JETT
Jett is apparently 'stable' enough to have the contrast imaging done. The Dr will be waiting a couple of days because as of tonight he has finished his anti biotics so she wants to make sure he doesn't show signs of infection now he's off them.. IF he doesn't, the contrast imaging will be done and then if it does show a stricture (which they are almost certain is the case)he will probably be in for surgery when theatre is next available.. It could be that day, or soon after. Either way, Jett will be having surgery, and soon. Probably this week.. :(. I'm so so scared, I haven't had a chance to talk with the surgeons to discuss exactly what happens but I will tomorrow..
I don't want my tiny baby to have surgery. So more tears today.. It isn't fair, my poor little Jett :(
Apart from that crap news, he is doing ok, oxygen down to 27% most of today. He had a wash and weigh this morning he now weighs 1546gms!! He still has fluid, and still had his tubes being held, so it's not that accurate, but he has gotten bigger. He's soooo CUTE!! He has such a personality, responding to everything. He wasn't liking being touched today, I think he was a bit cold with the port holes of the isolette open, everytime I had my hand in he'd wriggle and desat. I'd take my hands out and close the window his oxygen would go up.. Last night though it was the opposite, he loved Mummy stroking his head.. I love my Bubba so much :)
MUMMY
I'm very upset and scared. Surgery is a big deal and my babe is so tiny.. I hate the uncertainty of it all.. I hate that I could walk in one morning to be told the contrast imaging will be done then surgery could be that day.. I wish I could at least have a day, a time, so I could process it a bit more before it happens..
This sux, this place is a very hard place to be in. I can't wait for the day I take my baby home..
Monday, October 31, 2011
Sunday, October 30, 2011
Day 32.
JETT
Again my baby was looking better today. Tummy and fluid going down every day.. He was again very active today.. He had his rate increased on his vent today because he was having brady's and his sats were down, but apart from that he was good.. I left for quiet time, then when I went back he was having a cannula resited because it had tissued. I can't describe how that feels, to know that your son is about to be put through pain and you can do nothing about it.. Then he had his tube retaped.. More trauma :( I was just a bawling mess, and haven't quite got over it, even though he is totally settled and his sats are good.I know he needed the procedures to be done, but it doesn't make it any easier. I wish I could protect him from all this..
His tube did need to be retaped, that's probably why he was swinging from low to high with his oxygen..
Other news he loves his dummy, as you can tell by the picture :)
Last night I spoke with a Dr who confirmed that if Jett does in fact have a stricture which they are almost certain he does, he will need surgery. For now though because he is so unwell, they are treating him very conservatively. He will have to have the contrast x ray as soon as he is stable, then we'll take it from there. Surgery is a very frightening thought..
MUMMY
Mummy feels like shit. I hate that my baby is going through so much.. I am also losing patience with people. I KNOW there is no possible way to understand what this is like unless you have been here, but seriously, people have no idea.. The amount of times I have heard "Oh that's great Jett's doing well, you must be happy" Umm, doing well, is simply just something I say.. Doing well, means he is not dying today. Doing well means he is alive and isn't having to have a lifesaving procedure this minute..
What's really happening? His lungs, heart and gut all have problems.. Sure they are common problems in premature babies but that doesn't make it any easier. I know bubs are resilient, but again there is always that moment when something is happening when I think "what if he doesn't pull through this" Everyone says "Think positive" I am trying, but it is easy for other people. They aren't there, they aren't living this.. *Sigh.. I should stop ranting, I have a lot of support which I am grateful for, but in all honesty sometimes I feel like I am telling people what THEY want to hear, simply because I don't want to hear them crap on about how terrible it is and how hard it is.. It isn't black and white, people think he's either good or bad, truth is, he's not ok, but he's not, not ok.. Not sure if anyone will have a clue what I am on about, but that's my vent over... I could crap on about this for days... Time to express :P
ETA: I sound all over the shop when I just read that back.. I don't know how I want people to react.. I just wish my son was born at term with no health issues and I got to take him home...
Saturday, October 29, 2011
Happy 1 month Birthday Jett!! (Day 31)
JETT
Jett has been improving everyday. They haven't made anymore changes to his vent, so as it stands rate is 55, pip is 20 (or 21, I can't remember lol)and oxygen ranges from 27% up to 34% depending on what's happening..
He is looking much better, his tummy is still distended and he still has a bit of fluid, but he is almost back to being himself. He is much more alert and is opening his eyes again. It was awful when he had that much fluid he couldn't even open his eyes..
He is having twice daily blood gases, his sodium is still a bit low, so that is still being added to his TPN.
I missed the surgeons and Drs today when they came around but apparently, they think he has the stricture ( a Dr mentioned (Hirschsprungs disease) they still want to do the contrast imaging but he is still not stable enough yet.. I really need to speak to a Dr more about this because according to Dr Google, children/babies with this condition need surgery :(..
Jett had a lovely wash today and is tolerating being on his tummy :) I am happy for the selfish reason of I want cuddles!!!!! Hopefully within the next few days we can look at cuddles again. He seems to be tolerating being handled a bit better now.. He has such a strong little personality. He is over the books I have been reading him. 2 days in a row now when I have started reading to him he has screwed up his face with the shits and his sats have dropped Lol.. He certainly knows what he does and doesn't like!
MUMMY
I'm the same, plugging along not thinking about my mummy going home.. I have been put back on clexane but only half dose, I'm still on antibiotics, Iron and Vit C, I am having twice weekly reviews at the Obsteric Review centre and will have a scan in about 3wks to see if there is still retained product or not. I am getting a routine slowly but surely, 1 that incorporates sleep expressing and time with Bub..
Jett has been improving everyday. They haven't made anymore changes to his vent, so as it stands rate is 55, pip is 20 (or 21, I can't remember lol)and oxygen ranges from 27% up to 34% depending on what's happening..
He is looking much better, his tummy is still distended and he still has a bit of fluid, but he is almost back to being himself. He is much more alert and is opening his eyes again. It was awful when he had that much fluid he couldn't even open his eyes..
He is having twice daily blood gases, his sodium is still a bit low, so that is still being added to his TPN.
I missed the surgeons and Drs today when they came around but apparently, they think he has the stricture ( a Dr mentioned (Hirschsprungs disease) they still want to do the contrast imaging but he is still not stable enough yet.. I really need to speak to a Dr more about this because according to Dr Google, children/babies with this condition need surgery :(..
Jett had a lovely wash today and is tolerating being on his tummy :) I am happy for the selfish reason of I want cuddles!!!!! Hopefully within the next few days we can look at cuddles again. He seems to be tolerating being handled a bit better now.. He has such a strong little personality. He is over the books I have been reading him. 2 days in a row now when I have started reading to him he has screwed up his face with the shits and his sats have dropped Lol.. He certainly knows what he does and doesn't like!
MUMMY
I'm the same, plugging along not thinking about my mummy going home.. I have been put back on clexane but only half dose, I'm still on antibiotics, Iron and Vit C, I am having twice weekly reviews at the Obsteric Review centre and will have a scan in about 3wks to see if there is still retained product or not. I am getting a routine slowly but surely, 1 that incorporates sleep expressing and time with Bub..
Thursday, October 27, 2011
Day 29
JETT
Jett is doing better today. His tummy is still bloated but an x ray this morning shows no change. He is being treated for NEC (feeds stopped, antibiotics started and free drainage from naso gastric tube) but good news is he doesn't have it yet, and hopefully wont! Bub is heaps better within himself, still puffy but he looks better, is more active and has even been able to be weaned a bit on the vent.. So rate is down to 55 from 60, and oxygen is down to 28% and his saturations are remaining high. :) The surgeons have been hanging around (Get away from my baby!!) but wont be doing anything unless absolutely necessary and at this stage it's not.. The other possibility is Jett has developed a stricture, which as I understand it, is basically a narrowing or tightening of the colon which is causing him to be constipated and not able to pass air as he should be.. This is also common in Prems and apparently treatment is similar to that of NEC minus the antibiotics..
Jett has been passing small bits of meconium though which is a good sign, so again it's just watch and wait. He will have another x ray this arvo..
I also forgot to mention yesterday that he had an albumin transfusion and is having another one today. He has lasix halfway through that. Hopefully his fluid will disappear soon and he will be back to my active alert slim baby!
His platelets have dropped a bit, but not enough yet for a transfusion. They transfuse if the platelets get below 50 and his are still 100 which is still in normal range..
MUMMY
I am better today, happier my babe is more settled and feeling more positive. It is still scary, but things look ok at the moment.
Jett is doing better today. His tummy is still bloated but an x ray this morning shows no change. He is being treated for NEC (feeds stopped, antibiotics started and free drainage from naso gastric tube) but good news is he doesn't have it yet, and hopefully wont! Bub is heaps better within himself, still puffy but he looks better, is more active and has even been able to be weaned a bit on the vent.. So rate is down to 55 from 60, and oxygen is down to 28% and his saturations are remaining high. :) The surgeons have been hanging around (Get away from my baby!!) but wont be doing anything unless absolutely necessary and at this stage it's not.. The other possibility is Jett has developed a stricture, which as I understand it, is basically a narrowing or tightening of the colon which is causing him to be constipated and not able to pass air as he should be.. This is also common in Prems and apparently treatment is similar to that of NEC minus the antibiotics..
Jett has been passing small bits of meconium though which is a good sign, so again it's just watch and wait. He will have another x ray this arvo..
I also forgot to mention yesterday that he had an albumin transfusion and is having another one today. He has lasix halfway through that. Hopefully his fluid will disappear soon and he will be back to my active alert slim baby!
His platelets have dropped a bit, but not enough yet for a transfusion. They transfuse if the platelets get below 50 and his are still 100 which is still in normal range..
MUMMY
I am better today, happier my babe is more settled and feeling more positive. It is still scary, but things look ok at the moment.
