March 30, 2013:
It's definitely been an eventful past few days for me not so much for RJ. They haven't changed much on the lil guy. They've weight adjusted a few meds, weaned some on his NIPPV, and just today increased his feeds from 34ml to 36mls. He's been growing and as of last night is up to 4lb 3oz!! He's still doing well with his Fio2 between 21-25% mostly. He's just getting cuter and cuter. He's so at peace when being held... :)
Thursday night Robert and I came back to give the lil man a bath. He's not a fan of the body wash, but has gotten used to his head being scrubbed. He was looking at daddy as I was washing his hair and then drying it. We had a good lil session and then had to leave. I needed to get home and prepare for my angiogram on Friday.
We ended up having my test moved up to the first slot. We had to arrive at the hosp at 6:30am for all the prep before the actual test around 8am. We moved the test up so that I was guaranteed anesthesia to help aid me through the procedure. The placement of the 20G IV in my left hand was the worst pain I felt of the whole ordeal. I have to admit that Versed and Propofol are the bestest drugs ever. I don't remember a thing!! The most annoying thing was having to lie flat for 6 hrs after and needing to pee like a racehorse. I needed to pump during this lying flat timeframe. My mom had to help. It was super tricky not to spill milk everythwere. We were successful :) So the dissection is healing. The blood flow from my right internal carotid is practically back to normal again. That's why I'm not hearing the the whooshing sound in my right ear anymore. The bummer is that I do have a pseudoaneurysm. It's stable right now. My doc wants me to get a CTA (CT angiogram) again in two months. He said he usually treats all pseudoaneurysms because he's never seen one disappear. I'm praying that mine decides to shrink and that I won't need any further interventions.
Thanks for all the prayers and support.
Saturday, March 30, 2013
Wednesday, March 27, 2013
March 27, 2013:
It's easier to let time slip away when there aren't many changes to report on the RJ front. He is doing well and remaining close to room air with his Fio2. It's still between 21-25%. The steroids seem to have stunted his growth a lil, which is normal, so we are hoping that he will start growing quicker again. Last night he was up to 3 lb 15oz. He's still been fussy as he comes off the steroids being in his system. He's been taking the binki great for us. We try doing it with each feeding time. I think his lil personality is coming out even more. We gave him a bath when we got back into town Monday night. He didn't like it as usual, but his oxygenation remained great through the whole thing which was very encouraging. I even got to snuggle for about an hour after bath time. That was simply heavenly. I've had a couple good snuggling sessions the past couple days as well. It's super funny how he starts out in the middle of my chest and wiggles his way into the crook of my right arm. He seems to be more comfortable there. I get a real good look at his face that way too. :) He is a squirmer for sure and it's so much fun to watch. We enjoy how wide-eyed he gets at times as well just looking around checking everything out. We really wish we could show him off to more people. The manager came walking around today and we asked her about the flu restriction being lifted. She said the flu is still rampant out in the community, probably due to the crazy weather we are having. She said for now they have to keep the strict restrictions on only parents and grandparents.
It is officially less than 1 month till RJ's official due date. We are anxiously awaiting his discharge from the NICU. It is getting so exhausting and annoying. I wasn't much of a hospital fan even while working as a nurse. I only wanted to be there my designated work days, and then no more hospital for me. Now we are there EVERY single day, unless we are out of town.
I have my angiogram early Friday morning to check on the status of my dissection and see if there needs to be any further intervention. We are praying that the dissection is healing and that Aspirin will suffice as the course of treatment. I have to admit that I'm nervous and anxious about the whole procedure. Thankfully my husband is part of an awesome Anesthesia team, and they are going to make sure I'm taken care of and don't have to feel any pain or remember anything of the procedure. My parents are coming into town, so that will be nice support.
On a happier note we got RJ's crib bedding in this week and just washed it tonight. We put it together and it looks soooo cute!! I can't wait to show him and actually use the room as it should be used. :) After doing a lot of desk work this afternoon, it's time to go pamper my feet and crawl into bed.
Thanks again to everyone for their love, support, and prayers.
It's easier to let time slip away when there aren't many changes to report on the RJ front. He is doing well and remaining close to room air with his Fio2. It's still between 21-25%. The steroids seem to have stunted his growth a lil, which is normal, so we are hoping that he will start growing quicker again. Last night he was up to 3 lb 15oz. He's still been fussy as he comes off the steroids being in his system. He's been taking the binki great for us. We try doing it with each feeding time. I think his lil personality is coming out even more. We gave him a bath when we got back into town Monday night. He didn't like it as usual, but his oxygenation remained great through the whole thing which was very encouraging. I even got to snuggle for about an hour after bath time. That was simply heavenly. I've had a couple good snuggling sessions the past couple days as well. It's super funny how he starts out in the middle of my chest and wiggles his way into the crook of my right arm. He seems to be more comfortable there. I get a real good look at his face that way too. :) He is a squirmer for sure and it's so much fun to watch. We enjoy how wide-eyed he gets at times as well just looking around checking everything out. We really wish we could show him off to more people. The manager came walking around today and we asked her about the flu restriction being lifted. She said the flu is still rampant out in the community, probably due to the crazy weather we are having. She said for now they have to keep the strict restrictions on only parents and grandparents.
It is officially less than 1 month till RJ's official due date. We are anxiously awaiting his discharge from the NICU. It is getting so exhausting and annoying. I wasn't much of a hospital fan even while working as a nurse. I only wanted to be there my designated work days, and then no more hospital for me. Now we are there EVERY single day, unless we are out of town.
I have my angiogram early Friday morning to check on the status of my dissection and see if there needs to be any further intervention. We are praying that the dissection is healing and that Aspirin will suffice as the course of treatment. I have to admit that I'm nervous and anxious about the whole procedure. Thankfully my husband is part of an awesome Anesthesia team, and they are going to make sure I'm taken care of and don't have to feel any pain or remember anything of the procedure. My parents are coming into town, so that will be nice support.
On a happier note we got RJ's crib bedding in this week and just washed it tonight. We put it together and it looks soooo cute!! I can't wait to show him and actually use the room as it should be used. :) After doing a lot of desk work this afternoon, it's time to go pamper my feet and crawl into bed.
Thanks again to everyone for their love, support, and prayers.
Sunday, March 24, 2013
March 24, 2013:
We've been getting good reports the past few times we've called to check on RJ. He had a nice big poop last night, so we were thankful for that. The Beneprotein that they give in his milk to help him grow can be constipating. He is on his last day of steroids I believe, which were given to help his respiratory status and help him stay off the vent. The steroids have caused his blood pressure to elevate some, so they've given him a few doses of Hydralazine to help his blood pressure lower. Hopefully in the next couple days his blood pressure will even out and get back to normal again. His nurse last night is one of our favorites. She gave us a thorough report and said she was working on RJ taking his binki. She said he was doing better last night than Saturday night. Today he has another one of our favorite nurses watching over him. He's still down in the 20's on his Fio2, so we are super excited about that. He's 3 lb 12 oz still. He needs to relax and get comfortable w/ his NIPPV and stop getting agitated so that he can grow. Hopefully we will see some progress in that department this week.
