Hellobee Boards

I would always sneak Cliff bars. I agree eating take a aback seat then you're starving and even more irritable...bad combo.

@lizzywiz: maybe my husband and I are rebels but we have wine in here on the regular. My birthday started terribly with a fight with my husband on Thursday and an MRI for LB which ment 2 hours of sedation and intubation, but turned out OK. LB was fine after the MRI (still no results, arg), my mom made me leave the hospital and get something for myself on her (I got vs jammies, totally wearing them all day today), my husband got off work early and brought sushi, a friend brought cake. Although we had the worst night nurse in existence, but you win some, you lose some.

LB is still in good spirits. His numbers are still pretty high but they are hoping the ivig and new immunosuppressant are enough and hopefully giving them the weekend to improve before starting very strong, scary immunosuppressants. The MRI should make sure there are no blocks in blood vessels or bile ducts. And he now has low platelets which could mean he's developing an allergy To heperin.

So in the, no joke, over an hour it took me to write this, his numbers are back and show significant improvement! I'm cautiously optimistic, who are we kidding I'm elated and hope I'm not crushed by another turn tomorrow

@Ms.Badger: that is great news! I hope it continues. Happy birthday!

@Ms.Badger: yay, hope LB is still doing well!

@lizzywiz: woohoo, 48 hours is awesome! Long may it last. I assume you have a home suction machine? I'm not the one to ask about breaking out of survival mode, I'm still in the trenches

DS2 has turned the corner with the IV fluids and is doing so much better today. Looks like he just got extremely dehydrated, presumably from not digesting his feeds because they were increased too quickly. Theyre talking about maybe starting him on formula this week which pisses me off... After all the things that have happened with him I think my milk is the least likely problem area! But we'll see, of course top priority is his health. Thanks for being there for me guys, @lizzywiz: I am so happy you started this thread. Posting DS2's sweet smile I caught today.

@Mrs Green Grass: how's D doing? Did clearing up his ear infection stop all the vomiting?

@Ms.Badger: yay!!

They're starting DS2 on an "elemental formula" tonight at a super low rate. I feel like such a failure. They said maybe he could go back to breastmilk at some point in the future, so don't stop pumping. I just feel awful, like I've wasted so much time, energy, and money (bags, bought a deep freezer to hold my stash, etc). On the bright side I'm glad he's getting food again, I kept hearing his poor little tummy rumbling today. sigh.

@Ms.Badger: congrats on the job! I hope his numbers get more stable and going home Friday is great!

@beaker: I held out on formula for nearly 5 months, but at that point I felt like I had tried everything else. It was such a hard, emotional struggle at the time. I wrote a blog post back then titled "Breast is best, but is it really?" Basically I finally realized that as much as I wanted it (and normal breast feeding), it wasn't necessarily the best thing for LO. I did co to he to pump
Until 11 months (actual) even though he got formula every day also. It made me feel better to give him any BM at all...

How would everyone feel about exchanging phone contact info/e-mail? I know I have moments where having an extra set of ears is really useful, and would be SO happy to do that for any of you if you ever need it!

@beaker: Not a failure at all. More like a warrior-- you are working so hard for your son. His smile shows what a phenomenal job you are doing. And even if breastmilk isn't in the cards right now, it doesn't mean failure. I'm glad he'll be getting to eat again, too.
@Ms.Badger: Congrats on the new job! I hope you're getting to feel a little excited about it in the midst of everything else going on. Hope you get to be home Friday. I don't blame you for being scared of the immunosupressant, but it sounds like they really have a good handle on things.
@Mrs Green Grass: It's wonderful he got BM for that long. I had to supplement the whole time with Ellie, and only looking back do I feel really good about that/give myself credit for what I was able to do. Honestly, feeding and caring for your child is the only important part, anyway, and you definitely did that.
@lizzywiz: Glad things are going well! Let's hope it stays that way. You'll have to let me know about the books.

We are struggling with winter. It's been so disruptive to her schedule, and now she gets herself so worked up when she has to go back to school. Between holidays and snow days and being sick, she's only been AT school for a handful of days in months. Now she gets so worked up she gets headaches and stomach aches, and the doctor thinks she's even spiking a slight temperature just because she's anxious. I hate to send her to school when she's so miserable, but at the same time, I know that it's been really beneficial for her to be there, and that things will go better when she gets back in a routine. But it's hard to hear her say she hates school and is scared to go.

@beaker: No shame in crying - i think i've cried in front of every doctor, nurse, and care partner here! I think I break down 50% of the time I talk to LB's main attending. Oh, and totally cried in front of our resident on Friday because it was my birthday, they must think I have issues. Totally get what you're saying about being ok until everything changes and needing time to adjust to this new reality.

