u/SuddenDebt4040

I feel like the closer to discharge we get the worse my mental health gets. It seems like every time I see a bit of light at the end of the tunnel my hopes get crushed, my ex 31 weeker’s now 1 month and 1 week corrected twins have been in the nicu for almost 5 weeks now. I expected a bit of a stay and even though seeing people come in after me and leave before me stung when I didn’t expect them to come home anytime soon it just was what it was. I focused on trying to eat healthy, stay hydrated, pump and Of course spend as much time as I could with my sweet babiesas I could! Then they started doing hearing and eye tests, gave them their vaccines, then the car seat trial and boom I was told one twin was able to come home Friday (was told he could come home today on Wednesday) and brother shouldn’t be too far behind him! I was over the moon so ready to have my baby with me even though I felt terrible leaving my other baby I was gonna have help here with my one baby so I could still go see and feed my other baby daily it felt like this was all finally gonna be over with and I was so happy.

I started getting the room ready because I’m staying at the Ronald McDonald house and everything was great until I came in the next morning and boom my LO had two low temps. The day before he had a low temp, oso we bundled him up with a long sleeve long legged onesie and 2 swaddles and he brought it back up immediately the night nurse said his temp was then high so she put him in a regular onesie one swaddle he did great all night then the morning I came in and he had his arms and legs out of the swaddle the we checked his temp it was low. We checked his temp an hour later it was still low so she got an issolet out and started heating it up and he had until it heated up to bring his temp up or he would have to go back into it and that would restart his process of going home for atleast a week. My nicu has a rule that babies can’t be in their open bassinet with hats on after the first 24 hours but my nurse was nice enough to let him wear a hat for a little while to help. Well thank god his temp went up, and has been good since. So now he has an issolet looming next to his bassinet that’s like a reminder that a low temp could set back our coming home day by a week if not longer which was giving me a crazy amount of anxiety.

Then last night I came in for their night feed and boom the nurse let me know he had a destat which he has not had in over a week. It wasn’t bad, didn’t go below 94 and he brought it back up himself but they couldn’t tell me if it was going to effect him coming home today or not until the doctors did their rounds this morning. Well i told my nurse to tell my morning nurse to call me if they end up deciding to hold off on letting him come home today so i wasn’t too upset when i actually go in there to see then and do a cpr class. Well i didn’t get a call all morning so i assumed it was a good sign, well wrong. They told me discharge was now pushed till monday which was heart breaking but good news was the where going to see about sending brother home with us on Monday as long as he doesn’t have to take a any feeds through the NG tube and doesn’t have any destats, well now he since has had 2. And baby A who is set to discharge on monday has not not been too interested in his last feed. He’s on ad lib and eating a range of 34-46 ml per feed and even with only taking about 20 ml with his last feed he still has reached his minimum for the day so they aren’t holding that against him.

But now I can’t even enjoy time with my babies because when I am there I am constantly worried about every little beep or alarm that goes off constantly stressed when my babies can’t stay awake during their feeds. It’s making me not want to be there at all it’s killing me to not be with my babies but I’m a stressed anxiety filled mess when I am there and I don’t think it’s good for me or the babies. I have been at the hospital pretty much all day then from 9pm -12 am daily and it’s really taking a tole on my mental health especially when worried about one little thing setting us back. I’m trying not to be selfish and I do want my babies to be completely healthy and ready when they come home but I can’t help but to get my hopes up and get excited when I feel like discharge day is close but then be crushed when it gets changed. Idk this is just wrecking my mental health. I’m going to get some help and find therapy because I know I need that but I also could just use some encouragement and kind words from people going through or have gone through the same thing.

My ex 31 week twins are now 36 weeks gestational age and 1 month corrected, yayy!! Both boys are doing so well and I’m so proud of the progress they have made. Both of them are in open cribs now and have been taking PO feeds as tolerated steadily gaining weight and the last 2 days they have had their hearing test, my twin that was smaller got a eye exam and their circumcision’s (not looking for other opinions on circumcision’s) are schedules for tomorrow morning so I would say they are getting them ready to be discharged really soon which we are so excited for!

Baby A even though he’s smaller is crushing his feeds hasn’t had any brachycardia events and has been holding his temp really well baby B takes most of his feeds but has heart rate drops almost every feed and gets really tired during feeds and tonight had one just laying there while awake then spit up a little after. They are doing baby A’s car seat test tonight and I have a strong feeling they are gonna send me home with baby A before baby B.

