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

happypamama

By happypamama,
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happypamama
happypamama

Thank you for all the prayers! They worked! Little Nathaniel (we finally named him -- I told them they could call him that or "Nate") got the miracle he needed! He has improved since last night. La

happypamama
happypamama

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

happypamama
happypamama

Best Christmas present ever -- he was well enough that they were able to open his isolette long enough for us to kiss his tiny head! If I ever worried that I wouldn't know him, my fears are quelled -

FO4UR

FO4UR

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I brought a baby home from the nicu this time four years ago.

 

Do you have a journal to write in? Send hubby to get one if you don't. Your brain turns to mush and you will want to remember some of these things.

 

Keep pumping! That is truly one thing that can keep your maternal heart going when your sweet bundle cannot be held. I pumped like crazy, and was able to donate over 250 ounces to another child. Overflow of love.

 

Take care of you too. C/S are no joke, and we are discharged from major surgery like it was nothing. Eat well, do not over do it. Stay in a wheelchair instead of walking for longer than you think you need to. Bind your tummy up very well during the day. Keep binding for several months. Months.

 

My nicu baby is four years old now, and a walking, talking miracle. Her middle name is Hope, so that is my prayer for your little guy.

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RioSamba

RioSamba

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Best Christmas present ever -- he was well enough that they were able to open his isolette long enough for us to kiss his tiny head! If I ever worried that I wouldn't know him, my fears are quelled -- he smells like one of my babies.

PTL for this most wonderful Christmas blessing. Thank you for sharing it. I just prayed for you both.
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happypamama

happypamama

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Thanks, mamas. His little body is just working so so hard and trying to do so much that it shouldn't be expected to do yet. Today he was getting more blood.

 

Pumping is so frustrating. I took a 5 hour break last night and then got about 30 ml from each side, which was great. And then the last two times, I've struggled to get 10, and I'm sure that's normal, but it's disheartening. I'm drinking a ton of water and trying to rest, but it's so hard. Today I had a follow up for my BP (which is okay but borderline), and everything just takes so long, and I've barely even seen my older kids in a week, and I really just don't know how this is going to go on for months and months. I'm so tired. And a little angry at the situation -- I'm not going to be able to do much of anything or take my big kids anywhere for months because of pumping, and I'm teaching all of them my favorite topic this year (medieval history -- I have a degree in it, and I've been waiting twenty years to really teach it to my kids), and it's frustrating that I can't really do it the way I've planned because of DH's injury and now this. I know none of it matters in the end, and I'm glad my baby boy has a chance at life, but today I am having a hard day.

 

I have a notebook where I write notes and thoughts and my pump schedule. I'm doing zero housework or anything like that. I do have a binder that feels really good on my stomach, and the recovery is going well.

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displace

displace

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It's hard. (Hugs)

 

It's hard seeing a child in pain, premature, and everything come to a screeching halt. It's hard to have a c/s for many women, with physical dependency on others for a while and pain. It's hard having difficult days. It's hard taking steps back and the unknown. It's stressful. It's frustrating.

 

Have you gotten the hospital grade pump? Have the Lactation consultants spoken to you about your supply? Are they concerned? Sometimes changing flange sizes (either bigger or smaller) can help production. Have you adjusted the suction strength or frequency? Have you considered fenugreek or stronger meds to help?

 

Homeschooling: idk honestly about that. For any NICU family, most people basically live at the hospital until discharge, and then ex NICU babies tend to be needy afterwards too (even healthy NICU babies may need more holding, feedings, time, doctor appts, meds, etc). Is it possible to change to more independent curriculum or get it done / less teacher intensive?

 

Pumping is very time consuming! If you pump every 2.5 hours for 30 min (including set up), that's... 4 hours. Travel and spending time in the NICU is usually hours per day too. If your DH can help clean, or there's family around to cook or clean for you, do that. If you have budget to order meals or prepared foods instead of cooking, do that. If there's anyone to outsource homeschooling to, or virtual school, you may need to consider that.

 

I'm sorry you are going through this. It's hard and everything you feel is normal.

