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Sigh....

Posted by on May. 4, 2014 at 9:49 AM
  • 22 Replies

So Poor Wyatt cannot catch a break. He has Hydrocephelus (which is water on the brain/spinal fluid) at this point he doesn't need a shunt, but they are watching him until he "goes home" (if he goes home) to figure out how severe it is and if it NEEDS a shunt or not.

His PDA is causing enough issues, they are talking about another surgery on monday-wed depending on if he stays stable enough to wait a couple more days, i'll be talking to the surgeon this morning to figure out what our options are and make a treatment plan that will result in a surgery that again, has super high risks for his survival.


Zeke is not responding to the antibiotics yet, he's still fighting off infections and they keep clearing it out for a day or two, then it cultures positive again. His blood pressure has gone up and down a bit too but his swelling is much better.


I had a really shitty day at the nicu yesterday and didn't get their 2 week pictures which greatly upset me, i'm going to try to get them today.

The only good news is my milk has started having let downs and finally is responding to the pump. I'm only averaging about 1oz to 2oz right now per session, but were getting there and it's finally getting more consistant.... Even under stress I'm getting close to an OZ now if I'm patient - and on a good pump session, I fill 1-2oz in 15 minutes with both breasts. (I'm only using 1 pump at a time, so about 7minutes on each side.)

My body's slowly remembering what to do. I thank god for small mercies.

I feel helpless, I am trying not to blame myself with all this guilt of stuff, I know logically it's not my fault, but that's another blog, I'll deal with those emotions later when I have time to actually write things down coherently, I'm tryint cooperate with the nicu nurses and feel selfish and want to spend time with my babies because I don't know if it will be their last, and feel guilty because I know sometimes it's best to not touch them... but I sitll have to "ask" even if I know they'll probably tell me no. I can't help it.

I know it's an emotional rollar coaster, but I wish the nurses were just a little nicer sometimes... they act defensive sometimes when you ask them questions, and no matter how hard I try to accomodate them, they still push me away from my babies. I know it's their job to put the needs of my babies first, but I just wish they could be a little more compassionate about it.

I left in tears yesterday to the point the doctor called me to check on me and when I told her that no, I was NOT okay because of X and this is how I wanted it to be handled in the future (which she agreed was reasonable) she still got really defensive about the situation. I'm honest, but I didn't take it out on anyone. Again, all I asked is to have them tell me when to come back, if your gonna kick me out and make me stand around for long periods of time when I'm still healing and my feet swell up like a ballon and feel like i'm walking on gel packs in my feet because of swelling and fluid retention, just tell me when to come back instead of sticking me in the hallway to stand there helplessly for hours. It's easier to say "come back in 20 minutes" and I can find something to do for 20 minutes and just come back. 

I'm not unreasonable, but the lack of good communication, or compassion is really going to be what finally makes me snap at someone. I'm trying so hard to meet them half-way and not get in their way... They can at least communicate better with me so we can work together with out issues that make things harder for everyone invovled. I'm not unreasonable - and I don't blame them.. I know they are used to parents who snap and rage and beat them up emotionally, but I'm not THAT parent.

I'm trying so hard to work around my sensory issues due to my autism - being in that nicu with all those flashing lights, beeping, and changes that happen every 2 minutes is really hard for a normal person, and it's 100000000000x worse for an autistic person, and I'm doing my best to block it all out and focus on those babies and push through any sensory defensiveness I have. It's also one of the reasons why I can't stand there not focusing on my babies for long periods of time. If I can't at least distract myself by looking at them, for my own mental health, I have to go somewhere quiet until I can and am allowed.

Being around all those people is also difficult for me. Especially when I can't read body language, or interpret if things are okay, or if they are just placating me so they don't have a scene on their hands because of how they are taught to deal with parents. I don't like the wishy-washy words the doctors use to say "We aren't sure" or "I don't know the answer" - I'd rather just have blunt communication because then I know where I actually stand with everything.... But I know they are used to trying to keep parents calm in these situations while they figure out the answers... I'm just not most people.

I know they are doing a good job, I'm going to do my best to let them know I feel that way. I talked to another nicu family last night and they were raging about the nurses and how they are being treated with their 32 weeker, and i know that based on how they were reacting when my nurses are behaving the same towards me, that they are used to parents threatening them and being upset all the time... I can sympathize with those parents, I understand how they feel, I just also know letting emotions control me makes these situations worse...  And I can also logically understand why the nurses get so defensive and rude sounding in trying to do their job. I just wish they could understand that I won't act that way towards them and it's okay to ease up on me a little.

Wishful thinking I guess.

I have other blogs i'll be writing about the processing and emotional crap I'm going through, but this is what it is right now. I have a lot of guilt and self anger that i'm working through even though I logically know it's not my fault. I'm doing my best to be patient, and stay out of the way and be supportive of my team - I know they are doing a good job and it's out of my control right now, and the only thing I can really do is just be encouraging and supportive of the people who take care of them right now.

