happypamama Posted December 31, 2016 Author Share Posted December 31, 2016 On a related note - how are you and your family holding up emotionally and physically? Depends on the day. The boys are generally fine. 14yo DD is more up and down, but that's pretty typical of her anyway. The little ones are loving having my parents here because they have more adults to pay attention to them. I'm up and down a lot because I'm exhausted, but I keep putting one foot in front of the other. 7 Quote Link to comment Share on other sites More sharing options...
Luckymama Posted December 31, 2016 Share Posted December 31, 2016 Just prayed for you guys :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
displace Posted December 31, 2016 Share Posted December 31, 2016 Thinking of you and DS. I'm glad the nitric oxide is going down but sorry they think they have to do surgery! Is that just a best guess or a definite need? :( Quote Link to comment Share on other sites More sharing options...
happypamama Posted December 31, 2016 Author Share Posted December 31, 2016 Thinking of you and DS. I'm glad the nitric oxide is going down but sorry they think they have to do surgery! Is that just a best guess or a definite need? :( It's a definite. They need to go in and see for sure what it is and then make any appropriate corrections. And then there will likely be a second surgery later to finish correcting some things after the first one heals. They're really calm about it because this stuff is so common and pretty routine; it just is unnerving when it's your baby and when he's already so sick. Quote Link to comment Share on other sites More sharing options...
Guest Posted December 31, 2016 Share Posted December 31, 2016 It's a definite. They need to go in and see for sure what it is and then make any appropriate corrections. And then there will likely be a second surgery later to finish correcting some things after the first one heals. They're really calm about it because this stuff is so common and pretty routine; it just is unnerving when it's your baby and when he's already so sick. I can only imagine. Praying for strength for you all. :grouphug: Quote Link to comment Share on other sites More sharing options...
Liz CA Posted December 31, 2016 Share Posted December 31, 2016 Will they wait until he has a little more fat on his tiny bones? I have the perfect excuse now for not getting anything done. Between praying for Nathaniel and Benjamin, there is no time to do much else. And then Arctic Mama is running around instead of resting after her c-section...I had to finally tell her to take a break . ;) I hope you are resting properly??? At least physically. I know your mind must be going 100 miles per hour. Will continue to pray for Nathaniel and your family. 7 Quote Link to comment Share on other sites More sharing options...
displace Posted December 31, 2016 Share Posted December 31, 2016 Continuing thinking and praying for your DS. 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted December 31, 2016 Share Posted December 31, 2016 Continuing to keep y'all in prayer. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
RioSamba Posted December 31, 2016 Share Posted December 31, 2016 I just prayed for Nathaniel, and an extra measure of peace for you. 1 Quote Link to comment Share on other sites More sharing options...
TheReader Posted December 31, 2016 Share Posted December 31, 2016 Continuing to pray for you and Nathanael. Surgery does sound scary, (((hugs))) for that. I know it's routine for them, but nothing is routine for you, and that makes it so hard. (((Hugs))) I think you ought to have received the book by now, hopefully it will help in calming your mind, explaining all the ins and outs, etc. Also, be sure and read the poem in the front dedication page, that little poem is the reason I kept that book for so long. You and your sweet little one are continually in my prayers. 1 Quote Link to comment Share on other sites More sharing options...
StaceyinLA Posted December 31, 2016 Share Posted December 31, 2016 Keeping you all in my prayers. Quote Link to comment Share on other sites More sharing options...
happypamama Posted December 31, 2016 Author Share Posted December 31, 2016 Continuing to pray for you and Nathanael. Surgery does sound scary, (((hugs))) for that. I know it's routine for them, but nothing is routine for you, and that makes it so hard. (((Hugs))) I think you ought to have received the book by now, hopefully it will help in calming your mind, explaining all the ins and outs, etc. Also, be sure and read the poem in the front dedication page, that little poem is the reason I kept that book for so long. You and your sweet little one are continually in my prayers. Yes, it arrived, and I've been reading through it. Thank you so much! It's been helpful to get more info about what the doctors are saying. Survival rate is higher than I thought. And he's made it to 28 weeks so far, ten days old, and the book says that his chances are even better now than they were at first because he's made it this far. That little poem is so sweet and beautiful and comforting too! Thank you! I'm mildly worried about surgery, but mostly I'm bummed that he's not going to get fed for several more days or even a couple of weeks. The one thing I can do for him, and who knows when he'll even be able to have the milk. (My body isn't getting the message that he isn't taking it; my output is still generally rising, to around an ounce per side. But I still have tons in small increments in the freezer to last him several weeks whenever he gets back to feeds and I can split fresh milk into smaller increments if need be, so too much is a blessing.) Keep praying for good lung growth -- everything really seems to hinge on him being able to get off the one kind of vent. I think we can't even kangaroo him until he's off of that one, although I'm not entirely sure. 13 Quote Link to comment Share on other sites More sharing options...
