@katrina2017 I have a seven week old HIE baby and I love to read this comment. Thank you.
They called us in for the conversation we very NICU parent dreads
- Thread starter szilvia
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@szilvia I'm so sorry, that's such a difficult thing to hear, but just remember she's your child, you know her better than anyone - you make the decisions, and you're allowed to tell any doctor you won't make any decisions without hearing the opinion from more than one doctor, you're also allowed to ask to not hear from that doctor anymore.
My son has a trach, he's 4 now... he was born at 25 weeks and spent 14 months in NICU/PICU before ever coming home, and we were told similar things probably somewhere around 10 weeks in because he has an extremely rare syndrome and they just weren't sure how things would turn out for him. So first of all - trach doesn't mean things can't work out. Our son is cute and fun, he's very delayed, but definitely communicates in his own way, walks, makes sounds, loves music and game shows, laughs all the time. Not saying any of that to get your hopes up, because obviously every situation is different, but just saying it's a guessing game. And I do really feel like holding our son every day was what turned things around. The nurses were nervous to get him out of the bed since he was intubated, but his doctor finally ordered it after like 6 weeks of touch-and-go, and he was like "listen, I don't know how things are going to turn out, but whether he makes it or not, you deserve to be able to cuddle with your son; it's not going to hurt him, and there's a very real possibility it could help." And we think it did... he clearly loved it.
My best advice to you is to see if your hospital has a palliative care team; in NICU, palliative care is more for the parents. At most hospitals, it's a team of doctors and nurse practitioners who practice from the viewpoint of ensuring the patient is comfortable, and helping parents make very difficult decisions like "is this very difficult treatment or procedure going to help in the long run, or is it just going to delay the inevitable?" They can also just be wonderful emotional support after a bad day has happened. My son had an incredibly difficult struggle for over a year, many, MANY of his 413 days there involved resuscitation, so it was nice to have these people saying "Yeah, he was resuscitated, but it doesn't mean he's actively dying, it just means he needs to get stronger to get past these episodes." Anyway, they can also help you wade through the varying information you receive from neonatologists.
Also... and this is a big one a lot of people don't realize, at most hospitals with a NICU (especially Children's Hospitals), you're allowed to ask for care team meetings. This usually involves going to a conference room with multiple doctors who have been caring for your child, any fellows/interns who have seen them, and the palliative team if you've been meeting with them. This is a really good way to get a quick consensus from multiple doctors at once about prognosis and a game plan going forward. You can ask for them for any reason... we didn't realize we could do that until it was getting close to time to transfer our son back to our hometown (he was 3 hours from home, so we just lived in Ronald McDonald House for 5 months), but it seems like this would be a good time to do it too, so you can get an honest feel for the situation, because sometimes it can be truly difficult to judge whether the doctors are hopeful or not.
And I want to reiterate that you know your child better than anyone; don't let any new doctor think they know better than you just because they went to med school. Yes, obviously you need them, but for instance... toward the end of our son's stay, they almost changed their minds about letting him come home because he was having episodes at night. His dad and I knew he was having episodes at night because we didn't stay with him at night, so no one was there to quickly calm him down if he'd get upset; he'd have tracheomalacia episodes when he got upset where his trachea would close and he'd brady/desat (the source of the previously mentioned resuscitation). I was like ummm hello have you not noticed that doesn't happen during the day when we're here?? He'd be safer at home, because he'd have someone with him 24/7 (private duty nursing... covered by medicaid). It took some convincing, but they realized I was right. The doctor warned me "Listen, it's not a matter of if but when he comes back to the hospital, because he will be back here in the PICU. I don't want to scare you, it's just the way these things go, he's a very sick kid." Well he's 4 and has never been back... and it's because I was right, that he needed to be home where he felt comfortable, had mom and dad with him most of the time, and always someone there to calm him down when he was at his most fragile. We saw him through some absolutely insane struggles in the NICU, but we also always knew that if he made it through all those traumatic episodes, he was going to be one hell of a hearty little fighter, and he has proved us absolutely right.
Anyway, sorry for the rambling... I travelled all day and am deliriously tired. lol. I saw you say you'll have a different doctor tomorrow; that's a relief. I would definitely take that type of advice with a grain of salt until you get to talk to another doctor.
If you have any questions about trach life, I'm happy to answer; I've been a trach mom since March 2020. Feel free to DM me. Sending you lots of love and hope for more favorable answers tomorrow.
