Sunday, August 31, 2008

My surgery

I talked to Dr. Hanley on Friday. I asked him if I could recover on the adult/Stanford side if there were no beds for me in the CVICU. He thought about it, and said yes. He would prefer me to recover on the children's side because of my heart condition, but he will also feel comfortable w/ the adult side if we had to. He said my chances of having surgery rescheduled are very slim. That was nice. It also makes me realize that it's probably going to happen this Friday, and I am starting to get a little nervous now. I also got sad today. I'm wearing a tank top, and kinda low cut. I just realized that after my surgery, I will never look the same. I know, I know, I have to get this done, and beauty is from the inside, but it will be different. My old scars are on my left side, so only a bathing suit will show those. I've always been so grateful for not having scars in the front. Oh well, whatever! Just venting. My mom will be giving Andrea, from my support group updates and pictures. Andrea has offered to update my blog while I'm in the hospital. That's nice of her. My mom doesn't know anything about blogs.

Baby Ross is doing great. He doesn't appear to be sick. =)

That's it for now!

Kira

Thursday, August 28, 2008

I'm so glad I took him!

Today, baby Ross was not feeling so good. Luckily, the antibiotics are in his system, and will do the job. He took 3 long naps today, which is different. All three times, the pillow was soaked with sweat, and his back. Maybe that's his way of fighting the infection. Now, I'm starting to wonder HOW he got this!!! He hasn't been sick, or runny nose, or fever. He is never exposed to sick people, unless they lie =(. But, for the most part, he is pretty sheltered, to an extent =). He still has an appetite!

Ok, he's getting fussy =(

First trip to the E.R.

Yesterday, I had a "feeling" that something was different about baby Ross. He was tired after taking a nap, and yawned a lot. He was a little fussy, and something just told me that I should take him in. I called Valarie, for her advice. She called her husband who is a nurse at Sutter Memorial. He suggested taking him to the E.R. I'm glad he did. When we were there, the baby was laughing, smiling, kicking, acting normal, so I was feeling really stupid. Big Ross was kinda giving me a look like, "why are we here, he's fine." So, that didn't help my feelings of stupidity. When the doctor came in, little Ross was laughing...Anyway, he got an xray, which was HORRIBLE!!! I hate how they do xrays there. The tech had him sit in this weird thing, with his feet dangling, and then this plastic thing holding him in with his hands straight up in the air. His face was smashed in, and I had to hold his arms up. He was screaming, crying, looking at me with those sad eyes. It was awful. Again, I don't like how they do xrays there, and he will never have it done like that again. Stanford just has them laying on the bed.

So, hours later, no word. I asked the nurse if the doctor looked at the xrays yet, because his meds were already late, and I didn't bring them. He said "yeah, he just looked at them, and he said he's gonna think about what to do." That didn't sound very good. The doctor came in and told us he has a "questionable" right side pneumonia. He prescribed antibiotics, and told us to come back if he has trouble breathing, or runs a fever. He consulted w/ Dr. Juris, who was on call. He was OK with that. The E.R. doctor said if he was heart healthy, he would just send us home, and keep an eye on it. Since he has a complex heart condition, they have to be aggressive. I'm happy about that.

I'm so glad he was seen, because pneumonia can get life threatening, and left untreated with his condition is just asking for a hospitalization!!! We DON'T need that!

We got home after midnight, and we're doing good today. I called Dr. Wright, his cardiologist. We will get another xray Tuesday, and hand carry the film to his office, and that way he is seen right before we head off to Stanford. He also has an appt. with the pediatricians office in the morning, recommended by the E.R. doctor.

That's about it!

Monday, August 25, 2008

Good report from cardiologist!

