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

[happypamama]

My littlest tiniest baby boy has some growth and fluid issues. I'm 26 weeks pregnant, but he's a few weeks behind in size, although all parts appear to be there, his heart rate and activity are normal for 26 weeks, and we've seen fluid in his stomach and bladder. Genetically, he looks normal, and they're not entirely sure what's going on, but they suspect some degree of placental insufficiency, although the tests show that it's in good shape right now. They are anticipating an early birth at whatever point they feel anything is going downhill, and it might be in a week or two or in 6-9 weeks but not likely 15. I did get the steroids for his lungs. I just spent two nights in the hospital because my blood pressure spiked and they wanted to rule out preeclampsia; I'm home on meds and light activity (but no bedrest; they want me moving around).

 

I'm not messing around. When size and fluid both looked a little disconcerting on the 22 week ultrasound, my midwife suggested we go straight to the top, Hershey Medical Center's MFM specialists and their Level IV NICU. They immediately concurred, and I will be seeing them at least weekly until delivery. We feel that we're in the best human hands possible and are at peace.

 

I've seen more doctors in the past nine days than I did in five other pregnancies. None of my others were born in hospitals or induced. Only one of my babies came before 40 weeks (38.5), so a 35 weeker is quite early for me. This obviously a big change for me, and I need to know what I can do to make it not easier, but smoother for all of us. I do realize that there's a huge variation between a 27 week preemie and 35 week one.

 

We met the NICU team, asked questions, and toured the NICU. It was less sober and less scary than I anticipated. Their policy is that parents have 24/7 access to the NICU, and even if I'm not able to accompany Baby immediately after birth, they said DH will be allowed right next to the baby from the start, even as they get Baby settled in the NICU.

 

They're super pro kangaroo care as long as Baby's skin can tolerate it. I have one soft stretchy wrap to bring and will get a second. They're also super pro breastfeeding and will get me parts for their pumps and help me with that. I've got a notebook for writing every little thing and question down, and a friend recommended Dr. Sears's preemie book. We aren't too far but far enough away that we will be eligible for the Ronald McDonald house across the street. If you've had the NICU experience, what else can you tell me that would make it a smoother time for us?

 

Should Baby make it closer to term, they may want to induce or c-section before full term. Rooming in is completely standard, and there are signs everywhere about how to initiate successful nursing, and those were two of my biggest worries. Some of my other preferences are already in my chart, and the one nurse told me they'd ask before things like the eye ointment and Hep B vaccine, so I'll have a chance to decline those. The doctor is looking into how they could consider a vaginal breech birth if all else is good because I've done it before with a 9 pounder, so I sense that they're okay with working with me to a degree. If Baby is healthy, I will be requesting that they delay cord cutting and newborn exam for a while. We will also ask that they don't offer me drugs and that if possible, my nurse be one who has experience with natural birth. We aren't interested in a doula; DH and I are super private people, and we are an excellent labor team, so we will be asking to be left alone as much as possible. But, what else can I do or bring to make the experience as positive as possible? I'm at peace with being in the hospital, I think, and at this point I am okay with induction (although I'll ask about Bishop's score), but I'm afraid that at every turn I will be seeing little things that are so different, and I want to try to make it good. So, suggestions, mamas? Especially if you are a homebirther at heart, what made your hospital birth and stay okay for you?

 

(Also, if anyone would be willing to pray for my little guy, we'd surely appreciate it. Things looked extremely dire on the first visit to MFM and less so on the second, but we have a long road ahead.)

Edited December 21, 2016 by happypamama

[Melissa in Australia]

Hugs

[purplejackmama]

Prayers. Well wishes. And so many hugs.

[goldberry]

:grouphug:  to you and family.  Wow, what a change after never having a hospital birth!  Sounds like you are handling it as well as possible.

[Guest]

Oh my- Sending you hugs and many prayers. May the Lord watch over you and your little one and bring him safely into this world.

[Stacia]

:grouphug: :grouphug:

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[Lawyer&Mom]

Both of my births were unscheduled medically necessary c-sections, so I can't offer much advice about planning a cozy hospital birth... but I do know the level four NICU...

 

My husband went along with the baby from the OR to the NICU. (While he was there, he took some video of her for me on his phone.) I had to wait in my recovery room for about two hours, then they wheeled me (in my gurney!) to her bedside in the NICU so we could meet. Didn't matter that it was 2am. They really want mom and baby to bond. They made me start pumping that first night. They are serious about breastfeeding! They will have a nurse walk an drop of colostrum to the NICU.

 

Things to prepare for: you will wash your hands raw. They will have nice lotion. Use it. Even if you pump breast milk, preemies also get formula. They need the extra calories. Accept this. Embrace the opportunity to get some rest. Your baby is in the best possible care. That means you get to take a nap. (My cesarean recovery was so much better with my NICU baby. Because I actually got some sleep in the first two weeks.) NICU nurses are the best. I enjoyed meeting them all, but I got to chat and laugh with them more once my baby graduated to the lower level NICU. Level 4, by necessity, is a more staid environment. The NICU learning curve is steep, but after a few days you will feel like an old pro, I promise.

