Are there any other micro preemie mom's out there? My son is a 25 weeker and we are over 11 weeks into our NICU stay. It's starting to feel like a reeaaally long time and I think we might be there past his due date. I thought things were improving but we can't seem to wean from his oxygen support and breast/bottle feedings aren't going exactly great either. I'm exhausted.
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I'm not sure if @Mrs. Green Grass is still out there but I believe her son was a 25 weeker. Hopefully, she sees this!
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Along with @Mrs. Green Grass, @Mrs. 64 is one. I'm not sure if she's still around, but you could try walling her!
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Not a preemie mama, but just wanted to offer some support. I can't even imagine how exhausting that must be. Is this your first?
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@tiramisu: sorry to hear you are going through this. Do the doctors have any positive news about when your LO can leave the NICU
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Yeah, I know @Mrs.Green Grass's son was a 25 weeker. I didn't have micro-preemies but I had preemies that were born at 34 weeks.
Are you on facebook? I joined my local preemie group and that helped in the beginning when they were in the nicu.
I know before my twins were born the dr said to expect that they would be in the nicu until their due date. It was all very scary to think about. Hoping our LO's nicu stay is as short as possible. Thinking of you.
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I'm not a micro preemie mama, my son was born at 34w but I wanted to offer you some support. I know that it is so hard and it feels never ending, and you must be exhausted. Hang in there, I'm thinking of you!
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@tiramisu: So I found this response from Mrs. Green Grass. It looks like her 25 weeker was in the nicu for 143 days. Last I heard from her, her 25 weeker (now 3 years old) was/ is doing well.
http://boards.hellobee.com/topic/babies-in-the-nicu-birth-weight-vs-weight-at-discharge#post-2270345
Hang in there. I don't have any experience with micro-preemies but I do have experience in the nicu for 15 days. I know... not the same. I do remember the roller coaster of the nicu. Some days were good and some days there was a set back.
For me, I got a nicu journal to help me stay focused on something. (I'm not a journaling type of person but focusing on the stats kept me together.)
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@MrsKoala: @LBee: Thank you! Maybe I'll wall Mrs. 64 too. It's kind of ironic, Mrs. Green Grass son and mine were born at almost the same gestational age and weight.
@JenGirl: Thanks for the kind thoughts. He is my 2nd. I have a 2yr old daughter but she was born full term and healthy so it's my first NICU experience.
@Mrsbells: Initially the docs said around his due date, but if he doesn't start eating better and breathing on his own it could be longer. Thankfully he hasn't had other major health issues so I am definitely grateful for that.
@bluestriped bee: Thank you for the tips and linking that post for me. That must have been scary for you with the twins and I'm glad they had a relatively short NICU stay. Great job keeping them baking for 34 weeks! I see lots of twins in our NICU born alot earlier. I'm not really active on Facebook but I'll try see if we have anything local here.
@psw27: Thank you!
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Just wanted to send you some love. Mine was 36 weeks with a 10 day stay, so I can't possibly understand what you're dealing with, but the NICU experience is overwhelming and anything you can do to take care of yourself is so important, as hard as it is. Thinking of you!
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@tiramisu: Oh, I got a nicu calendar, too. Some of the milestones in the nicu is different from a full term baby. I wanted to cherish (?) or remember my time in the nicu so the nicu calendar and their specific nicu milestones helped me look forward to the next step.
http://www.preemiestore.com/NICU-Dayz-Milestone-Calendar_p_429.html
Oh, this site is where I got the nicu journal, too. You can buy micro preemie clothes on that site. If your hospital has clothes, it is suggested to wait to buy clothes until your baby is discharged.
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@tiramisu: No personal experience but my cousin had a 24 weeker. He was 1lb 8oz when he was born in October 2011 and didn't go home until January 2012, close to his due date. Andrew is now a giant almost 5 year old
My cousin is a public speaker and has talked to lots of NICU moms, she's not on HB but if you'd like to get in touch via Facebook let me know? I know she'd be happy to chat with you. -
My son wasn't a preemie but we had an extended NICU stay due to some health issues. I just wanted to send love and hugs! It is so hard!
Is the hospital near your home? Do you have support, family or friends, nearby? I hope your little guy continues to improve and can go home soon. Big hugs, mama!
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I think we talked right when the NICU stay began, but the end is the worst! Did you get a chance to read his blog? For us feeding was the main issue and we ended up staying 5 weeks after his due date. It was so hard to know he was basically ok, but still have him stuck there and every day's mood was based on how well he fed. Check out the Dylan's blog around Jan/Feb. I had other preemie mom friends during his stay and they kept getting released and it was hard to deal with. I liked to justify that if he got him before he due date, it was an extra special preemie thing, but then it came and went. Are you able to go outside at all? Prob not if still on O2. I also am a member of an MP group in FB although not many are currently in NICU and I also found the babycenter MP group to be pretty supportive. Please contact me anytime...
