The ventilator roller coaster

jbranden12

Did your preemie go on and off and on and off the vent? We had to go back on the vent after Anna's brain bleeds on Sunday and have been there ever since. Last night she was down to 20 bpm and 21% oxygen which is room temperature so i really hoped we might be able to get back on the cpap soon. I love kangaroo care but every time weve done it, it has had a traumatic ending due to the vent messing up. Water in there, or it moves in a strange way. Last night it ended on her dropping so low they werent even sure she was intubated anymore and they were bagging her and I was crying.

 Anyway, I had high hopes but I went home to shower and nap today and when I came back she had gone downhill and is now at 30 bpm and 25%. I am really upset and emotional. I know it's because we are still looking for signs to either keep fighting for her or let her go due to her level 4 ivh, but I don't want to read into something that's normal.

The nurses have been saying that it's normal, and that maybe the first 4 days were her honeymoon period and the setback on day 5 was not necessarily due to the brain bleed. I just wish we had more answers.

caden1206

I am so sorry to hear you so stressed. As a preemie mom I remember Caden going up and down, extubating himself,and even being bagged himself. Those were all scary times. He even needed another round of steroids to get over his respiratory hurdles early on. As an RT I know demands on the ventilator can change by the hour for the good or the bad. When they say the NICU is a rollercoaster they weren't joking. Your little one still has a ways to go before she can support her own respiratory effort and that is expected. I will be praying for you guys and hope you see brighter days soon.

pathfindermon

I'm so sorry you and your lo are going through this. TP to both of you.

Courtneyw04

What you are describing is very common. All of my babies went back and forth like your LO is doing. Our one daughter was on the ventilator for six weeks. I remember the nurses having to bag my kids. It can get very scary.

jcsntms06

Sending my prayers!

Mrs. Alice

I think it sounds pretty normal for her gestational age.  My twins were the vent for 2 and 3 weeks - until 30 and 31 weeks gestational age.  In the first week they were very stable on the vent so the Neo decided to give them each a try on CPAP.  They each only lasted a few hours.  It was horrible to watch them struggle but I knew they just weren't ready yet so they got reintubated.  One ended up having a PDA and once he had a couple doses of Indomethicin, he was able to go back and stay on CPAP.  With his brother, he just needed a little extra time but once he came on CPAP he was off of it and on a high flow cannula in a little over a week. 

I remember this being one of the most difficult and frustrating things in the NICU, Try to trust in her nurses and Dr.'s, as they will let you know if something is abnormal.  As someone else said her settings will change periodically, that is also normal.  My boys were usually on any where from 21%-40%.  Keeping you in my thoughts!

Brummy14

I'm so sorry you're going through this. No experience with the vent, but one of our girls needed three attempts to move from high flow to 1L oxygen. Each time before that, she would hit day 3 or 4, be very lethargic, and start having episodes left and right. Each time they thought she might be getting sick, so she'd end up getting a full work up and the whole nine yards. It was frustrating and scary, but like PPs have said, there are so many days where it feels like three steps backward over and over again.

Hang in there...you're asking all the right questions!

ashk7

I am so sorry you are going through this, I just wanted to say you and your family are in my tp's.

irishdo

I am so sorry.  It is so hard.

My son was born at 24.5 weeks.  His twin sister passed away at 3 days and the dat before his funeral we found out that he had a grade IV bleed on the right side and grade I-II on the left.  We were devastated to say the least.  The doctors were very concerned regarding his future as were we.  And we sat down to have the discussion to make regarding his ventilator tube, meaning if they tried him off the vent and he did not las on cpap, do we want to put the tube back in.  I still cry when I remember that day.  Ultimately we decided that we needed to give hima chance and did not make him comfort care only.  When he was finally extubated just short of 1 month old, he did fine on CPAP so it ended up being a non decision.

Anyway Finn is 2.5 years old now.  He does have cerebral palsy where only his left side is affected.  He walks on tiptoe on the left and uses his laeft hand mostly as a helper although he is using it more every day.  He runs and is about to get kicked out of speech therapy because his language has taken off.  He is awesome and his CP is not really a big deal at this point. 

Unfortunately no one can tell you what the future holds.  No 2 preemies are alike but the brain is a remarkable thing.  I know I searched and searched while Finn was in the NICU for stories of preemies whose story was similar.  If you want the link to our caring bridge page let me know. 

I'll be thinking of you guys. 

