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| Daddy getting to move RJ for Kangaroo care |
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| Mommy all prepared for sterile PICC line placement in baby a few beds down |
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| Sweet lil family |
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| Mommy and RJ are in heaven |
Thursday, February 28, 2013
February 28, 2013:
Time has sure gotten away from me the past few days. Thankfully all my tests and MD appointments have turned out well and I'm going to be fine with just the daily 325mg Aspirin. I should probably stay away from doing extreme sports like sky diving for the time being as well. Anyways, Robert and I decided to head to the mountains of West Virginia Sabbath afternoon for our preplanned ski trip w/ a group of friends from college/med school. Things were stable with RJ and we really haven't been out of the hospital since beginning of January, so it was a much needed break. I have to admit it was hard for me to fully relax and enjoy myself. My world has changed so much in the past few months and it's hard for me to try and mesh my pre delivery and post delivery worlds together. It's hard for me to be compelety happy when my lil boy is sick and my hands are tied to fix him. Being patient was something I felt pretty good at until this NICU experience happened. There is so much waiting and I just want to speed things up. I want quicker progress and when those bumps happen so slow progress, such as reintubation, it seems like we are taking a GIANT leap backwards. I know people tell me they are amazed at how strong Robert and I are. Honestly we don't feel strong all the time. We are just trying to take one day at a time. It's a tricky thing to juggle home life, work life, and hospital life. I can't believe that tomorrow is already my 6 wk post-op appt. Time sure is slowly flying by. :)
We are finally starting to see RJ perk up again. He was quite fiesty this afternoon when we did his noon cares. He and I had a real good Kangaroo time and then he started squirming and told us he was ready to get back into his isolette. Once back he was stretching and moving his lil arms like crazy. They were getting a hold of his mouth tubes, so Robert had to hold his arms still while I changed his diaper. We don't want the lil guy extubating himself! They have been increasing his feeds the past couple days, so he's at 10mls an hr. I really need to step up the pumping so he has enough milk. :) His Hct is down to 25.7, so starting tomorrow they are going to split a dose of blood over 2 days. They have been leary of giving him blood too quick b/c it knocks out his body's drive to produce it's own red blood cells. They have been weaning his rate on the ventillator. He has been taking more breathes on his own which is fantastic. They started him on steroids this week to help beef up his lungs. His Attending this wk said this will help with extubation. They are wanting him to be successful this time and the steroids help decrease the inflammation in the lungs. He's still having a log of secretions in his mouth and nose. I think he just wants his breathing tube out. :) At 3 am tomorrow he will of had the breathing tube for a whole wk. I'm hoping they can get it out sometime this coming wk. The rest of his body has been functioning properly, so we are very greatful for that. Like I said before his weight fluctuates depending on the poopy diapers, but he's hovering around the 3lb mark. I'm hoping the increase in his feeds will bump him up to double his birth weight!!
I hope you enjoy the new pics I'm going to put up. He was silly today and looked like he was going to jump right out of his bed. The nurses said he arched himself back multiple times even after they snuggled him back into the right position. He has a mind of his own. I think I'm going to have my hands full. :)
Time has sure gotten away from me the past few days. Thankfully all my tests and MD appointments have turned out well and I'm going to be fine with just the daily 325mg Aspirin. I should probably stay away from doing extreme sports like sky diving for the time being as well. Anyways, Robert and I decided to head to the mountains of West Virginia Sabbath afternoon for our preplanned ski trip w/ a group of friends from college/med school. Things were stable with RJ and we really haven't been out of the hospital since beginning of January, so it was a much needed break. I have to admit it was hard for me to fully relax and enjoy myself. My world has changed so much in the past few months and it's hard for me to try and mesh my pre delivery and post delivery worlds together. It's hard for me to be compelety happy when my lil boy is sick and my hands are tied to fix him. Being patient was something I felt pretty good at until this NICU experience happened. There is so much waiting and I just want to speed things up. I want quicker progress and when those bumps happen so slow progress, such as reintubation, it seems like we are taking a GIANT leap backwards. I know people tell me they are amazed at how strong Robert and I are. Honestly we don't feel strong all the time. We are just trying to take one day at a time. It's a tricky thing to juggle home life, work life, and hospital life. I can't believe that tomorrow is already my 6 wk post-op appt. Time sure is slowly flying by. :)
We are finally starting to see RJ perk up again. He was quite fiesty this afternoon when we did his noon cares. He and I had a real good Kangaroo time and then he started squirming and told us he was ready to get back into his isolette. Once back he was stretching and moving his lil arms like crazy. They were getting a hold of his mouth tubes, so Robert had to hold his arms still while I changed his diaper. We don't want the lil guy extubating himself! They have been increasing his feeds the past couple days, so he's at 10mls an hr. I really need to step up the pumping so he has enough milk. :) His Hct is down to 25.7, so starting tomorrow they are going to split a dose of blood over 2 days. They have been leary of giving him blood too quick b/c it knocks out his body's drive to produce it's own red blood cells. They have been weaning his rate on the ventillator. He has been taking more breathes on his own which is fantastic. They started him on steroids this week to help beef up his lungs. His Attending this wk said this will help with extubation. They are wanting him to be successful this time and the steroids help decrease the inflammation in the lungs. He's still having a log of secretions in his mouth and nose. I think he just wants his breathing tube out. :) At 3 am tomorrow he will of had the breathing tube for a whole wk. I'm hoping they can get it out sometime this coming wk. The rest of his body has been functioning properly, so we are very greatful for that. Like I said before his weight fluctuates depending on the poopy diapers, but he's hovering around the 3lb mark. I'm hoping the increase in his feeds will bump him up to double his birth weight!!
