I'm sorry I haven't posted, we've been busy preparing for our babies to come home!
Nolan was taken off the gavage tube Friday night, and has been doing great ever since. It was like he needed a reminder that it was his job to eat for himself, and he did not want that tube in! So he began eating again.
They were both a week without caffeine on Monday. Monday, the neonatologist who was there when I delivered wanted their pulsox (pulse oximeter) put back on. They had taken them off on Monday, I think. It's a little band around their foot. The doctor said that they don't necessarily need them on anymore, because their numbers were always 99 or 100, but when they had bradys, it helped to have them on the pulsox to see if it effected the brady level. So, really not a setback.
Nolan and Brooks have been doing a wonderful job with their feedings. I am so proud of what big boys they are becoming. The speech pathologist has been checking in with them since last week. I met with her again yesterday so she could observe me actually feeding them with a bottle, to see if I had any questions and to make sure I knew how to watch their breathing. (Thank goodness for all that daycare experience with my mom!) She said they were doing so well, especially considering their gestational age! They are learning to take breaks while feeding on their own, meaning they know when they need to stop to take some breaths, which is big for babies only 35 weeks! Sometimes they need to be reminded, especially Nolan, but they really do pretty great on their own.
They keep telling us they'll be home soon, and that they'll give us "some" notice, but we just don't know when yet. One of the nurse practitioners told us yesterday that even though the number of bradys they've been having has gone down, they are still having enough to need to be there.
This hospital won't send babies home on machines anymore, which really, I'm kind of glad about. I would not want to have to rush back and put my babies back in the NICU because something happened at home. I know it still COULD happen, but I'd feel better with them coming home as healthy as can be.
Every nurse has been telling us discharge stuff. The biggest thing being to limit exposure of the babies, which I know will be hard because everyone wants to see them. Their immune systems are not strong enough yet, and we have to be careful about people touching them, and they told us to keep tons of antibacterial soap around.
They told us to bring their car seats in and receiving blankets, for the car seat test. So 1 car seat is there and ready to go. They told us to start collecting lots of the necessities- newborn diapers, newborn clothes (our big boy Nolan was never really in premie sizes!), burp cloths, blankets, wipes, all the fun stuff. They also had us sign the consent to have their hospital pictures taken, which they are taken on discharge day in the NICU.
Shane and I are trying to get things ready at home. It's exhausting trying to do things at home, and live at the NICU. I really think it will be easier once they are home. I'm getting tired of people saying "oh, it's only just beginning" when they ask how I am, and I say I'm tired. I know I'll be getting up all night long, I'm already doing that to pump. I know I will be busy all day, I already am. The biggest difference will be that I won't be sitting in a hospital 6 hours a day on top of everything else, or sitting in traffic to get to the hospital. And poor Shane can actually go directly home after work for the first time in months.
A Somewhat Bitter Side Note (which follows the above comment I get from people AND brings out my sarcastic side that I always get in trouble for, so I apologize):
When I was looking up a link for the pulsox, I found this little site about what not to say to premie parents:
http://www.inspire.com/groups/preemie/discussion/what-not-to-say-to-a-preemie-mom-parent/
I understand where a lot of women are coming from on here. There are some things people have said that I know I probably give them my "are you stupid?" look, but honestly, what's important are my babies and how well they are doing. I'm not going to let what ignorant people say bother me, I have more important things to worry about.
The other thing, I think, is that people don't realize you've heard the same things over and over. It doesn't bother you the first, second, or fiftieth time, but maybe the hundredth time, it really gets to you. In my case, it would be the "Why did you have to go to inpatient?" or "why did you have to deliver early?". I don't mind answering this to most people, but people I am close to- I've explained the situation, I've sent you research links in emails, I sent you a link to this blog, if you haven't been paying attention to those things, maybe you don't deserve an answer at this point- and believe me, I won't give you one.
Oh and the other funny one I get is, "...and you'll have 2 of them!" Yes, thank you...I didn't notice.
:)
Showing posts with label bradycardias. Show all posts
Showing posts with label bradycardias. Show all posts
Thursday, March 8, 2012
Sunday, February 26, 2012
34 Weeks
My boys are 34 weeks gestation today!!
Brooks had his cannula taken out yesterday and is showing off without it, staying at 99 or 100 saturation. Nolan continues to do amazingly, he had only 1 brady yesterday, and I think they attributed it to reflux.
Today the brady alarm number was taken down to 80, so the amount of bradys they have will severely decrease. While I was there, Nolan didn't have any and Brooks only had 1 think, and it was while he was eating.