I just feel so helpless to comfort my babies, I feel like they don't even know who I am, and a few of the situations have made me feel like I have no rights to my babies because the doctors and nurses just need to keep them alive and I can service the situation the best by just staying out of the way until they are bigger.... so i've been trying to do that. I drop off my milk fresh daily, try to spend about 30-1hr with them and just get out of their way so I don't make their job harder.

I know when they are allowed kangaroo care, i'll be there 8-10 hours a day holding them and leanring how to take care of them so I can DO most of the stuff myself under the nurses supervision. But I also know I just ahve to be patient until we get there.

I'm going to take my daughter horse back riding today for a distraction. I also can't wait until I can bring one of my mastiffs here with me to help me cope so I can love on her, and work on her service dog training stuff for my autism so I can take her with me everywhere that's NOT the nicu to help me cope with the other stuff so I'm more relaxed on a daily basis and can process and handle the stress of the nicu better when I'm alone my relaxing and easing my stress levels in other environments and areas so I can delegate brain power better.

I need to be out of this room and doing stuff with people to keep my mind of this shit until I CAN be with my babies and touch them more on a regular basis. I can't just stand there feeling absolutely helpless. It makes it worse for me. I do what I feel I can do, and then I need to stay busy - my daughter being with me is a godsend. It's the reason I keep pushing myself forward every day. She needs me to be okay too. It helps having her here to ask for hugs, and if she didn't ask for 3-4 meals per day and snacks, I probably would be forgetting to eat.

She makes me keep us on a routine that helps me function better. If I take care of her needs,it helps me remember to take care of mine.




by on May. 4, 2014 at 9:49 AM
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Replies (1-10):
nrsmama4
by Jamie on May. 4, 2014 at 9:56 AM
1 mom liked this
Oh mama, I search, but I have no idea what to say. I hate that you, that any mother goes through this. I'm sorry :( thinking of and praying for you.
MammaKoi
by on May. 4, 2014 at 10:02 AM

Your very strong and I am praying everything works out for everyone to be okay. When my son was in the NICU i didn't listen and would rub my son's ear all the time. He's now 6 and askes me all the time to rub his ear. The only difference my son was born at 32wks. He was there for 3wks and on oxegen for only a hour. He had a horrible blood infection or so they say from those cultures but I think it honestly was off and on contaminated since there were a few cultures that were just fine. I even regret letting them do a spinal tap on him, he still has the gap in his spine where they performed the procedure. Hang in there mamma! 

JenG20
by Gold Member on May. 4, 2014 at 10:04 AM
1 mom liked this
Oh mama. I'm sorry you're dealing with issues with the nurses and doctors. I'm sure they sometimes forget there's a scared parent needing answers and comfort just by being near their babies. I hope things get better for both you and the boys. I'm sure set backs are common but hopefully for every step back they take they'll take two steps forward! Will be praying and thinking of you all as usual!!!
ele2837
by Erika on May. 4, 2014 at 10:08 AM
1 mom liked this
I'm glad your daughter is there to help keep your mind straight and keep a routine going. I hope that everything goes well with Wyatt needing another surgery. Praying for your family. I hope the nurses start communicating with you better. That has to be so emotionally trying.
Janis_1975
by Janis on May. 4, 2014 at 10:12 AM

((hugs))

thurstensmom
by Beth on May. 4, 2014 at 11:42 AM
1 mom liked this
So sorry things are rough at the moment :( glad your daughter can be there with you to keep your routine, I find my kids help me in the same respect with my ADHD I thrive on a routine and without it I tend to over look things like eating and keeping up with daily life...hang in there, I hope your nurses will come around ((hugs)
yoali305
by Bronze Member on May. 4, 2014 at 11:46 AM
Im so sorry your going through this hugss hang in there mommy stay strong take it day by day god willing the babies will be getting bigger and stronger and things will fall into place. Glad you have your babygirl to keep you strong. I really hope the nurses start being nicer and more compassionate towards you. They should know you are going through a lot and all you want is to be there for your little boys they should understand that. Your not asking for much just better communication. Sending you lots of hugs and keeping all of you in my prayers.
kajira
by Emma on May. 4, 2014 at 12:05 PM

Well, I walked out in tears, didn't make a scene and didn't get upset with them. I told the doctor how  I felt and then explained what I needed and my demands aren't unreasonable.

The nurses were much nicer to me today. It's just this was a whole net set of nurses who didn't kno wme, remember how I said the first of th emonth they switch big time with all doctors, nurses, residents, etc. 

So it's a brand new set of people who need to get to know me. I'm sure it's not easy for them either to have so many patients.

Quoting yoali305: Im so sorry your going through this hugss hang in there mommy stay strong take it day by day god willing the babies will be getting bigger and stronger and things will fall into place. Glad you have your babygirl to keep you strong. I really hope the nurses start being nicer and more compassionate towards you. They should know you are going through a lot and all you want is to be there for your little boys they should understand that. Your not asking for much just better communication. Sending you lots of hugs and keeping all of you in my prayers.


kslawmama
by Silver Member on May. 4, 2014 at 12:23 PM
Hugs!
veraxaudeo
by Ashley Nicole on May. 4, 2014 at 12:29 PM

big hugs! I wish I knew what to say though... :/

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