I'm becoming more and more convinced that Greyson has acid reflux. Over the past few days I've been studying him while he eats (or to be more accurate: while food is being deposited in his stomach) and the boy looks uncomfortable. About 15 min after he starts eating he gets all red faced and rears his head back and arches his back. He grunts and whines and just looks pained then his stats drop and gets all waxy or purple-gray. It's not a good look for him.
He started on the Zantac yesterday at 5:00pm and it should take a few days to see some improvement. You can bet I'll be watching him like a hawk!
He is still nursing great and I'm hoping that Thursday (when he is 34 weeks gestation age*)we will try bottle feeding too - that way we can see how much he is eating. Right now his is still getting at least 1/2 of his feeds via the ng** tube even after nursing and full feeds through it when I'm not there. I'm looking forward to when they remove the ng tube. The ng tube is just exacerbating the problem because with the tube he cannot completely close his esophagus which allows more reflux. The poor little man just can't win.
*until his due date no one cares how long since he was born - everything is based on gestational age. So right now he is considered 33 weeks old. Babies don't develop the reflexes to coordinate sucking, swallowing and breathing until 34 weeks. When Greyson nurses it goes like this: suck, suck, suck, pant, pant, pant, swallow, suck, suck, suck, suck, forget to breathe, stats drop, get patted on the back, pant, pant, pant, swallow, repeat. It's quite the process.
**ng = nasal gastric
Tuesday, December 30, 2008
Monday, December 29, 2008
Because We Can't Have Two Good Days In A Row.
It just doesn't work like that. Greyson had a great day yesterday so today is not so great. Greyson has been having lots of spells today. LOTS. I think that his caffine level has not been adjusted to match his weight increase. He has been growing a lot this week and its catching up with him.
I'm just hoping that he grows out of this soon. I can't handle many more days with spells like this.
On the good news side, he is still a great nurser. Keep that up little man!
UPDATE: The nurse practitioner decided that Greyson may have Acid Reflux. So he's starting on Zantac. Crazy.
I'm just hoping that he grows out of this soon. I can't handle many more days with spells like this.
On the good news side, he is still a great nurser. Keep that up little man!
UPDATE: The nurse practitioner decided that Greyson may have Acid Reflux. So he's starting on Zantac. Crazy.
Sunday, December 28, 2008
Changing
Greyson is changing before our eyes. Everyday when I go up to see him he is different in some way. It is amazing to think that he should still be in the womb right now and all these changes would be going on without us getting to see it. Greyson is getting chubbier and more alert. I'm beginning to learn his signals and how to tell if he is really having a destat or if the monitors are just not picking up correctly. I'm trying to take all my cues from him. It is getting easier to go to the NICU now that I can hold him when ever I want. I love spending all my time up with him. When all I could do was stand next to the isolette and stare at my baby it was really hard and I could only do it for a few hours. Now, I'd be up there 24/7 if I didn't need to do things like sleep, eat and take care of my dog and husband.
I am so ready for him to come home so I CAN spend all my time with him and watch him change as time goes by.
I am so ready for him to come home so I CAN spend all my time with him and watch him change as time goes by.
He's Growing Like A Weed!
Our little man is growing up! Here's proof:
- On Christmas Day Greyson began nursing! So far we have only done it once a day and he is still getting full feeds via his ng tube, but he is "laching on" beautifully. Greyson really "gets" how to nurse - I just hope he makes a smooth transition to bottles so he can get off the ng tube soon. The sooner he starts eating on his own, the sooner he can go home!
- Over the past 48 hours he has only had 1 major destat where his O2 level dropped below 40. That is a major improvement so they are SLOWLY decreasing the amount of flow in his cannula. He is down to .3 liters. I'm so glad they are doing it slowly - last time they decreased him too quickly and he had problems.
- He is actually growing! Greyson is up to 4 lbs and 9 oz. Actually he is only 2 grams away from being 4 lbs 10 oz. I'm expecting him to be 5 pounds really soon. Plus, he is getting chubby cheeks! I mean, look at them!
- And then there is this! Michael got our little man giggling with a little tickle. We are falling deeper and deeper in love with Greyson everyday!
- On Christmas Day Greyson began nursing! So far we have only done it once a day and he is still getting full feeds via his ng tube, but he is "laching on" beautifully. Greyson really "gets" how to nurse - I just hope he makes a smooth transition to bottles so he can get off the ng tube soon. The sooner he starts eating on his own, the sooner he can go home!
- Over the past 48 hours he has only had 1 major destat where his O2 level dropped below 40. That is a major improvement so they are SLOWLY decreasing the amount of flow in his cannula. He is down to .3 liters. I'm so glad they are doing it slowly - last time they decreased him too quickly and he had problems.
- He is actually growing! Greyson is up to 4 lbs and 9 oz. Actually he is only 2 grams away from being 4 lbs 10 oz. I'm expecting him to be 5 pounds really soon. Plus, he is getting chubby cheeks! I mean, look at them!
- And then there is this! Michael got our little man giggling with a little tickle. We are falling deeper and deeper in love with Greyson everyday!
Saturday, December 27, 2008
Finishing Touches
We have no idea when Greyson will be coming home so we decided that this weekend we should get his room finished just in case they spring him from the NICU on short notice. Man, am I glad I was determined to get as much done as possible before Thanksgiving. The reason for that is I didn't want to be so massively pregnant that I couldn't help...instead by Thanksgiving I was on bedrest.
Really the only things left to do in his room are hemming the curtains, making the crib skirt (which may not ever get made), finishing off a throw pillow or two for the twin bed and painting the trees on the wall. Which is what we are doing this weekend! Michael is in there right now with an opaque projector tracing his drawing of Greyson's Tree on to the wall. Then tonight or tomorrow we will paint it. I'm very excited to see this project completed. I'll post pictures as soon as there is something to take photos of!
