I feel like nobody cares, I don't feel like a mom :(

[garnet]

Nate was born one week ago. He has been in the NICU ever since. This is crushing his father and I. We've spoken about it to friends/family, and everyone just flat out ignores that part. All they talk about is how cute the baby is, they want more pictures, they want to meet him... Well, I would like my baby out of the isolette! I would like the feeding tube out of his nose! I would like to bring him home.

It's like they just flat out ignore his struggles. I never hear, "how is he doing" or "do you know when he'll be home?" It would be nice if it felt like people cared about our baby, and not ... this new novelty that can be dressed up or something.

I'm not doing super well, my ob already put me on zoloft for ppd, and i'm taking klonopin wafers for anxiety as needed. My heart is just broken. My hour a day spent with him is not enough. His pediatrician is an ass. Because we have medicaid, he is our only option until Nate is out of the hospital.

He has overcome every single problem he had, except for his feedings. They say he has suck/swallow issues. I don't know that I agree. When I feed him, he does just fine, it's just that he goes to sleep too fast. He's lost weight, down from 4 pounds 6 ounces to 3 pounds something. He spits up a bit more than he should. They do most of his feedings by feeding tube. I breastfeed once a day. (My milk is not in, although maybe it is today, ouch, but I know he's been getting colostrum.) He latches on like he's been doing it for years. He prefers breast to bottle.

I just don't know what to do. I'm missing all of his firsts. I feel like the HG was all one big nightmare... I wake up and there is no baby. They refuse to give any sort of timeline or anything for his release, they wont tell me what they are going to try to make this situation better. The nurses are MUCH better. It's just the damn doctor that is such an ass.

Anyways, thank you for reading all of this. I hope you all dont mind that I'm once again turning to you for support. :/

[garnet]

Oh, I forgot to mention. My husband called Dr Ass today to try and get some answers. The doctor basically says that Nate should have been home by now. He SHOULD be able to finish a bottle by now. He would be 37 gestational weeks now, and is basically just "slow" compared to other babies. And that was all he would say. I want to kick him in the balls until he somehow finds it within himself to understand this is our little boy, and we are scared and just want to know what is going on. What can be done. What we can do. Being told our baby is slow does not help anything. GEEZ.

Somewhat off topic, my "slow" son took the feeding tube in his tiny fist and yanked that thing right out. I think he agrees that it's time to come home. He is amazingly strong, you wonder where it comes from in 3 pounds of baby!

Honestly, how am I supposed to get by knowing my little peanut is alone in a box in a big scary hospital?

[caleighbelle47]

I'm so sorry you have to deal with having a baby in the NICU. It sucks and is so frustrating especially when the only thing keeping them there is eating.

We pretty much got the same response when my son was in the NICU, the doctors won't give any timeline as to when you'll go home other than "around their due date." There's no easy answer because babies tend to do their own thing and I'm sure the doctors don't want parents to expect something and then be let down. Usually once a baby gets the eating thing down though they go home pretty quickly, but the wait before then is torture.

There's not a whole lot you can do but try to be patient. I know with my son I didn't have trouble feeding him but then the nurses would say they had trouble. Some do better when being fed by their mothers so if you can try to be there for as many feedings as possible that might help. It wasn't really an option for me though as we lived an hour away from the hospital.

And I'm sorry your family isn't more understanding. A lot of people just don't get what it's like to have a baby born early. They hear the baby is going to be okay and think that's it. And it's really hard to feel like a mother when you can't take your baby home and most of the care is being done by nurses. But once you get him home it will all change. He's super cute by the way!

[nekorachan]

*HUGS* i can't even begin to imagine what you're going through being in the NICU.

if Dr. Ass won't tell you what's going on, ask to look at your son's chart. then write down what you don't understand and look it up online. also, call the hospital and report the doctor's behaviour. he'll get in trouble and you might be able to get a more sympathetic doctor / nurse.

as for BF, Jared was/is the same way...i have to pump because he almost always falls asleep on the breast (and he's 4.5 months now...) if pumping is an option for you, i suggest using the gerber Nuk bottles...the nipple is shaped like a BF mom's nipple. Jared preferred breast to bottle as a newborn, but took these bottles with no problem. funny thing is i sent hubby to the store for bottles and a pump and he comes home with the gerber because of the nipple shape...lol.

[garnet]

Thank you Angela. I know you're right, patience is my only choice. I guess I'm just frustrated, and PP hormones are probably in full swing too.

I don't know why I never thought the NICU was possible. I just assumed the baby would be late, and thats pretty much how it played out in my head. HG was so bad and not letting up, so obviously it would last as long as physically possible.

I guess I need to stop letting other people get me down, too. I let other people get to me my whole miserable pregnancy too, need to stop it!!!

Thanks again.

[aaronsmommy]

My son was born at 35 weeks and spent 3 weeks in the NICU, so we were at exactly the same spot as you are now at the same adjusted age. "Should be home by now" is crap, some babies are just different (and they call them "wimpy white boys" in the NICU because they just act premature for longer - but it doesn't mean there is anything wrong with them and it certainly doesn't mean they stay that way!)

I found the feeding issue frustrating as well, and my son also loved breastfeeding and was comfortable with that, but he always hated bottles so they had a hard time getting him to take them. One day he didn't take any of his feeds and the next day he took ALL of them and came home the day after, so although it is frustrating, it does end, and that is why they can't really give you a prediction of when it will be. I would burst in to tears whenever anyone would say "baby" those first weeks, but was great as soon as he came home.

