Day 264
This peanut is 12lbs 8oz and 22.25 inches.
I know that because we had 2 appointments today that lasted an awful long time.
Cliff notes? There is some stuff to watch for but they are very unlikely to develop into anything.
Detailed notes?
Heart
They did an echo on her heart and she has slight narrowing of her mitral valve. It hasn't gotten worse in the last 2 months and if it were going to be a problem, it would've gotten worse, likely. It's at 5mm. She also has a small obstruction in her left ventricle. It's also very small and unlikely to get bigger. Neither of those issues are causing pressure problems so they aren't anything to be concerned with. We will follow up in 2 months or if she starts to breathe heavily or sweat while eating, then I call him and he sees her right away. Fixes could include putting balloons in or surgery.
Brain
For her brain, we saw the same guy from Children's that we saw when she was in the hospital for her heart surgery. It's a long story but basically, we were told last July while I got an MRI that she might have this thing called ventriculomegaly. She didn't have it. Then when she was born we were told she had a grade 2 brain bleed. Turns out, she didn't have that. So what? So we had follow ups to keep an eye on it. She had an MRI two days before her surgery in March and were told all of this. She had a few ultrasounds done after including one from May 16. UMass did a piss poor job of relaying the information to Izzie's pediatrician and so she freaked out, I freaked out and we sent the info and images to Children's which led to the consult today. He opened with, "So you happen to be here on my stroke & brain disease clinic day because that is when we could fit you in so quickly but she does not belong here. She's one of the healthiest kids here". He said that nothing has changed since March. Her ventricles are slightly enlarged but kids with DS tend to have that - it's part of what makes them have delays. I asked, "if it's so common, why does no one else in the DS community know about it or talk about it?". I am in several groups on facebook and have asked about this and NO ONE has heard of it. And basically, he said that most people don't get the level of prenatal screenings we did. Almost no one gets MRIs prenatally. You only get brain scans if you are born premature (and she was 5 days). And also, 67% of people abort once they know their kid has DS in the USA. So it's 33% of people who know in advance (and MANY don't know until birth). Only 1 in 800 are born with it so it's a small chunk of people who get this done. He said she has no evidence of brain disease or stroke or anything that is wrong. She has a little white matter loss that fluid filled in but is unlikely to cause anything. He says he suspects this will never turn into anything however he wants to keep an eye on her just in case so we will have an ultrasound at Children's (we're done with UMass for brain stuff) around her 1st birthday. And then we will go from here.
When we were in the NICU with Jack, the alarms on the monitors for his heart and oxygen would go off ALL the time and most of the time, it was fault sensors. And the nurses would tell us, "before you freak out - look at him. If the alarms are going off and he's sleeping and not blue or looks like he's in distress, he's fine. Look at the child." And so we got used to looking at him first when the alarms went off instead of the nurses. And 95% of the time, nothing was wrong. The doctor for her brain said essentially the same thing. They did a bunch of tests on her with lights and objects and interacting with her to make sure one side wasn't "weaker" than the other and that she was progressing well as a kid with DS. She's happy and loves people and is rolling over and eating food and grabbing for things and puts everything in her mouth. They asked a ton of questions. After he said, "look at her. She's great. Whenever you're worried, just look at her. If she's doing well and is growing and there are no issues, you shouldn't worry about this." Easier said than done. It's hard not to worry but I get it. He has a point.
I know that because we had 2 appointments today that lasted an awful long time.
Cliff notes? There is some stuff to watch for but they are very unlikely to develop into anything.
Detailed notes?
Heart
They did an echo on her heart and she has slight narrowing of her mitral valve. It hasn't gotten worse in the last 2 months and if it were going to be a problem, it would've gotten worse, likely. It's at 5mm. She also has a small obstruction in her left ventricle. It's also very small and unlikely to get bigger. Neither of those issues are causing pressure problems so they aren't anything to be concerned with. We will follow up in 2 months or if she starts to breathe heavily or sweat while eating, then I call him and he sees her right away. Fixes could include putting balloons in or surgery.
For her brain, we saw the same guy from Children's that we saw when she was in the hospital for her heart surgery. It's a long story but basically, we were told last July while I got an MRI that she might have this thing called ventriculomegaly. She didn't have it. Then when she was born we were told she had a grade 2 brain bleed. Turns out, she didn't have that. So what? So we had follow ups to keep an eye on it. She had an MRI two days before her surgery in March and were told all of this. She had a few ultrasounds done after including one from May 16. UMass did a piss poor job of relaying the information to Izzie's pediatrician and so she freaked out, I freaked out and we sent the info and images to Children's which led to the consult today. He opened with, "So you happen to be here on my stroke & brain disease clinic day because that is when we could fit you in so quickly but she does not belong here. She's one of the healthiest kids here". He said that nothing has changed since March. Her ventricles are slightly enlarged but kids with DS tend to have that - it's part of what makes them have delays. I asked, "if it's so common, why does no one else in the DS community know about it or talk about it?". I am in several groups on facebook and have asked about this and NO ONE has heard of it. And basically, he said that most people don't get the level of prenatal screenings we did. Almost no one gets MRIs prenatally. You only get brain scans if you are born premature (and she was 5 days). And also, 67% of people abort once they know their kid has DS in the USA. So it's 33% of people who know in advance (and MANY don't know until birth). Only 1 in 800 are born with it so it's a small chunk of people who get this done. He said she has no evidence of brain disease or stroke or anything that is wrong. She has a little white matter loss that fluid filled in but is unlikely to cause anything. He says he suspects this will never turn into anything however he wants to keep an eye on her just in case so we will have an ultrasound at Children's (we're done with UMass for brain stuff) around her 1st birthday. And then we will go from here.
When we were in the NICU with Jack, the alarms on the monitors for his heart and oxygen would go off ALL the time and most of the time, it was fault sensors. And the nurses would tell us, "before you freak out - look at him. If the alarms are going off and he's sleeping and not blue or looks like he's in distress, he's fine. Look at the child." And so we got used to looking at him first when the alarms went off instead of the nurses. And 95% of the time, nothing was wrong. The doctor for her brain said essentially the same thing. They did a bunch of tests on her with lights and objects and interacting with her to make sure one side wasn't "weaker" than the other and that she was progressing well as a kid with DS. She's happy and loves people and is rolling over and eating food and grabbing for things and puts everything in her mouth. They asked a ton of questions. After he said, "look at her. She's great. Whenever you're worried, just look at her. If she's doing well and is growing and there are no issues, you shouldn't worry about this." Easier said than done. It's hard not to worry but I get it. He has a point.
she is an angel, sent to us and boy what a love! She is more than fine and more than wonderful. I think as she grows, she will be more "normal" than most people!!! love her dearly!!!
ReplyDeleteShe is perfect. Look at that belly
ReplyDelete