I'm trying to relax, get caught up on sleep, and enjoy being w/ family. It's just hard being away from my lil one. I just want to hold him tight on my chest and have him fall asleep. I know it's important for Robert and I to get out of the hospital and have a different pace, but it's still hard to leave.
We've been getting good reports the past few times we've called to check on RJ. He had a nice big poop last night, so we were thankful for that. The Beneprotein that they give in his milk to help him grow can be constipating. He is on his last day of steroids I believe, which were given to help his respiratory status and help him stay off the vent. The steroids have caused his blood pressure to elevate some, so they've given him a few doses of Hydralazine to help his blood pressure lower. Hopefully in the next couple days his blood pressure will even out and get back to normal again. His nurse last night is one of our favorites. She gave us a thorough report and said she was working on RJ taking his binki. She said he was doing better last night than Saturday night. Today he has another one of our favorite nurses watching over him. He's still down in the 20's on his Fio2, so we are super excited about that. He's 3 lb 12 oz still. He needs to relax and get comfortable w/ his NIPPV and stop getting agitated so that he can grow. Hopefully we will see some progress in that department this week.
I'm trying to relax, get caught up on sleep, and enjoy being w/ family. It's just hard being away from my lil one. I just want to hold him tight on my chest and have him fall asleep. I know it's important for Robert and I to get out of the hospital and have a different pace, but it's still hard to leave.
Saturday, March 23, 2013
March 23, 2013:
I know I haven't been in the mood to blog lately. I've been tired too. By the end of the week I'm exhausted. I'm happy to report that RJ is doing well. They have been able to wean his Fio2 down to between 23-26%. He gets agitated w/ his cares and then usually settles right back down. He has amazing head control, so will turn his head from side to side whenever he wants. It's pretty funny. :) I got to hold him Thursday evening after his night cares and calmed him right down. I could have just fallen asleep there w/ him on my chest. :) We went in Friday morning and I ended up getting to hold RJ for 3.5 hrs. The nurse went to take him back to his isolette and saw how comfortable he was and just couldn't do it. :) I didn't mind putting off needing to pump or go to the bathroom to hold my boy just a lil longer. :) They haven't made much changes over the past couple days. They want RJ to get used to the NIPPV and give him every chance to "fly" this time. They held off on giving his eye exam this week, so he will have it on Monday. It's a pretty big stressor for the lil preemies. They've adjusted some of his meds per his weight, which decreased after his large amounts of poo the other night and not having all the extra tubing from being intubated. He's around 3lb 13oz. They are going to be more cautious with weaning his NIPPV settings. He gets cap gas readings twice a week to make sure his respiratory status is still doing well, plus he gets chest x-rays on those same days. I'm starting to get a lil more excited that he's extubated. I'm just tired of all the set backs, so it's hard to get really excited about this step. He is looking more and more adorable each day. I wish I could just hold him all the time and never let go. :)
Thanks for all your prayers and support!!
I know I haven't been in the mood to blog lately. I've been tired too. By the end of the week I'm exhausted. I'm happy to report that RJ is doing well. They have been able to wean his Fio2 down to between 23-26%. He gets agitated w/ his cares and then usually settles right back down. He has amazing head control, so will turn his head from side to side whenever he wants. It's pretty funny. :) I got to hold him Thursday evening after his night cares and calmed him right down. I could have just fallen asleep there w/ him on my chest. :) We went in Friday morning and I ended up getting to hold RJ for 3.5 hrs. The nurse went to take him back to his isolette and saw how comfortable he was and just couldn't do it. :) I didn't mind putting off needing to pump or go to the bathroom to hold my boy just a lil longer. :) They haven't made much changes over the past couple days. They want RJ to get used to the NIPPV and give him every chance to "fly" this time. They held off on giving his eye exam this week, so he will have it on Monday. It's a pretty big stressor for the lil preemies. They've adjusted some of his meds per his weight, which decreased after his large amounts of poo the other night and not having all the extra tubing from being intubated. He's around 3lb 13oz. They are going to be more cautious with weaning his NIPPV settings. He gets cap gas readings twice a week to make sure his respiratory status is still doing well, plus he gets chest x-rays on those same days. I'm starting to get a lil more excited that he's extubated. I'm just tired of all the set backs, so it's hard to get really excited about this step. He is looking more and more adorable each day. I wish I could just hold him all the time and never let go. :)
Thanks for all your prayers and support!!
Wednesday, March 20, 2013
March 20, 2013 Take 2:
Nothing too exciting happened yesterday for rounds except to say they were still planning on extubation today. They did tweak his ventilator settings a lil and RJ seemed to tolerate that fine. He was more dingy on the monitor for his saturations during the day which was not normal for him. We thought maybe it was b/c they changed the ventilator settings or b/c he had gotten his 2 month shots on Monday. We left mid morning to get some things accomplished at home and when I called back yesterday evening I got some answers. :) Turns out they got an x-ray to check his lungs since he had been so dingy with his saturations. His breathing tube needed to be repositioned and his belly was full of poop!!! At his 6pm care time, he ended up filling 3 diapers full of poop that weighted about 71grams!! So with all that he lost about an ounce of weight, but felt much improved. We came back last night to give him a bath. His oxygen requirements were better and he hadn't been so dingy.
This morning we were skeptical about him being extubated, just b/c this has happened before and not worked. Clinically both the PA and the MD felt he was ready for extubation (removal of the breathing tube), so we said we were cautiously onboard. About 11:10am his breathing tube was removed!! They taped his feeding tube to his lower lip so it wouldn't get pulled out and taped on the new NIPPV tubing. He was feisty and couldn't seem to get comfortable after the switch. He kept turing his head back and forth. At one point both Robert and I had our hands in the isolette putting pressure on his back and head and holding his lil hands. It seemed to calm him down for a lil while and then he'd get mad again. When I changed his diaper I asked the nurse to re-tape his feeding tube to the NIPPV tubing so he could have full movement of his tongue and mouth. We repositioned him and he was much calmer. The PA called us a lil while ago stating that the repeat chest x-ray and blood gas looked good and they had even weaned his FiO2 (oxygen) requirements. We are hoping since he is multiple pounds bigger, he's more developed internally, he's got the steroids and max diuretics on board, that he will stay extubated this time. Now we just have to let him be still as much as possible the next couple days as he gets adjusted to the new settings of the NIPPV. I've been fighting a respiratory cold thing, so haven't been able to hold him the past couple days. It really stinks on top of what we are already dealing with. I blame ACLS for pushing me over the edge. Anyways, please pray hard that RJ can stay extubated this time and we can start making progress towards discharge!!! We are a few days over a month until his actual due date of April 24th. We are currently anticipating going home near that date or later due to his current course of events. No one has mentioned any official dates to us yet. We are trying to just take one day at a time.
Thanks again for all your prayers and support!!