I hope you enjoy the new pics I'm going to put up. He was silly today and looked like he was going to jump right out of his bed. The nurses said he arched himself back multiple times even after they snuggled him back into the right position. He has a mind of his own. I think I'm going to have my hands full. :)
Monday, February 25, 2013
February 25, 2013:
Not much to report for our growing lil RJ. He looked all comfy and cozy when we saw him briefly this evening. He opened his eyes off and on when he heard our voices. He was stretching and lifting his head some, so those are signs to us that he's starting to feel more like himself. His FiO2 was around 40% and he has been dingy again today, but it's due to all the secretions he's producing. Thankfully all his cultures are negative and the secretions he has are clear. Thankgoodness no infection!! He's right on tract for his weight and head circumferance. They started Beneprotein last week I think to help with his length. He's made a slight increase on that front. It's also really hard to get an accurate length on the lil guy as well. He was looking as cute as ever this evening. I'm excited about the prospects of holding him again tomorrow. It's been 4 days of trying to let him rest up, it's time for mommy to hold him. Sorry, no new pics tonight. We will try to get an updated one tomorrow. Thanks for all your love and support.
Not much to report for our growing lil RJ. He looked all comfy and cozy when we saw him briefly this evening. He opened his eyes off and on when he heard our voices. He was stretching and lifting his head some, so those are signs to us that he's starting to feel more like himself. His FiO2 was around 40% and he has been dingy again today, but it's due to all the secretions he's producing. Thankfully all his cultures are negative and the secretions he has are clear. Thankgoodness no infection!! He's right on tract for his weight and head circumferance. They started Beneprotein last week I think to help with his length. He's made a slight increase on that front. It's also really hard to get an accurate length on the lil guy as well. He was looking as cute as ever this evening. I'm excited about the prospects of holding him again tomorrow. It's been 4 days of trying to let him rest up, it's time for mommy to hold him. Sorry, no new pics tonight. We will try to get an updated one tomorrow. Thanks for all your love and support.
Sunday, February 24, 2013
February 24, 2013:
Well RJ is doing a lil better today. He's still pretty tuckered out still. His nurse said he barely opened his eyes once today during his cares and then closed them quickly. :) The nurse practitioner said he had better color today and overall looked better. The team decided to d/c the antibiotics. Since he's been so dingy with his sats and desating some, they've decided to split his caffeine dose so he has some every 12 hrs. The caffeine helps preemies breathe. He's still making a lot of secretions which is causing him to desat, so they had taken a sample of his nose secretions I believe yesterday. They are waiting on those results. The nurses called it a snog test. I'm not sure if that is the real medical test name or their nickname for it. :) They are thinking that maybe he has a cold. The nurse said he's slowly perking up today. I'm hoping that all the sleep he's getting will help him be more himself by tomorrow. We haven't been able to hold him at all this weekend. :( His nurse today said his HR was down in the 140's when I called this morning. Thankfully it's trending down. Thanks for all the extra prayers over the past couple days. I think we are pulling out of our lil slump. Oh I keep forgetting to mention that RJ's gaining weight!! He was 2lb 14oz the other night!!! Almost to the 3lb mark!! That's a positive for sure. I think that's about it for now. Till next time...
Saturday, February 23, 2013
February 23, 2013:
So our lil man looks nice and peaceful this afternoon. Unfortunately he's still too tuckered out for me to kangaroo care. I'm pretty bummed about that. His lil heart is pumping in the 200's right now and they are trying to figure out why. He didn't have an albuterol tx this morning, which causes his HR to elevated. He's not agitated and his Hct from yesterday was 32 which doesn't require any transfusion typically at this age. The nurse practitioner came and saw him and is aware of his HR. I'm also bummed b/c the night nurse didn't relay the message that we were going to be here at noon for RJ's cares. So, she had finished changing his diaper and cleaning his face right before we arrived. He dropped his heart rate when turned on his back to complete his cares as well. That's not his normal reaction. He usually does great on his back at least for awhile.
So far his respiratory and bacterial cultures have come back negative. They are still waiting for the viral cultures for RSV and Flu to come back. They took cultures of his urine b/c he's now at the age for possible UTI as well. I'm not sure about the results of that yet. He's getting a couple antibiotics as prophylactic: Ampicillian and Gentamicin. His urine output has picked up and he's already had 2 poopy diapers since our nurse came on this morning, so that's all encouraging. We are just waiting for his lil body to recover from all his events over the past 24 hrs. Oh another event that happened Thursday afternoon soon after I finished my Kangaroo session, he had his first eye exam. It's a pretty rough thing for the lil preemies and they typically feel tuckered out afterwards, so he had multiple things that were working against him the just pushed him over the edge to be reintubated early Friday morning. I guess it's just going to take him a few days to get his strength back. I'm praying that he's just really tired and that he doesn't have some other infection brewing.
Please keep praying for RJ's continued strength and healing. He's our lil fighter and we love him sooooo much. We can't wait to bring him home.
So our lil man looks nice and peaceful this afternoon. Unfortunately he's still too tuckered out for me to kangaroo care. I'm pretty bummed about that. His lil heart is pumping in the 200's right now and they are trying to figure out why. He didn't have an albuterol tx this morning, which causes his HR to elevated. He's not agitated and his Hct from yesterday was 32 which doesn't require any transfusion typically at this age. The nurse practitioner came and saw him and is aware of his HR. I'm also bummed b/c the night nurse didn't relay the message that we were going to be here at noon for RJ's cares. So, she had finished changing his diaper and cleaning his face right before we arrived. He dropped his heart rate when turned on his back to complete his cares as well. That's not his normal reaction. He usually does great on his back at least for awhile.
So far his respiratory and bacterial cultures have come back negative. They are still waiting for the viral cultures for RSV and Flu to come back. They took cultures of his urine b/c he's now at the age for possible UTI as well. I'm not sure about the results of that yet. He's getting a couple antibiotics as prophylactic: Ampicillian and Gentamicin. His urine output has picked up and he's already had 2 poopy diapers since our nurse came on this morning, so that's all encouraging. We are just waiting for his lil body to recover from all his events over the past 24 hrs. Oh another event that happened Thursday afternoon soon after I finished my Kangaroo session, he had his first eye exam. It's a pretty rough thing for the lil preemies and they typically feel tuckered out afterwards, so he had multiple things that were working against him the just pushed him over the edge to be reintubated early Friday morning. I guess it's just going to take him a few days to get his strength back. I'm praying that he's just really tired and that he doesn't have some other infection brewing.