My son has a trach, he's 4 now... he was born at 25 weeks and spent 14 months in NICU/PICU before ever coming home, and we were told similar things probably somewhere around 10 weeks in because he has an extremely rare syndrome and they just weren't sure how things would turn out for him. So first of all - trach doesn't mean things can't work out. Our son is cute and fun, he's very delayed, but definitely communicates in his own way, walks, makes sounds, loves music and game shows, laughs all the time. Not saying any of that to get your hopes up, because obviously every situation is different, but just saying it's a guessing game. And I do really feel like holding our son every day was what turned things around. The nurses were nervous to get him out of the bed since he was intubated, but his doctor finally ordered it after like 6 weeks of touch-and-go, and he was like "listen, I don't know how things are going to turn out, but whether he makes it or not, you deserve to be able to cuddle with your son; it's not going to hurt him, and there's a very real possibility it could help." And we think it did... he clearly loved it.
My best advice to you is to see if your hospital has a palliative care team; in NICU, palliative care is more for the parents. At most hospitals, it's a team of doctors and nurse practitioners who practice from the viewpoint of ensuring the patient is comfortable, and helping parents make very difficult decisions like "is this very difficult treatment or procedure going to help in the long run, or is it just going to delay the inevitable?" They can also just be wonderful emotional support after a bad day has happened. My son had an incredibly difficult struggle for over a year, many, MANY of his 413 days there involved resuscitation, so it was nice to have these people saying "Yeah, he was resuscitated, but it doesn't mean he's actively dying, it just means he needs to get stronger to get past these episodes." Anyway, they can also help you wade through the varying information you receive from neonatologists.
Also... and this is a big one a lot of people don't realize, at most hospitals with a NICU (especially Children's Hospitals), you're allowed to ask for care team meetings. This usually involves going to a conference room with multiple doctors who have been caring for your child, any fellows/interns who have seen them, and the palliative team if you've been meeting with them. This is a really good way to get a quick consensus from multiple doctors at once about prognosis and a game plan going forward. You can ask for them for any reason... we didn't realize we could do that until it was getting close to time to transfer our son back to our hometown (he was 3 hours from home, so we just lived in Ronald McDonald House for 5 months), but it seems like this would be a good time to do it too, so you can get an honest feel for the situation, because sometimes it can be truly difficult to judge whether the doctors are hopeful or not.
And I want to reiterate that you know your child better than anyone; don't let any new doctor think they know better than you just because they went to med school. Yes, obviously you need them, but for instance... toward the end of our son's stay, they almost changed their minds about letting him come home because he was having episodes at night. His dad and I knew he was having episodes at night because we didn't stay with him at night, so no one was there to quickly calm him down if he'd get upset; he'd have tracheomalacia episodes when he got upset where his trachea would close and he'd brady/desat (the source of the previously mentioned resuscitation). I was like ummm hello have you not noticed that doesn't happen during the day when we're here?? He'd be safer at home, because he'd have someone with him 24/7 (private duty nursing... covered by medicaid). It took some convincing, but they realized I was right. The doctor warned me "Listen, it's not a matter of if but when he comes back to the hospital, because he will be back here in the PICU. I don't want to scare you, it's just the way these things go, he's a very sick kid." Well he's 4 and has never been back... and it's because I was right, that he needed to be home where he felt comfortable, had mom and dad with him most of the time, and always someone there to calm him down when he was at his most fragile. We saw him through some absolutely insane struggles in the NICU, but we also always knew that if he made it through all those traumatic episodes, he was going to be one hell of a hearty little fighter, and he has proved us absolutely right.
Anyway, sorry for the rambling... I travelled all day and am deliriously tired. lol. I saw you say you'll have a different doctor tomorrow; that's a relief. I would definitely take that type of advice with a grain of salt until you get to talk to another doctor.
If you have any questions about trach life, I'm happy to answer; I've been a trach mom since March 2020. Feel free to DM me. Sending you lots of love and hope for more favorable answers tomorrow.
@chisza777 This is so helpful. Thank you so much for sharing. I think my girl does better when we hold her too. She’s been on an EEG for a week and they won’t let me hold her, so that’s also been really tough and I think is contributing to our overall mood.
@szilvia I can absolutely relate to that.
Take care of yourselves and each other as much as possible. This experience can be extremely hard on a marriage. We went though some extremely rough patches during this journey, but we worked really hard to get through it and love each other now more than ever... but our relationship was definitely on the rocks there for a while.
Take care of yourselves and each other as much as possible. This experience can be extremely hard on a marriage. We went though some extremely rough patches during this journey, but we worked really hard to get through it and love each other now more than ever... but our relationship was definitely on the rocks there for a while.
mikalister
New member
@szilvia I’m so sorry you’re going through this—as everyone has said, you’re doing an incredible job advocating for your child. It is so hard to balance the expertise of doctors and your very valid expertise as the parent (you are likely one of the few constants in the nicu in terms of seeing your child’s entire journey and logging the most amount of time with them each day). But trust yourself.