Nothing too exciting happened yesterday for rounds except to say they were still planning on extubation today. They did tweak his ventilator settings a lil and RJ seemed to tolerate that fine. He was more dingy on the monitor for his saturations during the day which was not normal for him. We thought maybe it was b/c they changed the ventilator settings or b/c he had gotten his 2 month shots on Monday. We left mid morning to get some things accomplished at home and when I called back yesterday evening I got some answers. :) Turns out they got an x-ray to check his lungs since he had been so dingy with his saturations. His breathing tube needed to be repositioned and his belly was full of poop!!! At his 6pm care time, he ended up filling 3 diapers full of poop that weighted about 71grams!! So with all that he lost about an ounce of weight, but felt much improved. We came back last night to give him a bath. His oxygen requirements were better and he hadn't been so dingy.
This morning we were skeptical about him being extubated, just b/c this has happened before and not worked. Clinically both the PA and the MD felt he was ready for extubation (removal of the breathing tube), so we said we were cautiously onboard. About 11:10am his breathing tube was removed!! They taped his feeding tube to his lower lip so it wouldn't get pulled out and taped on the new NIPPV tubing. He was feisty and couldn't seem to get comfortable after the switch. He kept turing his head back and forth. At one point both Robert and I had our hands in the isolette putting pressure on his back and head and holding his lil hands. It seemed to calm him down for a lil while and then he'd get mad again. When I changed his diaper I asked the nurse to re-tape his feeding tube to the NIPPV tubing so he could have full movement of his tongue and mouth. We repositioned him and he was much calmer. The PA called us a lil while ago stating that the repeat chest x-ray and blood gas looked good and they had even weaned his FiO2 (oxygen) requirements. We are hoping since he is multiple pounds bigger, he's more developed internally, he's got the steroids and max diuretics on board, that he will stay extubated this time. Now we just have to let him be still as much as possible the next couple days as he gets adjusted to the new settings of the NIPPV. I've been fighting a respiratory cold thing, so haven't been able to hold him the past couple days. It really stinks on top of what we are already dealing with. I blame ACLS for pushing me over the edge. Anyways, please pray hard that RJ can stay extubated this time and we can start making progress towards discharge!!! We are a few days over a month until his actual due date of April 24th. We are currently anticipating going home near that date or later due to his current course of events. No one has mentioned any official dates to us yet. We are trying to just take one day at a time.
Thanks again for all your prayers and support!!
Monday, March 18, 2013
March 18, 2013:
Bath time went well Saturday night. I was lucky to be able to hold RJ after his bath with his clothes on like a real baby in the crook of my arm. It was special to look at him and his wide eyes as I was holding him. He lasted for about 30 min in that position on his back before we put him up. He was getting dingy with his sats. Yesterday we had some good snuggle time on his 2 Month Birthday!!! I held him like a big boy on my chest with his clothes on. He was all sprawled out. It was adorable. They weaned some of his ventilator settings and went up on his feeding rate due to his increased weight. He's at 3lb 15 oz and 16inches!! His FiO2 got down into the 20's yesterday!!! He's making much progress this week and it's exciting. We just finished rounds this morning and they are going to adjust his diuretics based on his weight. Yesterday they went up on his feeds to 34ml over 30 min every 3 hrs. They made an extubation plan today. Since he got his 2 month shots this morning, they are going to wait till tomorrow morning to start another run of steroids. They will have him get 3 doses before extubating sometime on Wednesday!!! It will be a 6 day course of steroids again this time. They are hoping that extuabting in the middle of the course will give him a higher chance of staying off the ventilator. They decided to tweak some of his ventilator settings this morning as well in preparation. We want him to get used to being on lower settings before switching back to NIPPV again. We are optimistic this time that he will do well. He's gained a lot of weight and hopefully that means new lung tissue. He's resting peacefully right now on his belly. The plan is for me to hold him after his noon cares today.
On another exciting note, we set up RJ's crib and changing table yesterday and rearranged his room. Now we need to purchase the crib bedding and get some baskets and essentials for the changing table. We have some wall decorations that need to be put together and hung. It's starting to really take some shape now!!
Thanks again for all your prayers and support!!!
Bath time went well Saturday night. I was lucky to be able to hold RJ after his bath with his clothes on like a real baby in the crook of my arm. It was special to look at him and his wide eyes as I was holding him. He lasted for about 30 min in that position on his back before we put him up. He was getting dingy with his sats. Yesterday we had some good snuggle time on his 2 Month Birthday!!! I held him like a big boy on my chest with his clothes on. He was all sprawled out. It was adorable. They weaned some of his ventilator settings and went up on his feeding rate due to his increased weight. He's at 3lb 15 oz and 16inches!! His FiO2 got down into the 20's yesterday!!! He's making much progress this week and it's exciting. We just finished rounds this morning and they are going to adjust his diuretics based on his weight. Yesterday they went up on his feeds to 34ml over 30 min every 3 hrs. They made an extubation plan today. Since he got his 2 month shots this morning, they are going to wait till tomorrow morning to start another run of steroids. They will have him get 3 doses before extubating sometime on Wednesday!!! It will be a 6 day course of steroids again this time. They are hoping that extuabting in the middle of the course will give him a higher chance of staying off the ventilator. They decided to tweak some of his ventilator settings this morning as well in preparation. We want him to get used to being on lower settings before switching back to NIPPV again. We are optimistic this time that he will do well. He's gained a lot of weight and hopefully that means new lung tissue. He's resting peacefully right now on his belly. The plan is for me to hold him after his noon cares today.
On another exciting note, we set up RJ's crib and changing table yesterday and rearranged his room. Now we need to purchase the crib bedding and get some baskets and essentials for the changing table. We have some wall decorations that need to be put together and hung. It's starting to really take some shape now!!
Thanks again for all your prayers and support!!!
Saturday, March 16, 2013
March 16, 2013:
I'm currently watching my sweet lil boy sound asleep on daddy's chest. It's a precious site for sure. They've been able to keep his FiO2 in the 30's the past couple days which is super good. We haven't seen it this low in weeks. He's growing lots too. Last night his weight was 3 lb 14 oz!! Before you know it he will be 4 lbs!! He seems to be doing better with his secretions. His blood pressure has been elevated the past few days, so they got a renal ultrasound yesterday to check their function. There was some extra calcium buildup, but per the nephrology team, that's normal for preemies. His blood pressure was better today, so they are just going to monitor it. I think they have some special parameters for the blood pressure now. They haven't changed too much on rounds the past couple days. They will get a new x-ray on Monday and that will help them decide about weaning any pressures for the ventilator.
I passed my ACLS, so that's a relief. Now I have to worry about a bunch of online annual training for work and a EKG/Pacer test all due by May 31st. Being in the NICU for 2 months has taken a toll on us. I've been trying to stay healthy, but this weather changing back and forth and my interrupted sleeping pattern have really made it difficult. I think ACLS did me in. I'm fighting off some respiratory bug. I slept a whole lot yesterday and slept in this morning. Funny how I could fall asleep again right now.
Tonight is bath time, so Robert and I plan on coming back for that. It's always fun to see RJ's fuzzy hair all clean and fresh. We hope everyone is having a wonderful Sabbath. Thank you for all your prayers and support.
