My baby is in the hospital - Page 4

[Ms. Mom]

Thanks for the update Lex, much love to you and your family - I'm glad you have Lena there to help fight for your little guy. It's so hard to fight alone when you've recently given birth and your still healing.

[Arwyn]

Lena rocks.

When my dad was in the hospital nearly a year ago it was kind of bewildering the number of tests they ran, and we kept asking "so what's this for, and why are we doing it??" It was so frustrating. Nice when we finally did start getting answers though.

I'm glad it's not aspiration!

Hang in there. We're all thinking of you.

[LavenderMae]

I'm glad it's not aspiration too! Way to go to your wonderful wife!!
I'm no expert but it seems that he is nursing plenty, since it's so often.
I hope you get some answers soon and of course that it's nothing serious!

[lexbeach]

I realized that I hadn't updated in a couple of days, so I thought I would. We still don't know anything, Zeben will be three weeks old tomorrow. He is still breathing really fast most of the time (though I have noticed that in the evenings, when he's sleeping, he slows down to 60 or so, which is the high end of normal). He has been nursing much better the past couple of days. I am anxious to see what he weighs (to confirm that he's getting plenty). I think he just got overwhelmed by my supply for a little while, but I got it under control, and he's now able to stay on my breast longer at each feeding, and even do some comfort nursing.

I feel totally torn between thinking that he's absolutely FINE (which I do sort of feel, in my gut), and thinking that we should go to Children's Hospital in Boston (2 hours away) where I believe we will get better care. The lung doctor we've been working with at the local children's hospital is very hard to get information out of. I still have no idea why we did the tests that we did last week, or what the fact that one of them was normal means (we still haven't gotten results from the reflux test yet). It's really frustrating. I keep asking "what's the best case scenario, what's the worst case scenario?" and no one will answer either of those questions. I just want to have some ideas of what they're trying to rule out/in!

This last stay at the hospital was far superior to the first one (which totally traumatized me), but I still felt like no one knew what they were doing. Specialists were coming in to do tests, and they'd ask how the baby was, and I'd say, "oh, he's great aside from breathing so fast," and they'd say, "he's breathing fast?" And I'd be like, "That's WHY WE'RE HERE!!!" There definitely seemed to be a major lack of communication going on. One of the specialists then responded, "well, the test I'm doing will tell us whether he's doing _____ [I can't remember what], but I'm sure that even if he IS, that wouldn't be causing him to breathe fast." So, basically, they were testing my baby for things completely unrelated to the breathing issue without giving me any explanation as to why :

I just want them to tell us that we can stop worrying. It's so exhausting, worrying so much. I just want my baby to be okay.

Thanks for listening.

Lex

[twogreencars]

Oh, you poor mama! I'm sending you strength to get through this!

[Paddington]

Another random visitor... Poor mama... And your poor boys... Keeping you in my thoughts and prayers....

[lilylove]

I can't begin to imagine how hard this must be for you, Lena, and your other children You are all in my thoughts.
It's awfull that you are not being kept in the loop. I firmly believe that parents should not only be told what is going on at all times but their input should be asked often! : I'm so sorry they are not giving you the respect and care that you and your son deserves

[LavenderMae]

I'm sorry you still don't have any answers, how frusterating.
I'm glad he's nursing better, YAY!!! Thanks for updating , I've been thinking about Zeben!

[kdtmom2be]

LexBeach, just cruising through the forums and have been reading your posts on this thread off and on since you first went to the hospital. First off, hugs to you, it must be tough not knowing what's going on.

Now my advice, take it as it is, from a stranger who knows only what you've written here.... my mother is a paediatric nurse, has been for 30+ years. If she were to read what you've written she would tell you a) not to worry too much, it sounds like things are starting to even out a little bit for your boy and hopefulyl things are progressing and he'll be doing fantastically shortly and b) go to Boston, if only for your peice of mind, and get him checked there. There are lots of good doctors out there, but there are also lots of mediocre ones and even some downright crappy ones. If they aren't telling you what you want to know in a way that you understand, find someone else to tell you.
My mom comes home frequently telling stories of incompetent doctors and other nurses. Some of it you can chalk up to poor people skills, some to inattention to detail and some to a lack of communication between doctors, patients, thier families, nurses, etc.

Keep asking questions until you get the answers you want and if they can't give you answers then go somewhere where they can give you answers.