My situation isn’t the same, but my son had brain bleeds and developed hydrocephalus. Before he had his shunt surgery, he had his first mri. The next day, the neonatologist and neurologist pulled me into a family meeting to tell me the results—talk of brain damage, no motor skills, etc. Also a new clot that could cause a stroke at any time. I was devastated. Fast forward two days later, and I met with my sons neurosurgeon. He had a very different, more positive read of his mri. I am choosing to believe him. Will he be wrong? Maybe. But I’m sharing because I very much agree with others here in saying ask for multiple opinions. Ask for the specialists opinions, not just the neonatologist, if relevant.
Sending you strength and hope—whatever happens, this community is here for you.
My situation isn’t the same, but my son had brain bleeds and developed hydrocephalus. Before he had his shunt surgery, he had his first mri. The next day, the neonatologist and neurologist pulled me into a family meeting to tell me the results—talk of brain damage, no motor skills, etc. Also a new clot that could cause a stroke at any time. I was devastated. Fast forward two days later, and I met with my sons neurosurgeon. He had a very different, more positive read of his mri. I am choosing to believe him. Will he be wrong? Maybe. But I’m sharing because I very much agree with others here in saying ask for multiple opinions. Ask for the specialists opinions, not just the neonatologist, if relevant.
Sending you strength and hope—whatever happens, this community is here for you.
stevechase
New member
jaslovesjesus
New member
@szilvia Sometimes you just need the right doctor in your corner. Our daughter was born at 28+6 and kept having bloody stools and intense pain with eating. The GI team had no idea what was going on. We had several meetings, scans, and even a colonoscopy to see what it was. I put on my librarian/researcher hat and realized all of the formulas had soy oil—except for one. I asked a pulmonologist to let us try that formula and BAM the issue resolved. No more pain. No more blood.
He wasn’t the GI specialist, but he listened to my research. Medical professionals can and do listen to reasonable information… sometimes. Put your best foot forward, give your information, and plead your case. (I’m pretty certain yelling doesn’t help because I was the point person on that conversation, unlike all the others that my husband lead…)
He wasn’t the GI specialist, but he listened to my research. Medical professionals can and do listen to reasonable information… sometimes. Put your best foot forward, give your information, and plead your case. (I’m pretty certain yelling doesn’t help because I was the point person on that conversation, unlike all the others that my husband lead…)
kevintri99
New member
@szilvia I am all for palliative care. That being said the way you are describing this to us gives me pause and I’d wait before yo made any decisions. Your doctor frankly sounds like an ass. You know your kid best and the way you described her and said she already interacts with you makes me think this doctor is wrong. We had a similar situation.
andershusmann
New member
@szilvia I’m sorry this is happening to y’all 
no advice here, but my husband was born at 22 weeks gestational, and his parents, my in laws, got called to the hospital 6 times to be told “he might not make it” or “maybe say ur goodbyes” and he manage to hold on and now we have our own nicu baby, i will be hoping for the best for you guys!!
no advice here, but my husband was born at 22 weeks gestational, and his parents, my in laws, got called to the hospital 6 times to be told “he might not make it” or “maybe say ur goodbyes” and he manage to hold on and now we have our own nicu baby, i will be hoping for the best for you guys!!katrina2017
New member
@szilvia Do not. DO NOT stop fighting, dearest fellow parent. You have every right to demand clear answers from the medical team of your child. You have every right to demand another doctors opinion/perspective & care. 
From everyone here I can say for certainty it’s gets worse before it gets better in most situations. You know your child and I beg you to not just be persistent. You owe it to yourself and your child to push hard to be heard and listened to.
I wish you all the best going forward. Being behind a keyboard is limiting, but know that I’ll pray for you and would hug you if I could.
From everyone here I can say for certainty it’s gets worse before it gets better in most situations. You know your child and I beg you to not just be persistent. You owe it to yourself and your child to push hard to be heard and listened to. I wish you all the best going forward. Being behind a keyboard is limiting, but know that I’ll pray for you and would hug you if I could.
@szilvia Having 3 NICU babies (twins for a twofer), but nothing as serious as you are experiencing, I can say this…NICU babies are fighters. They’ve fought since birth and they fight everyday. Mine are 6 and 4.5 now and they are some of the brightest and most social kids we know. Don’t ever give up hope! Show them love and be their voice. You got this!
@szilvia I hope when you start tomorrow with a different doctor that you feel like a different person and get some positive feedback. I don't want to let my mind go to how devastating that conversation must have felt for you, but you sound like a very resilient person from how you wrote this post and you are doing all the right things to not blindly trust what this doctor is telling you.