I'm currently watching my sweet lil boy sound asleep on daddy's chest. It's a precious site for sure. They've been able to keep his FiO2 in the 30's the past couple days which is super good. We haven't seen it this low in weeks. He's growing lots too. Last night his weight was 3 lb 14 oz!! Before you know it he will be 4 lbs!! He seems to be doing better with his secretions. His blood pressure has been elevated the past few days, so they got a renal ultrasound yesterday to check their function. There was some extra calcium buildup, but per the nephrology team, that's normal for preemies. His blood pressure was better today, so they are just going to monitor it. I think they have some special parameters for the blood pressure now. They haven't changed too much on rounds the past couple days. They will get a new x-ray on Monday and that will help them decide about weaning any pressures for the ventilator.
I passed my ACLS, so that's a relief. Now I have to worry about a bunch of online annual training for work and a EKG/Pacer test all due by May 31st. Being in the NICU for 2 months has taken a toll on us. I've been trying to stay healthy, but this weather changing back and forth and my interrupted sleeping pattern have really made it difficult. I think ACLS did me in. I'm fighting off some respiratory bug. I slept a whole lot yesterday and slept in this morning. Funny how I could fall asleep again right now.
Tonight is bath time, so Robert and I plan on coming back for that. It's always fun to see RJ's fuzzy hair all clean and fresh. We hope everyone is having a wonderful Sabbath. Thank you for all your prayers and support.
Wednesday, March 13, 2013
March 13, 2013:
I've been told by multiple people that days in the NICU are up and down. The frustrating thing for me is that I have absolutly no control. I ultimatly feel like the NICU controls my baby and I'm having to constantly obey their rules. What I want for my baby isn't necessarily what they feel is in his best interest and that is starting to frustrate me even more. This morning I was rushing, as most mornings, to get there by 9am for his morning cares. I thrive on being able to DO for my baby in any way I can. Yesterday was rough in our NICU b/c there was a water leak in the ceiling and they had to move all the babies around. We lost our corner spot and are now smack dab in the middle. Two of the families we were getting comfortable seeing had to move out of our nursery 5. Kangaroo time was cut short yesterday during the morning and then last evening the nurse wouldn't let mom McLennan and I give RJ a bath and have kangaroo time. They were worried about him getting stressed and him having trouble keeping up his temperature. I wanted to have the kangaroo time first so he gets nice and warm, plus his sats always go up. Then do the bath afterwards so he's already extra warm. They didn't see it that way. Then I had a bad feeling about today since there were 2 empty beds in our nursery after the ceiling was fixed. My gut instinct was right, and the nursery was closed when we arrived. It turned out to be closed for 2.5 hrs!!!!!!!!!!!!!! I was so mad and frustrated and full of racing emotions. The tears kept welling up. Here they already have limited times for us to be in the NICU and then they couldn't get an admission all night long, but had to wait till 9am right when we arrived....... Robert was at his dentist appointment, so I mustered up the couarge to walk towards him as tears welled up in my eyes walking away from the NICU and our precious boy..... Shortly after Roberts appointment was completed and I had pumped, they allowed us back into the nursery. We did his cares and then I was thankfully able to hold him. Both Robert and I gave up our lunch time so that I could hold him, since our morning routine had been all messed up. RJ did exceptionally well during our kangaroo session and was able to be weaned down on his oxygen requriements. In rounds this morning they had weaned his rate to 15. He is still tolerating his feeds over 30 min. They maxed out his diuretics and it does seem to finally be helping with his secretions. His color looked good today and overall he was a really good boy. Tomorrow they plan on getting an x-ray, so we shall see how much the diuretics have helped. We asked the nurse practitioner from today to come talk with us. She mentioned there is talk about another course of steroids possibly in the future and maybe a longer course. Right now they are wanting to focus on weaning his ventilator settings and getting him to grow. He did gain an ounce last night, so he's up to 3 lb 9 oz!! Tomorrow I have my ACLS renewal class all day, so that's put some extra stress on me and the fact that I can't see him until sometime tomorrow evening. Plus I have to worry about pumping throughout the day and still keeping up with the class. Who knew my life would get so complicated...... I'm so lucky to have such a supportive husband who's right by my side through it all. We truly are blessed. Thanks again for all the prayers, love, and support.
I've been told by multiple people that days in the NICU are up and down. The frustrating thing for me is that I have absolutly no control. I ultimatly feel like the NICU controls my baby and I'm having to constantly obey their rules. What I want for my baby isn't necessarily what they feel is in his best interest and that is starting to frustrate me even more. This morning I was rushing, as most mornings, to get there by 9am for his morning cares. I thrive on being able to DO for my baby in any way I can. Yesterday was rough in our NICU b/c there was a water leak in the ceiling and they had to move all the babies around. We lost our corner spot and are now smack dab in the middle. Two of the families we were getting comfortable seeing had to move out of our nursery 5. Kangaroo time was cut short yesterday during the morning and then last evening the nurse wouldn't let mom McLennan and I give RJ a bath and have kangaroo time. They were worried about him getting stressed and him having trouble keeping up his temperature. I wanted to have the kangaroo time first so he gets nice and warm, plus his sats always go up. Then do the bath afterwards so he's already extra warm. They didn't see it that way. Then I had a bad feeling about today since there were 2 empty beds in our nursery after the ceiling was fixed. My gut instinct was right, and the nursery was closed when we arrived. It turned out to be closed for 2.5 hrs!!!!!!!!!!!!!! I was so mad and frustrated and full of racing emotions. The tears kept welling up. Here they already have limited times for us to be in the NICU and then they couldn't get an admission all night long, but had to wait till 9am right when we arrived....... Robert was at his dentist appointment, so I mustered up the couarge to walk towards him as tears welled up in my eyes walking away from the NICU and our precious boy..... Shortly after Roberts appointment was completed and I had pumped, they allowed us back into the nursery. We did his cares and then I was thankfully able to hold him. Both Robert and I gave up our lunch time so that I could hold him, since our morning routine had been all messed up. RJ did exceptionally well during our kangaroo session and was able to be weaned down on his oxygen requriements. In rounds this morning they had weaned his rate to 15. He is still tolerating his feeds over 30 min. They maxed out his diuretics and it does seem to finally be helping with his secretions. His color looked good today and overall he was a really good boy. Tomorrow they plan on getting an x-ray, so we shall see how much the diuretics have helped. We asked the nurse practitioner from today to come talk with us. She mentioned there is talk about another course of steroids possibly in the future and maybe a longer course. Right now they are wanting to focus on weaning his ventilator settings and getting him to grow. He did gain an ounce last night, so he's up to 3 lb 9 oz!! Tomorrow I have my ACLS renewal class all day, so that's put some extra stress on me and the fact that I can't see him until sometime tomorrow evening. Plus I have to worry about pumping throughout the day and still keeping up with the class. Who knew my life would get so complicated...... I'm so lucky to have such a supportive husband who's right by my side through it all. We truly are blessed. Thanks again for all the prayers, love, and support.