TheReader Posted December 31, 2016 Share Posted December 31, 2016 Definitely praying for his precious lungs to gain and grow and be strong and healthy. ((((Hugs)))) 2 Quote Link to comment Share on other sites More sharing options...
melmichigan Posted December 31, 2016 Share Posted December 31, 2016 I continue to keep Nathaniel (and Benjamin) in my thoughts. I'm sorry that things haven't gone the way everyone hoped with his bowels, but decreased nitric oxide is good. It's itty bitty baby steps right now. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
displace Posted January 1, 2017 Share Posted January 1, 2017 Thinking of you and your DS. I hope his lungs continue to grow and improve. 1 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 1, 2017 Share Posted January 1, 2017 Happypamama, could you donate some of the extra milk until he is able to start taking it? 2 Quote Link to comment Share on other sites More sharing options...
happypamama Posted January 1, 2017 Author Share Posted January 1, 2017 He seems to be making itty bitty steps of progress. They've weaned the nitric oxide off completely, and his oxygen was down quite a bit too (55% instead of 93 where it was last night -- I can see that number before anything else when I walk in, so it was exciting to see it down so much). He had a good, stable day and responded favorably to DH and me doing containment holding. They assured me that the IV nutrition is carefully calibrated and will help him grow until he can start feeds again. (Meanwhile, I got almost 2 full ounces from one side after seeing him, which is rather amusing because it's so far away until he will be able to use that much!) Heart looks okay on the echocardiogram. Cranial u/s says there is a small brain bleed. At this point, we aren't even worried about developmental issues; we just want our little boy to come home to us. Everything else is gravy. They said they will have PT and OT come in to the nicu to work with him/us so that we can get him the best care. But they said there's no guarantee that he will or won't have developmental issues, so we just aren't even thinking about that right now. I got a fair amount of sleep last night so I feel more human, which helps. And I know that at any point things can, and likely will, change, but I'm really grateful for small victories. My parents went back to their house for the night (they'll be back tomorrow, and Monday they will start supervising the homeschooling). A dear friend brought dinner, so we've had a quiet evening, just hanging out and playing games. It's the most I've been relaxed in three weeks, since the first time we saw the MFM team, and our entire world changed. 22 Quote Link to comment Share on other sites More sharing options...
happypamama Posted January 1, 2017 Author Share Posted January 1, 2017 Happypamama, could you donate some of the extra milk until he is able to start taking it? I am not sure. At this point, I have the freezer room, and I don't know if/how long I will be able to pump enough for him, so I'm not quite ready to donate it yet. But if we do run out of room, I will ask about that because I'd love to give back even a little. I'm only a few days into this, and already (and largely thanks to the Hive), it's much less scary than it was three weeks ago, although we have a long way to go. I've seen a couple of moms who are newer to the nicu than I am, and my heart breaks for them. Were they scared, alone, unexpectedly in the nicu? I've got way more social and family support and knowledge than I probably have a right to, and I know without a doubt that I gave him every chance I could (i.e. he got the steroids, etc.), and it's still hard. I can't imagine how much more difficult it would be for it all to be sudden. 5 Quote Link to comment Share on other sites More sharing options...
happypamama Posted January 1, 2017 Author Share Posted January 1, 2017 Praying for little Nathaniel! It sounds like he's slowly making good progress. 💖 I will take his teeny tiny baby steps in the right direction! (His feet -- they're so ridiculously tiny. You can barely see his toes. DH's hands totally dwarf them.) 5 Quote Link to comment Share on other sites More sharing options...
