April 30, 2013:
I'm currently sitting down in the living room holding our lil sleeping man. He keeps grunting and squirming, but is sleeping none the less. :) Yesterday was day 3 of no poop since Friday. We had our Pediatrician appt yesterday morning to check weight and discuss his pooping regime. He's just over 6 lb now!! Glad to know he's gaining weight and growing. On the constipation front, our doc mentioned using dark Karo syrup. She got in touch w/ our nutritionist from the NICU and called me last evening to add 1.5 tsp of the dark Karo syrup to each of his bottles. I just gave him his 3rd dose here at noon and still no poop. :( I'm supposed to add it to every bottle until he goes. It's action is to pull water from the body into the intestines and help to soften the poop to then be pushed out. He must be really backed up. :( Needless to say last night was a rough one since he gets more fussy and doesn't want to take his bottles and spits up when he's constipated. It's amazing how we constantly seem to be doing a load of laundry now. :) Oh mercy...
The last of our company left yesterday afternoon, which was sad. :( It's always nice to have the extra help. Now we must get the house cleaned up and back in order. Thankfully I have Robert here this week to help me take care of RJ so I can get things done.
Today has been our lazy day. Between RJ and myself, we have appointments every day this week except today. Whew.... It was super tricky trying to get RJ, myself, and everyone out the door yesterday morning to be at the clinic by 8:15am for my 2nd opinion appt w/ the vascular surgeron. He pretty much confirmed what we've been hearing from the other docs we've talked to. If at my repeat CTA the pseudoaneruysm is bigger, treatment is necessary. Since the pseudoaneurysm is small, he was suggesting that a coil might not work and could potentially when deployed go through the pseudoaneurysm and into the brain. So, a closed stent seems to be the best option. A mesh stent could potentially allow blood flow through the holes into the pseudoaneurysm which could then cause it to get bigger and rupture. Surgical repair is not best b/c the pseudoaneurysm is so high up and near the base of my brain. They would have to dissect through a lot of muscles and move my jaw to even get to the area. I'm hoping that on repeat imaging it's smaller and we can just monitor it w/ repeat imaging. The vascular surgeron also ordered a duplex study to be done at the same time as the CTA for comparison. If the studies look comparable, then for the future I could just get the duplex, which is a type of ultrasound, and not have to get exposed to repated radiation and contrast. I asked for the studies to be done during the first week of June while my sister is here to help take care of RJ. Dealing w/ my health is sure more tricky now that we have a lil boy around. :)
We still wouldn't trade our lil miracle baby for anything. He's so precious. We can't wait to show him off to everyone!! Thanks again for your continued prayers, support, and love. We woudn't be all snuggled up today on the couch without them. :)
Tuesday, April 30, 2013
Friday, April 26, 2013
April 26, 2013:
Our lil son RJ is loving his new home life. We've had our ups and downs with sleeping at night. He's such a squirmer and noise maker. I'm always checking on him to make sure he hasn't spit up. He did that the other night a couple times. Yesterday while I was feeding him lunch he had a big spit up which required him and I to change clothes. He's been more fussy the past couple days. Yesterday was his 4th day without pooping and we new that was a problem. I called the Pediatricians office and was on hold for over 10 min, so finally left a message. It said they would call back within the hour, but that didn't happen, so I called back again and got a hold of a nurse. She said since he's a preemie they can't follow the normal protocol, so she would have to call for his chart and get back w/ me in an hr or so, once again... So I waited and finally got a call back saying we could purchase glycerin chips, suppositories, over the counter. So, I had Robert pick some up on his way home from work. Mom and I tried massaging his belly and I even gave him a warm bath. The Thursday night suppository didn't produce much. I was waiting for a blow out all night long. So this morning I gave him another dose and thankgoodness we had success!!! Now he better poop a lil more reguarly. :) We see the Pediatritican again on Monday, so we will discuss the best way to keep our lil guy regular. Since he was born a preemie they need the extra calories and protein from supplements, that I add to my breast milk. Plus he has to get multi-vitamin and iron daily. Unfortunatly iron is constipating, so it's a double edged sword. Otherwise the lil guy is doing great. He sleeps, eats, and pees a lot. Soon I hope he poops a lot too. :)
We have some family coming in this weekend, so that will be fun to show him off. I've been lucky to have my mom here all week helping me move RJ and his may cords around, oxygen and apnea monitor. Plus she's cleaned the house and helped cook lots of food to freeze. We should be set for a few weeks now. :) It will be wonderful to spend Sabbath in the conforts of our own home with our lil man and not have to commute to the hospital. I love not having someone tell me, "We need to put your son back." We can hold him whenever we want now. I try to keep him on a schedule like the hospital did. I feed him and change his diaper at night, but then swaddle him and place him back into his bed. I want him to get used to it and not get too spoiled :). I do have to confess that after the 6am feed, diaper change, and pump, I've been holding him on my chest to snuggle and we both take a lil longer nap. It's absolutly wonderful. :)
Thanks again for all the love, support, and prayers. He's made such magnificent progress. He truely is a miracle baby. Please help us continue praying that he gets stronger every day and gets bigger. Hope you all have a wonderful Happy Sabbath!!
Our lil son RJ is loving his new home life. We've had our ups and downs with sleeping at night. He's such a squirmer and noise maker. I'm always checking on him to make sure he hasn't spit up. He did that the other night a couple times. Yesterday while I was feeding him lunch he had a big spit up which required him and I to change clothes. He's been more fussy the past couple days. Yesterday was his 4th day without pooping and we new that was a problem. I called the Pediatricians office and was on hold for over 10 min, so finally left a message. It said they would call back within the hour, but that didn't happen, so I called back again and got a hold of a nurse. She said since he's a preemie they can't follow the normal protocol, so she would have to call for his chart and get back w/ me in an hr or so, once again... So I waited and finally got a call back saying we could purchase glycerin chips, suppositories, over the counter. So, I had Robert pick some up on his way home from work. Mom and I tried massaging his belly and I even gave him a warm bath. The Thursday night suppository didn't produce much. I was waiting for a blow out all night long. So this morning I gave him another dose and thankgoodness we had success!!! Now he better poop a lil more reguarly. :) We see the Pediatritican again on Monday, so we will discuss the best way to keep our lil guy regular. Since he was born a preemie they need the extra calories and protein from supplements, that I add to my breast milk. Plus he has to get multi-vitamin and iron daily. Unfortunatly iron is constipating, so it's a double edged sword. Otherwise the lil guy is doing great. He sleeps, eats, and pees a lot. Soon I hope he poops a lot too. :)
We have some family coming in this weekend, so that will be fun to show him off. I've been lucky to have my mom here all week helping me move RJ and his may cords around, oxygen and apnea monitor. Plus she's cleaned the house and helped cook lots of food to freeze. We should be set for a few weeks now. :) It will be wonderful to spend Sabbath in the conforts of our own home with our lil man and not have to commute to the hospital. I love not having someone tell me, "We need to put your son back." We can hold him whenever we want now. I try to keep him on a schedule like the hospital did. I feed him and change his diaper at night, but then swaddle him and place him back into his bed. I want him to get used to it and not get too spoiled :). I do have to confess that after the 6am feed, diaper change, and pump, I've been holding him on my chest to snuggle and we both take a lil longer nap. It's absolutly wonderful. :)
Thanks again for all the love, support, and prayers. He's made such magnificent progress. He truely is a miracle baby. Please help us continue praying that he gets stronger every day and gets bigger. Hope you all have a wonderful Happy Sabbath!!
Tuesday, April 23, 2013
April 23, 2013 Take 2:
Today was RJ's first Pediatrician appt. Having a preemie you get much quicker service. They don't want him out in the general waiting room with all the sick kids. His doctor gave him a glowing report. On the scale in the office he weighs 5 lb 11.5 oz. We will go back again next Monday and will get another weight. That will give us a more accurate idea if the weight is right or not, since they use different scales in the hospital. Oh I forgot to mention that RJ passed his hearing test while in the NICU. He actually passed it really quick which was awesome!! Sometimes, the nurses said, it takes quite awhile for the babies to pass and they have to take it multiple times. Our lil guy is a trooper for sure!!
It was quite the task to get our lil man ready for the doctors and then get into the office w/ all his extra equipment. :) Thankfully I had help from my mother. :) Welp, my eyes are not going to stay open much longer. It's just so wonderful not having to drive into the hospital every day anymore. Home feels sooo wonderful. :)
Thank you so much for all the prayers, love, and support!!! Keep them up!!! We want RJ to grow stronger and be able to get off the oxygen, apnea monitor, and get rid of the NG tube. One last thought. I can't believe that tomorrow is RJ's actual due date. Crazy how time has it's own agenda.
Today was RJ's first Pediatrician appt. Having a preemie you get much quicker service. They don't want him out in the general waiting room with all the sick kids. His doctor gave him a glowing report. On the scale in the office he weighs 5 lb 11.5 oz. We will go back again next Monday and will get another weight. That will give us a more accurate idea if the weight is right or not, since they use different scales in the hospital. Oh I forgot to mention that RJ passed his hearing test while in the NICU. He actually passed it really quick which was awesome!! Sometimes, the nurses said, it takes quite awhile for the babies to pass and they have to take it multiple times. Our lil guy is a trooper for sure!!