Monday, March 11, 2013
March 11, 2013:
It's been a fun and busy past couple days with family in town. Friday night I got to take my mom in to see RJ for the first time and help give him a bath. Robert's parents were also there and got to see him as well. Sabbath I got to hold the lil guy again for 2.5hrs!! It was wonderful. My mom was there most of the time and got to soak up more grandson time. Once they get him out and he gets settled on my chest, he typically has his eyes open for 5-10 min and then falls asleep. I asked my mom to read RJ a bible story and he kept his eyes open off and on throughout the whole story. He didn't want to miss anything. Finally his eyes got heavy and he fell asleep. It was adorable. The grandparents had fun switching places seeing RJ throughout the weekend. The mom's in particular wanted to stuff him in their purses and sneak out with him. :)
Saturday night some of our friends put on a baby shower for RJ. It was fun to have this special celebration for RJ and see lots of smiling faces. He made out quite well in the bath department. It's one of my most favorite things to do for him, so I can't wait to bring him home and use all the fun towels, bath chair, etc. Thank you so much to everyone who came and for all the effort of those who hosted the shower!!
Yesterday was major house organization day. We started the process for moving furniture around to make an actual baby room. Robert's mom got paint supplies to start that project, while my mom helped me sort through and organize all the baby gifts. Robert took his dad to see RJ one more time before he flew home and then the men used their muscles to help rearrange our house. :) Sunday evening we went to the hospital to give RJ a bath and I had Robert's mom help this time. I love seeing his fuzzy hair after it's all clean and dry.
Today during rounds they didn't make many changes. They decreased his feeds to give 30mls over 30min. So far he's been tolerating the progression to true bolus feeds that don't have to be given on a pump. His chest x-ray looked more hazy today, so they later talked about increasing his diuretics since he's not even on the full dosage currently. I hope they do b/c it's supposed to help with all the secretions he's been having. Last night during his bath and each time I kangaroo, they have to suction his mouth and breathing tube multiple times. I've been getting frustrated that his lungs don't seem to be progressing anywhere. I keep getting the answer that it's just going to take time and he needs to feed and grow. I hate not having any control. RJ is due for his next eye exam which should have already happened a few hours ago. Last time he didn't appreciate it very much. I'm hoping he tolerates it better this time. To end on a positive note, I got to hold RJ for 3 hrs today!!! It was the longest time yet. I would have stayed longer, but it was time for his diaper change. I was able to coax an extra 30 min from the nurses, b/c I didn't want to let him go. :) Oh dear, I almost forgot to mention that we weighed RJ last night and he doubled his birth weight!! He's 3 lb 8 oz!!!
Thanks for all your continued prayers and support. I'm needing positive vibes sent my way. :)
It's been a fun and busy past couple days with family in town. Friday night I got to take my mom in to see RJ for the first time and help give him a bath. Robert's parents were also there and got to see him as well. Sabbath I got to hold the lil guy again for 2.5hrs!! It was wonderful. My mom was there most of the time and got to soak up more grandson time. Once they get him out and he gets settled on my chest, he typically has his eyes open for 5-10 min and then falls asleep. I asked my mom to read RJ a bible story and he kept his eyes open off and on throughout the whole story. He didn't want to miss anything. Finally his eyes got heavy and he fell asleep. It was adorable. The grandparents had fun switching places seeing RJ throughout the weekend. The mom's in particular wanted to stuff him in their purses and sneak out with him. :)
Saturday night some of our friends put on a baby shower for RJ. It was fun to have this special celebration for RJ and see lots of smiling faces. He made out quite well in the bath department. It's one of my most favorite things to do for him, so I can't wait to bring him home and use all the fun towels, bath chair, etc. Thank you so much to everyone who came and for all the effort of those who hosted the shower!!
Yesterday was major house organization day. We started the process for moving furniture around to make an actual baby room. Robert's mom got paint supplies to start that project, while my mom helped me sort through and organize all the baby gifts. Robert took his dad to see RJ one more time before he flew home and then the men used their muscles to help rearrange our house. :) Sunday evening we went to the hospital to give RJ a bath and I had Robert's mom help this time. I love seeing his fuzzy hair after it's all clean and dry.
Today during rounds they didn't make many changes. They decreased his feeds to give 30mls over 30min. So far he's been tolerating the progression to true bolus feeds that don't have to be given on a pump. His chest x-ray looked more hazy today, so they later talked about increasing his diuretics since he's not even on the full dosage currently. I hope they do b/c it's supposed to help with all the secretions he's been having. Last night during his bath and each time I kangaroo, they have to suction his mouth and breathing tube multiple times. I've been getting frustrated that his lungs don't seem to be progressing anywhere. I keep getting the answer that it's just going to take time and he needs to feed and grow. I hate not having any control. RJ is due for his next eye exam which should have already happened a few hours ago. Last time he didn't appreciate it very much. I'm hoping he tolerates it better this time. To end on a positive note, I got to hold RJ for 3 hrs today!!! It was the longest time yet. I would have stayed longer, but it was time for his diaper change. I was able to coax an extra 30 min from the nurses, b/c I didn't want to let him go. :) Oh dear, I almost forgot to mention that we weighed RJ last night and he doubled his birth weight!! He's 3 lb 8 oz!!!
Thanks for all your continued prayers and support. I'm needing positive vibes sent my way. :)
Friday, March 8, 2013
March 8, 2013:
I know everyone is probably wondering where I am and why there hasn't been an update recently. Honestly it's been another exhausting couple days and lots of events happening. Everyone is okay, just worn out. So, where should I start...
The last time I blogged RJ and I had a wonderful kangaroo time and were nice and relaxed. The next day, which was Wednesday, the morning xray looked worse. He had some right upper lobe atalectasis and his respiratory gas levels were a lil worse. They told me I should hold off on holding him due to his respiratory status. Of course that broke my heart... I stayed there with him holding his head and hands and trying to still be as close as possible. He was agitated and would turn his head back and forth during the day. He would drop his saturation level too. They would suction him and it would get a lil better. They had to go up on his FiO2, oxygen, level as well. In the afternoon I spoke w/ the nurse practitioner and she ordered another xray. It was less expanded, so she went up on his NIPPV pressures. Robert Facetimed with me around 8pm right after his ED shift. Robert was able to soothe RJ and put him to sleep. He looked really peaceful and we felt better about his status. Then around 2am Thursday morning I got a phone call from the NICU saying RJ was looking worse. He was mottled and ashen looking in his color. They had to go up on his oxygen levels and he was just struggling to breath. He was starting to wear out and they were probably going to have to reintubate him. They wanted to do it before he got really tired like last time. My tears didn't even hold off until I got off the phone. I woke Robert up and after I hung up the phone I just cried.... Neither of us slept very well the rest of the night. We just lay there with our brains racing. An hour or so later Robert called to get an update from RJ's nurse and shortly after that the nurse practitioner, who'd called the first time, called to give me an update. She said they ended up doing a sepsis workup b/c he had a lil hard time recovering after the intubation, but was doing fine now. So when I went to see RJ later that morning, I knew they wouldn't let me hold him since he had just been reintubated and they would want him to have a day to get re-adjusted. He looked less agitated after being reintubated and wasn't as tired. He opened is eyes with his care times and was still feisty with us, so that was encouraging. He wasn't lethargic like last time when he was reintubated.