Wednesday, October 26, 2011
X Ray update
X ray still looks the same which is a good sign. There is no perforation and he has pooed a bit more. No further x rays til tomorrow unless his abdomen gets worse.
Update
I am on my phone so excuse spelling mistakes.
Mum and I went back to nursery after quiet time and Jett's Dr wanted to speak with me. She explained the contrast x ray had been cancelled as she didn't feel he would tolerate it. She took us into a room to show us the x rays and explain what she thought was happening. *Deep breath* it's possible ,Jett could develop NEC. She said the next 24 to 48 will tell. He is having an x ray soon and they are looking for changes, particularly a perforation in his bowel. We are praying this doesn't happen. ,NEC is life threatening and we naturally want to avoid him going to surgery. So more waiting, more tears. I didn't want to cry today but here I am. Jett's stomach is distended and rock hard. Please pray to whoever you believe in. My baby doesn't deserve this, he has to be ok. He just has to be.
Mum and I went back to nursery after quiet time and Jett's Dr wanted to speak with me. She explained the contrast x ray had been cancelled as she didn't feel he would tolerate it. She took us into a room to show us the x rays and explain what she thought was happening. *Deep breath* it's possible ,Jett could develop NEC. She said the next 24 to 48 will tell. He is having an x ray soon and they are looking for changes, particularly a perforation in his bowel. We are praying this doesn't happen. ,NEC is life threatening and we naturally want to avoid him going to surgery. So more waiting, more tears. I didn't want to cry today but here I am. Jett's stomach is distended and rock hard. Please pray to whoever you believe in. My baby doesn't deserve this, he has to be ok. He just has to be.
Day 27 & 28 - What a rollercoaster...
JETT - (Yesterday, day 27)
This post will be all over the shop as I try to recall all the events as accurately as possible...
Yesterday was day 27 and what an awful day.. It started when I called the nursery at 4am. I was told he had been unsettled and had to be bagged. His oxygen was increased to 65%, but he was settled at time of call.. My next phone call 2hrs later also brought scary news, his carbon dioxide was in the 90's so his rate and pressures on his ventilation had to be increased. His rate went to 60 and his pressure (PIP) was increased to 24. I was at the hospital soon after. He had to have a drip put in and an arterial line again.. It was so hard watching all these things happening to my son. He's so tiny, so fragile..
The nurses also did blood cultures as they suspected infection. He had a chest xray which showed an enlarged heart and patches of lung collapse :(.. He was given antibiotics just in case, and also lasix as he was becoming very puffy. Jett also had an echo, as they were a little bit concerned about the duct in his heart..(all I heard about that is it's still moderate, so they are not treating it at this stage)
His HB was low (90) so was also given a blood transfusion.
It is looking like Jett will need steroids to get off the ventilation, but that can't be started until infection is definitely ruled out..
Then at 8pm I was up having dinner and got a phone call advising me they were doing an abdominal x ray as Jett had started aspirating bile and his tummy was more distended.. The x ray showed air, and the repeat one 2hrs later showed the same. Good sign, not much had changed but still very scary.. Feeds had been stopped earlier to give his body a break and have not been restarted as yet..
Jett also slowed down with his weeing, so we were told he may need a catheter! Luckily though, he picked up and it wasn't needed.
During all this, I was a wreck, terrified he had an infection, and really scared as I watched the ventilator keep him alive.. Where he had previously been triggering breaths, yesterday he wasn't at all.. Very very scary..
It seemed like yesterday his whole body was giving out, heart, lungs, bowel, possible infections... It was the 1st time since his birth I thought he may not make it. :(
Today (Day 28)
Today he is a bit better. He pooed 3 times overnight which was a good sign his gut was starting to work. His blood cultures are still negative which is a great sign and although his rate on his vent has stayed the same, his carbon dioxide was only 55.9 on his last gas so his PIP has come down to 21 and his oxygen is sitting around 36%..
Dr D is still concerned about the distention and air in his tummy. He had a repeat x ray and they have decided to take him for contrast imaging. It is being organised for today,he will be transported to another floor. Although I wish it didn't need to be done, it is a good sign that Dr D thinks he is stable enough for him to be transported.. I'm waiting for the call while I am writing this, so I will be there with him.. The other good news is it doesn't look like his bowel is perforated, so no reason for surgery..
He is still extremely puffy, so had more lasix this morning.. He is looking unwell, his face so swollen he can barely open his eyes. This is so scary..
MUMMY
I am feeling a bit better today. Yesterday was spent in tears. It was so scary and knowing my Son is going through all this is just so hard. It is such an unfair world.. My baby is suffering so much. He is such a brave boy though, and I try to be there with him as much as I can.. I feel so guilty that my body couldn't carry him to term..
I felt so sick yesterday I could barely eat and although I was pumping every 2hrs I was getting hardly anything. Today is better though thank god. Although he isn't feeding, I can't lose this supply..
I was really scared he had NEC which is a condition in prems. It's basically where parts of the bowel die and Can be accompanied by an infection. Bubs can die very quickly and in all honesty yesterday was the 1st time I really thought he may not survive. It was the scariest thought, and at the same time I felt guilty for even thinking it.. I have had so much faith in this baby during my pregnancy and during the last few weeks, to even lose that faith for a second felt awful..
We have lots of people praying for him though, as well as some very special Angels watching over him and it must be working because he is better today.. Not out of the woods, he is still a very sick little baby, but he appears to be improving, if only a little bit..
Mummy has her faith back, and knows my brave boy can do this.. We can do this.. Jett will be coming home..
I am currently waiting for the call to go with him for the contrast imaging.. Oh and I changed my 1st pooey nappy today!! Great news he is pooing but he still needs the contrast imaging :( Keep that gut working little man! We need him to be stable so we can have cuddles again!!
This post will be all over the shop as I try to recall all the events as accurately as possible...
Yesterday was day 27 and what an awful day.. It started when I called the nursery at 4am. I was told he had been unsettled and had to be bagged. His oxygen was increased to 65%, but he was settled at time of call.. My next phone call 2hrs later also brought scary news, his carbon dioxide was in the 90's so his rate and pressures on his ventilation had to be increased. His rate went to 60 and his pressure (PIP) was increased to 24. I was at the hospital soon after. He had to have a drip put in and an arterial line again.. It was so hard watching all these things happening to my son. He's so tiny, so fragile..
The nurses also did blood cultures as they suspected infection. He had a chest xray which showed an enlarged heart and patches of lung collapse :(.. He was given antibiotics just in case, and also lasix as he was becoming very puffy. Jett also had an echo, as they were a little bit concerned about the duct in his heart..(all I heard about that is it's still moderate, so they are not treating it at this stage)
His HB was low (90) so was also given a blood transfusion.
It is looking like Jett will need steroids to get off the ventilation, but that can't be started until infection is definitely ruled out..
Then at 8pm I was up having dinner and got a phone call advising me they were doing an abdominal x ray as Jett had started aspirating bile and his tummy was more distended.. The x ray showed air, and the repeat one 2hrs later showed the same. Good sign, not much had changed but still very scary.. Feeds had been stopped earlier to give his body a break and have not been restarted as yet..
Jett also slowed down with his weeing, so we were told he may need a catheter! Luckily though, he picked up and it wasn't needed.
During all this, I was a wreck, terrified he had an infection, and really scared as I watched the ventilator keep him alive.. Where he had previously been triggering breaths, yesterday he wasn't at all.. Very very scary..
It seemed like yesterday his whole body was giving out, heart, lungs, bowel, possible infections... It was the 1st time since his birth I thought he may not make it. :(
Today (Day 28)
Today he is a bit better. He pooed 3 times overnight which was a good sign his gut was starting to work. His blood cultures are still negative which is a great sign and although his rate on his vent has stayed the same, his carbon dioxide was only 55.9 on his last gas so his PIP has come down to 21 and his oxygen is sitting around 36%..
Dr D is still concerned about the distention and air in his tummy. He had a repeat x ray and they have decided to take him for contrast imaging. It is being organised for today,he will be transported to another floor. Although I wish it didn't need to be done, it is a good sign that Dr D thinks he is stable enough for him to be transported.. I'm waiting for the call while I am writing this, so I will be there with him.. The other good news is it doesn't look like his bowel is perforated, so no reason for surgery..
He is still extremely puffy, so had more lasix this morning.. He is looking unwell, his face so swollen he can barely open his eyes. This is so scary..
MUMMY
I am feeling a bit better today. Yesterday was spent in tears. It was so scary and knowing my Son is going through all this is just so hard. It is such an unfair world.. My baby is suffering so much. He is such a brave boy though, and I try to be there with him as much as I can.. I feel so guilty that my body couldn't carry him to term..
I felt so sick yesterday I could barely eat and although I was pumping every 2hrs I was getting hardly anything. Today is better though thank god. Although he isn't feeding, I can't lose this supply..
I was really scared he had NEC which is a condition in prems. It's basically where parts of the bowel die and Can be accompanied by an infection. Bubs can die very quickly and in all honesty yesterday was the 1st time I really thought he may not survive. It was the scariest thought, and at the same time I felt guilty for even thinking it.. I have had so much faith in this baby during my pregnancy and during the last few weeks, to even lose that faith for a second felt awful..
We have lots of people praying for him though, as well as some very special Angels watching over him and it must be working because he is better today.. Not out of the woods, he is still a very sick little baby, but he appears to be improving, if only a little bit..
Mummy has her faith back, and knows my brave boy can do this.. We can do this.. Jett will be coming home..
I am currently waiting for the call to go with him for the contrast imaging.. Oh and I changed my 1st pooey nappy today!! Great news he is pooing but he still needs the contrast imaging :( Keep that gut working little man! We need him to be stable so we can have cuddles again!!
Monday, October 24, 2011
Days 24, 25 & 26!! Catch up!
