready. I cooked my first meal last night and it was delicious. It was ready for us to eat in the time it took Brad to feed Cain his last bottle of the day. Whoever came up with this idea is brilliant!

Inside The Dinner A'fare

Ha! I guess this is what I would have looked like if I had ever worked as a cook in a restaurant. This is the two of us preparing one of our meals at our meal station. We were adding our ingredients to the meat inside the ziplock freezer bag. Don't you love our apron, hat, and gloves!

The finished product. Our meals ready to take home. Like I said...brilliant idea. Especially for new moms with little time to cook!

After a morning of preparing dinners, I came home to get ready to go out to dinner. That's right...I had a date night...babysitter and all! It took alot to get us out. It's not often that you are having to look for a babysitter who knows CPR. We had been told during our CPR training that anyone watching Cain should know CPR. Thankfully we found a great girl that works at Vanderbilt Children's Hospital to keep Cain.


Cain's very 1st babysitter. She was super sweet and great with Cain. Look at how Cain is looking at her. I think he may have a crush!

We went out to dinner to celebrate our very good friend Benson's 35th birthday. We had a great night out and I think we did very good for our first time leaving Cain at home with a babysitter.


Happy Birthday Benson


A great dinner with great friends

Friday, April 17, 2009

Great news!

We found out today from Cain’s cardiologist that we will be able to hold off on Cain’s next surgery until he is 4 months old. We are so happy to have more growing time!! Speaking of growing…this little guy is growing too fast. I wish time could stop so we could have more time to enjoy him being a little tiny baby. Today he weighed 12lbs. 4oz. Can you believe it? Dr. Liske mentioned lowering the calories in his feeds but decided to wait a little longer before we do that. We will receive a call from scheduling within the next few days. At that point, we will know the exact date for Cain’s next surgery. Until then, we will continue to go in for weekly cardiology appointments.

Cain had another EKG today. I have a picture of Cain having an EKG last month. I thought I would put them together to see how much he has grown.

picture taken on March 16th

Picture from today! Wow he's grown in 4 weeks.

Thursday, April 16, 2009

Happy Baby

Thankfully there has not been much to report on this week. With Cain...no news is typically good news! We do have an appointment tomorrow morning with Cain's cardiologist. I assume we will discuss Cain's next surgery during this appointment. After Cain's blood transfusion his sat's have been staying in an acceptable range so we are hoping his cardiologist will tell us we can hold off on his next surgery a little longer. That would be great news.

Here are a few of my favorite pics from the week and a video of Cain playing.


Happy baby


Even happier baby

video

Having fun during playtime

Sunday, April 12, 2009

Cain's 1st Easter

Happy 1st Easter to our sweet baby boy! What a wonderful Easter it was!! Our good friends Brian and Monica drove up from Louisiana to spend the weekend with us. It was so good to have them here to meet Cain and celebrate Cain's 1st Easter. They arrived Friday night with our favorite pizza and breadsticks from home. It was delicious!!

Since Cain remains on "house arrest", we relaxed all weekend at home . On Sunday, the boys stayed home with Cain so Monica and I could go to church. After church we all had a great home-cooked meal together before they had to return to Louisiana. We hated to see them leave.

It looks like the Easter Bunny found Cain's house!

Cain's cute Easter outfit had a bunny tail.

Of course Sadie couldn't be left out...the Easter bunny brought her a new bone and a new toy.

The boys worn out from all the Easter festivities.

Cain snoozing with some of his Easter goodies.

Overall, our Easter was perfect. The only way it could have been any better would have been to have ALL of our friends and ALL of our family here in Nashville with us.

Friday, April 10, 2009

Good Friday Dr. Appointments

Today was a day full of Dr’s appointments. This morning we had a follow-up appointment with Cain’s cardiologist and then in the afternoon we had Cain’s two month check-up. Thankfully, both appointments turned out great! We should know more about Cain's Glenn surgery next Friday after his case has been discussed at the weekly cardiology heart cath conference.


Cain did great at his appointment. He actually slept the whole time. I guess he is getting pretty used to having his blood pressure, sat's, heart and lungs checked!

Next came the two month check-up appointment with his pediatrician. Cain is now 22 1/2 inches long and 11lb 8oz!!!! He's getting to be a big boy! He also received more of his vaccines at this appointment. The poor little guy just can't get away from having to have needles poked in him.

Waiting to see the Dr.

As you can see...Cain did not enjoy getting his vaccinations.
Happy again after his shots.

Okay mom...let's go! I'm tired of all these Dr's appointments today.