Thursday was also a tough day for me cause I went to see the stroke MD for a continued follow-up regarding my dissection. He showed me the images and it was crazy to see the cut in my right internal carotid. He showed me a couple different views. He said there is significant narrowing or stricture of that vessel and he wants to get an angiogram to look at the blood flow better and rule out if there is a pseudoaneurysm (a leakage of blood forming a pocket around the carotid artery. It's not bleeding out and it's presumably not getting bigger). Of course I was by myself b/c Robert was at work. I was kind of numb taking all this information in. It was a little overwhelming. I hate needles, like a lot of you know, so the thought of a needle and catheter having to go into my groin just gives me the shivers. I'm making sure I have a great Anesthesia team on board to give me some good meds so that I don't feel or remember the whole experience. Anyways, that test is scheduled for the end of March on the 29th. Please say big prayers that there is no pseudoaneurysm!!! Needless to say, we were exhausted Thursday night and I didn't have the energy to blog after being on yet another emotional roller-coster.
Today started out brighter and better with the sun shining and we were optimistic about holding RJ. Turns out we got to kangaroo for 2.5 hrs!!! That's the longest he's let Robert or I hold him!!! It was so rewarding after the past couple tough days. A couple times he would pick up his had and move it around like he was agitated, we would suction him, and his oxygen level would get better and he would calm down and fall right back asleep. It was truly precious.
They are now giving his feeds over 1.5hrs every 3 hrs and he's been tolerating that well today. One of the blood cultures came back positive, so they are waiting till the final read before stopping the Ampicillian and Gentamycin they started right after reintubation. Yesterday he got a couple different doses of blood, so his color looks a lot better today as well.
Tonight we had some grandparents in town!!! My mom saw him for the first time and was able to be back in the nursery with me while I gave RJ a bath. Robert and his parents were on FaceTime watching. Robert's mom switched out and came to help put lotion on him and then Robert's dad came back to hold his hand before I wrapped him up like a lil burrito. It was a very rewarding evening and I felt very satisfied and complete getting to DO all these different things for our lil son. It made me feel like a mommy. :) Robert and I tucked him in, put him to sleep, and quietly left. Sigh... :)
I know everyone is probably wondering where I am and why there hasn't been an update recently. Honestly it's been another exhausting couple days and lots of events happening. Everyone is okay, just worn out. So, where should I start...
The last time I blogged RJ and I had a wonderful kangaroo time and were nice and relaxed. The next day, which was Wednesday, the morning xray looked worse. He had some right upper lobe atalectasis and his respiratory gas levels were a lil worse. They told me I should hold off on holding him due to his respiratory status. Of course that broke my heart... I stayed there with him holding his head and hands and trying to still be as close as possible. He was agitated and would turn his head back and forth during the day. He would drop his saturation level too. They would suction him and it would get a lil better. They had to go up on his FiO2, oxygen, level as well. In the afternoon I spoke w/ the nurse practitioner and she ordered another xray. It was less expanded, so she went up on his NIPPV pressures. Robert Facetimed with me around 8pm right after his ED shift. Robert was able to soothe RJ and put him to sleep. He looked really peaceful and we felt better about his status. Then around 2am Thursday morning I got a phone call from the NICU saying RJ was looking worse. He was mottled and ashen looking in his color. They had to go up on his oxygen levels and he was just struggling to breath. He was starting to wear out and they were probably going to have to reintubate him. They wanted to do it before he got really tired like last time. My tears didn't even hold off until I got off the phone. I woke Robert up and after I hung up the phone I just cried.... Neither of us slept very well the rest of the night. We just lay there with our brains racing. An hour or so later Robert called to get an update from RJ's nurse and shortly after that the nurse practitioner, who'd called the first time, called to give me an update. She said they ended up doing a sepsis workup b/c he had a lil hard time recovering after the intubation, but was doing fine now. So when I went to see RJ later that morning, I knew they wouldn't let me hold him since he had just been reintubated and they would want him to have a day to get re-adjusted. He looked less agitated after being reintubated and wasn't as tired. He opened is eyes with his care times and was still feisty with us, so that was encouraging. He wasn't lethargic like last time when he was reintubated.
Thursday was also a tough day for me cause I went to see the stroke MD for a continued follow-up regarding my dissection. He showed me the images and it was crazy to see the cut in my right internal carotid. He showed me a couple different views. He said there is significant narrowing or stricture of that vessel and he wants to get an angiogram to look at the blood flow better and rule out if there is a pseudoaneurysm (a leakage of blood forming a pocket around the carotid artery. It's not bleeding out and it's presumably not getting bigger). Of course I was by myself b/c Robert was at work. I was kind of numb taking all this information in. It was a little overwhelming. I hate needles, like a lot of you know, so the thought of a needle and catheter having to go into my groin just gives me the shivers. I'm making sure I have a great Anesthesia team on board to give me some good meds so that I don't feel or remember the whole experience. Anyways, that test is scheduled for the end of March on the 29th. Please say big prayers that there is no pseudoaneurysm!!! Needless to say, we were exhausted Thursday night and I didn't have the energy to blog after being on yet another emotional roller-coster.
Today started out brighter and better with the sun shining and we were optimistic about holding RJ. Turns out we got to kangaroo for 2.5 hrs!!! That's the longest he's let Robert or I hold him!!! It was so rewarding after the past couple tough days. A couple times he would pick up his had and move it around like he was agitated, we would suction him, and his oxygen level would get better and he would calm down and fall right back asleep. It was truly precious.
They are now giving his feeds over 1.5hrs every 3 hrs and he's been tolerating that well today. One of the blood cultures came back positive, so they are waiting till the final read before stopping the Ampicillian and Gentamycin they started right after reintubation. Yesterday he got a couple different doses of blood, so his color looks a lot better today as well.
