Some days I feel like I'm pretty good at this parent gig. I can get through my day, get meals on the table, keep Greyson happy and occupied and get 3 to 6 hours of jobby-job work in.
Then there are days where I call Michael at 5:45 leaving him messages like "You better be close to the house, because I can't take much more of this!".
Today fell into the later category. Greyson missed his morning nap and was an over-tired crank, even after his afternoon nap. Yes, he still takes 2 naps - after 16 months of him being a horrible napper he's finally napping twice a day for at least an hour each and I'm happily rolling with it.
Greyson has entered the terrible two's a little early. He's currently into throwing things, be it Cheerios or tantrums. He's mastered the art of going limp so I can't pick him up easily. He's testing me all the time. I say "don't touch the lamp" he looks at me and touches the lamp. We go to time out and then he goes right back to the lamp and touches a different part of it while watching me - we go back to time out. Over and over again!
I know this is just part of being the mom of a very strong-willed 18 month old, but some days it just gets the best of me.
And when it does, I pour myself a Cherry Coke, toss in a scoop of ice cream and a dash of vodka and thank the good lord that Michael finally came home from work.
Showing posts with label Downs. Show all posts
Showing posts with label Downs. Show all posts
Thursday, June 10, 2010
Friday, January 15, 2010
First Fat Lip!
Well this isn't a good first, but it is what it is. Greyson was trying to walk from the ottoman to the couch and he didn't make it. He fell flat on his face and now has a fat lip. Poor little guy!
Tuesday, March 31, 2009
Madness
Last night was a night out a sitcom of frazzled mew parents. I had a very sore throat and was relatively out of commission and Michael was working on a project - it was going to be a very low-key evening. Then Greyson, who had been an angel all day, decided that he needed to work his lungs and scream. Uncontrollably scream for hours. Nothing worked. Not bottles, not pacifiers, not rocking, not strolling, not changing his diaper, the gripe water only worked as he was taking it but then he started screaming again. About midnight Michael finally loaded him into the car and drove him around the block until the screaming stopped and the little man fell asleep. He slept for a little while and then the screaming resumed. I took over around 3:45 and had limited success by "boobing" him. I don't really nurse him, but apparently I am a human pacifier. It was madness. Madness I tell you!
Today is going much better. Greyson is well behaved and is resting on my chest right now. It's moments like these that gets me through moments like last night. Greyson is so sweet and wonderful, and I'm just so happy that he is my little man.
He just better not scream all night tonight too!
Today is going much better. Greyson is well behaved and is resting on my chest right now. It's moments like these that gets me through moments like last night. Greyson is so sweet and wonderful, and I'm just so happy that he is my little man.
He just better not scream all night tonight too!
Thursday, March 12, 2009
Pulling an All Nighter
I'm up with Greyson - it's ten till 5. We've been up since 2...after going to bed at 11:30.
Greyson is really congested right now. He's got a stuffy nose and just can't lay down without having trouble breathing. Tonight we have sat in a steamy shower, rocked, walked, cried, booger sucked and just held on. He is just so full of snot and his nose is so stuffy. Nothing is really helping but he's finally asleep in my arms but I've decided to just stay up for the next hour until Greyson needs to eat again.
I wish I could help him more, but with my genetics I think this is just the beginning.
Greyson is really congested right now. He's got a stuffy nose and just can't lay down without having trouble breathing. Tonight we have sat in a steamy shower, rocked, walked, cried, booger sucked and just held on. He is just so full of snot and his nose is so stuffy. Nothing is really helping but he's finally asleep in my arms but I've decided to just stay up for the next hour until Greyson needs to eat again.
I wish I could help him more, but with my genetics I think this is just the beginning.
Monday, January 12, 2009
It's the NICU shuffle
How does it go again? Oh yeah, two steps forward, one step back.
We just stepped back.
Greyson had some HUGE destats this morning. They don't tell you these thigns in the NICU. They sugar coat - I found this out by reading his chart. And good thing I did because 45 min later the doctor came in and told me he wants to put Greyson back on the nasal cannula. I was floored. He's been off of it for awhile now and when he is not destating he keeps his stats at a happy 99 or 100. But since he dropped so low this morning (in the 20's) and needed serious help to get back (the CPAP - the huge one that forces oxygen into his lungs) it's clear that something needed to happen and really I support any measure that helps Greyson.
