Our little miracle baby, Matilda Jane, was born by emergency C-section last week at 32 weeks, 1 day after a very complicated pregnancy. We are absolutely in love and so overjoyed to finally meet her It is a very long story, but Matilda had heart issues that required her to be delivered early. Mom also had some sudden health issues (I have an extremely large DVT and pulmonary embolism) so it was a pretty scary time for all of us. Her delivery was extremely traumatic and we almost lost her - she is truly a miracle and a real fighter!
I am hoping that other preemie and NICU moms can share their advice and tips - how did you cope during this terrifying and overwhelming time? I would also love to hear about any must-have preemie/NICU items. I already bought a hands-free pumping bra and it is awesome! We definitely weren't ready for Mattie's arrival and still have to buy pretty much everything so any recommendations for things that were helpful at home are very welcome too!
My husband has been amazing - he hasn't left her side since she was born. I was in the hospital for six days after her birth and was discharged last night. He was present for her very scary resuscitation and is so terrified (I was still waking up from surgery). I know we are coping the best we can right now (and I can't believe what a truly amazing daddy he is!), but would love to hear how you and your partner coped and supported each other. I am still pretty sick so I have had to leave so much up to him and that has been hard for me not to be there all the time.
Thank you so much everyone! I really appreciate your help and advice
hostess / wonderful apple seed / 16729 posts
Oh, wow. So scary. Thinking of you, the mother and the baby. Sorry, I can't tell from how the post is written if you are the mother or if you are a friend or family member.
I had 34 week old twins born in September. I was on hospital bed rest for 6 weeks so I had quite some time to prepare for my preemies/ nicu stay.
For me, what kept me sane was to keep a nicu journal and preemie calendar. Some hospitals give out a Nicu journal. I bought mine from http://www.preemiestore.com
They also have a preemie calendar that I love and got many compliments on it while I was in the nicu. The calendar had different milestones that are different from full term babies. I like that they had a few versions for twins. So it was perfect.
pomelo / 5607 posts
I'm so sorry you're going through such a scary time, but I'm so glad she's a fighter! I think the biggest thing for me was, if you have family/friends nearby who want to help, let them! Especially with food. It's hard to eat well when you're dealing with the nicu, so let people feed you.
I don't have experience with the scary parts- thankfully my LO was very healthy for a preemie. I can't imagine how terrifying it must be, especially for your husband seeing her resuscitated. You might see if the hospital has any resources to help. Also, there was a thread recently (about world prematurity day I think?) that had then and now pictures of some of the nicu LO's here on HB. That might be encouraging for you? One mama is still in the middle of it too, so if you were to reach out to her the two of you might find some support in each other, since most of us are already out of the thick of it.
I hope you get back to 100% yourself ASAP, and that your LO gets to full health too! Hugs! Keep us updated, and congratulations!
cherry / 220 posts
Although I congratulated you on the January boards, I will say it again, congrats and welcome to baby Matilda!
I had a 33 weeker who is almost 3 now, he was 4 lbs 4oz. I know it was really tough on my husband as he received no paternity leave and very little vacation time, which he opted to use once my little guy was released. I was discharged after two days and cried the entire way home (about an hour) since leaving the hospital without your baby is just about the worst feeling in the world. I was at the NICU every day doing kangaroo care, being at his rounds with the Neonatologist , reading to him, etc. I would send my husband videos and photos through the day. He would visit a couple of time during the week and both days on the weekends. Really, I just tried to be as involved with his care as possible to give me a sense of normalcy in an abnormal and unexpected situation, I changed diapers, dressed him, fed him when he was off the feeding tube and eventually got to give him his first bath.
We were also not prepared for his early arrival and had to buy everything. Definitely ask your nurses what they recommend as far as bottles/feeding goes. I pumped as well but had to add high calorie formula to the breast milk to help him put on weight, so straight from the source did not work until he was a few months old and we cold ween off the formula. As far as what I found useful at the NICU was the boppy, even when just holding him and not feeding, it made things more comfortable as the hospital chairs weren't really.
