NICU Check-in 11/15

[penguin129]

I'm going to try and revive this. If  you know anyone who had a NICU stay please tag them. They can currently be in the NICU with their baby or discharged into life after NICU. Either way I think we could all use some support.

Birth weight/current weight:


Gestation at birth/current age:


New skills, milestones, etc:


Ongoing issues:


How are YOU doing?


GTKY: how do you deal ( how have you dealt) with the emotions surrounding having a preemie?

[penguin129]

powerofbacon @sarahwithanh dke2010 peaseblossom55

[penguin129]

I meant this to be a NICU check in in general in or out. I'm so very sorry I put grad in the title. Will edit in a bit.

[penguin129]

Birth weight/current weight: 8 lbs 10 oz/ curretnly 9 lbs and some oz. We had a WIC appt today, but I can't for the life of me remember the oz. They said she averaged a gain of about 2 oz a day since her weight check with her pedi on Thurs of last week

Gestation at birth/current age: She was supposedly exactly 39 weeks when they scheduled my c-section for 10/24 (AG was a c-section after I labored for 14 hours so this time they had to plan it). HL's paperwork from the hospital says her EST GA by Maturity was 38 weeks. She is 3 months old today. I have no idea if you do an adjusted age for a supposedly 39 week at birth baby.

New skills, milestones, etc: She tried to sit up when I set the bottle down for a second. I think she is super strong in that respect.

Ongoing issues: We're not sure, but we suspect HL may have GERD. The home nurse told me to start keeping track of when she spits up as well as all feedings, wet & dirty diapers, etc. I have a great app, but haven't been using it.

How are YOU doing? I'm trying to stay strong. It is hard when I have an almost 3 1/2 yr old to take care of at the same time. There isn't really any time to rest and reset. Add on top of that being separated from AG for 8 days while I was in the hospital for my C/S and then the remaining time with HL and H for 4 1/2 days when he had to take AG home from the Ronald McDonald House because she had HFM and Impetigo. I took a nap the other day with HL in the co-sleeper next to me and panicked when I woke up because H and AG were gone. It turns out they were just in the backyard, but I was so genuinely scared for a second, I started crying. Also AG is a very high spirited 3 1/2 yr old and starting to have a bit of the 3nager sass. I had to give her a time out in the WIC office today. I feel so bad disciplining her because I went from being with her every single day for nearly 3 1/2 years to completely apart from her for 8 days. She was so effected by not being around me and then she was sick too. My IL's watched her the first 4 days, but didn't want to follow her routine and as a result she slept really poorly for them. We are finally now on schedule and I don't want to upset her by disciplining her, but I know it has to be done. *Sorry for the book*

GTKY: how do you deal ( how have you dealt) with the emotions surrounding having a preemie? I don't even know if HL is considered pre-mature. The last thing I expected was to have my baby end up in the NICU during a planned c-section. I'm still trying to wrap my head around it all. Especially since my midwife and doctor promised me HL was crying when they took her out. I knew as a mom I didn't hear it. Then to see 1, 2, then 3 doctors around her little bed thing and have her taken away and H follow her. It was so not the gentle c-section I was promised. I feel like I dont even belong here on this board because she was so big when she was born. I hope it's ok. Anyway, I clean and clean and clean. Then I organize and clean some more. I started going out to AG's normal weekly activities yesterday and I think that helps.

[penguin129]

Nov 15, 2016 15:09:26 GMT -5 @clgsquared said:

penguin129 your baby is considered full term. You don't do adjusted age for a full term baby.
Having a baby go through the NICU is a challenge full term or not

That's what I thought. Thank you for the clarification.

[mandie]

Birth weight/current weight: 4lbs/probably 17 lbs (16lbs at 12)

GA at birth/current age: 33w/14 months/12 adjusted

New skills: she definitely says hi and waves and says yay! And she will lay her head on your shoulder when you ask for a hug. But other than that, she's not great at talking or following directions, which is fine at this age.

Ongoing concerns: she has yet to stand independently and she has been crawling and pulling to stand since 9 months, so the stagnation in progress is a little concerning. Her therapist and doctors are thinking there is some low muscle tone issues. Her year evaluation for EI is next week, so we will see.

How are you doing? It goes along with how do I deal. Her birthday was hard, but a year + out, I have a lot less bitterness and more thankfulness. My friend and I are spearheading a March of Dimes initiative to provide more support to other preemie parents, so that has been helpful.

[sahara78]

Birth weight/current weight: 2 lbs/31 lbs

Gestation at birth/current age: 29w2d/ 4y5m

New skills, milestones, etc: DD is in preschool. She loves going, and she knows all her letters, sounds, and numbers. She started ballet classes a few months ago.

