UPDATE post 118 Help me make hospital and NICU as good as possible

[happypamama]

Definitely pump every three hours, period. Around the clock. You may end up with extra milk at the end, but it will be worth it.

 

This is going to be hard, the interrupted sleep. My healthy newborns sleep with me, so if they don't poop, I'm used to latching them on, half awake, and falling back asleep. I'm going to need to view my day as 24 hours rather than night and day and learn to get serious sleep and not just my usual catnaps during the day.

 

I don't know if Hershey is a teaching hospital or not.

 

Oh, yes. It's actually the teaching hospital for mine and DH's alma mater, so their lion logo is all over everything, which is both hilarious and oddly comforting because it automatically feels more familiar. Our NICU meeting was run by the resident, with his attending sitting right beside him. Good to know there may be rotations! That would have been disconcerting to me if I hadn't known beforehand.

 

You can also sleep with something or wear something next to your skin during the day that you then leave next to him at night.

 

Yes, I should start doing this because he could come anytime. They told me to come to my checkups with a bag of necessities, which did make the weekend stay easier because at least I had my favorite pjs, stuff to do, and phone charger, but at any point, I might go for a checkup, and they might decide that he needs to come out that day. Whatever I can do to be prepared will ease my heart. I'll go see if I have some soft flannel I could cut into small cloths to keep in my shirt. Good idea!

 

Remember that any time you get with baby prior to his due date is "bonus time." Time he was supposed to spend still growing inside of you, and all of that growth and development still has to happen (which helps accept the NICU rules) but time that you now get to watch it happen, instead of just feel it happen. Focusing on it in that manner will help you keep this time in perspective.

 

I really like this. It's hard not to feel overwhelmed at what he and I are losing, especially compared to what his siblings all got, but it can't be helped.

It will be kind of neat to see the stages happen, and I won't miss the tiny stick leg stage that I did with the others because they all came big and late. And none of it really matters if he just stays alive. He's still at huge risk of stillbirth (but even bigger risk at this point of never being able to breathe outside, even with help, so that's why he's still inside).

 

Ask about protocol in case of anemia, in case baby needs a blood transfusion. You and your husband may wish to donate blood right away when baby is born,

 

This is really good. I would not have thought about that. I gotta make sure my iron stays up so I have blood if he needs it, although DH does have the same blood type, so that's helpful. We will inquire about whether he or I can bank blood in case the baby or I need it.

 

And don't worry if it's a small amount at first; they will use it. And if he is very early, he may start off only getting a tiny amount...if I remember correctly, my little guy's first tube feelings were for 7 or 8 mL, which worked up to 11, and then 15.... It was a long while before he got a full ounce at a single feeding.

 

Do you have a suggestion for how I should store the milk to minimize chances of it being wasted? Obviously I don't want to bring them 8 ounce bags right away. 1 ounce? 2 ounce? I tend to have a strong supply quickly, so if it can be stored in small amounts to cover any shortfalls later, that would be good.

 

Praying for you and your little one; it sounds like you have an excellent hospital and NICU, and really are getting the very best care possible. Relax, trust in The Lord, read Psalm 139 and remind yourself it applies to your sweet boy. God knows, intimately, every detail of this. Above and beyond the doctors and nurses, HE is and will be caring for your little one.

 

If you have any more questions, ask away.

Thank you. I really do feel that we're in the best human hands possible. The whole thing started because the big kids wanted to know the gender. We've never had an u/s mid-pregnancy, but if we hadn't, we'd be blissfully unaware and maybe not getting the right help. I feel like it was a gift from God that we were alerted to the problems, and I keep reminding myself that He is healing the baby, one way or the other. As I told my older kids, this is hard for us, but no matter the outcome, it does not end badly for our baby. Our baby wins no matter where he goes home.

Edited December 19, 2016 by happypamama

[TheReader]

This is going to be hard, the interrupted sleep. My healthy newborns sleep with me, so if they don't poop, I'm used to latching them on, half awake, and falling back asleep. I'm going to need to view my day as 24 hours rather than night and day and learn to get serious sleep and not just my usual catnaps during the day.

 

Oh, yes. It's actually the teaching hospital for mine and DH's alma mater, so their lion logo is all over everything, which is both hilarious and oddly comforting because it automatically feels more familiar. Our NICU meeting was run by the resident, with his attending sitting right beside him. Good to know there may be rotations! That would have been disconcerting to me if I hadn't known beforehand.

 

 

Yes, I should start doing this because he could come anytime. They told me to come to my checkups with a bag of necessities, which did make the weekend stay easier because at least I had my favorite pjs, stuff to do, and phone charger, but at any point, I might go for a checkup, and they might decide that he needs to come out that day. Whatever I can do to be prepared will ease my heart. I'll go see if I have some soft flannel I could cut into small cloths to keep in my shirt. Good idea!

 

 

I really like this. It's hard not to feel overwhelmed at what he and I are losing, especially compared to what his siblings all got, but it can't be helped.

It will be kind of neat to see the stages happen, and I won't miss the tiny stick leg stage that I did with the others because they all came big and late. And none of it really matters if he just stays alive. He's still at huge risk of stillbirth (but even bigger risk at this point of never being able to breathe outside, even with help, so that's why he's still inside).

 

This is really good. I would not have thought about that. I gotta make sure my iron stays up so I have blood if he needs it, although DH does have the same blood type, so that's helpful. We will inquire about whether he or I can bank blood in case the baby or I need it.

 

Do you have a suggestion for how I should store the milk to minimize chances of it being wasted? Obviously I don't want to bring them 8 ounce bags right away. 1 ounce? 2 ounce? I tend to have a strong supply quickly, so if it can be stored in small amounts to cover any shortfalls later, that would be good.

 

 

Thank you. I really do feel that we're in the best human hands possible. The whole thing started because the big kids wanted to know the gender. We've never had an u/s mid-pregnancy, but if we hadn't, we'd be blissfully unaware and maybe not getting the right help. I feel like it was a gift from God that we were alerted to the problems, and I keep reminding myself that He is healing the baby, one way or the other. As I told my older kids, this is hard for us, but no matter the outcome, it does not end badly for our baby. Our baby wins no matter where he goes home.

Re:storing the milk, the hospital will give you milk collection bags or bottles, and just use those. They will not let any little amount go to waste. Each pumping session should be it's own bottle, labeled (they will give you the materials for this), and just freeze and take like that (or, since you will be across the street, probably just refrigerate; they will give you the details) and they will use what they need as they need it.

 

I ended up with an ice chest full of extra, which we used at home while he was transitioning back from bottle to breast, and donated some to a friend as well.

 

I will be praying for you all; it sounds as though you will be well prepared.

[happypamama]

As a homebirther, I think the hardest thing for me was the complete lack of privacy. And the noise! It's easy to adjust to medically necessary interventions, because you just want them to do anything necessary for your baby. It's much harder to always have someone there. Always watching you. Always taking notes. Always talking. If the nurses aren't talking to you, they're talking to the doctor or to other parents or to each other. I just wanted to be alone with my baby, but it just can't happen in that environment.