JETT
Well some changes have occurred, bub has had another wash and weigh and now weighs 1196gms! The Dr did his Head Circumference and length for me last night. His HC is 26.2cms and his length is 36cms :) I would love to know how long he was born and how much he has grown..
Bub had thyroid and liver function tests the other day. (not sure if I mentioned that last post?) They came back normal. The reason they were done was because he is still jaundiced, it's from the TPN (Total Parenteral Nutrition), but they wanted to rule out any further problems so did the blood test early..
His ventilation has been increased. The rate was increased from 30 to 40, then 40 to 50 and his Peep was increased from 17 to 18.. It's possibly from the duct in his heart but more likely from his Chronic Lung Disease. His little lungs got off to a very bad start. Jett's Dr may consider the steroids again to get him off the ventilator. It's something I have to discuss with her. She hasn't been here over the weekend. He is still desatting, but she is happy not to change anything unless carbon dioxide goes over 65. His ventilation will be weaned if it's under 55.
Saturday was cuddle day, as was today!!! Saturday's cuddle was in the morning, but I only got 2hrs because I ended up busting for the loo.. I held on for as long as I could. I was so pissed off I had to put him in bed so I could wee! Lol. It's not as if I can just get him back out though. Once he's in he's in :( Luckily though today I had a arvo cuddle. I had a decent lunch and not a lot to drink before it, so had him from after his cares at 4.30 til 9.15pm!!! Nearly 5hrs.. I managed to get a sleep myself. It feels so good having my babe against me. I love our skin to skin time, I am loving getting regular cuddles :)
His feeds went up to 3ml today.. He still hasn't pooed though since he had the microlax which was ages ago. Dr isn't too concerned because he isn't having much food, but it would be good if he did. He has a lazy gut by the looks of it. He isn't aspirating bile though, though hopefully his gut will get going soon..
I think that's it for the Lil Jett Plane updates!
MUMMY
Not much to say, now that my Mum is here I am feeling good. I don't want her to leave again. She is such a great help. This morning she went and sat with Jett so I could sleep in a bit and Saturday night I went home for the night. It was ok, I didn't really relax. It was hard to leave the next morning, just rubbed in my face that this isn't how things should be.. But they are. I am having visitors again now, not so shut off from the world now I am feeling better. I have had someone drop some more meals off for me (Thanks Dory) and friends took me to Chermside shopping centre yesterday to get some things. I had a good time, we had some laughs and they came and saw Jett after. I haven't had anymore hemorrhages and hopefully I wont.. I am still exhausted, but I guess that's all part of motherhood, I think it's just exacerbated by having a bub in NICU.. He is doing pretty well though. I'm so proud of my snuggy bubby :)
Well some changes have occurred, bub has had another wash and weigh and now weighs 1196gms! The Dr did his Head Circumference and length for me last night. His HC is 26.2cms and his length is 36cms :) I would love to know how long he was born and how much he has grown..
Bub had thyroid and liver function tests the other day. (not sure if I mentioned that last post?) They came back normal. The reason they were done was because he is still jaundiced, it's from the TPN (Total Parenteral Nutrition), but they wanted to rule out any further problems so did the blood test early..
His ventilation has been increased. The rate was increased from 30 to 40, then 40 to 50 and his Peep was increased from 17 to 18.. It's possibly from the duct in his heart but more likely from his Chronic Lung Disease. His little lungs got off to a very bad start. Jett's Dr may consider the steroids again to get him off the ventilator. It's something I have to discuss with her. She hasn't been here over the weekend. He is still desatting, but she is happy not to change anything unless carbon dioxide goes over 65. His ventilation will be weaned if it's under 55.
Saturday was cuddle day, as was today!!! Saturday's cuddle was in the morning, but I only got 2hrs because I ended up busting for the loo.. I held on for as long as I could. I was so pissed off I had to put him in bed so I could wee! Lol. It's not as if I can just get him back out though. Once he's in he's in :( Luckily though today I had a arvo cuddle. I had a decent lunch and not a lot to drink before it, so had him from after his cares at 4.30 til 9.15pm!!! Nearly 5hrs.. I managed to get a sleep myself. It feels so good having my babe against me. I love our skin to skin time, I am loving getting regular cuddles :)
His feeds went up to 3ml today.. He still hasn't pooed though since he had the microlax which was ages ago. Dr isn't too concerned because he isn't having much food, but it would be good if he did. He has a lazy gut by the looks of it. He isn't aspirating bile though, though hopefully his gut will get going soon..
I think that's it for the Lil Jett Plane updates!
MUMMY
Not much to say, now that my Mum is here I am feeling good. I don't want her to leave again. She is such a great help. This morning she went and sat with Jett so I could sleep in a bit and Saturday night I went home for the night. It was ok, I didn't really relax. It was hard to leave the next morning, just rubbed in my face that this isn't how things should be.. But they are. I am having visitors again now, not so shut off from the world now I am feeling better. I have had someone drop some more meals off for me (Thanks Dory) and friends took me to Chermside shopping centre yesterday to get some things. I had a good time, we had some laughs and they came and saw Jett after. I haven't had anymore hemorrhages and hopefully I wont.. I am still exhausted, but I guess that's all part of motherhood, I think it's just exacerbated by having a bub in NICU.. He is doing pretty well though. I'm so proud of my snuggy bubby :)
Saturday, October 22, 2011
Day 23 - Wash and weigh day :)
JETT
Today Jett was washed and weighed today.. He seems to be getting used to his baths, he didn't screw his little face up quite as much today and his saturations remained fairly good throughout, although his oxygen support was increased to 30% from 26% (from memory).. My little fatty weighs 1126gms or 2.4lbs :).. I am a bit worried he is getting fluid retention again as his tummy and hands looked a bit puffy today. He has gone back up to 2ml feeds, but his aspirate was a bit greener today than yesterday, but Dr D still wants to push on with the feeds and hopefully get this gut working as it should. He still hasn't pooed since he had the microlax, so we are hoping he does soon, or he may have to have another one :(.. His NG tube and tape was changed tonight, Mama hates watching that. It's painful for him getting the tape off his face, even though the nurses are gentle as they can be, the tape is so sticky and his skin is fragile..
Jett has started having bradycardias (bradys for short)it freaks me out a bit, but I know it's something I'll get used to.. I watched the twins have a few in their short life..
Apart from that, not much has changed, ventilation staying the same for now. His sodium was a bit low yesterday, so he had some extra sodium and they are just watching it now..
MUMMY
So, apparently the MRI showed retained product in my uterus. I am on anti biotics for 4wks, and twice weekly check ups. The Drs don't want to give me a D&C, which is good. The bad thing is, I may keep having bleeds. I had a small hemorrhage tonight, but it was in the toilet, so I didn't soak through my clothes. I will also have a follow up ultrasound in 4wks.. One of Jetts nurses was telling me tonight about a natural remedy to get rid of retained product was apparently tea tree oil vapourised.. I may as well give it a go..
I saw a psychologist today. I will be seeing her weekly. She is nice, I just talked and vented a lot of my 'issues'.
Mum arrived today, so I am taking the big step and going home tomorrow night while Mum 'babysits' Jett. I know she will sit with him and read him his bed time story. I also know she will call me if I am needed, so hopefully I can relax and enjoy my own bed for a night.. I am so glad she is here.. All is ok with the world for now. Mummy's fix everything.. Well, not always. I wish could fix everything for my babe.. At least I am there holding his hand.
It was a sad day today. We had a couple of baby losses :( I wont go into any details, but I had seen the Mums around and spoken to them briefly. It was sad to hear of their babies passing. I haven't seen either of them since. I wish I could give them a hug. I wish they didn't have to go through it. I'm very very sad for them. I just hope and pray they have the support to help them through this horrible time.
That's it for me, time to sleep. Jett was tucked up sound asleep when I left.. Have I mentioned I love him so much and think he is sooo CUTE!! Lol
Today Jett was washed and weighed today.. He seems to be getting used to his baths, he didn't screw his little face up quite as much today and his saturations remained fairly good throughout, although his oxygen support was increased to 30% from 26% (from memory).. My little fatty weighs 1126gms or 2.4lbs :).. I am a bit worried he is getting fluid retention again as his tummy and hands looked a bit puffy today. He has gone back up to 2ml feeds, but his aspirate was a bit greener today than yesterday, but Dr D still wants to push on with the feeds and hopefully get this gut working as it should. He still hasn't pooed since he had the microlax, so we are hoping he does soon, or he may have to have another one :(.. His NG tube and tape was changed tonight, Mama hates watching that. It's painful for him getting the tape off his face, even though the nurses are gentle as they can be, the tape is so sticky and his skin is fragile..
Jett has started having bradycardias (bradys for short)it freaks me out a bit, but I know it's something I'll get used to.. I watched the twins have a few in their short life..
Apart from that, not much has changed, ventilation staying the same for now. His sodium was a bit low yesterday, so he had some extra sodium and they are just watching it now..
MUMMY
So, apparently the MRI showed retained product in my uterus. I am on anti biotics for 4wks, and twice weekly check ups. The Drs don't want to give me a D&C, which is good. The bad thing is, I may keep having bleeds. I had a small hemorrhage tonight, but it was in the toilet, so I didn't soak through my clothes. I will also have a follow up ultrasound in 4wks.. One of Jetts nurses was telling me tonight about a natural remedy to get rid of retained product was apparently tea tree oil vapourised.. I may as well give it a go..
I saw a psychologist today. I will be seeing her weekly. She is nice, I just talked and vented a lot of my 'issues'.
Mum arrived today, so I am taking the big step and going home tomorrow night while Mum 'babysits' Jett. I know she will sit with him and read him his bed time story. I also know she will call me if I am needed, so hopefully I can relax and enjoy my own bed for a night.. I am so glad she is here.. All is ok with the world for now. Mummy's fix everything.. Well, not always. I wish could fix everything for my babe.. At least I am there holding his hand.