[38carrots]

:grouphug:

[redsquirrel]

my son was born at 32 weeks. It is so, so good you are getting support for breastfeeding. They really will take that single drop of colostrum. The nurses called it liquid gold. Most of the NICU nurses were super supportive of breastfeeding and would tell me that babies who got breastmilk went home faster. I have no idea if it's true, but my heart needed to hear it. There is so little we can do for our babies when they are in the NICU, so pumping and feeding really helps you feel like you are caring for your baby.  We did kagaroo care as much as possible. ds1 could tolerate it just fine after the first week. I would let him latch on when he was inside my shirt. We didn't use a sling, just put him on my chest and covered me with blankets.  I would bring a boppy to sort of rest my arms on while I held him there. I would latch him on and let him snooze and nurse.  I remember the nurses telling me he was to weak and small to really be nursing effectively but it was ok to give him comfort.  Lol, he was totally nursing.  If my babies can do anything its nurse, they have both been total champs at that.

 

I think the biggest challenge is going to be who is going to care for your older kids when you are gone at the hospital?  Do you have someone who can stay at your house.  Now, the NICU was 90 mins away from our house, he needed a level 4 NICU and my local hospital didn't have one. I was in the nearest big city.  But even if we hadn't needed to drive that far, we were still there all day and most of the night. I didn't eat, we didn't do laundry, we didn't wash dishes.  Things kind of went to hell in our apartment when all that was going on.  I can't imagine managing other kids and trying to get to the NICU. 

 

And ds1 was a planned homebirth, but I went into labor at 32 weeks so he was born in the hospital.  And when you have a preemie it can be different from a regular hospital birth. They didn't let me be alone at all in case there was any medical emergency. I really, really had to wear the monitor because it was a high risk situation. And when I gave birth my midwife was in the room but she wasn't allowed to touch me (she didn't have hospital privledeges) so I had a new doctor I had never met and a bunch of nurses and an entire NICU team.  You know what made it ok?  My baby was healthy and alive.  I really, really didn't a crap about who was in the room or being in the hospital as long as they were taking care of my baby.

 

You are going to have to be flexible with birth plans. The NICU will have things they need to do and have to happen.  For example, ds1's umbilical cord was cut ASAP and also very close to his body. Then there were medical lines sewn into the arteries available there. They might not do this any more, but it was so that they could more easily draw blood. I would rather they did that than have to keep sticking his little foot, which was quite traumatic.  They never gave me a choice about the eye drops, it was just done. I didn't care by that point. The did NOT give him the hep B, they were willing to let me do that at our pediatrician's office.

 

And FYI, sitting in the NICU for hours holding a baby can be boring, lol.  We read the Harry Potter books out loud to DS1 to pass the time. It allowed him to hear our voice and was entertaining for us. We got through the first three books several times, lol.  The fourth books was published soon after he came home from the NICU.

 

ETA; DS1 was my first baby, so I didn't know it at the time, but my recovery was a lot longer. I'm pretty sure it was due to stress. I wasn't eating, I wasn't sleeping, I was very, very stressed.  I would try to think of ways to minimize your stress as much as possible, and take your stress level seriously. Because he was my first, I got to bring him home from the NICU and lie in bed with him for weeks. I don't think you will have that option. Also, when we brought him home I was told to not take him out of the house for months and not to have any visitors. That was all to minimize germs.  It was fairly challenging. 

 

And if you don't have a pump at home, ask if you can rent one from the hospital or buy one with your health insurance.  When the baby is in the NICU and you are home, you still need to be pumping.  The hospital has their own pump, yes, but you need a good one. A hand pump isn't going to cut it.

Edited December 19, 2016 by redsquirrel

[PollyOR]

:grouphug:

[happypamama]

This is good stuff -- keep it coming!!

 

Pump for home. Yes. I have never used one, but I will call insurance and see what they can do. Glad to hear they'll take even a tiny bit of colostrum.

 

My older kids are, thankfully, the least of my concerns. My parents live only two hours away and are retired but still pretty young and in good shape, and they raised four kids so are not at all intimidated by my crew. They'll even Homeschool the kids, although I do want to discuss with them what will make that easier. They have bags packed and are ready to come at a moment's notice. They actually have an RV that they travel in frequently, so they will bring it right away if they have time, or they'll come immediately and go back to get it after a few days. They'll park it right on our property, and that way, they'll be available all the time and will also have a retreat space of their own. My ILs will also come as needed, although they won't stay at our house overnight. DH works for a tiny, family-oriented company that is flexible (the boss already told him that he's absolutely to be with me at every visit to the MFM and that the company will work around that), and he can work from home and actually do a lot via phone/laptop even from the hospital. I have local friends who can be here in minutes in an emergency. So we should be good for both big kid care and finances, for which I am incredibly grateful. (Hospital has two nice lounge rooms right next to the NICU where we can nap or DH can work too.).

 

Hand lotion. Good to know they'll have it. I suffer from winter eczema very badly so that is definitely an issue.

 

I am learning to be flexible with the birth plans. I'm assuming the NICU will do whatever they need to do, and I'm okay with that. Anything I'm thinking about is just for if he goes close to term and is likely healthy. We really just have no idea how it might end. I totally get the "nothing else matters because my baby is okay" feeling. I'm finding that to be true.