 

 

Yes, this is going to be very hard. I'm used to calling the shots and having the midwives do what I want, and we don't even typically have family stay with us after the birth. They come the first day or two and then leave us alone for a week or so, and they don't stay in our house. Having so many people around and also having people other than DH taking care of me is really going to be pretty lousy.

And be prepared for grief. I was okay at first. I was even okay being on maternity surrounded by mamas with their healthy babies. I just held it together, because I had to. I was okay until Day 9. I was running on shock and adrenaline up to that point and then I just fell apart. I cried all day on Day 9.

 

Good to know. Yes, I am worried about the hormone crashes since I won't be able to get my usual extra sleep and quiet.

 

I also think you should prepare yourself mentally for a long NICU stay. Yes, there are those miraculous preemies who don't need to go to the NICU at all, but there are also those preemies who do much worse than expected for their gestational age and need a longer than expected stay. If you know going into it that you baby will likely have medical issues, then you are probably looking at the latter. I think it's good to mentally prepare for that.

I am really trying to do that. This thread is helping so very much by lessening the shocks at birth. I'm trying to mentally prepare for so many different outcomes while also trying to have hope that it can all be okay. I feel like thinking too much about the NICU or him dying is giving up on him, but I think DH thinks it's more realistic and maybe that I'm in denial. It's very strange to think about what burial preferences we want while also thinking about what baby supplies I need while he kicks away happily in there.

[happypamama]

One thing that they didn't tell me until after the fact, contractions are worse when you've been induced. For DD, they did three rounds, the easy way, the hard way and the hard way again. I was ready to kill someone.

That's what I keep hearing. I'm a little worried about that. They said it's always my choice, so part of our decision, if we get close to term with all still looking good, will include asking about Bishop's score and maybe waiting if it does seem like I'm nowhere ready. Even 36 weeks is way early for me.

[happypamama]

If you have a family medicine that you use for a doctor, I'd highly recommend a pediatrician for the first year or two or three. Preemies have a huge risk of many problems. Most don't have significant issues, but everything is different. S/he will need iron and vit. d supplements at the minimum, possibly high calorie supplements, there's different recommendations for screening tests of all types (development, blood pressures, weights, gross/fine motor, hearing, vision, etc).

 

Even if you super puffy heart love your family med doctor, nothing can replace the experience a pediatrician has for preemies. Pediatricians train for 6-12 months in NICU and delivery, plus have lots of experience with problems in development. Most family medicine doctors never do a NICU rotation or only a month or two. They spend their time seeing patients across their lives. Pediatrians only see kids.

 

Some hospital neonatologists now see patients after discharge, but it's not super common. If you have a neonatologist as the child's doctor after delivery, they will be seeing the child as the primary doctor.

 

Even for "near preemies" born close to term, they are at much higher risk of problems than term babies.

Yes, it's on my list when she gets back from maternity leave to discuss with her just how much experience she has with special needs babies. She's always been really on top of things (heard a small murmur in one infant's heart and got us an echocardiogram), I have no problem seeing a more specific doctor for a while. I do super puffy heart love her (she happily wrote the u/s request that started this whole saga as a favor to me), but if we need a pediatrician, we will do that. I also already have a speech therapist that I also super puffy heart love, at a very nice rehab facility, so should we need those things, we will request them. But we're nowhere near that stage yet.

[lllll]

:grouphug:  and praying for your baby and your family.

 

nm

Edited December 21, 2016 by ..Kathy..

[Pippen]

:grouphug:  and praying for your baby and your family.

 

No preemies here, but one of my dd's just went to a dermatologist about some eczema on her hand.  Seems one of the best things she had dd do is rub Vaseline into her hands after she dried them.  The key is to rub and rub and rub the stuff in.  Her hand is back to normal now.  Plus, I don't think there are any annoying chemicals in Vaseline - not sure.

 

Also, I had the pitocin with my first delivery (normal birth, but induced).  And those contractions were definitely the hardest I ever had with all my deliveries.  But it was also my first baby, so take that with a grain of salt.  

 

Vaseline alone never did much for me, but Vaseline with cocoa butter has been a game changer!

[wapiti]

Throwing in my two cents - first, on the placental insufficiency - are they checking for clotting issues?  prescribing anticoagulants? I'd also ask if they mind if you take fish oil (blood thinner, immune modulator).

 

Second, on having a premie - I will second the advice for as much breast milk as you can get in and for as long as possible.  The importance is for the immune system, from my perspective not so much the antibodies themselves but for setting up the microbiome in the gut for the long term.  Premies can really suffer in this area later in life, with the results not necessarily pointing in the gut direction.  Also, it's usually not possible to decide for yourself, just more luck, but I would hope to avoid antibiotics during the first year or two as that can also really add to gut issues.  (BTDT.)

 

Third, on surviving the NICU - having others deliver meals and care for your family would be a huge help.  It is exhausting.  It is a marathon.  There is no sleep involved at any point, even after the baby is home, i.e. expect it to take longer for baby to sleep through the night, even longer than baby's adjusted age (adjusted age = as if baby were born at due date).  Expect a 3-hour around-the-clock feeding schedule until 6+ months of unadjusted age (3-hour schedule best for growth according to NICU docs and the regular ped), so again, no sleep.

Edited December 19, 2016 by wapiti

[TheReader]

Re:length of stay....a good rule of thumb, for a healthy preemie, is somewhere near the due date. For a preemie with known health issues, it can be longer (and a healthy preemie can go home sooner, but for planning purposes, that is really the best thing to sort of have in your mind as to when baby will come home).

[happypamama]

Throwing in my two cents - first, on the placental insufficiency - are they checking for clotting issues? prescribing anticoagulants? I'd also ask if they mind if you take fish oil (blood thinner, immune modulator).

 

I'm not sure, TBH. I've only seen MFM twice so far. They've taken blood for a few things (genetic testing, infection, and preeclampsia/HELLP) and maybe more, so it's possible.

 

Second, on having a premie - I will second the advice for as much breast milk as you can get in and for as long as possible.

 

Oh, trust me, I'm a diehard breastfeeder. I've never used a bottle or formula, so it's hard to accept that that's likely this time. Thankfully, DH agrees, and my parents/ILs are supportive enough that everyone will do whatever they can do that I can rest and pump as much as possible. We will get him every drop of breast milk we possibly can.

 

Third, on surviving the NICU - having others deliver meals and care for your family would be a huge help. It is exhausting. It is a marathon. There is no sleep involved at any point, even after the baby is home, i.e. expect it to take longer for baby to sleep through the night, even longer than baby's adjusted age (adjusted age = as if baby were born at due date). Expect a 3-hour around-the-clock feeding schedule until 6+ months of unadjusted age (3-hour schedule best for growth according to NICU docs and the regular ped), so again, no sleep.

Gack, that sounds so rough. I've had offers from local friends for meals and help, but I've declined for the time being in case this goes on for a long time. It does sound like a marathon; I'm trying to pace things a bit to leave as much reserve of everything as possible.

