I don't know how to deal! — The Bump
Special Needs

I don't know how to deal!

Let me preface this by saying that I can respect all of the situations we are all in, but I feel like there really is no other place to find support...

My son was born with EA/TEF with no other complications.  As if this wasn't hard enough to deal with, now we're dealing with lingering complications.  He has slight dilations in his kidneys, and he has high blood pressure of unknown etiology.  The urologist is confident that his kidney issues will resolve on their own.  And, since the blood pressure is a medical mystery, we have no timeline for its resolution.

Will the SH!T never end?  I just feel so sad for my boy!  My DH says not to worry that he's been through worse and all of this will pass.  But, you should see him, he's so amazingly beautiful I feel like his insides don't match his outsides.  And, I secretly feel guilty for "baking" him wrong.  I don't have anyone to talk to because I put up this front like it's all OK, but I'm not.  Maybe I should start being more honest with my DH.  I don't know - does it help to dwell? I can't figure out what it is that I'm feeling...

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Re: I don't know how to deal!

  • You came to the right place!  These ladies are amazing!

    My son was also born with EA/TEF along with imperforate anus (no anal opening), double drainage system on his right kidney and his left is half the size it should be and does 15% of the work, laryngeal cleft, 2 small openings in his heart (ASD & VSD), and only 2 fingers on his right hand and they are fused.  This all falls under VACTERL Association which I am sure the docs have talked to you about. 

    We rode the roller coaster in the NICU for nearly 6 months and it was so painful and ridiculously difficult at times that I never thought we would make it through.  The good news is Drake is going to be 3 in July and he is AMAZING!!  :)  He runs around the house like a normal 2 year old and throws temper tantrums and picks on us and his sister and we enjoy every minute!  Our family is stronger than we ever thought we could be and life is good.

    In short, I truly know how you feel.  I still wonder what went wrong during my "totally normal" pregnancy and I "know" that I am to blame somehow.  The truth of it is that none of that matters now and we have to enjoy life as much as possible.  I don't fault you for feeling the way you do but I wish I could help you get through it.  

    Please let me know if I can help in any way.  I am also in CA, by the way.  :) 

  • Hi there....pp wa right! You came to the right place!! I have twins, one was born with tef/ea type C. She has a whole host of other issues, heart defects, kidney defects, probable tethered spinal cord, trachea malasia,malrotation,bowel obstructions.....She Is only 16 months!!  She was just reallt sick with gastro and a UTI....Now I'm worried about the UTI because of her kidneys.....I just about lost It this time....I told my Mom that I can't deal with this anymore,I'm always worried and It really consumes me at times!! I was just telling my Mom that I feel bad for making her like this and I hope she doesn't hate me when she Is older!!! I'm so sorry, this was suposed to help you...I really want to let you know that you are not alone!!!!! You have every right to feel like tjis, and only time will make things better!! :)

    You can add me on facebook If you want, I have quite a few fellow TEF mommies from the USA and Canada on my friends list.

    Mandy Hill Bailey

    Take care sweetie

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  • You aren't dwelling, you're processing your situation and that takes months and years.  Everyday you see your LO and wish you could take it away.  That is completely normal.  You need to be upfront and honest with your DH and family.  You can't be your LO's everything, hold your family together and not take care of yourself. 

    DD was born 2 1/2 years ago with a skin condition that has slowly gotten easier to handle over time.  But sometimes I still live in her newborn days/months when things were so overwhelming I was ready to just jump in the car and drive away.  

    You aren't alone and if talking to your DH isn't enough then I would suggest counseling.  It's helped me a lot.

  • Hi,

    "Don't feel guilty, you couldn't have done anything to prevent this"  (sound familiar?)

    I've been  struggling as well. My son was born 3.5 weeks ago, and started having seizures...Turns out he had a stroke. Who knew that infants could even have strokes? (Not me, that's for sure). His prognosis is good, but we are terrified. I was so careful about EVERYTHING. And the odd thing is, when we were in the NICU, every mom that I met there was in the same boat as me...pregnancy was fine, no complications, then BAM! A baby with needs so extreme they had to be admitted to the NICU.

    I've found that talking it out has been helping me cope a little better. I plan to see a counsellor soon, though. These guilt feelings can't be healthy...and the crying...well let's just say my son has been introduced to showers early...poor kid.

    I hope that everything works out for you :)  

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