Please keep praying for RJ's continued strength and healing. He's our lil fighter and we love him sooooo much. We can't wait to bring him home.
Friday, February 22, 2013
February 22, 2013 Take 2:
I wanted to thank everyone for the extra prayers today. I got excellent results from my CT earlier this morning. The blood clot is gone, or what they thought was a blood clot is gone. There is no need to worry that it broke off either. The dissection still is there, but my only treatment is to take one 325mg Aspirin daily for a few months. I have follow up w/ a Stroke doctor in the next couple weeks, because they are more qualified in the vessel department. It was a huge relief knowing that I didn't have to be admitted to the hospital again and started on stronger meds to dissolve the clot. Plus now I can continue pumping milk for RJ 48 hrs after my image today since I was also given IV contrast. That contrast gave the most awful feelings all at once: total body hot flash, metallic taste in mouth, and feel like I was peeing on myself. I'm just so thankful for the awesome results. Now I can focus on RJ and helping him get better.
We got to see RJ intermittently today due to my CT and all. He was pretty tuckered out this morning, but looked peaceful. His sats were good as well. This afternoon we could tell he was feeling a lil better b/c he fluttered his eyes open and gave us some smiles. :) He had some good pee and poopy diapers which was encouraging. So far none of his cultures have grown anything, so that's a blessing. They ended up having to take another chest x-ray later this afternoon after we left because he dropped his sats and they weren't coming up. The chest x-ray showed both the feeding tube and ET tube (for intubation) were in the correct place. They gave him an albuterol treatment and it seemed to open his lil airways.
Robert's parents got into town this afternoon and we are all currently waiting to head up and see RJ. I called this evening for an update and to let them know we were coming in to do his cares at 8pm. We feel very blessed and grateful for the positive results of my exam and that RJ is overall doing better. I pray that he can get some good sleep tonight and be a lil more perky tomorrow for Sabbath. I didn't get to hold him today w/ my limited time in the NICU today, so I'm hoping tomorrow might be better. I hope everyone reading this has a Happy Sabbath!!
I wanted to thank everyone for the extra prayers today. I got excellent results from my CT earlier this morning. The blood clot is gone, or what they thought was a blood clot is gone. There is no need to worry that it broke off either. The dissection still is there, but my only treatment is to take one 325mg Aspirin daily for a few months. I have follow up w/ a Stroke doctor in the next couple weeks, because they are more qualified in the vessel department. It was a huge relief knowing that I didn't have to be admitted to the hospital again and started on stronger meds to dissolve the clot. Plus now I can continue pumping milk for RJ 48 hrs after my image today since I was also given IV contrast. That contrast gave the most awful feelings all at once: total body hot flash, metallic taste in mouth, and feel like I was peeing on myself. I'm just so thankful for the awesome results. Now I can focus on RJ and helping him get better.
We got to see RJ intermittently today due to my CT and all. He was pretty tuckered out this morning, but looked peaceful. His sats were good as well. This afternoon we could tell he was feeling a lil better b/c he fluttered his eyes open and gave us some smiles. :) He had some good pee and poopy diapers which was encouraging. So far none of his cultures have grown anything, so that's a blessing. They ended up having to take another chest x-ray later this afternoon after we left because he dropped his sats and they weren't coming up. The chest x-ray showed both the feeding tube and ET tube (for intubation) were in the correct place. They gave him an albuterol treatment and it seemed to open his lil airways.
February 22, 2013
A whole lot has happened in the past 24 hrs for our lil family both for me medically, emotionally, and mentally; for RJ medically; and for Robert mentally and emotionally. While in the hospital I had had a Neuro consult for some neck pain issues, but my neuro exam was normal. I followed up with the same Neurologist a couple weeks ago in the office and basically the same neuro exam was normal. When she put the tuning fork to my head there was slight decrease of hearing in the right ear, so she ordered a MRI/MRA of the head. We thought it was a lil over keel, but were up for doing what was necessary. I had those images taken yesterday morning, which by the way is the loudest thing ever!!!! I feel so sorry for any patient who has to get one of those images completed now. Anyways, around 3pm my Neurologist called as I was leaving the NICU in a separate car than Robert. I was already emotional from leaving RJ and Robert was being the supportive husband and was staying on the phone via speaker till I got home. I had to quickly switch over phone calls for the "859" number on my screen. My Neurologist had me pull over and let me know that they had found a dissection of a vessel in the right side of the head and a blood clot. All this stems from my preeclampsia/pregnancy. She wanted me to come in for more imaging, CT angio of the head/neck. I am having that image taken this morning at 11am. There is definitely treatment for this, so I don't want anyone to be freaking out, we just need lots of prayers that I can be treated at home on oral meds versus the hospital on IV, then oral meds. I can't be sick right now, I need to be there for our lil boy.
Yesterday RJ and I did not have a good kangaroo time. He was fussy and very agitated. He just couldn't seem to get comfortable. They were having to go up on his oxygen as well. There were times when he seemed to find a good spot and would sleep a lil. I still enjoyed having him close to my body. Near the end of our session I heard some burps which turns out was him spitting up milk. His feeding tube had become partly dislodged. Baby's are really good at protecting their airway and clinically he was letting us know something was wrong. His heart rate had dropped a few times alerting the RN to put RJ back in bed to see what was happening. They later got a chest X-ray and labs. Respiratory wise they were a lil worse. We went back to see RJ for his 8pm cares can he was fussy and agitated again. They had to continue going up on his oxygen. We helped settle him down and thought all was going to be fine till morning. Then around 3am we got a call from the NICCU saying he had to be intubated again and repeat labs and chest X-ray were much improved. He didn't even fight having the tube replaced. The PA stated RJ was resting peacefully and doing much better. To cover all their basis they are doing a septic work up, drawing labs, starting prophylactic antibiotics. Medically it was the right thing to do. He had been fighting for so long and his lil lungs just needed the extra support. The docs and nurses were surprised he extubated so quickly after delivery and was able to stay off it for this long. It feels like a setback in the progress we were making, but we just have to remember his lungs were still really sick. So, for the next 30-45 min I was pretty emotional. Finally both Robert and I were able to fall back asleep.