I don’t want baby B to come home while still having these events even if they are feeding related, he seems to not have as strong of a suck swallow breathe pattern as baby A does so I truly thing he just needs to grow out of it and or is having reflux issues as it always seems to be while eating and if he isn’t eating he spits up. I do burp him in between bottles but admittedly will sometimes wait till after his feed because most of the time if I interrupt him while eating he won’t latch back onto the bottle and I think that might be where I’m messing up. I feel so guilty because I feel like I’m either pushing him too hard or not holding him right or trying to burp him long enough I also think I should hold him upright like 10-15 minutes after he eats but sometimes it’s hard when I have to feel brother after him or sometimes I have to head home right after feeding him but I am gonna start doing that.

As I said I want baby B to stay and get better at eating and not having any events before he comes home because I’m already really nervous about bringing him home and him having an event at home without monitors. I know how to stimulate him and get him to breathe again but I’m scared what if it doesn’t work. But the guilt of maybe bringing one baby home before the other is eating me alive. I already feel bad about him having these events because he looks so tired and out of it after they happen but the thought of leaving him there but bringing brother home breaks my heart. How do others deal with this?

On top of that when he had his last heart rate drop when just laying in his crib I got a little upset/frustrated definitely not at my baby, I know he’s still young and just doing his best. He’s just a little baby and doing so good so I’m definitely not frustrated with him I just feel like we take one step forward and everything is going good the boom something happens and we take a step or two backwards. I try to not show my frustration but I guess I did when that happened because my fiancé told me I need to try not to get upset and frustrated atleast not when I’m there because “the nurses will probably take note of that” and now I’m super nervous they might think I was feeling that way toward my baby :( I just love them so much so when they have heart rate drops it makes me scared and sad. I hope I’m not the only one that feels this way.

My babies are 35 weeks old born at 31 weeks and 4 days. We were blessed for them to have no real health issues other then normal premature issue’s. When we where in the more intensive nicu wing they both had to have the bilirubin light a little bit, and delt with loosing some weight in the beginning, baby A had to have a cannula due to heart rate drops but he went off of that the had to have a pump for his feeds because he kept spitting up, but then both babies where moved to progressive care and we where so happy about that!

It seemed like as soon as they were moved to progressive care baby B started having heart rate drops so they put him on a cannula. Both boys are doing great gaining weight and they started letting me PO feed once per shift, then the beginning of this week they both started taking their entire feed and some when I breast-fed them so they switched them to PO feeding as tolerated since then they have also taken Baby B off of the cannula. They have both been having heart rate drops mostly while eating and some while sleeping so now today they said to take a step back doing back-to-back feedings and do every other feed. They also gave them a one time dose of caffeine to hopefully help them get over this hurdle.

I understand they’re only 35 weeks and they are still young and learning to breast-feed and bottle feed but I can’t help to feel like every time I get excited and I get my hopes up because they’re doing better, we take steps backwards and I know everyone always told me that that’s how it is in the Nicu, but it just sucks to go through it. It also doesn’t help that they are literally the only babies in my side of the progressive care unit that are still in issolates and I keep seeing babies come in there after us being discharged daily. The nurse practitioner told me baby A was doing 80 percent PO feeds so they where going to do a crib trial soon but that’s when they increased their PO feeds and they both started having heart rate drops again so I’m pretty sure that resets that.

I’m trying not to be selfish and get frustrated because I’m so ready to just be home in somewhat of a routine with my babies ( I live an hour and 15 minutes from the hospital so am staying at the Ronald McDonald house by the hospital) and I also just feel like every time I get my hopes up something happens. I know I have to keep in mind they are still young and are trying their best but have a lot going on themselves, they where already born earlier then they where ready for, they now are messed with by different people almost every day every couple of hours, and they are learning to do things earlier then they where supposed to so it’s all really tough on them too. I just love them so much and I want them to be healthy and with us but I know they are where they need to be right now. Just needed to vent a little bit about what’s going on as I’m sure many people have been in the same position I’m in.

