Any experience with any of these challenges?

Kiki11

Our 25w2d boy had a good first 'honeymoon' week, but his second week of life was extremely difficult.  He had to go back on the Hi Fi ventilator and he's been there for 8 days now with o2 settings ranging from 65-85% most times.  He's doing a lot of drifting with his oxygen saturation.  Also, the scariest night was Thursday.  He stopped peeing completely that day and his blood pressure dropped incredibly low (so low the cuff couldn't pick it up and they needed to put in an arterial line). He was so incredibly puffy from retaining fluid that he didn't even look like our baby.  It took them 3 attempts to get the art line in, but finally they did.  They also put in a catheter, but still no pee.  Finally they started him on dopamine to help his blood pressure and urine output because they figured enough blood was not getting to his kidneys with the low BP.  After that his blood pressure came back up and he started peeing again.  They are having some difficulty weaning him off the dopamine and the ventilator.  They tried albuterol for his lungs, but it really only increased his heart rate too much.  Next they are trying hydrocortisone to see if it helps with the vent settings and weaning him from the dopamine.  We are just terrified because for his first week everything was just 'typical 25 week preemie stuff' but now they tell us this is not typical.  And we're scared.  Does anyone have any experience with low BP, high ventilator settings, or serious lung damage?

FisMom

No experience or advice but I am hoping for you that things improve quickly. One thing I learned in the NICU is that things turn around very quickly as babies mature. Something will go wrong and seem hopeless, and then two days later, it's almost gone and totally forgotten. I hope the next week is a better one for you.

njdcgirl

((HUGS)) hon.  Sorry things are so scary right now.  Andrew had a lot of this...hopefully I can remember (I was awful at keeping track in the beginning).  I'm glad he is peeing again - means his kidneys are working! :-)  Does he have a PDA?  Andrew had the surgery (at 10 days old), and eventually all his blood pressure issues went away.

1.  Andrew had an ART line for probably the first several weeks of life.  It's not unusal, and allows them to keep track of the BP constantly (and take blood draws too.)

2.  He had bp issues both before and after the PDA surgery.  He was on dopamine at about a week old.  It helped, but they had to keep upping the dosage.  They added in the cortisone a few days after the surgery.  There was a few scary days there right after the surgery where they kept upping the dosage of the dopa hour after hour, but then he stablized and started to slowly get better.  (FYI, the hydrocortisone did not noticably help with his lungs, although we were hoping for some benefit).  I don't exactly know when his bp was "under control" but probably not until week 3 or so.  I've noticed most micropreemies in our NICU are b/p issues, and many have the same treatment as Andrew (and your son) did.  I'm not sure if this is "uncommon".

3.  Andrew was on the hi-fi jet for about the first week of his life, then they moved him to the regualar vent, where he stayed for about another 3/4 weeks.  He also got albutorol when he began having more severe desats, and it helped. We also used steriods (Decadron) to help his lungs to get him off the vent and onto CPAP.  He drifts quite a bit with his saturations, even now; although his normal o2 requirements haven't been as high as your son.

ETA: In my NICU, they try not to use the Decadron until the baby is older than 27 or 28 weeks.  He was on one 5 day course (large dose in beginning, then weaned down through the days.)  I have read blogs where this is the golden ticket off the vent for many babies who have high o2 requirements and they seem stuck.

All of this is so scary.  I know our situations are not the same, but I do remember how stressful this is (still is, actually, even 8 weeks in).  Keep asking your doctors and nurses questions.  What exactly is "uncommon" to them.  Ask the plan of attack.  Ask what plan B is if plan A doesn't work.  And I hope he turns a corner soon.  Hang in there.  Thinking about you.

Leigh71

Hello.  I went thru this with Lauren, my baby A.  She was so sick.  She was on the oscillatiing(hi-fi) vent for 10+ days...  it was her 3rd vent.  The first 2 vents were not helping her.

She had a "via" machine.  It is a machine hooked up to her UAC (arterial line) and they checked her blood gases every hour, sometimes...as often as every 15 minutes.  She had to get a blood transfusion....2 times.... lots of pokes for IV's....  Also got a UVC put in.  A few days later a PICC line in.  (the long term IV) line.  She had a lot of the issues you are mentioning....urine output, very, very high heartrate....  so many things my poor baby went thru.  It was so very stressful for us, and I was not able to hold her or touch her for 12 days.  That was 12 awful, long and stressful days.  I cried when I first saw her peek at me and open her eyes. 

I thought, Thank God.  You are ok, you just looked at me.  My daughter had very sick lungs, and to this day...they did sooo many tests and are still not sure what exactly caused everything.  Def. RDS... (repsiratory distress syndrome)

BIG HUGS for you.  Message me anytime.  I'm still in the NICU.  sometimes I don't get internet connection very well. 

MELANIEKAY26

I had twin boys at 26wks, and my twin b, Finn, had a all of these issues, it's incredibly scary.  I remember staring at the monitor after they put in the arterial line just watching his blood pressures fluctuate, the lowest they got was 11.  He was on Dopamine at the max dosage, he was also on lasix and getting blood and platelet transfusions constantly it felt like to help draw the fluids back into his cells and help his blood pressures.  He was on an oscillator, and the cause of his problems was his bowel perforated when he was 3 weeks old, they did a surgery to repair it, and he did well, but then all of a sudden his kidney's just started shutting down, and he couldn't pee.  I remember my husband and I praying for pee in his diaper.  And because he couldn't pee he went from 1lb 11oz to 3lb 5oz in about 4 days.  I wish I could tell you that Finn rallied, because that's all we wanted, but he also had a grade 4 brain bleed.  But I know the depths of your fear right now, and I pray that you, and your husband and most importantly your baby will be ok.  Also, I forgot the steroids, they can do wonderful things.  they did put Finn on them in the last week of his life, he went from zero urine output to 18cc diapers, and the doctors will tell you that they don't know what the long-term effects of the steroids are on kids.  Trust me- I'm pretty sure it can't be as bad as losing your child.  But that's a decision for you and your husband to make.  Again I'm thinking of you, I saw that you live in Mass, so do I, but I'm actually at Women and Infants.  I've officially been there 3 months as of August 19th, if you ever want to private message me to talk, that would be totally fine.  Even just to vent about all of these issues, and having a puffy baby, I know, I've been there, it's incredibly hard.   Again, you all are in my prayers.