[happypamama]

Re:length of stay....a good rule of thumb, for a healthy preemie, is somewhere near the due date. For a preemie with known health issues, it can be longer (and a healthy preemie can go home sooner, but for planning purposes, that is really the best thing to sort of have in your mind as to when baby will come home).

Yes, that is what I read as well, so probably March, if not April. Maybe February if he makes it to induction stage and is merely small. I think at this point, they expect him to be healthy, albeit with standard preemie issues -- IF his lungs get enough fluid to develop fully. If they don't, he's not making it past a very short period of time. But we've seen all the standard parts at at least one u/s, I think, so I hope that is good news. The MFM said Friday, "At this point, I actually don't think it's the baby. I think he's normal. I think it's the placenta, and at some point, we may need to cut out that middleman." Of course, low fluid could lead to secondary issues, but at this point, he doesn't have the concerns that he would if the genetics were quirky.

[Pippen]

Throwing in my two cents - first, on the placental insufficiency - are they checking for clotting issues?  prescribing anticoagulants? I'd also ask if they mind if you take fish oil (blood thinner, immune modulator).

 

Second, on having a premie - I will second the advice for as much breast milk as you can get in and for as long as possible.  The importance is for the immune system, from my perspective not so much the antibodies themselves but for setting up the microbiome in the gut for the long term.  Premies can really suffer in this area later in life, with the results not necessarily pointing in the gut direction.  Also, it's usually not possible to decide for yourself, just more luck, but I would hope to avoid antibiotics during the first year or two as that can also really add to gut issues.  (BTDT.)

 

Third, on surviving the NICU - having others deliver meals and care for your family would be a huge help.  It is exhausting.  It is a marathon.  There is no sleep involved at any point, even after the baby is home, i.e. expect it to take longer for baby to sleep through the night, even longer than baby's adjusted age (adjusted age = as if baby were born at due date).  Expect a 3-hour around-the-clock feeding schedule until 6+ months of unadjusted age (3-hour schedule best for growth according to NICU docs and the regular ped), so again, no sleep.

 

Also on survival. Stock up on paper plates. Seriously. 

[happypamama]

Also on survival. Stock up on paper plates. Seriously.

Oh yeah!!

[wapiti]

Oh, trust me, I'm a diehard breastfeeder. I've never used a bottle or formula, so it's hard to accept that that's likely this time. Thankfully, DH agrees, and my parents/ILs are supportive enough that everyone will do whatever they can do that I can rest and pump as much as possible. We will get him every drop of breast milk we possibly can.

 

My advice:  be gentle with yourself on the need for formula.  Focus instead on not quitting breastfeeding for some length of time, whatever that may mean (e.g. keeping enough pumping/feedings such that supply stays up).  If it helps to have a few formula feedings in there so you can rest the milk machine, then do it.  For example, if, after a few months, you are *losing your mind* (that is a *warning*) on the 3-hour clock through the night, maybe that would be a good time to put a volunteer to work with formula (or pumped stash if you have it).

 

I fell off the end of my rope with pumping when my 33-week twins were only 9 weeks old it is one of my regrets, though I didn't have an understanding beyond extremely vague benefits.  My sicker one now has some major immune issues; not sure I could have prevented them (lots of genetic polymorphisms at play) but our immunologist seems to think that certain things may have contributed (he was septic and on antibiotics from birth for multiple reasons, not that I could have avoided them, but I wish I had put off, say, the hep B and probably some of the other vaccines).  The development of the premie immune system takes much longer than for a term baby and the gut effect is important.

[happypamama]

My advice: be gentle with yourself on the need for formula. Focus instead on not quitting breastfeeding for some length of time, whatever that may mean (e.g. keeping enough pumping/feedings such that supply stays up). If it helps to have a few formula feedings in there so you can rest the milk machine, then do it. For example, if, after a few months, you are *losing your mind* (that is a *warning*) on the 3-hour clock through the night, maybe that would be a good time to put a volunteer to work with formula (or pumped stash if you have it).

 

I fell off the end of my rope with pumping when my 33-week twins were only 9 weeks old it is one of my regrets, though I didn't have an understanding beyond extremely vague benefits. My sicker one now has some major immune issues; not sure I could have prevented them (lots of genetic polymorphisms at play) but our immunologist seems to think that certain things may have contributed (he was septic and on antibiotics from birth for multiple reasons, not that I could have avoided them, but I wish I had put off, say, the hep B and probably some of the other vaccines). The development of the premie immune system takes much longer than for a term baby and the gut effect is important.

I appreciate that, and I'm sorry you went through so much! I selectively/delay vaccines anyway, so I will definitely be putting off anything that isn't a huge risk early on (might get the DTaP and some of the others on schedule). I'm sure he'll get the RSV shot(s?), and I'm quite okay with that because he's at such a high risk. It's hard to balance -- lower immune system so more subject to complications from illnesses but lower immune system so that's an especial lot to put in his system. Our doc is friendly regarding different vaccine schedules, so hopefully she can give me some good advice and/or refer me to a pediatrician or specialist who can help me figure out what is right for this particular baby.

[happypamama]

Also, I'll ask the neonatologists about preemie probiotics and maybe a referral to someone else like a GI or immunologist or someone for more help. My kids are healthy but do tend to have some asthma and allergies (not to food, but environmental and anaphylactic to bee stings for one), as do I, so I want to do what I can to boost things for this little guy.

[happypamama]

Another question for those who had NICU babies as subsequent children. I chose to birth my other babies in ways that ensured they'd be close to me and all of that. I realize that this baby needs different things, and I'm okay with that. But how do I handle the sense of loss and guilt for him not getting the same stuff my others got? Am I going to spend the next eighteen years trying to make up for it? I can accept that a healthy baby is the most important thing, and truly, it is, but I still have to deal with the guilt that I couldn't give him the best.

 

Also, is it possible that he might feel like a stranger to me for a while? DH and/or I caught all of our others, and they never once left my side. I was the first to touch any of them and pulled them to my chest right away, and I did all their initial blanketing, dressing, feeding, and even weighing for some of them myself. They spent their first nights snuggled against me, holding my hand. All of that is being taken away from me, and there's a strong chance I won't even get to see him for a while, much less care for or hold him. I'm afraid when I do, he will feel like someone else's baby. Is that typical?

[shawthorne44]

happypamama, hugs.  I got a little teary.  

[MedicMom]

Another question for those who had NICU babies as subsequent children. I chose to birth my other babies in ways that ensured they'd be close to me and all of that. I realize that this baby needs different things, and I'm okay with that. But how do I handle the sense of loss and guilt for him not getting the same stuff my others got? Am I going to spend the next eighteen years trying to make up for it? I can accept that a healthy baby is the most important thing, and truly, it is, but I still have to deal with the guilt that I couldn't give him the best.

 

Also, is it possible that he might feel like a stranger to me for a while? DH and/or I caught all of our others, and they never once left my side. I was the first to touch any of them and pulled them to my chest right away, and I did all their initial blanketing, dressing, feeding, and even weighing for some of them myself. They spent their first nights snuggled against me, holding my hand. All of that is being taken away from me, and there's a strong chance I won't even get to see him for a while, much less care for or hold him. I'm afraid when I do, he will feel like someone else's baby. Is that typical?