I would absolutely not stop fighting for your daughter, not without lots of additional opinions to confirm that (and even for anyone who has had to let a child go, that's not "stopping the fight"; that's still championing the life of your child in making decisions in their best interest). I don't understand how things could be looking so brightly toward extubation a week ago and then go down to such a poor outlook over the course of one week without some major developments. Obviously, things get postponed all the time in the NICU out of precaution, but this doctor makes it sound like that was never going to be a possibility.
Have they done any brain monitoring of her recently? I would absolutely ask to have consults with the neuro team. What do the different specialists say who come through each week (PT/OT)? I find it shocking that this would be the first sort of conversation about it, if true. Definitely ask to speak with a social worker or patient care coordinator for the NICU to ask about what you can do in this situation--how you can get more answers out of these people to understand your child's health better. I'm so sorry you are going through this and I hope you get some answers soon.
I would absolutely not stop fighting for your daughter, not without lots of additional opinions to confirm that (and even for anyone who has had to let a child go, that's not "stopping the fight"; that's still championing the life of your child in making decisions in their best interest). I don't understand how things could be looking so brightly toward extubation a week ago and then go down to such a poor outlook over the course of one week without some major developments. Obviously, things get postponed all the time in the NICU out of precaution, but this doctor makes it sound like that was never going to be a possibility.
Have they done any brain monitoring of her recently? I would absolutely ask to have consults with the neuro team. What do the different specialists say who come through each week (PT/OT)? I find it shocking that this would be the first sort of conversation about it, if true. Definitely ask to speak with a social worker or patient care coordinator for the NICU to ask about what you can do in this situation--how you can get more answers out of these people to understand your child's health better. I'm so sorry you are going through this and I hope you get some answers soon.
kristinalocklear
New member
@szilvia Oh boy, I was in your exact same shoes 1.5 months ago, when we got the devastating news that my baby girl was going to need a trach in order for her to breathe and finally go home. We did everything in our power to avoid the trach. We sat down and held a care conference with everyone who was on her team there. We even started the process of getting a second opinion at a highly ranked hospital in CA. However, as a first time mama and seeing my baby struggle everyday to breathe, we decided it was the best interest for her. That being said, the likelihood of the other second opinion hospital doing something different was slim. They spoke about her case and they said, “there’s nothing different we would do as well.” So my baby has a trach now, and are learning about all the trach education that it takes caring for her so she can come home. Baby girl now sleeps and breathes comfortably.
hunterlovesjesus99
New member
@szilvia This doctor sounds very similar to a Dr V I had issues with a few weeks ago when we transferred hospitals. I’m not sure if it is, but if it’s the same hospital- I fired the hell out of that man and told them not to allow him back in my daughter’s room. As long as there’s two neonatologists on the floor you’re allowed to fire them!
@hunterlovesjesus99 I did some snooping and we’re not at the same hospital (ours is a level 3 NICU) but we are in the same bump group! We must have had the first two December due date babies.
I think I will ask the social worker for my baby to not have him as her doctor again. One benefit of having been in the NICU 10 weeks is they know us and like us and know we’re not just making a fuss for no reason.
I think I will ask the social worker for my baby to not have him as her doctor again. One benefit of having been in the NICU 10 weeks is they know us and like us and know we’re not just making a fuss for no reason.
hunterlovesjesus99
New member
karenweber8
New member
@szilvia Hi I’m sorry you’re being gaslit and getting calls saying you’re asking “too many questions”. Get this doctor out of your baby’s care is my opinion. I have a 23+4 weeker and she’s thriving because we ask so many questions and have memorized her diagnosis, chart, labs, and are on top of her cares as well as the nurses. Keep doing what you’re doing. You’re fighting for her and giving her the best that you can do, which is demand more to keep her alive and find the right balance to treat her. Don’t give up. She will thank you forever. Trust me. I see my 23 weeker and I’m amazed at where she is right now. You would have never thought she was a micropreemie with a brain injury.
Dm me if you have any questions or need moral support. NICU family strong here only.
Dm me if you have any questions or need moral support. NICU family strong here only.
disciplefire7
New member
@szilvia Sorry you’re going through this. Our ex 24 weeker also had rotating care teams during our 150 days of stay at NICU. Each doctor had his or her own styles, some preferred conservative treatments with others were a little more aggressive. But one thing they all did was giving us clear explanation of every treatment they ordered and every assessment they made. In your case, it’s certainly odd a doctor would make such assessments. One thing I felt really helpful to us was to attend the morning and evening rounds, during which the whole team meet and discuss every aspect of the care. I would encourage you to go to those meetings as much as possible and demand answers on anything that you feel you’re not given a clear explanation to. Prayers for your LO to beat all the odds!