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@Ms.Badger: ugh. So much to deal with! Blogging helped me a lot because I could be honest. What do you need? To talk on here? Or somewhere else? I'd love to help if I can. What's the part time job? I hope the first line meds work.
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@Ms.Badger: When I was at my lowest, I had to sort of take a hiatus from people in general. I felt like I struggled to react appropriately. I would often feel angry when people would try to be kind, or be jealous or grouchy when people shared good news. I leaned on Mr. T a lot because he was my only safe person. Which also caused some issues because I found myself releasing lots of negative stuff on him because I didn't feel comfortable or that it was appropriate to dump on anyone else. I had to really look at my interactions with him. Ultimately, I was able to find one friend who I got pretty comfortable letting things hang all out with. That helped take some of the load off Mr. T. But things have been greatly improved for us lately on many fronts. Of course, then when we do have issues now it completely blind-sides me and I don't always handle them the best. The other day I stepped on a toy of Ellie's by accident and broke the toy. I was trying to recover from almost falling (and being really confused, because I didn't want to fall on either of the girls, and I didn't know what had "grabbed" my foot) and Ellie went after me. I had a hard time getting her calmed down, and started to panic that she would go after Lorelei. Fortunately, she was only interested in me this time, and she was able to de-escalate fairly fast. But it happens so rarely now that I don't really know what to do with it. Sorry for the rambling.
I hope you get some clearer answers about what is going on with your son; I know it is harder to make decisions on his care when there are so many things that are still unanswered.
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@Mrs. Twine: I totally think this thread is the right place for you! There just aren't that many complicated issues on HB right now (which is obviously a good thing).
Appt went well. I really love my ped. He didn't gaining weight so she wants to have us try probiotics. And I'm not happy with pediasure so we are going to try whole milk with whole milk powder.... But ear infection is gone.
And I know we don't have hospital-serious issues at theorems, but I hope you don't mind me being here...
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@Ms.Badger: good luck with the interview. Many of the nurses in my hospital expect people to go back to work since a lot of babies are here for months and months. When DS2 did his MRI they had to sedate & intubate him as well, but that was when he had trouble protecting his airway so they didn't trust him to be safe flat on his back for long. They said normally they just do it right after a feed, swaddle them up, and they go to sleep since it's dark with lots of white noise. They tried first without sedation for DS2 but then he wouldnt stop crying so they repeated it later. You may want to ask if they can give swaddling/timing with feeds a try.
@Mrs Green Grass: were they able to help at all with the throwing up? I love our regular ped too, can't wait until we're home and seeing her again.
@Mrs. Twine: that sounds scary, to be surprised like that. That's kind of what I mean about snapping out of a happy lull
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Regarding severity of 'medical complexity' and this board:
I think anyone dealing with chronic health issues has a place on this board, or even people dealing with fall out/ PTSD from a long term issue that is resolved. Many, many people go through their entire parenthood never doubting that their LO will be generally healthy in mind and body- that illusion has been shattered for us and whether we are currently in the trenches or going through a good time, we need comrades!@Mrs Green Grass:
more later- LO is holding her own at 94 O2 and I have to go to work!
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DS2 had another swallow study which he failed again. I think he's regressed since his 2nd surgery and being intubated twice. I really hope he can re-learn how to swallow (he sounds all gurgly again, but isn't de-satting) so we can work on oral feeds soon.
Good news is that they're starting to talk about sending him home
Hope everyone is doing ok today.
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@Ms.Badger: I think work has its pros and cons.
I typically work full time and I find that challenging when she is not sick- managing home and work gracefully is not my forte. But we need the money and there ya go.
When she is sick in the hospital, or we just spent the night in the hospital, or we have the follow up visit to the pediatrician after the hospital, or the specialist appt. or whatever, it is definitely hard. I never want to miss one of her appts( or rounds when we are in the hospital). I struggle with keeping up with work and this past month has been really bad for calling in, which endangers my job.
BUT, when I am at work? I am focused and productive and useful in a way that I can't be for her, because her illness is the kind you just have to hope her body and meds do what they need to do. At work I don't feel helpless and that is a relief. Work also gives me a reason to take care of my grooming and whatnot.
While I would love to work part time, I don't think quitting work altogether would be good for me.
Good luck with whatever you decide! -
@beaker: do they have an SLP doing any oral sensory stuff with him? Fingers crossed for oral feedings soon!
Going home! YAY! (to be honest though, I am nervous at every discharge)
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@Mrs. Twine: I am negative with my husband regarding how hard it has been and I didn't realize it until a couple days ago when he said, "It sounds like you hate our life!"
