Update from need to vent post

AlwaysSunny925

So we got a call from Aiden's doctor and it turns out that his bleed did progress to a grade 4.  We had a great visit this morning and we got the call about an hour after we left the hospital.  He also has an infection and has been put on antibiotics, but the doctor said it isn't really a cause for concern and they will do another culture tomorrow to see if the antibiotics are working.  

At this point our biggest concern is that both boys have grade 4 brain bleeds.  I am not sure what to think at this point and I'm hoping for some success stories if anyone has any.  I am prepared for developmental delays and even CP, as long as the boys come home with us.  What I am not prepared for, and even scared to say out loud, is if they do not make it out of NICU.  I know I have to be positive, but sometimes it's really hard.

On the bright side, both boys are being given my breast milk, and daddy got to change his first poopy diaper today.  

Thank you ladies for all your support.  It really helps to get this stuff out.

kck329

I don't have any experience with this but I wanted to say I'm thinking about you and your boys! The NICU is such a scary place, focus on the things you can celebrate like poopy diapers (really-that's awesome!) but know its ok to be scared too.

::hugs::

adrielegorburu

My girl had bilateral grade II bleeds so I dont really have any experience that relates to yours.  All I can say is I've heard sucessful stories of grade 4 bleeds on this board and from other NICU grads who were in while we were there.  There may be obstacles from the bleeds but your boys will have the two of you to help them through it.  You guys are in my T&P.  Celebrate the BM and the poopy diapers! those are two great things!

Medtwin

just remain positive..as much as you can..  my daughter is 65days old; 36w4days.. and she has a grade 4 & grade 2.. the 2 has resolved itself..the 4 hasnt changed (not gotten worse..so we say TYG (thank you god).. and hope for the best.) dont read alot on the internet.. or read the good stories.. our docs say that she may have something mild in future..but no one can really tell you.. once you're babies are big enough, they'll start with OT & PT in nicu.. Grace is getting OT 3-4x's a week to help with range of motion & her pelvic area & legs..  I was just having this conversation with Grace's OT person.. & even she said..long term NO ONE can tell you what will happen..it really is a day to day process..

GL!! Enjoy your babies!!

 

bhilyer

I'm so glad you had a great visit this morning.  It's so tough having a LO in the NICU.  Your boys have already proven how strong they are.

I  have no experience with brain bleeds, but hopefully Lemen will reply.  If not, click on her update post below and read about her son, Andrew.  He had a bleed and is doing quite well.

 

PS - I'm the crazy that sent you a FB message right after your boys were born [:)} 

OscarQ

My son didn't have a bleed but the other 26 week male in the NICU at the same time as Kevin had a grade 4 - and loads of respiratory issues.  He was in the NICU until about a month after his due date but he's home now. So hold onto that tiny glimmer of hope, faith, whatever keeps you going.

That they are receiving food at all is a huge milestone.  Celebrate it!

AlwaysSunny925

bhilyer:

PS - I'm the crazy that sent you a FB message right after your boys were born [:)} 

I must have missed it...I just checked and don't see anything.  Was it a PM?

AlwaysSunny925

bhilyer:

PS - I'm the crazy that sent you a FB message right after your boys were born [:)} 

I must have missed it...I just checked and don't see anything.  Was it a PM?

bhilyer

jnatkaniec:

bhilyer:

PS - I'm the crazy that sent you a FB message right after your boys were born [:)} 

I must have missed it...I just checked and don't see anything.  Was it a PM?

It was.  I'll send it to you again {:)] 

Mrs. Alice

I didn't read your other post until now.  I am so sorry you are having a rough time.  The NICU sucks.  The uncertainty, lack of control, and having to trust others with the lives of your children is the hardest thing ever.  Sending thoughts and prayers your way.  Feel free to vent any time!

irishdo

Hi.  I am sorry you are going through all this.  My twins were born at 24.6 weeks.  We found out about our sons Grade IV bleed one week after he was born (first HUS was nml) and 3 days after our daughter passed away.  I think it was the worst day of my life.  It was so bad that we at one point were trying to decide whether or not to move him into compassionate care only. 

HIs bleed was his major issue.  He did have laser surgery for ROP as well.  He came home after 111 days in the NICU, 5 days after his due date without any medications or oxygen. 

Today, Finn is almost 15 months old/11 adjusted.  He has a mild left hemiplegic CP (bleed was on the right).  He gets OT/PT/speech each 1x a week via early intervention.  He is delayed on milestones but pretty close to his adjusted age.  He is pulling up on everything, army crawling super fast, and close to a four point crawl.  All he wants to do is stand and walk holding our hands.  HE babbles up a storm and loves to imitate. His favorite thing in the whole world is his big brother, who is also the best therapy ever. 

 I know when we found out about the bleed I looked for as many positive stories as I could find.  They are out there.  Good Luck!

SushiNoMore

I don't have anything to say about the brain bleeds, but know that you and your family are in my thoughts.  I'll be keeping my fingers crossed for all of you.

JakesBride07

First off, lots and lots of hugs.

My DD (26 weeker) had a grade 3 & grade 4 bleed (one on each side) she spent 153 days in the NICU and is home now. She is behind her twin brother development wise, (he had a grade 2 bleed on the right side), but not by far.

They told us that they have no clue what the long term effects will be as well. But I think overall she is doing very well.

I worked for a neruologist a few years back and ran into them at a function when the twins were still in the NICU and we talked about the brain bleeds, and while they told me that yes they are serious and need to be monitored, one thing to keep in mind is how complex the brain is and that especially in preemies, they pathways haven't been completed yet, so the brain will grow and develop around these bleeds and that it will then "compensate" for those areas. Could there still be delays, etc, sure but I found that hearing that helped a lot.

AlwaysSunny925

JakesBride07:

I worked for a neruologist a few years back and ran into them at a function when the twins were still in the NICU and we talked about the brain bleeds, and while they told me that yes they are serious and need to be monitored, one thing to keep in mind is how complex the brain is and that especially in preemies, they pathways haven't been completed yet, so the brain will grow and develop around these bleeds and that it will then "compensate" for those areas. Could there still be delays, etc, sure but I found that hearing that helped a lot.

Thank you for this.  These are the kinds of things I want to hear and I've been staying away from the internet because I don't want to come across something I don't want to hear.