And YEAH! for being transferred to the floor! That made such a difference in my moods, you are so on display in PICU (I assume NICU is similar) and can have more privacy and alone time in your own room.

@Ms.Badger: that's encouraging! Our NICU has private rooms actually so I think the big difference will be children for neighbors instead of preemies. It's also a smaller unit with a dedicated nursing staff, so hopefully we'll have good luck with consistent nurses.

@Mrs Green Grass: yeah, I think if I don't cry or flip out on them occasionally they stop taking me seriously and stop communicating. "Delicate balance" is the perfect description!

@Ms.Badger: Hooray! What wonderful news.
@lizzywiz: Hope it's a good busy.
@beaker: Did he get moved yet? How did it go?

@beaker: I'm glad the move was largely positive! Sounds like a more comfortable space for all of you, and I'm sure it feels phenomenal to be able to have all your family together sometimes.

Hopefully he will improve by leaps and bounds-- I can only imagine how hard it must be seeing him need so much (invasive) intervention. I'm glad that he might get to go home before too long.

We are doing okay. Had a rough start to the week, but then things were greatly improved. Had some really sad news last night-- Ellie's paraprofessional is leaving. She was really perfect for Ellie. But, it's a stinky job with stinky pay, and she has an opportunity to move to California. I feel happy for her, but really sad for Ellie. Makes me wonder how often we might have to go through this. Ellie has a particularly hard time with change, and her para is really her lifeline at school, so to have that change is going to be pretty devastating. And no one bothered to let us know! I found out from Ellie sort of by chance. Looking back, I wonder if that's where some of her negative moods have come from lately. Mr. T is coming back from a conference on autism tonight, and I am excited to find out what he learned. We did pretty well here at home, and Ellie was very cooperative and helpful, which is tremendous because she really prefers dad to do certain things because that's what she is used to. She didn't even get mad at me the times that I deviated from their routine! And she was wonderful with Lorelei. We were in the car today, and Lorelei said (word-for-word), "Ellie is my special friend because she is my sister." They really do have a beautiful relationship right now. Ellie will let Lorelei hug and kiss her sometimes when she's upset and won't let anyone else near her. It's really amazing to watch how they care for one another.

@beaker: I will share some of what he learns. Yeah, Ellie's already worried it will be someone mean. I am a little, too. Lots of times people don't treat Ellie very kindly because she can be pretty challenging. Many people have a tendency to get mad at her and be "firm"/grumpy. It usually backfires, anyway. I'm hopinng they find someone else wonderful. I am still floored that no one thought to mention it to us. It's a pretty big deal in her world!

I think you'll have fun watching your sons as they get older. It's only been within the last 6 months or so that they have really turned into friends. But hopefully since yours are a little closer in age it will happen sooner for you. I just feel so fortunate that they seem to be able to play with one another instead of constantly arguing over who gets what and who touched what. There is some of that, but surprisingly little.

@beaker: Not sure. I was so floored I didn't even think about calling and asking. I'm really timid, and if they said, "Oh, she just won't have one for a while," I'd probably get nervous and just say, "Ok." I'll talk it over with Mr. T when he gets home and we'll decide what to do.

Yes-- she does expect adults to be nasty to her. And unfortunately, I know from experience that they often are. Because some of her behavior comes across in a way that seems "naughty" and so people make the assumption that she is this "bad" kid who doesn't have any limits and who gets to do whatever she wants. So frustrating. Because that typically backfires and then everyone is miserable. Her last para once told her to, "Stop acting like a brat." Yeah. It was temporary, so we didn't even do anything about it. It stinks because there is this fine line between sticking up for your child and maintaing a decent relationship with the school. We're a little scared to make TOO much trouble because if they end up not liking us things will be a lot tougher, and really, the school has been pretty awesome. This para who just had her last day was fantastic, so it will be hard to fill her shoes. I am hoping they find someone permanent soon, because I have a feeling the lady who called her a brat will be her para temporarily because she works for the school and is the only one with enough schedule flexibility.

@beaker: it's sweet, not weird, for you to think of us. I love our broviac, so much easier than a picc. Are you going to have home health care when you are home? They can help with dressing changes, cap changes, etc., however I find my husband and I are better than the nurses at dressing changes now. Ask for bio patches if you don't have them, makes dressing changes easier and keeps the opening cleaner. It's so great to be home, you and DS2 will love it!

It's been great to be home. He ran a slight fever the first night and I was terrified we were back to the er but luckily it never got to 100 so we were able to stay home. He's basically crawling which is exciting and he gives high fives! Ineed to start interviewing care givers next week and hopefully will find out my salary, I asked for a pretty high number and I'm hoping that I get it or at least something close.