I am going to second what @Torchwood said about food. If people are willing to bring you food, let them. It one less thing to think about and oh-so-helpful.
Lots of positive thoughts going your way.
persimmon / 1483 posts
@lauren0817: congrats on your daughter!!
We just completed a 4 week stay in the NICU after my daughter was born at 34 weeks. It is very hard, no doubt, but for me, getting into the grove of a routine, doing all of her care (taking temps, changing dipes and clothes and feeding once she was ready) getting to know the NICU staff really helped. I tried to make sure that I was there for rounds everyday and if I missed it, I tracked down her doctors for an update. Also, I asked a ton of questions so that I understood exactly what the doctors were talking about and could particulate in the conversation about her treatment plan in meaningful way...there were a million medical terms and acronyms being throw out all be time and if you don't ask for them to break it down, it feels very overwhelming and like things are just happening to your child without any input from you. I also called the NICU at all hours of the night to speak to the nurses and get an update on my LO. When appropriate, I also brought stuff from home (swaddled blblets and binkies) so it didn't feel so sterile.
The NICU is a roller coaster, so maybe the most important thing you can do is be kind to yourself. It won't last forever, even though it feels that way. Finally, try not to rage at everyone who tells you to enjoy sleeping at night while you can. They mean well, but have no idea what you're going through.
nectarine / 2031 posts
@lauren0817: congratulations on your little fighter and I hope your recovery is fast! I had twins at 30 weeks. I had a very hard time emotionally at first because I had to leave my babies but when you feel well enough our NICU had a march of dimes do family night where you meet other parents with babies in the NICU it helped me to IRL talk to someone going through what we were going through, maybe your hospital has something like that. Also Since your husband is with Matilda a lot right now if he likes the way certain nurses are with her ask them to be her primary. That way there is some continuity and whenever that nurse works she will be her nurse. My LOs had a night primary and a day primary and it was nice to come in and not wonder about what nurse is there and if the are going to make me feel like I am in the way or I can actually be a parent and participate with my kids. You should be able to do diaper,temp and we were able to hold while they were feeding through the ng tube l. Lots of Kangaroo care. I was there all morning while my husband was at work then went hope did dinner with our 18 month old and when he went to bed my and dh went to hospital at night so he can spend time with them.
They will even let you put pictures that are laminated of you and your so in the incubator so they could see your faces. And yes like pps said let people feed you!
I hope this post makes sense because I am doing this all on my phone. So sorry if some doesnt make sense.
pomelo / 5628 posts
If you want greater support, look up a good preemie mom friend of mine who also happens to be a psychologist. We met when our preemies were born within weeks of eachother (24 weeks for her, 25 weeks for me). She exclusively works with mom now, especially those on bedrest and NICU/NICU graduates. Her name is Parijat Deshpande. And there are a lot of threads if you look on the NICU board.
apricot / 369 posts
Thank you so much everyone - I am just reading through everyone's responses and am so appreciative I'm going to read through again tomorrow when I have (slightly) more brain power, but I just wanted to send thank you for your kind words and advice.
grapefruit / 4712 posts
@lauren0817: E was born at 35 weeks (so late term preemie). He was born unable to breath properly and had to be bagged from the start until they whisked him off to NICU where he was placed on CPAP. While on CPAP he is ended up with a large hole in his left lung and had to be switched to an oxygen good for 24 hours. After all of that he was on nasal oxygen for 10 days. He was also on TPN and lipids to start then moved to NG/OG tube for feeding. We got lucky and he was able to come home after 13 days without any wires and tubes.
Things I found helpful while in NICU:
- yummy and healthy snacks to keep up in my bag so I could eat on my way up.
- a very nice water bottle that I was happy to look at.
- cute zip up hoodie to keep warm when pumping and when we did skin to skin.