 

Boredom -- good point. Thank goodness for phones and e-readers!

[scoutingmom]

Expect to feel a loss the first night... At least I did, but then it was unexpected when my oldest was rushed to NICU. (He wasn't a premie). I was in the maternity wing, sharing a room... Everyone has their babies with them and I.... Didn't. In his case, the NICU was quarantined just as he went in there for an infection (minor to most babies and adults... But in NICU.....) and so he was quarantined in their triage with different nurses than the other NICU babies who were on their own quarantine. So my experience is different. Our other kids could not visit when they normally would have been able to, and we were full gowns and masks and scrubbing procedures. There was also a delay before I could see him because of that.

 

Anyway, my main point is to expect feelings to be strong, which I am sure you do expect.

 

Sent from my SM-T530NU using Tapatalk

[displace]

Ask for IV placement in your forearm vs hand (it will make hand washing easier and more thorough).

 

They sound very breastfeeding friendly. Try to pump ASAP if you have a c/s and after separation. Sometimes they don't allow you to go to the NICU until the epidural wears off, which can last 4+ hours.

 

Do not refuse vitamin K. Even the easiest NICU baby will have multiple sticks, maybe IVs, and you don't want him/her to be bruised and anemic as well. They will probably administer erythromycin right in the delivery room.

 

If the baby is pretty "old" at delivery you may have a few seconds of bonding. Maybe 34+ weeks? Anything less than that (and possibly less than 36 weeks, they will scoop baby away and do what is necessary, not what is desired.

 

Preemies themselves are all different. But expect life to be slower. They eat slowly. Life will stop in the NICU. A lot get reflux or want to be held all the time. They usually bottle feed because they need the calories easily. Breastfeeding from the breast can take a while.

 

Don't bother with wraps ATM. Kangaroo care at the NICU doesn't usually use wraps/slings. In general you may be recommended to not use one for a while. The risk of suffocation is present even with big babies and high for preemies.

 

There may or may not be a great place to pump in the NICU. Some are communal rooms. Bring pictures for baby of family but no toys. They will put pictures in the isolette.

 

Walmart carries carters preemie clothes. Some car seats are too big for preemies and Can't be used. Check for infant car seats that go down to the lowest weight and compare with your current one.

 

Because of the affordable care act, I believe insurance must cover breast pumps now, especially for preemies. Check with your insurance. Medical supply places rent them (the hospital versions). Some hospitals rent them too.

 

I am thinking good thoughts for you all. There are a bazillion variables and unknowns but it's good you have some time to prep.

Edited December 19, 2016 by displace

[bettyandbob]

Expect to feel a loss the first night... At least I did, but then it was unexpected when my oldest was rushed to NICU. (He wasn't a premie). I was in the maternity wing, sharing a room... Everyone has their babies with them and I.... Didn't.

 

Sent from my SM-T530NU using Tapatalk

I had a private room, but could hear everything and it seemed like everyone was in the hall with their babies. Or the nurses were wheeling babies from the nursery to mommas' rooms. It was so cheerful and happy and I had nothing to hold. That was painful. So, I tell people who are expecting a NICU stay to request a room for mom not near people who had typical births.

[creekland]

No advice, but plenty of prayers and  :grouphug: .  I'm glad to read you have plenty of capable help and a terrific work situation for hubby.  May it all go well!

[Guest]

PA mama, I am so glad you are not thinking wishfully or failing to face reality. It sounds like you are getting the best possible care for the situation.

 

My only small bit of advice is to not be discouraged against natural birth due to people's horror stories about Pitocin induction. I was induced with my youngest under emergency conditions 3 weeks before date. I used Hypnobirthing and managed, in spite of the stress and fear of the circumstances. The staff did offer drugs many times.

 

My sincere healing hopes going out to you that all will turn out well.

[Rachel]

My 41 week baby had a stay in the NICU so my experience is different from the typical NICU experience.

 

The nurses in the NICU are wonderful, you will get to know them all but likely have a handful that are mostly with your baby. We ran into our main nurse two years later and she remembered us. The doctors are for the most part wonderful too. My husband ran into one in the middle of the night at the hospital cafeteria, he (without charts) had a long conversation with my husband and remembered off the top of his head what was going on with our son. It was comforting to know our son wasn't just another random patient to the doctor.

 

There may be a program for you to use a hospital grade pump for free at home while baby is in the hospital. Your job will mostly be pumping. Put audiobooks or music on your phone. The pumping station may only be semi-private and you will spend a lot of time there.

 

There may be a time daily when shift change occurs that you can't be in the NICU, it is a brief time but something to be aware of even if you technically have 24 hour access. They really will answer your phone calls or let you drop off breastmilk at 2:30 in the morning.

 

Kids under a certain age won't be permitted in the NICU. This is to protect the babies but it still feels weird when your little ones can't meet their brother.

 

I know a lot of people get concerned about nipple confusion, I wasn't able to breastfeed my son until he was a few days old, but he didn't have any trouble making the adjustment. That may be different with a premie, but I did want you to know it isn't a foregone conclusion.