I'm not sure how our time will go today, so just wanted to update everyone and ask for EXTRA prayers... I really need to be there for RJ and for my husband. It's a huge load he has to carry watching his family and not having any control. Please pray for healing, strength, and peace.
A whole lot has happened in the past 24 hrs for our lil family both for me medically, emotionally, and mentally; for RJ medically; and for Robert mentally and emotionally. While in the hospital I had had a Neuro consult for some neck pain issues, but my neuro exam was normal. I followed up with the same Neurologist a couple weeks ago in the office and basically the same neuro exam was normal. When she put the tuning fork to my head there was slight decrease of hearing in the right ear, so she ordered a MRI/MRA of the head. We thought it was a lil over keel, but were up for doing what was necessary. I had those images taken yesterday morning, which by the way is the loudest thing ever!!!! I feel so sorry for any patient who has to get one of those images completed now. Anyways, around 3pm my Neurologist called as I was leaving the NICU in a separate car than Robert. I was already emotional from leaving RJ and Robert was being the supportive husband and was staying on the phone via speaker till I got home. I had to quickly switch over phone calls for the "859" number on my screen. My Neurologist had me pull over and let me know that they had found a dissection of a vessel in the right side of the head and a blood clot. All this stems from my preeclampsia/pregnancy. She wanted me to come in for more imaging, CT angio of the head/neck. I am having that image taken this morning at 11am. There is definitely treatment for this, so I don't want anyone to be freaking out, we just need lots of prayers that I can be treated at home on oral meds versus the hospital on IV, then oral meds. I can't be sick right now, I need to be there for our lil boy.
Yesterday RJ and I did not have a good kangaroo time. He was fussy and very agitated. He just couldn't seem to get comfortable. They were having to go up on his oxygen as well. There were times when he seemed to find a good spot and would sleep a lil. I still enjoyed having him close to my body. Near the end of our session I heard some burps which turns out was him spitting up milk. His feeding tube had become partly dislodged. Baby's are really good at protecting their airway and clinically he was letting us know something was wrong. His heart rate had dropped a few times alerting the RN to put RJ back in bed to see what was happening. They later got a chest X-ray and labs. Respiratory wise they were a lil worse. We went back to see RJ for his 8pm cares can he was fussy and agitated again. They had to continue going up on his oxygen. We helped settle him down and thought all was going to be fine till morning. Then around 3am we got a call from the NICCU saying he had to be intubated again and repeat labs and chest X-ray were much improved. He didn't even fight having the tube replaced. The PA stated RJ was resting peacefully and doing much better. To cover all their basis they are doing a septic work up, drawing labs, starting prophylactic antibiotics. Medically it was the right thing to do. He had been fighting for so long and his lil lungs just needed the extra support. The docs and nurses were surprised he extubated so quickly after delivery and was able to stay off it for this long. It feels like a setback in the progress we were making, but we just have to remember his lungs were still really sick. So, for the next 30-45 min I was pretty emotional. Finally both Robert and I were able to fall back asleep.
I'm not sure how our time will go today, so just wanted to update everyone and ask for EXTRA prayers... I really need to be there for RJ and for my husband. It's a huge load he has to carry watching his family and not having any control. Please pray for healing, strength, and peace.
Wednesday, February 20, 2013
February 20, 2013
Today's schedule has been all over the place and it threw me off with my normal blogging time. There was a woman delivering via c-section downstairs and they were gonna need to bring the baby to our Nursery 5 right during the time when I hold RJ. Anyways, here I am now blogging quickly before heading to bed. Tomorrow is a crazy schedule as well, so not sure when I'll get a chance to blog. Today there wasn't much to report on the rounding. RJ lost a lil and was 1130grams. Sorry, I didn't have a chance to convert it to lbs and oz. He had 2 real big stools, no change on NIPPV settings, able to wean FiO2 into the 30's overnight. All great news!! Last night Robert and I went back for RJ's 8 o'clock cares and bath time!! Bath time comes every 3 days and happens on night shift. RJ doesn't seem to be the biggest fan and cries a lot. The crying is really good for his lungs and gets them really open. I held him right after to help warm him up and he was sating 100%!!! It was fantastic!! I asked today about giving RJ daily bathes, but the team stated not until he gets older b/c right now it's hard for him to hold his temp. Plus it's an extra stressor. They did suggest learning infant massage that is a great way for stimulation and a great mommy/baby bonding. I didn't get a chance to talk with anyone who is trained in that today. Here are a couple pics from our terrific snuggling time today!! He did great and we were together over 2 hrs. If it wasn't the shift change time, we could have kept snuggling for hours. :) Thanks again family and friends for all your love and support!!