Guest Posted January 1, 2017 Share Posted January 1, 2017 I will take his teeny tiny baby steps in the right direction! (His feet -- they're so ridiculously tiny. You can barely see his toes. DH's hands totally dwarf them.) Awe! We need a picture of those sweet feet sometime. Little baby feet are my favorite! Quote Link to comment Share on other sites More sharing options...
happypamama Posted January 1, 2017 Author Share Posted January 1, 2017 Awe! We need a picture of those sweet feet sometime. Little baby feet are my favorite! When they're not all covered up by bandaging and everything! One nurse did get his footprints when he was two days old, and she made us an ornament with them. So cute! (And nice to have a part of him to bring home and put on our Christmas tree.). I haven't been able to figure out how to upload pics here from my phone. 3 Quote Link to comment Share on other sites More sharing options...
Pippen Posted January 1, 2017 Share Posted January 1, 2017 Happypamama, could you donate some of the extra milk until he is able to start taking it? Perhaps you have a friend or neighbor who has freezer space? 1 Quote Link to comment Share on other sites More sharing options...
happypamama Posted January 1, 2017 Author Share Posted January 1, 2017 Perhaps you have a friend or neighbor who has freezer space? Believe it or not, someone gave us a huge chest freezer a few months ago. We already had one in our basement, but we try not to turn down free stuff, so the second one is out in our barn. They tell me it has tons of space in it still, even though it's got a ton of beef and I don't even know what else in it, so we just need to transfer stuff from the basement freezer to the outside one. Then I will have the entire basement chest freezer (medium size) for milk storage. And if need be, Home Depot can deliver me another one. :) But I am weeks away from that. I fill a gallon ziplock bag with 2 ounce capacity bottles a day, 14-16 bottles a day so far, and they should fit in the chest freezer for a while. Hopefully in about two weeks, he will start taking milk again and then hopefully he will start growing quickly on it. 5 Quote Link to comment Share on other sites More sharing options...
rmtzc2009 Posted January 1, 2017 Share Posted January 1, 2017 Praying for your dear little one!! 1 Quote Link to comment Share on other sites More sharing options...
displace Posted January 1, 2017 Share Posted January 1, 2017 Wow! That's great he's off the nitric oxide and the oxygen is low too! I'm sorry to hear of the brain bleed. I'm sure they discussed it with you and I'll pray it's small. Praying for you all. I'm glad you have such good support and got a little rest. It can do wonders. Great job on the pumping! 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted January 1, 2017 Share Posted January 1, 2017 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted January 1, 2017 Share Posted January 1, 2017 Thanks for the updates. I'll continue praying for more itty bitty baby steps of progress. ;) I'm also glad you were able to get some R & R and hope that continues. May it be a Happy New Year! 1 Quote Link to comment Share on other sites More sharing options...
JustEm Posted January 1, 2017 Share Posted January 1, 2017 Happy New Year. More prayers for progress coming from this household all year long. 2 Quote Link to comment Share on other sites More sharing options...
Guest Posted January 1, 2017 Share Posted January 1, 2017 Happy New Year to Nathaniel. Grow strong lungs, little man. 2 Quote Link to comment Share on other sites More sharing options...
Guest Posted January 1, 2017 Share Posted January 1, 2017 Happy New Year happypamamma, Nathaniel and the rest of the family! We're thinking and praying for you. Quote Link to comment Share on other sites More sharing options...
displace Posted January 2, 2017 Share Posted January 2, 2017 Thinking of you guys 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted January 2, 2017 Share Posted January 2, 2017 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
happypamama Posted January 2, 2017 Author Share Posted January 2, 2017 No major changes today. They tweaked a few vent settings but nothing too big. Rest and grow, little buddy! We're going to try to get his other three brothers up there one at a time this week (no restrictions on sibling visits during flu season, as long as they have no symptoms), and maybe my parents too at some point. My checkup with the MFM team went well. They like my BP readings from the past week and say my incision and everything look great. I can drive in two more days if I want. (The OB who did the c-section said to take someone with me the first time out.). They're keeping a close eye on me wrt PPD, but so far, I'm normal (especially given the nicu challenges). They'll see me again in four more weeks and are sending a full report to my family doctor so she can stay on top of the BP. I do appreciate that since they're high risk doctors, they are making sure no balls get dropped regarding my care. They say rest, hydrate, and pump! 31 Quote Link to comment Share on other sites More sharing options...
