happypamama Posted December 29, 2016 Author Share Posted December 29, 2016 When we saw him last night, they were trying to put in an arterial line. They tried several times and got it in but couldn't get it to flush. They decided to try again in his ankle after a few hours later, but we decided to head home. He doesn't like all the poking and messing; you can see him squirm and flinch. It's pretty awful not to be able to comfort him at all. He's too little even for a pacifier. They upped his feeds to 2mL every three hours, but of course, they stop his feeds when they give him blood. They're still very very concerned about his lungs; we just don't know how long they'll be able to hold out. Pumping is going well. I'm getting 20-30 mL from each side, and that's really plenty at this point because more will go to waste. I did get a hospital grade pump for home, and it's quieter, gentler, and more efficient. At least he's got plenty of milk available to him, although it's taking over my freezer, LOL. (They only like the little bottles, no bags.) I'm struggling really hard to make sense of it all. I don't understand why God would have performed all the little miracles that even got us to a place where he could have a chance (like me even having a BP cuff because DH broke his back a few weeks ago), only to stop them before our little guy comes home to us, but I obviously don't see everything. I'm really having a hard time. 5 Quote Link to comment Share on other sites More sharing options...
Jaybee Posted December 29, 2016 Share Posted December 29, 2016 :grouphug: :grouphug: :grouphug: You must be so very tired in every way. Praying for you, sweet mama. 2 Quote Link to comment Share on other sites More sharing options...
Liz CA Posted December 29, 2016 Share Posted December 29, 2016 Questioning is normal. You are going through a difficult struggle. Praying he will steadily improve. 5 Quote Link to comment Share on other sites More sharing options...
Selkie Posted December 29, 2016 Share Posted December 29, 2016 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
scholarly Posted December 29, 2016 Share Posted December 29, 2016 Many hugs to you and your boy. 1 Quote Link to comment Share on other sites More sharing options...
TheReader Posted December 29, 2016 Share Posted December 29, 2016 Continuing to pray and trust and hope. It must be scary and confusing; I can't even imagine. All of mine were early....but not this early. I have, though, seen God do miraculous things with little ones like this, and I trust and hope in Him to do the same for sweet Nathanael. Praying, fervently, for you and him and his doctors. ((((Hugs)))) 3 Quote Link to comment Share on other sites More sharing options...
displace Posted December 29, 2016 Share Posted December 29, 2016 It's hard. It's heart wrenching to see a little baby in pain, especially your DS, who's also a preemie. I remember feeling upset that DS was getting poked and stuck and in pain when he was still "supposed" to be oblivious :(. It's good they were able to increase his feeds, and that your milk is in. I ended up buying a chest freezer for oversupply of milk. Breast milk is good for 6? months in them. You may find a better system like pumping in bottles during the day, then combining to freeze in a bag. You always want the freshest milk for him so the rest may or may not be fresh/frozen. And it will be a while before his feeds are more than just a small amount. I won't pretend to know about fate or G*d's will. But I do think we should all continue doing the best we can and keep doing what we feel is right. At the very least you can feel comfort in that. Thinking of you both and your DS. 7 Quote Link to comment Share on other sites More sharing options...
Twigs Posted December 29, 2016 Share Posted December 29, 2016 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted December 29, 2016 Share Posted December 29, 2016 (((Hugs))) It doesn't make sense. It sucks. It's okay to be sad and pissed and take time to process this all. We are here for you. Still praying for you all. Quote Link to comment Share on other sites More sharing options...
happypamama Posted December 29, 2016 Author Share Posted December 29, 2016 It's hard. It's heart wrenching to see a little baby in pain, especially your DS, who's also a preemie. I remember feeling upset that DS was getting poked and stuck and in pain when he was still "supposed" to be oblivious :(. It's good they were able to increase his feeds, and that your milk is in. I ended up buying a chest freezer for oversupply of milk. Breast milk is good for 6? months in them. You may find a better system like pumping in bottles during the day, then combining to freeze in a bag. You always want the freshest milk for him so the rest may or may not be fresh/frozen. And it will be a while before his feeds are more than just a small amount. Yeah, I have quite a freezer stash already. I filled his bins at the nicu and have been storing it here. Each day's bottles go in the freezer and then I put each day's worth in a ziplock gallon bag with the date. They do want the freshest milk first, but they'll use frozen too, and right now, they may elect to use the smaller bottles so it doesn't get wasted. They're a long way from worrying about the frozen stash running out. I took them a bottle of fresh last night because it's only good for four days, and I knew the latest they had was four days already. I might take them a small bottle tonight just in case he did get all his feeds today, but they might want me to take it home. I'm sure we'll figure out a rhythm with it when he's more stable, but for now, at least I can be glad I have plenty of milk for them for now. I'm getting 14-16 bottles every day, each 10-30 mL, so he should have plenty when he gets stronger. I hope. 5 Quote Link to comment Share on other sites More sharing options...
