Intro.....

MereMM7

   Hello, I guess it is about time I introduce myself.  I have been following this board since the end of March, when I unexpectedly delivered our baby girl at 30 wks and 2 days. 

    A little background, we have a 2 year old son, induced at 38 weeks due to IUGR and a now almost 4 month old daughter ( 7 weeks adjusted).  Our daughter was born March 28th via emergency C-section for placental abruption.  I was being watched closely due to big brothers IUGR and an "ecogenic bowel" seen at my anatomy scan, and oddly enough had an ultrasound the day before at the high risk center for growth and all was well.  I was shopping at the mall when I felt a gush of fluid and looked down and there was blood everywhere.  Our daughter, Evelyn was born less than 2 hours later, weighing 2 lb 12 oz.  She took a breath, cried, and then took a turn for the worst, they ended up having to resuscitate her and intubate her (which they also gave her the surfactant after intubation)

   I first saw Evelyn about 3 -4 hours after birth (general anesthesia), and she was still intubated and critical, but "stable", if you can be stable and critical at the same time, lol.  Long story short.....we spent 52 days in the NICU, she did wonderful with the exception that it was found she had a very mild Grade I IVH, and the most devastating news was that at some time in my pregnancy Evelyn was exposed to Cytomegalovirus (CMV).  They found this during the routine brain US.  Evelyn's brain had caclifications and enlarged ventricles (from the CMV), she was started on an antiviral treatment for 6 weeks via PICC line.  The medicine called gancyclovir caused neutropenia and Evelyn was on and off of reverse isolation. She also had an MRI the week of discharge which showed "polymicrogyria" - a malformation of the brain associated with CMV (prognosis varies........no one can tell us what to expect at this point, just you will know when you know) 

 

   Fast forward to today, Evelyn has been home since May 18, one day before her brothers second birthday.  We are exclusively breastfeeding, and she is doing well.  Gaining weight slowly, about 4-5 oz a week, but gaining!  We started with early intervention this month and I was excited that she has started smiling in the past three weeks and cooing!!! Great news for us as CMV is associated with a slew of delays, MR, CP, etc, etc. 

    If anyone is still with me, I thank you!  For some reason today I feel the need to talk about Evelyn, and sometimes family and friends are overwhelming b/c they ask questions that I wish I had the answers to.  Today we saw Evelyns Neurologist for the first time, a Pediatric Neurologist at Johns Hopkins.  She reviewed E's NICU chart and MRI report and answered my questions, but of course no concrete answers.  She was vague about her exam, said she looks good, but they don't expect much from 6 week olds in development.  She did mention that her tone was a little on the low side, even for a preemie.

  I think this is the most frustrating part for me, I feel like I just need to know.......what does the future hold.  I don't want to limit my daughter, or put my expectations of her "in a box", I just think it would be easier to be prepared.  Everything online I read is so varied, from "Normal" (I use that term loosely), to mild delays to severe MR and irretractable Seizure disorders. 

     Is it so bad of me to just want to know, want  to know what to expect from my daughter, will she ever walk, talk, go to school, etc.  It's not that I would ever love her any less, I just want to know, to prepare.  It's so hard to look at my beautiful daughter and look into her eyes and know that somehow my body failed her, I couldn't protect her from this awful virus. 

So sorry for the vent, I just read the post below about the preemie mom oath and it broke me down.  I try to be so strong sometimes and I love my daughter so much, but It is really hard sometimes too.  I know many of you have been through similar things and I look to all your posts for your strength and knowledge, and if anyone has any experience with CMV I am always looking for more info.  Thanks for reading, am looking forward to posting regularly on here.

jbranden12

Welcome, and ((HUGS)). We can never walk in each other's shoes, but I can definitely relate to many of your feelings. My Anna suffered grade IV/II IVH which caused PVL, a porencephalic cyst, and hydrocephalus and she now has a VP shunt to drain the CSF from her ventricles. Our neuro told us early on that she could be the clumsiest kid on the soccer team or she may never walk, talk, or interact with us in a meaningful way. Though we were presented with the option of removing support when she was on the ventilator, we could not take this step with such uncertainty about her future.

It is very hard to be thankful for my daughter yet so angry about the journey we are now. Right now, she is beautiful and doing pretty well. She does not require oxygen and is also EBF. She smiles, coos, and does many things a 3 month old should. We also work with EI. The hard thing is that the older she gets, the more damage we will see and I hate that. I am at a point now where I try not to think about the future at all. I don't imagine her as a toddler, preschooler, or beyond. I can't do it without immense pain following because I don't know if it will ever happen. This is hard because I think humans are hard-wired to look towards the future, but I just can't right now. 

Anyway, I am glad Evelyn is doing well and look forward to getting to know you!

flerlgirl

Welcome! I'm glad Evelyn is home! I totally understand what you're saying - every time Josh does or doesn't do something I wonder if he's on track, if he'll need extra help, if he'll ever catch up. I wish I had a crystal ball to see the future! But no matter what happens everything will be all right Hang in there!

DrRx

Welcome to the board! I'm so sorry that you are having to deal with CMV and all the unknowns that go with it.  My daughter was 26w2d when she was born via c-section due to me pPROMing around 21-22 weeks with a tear/slow leak.  The unknowns are definitely difficult, and it was hard for me to just take things one day at a time.   

EI is a great resource and we've been doing it ever since she came home from the NICU.  We only did it once a month until she was about 5 or 6 months actual, where we changed it to every week.  It has definitely helped with her development and reach milestones.  I stopped reading what all the milestone books say that she should be doing, and instead just focused on whatever the next step was. 

Please feel free to vent away.  The ladies on this board are super helpful.  They have helped me a bunch, and were one of the reasons why I was able to remain relatively sane while Adalyn was in the NICU.  (((hugs)))

jcsntms06

Welcome M! I'm glad you have found your way over to the preemie board. The ladies here are a great bunch. I'm so glad that Evelyn is home and doing well. Definitely let me know if you need anything or just want get together for a chat.

direy25

Welcome to the board and congrats on the birth of your daughter. I'm sorry that you're dealing with all of this but happy she's home with you and doing well!