Something I have to work on. -
@lizzywiz: I have honestly had times where I've hated my life. I try to sometimes have interactions with Mr. T that aren't loaded or shadowed by regular life stuff, and that seems to help. And I also try to take time to recognize and thank him for things I appreciate or love, no matter how small. I find that in our darkest times there has still been some good, and we all do better when we see it and magnify it just a little.
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@Ms.Badger: @Mrs. Twine: I really relate to what you both are saying about having a hard time relating to people or wanting to deal with people during hard times.
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This thread is so cathartic for me, I feel so validated that you guys are right there with me going through what are some ugly thoughts and emotions. Its nice to lay it out here and not to DH because I honestly need him to stay positive to bring me back from the dark side sometimes.
My 30th birthday is Friday and I will spend it at the hospital, probably won't even See DH, and it makes me cry. I always loved my birthday and just the little sspecial things people do for you and this year, I'm not looking forward to anything and just feel bad for myself. I'm just full of ugly emotions lately.
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@Ms.Badger: Can you go get an ice cream sandwich from Diddy Reese? Have you been there?
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@Ms.Badger: my bday was this past Saturday, I know how you feel. That plus Christmas in the hospital was the worst. I wish I could say something to make it better but I've got nothing
I did pull away to spend some time on myself, got a haircut and a pedi, maybe you could try that?@Greentea: I've started being overly sensitive to people complaining about being "done" being pregnant, when I wish so hard that I could've made my due date. My SIL just had a baby and it's going to be tough being around them, since thankfully they have no problems at all. I hate feeling this way and wonder how long it's going to last... Am I always going to be jealous of people who have an easier go of this whole parenthood thing?
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@lizzywiz: what's SLP? He's seen some occupational therapists. They mostly just say work on the paci (which he's a rockstar at now)
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@Mrs. Twine: I've been through some dark places too. I feel like theres no safe place to talk about it. Like, honestly, if I had a crystal ball and known what would happen, I would have stopped with DS1. I only ever see people saying "oh, no regrets, I wouldn't change anything about my child" when I wish I could change so much.
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@beaker: That's hard, isn't it? I've been there. It is a very, very hard and humbling thing when you can't see your way clear to a life that seems worth living for your child. I've had moments where I've thought that Ellie would have been better off had I just not had her. SO much pain and suffering for her, sometimes. But, she also really loves her life a lot of the time, and our lives wouldn't be as rich without her, even though they would be a lot less complicated. In the end, I can't really regret it. I do think we might have chosen to not have additional children (actually, I am sure of it) had we known how bad things were going to get/be some of the time. But I am so glad we also have Lorelei.
It's okay to feel those feelings. It's even okay to talk about it. I hope that this can be a safe place for us to share some of that darker stuff, because I know how much it can eat you up to carry it around and have to keep it hidden from everyone.
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@Ms.Badger: I would send you some flowers! Happy (almost) birthday! Is there something kind you can do for yourself to mark the day? Even something really small? I often forget to be kind to myself when I am down about things.
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@Mrs. Twine:
*internet hug*
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@beaker: @Mrs. Twine: I'm so glad this thread is a good, no judgment place to give voice to the scarier thoughts in our heads. I understand both of your feelings and have often thought if we had just waited another month to start trying or if we hadn't tried so hard right away we could have a different baby without all these problems, but I know I can't go back and I love my son, which is why it's so hard to see him go through all this.
LB is having a much better day both with sleep and mood, I think the steroids are wearing off, thank god. Hoping today's treatment will work but they are pretty sure he'll need strong immunosuppresents. MRI has been scheduled for Friday.
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@Ms.Badger: yay for a better day!
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@beaker: an SLP is a speech language pathologist. They sometimes work with kids who have oral disorganization or sensory issues (oral aversion), either developmentally or because they have had medical intervention that impact typical oral sensory/motor development.
My dark place is full of a rage like I have never known. There is no perspective, gratitude, or silver lining when I am there. I come from a large family of large families, I live in a city, I spent significant portions of my career working with children and I NEVER met a kid who has what my kid has (actually, she doesn't even have a diagnosis yet). On those days all I can think about is how it isn't fair and I imagine a different life with all the roads not taken. A life where I am not a wife and mother. Not proud of those days or the dramatic bend my brain takes but it is what it is.
Could use some positive vibes: she is OK but was up coughing all night (that's good because her lungs are clearing) but means no sleep for mama, again. I gotta drive outta town and put 10 hours in to make up for missing Tuesday. So 12 hour plus day, hour and 1\2 away from her, AND no hellobee access....wth? Lol.