 

Despite my request otherwise, my son was given a pacifier (being a 41 week baby he was a lot more demanding than the 27 week baby next to him). During blood work or echos (checking his heart) they would dip it in sugar water before giving it to him. They needed him to be still and calm, this really bothered me but I didn't speak up.

 

Leaving the hospital without your baby is hard! It is really hard. The NICU can be a boring place and you will feel torn about being there vs being with your other children. Take care of yourself as best you can.

 

I'm saying a prayer for you and your little one.

[happypamama]

Thanks for the warnings about feelings. That sounds especially hard. Thankfully, Hershey is big enough that their L&D floor has multiple wings. When I was there this weekend, they were able to put me on a wing away from the new babies. There were other moms with preborn and NICU babies near me, but I couldn't hear any infants from the other wing, and that was nice. When my SIL's baby was stillborn, her hospital had her near the regular maternity section, and that sounds so hard. They said they could likely keep me away from that section. I've never even used a nursery; being away from him is going to be so hard. They said they'd show him to me before they take him to NICU, at least briefly, and at least Daddy will be with him. They said if they end up needing to put me under, DH can't be in there, but they'll have him in the room next door and will grab him as they go. That's at least comforting. I was prepared for feeling like they own my baby and maybe allow me access, and it may still feel that way, but that's not quite the vibe they're giving off. Everything is more like, "we can at least do this for you."

 

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

 

I'm not going to skip the vitamin K unless he goes full term and comes out easily, but it's not a big enough hot button issue for me like the Hep B is. They said they would ask about the erythromycin before giving it, but I do want to ask when we're closer.

 

I'm so glad to read these experiences and feelings, although I'm sorry other people have had them. I really feel like things are going to be chaotic enough, and I do feel blessed to have time to work through some of this stuff when he's still happily tumbling away inside, and I'm not dealing with recovery. The NICU team will probably meet with us at least once more when we have more weeks of data on him (they meet with MFM weekly anyway, so they'll have updates on him), but they seemed impressed with the questions we were asking even right away. Homeschool moms research -- it's what we do!

 

(I can't picture how tiny he might be if he goes close to term. My kids are all like 9+ pounders, and my 38.5 week 8 pounder looked so tiny! 4-5 or even smaller boggles my mind. He picked a dramatic way to get himself a non-hand-me-down wardrobe! My car seat goes down to 4 or 5 pounds, but if he's well enough to go home and doesn't fit it, they said they can help with that.)

 

I alternate between getting panicky about it all and thinking that it's really going to be okay, and we aren't going to need any of this. That might be some denial. It's maybe hard because he doesn't act sick; in the words of the MFM, he acts like a normal, if small, 26 week baby (which was the best thing anyone could have said at this point -- we need hope), and that may be slightly deceiving since we don't know how he'll do outside.

 

Thank you for sharing, mamas. You're giving me things to consider that I didn't know about and helping me process all of this.

[momacacia]

My sweet friend had her baby at 24 weeks and she now is an adorable, busy, smart, do-all-the-things 2 year old. You are already past that mark. Just want to encourage you.

[Lawana]

And just as a note of encouragement-- I had two babies each born at 35w1d and neither was in the NICU and both went home at two days. Usual? No, but not impossible.

[AnnE-girl]

No advice, but lots of prayers for you and your little one. Someone mentioned up-thread that nearly all premies get formula, but I've read that some NICUs are going to all human milk, whether it's the mom's or donated, because babies do so much better on it. The best NICU in our area made the switch a few years ago.

[happypamama]

 

 

 

There may be a program for you to use a hospital grade pump for free at home while baby is in the hospital.

 

 

Good to know. I will ask -- thanks! Pumping sounds unfun but whatever it takes for this little guy. Sugar water and pacifiers don't thrill me, but I suppose they need to do what they need to do. I expect him not to be able to breastfeed right away, maybe even several weeks, but hopefully he will be able to at some point. At least *I* have plenty of experience with breastfeeding; it's always easier when one of you knows what's going on. It sounds really hard when your first baby is in the NICU. :(

 

Kids under a certain age won't be permitted in the NICU. This is to protect the babies but it still feels weird when your little ones can't meet their brother.

 

I asked about that because I wanted to prepare the other kids ahead of time. They actually will allow all age siblings, even the 3yo, with DH or me, as long as they don't show signs of illness. That was a pleasant surprise. I don't know how often or even if we will decide to bring the others, especially the littler ones, but I'm glad we will have the option.

 

Leaving the hospital without your baby is hard! It is really hard. The NICU can be a boring place and you will feel torn about being there vs being with your other children. Take care of yourself as best you can.

 

I'm saying a prayer for you and your little one.

Thank you for the prayers, all of you!!

 

DH had a serious injury several weeks ago and spent two nights in the hospital. I was unprepared for how hard it would be for me to leave HIM, an adult who wasn't in any danger of dying, in the hospital and to have other women caring for him, and I sobbed while driving home. (Yeah, we are a great pair right now, LOL! I really, really need this baby to stay in at least until DH is out of his back brace and can sit comfortably, which should be just a couple more weeks.). I am anticipating it being even harder to leave my baby. At least I'll have DH with me.

