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EmilyC
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| Posted: April 23 2009 at 6:51am | IP Logged
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As you know, my dd is still in the NICU in Boston. She was sent there to have some tests done, which are completed now. At this time she is no longer sick, but is still not feeding very well. She takes anywhere from a few cc's to an ounce at her feedings. The feeding specialist did an evaluation and said that they believe she has the capacity to learn to eat, she just needs more time. They are talking about sending her to the NICU that is local to us for a few more weeks in order to learn to eat.
I want to bring her home on the feeding tube and help her learn to eat at home. The way I see it, she's not sick, so she doesn't need to be in the hospital anymore. It's been almost a month now, and I think she just needs to be at home.
I spoke to a nurse practitioner over the weekend, and she said that there shouldn't be a problem with taking her home on the feeding tube--that they'd set us up with the equipment she'd need and teach us how to use everything. I spoke to a dr on Tuesday, and she told me that no, they don't send babies home on the feeding tube, because she feels that it isn't safe and only a nurse should handle the tube.
I thought that was ridiculous. I was told by yet another dr. at the other NICU that putting in the feeding tube was so easy, that he could teach anyone to do it in just 5 min. I've done lots of research on the internet about it, and I've even found a few youtube videos of other moms putting the tube in their babies in order to help other moms see how it's done.
So, this dr. was supposed to call me yesterday and tell me what their plan is. She said she'd call after 11am. Well, by 2pm, I was getting annoyed, so I called and they said they were waiting for the feeding specialist to do the evaluation at 3pm. Ok...so then 6pm comes and I'm getting upset. So I call again, and she tells me that the dr. has left for the day, but I could speak to a nurse practitioner.  I asked the np about bringing dd home to help her learn to eat, and she says that while that's a great and reasonable question, she can't answer it, so I can call back tomorrow after 11am and speak to a dr.
So, MIL thinks I should call at 11 and give them an hour. If no one has called me back by noon, I should go down to Boston and not leave til I speak to someone. This is the second time a dr. has totally blown me off over there and I'm getting very upset about it.
I think I should be able to bring home my child--she is MY child, not the NICU's. Am I being unreasonable here? If you were in my situation, would you start demanding to bring home your baby? Or would you let the hospital continue to work with her there? How would you handle this situation?
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Emily,
Wife to Rob since 8/98
Mom to 4:
Sarah (13) Robbie & Riley (10) Regina (nearly 3)
My secular lit-based curriculum:
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guitarnan
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| Posted: April 23 2009 at 7:06am | IP Logged
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I think you deserve respect from your doctor - if you are promised a phone call and decision on a particular day you should get it.
Given the fact that you are getting conflicting answers from medical professionals working at the same hospital, and given that the doctor ignored you yesterday, I'm inclined to agree with your MIL.
And...yes, she is YOUR baby. Were I you, I would feel the same way. I can easily envision myself staging a sit-in at the hospital in order to get answers and to be able to bring my baby home.
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stellamaris
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| Posted: April 23 2009 at 7:29am | IP Logged
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Although I would not recommend it, you can always check her out against medical advice. The hospital is not a prison. However, I would first request another opinion. You do not need to speak to your current doctor about this, you can simply contact the doctor that you would like to get the second opinion from and tell him/her that you want a second opinion. Do you have your own pediatrician? You might start there. Going to the hospital and not leaving until you get an answer might work, too, but what if the answer you get is to leave her in the hospital? Can you find a physician who will work with you to get her home? What about the other dr. in the NICU who said it was easy to put in the feeding tube? Having a doctor's support for bringing her home will protect you as well from any "child abuse" legal problems.
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Caroline
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SusanMc
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| Posted: April 23 2009 at 8:49am | IP Logged
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If her doctor at the hospital is concerned about the feeding tube, I would calmly gather up resources to counteract them. Call your pediatrician's office and see if they can help. See if you can get a friend or family memeber who is a nurse or doctor help you at home. As the NP to show you how it is done in the hospital and perform them yourself if allowed. Basically your doctor is putting the concerns over feeding the child with a tube vs. your concerns about bonding with your child and the hope that you will be better able to feed the baby when that occurs. You may get further by showing that you are ready and capable rather than angry. NICU folks seem to click over into detached clinician when faced with an emotional parent.
FWIW, when our baby was in the NICU it seemed like FOREVER to bring him home even after his condition improved. Finally during rounds the NP and Neonatologist got all the information from the specialists and concluded that further observation would only serve to "hinder the bonding process." They actually put a premium on bonding for our son's health. You may find someone who can help you advocate for your baby's return home on these medical grounds as well.
Hope this helps!
