3.5 Kilos and a possible Surgery Date??

So the good thing about having many different doctors, cardiologists, neonatologists,  and nurses looking over Dylan is that you get many different opinions and thoughts....... The bad thing is..... you get many different opinions and thoughts!!  Last week I posted that we had talked to one of his cardiologists and she had told us that they were not waiting for Dylan to get to 3.5 Kilos as he had been previously told..... Well ........ apparently we're back to we ARE waiting until he's 3.5 kilos.  When I was at the NICU visiting with Dylan on Friday, I saw Dr. El Said roaming around, she is the Cardiologist who suggested the Hybrid Norwood for Dylan, so I thought I would have one of the nurses page her for me so that I could ask her some questions and kinda get a feel for what they are thinking and how Dylan is doing..... While I was waiting for her to be paged, I saw Erin, who is a part of Dylan's Surgical Team, go into the room next to me......... so I thought  " Oh there's Erin... even better!"  So once she came out of the room I grabbed her and pinned her down for answers ( Not literally grabbed and pinned down ;-)  ........... and this is the gist of what she told me ....... we ARE waiting for Dylan to get to 3.5 kilos ....  She said that with the way that Dylan has been gaining weight, if he continues to gain he will be able to be at 3.5 in 21 days.... so they are gonna give him about 3 more weeks...... if he stops gaining weight, they will re-evaluate and probably add more calories into his feedings since he is only at 20 calories right now. I am not sure why the cardiologist we talked to last week told us that we are not waiting until he's 3.5 .........  I think it was because she probably did not know Dylan's specific case and was just speaking in general ......... Generally..... they don't wait until a baby is 3.5 kilos to do the norwood... generally a baby has their norwood in the first 5-7 days of life..... But in Dylan's case..... with Dylan's specific anatomy... it's BEST to wait until he's at least 3.5 kilos to give him a better chance at survival because he is considered even more higher risk than the general because of his "unfavorable anatomy".
  He will be getting weekly Chest X-Rays and blood work every Monday, and a Heart Echo every Wednesday, and Erin and Dr. El Said will meet every week to discuss how he's doing and how everything looks.   So as of right now, I guess it looks like he could possibly be having his Norwood in about 3-4 weeks time.  I of course have mixed emotions about it.  I WANT him to have it because I know that he needs it and that it's the only way that we're gonna be able to take him home..... but I DON'T want him to have it because I know that there is a high risk of us losing him.  I'm trying so hard to not think that way.... to just trust in how strong he's been so far, and to just think about how great it's going to be once we're past the Norwood and we're bringing him home, I'm trying so hard.  I can't even begin to explain the range of emotions I go through on a daily basis...... on a minute to minute basis...... I honestly don't know how I've made it this far .... but I guess if Dylan's still fighting......... so can I. :-)

If we look at the BIG picture ( which is what I'm trying to focus on )  Dylan is doing really good, and making really good progress. He is able to breathe on this own and doesn't have to intubated.  He's not on Nitrogen or Oxygen anymore.  He's on a relatively low dose of the PGE.  He's not suffering from Apnea anymore, He's gaining weight pretty quickly, and there hasn't been any major complications.  He's fighting... and he's showing us how strong he is.  I just have to have faith in him........ that he'll be able to make it through his next operation and to come home where he belongs.  He's mommy's little hero, and he's teaching me what it really means to be strong and to be a fighter. <3

To my precious little boy .....

* You LOVE to be held
* You LOVE your Wubbanub that your cousin Mandy got you
* You LOVE the music player that your Grammy got for your crib ... especially the Twinkle Twinkle Little Star song <3
* You LOVE to be swaddled ... and you love to show us how strong your lungs are when you are not.
* You like to have your head and your temples rubbed when you're trying to fall asleep.
* Some of your nurses even call you peanut, and a few of them are disappointed if they don't get assigned to you during the day.... they still come and check on you.
* Your toes are very ticklish ..... just like your daddy's <3
* You have your daddy's ears.... the same exact ears...just a smaller version of course....  it's cute :-)
* Your mommy and daddy love you SOOOO much, and we will ALWAYS be here for you!

Your Music Player your Grammy bought for you

You and your Wubbanub that you love so much! <3