Good luck, ladies! May the force be with you today!
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@Ms.Badger: @beaker: @Mrs. Twine: @Mrs Green Grass: @lizzywiz: you people are some of the strongest people. There is nothing I now cherish like LO's health. Everything is so ying-yang. I have been through a lot of hard things in my life but it seems like LOs should be excluded!
@Ms.Badger: good wishes for your interview!
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@Mrs. Twine: I hope your support group is able to reconvene. That must really help to have others to relate to.
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@lizzywiz: Is there a way your family could swing one of you not working? Honestly, I would not be able to hold down a job even if I wanted to because of all the time off I would need to take to deal with things. We had a period not too long ago where it wasn't unusual to have to pick her up from school because she was just not being cooperative there. Or maybe you need work as a break/safe place. We started working with a social worker about a year ago, and she was able to help us find resources that we weren't aware existed. There might be programs in your area that would allow you a little more help or freedom if that's something you think you could benefit from. If Ellie qualifies, we might be able to get a behavioral aide for her. There are currently none in our geographical area, but that could change.
Regardless, hope your day goes okay.
@Greentea: I hope so, too. It's really hard for most people to understand what it can be like to have a kid who can get that out-of-control. Before it was MY kid, I would have probably thought the idea of not being able to handle your six or seven year old on your own to be pretty ludicrous. Most of the time we do really well these days, but then there are times (usually out-of-nowhere) that are really intense and scary and dangerous. I feel ridiculous asking for or feeling like I need extra "help," but in those moments it is almost impossible to handle it safely on my own.
And I agree that kids should be exempt from these sorts of struggles.
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Ugh. Not having a good day. Yesterday the NP told me there was nothing holding DS2 back and he could go home Friday. Of course today everything has changed. I noticed yesterday the whites of his eyes were looking yellowish, and then they saw that his bilirubin was high, and they did two abdominal ultrasounds last night but no one is telling me the results yet, and today while I was there, he had blood in his urine, so they had to use a catheter to get a sample, which he hated. Initial result for a UTI came back negative but that could change. Now when I called to check apparently the GI docs (who need to clear him before he can leave) are unhappy with his weight gain? The nurse made it sound like they would hold him longer for that. I don't know where this concern was when they had him NPO for six freaking weeks.
I told myself not to get excited for him to be discharged since I know things change but this just sucks. /rant.
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@beaker: Aw. That's awful. He had to be NPO for WEEKS. Poor little guy!
Maybe they would cut a little slack if you gently point out that some of the medical decisions made probably contributed to his weight gain? I'm guessing if he is home he might be more comfortable and gain more quickly. Do you think they would be open to you renting a scale and doing weight checks at home? I'm so sorry that things changed in a negative direction for him. I know it must be so heartbreaking to not be able to have him at home.
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@Mrs. Twine: when he was discharged initially we had a home health nurse come several times for weight checks. I will advocate as best I can, but I won't get to talk directly with the GI folks. Developmentally, the hospital is the worst as well, but that's their last priority
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@Mrs Green Grass: what is duddy Reese? I'm intrigued. I did pick up way too many sprinkles cupcakes, I may share...
@lizzywiz: Hope you made it through your long day!
@Mrs. Twine: hope you find a great aid, good support makes a huge difference.
@beaker: what an awful day. Doctors so not do a good job talking to each other, so if you're hearing different things make sure they all get on the same page. Crossing my fingers for home!I think my job interview went well and while I was home I was even able to get coffee with a friend! It was also really nice to have a night in my bed, only having to wake up once to pump.
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@beaker: oh man. So up and down. It is like you and @Ms.Badger: are in hospital hell
@Mrs. Twine: that would be challenging for anyone. I know it is not the same ...but my sister has bipolar disorder with a mixed state where she gets angry and energy instead of the highs with energy. For what it is worth... our mom would make fun of her... it was not a good environment and I know your daughter is better off to have a mother that cares and invests and is working on things with her. Really. Hugs.
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@Ms.Badger: oh happy for you!
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@Ms.Badger: Diddy Reese is a cookie shop basically...really close to the hospital in Westwood. You could ask any oft and they'll know it. 25 cent cookies, $1 ice cream sandwiches (at least last time I was there). There's usually a line out the door...it's basically legendary. Perfect for a birthday treat! If you need any other tips for Westwood, let me know!
