Jump to content

Menu

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


happypamama
 Share

Recommended Posts

DD was born at 27 weeks and spent 2 1/2 months in the NICU. DS was born at 25 weeks and spent  6 1/2 weeks in the NICU.  We learned a lot.  One thing that we learned was that Dad's can do kangaroo care too.  The babies loved kangaroo care with Daddy and it gave them bonding time. 

 

 

  • Like 3
Link to comment
Share on other sites

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?

DS14 inhaled meconium at birth. With very serious faces, the midwife and nurse showed him to me for about 2 seconds after he was born and whisked him away to the NICU. The nurse quickly tended to me for a few minutes then left. I sat there in the delivery room completely alone for about an hour after he was born. I had pretty much no clue what was going on. Dh was in the NICU with DS14.

 

I didn't touch him at all for many, many hours--and then it was just my hand on his back-which set the alarms beeping and I had to stop. I didn't hold him for a day or so. He was hooked up to a billion machines that all beeped nonstop and set off alarms if you looked at them wrong. Holding him was like holding an octopus with wires for legs that all set off alarms when they jostled.

 

He was being stuck with needles a few times a day which made him miserable. He had to lie in a hooded box to get oxygen with a little Darth Vader mask on. I didn't give him his first bath. I didn't give him his first bottle (had to pump for a bit before he could come out of his breathing apparatuses.). Didn't do his first swaddle. None of that.

 

The second I saw him, though, I felt a bond like nothing I'd ever experienced--firstborn so I wasn't prepared for the LOVE. And when I touched him, there was no holding back. I honestly believed he was the most beautiful baby in the world and was so surprised that a baby could be beautiful (until then, they all seemed a little creepy looking to me.). Besotted.

 

You know DS14 and me. We're are sooo bonded! This is a 14 year old boy who almost never rolls his eyes at me or flounces away (well, sometimes there is a flounce) and listens to me and laughs at my jokes and mostly does what he's told when he's not being spacey. We've never not been bonded even though I got to hold him so rarely for those first few days.

 

There are no guarantees, but I don't think that you'll have trouble with bonding, knowing you and how you love your kids.

 

ETA: Wait...the midwife must have been the one to stay with me and tend to me before everyone left. She handed DS14 off to someone who left the room and DH went with them, while the midwife stayed.

Edited by Garga
  • Like 7
Link to comment
Share on other sites

You know DS14 and me. We're are sooo bonded! This is a 14 year old boy who almost never rolls his eyes at me or flounces away (well, sometimes there is a founce) and listens to me and laughs at my jokes and mostly does what he's told when he's not being spacey. We've never not been bonded even though I got to hold him so rarely for those first few days.

 

There are no guarantees, but I don't think that you'll have trouble with bonding, knowing you and how you love your kids.

Oh my goodness, now I'm all teary again. I do know you and your DS14. I see how much you adore him; you'd never know you'd been separated at birth. I'm so relieved, truly, because I know you, and I can see that it doesn't affect your bond. Thank you so much. And how scary and sad that must have been for you!!

 

I assume my DH is okay with leaving me to stay with the baby. I've always told him in case of transfer that I want him to stay with the baby. He's never protested, so either he's okay with it or goes along with it because I insist so strongly. But he always just follows my lead with the babies, so I don't know how he'll feel about being the primary parent at first. This time, if the baby needs to come soon, he can't tolerate labor, so it'll need to, per the MFM's orders, be a classical c-section if he's still breech because his head is bigger than his abdomen, and if it's soon, there's a good chance he won't live long. DH may be the only one with him if he doesn't last long, and that's going to be really hard on DH (as well as on me but differently).

 

Here's hoping none of this comes to pass, and that ten weeks from now we're debating induction vs. waiting. But thank you! He's got so many people loving and praying for him from all over the world; I'm grateful for every single one.

  • Like 5
Link to comment
Share on other sites

Only a couple of things to add that may have changed since my NICU baby is now 18. She was born with meconium aspiration and pretty sick to the point we were told she might not make it. She was wisked away by helicopter a few hours after her birth because she needed a higher level of care than the hospital I was at could give her. I had a c-section so I couldn't get to her for a few days. That was really hard. I also wasn't prepared for not being allowed to hold her or even touch her once I did arrive. With very sick babies any stimulation can cause them to crash so they tried to move her as little as possible. All I could do was go in and look at her. It was so hard to not touch her. I just wanted to pick her up and hold her.