Wednesday, April 8, 2009

Prayers for a Heart Friend

Sorry for the lack of blogs this week. Thankfully it has been a quite week since we’ve been home from the hospital. Cain seems to be doing well and his sat’s are staying in an acceptable range. We have two Dr’s appointments on Friday and another appointment with his cardiologist next week. I feel we will know more about his next surgery after our appointment next week.

Most importantly, one of Cain’s new “heart buddies” could really use your prayers right now. His name is Reed and he was born with Hypoplastic Left Heart. After his birth it was determined that a heart transplant was a better option than the 3 stage Norwood procedure. In January he received his new heart and after a 100 day hospital stay he was finally able to go home. Reed had been doing great at home but this past Sunday morning he had to be rushed to the ER. His moms blog (www.keeleyandryan.blogspot.com) stated that he had blood on his brain that needed to be drained off so they had to drill a couple of holes on his head that night to relieve all of this blood off his brain. By Monday morning, he was awake and doing well except his eyes were not tracking. They do not know the reason for this but the doctors seem to think he just needs time. He does have some blood in the back of his eyes which could be causing him to not focus. As you can see they could really use your prayers and support. I met Reed’s parents while Cain was at Vanderbilt. I hate so much that they have to go through this right now. I know they must be scared and exhausted. Reed is actually a twin. I personally know how hard it is to care for one baby in the hospital. I can’t imagine how hard it must be to take care of a baby in the hospital and a baby at home. There are many parents out there that have to do this and they all amaze me.

Sunday, April 5, 2009

Home from "Vanderbilt Resort"

We are finally home from what Brad likes to call “Vanderbilt Resort" because we keep taking mini vacations there. The plan had been for Cain to be kept Friday night for observation; however, we ended up staying the whole weekend. We are learning that plans can not be made with a “heart baby”.

Cain received a blood transfusion on Friday which they hoped would help raise his O2 saturations. Unfortunately, this did not work. We had a very stressful 36 hours…and I mean STRESSFUL! Cain was very irritable all night and morning. We were lucky if he slept for 20 minutes at a time. Otherwise, he was awake and crying. During this time his saturations ranged in the 50’s & 60’s. They placed Cain on oxygen but this also did not help. Since his oxygen sats were getting so low there had been talks of needing to proceed with Cain’s next surgery.

By midday Saturday it was determined that Cain needed a second blood transfusion. Thankfully, this (along with Lasix) must have been exactly what Cain needed. Cain’s sat’s began to increase and eventually stabilized in an acceptable range.

We were discharged today, but if Cain’s saturations drop again it is a good chance we will end up back at “Vanderbilt Resort” and they will elect to perform Cain’s 2nd surgery much sooner than originally expected. Hopefully, this short stay has bought us a few weeks and will allow Cain to grow a little more and continue to get stronger for his Glenn Operation.


Finally in a room on Friday after his heart cath.


It's hard to tell from this picture but this was a pic of Cain when his coloring was a little blue from his oxygen sats being so low. This was right before he had his 2nd blood transfusion. You can also tell he was retaining water by the puffiness.


Receiving his blood transfusion on Saturday.


Cain finally feeling better after his sats came back up before his oxygen was removed.


Resting peacefully after his oxygen was removed.


Both of my boys resting from a long weekend at the "Vanderbilt Resort"

Friday, April 3, 2009

Cardiac Cath Update

Great news! We just met with the Dr. who performed Cain’s heart cath. We were told that everything went great. Cain is currently in recovery and we are waiting to see him.

Cain’s shunt looks good and they will not need to place a stent at this time. However, they found that he is anemic. Babies produce a certain type of prenatal hemoglobin while in the womb. After they are born, they begin to produce a post birth, more mature type of hemoglobin. During this process, all babies tend to develop anemia while the old hemoglobin productions slows and the new mature hemoglobin production ramps up. Unfortunately, cardiac babies can’t always cope with this transition as easily as normal infants because it affects their O2 saturations (which as you know from previous posts, is a critical balancing act for cardiac babies.) They will give him a blood transfusion to see if his saturation levels will balance out.

Additionally, they found some additional blood vessels that may continue to mix oxygenated blood with un-oxygenated blood even after his Glenn operation. While this is not common, it is not terribly uncommon either. They will address this, as needed, after his 2nd surgery. If necessary, they will close off these additional vessels through the use of additional heart catherizations. But we will just cross that bridge when get to it…..

Overall everything looks good, but we will wait for the final report from the cardiology group’s collective opinion regarding Cain’s case after they have had a chance to look at all of the cath results and analysis the various pulmonary pressures.