We were also there for the rounds today, where the neonatologist goes around and gets updates on all of the babies. The only thing keeping them from going home at this point is their inability to bottle/breast feed, which is exactly where they are expected to be. We keep on practicing though, and they are definitely getting better.
Nolan is 4 pounds, 13 ounces. Brooks hit the 4 pound mark yesterday and today is 4 pounds, 1 and a half ounces.
It continually gets hard to say goodbye at night. The only thing keeping me from staying longer is that my body starts shutting down around 7:30. My bones hurt, I feel sore in my abdomen, and I just feel exhausted. Again, I'm doing exactly what everyone told me not to do, but I can't help it.
I think I can start driving tomorrow. The only thing (and I say this now when I'm tired, we'll see in the morning when I'm wide awake) keeping me from going to the hospital early tomorrow is the fact that they started giving us discharge information today. I am in a mad rush now to try and get things ready around the house.
It could still be a few weeks till they come home, but they are trying to prepare us: they told us to bring a car seat in, so that when they feel they are ready, they can do the car seat test (spending like an hour and a half in the car seat, hooked up to monitors to make sure their air ways are capable of making it home); they gave us lists and guides of how to care for premies at home; and told us we'll have papers to sign as the time gets closer.
I'm going to try and think of things to help parents prepare for a NICU experience. Luckily, ours has been non-eventful so far. The main thing I can think of is to ask questions and pay attention to what is going on. Shane and I know what every beep, bong, blink, and doorbell ring means- if we didn't, we'd probably go crazy.
I'm so happy our babies are doing well. I continue to pray for their growth, and I hope they can start feeding more often so they can come home!
Brooks had his cannula taken out yesterday and is showing off without it, staying at 99 or 100 saturation. Nolan continues to do amazingly, he had only 1 brady yesterday, and I think they attributed it to reflux.
Today the brady alarm number was taken down to 80, so the amount of bradys they have will severely decrease. While I was there, Nolan didn't have any and Brooks only had 1 think, and it was while he was eating.
We were also there for the rounds today, where the neonatologist goes around and gets updates on all of the babies. The only thing keeping them from going home at this point is their inability to bottle/breast feed, which is exactly where they are expected to be. We keep on practicing though, and they are definitely getting better.
Nolan is 4 pounds, 13 ounces. Brooks hit the 4 pound mark yesterday and today is 4 pounds, 1 and a half ounces.
It continually gets hard to say goodbye at night. The only thing keeping me from staying longer is that my body starts shutting down around 7:30. My bones hurt, I feel sore in my abdomen, and I just feel exhausted. Again, I'm doing exactly what everyone told me not to do, but I can't help it.
I think I can start driving tomorrow. The only thing (and I say this now when I'm tired, we'll see in the morning when I'm wide awake) keeping me from going to the hospital early tomorrow is the fact that they started giving us discharge information today. I am in a mad rush now to try and get things ready around the house.
It could still be a few weeks till they come home, but they are trying to prepare us: they told us to bring a car seat in, so that when they feel they are ready, they can do the car seat test (spending like an hour and a half in the car seat, hooked up to monitors to make sure their air ways are capable of making it home); they gave us lists and guides of how to care for premies at home; and told us we'll have papers to sign as the time gets closer.
I'm going to try and think of things to help parents prepare for a NICU experience. Luckily, ours has been non-eventful so far. The main thing I can think of is to ask questions and pay attention to what is going on. Shane and I know what every beep, bong, blink, and doorbell ring means- if we didn't, we'd probably go crazy.
I'm so happy our babies are doing well. I continue to pray for their growth, and I hope they can start feeding more often so they can come home!
Friday, February 24, 2012
I Think Nolan Wants OUT of The NICU
Our boys are doing so well, still. Everyone in the NICU loves them, and they are still considered "feeders and growers"= all they need to do is learn to eat and grow some more and they can come home. The feeding is going ok. We try breastfeeding once a day and a bottle once a day. The hardest part is the coordination of it all. Their brains don't know they need to breathe/ suck/ and swallow all at the same time. They are getting it, they have good days and bad days. Brooks was really doing well a few days ago (which is funny because he was Baby A in all the biophysical profiles, so he always did everything first anyway), and yesterday I was telling the nurse this. Well, Nolan must of heard because he did not want to be shown up by his brother and did fabulously yesterday. I even heard him gulp, so he was actually able to swallow. He has also pulled out his feeding tube 3 times in the past 2 days. The nurse said he probably feels like it's not supposed to be there. He's done! He pulled it out once when Shane was holding him and waved it in the air, very proud of himself.