Really the only things left to do in his room are hemming the curtains, making the crib skirt (which may not ever get made), finishing off a throw pillow or two for the twin bed and painting the trees on the wall. Which is what we are doing this weekend! Michael is in there right now with an opaque projector tracing his drawing of Greyson's Tree on to the wall. Then tonight or tomorrow we will paint it. I'm very excited to see this project completed. I'll post pictures as soon as there is something to take photos of!
Wednesday, December 24, 2008
Splish Splash!
Today we were taught how to give Greyson a bath. It was great. I loved seeing my naked baby! He was just so cute and so alert in the tub and as we were getting him dressed again.
In his tiny tub getting soaped up.
All clean and wrapped up in dad's arms.
Dressed and ready for the day. Love the bed head!
He is still having some spells, but the doctor came in and said that with as severe as his premature lung disease was that all in all his is doing pretty good. They hope to have him off all the oxygen again soon. I'm hoping for really, really soon!
In his tiny tub getting soaped up.
All clean and wrapped up in dad's arms.
Dressed and ready for the day. Love the bed head!He is still having some spells, but the doctor came in and said that with as severe as his premature lung disease was that all in all his is doing pretty good. They hope to have him off all the oxygen again soon. I'm hoping for really, really soon!
Tuesday, December 23, 2008
Having a Sad Day...
Yesterday was a really good day so inevitably, today is a much harder day. I'm just having a sad day. Greyson going back on the cannula hurts, but what hurts more is that he had more spells and dips when I was holding him. It hurts my heart that today, my being with him was making it harder for him. What do you do as a mom when holding your child is harder on him? It's not supposed to work like that... Because I didn't know what else to do I put him in his bassinet and went home to cry and just let myself be sad.
I've been struggling with being sad since Greyson was born. Sad that my little man was so little and having trouble breathing. Sad that it was completely out of my hands, but still feeling guilty for not being able to keep him safe inside me longer. Sad because just a few more weeks or days inside would have made things so much easier on him. Sad because I missed his birth and that it was 70 hours after he was born before I could hold him. Sad because I still haven't nursed him. Because I didn't get to have him place on my chest right after he was born so we could bond. Sad because I'm worried we haven't bonded the way we are supposed to. I'm sad because I don't have him at home with me, so I feel like I'm living with double life. One when I'm with him and the other where I'm living this fake "pre-Greyson" life at home. It is so strange being a mother without your baby.
On our fridge I have magnetic letters spelling his name and how old he is. At first it made me happy, seeing him get older and better everyday. But today just makes me feel cheated out of 23 days with him. That's 23 days that he was away from me. 23 days that I don't get with him near me and 23 days less that I'll have before having to leave him again to go back to work. I'm sad because the social worker told me earlier this week that Greyson cannot go to day care for at least 6 months, preferably a year because babies as premature as he is are so much more susecptible to things. Not only shouldn't he go to day care, but we shouldn't take him to crowded places like malls or parties for that long either. I'm sad because I have no idea what we are going to do. Neither Michael nor I can quit our jobs, but I can't put him at risk either. I'm so sad because it shouldn't be this hard to be a good mom. All I ever, ever wanted to be was a mom and today I just feel so bad at it. Lost and bad at it.
I haven't let myself really be this sad since he was born - trying to be strong for my baby, but today I just can't be anymore. My heart hurts and I've been crying for the past hour (two hours) and right now it's the only thing I can do. I can't make my baby better. I can't get back those stolen 23 days or the countless more that are before us. I can't take back my stupid placenta previa - I am so mad that I developed that. I'm even more mad that even though in the textbooks I had the least severe type of previa it still got so bad so fast. I am mad that my body wouldn't stop bleeding. I'm mad that according to those textbooks I should have been able to carry him to term or at least much longer than I did. I'm mad that he had to be born at 29 weeks, that we couldn't hold out to 32 or even 30 weeks... I'm mad that my baby has to work so hard because of that. I'm mad that I've now watched my sweet Greyson's lips go blue more times than I want to think about. I'm mad because I can't do anything but pump and even that isn't going as well this week and it did last week. I'm mad because I can't make my baby better.
And I'm scared. I'm scared about what is going to happen. About figuring out how to keep him safe when he finally does get to come home. And I am scared for my little guy. I'm scared because one second he is rosy and cherub-like in my arms and the next moment his skin is dusty and sallow because he isn't getting enough oxygen. I'm sacred that it will keep happening. I'm scared that it will cause him problems down the road. I am so, so scared of losing him. I know that he is doing so much better than he was 23 days ago, but I don't think I've let out how scared for him I've been. I kept trying to only look at the positives, but really in the back of my head I've been so scared - bone scared.
Scared, sad and angry.
I've been struggling with being sad since Greyson was born. Sad that my little man was so little and having trouble breathing. Sad that it was completely out of my hands, but still feeling guilty for not being able to keep him safe inside me longer. Sad because just a few more weeks or days inside would have made things so much easier on him. Sad because I missed his birth and that it was 70 hours after he was born before I could hold him. Sad because I still haven't nursed him. Because I didn't get to have him place on my chest right after he was born so we could bond. Sad because I'm worried we haven't bonded the way we are supposed to. I'm sad because I don't have him at home with me, so I feel like I'm living with double life. One when I'm with him and the other where I'm living this fake "pre-Greyson" life at home. It is so strange being a mother without your baby.