I hope he is home with you soon!!

[garnet]

Thank you all. As always your support means a lot to me. It's so nice to have somewhere to come, be around friends, and know you all really understand. I'm listening to every word you guys are saying, and I know you're right. He will make his own timeline, and I just have to deal with it. Thankfully the NICU nurses are awesome, so I tend to go through them as much as is possible to avoid dr ass.

(and they call them "wimpy white boys" in the NICU because they just act

Oh man I am so tired of hearing that! The nurses haven't said it, but all of the doctors do. It really isn't the most sensitive thing to say to a mom about her sick child. Ugh.

[DebbieS]

((Hugs)) for you and Nate. I can't imagine only being able to spend an hour with your new bub each day. Hope Nate feeds well and gains weight soon, and that your Dr thinks a bit more before he speaks.

[aaronsmommy]

When we were in the NICU, it was the other moms that got to me with that. There was a little boy next to Aaron who had been there for months through many ups and downs after being born at 28 weeks, and I could only imagine how hard it was for her mom, then there was me with my big 6 pound baby who spent 4 days on a ventilator, and one the other side, there was a little girl was born at 28 weeks at a gas station and her mom kept saying things to the 2 of us like "my baby never needed oxygen, what about your baby" While the 2 of us were trying not to cry.

Having a baby in the NICU is just awful, but it will end!!

[Lori875]

I don't have any words of advice. I just wanted to say that your son is super cute and give you a big hug! I can't imagine how scary it would be to have a baby in the NICU. He sounds like a fighter and I hope he gets to go home soon! Good luck!

[Shyonelisa]

I am so sorry for you sweetie. I can honestly say that I would have preferred 3 more months of HG over the NICU stay dd2 endured. I still struggle with feelings of resentment for having to endure pure hell through the pregnancy, only to endure pure hell afterwards. I know exactly how you feel about family/friends right now. When dd2 was born blue and whisked away, my mom kept saying "she's fine" over and over again. I cried uncontrollably when I first saw her in the NICU all hooked up to tubes (they had to escort me out), and my mom kept saying that I should stop crying because dd was going to be ok. Well, I snapped at her and told her to shut up because dd wouldn't be in the NICU if she was ok. It pissed me off so badly when people told me things like that, and I'm sorry you have to endure something similar.

As for the doctor, does your chosen ped have rights at that hospital? When the NICU doctor pissed me off, I ended up having our ped come and visit the baby for a second opinion. I remember them telling me to use that stupid breast shield, and dd struggled, so when they walked away I used my actual breast and dd fed just fine. At least I lived 10 minutes away, so I literally visited every 4 hours for feedings, and I didn't care that the nurses tried to discourage me from spending all my time there (she was MY baby, after all).

I just wanted to share my experience and let you know that I understand your sorrow. I can assure you that the day he comes home will be one of your happiest (but boy will your nerves kick in ). I will be praying for you and that strong little guy, and I hope he is at home in your arms soon!

[mia1976]

Huge (((hugs))). I can't even imagine the nightmare you are living. To survive HG and then have to deal with your precious boy in the NICU all this time is just horrific. I'm so, so sorry. You have our support and we will listen to you anytime you need it. He WILL come home with you soon and your heart will heal. Glad you have some meds to help you through this time. Maybe counseling, too? Or a NICU support group, if your hospital has one.

[garnet]

Thank you all for the continued support. We still don't have Nate home.
They are suspecting hypoaldosteronism, which I had never heard of. The lab has been taking it's sweet time with the results of that test (should have been back Friday).

He's doing very well though. Two periods of hearing that we could lose him, but now his labs are stable, he is out of his isolette and in a crib, he takes half of his feeds by bottle, half feeding tube. No iv, no help breathing.

If we can get the diagnosis confirmed, we can start to look at a release date. If not they are sending him to another hospital the next state over because whatever he has is too big for them to figure out. -_- We pray that isn't the case.

Dh and I both have colds and haven't been able to see him in a week, which is beyond awful.

These have been some awful times. I want my son home. I want to feel like a mom. I want him to know he has a mom.

[Shyonelisa]

http://rarediseases.info.nih.gov/GARD/C ... onism.aspx

That was one of the descriptions that I found easier to read. Hopefully that will give you a better feel for what they're suspecting.

I hope that your LO does not have that condition, and can come home soon, and I wanted to add that you can PM me if you ever just need to talk/vent.

Lisa

[garnet]

Thank you for the link, it was a lot easier to read than what I've come across! I appreciate it! They are pretty sure it is what he has, and even the endocrinologist has said in our case, it would be "best" if it is, compared to the alternative of being sent away to find something even more difficult.

Thankfully he has passed all of his kidney tests, and blood sugar is not an issue... so they are saying depending on a positive result plus whatever his level of something is, he may outgrow it with time (or he could have it forever). I think from what they were saying its really bizarre he was born with it. Which of course makes me wonder if any of the HG drugs I took had some unknown effect. -_-

[DebbieS]

Sorry to hear about Nate and his condition. How awful to be sick & away from him too. Glad to hear he has improved. Hope he continues to improve, and that you get more information and support from the hospital & specialists.