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Preemies
So scared for our little girl...
Last night Addison started to have a bad night. For some reason she kept wanting to turn her head and at one point when she did, not only did she bend her ET it she cause herself to vomit. The NP decided to try her on a nebulizer treatment which seemed to help a little and they also gave her some Sweet Ease to try and calm her. Meanwhile she was having so many destats that I refused to leave despite how late it was getting. It took them a good two hours to settle her down. They did a chest xray which looked better then the one earlier in the day but still wasn't fabulous and actually shows her lungs being "sicker". So it really looks like she will be getting steroids after all and they are even talking about putting her back on the Oscillator AGAIN for the third time.
The NEO keeps pushing for me to do Kangaroo care but the nursing staff keeps refusing to allow it with her, but yet they let me with her brother even while he is intibated. The NEO even documented her chart saying she needs Kanagroo care. His hope is that she will learn that not every touch is a "bad" thing , like blood draws etc. Know I can't even really touch her if she goes back on the other vent, so its even more frustrating not being able to hold her now and fearing it will be even longer before that happens. We dont even know how she will respond and for all we know it maybe the tender touch she needs to know we are there with her. Ita also pretty convincing when she fights to see what's you going one when I hold her brother and she also gets very figgety then too, which I feel like is her way of tell me she wants to be held too. I mean how sad it is that I have only held her one time since she was born.
In other news, while the NP was evaluating Addison, Blake decided to pull his ET tube out. And his nurse completely freaked out and froze. Four other nurses jumped in and the NP had to take over. Thankfully Respiratory was making rounds and happened to be near his bedside, so they were able to smoothly transition him to CPAP, two days earlier then planned but he is tolerating it well. I will be requesting that his nurse from last night be not allowed to work with my little ones again because in my opinion she did not react like she should have. The NP had to tell her to bag him until they got his CPAP set up and ended up having to it herself.
We finally made it home around one am, and poor DH had to be up for work at six, but too me it was well worth staying. Even DH said it was like I knew something was about to happen.
TTC #1 since 4/2007...
MFI (low motility/low Testosterone) & PCOS
IVF #1 August 2010...BFP
1st sono shows TWINS!!!!
Due May 23rd 2011
Ruptured @ 21 weeks (Jan 13)
Delivered 26 weekers (Blake and Addison) on Valentine's Day...
Keeping faith and praying, God has a plan and we just have to learn to follow.
Our Blog ... ourvalentinesdaysurprise.blogspot.com
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Re: So scared for our little girl...
Wow, what a rough night! Have you mentioned to the neo that the nurses won't let you Kangaroo with Addison? As for the Oscillator - Kevin was on the Jet and then an Oscillator for the first 21 days. They tried him on a conventional vent at one point and he quickly failed back to the Oscillator - depressing for the moment but four days later he finally graduated to conventional - I hope the same holds for Addison.
And good all on your part for listening to your instincts and staying late last night!
ETA - and we didn't hold Kevin until 24 days. We would even stop holding him during especially rough weeks for him. He hated Kangaroo and really couldn't handle being held at certain points - the week he was on CPAP was especially rough for him. He's been on high flow for the past 3 weeks and loves being held.
My point? It sucked being told not to hold or touch our baby but I think it really was the best thing for him - enough so that I issued the "He's not to be held while on CPAP" order myself. But my baby is really a one thing at a time boy - he's just not a multitasker.
First, I am really sorry. I remember when Scarlette was on/off the oscillator was definitely the scariest time for me.
Second- talk to your NEO about the nurses not letting you hold. Scarlette was over a month old before I was allowed to hold her for the first time.
I will never forget the day my NEO walked in and said "Mommy holds today" and the nurse tried to tell him that it was tough w/the ventilator and he said "No, today Mommy holds her baby. Get it all ready" He made sure it happened and I am forever grateful to him for that.
Honestly? I thought holding on the ventilator was easier than holding with the CPAP.
Oh mamma- what a rough night. Ditto everyone else about talking with the NEO about wanting to Kangaroo despite what the nurses say. I honestly believe that nurturing touch is one of the most important things in their development, so keep pushing for it. Even if she only tolerates it for a short time, I think it's important for her to tie your touch and voice together and know that you're looking out for her.
Good thoughts for your LOs. I'm glad you went with your gut instincts and stuck around last night- your DH is right, moms just know when their LOs are not 100%.
I'm so sorry that you have all this going on! As PPs said, I would speak to the neo about the fact that the nurses are not letting you kangaroo Addison. If you feel that it is something that she needs, you should definitely push for it. I will say, though, if it will give you peace of mind, I hardly ever did kangaroo care with my LOs. I didn't enjoy it all for some reason, and they didn't seem to prefer it to anything else, so I rarely did. Once they were bigger I held them in my arms all the time, but kangaroo care was not a big part of our protocol and it didn't seem to affect them.
My DD Lauren was on the oscillator as well. It was awful not holding her, but I am also a NICU nurse, and I just didn't feel it was best for her. She was so, so sick.
So, in the defense of the NICU nurses.... sometimes babies are soooo touchy and can get overstimulated very easily. My DD would drop her sats into the 50s and 60s if someone was emptying the trash cans in her room--- or even talking in the room.
Yet, as a mother, I can tell you that Kangaroo care is awesome for the babies. I would try to stay so quiet and calm, baby and I ended up falling asleep in that recliner. They could actually wean (turn down) her vent settings when I held her.
You are mom, so use your judgement. YOU know best. Just follow your babys cues, and I wish you the best....and for you NICU stay to go smoothly for you. Take care.
I'm sorry it's been such a rough road for little A. I hope she doesn't have to go back on the oscilator AND that you can finally kangaroo her soon. I didn't hold Andrew for five weeks (until he was on CPAP), so I know how excruciating it is. I would be annoyed about the nurses not following the orders either - are they just saying she is not stable enough? Would it be possible to get the Neo and nurse in the same place for the discussion? Maybe it is time for a family meeting so that everyone is on the same page about her care and treatment. We had a few of those where were got the Neo, primary nurses, and social worker all together in a conference room (so no bedside distractions) and just talked through our worries and Andrew's condition. I always felt so much better afterwards, and that's usually when positive things happened soon after.
I feel for you, b/c it seems like you are having a rough time with the nurses. We were very lucky to find several primary nurses who were just wonderful, and that makes such a huge, huge difference for me and my sanity. Hang in there, keep advocating for your LO, and I'm going to keep cheering for them from the sidelines.
Oh man, my heart soooo goes out to you right now. As others have said, holding your baby is so very important for her AND you.
I remember after Annabelle was born feeling like she belonged to the NICU staff instead of to me. They took care of her, were constantly with her, seemed to know what she needed better than I did. I think a lot of NICU Mommies feel that way. But it's important to remember that YOU know your baby better than anyone and if you think being held would benefit her, you're probably right (especially if the NEO is on your side).
I remember a couple instances for us early on when my gut was telling me something was wrong with Annie but the nurses dismissed me. Later, it turned out my gut was right and the nurses were wrong.
One last thing-- luckily, I was able to do kangaroo care with Annie almost immediately and I remember being very worried about it (she had a lot of brain trauma at the time and was on the vent) but her doctor stressed to me how vital it was to hold her and how that could only help, not hurt.
Good luck and hang in there. Lots of T&P.