JustEm Posted January 2, 2017 Share Posted January 2, 2017 so glad to hear you are getting the care you need and that the baby has given you no curveballs today. many in my family are praying 2 Quote Link to comment Share on other sites More sharing options...
RioSamba Posted January 2, 2017 Share Posted January 2, 2017 I'm glad to hear that you are recovering well! 1 Quote Link to comment Share on other sites More sharing options...
displace Posted January 2, 2017 Share Posted January 2, 2017 Glad to hear your body is physically healing well. Praying for baby steps for DS. 1 Quote Link to comment Share on other sites More sharing options...
Lilaclady Posted January 3, 2017 Share Posted January 3, 2017 Glad you are doing well. Please do rest as it is easy to over exert oneself. Prayers for Nathaniel. 1 Quote Link to comment Share on other sites More sharing options...
MomsintheGarden Posted January 3, 2017 Share Posted January 3, 2017 Good news about the baby steps! Continuing to pray for your family. 1 Quote Link to comment Share on other sites More sharing options...
Just Kate Posted January 3, 2017 Share Posted January 3, 2017 Continuing to lift you and your little Nathaniel up in prayer! 1 Quote Link to comment Share on other sites More sharing options...
melmichigan Posted January 3, 2017 Share Posted January 3, 2017 I'm glad to hear you had a good checkup! 1 Quote Link to comment Share on other sites More sharing options...
happypamama Posted January 4, 2017 Author Share Posted January 4, 2017 No real updates on him today; his instructions say to maybe adjust his IV nutrients a little and just to get him to grow. My parents are rocking the homeschooling grandparent thing. It's really helping that there are two of them, so there's more attention to go around to the 3yo and 5yo too. I still hardly see my other children, but at least it's a load off of my mind to know that they're well cared for and that schoolwork is getting done. As for the medieval history, Mom said right away, "We will do whatever you want us to do, but we want you to be able to do the fun stuff with DSage8." So I will do history with him as I'm able, and we won't worry about it otherwise. :) 22 Quote Link to comment Share on other sites More sharing options...
happypamama Posted January 4, 2017 Author Share Posted January 4, 2017 Oh, and while I was pumping yesterday, DH chatted with the nurse a bunch. (I love all the nurses, but I'm drawn to certain ones, like they just get me, and yesterday's was one of those.). Apparently this hospital has extremely great success with treating retinopathy of prematurity (which Nate is too young even to be concerned about yet); they've got an amazing doctor who is super on top of things and treats things at the very first sign and so blindness is a very rare thing. That was good to hear, hopefully one less challenge he'll have. Also, the pediatric surgeon checks his belly daily, and if it does get worse before the vent situation stabilizes, they have some "band aid" treatments they can do. More stuff that reassures me a bit. How does one go about appreciating the nurses and staff, and what's expected? The social worker brought us some gas vouchers today, and the child life specialist put together holiday gift bags for all the babies. The nurses take photos of him and print them and are just such sweet people. As of yet, he has had a couple of nurses several times, but there's still a pretty high rate of change (like, the nurse who had him today was there his first day, so DH had met her once but I hadn't), and I have yet to see or talk to several of his nighttime nurses because getting there after shift change gets us home late. He had one nurse who was really sweet and who left the footprint ornament for us right before Christmas, but I have yet to see her to thank her. So what is the best way to show them appreciation? Wait a bit until I'm around more and get to know them better? Or small appreciations often? 6 Quote Link to comment Share on other sites More sharing options...
