Live Love Laugh: June 2011

I have been such a TERRIBLE blogger! Oh my goodness, so many things have happened.

Callum is now 6 months old and I can't believe it! The time has gone by so quickly... makes me happy and sad at the same time. Happy because it has been so fun to watch him grow and learn, and sad because I want him to stay little. Ah well, life goes on so I will enjoy every minute of it!

Some things that have happened in the last couple of months:

*Callum had a sedated Echo-cardiogram on May 18 to check the repairs in his little heart. They mostly wanted to check his Aortic Arch Repair to make sure that there was no scarring that could cause an obstruction in blood flow, but they also wanted to check his conduit, blood pressure, and valves. His valves looked really good, the conduit valve was a little leaky but that was not unexpected (the conduit is not living tissue, so the valve wears out quickly; this will not cause him problems though) and his truncal valve, which can be a big problem, looked like it should. His Aortic Arch also looked really good with very little scarring so they are not worried about that.

There were only two concerns, and one was just something unusual that the cardiologist had never seen before... definitely something we liked to hear.

The first concern was that his Right Pulmonary Artery, connected to his conduit, was narrow and the Cardiologist was worried about the blood flow to his lungs. He was able to check the blood pressure with the Echo, which looked okay, but he could not see actual blood flow. So they scheduled him for an MRI so they could see the flow to each lung.

So the concern with this is that your Right Lung is bigger than your Left Lung and therefore your Right Lung should be getting about 60% of the blood flow and your Left Lung should be getting about 40% of the blood flow; at least this is what is typical in a normal heart. So Dr. Williams (Callum's Cardiologist) told us that if the blood flow was about 50/50 he would leave it alone and we would just continue to monitor it, but if was anything different (he suspected it would be) we would need to have a stent placed in that Right Pulmonary Artery to widen it.

The second concern was this----in every heart there is a little appendage off the Left Atrium of the heart, and no one knows what its purpose is, or was in the past. It is like your appendix, it is just sort of there. So in normal hearts when your heart pumps, blood will just kind of flow in and out of this little appendage, but in Callum's Heart it SHOOTS out! It actually has blood pressure. Dr. Williams had never seen anything like it; he said it was not a concern, just something strange. He said he even asked his colleagues and Callum's surgeon to see if they had any ideas, and none of them had heard of this before. So that is interesting. We still don't know what is going on, but they will tell us if it is something we need to be worried about.

Note: So they had to sedate him for the Echo (super fun since he couldn't eat in the morning; very hungry cranky baby), and they did that by giving him an IV and then giving him some sedation medication. They gave him some toy keys, which he loves, and then let him just sit on my lap. It was pretty funny, one minute he was playing and rattling away, the next he was totally relaxed and just starting off into space. He is so cute. When he woke up, he SCREAMED until we gave him food. He is not a good eater a lot of the time, but we could not give him enough.

One more funny thing-when they took his IV out they put a big Yellow Crayon Band-Aid on his hand, and he was still loopy from the drugs so he would catch sight of it and it mesmerized him! He would stare at it and then rotate his hand front to back so he could see it. So funny.

*Callum was scheduled for an MRI on June 15 so they could check the blood flow in his lungs. For this he had to have General Anesthesia. I hate it when the have to put him under... it is so sad. He is just so little, and it just makes him look smaller and more helpless. It breaks my heart. But it is better than him having major issues later, so all is well!

So he could not eat again for a long time (the last time he eats at night is about 7:30pm, he goes to bed at 8:00pm and he sleeps until 7:00am. He will NOT eat if I wake him up in the middle of the night, so even though he could eat until 3:00am, he ate at 7:30pm for the last time). This time was worse than for his Echo; his appointment was about 2 hours later and we had to wait a lot longer at the Hospital before they put him under and did the MRI.

Anyway, we checked-in at Same Day Surgery at Primary Children's Hospital and they took us to a prep room where they gave us some little Hospital PJ's for Callum. I put them on backwards at first, but he still looked really cute. In that room they had a plastic bag for patient belongings and he wanted to play with it. He is so funny, he is so entertained by paper and plastic that crinkles and makes noise when you touch it. It was the only thing that kept him happy while we were waiting.

Brigham and I were not allowed in the MRI room, so we just wandered around the Hospitals while we were waiting.

When Callum woke up, he was inconsolable! I could hear him screaming, and I mean SCREAMING! from the waiting room. They gave him some Pedialyte and that calmed him for a minute, but he wanted food and his mommy and he wanted them NOW! So we made him a bottle and fed him as much as he would eat, which is not as much as I think he wanted...