It was a sad day today. We had a couple of baby losses :( I wont go into any details, but I had seen the Mums around and spoken to them briefly. It was sad to hear of their babies passing. I haven't seen either of them since. I wish I could give them a hug. I wish they didn't have to go through it. I'm very very sad for them. I just hope and pray they have the support to help them through this horrible time.
That's it for me, time to sleep. Jett was tucked up sound asleep when I left.. Have I mentioned I love him so much and think he is sooo CUTE!! Lol
Friday, October 21, 2011
Day 22 - Cuddle day!
JETT
Again no news is good news.. No changes to his ventilation, still needs oxygen support sometimes during cares repositions etc. He was tried on 2ml feeds today, but they went back down to 1ml as he was having lots of aspirate. It wasn't bile, just milky, but they didn't want to push him.. He was weighed yesterday and now weighs 1050gms! He got a blue star with 1kg on it :) Yay for my chubba Bubba!
WE HAD CUDDLES TODAY.. 4hrs of beautiful skin to skin! He didn't handle getting out of the cot well, he had bradycardias (drop in heart rate) and oxygen dropped, but once he was settled on Mama he stayed there very happy and his oxygen was able to be turned down again. Mama slept, Jett slept, it was so relaxing and we had a beautiful nurse. Actually both shifts were amazing nurses :)I read him a story after it and left him feeling very peaceful..
MUMMY
I had another bleed this morning, long story short, yesterday arvo I had a scan which showed clots in my uterus, today I was sent for an MRI and although we haven't got the official report yet, it looks like it's retained product, which will mean a D & C... Not happy, but I can't keep hemorraging, so I'll just have to deal with it. I see a registrar tomorrow for the official report and action plan. My Mum is coming up to be with me, thank god.. At least Jett wont be by himself while I am recovering. Also I might be able to catch up on some sleep while Mum sits with Jett. Speaking of sleep, that's what I'm about to do. Jett has another wash and weigh tomorrow. I hope I am there and not getting prepped for theatre :(
I got my new breast pump today, it's great!! Shame I have to dump my milk because of the contrast they used for the MRI.. I hate pumping then watching all that hard work got to waste!! Oh well after midday, I can keep it again.. :)
Again no news is good news.. No changes to his ventilation, still needs oxygen support sometimes during cares repositions etc. He was tried on 2ml feeds today, but they went back down to 1ml as he was having lots of aspirate. It wasn't bile, just milky, but they didn't want to push him.. He was weighed yesterday and now weighs 1050gms! He got a blue star with 1kg on it :) Yay for my chubba Bubba!
WE HAD CUDDLES TODAY.. 4hrs of beautiful skin to skin! He didn't handle getting out of the cot well, he had bradycardias (drop in heart rate) and oxygen dropped, but once he was settled on Mama he stayed there very happy and his oxygen was able to be turned down again. Mama slept, Jett slept, it was so relaxing and we had a beautiful nurse. Actually both shifts were amazing nurses :)I read him a story after it and left him feeling very peaceful..
MUMMY
I had another bleed this morning, long story short, yesterday arvo I had a scan which showed clots in my uterus, today I was sent for an MRI and although we haven't got the official report yet, it looks like it's retained product, which will mean a D & C... Not happy, but I can't keep hemorraging, so I'll just have to deal with it. I see a registrar tomorrow for the official report and action plan. My Mum is coming up to be with me, thank god.. At least Jett wont be by himself while I am recovering. Also I might be able to catch up on some sleep while Mum sits with Jett. Speaking of sleep, that's what I'm about to do. Jett has another wash and weigh tomorrow. I hope I am there and not getting prepped for theatre :(
I got my new breast pump today, it's great!! Shame I have to dump my milk because of the contrast they used for the MRI.. I hate pumping then watching all that hard work got to waste!! Oh well after midday, I can keep it again.. :)
Wednesday, October 19, 2011
Day 21
JETT
No news is good news, he is much the same, occasionally needing extra oxygen for handling etc, but stable. Still on mama's milk, 1ml every 3hrs. Some milky aspirate, but nothing concerning. He is one line less again today, his cannula tissued this morning, but they don't need to replace it at this stage..
MUMMY
Feels like shit, is tired and frustrated. I have a note on Jett's cot stating that I must be present for cares. Today we have a nurse we haven't had before, so she phones me at 8, telling me Jett's cares will be at 10. Fine, I will be there. I organise to put washing on (I had my blood soaked clothes from last night to wash) then started expressing. During my expressing, the nuse phones and tell me Jett's cares will be done at 9.. It was quarter to and I knew I couldn't get there. I told her that, and told her I wanted to be there but she said she had to suction him and tend to another baby. I was so pissed off I hung up on her and bawled my eyes out. I finished expressing and went straight to the hospital, no brekky or anything, I just wanted to get there. When I got there she had done Jett's and was doing the other bub.. Then went on a break at 10 past 10... Hmm, I'm thinking that's why she moved the cares up.. Next cares are due at 3, during quiet time, I told her I would be there and conveniently she is going to stretch it to 3.30..
I went out to get the pump to express again and ran into the social worker. As soon as she asked how I was I burst into tears and told her about my scary experience last night, then about the nurse with his cares. She went and spoke to the CNC and reassured me I wasn't over reacting. Cares are very important to me, and I was so pissed off that the nurse wouldn't wait for me. Anyway, hopefully it's sorted now and we don't have her much. Nurses need to realise that although it's routine for them, Jett is MY baby and I need to be able to mother him as much as I can..
I left to have some lunch and a nap, while my bub was passed out on his tummy.. He is just so beautiful. I love him so much!
No news is good news, he is much the same, occasionally needing extra oxygen for handling etc, but stable. Still on mama's milk, 1ml every 3hrs. Some milky aspirate, but nothing concerning. He is one line less again today, his cannula tissued this morning, but they don't need to replace it at this stage..
MUMMY
Feels like shit, is tired and frustrated. I have a note on Jett's cot stating that I must be present for cares. Today we have a nurse we haven't had before, so she phones me at 8, telling me Jett's cares will be at 10. Fine, I will be there. I organise to put washing on (I had my blood soaked clothes from last night to wash) then started expressing. During my expressing, the nuse phones and tell me Jett's cares will be done at 9.. It was quarter to and I knew I couldn't get there. I told her that, and told her I wanted to be there but she said she had to suction him and tend to another baby. I was so pissed off I hung up on her and bawled my eyes out. I finished expressing and went straight to the hospital, no brekky or anything, I just wanted to get there. When I got there she had done Jett's and was doing the other bub.. Then went on a break at 10 past 10... Hmm, I'm thinking that's why she moved the cares up.. Next cares are due at 3, during quiet time, I told her I would be there and conveniently she is going to stretch it to 3.30..
I went out to get the pump to express again and ran into the social worker. As soon as she asked how I was I burst into tears and told her about my scary experience last night, then about the nurse with his cares. She went and spoke to the CNC and reassured me I wasn't over reacting. Cares are very important to me, and I was so pissed off that the nurse wouldn't wait for me. Anyway, hopefully it's sorted now and we don't have her much. Nurses need to realise that although it's routine for them, Jett is MY baby and I need to be able to mother him as much as I can..
I left to have some lunch and a nap, while my bub was passed out on his tummy.. He is just so beautiful. I love him so much!
An update from last night
Baby Jett was fine. We had the best cuddle. He was sound asleep for most of it and Mummy had a nap too.. It was amazing. He didn't desat once! After he was snuggled back in bed blissfully asleep after his 4hr skin to skin cuddle and nappy change, I was planning to go and get some dinner and rest. I had just expressed and was standing next to Bubby's cot when I felt that familiar warmth.. Blood, and lots of it.. I burst into tears and told the nurse I was bleeding, they took me to the staff toilet and got a midwife. I had soaked through a pad, my underwear and the pants I was wearing. I was sitting on the toilet with blood dripping out. I was so scared. When the midwife came, it was the midwife that was at Jett's birth. I was glad because she understood why I was so panicked. The bleeding started to slow and the nurse took me to the obstetric review centre. They did OBs etc, I felt ok, the bleeding was back to normal so they let me go. I am supposed to have a scan but they haven't called me yet.. I was so so scared.. I really wish this bleeding would bugger off!
Tuesday, October 18, 2011
Day 20 - Cuddle day :)
JETT
Jett is doing well :) I forgot to mention yesterday that Daddy surprised us by coming to visit with Jett's big brother.. they didn't stay long, but it was good Jacob got to see Jett again :) I also forgot to mention yesterday that they started him on caffeine, just as a stimulant to prepare for going off ventilation. He is now off all blood pressure meds. All he is on now is the caffeine, lipids and TPN!! Oh and nilstat in his mouth and nappy and bactroban for his neck..
Last night he had his arterial line removed which is great, but not the way it happened.. The nurse was taking a blood sample out of the line and his artery spasmed cutting off the blood supply to his fingers! His fingers had no colour, it was scary. They got the line out though and didn't have to replace it!! Great news! He is only having a blood gas once a day now and that is from a heel prick. I was there at 6 this morning so I could hold his hand for his first heel prick ever and he didn't even flinch. My brave boy! I was more scared than he was...
He had his NG tube changed today (I think it's every 4 days) and Mummy was there holding his hand. It's so hard to watch, but the nurses are really experienced and quick. It must be so uncomfortable though :(.. He is still feeding, he is having milky aspirate, but nothing enough to stop feeds again, so my lil Man, will fatten up more in no time!
He is settled on his tummy now, so he is coming out for a cuddle this afternoon :) He has been desating a bit, but is pretty good, so I'm hoping he will love his cuddle like he did the first one.. Mummy will try and have a sleep, that will be so nice..