Today's schedule has been all over the place and it threw me off with my normal blogging time. There was a woman delivering via c-section downstairs and they were gonna need to bring the baby to our Nursery 5 right during the time when I hold RJ. Anyways, here I am now blogging quickly before heading to bed. Tomorrow is a crazy schedule as well, so not sure when I'll get a chance to blog. Today there wasn't much to report on the rounding. RJ lost a lil and was 1130grams. Sorry, I didn't have a chance to convert it to lbs and oz. He had 2 real big stools, no change on NIPPV settings, able to wean FiO2 into the 30's overnight. All great news!! Last night Robert and I went back for RJ's 8 o'clock cares and bath time!! Bath time comes every 3 days and happens on night shift. RJ doesn't seem to be the biggest fan and cries a lot. The crying is really good for his lungs and gets them really open. I held him right after to help warm him up and he was sating 100%!!! It was fantastic!! I asked today about giving RJ daily bathes, but the team stated not until he gets older b/c right now it's hard for him to hold his temp. Plus it's an extra stressor. They did suggest learning infant massage that is a great way for stimulation and a great mommy/baby bonding. I didn't get a chance to talk with anyone who is trained in that today. Here are a couple pics from our terrific snuggling time today!! He did great and we were together over 2 hrs. If it wasn't the shift change time, we could have kept snuggling for hours. :) Thanks again family and friends for all your love and support!!
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| Robert made the comment yesterday afternoon about RJ being bilingual. When we came back for bath time one of the RN's had done this!! |
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| Kangaroo Time w/ Mommy!! |
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| I feel complete and satisfied when he's snuggled next to me :) |
Tuesday, February 19, 2013
February 19, 2013
We got up a lil earlier this morning to run an errand before work/RJ time. So, when I was holding him this morning I was drifting off to sleep. :) RJ was a lil fussy when the nurse handed him to me. He quickly found his place on my chest and the binki sealed the deal. He fell asleep and we had a great snuggle time. He has such soft hair that I nuzzle w/ my chin. It puts a smile on my face. :)
I was dozing in and out when the team came to round. My eyes were closed and the next moment, everyone was there. :) Not much to report today. His weight is 2 lb 9 oz, increased feeds to 7ml/hr since he grew, and chest xray this morning looked a lil better. The nurse practioner came back when Robert returned from lecture and reupdated him and asked if we had any questions. She was reassuring us that RJ is really doing great. Average baby's his adjusted gestational age of 30 wks, would typically still be intubated. He's been on the new NIPPV for a couple weeks now and it's much less damaging to the lungs. He's going to have lung issues for quite sometime, but good news is that little one's lungs regenerate up until they are 8 yrs old!! RJ is going to have a whole new set of lungs regrown by then!! His lil cry sounds pitiful at the moment, but it's reassuring as well. He's trying to cry, but I believe the NIPPV pushes so much air down his throat that he can't fully cry.
Right now he's sleeping peacefully with his head turned towards me on his belly. Thanks for all the love and support from our Facebook fam and friends!!
We got up a lil earlier this morning to run an errand before work/RJ time. So, when I was holding him this morning I was drifting off to sleep. :) RJ was a lil fussy when the nurse handed him to me. He quickly found his place on my chest and the binki sealed the deal. He fell asleep and we had a great snuggle time. He has such soft hair that I nuzzle w/ my chin. It puts a smile on my face. :)
I was dozing in and out when the team came to round. My eyes were closed and the next moment, everyone was there. :) Not much to report today. His weight is 2 lb 9 oz, increased feeds to 7ml/hr since he grew, and chest xray this morning looked a lil better. The nurse practioner came back when Robert returned from lecture and reupdated him and asked if we had any questions. She was reassuring us that RJ is really doing great. Average baby's his adjusted gestational age of 30 wks, would typically still be intubated. He's been on the new NIPPV for a couple weeks now and it's much less damaging to the lungs. He's going to have lung issues for quite sometime, but good news is that little one's lungs regenerate up until they are 8 yrs old!! RJ is going to have a whole new set of lungs regrown by then!! His lil cry sounds pitiful at the moment, but it's reassuring as well. He's trying to cry, but I believe the NIPPV pushes so much air down his throat that he can't fully cry.
Right now he's sleeping peacefully with his head turned towards me on his belly. Thanks for all the love and support from our Facebook fam and friends!!
Monday, February 18, 2013
February 18, 2013:
The attending/nurse practionar team rounded much later this morning. I ended up getting RJ out to Kangaroo care and Robert left and came back from lecture before they even rounded. :) They did a head ultrasound today for the 1 month check and it was negative for any head bleeds. His blood gas came back fine. His chest xray was still hazy and they decided to increase his NIPPV pressure setting by one point. He still has great saturation and doesn't seem to be feeling worse respiratory wise. His WBC was 11.2, HCT was 36.1, so no need for blood today. They added an inhaled steroid to his regimen yesterday afternoon at some point. He had a HUGE poopy diaper at his noon care time. He was quite fussy when I was cleaning his face and changing his diaper. I tried to bundle him up after dressing him. He's been pretty figity since then. I tried calming him down and giving him his binki before leaving for lunch. I came back and still had his arms/hands squirming. I cupped his head and gave him the binki again and he seemed to calm down. He's just so precious and I just want to take him home!!! I could totally sneak him out in my jacket and no one could tell. :) It's so hard to be patient... I'm doing my bestest.
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| My precious lil monkey |
Sunday, February 17, 2013
February 17, 2013 Take 2:
Just got a chance to upload some of the pics from today. RJ got another fun snuggle session with daddy. I was working on typing up my journal from my hospital stay and leading up to and right after RJ's delivery. Some of the moments seem so vivid and like it could have just happened. I'm so thankful for the health I enjoy right now. I'm truly blessed.
Just got a chance to upload some of the pics from today. RJ got another fun snuggle session with daddy. I was working on typing up my journal from my hospital stay and leading up to and right after RJ's delivery. Some of the moments seem so vivid and like it could have just happened. I'm so thankful for the health I enjoy right now. I'm truly blessed.
