Tuesday, November 19, 2013

NICU - what I'd do differently

The other day I posted a summary of our experience with Maddy in NICU three years ago (ironically, she was released exactly three years and one day before my due date with this little one!) It's not often that people get the chance for a "do-over" for an experience like this, but in a way we do. Having been through NICU once and getting to know the ins and outs of it all, I think I know better now what to ask for, what to insist on, and in general what I'd do differently. Also for the hospital, Maddy was their first diagnosed case of diastrophic dysplasia so they (hopefully) are now more prepared and informed for a second case. 

A few weeks ago I met with the neonatologist and had a couple of requests for him. I'll summarise them and his response below.

Firstly, and most importantly (in my opinion), I do not want to use the orthopedic doctors at this hospital. About five minutes down the road, run by the same hospital authority, is a pediatric orthopedic hospital. They also run a spinal clinic. ALL of the specialised pediatric orthopedic doctors, AND all of the specialised spinal orthopedic doctors are based out of this hospital instead of the hospital where we gave birth. When Maddy was born, I didn't realise this at the time, but she was seeing a general "adult" orthopedic doctor. I have requested that we use Maddy's current pediatric orthopedic doctor instead. This will give us a more accurate picture of the state of this little one's orthopedic issues, and in particular, her spine. The neonatologist informed me that within the last year or two, ALL of the NICU orthopedic issues are referred to this pediatric team rather than the general orthopedic team - so hopefully that makes a big difference for our little girl!

Secondly (and this one is maybe a little selfish on my behalf), when Maddy was born, she did not need any emergency breathing assistance. For her first few hours, she was breathing independently. I've asked that if this one is similar, if we can have even 15 minutes with her in the delivery room before she is taken to NICU. The neonatologist's response surprised me - he said of course, and that I could even try breastfeeding if I wanted! Maddy on the other hand was on an IV only for her first few days and didn't start taking any milk even by NG tube until she was about 3 days old! In fact I wasn't even cleared to attempt to breastfeed until she was over three months old.

Speaking of breastfeeding, another big thing for me is the way that the hospital manages the breastmilk. They say that they support breastfeeding but many of the policies imply otherwise. You can read some of my previous frustrations here - but in short, I want to insist a) on 24 hours notice for any change in feeding schedule so I can provide them with the right amount of milk in the right number of bottles, and b) absolutely no formula ever for whatever reason. With the formula, Maddy was fed formula multiple times for different reasons. On some occasions, it was because of a change in feeding schedule (eg, going from feeds every 3 hours to every 2 hours). On other occasions, it was simply because a nurse forgot to defrost a bottle. While I am not anti-formula in general, it bothers me greatly that they were giving this milk which is dairy-based to a child with a dairy allergy. I don't know if she reacted to it back then because I wasn't there, but when she was older she had strong reactions to dairy (including formula), producing a lot of mucus, sneezing, some swelling of the face etc... These issues could have been disastrous when combined with her airway issues! The doctor was supportive of my position - however I also know that what the doctors say is not always what the nurses follow through with.

I haven't asked this yet, some things I think we are better off waiting to see what they say first - BUT if we are in the situation again where the hospital is not actively treating this child but rather waiting for her to outgrow her stridor, I want her to be discharged and followed up as an outpatient instead. I wanted this for Maddy too, but first time around they were far more cautious, and we weren't prepared to discharge her against medical advice. This time, however, I will definitely be much more strong in requesting this. 

In addition, I feel as though Maddy was fed via NG tube for far too long. This often leads to speech delays because the muscles in the mouth aren't stimulated as much as if they were feeding via breast or bottle. Speech delays have been our greatest developmental struggle with Maddy and she's had to work very hard to catch up! With this baby, I do not want her to be fed via NG tube as a precaution. If they feel she needs to be fed via NG tube for medical reasons, I think they should at least do a swallow study to "prove" the medical need for it - particularly if it is to be for more than a week or two! 

A big thing for me is the visiting hours. Visiting at this NICU is highly restricted - parents only, and ONLY between 3pm-8pm. Anyone with children aged 3 and 5 would know that this is the worst time of day. Lana gets off the bus at 3:10, then we have about 3-4 hours in which to play some games, have a snack, do a bit of homework, piano practice, violin practice, eat dinner, have a bath and get into bed. Ideally, I would like to go to the hospital either when the kids are in school, or when they are in bed at night. If this little one is in NICU for only a week or two, I think we can manage. It won't be easy but I can be flexible. If it is for four months however, it would be HUGELY detrimental for our other two kids... I would hope that the hospital could be accommodating, however knowing them, I know it's not likely. I recently learned that a friend of a friend requested to see his daughter outside of visiting hours in a one-off situation and was rejected - and she passed away only 2 or 3 days later :( I honestly don't know how to approach this issue with the hospital - again I will see what happens first... 

After I met with the neonatologist, he said to me "Don't expect that just because you had one experience with Maddy that it will be exactly the same with this little one as well" - he said it in a positive way, that maybe things will be easier this time around. But coming from the same man who, when I asked him "If we had to do it over, what would you do differently during Maddy's stay in NICU", told me "Absolutely nothing" - I'm really not sure what to expect. In addition, he will be away for the whole of December so unless I have the baby in the next week and a half, he won't be there anyway.

I'm really hoping that we won't have a repeat of our last NICU experience - but I guess we will have to wait and see. We are more informed now, as is the hospital, so fingers crossed we will have our little girl home as soon as possible :)


  1. You sound determined! I'm sure you'll be the warrior this little baby needs!

  2. Speaking as a NICU staff member, may I suggest that you set up a meeting with the NICU nurse manager? She is the one who has the control over the actions of the nursing staff, not the neonatologist. I'm sure she will be happy to discuss your concerns. Best of luck to you!

    1. Thanks for your comments Cathy, I will do so - I know (from experience) that while the doctors make the medical decisions, it is the nurses who are more responsible for implementing the day to day things and "enforcing" those decisions.