 

ETA - maybe a modified curriculum to teach on weekends, and year round schooling, could help.

Edited by displace
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Guest

Guest

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Don't forget, PAmama, that medeival history will still be there waiting when you are on the other side of this. :) That is one of the wonderous things about hsing. I'm sorry it's a hard day. Many hugs to you and for baby Nathaniel.

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bwdiaz

bwdiaz

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I'm teaching all of them my favorite topic this year (medieval history -- I have a degree in it, and I've been waiting twenty years to really teach it to my kids), and it's frustrating that I can't really do it the way I've planned because of DH's injury and now this.

I just wanted to tell you that I hear you and completely understand this concern. Do not feel it is trivial.

 

I've been reading this thread for several days and thinking of you and your baby and family often. I had a baby that was small and early, though not early like yours, and she had a lot of lung trouble but recovered and is a healthy and vibrant girl today. We did not end up with a successful breastfeeding experience, though I did have lots of support, pumping, cleaning, at home. All my colostrum came and went to baby but it took a long time to change to milk due to my c-section and post op meds, and by the time she was strong enough to suck she just wouldn't. She was acclimated to tube and then bottle. I pumped for a long time but two months in I was still getting 30-40 cc's. It sucked big time. I felt terrible. I thought she would never be as attached to me as her older sister and that everyone else got to love her while I was busy pumping.

 

Do not discount your feelings. They are valid. Later, my youngling grew and thrived and I learned what the best ways were for the two of us to bond and it was all ok. She and I are both ok. You and he will get there too. So will your other kids. Our hearts are made to stretch and grow and the siblings of your new son will learn different things than medieval history.

 

As for that topic, you do have options there. If your older kids have time, and I were in your shoes, I would put it off. Favorite subjects are worth being done well. FaceTime or Skype and talk about how you're feeling and tell them you guys will pick it up in September or next January. In the meantime, this is the perfect time for a unit study or a semester long civics course or some in-depth geography. That can be a stop gap until you can get back to the topic you love.

 

If you don't have time for the older ones to push it off, then they will have to go it independently and you can get back to it with your younger ones later. Go ahead and grieve the loss though. It is not silly, and you won't be able to make good choices if you hold onto your feelings about the way it should have been.

 

(((Hugs))) We understand. We all have subjects like that.

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Guest

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I'm crying for you mama - pumping sucks, no pun intended, and is extremely time consuming and stressful. Life has kind of stopped here outside of that basic job, and any school my older kids can self direct on with grandma and grandpa.

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happypamama

happypamama

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Thank you mamas. And of course, immediately after I wrote that, I got a ton from the pump, like 25 ml from each side. I think I need to remember that it's probably going to vary from session to session. I have spoken with lactation (they have at least one ibclc on staff), and they were actually impressed because having even 10 ml per side at three days after all of these challenges is good. I will keep up with them if I am concerned though. I haven't been able to get the hospital grade pump yet; I just got discharged Saturday, and things have been closed today. It's on my list for tomorrow. I just have a lot of flip flopping emotions, which is typical postpartum anyway. (I've not had PPD before, but i know I'm at high risk this time. The MFMs are aware of my situation and will be watching me closely. They have me coming in again in a week and have said they will see me weekly if I feel the need.)

 

I have parents who are amazing. Retired but still young. They brought their RV and are basically planning just to be here for the next four months. They offered as soon as we said there might be a problem. So I'm not worried about the housework. Friends have brought meals, and they started a meal train for us, and DH's boss and his family showed up Christmas Eve with a ton of food and household necessities (even laundry detergent and toilet paper and toothpaste). Other people have sent gift cards so we can get Peapod to deliver groceries/help with gas and meals at the hospital (and they give me some vouchers toward meals every day he's in the nicu). DH's boss is flexible with his work hours, and he can do a lot with a laptop and smartphone. To say our community has rallied around us is an understatement. And all of you are holding me up; I can't tell you all how much I love all of the support you're giving me. I can't imagine that any Mom in my situation has had more physical and emotional support than I have. Literally, the only thing I have to worry about is myself.