Baby Ross had his one month follow up w/ Dr. Wright last week, and I forgot to post. Dr. Wright needed his new medication info, and I left it in the car. He said he would watch the baby (we're in the exam room). I came back from the car, and they weren't in the room. I went in the echo room to see the cutest thing. Dr. Wright was sitting on the little bed (for kids), holding the baby as the tech performed an echo. It was so cute!!! He said that was the highlight of his day, and now he knows what parents feel like having to keep the baby still.... =) Ross was being good, like always, but he still had to keep him still. I asked if he wanted me to take the baby, and he said no. It was pretty cool standing right behind the echo machine, to see a close up of his heart. After that, he handed the baby off to me, and we went back to the exam room, where baby Ross decided to take a very STINKY poop. He always does this at the doctor's office.

Anyway, everything looks good, and Dr. Wright is very impressed w/ baby Ross. =)

My surgery is coming up, September 5, in Stanford. I should be there 5-7 days. My mom said she would update the blog, and post pictures. I'm going to let her take pictures of me right after surgery, and post them. I'm sure it will be different seeing a heart mom be the patient! =) I'll let you know what it was like.

Here are some recent pictures. Baby Ross is developing so quickly! He's trying really really hard to sit up on his own. His back muscles are really strong. He is eating baby food (when he really wants to). So far, it's a hit or miss if he'll eat it. He loves his bottles a lot. He is doing really good on his tummy. He holds his head up high, and now he just wants to move. He loves to kick his legs all the time. SO active~and such a good baby. He only fusses when he's hungry or tired. I think he's getting a tooth pretty soon. There is drool EVERYWHERE!!! It runs down my arm when i hold him, he loves to chew on my fingers (and his), so I think it's a sign. I'm new at this stuff, but I think I feel a little swelling on the front bottom gum line. He will be 6 months September 5. =) He's growing so fast.


DROOL, everywhere...never stops!!!


The shirt had to come off...

Tuesday, August 19, 2008

Grandma Lou and Grandpa Ross' house

They got him a swing, and he loves it..


video

Monday, August 11, 2008

Pictures




proud grandparents

Here are some recent pictures of baby Ross being home. He is doing great, and Dr. Warden said his color is amazing. He doesn't hear a murmur, and also told me if he didn't have all the scars, he wouldn't think anything is wrong with him...even listening to his heart! Now, this is the pediatrician, not a cardiologist, but still good to hear.

We saw Dr. Warden because the baby's eye was looking infected. He was also born w/ clogged tear ducts. This happens to 5-10% of babies. His right eye is better, but the left eye is still blocked. This caused a secondary infection. Not pink eye. So, we have eye drops, and we need to massage his eye area at every diaper change. It's not a big deal, and should resolve by 9 months. His eye looks a lot better this morning.

Tuesday, August 5, 2008

I was holding back tears, but I did get goosebumps...

When Ross and I were in Stanford, at the Ronald McDonald house in Feburary, waiting for little Ross, we saw an amazing little boy.  His name is Shawn.  I knew all about him through a fellow heart mom.  He was born with HLHS, and he is 7 or 8 years old?   He had all three surgeries, but developed complications, and I'm sorry I don't know what it was right now.  I will find out.  I remember seeing him every night playing w/ friends, playing bingo, and trying hard to make life easy.  Him and his family are from Alaska.  He was there waiting for a heart transplant.  When I was there, he had already been at the Ronald House for over a year.  Today marks 2 years, 4 months, until July 31, 2008, they got the call at midnight that he got a heart!!!  They received a similiar call months ago, but turned out the heart had issues, so they wouldn't transplant it.  That was so devestating, I can imagine.  But, this time, he really got the heart, and I wanted to share this w/ everyone.  He has been on the Alaska news twice, and here is the most recent news clipping, showing him after his heart transplant.  I was trying REALLY hard not to cry, because I know I wouldn't be able to sleep, but I did get chills, and bumps on my arms.  This is such a miracle for this family, and I can only imagine going two years waiting for a heart.  


http://www.ktuu.com/global/video/popup/pop_playerLaunch.asp?vt1=v&clipFormat=flv&clipId1=2758073&at1=Video%20Player&h1=Eagle%20River%20boy%20gets%20new%20hear