That doesn't change the fact that I don't like it. After the doc left I just sat there holding my sweet sleeping boy and cried. When Paxton the respiratory guy came in to fit the cannula I had to leave. It just made me so sad. I got to see his whole face for less than 24 hours and now he has the cannula again and this sets us back on his coming home. sigh.
You'd think I'd get used to the ups and downs of the NICU, but no. The downs are always a shock.
We just stepped back.
Greyson had some HUGE destats this morning. They don't tell you these thigns in the NICU. They sugar coat - I found this out by reading his chart. And good thing I did because 45 min later the doctor came in and told me he wants to put Greyson back on the nasal cannula. I was floored. He's been off of it for awhile now and when he is not destating he keeps his stats at a happy 99 or 100. But since he dropped so low this morning (in the 20's) and needed serious help to get back (the CPAP - the huge one that forces oxygen into his lungs) it's clear that something needed to happen and really I support any measure that helps Greyson.
That doesn't change the fact that I don't like it. After the doc left I just sat there holding my sweet sleeping boy and cried. When Paxton the respiratory guy came in to fit the cannula I had to leave. It just made me so sad. I got to see his whole face for less than 24 hours and now he has the cannula again and this sets us back on his coming home. sigh.
You'd think I'd get used to the ups and downs of the NICU, but no. The downs are always a shock.
Friday, January 2, 2009
Not himself today
Greyson hasn't been himself for the past few days. Yesterday was really rocky with lots of destats, some of which were really deep. Today wasn't as bed, but he still wasn't acting like himself. I sat with him for several hours and he only fluttered open his eyes a few times - the rest of the time he fitfully slept. He clearly looked uncomfortable. He also wouldn't nurse. He wouldn't even open his mouth. I spoke to the doctor about this and she decided to run some blood work to see if he is coming down with something.
They took a chest x-ray yesterday and it was clear so we know it is not a respiratory thing (thank goodness). And he is still off the cannula, it's now been over 48 hours so chances are it will stay off! So that is my silver lining.
Just to rule out a cow's milk allergy I'm cutting out all milk from my diet. This is extremely hard because a glass of milk is my snack of choice. Since I spend so much time in the NICU where food or drinks are not allowed except in the parents room I haven't been eating as much as I should. And in the parents room the only provided snacks are crackers that contain soy (out), milk (which was in, but is now out), soda - mainly diet (which is out because drinking anything with artificial sweeteners gives me an immediate headache), and peanut butter! (which is so out that sometimes I don't even go into the room because it smells like PB). So with those kind of options I've been letting way too much time pass between meals. Milk was my back-up, now I'm going to have to find something else. But if finding a new snack will help my baby feel better I'm happy to do it.
He really looked pathetic today and it made me sad that I couldn't make him feel better. Here's hoping we get all this figured out soon so that Greyson can feel better and come home.
They took a chest x-ray yesterday and it was clear so we know it is not a respiratory thing (thank goodness). And he is still off the cannula, it's now been over 48 hours so chances are it will stay off! So that is my silver lining.
Just to rule out a cow's milk allergy I'm cutting out all milk from my diet. This is extremely hard because a glass of milk is my snack of choice. Since I spend so much time in the NICU where food or drinks are not allowed except in the parents room I haven't been eating as much as I should. And in the parents room the only provided snacks are crackers that contain soy (out), milk (which was in, but is now out), soda - mainly diet (which is out because drinking anything with artificial sweeteners gives me an immediate headache), and peanut butter! (which is so out that sometimes I don't even go into the room because it smells like PB). So with those kind of options I've been letting way too much time pass between meals. Milk was my back-up, now I'm going to have to find something else. But if finding a new snack will help my baby feel better I'm happy to do it.
He really looked pathetic today and it made me sad that I couldn't make him feel better. Here's hoping we get all this figured out soon so that Greyson can feel better and come home.
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.
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.
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.
Thursday, December 18, 2008
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!)
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.
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.
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.
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