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the0ph1lus

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Hi everyone, I'm new here. Our son (an IVF baby due to CBAVD with me + PCOS with wife) was born on April 8th at 34+1 weeks by c-section due to severe pre-eclampsia that culminated in my wife being hospitalized with 180/106 blood pressure. She had steroid shots on 4/5 and 4/6, and then on 4/8 the MFM told us the benefits no longer outweigh the risks, and it's time to deliver. Baby boy arrived shortly after the eclipse and less than half a day before my own birthday. He arrived with APGAR scores of 8 and 9 after one and two minutes and weighing just 1830 grams (4 pounds flat). He didn't need any light therapy and he quickly graduated from the lid on his bed. At first he didn't need any help breathing, but one week later they told us that now that he's 35 weeks, the standards for oxygen saturation have gone up and he's considered to be regularly sitting low. By canula they've been giving him 1 liter of air and oxygen has ranged between 21% most of the time to as high as 25% during a small portion of the time. He goes down during feeds- beep beep, beep beep, beep beep- that alarm is always stuck in my head. His weight gain has been great, he bottomed out at 1720 a few days after birth, and two days later the daily gains starred, one to two ounces per day. 13 days after his birth his weight is 2176 grams. I'm hopeful he'll reach 5 pounds in 2 more days. Today they upped his volume for feeds to 45 mL (every 3 hours).

My biggest concern is how sleepy he always is, which I'm sure is something 8000 people before me have said. He's shown the ability to latch, several times over the last week or so, but he doesn't suck for long enough for anyone to think he's gaining any real volume/calories. His max time latching was 10 minutes, but again not all that much sucking when latched. My wife's been a rock star with that every 3 hours pumping schedule. She's getting triple digits of mL of milk every 3 hours now, and we have a good routine overnight at home where she gets up and pumps, then wakes me up and goes back to sleep. I get up and bottle, label, and store the milk, then I go back to sleep too. Then we repeat 3 hours later.

I've read that 36 weeks is the average discharge without complicating factors, and that "you'll stay until term" is just what they say to manage expectations. Baby boy is 36+0 today, though, and nowhere near ready to go. My wife can't start the holy "algorithm" for breastfeeding because he can't stay awake long enough at the breast to make it worth it. And while he spends the majority of the time at room air without any extra O2, he has to be able to maintain his stats for 48 hours with no cannula at all.

Lactation and speech path (which is actually what I do for a living myself, though not with kids THIS young) have been great, but nobody seems to have any magic ideas for how to get him to just stay awake long enough to practice suck/swallow/breath.

This reminds me of the powerlessness of infertility, but in a whole different way. For a while I never thought we'd have a baby. Then he came and I get to see him and hold him, but I feel like I can't help him do the things he needs to do. There's really no substitute for the womb.

https://preview.redd.it/vvqtr7sfkwv...bp&s=919a1d87e413760c0653d816a62d14d08ace9a6f

https://preview.redd.it/wt3jy7sfkwv...bp&s=773a89a0f4d6dde20b69b81dca51ee17e6a5dd00
 
@the0ph1lus Hi! So sorry you’re here and had this experience, and also big congrats on the baby. IVF is rough, and so is the NICU. It sounds like your son is doing great! He’s doing all the right things, and so are you and your wife. My 26 wk + 5 day baby is 38 wk + 5 days old today, and we’re still working on having enough alertness and energy for eating. Our strategy, which I bet you’re already doing, is to only offer bottle or breast when she’s actively awake and cueing. We tube feed the rest. This ends up being just about every other feed when she’s ready for the bottle. She’s only ever eaten a full bottle (also 45 ml for us right now) when she had a tube feed for her previous feed.
That kind of schedule may or may not work for your baby, but you and your wife are definitely giving him what he needs just by being there when you can, taking care of yourselves, and giving him your love.
 
