...about how my children and I are doing. I have a new blog, which I am (for the moment) keeping somewhat ungoogle-able and not divulging quite as much personal information as I did here, as it largely involves my children and their private, medical information, etc.
Anyway, I'll leave this link up for a few days, then take it down. If you missed it, feel free to message me or leave a comment.
Saturday, March 16, 2013
Thursday, August 9, 2012
6 months old!
Hi....
Yes, we're all still alive, and yes, we're incredibly busy! My boys are thriving. Atticus has had some health problems requiring a few more hospitalizations and surgeries, but we think all of that is in the past now. Damien hasn't even had so much as a cold.
They're so big now--Atticus has more than tripled his birthweight and is finally on the regular (adjusted) growth charts. Damien is not about to accept the title of "little brother" and has eaten his merry way into the 85th percentile for height, and 43rd for weight.
They both make adorable talk-y noises, have big huge grins, despise tummy time, roll over, put things in their mouth, etc. Damien can sit unassisted, though Atticus cannot. (However, since Atticus has *still* spent more time in the hospital than out of it, including nearly 4 whole weeks from ages 3.5-4.5 months being intubated and under heavy sedation, I think he's doing simply amazingly well.)
I still think of you all and occasionally have time to read a blog or two. If any of you are on Facebook and would like to get updates from there, let me know!
Yes, we're all still alive, and yes, we're incredibly busy! My boys are thriving. Atticus has had some health problems requiring a few more hospitalizations and surgeries, but we think all of that is in the past now. Damien hasn't even had so much as a cold.
They're so big now--Atticus has more than tripled his birthweight and is finally on the regular (adjusted) growth charts. Damien is not about to accept the title of "little brother" and has eaten his merry way into the 85th percentile for height, and 43rd for weight.
They both make adorable talk-y noises, have big huge grins, despise tummy time, roll over, put things in their mouth, etc. Damien can sit unassisted, though Atticus cannot. (However, since Atticus has *still* spent more time in the hospital than out of it, including nearly 4 whole weeks from ages 3.5-4.5 months being intubated and under heavy sedation, I think he's doing simply amazingly well.)
I still think of you all and occasionally have time to read a blog or two. If any of you are on Facebook and would like to get updates from there, let me know!
Wednesday, April 4, 2012
Atticus is home!
I just wanted to let you all know that, on April 1st, aka Day 62, aka 2 months 1 day, my sweet Atticus came home. He's on oxygen, a pulse ox, and has suction and of course his G-tube. I call him my Bionic Baby. (Amongst other things--both of my boys have a million pet names.)
Taking care of him is, frankly, challenging. He's not very portable and is on a very strict feeding schedule. (He was in the NICU for so long because he has reflux and difficulty protecting his airway, so had several choking/brady episodes. The NJ attempts failed numerous times, he's too little for a Nissen, and it's too soon for a GJ. So we're just feeding him small amounts, very slowly.) Balancing him and Damien is difficult. I've had my mother and grandmother both help "babysit" (while I'm at home!), and my husband has taken more FMLA time. I don't know what I'll do once he goes back to work.
It's so worth it, though.
I love having both my little men in my own home, in my own arms. They're the best thing ever!
Taking care of him is, frankly, challenging. He's not very portable and is on a very strict feeding schedule. (He was in the NICU for so long because he has reflux and difficulty protecting his airway, so had several choking/brady episodes. The NJ attempts failed numerous times, he's too little for a Nissen, and it's too soon for a GJ. So we're just feeding him small amounts, very slowly.) Balancing him and Damien is difficult. I've had my mother and grandmother both help "babysit" (while I'm at home!), and my husband has taken more FMLA time. I don't know what I'll do once he goes back to work.
It's so worth it, though.
I love having both my little men in my own home, in my own arms. They're the best thing ever!
Thursday, March 8, 2012
And on the 37th Day...
37 days after he was born, and my Atticus has his face all to himself. No oxygen support, and no (facial) feeding tube. No stickers on the side of his face to hold things in place. No bili sunglasses. Not even a hat. Just his adorable face.
Come home, baby Atticus!
Damien celebrated his 37th day (and night...) with the worst reflux we've had yet. If we put him down for even one minute, he cries or vomits. (Or both.) I got no sleep at all last night, and my mother had a rough time of it baby sitting while I visited the NICU.
Oh my word, what I wouldn't give to be kept up at night by both my babies' screams under one roof.
Come home, baby Atticus!
Damien celebrated his 37th day (and night...) with the worst reflux we've had yet. If we put him down for even one minute, he cries or vomits. (Or both.) I got no sleep at all last night, and my mother had a rough time of it baby sitting while I visited the NICU.
Oh my word, what I wouldn't give to be kept up at night by both my babies' screams under one roof.
Sunday, March 4, 2012
I hate the NICU
Horrible, horrible day for Atticus. His feeds aren't progressing, bowel is hypoactive, so will need TPN for *at least seven more days*. Fuck. So for the second time they tried to give him a PICC line, and once again failed miserably. And he got so upset (those fuckers didn't sedate him enough, I'm guessing) that he extubated himself. So they tried him off the vent and he needed to go back on after 40 minutes. I'm so upset. We've gone completely backwards since surgery. I feel like I'm never getting him home--they're now talking about drastic measures (IMO, especially since he was on room air--not even a cannula!--at the other hospital) like jaw surgery to open his airway some. I just want him safe and home
Thursday, March 1, 2012
Happy One Month
Yesterday was my boys' one-month birthday. Impossible to believe that.
Atticus's surgery went extremely well. No airway abnormalities (although he does have a slightly small trachea...but then again, he is a slightly small little dude), intestines easy to place, perfect little G-tube button. OR was running behind, so we spent much more time waiting for him to get into surgery than to get out of it. I go to visit him soon, but as of my last call to the NICU, he was doing well. On pain meds but somewhat awake, and weaning himself off the vent.
