two years old

two years old

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Has your water broken?

Dum vita est, spes est
While there is life, there is hope.

The site I first found (and most women find) after rupture, kanalen.org/prom, is currently down.  BUT– I am so excited to announce they have a new site: inkan.se/prom. It’s such an amazing resource.  I am still glad you found my blog, though.  You can find a copy of kanalen.org/prom’s list of instructions to follow post-pprom here .  These instructions are essential if you have ruptured very early.

Above all, do NOT give up hope.  This is a terrible pregnancy complication, I know you are scared.  Despite what your doctor may tell you, there are babies born every day whose mothers ruptured as early as 12 weeks (some even earlier).  Many of these babies not only survive, but thrive.  As hopeless as your situation feels, you have every chance of bringing your baby home.  You are your baby’s champion, the one who will fight and never give up on them & they know this.

There are many channels of support available to you.

Feel free to email me:  brandy [at] superboyclark [dot] com

Other places to find support are:

The pPROM Facebook group

The BabyCenter pPROM Support Group

You can find studies about starting vitamins C & E post-rupture here.  The details about the vitamins and supplements I took are listed on this page.

If you have any questions or if I can help you in any way, please email me.

One Year After pPROM

We’ve been adjusting to life at home after Clark’s 75 day NICU stay. You can now follow us at:

http://www.superboyclark.com

Hi everyone.  I’m really sorry I haven’t been able to update lately.  Between the back and forth to the hospital, being there at scheduled times, pumping and having to sleep at some point…I’ve been slow at posting updates.

Clark will be 6 weeks old in two days.  He weight 3lbs 10oz and is 16.5″ long.  He’s been doing normal preemie things lately like desatting and having heart rate drops.  Thankfully, those have been more widely spaced over the past few days.

Since my last update, Clark has gone from the high frequency oscillating ventilator to the conventional vent to the cpap and now to the high flow nasal cannula.  He’s being slowly weaned on the pressure and hovers between 25-30% oxygen.  He started bottle feeding three days ago and has one bottle per day in addition to his regular gauvage feedings.  He’s not been able to drink much from the bottle (1-5ml) before having a heart rate drop, but I’m confident that he will get there.  He gets 16ml/feeding at present but that goes up by 1ml every 3 feedings.

Thank you all for keeping up with Clark’s progress and the prayers.  I know that many of you who read are in the same boat that we have been/are in.  This isn’t easy and it is scary but it’s possible.  I don’t have a ton of free time, but if you’re going through pPROM now and ever need anyone to talk to, please email me and I’ll get back to you as soon as I can: brandy.l.kelley@gmail.com.

Week 2: The Rollercoaster

So, everything everyone says about the NICU rollercoaster is true.  As of my last update, Clark was just trucking along.  Then, last week he got a big nasty infection caused by a gram-negative bacteria called pseudomonas.  “One of the worst bugs our there” according to his doctor.  The day after that, his PICC line malfunctioned and all of the fluids going into it leaked into the area around his lung sending his blood pressure and oxygenation into a tail spin.

The pseudomonas literally had him on the brink of life and death.  He was unresponsive for quite some time and having seizures.  Needless to say, I didn’t sleep or eat much last week.  They were able to drain the area around his lung and his oxygen saturation and blood pressure have greatly improved.  As of the last culture, there was no evidence of the pseudomonas, but he will continue antibiotic therapy for at least a couple weeks.

He became so swollen because they had to pump him full of fluids so his blood pressure would come up.   He is slowly eliminating those fluids, but it might take awhile.  We just got news that his new PICC line was placed, and he apparently tolerated the procedure well.  The biggest deal now is for him to be able to rest, not get any new infections, have a good PICC line…etc etc etc.

As I’ve been telling everyone in person, we need every prayer we can get.  This is a scary, bumpy ride.

Baby: Week 1

I want to thank everyone who is visiting my site.  The more information that is available for people experiencing pPROM, the better…so if you have a pPROM story to share or haven’t participated in the survey yet, be sure to stop by there and do that.

Clark is one week old today.  He’s off the nitric oxide, and the blood pressure medicines.  He’s getting his PICC line sometime today and another iv line to do blood draws from.  This all has me stressed out just because of the risk of infection.  He’s been breathing room level oxygen for a few days now and his ventilator settings have been dialed back.  It’s hard to see him working to take breaths on his own, it looks so uncomfortable..but I’m overjoyed that he has lungs and is able to do that.

A hard part about the NICU is getting to know and trust one nurse, then a couple days later she has her days off and might not be back again…and having to get to know another nurse.  It’s hard on stressed out parents.

Clark has lots of things done from day to day.  He’s flipped every 8 hours since he has limited mobility because of his ventilator.  Diaper changes and temperatures are a big deal to him, any stimulation isn’t good on such a tiny baby.  So far though, he’s been tolerating it pretty well.  He has numerous tests run daily.  And, he still hasn’t passed his meconium.  He might get to try a milk feeding soon…and hopefully that will stimulate his system and get things moving.

Overall, he’s doing well.  This week just has a lot of new things for him to get through.

I’m healing well from my c-section, except that I think I have a bladder infection.  The reason this really worries me is that I’ve been having the pain for quite some time now but I didn’t realize it was something other than my incision because I was on the pain medicine.  I’ll probably have to go back to the hospital tonight because I think I just started running a fever.

It’s been a long week, keep us in your prayers.