[happypamama]

No advice, but plenty of prayers and :grouphug: . I'm glad to read you have plenty of capable help and a terrific work situation for hubby. May it all go well!

Thank you -- and I have to say that while I've had a couple of interactions with Hershey's ENT and allergy departments and have been impressed with them, they have totally blown us away with this whole bit. When my breakfast the other morning wasn't quite right (too many carbs for me first thing and not enough protein, despite my asking beforehand), they called down, and less than ten minutes later, food services appeared with a fresh plate piled with appropriate food, and they went through the full menu for the next two days to make sure I got exactly what I needed and could eat. Every interaction has been at or above that same level. I always wax about how much I love it here, but right now, I love it even more.

[ThursdayNext]

No advice, but lots of prayers for you and your little one. Someone mentioned up-thread that nearly all premies get formula, but I've read that some NICUs are going to all human milk, whether it's the mom's or donated, because babies do so much better on it. The best NICU in our area made the switch a few years ago.

Yes to this. A long time ago, a mom in our church had a preemie. Some of the breastfeeding moms in the church pumped milk for her, since she couldn't make enough yet. If you have a breastfeeding friend who is willing, this could be done even if your hospital doesn't have donated milk.

[Insertcreativenamehere]

I had a baby in the NICU for 11 weeks. They will likely assign primary nurses to your child. You need to feel comfortable with these nurses because you'll be spending a lot of time with them. Don't hesitate to ask the charge nurse for a different nurse for any reason. We had to fire a nurse who was technically very competent with our son's complex condition but had terrible bedside manner. Be your child's advocate -- don't hesitate to speak up! The same goes for doctors -- you can ask for different doctors if you're not comfortable with one or another. 

 

I'm not sure if your other children will be visiting. Hospitals likely have strict visitor policies over the winter. Our son was born in May and their cold/flu restrictions hadn't ended, so our 2 year old couldn't see her brother until the restrictions ended a week later. Once the kids could visit freely, the Child Life specialists were very good at helping them understand baby's situation. They may have special supervised play rooms for siblings -- ours does now, but didn't when we were there. 

 

WRT to pumping, I had previously nursed our older three children for about two years each. The lactaction consultant was quite adamant about warning me that if I wanted to maintain milk supply for pumping, I needed to pump every 3 hours around the clock. Because I was so exhausted and overwhelmed by our son's extremely complex medical situation, I opted not to pump at night because I desperately needed the sleep. I did lose my milk supply at about 5 weeks. :(

 

 

Edited December 19, 2016 by poikar

[Rachel]

 

 

I asked about that because I wanted to prepare the other kids ahead of time. They actually will allow all age siblings, even the 3yo, with DH or me, as long as they don't show signs of illness. That was a pleasant surprise. I don't know how often or even if we will decide to bring the others, especially the littler ones, but I'm glad we will have the option.

 

 

Thank you for the prayers, all of you!!

 

That's good your kids can all meet him! My son and daughter were 4 and 2 when my third was born, the 2 year old wasn't allowed in the NICU, so they just peaked at him through the window.

[creekland]

Thank you -- and I have to say that while I've had a couple of interactions with Hershey's ENT and allergy departments and have been impressed with them, they have totally blown us away with this whole bit. When my breakfast the other morning wasn't quite right (too many carbs for me first thing and not enough protein, despite my asking beforehand), they called down, and less than ten minutes later, food services appeared with a fresh plate piled with appropriate food, and they went through the full menu for the next two days to make sure I got exactly what I needed and could eat. Every interaction has been at or above that same level. I always wax about how much I love it here, but right now, I love it even more.

 

Glad you mentioned that.  If I were to end up going back to doctors for anything (on my mind with my mom's diagnosis), I'm thinking of switching from Hopkins - mainly due to their billing, but Hershey is also closer and folks at school have liked their interactions.

[StaceyinLA]

I have very little NICU experience (my step-grandson was born at 31 1/2 weeks and stayed in the NICU about 2 weeks), but just wanted to let you know I prayed for your little guy, and will continue to do so.

[ktgrok]

I'd maybe consider getting your family vaccinated for flu, and keeping everyone on vitamins, etc to prevent illness, even if you don't normally do flu vaccines. And make sure everyone is up to date on their DTaP/TDaP vaccines. I understand arguments against over vaccinating, but with a preemie coming home, reducing the chance of them getting an illness from you or your kids/spouse is important. 

 

 

[happypamama]

WRT to pumping, I had previously nursed our older three children for about two years each. The lactaction consultant was quite adamant about warning me that if I wanted to maintain milk supply for pumping, I needed to pump every 3 hours around the clock. Because I was so exhausted and overwhelmed by our son's extremely complex medical situation, I opted not to pump at night because I desperately needed the sleep. I did lose my milk supply at about 5 weeks. :(

:(. I'm so sorry -- after your previous experiences that must have been a hard blow. I will take that advice to heart and really, really try to keep up the pumping at night.

