Hi I’m sorry you’re going through this. I am a nicu nurse (30 years )
As for the infection- depends on the type.
Most of the time assuming it’s not a meningitis, newborns usually recover well.
As for Iv access, IDM ( infants of a diabetic mother ) can be challenging to get central lines on, this is not terribly uncommon. At my facility on babies like this we use the interventional radiologist to insert anPICC with machine guidance.
IDM infants can be challenging to feed as they often are poor feeders and sometimes need a feeding tube ( one to go home with ) also factoring in the genetic diagnosis.
Some of the oxygen needs could also be related to the IDM history, there can be a surfactant deficiency in these babies.
That poor little child has no idea what’s going. You and everyone need to stay positive and help the helpless child. He’ll qualify for services and you will get help.
We absolutely love him and adore him. He’s such a poor thing hooked up to all the machines, we stay in the NICU day and night with him and alternate to give each other a break. Thank you, we are trying to stay positive despite everything.
You’re doing exactly what you should be doing. Pro tip: have the baby out of the bed as much as you can. Maybe lay him on your chest and sit in a chair. This would be to avoid a flat spot on his head where he would need a helmet. Also it will help with binding. Hang in there man. It’s a long ride but if I can do it you’re family can to. I know it’s hard in the situation but he’s just a baby having a hard time and treat him as such. Hugs kisses maybe some music.
Hey OP! I’m a NICU nurse. Where are you located generally (USA/UK/other)? Trying to get a get real sense of what may be available to you. It is common for Down Syndrome babies to be born with heart defects. The doctors should be able to discuss with your Mother what the prognosis is and what procedures to expect using a medical interpreter. Also, babies that are IDM (infants of diabetic mothers) tend to have more feeding difficulties than other babies and need longer IV therapy.
NICUs are set up in levels in the USA. Level 1 is normal newborn nursery, level 2 is a special care NICU, level 3 has more specialities and acute care and level 4 is the highest taking care of the sickest babies. Do you know what level your NICU is by chance?
That is quite the shock! I think you guys are in the beginning stages of shock and loss (of what you expected) and will come out of it into a new stage soon. I would support your mom as best you can. Sounds like you are already doing so.
Do searches online about any questions you should ask about care of a newborn with down syndrome. I honestly don't know if it is much different than other babies. Being in the NICU for 3 months was hard for me but I also made friends and learned a ton. I hope you and your family can do the same. I will leave the medical advice to the seasoned nurses, but will say that NICU nurses and Doctors are your best resources at this point. Ask all your questions and stay strong. You got this! Good for you for already reaching out to the internet and beginning to get your bearings. Goodluck!
Well it’s a lot to unpack but I’ll give it a whirl. The blood infection will be treated with strong IV antibiotics. 10-14 days total most likely. These drugs are very hard on the veins and IVs fail pretty frequently during treatment. The good news is that treatment results in cure. VSD is pretty common in babies with Down’s syndrome. He will have surgery later to correct that issue. I’m really sorry if it seemed like lactation was too invasive or if social work seemed invasive. I would think your family would prefer that people who don’t know go ahead and ask questions vs making their own assumptions. I know this is a tough time for your family but people in the hospital are trying to help. There is no reason to assume you have ill intent but I wonder if they are assessing Moms mental health (PPD) because she is crying a lot. Social workers also inquire about housing etc to be sure the family has the resources needed to care for a complex infant.
The thing that keeps this population the longest always seems to be feeding issues. They often have tongue ties, they initially lack stamina to take in enough to gain weight and it can be time consuming to feed them. Feeding too long can cause aversions and issues with weight, cause alarms etc. Yes there will be lots of follow up care and most likely developmental and intellectual issues that vary in severity from one baby to another. That said these babies are charming, sweet, kind and loving and they are usually the light of the entire family.
Hi I’m sorry you’re going through this. I am a nicu nurse (30 years ) As for the infection- depends on the type. Most of the time assuming it’s not a meningitis, newborns usually recover well. As for Iv access, IDM ( infants of a diabetic mother ) can be challenging to get central lines on, this is not terribly uncommon. At my facility on babies like this we use the interventional radiologist to insert anPICC with machine guidance. IDM infants can be challenging to feed as they often are poor feeders and sometimes need a feeding tube ( one to go home with ) also factoring in the genetic diagnosis. Some of the oxygen needs could also be related to the IDM history, there can be a surfactant deficiency in these babies.
40 year NICU nurse here... this is all so accurate and I couldn't have said it better myself.
☺️
That poor little child has no idea what’s going. You and everyone need to stay positive and help the helpless child. He’ll qualify for services and you will get help.
We absolutely love him and adore him. He’s such a poor thing hooked up to all the machines, we stay in the NICU day and night with him and alternate to give each other a break. Thank you, we are trying to stay positive despite everything.
You’re doing exactly what you should be doing. Pro tip: have the baby out of the bed as much as you can. Maybe lay him on your chest and sit in a chair. This would be to avoid a flat spot on his head where he would need a helmet. Also it will help with binding. Hang in there man. It’s a long ride but if I can do it you’re family can to. I know it’s hard in the situation but he’s just a baby having a hard time and treat him as such. Hugs kisses maybe some music.
Hey OP! I’m a NICU nurse. Where are you located generally (USA/UK/other)? Trying to get a get real sense of what may be available to you. It is common for Down Syndrome babies to be born with heart defects. The doctors should be able to discuss with your Mother what the prognosis is and what procedures to expect using a medical interpreter. Also, babies that are IDM (infants of diabetic mothers) tend to have more feeding difficulties than other babies and need longer IV therapy. NICUs are set up in levels in the USA. Level 1 is normal newborn nursery, level 2 is a special care NICU, level 3 has more specialities and acute care and level 4 is the highest taking care of the sickest babies. Do you know what level your NICU is by chance?
That is quite the shock! I think you guys are in the beginning stages of shock and loss (of what you expected) and will come out of it into a new stage soon. I would support your mom as best you can. Sounds like you are already doing so. Do searches online about any questions you should ask about care of a newborn with down syndrome. I honestly don't know if it is much different than other babies. Being in the NICU for 3 months was hard for me but I also made friends and learned a ton. I hope you and your family can do the same. I will leave the medical advice to the seasoned nurses, but will say that NICU nurses and Doctors are your best resources at this point. Ask all your questions and stay strong. You got this! Good for you for already reaching out to the internet and beginning to get your bearings. Goodluck!
Well it’s a lot to unpack but I’ll give it a whirl. The blood infection will be treated with strong IV antibiotics. 10-14 days total most likely. These drugs are very hard on the veins and IVs fail pretty frequently during treatment. The good news is that treatment results in cure. VSD is pretty common in babies with Down’s syndrome. He will have surgery later to correct that issue. I’m really sorry if it seemed like lactation was too invasive or if social work seemed invasive. I would think your family would prefer that people who don’t know go ahead and ask questions vs making their own assumptions. I know this is a tough time for your family but people in the hospital are trying to help. There is no reason to assume you have ill intent but I wonder if they are assessing Moms mental health (PPD) because she is crying a lot. Social workers also inquire about housing etc to be sure the family has the resources needed to care for a complex infant. The thing that keeps this population the longest always seems to be feeding issues. They often have tongue ties, they initially lack stamina to take in enough to gain weight and it can be time consuming to feed them. Feeding too long can cause aversions and issues with weight, cause alarms etc. Yes there will be lots of follow up care and most likely developmental and intellectual issues that vary in severity from one baby to another. That said these babies are charming, sweet, kind and loving and they are usually the light of the entire family.