2 week old baby

IanM26683

My girlfriend had our baby boy 2 weeks ago and he was in an incubator for at least 5 days at the beginning. His sugar levels were low and he was on a glucose drip. Thankfully he's off that and looks healthy.
Then they found a murmur we were sent to crumlin and they found a hole in his heart. Good news is they were confident it would heal itself. My question is at the minute he feeds and will only take 40 to 50 mls of formula. The nurses in special baby unit in kilkenny say he has to do 70mls. To me it looks like he takes what he wants and has a sleep. He wakes for his feed all the time . The must he took was 60 the other night a little bit of sick but nothing abnormal. I wonder has anyone out there had this with their newborn.

Sligo1

IanM26683 wrote: »

My girlfriend had our baby boy 2 weeks ago and he was in an incubator for at least 5 days at the beginning. His sugar levels were low and he was on a glucose drip. Thankfully he's off that and looks healthy.
Then they found a murmur we were sent to crumlin and they found a hole in his heart. Good news is they were confident it would heal itself. My question is at the minute he feeds and will only take 40 to 50 mls of formula. The nurses in special baby unit in kilkenny say he has to do 70mls. To me it looks like he takes what he wants and has a sleep. He wakes for his feed all the time . The must he took was 60 the other night a little bit of sick but nothing abnormal. I wonder has anyone out there had this with their newborn.

Is there a doctor you can talk to or your GP? You should be having a 2 week check up soon so you could ask? It's very important to realise that some babies that have a hole in the heart are known to have a decreased appetite as opposed to babies with normal hearts so you can't really compare your wee baba to someone else's who is completely healthy without this condition. I think it's really important you ask your doctor this question. Keep a log of when and what your baby is taking and also his wet and dirty nappies and show your doctor. Congratulations and I hope all goes well for ye

IanM26683

The thing is he is still in hospital and they are adamant he should be drinking 70mls every feed. I have looked up online about his condition and how it affects his feeding. He tires that bit more quickly. But so far from his nappies everything looks in working order for him. My girlfriend and I are becoming very frustrated with the hospital who don't seem to be answering any of our questions. We have a check up.in crumlin on the 15th of next month so I'm thinking of asking up there for their diagnosis.

Sligo1

If he is still in hospital than I would say you need to listen to the medical staff. However, you can't force him to take something he does want either. You could request to speak to a paediatric cardiac specialist and voice your questions to him/her? Or to your baby's consultant. You have the right to speak to a doctor if you feel your questions are not being answered by the nursing staff. Please don't let them fob you off if you have any questions or concerns.

IanM26683

Sligo1 wrote: »

If he is still in hospital than I would say you need to listen to the medical staff. However, you can't force him to take something he does want either. You could request to speak to a paediatric cardiac specialist and voice your questions to him/her? Or to your baby's consultant. You have the right to speak to a doctor if you feel your questions are not being answered by the nursing staff. Please don't let them fob you off if you have any questions or concerns.

We will be in crumlin on the 15th so ill voice whatever questions I have to the consultant. He was very good last time. I really feel that even the doctors are not answering our questions. Or worse have no.idea what they are doing.

Sligo1

IanM26683 wrote: »

We will be in crumlin on the 15th so ill voice whatever questions I have to the consultant. He was very good last time. I really feel that even the doctors are not answering our questions. Or worse have no.idea what they are doing.

Ok well firstly, if your little fella is still in the hospital I wouldn't wait 2 weeks to ask any questions you have now. That 2 weeks will seem like an eternity. And as well as that your questions need to be answered in a timely manner so you as the parents are able to care for your baby in the best way possible.

Secondly, and I tell this to all my patients... Write a list of every question you have. You need to write a list as when the nurses/medics come around and they are rushing it is very easy to forget what you want/need to ask. A list will help you and also help the staff understand what you are trying to ask.

Thirdly, medical staff are very busy and unfortunately because of this they may appear dismissive. But this is where you need to stand up for yourself. You need to be assertive and keep asking until you are happy that ALL your questions have been answered. Show them your list if you need to. If the nurses or doctors are not able to answer your questions due to lack of knowledge or whatever, then you need to ask them who you can talk to who will be able to answer your questions adequately. If this means getting a referral then asked to be referred.

Your list of questions is extremely important and you as parents need them answered appropriately. Goodluck.

Jerrica

Our 17 week old little girl was born with what was charmingly called a "raging murmur" by a Doctor in Crumlin. It's a moderate VSD, extremely common but very worrying nonetheless, no parent wants to hear that their baby has a congenital heart defect. At the last check (about a fortnight ago) it still hadn't closed so we're back in January.

From what I know the big worry about murmurs is the impact they may have on a baby's development. Like you say it can tire them out so there's a big concern about weight gain and the worry of failure to thrive. I've been breastfeeding since the start so it was very hard to qualify how much she was getting, we just went by the scales. If she was gaining weight, had good colour, and didn't sweat or get very flush during feeds then we tried not to worry.

As s it turned out, our baby got tired during feeds because of her tongue tie, not her murmur. The vast majority of babies who have a murmur (and it really is super common) are just fine with it.