Ongoing issues: DD is very tentative physically. She's often scared to walk on the bridge at the playground or to jump down a step. I think it is related to her hypotonia, but not sure if it's worth going back to PT. This is part of the reason I signed her up for dance; the other reason is she wanted to because Sofia the First does ballet! I worry that DD's Pre-K teacher will recommend she be held back due to being socially immature. DH thinks I'm nuts.

How are YOU doing? Doing pretty good.

GTKY: how do you deal ( how have you dealt) with the emotions surrounding having a preemie? The Dump Preemie board was helpful when we were dealing with suspected NEC & moving NICUs. When DD was in her first NICU, there was an active family support network. I went to their meetings regularly; it was nice to see other people in similar situations. After we moved her to Duke, the support group was less active. Since I was commuting, that time was just more surviving. Our older dog got cancer when DD was in the NICU, and we put him to sleep two days after she came home. We adopted a dog when DD was ~7 months, because we wanted some fun in our house again. It's worked out, but not sure if I recommend that as a way to cope!

[peaseblossom55]

Birth weight/current weight: 2lbs 4oz/2lbs 13oz


Gestation at birth/current age: 29 weeks 3 days/3 weeks


New skills, milestones, etc: She is doing well gaining weight and last night they took her off CPAP and put on her on a nasal canula.


Ongoing issues: None so far


How are YOU doing? NICU is an hour away. I went back to work today and I feel bad but I want to save my maternity leave for when she is home. I feel guilty for not being there with her every day, like it will hinder her development or her connection to us.


GTKY: how do you deal ( how have you dealt) with the emotions surrounding having a preemie? I am just trying to take it day by day. At this point I am so grateful & happy to have a living child.

Thank you penguin129 for starting this.

[taconight]

Birth weight/current weight:
 3lbs 9 oz / 39 lbs




Gestation at birth/current age:
 30w4d/5 years




New skills, milestones, etc:
 Started kindergarten this year!



Ongoing issues:
 None




How are YOU doing?
 Very well.




GTKY: how do you deal ( how have you dealt) with the emotions surrounding having a preemie? I was in a not so great place for a while dealing with the NICU and a really rough first year with baby's health. It was a scary time, and I was resentful that other people had it so much easier. I was a regular poster on the Preemie board back then, on the other site, and it really helped me talk to the moms of the kids who were older and had come out the other side. I guess that's why I have come here now; if I can help someone in the thick of it like those moms helped me, then that would be nice.

[motownthrowdown]

peaseblossom55, I know it's hard, but don't beat yourself up for not being there 24/7. I had to go back about 2 weeks after my c section, and it was torture, but I was happy to save the time for when I needed it later. If you don't have primary nurses, pick some out. It makes it so much easier to call and check in when you feel like you are calling a friend.

[motownthrowdown]

Thanks for the tag @clgsquared!

Birth weight/current weight: 1 pound 14 ounces, currently around 20 pounds

Gestational/current age: born at 28 weeks 0 days, currently 18 months chronological, 15 months adjusted.

New skills: walking like a champ! She started the day after she turned 12 months adjusted lol. She's eating "people food" and was moved to the stable walker room in daycare.

Ongoing issues: she gets physical therapy once a week to make sure she's on track. We are just coming out of orthotics for some hypertonia in her feet (standing on toes). But we are going into speech therapy for an assessment because she isn't talking. She says mama, dada, and baby, but not with any real context. We are also gearing up for her next MRI and neurosurgery evaluation in a couple of weeks to monitor her hydrocephalus.

How am I doing? I'm working on the internalized rage issues I have with impatient mothers to be. I missed out on the entire third trimester, so it's hard for me to be sympathetic to women who bitch and moan about how sick they are of being pregnant. I'm still in therapy and still on lexapro. My PTSD has gotten far more under control than this time last year.

GTKY: dealing with a preemie: I was very much in survival mode. First, we had to make it through her birth. Then, it was getting through the nicu. Then it was getting through her hydrocephalus diagnosis and surgeries. Then it was keeping her alive at home without the nurses and machines. Then it was more surgeries. Then it was cold flu and rsv season. I feel like I am just now coming out of the fallout shelter in my head.

[peaseblossom55]

Nov 16, 2016 18:53:13 GMT -5 motownthrowdown said:

peaseblossom55 , I know it's hard, but don't beat yourself up for not being there 24/7. I had to go back about 2 weeks after my c section, and it was torture, but I was happy to save the time for when I needed it later. If you don't have primary nurses, pick some out. It makes it so much easier to call and check in when you feel like you are calling a friend.