Damien was an absolute angel during the wait. He's a very vocal little guy, lots of grunts and coos. Everyone in the waiting room knew we had another baby, and several people told me how cute he is. Which, why yes indeed. But he didn't throw a single fit or cry except briefly when he was hungry.
I can't wait to have both of my boys under our own roof. And to hold them both at the same time, something I have yet to do.
Atticus's surgery went extremely well. No airway abnormalities (although he does have a slightly small trachea...but then again, he is a slightly small little dude), intestines easy to place, perfect little G-tube button. OR was running behind, so we spent much more time waiting for him to get into surgery than to get out of it. I go to visit him soon, but as of my last call to the NICU, he was doing well. On pain meds but somewhat awake, and weaning himself off the vent.
Damien was an absolute angel during the wait. He's a very vocal little guy, lots of grunts and coos. Everyone in the waiting room knew we had another baby, and several people told me how cute he is. Which, why yes indeed. But he didn't throw a single fit or cry except briefly when he was hungry.
I can't wait to have both of my boys under our own roof. And to hold them both at the same time, something I have yet to do.
Wednesday, February 29, 2012
Surgery
Atticus is having surgery in 4 hours (if the OR is on time). Please keep him in your thoughts.
Sunday, February 26, 2012
Eh, never mind
Apparently, "going private" means "quitting" around here.
I don't know how frequent I will continue to blog, so I'll just stay here.
Having Damien at home has been absolutely wonderful. Everything I ever hoped it would be. (Even though he has some bad nights, like last night, when I find myself saying, "Sweetheart, what on earth can I do to get you to quit crying?")
Atticus is still in the NICU. He has a microdeletion on one of his chromosomes which caused his cleft palate and small jaw, and that's really all I want to say about that, because he's perfect to us. He will be having surgery sometime this week, to get a g-tube and to fix the malrotation of his intestines. Hopefully he will come home soon after that. He has been checked out very thoroughly, and his heart, kidneys, eyes, ears, etc. are perfect. So our problem is feeding, and that he desats with some frequency due to obstructive apnea. (His tongue falls back into his throat--this should fix itself as his mouth/jaw grows, but for now he is back on oxygen and will probably come home with some, at least for sleeping.)
Balancing having one baby at home and one in the NICU has been very difficult. I can drive again now though, thank goodness.
Neither of my babies can effectively breastfeed, so I am pumping around the clock for them. Pumping sucks, but it's worth it to give my boys antibodies and nutrition. My supply is enough for them right now.
Atticus clocked in at 4 lbs 13.6 oz last night, which is awesome. Damien sees his pediatrician for a weightcheck on Tuesday. (He was 6 lb 14 oz at his last check, but I kind of cheated because I'd fed him only an hour before, so he was probably only 6 lb 12ish.) He has thrived at home, and I truly believe that, when we get Atticus home, he will thrive too.
I don't know how frequent I will continue to blog, so I'll just stay here.
Having Damien at home has been absolutely wonderful. Everything I ever hoped it would be. (Even though he has some bad nights, like last night, when I find myself saying, "Sweetheart, what on earth can I do to get you to quit crying?")
Atticus is still in the NICU. He has a microdeletion on one of his chromosomes which caused his cleft palate and small jaw, and that's really all I want to say about that, because he's perfect to us. He will be having surgery sometime this week, to get a g-tube and to fix the malrotation of his intestines. Hopefully he will come home soon after that. He has been checked out very thoroughly, and his heart, kidneys, eyes, ears, etc. are perfect. So our problem is feeding, and that he desats with some frequency due to obstructive apnea. (His tongue falls back into his throat--this should fix itself as his mouth/jaw grows, but for now he is back on oxygen and will probably come home with some, at least for sleeping.)
Balancing having one baby at home and one in the NICU has been very difficult. I can drive again now though, thank goodness.
Neither of my babies can effectively breastfeed, so I am pumping around the clock for them. Pumping sucks, but it's worth it to give my boys antibodies and nutrition. My supply is enough for them right now.
Atticus clocked in at 4 lbs 13.6 oz last night, which is awesome. Damien sees his pediatrician for a weightcheck on Tuesday. (He was 6 lb 14 oz at his last check, but I kind of cheated because I'd fed him only an hour before, so he was probably only 6 lb 12ish.) He has thrived at home, and I truly believe that, when we get Atticus home, he will thrive too.
Monday, February 13, 2012
Damien update and going private
Tomorrow, my boys turn two weeks old. If Damien gains weight tonight, he can come home tomorrow! Yay! Atticus will be transferred to the children's hospital once Damien is home, where he can get more specialized care, particularly on eating.
I'll be going private from here on out. To keep reading, either leave your email in the comments on this post or the last one, or else email it to me at marissaDOTaDOTcATgmailDOTcom.
Thanks again for all the thoughts and prayers.
I'll be going private from here on out. To keep reading, either leave your email in the comments on this post or the last one, or else email it to me at marissaDOTaDOTcATgmailDOTcom.
Thanks again for all the thoughts and prayers.
Saturday, February 11, 2012
Going private
I'm trying to figure out how to make my blog private.
Those of you who have done it, how did you do it and how did you let certain people read it?
My boys are doing ok, still in the NICU and still facing a lot of challenges. Because this is about them now, I no longer feel comfortable being public, but don't want to leave blogging altogether.
Those of you who have done it, how did you do it and how did you let certain people read it?
My boys are doing ok, still in the NICU and still facing a lot of challenges. Because this is about them now, I no longer feel comfortable being public, but don't want to leave blogging altogether.
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