 

I also wasn't prepared for all the wires and tubes and the noises that came with all the machines that surrounded her isolate. Alarms kept going off and I would panic thinking she was going to draw her last breath any minute. Sometimes the nurses would come running but other times the alarm would go off to let them know a new IV bag was needed.  Try and find out what the different alarms mean. It will save you a lot of panic attacks.

 

Last to add is to be prepared if your baby is on steroids that it may cause them to retain water. My dh and I laugh at it now but at the time neither of us new this and thought we had an ugly baby. Once her lungs were healing they started giving her diuretics and she looked so different within 24 hours it was amazing. My dh and I just stood their claiming how beautiful she was. That was when we both admitted what we had been thinking about her looks. We realized then that the water retention had caused her features to be out of proportion.

 

You may be in for a trial but you will get through it with the help of family, friends and great nurses and doctors. Our little girl is a beautiful, happy and healthy young woman now despite her rough start in life and she was pumped full of steroids, antibiotics and who knows what else and was tube fed for two weeks but took off nursing like a champ once she had the opportunity.

 

  • Like 2
Link to comment
Share on other sites

 

 

DS14 inhaled meconium at birth. With very serious faces, the midwife and nurse showed him to me for about 2 seconds after he was born and whisked him away to the NICU. The nurse quickly tended to me for a few minutes then left. I sat there in the delivery room completely alone for about an hour after he was born. I had pretty much no clue what was going on. Dh was in the NICU with DS14.

 

I didn't touch him at all for many, many hours

 

[/endquote]

 

This was so similar to my experience. Apparently DS had inhaled meconium at birth but the main thing I knew was that he was unresponsive with a low Apgar. I had tore a bit so they were working on me while they were working on him. He would have been gone to the NICU so fast except for the unexpected delay I mentioned earlier, and I was able to hold him for maybe 30 seconds. It was all so scary because I didn't know if I would see him alive again.

 

But worse... I had been on prescription medication during the pregnancy, that was in the category of not proceed safe during pregnancy, but considered at times to be safer than the mother not taking it. The doctors felt it was worth the risk. I want so sure, but I agreed to a lower dosage. It was also felt likely to be safe for breastfeeding (I had done my research) but not guaranteed. So when he was born they thought the problems might have been due to the medications. So I was also feeling absolutely horrible about everything. They also let me pump and store, but would not let the milk be used for a couple of days while they decide what the problem was. They eventually said ok to the breastfeeding... But never told me what had happened.... It was during my next pregnancy that I found out the cause.

 

I don't remember many details, which is funny in a way. He was all alone with 2 nurses... And not that much equipment.

 

I love him so much I think right off, but I was feeling so much guilt and grief as well as being so tired, and my dh was encouraging me to rest while I could too.... And honestly it is like I have no timeframe for how long he was in NICU. I think it was 5 or 6 days maybe, but it might have been 3 or 4 or 10 or 12..... I have no clue. Maybe that is something else? Maybe for some people the time just stops of something?

 

I don't know if this helps you (op )or not... But it just seems like something you just don't talk about much to people.

 

Although my husband spent the time he could in NICU (he had to work plus other kids at home), he had NEVER heard his son cry until we had left the hospital.... I had gone with him from the hospital to work, and stayed to feed ds before driving home. My dh was working in another room when he heard him cry and came to see him cry.

 

Sent from my SM-T530NU using Tapatalk

  • Like 1
Link to comment
Share on other sites

NICU doctors rotate through the unit. Don't be surprised if they change every week, two weeks, or month. It can be jarring to get used to a doctor and then they change. Someone mentioned upthread that you can ask for a different doctor. I would not assume that's true. If they have one neonatologist covering the whole unit for two weeks, what other doctor would you even ask for? I guess if you have super problems you can ask, but it may not be a quick fix.

 

They move babies around a lot. Very young and critical babies usually stay in one place for a while. Once they are stable they may get shifted depending on staffing or space.