Tonight we had some grandparents in town!!! My mom saw him for the first time and was able to be back in the nursery with me while I gave RJ a bath. Robert and his parents were on FaceTime watching. Robert's mom switched out and came to help put lotion on him and then Robert's dad came back to hold his hand before I wrapped him up like a lil burrito. It was a very rewarding evening and I felt very satisfied and complete getting to DO all these different things for our lil son. It made me feel like a mommy. :) Robert and I tucked him in, put him to sleep, and quietly left. Sigh... :)
Wednesday, March 6, 2013
March 6, 2013:
RJ is having to get used to the high flow nasal cannula again (NIPPV). He did great with our kangaroo time last night and slept well. Today he's been real dingy with is O2 sats and they had to go up on his FiO2 (oxygen). He was real restless all morning and afternoon. He would turn his head back and forth and get fussy with his cares. At rounds this morning they said his xray showed right upper lobe atelectasis, but was well expanded. They didn't want to make any changes to the NIPPV settings. He was wheezy and had gotten a lil bit of albuterol this morning. It tends to make is heart rate high, so they wanted to use it sparingly. Due to his situation, they didn't want me to hold him which could cause more stress to his oxygen demand being moved in and out of the isolette. Of course that broke my heart and caused me to be said. It's the worst feeling like I've mentioned before not being able to hold my baby... I was hoping after lunch his lungs would sound better and the possibility existed for me to hold him. His lungs sounded a lil worse, and he was still very figity and restless. The nurse practitioner ended up talking w/ the nurse and I and ordered an xray. It showed less expansion, so she increased the peep setting on the NIPPV. He seemed to be happier with that. She also in talking w/ the Attending ordered for a Xopenex treatment every 12 hrs. It doesn't cause the elevated heart rate like Albuterol. He got one treatment before I left this afternoon. It's a type of respiratory inhaled treatment which ended up opening up his lungs and they sounded better per the Respiratory Therapists assessment. He was seeming to rest easier as well overall. I left him at 3pm looking peaceful. It's his scheduled bath time tonight, but due to his day events we are going to hold off. It might stress him out too much. It really stinks to be hindered in the amount of interaction I can have with my baby...
I've tried to be productive this afternoon, but the minutes seem to be slipping away. I have my ACLS renewal next week that I need to be studying for, but it's hard when I have so many other things I'm thinking about and pumping every 2-3 hrs. Which reminds me that's where I need to head now. Please pray RJ has a peaceful night of sleep and that he will feel stronger tomorrow. We want to do everything possible to keep him extubated!!
RJ is having to get used to the high flow nasal cannula again (NIPPV). He did great with our kangaroo time last night and slept well. Today he's been real dingy with is O2 sats and they had to go up on his FiO2 (oxygen). He was real restless all morning and afternoon. He would turn his head back and forth and get fussy with his cares. At rounds this morning they said his xray showed right upper lobe atelectasis, but was well expanded. They didn't want to make any changes to the NIPPV settings. He was wheezy and had gotten a lil bit of albuterol this morning. It tends to make is heart rate high, so they wanted to use it sparingly. Due to his situation, they didn't want me to hold him which could cause more stress to his oxygen demand being moved in and out of the isolette. Of course that broke my heart and caused me to be said. It's the worst feeling like I've mentioned before not being able to hold my baby... I was hoping after lunch his lungs would sound better and the possibility existed for me to hold him. His lungs sounded a lil worse, and he was still very figity and restless. The nurse practitioner ended up talking w/ the nurse and I and ordered an xray. It showed less expansion, so she increased the peep setting on the NIPPV. He seemed to be happier with that. She also in talking w/ the Attending ordered for a Xopenex treatment every 12 hrs. It doesn't cause the elevated heart rate like Albuterol. He got one treatment before I left this afternoon. It's a type of respiratory inhaled treatment which ended up opening up his lungs and they sounded better per the Respiratory Therapists assessment. He was seeming to rest easier as well overall. I left him at 3pm looking peaceful. It's his scheduled bath time tonight, but due to his day events we are going to hold off. It might stress him out too much. It really stinks to be hindered in the amount of interaction I can have with my baby...
I've tried to be productive this afternoon, but the minutes seem to be slipping away. I have my ACLS renewal next week that I need to be studying for, but it's hard when I have so many other things I'm thinking about and pumping every 2-3 hrs. Which reminds me that's where I need to head now. Please pray RJ has a peaceful night of sleep and that he will feel stronger tomorrow. We want to do everything possible to keep him extubated!!
Tuesday, March 5, 2013
March 5, 2013:
Yesterday Robert had the day off, so we saw RJ in the morning and then left early afternoon to run errands. Before we knew it, it was past our bedtime and I hadn't blogged yet. They decided to hold off on extubation yesterday and try weaning some more settings on his ventilator. They also started lasix to help get some fluid off. It's a 3 day course and then they will start a Aldactone and Diuril for continued help keeping his fluid off. He was quite feisty again trying to get his breathing tube out. The nurses kept having to reposition his head so he could still breath. It's so incredible how strong he is and yet so little.
This morning at rounds they decided to extubate today!!! Today he's getting his last dose of steroids and second day of lasix, so a good day to try extubation!! He was pullin at his tubes again this morning and turing his head around. Robert was able to come up from the ED for the actual extubation. We were able to be right there with him!! It was awesome!! We got to see his cute lil face afterwards and it was a beautiful, crying RJ face. :) I called to check on him later this afternoon, and he was still doing great. He had pulled out his feeding tube, so the nurse had to put that back in and re-tape it. RJ just wants all the tubes out for good now!! :) Now I feel like we are making progress again and can move closer to breastfeeding!! I want to feel like a real mommy. Watching a machine extract my milk isn't the most exciting thing to watch. I would much rather hold my baby and give it to him directly!! Anyways, they have switched RJ to bolus feeds. They are starting him out slow, giving his dose over 2.5 hrs, then holding for 30min. Now we get to do his cares every 3 hrs (change diaper, clean face, clean mouth). I'm also had to step up the pumping department to handle his increased feedings, so every 2-3 hrs I'm hooked to that silly machine. Sigh... I will be happy to never see it again. :)
I'm about to head back in for the evening to see him and all his glory after the breathing tubes been removed. This afternoon I had to leave immediately after the extubation for a meeting. Now maybe I can hold him for a lil while this evening. Thanks for all the love and support!!
Yesterday Robert had the day off, so we saw RJ in the morning and then left early afternoon to run errands. Before we knew it, it was past our bedtime and I hadn't blogged yet. They decided to hold off on extubation yesterday and try weaning some more settings on his ventilator. They also started lasix to help get some fluid off. It's a 3 day course and then they will start a Aldactone and Diuril for continued help keeping his fluid off. He was quite feisty again trying to get his breathing tube out. The nurses kept having to reposition his head so he could still breath. It's so incredible how strong he is and yet so little.
This morning at rounds they decided to extubate today!!! Today he's getting his last dose of steroids and second day of lasix, so a good day to try extubation!! He was pullin at his tubes again this morning and turing his head around. Robert was able to come up from the ED for the actual extubation. We were able to be right there with him!! It was awesome!! We got to see his cute lil face afterwards and it was a beautiful, crying RJ face. :) I called to check on him later this afternoon, and he was still doing great. He had pulled out his feeding tube, so the nurse had to put that back in and re-tape it. RJ just wants all the tubes out for good now!! :) Now I feel like we are making progress again and can move closer to breastfeeding!! I want to feel like a real mommy. Watching a machine extract my milk isn't the most exciting thing to watch. I would much rather hold my baby and give it to him directly!! Anyways, they have switched RJ to bolus feeds. They are starting him out slow, giving his dose over 2.5 hrs, then holding for 30min. Now we get to do his cares every 3 hrs (change diaper, clean face, clean mouth). I'm also had to step up the pumping department to handle his increased feedings, so every 2-3 hrs I'm hooked to that silly machine. Sigh... I will be happy to never see it again. :)
I'm about to head back in for the evening to see him and all his glory after the breathing tubes been removed. This afternoon I had to leave immediately after the extubation for a meeting. Now maybe I can hold him for a lil while this evening. Thanks for all the love and support!!