happypamama Posted December 29, 2016 Author Share Posted December 29, 2016 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 I do have a couple of novels I haven't read yet, and I picked up some yarn for a hat for him, plus I have knitting projects for my other smallboys and an outfit I want to knit for Nathaniel, but I don't think I can handle starting that until he's a little bigger. I think it'll be too painful to start it now while he's so precarious. Beyond that, I do have shows on my phone for whenever I'm bored, but as of yet, everything's just small snippets of time here and there. We aren't really spending a lot of time at his bedside yet. I send thank you emails and texts when DH is driving, and I'm really glad I finally got a smartphone this summer because it makes everything a ton easier. 3 Quote Link to comment Share on other sites More sharing options...
Guest Posted December 29, 2016 Share Posted December 29, 2016 I'm struggling really hard to make sense of it all. I don't understand why God would have performed all the little miracles that even got us to a place where he could have a chance (like me even having a BP cuff because DH broke his back a few weeks ago), only to stop them before our little guy comes home to us, but I obviously don't see everything. I'm really having a hard time. I'm sorry, Mama. I've been there. 2 Quote Link to comment Share on other sites More sharing options...
displace Posted December 29, 2016 Share Posted December 29, 2016 It's hard to be bedside for a long time, and it's normal. It's also normal to feel like you should want to be there when you're not, and not want to be there when you are. If that even makes sense. The NICU is stressful and painful. Plus your DS is in an isolette and can't be handled "just because". Good days mean a lot of boring nothing waiting. And bad days are bad. You're smart to focus and conserve energy ATM. And it's Normal to feel conservative with feelings or actions because of his tenuousness or precariousness. A lot of NICU moms feel that way for a long time. 6 Quote Link to comment Share on other sites More sharing options...
RioSamba Posted December 29, 2016 Share Posted December 29, 2016 When we saw him last night, they were trying to put in an arterial line. They tried several times and got it in but couldn't get it to flush. They decided to try again in his ankle after a few hours later, but we decided to head home. He doesn't like all the poking and messing; you can see him squirm and flinch. It's pretty awful not to be able to comfort him at all. He's too little even for a pacifier. They upped his feeds to 2mL every three hours, but of course, they stop his feeds when they give him blood. They're still very very concerned about his lungs; we just don't know how long they'll be able to hold out. Pumping is going well. I'm getting 20-30 mL from each side, and that's really plenty at this point because more will go to waste. I did get a hospital grade pump for home, and it's quieter, gentler, and more efficient. At least he's got plenty of milk available to him, although it's taking over my freezer, LOL. (They only like the little bottles, no bags.) I'm struggling really hard to make sense of it all. I don't understand why God would have performed all the little miracles that even got us to a place where he could have a chance (like me even having a BP cuff because DH broke his back a few weeks ago), only to stop them before our little guy comes home to us, but I obviously don't see everything. I'm really having a hard time. Of course you are having a hard time! I'm sending you many hugs and I just prayed for you and your sweet baby. Quote Link to comment Share on other sites More sharing options...