My worst fear was not bonding with Caden. My others were born by c section but were never once out of my sight(we used a hospital with no nursery and all care was done at mom's bedside). Sometimes when he was in the nicu, I did feel like a bystander, a little. Honestly, though, once he came home, I was very clearly mom. -And remember, those weeks in the nicu are weeks he isn't even supposed to be here. It is likely he will come home around his due date, and for all practical purposes he will be a newborn. I took my maternity leave when Caden came home and went to bed with him, basically, for two weeks---just like I had with my others. Even though he technically wasn't, he was a newborn, and I treated him just like I'd treated my others as newborns.

 

By the way, I worried that he would feel like a stranger. But the moment I saw him and was immediately able to gently touch his head and hold his hand, all my mommy instincts kicked in. That was my baby, even if I hadn't even seen him his first two hours and couldn't hold him for a while, he was mine. 100%.

 

And right now, he's climbing all over me as I type, giving me slobbery neck kisses. Strangely enough, he's definitely my most attached child out of the three of them.

Edited December 19, 2016 by MedicMom

[Sdel]

Haven't read the whole thread.   I had a 28 weeker due to preeclampsia.  The good news, they have a knack for going home very close to their due date.  DD went home the same day she would have if she were full term.

 

We were told there were a few major areas of concern for 28 weekers.  Obviously the longer they bake the less the risk of these issues.

 

1.  Brain - not much you can do about but expect baby to get a head ult to check for bleeds.

2.  Eyes - Excess oxygen causes the retinas to grow to much and causes blindness.  It's not a concern unless baby needs a lot of extra oxygen support.  

3.  Lungs/Heart - In very premature babies the PDA which shunts blood in utero from the lungs back to the heart for circulation doesn't always close (1/3 of 28 weekers).  It then has to be medically or surgically closed.  

4.  Gut - breast milk helps prevent this problem

 

If you are pumping, freeze the milk.  You'll very quickly out-pump what you'll use in the short term.  Sometimes there are issues transitioning NICU babies back to the breast, and some don't ever successfully go back and you'll want the extra from earlier.  If you aren't already aware, there are herbs and prescription meds you can take to help stimulate milk production.  

 

As far as the RMH, if it is like the one we stayed in, you were put in groups by room and each group was assigned a set of daily chores.  You are expected to clean your rooms on the way out and the RMH we stayed in was a bit of a nazi about it.  You were also given an income assessment and expected to pay on a sliding scale as you checked out.  We paid the max amount and I want to say it was around $500 for the full 45 days. We never cooked in because it never failed that someone had helped themselves to some of our groceries.  Also, you have 45 day max stay and then you have to go out for a while.

 

 

ETA:  Don't let the atmosphere keep you quiet.  If you notice something or have a concern speak up and challenge the nurse/doc.  When DD had her surgery we suggested the nurse increase her oxygen since they'd been weaning it down over the next few days (DH has lots of experience with vents).  Day nurse blew us off and the night nurse spent all night correcting DD's blood gas levels.  Then when DD was to go home, doc wanted to put in an PEG tube for feeding because DD wasn't taking a full bottle.  We thought the problem was she wasn't ever hungry enough to take a full bottle because she was being fed every three hours and by the time we did the bottle and pushed the rest through the nasal tube it was almost time again for the next feed.  Demanded he give her overnight with no tube feeding an we'd re-eval in the morning.  She went home without a tube.

 

Stefanie   

 

 

Edited December 19, 2016 by Sdel

[MinivanMom]

Another question for those who had NICU babies as subsequent children. I chose to birth my other babies in ways that ensured they'd be close to me and all of that. I realize that this baby needs different things, and I'm okay with that. But how do I handle the sense of loss and guilt for him not getting the same stuff my others got? Am I going to spend the next eighteen years trying to make up for it? I can accept that a healthy baby is the most important thing, and truly, it is, but I still have to deal with the guilt that I couldn't give him the best.

 

Also, is it possible that he might feel like a stranger to me for a while? DH and/or I caught all of our others, and they never once left my side. I was the first to touch any of them and pulled them to my chest right away, and I did all their initial blanketing, dressing, feeding, and even weighing for some of them myself. They spent their first nights snuggled against me, holding my hand. All of that is being taken away from me, and there's a strong chance I won't even get to see him for a while, much less care for or hold him. I'm afraid when I do, he will feel like someone else's baby. Is that typical?

 

For me, when he was born . . . and did not cry . . . the last thing I was thinking about was missing out on those things. I just wanted him to breathe like the other kids. I got to hold him for a moment at birth as they cut the cord and for a moment as they were packing up before they swept off to the NICU, but none of that other stuff was on my radar. It never has been. It went the way it needed to go so that he would be alive and well. I have no sense of loss. He got the care he needed just as the older kids got the care they needed. It was different, because it needed to be different. But different wasn't necessarily bad or necessarily a loss, though I did experience grief later on over the total experience. 

 

I think it's normal to feel fear over a different experience, but he will still be yours. The initial moments will be different, but when you see him and touch him . . . he is your baby. You hold them in your arms and you know, "This is my baby."  

 

I treasure my homebirth experiences. But while I enjoyed the intense bonding, I felt the same attachment to my last 2 babies who were born in very different circumstances. 

Edited January 3, 2017 by MinivanMom

[Sdel]

Oh, yeah, since you say he's behind on size.....if he's born on the early side, anyone with a birth weight below a certain weight (somewhere in the 2 lb range) is automatically qualified under SSI.  It's effective from the date you file, so, depending on how things go, look into it and get the social worker to file.

 

Stefanie

[happypamama]

My worst fear was not bonding with Caden. My others were born by c section but were never once out of my sight(we used a hospital with no nursery and all care was done at mom's bedside). Sometimes when he was in the nicu, I did feel like a bystander, a little. Honestly, though, once he came home, I was very clearly mom. -And remember, those weeks in the nicu are weeks he isn't even supposed to be here. It is likely he will come home around his due date, and for all practical purposes he will be a newborn. I took my maternity leave when Caden came home and went to bed with him, basically, for two weeks---just like I had with my others. Even though he technically wasn't, he was a newborn, and I treated him just like I'd treated my others as newborns.

 

By the way, I worried that he would feel like a stranger. But the moment I saw him and was immediately able to gently touch his head and hold his hand, all my mommy instincts kicked in. That was my baby, even if I hadn't even seen him his first two hours and couldn't hold him for a while, he was mine. 100%.

 

And right now, he's climbing all over me as I type, giving me slobbery neck kisses. Strangely enough, he's definitely my most attached child out of the three of them.

Oh, thank you!! This is so reassuring that I'll know him, even if maybe not right away.

 

I have thought about that, that when he gets home, we should treat it like the regular babymoon we would have gotten otherwise. I already planned for two weeks off of school at that time, so as long as my parents can keep schooling the kids before he gets home, we will be good on that front.