 

School. My parents are going to take over. My year is well planned, and my 11yo is 95% independent. I'll discuss books and history with him as I have time. My 8yo is easy to school as well, although he's not a strong reader so he's not terribly independent. But I can request library books for him, and if we don't do all the sotw activities, no big deal. My high schooler is the biggest deal -- she has to keep going. My mom is an experienced homeschooled, and DD's work is well planned, so Mom will make it get done. My dad is a former AP Calc teacher so I think he can handle AOPS. If it's all too much, I'll look into more Khan Academy or cyber school if need be. Mostly DD just needs to be made to do the work when she doesn't want to. My Ker is required to do nothing, so he's easy. It's actually a good setup. I'm just sad and grieving, and I appreciate reminders that that's okay.

 

I did take a nap this evening, and I feel a bit more even keeled. I don't have to be up early tomorrow (today I needed to call MFM first thing), so I can sleep in. That should help. I'm planning to spend most of the week in bed, napping, except for visiting the baby.

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Meriwether

Meriwether

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Thanks, mamas. His little body is just working so so hard and trying to do so much that it shouldn't be expected to do yet. Today he was getting more blood.

 

Pumping is so frustrating. I took a 5 hour break last night and then got about 30 ml from each side, which was great. And then the last two times, I've struggled to get 10, and I'm sure that's normal, but it's disheartening. I'm drinking a ton of water and trying to rest, but it's so hard. Today I had a follow up for my BP (which is okay but borderline), and everything just takes so long, and I've barely even seen my older kids in a week, and I really just don't know how this is going to go on for months and months. I'm so tired. And a little angry at the situation -- I'm not going to be able to do much of anything or take my big kids anywhere for months because of pumping, and I'm teaching all of them my favorite topic this year (medieval history -- I have a degree in it, and I've been waiting twenty years to really teach it to my kids), and it's frustrating that I can't really do it the way I've planned because of DH's injury and now this. I know none of it matters in the end, and I'm glad my baby boy has a chance at life, but today I am having a hard day.

 

I have a notebook where I write notes and thoughts and my pump schedule. I'm doing zero housework or anything like that. I do have a binder that feels really good on my stomach, and the recovery is going well.

Oops. I should have kept reading. I am thrilled with how much support you've been given.

Edited by Meriwether
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happypamama

happypamama

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:grouphug: :grouphug: Can you just let school go for a month or more and work during the summer?

Maybe. We have a June 30 deadline for evaluations, but I can make it work. The problem is that we already take a half day a week so we already start school in July. And because of DH getting hurt, things have already been a little laid back and sporadic for several weeks. There just isn't much reserve. Plus, the kids need some structure. We had already planned to take off all of last week and this, so that's nice (and my parents and DH made Christmas tree, cookies, and wrapping happen; I finished all the shopping a couple of weeks ago just in case). Next week we will start back to school at least part time.

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Lawyer&Mom

Lawyer&Mom

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My NICU baby was my second cesearean. I had a rough recovery the first time and I was determined to do better the second time. I took a nap *every* afternoon. It was an official part of my schedule. It meant less time at the NICU, but I think it was so worth it for my long term well being. The extra sleep made such a difference in my recovery. At least for the first few weeks I can't recommend rest highly enough.

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happypamama

happypamama

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My NICU baby was my second cesearean. I had a rough recovery the first time and I was determined to do better the second time. I took a nap *every* afternoon. It was an official part of my schedule. It meant less time at the NICU, but I think it was so worth it for my long term well being. The extra sleep made such a difference in my recovery. At least for the first few weeks I can't recommend rest highly enough.

That's what I'm finding. It was hard yesterday because it was Christmas. Tomorrow we have a meeting with one of the attendings, so it'll be a longer time up there, plus pumping. I'll probably nap a little in the car and go straight to bed when we get home, which is what I did today. As the baby gets to where we can do more than just look at him (and they keep a blanket over his isolette when he's stressed, which is often), we will stay more and probably at the RMH too.

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Guest

Guest

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I'm glad you have so much support around you and are open to using it! Definitely take care of yourself. The stress alone takes a toll, not to mention recovery and hormones. Be kind to yourself. Many hugs and prayers mamma. We are all thinking of you.