  • Like 2
Link to comment
Share on other sites

ITA with the feelings of fierce protection. Though my bond was different with DS probably, I am a mother bear with him. I defend him and protect him. These kids need that, I think.

 

When the end of NICU stay comes, for discharge it may be sudden: you find out one day they will discharge the next day.

 

I hope the placenta holds up and your baby stays inside longer, and is able to grow. They will hold off as long as possible. But if the growth continues to deteriorate they will deliver. At that time they've already waited as long as possible.

 

This may not be applicable, but if you decide to get pregnant in the future, you will need a MFM specialist from the beginning, and probably before conceiving. Any future pregnancy should be hyper monitored, even if there are no known problems.

Edited by displace
  • Like 2
Link to comment
Share on other sites

ITA with the feelings of fierce protection. Though my bond was different with DS probably, I am a mother bear with him. I defend him and protect him. These kids need that, I think.

 

I'm quite a mama bear anyway, so I rather expect that I will be this time as well. I am slightly concerned that he's never going to be able to do any wrong and will get away with everything because he's probably going to be the last one anyway, plus all of this worry. ;)

 

I hope the placenta holds up and your baby stays inside longer, and is able to grow. They will hold of as long as possible. But if the growth continues to deteriorate they will deliver. At that time they've already waited as long as possible.

 

This is exactly what they told us as well. They offered us delivery or even full time hospital monitoring right away, but they didn't push it and didn't feel that either would really make a difference in outcome at that point. They're just watching all signs and will deliver at whatever point things look bad, and NICU will do its best with what they've got. We asked how much advance warning the tests were giving them (like, if the placenta looks okay one day, how likely is it that it'll fail 24 hours later?), and they said that it's not probably super immediate, but that it might indicate a few days left. So that was actually reassuring. They did show us where the level on the u/s of placental function was and where it would need to be for them to be worried, and they said it wasn't at all close yet. We're okay with it all. Really hoping to get to 30-something weeks but understanding what's in their heads and why we might not.

This may not be applicable, but if you decide to get pregnant in the future, you will need a MFM specialist from the beginning, and probably before conceiving. Any future pregnancy should be hyper monitored, even if there are no known problems.

They were very up front about that, including that if they do a classical c-section, they will insist that future pregnancies would also be classical c-sections at 36 weeks. I didn't like that, but I really appreciated that they put it all on the table for us so we'd have it all in our heads. Now, I'm almost 40, and this is our sixth, so if he survives, I'm not sure we'd try for another one (not sure DH can handle that), but who knows what could happen? I do probably have more fertile years left. But that's part of why we went ahead and got genetic testing and such done, because it helps us to know what is specific to this baby and unlikely to repeat itself and what is me. We will probably have a good talk with them about what to expect if we were to try again.
Link to comment
Share on other sites

Clothes: nothing I have is going to fit this baby even if he gets to 34-36 weeks. I don't want to buy him a lot, but I want to have a couple of things for him in case he arrives soon. I gather that a really tiny preemie (right now he weighs about a pound) just wears a diaper for a while? Do those super tiny babies need caps or booties?

 

I need to check with NICU, but at whatever point he graduates to real clothes, what did you/your hospitals find to work best? Usually I like onesies and one-piece cotton sleepers, but maybe those don't work as well for tubes and wires and all? I'd like to have a couple of preemie outfits (under 5 pounds) and then a couple of newborn outfits (the 5-8 range) ready for him whenever he can wear them. My other newborn stuff starts at like 7-8 pounds and up.

 

Oh darn, I just realized that he's probably not going to be able to wear the little white sleeper my mom gave me at my baby shower for my first. All of my babies have gotten their own first outfit, but the very first night, they've all worn that sleeper. He probably won't fit in it. :(. Sigh. The first of many traditions he's likely not to get. This is hard.

Link to comment
Share on other sites

ITA with the feelings of fierce protection. Though my bond was different with DS probably, I am a mother bear with him. I defend him and protect him. These kids need that, I think.

 

When the end of NICU stay comes, for discharge it may be sudden: you find out one day they will discharge the next day.

 

I hope the placenta holds up and your baby stays inside longer, and is able to grow. They will hold of as long as possible. But if the growth continues to deteriorate they will deliver. At that time they've already waited as long as possible.