[redsquirrel]

Of course the first question I asked with ds1 was when he could go home.  I was told initially 'the due date plus 8 weeks"! I was a little freaked out.  I later found out that is more of a worse case scenario, but I understand why they say that at first. There is just so much that is unknown in those first days that they need time to make a better assessment.

 

It does depend on lungs and also if the baby can keep his heat and is gaining weight.  Then there are 'As and Bs" which are apnea and bradycardia.  My son had a terrible time with bradycardia...his heart did not want to keep going.  Every time they have an A or a B it meant 3 more days in the high level room.  There were three rooms at the NICU I was at. The first, the largest, was for babies that needed individual nurses. So, every baby had a nurse at their incubator thing at all times.  Once a baby went three days without an apnea or bradycardia then he or she is eligible to move to the level 2 room, which had more babies with two nurses, but the babies were still in the little boxes. There were other considerations, such as jaundice and other things, but there couldn't even be a discussion about moving to the other room if the baby was having As and Bs.  The third level was one nurse and maybe 8 babies and those babies were in open bed..those regular plastic tubs they  use in hospital nurseries. Those babies just need to gain weight.  The level 2 and 3 rooms were more baby friendly, in that they were kept dark and quiet. The level 1 room is super bright at all times of day and night and has buzzers and bells going off all the time.

 

Some babies moved back and forth depending on their health.

 

I should add that my son was a 'regular' preemie. There were also babies in there who were profoundly ill and had lots of other problems beyond apnea and bradycardia. Those babies weren't going anywhere anytime soon, even if they did gain weight and keep their body temperature constant. There were also other babies in there for reasons not related to premaurity who left very quickly. They would  have a baby in with jaundice who would spend a day or two under the lamps or in the blanket and then go right home.

 

There was really no privacy in the NICU. If you are a parent sitting in there you hear all kinds of medical stuff about the other babies. It's the nature of the setting. Sometimes there was an emergency with another baby and I would get told to put my baby in bed and leave quickly. You just do what they say and wait to be allowed back in.

 

The saddest to me were the babies I saw who rarely had a visitor the entire time I was there. The NICU served a large area and some mothers were too far away to easily visit their baby..those were poor mothers who didn't have a car to travel. Very often they were quite young, needing to attend school or work during the day and could only travel on weekends or evenings. The nurses really did try hard to hold those babies and give them attention, but it was difficult to find the time.

[displace]

Regarding guilt/feelings/bonding - in our case, I felt a bond but it was fragile. We had a lot of fertility and pregnancy issues, m/c, and NICU and growth issues. Plus health issues afterwards. It wasn't until DS was about two years old that I felt more comfortable about his ability to be/stay healthy. I was constantly worried about significant health problems. But I'm a natural worrier, so I may be extreme.

 

I still feel natural mommy guilt that my body led to some problems, maybe my lifestyle some too. I know intellectually it wasn't my fault but still wonder if bed rest would have helped, or a specialist earlier, or...

 

You may notice bonding being different compared with your others. DS was my first so our bond was my first.

 

Is you're having elevated BP, consider checking at home too. High blood pressure can cause problems, low thyroid, sometimes vit D, infections, etc. Make sure the specialists have checked everything possible for growth restriction. Probably most of the time nothing is found, but something like low thyroid is treatable.

Edited December 19, 2016 by displace

[displace]

ETA - re pumping every three hours.

 

Pumping is very time consuming. Set up and pumping can take at least 20-30 min. But a lot of Lactation consultants advise pumping every 2-3 hours so you can have a 4 hour break at night. The times are from beginning of one pumping session to the beginning of next. When your milk comes in, personally I recommend to overpump to keep up an overproduction as much as possible but not an unhealthy amount. Pumping is not as good as breastfeeding, but preemies cannot breastfeed effectively so they don't do a good job stimulating milk production. If you have oversupply for a while, when your milk production naturally drops because of a preemie, your supply will still be sufficient. It's better to have too much than not enough. Just remember with an oversupply you have to be careful to express so you don't get infections.

Edited December 19, 2016 by displace

[happypamama]

It does depend on lungs

 

 

Yeah, his issue isn't even lung maturity/development per se, like with most preemies; it's more than only that. The steroids can't make up for no fluid. But I think that will be apparent pretty quickly either way.

 

The saddest to me were the babies I saw who rarely had a visitor the entire time I was there. The NICU served a large area and some mothers were too far away to easily visit their baby..those were poor mothers who didn't have a car to travel. Very often they were quite young, needing to attend school or work during the day and could only travel on weekends or evenings. The nurses really did try hard to hold those babies and give them attention, but it was difficult to find the time.

Oh, that's so heartbreaking. I've always wanted to be a volunteer baby rocker in the hospital when my kids are grown. Yes, I do realize that my baby and I are very blessed that we can make it work. I will, my health and energy permitting, be able to be with my baby a lot, and DH will be too. I wish everyone could have that.

[happypamama]

Regarding guilt/feelings/bonding - in our case, I felt a bond but it was fragile. We had a lot of fertility and pregnancy issues, m/c, and NICU and growth issues. Plus health issues afterwardsz. It wasn't until DS was about two years old that I felt more comfortable about his ability to be/stay healthy. I was constantly worried about significant health problems. But I'm a natural worrier, so I may be extreme.

 

I still feel natural mommy guilt that my body led to some problems, maybe my lifestyle some too. I know intellectually it wasn't my fault but still wonder if bed rest would have helped, or a specialist earlier, or...

 

You may notice bonding being different compared with your others. DS was my first so our bond was my first.

 

Yes, I understand those feelings. I hope they will not last long. (((Hugs))) -- it sounds so hard.

 

Is you're having elevated BP, consider checking at home too. High blood pressure can cause problems, low thyroid, sometimes vit D, infections, etc. Make sure the specialists have checked everything possible for growth restriction. Probably most of the time nothing is found, but something like low thyroid is treatable.

I have an auto BP cuff already so before I went home, I asked if I should use it. The MFM's eyes lit up, and she said that would be a great idea. So I'm supposed to check it twice a day and bring those readings with me. If it goes over 150/90, I'm supposed to call them. The exception is if it's high and right about time for my meds, I should take it again two hours after meds and call only if it's still high. So far, so good. They will check thyroid and glucose and all too.

Edited December 19, 2016 by happypamama

[happypamama]

ETA - re pumping every three hours.

 

Pumping is very time consuming. Set up and pumping can take at least 20-30 min. But a lot of Lactation consultants advise pumping every 2-3 hours so you can have a 4 hour break at night. The times are from beginning of one pumping session to the beginning of next. When your milk comes in, personally I recommend to overpump to keep up an overproduction as much as possible but not an unhealthy amount. Pumping is not as good as breastfeeding, but preemies cannot breastfeed effectively so they don't do a good job stimulating milk production. If you have oversupply for a while, when your milk production naturally drops because of a preemie, your supply will still be sufficient. It's better to have too much than not enough. Just remember with an oversupply you have to be careful to express so you don't get infections.

This is good. I tend toward oversupply early on -- glad to know it might actually be helpful! I do know about herbal remedies to boost supply as well and will get them if need be. I'll ask to see their lactation consultant too.