Update since we started typing this blog:

We are now back with Cain. He is resting peacefully and he has already received his blood transfusion. We also had a chance to talk with Cain’s cardiologist. He is hoping that it will be possible to hold off on Cain’s Glenn operation for a few more weeks. If his oxygen levels still don’t level out then we may not be able to wait as long as we would like.

When we were getting Cain ready for his cath this morning a nurse said he was bringing us clothes and socks to put on Cain. These were the socks he brought. Not sure those were necessary. We had to put them on him as a joke!

Cain all bundled up...trying to stay warm as he receives his blood transfusion.


As always, thank you all for praying for us today. As you can see...prayers were answered!

Thursday, April 2, 2009

Heart Cath Scheduled for Tomorrow

I received a call from Vanderbilt yesterday morning informing us that Cain is scheduled to have his heart cath Friday morning at 6:30a.m. Actually we are to be at Children’s at 6:30 and I was told the procedure should start around 7:30-8:00. We should expect for it to take an hour and a half to two hours. During this heart cath they will be able to get a much better look at Cain’s shunt. They will look to see whether they can “buy” some more time before Cain needs the Glenn operation by ballooning or stenting his shunt. Just like they did during Cain’s first operation, nurses will call out to us every ½ hour to let us know what is going on at that time. I really like that they do this otherwise it would make the wait excruciating. We were told we should expect to spend Friday night in the hospital and then if everything looks good we would be able to go home on Saturday. She also said that if they decide it is time for Cain’s Glenn operation then they would probably just keep him in the hospital and get us on the OR schedule for surgery next week. I pray that this is not the case. We would really like for Cain to have a little more growing time before he has to undergo this complex surgery.

Like I mentioned before, it’s wonderful that Cain is growing so well but at the same time as he grows it causes his shunt to narrow. Because of the narrowing of the shunt, Cain’s cardiologist worries that he may not be receiving adequate blood flow to his lungs thus causing his saturations to drop. If they can balloon the shunt during the cath this would hopefully restore adequate blood flow to Cain’s lungs.

As you can see Cain doesn’t seem to let any of this bother him….
I guess he's relaxing telling us to relax too because everything is going to be okay.

Wednesday, April 1, 2009

Pre-Glenn Catheterization

Yesterday turned out to be a long day! I heard the news that I wasn’t ready to hear yet. It has been determined by Cain’s pediatric cardiologist that he will have his Pre-Glenn Catheterization done within the next two weeks. Cain’s case will be presented to the Cath team and then scheduling will call us with the date the procedure will take place. Cain had an x-ray and echo done today. But this heart catheterization will get a better look at his shunt that was put in during his first heart surgery. The heart cath will help determine how soon his next surgery may need to take place.

His next surgery is called the Glenn operation. This surgery is typically performed between 4-6 months of age. We were told today based on Cain’s heart cath and if his saturation levels continue to decline he may need to have this surgery sooner than we thought. This is the news I was afraid I was going to hear.

As scary as all this sounds, we were told that Cain looks great. Actually, today Cain weighed 10lbs 7oz. and is now 23 inches long. A lot of times heart babies like Cain struggle to gain weight. Thankfully, Cain is growing but at the same time he may be outgrowing his shunt. As Cain is growing so is his heart. However, the Gore-Tex shunt that was put in during his 1st surgery remains the same size. Therefore, the shunt starts to not be able to provide Cain with the oxygen he currently needs thus causing his sats to decline.

On a much better note, we were told today that Cain’s feeding tube could be removed. This was such exciting news for us! We removed it as soon as we got home. This was the first time we have seen Cain’s entire face with nothing taped to it since he was born. Even right after he was born I didn’t see him until he had his breathing tube in. I felt like I was looking at a new baby without the tube and tape!!

As you can imagine I’m a bit stressed and nervous after hearing the news that we may have Cain’s next surgery sooner than we thought. But I know Cain will continue to be strong and each procedure gets us closer to what we hope will be Cain’s final surgery.

Now for the part you’ve been waiting for…the pictures….


Cain getting his x-ray with both of us dressed in our protective shields. I feel like with the stars behind my head...we look like we are doing something with NASA.


Cain having his Echocardiogram.


Cain did great during his Echo and never cried. He actually just stared at the Echo tech with a very intense stare. She kept laughing saying he was distracting her with his stare.


I guess Cain has had so many Echo's that he now finds them relaxing. He fell asleep while they were reading the Echo results.

And last but not least!!! The exciting pictures! The before and after shot....


Before feeding tube was removed...


And after the feeding tube was removed. Cain says.."Ah, that feels nice."