 

This may not be applicable, but if you decide to get pregnant in the future, you will need a MFM specialist from the beginning, and probably before conceiving. Any future pregnancy should be hyper monitored, even if there are no known problems.

I was given a day for discharge, and then the nicu called a few days before and said I could take him home as soon as I could get there.

Best. Day. Ever.

 

We also prepared for a baby who might not make it through birth. I did have tentative funeral arrangements and things prepared for that, because I knew if the worst happened I did not want to be trying to plan in the middle of my grief.

Edited by MedicMom
  • Like 2
Link to comment
Share on other sites

Clothes: nothing I have is going to fit this baby even if he gets to 34-36 weeks. I don't want to buy him a lot, but I want to have a couple of things for him in case he arrives soon. I gather that a really tiny preemie (right now he weighs about a pound) just wears a diaper for a while? Do those super tiny babies need caps or booties?

 

I need to check with NICU, but at whatever point he graduates to real clothes, what did you/your hospitals find to work best? Usually I like onesies and one-piece cotton sleepers, but maybe those don't work as well for tubes and wires and all? I'd like to have a couple of preemie outfits (under 5 pounds) and then a couple of newborn outfits (the 5-8 range) ready for him whenever he can wear them. My other newborn stuff starts at like 7-8 pounds and up.

 

Oh darn, I just realized that he's probably not going to be able to wear the little white sleeper my mom gave me at my baby shower for my first. All of my babies have gotten their own first outfit, but the very first night, they've all worn that sleeper. He probably won't fit in it. :(. Sigh. The first of many traditions he's likely not to get. This is hard.

They will have him in just a diaper for a while, yes. He will be in a warmer, so won't need a cap right away, but most NICU's have them for the preemies, and sometimes they even have homemade ones people have made and donated.

 

Gowns, or those criss cross shirts that snap at the shoulder are good, onesies are okay. I would not think footed sleeper for in the NICU, too complicated with wires, IVs, etc. He will very likely have stuff in many places.

 

We took some clothes up for our son, I think not until he had stepped down a level, but even at that we'd arrive at the hospital and he'd be back in just a diaper, if whatever he had there had gotten dirty or wet, or was too complicated for checking on him all the time.

 

And maybe he can wear the special sleeper when he comes home...maybe not for his drive home, if you want to get him an outfit for that, but for his first night sleeping at home. Then it is still a special night, still included in the tradition, just different. (((((Huge hugs))))))

  • Like 3
Link to comment
Share on other sites

On the clothes, I don't remember them wearing anything more than a shirt with the snaps and diaper while in the hospital.  (oh and yes, the hospital hat.)  Most hospitals have a rule of thumb for when they're willing to discharge, IIRC usually in the neighborhood of 5 lbs, though there are other medical considerations as well.  It's kind of individual, but I wouldn't worry much about getting premie clothes because most babies are almost - not quite, but almost - newborn size when they go home.  Same for premie diapers - we had them but never used them.  That may be hard to imagine even on the day of discharge, but suddenly each day the baby is a little bigger and the bigger sizes are just easier to put on them.

 

My small-for-gestational-age (SGA) kiddo wore a premie sleeper home from the hospital but that was probably the only time.  Then it went to dd's dolls.  He may have been swimming in newborn sleepers for a couple of weeks but the premie one wasn't really long enough.  (I'm not very particular about baby clothes though, as long as they have enough room.)  His twin brother was more than a pound bigger at birth (and went home earlier) and I don't think he ever wore the premie sleeper that I had for him.

Edited by wapiti
  • Like 1
Link to comment
Share on other sites

Preemie clothes tend to fit 3.5/4-6 lbs or so. It's super unlikely a baby gets discharged before 4 lbs. Smaller than that and they are either naked/diaper at first, or small kimono shirt from hospital when super stable and big (think 32? weeks or so). They do tend to have hats (if you knit you could maybe make one). And super small blankets are okay for larger babies. They are in isolettes until they can start to regulate their own temperature, usually over 32 or more weeks. The isolettes are temp regulated. A lot of NICUs place blankets on top of isolettes to block out light and noise, but only when the babies are more stable. They use donated blankets but if you have a baby blanket you could probably bring your own. I would not bring a super special one though in case it accidentally went into hospital generic laundry.