 

I will discuss with DH needing to pump every 2-3 hours. We will make it work.

[Maplecat]

You've gotten some great advice. I found having multiple sets of pumping parts was very important. When you are pumping for a preemie, they don't want you to refrigerate and reuse one set. By having four or five sets, I could wash twice a day instead of after every pumping session. The hospital will provide you with your first kit and you can buy more from them, but I found them cheaper on line. Since there are only three companies that make hospital grade pumps, I'd call the NICU or Labor and Delivery ahead of time and find out. Buying a hands-free pumping bra will also be a game changer. Wishing you and your little one all of the best. I hope your NICU time is short and uneventful.

[Lawyer&Mom]

Absolutely get multiple pumping sets. The hospital used the same brand as I had used with my first kid so I already owned several sets. Find out the brand and get yourself set up. The hospital will provide bottles and caps to actually pump into. These are single use only for the NICU.

 

I should have been more clear about formula. They actually added it to my breast milk to increase the calories. It was a mix. Even when she got home I still had to pump and add formula and feed from a bottle for a certain number of feedings until she hit a weight target. You will want to rent a hospital grade pump for when you get home unless if you still need to pump at that time.

 

Bonding. It was different. Part of it was just the kid. Dd2 was just less familiar than Dd1 (my mini-me). Timing had nothing to do with that. But the trauma of the birth and the NICU was also part of it. When I brought her home Sometimes I felt like I was babysitting. A wonderful gorgeous delightful baby, but was she mine? I decided to "fake it" until I made it, and just act like I knew she was my girl. (Why not?) I can tell you definitively that at 16 months I am completely utterly attached to my preemie. It just took time. So don't panic if you do have a different bonding process than you did with your other kids. The end result will be the same.

[scoutingmom]

 

 

Scoutingmom, that sounds especially hard when even the NICU protocol turned out differently than you'd expected. :(

 

 

Well, we hadn't expected to need the NICU at all... So after the birth it was suddenly all commotion around me. I only got to hold him at all before they took him because of the delay while they got the enclosure to wheel him there... and I think also because they were just deciding about the quarantine. If he had been born another 15 minutes or so later, he would have been sent to the other hospital... He was the last let into the NICU for about 4 days... And as mentioned, he was in their triage room with his own nurses. He was huge compared to the other NICU babies, although I never saw them.

 

It was hard on his older half siblings though because they couldn't see him for days. For dh and me out just meant gowns, masks, scrubbing etc.

 

My 2 me also end up in NICU but that wasn't nearly so bad... She didn't go until almost a day old. She "turned blue" while in the nursery while I was showing. She had to stay a few days as they were growing a culture as a part of their investigation. She was definitely huge compared to the others in there.

 

My

 

 

 

Sent from my SM-T530NU using Tapatalk

[Insertcreativenamehere]

Just another bit of advice: remember your goal - to take a healthy baby home. When DS was rushed to the NICU I remember my MIL being aghast that he might be have to be bottle-fed because that would make it harder for him to nurse later on. I remember thinking that even though I am totally pro-nursing and nursed my other kids into toddlerhood, all I cared about is that he came home healthy. Bottles vs nursing - it ultimately didn't matter. Now as it turned out, he needed a feeding tube long-term and in fact is still tube-fed at almost 5 years old because of his medical complexities. But he's healthy and happy and growing and learning - and that's what is really important! Now I hope you won't have to delve into realm of complex medical issues, but I share this only to gently let you know that there are things that may not go as you'd ideally like, but if it helps your little guy grow and come home healthy, it's all worth it!

 

 

Sent from my iPhone using Tapatalk

[chocolate-chip chooky]

Another question for those who had NICU babies as subsequent children. I chose to birth my other babies in ways that ensured they'd be close to me and all of that. I realize that this baby needs different things, and I'm okay with that. But how do I handle the sense of loss and guilt for him not getting the same stuff my others got? Am I going to spend the next eighteen years trying to make up for it? I can accept that a healthy baby is the most important thing, and truly, it is, but I still have to deal with the guilt that I couldn't give him the best.

 

Also, is it possible that he might feel like a stranger to me for a while? DH and/or I caught all of our others, and they never once left my side. I was the first to touch any of them and pulled them to my chest right away, and I did all their initial blanketing, dressing, feeding, and even weighing for some of them myself. They spent their first nights snuggled against me, holding my hand. All of that is being taken away from me, and there's a strong chance I won't even get to see him for a while, much less care for or hold him. I'm afraid when I do, he will feel like someone else's baby. Is that typical?

 

One of my children spent her first 4 months in NICU and SCN, then 3 months at home and then a further 15 months in PICU. She was nearly 2 years old when we finally had her home for good (and even then we had to share our home with nursing staff for another 3 years). 

 

I understand 100% what you're feeling. I always worried that I wasn't able to be the mum I had been for my older child eg co-sleeping, longterm breastfeeding.

My second child's life experience was so, so different.

 

The reality is that we do the absolute best we can with the situation we're presented with. Our children will feel and know our love. And every experience has its positives, for both the family and the child. Yes, the experience will be different, but you'll adjust quickly.

 

My sickly young child is now 20 years old and we have a lovely, warm relationship.

 

Your love for this child is obvious to all of us. It will be obvious to your child too.

 

I'm thinking of you often and I wish you all the best.

[chocolate-chip chooky]

I'll also add that I found comfort in knowledge. 

When our child is separate from us, and someone else is doing all of the care that we expected to do, we can feel out of control. To help me feel a bit more in control, I asked endless questions of the doctors and nurses and learnt early how to do some of the care. I wanted to know what every number on the monitor meant, what every blip and bleep meant, what every bit of medi-speak jargon meant.

 

Pumping breastmilk also helped me feel some control of the situation. That was the one thing that only I could do. And I did it with gusto!

It is hard to keep a supply going when there isn't a child suckling, so it is good to know that ahead of time so that your expectations are realistic. I managed to stretch it out for 8 months, but it was supplemented by formula for most of that time and sometimes it was only a dribble. That was just the reality of the situation. But I know I did my absolute best for as long as I could.

 

One last thing - if you don't stay in the Ronald McDonald house, you may end up with horrific parking expenses. We saw a social worker at our hospital and got free parking for those couple of years. It was one less stress each day.

[Debbi in Texas]

I haven't read the entire thread, but I had a 37 week pregnancy with placenta problems. I had a stress test every week for the last three weeks and non-stress twice a week. My son weighed 3 pounds 4 ounces and was in the hospital for 17 days. He did not have to be in NICU, however. He was in a "Level two" nursery for one night, then a regular nursery thereafter.

 

I concur with everyone else about the pumping. Pretend you were born to pump, and it hurt all the way down to my toes.(Sorry) I remember having to keep meticulous records of diapers and cc's taken in at feeding. My son was fed every two hours around the clock and they had to check his blood oxygen level each time. :(

 

The babies were weighed at midnight and I could call and find out his weight. You and your little one are in my prayers.