Brooks weighs 3 lb. 14 oz. and Nolan is up to 4 lb. 11 oz., which is great weight gain.
They both continue to have bradycardias, but Nolan only has a few. Next week, when they are 34 weeks gestation, the heart rate limit drops to 80, right now it's set at 90. So the alarm goes off when their heart rate goes below that. Most of Nolan's are in the 80's, so next week, they won't count as bradys. Brooks' are in the 80's sometimes, but they have dropped to the 60's and a few in the 50's. But again, he recovers quickly on his own, and it is usually when he is doing something.
It is still getting harder and harder to leave. They know the sounds of our voices so well now, and I swear I think Nolan's lip quivers when we tell him goodnight. Brooks always opens his eyes and I can't leave when his eyes are open.
Shane and I are both exhausted. When we're home, I'm sleeping, eating, and pumping- definitely not getting the rest I was told to, but how can anyone? Shane has to go to work. I need to get the nursery ready, but I feel guilty not being at the NICU. At this point, I have to wait for a ride though, since I still have another week to go until I can drive. We are both delirious, half falling asleep at the NICU, trying to get in cars that aren't ours when we are leaving, and I feel like I can't form sentences properly when I'm talking. It's all worth it, I know you are given only what you can handle, and again, we are so incredibly lucky.
But my sweet Nolan wants to go home (and Brooks too) and I can't wait to tell them they can.
Brooks weighs 3 lb. 14 oz. and Nolan is up to 4 lb. 11 oz., which is great weight gain.
They both continue to have bradycardias, but Nolan only has a few. Next week, when they are 34 weeks gestation, the heart rate limit drops to 80, right now it's set at 90. So the alarm goes off when their heart rate goes below that. Most of Nolan's are in the 80's, so next week, they won't count as bradys. Brooks' are in the 80's sometimes, but they have dropped to the 60's and a few in the 50's. But again, he recovers quickly on his own, and it is usually when he is doing something.
It is still getting harder and harder to leave. They know the sounds of our voices so well now, and I swear I think Nolan's lip quivers when we tell him goodnight. Brooks always opens his eyes and I can't leave when his eyes are open.
Shane and I are both exhausted. When we're home, I'm sleeping, eating, and pumping- definitely not getting the rest I was told to, but how can anyone? Shane has to go to work. I need to get the nursery ready, but I feel guilty not being at the NICU. At this point, I have to wait for a ride though, since I still have another week to go until I can drive. We are both delirious, half falling asleep at the NICU, trying to get in cars that aren't ours when we are leaving, and I feel like I can't form sentences properly when I'm talking. It's all worth it, I know you are given only what you can handle, and again, we are so incredibly lucky.
But my sweet Nolan wants to go home (and Brooks too) and I can't wait to tell them they can.
Wednesday, February 22, 2012
Day 9 Update
Both boys continue to make progress. They are both gaining weight and they have both had their food intake increased. Nolan is now on 40 ccs and Brooks is on 35.
Brooks is on a nasal cannula now. He is not getting oxygen, just air to help his brain remember to breathe, especially when he is eating/ pooping/ etc. The neonatologist expected this to happen to both of them, it is not a setback, just some help to reduce his bradys (bradycardias). Both boys continue to have a few bradys. Most of Nolan's are never "real"- his heart rate doesn't drop very far, and he recovers quickly on his own, or his wire is not hooked up properly. Brooks has a few more than Nolan, but again they don't drop very far and he recovers quickly on his own (neither one has never needed assistance to recover). Next week, when they are 34 weeks, the heart rate limit drops to 80, and most of their bradys won't count at all then. The nasal cannula isn't as uncomfortable as the CPAP, the tubes are much smaller and it is just a small puff of air vs. a continuous pressure of air. You can tell, because in his first pictures, his nose is so swollen and smushed from the pressure.
We are working on sucking- the nurses are working with a bottle when they seem to be searching, and we are trying breastfeeding when I am there. It's hard, because I keep being told to rest from my month-long stint in OB High Risk, but I want to help my babies grow so they can come home. It's hard not to stay in the NICU for 4+ hours when you have 2. We can only pick them up right now during their care times, as to not overstimulate them (one time I did have Brooks for a long time, and some of his vital signs started going out of whack), and you want to give them both equal time.
