SO FRUSTRATED Please Help Beccah

47 Replies
Beccah - November 7

OMG, I am so tired of not being with my son! For those that don't know, I had my baby at 28 weeks, he weighed 3.5 lbs. He has been in the NICU for 7 weeks now and his hospital is an hour away. It's so expensive now to go and see him whenever I want, and when I do go, I have to leave after a few hours (nurses ask me to leave numerous times b/c of "privacy issues" when doctors make their rounds, etc). Anyway, now Bradyn weighs 6 lbs (term babies weigh less than this), taking a bottle for 2 weeks now and he's having "Brady's" everyday. When he has a brady, he "forgets" to breathe and needs to be woken up or even given O2 to stimulate him. I CAN DO THIS AT HOME! I don't understand why I can't take my baby home! My MIL had a preemie and they sent her home with a heart monitor and oxygen and when she brady'd she'd just thump her feet or give her oxygen if that didn't work. I know so many other mothers who have taken their babies home when they were still having bradys. I feel so disconnected from him, like I don't even have a son and that SUCKS! I want my child, DAMMIT! BTW, when I say "They" I mean the nurses. His doctor(s) have NEVER said a word to me, no phone call, no nothing. The nurses tell me that he has to go 7 days without a brady for me to take him home, but GOD, he's MY CHILD. I am about to yank him out myself. I can take care of him much more than they can, esp if they give me equipment (heart monitor and/or O2). I can give him love and attention whereas the nurses hold him just to feed him and then put him back again. Here’s my plan, I’m going to give him til Friday to get situated, then I’m going to march up there with my husband (who totally agrees that we need him home) and demand that we take him home. Hopefully when they realize that we’re serious about taking him home, they’ll send him home with a monitor (they have done this before, so I know they can). Then we’re going to take him home the next Wednesday, after I take an infant CPR class. What do you think? I’m really not being crazy!

 

Narcissus - November 7

Beccah, first, let me tell you how sorry I am that you have gone through this. I have no advice bc I have no idea what this must be like. My first reaction was, if it were me, he would stay bc I would not want to be in charge of monitoring his breathing. It sounds quite scary. Still, I understand your need to have your son home. This must be exhausting. My question is: Can you have a nurse make home visits if you should take him home AMA? Also, what are the repercussions, should something happen to your baby if you take him home AMA?

 

Lisa*9 - November 7

I think taking the infant CPR course is a very excellent idea,prove to them you pa__sed the course. Is there an organization you can talk to someone for support so youy can get you nedds mets for your son to come home. Sounds like a good plan to me let us know how thing go. I do think about you and the situation from time to time.

 

Beccah - November 7

My first reaction was also to let him stay til he's ready to come home. Then 4 weeks turned into 6 and I realized that I CAN have him home b/c mothers do it all the time. I'm not really monitoring his breathing... If he's hooked up on a monitor, it will go off if his breathing slows down or stops. I just have to be within earshot (trust me he won't be leaving the house and I will be next to him 24/7) and ALL I HAVE TO DO is wake him up, by rubbing his back or tapping his feet... just like if he's at the hospital. I talked to my MIL this weekend and she says "You're 22 years old, no job, YOU CAN HANDLE THIS!". As far as the nurses home visits, I plan on getting a few nurses at my church to give me their phone numbers just in case I need them. I have a hospital 2 min from my house in case something happens.

 

chelsey - November 7

Oh Beccah, I'm sorry to hear that Bradyn is still in the hospital, but he sure is growing!!!! I know you're anxious to take him home, but he is having an awful lot of Bradys. I know at home he'll get the love and nurturing that he needs, but I really think that he needs to stay in the hospital until the doctors say it is okay to take him home. Has Bradyn had his carseat test yet? Also, knowing you live an hour away from the hospital, if you needed to take him back, could you get him there quick enough? I understand that nurses and doctors can seem insensitive to parents and they dont give a baby as much snuggle time etc., but please consider what is best for Bradyn. Do you think it is his best interest to be at home? Or do you think he should stay in the hospital, you're personal feelings set aside? With him being at home, you might find yourself constantly worrying and stressing. Is there anyplace by the hospital, like Ronald McDonald House, or YMCA or anything, that can allow you to stay to be nearer to your baby? Please think about this real hard, and talk to your baby's doctor before taking him out of the hospital. Curious, can they refuse to allow you to take your baby home? I know its your baby, but can they forbide it?