Sunday, March 3, 2013
March 3, 2013:
RJ is feeling great today cause he was fighting the ventilator when we arrived this evening. He was lying on his stomach and turning his head back and forth. He had tried doing some man push-ups earlier this afternoon the nurse said. They weaned his rate on the ventilator today down to 15 and his Fio2 is in the 30s. He oxygen sats were in the 80's-90's when we arrived. He has a couple more days of the decreased dose of steroids left. They are going to get an xray in the morning and hope to still plan on weaning and plan for extubation this week. I thought doing a lil infant massage would help to calm him down, but he just stayed fussy. So, the nurse got a snuggy for us and I flipped him on his back and helped wrap him up. He started to finally calm down and relax before we were kicked out of the nursery because of a new admit. It was just bad timing.
Our plan is to give RJ a bath tonight. We want to help open up his lungs and get him ready for extubation!! He has hit the 3lb 3oz mark. Getting closer to doubling his weight!! They increased his feeds to 11ml per hr. Now that he's past 32 wks, they are in the range to start bottle feeding, but we have to get on less oxygen support and make sure he can tolerated bolus feeds. I'm hoping for some changes to take place in the next couple weeks. :)
It was nice that Robert was off today and we were able to get some things done around the house before heading into the hospital. It's so tricky trying to fit home life around the random times the NICU is open. I so wish they had an open door policy like the rest of the hospital, at least for parents. Anyways, we will try to be good parents and follow the rules. :)
Thanks for all the love and support we continue to receive. We are truly blessed.
RJ is feeling great today cause he was fighting the ventilator when we arrived this evening. He was lying on his stomach and turning his head back and forth. He had tried doing some man push-ups earlier this afternoon the nurse said. They weaned his rate on the ventilator today down to 15 and his Fio2 is in the 30s. He oxygen sats were in the 80's-90's when we arrived. He has a couple more days of the decreased dose of steroids left. They are going to get an xray in the morning and hope to still plan on weaning and plan for extubation this week. I thought doing a lil infant massage would help to calm him down, but he just stayed fussy. So, the nurse got a snuggy for us and I flipped him on his back and helped wrap him up. He started to finally calm down and relax before we were kicked out of the nursery because of a new admit. It was just bad timing.
Our plan is to give RJ a bath tonight. We want to help open up his lungs and get him ready for extubation!! He has hit the 3lb 3oz mark. Getting closer to doubling his weight!! They increased his feeds to 11ml per hr. Now that he's past 32 wks, they are in the range to start bottle feeding, but we have to get on less oxygen support and make sure he can tolerated bolus feeds. I'm hoping for some changes to take place in the next couple weeks. :)
It was nice that Robert was off today and we were able to get some things done around the house before heading into the hospital. It's so tricky trying to fit home life around the random times the NICU is open. I so wish they had an open door policy like the rest of the hospital, at least for parents. Anyways, we will try to be good parents and follow the rules. :)
Thanks for all the love and support we continue to receive. We are truly blessed.
Saturday, March 2, 2013
March 2, 2013:
I think I just might fall asleep w/ RJ in his isolette. The lights are low and my body says lets sleep. :) I held him for a lil over an hr this morning. He was restless to start and finally calmed down. Then he got a bunch of mucous build up and was dropping his sats near the end of our holding time, so we snuggled for almost 1.5 hrs. Like always it was wonderful to hold him. The team rounded and changed a ventilator setting and said it was ok to give RJ a back every other night if he tolerated it. Last night I gave RJ a bath while daddy took lots of pics. RJ's oxygen level went up and they were able to wean him off his oxygen. I did get to hold him for about 1.5 hr's last night as well after his bath. I would have held him longer, but we were getting sleepy and Robert had his first ER shift today.
RJ is getting his second dose of blood and then hopefully they can remove the IV in his head. Right now he's sleeping peacefully. The team is hoping that if his O2 requirement gets better and he can tolerate the pressures on his ventilator being weaned, that maybe this wk he can be extubated. We need to pray hard and keep our fingers crossed. The nurse told me this morning that yesterday RJ would flip his head in such a way as to tangle the breathing tube. The nurses would have to come and unkink the tube. Our lil man is a fighter!! :)
Happy Sabbath!!
I think I just might fall asleep w/ RJ in his isolette. The lights are low and my body says lets sleep. :) I held him for a lil over an hr this morning. He was restless to start and finally calmed down. Then he got a bunch of mucous build up and was dropping his sats near the end of our holding time, so we snuggled for almost 1.5 hrs. Like always it was wonderful to hold him. The team rounded and changed a ventilator setting and said it was ok to give RJ a back every other night if he tolerated it. Last night I gave RJ a bath while daddy took lots of pics. RJ's oxygen level went up and they were able to wean him off his oxygen. I did get to hold him for about 1.5 hr's last night as well after his bath. I would have held him longer, but we were getting sleepy and Robert had his first ER shift today.
RJ is getting his second dose of blood and then hopefully they can remove the IV in his head. Right now he's sleeping peacefully. The team is hoping that if his O2 requirement gets better and he can tolerate the pressures on his ventilator being weaned, that maybe this wk he can be extubated. We need to pray hard and keep our fingers crossed. The nurse told me this morning that yesterday RJ would flip his head in such a way as to tangle the breathing tube. The nurses would have to come and unkink the tube. Our lil man is a fighter!! :)
Happy Sabbath!!
Friday, March 1, 2013
March 1, 2013:
Our lil man was all snuggled up in a new wrap and lying on his back. He was peaceful looking. They had needed to go up on his O2 requirement on the ventilator. This morning he got half his blood dose, so they had to put a new IV in and they happened to find a good one in his head. That means I can't wash his hair tonight for his bath. That's one of my favorite parts is to fluff up his hair. Oh well, the blood should help to perk him up. They have been able to wean his oxygen some during today. At rounds this morning they adjusted some of his ventilator settings, but that's about it. They want to wean him off the ventilator and get him extubated before they start bolus feeds. Right now he's getting a continuous dose of my beefed up breast milk. They've added calories and Beneprotein to it. So not much else to report on the RJ front.
It's been snowing all day long the past couple days, but nothing really has been sticking. I had my 6wk post-op OB appt this afternoon and from her standpoint I'm cleared and ready to go full steam ahead, but my bp was slightly elevated in the 140's/80's, so my MD wanted to check w/ Neuro to see if they were ok with that bp and what type of activity restrictions if any they wanted. Unfortunately she wasn't able to get in touch w/ anyone during my appt, so I'm waiting for a call back from the OB clinic. For now I will continue to relax and just walk for exercise.
I hope everyone is able to have a fun relaxing weekend. Robert starts his ER rotation tomorrow, so that will be a new twist to our routine. I pray it doesn't add to much stress to him and that he can still find time to see RJ.
Thanks again for all the love, support, and prayers. We couldn't make it without them.
Happy Sabbath!!!
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