On our fridge I have magnetic letters spelling his name and how old he is. At first it made me happy, seeing him get older and better everyday. But today just makes me feel cheated out of 23 days with him. That's 23 days that he was away from me. 23 days that I don't get with him near me and 23 days less that I'll have before having to leave him again to go back to work. I'm sad because the social worker told me earlier this week that Greyson cannot go to day care for at least 6 months, preferably a year because babies as premature as he is are so much more susecptible to things. Not only shouldn't he go to day care, but we shouldn't take him to crowded places like malls or parties for that long either. I'm sad because I have no idea what we are going to do. Neither Michael nor I can quit our jobs, but I can't put him at risk either. I'm so sad because it shouldn't be this hard to be a good mom. All I ever, ever wanted to be was a mom and today I just feel so bad at it. Lost and bad at it.
I haven't let myself really be this sad since he was born - trying to be strong for my baby, but today I just can't be anymore. My heart hurts and I've been crying for the past hour (two hours) and right now it's the only thing I can do. I can't make my baby better. I can't get back those stolen 23 days or the countless more that are before us. I can't take back my stupid placenta previa - I am so mad that I developed that. I'm even more mad that even though in the textbooks I had the least severe type of previa it still got so bad so fast. I am mad that my body wouldn't stop bleeding. I'm mad that according to those textbooks I should have been able to carry him to term or at least much longer than I did. I'm mad that he had to be born at 29 weeks, that we couldn't hold out to 32 or even 30 weeks... I'm mad that my baby has to work so hard because of that. I'm mad that I've now watched my sweet Greyson's lips go blue more times than I want to think about. I'm mad because I can't do anything but pump and even that isn't going as well this week and it did last week. I'm mad because I can't make my baby better.
And I'm scared. I'm scared about what is going to happen. About figuring out how to keep him safe when he finally does get to come home. And I am scared for my little guy. I'm scared because one second he is rosy and cherub-like in my arms and the next moment his skin is dusty and sallow because he isn't getting enough oxygen. I'm sacred that it will keep happening. I'm scared that it will cause him problems down the road. I am so, so scared of losing him. I know that he is doing so much better than he was 23 days ago, but I don't think I've let out how scared for him I've been. I kept trying to only look at the positives, but really in the back of my head I've been so scared - bone scared.
Scared, sad and angry.
Step Back
But just a little...
They decided to put Greyson back on the cannula for a little while. But with very little flow. I know that it is a good move because he was having some spells and drifting low, but I'm still sad that we have to take this little step back.
They decided to put Greyson back on the cannula for a little while. But with very little flow. I know that it is a good move because he was having some spells and drifting low, but I'm still sad that we have to take this little step back.
An Optomistic Day
Yesterday when I arrived at the hospital Greyson was breathing on his own! No nasal cannula, no nothing! Yep, my baby was breathing on his own!
Now everyone is saying this might not last this time and he'll have to go back to a cannula for a little while. But at least for awhile he was being a rock star baby. I'm just hoping that he keeps it up! We will see when I get up there today.
Until then, enjoy this video of our Greyson without any breathing assistance!
Sorry for my ridiculous commentary. To make up for it, check out these pictures.
"Hey, what's going on?"
"No, no more photos!"
Now everyone is saying this might not last this time and he'll have to go back to a cannula for a little while. But at least for awhile he was being a rock star baby. I'm just hoping that he keeps it up! We will see when I get up there today.
Until then, enjoy this video of our Greyson without any breathing assistance!
Sorry for my ridiculous commentary. To make up for it, check out these pictures.
"Hey, what's going on?"
"No, no more photos!"Monday, December 22, 2008
Cute, Cute Outfit!
IMG_0724
Originally uploaded by M Perry Family
I love the little horse feet on this sleeper. I also love how Greyson fell asleep with this legs straight out. Take that fetal position!
Sunday, December 21, 2008
He's Out!
Of the isolette and is in an open crib! That is one of the milestones he has to reach in order to come home! Whoo Hoo!
Now, he just needs to master breathing all the time and orally feeding!
The best part about him being in an open crib is that now when I visit I can just pick him up whenever I want to! It is so amazing to be able to snuggle Greyson and not just look at him through the Plexiglas. This is such a big step for the little man, and it gets him that much closer to coming home! I want him to be home so badly!
Cozy in the same style crib as the "well babies"!
This hat is a little big for me...but man, I'm cute!
This is a yawn, not a scream!
Well hello, I'm awake for a change! Love me up!
Now, he just needs to master breathing all the time and orally feeding!
The best part about him being in an open crib is that now when I visit I can just pick him up whenever I want to! It is so amazing to be able to snuggle Greyson and not just look at him through the Plexiglas. This is such a big step for the little man, and it gets him that much closer to coming home! I want him to be home so badly!
Cozy in the same style crib as the "well babies"!
This hat is a little big for me...but man, I'm cute!
This is a yawn, not a scream!
Well hello, I'm awake for a change! Love me up!Saturday, December 20, 2008
Greyson Video #4
Michael and I headed up to the hospital tonight to hang out with Greyson. Man, we love this baby! He had some fierce hiccups when Michael was holding him.
Darn Those Hiccups!
After Michael held him turning his feeding I took a turn holding him. Greyson settled in and fell asleep. Eating is tough for Greyson, he tends to destat during meals so once it was over he was pooped - but much to our surprise he did not actually poop! Instead he was passing the most wretched toots*. Really, really, stinking toots! We thought that surly he had pooped - the stink was lingering! Nope, just some stinky toots. He also had some major burps. Maybe he is just a really, really gassy baby and that is part of his trouble.
Hey, Little Man! Those hands, just make me giggle.
Proud Papa, checking out his awesome son.
Taking a post dinner nap on Mama.
*Sorry for talking about your smelly toots, Greyson!
Darn Those Hiccups!
After Michael held him turning his feeding I took a turn holding him. Greyson settled in and fell asleep. Eating is tough for Greyson, he tends to destat during meals so once it was over he was pooped - but much to our surprise he did not actually poop! Instead he was passing the most wretched toots*. Really, really, stinking toots! We thought that surly he had pooped - the stink was lingering! Nope, just some stinky toots. He also had some major burps. Maybe he is just a really, really gassy baby and that is part of his trouble.