 

I asked if I could donate milk to other babies if mine doesn't survive (figuring I'll need to express at least some to keep from hurting too much, and I hate to waste it if another baby can use it, especially if it's preemie milk). They said they don't have a milk bank but do get milk from one in Ohio. I'll inquire when we get closer about how that all works and what they use to supplement the baby's mother's milk. I really, really hate the idea of anyone else feeding my baby, but there's an awful lot I hate about this situation (I had planned for a waterbirth in the beautiful new bathroom DH built a few months ago, with my older kids in attendance, and none of that seems likely), and I'm trying not to think too hard about it because I have no choice.

Edited December 19, 2016 by happypamama

[Pippen]

I don't have experience with NICU, but have dealt with a child who had a long hospital stay and a stay at Ronald McDonald House.

 

RMH was wonderful about providing everything we could want, including meals. I did prefer to bring in our own sheets, towels, and a bathroom rug since our stay was for a month. Also paper towels and pump soap for the bathroom. They supplied laundry soap, but I had to bring in unscented.

 

In our case it was a very long walk from the hospital parking lot to where I needed to be in the hospital, and a wheeled tote was helpful to slug stuff back and forth. I just bought a small luggage cart to use with a tote I was already using because my shoulder was killing me.

Edited December 19, 2016 by Pippen

[happypamama]

Ok, DH said that the NICU people did say that during flu season, the younger kids might be restricted from the NICU. The NICU people didn't say it depended on whether they had had the flu shot or not. I'll ask when we get closer. Our family doc/pediatrician is on maternity leave right now, but she will be back in a few weeks, and I will talk with her about specific concerns for this baby. So very much depends on how long he actually stays in.

[happypamama]

I don't have experience with NICU, but have dealt with a child who had a long hospital stay and a stay at Ronald McDonald House.

 

RMH was wonderful about providing everything we could want, including meals. I did prefer to bring in our own sheets, towels, and a bathroom rug since our stay was for a month. Also paper towels and pump soap for the bathroom. They supplied laundry soap, but I had to bring in unscented.

 

In our case it was a very long walk from the hospital parking lot to where I needed to be in the hospital, and a wheeled tote was helpful to slug stuff back and forth. I just bought a small luggage cart to use with a tote I was already using because my shoulder was killing me.

That is very helpful advice -- sorry you have the advice to give, but that's stuff I would not have known! We have some wheeled suitcases; I'll make sure I have them accessible. It's a long walk across the parking areas/street (maybe there's a shuttle that hits the RMH and main entrance -- I'll put it on my list to ask) and then a long hallway to get to the elevators to the NICU. Wheels will be easier when/if I'm visiting alone. The RMH sounds like a wonderful option if I need more quiet/privacy than the NICU sleeping lounge provides (it has showers too).

 

Another nice surprise: we can designate up to four adults who can visit the NICU without DH or me. They won't be given any sensitive medical information, but at least the grandparents can visit if DH and I need a longer break or some time with the other kids.

[happypamama]

Oh, and I'm totally bringing towels everywhere. The ones at the hospital were small and a little rough. I told DH that when we come back, we're bringing our big fluffy ones.

[MedicMom]

I had a 28 weeker with a moderate stay in the nicu. My other kids were not allowed as they were still seeing cases of RSV and flu, even though it was spring. Like most younger preemies, he was tube fed breastmilk until he was mature enough to gain the suck-swallow-breathe reflex. They do mix the breastmilk with high calorie formula. Preemies need a high calorie count.

 

You won't need a wrap for kangaroo care. Some people basically slide the babies right into their shirts; I took my shirt and bra off and wrapped both of us in a large hospital gown worn backwards.

 

Pumping is a pain, but it's what I had to do. Baby couldn't breastfeed until six weeks old and even then I couldn't be there at every feeding.

[JoJosMom]

(This is not NICU advice, just something for folks to pray for.)  I had an extremely high-risk pregnancy with Dd.  At 22 weeks, the ultrasound showed placental degradation and I was told that they might have to take her in as little as two weeks.  She made it until 4 weeks before her due date.  I will pray for your little one and for you, and I will pray specifically that your situation stabilize so that your little boy can continue to grow.

 

(Oh, and I WAS on bedrest.  But I was typically at doctor's appointments 4-5 days per week.  It's crazy ! :grouphug: )

[happypamama]

I had a 28 weeker with a moderate stay in the nicu. My other kids were not allowed as they were still seeing cases of RSV and flu, even though it was spring. Like most younger preemies, he was tube fed breastmilk until he was mature enough to gain the suck-swallow-breathe reflex. They do mix the breastmilk with high calorie formula. Preemies need a high calorie count.

 

You won't need a wrap for kangaroo care. Some people basically slide the babies right into their shirts; I took my shirt and bra off and wrapped both of us in a large hospital gown worn backwards.

 

Pumping is a pain, but it's what I had to do. Baby couldn't breastfeed until six weeks old and even then I couldn't be there at every feeding.

I remembered your story and seeing your updates. Believe it or not, when they first started talking 20-something week delivery, I immediately thought, "MedicMom did this, and her son came home." But of course, they have cautioned us that an otherwise healthy and normal 26 or 28 weeker who is early for other reasons may be different from a growth restricted baby who's had placental or low fluid issues, so who knows? But remembering you did give me hope.

