CyndRN's profile

CyndRN
	Age: 40 Country: US Province/region: Michigan City: Sterling heights Partner: Josh Children: Yes, 3 Pregnant: No Occupation: RN
	Online: 23 days ago. Last updated: 23 days ago. Member since: 1387 days
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Comments 26-50 to CyndRN
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triciah - Tuesday, 14 October
no they didn't tell us about the agenesis of the corpus collasom until after he was born and they haven't done any mri's at all. they did a ct scan while he was in there this last time and we had thought from what they had said that they had made a mistake about the agenesis, but that diagnosis was still on his discharge papers and i told my husband we'll have to ask about it when we go this wed to neurologist, but when we had to take him back this past weekend, and they did the ct scan they mentioned that everything has remained stable from when he was born still at 38mm vents and agenesis and i asked how much was missing partial or whole and they said i'd have to ask the neurologist, so we have to wait to find out more about that.ryan has been eating pretty good, but i am pumping and not getting much , but when i try to feed him my milk he's not really liking it, but we supplement with similac advanced with iron. so far he doesn't have any allergies that we know of.i we go for another u/s this wed too, good luck with your appt. and hopefully it will resolve and your little one won't have to have that surgery

tiffjoy - Monday, 13 October
I am an RN also and I remember from nursing school that if you have a premature baby their milestones would be the age of their due date. So in your little ones case he would be doing things that a 3wk old would be. Hope that helps!!

mariska - Monday, 13 October
Don't forget to take good care of yourself too. Could it mean things are correcting as he is acting normal? Hope you will get good news the 15th. - Mariska

triciah - Sunday, 12 October
ryan's home now and doing fine no signs of any infection

turtlemom - Friday, 10 October
We basically called the office of Dr. JoAnne Kurtzburg who is the only doctor doing the infusions for hydro that we are aware of. Her clinical director is June Allison (ph: 919.668.1125 - email: allis006@mc.duke.edu). We worked with June to get everything scheduled. Did you bank your little ones cord blood? They can get it transferred to Duke for the infusion. They prefer to do it within a month of birth, so you will want to contact them asap. Good luck! Let me know if you need help.

Lorien - Thursday, 9 October
You and your family will be in my prayers! Hang in there it sounds like from all the other posts this will be a great outcome. Keep us posted.

catbertie - Tuesday, 7 October
Keep us updated with the shunt and how everything goes.....we'll be thinking about you and praying too!

casey - Tuesday, 7 October
DO NOT WORRY ABOUT THE SHUNT SURGERY. My grandson has had 4 of them in such a short time and he's been doing so well. You'll be surprised at how soon he'll come home from the hospital.

Ali-s - Sunday, 5 October
Hi there
Just a wee message to say that I hope you and your little fella are doing OK?
You have been in my thoughts recently as I know you must be worried sick and it doesn't help that the doctors seem to be in no hurry with your appointments but I really hope and pray that all will turn out well and you can at last put the worry behind you and enjoy that wee fella of yours, he is a lovely wee thing.
Ally xxx

dsryan - Thursday, 2 October

how is your little one doing? i have briley's mri oct. 20, scary! she is doing very well though, hitting all her milestones perfectly, she is a little over 4m now. hope all is well with u.

Lorien - Tuesday, 30 September
Thank you for the info! I am always glad to here from moms who have some knowledge to what is going on. It is nice to hear what others know or what others have been told by their Dr.'s it is like being able to get multiple opinions without having to sit in the waiting room forever!

Lorien - Saturday, 27 September
Thank you for the info and sharing your profile. Your son is adorable. I hope you are able to get in earlier than Nov. That just seems insane! I have an ultrasound with a specialist on Wednesday. The first one that found the enlarged vents said everything else looked great and the test I had early on for down syndrome/trisomy 18 were normal so we are praying this is just something that is normal for her. I had an ultrasound at 13 weeks, 19 and 20 and none of those had enlarged vents so this was a new finding at an ultrasound they were just doing because I was measuring a little large. Turned out the baby is right on target for size they just happened to find the increase in vent size.

triciah - Thursday, 25 September
dr appt. this morning showed no progression, they are going to bring me in tues sept 30th to start getting my body prepared for the induction the next morning.alot scared and not having a good day,crying alot, husband mad at drs because he thinks they have more answers to this problem than what they are telling us, but i tell him they are not GOD and they can't predict the outcome until after he's born, but he won't listen to me and i'm just emotionally drained and a mess today, hoping for a better tomorrow, thanks for listening.triciah. wishing you the best at your next appt.

triciah - Thursday, 25 September
hi cyndrn, i just got back today from my ultrasound and the vents have increased from (they said 18 last time) but the sonographer today said the screen said last time was 19 and 20, and now 2 weeks later they are at 26 and 28, so i'm having a sad day, because they are saying its not a significant increase,but i feel it is a large increase over a 2 week period and i am a little upset today(hopefully this will pass in a day, like my first initial shock did). but hormones are causing uncontrollable tears today and that is upsetting me and not good... i don't want to stress the baby or my husband for that matter either. he was upset today, which i was doing ok until he wasn't, then it just flowed. i have one week until the induction next wed oct 1, but it could change depending on if my body has started to ripen or not yet, because i hadn't changed from 80% efaced over a 2 week period,last week. i have an appt. tomorrow morning for internal exam to see if i've progressed and if not they may change my induction. i'll update tomorrow, tired and drained right now. how are you doing? keep me posted, nov.6th is a long way away, is that his only next appt.?and what are his vents measuring at now that he has been born? did they or do they increase? is his head normal size to his body? i'm just curious as to what to expect. today they talked about shunting possibility after my little one is born. gotta go, triciah

mariska - Tuesday, 23 September
sorry to hear about that Josh may need to be shunted. But hopefully it will do him good and he will grow up to be a happy and healthy little boy. By the way saw the pictures of your other two boys, they are really grown up, what do they think of their little baby brother?
Benjamin had an U/S 12 hours after he was born. After screening all the brain images and various measurements of the pressure in his vents, they said "it is all good and no follow up needed as something that has not been wrong can't go wrong". Weird...of course I am very happy, but also very insecure. His head is slightly bigger than the rest of his body. I am going to the hospital for his hormones on 2 October, so I will ask them to recheck it, to reconfirm it really is ok! Keep you posted. - Mariska

mariska - Monday, 22 September
Hi there, how are you and the little one doing now? Just out of curiousity and info as well, Benjamin's head circ was 38.2cm when he was 4 weeks old, I cannot find any earlier measurements. His head is just above the average growth curve and the rest of his body is spot on average. How does Joshua sit in the curves. Although they told us everything is good and no follow up is needed, I still wonder what is considered good....Benjamin sleeps and eats great and he is growing really fast, so he head does as well. Sorry to bother you with this, but as Joshua's 3rd ventricle was also visible I just wonder why your treatment is completely different than ours. Anyways hope you are doing really well and you are enjoying Joshua despite the difficult start. Thanks, Mariska