-I journaled here on Hellobee about his stay
- I made sure I was always present for rounds with doctors so I could be part of the discussion
- I had the nurses show me everything that I could myself so he felt more like mine.
- I made friends with my main nurses
- I made friends with the families near our bed
I hope that her stay isn't too long and your little girl comes home soon. Remember to be kind to yourself.
coconut / 8079 posts
My son wasn't a preemie, but we had an extended NICU stay at two different hospitals. One of them provided vouchers for mamas who were pumping to get meals in the cafeteria. That was so helpful. Both hospitals also had a social worker/support person for parents. My DH also had a really hard time after seeing LO get resuscitated. It's so scary. Let people help you as much as you can and don't hesitate to ask for help either. Do you have family and friends nearby for support? Praying you and your LO get stronger each day and that your NICU stay is smooth!
apricot / 369 posts
@bluestriped bee: thank you so much! I just ordered the journal and calendar and am so excited to start using them I can't believe our little miracle is already 9 days old - it just blows my mind. Hope your twins are doing well!!
apricot / 369 posts
@Torchwood: that is such great advice - thank you! Sometimes I have a hard time asking for/receiving help, but now is not that time to do everything myself - especially because I physically can't do so much right now. I'm going to check out that post - it sounds like just what I need right now
apricot / 369 posts
@SwanSong: thank you so much!! It is so wonderful to hear about how you found a way to adapt to life in the NICU - its not easy, but I love how you talk about finding normalcy anidst all the chaos. I think I might pick up a boppy and then wait on the rest for now - Amazon can always get things to us quickly!
@madison43: thank you so much for sharing your NICU experience! Right now my husband is taking a really active role in Mattie's care since I physically couldn't for awhile - now that I'm starting to feel better I am slowly learning my way around the NICU. It is overwhelming, but I love being involved and helping with us much as possible. Haha pumping is definitely keeping me busy at night - although I know Matilda will probably eat more often and might be slightly less patient than my pump Yeah I seriously hope that no one says that to me right now!
apricot / 369 posts
@BabyMats: thank you so much! I love hearing about your nicu experience - I feel like hearing about your experiences makes this all seem like I can do it too if that makes sense. I'm still so scared and overwhelmed, but I can just focus on doing whatever I can to focus on taking care of Matilda - that's all that matters right now I am going to ask about primary nurses tomorrow - I love that idea!
@mrs green grass: thank you so much - I'm looking up your friend now
@mrsrccar: I love your suggestions!! Thank you!!! I'm trying to be nice to myself and to let go of all of the "why?" thoughts I seem to be having - I know there is no why for things like this - sometimes this is just the way life goes. Our little miracle is absolutely amazing and that's all that matters right now
@jhd: thank you for reminding me to reach out to the social worker on Monday. I spoke with the social worker when I was in the cardiac surgery ICU, but I think the NICU social worker will be more helpful At this point just talking about all of this makes me feel a bit better - I think I just need to let it out. I do have some family and friends nearby and I am trying to just take whatever help is offered at this point Thank you so much for your prayers!!
blogger / pomegranate / 3044 posts
@lauren0817: hello! If you search the blog for NICU a ton of posts will come up, many of which may be helpful! http://www.hellobee.com/tag/nicu/
My son was born at 32w and had a brain injury + 4/5 of his first months spent in two different nicus. I'll plug my nicu tips post for you, and wish you guys try best of luck! Please feel free to wall me if you'd like to chat more. http://www.hellobee.com/2014/09/12/tips-for-an-extended-nicu-stay/
apricot / 369 posts
@Mrs. Tiger: thank you so much!!! Right now I'm still so overwhelmed, but hearing about other parents and baby's experiences has been very reassuring Going to start reading the posts during my pumping sessions!
blogger / pomegranate / 3044 posts
@lauren0817: it's totally fine to be overwhelmed! Be kind to yourself and take time to adjust and heal