[wonderchica]

 

 

I asked about that because I wanted to prepare the other kids ahead of time. They actually will allow all age siblings, even the 3yo, with DH or me, as long as they don't show signs of illness. That was a pleasant surprise.

 

That's great, but keep in mind that may change, especially if you deliver during flu season. Our NICU has a great visitors policy, but during flu outbreaks they will restrict underage visitors in particular (too germy). Hopefully you won't run across this, but just a heads up! They aim to keep the NICU a pretty quiet, relaxing as possible place for the babies so short visits with kids are usually best. I would really encourage you to let them visit! My brother was in the NICU when I was young and kids couldn't visit back then. I really wish I had, as my memories of that time are mostly stressful and a nice visit with baby bro would've been very comforting! I would also encourage taking advantage of the Ronald McDonald house as needed- they are very nice, welcoming places. You can store food and they usually have snacks and home cooked dinner available each night. You will get tired of fast food or no food very quickly during a longer hospital stay. Self care is so important!

[happypamama]

(This is not NICU advice, just something for folks to pray for.) I had an extremely high-risk pregnancy with Dd. At 22 weeks, the ultrasound showed placental degradation and I was told that they might have to take her in as little as two weeks. She made it until 4 weeks before her due date. I will pray for your little one and for you, and I will pray specifically that your situation stabilize so that your little boy can continue to grow.

 

(Oh, and I WAS on bedrest. But I was typically at doctor's appointments 4-5 days per week. It's crazy ! :grouphug: )

Wow!! That's so awesome, but I can only imagine the terror you must have felt at first. They told us at the first appointment (just shy of 25 weeks) that there really wasn't anything they could do for him at that point. Even if he or I went downhill, he was just too tiny for the NICU to have much hope of intubating him. NICU concurs, so even with high risk of stillbirth, they're in agreement with us that he should stay where he is. The second report was better, so we just wait and see where all the graphs intersect. It's so good to hear that you had similar issues and went so long!!

[MinivanMom]

I think you've gotten some good advice. I would just strongly encourage you to stay at Ronald McDonald. We were in a similar situation (relatively close to the NICU, but just far enough away to qualify for RM). I am so glad that we opted to stay. Ronald McDonald has the hospital grade breast pumps and is right across the street. It meant my husband could run milk across the street in the middle of the night if necessary, and I could spend as little time away from the baby as possible. Most nights I would leave around midnight after 11:00 cares, and then I would return around 6:30 am before shift change. It just gave me a place to rest and shower. And as a mom with lots of older kids, it also allowed me to be completely focused on the baby and on my own recovery. I don't think I could have done that if I was going back to my own home every night.

 

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.

 

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.

 

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.

[Pippen]

Ok, DH said that the NICU people did say that during flu season, the younger kids might be restricted from the NICU. The NICU people didn't say it depended on whether they had had the flu shot or not. I'll ask when we get closer. Our family doc/pediatrician is on maternity leave right now, but she will be back in a few weeks, and I will talk with her about specific concerns for this baby. So very much depends on how long he actually stays in.

 

The facility we were at restricted all visitors under the age of 12 when they started seeing a big influx of H1N1 patients. I know the policy was upsetting and inconvenient for patients and families, but after listening to one of the respiratory therapists describe her experience treating H1N1 patients, I totally got it. In addition to NICU, they had many immuno-compromised patients in their organ transplant, cancer, and blood cancer units. It was in the best interest of everyone's health to minimize the risk of exposure to patients and staff.

 

If you're not already using Skype or Facetime or something along those lines, it would be a good time to get that ball rolling. 

[happypamama]

That's great, but keep in mind that may change, especially if you deliver during flu season. Our NICU has a great visitors policy, but during flu outbreaks they will restrict underage visitors in particular (too germy). Hopefully you won't run across this, but just a heads up! They aim to keep the NICU a pretty quiet, relaxing as possible place for the babies so short visits with kids are usually best. I would really encourage you to let them visit! My brother was in the NICU when I was young and kids couldn't visit back then. I really wish I had, as my memories of that time are mostly stressful and a nice visit with baby bro would've been very comforting! I would also encourage taking advantage of the Ronald McDonald house as needed- they are very nice, welcoming places. You can store food and they usually have snacks and home cooked dinner available each night. You will get tired of fast food or no food very quickly during a longer hospital stay. Self care is so important!

Thank you. Yes, it's important to me that at least the older kids get to make the choice to see him. The little ones may be restricted during flu season. But we are opting to be as up front with our other kids as possible. We aren't dwelling on it with the younger ones, but they have been told that their new baby might die. (3yo says, "Him live wiff King Jesus," but I know he doesn't fully get what that means.). The older ones are encouraged to get as many details as they want. I hate that this is part of their life story, but it is, and I want them to have whatever info is comforting. They may choose not to see him if he dies or if he's very tiny and hooked up to machines, but as much as possible, I want that to be their choice, and I won't make it for them.

 

If they can visit, we will bring multiple vehicles and adults so we can make the visits short. I don't think they'd do well for long visits, but you're right that even some short ones may make it a little easier on them.