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4 lads mom
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| Posted: April 23 2009 at 5:15pm | IP Logged
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Emily, I have been down this road a few times....one thing that might help is get the social worker for NICU or the "patient advocate" involved. I am not sure if you have talked with the social worker....in one NICU our social worker was a jewel of a woman, she helped navigate these exact same issues, ie- docs not being clear, running interference for me when I was really unhappy with one doc...in another NICU, (in our present state), the social worker was most concerned about feeling out forms and was pretty non-existent at the bedside. I just throw that out there, if you have a good relationship with a NICU social worker, they are invaluable for helping to advocate for your precious daughter. I know for a fact that NICU's send babies home with feeding tubes....but it is individualized, and it doesn't sound like you are getting a straight answer either way. Bigger cities have feeding clinics outpatient that you might be able to get Regina into right away....developemental pediatrics are invaluable in helping set this up...have you seen one at the bedside yet??? You should look into seeing one....
Sorry, I gotta run, but please PM me if you have any questions....I know how hard this is...I've had two go home with g-tubes...it's tough.
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stellamaris
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| Posted: April 23 2009 at 5:22pm | IP Logged
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Emily, I just wanted you to know I am praying for you tonight. Please try to post when you can and let us know how it is going for you and whether you have been able to bring Regina home. I am sure many of the ladies of the forum are holding you and baby Regina in their prayers.
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Caroline
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wahoo92
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| Posted: April 23 2009 at 6:29pm | IP Logged
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Some of this seems a little disjointed (I'm sure that it does to you, too). I'm speaking from the perspective of a Peds RN, and while I never worked in the NICU (I was on the infant/toddler floor), I know a bit about how the system works. NICU's typically have a very comprehensive plan regarding what an infant needs to go home, what knowledge the parent needs to have, community resources that need to be contacted or put into place, adaptations that may be needed in the home, and what competencies that you need to demonstrate to the staff and get "checked off" prior to leaving the hospital. Depending on the complexity of the child (I don't know your infant's medical needs), they may even have the baby and you stay in a special sleep-in room a night before discharge to assure that you are comfortable in the baby's care. These are usually things discussed over days and aren't usually decisions made overnight, so if this isn't what the "team" has been working towards, they may have to shift their gears and adapt to the new plan of her going home rather than another NICU.
The people that "should" be most helpful with focusing on her d/c are her primary nurse/nurses, the social worker, and possibly the NP (those weren't yet being much in our hosp. before I left and they often carry different roles in different hosp). The conflicting stories of the possibility of going home with an NG tube are a bit odd to me in that a feeding tube by itself is not an uncommon piece of medical equipment to go home with, especially for a NICU baby with growing needs or other medical issues and not one that is terribly difficult to understand or use. Certainly, you want to feel comfortable with it and use it properly and take it very seriously to prevent any unintended consequences, but it is definitely quite doable.
Two things, if you're momma's intuition is telling you something isn't quite right with how you are being given information or what info. you are getting, absolutely request a patient representative or speak to the nurse manager or charge nurse to find out the appropriate person for you to be channeling through. Physicians can be hard because they often rotate so quickly on and off service, and when emergencies come up as they do very quickly in an ICU, other things can get pushed back (not MD bashing, just stating reality). Often their RN's or NP's will do alot of their phone communication for them. The more people involved, the more opportunity for the information to get confused or mispoken.
The other suggestion is that I think it would be very helpful if you could be there. I don't know what your circumstances are but, especially if you feel the baby could come home and could be managed at home, I would try my best to get there. If there is any question about her ability to thrive or be safe at home, you could possibly address those concerns and put them to ease by taking on a bigger portion of her care at bedside. Not to say that you can't achieve the same things over the phone, but it will likely be harder as you are discovering.
I do hope it works out for the best for all of you.
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EmilyC
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| Posted: April 24 2009 at 7:52am | IP Logged
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Thanks everyone. Dh and I went down there yesterday and visited with Regina for the afternoon/evening, and spoke with the dr. She was adamant that they would not discharge her with the feeding tube because they consider it too dangerous. They are planning on sending her back to the NICU that is close to us, hopefully today. We're waiting to hear if they had a bed for her. When she's nearby, I plan to be there daily--possibly rooming in with her for some of the time she's there.
The good news is that she's now taking 1-1.5 oz by mouth at most of her feedings. She gets about 2oz every 3 hours, so that's about half the bottle! I'm hoping that it's going to be a matter of days rather than weeks before she's eating enough to be sent home.
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Emily,
Wife to Rob since 8/98
Mom to 4:
Sarah (13) Robbie & Riley (10) Regina (nearly 3)
My secular lit-based curriculum:
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MarilynW
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| Posted: April 24 2009 at 8:15am | IP Logged
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Continuing to pray for you and Regina. NICU doctors are not known for their sensitivity (unlike the nurses)My personal view is that the feeding tube (assuming nose one) is quite tough to do and if she can come of it in a couple of days it would be better. But pm 4ladsmom - she is an amazing lady who does amazing things -and she can give you lots of advice.
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4Real Forums : Mothering and Family Life
Topic: What would you do in this situation??