Hey, Little Man! Those hands, just make me giggle.
Proud Papa, checking out his awesome son.
Taking a post dinner nap on Mama.*Sorry for talking about your smelly toots, Greyson!
Friday, December 19, 2008
Acid Reflux?
I'm starting to think that Greyson's problems involve some serious acid reflux. His stats dropped and he got really fussy and then he let out a huge burp and seemed much better. They are putting the High Flow Nasal Cannula on him right now and I decided to stop out of the room - it gets really crowded.
If this HFNC doesn't help they may start him on some meds for reflux. I just want something to work.
UPDATE: Well, they put the HFNC on and while the Respiratory Therapist said that Greyson fussed the whole time he was doing much better when I left. I hope he keeps it up!
If this HFNC doesn't help they may start him on some meds for reflux. I just want something to work.
UPDATE: Well, they put the HFNC on and while the Respiratory Therapist said that Greyson fussed the whole time he was doing much better when I left. I hope he keeps it up!
Trying to Curb The Apnea
Greyson just won't kick these apnea issues. They've maxed him out on caffeine and it never did anything. His extended feedings don't seem to be doing much either. The good news is that his heart rate doesn't drop very often but his oxygen levels sure do (the bad). So today they are switching him to the high-flow nasal cannula. I think it will look the same as the regular cannula, but it will give him more flow and the air will be more humidified (something I could use as the hospital is SO dry).
This is one of those one step back days... We just have to get this figured out!
We'd appreciate any prayers/positive vibes that we can fix this apnea issue quickly and that our little Greyson will master breathing soon.
This is one of those one step back days... We just have to get this figured out!
We'd appreciate any prayers/positive vibes that we can fix this apnea issue quickly and that our little Greyson will master breathing soon.
Greyson Video #3
Greyson had just finished kicking free of all his blankets and was getting comfy. It's nice to see him in clothes even if everything is huge on him.
Thursday, December 18, 2008
Crazy man
Greyson is super fussy today. He has decided that he doesn't like being wrapped up and would rather kick his legs out and spread his arms. This is what he was like in the womb so this is really the Greyson I know. The past few days he's been all wrapped up and calm, which was just weird. My little man is a kicker!
Apnea, Eating and RSV
Everyone is still trying to figure out this apnea thing with Greyson. The caffeine hasn't had much effect and neither has extending his feedings from 30 min. to 1 hour, or elevating his the head of his bed. So yesterday they tried reducing the flow of oxygen in his nasal cannula thinking that perhaps he is getting too much oxygen too easily and then forgetting to breath at other points. So his flow has been cut by half. I'm hoping he'll show sign of improvement soon. At this time it is his biggest hurdle.
Greyson will be getting his RSV vaccine tomorrow. Having a preemie baby in the middle of winter means he will be especially susceptible to RSV and his little lungs really don't need that. He will be getting a shot every month until winter is over and then start again in the fall. Poor little guy, that is a lots of pokes.
His feeding tube has also been moved from his mouth to his nose. He seems more comfortable this way and is taking a pacifier more easily. It doesn't actually "pacify" him, but it helps to teach him how to suck - a still he will need to master before coming home. Yesterday while up in the NICU I was thinking about how little crying you hear. I've only head Greyson cry once and it was very short lived and fairly wimpy. I wonder if that will keep up when he comes home?
Greyson with his nasal feeding tube. All bundled up and taking a nap.
(Bonus with the new tube - he doesn't try to pull it out as often!)
Greyson will be getting his RSV vaccine tomorrow. Having a preemie baby in the middle of winter means he will be especially susceptible to RSV and his little lungs really don't need that. He will be getting a shot every month until winter is over and then start again in the fall. Poor little guy, that is a lots of pokes.
His feeding tube has also been moved from his mouth to his nose. He seems more comfortable this way and is taking a pacifier more easily. It doesn't actually "pacify" him, but it helps to teach him how to suck - a still he will need to master before coming home. Yesterday while up in the NICU I was thinking about how little crying you hear. I've only head Greyson cry once and it was very short lived and fairly wimpy. I wonder if that will keep up when he comes home?
Greyson with his nasal feeding tube. All bundled up and taking a nap.(Bonus with the new tube - he doesn't try to pull it out as often!)
Wednesday, December 17, 2008
An Apnea Update
Greyson is still having apnea episodes but they seem to be mainly tied with his feedings. So instead of 30ml given to him over 30min he will be getting 33ml over 1 hour. He will still be doing this every 3 hours. They have also elevated the head of his bed even more, in hopes that it reduces the acid reflux issues. They started this last night and while it is helping he is still having them.
I know that he just needs time to grow out of this phase and that his body is still so small that destating is to be expected, but I really don't want it to happen to my wonderful little boy. I am so looking forward to heading up to the NICU later this morning so I can hold him through a feeding and just spend time with him.
One upside is that Greyson is champ about coming out of the destats. Often he comes out on his own and the rest of the time he just needs to be repositioned a little bit. Since he spends so much time on his tummy (in the featal position - which I can tell you he NEVER stayed in when he WAS a fetus) he has already developed really strong neck muscles and tends to get himself in wonky positions. He's moved his head several times while I've been holding him and it always amazes me... and freaks me out a little bit. It is usually after these movements that he destats because his ariways aren't as clear. I've learned to move him back and keep his chin from getting tucked, but I'm still a little nervous about moving him around too much. He is just so little and so sweet.
I know that he just needs time to grow out of this phase and that his body is still so small that destating is to be expected, but I really don't want it to happen to my wonderful little boy. I am so looking forward to heading up to the NICU later this morning so I can hold him through a feeding and just spend time with him.