Guest Posted December 29, 2016 Share Posted December 29, 2016 :grouphug: It's so hard watching them be in pain, even for something good like treatment. I'm so happy to hear of your good pumping though! I wish I had wisdom on the question of purpose. I've been going hot and cold all week as I struggle with that myself. Praying for you. Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted December 30, 2016 Share Posted December 30, 2016 My younger daughters made a playlist/CD of music for their older disabled sister for Christmas. This dd loves music and her sisters are sick of some of the stuff I play for her (that she loves), so they decided to make a playlist with some more "current" songs. They picked all of the songs themselves. As I was listening to the CD, one song jumps out at me, and reminds me of all this disabled dd and I have been through together (seizures, developmental issues, hospital stays, etc.). I hope it doesn't offend...I'm a Christian, but the lyrics "walk through hell with you" don't offend me, because some of the stuff these kids go through is horrible. The song is Stand By You by Rachel Platten. The lyrics that jumped out at me are: Even if we can't find heaven, I'll walk through Hell with you Love, you're not alone, 'cause I'm gonna stand by you. And searching for the lyrics online, I see that I might just have to learn the whole song: Yeah, you're all I never knew I needed And the heart--sometimes it's unclear why it's beating And, love, if your wings are broken We can brave through those emotions, too 'Cause I'm gonna stand by you Here's to the great love mamas have for their babies. Praying for you and your little one as you stand by him. 14 Quote Link to comment Share on other sites More sharing options...
Guest Posted December 30, 2016 Share Posted December 30, 2016 *sobbing* Ali, that was beautiful! Now I'm a mess. 4 Quote Link to comment Share on other sites More sharing options...
creekland Posted December 30, 2016 Share Posted December 30, 2016 :grouphug: :grouphug: :grouphug: Still sending prayers for Nathaniel - and peace for you too. 1 Quote Link to comment Share on other sites More sharing options...
Innisfree Posted December 30, 2016 Share Posted December 30, 2016 Thinking of you, Nathaniel, and all of your family, and sending hugs and hope. Quote Link to comment Share on other sites More sharing options...
happypamama Posted December 30, 2016 Author Share Posted December 30, 2016 I feel a little better tonight. Little guy is stable. He did get more blood today, so no feeds, but his blood gases have been good. They tried again with the arterial line last night but had no success; they got it in this morning though. They said he was quite happy last night when they were messing with him and that he likes the attention. (Haha, maybe big brother trained him well -- 3yo REALLY liked loving on my belly and talking to him like none of my other toddlers have, and they were all babyholics, so maybe he's just used to a high level of interaction.). He's been resting nicely all day, needing a little less nitric oxide, a tiny bit less oxygen, a little lower on the vent settings. They said not actively getting worse. I can live with that. (I get really nervous when all the settings are at their highest because they have no breathing room, so knowing that they have even a little helps me.) Thank you Hive, for encouraging me. 36 Quote Link to comment Share on other sites More sharing options...
freesia Posted December 30, 2016 Share Posted December 30, 2016 Happy to see a good update. We are praying for Nathaniel and your whole family. He has a lot of folks he may never meet who are pulling for him. 3 Quote Link to comment Share on other sites More sharing options...
JustEm Posted December 30, 2016 Share Posted December 30, 2016 Hugs happypamama. Glad to hear they have wiggle room and he had a restful day. 2 Quote Link to comment Share on other sites More sharing options...
cintinative Posted December 30, 2016 Share Posted December 30, 2016 (edited) I remember how disheartening it can be to get such small amounts of breakmilk. Keep at it! Your body will take time to respond. You had a major surgery, pregnancy complications, a preemie baby, and all this is difficult for the body to just produce milk. Frequency is key (at least 8 times in 24 hrs), plus a hospital pump. Some women need one to make milk. Even the best pumps are not as good as a (term) baby Really late to the party but wanted to agree with this. We ended up renting a hospital grade pump for at least a few months and it was totally worth it. <<Pumping is going well. I'm getting 20-30 mL from each side, and that's really plenty at this point because more will go to waste. I did get a hospital grade pump for home, and it's quieter, gentler, and more efficient. At least he's got plenty of milk available to him, although it's taking over my freezer, LOL. (They only like the little bottles, no bags.)>> Just saw this ^^^ I am so glad to hear this. Sometimes the little things can be encouraging. I had a ridiculous amount of those bottles and bags. You might want to consider a freezer alarm if you don't have one. An open freezer door caused me to lose a lot of milk once and I cried and cried. Hang in there momma!! Edited December 30, 2016 by cintinative 1 Quote Link to comment Share on other sites More sharing options...
BarbecueMom Posted December 30, 2016 Share Posted December 30, 2016 Late to the thread, but I've been thinking of your family often. I have a Nathaniel myself. Hugs to you and hoping for continued improvement. 1 Quote Link to comment Share on other sites More sharing options...