MUMMY
Mummy feels much better today. Still get upset watching my boy go through so much, but I am ok. I am grateful for my baby and grateful he wont remember this time in his life. (I will probably need therapy for the rest of my life lol).. I am trying to practise attachment parenting as much as I can in this environment and I am there with him as much as I physically and mentally can be. I can't wait to have skin on skin later!! :)
I was supposed to see a counsellor tomorrow and she cancelled.. The appointment hasn't been rescheduled yet, as they are not sure when she will be back.. Oh well, I have lots of people to talk to if I need to, I just don't want to right now.. Still not up to visitors from the outside world, but I'm sure I'll be ok again soon.
I am keeping an eye on my milk supply as I have stopped taking fenugreek, as apparently it can affect Bub's blood sugar. The Lactation Consultant said I could speak to Dr D about taking it if I really need it, but I have stopped it for the moment, I don't want to upset anything when Jett's just started back on feeds. I am still expressing 2-3 hourly, so I hope my supply is still ok..
Jett is doing well :) I forgot to mention yesterday that Daddy surprised us by coming to visit with Jett's big brother.. they didn't stay long, but it was good Jacob got to see Jett again :) I also forgot to mention yesterday that they started him on caffeine, just as a stimulant to prepare for going off ventilation. He is now off all blood pressure meds. All he is on now is the caffeine, lipids and TPN!! Oh and nilstat in his mouth and nappy and bactroban for his neck..
Last night he had his arterial line removed which is great, but not the way it happened.. The nurse was taking a blood sample out of the line and his artery spasmed cutting off the blood supply to his fingers! His fingers had no colour, it was scary. They got the line out though and didn't have to replace it!! Great news! He is only having a blood gas once a day now and that is from a heel prick. I was there at 6 this morning so I could hold his hand for his first heel prick ever and he didn't even flinch. My brave boy! I was more scared than he was...
He had his NG tube changed today (I think it's every 4 days) and Mummy was there holding his hand. It's so hard to watch, but the nurses are really experienced and quick. It must be so uncomfortable though :(.. He is still feeding, he is having milky aspirate, but nothing enough to stop feeds again, so my lil Man, will fatten up more in no time!
He is settled on his tummy now, so he is coming out for a cuddle this afternoon :) He has been desating a bit, but is pretty good, so I'm hoping he will love his cuddle like he did the first one.. Mummy will try and have a sleep, that will be so nice..
MUMMY
Mummy feels much better today. Still get upset watching my boy go through so much, but I am ok. I am grateful for my baby and grateful he wont remember this time in his life. (I will probably need therapy for the rest of my life lol).. I am trying to practise attachment parenting as much as I can in this environment and I am there with him as much as I physically and mentally can be. I can't wait to have skin on skin later!! :)
I was supposed to see a counsellor tomorrow and she cancelled.. The appointment hasn't been rescheduled yet, as they are not sure when she will be back.. Oh well, I have lots of people to talk to if I need to, I just don't want to right now.. Still not up to visitors from the outside world, but I'm sure I'll be ok again soon.
I am keeping an eye on my milk supply as I have stopped taking fenugreek, as apparently it can affect Bub's blood sugar. The Lactation Consultant said I could speak to Dr D about taking it if I really need it, but I have stopped it for the moment, I don't want to upset anything when Jett's just started back on feeds. I am still expressing 2-3 hourly, so I hope my supply is still ok..
Monday, October 17, 2011
Day 19..
JETT
So Bub has been needing some oxygen support today, but not too much, he has been fairly settled. He has started back on Mama's milk, 1ml every 3 hours :).. Dr D said she wasn't going to start him on steroids, she is happy with his ventilation and she is hoping to wean him off without steroids. It may take a little longer, but that's ok. Bub had an echo today, the PDA is measuring 1.7mm, Dr D said it is bigger than the last echo showed, but at the moment she is not giving him a second course of meds to close it, because they can affect his gut. She felt it was more important to start back on feeds than give him meds, when at the moment the PDA isn't really a concern. So all good news, except for the desating.. My baby looks so beautiful, better every day. His neck is almost healed, he is still having bactroban applied, but no kaltostat anymore :.. Mama gave him a sponge bath this morning and he got weighed. Considering he had lasix and has gotten rid of all his fluid, it is a true weight and he weighed.. 976gms!!! Almost at the kilo! His head circumference was done the other day, I keep forgetting to mention it.. His head was a bit fluidy, so although he measured 26cm, they said it could be a bit smaller.. 24 25 maybe.. His head is so CUTE!! It's returning back to a normal shape now the fluid has gone :)
MUMMY
Although Jett's going well, it was one of those days for Mummy. No phone calls, visits or texts, I just couldn't face it. I can do this though, Jett and I can do this. It will all be worth it when he comes home.
I am thinking of coming home for a night this week if Jett is stable enough. Maybe Wednesday I'll go home after his night cares are done at about 9 or 10 then come back up 1st thing in the morning. It will be hard to leave, I cry every night when I leave and I'm only 2 seconds away, but I am so so homesick, I think being away from here, sleeping in my own bed will help my emotional state and give me the sleep and energy I need to keep going.. I'll be gone no more than 12hrs.. Oh God, I feel guilty even considering it.. Fuck this is hard.. 1 day at a time.. I love my baby. I am so glad he is here. I feel like such a sook. I want him to be here, I love him. This situation could be worse.. I could not have him at all and that is my worst nightmare. I have to snap out of this. I love you Jett, we can do this.. I need strength. I feel like I'm losing my strength. I can do this, Jett and I can do this... This is one situation where the power of a Mothers love will win..
So Bub has been needing some oxygen support today, but not too much, he has been fairly settled. He has started back on Mama's milk, 1ml every 3 hours :).. Dr D said she wasn't going to start him on steroids, she is happy with his ventilation and she is hoping to wean him off without steroids. It may take a little longer, but that's ok. Bub had an echo today, the PDA is measuring 1.7mm, Dr D said it is bigger than the last echo showed, but at the moment she is not giving him a second course of meds to close it, because they can affect his gut. She felt it was more important to start back on feeds than give him meds, when at the moment the PDA isn't really a concern. So all good news, except for the desating.. My baby looks so beautiful, better every day. His neck is almost healed, he is still having bactroban applied, but no kaltostat anymore :.. Mama gave him a sponge bath this morning and he got weighed. Considering he had lasix and has gotten rid of all his fluid, it is a true weight and he weighed.. 976gms!!! Almost at the kilo! His head circumference was done the other day, I keep forgetting to mention it.. His head was a bit fluidy, so although he measured 26cm, they said it could be a bit smaller.. 24 25 maybe.. His head is so CUTE!! It's returning back to a normal shape now the fluid has gone :)
MUMMY
Although Jett's going well, it was one of those days for Mummy. No phone calls, visits or texts, I just couldn't face it. I can do this though, Jett and I can do this. It will all be worth it when he comes home.
I am thinking of coming home for a night this week if Jett is stable enough. Maybe Wednesday I'll go home after his night cares are done at about 9 or 10 then come back up 1st thing in the morning. It will be hard to leave, I cry every night when I leave and I'm only 2 seconds away, but I am so so homesick, I think being away from here, sleeping in my own bed will help my emotional state and give me the sleep and energy I need to keep going.. I'll be gone no more than 12hrs.. Oh God, I feel guilty even considering it.. Fuck this is hard.. 1 day at a time.. I love my baby. I am so glad he is here. I feel like such a sook. I want him to be here, I love him. This situation could be worse.. I could not have him at all and that is my worst nightmare. I have to snap out of this. I love you Jett, we can do this.. I need strength. I feel like I'm losing my strength. I can do this, Jett and I can do this... This is one situation where the power of a Mothers love will win..
Sunday, October 16, 2011
Day 18 - Mummy got another cuddle!
JETT
It's been a big few days for our lil Jett Plane, and it showed today.. Mummy had a cuddle, but he didn't handle it too well. I was reclined back and he wasn't liking it, with his oxygen dropping down to as low as 69% :(... The nurses wanted to put him in his cot, but when they sat me up, he came good again. Between a change of position, his oxygen pumped up & some suction of his lung secretions he was ok for a bit, but then it started again. His cot got changed and in it he went. He became more settled then I left for quiet time..
When I arrived back, he was positioned on his tummy. He had both arms by his sides and he didn't like it.. His Sats were dropping and he was wriggling a lot. He looked uncomfortable and his saturations suggested that too. I repositioned his arm, but it was still uncomfortable for him, so the nurse and I did his cares and put him on his back where he seemed pretty comfortable. He has been ok since, but still desating (which means oxygen drops) quite a bit :( His blood gases are only done 12th hourly now, and his last gas showed his carbon dioxide was high at 66, when it should be around 35 - 45, so they turned his breath rate up to 35 on his ventilation..
I hope he was just having a shitty day and he is better tomorrow. He still opened his eyes for Nanny and Poppy and also my friend Jasmine who came to visit.
When I left tonight, after reading him his bedtime story, he was asleep and settled.
MUMMY
*Sigh* Where do I start? I am feeling sad today. It was really heartbreaking seeing him desat so much when I was holding him :(.. He belongs with me, but is too fragile to handle it. That's really hard :(.. Now he opens his eyes and is so aware, it makes it really hard to leave him at night.. I absolutely HATE the thought of him waking up and I'm not there :(.. Truth is, I can't be there 24hrs a day. I want to be, but, I need to rest, write my blog (otherwise I will forget what the days events are) and eat.. I am seeing a counsellor on Wednesday. I have no idea where to start. The trauma of my birth? The trauma of having a premmie? The feelings of helplessness and failure? The feeling of loneliness being up here, living away from my home, partner and pets? Fuck, we only have an hour!