Thank you so much! We call in every night to ask how she is doing, they rotate through nurses but it's usually a few of the same nurses.  It can be hard not to feel guilty or feel we are not doing everything we can to help her thrive right now.

[penguin129]

peaseblossom55 You are doing a great job! I second what motownthrowdown said.

[sahara78]

peaseblossom55, if another anecdote helps, I also went back to work while DD was in the NICU. I worried about our bond, or her developing attachment issues due to painful procedures, but she is normally attached to DH & I. I was happy to have the extra weeks at home once she was discharged. I will say I was super unproductive at work during that period, though.

[peaseblossom55]

Nov 17, 2016 9:19:42 GMT -5 sahara78 said:

peaseblossom55 , if another anecdote helps, I also went back to work while DD was in the NICU. I worried about our bond, or her developing attachment issues due to painful procedures, but she is normally attached to DH & I. I was happy to have the extra weeks at home once she was discharged. I will say I was super unproductive at work during that period, though.

Thank you so much. I still worry of course but if anything being back at work makes the time go by faster.

[motownthrowdown]

powerofbacon I came back to read updates and was scrolling through your Gtky thinking it was mine! Survival mode is good, it means you are still functioning. We did feeds on a 4 hour schedule all day and night until she was 6 months adjusted. It sucked, but preemie brains crave sleep above all else. Hugs for solidarity.

[penguin129]

So many hugs to you ladies. I'm happy there is a place like this board to show support and vent.

[mandie]

powerofbacon hugs. It sounds like you have been through so much. You are doing a beautiful job.

My daughter was only in the nicu for 3 weeks, and I probably would have gone back to work the following Monday after having her to save time when she was home. But i only got disability pay for 5 weeks at 60%. So, if I went back to work right away, I would have had to take my 12 weeks unpaid, since I couldn't claim disability once I went back to work. Since her stay as short, it wasn't a huge deal. But it just really sucks that companies and laws in the US haven't caught up to the rest of the developed world.

[sahara78]

powerofbacon,sorry that things are hard now.

My mother behaved horribly when DD was in the NICU, which wasn't entirely out of character for her. I still feel resentful about it if I think about it too much, like why can't she just be supportive, you know? All that to say, I understand dealing with your ILs is difficult when you have your focus on your DD. Hope things start to get easier soon!

[minae01]

Birth weight/current weight: 4 lbs 6 oz/31 lbs


Gestation at birth/current age: 32w3d/Just turned 4


New skills, milestones, etc: He started preschool this year and I was so nervous. He's very sensitive and shy, but it's been a great experience for all so far! He can write his name and many letters. He is very loving toward his baby sister (his brother, not so much).


Ongoing issues: He definitely has some quirks, but nothing major at this point. He's small but he's always been small.


How are YOU doing? Obviously, I'm pretty far removed from NICU life. I'm doing very well now. I did have a very tough time with it all the first year or so. I was so jealous of women who had easy, full term pregnancies. I worried about my kid's weight and development all the time. It was very stressful. TD preemie board was so helpful in validating my feelings and concerns.

18 months after DS1's birth, I had DS2 at 36 weeks, and although he was a late term preemie, I hag a very healing experience. I had the p17 shots, I got steroid shots at 32 weeks, and he was very healthy. I got to go right home with him. That helped with all the pain, jealousy, and resentment I had with DS1's sudden, traumatic arrival.

DD was born this past March at 37 weeks and the experience was good, even though we had to stay an extra day for jaundice. They had us stay in pediatrics instead of NICU because it was full - thank goodness. I think that would've been rough emotionally to have a baby back there.

I think the biggest thing I struggle with now is being done with having kids. I cannot go through another high risk pregnancy with all the shots and extra monitoring. It's sad because I love being pregnant and having little babies. The fact that my body doesn't like to keep them in for the full 40 weeks sucks. I'm still a bit jealous of women with carefree pregnancies.


GTKY: how do you deal ( how have you dealt) with the emotions surrounding having a preemie? I talked about this above, but talking to other preemie moms helped, as did ultimately having another baby. That's not an option for many woman in the position I was in. If i couldn't have any more kids, I would've definitely needed therapy to work through the anger and jealousy. My girlfriend just had a 28 weeker at the same hospital/NICU as DS1 and it brought back so many feels being there. I'm glad that through my experience, I was able to offer her extra support, but it was tough reliving that time of my life.

peaseblossom55, please try to let go of that mom guilt about going back to work. Your baby is in such good hands and will never ever remember that you weren't there 24/7. In the grand scheme of things, this really is a short time in her life. It'll be more important that you are there for her when she comes home. Until then, you need to provide for her, and that's ok! I've been following your story on GKU, and I think that you are such a strong, amazing woman. You are a true inspiration to moms everywhere!