@katrina2017 thanks for your reply! Congratulations on your little one getting so far! Yes, they did tell us to only try when he's awake and cueing. Sometimes I think I'm still learning to recognize the cues. He has all these little movements from his developing nervous system and that sometimes includes his mouth/lips and it's not actually rooting or anything. I'm trying to learn that "premie language" they talk about. But I also sometimes feel like their advice contradicts itself. For example sometimes they'll say things like "if he's awake and really cueing, you can try to see if he'll practice latching even if it isn't time for a [tube] feed." But then they'll say things like "let's establish a routine where first we change diaper, then we put him to breast, so he'll know that's always when to expect it, not other times." Those aren't verbatim quotes but that's how we received them. And that's tough to balance, too, with the whole idea of letting him sleep in between. You want us to let him sleep between feeds, because obviously sleep is important for development and for energy. But then you also want us to try to nurse when he's cueing, and he isn't always cueing at the same time. He DID start to learn a routine, but then they changed his care times from 2/5/8/11 to 3/6/9/12 (AM and PM). So that was annoying too
 
@the0ph1lus Yes, oh my goodness, we also get contradictory advice and changing care times. I’ve gotten to where I will just put her to breast whenever she cues even if it’s not a care time, and same thing with diaper changes. Occasionally, I’ll get a remark about letting her sleep and grow, but most nurses are encouraging and say that I know her best so it’s fine.
I missed the pictures of your son earlier, and he is so cute!!!!
 
@the0ph1lus Congratulations on your little one! He is precious! I completely understand how you feel. We also have a baby by fertility treatments and she was born 34+4 due to a minor placenta abruption. I had also gotten the steroid shots and it developed her lungs sufficiently where she was always on room air. But she had the same issues feeding that you describe.

I read through dozens of posts in this sub while I pumped and it was frustrating to keep reading “it’ll click for them” because it just seemed like it was not happening. We had the same frustrations of balancing the tube and non tube feeds and when she wouldn’t really transfer from breast we had to bottle feed which again she’d take anywhere between 10-15 ml and fall asleep.

One thing we noticed around 36+0 was she would wake up at 2.5 hours and cue but the nurse wouldn’t show up until 3 hours and by then she’s lost interest and not want to latch or bottle feed so they’d give her the feed via tube and that would count negatively against her possible discharge. So we spoke to the NP to be able to feed her per cue and that made a big difference. And it actually did “click” for her around 36+3. and we were able to bring her home at 37+0!

Hang in there- I know this is really hard! But your baby is in the best hands possible right now!
 
@turfbanner WOW, just 4 days later?! When you say room air do you mean cannula with room air as the flow, or no cannula at all? I assume you mean the latter because they've told us in order to go home he would need to prove he can maintain his oxygen (AKA no "beepy boy" as I call him when the machine alarms) with no cannula for like 24-48 hours. I wish he could go off the cannula because even when they have it at 21% oxygen which is the same as room air, it's more wires/tubes. When he alarms it makes me anxious not necessarily because I think he's extremely imperiled but because it makes me insecure about how I'm holding him. So then I get stiff and can't figure out the best position even though there's no such thing. When we have stretches of time where he sleeps on my chest with no beeps at all, I am happier than ever. There's nothing better than that feeling

They have this thing called a "breastfeeding kickoff" where they want you there basically as close as possible to 24 hours a day for 2-3 straight says and they will offer exclusively breastfeeding (but if he doesn't get enough based on their "algorithm" then they supplement by tube. But strictly no bottles. FWIW we haven't even attempted bottle, even once. My wife wants to breastfeed until she has to go back to work in early/mid July, at which point we'll send bottles to daycare with pumped milk. But anyway what's still sorta unclear to me is whether the kickoff is still every 3 hours or whether it's whenever they're cueing

The first time we tried breastfeeding "off schedule" was today when I noticed he appeared to be really cueing, also right around 2.5 hours like you said. I think we just caught him in a mood though, because he had an absolute fit, crying and shooting his pulse up to like 200. So we obviously aborted that and she soothed him very quickly and easily. I'm sure we will try again
 
@the0ph1lus yeah I meant no cannula at all. We got lucky that she was breathing ok on her own from the start. TBH We started bottles because when she was unable to transfer sufficiently from breast, we didn’t want that to be the reason she didn’t come home and figured we’d work on BF later. But of course you may want to approach that differently. hopefully the lactation consultants can help also!