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| Snuggle up |
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| Happy Daddy |
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| Our lil boy is growing up!! Big 1 month milestone!! |
February 17, 2013:
RJ is getting bigger and has such a good working bladder. He's about outgrown his current diapers. He leaked out on his burrito wrapping blanket at the noon cares. :) I got his cares done and now daddy is holding RJ. They are all snuggled together. It's funny how RJ holds onto his chest hair trying to figure out whats the funny feeling stuff on daddy's chest that mommy doesn't have. :)
We came later today so we could sleep in and get some chores done around the house. Funny how you still have to be responsible at home even when you have a child at the hospital. Oh bother... Not must happened today regarding changes to his care. He's at his full feeds of 6.5ml/hr and iron and multivitamin have been being given. He will get the scheduled probiotics and caffeine unitl about 34 wks, which is only a month away!! Wowsers... It's time for the vaccines to start. His Hepatitis B vaccine is due now that he's 1 month old.
Today is RJ's official birthday according to the dates!! He has made soooo much progress and we give all the praise to Jesus. He has heard the many prayers of our family and friends and has shown us all what a fighter even little people can be. He's a true answer to prayer... Our lil miracle baby for sure. Thanks again for each individual person's thougths and prayers. It truly has made a difference.
RJ is getting bigger and has such a good working bladder. He's about outgrown his current diapers. He leaked out on his burrito wrapping blanket at the noon cares. :) I got his cares done and now daddy is holding RJ. They are all snuggled together. It's funny how RJ holds onto his chest hair trying to figure out whats the funny feeling stuff on daddy's chest that mommy doesn't have. :)
We came later today so we could sleep in and get some chores done around the house. Funny how you still have to be responsible at home even when you have a child at the hospital. Oh bother... Not must happened today regarding changes to his care. He's at his full feeds of 6.5ml/hr and iron and multivitamin have been being given. He will get the scheduled probiotics and caffeine unitl about 34 wks, which is only a month away!! Wowsers... It's time for the vaccines to start. His Hepatitis B vaccine is due now that he's 1 month old.
Today is RJ's official birthday according to the dates!! He has made soooo much progress and we give all the praise to Jesus. He has heard the many prayers of our family and friends and has shown us all what a fighter even little people can be. He's a true answer to prayer... Our lil miracle baby for sure. Thanks again for each individual person's thougths and prayers. It truly has made a difference.
Saturday, February 16, 2013
February 16, 2013 Take 2:
So we ended up going back this evening to do RJ's 8pm cares and bath. He had an extremely poopy/pee diaper, so we are all good in that department. Then I got to weigh him and he's 2lb 8 oz!! He gained back what he lost the other night and then some!! Next it was time for his bath. Once again I had way more fun giving it than RJ did receiving it. He is starting to get his voice b/c we heard some lil cries. His vocal chords are starting to produce sound now!! Maybe I shouldn't be too happy. Before ya know it, I might want him to be silent again. :) In addition to seeing him squirm all over the place today, he had some good yawns, sneezes, and burps to add to his list today. Robert and I took over 100 photos today, so I have a few more to share tonight. :) I hope you all enjoy!!
So we ended up going back this evening to do RJ's 8pm cares and bath. He had an extremely poopy/pee diaper, so we are all good in that department. Then I got to weigh him and he's 2lb 8 oz!! He gained back what he lost the other night and then some!! Next it was time for his bath. Once again I had way more fun giving it than RJ did receiving it. He is starting to get his voice b/c we heard some lil cries. His vocal chords are starting to produce sound now!! Maybe I shouldn't be too happy. Before ya know it, I might want him to be silent again. :) In addition to seeing him squirm all over the place today, he had some good yawns, sneezes, and burps to add to his list today. Robert and I took over 100 photos today, so I have a few more to share tonight. :) I hope you all enjoy!!
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| Kangaroo time w/ daddy- he was squirming like crazy!! |
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| Yawning real big right before the bath began |
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| Not a big fan of the bath |
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| Time to dry off!! |
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| Gotta get all hooked up to the monitors again |
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| Our lil burrito |
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| Look at those big handsome eyes |
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| I put him to sleep for the night |
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| Out of order, but right before he was wrapped like a burrito :) |
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| This was before the bath began... |
February 16, 2013:
The nurse practioner came by before we arried this morning to check on RJ and make a plan. RJ's nurse for the day stated there really isn't any changes. He's staying on the feeds at 6.5ml/hr, no changes to his NIPPV, they added iron, and just needs to feed and grow. His weight last night was 2 lb 6 oz. He lost a lil, but it's bc he lost some water weight. Now that he's off fluids, he should equal out to his true weight and his lungs should hopefully start looking better on xray as well. He needs time for the inflammation in his lungs to go down from his pneumonia. Right now daddy is holding RJ. They look adorable all snuggled together. At one point RJ was holding onto daddy's finger. It was truly precious.
There was an interruption to my writing because Trina, one of our special nurse practioners, came by to personally give us an update. We are just plugging along nicely today, enjoying our time with our lil monkey. There will be pics to follow later.
Friday, February 15, 2013
February 15, 2013:
Rounding Today:
Rounding Today:
No labs done
Keep feeds at 6.5ml/hr
Add multivitamin to his feedings
Plan to add iron to his feedings this weekend
Weight: 2.5 lbs!!
Weight: 2.5 lbs!!
Not much else!! Just feed and grow!!
Our lil man was all cute and swaddled like a lil burrito this morning. It was adorable. We have reached a plateau at the moment, which is a good thing. He just needs to feed and grow. I had some good skin to skin kangaroo time this morning. Robert was here at the start and finish. We got some pics with the 1 month Onesie sticker. Wowsers.... we've already been in the NICU 4 wks... Time slowly flys by. :) Robert got to put RJ back into his isolette again today. It was special. :) I got him all cleaned up, diaper changed, and then wrapped him up like a burrito again. The past few minutes I've been sitting by his bed. He opens his eyes off and on. I read him a Bible story and said a lil prayer with him. :) I'm just hanging out with him until daddy gets back from lecture. Hope everyone has a Happy Sabbath!! Will try posting pics later. :)
Thursday, February 14, 2013
February 14, 2014:
Rounding Today:
Rounding Today:
Weight 2 lb 7 oz
WBC: 12.5
Hct: 42
Feed: 6ml per hr increase tonight when abx and fluids stopped
Stop cefepime today!!