It was quite the task to get our lil man ready for the doctors and then get into the office w/ all his extra equipment. :) Thankfully I had help from my mother. :) Welp, my eyes are not going to stay open much longer. It's just so wonderful not having to drive into the hospital every day anymore. Home feels sooo wonderful. :)
Thank you so much for all the prayers, love, and support!!! Keep them up!!! We want RJ to grow stronger and be able to get off the oxygen, apnea monitor, and get rid of the NG tube. One last thought. I can't believe that tomorrow is RJ's actual due date. Crazy how time has it's own agenda.
April 23, 2013:
As you all might have heard by now from word of mouth or FaceBook, RJ is home!!! The preparation at the hospital started last week. There were a couple videos we each had to watch, we had to be trained on the Apnea monitor (monitors RJ's heart rate and breathing). It will alarm if his heart rate goes below 80 or above 240 and if he holds his breath and doesn't breathe for more than 20 sec. There is no sleeping through the alarms for me!! Good thing I'm a light sleeper. We were trained on using his oxygen tanks as well. Thank goodness they reduced the amount of meds he was taking down to Iron and Multivitamin. The nurses reviewed drawing up those 2 in separate syringes and giving them to RJ either mixed up in a lil milk or push down his NT tube. Yes, I was trained how to insert a baby 5 french NG tube down RJ's lil nostril. He wasn't taking all his bottles before leaving the NICU step down unit called Neo, so I've been having to give him some of his feedings down his tube. Friday evening while I was getting some last minute groceries, I got a phone call from the NICU. The charge nurse was giving us a courtesy call saying they needed to move RJ down to Neo since he was the most stable baby in the NICU to make room for some other sick ones. Yes, RJ was the healthiest of the selection of babies!!! I was nervous about him being moved and trying to get used to a new environment knowing that we would probably be discharged in a couple days. I had gotten used to our place in Nursery 5.
At rounds on Friday there was talk of either being discharged Sunday or Monday. The Attending for Sunday tended to be bold. She's the one who said RJ was big enough to come out of his isolette box and into a big boy bed quicker than we were expecting. So, the team was getting everything ready in anticipation of possibly discharging us Sunday. All our follow-up appointments were made except one, I spoke w/ the nutritionist about a home feeding plan, and we were trained on the Apnea monitor/oxygen tanks.
Friday RJ and I had some good snuggle time even though it was broken up by some training. Robert left around noon to go home to pack for his 10 yr high school reunion at SVA, so RJ and I hung out. :) My mom and her husband came in Friday night and then we all spent some time w/ RJ on Sabbath in his new room down in Neo. It was much quieter down there. Alarms weren't going off like crazy and there wasn't a lot of conversations or extra noises like up in the NICU. It was rather relaxing. We had a corner spot by the nurses computers.
Saturday night I was nervous b/c there was the possibility of going home Sunday and I wanted to be ready. I ended up having a very hard time falling asleep and it wasn't until after 11:30pm before I finally fell asleep. I got up early Sunday morning to take a shower and blow dry my hair. I wanted to look extra nice in anticipation of taking pictures. I even brought a shirt to change into for Robert and I that coordinated w/ RJ's going home outfit. We packed my mom's car w/ all the necessities for discharge/going home. Robert got on the road early from Virginia to quickly travel back 6hrs. It was a nerve racking morning until rounds took place. Our nurse practitioner for the day came to examine RJ earlier and did her final assessment in anticipation that the Attending would agree to send us home!! Sure enough, around 11am we got the official word, WE ARE GOING HOME WITH OUR LIL BOY!!!! I texted Robert and he was fighting back the tears as he drove. It was a whirlwind for the next multiple hrs as discharge teaching was done and we got everything ready. Robert arrived around 2:30pm and helped take RJ's belongings, including 3 bins full of my frozen milk. :) My mom went ahead and took that home, while Robert and I had a special ride w/ our lil son for the first time. We walked out of the hospital at 4:07pm exactly. Both Robert and I looked at our phones. :) We found a random stranger to take pictures of us as we were walking out of the hospital and getting into the car. It was a very surreal moment.... It's still hard to believe.
RJ seems to be lovin being here at home and all the attention he is getting. We have a lil co-sleeper sitting next to me in our bed so he can sleep right with us. He's such a grunter and wiggler. That's what he does all night. I sure hope he can gain weight w/ all the exercise he does. He makes the funniest lil noises. :) I thought I was tired getting up in the middle of the night to pump. It didn't fully prepare me for q3hr feedings, diaper changing, and clean up that takes around an hr each time. Oh and still trying to pump. Oh mercy... sleep where are you??? It's still so hard to believe that he's home and we actually have a lil baby boy. :) We are soooo blessed....
Last night we gave RJ his first bath at home in the tub. We registered for a bath chair that has a mesh fabric he sits on and can feel the nice warm water. He really seemed to be enjoying himself. It was quite adorable. Oh I have to mention that last night I was getting ready for bed and took a peak at Robert and RJ. Robert was in a deep sleep and RJ was snuggled on his chest fast asleep. It was a precious picture. Wish I had actually taken a picture. :)
As you all might have heard by now from word of mouth or FaceBook, RJ is home!!! The preparation at the hospital started last week. There were a couple videos we each had to watch, we had to be trained on the Apnea monitor (monitors RJ's heart rate and breathing). It will alarm if his heart rate goes below 80 or above 240 and if he holds his breath and doesn't breathe for more than 20 sec. There is no sleeping through the alarms for me!! Good thing I'm a light sleeper. We were trained on using his oxygen tanks as well. Thank goodness they reduced the amount of meds he was taking down to Iron and Multivitamin. The nurses reviewed drawing up those 2 in separate syringes and giving them to RJ either mixed up in a lil milk or push down his NT tube. Yes, I was trained how to insert a baby 5 french NG tube down RJ's lil nostril. He wasn't taking all his bottles before leaving the NICU step down unit called Neo, so I've been having to give him some of his feedings down his tube. Friday evening while I was getting some last minute groceries, I got a phone call from the NICU. The charge nurse was giving us a courtesy call saying they needed to move RJ down to Neo since he was the most stable baby in the NICU to make room for some other sick ones. Yes, RJ was the healthiest of the selection of babies!!! I was nervous about him being moved and trying to get used to a new environment knowing that we would probably be discharged in a couple days. I had gotten used to our place in Nursery 5.
At rounds on Friday there was talk of either being discharged Sunday or Monday. The Attending for Sunday tended to be bold. She's the one who said RJ was big enough to come out of his isolette box and into a big boy bed quicker than we were expecting. So, the team was getting everything ready in anticipation of possibly discharging us Sunday. All our follow-up appointments were made except one, I spoke w/ the nutritionist about a home feeding plan, and we were trained on the Apnea monitor/oxygen tanks.
Friday RJ and I had some good snuggle time even though it was broken up by some training. Robert left around noon to go home to pack for his 10 yr high school reunion at SVA, so RJ and I hung out. :) My mom and her husband came in Friday night and then we all spent some time w/ RJ on Sabbath in his new room down in Neo. It was much quieter down there. Alarms weren't going off like crazy and there wasn't a lot of conversations or extra noises like up in the NICU. It was rather relaxing. We had a corner spot by the nurses computers.
Saturday night I was nervous b/c there was the possibility of going home Sunday and I wanted to be ready. I ended up having a very hard time falling asleep and it wasn't until after 11:30pm before I finally fell asleep. I got up early Sunday morning to take a shower and blow dry my hair. I wanted to look extra nice in anticipation of taking pictures. I even brought a shirt to change into for Robert and I that coordinated w/ RJ's going home outfit. We packed my mom's car w/ all the necessities for discharge/going home. Robert got on the road early from Virginia to quickly travel back 6hrs. It was a nerve racking morning until rounds took place. Our nurse practitioner for the day came to examine RJ earlier and did her final assessment in anticipation that the Attending would agree to send us home!! Sure enough, around 11am we got the official word, WE ARE GOING HOME WITH OUR LIL BOY!!!! I texted Robert and he was fighting back the tears as he drove. It was a whirlwind for the next multiple hrs as discharge teaching was done and we got everything ready. Robert arrived around 2:30pm and helped take RJ's belongings, including 3 bins full of my frozen milk. :) My mom went ahead and took that home, while Robert and I had a special ride w/ our lil son for the first time. We walked out of the hospital at 4:07pm exactly. Both Robert and I looked at our phones. :) We found a random stranger to take pictures of us as we were walking out of the hospital and getting into the car. It was a very surreal moment.... It's still hard to believe.
RJ seems to be lovin being here at home and all the attention he is getting. We have a lil co-sleeper sitting next to me in our bed so he can sleep right with us. He's such a grunter and wiggler. That's what he does all night. I sure hope he can gain weight w/ all the exercise he does. He makes the funniest lil noises. :) I thought I was tired getting up in the middle of the night to pump. It didn't fully prepare me for q3hr feedings, diaper changing, and clean up that takes around an hr each time. Oh and still trying to pump. Oh mercy... sleep where are you??? It's still so hard to believe that he's home and we actually have a lil baby boy. :) We are soooo blessed....