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@beaker: that really sucks! Feeding kept us in the hospital an extra two months... Does he get OT in te hospital? Can you bring stuff in like a playmat or anything? I agree it's best not to get set on any discharge date...it can take awhile or it can suddenly pop up and be a day or two away. I hope they figure out what is going on today quickly.
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@Mrs Green Grass: OT had been working with him, but since he failed another swallow study it looks like we're back to "keep working on the pacifier mommy!" Which is annoying since he's great at it, and they acknowledge that it's only tangentially related to the suck/swallow/breathe pattern he needs to learn for eating. I've brought in a mirror and musical/moving mobile, and the nurses dug up a baby Einstein aquarium and bouncer for him. If I brought a play mat it'd have to go on the floor, which seems beyond disgusting
Still no word on why he had blood in his urine. Hope we get more answers today. Have a good day everyone!
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@Mrs. Twine: we have been talking about what we can do. I am the primary breadwinner but he carries the insurance so we are in a bit of a catch 22.
Also, we have kind of been in denial. My LO and Ellie are the same in that there isn't a lot of predictability to when danger strikes, lol, ( so I know the feeling of dread that lingers days after a surprise attack) She has been sick since November but prior to that she would be doing fine and suddenly just wake up in the middle of the night with breathing difficulties. It would be a horrible 24 hours but it would pass. She got sick the first time at 10 months, and then not again for 3 months, so when the episodes starting coming more frequently we just kept thinking they would stop again at some point. Even recently, just a couple weeks before I started this thread, I though 'It is finally over!"...but not yet. And, actually, this thread is really helping me be ok with that -
@beaker: Lame. I am so sorry to hear about the delay in discharge and the blood in urine. And NPO for 6 wks?! Poor LO. Are they allowing water? I am familiar with a water treatment for NPO adults to practice swallowing but not sure if it applies to pediatrics. http://www.kentuckyonehealth.org/frazier-water-protocol
It is crazy how a different Dr changes everything, too. There is one Dr. at our hospital guaranteed to keep her at least 2 days when we go in and another who is always on the fence about even admitting her
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@beaker: have you tried thickening the feedings? That was the key for Dylan. Toucan add rice cereal to milk or we used enfamil ar which is already thickened. If you want to talk about feeding, I'm your girl. It's still our #1 issue.
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@lizzywiz: and flu season must having something to do with it, no? It's really hard having such unpredictability!
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@lizzywiz: That's got to be frustrating about the admissions. When Ellie had RSV we lived about a 45 minute drive from the hospital. She stopped breathing one time and started turning slightly blue in the face-- they still wouldn't admit her. They kept saying, "She'll probably be fine at home." She was, but it just made me SO mad. It is really challenging not knowing when something is going to happen-- and I'm sorry that your work situation is so tricky.
@beaker: Could you bring a pack 'n play or something like that to have a nicer "floor" surface for him? Or maybe get a really big picnic blanket type thing that you can lay down and then put his activity mat on top of that? Sounds like @Mrs Green Grass: had some great ideas about the feeding and suck/swallow. Obviously I don't have any experience there.
Ellie's birthday was today and she had a really good day. I, however, decided to stay up far too late last night and am paying for it through the nose.
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@Ms.Badger: were you able to do anything nice for your birthday?
@lizzywiz: @Mrs Green Grass: his problem is aspirating (even with honey & nectar thick) so they don't want to give him anything by mouth. He has improved a lot though since in his original swallow study he just let everything slide into his lungs without coughing or anything. This time he had a delayed swallow, where he holds it in the back if his throat for a moment, and at that point a little goes into his lungs, although he coughed and tried to bring it up. I hope he just needs more time to figure out the timing properly. I plan to give him some small amounts of water/breastmilk for practice when we're home. @Mrs Green Grass: did you find any particular bottle/nipple style that worked best?
@Mrs. Twine: a pack n play is a good idea... His room is big enough. Hmm. Happy belated bday Ellie!
Unfortunately DS2 is sick. He got very dehydrated, was having diarrhea, so poor thing is NPO and on TPN through the weekend. They aren't sure if he has some sort of infection (his labs haven't shown anything yet) or if the feeds went up to full volume too quickly, or what. It sounds like the GI docs want him transferred out of the NICU and into their wing on Monday, so we'll see what happens. I feel like I jinxed him by telling people he was doing well. My real fear is that he'll develop NEC again, since the last time he was acting this off was when this whole thing started. Argh. I hate to just dump on you guys but my life (and poor DS2'slife) just sucks right now.
more later- LO is holding her own at 94 O2 and I have to go to work!
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