Side Note:

He was not eating well and was getting a wet little cough so Brigham and I were worried about him, so Brigham took him to the doctor on June 10 to see what we could do for him. Well our doctor was not in that day so they had us see another doctor. He told Brigham that his cough was fine, it was not in his lungs, but he said that he thought Callum might a food allergy to his formula so he had us try a non-milk based formula to see if that helped. He gave us a can of the Enfamil brand of this special formula and Callum would not touch it. He usually eats the Similac brand, so we went and bought Similac brand special formula and he would eat that a little better. So the little guy is fighter when it comes to eating anyway, but I started to get worried about him starving because he would not eat, and we were supposed to limit his diet to just formula and rice cereal so that we would know if it was a food allergy. Well that doctor asked Brigham to call back on Wednesday (Callum's MRI day) to see how he was doing with his new diet, and we spoke with our doctor and her nurse.... our doctor does not usually recommend diet changes, so she had us go back to his normal formula; he had his 6 month check-up on June 20 anyway so they could see if he was having issues again with the formula at that check-up. Long story short, he eats really well now.

... if he had been on his regular formula I think he would have eaten more.

So after he ate as much as he wanted, he still would not stop crying. I could tell he wanted to sleep, and he didn't feel good, but he is used to sleeping in a very dark room and it was bright, and he was naked but for a diaper and it was just not happening! and the nurse did not want to send us home until he calmed down.

This sort of annoyed me, however, because I knew that the minute we put him in his car seat and picked him up, he would have fallen asleep. Then we could have taken him home and he would have slept in his own bed. But, alas, we had to wait there while he screamed for an hour until he finally fell asleep with me holding him in a really weird position.

When he finally stopped crying they sent us home and told us we could resume his normal schedule, which he fell back into without a hitch, and that we would get the results of his MRI in a few days.

Results:

His results were just as Dr. Williams suspected: 63% of blood flow is going to his Left Lung and 37% of blood flow is going to his Right Lung. This is pretty much exactly opposite what it should be. So he now scheduled for a Catheter Stent Placement on June 30, 2011... Happy Birthday to me!

Good news is that this should be the last major undertaking for the little guy for a few years at least.

*Some fun things

Callum took his first long trip over Memorial Day weekend with Brigham and his Dad. They went to Denver for 5 days. Brigham ran the Boulder Boulder 10 K on Memorial Day with his Brother Gary and Sister-in-Law Kelly. It was an 8 hour car ride and Brigham said he did really well! He hardly ever cried (He was very entertained with a Wendy's bag... He likes crinkly paper).

While they were there, his cousins loved to play with him, and he was introduced to the piano and he really liked it! He definitely has the fingers for it so I am glad he likes it.

Callum is not entertained by much... he will smile at you, but he never laughs. So not too long ago Brigham told me that he laughed a little at the dog. He tried to get it on video but Callum, like his Dad, does not perform for the camera. Then the other day I was holding him on the couch, just chillin with him until he went to bed, and he started to make a sound I had never heard before... He was giggling! It was so cute it made me cry a little. It was the sweetest sound I had ever heard and I wish I could get him to do it more. Such a sweet little angel.

Ever since Callum has been free of the tethers (feeding tube and oxygen) he as wanted to be mobile. He has never really liked to be cradled, and likes to be held facing out so that he can see everything. When you would put him down to play, he would be happy for a bit, then he would roll onto his tummy and get stuck and then mad. He couldn't figure out how to roll back over. In the last few weeks he has gotten much more mobile, and he has been able to sit up on his own for short periods of time. He can roll back and forth, and all directions, so if he wants to he can roll to any destination. He also will pivot and turn, sometimes using his head and sometimes using his hands and feet. He is also starting get up on his hands and knees and rocking, the first step to crawling, and he can scoot. Needless to say he is SOOOOO much happier! Just being able to get around the small amount that he can has made a huge difference. He is mobile! And he is taking advantage of the fact.

One of the gifts I got for Callum was the program "My Baby Can Read." It is a DVD and book set that is supposed to help your baby learn to read by showing the word, reading it and then showing pictures of the words. Well, I am not yet sure how well it works, but Callum loves it! He is so cute, we can put him in front of it and you can see his eyes moving as they read the words, and he will talk to it and "sing" along with the songs. I am hoping that is a good sign, but even if it is not he likes it so I don't see any harm in it.

We took Callum to the Scottish Festival on June 11 and that was really fun. John bought him a kilt and I brought him to church for the first time that Sunday (June 12) and he wore it. So cute, my little Scotsman!

Callum and I went up to Bear Lake for nice relaxing weekend with Grammy, Papa and Auntie Heather. It was really nice.

That is all I can think of that has happened with my sweet little guy. I am going to have his 6 month pictures taken soon, I don't know when yet but soon.

He has been so fun the last little while, and Brigham has been able to see it all! He is so lucky. He has been staying home with him while he looks for a job and it has been so nice. I am glad that he has been able to take this time to get to know Callum. It is so good for both of them. It has been especially nice right now, I coach an age group swim team during the summers and I am really really busy and it has been wonderful not having to worry about getting Callum to and from a day care. I love them both so much! I am a lucky lucky girl :)

Here are some more pictures for your enjoyment!