Last night we gave RJ his first bath at home in the tub. We registered for a bath chair that has a mesh fabric he sits on and can feel the nice warm water. He really seemed to be enjoying himself. It was quite adorable. Oh I have to mention that last night I was getting ready for bed and took a peak at Robert and RJ. Robert was in a deep sleep and RJ was snuggled on his chest fast asleep. It was a precious picture. Wish I had actually taken a picture. :)
Thursday, April 18, 2013
April 18, 2013 Take 2:
Oh boy!!!! Lots of things are in the works!! We are starting discharge planning for first of next week!!! We just have to pray lil RJ continues to gain ounces from now till then and continues taking his PO feeds. They were able to wean his oxygen down to 0.03 liters last evening and he tolerated it great through the night and today. He didn't take as much of his bottles last night, but they were still ok w/ it. He did pretty good w/ his breast feedings today as well. We are planning on taking him home w/ the oxygen and NG tube for any bottle feeds he doesn't finish so he will still get the proper nutrients and gain weight. They started teaching me how to measure and place on a lil baby. It's supposed to be much easier than an adult, thank goodness. This afternoon they put drops in his eyes to dilate them in preparation for his eye exam. That should have taken place by now. Hopefully it's the same as last time and just need to follow up in 1-2 wks. The discharge planner sent over the paper work to get the oxygen stuff in order. They called this afternoon and will meet me at the NICU tomorrow at 10am to do teaching there and then come by the house about 4pm tomorrow afternoon to get the home part set up. That way things don't get pushed till next wk and delay discharge!! Let's see... oh RJ did gain 2 ounces last night and is up to 5 lb 7 oz again.
I can't believe the time is already arrived for the possible take home of our lil boy.... It's been such a loooonnnngggg process and very touch and go at times. He truly is a miracle baby. Multiple people, including myself, didn't think he would survive. He's beat all the odds and is a true fighter. We are so very proud of him and all he's accomplished!!
So here's what our primary PA talked w/ me today about discharge:
F/U in 1-2 wks for eye check
F/U 1 month w/ grad clinic (follows growth, oxygen/apnea monitor need, nutrition, development)
F/U 2-3 days w/ pediatrician
F/U 6 months w/ peds surgery for circumcision
Avoid crowds for multiple weeks- use good judgement. Have people wash hands and stay away if sick. Don't pass around a lot. Avoid grocery store, church, Walmart, mall, etc. for awhile
Nutritionist will make feeding plan to add more breastfeeding to the regime. Will have to add fortifier to milk bottles. May go home on benaprotein for growth.
Probably go home on oxygen and apnea monitor. F/U at grad clinic in 1 month for read out of monitor and see if ok to d/c
This is as much of a journal for me as it is to keep all the fam and friends informed. It's going to be more complicated than a typical baby, but nothing a nurse and doctor can't handle. :) We are just super excited that we will be at home and can get into our own routine.
Love to all!!!
Oh boy!!!! Lots of things are in the works!! We are starting discharge planning for first of next week!!! We just have to pray lil RJ continues to gain ounces from now till then and continues taking his PO feeds. They were able to wean his oxygen down to 0.03 liters last evening and he tolerated it great through the night and today. He didn't take as much of his bottles last night, but they were still ok w/ it. He did pretty good w/ his breast feedings today as well. We are planning on taking him home w/ the oxygen and NG tube for any bottle feeds he doesn't finish so he will still get the proper nutrients and gain weight. They started teaching me how to measure and place on a lil baby. It's supposed to be much easier than an adult, thank goodness. This afternoon they put drops in his eyes to dilate them in preparation for his eye exam. That should have taken place by now. Hopefully it's the same as last time and just need to follow up in 1-2 wks. The discharge planner sent over the paper work to get the oxygen stuff in order. They called this afternoon and will meet me at the NICU tomorrow at 10am to do teaching there and then come by the house about 4pm tomorrow afternoon to get the home part set up. That way things don't get pushed till next wk and delay discharge!! Let's see... oh RJ did gain 2 ounces last night and is up to 5 lb 7 oz again.
I can't believe the time is already arrived for the possible take home of our lil boy.... It's been such a loooonnnngggg process and very touch and go at times. He truly is a miracle baby. Multiple people, including myself, didn't think he would survive. He's beat all the odds and is a true fighter. We are so very proud of him and all he's accomplished!!
So here's what our primary PA talked w/ me today about discharge:
F/U in 1-2 wks for eye check
F/U 1 month w/ grad clinic (follows growth, oxygen/apnea monitor need, nutrition, development)
F/U 2-3 days w/ pediatrician
F/U 6 months w/ peds surgery for circumcision
Avoid crowds for multiple weeks- use good judgement. Have people wash hands and stay away if sick. Don't pass around a lot. Avoid grocery store, church, Walmart, mall, etc. for awhile
Nutritionist will make feeding plan to add more breastfeeding to the regime. Will have to add fortifier to milk bottles. May go home on benaprotein for growth.
Probably go home on oxygen and apnea monitor. F/U at grad clinic in 1 month for read out of monitor and see if ok to d/c
This is as much of a journal for me as it is to keep all the fam and friends informed. It's going to be more complicated than a typical baby, but nothing a nurse and doctor can't handle. :) We are just super excited that we will be at home and can get into our own routine.
Love to all!!!
Wednesday, April 17, 2013
April 17, 2013:
RJ is 3 months old today!!! He wasn't being very cooperative when I wanted to take some pictures this afternoon. Tomorrow is bath night, so we will both be there w/ RJ and can get some family pics w/ his 3 month sticker. :) RJ and I had another great day of breastfeeding and snuggling. I think he's getting a little spoiled w/ being held, but I just can't help it!! I put him back in his bed around 11am to get my phone and take some pics. He started getting fussy and crying a lil. As soon as I picked him up and held him, he fell right back asleep again. :) The team rounded shortly after that while I was still holding him. There were no changes today. I don't think I mentioned that yesterday they went up to 50ml per bottle feed. Dr. Pore said that the only thing holding him back from leaving is consistent weight gain. She wants to see him gain over the next multiple days and if he cooperates let him be released first of next week!!! Today will be the first full day of the increased calories in his bottles, so here's hoping he is above 5 lb 5 oz tonight!!
I have to confess that I'm getting really annoyed w/ being in the NICU. Today the room was noisy w/ all the babies monitors dinging. Ugh.... RJ's oxygen probe was not getting the best connection, so this morning he was super dingy too!! :( This afternoon he did much better. Music therapy came by while I was holding him this afternoon. He didn't seem to like the guitar or other people singing to him, except mommy. :) He was dropping his sats in the 80's w/ the extra stimulation. That's one thing we are going to have to be careful about is the stimulation thing once he comes home.
Anyways, I'm going to finally upload some much overdue pics for you all to see. He's getting to be such an adorable lil boy!! He looks so much like Robert too. It's so cute. :)
Thanks for all your continued prayers and support.
RJ is 3 months old today!!! He wasn't being very cooperative when I wanted to take some pictures this afternoon. Tomorrow is bath night, so we will both be there w/ RJ and can get some family pics w/ his 3 month sticker. :) RJ and I had another great day of breastfeeding and snuggling. I think he's getting a little spoiled w/ being held, but I just can't help it!! I put him back in his bed around 11am to get my phone and take some pics. He started getting fussy and crying a lil. As soon as I picked him up and held him, he fell right back asleep again. :) The team rounded shortly after that while I was still holding him. There were no changes today. I don't think I mentioned that yesterday they went up to 50ml per bottle feed. Dr. Pore said that the only thing holding him back from leaving is consistent weight gain. She wants to see him gain over the next multiple days and if he cooperates let him be released first of next week!!! Today will be the first full day of the increased calories in his bottles, so here's hoping he is above 5 lb 5 oz tonight!!
I have to confess that I'm getting really annoyed w/ being in the NICU. Today the room was noisy w/ all the babies monitors dinging. Ugh.... RJ's oxygen probe was not getting the best connection, so this morning he was super dingy too!! :( This afternoon he did much better. Music therapy came by while I was holding him this afternoon. He didn't seem to like the guitar or other people singing to him, except mommy. :) He was dropping his sats in the 80's w/ the extra stimulation. That's one thing we are going to have to be careful about is the stimulation thing once he comes home.
Anyways, I'm going to finally upload some much overdue pics for you all to see. He's getting to be such an adorable lil boy!! He looks so much like Robert too. It's so cute. :)
Thanks for all your continued prayers and support.