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@tiramisu: I'm sorry you're going through this! I didn't have a micro preemie, just a normal one (34 weeks). He was also our second and it's so hard when you have an older child to care for as well. Big hugs and hang in there!
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@tiramisu: Just wanted to say hugs!
My first wasn't a micro preemie, but she was a 30-weeker and we were in NICU for 57 days. I totally get the feeling of how it's never going to end....Prayers and happy thoughts to your sweet baby.
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@Mrs. Carrot: Thank you!
@bluestriped bee: Ooh that calendar is cute! I got a small one from March of Dimes but that one on that site is way cuter!
@rachiecakes: Thank you! I'll let you know if I need someone to talk to. That's fantastic that your cousins son is doing well!
@jhd: That must have been scary for you to be in the NICU with a term baby. Thank you for the support. We are fortunate that our family and friends all live nearby and the hospital is only about 20 minutes from our home.
@sunny: Thank you! Even having a "normal preemie" is scary. I wish everyone would have nice healthy term babies. And yes having an older child does make it extra challenging. Taking care of my toddler and being at the NICU is definitely taking its toll on me.
@Ginabean3:
Thank you! 57 days is a long time and must have been very overwhelming as a first time mom. I am totally at that point that it feels endless. The nurses try to remind me how far he's come.
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@Mrs Green Grass: Hi! Yes I was thinking of emailing you but I didn't want to bring you back down NICU memory lane. I'm so glad your D is long out of the NICU. I have been reading his blog and about his struggles with feeds. I know you guys were on and off O2 also. My D is still dealing with some desats and bradys so we're back on high flow 2L. He never seems to get his sats in the upper 90s. I totally am at that point where Im seeing everyone else get discharged or even moved to less critical care in the NICU. But not us. It is frustrating. His due date is coming up in a few weeks and we are only on 2 bottle/breast feeds per day.
I don't think our NICU allows babies outside until their discharged.
It would be nice to get some fresh air.
I also have a 2yr old daughter and I think I'm so exhausted I haven't been very patient with her lately. -
@tiramisu: Glad to hear you have friends and family close and that the hospital isn't far. I remember feeling like we would never get to leave, and even our target day to leave seemed impossible even just a few days before, but all of a sudden LO did what he needed to (eat!) and we got to leave. I'm thinking of you and your family and hope it won't be too much longer for you!!
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@tiramisu: I've been wondering how you are
this sounds so tough, lady. all my fingers crossed for your little baby picking up steam quickly. hang in there. xx
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@tiramisu: you can email me anytime! It's easy to look back now that everything is good. Did you give steroids to LO? That was a huge turning point for us. But we never made it out of the level 2 area at the NICU. We were never with the "feeder/growers."
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Ours was a 30 weeker, not a micropreemie, but sending you good thoughts anyway!
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@LCTBQE: Hi! Thank you dear. I definitely hope he turns a corner soon because i am getting so antsy to have him home. How are you feeling? I know that last month seems to take forever. Hope you're not too uncomfortable. So excited for you tho!
@Mrs Green Grass: Thank you so much. I know you totally get what we're going through. I had one round of 2 steroid shots a few days before D was born. Did they give your D steroids after birth? Maybe I'll ask them about that. I remember the docs telling me I'd get a second round of shots a little later but I ended up delivering the next day. I do feel like his lungs just aren't fully developed. They even did a heart echo the other day to see if he had pulmonary hypertension that's causing his respiratory problems but it looked fine. I also feel like his reflux is causing some of the brady/desats but they don't want to give him medicine just yet.
@MrsSRS: Thank you!!
I hope you didn't have too long of a NICU stay. 30 weeks is pretty early too.
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@tiramisu: 4 weeks in the NICU and 4 weeks at home with a heart/respiratory monitor. But I had time for 2 doses of lung steroids before DS came and he was big (almost 4lbs) because DH is a big dude, which helps with some things. I wish I had pushed for reflux meds earlier. Most of DSs bradys were reflux.
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@MrsSRS: That must have been a long 4 weeks in the NICU. That's great you were able to get the 2 doses of steroids and that your DS was a good size at birth. A bigger preemie is definitely better! That's a great point you make about reflux meds. Sometimes I feel awkward asserting myself to the doctors but I really feel like my son has silent reflux or something going on. I think I'll mention the meds again today when I head over to the NICU.
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@tiramisu: and you're 11 weeks in!! Super moml
Is the hospital near your home? Do you have support, family or friends, nearby? I hope your little guy continues to improve and can go home soon. Big hugs, mama!
It would be nice to get some fresh air.Reply
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