Positive Milestones for 25+4 Weeker?
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!!!
Re: Positive Milestones for 25+4 Weeker?
there's a preemie resource blog that'll i'm sure lift your spirits as well as keep you educated on different things.. www.preemiemomblog.blogspot.com
It's written & contributed by moms of preemies.. it's a GREAT reading place.
Good luck with your baby! It's hard in the NICU..but you just need to take day by day..
First, congratulations, mama! Our DD and first child arrived at 25w2d. If you have seen one 25 weeker, you have seen one 25 weeker (as they say). Your mind if probably going a thousand miles per hour trying to prepare for this tiny wonder who has already yanked the rug out from under you by arriving in such an unexpected way. With that being said, pace yourself. Our NICU journey was 96 days and nobody could have prepared me for each twist and turn. I don't think I would have wanted to know, quite frankly.
You and your NICU team are going to focus on the tiniest little increments of milestones that will add up to big steps towards going home. You will measure weight in grams, painfully, every night. You will gauge BM consumed by your baby in milliliters at each feeding. You will watch nurses weigh your baby's diapers to see how much output is produced based on the input. Nurses will count every little alarm that your baby's body sounds off. You will go nuts with all of these details. My advice is to savor the moments of being close to your baby, singing to your baby, and feeling like a family with your baby when you are stuck in the NICU. Take lots of pictures and capture the days in a journal. The basic needs of breathing independently, maintaining body temperature, gaining weight and learning the suck/swallow/breath mechanism of eating will be your "golden ticket" out of the NICU!! GL, mama, and my heart is with you.
This is really great advice. I had a 29 weeker, but if I can add on to this, I would say that through exposure to this process you will become almost an expert at reading the different little movements and habits of your little one. Try to make sure that you stay focused on that and definitely keep a journal of every day. I look back on ours today and I smile at what memories that each of those entries conjure up. Not every day is a great day - you will cry and you will smile, but stay positive for your sweet little one. Good luck and stay strong!
Denesdia said it perfectly - My DD was 22w 5d - and was given less than 7% chance of survival - we actually had a pretty easy NICU stay compared to some but we sure had our share of the "roller coaster" also - we went home 117 days later without medications or monitors. I wasnt able to Kangaroo nearly as much as I would have liked because of breathing issues as well but i know that when I was able to - it helped so keep asking to do it! I also kept a journal - and used it to write to DD about everything that was happening - and it also helped me keep track of what was going on medically. Like PP said, you will count every oz, ml, and tiny increments of oxygenation etc. until one day things just seem much better - no one can prepare you for what your NICU journey will be like because every baby is different. And Im sure the doctors and nurses are simply being cautious because they know these little guys can have great days and terrible days and everything in between. I almost went crazy with worry - until I realized that I had to stop focusing so much on every .1 oz she gained or lost and start to focus on my baby - I read to her and sang to her even though I couldnt touch her and everyone around me must have thought I was crazy but it helped me to be strong and feel connected to her.... good luck and keep us updated
My good friend's baby boy was born at 25 weeks and 1lb, 12 oz. He spent 90some days in the NICU and definitely had good days and bad days but he is now 16 months old, walking, babbling, and adorable.
I know some big milestones for them were being able to hold him on a regular basis, getting to change his diaper themselves, etc.
Best wishes for you and your LO. I'm so sorry you have to go through this.
I have followed this blog; her son was born at 25 weeks. He is now 73 days old!
https://athreeecircus.blogspot.com/ (sorry I don't know how to make it a click link!)
I think the blog will help you - start with the day he was born and you might be able to learn some of the interventions that your child might (or might not) face, positive milestones, set backs, etc. I also thought her blog format would be very helpful for any parent in the NICU - recording the same "categories" each day in order to track progress.