 

philfemgal

I have been lurking from PGAL to see if there are updates about Anna.  I'm so sorry that things are going better.  I obviously have no knowledge or advice, but wanted to say that you and Anna are in my thoughts everyday.

jbranden12

Thank you all so much for the support! We are just at the beginning and already I'm impatient for progress. Still learning the preemie ropes!

jbranden12

irishdo:

I am so sorry.  It is so hard.

My son was born at 24.5 weeks.  His twin sister passed away at 3 days and the dat before his funeral we found out that he had a grade IV bleed on the right side and grade I-II on the left.  We were devastated to say the least.  The doctors were very concerned regarding his future as were we.  And we sat down to have the discussion to make regarding his ventilator tube, meaning if they tried him off the vent and he did not las on cpap, do we want to put the tube back in.  I still cry when I remember that day.  Ultimately we decided that we needed to give hima chance and did not make him comfort care only.  When he was finally extubated just short of 1 month old, he did fine on CPAP so it ended up being a non decision.

Anyway Finn is 2.5 years old now.  He does have cerebral palsy where only his left side is affected.  He walks on tiptoe on the left and uses his laeft hand mostly as a helper although he is using it more every day.  He runs and is about to get kicked out of speech therapy because his language has taken off.  He is awesome and his CP is not really a big deal at this point. 

Unfortunately no one can tell you what the future holds.  No 2 preemies are alike but the brain is a remarkable thing.  I know I searched and searched while Finn was in the NICU for stories of preemies whose story was similar.  If you want the link to our caring bridge page let me know. 

I'll be thinking of you guys. 

 

Thank you so much for sharing. While I want her off the vent, I am also scared because we too are being asked whether or not we want to reintubate if she does not do well. The doctors have made it very clear that we have a small window of time when it is our decision to make. We too feel that we have to give our daughter a chance. It breaks our hearts that her big sister Patricia did not get a chance because she was born sleeping, so we don't want to take away Anna's chance when she is doing SO well save for the breathing issue. Even her PDA cleared up on its own, which was good since she couldnt get the medicine to help due to the possibility of aggravating the bleeds.

all the same, we are still constantly questioning our motives and our sanity, for thinking that our daughter will beat all the odds when so far, we have been on the losing end so often. I would love the link to your site. Can you pm me?

thishappyhouse

Those sound like pretty decent vent settings and the fluctuations are very normal.  My daughter was on the vent for 7.5 weeks with 3 failed extubations.  Her vent settings were always moderate but require o2 in the 40-50s unless they upped her pressures significantly.

 Im sorry you are under so much stress.  I'll be praying for you and your sweet Anna 

punky917

I am so sorry that you are going through this. I agree that her vent settings sounded great before she was intubated. I am glad to hear that her PDA cleared up on its own. DS was intubated twice due to catching pneumonia both times. The second time he was on it, I took it pretty hard because just like Anna, it seemed as though he was doing really well. I actually went home from the NICU that night to work on teaching stuff. Before I could go to bed, I received a phone call from the NICU stating that he was back on the vent.

It is heartbreaking and I felt like it was my fault. Unfortunately it is part of the roller coaster NICU parents experience. Keeping Anna in my prayers that she keeps fighting!

DrRx

I'm sorry that you're having to go through this.  My 26-weeker was on a vent for 3 weeks.  She was on it for about a week, pulled her tube out, failed miserably on CPAP, got pneumonia, got progressively worse and maxed out the settings on the vent, then went on the oscillating vent for 2 days along with some steroids.  That seemed to do the trick.  They put her back on the regular vent, she pulled her tube out, tried her on CPAP and this time she didn't fail on it.  That was over a 3 week period, and I never got to hold her the entire time she was on a vent.  I was so excited to do Kangaroo time and hold her the day she went on CPAP.  

I know how scary it is to see your baby be bagged, and that the up and down can be extremely emotionally draining.  We're all here cheering you all on and thinking of you!

cutcopypaste

I know it's been a few days since you posted, so I'm not sure if things have changed but I wanted to chime in. First of all, the vent settings that you posted are actually very good for how young your daughter is! I wouldn't worry about that. Second, the fluctuations are TOTALLY normal. Many, many, many preemies go back and forth on the vent. And it is VERY frustrating. My daughter didn't go back and forth so much on the vent but her settings were always fluctuating on CPAP. One day she needed no oxygen and then the next day she would need 30+ percent. There is no rhyme or reason for it, and it can definitely be very discouraging but hang in there, it's so, so normal.