update on Blake..and need to vent

[maddysmommy]

Blakes still not progressing...he has pierre robin(soft cleft palate, small jaw, blocked airway)...i sit in that nicu all day everyday...i feel so useless i cant comfort him..i dont know what to do..he's so upset and restless..he struggles soo hard to breathe...he now has such a horrible diaper rash..that he's butt is actually bleeding..so that makes him even more restless...i cant stop crying...i  know i should still be happy..he's healthy..but i think about the long road he has ahead of him with surgeries and it brings tears to my eyes..one week old and they are already talking about three different surgeries...how do all of you mom's do it...i have read other posts from you guys about your babies...just how do you get thru each day...believe me i try like hell to hold it together..and i do well..but as soon as i hit the car come 10pm to come home forget it im a wreck...i feel like i have no one to talk to...yeah i have family..but they dont understand...they just keep saying it could be worse...well to me this is the worse thing ever...and besides the baby..im not healing..im still gushing blood and passing huge clots..my feet are still very swollen..but how can i rest at home knowing my baby's there crying...im on this horrible emotional roller coaster and need to be ok for my baby...sorry to vent..i just hope someone out there has some advice on how in the world to get thru this...

[Nicole624]

dont be sorry for venting thats what we are here for. I do not know what you are going through and I dont know how you do it. I am so sorry you are going through all this and I offer you my prayers and thoughts. If ou need someone to talk to, Im here to listen. j m a l k o 8 5 4 3 @ a o l . c o m

Nicole

[WeMissYouDalin]

Im so sorry to hear that, just keep thinking that you are very lucky to have him... and I would definatly be thinking it is the worst thing too.  Does he have help breathing or is he doing it on his own?  What are these surgeries, how soon are they done, and will it help?

[Me2mommy2b]

aww, honey, I definitely know what you're talking about. It is perfectly all right to cry when you feel upset.  It will help you feel better.  And it's perfectly all right to come on here and talk to us.  That's why we're here.  I am so very sorry you're going through this and I know how difficult it is.  I know how it feels to feel helpless.  When DD was in enormous amount of pain from reflux, drs kept telling me "let it pass, it's colic, all children go through it".  I would come home and cry b/c they weren't there during the day and didn't see what hell we were going through and she was going through as a newborn.  I educated myself about reflux, I read and read and went to different drs to get different opinions until I found the dr I was happy with.  You'll still be bleeding (that's normal at 1 week post partum) and your stress level is not really helping the healing process but you will get through this.  Women are strong...stronger than we think.  Do not hold it all in, talk to DH, whoever you can talk to.  Try to get info on Pierre Robin so you can make decisions.  Surgeries will help him function.  Prayers and hugs your way.  I'll be thinking of you and your little boy.  Come back and talk to us as much as you'd like.

[Renogirl]

Sending hugs your way.  Don't you dare apologize for venting or for feeling sad.  I think that's all part of the grieving process.  Even though I know you are very thankful for the miracle that is Blake - you are mourning the loss of that dream of a "perfect" baby, whatever that is, and you are hurting because you know this precious little boy is hurting and it isn't like this is an earache that he'll get over quickly - you are looking at future surgeries.  Sounds like you are dealing with things in a very healthy way - your grief isn't stopping you from being with Blake and doing everything you can for him - you just have moments where you are sad plus you are physically still dealing with the aftereffects of delivery.  You cry when you want and you hug your little guy, touch his fingers, his toes, smell his little head, tell those nurses you want to do everything you can with his care.  Try to find a "normal" for you - you will continue to learn more about Pierre Robin and you will become your son's very best advocate for care!  Give your little guy a smooch from all of us and tell him that we are thinking and praying for him!

[Cheyenne_08]

I am so sorry you are going through this! Although Ashtyn did not have very serious problems, I felt the same way when we spent our 6 weeks in the NICU. I remember crying because I felt more like a "crib ornament" instead of his mother. I felt horrible everytime I had to leave his bed side. You need to get better yourself before you can make him feel better, so please try to tell youself that you are doing all you can for him right now. I know that it feels better to cry, so don't feel guilty for doing it. I hope he gets better!!!! He is going to be a fighter, and you are stronger than you think.

[maddysmommy]

thanks everyone for the support..i keep telling myself just remember he's still a little baby and dont worry about all his problems..the surgeries they are talking about are one a feeding tube....a lip tongue adhesion..where they would suture his tiny little tongue to his front lip...or a trach to obviously let him breathe...and those are just the surgeries for now...further down the road he will need the soft cleft palate corrected anytime between 6-13months...then whatever else they see he needs...im ok with the feeding tube..when it was explained it seemed very simple and easy to use and care for..but the other two..i know will be discomforting to him..and difficult to care for..just the mere thought of always having home care nurses at my home...and always wondering..if his coloring is too blue..bc of not enough oxygen...this is my problem i dwell on things...i honestly feel if i was a first time mother i would not know 100% what i was missing..but bc this is my second..and my first baby was "normal" as the drs say...i know exactly what im missing...including the up all night...screaming baby...ect...well im off to hospital now to spend my 13 hours in the nicu while i still can my daughter comes home wed from vacation..so back to reality

[maddysmommy]

just spoke to the nurse..they had to put blake on a new breathing system his oxygene was down to 70 all night...and now he's being transferred to another hospital..i swear when it rains it pours..they say it always gets worse before it gets better..but my goodness how worse is it going to have to get?

[Cheyenne_08]

It does always get worse before it gets better!!! Stay strong!!!!

[tmv]

I am so sorry for what you are going through. Try to remember that you are going through emotional and physical healing from hormonal changes from delivery as well. Try not to expect too much from yourself. Rest when you can and eat and drink often. Of course you want to be there with you little one. Try to stay positive and remember that with technology today all things are possible. Be thankful that he was transferred to a place that has more experience in these types of issues. Also, take your moments to cry and let it all out. You really need it as you are going through some terrible scary times not knowing what lies ahead. I hope you find a good support group for pr. Take a day at a time. God bless you both.

[archer0000]

I am going to pray for you and your family, may god rest his hands on your baby's chest so he breathe at ease.  I will pray for your child to be in good health and to bless you and your family.  I am so sorry that this has happend to you and your family, Just remeber that "god is on your side" he does not give us "more than we can handle" You stay STRONG God will "show out for you and your family" I felt such a strong sense from reading your post, that I felt it in my heart to share this with you, I will keep you in my prayers Take Care