Remove PICC today!!
My keyboard is not working right, so this is going to be a quick post. RJ is doing fantastic. Not much to report. I helped bundle him up after doing his noon cares. He had a nice poopy diaper too :) When we came in this morning RJ had a cute lil onsie on and was all snuggly looking :). He looked even more like a lil baby :) Tomorrow we will bring him some clothes in to start wearing. He opened his eyes quite a bit when i held him this morning. It was precious. We are making progress! Oh, there was a cute valentines card on the bottom of his isolette this morning. It was sooo cute!
Wednesday, February 13, 2013
February 13, 2013:
Rounding Today
Up on feeds to 5.5 today, tomorrow 6.0
Consider increase fortification?- depends on daily weight
Weight: 2 lb 6 oz
Chest xray looked hazier than last, but no need to change plan of care
Cefepime and PICC stop tomorrow!!!
First thing when we arrived our nurse mentioned they were going to get a new baby in our nursery, which means parents have to step out till baby is settled. So, I immediately went to pump and then got set up to hold RJ. I held him for about 1.5 hrs before the new baby came. It just feels better and better holding him each day. :)
Our nurse looked at his card and saw he hadn't had a bath in awhile and he was getting stinky, so she let me give him a sponge bath at his noon cares!! He wasn't the happiest w/ getting wet and cleaned, but I was having a blast!! He tolerated it well and then I got to lotion him up. I got to reposition him and snuggle him in his bed. We got a fresh binki to help soothe him and watched as he slowly went to sleep. I caressed his cute lil head and helped hold the binki in place till he fell asleep. He was wide awake right after the bath and slowly let his eyes shut as sleep came over him. He looks like a lil sleeping angel now.
Something new and unpleasant happened today in the NICU in the nursery across from us. There was a flurry of doctors, respiratory techs, and nurses this morning around the bed and techs were coming and going w/ machines. It put the rounds behind. I could tell something not good was happening. I asked my nurse if the baby was going to make it and she wouldn't give me an answer of yes or no. I saw the L&D nurse bring up the mom and dad followed. I left for lunch and 45 min later when we came back there was family at the bedside and screens placed up. Eventually I asked the respiratory therapist checking RJ's settings, and she said they were withdrawing care. I could hear crying, which in turn caused the tears to well up in my eyes. I ended up going to pump and by the time I came back the nurses were cleaning things up. I feel so blessed right now with RJ's progress.
Why do some preemies live and others don't... Why is RJ still living and that baby isn't... I just have to treasure each moment that I have with our lil man. He is so precious. He's such a fighter.
I was connected with another mother who gave birth twin girls. We have been emailing back and forth. Today she shared a special poem with me. God says he won't give us more than we can handle. He knows the beginning from the end and knows that through the tough times he can bring sunshine. I don't know what others are going through right now, but I hope that RJ's saga might help strengthen someone else's faith, and maybe just be the catalyst to help them come closer to God. I don't want our pain to be in vain.
Today was an awesome day... We have a growing boy who's stable. We greatly appreciate your thoughts and prayers.
Tuesday, February 12, 2013
February 12, 2013:
Rounding Today:
Rounding Today:
Get rid of TPN- IV nutrition
Feeds: increase to 5ml/hr
Keep same NIPPV rates
His tachycardia yesterday probably due to Albuterol tx in the AM for his lungs. They held his night dose of caffeine and heart rate has come down. Currently it's in the high 160's-170's
Plan on getting chest X-ray, ABG's on Thursday when Cefepime will be complete and PICC pulled!!
Weight: 2 lb 5 oz
Our lil man is gaining weight!! He's filling out slowly but surely. Our snuggle time today was so precious. I was resting my chin/cheek against his head and he was moving his hand around. It found my mouth and I was kissing it. He's getting to know his mommy. :) During our kangaroo time I heard his first burp. Daddy is very proud of his champ!! We are happy his innerards are moving!!
Last night we were told RJ had a massive poop that messed up his bed. I'm so sorry the nurses had a mess to clean up but super excited our lil man is pooping well!! I think they ended up giving him a bath last night too.
I forgot to mention a couple days ago when I was giving RJ a kiss I accidently shocked him on his head. He jumped and his lil eyebrows furrowed all up. I felt bad and at the same time it was precious. :)
Today is a good day. I felt that I got a lil better sleep last night and don't feel so draggin right now. Ask me in a couple hrs again and I might say different. :) We will probably leave a lil earlier today so that we can get some errands done. Things pile up when you hang out at work/hospital for 6 hrs a day.
It is incredible to just sit here next to our lil one and stare at him. He's so perfect looking, yet so tiny. I'm amazed every day at how strong he is. His lil muscles are tough already. I can't believe he will already be a month old this Thursday!! Time is just flying by and going in slow motion all at the same time...
Hope you all have a terrific Tuesday. It's pumping time. :)
Monday, February 11, 2013
February 11, 2013
WBC 16
Hct: 41- no transfusions today
11 of day 14 cefepime; once complete PICC comes out
5 days since blood culture negative; stopping vanco today bc its 7 days total
Liver enzymes normal
Increase feeds to 4.5ml/hr
Plan to stop TPN today!!
Today has been a fantastic day for our lil man. I have to say I'm very impressed at his strength. At noon I did his cares after kangaroo care and got him all cleaned up. I positioned him on his belly with his head turned to his left and then Robert and I went to get lunch. When we came back about 45 min later he had picked up his own head and turned it over to the right and was sleeping soundly!! I had no idea his head strength was so strong!! I'm hoping I can tame this strenght as he gets older and that he won't exhaust me too much. :) We are so proud of him!! He is determined to get home, I can just tell.