One upside is that Greyson is champ about coming out of the destats. Often he comes out on his own and the rest of the time he just needs to be repositioned a little bit. Since he spends so much time on his tummy (in the featal position - which I can tell you he NEVER stayed in when he WAS a fetus) he has already developed really strong neck muscles and tends to get himself in wonky positions. He's moved his head several times while I've been holding him and it always amazes me... and freaks me out a little bit. It is usually after these movements that he destats because his ariways aren't as clear. I've learned to move him back and keep his chin from getting tucked, but I'm still a little nervous about moving him around too much. He is just so little and so sweet.
Tuesday, December 16, 2008
Supply
Since Greyson is still eating through a tube I have been exclusively pumping. Every two to three hours I'm at it again. It is not one of may favorite things, but it is something that I can do for my little man. So I'll be pumping as long as it takes.
As part of my cleaning today I organized my "supply" in the deep freeze I have 1 gallon freezer bags with 80ml bottles (provided by the NICU) of milk from 12/11, 12/12, 12/13, 12/14 and 12/15. I usually produce 120ml per pumping and since Greyson is only getting feeds of 30ml* we have quite the stockpile. Plus the the NICU has a freezer bin full too!
All the bottles were taking over our kitchen freezer - now the plan is to just keep the current day upstairs and move the rest in the deep freeze. I can't wait until Greyson can kick the tube and start bottle/breastfeeding.
*Greyson and I are on a similar schedule. He eats every 3 hours and I try to pump that often too. Currently I'm staying way ahead of him, but I'm worried my supply will go down and his feedings will increase.
As part of my cleaning today I organized my "supply" in the deep freeze I have 1 gallon freezer bags with 80ml bottles (provided by the NICU) of milk from 12/11, 12/12, 12/13, 12/14 and 12/15. I usually produce 120ml per pumping and since Greyson is only getting feeds of 30ml* we have quite the stockpile. Plus the the NICU has a freezer bin full too!
All the bottles were taking over our kitchen freezer - now the plan is to just keep the current day upstairs and move the rest in the deep freeze. I can't wait until Greyson can kick the tube and start bottle/breastfeeding.
*Greyson and I are on a similar schedule. He eats every 3 hours and I try to pump that often too. Currently I'm staying way ahead of him, but I'm worried my supply will go down and his feedings will increase.
Preparing for Chirstmas
When I was still in the hospital Michael put up this Christmas tree and decorated a little bit. Thank goodness because I just don't have it in me this year to decorate. But something was missing - a stocking for Greyson! So yesterday I went out and bought new stockings for our growing family. So now we all have matching mini-stockings. Michael is the Snow Man, I'm the Reindeer and Greyson, of course is the Little Bird!
I also picked one more up for Greyson's room in the NICU (it's a penguin). And speaking of the NICU I also brought our holiday board books up there, so we can read to him about Christmas.
I also thought you might want a peek at the isolette. We have it covered with the blanket from his room at home to help keep out the noise and the light.
Preemies like it dark and quite - more womb like. The NICU is working on weening the temp in the isolette so soon he will be able to be in an open crib. That is one of the milestones he needs to master before he can go home! I had a secret hope that he would be home for Christmas, but I think early to mid January is more likely. That just means that next year we will celebrate even more!
I also picked one more up for Greyson's room in the NICU (it's a penguin). And speaking of the NICU I also brought our holiday board books up there, so we can read to him about Christmas.
I also thought you might want a peek at the isolette. We have it covered with the blanket from his room at home to help keep out the noise and the light.
Preemies like it dark and quite - more womb like. The NICU is working on weening the temp in the isolette so soon he will be able to be in an open crib. That is one of the milestones he needs to master before he can go home! I had a secret hope that he would be home for Christmas, but I think early to mid January is more likely. That just means that next year we will celebrate even more!
Feeling Guilty
Last night it snowed and the roads still aren't plowed. And since yesterday was the first time after my c-section that I've driven I've decided to stay home today. This will be the first day I haven't gone up to spend time with Greyson.
So to pass the time I'll be sewing name tags on the tiniest clothes in this drawers so I can take them up to the NICU and then we can get them back when he comes home. And finish putting the nursery together.
I really hope the weather gets better so I can get up there!
So to pass the time I'll be sewing name tags on the tiniest clothes in this drawers so I can take them up to the NICU and then we can get them back when he comes home. And finish putting the nursery together.
I really hope the weather gets better so I can get up there!
Until I can get up there I'll just look at the photos of our family!
Monday, December 15, 2008
Having a Better Day
Greyson is having a better day therefore so am I. Last night was a very weepy one for me. But I think that this will be a better night. Greyson is in a new room and I like it better. It's in a much quieter area and I think the room is a little bigger - even if it isn't bigger it has a better set-up. I think that we will all do much better there.
It is amazing how much Greyson having a good day changes the atmosphere at the house. Yesterday both Michael and I were on the verge of tears all night and were so frazzled. Tonight we are happy and laughing. Greyson, you completely rule our lives and I wouldn't have it any other way.
It is amazing how much Greyson having a good day changes the atmosphere at the house. Yesterday both Michael and I were on the verge of tears all night and were so frazzled. Tonight we are happy and laughing. Greyson, you completely rule our lives and I wouldn't have it any other way.
Sunday, December 14, 2008
Spells
Here in the NICU they call Apnea episodes "Spells". I think it is their way of trying to play down the seriousness of this issue for the frightened parents. I am one of those frightened parents.
Greyson's room is right across from the main door in the NICU which means that I can peek in at him prior to scrubbing in. Today when I peeked in they were getting ready to draw labs and told me to wait in the parents room (which is where I am now). They said he is having more spells so they are going to draw labs to see what is going on. They started him on Caffeine yesterday (the common treatment for "spells") but it doesn't seem to be working yet and he is having more of them.
