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Preemies
NICU Mom Check in
For those of you still in the NICU, how are things going this week? Joys? Stress? Things you wish you had more support for?
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Re: NICU Mom Check in
great day week so far, Lil Manny may be moving to the step down unit in a few days. Also he moved on to wearing clothes this week and he keeps growing more and more every day
11.2011 - DS1
02.2013 - loss at 6 wks
06.2014 - DS2
10.2015 - loss at 12 wks
03.2017 - DD
Ryan had his shunt put in on Monday. He is back on full feeds and CPAP, and they even weaned his rate as of this morning. The shunt seems to have helped him already, bringing his HR and BP down to a normal level (he was always elevated). He is almost 5 lbs now!
Aiden is gearing up to get his shunt put in next week. They tapped him on Monday to get some of the SF out and he is already having less apnic episodes. He is still on nasal IMV, but his O2 level is almost room air. He is about a lb smaller than his brother.
Joys: I feel like the worst is behind us.
Stress: One of Ryan's roommates passed away on Monday. I can't help but think things can go downhill at any moment.
I'd like bottle feedings to be started already. The boys are almost 36 weeks GA and no one has even mentioned bottle feedings yet.
This is our second week in the NICU and we are still adjusting to life as NICU parents. It has been an emotional, stressful week and we are exhausted.
Joys: Caroline seems to be thriving at the moment. She is only having 1-2 bradys (or none!) a day, and for the past three days we have increased feeds and decreased O2 which means we are moving in the right direction! She was weaned from the CPAP to a high-flow nasal cannula and it was sooo nice to see her beautiful face without all that machinery!
Stress: Uh, everything. LOL. Just life in general is stressful. Money, work, school, holidays, plus the fact that every night we have to walk out of there and leave our sweet girl behind. It breaks my heart every single time. Also, Caroline was diagnosed with a Grade II IVH on the right. That was a very stressful, emotional day.
Hi ladies! I hope you don't mind that I am jumping into your post. Glad that your LOs are all having good weeks.
Just wanted to comment on this - my son didn't start bottle feeding until about 35 weeks. For him, it was closely tied in with the breathing. He had to be down to a certain flow (maybe below 2?) on the nasal canula before they would try it. I believe they said it was unsafe at a higher flow. So, that is probably why no one has mentioned it.
That being said, it was around this time that I requested a care conference with his primary doctors, nurses, social worker, etc. to talk about "the plan" to get him home. It was helpful to talk about the specifics of DS's situation, and what exactly had to happen for him to be released. It was after this meeting that they started to be more aggressive about his oxygen weaning, and shortly afterwards we got to start bottle feeding. I'm sure you are in close contact with their doctors, espeically with the shunt surgeries, but I would specificially ask their plan to get them feeding, and essentially how to get them home. Good luck - I know its been a long road and I remember how tired I was at this point. Hang in there!
I spoke to soon. She had an ultrasound today for her brain, spine and kidneys. Still showing the brain bleeds not sure about any damage from the infarcts she had. Petrified to know if she is going to have any long-term brain damage. There was a different neonataologist in today and while the other one seemed more aggressive about her coming home, this one thought it would be a much longer road. He is also bringing in a pediatric opthomologist to have her retinas checked as well.
I would be lying if I said today things didn't really start to get me and I broke down and bawled in the NICU family waiting area. Sigh.
Thank you for chiming in. This makes total sense - and we were actually contacted by the social worker yesterday for a family conference including the doctor and social workers. I wonder if this is the type of meeting they wanted to have.
Both boys are still on CPAP so I guess they can't start bottles until nasal cannula.
Today has been a great day! The only time he desated today was when the prongs were out of his nose. And it was not durning the photo shoot that we had ( i was not able to be at the one for the March of Dimes 2 weeks ago). Plus I was able to Kanagroo him as well today, and still doing good!!
Joys: He is getting stronger every day!
Stress: There is a RSV outbreak on the floor, NICU 2, NICU 3, L & D, plus newborn!
I might bring it up. We brought that problem up to the Neos and it was because of the way the chart was worded the nurses had the option so they would take the easy way out. Instead of writing "on cue" (meaning individual decision of if the baby is cueing or not), they changed it to read differently where the nurse had to spend a certain amount of time trying and had to chart exactly what she did to try if she ended up using gavage. Seemed to help some!! We also enlisted the aide of a couple of our favorite nurses to keep an eye out for them and to try and get them as their charges when possible so I wouldn't have to worry during those shifts