Feeling crap tonight. I wish things were different. I know there's no point even saying it, nothing is going to change anything, and I am so grateful to have Jett alive, doing reasonably well, but I can't help thinking what I have missed out on.. The whole 3rd trimester of pregnancy, my maternity shots but mostly, just being a normal mother. Birthing my baby and taking him home. I know it's just time. I know he'll come home and I can mother him all I want, but this is just so fucking hard right now. He's going through so much, all because my body failed.. Again. It already failed Taite and Seth. I couldn't be at a memorial service today to honour Taite and Seth, because I was here. I should have been 28wks pregnant with Jett safely tucked up inside..
I am so happy my baby is alive, but I just wish I was still pregnant. :( Just had to get all that out. Maybe tomorrow will be a better day for both Mama and li Jett.?? I hope so..
It's been a big few days for our lil Jett Plane, and it showed today.. Mummy had a cuddle, but he didn't handle it too well. I was reclined back and he wasn't liking it, with his oxygen dropping down to as low as 69% :(... The nurses wanted to put him in his cot, but when they sat me up, he came good again. Between a change of position, his oxygen pumped up & some suction of his lung secretions he was ok for a bit, but then it started again. His cot got changed and in it he went. He became more settled then I left for quiet time..
When I arrived back, he was positioned on his tummy. He had both arms by his sides and he didn't like it.. His Sats were dropping and he was wriggling a lot. He looked uncomfortable and his saturations suggested that too. I repositioned his arm, but it was still uncomfortable for him, so the nurse and I did his cares and put him on his back where he seemed pretty comfortable. He has been ok since, but still desating (which means oxygen drops) quite a bit :( His blood gases are only done 12th hourly now, and his last gas showed his carbon dioxide was high at 66, when it should be around 35 - 45, so they turned his breath rate up to 35 on his ventilation..
I hope he was just having a shitty day and he is better tomorrow. He still opened his eyes for Nanny and Poppy and also my friend Jasmine who came to visit.
When I left tonight, after reading him his bedtime story, he was asleep and settled.
MUMMY
*Sigh* Where do I start? I am feeling sad today. It was really heartbreaking seeing him desat so much when I was holding him :(.. He belongs with me, but is too fragile to handle it. That's really hard :(.. Now he opens his eyes and is so aware, it makes it really hard to leave him at night.. I absolutely HATE the thought of him waking up and I'm not there :(.. Truth is, I can't be there 24hrs a day. I want to be, but, I need to rest, write my blog (otherwise I will forget what the days events are) and eat.. I am seeing a counsellor on Wednesday. I have no idea where to start. The trauma of my birth? The trauma of having a premmie? The feelings of helplessness and failure? The feeling of loneliness being up here, living away from my home, partner and pets? Fuck, we only have an hour!
Feeling crap tonight. I wish things were different. I know there's no point even saying it, nothing is going to change anything, and I am so grateful to have Jett alive, doing reasonably well, but I can't help thinking what I have missed out on.. The whole 3rd trimester of pregnancy, my maternity shots but mostly, just being a normal mother. Birthing my baby and taking him home. I know it's just time. I know he'll come home and I can mother him all I want, but this is just so fucking hard right now. He's going through so much, all because my body failed.. Again. It already failed Taite and Seth. I couldn't be at a memorial service today to honour Taite and Seth, because I was here. I should have been 28wks pregnant with Jett safely tucked up inside..
I am so happy my baby is alive, but I just wish I was still pregnant. :( Just had to get all that out. Maybe tomorrow will be a better day for both Mama and li Jett.?? I hope so..
Saturday, October 15, 2011
Day 17 - Eyes are open!!
Jett
Today was so special! I got there for his cares this morning to be told he will be having a wash and weigh :)During his sponge bath, he opened BOTH his eyes completely!! We had great eye contact! The nurse managed to get some pictures to put on his disc, but I am yet to get a pic, every time I went to take one he'd close them, or only open 1 eye lol.. After his weigh he had the phototherapy lights on, but when I go back this arvo, I'll take the light off for half hour or so. His bilirubin isn't too bad, so he is able to have periods of no lights :)
His ventilation has been weaned from 50 breaths per minute yesterday, down to 35 today :) They want to get it down to about 20, to wean him off completely. The nurse said because he has handled the weaning so well he may not even need steroids to wean off it, but that's up to Dr D, we will talk about it Monday. He has a tiny bit of aspirate still, so feeds haven't been restarted yet. My babe is doing beautifully, I can't wait to get more pics with his eyes open :)
His weight is 980gms, he still has a bit of fluid, so he has started a 24hr course of lasix. They have also halved his dose of hydrocortisone which is for his BP, so we'll see how is is with that.. Everything is moving in the right direction. I would have been 28wks pregnant today! Tomorrow is a pregnancy and infant loss memorial service with Bears of Hope (formerly Bonnie Babes). Deb is reading out a poem and releasing Taite and Seth's balloons for me. I wish I could be there..
MUMMY
Tired, but soooooo happy I can look at my baby in the eye now.. It makes it hard to leave now that he is so aware. He knows when I am there so I want to be there all the time. I wish I could sleep next to his crib, then maybe I would get some rest.. I hate that I can't just take him home NOW.. I know it will come eventually, but I want my baby home with mama where he belongs.. Feeling a little up and down today. Torn between sleeping and being a Mother to my babe..
I'm actually going for a quick sleep now before it's time to go back for nappy change :)
Today was so special! I got there for his cares this morning to be told he will be having a wash and weigh :)During his sponge bath, he opened BOTH his eyes completely!! We had great eye contact! The nurse managed to get some pictures to put on his disc, but I am yet to get a pic, every time I went to take one he'd close them, or only open 1 eye lol.. After his weigh he had the phototherapy lights on, but when I go back this arvo, I'll take the light off for half hour or so. His bilirubin isn't too bad, so he is able to have periods of no lights :)
His ventilation has been weaned from 50 breaths per minute yesterday, down to 35 today :) They want to get it down to about 20, to wean him off completely. The nurse said because he has handled the weaning so well he may not even need steroids to wean off it, but that's up to Dr D, we will talk about it Monday. He has a tiny bit of aspirate still, so feeds haven't been restarted yet. My babe is doing beautifully, I can't wait to get more pics with his eyes open :)
His weight is 980gms, he still has a bit of fluid, so he has started a 24hr course of lasix. They have also halved his dose of hydrocortisone which is for his BP, so we'll see how is is with that.. Everything is moving in the right direction. I would have been 28wks pregnant today! Tomorrow is a pregnancy and infant loss memorial service with Bears of Hope (formerly Bonnie Babes). Deb is reading out a poem and releasing Taite and Seth's balloons for me. I wish I could be there..
MUMMY
Tired, but soooooo happy I can look at my baby in the eye now.. It makes it hard to leave now that he is so aware. He knows when I am there so I want to be there all the time. I wish I could sleep next to his crib, then maybe I would get some rest.. I hate that I can't just take him home NOW.. I know it will come eventually, but I want my baby home with mama where he belongs.. Feeling a little up and down today. Torn between sleeping and being a Mother to my babe..
I'm actually going for a quick sleep now before it's time to go back for nappy change :)
Friday, October 14, 2011
Day 16 - Mummy's 1st cuddle!!
JETT!
What an amazing day! The pics say it all!!! I was at the obstetric review clinic when Jett's nurse called me. She said Bub had been taken off high frequency ventilation and was doing well and she had spoken to Dr D about a cuddle and Dr said we just have to be careful of his arterial line.. It took me a second to comprehend what she had said, then it clicked.. I can have a CUDDLE!!!! So I left the clinic and went straight around, I did his cares then the nurse got the recliner set up for me and away we went.. 2 hours of skin to skin :) It was so nice!
My Bubba is doing so well, he is off dopamine and dobutamine. Off the sedation completely, and Dr D thinks we might start steroids on Monday and try to get off ventilation completely.. Oh they also gave him a bit of microlax and he did his 1st poo!! I am so so happy today, and the milk sure is flowing now :) Mama loves her Jett Plane!!!!
MUMMY!
Just happy. I had the most amazing couple of hours!My Dad was here, he took some pics, he goes back tomorrow.. He loves little Jett and was happy he was there to share such a special moment :)
Thursday, October 13, 2011
Day 15 :)
JETT!
Holding him while he gets sheets changed & gazing down at my Son :)
Another good day! Bub will be coming off high frequency ventilation tomorrow!!!!! His Morph and Medaz are weaned to 4mcgs now and the dopamine and dobutamine are almost off. The doses aree really low, although I can't remember exactly! Mel came up today and managed to capture some pics of Mummy holding him up while he had a bed change! I also sponge bathed him this afternoon.. I can't wait til he gets a proper bath! I love my baby boy, I am so proud of him :) He loved Daddy's visit today, sqeezing his finger VERY tight :)
MUMMY!
Well, today a blood test came back with low cortisol (sp?) levels, so I have to have another test tomorrow. Apparently after a big bleed like I had, the pituitary gland can stop working as well. Cortisol is a steroid that helps you cope with stress, I don't want to be low on that! Anyway, we'll see what the repeat test says, then take it from there..
I am over expressing, I have thrush on my nipple it is so painful. Mel took me to Chermside during quiet time today so I grabbed some treatment and a few other things. I bought Jett a book :). The electric pump I borrowed isn't working quite as well as I need it to, so I have sent my friends on a mission to get me one. Apparently some ladies from the awesome parenting forum I am on, have raised some $$ so that will pay for it.. Yay, I'm so happy and grateful! Decent electric breast pumps are expensive, and I am in this for the long haul so need one that does the job well.
I am so lucky I have great friends.. Thank you all so much!! xx
That's about it, I think. I am tired but so happy Bub is doing so well :) Can't wait to see how Bub goes after his ventilation is changed. I'm nervous, but excited this is a step forward!
Wednesday, October 12, 2011
Day 14 :)
JETT!
Jett holding Daddy's hand :)
OMG my baby looks amazing today! Most of his fluid is gone, the creases in his neck look almost healed, his morph and madaz have been weaned to 8mcgs, so we have my active baby back! His fluid has gone down considerably, I'd love to know what he weighs now.. Maybe tonight he'll have a wash & weigh?
