Positive Milestones for 25+4 weeker?

[RoseQuartz]

New to posting here and wasn't quite expecting to be asking these kinds of questions and quite so soon as I am sure no parent of a preemie does!  At 24 weeks my water broke and after spending a week in the hospital they induced labor due to elevated white blood cell count and high baby heart rate indicating I might be developing an infection.  I was able to give birth vaginally to my 1lb 11oz baby boy and have been letting go of that nothing is remotely anywhere near what I wanted or expected in our childbirth/parenthood journey.  We were planning to birth at a birthing center, I have never been admitted to a hospital before and see herbalists and naturopathic doctors, etc.... so any kind of medical interventions and drugs stress me out!

Our LO has been strong breathing on his own at birth and on CPAP since being in the NICU.  Last week, his bilirubin level increased and they said he has colostatic jaundice that needs to be treated with meds and they continue to search for a cause with no insights from any testing they have done.  They have begun to talk about doing a liver biopsy or a catscan type test (with ingesting radioactive materials), which the doctors reassure me is never done on babies this young, but they are making me really nervous with how much they mention it as a next step.  His breathing also began struggling at the same time and they put him on an IMV (intermittent mandatory ventilation) through his CPAP which thankfully is not invasive like if they intubated him. 

All of that to just give you an idea of how he is doing which is well given the circumstances with minor concerns at this point. 

When we ask the doctors for positive milestones (like increased feeding, weight gain, breathing on his own, etc.) they are very hesitant and some doctors can't even wrap their head around our question continuing to talk about risk of infection and all the things that could go wrong.  We are not unrealistic that he will have good days and bad days and still has a long time in the NICU because of how premature he is AND is there anyone who has been through this with a 25 weeker (born under 1000g and just hitting that mark recently) who can speak to positive things to look forward to in terms of his growth and development?   Any websites or books to check out?  The ones we have on breastfeeding and kangaroo care all seem to be about 30-32+ weekers and we're not there yet.  I know there is not a lot of info because it is not usual and also that there is no one set path that a baby this small would take.

We want things to look forward to and also want to be sure we are asking good questions and advocating for things that are appropriate for his age and size in terms of breast feeding when he is ready, kangaroo care which sometimes they tell us he can't do because his breathing is not stable, and any early intervention (they gave us literature about specialists... but who would he need to see and when is not very clear...)

THANK YOU!!!

[Ratchet]

MyDD was a 27-weeker and 1100g at birth so not as small as your peanut.  I personally found it easier to ask about 'criteria'' for stuff, not 'when.' Like, what is the criteria for being able to hold him (not just "breathing is stable" but "when he's back on CPAP").  We also looked forward to her gretting oral care with breastmilk, then tube feeding breastmilk, then increasing feeds, then oral feeding.  But if you just ask "when can he try breastfeeding, yea, I bet they talk about all the things between here and there.  But instead ask "what is the next step in feeding and what is the criteria for advancing.'  That awknowledges the 'ups and downs' while still giving you hopes about the positive things in the future.  I am in healthcare professionally and I have to admit I never felt the urge to advocate for much that wasn't already on the doctor's agenda, but I think we were also in a great NICU.  I don't want to say just trust your doctor's blindly, but also I found it helful to aknowledge that most of the things that seem intuitively 'right' with a term baby don't apply here.  This is going to be an un-natural experience in so many ways because the ideal natural 1st choice, your uterus, is already crossed off the list.  For now- if his skin can handle it- provide boundries with your hands (ask the nurses if they haven't talked about it- but like cupping your hands around his feet to keep his legs flexed in a more 'fetal' position.)  Talk or read quietly, sitting at th bedside or when you can hold him.  Skin to skin as much as you can as soon as you're able.  See a lactation consultant and the whole feeding team (which will also be a speech and language pathologist and/ or occupational therapist) as soon as he starts oral feedings.  After you go home, you will likely see a retina specialist, a NICU follow-up team, your regular pedi, a physical therapist, and an occupational therapist, and more if he has other issues.  But that is a ways off. 

For now, you've probably heard it too much, but take it one step at a time.  So, where is he at now and what is one step in front of us.  There is plenty to keep you, him, and the doctor's busy with that.  Thinking too far ahead would have made me crazy because being in the NICU felt painfully slow.  And anytime someone told me something would happen, and then it didn't made me furious and sad etc but if no one made any promises I could cope better. 

