Saturday, August 29, 2009

Our princess is PINK!

When we were pregnant for Ellie I remember them preparing us for how "blue" our baby would be. Honestly, when she was born she was rosy pink and didn't look like she had a thing wrong with her. That quickly came to an end and I can't remember a time when Ellie did not have purple lips, finger tips, and toes... wellllllll NOT anymore!! Our girl is PINK, bright beautiful PINK, head to toe!! It's amazing really. I'll post a picture I took of them today when we get back to Jersey.

We went in Thursday for our pre-cath tests. She did great and only freaked out about the blood draw, which Chris bravely handled while I sat in the waiting room with Charlie. Friday we were first case for the cath. They had trouble gaining access through her right femoral artery (I think that's what it's called, but I know the abbreviation is RFA, LOL). They entered through her left and had success. Her Fontan pressures remained low with a balloon sealing up her fenestration so they went ahead and put "the device" (which is how they all refer to it) in the stent and closed up the fenestration. They also ballooned her left pulmonary artery, which has a stent in it from a previous cath because of narrowing. She required no coiling of collaterals and the doctors were happy there was no leakage or regurgitation in any of her valves... which is pretty significant. Most HLHS kids of a little of both I guess?

It took a little while for them to get her on the vent and then gain access through her groin, but once they did it only took an hour and a half. I think in total we were away from her for less than four hours. When we got the call to go back she was just waking up and very agitated. The next hour and a half were the hardest because she was still pretty doped up and hard to reason with. She wasn't easy to calm and was completely freaked out by having IV's in both of her hands. She just kept waving them in front of her face and screaming. On top of that we had a know-it-all nurse that came in and told me basically that I was over stimulating my child. I know she was just trying to help, but her tone of voice really pissed me off! We know Ellie. TV calms her... and guess what? We were right! All it took was some Dora The Explorer and she was quiet and calm. LOL At this point her oxygen saturation was 100%, which is quite insane and still hard to believe. She never dips below 95!! Before the fenestration closing she was 73-78. Of course the day we went in for testing she was 85... but that is SO not the norm for her!

We were discharged this morning a little after 8 a.m. She has been doing so well. She already seems to have more energy and breath. It's truly amazing. We have to keep telling her to lie down and relax a bit so she doesn't make the incision site bleed. I think the only challenge we have left is changing the band-aids. Ellie doesn't have many fears considering how much she has been to the doctors and in and out of hospitals, but tape and band-aids are always an issue. She still has her lead stickers on! We told her she could take them off when she's ready. The groin band-aids need to be changed every morning for the next three days though so those she really doesn't have a choice about.

We have had a minor set back in the potty area because she doesn't want anyone to touch her. She thinks everyone is going after her band-aids. When she first got out they had clear medical tape over gauze covering the two incision sites. She threw up after having a pop and a half. When she threw up she caused a rebleed so they immediately had to call in help and put a lot of pressure on it after ripping off the tape. She hated that and the new covering was pulling at her skin and she couldn't even walk. That has caused some major emotional trauma. I'm hoping in a couple of days it will just be a distant memory.

I am thinking of just putting her in a pull up the first few days of preschool and hoping the teachers don't notice. I just don't want to push her. She really just needs to trust that nobody is going to hurt her when she takes off her shorts. Poor kid.

Other than the band-aid issue though, she really is doing so well. We are considering heading back home to New Jersey tomorrow depending on how Ellie is feeling. We were nervous she wouldn't be able to handle the car ride, but now we think she might be able to. We'll see tomorrow I guess!


  1. Oh I'm so happy for you guys! Thank you for posting this for us!!

  2. That is so good to hear!!! A pink baby girl!!
    Good luck with the bandaid issues we have then here as well!! Once one goes one it muset never be removed, and bathing is totally out of the question!!! and he is 5!!! I have even tried paying him!!! Thank you for keeping us up to date!!

  3. This is such exciting news all around.

    My next door neighbors sent their daughter to Tatem in pull-ups for months! No worries.