Just Kate Posted December 30, 2016 Share Posted December 30, 2016 (edited) Just read through this thread...please know I'm praying for you mama and sweet little Nathaniel! Edited December 30, 2016 by Just Kate 1 Quote Link to comment Share on other sites More sharing options...
debinindy Posted December 30, 2016 Share Posted December 30, 2016 Here are some hugs for today... :grouphug: :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
MercyA Posted December 30, 2016 Share Posted December 30, 2016 More :grouphug: :grouphug: :grouphug: and prayers. 1 Quote Link to comment Share on other sites More sharing options...
Rachel Posted December 30, 2016 Share Posted December 30, 2016 When we saw him last night, they were trying to put in an arterial line. They tried several times and got it in but couldn't get it to flush. They decided to try again in his ankle after a few hours later, but we decided to head home. He doesn't like all the poking and messing; you can see him squirm and flinch. It's pretty awful not to be able to comfort him at all. He's too little even for a pacifier. They upped his feeds to 2mL every three hours, but of course, they stop his feeds when they give him blood. They're still very very concerned about his lungs; we just don't know how long they'll be able to hold out. Pumping is going well. I'm getting 20-30 mL from each side, and that's really plenty at this point because more will go to waste. I did get a hospital grade pump for home, and it's quieter, gentler, and more efficient. At least he's got plenty of milk available to him, although it's taking over my freezer, LOL. (They only like the little bottles, no bags.) I'm struggling really hard to make sense of it all. I don't understand why God would have performed all the little miracles that even got us to a place where he could have a chance (like me even having a BP cuff because DH broke his back a few weeks ago), only to stop them before our little guy comes home to us, but I obviously don't see everything. I'm really having a hard time. Saying a prayer for comfort and peace. 1 Quote Link to comment Share on other sites More sharing options...
IfIOnly Posted December 30, 2016 Share Posted December 30, 2016 Praying for you mamas and your little ones. Thank you for the updates. 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted December 30, 2016 Share Posted December 30, 2016 Yay for a good day! A little lower on all the gas and vent settings is a positive! I'm glad he is getting the attention he likes too - he's probably acclimated to a lot more noise and poking anyway, it's like a little sibling rite of passage :) Quote Link to comment Share on other sites More sharing options...
happypamama Posted December 30, 2016 Author Share Posted December 30, 2016 Yay for a good day! A little lower on all the gas and vent settings is a positive! I'm glad he is getting the attention he likes too - he's probably acclimated to a lot more noise and poking anyway, it's like a little sibling rite of passage :) I told DS4, age 3, that maybe he helped his little brother because he liked to interact with him so much before he was born, and he beamed. I'm cracking up because they say that nicubabies tend to like it noisy because that's what they're used to. This little guy will fit right in with our household because it is never quiet here! 14 Quote Link to comment Share on other sites More sharing options...
Liz CA Posted December 30, 2016 Share Posted December 30, 2016 (edited) Keeping you and Nathaniel on the prayer list. Hang on Mama. Edited December 30, 2016 by Liz CA 1 Quote Link to comment Share on other sites More sharing options...
displace Posted December 30, 2016 Share Posted December 30, 2016 I'm glad he's stable and the vent settings are a touch better. Praying for him and the family (hugs) 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted December 30, 2016 Share Posted December 30, 2016 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
RioSamba Posted December 30, 2016 Share Posted December 30, 2016 I just prayed for Nathaniel. I loved hearing about your three year old. It's clear that Nathaniel has a wonderful, loving family. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted December 30, 2016 Share Posted December 30, 2016 Praying for him several times a day. Hugs mama. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted December 30, 2016 Share Posted December 30, 2016 Praying for him several times a day. Hugs mama. Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted December 30, 2016 Share Posted December 30, 2016 Praying for you and your sweet baby. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Granny_Weatherwax Posted December 30, 2016 Share Posted December 30, 2016 :grouphug: I just read the thread and wish I could do something more than offer prayers and hugs. 3 Quote Link to comment Share on other sites More sharing options...
Jaybee Posted December 30, 2016 Share Posted December 30, 2016 Thinking of you and Nathaniel today. (And, of course, Arctic Mama and Benjamin.) I check several times a day to see how our new Hive babies are doing. 7 Quote Link to comment Share on other sites More sharing options...