My beautiful twin boys where born pre mature on April 19th at 31 weeks and 4 days due to placental abruption. They have been in the nicu and I’m so blessed for them not to have any serious medical issues other then typical premie things such as needing to gain weight, learn to eat on their own etc. they are so sweet and the absolute highlight of my life but I find myself really struggling recently with everything going on. I’m so lucky to be able to stay right by the hospital so that I’m not far from the babies as I live an hour and 15 minutes from the hospital but between pumping and keeping up on pump parts, wanting to be at the nicu as much as I can, constantly getting texts and calls from family for updates and being checked on, doctors appts, and keeping up with daily tasks such as cooking/ making food, eating, cleaning the room I’m staying in, and laundry I feel like I’m literally drowning and keep messing stuff up.

Yesterday and the day before I wrote the wrong dates on every single bottle of milk I labeled to bring the the nicu and didn’t realize it until later on in the night, I also fell asleep and didn’t take about 2.5 oz I pumped to the fridge and it passed the 4 hour mark so I had to dump that which really stung with how hard I have been keeping up with my pumping schedule. Then this morning I had a stupid blood pressure appt because they diagnosed me with post partum hypertension even though I only had one high blood pressure reading while in the hospital, and for some reason I had it in my mind it was on Monday even though I had it in my calendar for today! Luckily woke up with 15 minutes to spare and threw clothes on and basically sped walked to the appt as it’s right next to the hospital. Then it seems like every single morning I tell myself I’m going to get up early do all the stuff so that I can go to the nicu early and stay longer but then I just can’t get myself up out of bed because I have already been up all night pumping and by the time I’m done pumping washing the parts and taking them to the fridge across the house I’m staying in then get back in bed I only have about 2 hours to an hour and a half to sleep before I gotta wake up and do it all over again.

My babies are the only thing that makes me happy right now and when I’m with them holding them, changing their diapers and getting them dressed and swaddled all these thought melt away but it’s so hard to get up there when I have to make sure I pack my lunch, pack their milk I pumped over night and any clothes or blankets I washed, pack my pump parts to I can pump at the hospital then not to mention they have break times from like 3-4:30 pm and 6:30-8:00 pm so if I don’t go from like 8-3 pm I have to sit around at the hospital and wait for break to be over just to have another hour and a half, which I will absolutely do to be able to see them for longer it’s just a pain in the butt but I’m so grateful for the nurses and understand they completely deserve breaks too!

Then family and friends constantly texting and calling to check in and get updates is just exhausting, I’m so happy we have support and love but sometimes it’s just overwhelming especially on days where not much has changed for the babies.

Then there’s the guilt… I am constantly feeling guilty. I feel guilty my babies had to be born so early, that my body didn’t do its job and keep them in until they where ready,i feel guilty that I don’t go to the nicu enough even though im up there 3-5 hours per day and spend as much of that time as i can doing skin to skin and kangaroo care. I feel guilty for even complaining about any of this. I feel guilty when i log into their cameras and they are awake just staring above or their crying. I feel guilty that i could literally be up there all night if i wanted but i cant bring myself to get out of bed because im just so exhausted. I have a wonderful partner who is so supportive but unfortunately he has to work because bills don’t stop and he cant even stay with me by the hospital because we have dogs and a cat that need to be taken care of and live in a state with no family or trustworthy friends, so after being with him everyday for 10 years im doing this all on my own and i feel like everyone needs something from me but i have no one to turn to when i need something. I also feel guilty that my poor fur babies went from having me all day everyday to now seeing me once a week and even then im so tired from pumping and busy trying to get our small home ready for when the babies come home that i barely get to spend time with them.

The part that scares me the most is if i feel this overwhelmed and tired and I don’t even have my twins home yet. On one hand I feel like it will be easier when they are home because I will be in my own home I don’t have to walk across a huge house to get food or put milk in the fridge or do laundry and I will have them with me so I won’t have to pack a whole bag to come to the nicu and I will be on a schedule but on the other hand I feel like it will be harder because obviously Ill have 2 babies to change, feed, and get back to sleep and take care of while still juggling pumping, cleaning, cooking and taking care of the animals. Idk I just feel so overwhelmed and tired and just needed to vent and get advise from others going through or have gone through a similar situation. I do wanna say I’m so grateful my babies are doing good and I am in a position to be able to visit them every day as I know not everyone is in the same position I don’t want to ever seem ungrateful.