[Pippen]

I think you've gotten some good advice. I would just strongly encourage you to stay at Ronald McDonald. We were in a similar situation (relatively close to the NICU, but just far enough away to qualify for RM). I am so glad that we opted to stay. Ronald McDonald has the hospital grade breast pumps and is right across the street. It meant my husband could run milk across the street in the middle of the night if necessary, and I could spend as little time away from the baby as possible. Most nights I would leave around midnight after 11:00 cares, and then I would return around 6:30 am before shift change. It just gave me a place to rest and shower. And as a mom with lots of older kids, it also allowed me to be completely focused on the baby and on my own recovery. I don't think I could have done that if I was going back to my own home every night.

 

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.

 

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.

 

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.

 

Both as a patient and caregiver for an older child, I found noise cancellation headphones to be really helpful not only to block out the noise, but also to give me a way to have a mini-retreat.

[TheReader]

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.

 

Don't stress too much over bottles; my youngest was in NICU for 7 weeks, 1.5 hrs from home, and our older children couldn't visit, but we had no child care help, so that meant we only went every other day, in the evenings. (Both our olders were also NICU babies/preemies, and youngest was in the best hospital around, so we were more comfortable with the situation than most). Due to that, when he was big enough to switch from a feeding tube to feelings by mouth, he was switched to bottles. Always with breast milk, and it was never supplemented with formula, but due to my distance from the hospital and inability to visit often enough (and health issues of my preemie), all his hospital feelings were bottle, not breast. It did take effort to switch once home, but he went on to nurse until he was three years old.

 

Kangaroo care, as others have said, really doesn't use a sling. Just wear button up shirts that you can open and place baby skin to skin while sitting with him. Depending on his stats, this may not start happening right away.

 

Ask the hospital about the nurse/doctor schedule; I don't know if Hershey is a teaching hospital or not. If it is, you may have a rotation. For ex, my baby was born at the end of February, and the hospital was a teaching hospital, so the doctors, nurses, etc. doing the day to day care worked in one month rotations. This meant he had one team for the part of February he was there, another team rotated in for March, and he had a different team for the week of April that he was there. The main overseeing doctor was the same, but the folks we met bedside rotated.

 

You can take clothes, blankets, etc. and they will use them once able. 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. They will keep it in the isolette with baby so he has the comfort of your scent near him (or, our NICU did, and I believe most will).

 

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. The folks caring for him, there's truly no one else on earth like a NICU nurse or doctor. Believe me when I say that every one of them cares for your baby as much as you do; in a different way, but your baby, and others like him, is their mission and passion in life. When your baby does things that scare you, remember that he is being cared for by people who have devoted their lives to caring for exactly this, and they are experts at it. I know it's hard. I have done it three times, and it's hard every time. But it is, and will be, okay.

 

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, because if baby needs a transfusion (many never do, some need many; a lot will depend on how early your little one arrives), it takes a few days to fully match the blood; with NICU babies they do more than just match blood type, they match antibodies and all too. If you or your husband is a match, they will use that if you request it....but it does take a few days so ask about it, and find out how early you can donate, etc. if that is important to you. I know for some people it is, for others it isn't.

 

Take pictures. If your baby arrives very early, this will be his first home, for a while. You will, one day, treasure those photos.

 

They really are much more family friendly than in the past; the goal of the NICU staff is to get baby home with his parents; they really do spend their days and nights helping you learn to care for him, bathe him, nurse him or bottle feed him, etc. They may say bottle at first, because nursing uses more calories, and they may say you have to pump before you can do kangaroo care or let baby latch on, because he may not have suck/swallow/breathe coordinated yet. Listen to them.

 

When you pump, it helped me to have one of his blankets, and to sing lullabies, praise songs, etc, just as if I were rocking him to sleep and nursing him. I would keep a picture of him, and just as much as possible mentally imagine I was nursing my baby, not pumping. It really helped my milk supply. 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.

 

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.

[happypamama]

Skype! Yes, we need to get that figured out. I'm so glad I finally got a smartphone this summer; it'll make some things so much easier.

 

DH says they did tell us that the RMH has the hospital grade pumps that will work with the pump parts the hospital gives me. I'm not an auditory learner and can only process so much that way at once, so I'm glad he's been there too. The more I know now, the smoother I can make this. I'm so glad to hear the RMH have been as nice as advertised; they sound like a wonderful option. The 45 minute drive to and from home in February will grate after a while.

[shawthorne44]

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.   

[displace]

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.

Edited December 19, 2016 by displace

[TheReader]

P.S., I sent you a PM just now, as I have a book I would like to mail to you, if you are comfortable passing me your address.

[MedicMom]

I remembered your story and seeing your updates. Believe it or not, when they first started talking 20-something week delivery, I immediately thought, "MedicMom did this, and her son came home." But of course, they have cautioned us that an otherwise healthy and normal 26 or 28 weeker who is early for other reasons may be different from a growth restricted baby who's had placental or low fluid issues, so who knows? But remembering you did give me hope.

We did have placental issues, though I didn't realize the full extent till later. It began to seperate from the uterus at 15 weeks and generally began to die. It's probably what triggered labor.

He was a good size though and I think the steroids really helped his lungs. He has some speech delays now, but overall is doing pretty well.

 

You can do this.