[chocolate-chip chooky]

Oh yes, and pumping makes your nipples long and stretched. So at least there's some comic relief.

[happypamama]

Bonding. It was different. Part of it was just the kid. Dd2 was just less familiar than Dd1 (my mini-me). Timing had nothing to do with that. But the trauma of the birth and the NICU was also part of it. When I brought her home Sometimes I felt like I was babysitting. A wonderful gorgeous delightful baby, but was she mine? I decided to "fake it" until I made it, and just act like I knew she was my girl. (Why not?) I can tell you definitively that at 16 months I am completely utterly attached to my preemie. It just took time. So don't panic if you do have a different bonding process than you did with your other kids. The end result will be the same.

Thank you for this honesty. It's a relief to read. My fourth child arrived unexpectedly at 38.5 weeks after a really fast labor and birth. I wouldn't say we had trouble, exactly, with bonding, but I was just SO shell-shocked. In my previous experiences, going past 40 weeks was always part of the emotional experience, the praying for patience and talking to the baby and deeper self examination to see if I had any mental hangups or fears, so to have the early baby just felt strange (and he was so much littler). But I knew if I just did all the right stuff and kept him tucked up against me and all, the feelings would fade, and they did. Very quickly the shock faded, and all felt normal again. You're giving me hope that even if things feel odd this time, they'll change.

 

Okay, I need to schedule an appointment with the NICU's lactation consultant after Christmas. This whole pumping thing is completely overwhelming. She should be able to help me clarify everything, figure out what insurance covers, etc. I'm a very experienced breastfeeder, but I also know nothing about how and when the reflexes develop because I've never had to consider it, and that may help me decide what I want to do if we get to 34-36 weeks and things still look good. The more info I have, the better I can make wise decisions.

[happypamama]

Just another bit of advice: remember your goal - to take a healthy baby home. When DS was rushed to the NICU I remember my MIL being aghast that he might be have to be bottle-fed because that would make it harder for him to nurse later on. I remember thinking that even though I am totally pro-nursing and nursed my other kids into toddlerhood, all I cared about is that he came home healthy. Bottles vs nursing - it ultimately didn't matter. Now as it turned out, he needed a feeding tube long-term and in fact is still tube-fed at almost 5 years old because of his medical complexities. But he's healthy and happy and growing and learning - and that's what is really important! Now I hope you won't have to delve into realm of complex medical issues, but I share this only to gently let you know that there are things that may not go as you'd ideally like, but if it helps your little guy grow and come home healthy, it's all worth it!

 

 

Sent from my iPhone using Tapatalk

I appreciate this. Yes, it's really hard not to be angry about some of it, but I do understand that some of it may be necessary. I'm really trying to be okay with it because I need to be, but I'm pretty sure I'm going to lose it at some point. That may just be inevitable.

 

I've seen more doctors in the last week than in the past fifteen years. I love the doctors but hate that I need them. But they're keeping my baby healthy and keeping me healthy, and I am okay with that.

[happypamama]

I understand 100% what you're feeling. I always worried that I wasn't able to be the mum I had been for my older child eg co-sleeping, longterm breastfeeding.

My second child's life experience was so, so different.

 

The reality is that we do the absolute best we can with the situation we're presented with. Our children will feel and know our love. And every experience has its positives, for both the family and the child. Yes, the experience will be different, but you'll adjust quickly.

 

My sickly young child is now 20 years old and we have a lovely, warm relationship.

 

Your love for this child is obvious to all of us. It will be obvious to your child too.

 

I'm thinking of you often and I wish you all the best.

Thank you! This is beautiful and reassuring to read. At least the one benefit to all of this is that I will see him every week on the ultrasound, so maybe that will help me know him a little. (If nothing else, it's that much more of him I will have if we don't have him long. I never found out gender before, but I'm glad to know now, just in case. I will knit him a blue sweater, in case it's the only thing I ever get to make him.)

[happypamama]

I'll also add that I found comfort in knowledge.

When our child is separate from us, and someone else is doing all of the care that we expected to do, we can feel out of control. To help me feel a bit more in control, I asked endless questions of the doctors and nurses and learnt early how to do some of the care. I wanted to know what every number on the monitor meant, what every blip and bleep meant, what every bit of medi-speak jargon meant.

 

Yes, I am finding this to be very true. I'm reading like crazy, although I try to stay away from studies that talk about outcomes. I can't tell you all how incredibly helpful this thread is to my sense of calm and control. I feel like I got this.

 

One last thing - if you don't stay in the Ronald McDonald house, you may end up with horrific parking expenses. We saw a social worker at our hospital and got free parking for those couple of years. It was one less stress each day.

That is just wrong that parents of sick children would not automatically get free parking!!! Thankfully, there are no parking fees at Hershey at all, which is a big relief. It's about the same distance from home as DH's commute to work too, so if he's working from home/hospital, we should be able to absorb the gas costs pretty well too. So our biggest expense should be food up there.

[luuknam]

I did get the steroids for his lungs. I just spent two nights in the hospital because my blood pressure spiked

 

Steroids can cause an increase in blood pressure.

 

My personal experience is very limited, as I was the parent of the healthiest kid in the NICU... The day after my youngest was born (c-section the day before his scheduled c-section, 8lbs something ounces, good Apgar score too, iirc), the hospital staff said he was turning blue every time they'd tried feeding him, so they suspected some sort of problem (small hole connecting windpipe and esophagus or something). So, they called a children's hospital to whisk him off to their NICU, where they were unable to replicate the problem. I left the hospital against medical advice to go to the NICU in the other hospital as well (even stopped at Walmart on the way to grab some stuff to eat/drink... so, the upside of a planned NICU stay is you won't be wandering around Walmart against medical advice on the way to another hospital).

 

The NICU was mostly good, they had a visitor's room they let me spend the night in. Anyway, I wanted to mention that one nurse was not-so-great. She criticized me for holding my baby too much (and really, I wasn't holding him that much), that it'd spoil the baby. So, while it seems everyone else has shared stories about great nurses, it is possible you'll encounter one that's not so great. So, obviously feel free to ignore opinionated BS if you encounter any (of course, with a less healthy kid, if they tell you the kid can't physically handle to be held that much, it's a different story).

 

Good luck.

[happypamama]

I haven't read the entire thread, but I had a 37 week pregnancy with placenta problems. I had a stress test every week for the last three weeks and non-stress twice a week.

 

Egads. That's a lot of appointments! They do have a satellite office that is a little bit closer to home, so I might be able to use that some.

 

I concur with everyone else about the pumping. Pretend you were born to pump, and it hurt all the way down to my toes.(Sorry)

 

Ugh. Here's hoping it's not so bad! Lol on the long skinny nipples though.

Edited December 20, 2016 by happypamama

[TheReader]

I keep coming back and reading more; there is so much good advice.

 

I want to add to please ask the hospital about memorial photo and hand/footprint options, just in case you end up needing that. There is a non-profit organization that does this for free, though I am drawing a blank on the name of it right now. The hospital may have someone they work with, though.