He and I had fun with our kangaroo time this morning. It was nice and peaceful. He started getting super squirmy about 1.45hrs after we got him out. When Robert came to take me to lunch, I was still holding RJ. We have a super chill nurse today and she offered to have Robert put RJ back in his isolette! He was a lil nervous, but it was a special moment.
We are excited about the TPN stopping and how we are slowly marking things off his checklist. It will be exciting when all his tubes and lines are out. I axiously wait for that special day!! :)
I was talking with RJ's nurse today and she said that soon I'll be able to hold him 2 times a day! So, I'm planning on changing my schedule starting March when Robert starts his new rotation. I'll be driving myself to and from the hospital then. I'll be to the hospital for rounds in the morning and hold RJ and then come back on night shift to hold him again and tuck him into bed for the night. They tupically give baths on nights, so I'm hoping that I can start giving him baths as well!!
We are making progress and it's slowly feeling more real. This whole breast pumping thing still seems weird since I have no baby to attach every 3-4hrs, just plastic cups. :) I'm probably going to start bawling when I actually get to start trying to breast feed him for realsies. :)
Welp, I think that's about all for now. Thanks again for all the love and support.
Sunday, February 10, 2013
February 10, 2013
We just called to check on our lil man and he had a great night. When they rounded this morning the nurse said they decided to stop giving him the lipids for extra nutrition. They increased his feeds to 4ml/hr. If he tolerates his feeds over the next few days with the increase then they will be able to stop the TPN (extra nutrition through the PICC line). His vancomycin level that was drawn was normal, so the nurse gave that dose this morning. There wasn't a whole lot else that changed. We needed to get some things done here around the house before heading into see RJ today. Life must go on at home too. We were developing a very large amount of clothes on the floor, so laundry needed to be done. :) We hope to send some pics later today after seeing our lil man. We are hoping to get the nurses to let Robert hold RJ again this evening since he only gets to on the weekends. We ended up going to church yesterday since we weren't able to hold RJ in the morning while he was getting his blood. It was quite emotional for me. It was nice to have people come up to us with hugs and kind words. It just didn't feel right being there and not having our lil boy with us... One day soon we will be able to have him with us all the time. :) That will be a day for true celebration!!! Love to all!!
Saturday, February 9, 2013
February 9, 2013:
Rounding today:
WBC: 16
Hct: 34- needing to get blood again this morning (seems to be an every other day occurrence)
Food: increasing fortifiers for extra nutrition in milk today- keep rate of 3.5ml/hr
Blood cultures from the 7th still negative!!- so start 7 days of vanco from this date
Weight: 2 lb 4 oz
Stool: happend 3 times
CBC: draw only on Monday & Thursday versus daily
Happy Sabbath friends and family! Our lil man is pluggin away. He's sleeping peacefully right now all bundled up. Robert gets to stay the whole time we are up in the NICU today since it's the weekend and he's off. Since he has to get blood today, we probably won't be able to hold him with the timing of it all. It takes 3 hrs to get the blood and it's still not up here. I honestly wish they had ordered the blood on night shift and that it was already going it. It really messes with our timing of being here and when we have to leave. Okay, I'm venting a lil. I don't like to be told I can't hold my son!!! We have a different nurse today and everyone does things just a lil different. I wanted Robert to hold RJ today as well :( I'm hoping we will be able to hold him tomorrow. That's about all the juicy news for now. Thanks again for all your love and support!!
Friday, February 8, 2013
February 8, 2013:
Rounding today:
Rounding today:
WBC (white blood cells): 23
Hct (blood count): 40
CXR (chest xray): looked better- Dr. Ballard said looks best in awhile!
Oxygen requirements decreasing over last night
Weight: 2 lb 2 oz
Food: increase volume 3.5ml/hr
Cefepime: 8 of 14 days
Vanco level was low yesterday: increase frequency of dose to every 8 hrs instead of every 12 hrs
Once RJ starts breathing more on his own and doesn't need the extra breaths provided by the NIPPV (non-invasive positive pressure ventilation), then they will switch him to Bubble CPAP!! It's the next step to being on total room air
Dr. Ballard and team very happy at RJ's progress!! Not much change today.
Lil man is doing well on his progress. He was sleeping peacefully when we arrived this morning. He opened his eyes a lil when we said good morning. We gave him his binki and his sats went up. He needs me here continuously to hold that binki in the mouth! :) My alarm went off this morning at 5am for my pumping and I totally got confused. I thought it was my alarm to get up and shower, so I kept pressing snooze. I didn't realize what was happening until almost 6am!!
Thursday, February 7, 2013
February 7, 2013
Rounding today:
Rounding today:
WBC 23.9
2/5- one bottle grew ( Dr. Ballard thinks still contaminate)
Draw 2 bottles blood cultures today and if truly contaminate then will do total 7 days vanc
Keep 3cc/hr on feeds and add human fortifiers for extra nutrition
Goal is to have protein for growth- part of the fortifier powder added to my breast milk
Hct 33.9- will give blood today
Hold off on CXR today- probably repeat tomorrow
Lil RJ and I had a really good Kanagaroo care time this morning. I wanted to make sure I actually got to hold him since he was going to get blood and it goes in over 3 hrs. I requested to hold him first before it was started and thankfully his nurse was understanding. RJ's eyes were really open during the first part I was holding him. I was talking and singing to him while he looked at me. I was kissing his head and lil hand. He would wiggle his lil hand and brush my lips, since they were right down close to him. It was precious. He also got the hiccups at one point. I learned later that it's also a sign of "stress". It was probably from moving him and getting him settled in my "Kanagroo pouch". I got him to take his binki and he was sucking away on it. Robert got some cute pics we hope to post later.
His sats are doing better now that he's getting the blood as well. The blood started while Robert and I were at lunch. I drank my midday dose of caffenated soda for lunch and then promptly feel asleep while in the pumping room afterwards. Oh bother... We have to leave the NICU in about an hr for the "shift change" time. We are so proud of our lil man and his improvements today. He's looking cutier every day!!
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