[RoseQuartz]

Thank you Ratchet!  It is very helpful to hear how to language things so that we can get the answers we're looking for, which will support us in being realistic and ease our minds in trusting NICU professionals to care for our son.  I like your reminder that my uterus is crossed off the list, which for me is a very humorous reality that I thought I was in control and I am really not!  We continue to do the best we can alongside doctors and nurses and practice letting go and being present and learning a lot on this journey as parents.  Thank you again from sharing from your experiences it is very helpful to hear from you =)
 

[darthtunaqueen]

Feeding a tiny little one is sometimes (usually) a fairly frustrating and lengthy process, and it'll seem like the longest time when he gets to that point!!

Was your little one on TPN?  TPN is often the biggest culprit in choleastasis, usually treated with some ursodiol and monitoring of the conjugated (fat soluble) bilirubin.  

For the feeding, our babies must be off any kind of respiratory support (we don't really do nasal cannulas in our unit, because oxygen is a drug and we don't like using it unless we have to), as the CPAP/BiPhasic can blow the milk into their lungs, which is the opposite of what you want!  Babies can eat on nasal cannula!  Their breathing must be stable (not too fast, or working too hard), as we don't want to burn any extra precious calories in stressing them out.  The little ones, such as yours, are often on feedings every 2 hours, and that is transitioned to ever 3 around 32 weeks (sometimes earlier).  When it's every 3 hours, then we start to watch to see if they wake up for feedings, as that's a sign that they're getting hungry.  They will start to show hunger cues (lip smacking, chewing on their hands, whining, crying).  We introduce oral feeds slowly, often starting with just straight out breastfeeding (although our protocol is to start with a freshly pumped breast while their NG feeds are going).  The initial BFing will be mostly tasting/licking the nipple, he may latch and suck a couple of times, they don't have the chin and jaw muscles adequately developed for a really strong suck, but it's a start!!!!  Do this whenever he seems interested (which is of course, at 3am when you're not there!).  Progress from there!  Sometimes their co-ordination isn't so great and they get hooked on the sucking and forget to breathe (and then desaturate).  

Some babies develop nipple confusion, some do not, it's very baby dependant.  Often in the early stages, the baby is still receiving full NG feeds, then a bottle is pointless anyways.

One thing is to do oral care with a q-tip dipped in your milk as often as possible, trying to get a kid to eat with oral aversion SUCKS (ok that was a terrible pun).  

I wish you the best of luck with your little one!!!

[RoseQuartz]

darthtunaqueen, thank you for your very detailed response and all of this is very helpful to know! 

My little one is still on TPN.  Right now they have him intubated on a ventilator so they put him back on TPN after he was off it.  While he was on the IMV he got a lot of air in his stomach.  They switched him back to bubble CPAP and the andersen tube, which didn't seem to help.  The doctors said because of some episodes he had while on bubble cpap, to take the stress off him abdomen/lungs because his abdomen was getting red, etc. and because they didn't like if they needed to resuscitate him with the mask and bag that his belly was already very distended they intubated him.  I wasn't happy about the intubation and he looks much more comfortable a day later, his skin is actually healthy looking and rosier and he has been able to sleep.  They won't start breast milk feeds until he is off ventilator and his bilirubin levels had just started to decrease when they had him off TPN for a bit =(. 

He is always sucking on his feeding tube and when I kangaroo care with him he smacks his lips and even when he hears my voice he begins sucking movements!  Once I put him to my nipple when he was very fussy moving around while kangarooing and he did lick it and give it a little suck.  Good to know about oral care.  WHen I asked about BFing, one of the doctors told me they do bottle feeding first because they are worried about desats due to lack of coordination... =(.

Thanks again!
 

[Ratchet]

Well, to emphasize PP point about breastfeeding- if DS tried first with 'breastfeeding' immediatly after you've pumped while getting NG tube feeding, he is learning about latching and feeling full without really much risk of any desat due to lack of coordiantion.  so that would be one thing to advocate for, if it comes up.  With our DD the issue was that she was so sleepy that she essentially never nippled much for feedings until she'd been home for 2 days-- so, hard to know if it will be an issue but something to ask for.