To add to my weirdness, I have developed what appears to be an allergic reaction to either the tape they used during the C-section, or the binder I used afterwards for support. I have a rash that started on my hip bones, and has wrapped around to my back and spread to my stomach. It itches like crazy. I went back to my doctor to make sure it wasn't effecting my incision, which it's not, but she can't believe how bad it looks. She called the maternity ward to see what they use on patients who react like this, and she referred to it as a "weird one"- something I think she has said to everyone on the phone she has ever talked to on my behalf.
Emotionally, Shane and I are doing pretty well. I thought for sure we would have both broken down at some point after all these months of stress and problems. I think we are both so grateful and thankful for how lucky we are at this point, we have put everything else behind us.
It was weird, because last night Shane didn't get to the NICU till a little later, because he had to work. The NICU closes from 6:30-7:30 for shift changes, and I think he got there around 5. So we thought we'd go get something to eat and come back. Normally, we just run up to the cafeteria or get something quick out, but last night we decided to eat somewhere and try to relax a little bit, but nothing fancy. So we're sitting at this big table, just the 2 of us, and I asked him if he felt like we were missing something. "I know we never physically had them anywhere with us other than when they were still inside me, but I feel wrong being here without them." I said. He said he felt the exact same way, and that he felt kind of stressed being there. I agreed, and we both tried to laugh it off. We were both anxious to get back to them.
It's hard not being able to say goodnight, but it's hard being there that late after being there all day. I can feel my body start to ache and we both become a little delirious. I hate being without them, and it's getting harder and harder to say goodbye to them now, which I thought would be the opposite. Every night we tell them how much we love them and to try and grow big and strong so they can come home with us. <3
Brooks is on a nasal cannula now. He is not getting oxygen, just air to help his brain remember to breathe, especially when he is eating/ pooping/ etc. The neonatologist expected this to happen to both of them, it is not a setback, just some help to reduce his bradys (bradycardias). Both boys continue to have a few bradys. Most of Nolan's are never "real"- his heart rate doesn't drop very far, and he recovers quickly on his own, or his wire is not hooked up properly. Brooks has a few more than Nolan, but again they don't drop very far and he recovers quickly on his own (neither one has never needed assistance to recover). Next week, when they are 34 weeks, the heart rate limit drops to 80, and most of their bradys won't count at all then. The nasal cannula isn't as uncomfortable as the CPAP, the tubes are much smaller and it is just a small puff of air vs. a continuous pressure of air. You can tell, because in his first pictures, his nose is so swollen and smushed from the pressure.
We are working on sucking- the nurses are working with a bottle when they seem to be searching, and we are trying breastfeeding when I am there. It's hard, because I keep being told to rest from my month-long stint in OB High Risk, but I want to help my babies grow so they can come home. It's hard not to stay in the NICU for 4+ hours when you have 2. We can only pick them up right now during their care times, as to not overstimulate them (one time I did have Brooks for a long time, and some of his vital signs started going out of whack), and you want to give them both equal time.
To add to my weirdness, I have developed what appears to be an allergic reaction to either the tape they used during the C-section, or the binder I used afterwards for support. I have a rash that started on my hip bones, and has wrapped around to my back and spread to my stomach. It itches like crazy. I went back to my doctor to make sure it wasn't effecting my incision, which it's not, but she can't believe how bad it looks. She called the maternity ward to see what they use on patients who react like this, and she referred to it as a "weird one"- something I think she has said to everyone on the phone she has ever talked to on my behalf.
Emotionally, Shane and I are doing pretty well. I thought for sure we would have both broken down at some point after all these months of stress and problems. I think we are both so grateful and thankful for how lucky we are at this point, we have put everything else behind us.
It was weird, because last night Shane didn't get to the NICU till a little later, because he had to work. The NICU closes from 6:30-7:30 for shift changes, and I think he got there around 5. So we thought we'd go get something to eat and come back. Normally, we just run up to the cafeteria or get something quick out, but last night we decided to eat somewhere and try to relax a little bit, but nothing fancy. So we're sitting at this big table, just the 2 of us, and I asked him if he felt like we were missing something. "I know we never physically had them anywhere with us other than when they were still inside me, but I feel wrong being here without them." I said. He said he felt the exact same way, and that he felt kind of stressed being there. I agreed, and we both tried to laugh it off. We were both anxious to get back to them.
It's hard not being able to say goodnight, but it's hard being there that late after being there all day. I can feel my body start to ache and we both become a little delirious. I hate being without them, and it's getting harder and harder to say goodbye to them now, which I thought would be the opposite. Every night we tell them how much we love them and to try and grow big and strong so they can come home with us. <3
Subscribe to:
Posts (Atom)