Tuesday, April 16, 2013
April 16, 2013:
Wow... I can't believe that tomorrow RJ will be 3 months old!!! We are getting closer every day to bringing him home. He's doing better w/ his bottle feeds and of course is still doing great w/ breastfeeding. I've been doing it 3 times a day. Yesterday Robert and I went back in the evening to give RJ his bath. I tried breastfeeding him before the bath, but he ended up falling asleep. So we gave him his bath, which he actually seemed to enjoy, and then breastfed him for about 30 min. It's so cute to see his milk coma look after eating. :) He drank more of his bottles last night, so I'm praying and hoping that he will get better w/ his po feeds each night. Yesterday Speech came to see him and do an eval. She recommended feeding him a bottle in the side-lying position, much like if I were breastfeeding him. He seems to know how to pace himself as he drinks too. He still does have the occasional heart rate drop when he drinks to vigorously and forgets to breathe. Silly boy... Yesterday evening he had his head ultrasound and found out it came back clear. No head bleeds!! Today he got a hearing test and passed it very quickly, so that was encouraging. Robert made the comment when he got home that the passing of the hearing test doesn't mean RJ will listen. :) Oh bother...
Yesterday on rounds they increased his feeds to 45ml every 3 hrs in his bottles, except when I'm breastfeeding. Today at rounds Dr. Pore increase the calories in each bottle feed to help RJ consistently gain weight. He lost a lil the other night and just hasn't been gaining much in the past few days. So they went up to 26 calories per bottle and will add Benaprotein to 4 of the 5 bottles he will receive. My 3 breastfeeding's they say have only 20 calories per feed. Dr. Pore is wanting to watch over the next week or so and see that RJ can consistently gain weight and that his need for oxygen does not increase.
There is a slight possibility we could go home next week. I'm trying to be patient, but I'm starting to get anxious to bring him home. :) Being in the hospital for over 3 months with this whole ordeal is quite enough I think. Poor Robert has to go there every day for work, plus be there extra for our son. He's totally in love with his lil family, so it's worth it.
I finally took some pictures of the baby room w/ the nice camera. Now I need to find time to upload them to the computer so I can add them to the blog. :) The process has been started. I've been trying to get errands done each afternoon and get back into an exercise routine. Last week was the first time in a few months I was actually able to exercise. I can tell it's going to be a slow process to get rid of this baby belly. :( I really do want to fit back into my clothes again... Oh bother...
Spring is here, the grass is getting green, and the trees are budding. It's time for our lil man to scurry on home. :) Please continue praying RJ's lungs get stronger and that he starts taking all his PO feedings and can gain weight. Oh and pray that he doesn't develop a hernia. The nurse practitioner examining him today said that's one thing she's found in lil boys getting ready to come home. She said if a hernia develops, they have to take the baby to surgery which requires them to be reintubated. That was enough to scare me, so please pray that doesn't happen. We've been making such great progress over the past few weeks, I want us to keep going in an upward motion.
Wow... I can't believe that tomorrow RJ will be 3 months old!!! We are getting closer every day to bringing him home. He's doing better w/ his bottle feeds and of course is still doing great w/ breastfeeding. I've been doing it 3 times a day. Yesterday Robert and I went back in the evening to give RJ his bath. I tried breastfeeding him before the bath, but he ended up falling asleep. So we gave him his bath, which he actually seemed to enjoy, and then breastfed him for about 30 min. It's so cute to see his milk coma look after eating. :) He drank more of his bottles last night, so I'm praying and hoping that he will get better w/ his po feeds each night. Yesterday Speech came to see him and do an eval. She recommended feeding him a bottle in the side-lying position, much like if I were breastfeeding him. He seems to know how to pace himself as he drinks too. He still does have the occasional heart rate drop when he drinks to vigorously and forgets to breathe. Silly boy... Yesterday evening he had his head ultrasound and found out it came back clear. No head bleeds!! Today he got a hearing test and passed it very quickly, so that was encouraging. Robert made the comment when he got home that the passing of the hearing test doesn't mean RJ will listen. :) Oh bother...
Yesterday on rounds they increased his feeds to 45ml every 3 hrs in his bottles, except when I'm breastfeeding. Today at rounds Dr. Pore increase the calories in each bottle feed to help RJ consistently gain weight. He lost a lil the other night and just hasn't been gaining much in the past few days. So they went up to 26 calories per bottle and will add Benaprotein to 4 of the 5 bottles he will receive. My 3 breastfeeding's they say have only 20 calories per feed. Dr. Pore is wanting to watch over the next week or so and see that RJ can consistently gain weight and that his need for oxygen does not increase.
There is a slight possibility we could go home next week. I'm trying to be patient, but I'm starting to get anxious to bring him home. :) Being in the hospital for over 3 months with this whole ordeal is quite enough I think. Poor Robert has to go there every day for work, plus be there extra for our son. He's totally in love with his lil family, so it's worth it.
I finally took some pictures of the baby room w/ the nice camera. Now I need to find time to upload them to the computer so I can add them to the blog. :) The process has been started. I've been trying to get errands done each afternoon and get back into an exercise routine. Last week was the first time in a few months I was actually able to exercise. I can tell it's going to be a slow process to get rid of this baby belly. :( I really do want to fit back into my clothes again... Oh bother...
Spring is here, the grass is getting green, and the trees are budding. It's time for our lil man to scurry on home. :) Please continue praying RJ's lungs get stronger and that he starts taking all his PO feedings and can gain weight. Oh and pray that he doesn't develop a hernia. The nurse practitioner examining him today said that's one thing she's found in lil boys getting ready to come home. She said if a hernia develops, they have to take the baby to surgery which requires them to be reintubated. That was enough to scare me, so please pray that doesn't happen. We've been making such great progress over the past few weeks, I want us to keep going in an upward motion.
Sunday, April 14, 2013
April 14, 2013:
RJ is a champ!! He had 3 full breastfeeding sessions today at 9am, noon, and 3pm. The last one was a little stressful b/c he didn't want to start eating at 2:30pm, since they kick everyone out at 3pm. He didn't start really feeding till about 3pm. Thankfully we had an awesome nurse and she let us stay behind the curtains and finish feeding. Robert had come to hang out the last couple hours today, so he was hiding w/ RJ and I. Our nurse called us the same time we were calling her tonight in order to check on RJ. She was calling to let us know he took his first full bottle!! He drank all 42mls!! The light bulb went off today that the bottle gives him food too. :) We just called to check on him and he took half his bottle at 9pm. He lost a lil and weighs 5lb 6oz. Here's hoping he keeps feeding well so we can bring him home soon!! Things are happening quicker now and faster than we were anticipating. We are excited to see what happens next!! That's about all for tonight. Nothing new at rounds today.
Thanks for all the prayers, love, and support!!
RJ is a champ!! He had 3 full breastfeeding sessions today at 9am, noon, and 3pm. The last one was a little stressful b/c he didn't want to start eating at 2:30pm, since they kick everyone out at 3pm. He didn't start really feeding till about 3pm. Thankfully we had an awesome nurse and she let us stay behind the curtains and finish feeding. Robert had come to hang out the last couple hours today, so he was hiding w/ RJ and I. Our nurse called us the same time we were calling her tonight in order to check on RJ. She was calling to let us know he took his first full bottle!! He drank all 42mls!! The light bulb went off today that the bottle gives him food too. :) We just called to check on him and he took half his bottle at 9pm. He lost a lil and weighs 5lb 6oz. Here's hoping he keeps feeding well so we can bring him home soon!! Things are happening quicker now and faster than we were anticipating. We are excited to see what happens next!! That's about all for tonight. Nothing new at rounds today.
Thanks for all the prayers, love, and support!!
Saturday, April 13, 2013
April 13, 2013:
RJ is still doing great!! I wanted to give a quick update before turing out the lights. He's still on low oxygen via the nasal cannula. They went up to 0.06 liters yesterday. Yesterday he did well with breastfeeding in the morning. At noon he was tired and we tried giving him a bottle. He took about 10cc. He didn't seem very interested. He was too tired at 2:30pm to feed either, so he got that feeding through his NG tube as well. Last night we came back and gave him his bath. Dad held while I washed. :) RJ put up a stink and then we got him all snuggled up. I was gonna have Robert hold him and then feed him a bottle. I tried getting RJ started on the bottle, but he started sucking too vigorously and choked. He dropped his sats and heart rate. He recovered, but scared us for sure. Anyways, Robert just snuggled him while I went to pump. They looked sooo cute together. :) Before we left we talked w/ one of the PA's about when RJ would be ready to come out of his isolette. She said the bed temp needs to be below 80 degrees for 48 hrs and RJ be able to keep his temp above 97. As we were walking out of the hospital Robert got a call on his cell and it was our night nurse. She said the team had just done night rounds and Dr. Shook, the head of the NICU, said to just bring RJ out and put him in a big boy bed. Since she's the attending and the boss, she's able to go around the policies. :) We were super pumped.
Our lil man is still maintaining his temp in the big boy bed. It's now been over 24hrs. It's like a lil wooden bassinet they would bring into our room after deliver, if it had gone normally. Anyways, he did great with breastfeeding as well!! He fed for 30 min this morning, only about 10 in at noon, and then 25 min at 2:30pm!! He got 2 complete feedings and didn't have to get milk down his NG tube!! When rounding today Dr. Pore asked how many times I would be in for feedings. I stated 9am, noon, and 2:30pm. The team ended up putting in an order for me to breastfeed 3 times a day!! We are very proud of our lil guy. Who knows, the rate he's going he might be home by the end of the month!!