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mumto2

mumto2

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:grouphug: I have been praying for you and Nathaniel. Your support system, especially your parent's ability to take over on the home ed front is wonderful. I am so glad that you will be able to concentrate on your recovery and your precious baby while simply enjoying the rest of your family.

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happypamama

happypamama

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Little guy is resting after a long day, including getting a PICC line, which should make some things easier on him. We saw him briefly, but they've been messing with him so much today that it was best just to tuck him up and let him rest.

 

Also met with one of the attendings. He says the same things we've been hearing, that his lungs are the biggest issue and really need to grow. There are other concerns about the heart, brain, eyes, and bowels, but the lungs are really the biggest concern.

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happypamama

happypamama

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I'm glad he was able to get a picc line. Are they removing the umbilical line? Praying for lung growth, prevention of brain, heart, and bowel problems.

I'm not sure, and neither is DH. They were trying to get him settled so he could rest so we didn't stay longer than a few minutes. Otoh, his blood gasses have been good.

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happypamama

happypamama

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Hoping your little guy is still doing well... same for you too, of course.

He's a whole week old! So he made it through several hurdles already: delivery, the first day, now a week. Haven't heard from the nicu today, and truly, no news is good news. Yesterday the attending was talking about the next milestone being 30 weeks, and I realized that that was eighteen days away, three times his current lifespan. Decided not to think that far ahead.

 

I'm doing okay. I have up and down moments. My recovery is better than I anticipated. I still wouldn't opt for a c-section, but it's not as horrible as I thought it might be. I haven't taken any painkillers in several days. The incision twinges a bit on each end when I get up and down but that's about it.

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Guest

Guest

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My little guy is a week old too and you're going great on your c-section! Mine is still killing me because I have been running around like crazy in the nicu and not able to rest. Still, what can you do?

 

I hope his second week is fantastic and full of good news!

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happypamama

happypamama

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My little guy is a week old too and you're going great on your c-section! Mine is still killing me because I have been running around like crazy in the nicu and not able to rest. Still, what can you do?

 

I hope his second week is fantastic and full of good news!

In all fairness, I do tend to bounce back pretty quickly. I've been up pretty quickly after my vaginal births, and after my appendectomy last year, I was in great shape within a few days. It's just what my body does. But also, there is so little I can do for my little guy yet, because he can tolerate so little, and while your little one is likely to be home soon, I am looking at a long marathon of 3-5 months. When he can tolerate more care, I'll probably be up with him more, but for now I am trying to rest and spend time with my other children in anticipation of being gone a lot.

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Ravin

Ravin

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Quick mamas -- I forgot to ask them this. We have well water with a heavy mineral count (but safely drinkable -- i guzzle it down) and we also have a softener for the hot water. I'm supposed to wash the pump parts. Is our water okay for washing the parts???

 

I can't fathom why it wouldn't be. 

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Guest

Guest

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Because paranoid mama. :)

Paranoia is pretty much a self protective gesture at this point - I think it comes with the NICU territory :lol: You're wise to rest and relax with the your kids as much as you can while things are mellow.

 

Have you planned anything fun for you in the meantime? Any books or projects or self care things to look forward to? I finally grabbed some makeup for my hospital bag (just to make myself feel more put together) and some yarn for making him a hat and baby blanket. I also started a totally fluff audiobook to keep my brain busy when I am pumping :o

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creekland

creekland

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He's a whole week old! So he made it through several hurdles already: delivery, the first day, now a week. Haven't heard from the nicu today, and truly, no news is good news. Yesterday the attending was talking about the next milestone being 30 weeks, and I realized that that was eighteen days away, three times his current lifespan. Decided not to think that far ahead.

 

I'm doing okay. I have up and down moments. My recovery is better than I anticipated. I still wouldn't opt for a c-section, but it's not as horrible as I thought it might be. I haven't taken any painkillers in several days. The incision twinges a bit on each end when I get up and down but that's about it.

 

Glad to hear all is going reasonably well!  Continuing to offer prayers and best wishes for the future, one day at a time.

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