3 week old micro-preemie princess

hawkmommi

Hello all, 

 

I have a little girl that was born at 24w6d after I PROM'd at 22 weeks, small placenta abruption at 24 weeks and developed pneumonia shortly thereafter. She was born right afterwards weighing 1 lb 6 oz, was 1 lb 4 oz by the next day. She was diagnosed with RDS, however we were able to get in the steroid shots so her lungs picked up right right away. She's been in NICU since birth of course.  The first week was indeed the honeymoon period.  She was off ventilator and CPAP by day 10 and was on low flow oxygen only for 6 days.  She had to go back on CPAP because the prongs were irritating her little nares and caused bleeding. It wasn't respiratory, simply giving her nose a break.  A day later, her nurse noticed a heart murmur that wasn't there before and she was diagnosed with a fairly large PDA that apparently closed after birth but reopened. Up until this point she was on full feeds and had gotten up to 1 lb 8 oz. Now, they've had to decrease her feeds which I understand but is frustrating and she's still on CPAP although on room air.  She currently can't get the meds for her PDA because her urine output is too low so the PDA is causing problems with her kidneys. The meds they use for PDAs affects the kidneys and they don't want to cause kidney damage so we are at a standstill right now playing the waiting game.  Thats's my story.  I'm sitting here now watching her monitor about to do kangaroo care if she doesn't have any more brady's in the next 10 min or so.  I started a caring bridge page for her if you'd like to see pictures.  

https://www.caringbridge.org/visit/mckenziehawkins 

Looking forward to chatting with you all. 

ayram

Congrats on your daughter's birth!! It sounds like she is a fighter!!  Her breathing is amazing for such a little one!!

My DS is now 7 months old.  He was born at 27 weeks weighing 2lbs 5oz.  He had a large PDA and had 3 rounds of medication which did not close it (but didn't have kidney issues).  We were told that he would need surgery when he was older, because it wasn't affecting him at the time.  Turns out that it closed shortly after discharge! I hope that she can get the meds soon.

Yay for kangaroo care!   Try to do this as often as they will let you - it's such a great way to bond with your child.  Some nurses may not be open to much kangaroo care, but push for it.  It's worth it!  It's also a nice way to rest while spending time at the hopsital.

Take lots of pictures - you may not feel like it right now, but in a few months you'll forget how small she was.  Pose her with DHs wedding ring, or next to a quarter.

Hope things will go well over the next while.  Congrats again!

caitdana

Hi and welcome. I am in your shoes too with my 2 girls. I had my girls at at 27 weeks (one was measuring 3 weeks behind due to TTTS and IUGR). Sophia was on her vent and transfered to her cpap 3 times before finally she was put on the cannula this past weekend.  Ella was on her vent until she ripped it out a couple of weeks ago and was put on the vent again within an hour (she was the smaller of the 2) and finally today they tried to cannula and I am hoping she stays on it until I can get there in 2 hours. Ella has a heart problem too that will need corrective surgery, they found it when they were checking to see that her pda did finally close. They said that having heart problems can make it harder for the baby to move off the vent or other forms of oxygen. It breaks my heart that I have never seen my babies face without all the tubes on it and she is almost 4 weeks old. Stay positive and come to vent if you need to, Lord knows I have done it on here a few times because these women are about the only ones who understand!

Cara03

Your daughter is beautiful! Congrats!  My son was born at 24 weeks, 5 days and though he was a little heavier (1 pound, 14 ounces), he didn't do nearly as well with breathing. He was on the ventilator for 8 weeks, so McKenzie amazes me with her awesome breathing!

My son had a PDA that didn't close up with meds and he needed surgery. It was terrifying at the time, but the surgery went extremely well and he really started making gains in growth once the PDA was finally closed. I hope your daughter's closes on it's own, but if she does need the surgery, I pray it will go well for you, too.

Your faith shines through on your caring bridge site, and it is truly inspirational. Sending lots of thoughts and prayers your way.

hawkmommi

Thanks ladies and a giant thanks for sharing your PDA stories.  

lgmom2010

Congrats mama! She is beautiful and a little fighter! Hang in there, it will be a rough road. We are all here if you have any ?s

witt0198

I just briefly visited your site, and mainly scrolled through the pictures. She is beautiful, and AMAZING! I'm in awe, that she was on a high flow canula at 9 days old, and that you were able to hold her at 11 days old. Evan was bouncing between the vent and SiPap/Cpap for 5 weeks before he stayed off the vent, and we didn't get to hold him until 3 1/2 weeks old. He was born at 24 weeks too BTW. Prayers for you and your family, I hope her journey through the NICU remainds as uneventful as possible, and she continues to be a little rock star.

Kate621

Congratulations on the birth of your LO! It sounds like she is doing great. I agree with pp that her breathing is awesome! My DS was born at 25 weeks 6 days and was on and off the vent for almost 4 weeks. Come here when you need to vent or have questions. This is a great group of ladies and between us all we have seen just about everything. Sending lots of t&p's for you and your precious girl!

LWilli35

What an amazing little girl you have!  We were vented for a VERY long time, so I'm always so amazed when little ones do so well with their breathing!  Hang in there, Mama! 

njdcgirl

Congrats on your little fighter!  Like the others, I'm so impressed by your LOs breathing!  Andrew was the same weight as your daughter, and he was vented for over 4 weeks - we couldn't hold him until he was 5 weeks old.  So - enjoy that kangaroo care, try to stay paitent (the NICU is a marathon, not a sprint) and be sure to take lots of pictures and ask lots of questions.

BTW, Andrew had PDA surgery when he was 10 days old - they did not try the medicine on him.  We were so scared, but they surgery went perfectly, and he recovered really well.  Hang in there!

AviatorJJ

Have they mentioned if they will do surgery for thePDA?

hawkmommi

Yes and they have been hesitating because she will have to be re-intubated for surgery but at this point we are starting to think that's not so bad considering this PDA is really having a negative affect on her kidneys which can lead to full kidney failure.  Her breathing is doing so well that I think she will bounce back pretty quickly from being re-intubated.  We will request a meeting with the doctors tomorrow.  We are getting a little impatient with the waiting game, there is no treatment for kidney failure for a preemie.

caitdana

Just a random note I wanted to add.  Dont take no for an answer. I have learned that the past 4 weeks. There is someone out there that can do something for your baby. With Ella's heart condition we are told if she does not get to 4 lbs before she has issues there is nothing they can do. We have done our research and there are people out there that will do it. We may have to travel to do it, but there are people so just dont take no for an answer and good luck!

lemen99

she is doing so great! T&P!