He was taken off his nitric oxide at midnight last night, and has been coping well on room air! Now to get off high frequency vent and stabilise this breathing so Mama can have a cuddle!
He needed a another blood transfusion today, due to low HB, but that's just because of all the blood they are taking off him with his 4hrly gases.. Unfortunately his little cannula tissued and he had to have it re sited.. My poor baby.. He is still aspirating bile, but not as much, Dr D isn't concerned about it at all and his tummy isn't distended or hard so that's a good sign..
My Dad came up today so Jett met his Poppy :) He'll be back on Friday.
MUMMY
I am good today, I sacrificed my early morning expressing time, so I could get some more sleep. I was so exhausted and really fading fast, I wasn't sure how I could keep doing this, but with some sleep and determination to be there for my lil Jett plane, here I am doing all again, and loving every second spent with my Baby :)
The nurses have been so supportive and fantastic.
Tuesday, October 11, 2011
Day 13 :)
JETT!
Bubba has had a good day today. His fluid has gone down heaps, and he is looking much better. His neck is getting better every day. He had another xray today, his lungs look ok and his gut looks ok too. He is still aspirating bile from his NG tube, but not as much and not as dark.. Dr D said it's not a major concern at the moment, as long as we keep him nil by mouth. Now that his chest drains are out Bubby can lay on his tummy now which helps shift the fluid. His dopamine and dobutamine have almost been completely weaned, his morph and medaz have been weaned to 12 which is great so my baby is active again. He wants to open those eyes!! He hasn't yet though.. I really hope I'm there when he does..
THE BIG NEWS!
His nitric oxide has been weaned to 1.8 and will be turned off at midnight!!! This means 1 step closer to a cuddle..
MUMMY!
There are 2 bigger bubs in his room, they are allowed to be held and breast feed. I'm finding it really hard. I want to hold my baby. I hate not being able to. I feel really jealous and ripped off. I am so tired and just wish I could get comfortable touching him.. I almost fall asleep against the isolette, holding his beautiful little hand. I forced myself to leave tonight to eat, but I feel so shit I can't..
Bubba has had a good day today. His fluid has gone down heaps, and he is looking much better. His neck is getting better every day. He had another xray today, his lungs look ok and his gut looks ok too. He is still aspirating bile from his NG tube, but not as much and not as dark.. Dr D said it's not a major concern at the moment, as long as we keep him nil by mouth. Now that his chest drains are out Bubby can lay on his tummy now which helps shift the fluid. His dopamine and dobutamine have almost been completely weaned, his morph and medaz have been weaned to 12 which is great so my baby is active again. He wants to open those eyes!! He hasn't yet though.. I really hope I'm there when he does..
THE BIG NEWS!
His nitric oxide has been weaned to 1.8 and will be turned off at midnight!!! This means 1 step closer to a cuddle..
MUMMY!
There are 2 bigger bubs in his room, they are allowed to be held and breast feed. I'm finding it really hard. I want to hold my baby. I hate not being able to. I feel really jealous and ripped off. I am so tired and just wish I could get comfortable touching him.. I almost fall asleep against the isolette, holding his beautiful little hand. I forced myself to leave tonight to eat, but I feel so shit I can't..
Update from last night - A bit of a scare :(
So after I updated my blog yesterday, I went to the nursery, but after I expressed, I decided that instead of staying til around 6, I'd come and have a sleep as I was sooo tired. So about 4.30, I came back to RM house, closed the curtains, set the alarm and fell into bed. I drifted off to a very light sleep, and was disappointed when I woke only an hour later. Rolling over, I gave myself another hour, but then Ring Ring! It was the RM phone, so up like a shot I knew it was the nursery.. I was informed that Bub had more bile and they suspected a twisted bowel :(. Plan of action was an Ultrasound, and if it was twisted, surgery.. Fuck! Mama still felt dead, so I made the biggest, strongest coffee in the world, grabbed an apple, strawberries and almonds and went to be with my babe.
When I got there, rounds were happening, so I scoffed my snacks in the parents lounge then went back to Jett and held his tiny hand.. They were prepping for surgery, setting up the high frequency vent over an open cot. There were 2 radiologists and I was there as they started the ultrasound on Bub's gut. The bile poured out of the NG tube with pressure on his tummy, it was awful,but with Mama holding his hand and singing to him the whole time, he tolerated it well..
The scan was taking ages! I then find out they had seen what they wanted, but were just 'playing' as they were from the RCH, and don't get to do these U/S on tiny babes much!! Umm, I wanted to tell them to fuck off. My precious babe is not a toy. Luckily the look on my face said it all and they wrapped it up. The nurse called the Dr, and it was decided that there was no twist :) Yay!! The only thing is, the U/S isn't a definitive test, the only real way to tell was to do a dye test which they concluded Jett wouldn't tolerate, so it was watch and wait.. Thank God though, it looked good at this stage. I was so worried how Jett would tolerate surgey..
I sat with Bub all night. Every now and then I would feel him clasp my finger tighter, see his tummy tighten a few times like he was about to vomit and then bile pour out of the NG tube :( It was really awful. My poor baby :(
Then came the highlight of the evening!!!
I gave Jett a sponge bath, and held him up (just with my hands in the crib) while the nurse changed his bedding!! He tolerated that amazingly, and there wasn't too much bile coming out of his tube, he had stopped the vomiting movements and had very little aspirate when they syringed the tube, so Mummy finally felt comfy enough to leave him at 1am.. So much for my arvo sleep!! Lol There was no place I'd rather be though, I know I comforted him heaps during that ordeal.. As I said previously, I can really tell he is responding positively to my touch and voice, and he tolerated that U/S better than his echo, which they had done earlier when I wasn't there..
The power of a Mother's touch!! Now after my little sleep, I am ready to face the day again (sorta!). I just called the nursery to see how he was since I left and the nurse was on her break, so I am waiting for the call back!
When I got there, rounds were happening, so I scoffed my snacks in the parents lounge then went back to Jett and held his tiny hand.. They were prepping for surgery, setting up the high frequency vent over an open cot. There were 2 radiologists and I was there as they started the ultrasound on Bub's gut. The bile poured out of the NG tube with pressure on his tummy, it was awful,but with Mama holding his hand and singing to him the whole time, he tolerated it well..
The scan was taking ages! I then find out they had seen what they wanted, but were just 'playing' as they were from the RCH, and don't get to do these U/S on tiny babes much!! Umm, I wanted to tell them to fuck off. My precious babe is not a toy. Luckily the look on my face said it all and they wrapped it up. The nurse called the Dr, and it was decided that there was no twist :) Yay!! The only thing is, the U/S isn't a definitive test, the only real way to tell was to do a dye test which they concluded Jett wouldn't tolerate, so it was watch and wait.. Thank God though, it looked good at this stage. I was so worried how Jett would tolerate surgey..
I sat with Bub all night. Every now and then I would feel him clasp my finger tighter, see his tummy tighten a few times like he was about to vomit and then bile pour out of the NG tube :( It was really awful. My poor baby :(
Then came the highlight of the evening!!!
I gave Jett a sponge bath, and held him up (just with my hands in the crib) while the nurse changed his bedding!! He tolerated that amazingly, and there wasn't too much bile coming out of his tube, he had stopped the vomiting movements and had very little aspirate when they syringed the tube, so Mummy finally felt comfy enough to leave him at 1am.. So much for my arvo sleep!! Lol There was no place I'd rather be though, I know I comforted him heaps during that ordeal.. As I said previously, I can really tell he is responding positively to my touch and voice, and he tolerated that U/S better than his echo, which they had done earlier when I wasn't there..
The power of a Mother's touch!! Now after my little sleep, I am ready to face the day again (sorta!). I just called the nursery to see how he was since I left and the nurse was on her break, so I am waiting for the call back!
Monday, October 10, 2011
Day 12 :)
JETT
Another good day, HEAD SCAN IS ALL CLEAR!!! Yay! He will have another one week 6, but Dr D said that's just to check for scarring and there is nothing to indicate he would have any :).. His chest drain was to come out today, I left the nursery at quiet time and it was still in, but I'd say it would be out by now..
His delta P was put down to 14, and his nitric oxide put down to 8 from 10.. They are planning on weaning it every few hours.
His Morphine and medaz have been weaned to 16 from 20, they want him to become an active lil bubba again to try and shift some of this fluid. His neck is improving, the skin is still raw, but it's still only the top layer, so it's not too bad.
Unfortunately though today he was vomiting then had 5ml of bile aspirated just before his 9am feed, so feeds have been stopped. He has had an x ray and there is a bit of air in his gut, but Dr thinks it's fine for now and we should just see how he goes. He had his tape changed around his ventilation, and although he didn't like that much, he stayed on room air and recovered really quickly :).. Daddy came up with a mate today (Uncle Benno )to visit, and while we were sitting there he started vomiting again and bile started coming out of his nose :( They then aspirated him but they only got 2mls. The nurse then set up a syringe to his NG tube, so if stuff needs to come up he wont vomit, or have it pour out.. My poor baby.. I was with him for all those things this morning though, and now he is really responding to my voice and touch, which is great.. Makes it very hard to leave though...
MUMMY!
Mummy is good. I bought some more sheets, so later I'll wash them and the ones Suzi brought over for me, and next bed change he can use his own stuff :)Apart from that, I'm stoked about the scan :) :) I can't believe tomorrow he will have outlived his brothers. I wish they were here, I miss Taite and Seth so much, but I know they are watching over Jett, I can just feel it :)
Another good day, HEAD SCAN IS ALL CLEAR!!! Yay! He will have another one week 6, but Dr D said that's just to check for scarring and there is nothing to indicate he would have any :).. His chest drain was to come out today, I left the nursery at quiet time and it was still in, but I'd say it would be out by now..