We called tonight to check on him and he's up to 5lb 9oz!! He's getting more chubby and fun to hold!! He did have a poopy diaper, so that's always encouraging. He didn't do well w/ the bottle at his 6pm feeding. Only took about 18ml, so tonight at his 9pm feed his nurse just put it in the NG tube. Speech/OT is supposed to come work w/ him and the bottle. Probably won't be until Monday. I'm so glad he's catching on quick w/ the breastfeeding!!! In order for him to get enough nutrition and the proper calories for growth, he will have to get some supplementation from extra calories added to my milk and given to him via bottle, so he needs to learn to drink one. That's just what they have to do for the preemies.
Okay, it's way past my bedtime once again. Nighty night family and friends.
RJ is still doing great!! I wanted to give a quick update before turing out the lights. He's still on low oxygen via the nasal cannula. They went up to 0.06 liters yesterday. Yesterday he did well with breastfeeding in the morning. At noon he was tired and we tried giving him a bottle. He took about 10cc. He didn't seem very interested. He was too tired at 2:30pm to feed either, so he got that feeding through his NG tube as well. Last night we came back and gave him his bath. Dad held while I washed. :) RJ put up a stink and then we got him all snuggled up. I was gonna have Robert hold him and then feed him a bottle. I tried getting RJ started on the bottle, but he started sucking too vigorously and choked. He dropped his sats and heart rate. He recovered, but scared us for sure. Anyways, Robert just snuggled him while I went to pump. They looked sooo cute together. :) Before we left we talked w/ one of the PA's about when RJ would be ready to come out of his isolette. She said the bed temp needs to be below 80 degrees for 48 hrs and RJ be able to keep his temp above 97. As we were walking out of the hospital Robert got a call on his cell and it was our night nurse. She said the team had just done night rounds and Dr. Shook, the head of the NICU, said to just bring RJ out and put him in a big boy bed. Since she's the attending and the boss, she's able to go around the policies. :) We were super pumped.
Our lil man is still maintaining his temp in the big boy bed. It's now been over 24hrs. It's like a lil wooden bassinet they would bring into our room after deliver, if it had gone normally. Anyways, he did great with breastfeeding as well!! He fed for 30 min this morning, only about 10 in at noon, and then 25 min at 2:30pm!! He got 2 complete feedings and didn't have to get milk down his NG tube!! When rounding today Dr. Pore asked how many times I would be in for feedings. I stated 9am, noon, and 2:30pm. The team ended up putting in an order for me to breastfeed 3 times a day!! We are very proud of our lil guy. Who knows, the rate he's going he might be home by the end of the month!!
We called tonight to check on him and he's up to 5lb 9oz!! He's getting more chubby and fun to hold!! He did have a poopy diaper, so that's always encouraging. He didn't do well w/ the bottle at his 6pm feeding. Only took about 18ml, so tonight at his 9pm feed his nurse just put it in the NG tube. Speech/OT is supposed to come work w/ him and the bottle. Probably won't be until Monday. I'm so glad he's catching on quick w/ the breastfeeding!!! In order for him to get enough nutrition and the proper calories for growth, he will have to get some supplementation from extra calories added to my milk and given to him via bottle, so he needs to learn to drink one. That's just what they have to do for the preemies.
Okay, it's way past my bedtime once again. Nighty night family and friends.
Thursday, April 11, 2013
April 11, 2013 Take 2:
I put up the pics first tonight and now I'm writing while lying in bed relaxed. Today was another fabulous day with RJ. He surprised us and stayed awake for over 3 hrs!! He was awake when I arrived around 8:45am to do his 9am cares and then hold him. He stayed awake during our snuggling/breastfeeding time. He latched on again and did a lot of looking around. I'm not sure actually how much he got, but he seemed to be getting more comfortable w/ the idea. I have a new reason to get up and out of the house in the morning. I need to help teach RJ how to get his own milk!! He was so tired from staying a wake all morning, that after his noon cares, he was out like rock. There was no waking him up. He got fussy like normal when he wanted to change positions, but that was about it. He barely even moved around at 2:30pm when I did his next cares. He did start dropping his sats when I told him I was leaving. It's funny how the babies can sense that. I'm already anxious to get back there tomorrow morning and see how he does breastfeeding. Those breast shields are a life saver for the lil preemies.
They didn't change much on rounds today. They stopped his sodium chloride and that was about it. His eye exam earlier this week was the same. No changes from the last one, so that is encouraging. They just want to go slowly w/ the PO feeds and not rush him. It's been a super big week already switching to the nasal cannula and then starting breastfeeding. We don't want to overwhelm the lil guy.
I hope you all enjoy the pics as much as I do!! The bath one is my favorite!! It's already bath time tomorrow night, so I'm gearing up for it already!! :) Oh I have to mention that the lactation consultant today told me a different way to hold RJ for breastfeeding and she didn't mind me using the boppie pillow for support, unlike the other lactation consultant. I can see they both have differences of practice. I'm just going to have to formulate my own plan taking both of their ideas. :)
Alrighty, it's time to turn out the lights. My 1am pumping time is just around the corner. Goodnight family and friends...
Thanks for the love, support, and prayers!!
I put up the pics first tonight and now I'm writing while lying in bed relaxed. Today was another fabulous day with RJ. He surprised us and stayed awake for over 3 hrs!! He was awake when I arrived around 8:45am to do his 9am cares and then hold him. He stayed awake during our snuggling/breastfeeding time. He latched on again and did a lot of looking around. I'm not sure actually how much he got, but he seemed to be getting more comfortable w/ the idea. I have a new reason to get up and out of the house in the morning. I need to help teach RJ how to get his own milk!! He was so tired from staying a wake all morning, that after his noon cares, he was out like rock. There was no waking him up. He got fussy like normal when he wanted to change positions, but that was about it. He barely even moved around at 2:30pm when I did his next cares. He did start dropping his sats when I told him I was leaving. It's funny how the babies can sense that. I'm already anxious to get back there tomorrow morning and see how he does breastfeeding. Those breast shields are a life saver for the lil preemies.
They didn't change much on rounds today. They stopped his sodium chloride and that was about it. His eye exam earlier this week was the same. No changes from the last one, so that is encouraging. They just want to go slowly w/ the PO feeds and not rush him. It's been a super big week already switching to the nasal cannula and then starting breastfeeding. We don't want to overwhelm the lil guy.
I hope you all enjoy the pics as much as I do!! The bath one is my favorite!! It's already bath time tomorrow night, so I'm gearing up for it already!! :) Oh I have to mention that the lactation consultant today told me a different way to hold RJ for breastfeeding and she didn't mind me using the boppie pillow for support, unlike the other lactation consultant. I can see they both have differences of practice. I'm just going to have to formulate my own plan taking both of their ideas. :)
Alrighty, it's time to turn out the lights. My 1am pumping time is just around the corner. Goodnight family and friends...
Thanks for the love, support, and prayers!!
Wednesday, April 10, 2013
April 10, 2013:
Today was a momentous occasion. RJ got an A+ from the lactation consultant on his first try at breastfeeding!! We ended up using a nipple shield, which is more like his binki feel, and he had some really good sucking motions. We think he even got a lil milk! This all took place at his 9am feeding. I tried again at the noon and even tried a bottle, but he was just too sleepy and not interested. He was sleepy again at around 2:30pm for his next feeding. The lactation consultant said for us to try at least once a day to get him used to it. It could be a slow process. He's had all sorts of foreign objects in his mouth for the entirety of his life so far, so introducing something that is supposed to be his source for food is just not an instant connection for him. I'm hoping that doing it a little each day, he will catch on. He seems to have been so bright and smart so far, I'm sure he will catch on with the whole breastfeeding and bottle shortly. :) One of the nurses was telling me that babies often prefer breastfeeding over the bottle b/c they can control it better. The bottle milk tends to come out quicker. Here's hoping RJ prefers the breast. :)
When I came in this morning Robert was already there. He'd had an early conference to attend and then stopped by to see RJ before clinic started. I didn't notice at first but Robert pointed out to me that RJ's feeding tube had been moved to his nose!! Now he only has a small feeding tube and the clear nasal cannula on his face now!! We are knocking down the equipment required. :) Of course he still has cords to connect to the the heart and oxygen monitor. Poor lil boy is starting to break out on his chest from the continuous use of the EKG leads. :( We are having to rotate sites each time he has a bath to give the skin time to heal. Thankfully it doesn't seem to bother him.
No changes were made to RJ's plan today during rounds. They are all very impressed at his response to the nasal cannula. This evening he was on 0.03 liters of oxygen. That seems like NOTHING in comparison to the adult world. The nurses said that sometimes the babies need just that little whiff to make them feel better. Sometimes they will only need it during feeding time. Here's hoping RJ can wean off of it completely in the weeks to come. We still don't have an actually target go home date. Maybe once he starts feeding by mouth they will have a better idea.
