Isabelle Bentley

Izzie was supposed to have an eye appointment but it ended up being canceled due to her having surgery within a month. They'll see her in like 3 months.

Lots of giggles.

Izzie and I cuddle on the bed at night for a little bit. Sometimes there's no room for Scott. :(

Izzie saw her cardiologist to check on her infection - it's doing great.

Izzie's first easter! It was a hectic, long day filled with 5 stops but it was nice. First we visiting his dad. Then we went to do an easter egg hunt at his grandparents. Then we went out to eat with his mom and grandparents. Then we went to the Wolny's as we do for every holiday. And lastly it was off to my brother's to have dinner with his girlfriend and her mom. Her mom made Izzie a gorgeous sweater.

Her infection is much better. 

This peanut had 4 appointments today. Her cardiologist saw her first and put her on antibiotics for the infection. Her orthopedist looked at her right foot to triple confirm it's not clubbed foot - it's not. And he took xrays of her hips because kids with DS can have issues there. They looked great. She met with a geneticist (expert on trisomy 21) who answered some questions I had. And got her blood drawn for her thyroid. We were told they might reduce her medication because last time she had it measured, it was 1.11 (needs to be below 6.5). Well... it came back at 7.32. WTF? So her meds are being increased. That sucks. 

The visiting nurse said the infection looks "angry" and should be seen by the cardiologist so he's fitting us in tomorrow. We've been in touch every day with pics.  EIT gave us new ways to help "tighten" her tone.

So... this happened Monday and we've been monitoring it. It's not getting worse but it's not getting better. No fever, eating fine. It's the bottom stitch that popped open and is slightly infected.

Chilling after doing some pt. 

Today is World Down Syndrome Awareness Day. You are supposed to wear funky socks and/or yellow & blue.  Northbridge High School did it. They were on the news and in the newspaper . 

We hung out with friends Kim, Jeff & Jaxson. And met the Easter bunny. Jack is an expert at egg hunts.

The annual Massachusetts Down Syndrome Congress Conference was today.  Scott & I attended sessions on being a new parents of a child with DS, floor time activities and occupational therapy (ways to help her with things like brushing her teeth, getting dressed etc...). We met the keynote speaker - Tim Harris - who is the only person with down syndrome to own a restaurant in the country. He also was our friend, Kim's, homecoming king (she was queen).  So I chatted with him about her. Her onesie says "my extra chromosome makes me sparkle".

Relaxing. Starting to eat more.

Happy Saint Patrick's Day! Her EIT appointment went really well. She gave me lots of tips and tricks to help her start getting less low toned. She'll always have low tone - it's something you're born with but you can work on it. Like I've said before, it's not a bad thing. Gymnasts are low tone, marathon runners are high tone. Same shirt. Her visiting nurse also came and checked her out. She's doing awesome.

:)

Up to 21 inches and 8lbs 15oz. She had a pediatrician appointment. She's doing great.

Isabelle has an ekg and echo today and they determined there are a few things we need to keep an eye on. UGH. Here is the summary from the docto r: S he has a couple of small “patch margin” VSDs and one very small patch margin ASD.  There is very mild left ventricular outflow tract (LVOT) obstruction, likely the result of the mitral valve repair (we see this with some regularity and when mild it is no cause for concern).  There was mild mitral regurgitation (often seen after this type of repair).  The left ventricular function looked normal.  I just looked over the pre-discharge echo report (thanks for giving me access!  Dr. Breitbart’s office hasn’t faxed over a copy yet) and everything that I mention above was noted on the pre-discharge echo with the exception of the patch margin ASD (the VSD was noted but not the ASD), and the LVOT obstruction.  We were likely able to see these today and not in the pre-discharge study perhaps because she was so angry...

We (Scott) spent a lot of the day outside doing work. Jack pretended to help. Iz & I watched. 

Poor Isabelle. She was having a really rough day. I think she was in pain which is weird because she really hasn't been - not even in the hospital :( I've been checking her temp and it's fine but I've also been giving her tylenol (and checking the temp like 5 hours later so it's not affecting the temp). She's been eating less and crying more and just seems uncomfortable. Today she had visits from Grandpa Fuchs, Grandma & Grandpa Bentley, Aunt Amanda and Mackenzie (what a lucky kid!). I just wish she had been feeling better. Poor thing. :( I gotta keep reminding myself that not every day is going to be amazing. She just had major open heart surgery and if I had that surgery, I would be in rehab and on some major narcotics. She's still in pain and only on tylenol. Babies recover fast but she's not healed. It's 7:47p as a I write this and I also need to keep in mind that she sleeps best in her bassinet, in our room, with the lights out and...

Grandpa Fuchs came to visit.

First day home was a success. Lots of smiles and giggles.

Last day in the hospital. Her EKG came back perfect. Busting out of here! Home at least and on a gorgeous 70 degree day. What day wouldn't be complete without Jackson sticking stickers all over her??

Today, Izzie got a chest xray which came back with nothing on it. She also had another sedated echo which came back, in the doctor's words, "perfect".  Her potassium level is a little high but they will recheck it before she goes home tomorrow.  From day 1 to day 5. Can you believe this angel had open heart surgery just 5 days ago!?!?! She was very smiley today and she's gained weight since being int he hospital. CJ & Andie came and visited. 

Happy 4 months, peanut! It's reallllllly flown by.  The blanket on her below is a prayer shawl (that looks like a watermelon) made by someone from St. Patrick's Roman Catholic Parish and even though I'm not Catholic (although I do believe in prayer) I think it's a really cool thing that someone made. They made one for each of us which is awesome and very thoughtful.  Wire free since this am. The pacing wires that were in her body (wrists, I think) that gave instantaneous and continuous blood pressure were taken out today as was the nose cannula. The only thing left is the IV for when they need to give her meds (antibiotics and Tylenol at this point... plus she may be on some lasiks still) or take blood for labs.  Jack came to visit today too! She's slated to come home on Wednesday after having labs taken, a chest x-ray and another sedated MRI tomorrow. As long as they go well, she will be coming home Wednesday.