Good luck, you'll be fine and so will your little boy

[indeospero]

Hi Lex... It just occurred to me that you must have had your baby by now, and when I searched I the forums I found this thread... So sorry to hear that things have been so difficult. Just wanted to send you my best wishes.

It sounds like you've been going through a heck of a lot, and I hope that things even out for your family soon.

I'm nearby, so if there is anything at all I can do for you, please PM me and I'll give you my phone number. Really.

Have you considered taking sage for the oversupply?

Sending sweet Zeben healing vibes and wishing you the best.

[lexbeach]

Another small update

We saw the regular ped. today, and got to weigh Zeb on the same scale (I'd been going crazy with having him weighed on so many different scales, none of which was showing a decent gain), and found out he'd gained 12 ounces in the last week! So, I'm feeling great about the nursing situation now. He is now a 12.5 pound chub! No wonder he's outgrown all the size small diapers!

The ped. ordered a head ultrasound to check out the part of the brain that controls breathing, though he's doubtful that anything will show up since Zeb doesn't have any signs of something going on neurologically. He said he'd be totally willing to send us to Boston if that's what we want to do. At the moment, we're thinking we will go because we're hoping that they will have seen something like this before there. But I really hope we can do it all outpatient because I can't handle the idea of another night in another hospital.

We are also going to start getting some cranial sachral work done on Zeb. He had some done right after he was born, but nothing since then. Maybe he's breathing fast from the trauma of the c-section and the deep suctioning (for meconium)?

Thanks for the hugs,

Lex

[Ms. Mom]

Lex, thanks for the update. I kept meaning to PM you over Thanksgiving. I'm so glad he's doing well and that nothing serious has been found. Much love to you and your family.

[AngelBee]

:

[citymama]

Hugs and good, healthy breathing vibes to little Zeb.

[lifescholar]

Lex, my son was deep suctioned for meconium, too, although we did have a vaginal birth...he, too, was breathing fast the first day. Someone from the NICU came to assess him, and they took him for a bit while I slept, and when they brought him back, they said he was fine. I never noticed the fast breathing again...I guess we were lucky!!

Wow, he sure is a big boy! My son was a very fast gainer in the beginning too. He started at 8 lbs. 11 oz., but was already 13 lbs. at 1 month! You must have Super Milk!

I hope everything is fine...it does sound like he's doing fine otherwise...hopefully a specialist will be able to give you some answers, or put your mind at ease...thinking of you and Zeben (and Lena and your other 2 gorgeous boys!).

[lexbeach]

Good news FINALLY!

We spent several hours at Children's Hospital in Boston today, and the doctors here think that Zeben is FINE!!! He's *still* breathing super fast, but is doing so well otherwise that the doctors are pretty much convinced that there is nothing serious going on. They actually think that the reason he's breathing fast is because he's so BIG! He has so much weight on his chest and then such a big belly (he weighs 13 pounds and is only 22 inches long), and those things combined with the low muscle tone that all newborns have is making it hard for him to take deep breaths. They think he will outgrow it with time. We have to go back for a follow-up in a month, but for the most part we're allowed to stop worrying now!! Woo-hoo! I feel like I missed out on the first three weeks of my baby's life because I was so lost in anxiety, but now we just get to enjoy him (and it's perfect timing because he's just starting to really be awake a lot and he is quite enjoyable).

There is still some concern about what could happen if he were to get a respiratory infection, so we'll have to be pretty paranoid about germs, and we're going to try and get the RSV shot for him. But, after the head ultrasound on Monday (which will almost certainly be normal), NO MORE TESTS for at least a month! Today they tried to get a blood gas at Children's, which involves taking blood from an artery. They tried six times over the course of an hour, and it was horrible, horrible, horrible, and all for nothing. They never were able to get a good draw, and eventually decided that it wasn't that important. I cannot watch my baby go through another painful procedure.

Thank you all so much for all of your support in the past few weeks. It has meant so much.



Lex

[annettemarie]

Oh, thank goodness!!! I've been thinking of you all, and I'm so happy for the good news.

[lilylove]

That's wonderful!!!!! :

[LavenderMae]

YAY!!!! Great news!!!!!!

[Arwyn]

Lex that's fabulous!!!! : Go enjoy that baby - and post more pics for us!