Friday, February 25, 2011

Learning to sit!!

Oh goodness! So much learning has been happening for this little guy!
And so soon before his hemi-fontan! (I hope it doesn't put him behind)
Lil Daylen Lee no longer thinks he needs to rest his head!
AND he can now pull himself forward and can sit for a few minutes! 
He's 15 weeks right now and it seems so soon for him to be doing all this!

Wednesday, February 9, 2011

Hemi-Fontan Date

After Daylen was transferred to the PICU from his heart cath, he did quite well until night time when he needed oxygen. His oxygen-saturation levels kept dropping to the 30's and 40's after he became fussy. They were maintaining in the mid 60's all night until morning time when they were back up to mid 70's. I can't really say I was too worried about him as much as the nurses were because to me he seemed normal. As his mom of 3 months now, this fussiness is normal and he's always breathing fine to me. Never seemed short of breath, never looked blue, and his nails have always looked fine. I was worried they wouldn't let us take him home the next day like planned, especially after the nurses called in the cardiologist to come take a look at him. It really frustrates me how they track the SAT levels with these probes that are kept on by bandage. It just seems like it's never in the "right" place and his sat's are always all over the place unless he's sleeping. It worried me though because his first surgery at 1 week old came unexpectedly when his saturation levels had dropped to the 40's and they decided immediate surgery for a central shunt was best.

Other than that, he did good. He at well, not the full amount he usually ate, but there was no vomitting. He currently weighs 11 lbs and 6 oz so he's almost to the 12 lb mark that they want him at for the hemi-fontan.

His hemi fontan is scheduled for March 22 around 7:30 am. He is the first case so we won't be waiting on anyone else's surgery that day. The next 6 weeks are going to be tough for me. I don't want to hand him over so they can cut open my lil boy and mess with his lil precious tiny heart, but if i wouldn't be good for him either. :( I can just hope for the best and hope that he pulls through!

Love him!

Tuesday, February 8, 2011

Today was a good day.

Daylen had his heart cath this morning, which went really well! Our cardiologist was able to show us the videos of his heart and we got to see where and how the shunt was working! Kinda neat.

On the unfortunate side, the Dr. mentioned scheduling his hemi-fontan in 6 weeks :( that's so soon and he will be 4 1/2 months old. I knew the minute he told us that every day til the surgery, I will find myself bawling my eyes out at least once a day. It's a bummer that he has to go thru this, but if he didn't he wouldn't be here with us today.

I will receive more detail about his surgery plan tomorrow so keep an eye out!

Daylen in his hospital gown - getting ready to be whisked away for his procedure.
(Daylen was called a female twice today btw! not sure if it's the name or the hair???)

sleepy bear :) - after his heart cath

Monday, February 7, 2011

Heart Cath - The night before

It took me all weekend to try and come up with a GOOD plan on how to tackle the last few hrs leading up to arriving at the hospital for Daylen's heart cath. 

My plan is to keep him up til midnight, feed him, and let him sleep his lil heart out until it was time to leave the house. 

Daylen's usual schedule is to go to bed around 7pm...sleep for 5-6 hrs, wake for another feeding, sleep for 4 hours, eat again, and sleep for 2-3 hours. This puts him waking up everyday around 7-8 am. 

It's 9pm right now, and my plan is already failing. He fell asleep already and i can't keep him up...even if i have him sitting up on his butt - he still sleeps! I can only change his diaper with cold wipes so often b4 his lil bum gets raw!!!!

I guess I will just have to suck it up an deal with a screaming baby by myself in the morning :/ 

Sunday, February 6, 2011

Next Heart Cath

Daylen is scheduled for a heart cath on Feb 8th. I am beyond nervous, and hate the idea of going. Even though heart cath's give the cardiologists all the info they need about Daylen's heart, I wish he didn't have to go thru it. The risks associated with heart cath procedures are very low and rarely happen, but he's my precious baby and I hate him constantly being pricked and poked. We have to be there at 7am and I can't feed my little one after midnight. Are they kidding me???? I am going to go insane, especially because I have to do this alone. My fiance works til 6am so he will be meeting us up there afterwards.

The procedure should only take an hour or two, and he will be staying at St. Vincent over night for 24 hrs. I don't like that idea either. My baby is very demanding, and very particular about how he wants to be handled and he looooovvves watching tv! I wish I could stay there for the whole 24 hrs but I have class tuesday night at 6 pm. :(

Daylen's second surgery is coming up. After the doctors get the cardio pics they want, they will determine from that when his next surgery will be. My guess would be in April (making him 5 months old). Let's see if i'm correct!


Friday, February 4, 2011

National Wear Red Day!

Today is National Wear Red Day so we are doing just that! Although this day is mostly set up to support women and heart health, there are many many others battling with heart disease! Please wear red to show that you are aware of heart disease!

Awareness = Education....Educatin = Research....Research = Hope!!

Feb 4th - National Wear Red Day
Feb 7th thru 14th - CHD Awareness week
Feb 14th - CHD awareness day