At 3pm every day all the parents get kicked out of the NICU for a few hrs while "shift change" is taking place. Anyways, I usually stay w/ RJ till the last minute and then go pump. When I came back this afternoon to return my stuff to the nursery, there was someone HOLDING my baby. It caught me off guard and made me slightly mad. It was one of the music therapy girls coming to work w/ RJ. I had not given permission for such, but I guess it will be of benefit. It just threw me when I saw it. He was totally asleep and who knows if he heard anything she said. I just had to share that bit.
Oh, I almost forgot to mention that yesterday morning I cut RJ's fingernails for the first time. They were getting so long!! It was a little nerve racking cause I didn't want to hurt him or make him bleed. Thankfully I kept a good grip on his fingers and had no accidents. :) Robert had hard time believing there was anything to cut, but rest assured I've been feeling those nails the past few days scratching my chest during our snuggle sessions. Now neither RJ nor I will get scratched from his long nails. :)
Last night we got home late after giving RJ a bath and Robert holding him. I had the worst time getting out of the bed this morning, so I'm saying good night and going to turn in early.
Thanks again for all the love, support, and prayers. Keep them coming!!!
Today was a momentous occasion. RJ got an A+ from the lactation consultant on his first try at breastfeeding!! We ended up using a nipple shield, which is more like his binki feel, and he had some really good sucking motions. We think he even got a lil milk! This all took place at his 9am feeding. I tried again at the noon and even tried a bottle, but he was just too sleepy and not interested. He was sleepy again at around 2:30pm for his next feeding. The lactation consultant said for us to try at least once a day to get him used to it. It could be a slow process. He's had all sorts of foreign objects in his mouth for the entirety of his life so far, so introducing something that is supposed to be his source for food is just not an instant connection for him. I'm hoping that doing it a little each day, he will catch on. He seems to have been so bright and smart so far, I'm sure he will catch on with the whole breastfeeding and bottle shortly. :) One of the nurses was telling me that babies often prefer breastfeeding over the bottle b/c they can control it better. The bottle milk tends to come out quicker. Here's hoping RJ prefers the breast. :)
When I came in this morning Robert was already there. He'd had an early conference to attend and then stopped by to see RJ before clinic started. I didn't notice at first but Robert pointed out to me that RJ's feeding tube had been moved to his nose!! Now he only has a small feeding tube and the clear nasal cannula on his face now!! We are knocking down the equipment required. :) Of course he still has cords to connect to the the heart and oxygen monitor. Poor lil boy is starting to break out on his chest from the continuous use of the EKG leads. :( We are having to rotate sites each time he has a bath to give the skin time to heal. Thankfully it doesn't seem to bother him.
No changes were made to RJ's plan today during rounds. They are all very impressed at his response to the nasal cannula. This evening he was on 0.03 liters of oxygen. That seems like NOTHING in comparison to the adult world. The nurses said that sometimes the babies need just that little whiff to make them feel better. Sometimes they will only need it during feeding time. Here's hoping RJ can wean off of it completely in the weeks to come. We still don't have an actually target go home date. Maybe once he starts feeding by mouth they will have a better idea.
At 3pm every day all the parents get kicked out of the NICU for a few hrs while "shift change" is taking place. Anyways, I usually stay w/ RJ till the last minute and then go pump. When I came back this afternoon to return my stuff to the nursery, there was someone HOLDING my baby. It caught me off guard and made me slightly mad. It was one of the music therapy girls coming to work w/ RJ. I had not given permission for such, but I guess it will be of benefit. It just threw me when I saw it. He was totally asleep and who knows if he heard anything she said. I just had to share that bit.
Oh, I almost forgot to mention that yesterday morning I cut RJ's fingernails for the first time. They were getting so long!! It was a little nerve racking cause I didn't want to hurt him or make him bleed. Thankfully I kept a good grip on his fingers and had no accidents. :) Robert had hard time believing there was anything to cut, but rest assured I've been feeling those nails the past few days scratching my chest during our snuggle sessions. Now neither RJ nor I will get scratched from his long nails. :)
Last night we got home late after giving RJ a bath and Robert holding him. I had the worst time getting out of the bed this morning, so I'm saying good night and going to turn in early.
Thanks again for all the love, support, and prayers. Keep them coming!!!
Tuesday, April 9, 2013
April 9, 2013:
Well Dr. Desai decided RJ should leap instead of take baby steps to weaning off the bubble cpap. This afternoon RJ was put on nasal cannula only. No pressure anymore. He was started on 0.5 liters of oxygen and when we called about 30 min ago, he was down to 0.06 liters of oxygen. Yikers!!! They switched his oxygen source while I was holding him this afternoon. Dr. Desai said if we don't try and push him, then we won't know what he can really do. So far he seems to not even notice what's happened. He's been keeping his sats in the upper 90's - 100% all afternoon. Of course when he wiggles, grunts, and holds his breath his sats go down and then bounce right back up again. He is really looking like a normal baby. The nasal cannula is so tiny and clear in color. We were both shocked this morning when the decision was made. We still thought there was going to be some weaning of the pressures on the bubble cpap before transitioning. The practitioners were all surprised as well. Robert and I are planning on going back soon to give RJ his bath. Since he's tolerating his new oxygen source so well, there's no need to hold on the bath like I thought they'd say. We are going to plan on giving him another big boy bath in the lil basin. Please continue to pray hard that RJ keeps those lungs working and that he will be strong enough to keep flying. I'm tired of taking steps backwards. I want us to continue forwards...
This afternoon we started introducing RJ to the breast. The lactation consultant wasn't able to be there today, but will help tomorrow. She said to just let him nuzzle around. It didn't seem like a very successful session, but here's hopin tomorrow is better. :) Robert happened to be around and was able to witness the trial. :) He's done so well with his binki, it seems that he would do well w/ the nipple. I'm guessing they will start PO feeds tomorrow the rapid pace we are treading right now. We will keep everyone posted.
Pray hard these next few days that our lil man stays on the nasal cannula and does well!!
Well Dr. Desai decided RJ should leap instead of take baby steps to weaning off the bubble cpap. This afternoon RJ was put on nasal cannula only. No pressure anymore. He was started on 0.5 liters of oxygen and when we called about 30 min ago, he was down to 0.06 liters of oxygen. Yikers!!! They switched his oxygen source while I was holding him this afternoon. Dr. Desai said if we don't try and push him, then we won't know what he can really do. So far he seems to not even notice what's happened. He's been keeping his sats in the upper 90's - 100% all afternoon. Of course when he wiggles, grunts, and holds his breath his sats go down and then bounce right back up again. He is really looking like a normal baby. The nasal cannula is so tiny and clear in color. We were both shocked this morning when the decision was made. We still thought there was going to be some weaning of the pressures on the bubble cpap before transitioning. The practitioners were all surprised as well. Robert and I are planning on going back soon to give RJ his bath. Since he's tolerating his new oxygen source so well, there's no need to hold on the bath like I thought they'd say. We are going to plan on giving him another big boy bath in the lil basin. Please continue to pray hard that RJ keeps those lungs working and that he will be strong enough to keep flying. I'm tired of taking steps backwards. I want us to continue forwards...
This afternoon we started introducing RJ to the breast. The lactation consultant wasn't able to be there today, but will help tomorrow. She said to just let him nuzzle around. It didn't seem like a very successful session, but here's hopin tomorrow is better. :) Robert happened to be around and was able to witness the trial. :) He's done so well with his binki, it seems that he would do well w/ the nipple. I'm guessing they will start PO feeds tomorrow the rapid pace we are treading right now. We will keep everyone posted.
Pray hard these next few days that our lil man stays on the nasal cannula and does well!!
Monday, April 8, 2013
April 8, 2013:
RJ is still doing great!! They made a number of changes on rounds today. They weaned his bubble cpap pressure from 8 to 7, d/c'd his diuretics, potassium, and phosphorus, lowered his sodium med, and increased his feeds to 42 mls/hr. That's the most changes we've had in one day for weeks!! They also talked about having the lactation specialist come and start helping RJ get oriented to breastfeeding. It didn't happen today, so I'm hoping it will happen tomorrow. I'm anxious to be able to breastfeed like a normal mommy. I want to experience it so bad... So, lots of progress today and when we checked on him this evening he was still on room air and not even really noticing his pressures got weaned. As of last night he was up to 4 lb 15 oz, so I'm guessing when we call before bed that he will be up to the 5 lb mark!! We had such fun snuggling today. I really think being able to hold him more is aiding in his increased weight gain. He sleeps so soundly either in the crook of my arm or on my chest.
I'm actually blogging from RJ's room while sitting in the lazy boy chair. I can imagine having him home and sitting here rocking him or sleeping with him. Maybe we'll get lucky and he'll come home for my birthday (May 3rd)!! It would by far be the best birthday present ever...
Welp, it's about time to pump again so I can keep up with RJ's feedings. Thanks for all the prayers, love, and support!!