 

Narcissus - November 7

Insurance will probably pay for a nurse to visit, one who has his medical charts. What will you do when you need to shower and cannot hear the monitor? Will you shower while DH is at home, early in the morning or later when he gets home? Good luck. I am sure you can handle the monitor but still, find out what the legal repercussions are... He will be home, and in your arms sooner than later:) This must be so trying, travelling back and forth and practically living at the hospital. You are not crazy, not by any means!! I would go nuts dealing with the nurses.

 

Racahel mommy2lucas - November 7

I was blessed not to be in your situation, but I have a friend whos daughter had a baby at 29 weeks, he weighed 3lbs 2oz. He was able to be sent home with a monitor and oxygen after 5 weeks. And my friend's daughter was 15 yrs old. The hospital had her stay there 2 nights before sending him home to make sure she knew how to use the equipment. A nurse visited on a regular schedule. She also got cpr certified along with my friend, her mother. Now the baby is over a year old and thriving. I at first would want to be safe and keep him in the hospital, but I agree with your wanting to bond and and take care of him. If you are ready for the responsibility, it would probably be in babys's best interest to have him home with his parents where he can get the attention24-7. He may be able to come off the monitor quicker. Good luck whichever way you go!!

 

chelsey - November 7

sorry, I was busy replying when you mentioned that there was a hospital 2 minutes away from your home! Do they have the equipment and staff to care for your baby, just incase? It sounds pretty simple, just having to rub his back or tickle his feet to stimulate him. Just beware that sometime, he may not respond as quickly or easily. I'm sure you can handle having Bradyn at home, but you need to be sure that is 100% in his best interests. When do the doctors think he will grow out of his bradys? Or do they have a supposed time line when they think he will be able to go home?

 

Beccah - November 7

Chelsey, He isn't having "so many bradys" anymore. He's still having 1-3/day, much less than the 13 he was having last time I talked to you. He also isn't going to take the car seat test like you said. Actually, they never heard of it... so I'm not sure what to think about that one. Anyway I asked about staying at a McDade house but from the sounds of it, the rooms are filthy.. besides my husband works 40 hours/week and after his deployment to Iraq, I can't stand to sleep away from him, you know what I mean? I need his support more than anything right now anyway. I absolutely believe that I have his best interests in mind. I honestly believe that the best thing is for him to be with me. I think he will grow and get better with his mother. Studies have shown that preemies or sick babies seem to get better quicker with skin to skin contact and just being loved on, and he's not getting that where he's at. The Drs say that preemies just "grow out of them" and it starts to slow at about 34 weeks. It will be almost 37 weeks when I plan on taking him home. As far as "not responding quickly or easily" that's when you give them oxygen.

 

Beccah - November 7

Racahel, THAT'S WHAT I'M TALKING ABOUT! I hear those stories all the time! I would be more than willing to stay in the hospital to feed him round the clock and make sure I can use the equipment but "we used to do that, but not anymore" (nurses). Well, WHY THE HELL NOT? If a 15 year old can do it, why can't I? Thanks for everyone's input so far, I really appreciate support/concerns. I know that you guys are looking at my situation in an unbiased view, and looking out for my child, and you have no idea how good that makes me feel! :_-)

 

chelsey - November 7

Thats weird about the car seat test, they weren't going to allow Gabriel to come home without one! He had to go 90 minutes in a car seat, untouched without a brady. I even had to buy a different car seat, that suited the doctors and nurses! Does Bradyns bpm drop drastically when he has a brady? And can he recover on his own? If they give you all the equipment and stuff you need to monitor him, then go for it, and take him home! I totally agree with the skin to skin contact, and I've always been a firm believer in a Mothers love, being the best medicine!! Absolutely, also do what you think is best for your baby... but WILL they let you take him? They cant stop you can they?