 

Honestly, like anything unknown, it's good to have some prior knowledge of what may or may not happen. But at this point I'd just take it day to day (which you're probably doing anyway). I'd make decisions based on the question to myself: am I doing everything possible that I can do? You don't even want a second of doubt in the future because it might wear at you. But if you do everything possible, you will feel more at ease.

  • Like 2
Link to comment
Share on other sites

Clothes: nothing I have is going to fit this baby even if he gets to 34-36 weeks. I don't want to buy him a lot, but I want to have a couple of things for him in case he arrives soon. I gather that a really tiny preemie (right now he weighs about a pound) just wears a diaper for a while? Do those super tiny babies need caps or booties?

 

I need to check with NICU, but at whatever point he graduates to real clothes, what did you/your hospitals find to work best? Usually I like onesies and one-piece cotton sleepers, but maybe those don't work as well for tubes and wires and all? I'd like to have a couple of preemie outfits (under 5 pounds) and then a couple of newborn outfits (the 5-8 range) ready for him whenever he can wear them. My other newborn stuff starts at like 7-8 pounds and up.

 

Oh darn, I just realized that he's probably not going to be able to wear the little white sleeper my mom gave me at my baby shower for my first. All of my babies have gotten their own first outfit, but the very first night, they've all worn that sleeper. He probably won't fit in it. :(. Sigh. The first of many traditions he's likely not to get. This is hard.

 

we didn't need clothes for ds1 until we took him home.  Until then the hospital dressed him.  For weeks, he was only in a diaper and covered with wired etc. It was difficult to hold him with all the cords attached but we managed.  No hat for a while because they had a monitor attached to his scalp.  Pretty much they need full access to his whole body in case of emergency. 

 

Once the initial crisis is over and he no longer needed all the cords and wires then a onesie was allowed, but for us the hospital provided it.  We did end up buying a very, very few preemie clothes for when DS1 came home..he came right out of the top of regular newborn clothes.  He was under 5lb when he came home, so still very tiny.  But I only bought a few things and did laundry every night.  We couldn't leave the house anyway.

Link to comment
Share on other sites

Well, mamas. When I was checking my BP with my cuff at home yesterday, it would not stay down. MFM said to come in. Good thing I did because it was sky high. They got me on IV drugs and put baby on a monitor. He looked great! Active, healthy, etc.

 

And then at 1:45 this morning, he went from happily galloping horses to serious decels. The room filled with people. They put me under and called DH (who had gone home to sleep, although he hadn't been there long). At 1:56, they delivered him via c-section (thankfully not a vertical one!). 1 lb. 1 oz. 11" long. They were able to intubate him, thankfully, and he's in the NICU. They say he's doing okay. He needs a transfusion because his platelets are low. (Thank you for alerting me about that so I knew it was normal.). He apparently is a fighter and wants to move. They had to wrap him up snugly because he was grabbing his tubes. A little while ago, they told me he wasn't needing any oxygen. DH has seen him and has held his hand. I can't see him because I'm on magnesium for 24 hours. But DH brought me pics, and he doesn't feel like a stranger. I knew him immediately.

 

They use donor milk here, formula as a last resort, and the fortifier is human milk based too. The lady came down to get us to sign the consent form for donor milk and was impressed that I knew what fortifier was. Ha! I just hand expressed a few drops into a syringe for them to take to my precious newborn.

 

 

Can you change the title to show "UPDATE IN POST 118".  I know people will want to read the update, but might miss the post if they've already read the thread before today.

 

 

 

Edited by Garga
  • Like 4
Link to comment
Share on other sites

Congratulations! I'm saying a prayer for you and that precious baby boy. It sound like he is a fighter.

 

Magnesium stinks by the way!

 

:hurray:  Congratulations. Perhaps not exactly like you planned it but it sounds like he is doing well.

 

Just curious: what is the issue with magnesium?

 

  • Like 1
Link to comment
Share on other sites

Oh, wow...! Praying for his continued growth and health, your continued recovery, and each and every day. Congratulations on his safe arrival, and know we are all praying for his continued health!

 

Much love and hugs to you....(I mailed the book yesterday morning first thing, so it should arrive to your house soon).

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

Ă—
Ă—
  • Create New...