 

I so very much hope and pray you don't need this, but I did want to mention it, just in case. I am praying for all of you, and your precious little boy's health and development.

 

I also want to add, be prepared for a very up and down experience. The path through the NICU is not a straight line, but more of a roller coaster. Weight will fluctuate up and down. Oxygen stats (how much he is on, and via what means) will likely fluctuate up and down. It can be incredibly scary to have what feels like backwards steps, but know it is normal. If he develops jaundice (pretty likely), you may be limited on holding him during that time, because he'll have to be under UV lights. Depending on his oxygen situation, it may be a few days before you can hold him as well, though they should let you touch him.

 

That can impact the bonding on your end....it can be very disconcerting to touch or finally get to hold your baby and have alarms go off (the airway is more fragile, so positioning is a little different, and there will be tubes and wires to be careful of). It can feel very....discouraging? It hurts, some, feeling as though you can't even hold your baby without him reacting. You'll get the hang of it, and by the time he comes home, it will be second nature, but should you experience any of that,it is very normal.

 

In the end, when your baby boy comes home, you will love him so fiercely. For us, it almost bonded us to our littlest more than the older kids, the fierce protectiveness that comes from praying a child through such an experience. Even with the limited time I had with my youngest while he was in the NICU, he quickly became the child closest to me, where the older boys gravitated to my husband, he was and is mine, through and through. Of course he loves his father too, but he and I do have a special bond.

 

I never faced the situation you have, and I cannot imagine it, but will pray continually. I wish I could sit and hug you, show you pictures of my little boy from NICU to now, and just chat over hot cocoa about all of this. It can feel overwhelming, but just keep breathing, take your time, take things day by day.

[Lawyer&Mom]

Thank you for this honesty. It's a relief to read. My fourth child arrived unexpectedly at 38.5 weeks after a really fast labor and birth. I wouldn't say we had trouble, exactly, with bonding, but I was just SO shell-shocked. In my previous experiences, going past 40 weeks was always part of the emotional experience, the praying for patience and talking to the baby and deeper self examination to see if I had any mental hangups or fears, so to have the early baby just felt strange (and he was so much littler). But I knew if I just did all the right stuff and kept him tucked up against me and all, the feelings would fade, and they did. Very quickly the shock faded, and all felt normal again. You're giving me hope that even if things feel odd this time, they'll change.

 

.

Thank your for giving me an opportunity to share. For the longest time I've wanted to have a "hey, anyone else not bond right away with their baby" thread without it being weird. I figure I can't be the only one, but it's not something you really want to bring up.

 

Pumping trick: Video. Ten seconds on your phone of your baby crying. Replay as needed. Ten seconds of cooing is nice too one the milk gets flowing.

[TheReader]

Egads. That's a lot of appointments! They do have a satellite office that is a little bit closer to home, so I might be able to use that some.

 

 

Ugh. Here's hoping it's not so bad! Lol on the long skinny nipples though.

I didn't find the pumping to be too bad at all. It may be fine. It is a tight suction, and there's definitely a different feel than nursing, but I wouldn't say it hurt all the way to my toes.

[redsquirrel]

pumping and bottle feeding etc are going to differ from NICU to NICU.  For example, ds1's first feedings, for over week were my pumped milk that was slowly squirted into a tube that went up his nose, down his throat and into his stomach. Then after a certain amount of time the syringe would be used to remove the partially digested food from his stomach (sucking it up the same tube it went down) and then measured and it's state of digestion noted and then quickly squished back down into his stomach.  That was part of how they tracked if he was even digesting his food and how quickly it was moving through his system. I was allowed to push the little syringe to feed him when I was there.

 

He moved from being fed via NG tube and went to either nursing or a bottle. I never saw him getting a bottle by mouth. Not once. If I was there I was allowed to nurse him. He was able to nurse at will when I was there, but was given a bottle of my expressed milk at night.  I was told that I was free to refuse that he be bottle fed. The nurses would finger feed him if I wanted it done that way.  He was doing very well at nursing and latched on perfectly, even doing some rooting. So, I wasn't too worried about him getting a couple bottles at night. I was there for over 12 hours a day and was able to nurse him plenty. Plus, I couldn't imagine making the nurses do that, it takes so long. But I know that some parents did request it.

 

When I wasn't there they did mix the breastmilk booster into the bottles, but I wasn't expected to continue it when he came home.

 

So, everyone is going to have a different experience.

 

Oh, and when he was in the hospital they gave me these teensy little bottles filled with sterile water. I was to break the seal, dump out the water and pump directly into those bottles. They held 2 oz and could go in the freezer.  A year later, I was put in contact with another family with a baby in the same NICU and the hospital was now charging families for those little bottles. They were labeled with a formula brand, I can't remember which one, but the family was very stressed that they had to pay for the bottles they had to use for formula storage

Edited December 20, 2016 by redsquirrel

[Insertcreativenamehere]

Yes, I am finding this to be very true. I'm reading like crazy, although I try to stay away from studies that talk about outcomes. I can't tell you all how incredibly helpful this thread is to my sense of calm and control. I feel like I got this.

 

 

That is just wrong that parents of sick children would not automatically get free parking!!! Thankfully, there are no parking fees at Hershey at all, which is a big relief. It's about the same distance from home as DH's commute to work too, so if he's working from home/hospital, we should be able to absorb the gas costs pretty well too. So our biggest expense should be food up there.

  

Be sure you talk to a social worker about parking AND meals. At our hospital, pumping moms could get vouchers for free cafeteria meals for the duration of their child's hospital stay. The Ronald McDonald House also had free meals most evenings and a fully stocked pantry and kitchen for preparing one's own breakfast or lunch. 

[chocolate-chip chooky]

Yes, I am finding this to be very true. I'm reading like crazy, although I try to stay away from studies that talk about outcomes. I can't tell you all how incredibly helpful this thread is to my sense of calm and control. I feel like I got this.

 

 

That is just wrong that parents of sick children would not automatically get free parking!!! Thankfully, there are no parking fees at Hershey at all, which is a big relief. It's about the same distance from home as DH's commute to work too, so if he's working from home/hospital, we should be able to absorb the gas costs pretty well too. So our biggest expense should be food up there.

 

We also got vouchers to use the staff meal hall ie free food.

We were very longterm, so I don't know how common this would be. But it saved us heaps of money over that time.

[Guest]

In the end, when your baby boy comes home, you will love him so fiercely. For us, it almost bonded us to our littlest more than the older kids, the fierce protectiveness that comes from praying a child through such an experience. Even with the limited time I had with my youngest while he was in the NICU, he quickly became the child closest to me, where the older boys gravitated to my husband, he was and is mine, through and through. Of course he loves his father too, but he and I do have a special bond.

This was my experience with my youngest, who was born after my third child died at birth. Youngest was a high risk pregnancy and I had injections for blood thinner and a billion appointments and a scary last few weeks and an emergency early induction - it was like, this child is so hard-won. I loved him so ferociously. I cared for him as though he was the last human alive and I needed to save the legacy of humankind, lol! With my first two, I took it for granted that they were alive and healthy, but after losing one, I could never take that for granted again.