 

Narcissus - November 7

I also agree about your baby needing to bond with his mother. I bet it will make all the difference.

 

Beccah - November 7

His BPM went as low as 53 a couple times but that's because the nurses wait to see if he comes up on his own. If it gets that low, they stimulate him, and he comes right back up. As far as the car seat test, I even asked if there was a specific car seat I needed and they were like, "No, just a regular one". I'm really starting to doubt these people. My labor was run by idiots (remember my labor story?), and it seems like my son is being taken care of the same idiots. My MIL beat into my brain this weekend that this is MY child, and If I don't want him there anymore, that's MY RIGHT. I could have claimed religious reasons and not had him in the NICU at all. Of course he would have died, but they couldn't have stoped me from keeping my son off life support, you know? As long as I have the support I need I can really go through with this. I think it will be hard to "demand" that my son be released, but once he gets home I'm sure that it will be easier (the baby monitor goes in the shower with me in case dh isn't home, btw). I'm got going to be stupid with this at all. I'm getting a doctor in town that has extra training with preemies and I'm making sure I have phone numbers of all the nurses/docs I can. I am also going to look into getting a nurse to visit the house.

 

chelsey - November 7

You sound like you've really thought this through! I think you are properly prepared, and know the risks. Tell them to get him ready, cuz' baby is coming home! Good luck Beccah! Yes, I remember you mentioning those idiots in the hospital! I dont blame you one bit for wanting to get him out of there! When Gabe was in the hospital, they put a feeding tube down his throat, b/c they were too lazy to wake him and try to feed him. I was p__sed! I told them to take it out, and I fed him myself! I'm thinking if you take him home, a Health nurse will visit you anyways, and she will likely have more than one visit, also she'll have numerous numbers and references for you, incase you'll need them.

 

Julie - November 7

sorry to hear about your troubles. My sister had twins at 25 weeks during her pregnancy. One of the babies did not survive and the other with in the NIC unit for about 3.5 months. I know how frustrating this can be. She also had a 3 year old to take care of and had to drive an hour to get to the hospital to see her 1 lb. baby. Well he is now 1 year old with no health problems. I know you want him with you but he probably needs to be there otherwise they would send him home. I would rather be safe than sorry. I know how hard it can be my sister went crazy. She dealt with the loss of one baby and couldn't be with the other one. Hang in there I am sure he will be home soon!

 

Beccah - November 7

Hi, Julie. Do you know why the baby had to stay that long? Heart problems? Lung problems? Problems in general? I'm so sorry to hear about your sister and nephew. I look around at the NICU unit and I see small sick babies everywhere. I ask and ask the nurses every time I go to see my son and they all say that Bradyn is completely healthy, and all we're waiting on is the bradys to stop. I'm sorry, but 7 weeks is long enough. I feel like I have missed out on so much already. What's really frustrating is that in the past they HAVE sent babies home with monitors just like Bradyn, but they "don't do that anymore". I'm sure you know why, but I think that they need to decide that stuff on an individual basis, not general. Other hospitals would have sent him home already, and thats the most frustrating part. Don't worry, I'm going to MAKE SURE this is the best thing to do for him, and we're fully prepared for anything that may come our way. If his doctor gives me even one good reason why he can't come home, one that maybe I haven't thought about already, then we will probably leave him there. It's not like I'm going to pick him up and haul a__s out the door, tripping over leads and IVs (lol). But seriously, I'm being smart about this, and he won't go anywhere if I am given a good enough reason by his doctor.

 

Lisa*9 - November 7

Have you heard of the ANGEL CARE MONITOR for baby's with breathing problems. It is suppose to pick up a baby not breathing at home. Something to think about too.

 

ADD A COMMENT:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
Start A New Discussion