I hate these spells. They freak me out so much. Just the thought of my little man not breathing hurts my heart.
UPDATE: Tonight while I was holding him he had another big "spell". He was sleeping in my arms and then I noticed his lips looked bluish. I asked Michael "what are his stats?" just as all the alarms went off. His oxygen saturation levels has dropped from the mid 90's to 50's in just a few seconds. Then he hung out in the 70's for what seemed like forever. It is just so hard. He came back and after they gave him some more caffeine he seemed to do better, but he still kept having drops. I hated to leave tonight, but at that same time I was having trouble holding it together. I was crying a little bit but holding back a tidal wave of tears. Plus I was so exhausted I didn't know what to do.
Even though I know that Greyson is doing really well considering he should still be safly tucked in my womb for another 2 months, I am still scared every minute of every day. Michael was saying how he was more afraid when I was in the hospital and we didn't really know what was going to happen next. But I am way more afraid now. Then I could feel him move around - I could rub my belly and feel him kick. He was with me 24hours a day and I could keep him safe. But know it is in someone elses hands and while the doctors and nurses are the wonderful, it is not the same.
Greyson's room is right across from the main door in the NICU which means that I can peek in at him prior to scrubbing in. Today when I peeked in they were getting ready to draw labs and told me to wait in the parents room (which is where I am now). They said he is having more spells so they are going to draw labs to see what is going on. They started him on Caffeine yesterday (the common treatment for "spells") but it doesn't seem to be working yet and he is having more of them.
I hate these spells. They freak me out so much. Just the thought of my little man not breathing hurts my heart.
UPDATE: Tonight while I was holding him he had another big "spell". He was sleeping in my arms and then I noticed his lips looked bluish. I asked Michael "what are his stats?" just as all the alarms went off. His oxygen saturation levels has dropped from the mid 90's to 50's in just a few seconds. Then he hung out in the 70's for what seemed like forever. It is just so hard. He came back and after they gave him some more caffeine he seemed to do better, but he still kept having drops. I hated to leave tonight, but at that same time I was having trouble holding it together. I was crying a little bit but holding back a tidal wave of tears. Plus I was so exhausted I didn't know what to do.
Even though I know that Greyson is doing really well considering he should still be safly tucked in my womb for another 2 months, I am still scared every minute of every day. Michael was saying how he was more afraid when I was in the hospital and we didn't really know what was going to happen next. But I am way more afraid now. Then I could feel him move around - I could rub my belly and feel him kick. He was with me 24hours a day and I could keep him safe. But know it is in someone elses hands and while the doctors and nurses are the wonderful, it is not the same.
Saturday, December 13, 2008
Daddy's Turn
Michael got to hold Greyson today. They were so sweet and Greyson looked so content. I'm very happy that Michael finally got the chance. They normally only let us hold at meal times and it seemed like Greyson's meal times never corresponded with Michael being up there. I'm so glad it worked out today.
Dad and Greyson saying hello.
They have us do skin to skin holding to help keep Greyson warm when out of the isolette.Friday, December 12, 2008
Under the Weather
I'm feeling a little under the weather today so I'm staying home. It makes me sad not to see Greyson today, but I don't want to risk getting him sick. He's doing so well right now I don't want to set him back. So I've been sleeping, pumping and watching the videos of him all day. I miss my little guy but I know this is what is the best for him.
I'm hoping that I'll feel better tomorrow so I can spend some time quality time with him. I miss my little man.
UPDATE: I have a sinus infection that has settle in my ears. This is what normally happens when I'm run down. This time I ignored the symptoms for awhile (read over 2 weeks) until I just couldn't do it any more. The rocking has gotten worse and on Monday, if I'm not feeling much better I'm going to the doctor.
I'm hoping that I'll feel better tomorrow so I can spend some time quality time with him. I miss my little man.
UPDATE: I have a sinus infection that has settle in my ears. This is what normally happens when I'm run down. This time I ignored the symptoms for awhile (read over 2 weeks) until I just couldn't do it any more. The rocking has gotten worse and on Monday, if I'm not feeling much better I'm going to the doctor.
Thursday, December 11, 2008
Our Baby is a Rock Star!
Greyson is doing great on the cannula. I think he is very happy not to have a tube down his throat or a giant mask strapped to his face. So the little cannula is a breeze. He had his eyes open and was looking all around. Plus they have him in his "Dork, just like Daddy" onesie that Tricia made him. It's a little huge on him, but so cute! Tonight we are doing some laundry and hopefully some of the littlest clothes we have for him will fit better.
I'm so glad that he is doing so well. In fact, they are weaning the oxygen level down a little every 3 hours. My mind is blown! Once he figures out this breathing thing we will move on to sucking and feeding. Once he can eat well on his own then we can really think about him going home...
Greyson is AWESOME!
Holding my little man.
Look at how wide-eyed he is!
He is resting mush easier on the cannula.
I'm so glad that he is doing so well. In fact, they are weaning the oxygen level down a little every 3 hours. My mind is blown! Once he figures out this breathing thing we will move on to sucking and feeding. Once he can eat well on his own then we can really think about him going home...
Greyson is AWESOME!
Holding my little man.
Look at how wide-eyed he is!
He is resting mush easier on the cannula.
He had a good night
Last night he was doing so well that they decided to give Greyson a try with the nasal cannula. When I called up this morning they said he was doing really well with it! YEAH! They also said that he's been holding his temperature well so we can start putting him clothes and they will turn down the temp in the isolette!
It was such great news to hear. But I have to keep reminding myself what all the NICU staff keep telling us. The NICU is a roller coaster. Today we are up, tomorrow we may be back down - but that is the way it goes. I keep hoping for all ups!