EmseB Posted January 4, 2017 Share Posted January 4, 2017 Oh, and while I was pumping yesterday, DH chatted with the nurse a bunch. (I love all the nurses, but I'm drawn to certain ones, like they just get me, and yesterday's was one of those.). Apparently this hospital has extremely great success with treating retinopathy of prematurity (which Nate is too young even to be concerned about yet); they've got an amazing doctor who is super on top of things and treats things at the very first sign and so blindness is a very rare thing. That was good to hear, hopefully one less challenge he'll have. Also, the pediatric surgeon checks his belly daily, and if it does get worse before the vent situation stabilizes, they have some "band aid" treatments they can do. More stuff that reassures me a bit. How does one go about appreciating the nurses and staff, and what's expected? The social worker brought us some gas vouchers today, and the child life specialist put together holiday gift bags for all the babies. The nurses take photos of him and print them and are just such sweet people. As of yet, he has had a couple of nurses several times, but there's still a pretty high rate of change (like, the nurse who had him today was there his first day, so DH had met her once but I hadn't), and I have yet to see or talk to several of his nighttime nurses because getting there after shift change gets us home late. He had one nurse who was really sweet and who left the footprint ornament for us right before Christmas, but I have yet to see her to thank her. So what is the best way to show them appreciation? Wait a bit until I'm around more and get to know them better? Or small appreciations often? I have been told by many nurses that bringing food treats to have at the nurses station (like a bag of dove chocolates or something, nothing homemade for various reason) was an awesome thing to do. Like if you're at the drug store or grocery store anyway, just pick something up for them and leave it with a note card. 2 Quote Link to comment Share on other sites More sharing options...
happypamama Posted January 4, 2017 Author Share Posted January 4, 2017 I have been told by many nurses that bringing food treats to have at the nurses station (like a bag of dove chocolates or something, nothing homemade for various reason) was an awesome thing to do. Like if you're at the drug store or grocery store anyway, just pick something up for them and leave it with a note card. That's certainly easy enough! I am not sure what their station is like or if they even have one. They all have an assigned bed with a table and everything so they're right next to him 90% of the time, unlike say, when DH was in the hospital, and the nurses congregated at their big desk and weren't in his room 24/7. That sounds like a good question for the social worker, but bringing in nice chocolates and such is certainly easy. Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted January 4, 2017 Share Posted January 4, 2017 I have been told by many nurses that bringing food treats to have at the nurses station (like a bag of dove chocolates or something, nothing homemade for various reason) was an awesome thing to do. Like if you're at the drug store or grocery store anyway, just pick something up for them and leave it with a note card. Candy that is individually wrapped is preferred. Also, a nice note to the staff can go a long way. 1 Quote Link to comment Share on other sites More sharing options...
Lilaclady Posted January 4, 2017 Share Posted January 4, 2017 More thank anything I think a note just nothing one or two things they did is great and mentioning it to their managers go a long way too. You can get a pack of blank thank you cards and just write a brief note as you go along. All the best to you and Baby Nate. 3 Quote Link to comment Share on other sites More sharing options...
displace Posted January 4, 2017 Share Posted January 4, 2017 Good to hear of your comfort with the staff. Thinking of you guys. One day at a time. 1 Quote Link to comment Share on other sites More sharing options...
JustEm Posted January 4, 2017 Share Posted January 4, 2017 I am so glad that you have a wonderful support system both in the hospital and at home to make things easier. 2 Quote Link to comment Share on other sites More sharing options...
mumto2 Posted January 4, 2017 Share Posted January 4, 2017 That's certainly easy enough! I am not sure what their station is like or if they even have one. They all have an assigned bed with a table and everything so they're right next to him 90% of the time, unlike say, when DH was in the hospital, and the nurses congregated at their big desk and weren't in his room 24/7. That sounds like a good question for the social worker, but bringing in nice chocolates and such is certainly easy. I was a long term patient while pregnant years ago. My nurses seemed to really like things like dried fruit etc. My fil brought them all sorts of stuff and the dried cherries were a huge hit. They were all watching their weight! ;) 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted January 4, 2017 Share Posted January 4, 2017 Glad to hear all is going well at the hospital and at home. Sending prayers that it all continues just as nicely! There's a co-worker at school whose youngster (he's a little over one now) has gone to Hershey quite a bit for multiple issues and she raves about the place (doctors and nurses). He's doing quite well now. I'm hoping you have similar results and a year from now this is mostly a great story to tell with a super happy ending. 1 Quote Link to comment Share on other sites More sharing options...
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