RJ is still doing great!! They made a number of changes on rounds today. They weaned his bubble cpap pressure from 8 to 7, d/c'd his diuretics, potassium, and phosphorus, lowered his sodium med, and increased his feeds to 42 mls/hr. That's the most changes we've had in one day for weeks!! They also talked about having the lactation specialist come and start helping RJ get oriented to breastfeeding. It didn't happen today, so I'm hoping it will happen tomorrow. I'm anxious to be able to breastfeed like a normal mommy. I want to experience it so bad... So, lots of progress today and when we checked on him this evening he was still on room air and not even really noticing his pressures got weaned. As of last night he was up to 4 lb 15 oz, so I'm guessing when we call before bed that he will be up to the 5 lb mark!! We had such fun snuggling today. I really think being able to hold him more is aiding in his increased weight gain. He sleeps so soundly either in the crook of my arm or on my chest.
I'm actually blogging from RJ's room while sitting in the lazy boy chair. I can imagine having him home and sitting here rocking him or sleeping with him. Maybe we'll get lucky and he'll come home for my birthday (May 3rd)!! It would by far be the best birthday present ever...
Welp, it's about time to pump again so I can keep up with RJ's feedings. Thanks for all the prayers, love, and support!!
Sunday, April 7, 2013
April 7, 2013:
RJ is doing fantastic on his Bubble CPAP!!! He's still been able to be on room air from just minutes after being switched to it. His chest x-ray from yesterday was the best he's had his whole entire life!! Everyone is very happy with his progress. He's been breathing great. We've been having some wonderful snuggle sessions. He's able to keep his sats in the upper 90's-100%!! I'm getting to hold him twice a day now. Our nurse the past 2 days said that since he does so great she doesn't see why we couldn't hold him even more. :) The plan is to wean his pressures tomorrow as we move towards the soon possibility of starting a bottle and breastfeeding!! That's what I'm super excited about. He's still doing great with using his binki and tolerating his feeds well. His weight the other night was 4 lb 14 oz. We were a lil skeptical b/c it was such a huge jump from previous. Last night he had the same weight, but early this morning and then during today he's had several poopies. One diaper today weighed 50grams, so I'm guessing his weight will be down a lil tonight which should be more accurate. The silly lil guy likes to hold onto that poop. He's been having very stinky gas the past couple days while I've been holding him, so glad it finally produced something. :)
Last night we got to give RJ a big boy bath!! We got to bring him outside his isolette and bathe him in a tub of water at the bedside. I held him like a football to begin with while I washed his hair and face over the tub. Then I held his head/neck secure while we dunked his lil body into the warm water to bathe the rest of him. We got it on video and it's so cute. :) He was not the biggest fan when we dunked his lil body into the water. It's going to just take some getting used to. His lil legs are so strong and he would push against the side of the wash basin. I really had to hold onto him. He's going to be walking before we know it. :) I'll see if I can figure out how to attach a movie to this blog for all to see.
Anyways, I have a vascular MD appointment the end of this month to get a second opinion on my pseudo aneurysm treatment. I was able to get all my records and images last week and read through them. It's funny being on this side of the medical information. When you are the doctors and nurses you tend to sugar coat things for your patients and don't always give them every detail. Reading through my medical records I found information that was grazed over when it was told to us. The radiologist reports stated I did have a pseudo aneurysm, unlike what the docs told us that they thought I had one so wanted to do further imaging. Also, the "significant narrowing of my right ICA" happened to be 75-80%. That would have been nice to know. Anyways, I'm glad I'm getting adequate blood flow now and don't hear anymore of that whooshing in my right ear. I'm also glad that the aspirin I'm taking is preventing me from getting any blood clots. I'm praying that my pseudo aneurysm will just disappear and I can be an even more special case, since my stroke doc stated he'd never seen one disappear.
Well my husband is on his way home from work and we are going to spend a few hours together before crawling into bed for the night. I already took one nap this afternoon, but the bed sounds all too inviting right now. :) Thanks again for all your prayers, support, and continued love. We greatly appreciate it!!
RJ is doing fantastic on his Bubble CPAP!!! He's still been able to be on room air from just minutes after being switched to it. His chest x-ray from yesterday was the best he's had his whole entire life!! Everyone is very happy with his progress. He's been breathing great. We've been having some wonderful snuggle sessions. He's able to keep his sats in the upper 90's-100%!! I'm getting to hold him twice a day now. Our nurse the past 2 days said that since he does so great she doesn't see why we couldn't hold him even more. :) The plan is to wean his pressures tomorrow as we move towards the soon possibility of starting a bottle and breastfeeding!! That's what I'm super excited about. He's still doing great with using his binki and tolerating his feeds well. His weight the other night was 4 lb 14 oz. We were a lil skeptical b/c it was such a huge jump from previous. Last night he had the same weight, but early this morning and then during today he's had several poopies. One diaper today weighed 50grams, so I'm guessing his weight will be down a lil tonight which should be more accurate. The silly lil guy likes to hold onto that poop. He's been having very stinky gas the past couple days while I've been holding him, so glad it finally produced something. :)
Last night we got to give RJ a big boy bath!! We got to bring him outside his isolette and bathe him in a tub of water at the bedside. I held him like a football to begin with while I washed his hair and face over the tub. Then I held his head/neck secure while we dunked his lil body into the warm water to bathe the rest of him. We got it on video and it's so cute. :) He was not the biggest fan when we dunked his lil body into the water. It's going to just take some getting used to. His lil legs are so strong and he would push against the side of the wash basin. I really had to hold onto him. He's going to be walking before we know it. :) I'll see if I can figure out how to attach a movie to this blog for all to see.
Anyways, I have a vascular MD appointment the end of this month to get a second opinion on my pseudo aneurysm treatment. I was able to get all my records and images last week and read through them. It's funny being on this side of the medical information. When you are the doctors and nurses you tend to sugar coat things for your patients and don't always give them every detail. Reading through my medical records I found information that was grazed over when it was told to us. The radiologist reports stated I did have a pseudo aneurysm, unlike what the docs told us that they thought I had one so wanted to do further imaging. Also, the "significant narrowing of my right ICA" happened to be 75-80%. That would have been nice to know. Anyways, I'm glad I'm getting adequate blood flow now and don't hear anymore of that whooshing in my right ear. I'm also glad that the aspirin I'm taking is preventing me from getting any blood clots. I'm praying that my pseudo aneurysm will just disappear and I can be an even more special case, since my stroke doc stated he'd never seen one disappear.
Well my husband is on his way home from work and we are going to spend a few hours together before crawling into bed for the night. I already took one nap this afternoon, but the bed sounds all too inviting right now. :) Thanks again for all your prayers, support, and continued love. We greatly appreciate it!!
Thursday, April 4, 2013
April 4, 2013:
I had high ambitions to take a bubble bath tonight and then blog sitting in the lazy boy chair in RJ's room. Unfortunately I feel asleep on the couch after supper and just couldn't move. The week of round the clock pumping and spending time w/ RJ in a darkly lit room is catching up w/ me. It's so easy to fall asleep while holding him in the lawn chair I get to use. :) Both yesterday and today they weaned the rate for RJ's NIPPV. Today they went up on his feeds to 40mls per 3 hrs. The new exciting and scary news for today is that they are going to try switching him to bubble cpap tomorrow!!! Yikers!!! He's still requiring low oxygen supplementation and is over 2 wks post extubation again. I'm really hoping that this transition will stick. He's so much bigger and has had the second round of steriods and the diuretics. Dr. Desai, who is his attending, is a super sweet Indian lady. She actually started the NICU here at UK. I think she's in her 70's, so she knows tons. She tends to push the baby's and they fly. Robert just read that she came to UK in 1972. RJ is in good hands for sure.
Yesterday RJ and I had a wonderful snuggle time. I love kissing his lil head and face. He's so sqeezable. I ended up coming back last night to give him his bath, which he tolerated well. He appreciates the warmer water and didn't cry hardly at all. His weight was 4 lb 9 oz. Afterwards I held him while he was getting his feed and his nurse changed his bed. It didn't take long sucky on the binki before he feel fast asleep in the crook of my arm. I was able to put him back into his bed without him waking up and said good night.
At some point yesterday afternoon the manager, Kathy, pulled me aside and let me know that Dr. Desai said I could most assuradly get RJ out multiple times a day and could be in the same shift. So, we had a new plan today. I was there about 9am to do his cares and then held him till about 11:30am. He was sleeping like a rock, while keeping his sats up. Then I let his nurse to his noon cares while I went to pump. When I came back he was wide awake and his nurse was sitting there talking to him and holding the binki in his mouth. :) I then got him out a second time and it was super duper wonderful!! It took him a lil bit to find a comfy position, but once again he slept well. After doing his next cares around 2:30pm, I was getting ready to tell him good bye. I opened the side door to his bed and stuck my head in right next to his face. He was wide eyed as I kissed him multiple times on his face. He just stared at me. It was so much fun. :) I could have stayed with him all afternoon if the NICU didn't kick all the parents out at 3pm for "shift change". :(
Anyways, I did get some errands done this afternoon. Then a wonderful friend came by to bring us supper, which by the way was delicious chili and cornbread. :) Now it's time to turn in for the night. Tomorrow will be a big day. RJ has to stop being lazy and just letting his machine take the breaths for him. He's going to have to use those growing lungs. Please say big prayers for us tomorrow!!!