My husband and I were lucky that we had sufficient leave and our NICU had a bed for a parent, so one of us was there almost round the clock. 3-4 days before she came home we started doing every feed and insisted the nurse wake us to do the feed versus putting it in the tube because we knew if we tried she’d take at least some part of the bottle.

Good luck- I know this is hard! You’ll be taking your baby home real soon I am sure!
 
@turfbanner We did ask about bottles at rounds this morning, and they said that bottle feeding is not appropriate because of the cannula. Even though he spends most of his time at 21%, the minimum because it's the same exact amount of oxygen as the ambient air, the fact that he needs that flow of forced air at all apparently means that bottle feeding is't appropriate yet, per doctor
 
@the0ph1lus My LO was 34+1 and had the same problem. She won’t stay awake for latching and we weren’t very hopeful about her coming home at 35+4 days. Then I insisted the doctor to try bottle feeding. They were not very interested at first but agreed to try one bottle. She took the full bottle! From then on she never had to feed anything via the tube and after 48 hours of bottle feeding she was discharged at 36+1. Hope your LO will be home with you soon.
 
@jesusiscomingbacksoon Update we did ask, and they said that bottle feeding is not appropriate because of the cannula. Even though he spends most of his time at 21%, same exact amount of oxygen as ambient air, the fact that he needs that flow of forced air apparently means that bottle feeding is't appropriate yet, per doctor
 
@the0ph1lus How’s he doing now? Your last paragraph hit me hard. My journey was kinda similar, years of infertility, then this miracle naturally conceived baby just before my scheduled IVF but had to head home without her. I felt so empty at that time. But this shall too pass and very soon you’re gonna get sleepless nights with this cute little dude! Till then, hang in there! Wish you all the best.
 
@jesusiscomingbacksoon He's better, he actually made a lot of progress the day after my last comment. Lactation declared that he's showing sufficient skills to begin their algorithm program where they subtract from his tube feeds based on the amount of time and quality that he's latching, and he's gotten credit for 10 minutes of quality sucking (out of a longer duration latched, but not whole time latched was good). They're supposed to take him off the cannula today, too, assuming last night went well. We haven't heard about last night yet, we'll be there shortly.

I'm sorry that you know what that's like, it definitely sucks. But i'm also glad you didn't have to go through IVF, because that'd just be even worse haha. It's not fun
 
@the0ph1lus My baby (30+4) who coasted through her NICU stay was very sleepy and didn't show much interest in feeds until about 37 weeks and we went home at 39 weeks. It was hard knowing that some babies go home at 36/37 weeks and take their full feeds, but every baby is different. Feeding purgatory was the hardest part of our stay there.
 
@bubatuf Thank you for replying, it feels good to know what others went through. Yes, knowing about average stay is a curse, my research ability really hasn't served me well here.
 
@the0ph1lus It’s probably not what you want to hear, but he’s still very young and just needs more time. He should be this sleepy. The suck swallow reflux isn’t present until 35ish weeks and it usually takes a healthy baby a week or so (after being off oxygen support) to master oral feeds. Breastfeeding takes more energy than feeding from a bottle. If BFing is the goal, try every other or every third feed to give him a break. Overall, just be patient and give him time. He’s still a month early!
 
@woodrowcall No need to apologize I like straight shooters. He's making progress, today the doctor said they anticipate him being off the cannula "within a few days" and lactation declared his feeding skills are good enough to start the holy algorithm. They don't use the word holy, I added that one in. So they take out from his tube feeds some amount that they're extrapolating from time latched. Way too imprecise for my anxiety but I'm trusting them.
 
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