I can't wait to get up there and see him!
It was such great news to hear. But I have to keep reminding myself what all the NICU staff keep telling us. The NICU is a roller coaster. Today we are up, tomorrow we may be back down - but that is the way it goes. I keep hoping for all ups!
I can't wait to get up there and see him!
Wednesday, December 10, 2008
The NICU Rollercoaster
Having a baby in the NICU is the most stressful thing I've ever experienced. The ups and downs, the bleeping and bleating, the levels rising and falling. There is no such thing as constancy.
Preterm babies don't breathe regularly and they often have "spells" or apnea episodes. Greyson had a couple last night. He really hasn't had many, but the fact that he has had any freaks me out. I just want my little baby to breathe.
He has also had trouble keeping his blood gas levels where they want them. His CO2 levels are higher then they like to see. So he may be on the CPAP for awhile longer. We were hoping to get him off of that and on to the high-flow nasal cannula by today. I'm still hoping that by the end of the week they will move him off the CPAP. But whatever it takes to keep my baby breathing.
He is also having some residual food in his stomach after a feeding. He is getting 30ml every 3 hours and they only want 10% residuals. Yesterday he was having residuals of 14, 12 and 8. But then he had a big BM and his residuals dropped to 4 and then 3. So we think he was just "backed up". I'm glad it was an easy fix and that he took care of things on this own, but I hate worrying about all of this.
Having a baby in the NICU is stressful and can make a girl crazy.
Preterm babies don't breathe regularly and they often have "spells" or apnea episodes. Greyson had a couple last night. He really hasn't had many, but the fact that he has had any freaks me out. I just want my little baby to breathe.
He has also had trouble keeping his blood gas levels where they want them. His CO2 levels are higher then they like to see. So he may be on the CPAP for awhile longer. We were hoping to get him off of that and on to the high-flow nasal cannula by today. I'm still hoping that by the end of the week they will move him off the CPAP. But whatever it takes to keep my baby breathing.
He is also having some residual food in his stomach after a feeding. He is getting 30ml every 3 hours and they only want 10% residuals. Yesterday he was having residuals of 14, 12 and 8. But then he had a big BM and his residuals dropped to 4 and then 3. So we think he was just "backed up". I'm glad it was an easy fix and that he took care of things on this own, but I hate worrying about all of this.
Having a baby in the NICU is stressful and can make a girl crazy.
The Day After
So the morning after Greyson was born I was determined to go up and see him as soon as possible. Unfortunately I was recovering from major surgery and hadn't slept in 24+ hours. You are supposed to stay in bed for the first 12 hours, but at 6 hours I was begging the nurses to get me up and out of bed. I couldn't last that long without seeing and touching my baby. So as soon as they would let me I was sitting up on the edge of my bed - then I practically demanded they get me into a wheelchair and up to the NICU.
I was up there by 1:00pm. It was so nice to see him. He was so tiny and sweet. I touched his little feet and hands and just couldn't believe we had made this amazing little person. Even though he was so early, he looked great to me.
They didn't let me stay up with him very long, but it was great. I made several trips up to the NICU throughout the day. By the end of the day I was walking around - way before I should have. I really paid for it the next morning. I was so sore and exhausted that I couldn't make it up to see him until that afternoon. I'm learning how to pace myself.
I was up there by 1:00pm. It was so nice to see him. He was so tiny and sweet. I touched his little feet and hands and just couldn't believe we had made this amazing little person. Even though he was so early, he looked great to me.
They didn't let me stay up with him very long, but it was great. I made several trips up to the NICU throughout the day. By the end of the day I was walking around - way before I should have. I really paid for it the next morning. I was so sore and exhausted that I couldn't make it up to see him until that afternoon. I'm learning how to pace myself.
Monday, December 8, 2008
Weigh In
Greyson is back up to his birth weight! Wow! That happened a lot faster than I thought it would. They are also planning to take out his CPAP and put him on a nasal cannula (the oxygen tube under the nose that most people get when they are in the hospital) within the week! Greyson is doing so well.
Today I was able to hold him for almost 2 hours. Unfortunately he pulled out his feeding tube. He's taken to lifting his own head up and moving it around and pulled out the tube in the process. He didn't seem to mind, but it freaked me out. They put it back in and everything is fine.
UPDATE: This evening he is up a half ounce! What a growing boy!
Today I was able to hold him for almost 2 hours. Unfortunately he pulled out his feeding tube. He's taken to lifting his own head up and moving it around and pulled out the tube in the process. He didn't seem to mind, but it freaked me out. They put it back in and everything is fine.
UPDATE: This evening he is up a half ounce! What a growing boy!
Greyson Videos #1
Greyson and his Crazy Legs!
Greyson with the hiccups and getting his temperature taken by mom.
Sunday, December 7, 2008
Greyson's Birth Story
Very early Thursday morning (November 20th), I went into the hospital with Placenta Previa. It was a scary night involving my first ambulance ride and lots of blood. I spent 3 days on Magnesium Sulfate to stop any contractions and keep Greyson put.
Then the plan was that if I didn't have any more contractions or bleeding I could go home that Tuesday (Nov. 25th) which was also our anniversary. But as fate would have it I started bleeding again on Monday night (Nov. 24th), so I spent our anniversary and Thanksgiving in the hospital.
Then the plan was that I could go home on the next Monday (Dec. 1st) if I didn't bleed. Well, Saturday (Nov. 29th) I started bleeding again. At that point I had bled three times which meant that going home was no longer an option until the little guy was born. We settled in, planned to spend the next 6 to 8 weeks in the hospital. And once again things didn't work out as we had planned.