I had high ambitions to take a bubble bath tonight and then blog sitting in the lazy boy chair in RJ's room. Unfortunately I feel asleep on the couch after supper and just couldn't move. The week of round the clock pumping and spending time w/ RJ in a darkly lit room is catching up w/ me. It's so easy to fall asleep while holding him in the lawn chair I get to use. :) Both yesterday and today they weaned the rate for RJ's NIPPV. Today they went up on his feeds to 40mls per 3 hrs. The new exciting and scary news for today is that they are going to try switching him to bubble cpap tomorrow!!! Yikers!!! He's still requiring low oxygen supplementation and is over 2 wks post extubation again. I'm really hoping that this transition will stick. He's so much bigger and has had the second round of steriods and the diuretics. Dr. Desai, who is his attending, is a super sweet Indian lady. She actually started the NICU here at UK. I think she's in her 70's, so she knows tons. She tends to push the baby's and they fly. Robert just read that she came to UK in 1972. RJ is in good hands for sure.
Yesterday RJ and I had a wonderful snuggle time. I love kissing his lil head and face. He's so sqeezable. I ended up coming back last night to give him his bath, which he tolerated well. He appreciates the warmer water and didn't cry hardly at all. His weight was 4 lb 9 oz. Afterwards I held him while he was getting his feed and his nurse changed his bed. It didn't take long sucky on the binki before he feel fast asleep in the crook of my arm. I was able to put him back into his bed without him waking up and said good night.
At some point yesterday afternoon the manager, Kathy, pulled me aside and let me know that Dr. Desai said I could most assuradly get RJ out multiple times a day and could be in the same shift. So, we had a new plan today. I was there about 9am to do his cares and then held him till about 11:30am. He was sleeping like a rock, while keeping his sats up. Then I let his nurse to his noon cares while I went to pump. When I came back he was wide awake and his nurse was sitting there talking to him and holding the binki in his mouth. :) I then got him out a second time and it was super duper wonderful!! It took him a lil bit to find a comfy position, but once again he slept well. After doing his next cares around 2:30pm, I was getting ready to tell him good bye. I opened the side door to his bed and stuck my head in right next to his face. He was wide eyed as I kissed him multiple times on his face. He just stared at me. It was so much fun. :) I could have stayed with him all afternoon if the NICU didn't kick all the parents out at 3pm for "shift change". :(
Anyways, I did get some errands done this afternoon. Then a wonderful friend came by to bring us supper, which by the way was delicious chili and cornbread. :) Now it's time to turn in for the night. Tomorrow will be a big day. RJ has to stop being lazy and just letting his machine take the breaths for him. He's going to have to use those growing lungs. Please say big prayers for us tomorrow!!!
Tuesday, April 2, 2013
April 2, 2013:
Wow... it's already a new month. We are actually in RJ's birth month now. He will be 37 weeks tomorrow!! We are making progress. He's still doing great with his oxygen requirement and keeping his Fio2 in the low 20's. Yesterday and today it was at 23%. Monday he had a new chest x-ray and labs. They weaned some more pressure on his NIPPV. Today they adjusted his sodium med since his level was high. He's doing great with is feeds. They've had to give him a few glycerine chips (rectal suppositories) to help him poop lately. Daddy got to change a nice juicy one last night at cares time. :) Thursday he will have another chest x-ray and labs to see if they can wean anything else on the NIPPV. We've had some good snuggle sessions lately. On Sunday my dad got to hold him for the first time and get to see him get a bath later in the evening. RJ had the best bath ever with keeping his sats up. I think it was the magic of extra warm water. :)
On the baby room front, Sunday was a super busy day. We hung shelves on the decal tree we put up. We got baskets for the changing table to help me keep things organized. We hung the curtain rod and curtain. One of the most important things was securing the changing table pad to the table. I know we already have a wiggle bug, so I want to try and prevent any wiggling accidents off the changing table if possible. :)
Like I mentioned in the last blog, my health is still an issue. I really wish we could just close the chapter on my health problems and be able to move on. I was able to get a last minute appointment with my Internal Med group. My doc wasn't available, but one of her partners saw me. I'm supposed to have them manage my blood pressure. I was told from this point on it must be in the 120/70 range or less. They increased my Nifedipine to 60mg daily and come back in 3-4 wks for f/u. I asked about getting a copy of all my images and getting a second opinion. He's going to refer me to a top notch vascular surgeon here at UK. I have not received that appt yet, nor have I received the 2 month repeat CTA appointment. I feel like I'm spending my time in the NICU and doctors offices. The thought of the pseudoaneurysm being there in 2 months and having to have an operation scares me. We are hoping RJ is home end of April or first of May. I don't want to have to deal with being hospitalized right after my baby has come home... I also want to be safe and alive for many more years... This is truly a tough situation to be in and I wish it upon no person. I've come up with a new phrase for this whole situation with my health and RJ's. It is all a TRAUMATIC BLESSING.
This afternoon I was able to spend an hour talking to the NICU manager. She'd passed by our nursery the other day and I was super emotional. She asked how I was doing and I broke down crying. She came back and gave me her business card with her personal cell phone written on it. Today she wanted to hear from my perspective how the pregnancy, hospitalization, NICU experience has been. Through our discussion we've begun formulating a plan to better suite Roberts and my needs. She wants us to have a positive experience and take away as much frustration and stress as possible while we are in the NICU with RJ. She's going to talk with our primary PA and RN. She's going to look into helping our daily nurses be more consistent versus having multiple nurses throughout the week. She's going to look into us being able to hold RJ multiple times per shift now that he's getting older. She's been a NICU mom herself with twins, so she totally understands all the feelings and emotions I'm experiencing. She said today that this is the worst thing I'll ever experience. I sure pray it is. This truly has been a traumatic event in our lives. She told me to text her cell phone day or night in the event that I needed someone to talk w/ or cry w/. She has a very tender spirit and was very nurturing. It was a therapeutic meeting and I look forward to some positive changes for our NICU experience.
Thank you again for all the prayers and support you all have been providing.
Wow... it's already a new month. We are actually in RJ's birth month now. He will be 37 weeks tomorrow!! We are making progress. He's still doing great with his oxygen requirement and keeping his Fio2 in the low 20's. Yesterday and today it was at 23%. Monday he had a new chest x-ray and labs. They weaned some more pressure on his NIPPV. Today they adjusted his sodium med since his level was high. He's doing great with is feeds. They've had to give him a few glycerine chips (rectal suppositories) to help him poop lately. Daddy got to change a nice juicy one last night at cares time. :) Thursday he will have another chest x-ray and labs to see if they can wean anything else on the NIPPV. We've had some good snuggle sessions lately. On Sunday my dad got to hold him for the first time and get to see him get a bath later in the evening. RJ had the best bath ever with keeping his sats up. I think it was the magic of extra warm water. :)
On the baby room front, Sunday was a super busy day. We hung shelves on the decal tree we put up. We got baskets for the changing table to help me keep things organized. We hung the curtain rod and curtain. One of the most important things was securing the changing table pad to the table. I know we already have a wiggle bug, so I want to try and prevent any wiggling accidents off the changing table if possible. :)
Like I mentioned in the last blog, my health is still an issue. I really wish we could just close the chapter on my health problems and be able to move on. I was able to get a last minute appointment with my Internal Med group. My doc wasn't available, but one of her partners saw me. I'm supposed to have them manage my blood pressure. I was told from this point on it must be in the 120/70 range or less. They increased my Nifedipine to 60mg daily and come back in 3-4 wks for f/u. I asked about getting a copy of all my images and getting a second opinion. He's going to refer me to a top notch vascular surgeon here at UK. I have not received that appt yet, nor have I received the 2 month repeat CTA appointment. I feel like I'm spending my time in the NICU and doctors offices. The thought of the pseudoaneurysm being there in 2 months and having to have an operation scares me. We are hoping RJ is home end of April or first of May. I don't want to have to deal with being hospitalized right after my baby has come home... I also want to be safe and alive for many more years... This is truly a tough situation to be in and I wish it upon no person. I've come up with a new phrase for this whole situation with my health and RJ's. It is all a TRAUMATIC BLESSING.
This afternoon I was able to spend an hour talking to the NICU manager. She'd passed by our nursery the other day and I was super emotional. She asked how I was doing and I broke down crying. She came back and gave me her business card with her personal cell phone written on it. Today she wanted to hear from my perspective how the pregnancy, hospitalization, NICU experience has been. Through our discussion we've begun formulating a plan to better suite Roberts and my needs. She wants us to have a positive experience and take away as much frustration and stress as possible while we are in the NICU with RJ. She's going to talk with our primary PA and RN. She's going to look into helping our daily nurses be more consistent versus having multiple nurses throughout the week. She's going to look into us being able to hold RJ multiple times per shift now that he's getting older. She's been a NICU mom herself with twins, so she totally understands all the feelings and emotions I'm experiencing. She said today that this is the worst thing I'll ever experience. I sure pray it is. This truly has been a traumatic event in our lives. She told me to text her cell phone day or night in the event that I needed someone to talk w/ or cry w/. She has a very tender spirit and was very nurturing. It was a therapeutic meeting and I look forward to some positive changes for our NICU experience.
Thank you again for all the prayers and support you all have been providing.
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