Arctic Bunny Posted December 30, 2016 Share Posted December 30, 2016 Thinking of you and Nathaniel today. (And, of course, Arctic Mama and Benjamin.) I check several times a day to see how our new Hive babies are doing.Me too! Quote Link to comment Share on other sites More sharing options...
Lawyer&Mom Posted December 30, 2016 Share Posted December 30, 2016 I made my annual donation to our NICU today, this year in honor of Nathaniel and Benjamin. Still praying for your little guy. 5 Quote Link to comment Share on other sites More sharing options...
AmandaVT Posted December 30, 2016 Share Posted December 30, 2016 Thinking of you and Nathaniel today. (And, of course, Arctic Mama and Benjamin.) I check several times a day to see how our new Hive babies are doing. Me too - I keep checking in and I've been keeping the Hive babies and their families in my thoughts and prayers. Wish I lived closer so I could help in person! 2 Quote Link to comment Share on other sites More sharing options...
happypamama Posted December 30, 2016 Author Share Posted December 30, 2016 My younger daughters made a playlist/CD of music for their older disabled sister for Christmas. This dd loves music and her sisters are sick of some of the stuff I play for her (that she loves), so they decided to make a playlist with some more "current" songs. They picked all of the songs themselves. As I was listening to the CD, one song jumps out at me, and reminds me of all this disabled dd and I have been through together (seizures, developmental issues, hospital stays, etc.). I hope it doesn't offend...I'm a Christian, but the lyrics "walk through hell with you" don't offend me, because some of the stuff these kids go through is horrible. The song is Stand By You by Rachel Platten. The lyrics that jumped out at me are: Even if we can't find heaven, I'll walk through Hell with you Love, you're not alone, 'cause I'm gonna stand by you. And searching for the lyrics online, I see that I might just have to learn the whole song: Yeah, you're all I never knew I needed And the heart--sometimes it's unclear why it's beating And, love, if your wings are broken We can brave through those emotions, too 'Cause I'm gonna stand by you Here's to the great love mamas have for their babies. Praying for you and your little one as you stand by him. Thank you -- that is beautiful! 1 Quote Link to comment Share on other sites More sharing options...
happypamama Posted December 30, 2016 Author Share Posted December 30, 2016 I made my annual donation to our NICU today, this year in honor of Nathaniel and Benjamin. Still praying for your little guy. Thank you!! So he looked pretty good today. They're continuing to wean him off of the nitric oxide. He got ultrasounds of his belly, heart, and head today. Heart and head aren't back yet, but the belly one says there's something amiss there, probably some sort of blockage. So they're stopping all of his feeds for a while, although of course the IV nutrients will help him grow. Eventually they will do surgery to figure out what is going on in his bowel, but they have to wait until he's able to be off the one type of ventilator, and he needs more healthy lung tissue for that. So keep praying for him! He has a lot of hurdles to cross. 13 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted December 30, 2016 Share Posted December 30, 2016 Continuing to pray. 1 Quote Link to comment Share on other sites More sharing options...
AnnE-girl Posted December 31, 2016 Share Posted December 31, 2016 Continuing to pray! 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted December 31, 2016 Share Posted December 31, 2016 Thank you!! So he looked pretty good today. They're continuing to wean him off of the nitric oxide. He got ultrasounds of his belly, heart, and head today. Heart and head aren't back yet, but the belly one says there's something amiss there, probably some sort of blockage. So they're stopping all of his feeds for a while, although of course the IV nutrients will help him grow. Eventually they will do surgery to figure out what is going on in his bowel, but they have to wait until he's able to be off the one type of ventilator, and he needs more healthy lung tissue for that. So keep praying for him! He has a lot of hurdles to cross. I didn't 'like' your news but yay on the gas improvement! We will be praying the blockage issue is one that is easy to solve and that he will grow much stronger in the interim so he stops scaring his mama :grouphug: Quote Link to comment Share on other sites More sharing options...
Twigs Posted December 31, 2016 Share Posted December 31, 2016 :grouphug: :grouphug: :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
Guest Posted December 31, 2016 Share Posted December 31, 2016 (edited) On a related note - how are you and your family holding up emotionally and physically? Edited December 31, 2016 by Arctic Mama Quote Link to comment Share on other sites More sharing options...
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