Monday night (Dec. 1st) after dinner Michael and I were watching TV when I started bleeding again, and it wasn't stopping. Then I started having contractions and bleeding more. The nurse told us that we may have to have a c-section soon. I just didn't believe it! We were just 3 days away from 30 weeks, I wanted to hold off at least until then. Then I started having more frequent contractions. They hooked me up to Magnesium Sulfate, which stopped the contractions when I first arrived at the hospital but this time they didn't do anything. At 10:30pm it was decided that I had to have a c-section right then. So they started prepping me for surgery before I could even get my head around everything. Before I knew it I was being wheeled over the the c-section room and was getting a spinal. Part of why I was planning a natural childbirth (which clearly didn't work out) was because I was so afraid of getting a spinal. It was surprisingly easy and didn't hurt much at all, the bad part was that it made me immediately nauseous. I threw up and was unable to lie down immediately, which caused the meds to settle in my legs - not my abdomen. So I was still able to feel everything in the area where the c-section is preformed so they had to put me all the way out. When they decided to put me out, Michael had to leave the room. So neither of us saw the birth of our baby. Which, more than anything else makes me sad.
Greyson Alden Perry was born at 11:57am on December 1st, 2008. He was only 29 weeks gestation and amazingly enough he weighed in at 3lbs 4oz. Michael followed him up to the NICU where they intibated him becuase eventhough I had recieved the steroid shots to give his lung development a boost, they were still very under developed.
Michael came back down to me when I was waking up. I remember seeing his face as I came to. It was so comforting to see him there, but I wanted to see my baby. They wheeled me up to the NICU and I was able to glance at him, but since I was still on a gurney and he was in the baby warmer with lots of equipment and nurses all I got was a passing glance at my beautiful baby boy. I couldn't sleep at all that night, all I wanted was to touch my baby. It just didn't seem real that he was born. One of the nurses had taken photos of him right after the delivery and I stayed up looking at them over and over again until the batteries ran out on the camera. I just missed my baby so much. I kept running my hands over my abdomen, missing his kicks and headbutts. It's a strange thing to have child without being awake for the birth or seeing him right away. I didn't get to see him until 1:00pm the next day. But that is another story.
Greyson Alden Perry, I love you so much.
Then the plan was that if I didn't have any more contractions or bleeding I could go home that Tuesday (Nov. 25th) which was also our anniversary. But as fate would have it I started bleeding again on Monday night (Nov. 24th), so I spent our anniversary and Thanksgiving in the hospital.
Then the plan was that I could go home on the next Monday (Dec. 1st) if I didn't bleed. Well, Saturday (Nov. 29th) I started bleeding again. At that point I had bled three times which meant that going home was no longer an option until the little guy was born. We settled in, planned to spend the next 6 to 8 weeks in the hospital. And once again things didn't work out as we had planned.
Monday night (Dec. 1st) after dinner Michael and I were watching TV when I started bleeding again, and it wasn't stopping. Then I started having contractions and bleeding more. The nurse told us that we may have to have a c-section soon. I just didn't believe it! We were just 3 days away from 30 weeks, I wanted to hold off at least until then. Then I started having more frequent contractions. They hooked me up to Magnesium Sulfate, which stopped the contractions when I first arrived at the hospital but this time they didn't do anything. At 10:30pm it was decided that I had to have a c-section right then. So they started prepping me for surgery before I could even get my head around everything. Before I knew it I was being wheeled over the the c-section room and was getting a spinal. Part of why I was planning a natural childbirth (which clearly didn't work out) was because I was so afraid of getting a spinal. It was surprisingly easy and didn't hurt much at all, the bad part was that it made me immediately nauseous. I threw up and was unable to lie down immediately, which caused the meds to settle in my legs - not my abdomen. So I was still able to feel everything in the area where the c-section is preformed so they had to put me all the way out. When they decided to put me out, Michael had to leave the room. So neither of us saw the birth of our baby. Which, more than anything else makes me sad.
Greyson Alden Perry was born at 11:57am on December 1st, 2008. He was only 29 weeks gestation and amazingly enough he weighed in at 3lbs 4oz. Michael followed him up to the NICU where they intibated him becuase eventhough I had recieved the steroid shots to give his lung development a boost, they were still very under developed.
Michael came back down to me when I was waking up. I remember seeing his face as I came to. It was so comforting to see him there, but I wanted to see my baby. They wheeled me up to the NICU and I was able to glance at him, but since I was still on a gurney and he was in the baby warmer with lots of equipment and nurses all I got was a passing glance at my beautiful baby boy. I couldn't sleep at all that night, all I wanted was to touch my baby. It just didn't seem real that he was born. One of the nurses had taken photos of him right after the delivery and I stayed up looking at them over and over again until the batteries ran out on the camera. I just missed my baby so much. I kept running my hands over my abdomen, missing his kicks and headbutts. It's a strange thing to have child without being awake for the birth or seeing him right away. I didn't get to see him until 1:00pm the next day. But that is another story.
Greyson Alden Perry, I love you so much.
Friday, December 5, 2008
The Perry Family
IMG_1224
Originally uploaded by M Perry Family
All three of us. I still can't believe that Michael and I made this adorable little boy.
Holding Greyson
After 70 hours Greyson was finally stable enough to be placed in my arms. It was the best feeling in the world. I am still amazed that I can love someone this much.
He really opened his eyes for the first time when he was in my arms. I can't even begin to explain how wonderful it was. My normally fussy baby was cal and happy and breathing easy when we were together. I think we both knew that this is where he belongs.
Thursday, December 4, 2008
He's Here!
Greyson Alden Perry has arrived.
It was quite the night, I'll write all about it soon. But right now I'm a little out of it - and all I want to do is sit next to him.
It was quite the night, I'll write all about it soon. But right now I'm a little out of it - and all I want to do is sit next to him.
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