3 steps forward 5 steps back

Jenrn2203 · March 2013

Our 24 weeker who is now 29 weeks graduated from the vent on Monday to si pap then vapor therm yesterday well we got a call this morning that she had a horrible night and had to be re intubated, I just feel so awful knowing she had a rough night, breathing on ur own is a hard thing to do. I know we call it a nicu roller coaster ride but I am just heart broken to see her back on the vent but I know this is what she needs to get stronger. Please keep us in ur prayers! Anyone have any similar stories?

jbranden12 · March 2013

((hugs)). I'm sorry your DD had to be reintubated. You are right that it is what she needs to get stronger. We experienced a similar thing yesterday with our Anna. After 2 days with no respiratory support she got tired and needed to go back on a nasal cannula. I was very sad but I understand that she needs her energy to work on other things right now, like growing and feeding. If she uses it all on breathing, she'll be here for longer in the end.

Courtneyw04 · March 2013

Our one little girl was always getting reintubated. It was always so hard to see that dang tube down her throat again. Now she is our loudest baby! Soon this NICU time will be a thing of the past and you will be home snuggling your little girl.

thishappyhouse · March 2013

Im sorry for the setback. My daughter had 3 reintubations and I remember the how frustrating and scary it can be. She was eventually extubated for good at 32 weeks gestation after a "priming regimine" that worked well for her. She sailed through NIPV and CPAP and was on nasal cannula less than 2 weeks of being extubated.

lot of prayers for you! I hope she does a lot of growing and they can try again soon.

Bluebird2318 · March 2013

I'm sorry for the setbacks; it will get better! I had a 29-weeker, and although she was never on the vent, she did have a number of setbacks while on the nasal cannula. Your daughter is strong; she has already proven that, and she will keep proving it as time goes on.

Brummy14 · March 2013

Hang in there, I know it's tough. DD2 required three attempts over the course of a month to go from high flow to low flow cannula. With the first two attempts, she would get so wiped by day 3 or 4, have tons of brady and apnea spells...so much so that the docs thought she might be sick, and she got a full work up each time.

She got there in due time...she came home on a teeny amount if o2 while we got her over the NG tube hump, and now she has been o2 free for two weeks, now!

Hang in there ... I know how much I got my hopes up with every forward step, even though I knew what was possible...and how things often ended up.

punky917 · March 2013

I am so sorry you are going through this. My 26 weeker was also on the vent roller coaster and I thought he would never come off. I know it doesn't seem like it now, but your LO will get strong and need less invasive ways to get her O2. Sending thoughts and prayers your way!

DrRx · March 2013

I know how frustrating respiratory setbacks can be. It wasn't until the 2nd time that my daughter tried the CPAP that it stuck. My 26-weeker was on the vent for 3 weeks. Then she was on the CPAP for about another month or so, and then back and forth between high and low flow nasal canula. She ended up coming home on oxygen (very small amount) and slowly but surely weaned off. T&Ps that she is able to get off the vent soon. (((hugs)))

Cara03 · March 2013

I am so sorry for your setbacks. Reintubations were devastating to me, too. My 24 weeker had several reintubations before he finally kept it off at 32.5 weeks, after receiving steriods to help lessen the swelling in his trachea. I remember feeling like he would NEVER be off the vent for good. It is ok and perfectly normal to feel all these feelings.

You and your baby girl continue to be in our thoughts and prayers. I've mentioned your story to my husband as we had such a similar experience with trendelenberg and all, and my husband will periodically ask about you out of the blue, too. You have lots of people rooting for you and your baby!

Jenrn2203 · March 2013

thank you so much for thinking of us. this for sure is a roller coaster ride. i appreciate your advice to me and your input of your experiences. we have faith, our peanut just needs time! thanks again, you made my day!

krstnannd · March 2013

This JUST happened to us a week ago yesterday. Our LO decided she did not want to keep breathing on her SiPAP so they tried intubating her and it made it worse. She actually got shipped out to the University for observation, I have called almost every three hours on the dot for the whole week to see how she was doing. She'd have her set of spells here/there but that is normal for 31 weeks. When they first put her on the SiPap they told us, sometimes the baby gets tired, so try and remember that although this was not our choice to be on this rollercoaster, it is going to happen. Sometimes we take a step forward too fast for them and they push back. The babies know what is best for them, and the nurses and doctors follow them. Try to be calm (I know first hand this is not an issue) the fact they are here is such a miracle, they just require a little more observation. My girls are now 32 weeks 3 days and going through their spell stage, so heads up this happens around 31 weeks, maybe your LO is just starting early! Its all totally normal!

I know I probably didnt help.

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