His delta P was put down to 14, and his nitric oxide put down to 8 from 10.. They are planning on weaning it every few hours.
His Morphine and medaz have been weaned to 16 from 20, they want him to become an active lil bubba again to try and shift some of this fluid. His neck is improving, the skin is still raw, but it's still only the top layer, so it's not too bad.
Unfortunately though today he was vomiting then had 5ml of bile aspirated just before his 9am feed, so feeds have been stopped. He has had an x ray and there is a bit of air in his gut, but Dr thinks it's fine for now and we should just see how he goes. He had his tape changed around his ventilation, and although he didn't like that much, he stayed on room air and recovered really quickly :).. Daddy came up with a mate today (Uncle Benno )to visit, and while we were sitting there he started vomiting again and bile started coming out of his nose :( They then aspirated him but they only got 2mls. The nurse then set up a syringe to his NG tube, so if stuff needs to come up he wont vomit, or have it pour out.. My poor baby.. I was with him for all those things this morning though, and now he is really responding to my voice and touch, which is great.. Makes it very hard to leave though...
MUMMY!
Mummy is good. I bought some more sheets, so later I'll wash them and the ones Suzi brought over for me, and next bed change he can use his own stuff :)Apart from that, I'm stoked about the scan :) :) I can't believe tomorrow he will have outlived his brothers. I wish they were here, I miss Taite and Seth so much, but I know they are watching over Jett, I can just feel it :)
Sunday, October 9, 2011
Day 11 :)
JETT
Well not much has changed since yesterday :)He is still on room air and his delta P is down to 16. They raise oxygen and delta P for cares and suction, but he is tolerating it really well and is able to be weaned down again soon after. He was weighed today which was a big event for him, being lifted out of his crib, but again he coped really well. They weighed him because they wanted to ensure his medication doses were correct, particularly the hydrocortisol for his BP.. His weight is recorded at was 1081gms (although, I'm sure I heard 1181gms when they weighed him??)and they have decided not to change the dosage of meds. His other BP meds are still slowly being weaned.. The Drs also don't record his weight 'officially' because he is so full of fluid, it's not a correct weight :( I can't wait til this fluid goes and I know how much he has gained from Mama's milk!
He is up to 3mls today! Tolerating feeds sooo well!! He had a head scan again today, I'll find out the results tomorrow morning. I was SO ANGRY because nobody bothered to call me to let me know he was having it. I knew it would be today, just not sure when, so when I asked at lunch I was told it had already been done.It must have been JUST before I got there this morning! God I was angry! Although it's a non invasive procedure the head scans are a big deal to me. If I am there also I can get the gist of how it is.. All I was told by the nurse was "A little bit on the right" apparently.. So yeah the official report I will get from the Consultant tomorrow. I'm not too worried though. I think if it was serious, I would have had someone speak with me today..
Anyway, now there is a note next to his crib that I MUST be called for any non urgent procedures.. I was lucky I was called for the weigh.. I was on my way when the nurse called me, so they waited for me luckily.. I would have been VERY unhappy if I'd missed that..
I'm not sure if it helps Jett, but I know it makes Mummy feel better to be there talking to him while he is having procedures or being moved.
MUMMY
Apart from being angry I wasn't called today I have had an ok day. It's good that Jett is so stable. I have been spending lots of time with him, holding his hand, singing, reading books and of course expressing lol.. I told Jett about his family today and how he has 3 big brothers, 2 of which are his guardian angels.. I miss Taite and Seth sooo much :( I am so in awe of my 3rd perfect son. I feel so guilty I couldn't hold him in :( I hate watching him go through so much shit, but he is getting better by the day it seems. He has been under phototherapy lights, but when he isn't under them he looks amazing. His neck still has broken down skin, so I am terrified of him getting an infection, but it was looking better too today. HE NEEDS TO GET RID OF THIS FLUID!!!! My poor baby :(
I'm a bit lonely. From now on I will be alone most of the time at night. Funnily enough I have really started to miss my cat. It occured to me that I haven't really lived on my own, because I have always had Jazz. I wish he could stay with me..
We have been getting visitors through the day, and I am welcoming them :)
Our visitors so far (not in order of visiting, I'm just trying to remember who has been here :):
Nan, pop, Meme, Aunty Kelly, Uncle Shannon, Taylah, Meekah, Big brother Jacob & his Mum, Yasmin, Rachel, Mel, Nae, Anna, Cassandra, Nikki & Suzi. I think they are the only ones who have been in to see Jett. Some of Jade's mates have been up, but I don't think they actually went in.I am loving showing off my boy :)Well Mama's off to get some sleep, so I can see my baby early in the morning and get what will hopefully be a good result for this head scan :)
Well not much has changed since yesterday :)He is still on room air and his delta P is down to 16. They raise oxygen and delta P for cares and suction, but he is tolerating it really well and is able to be weaned down again soon after. He was weighed today which was a big event for him, being lifted out of his crib, but again he coped really well. They weighed him because they wanted to ensure his medication doses were correct, particularly the hydrocortisol for his BP.. His weight is recorded at was 1081gms (although, I'm sure I heard 1181gms when they weighed him??)and they have decided not to change the dosage of meds. His other BP meds are still slowly being weaned.. The Drs also don't record his weight 'officially' because he is so full of fluid, it's not a correct weight :( I can't wait til this fluid goes and I know how much he has gained from Mama's milk!
He is up to 3mls today! Tolerating feeds sooo well!! He had a head scan again today, I'll find out the results tomorrow morning. I was SO ANGRY because nobody bothered to call me to let me know he was having it. I knew it would be today, just not sure when, so when I asked at lunch I was told it had already been done.It must have been JUST before I got there this morning! God I was angry! Although it's a non invasive procedure the head scans are a big deal to me. If I am there also I can get the gist of how it is.. All I was told by the nurse was "A little bit on the right" apparently.. So yeah the official report I will get from the Consultant tomorrow. I'm not too worried though. I think if it was serious, I would have had someone speak with me today..
Anyway, now there is a note next to his crib that I MUST be called for any non urgent procedures.. I was lucky I was called for the weigh.. I was on my way when the nurse called me, so they waited for me luckily.. I would have been VERY unhappy if I'd missed that..
I'm not sure if it helps Jett, but I know it makes Mummy feel better to be there talking to him while he is having procedures or being moved.
MUMMY
Apart from being angry I wasn't called today I have had an ok day. It's good that Jett is so stable. I have been spending lots of time with him, holding his hand, singing, reading books and of course expressing lol.. I told Jett about his family today and how he has 3 big brothers, 2 of which are his guardian angels.. I miss Taite and Seth sooo much :( I am so in awe of my 3rd perfect son. I feel so guilty I couldn't hold him in :( I hate watching him go through so much shit, but he is getting better by the day it seems. He has been under phototherapy lights, but when he isn't under them he looks amazing. His neck still has broken down skin, so I am terrified of him getting an infection, but it was looking better too today. HE NEEDS TO GET RID OF THIS FLUID!!!! My poor baby :(
I'm a bit lonely. From now on I will be alone most of the time at night. Funnily enough I have really started to miss my cat. It occured to me that I haven't really lived on my own, because I have always had Jazz. I wish he could stay with me..
We have been getting visitors through the day, and I am welcoming them :)
Our visitors so far (not in order of visiting, I'm just trying to remember who has been here :):
Nan, pop, Meme, Aunty Kelly, Uncle Shannon, Taylah, Meekah, Big brother Jacob & his Mum, Yasmin, Rachel, Mel, Nae, Anna, Cassandra, Nikki & Suzi. I think they are the only ones who have been in to see Jett. Some of Jade's mates have been up, but I don't think they actually went in.I am loving showing off my boy :)Well Mama's off to get some sleep, so I can see my baby early in the morning and get what will hopefully be a good result for this head scan :)
Saturday, October 8, 2011
Day 10 :)
JETT
Pictures were taken yesterday, except the one with sunnies on, that was taken tonight. He's soooo CUTE! My lil baby has had such a good couple of days!! He was doing really well yesterday and is doing even better today :) I'll try to recall all the events!
Last night his bedding was changed and he tolerated it really well. His oxygen was brought up before the handling just in case, but no de sats and he was weaned again overnight.. This morning I got a really good report his Delta P (ventilation wobble) had come down from 20 to 15 and his oxygen had come down from 36 to 28%. :) He started on hydrocortisol yesterday for his blood pressure and is being slowly weaned off the dobutamine and the dopamine..
He is very puffy with fluid which is causing the skin on his neck to break down :( They are using Bactarin to treat it and kaltostat. He is now on lasix to hopefully get rid of the fluid, but it's a balance between that and making sure his electrolytes aren't thrown out too much.. He needed another albumin transfusion which he finished a couple of hours ago. During the day his delta P went back up to 20 after his blood gas showed slightly higher carbon dioxide..
Tonight when I left he had just had a blood gas which was awesome :) His delta P is back down to 19, his oxygen is 21% which is equivalent to ROOM AIR!! :) :) His nitric oxide has been brought down to 10 from 20 and this is great news because weaning off that is the first step off towards coming off high frequency ventilation. It is still one day at a time though and 1 step forward 2 steps back is unfortunately the nature of the game. If he keeps like this though, Mama will get cuddles in no time..
Also today his feeds went up to 2mls and he is tolerating them really well. We are waiting for him now to do his first poo :)
MUMMY
I'm doing well, Mum left yesterday, so that was sad, but because Jett has had such a good couple of days my head space is really good.
I have awesome friends so I feel very lucky to have that support :) Apart from that, I'm tired so it's time to express (again :/) then get some sleep.
The jaundice lights have been on and off over the last 2 days, at the moment they are on..
Umm, I think that's it! Oh, he has a head scan tomorrow. Just a routine one, there is no indication of brain bleeding for now..
delta p 19
Thursday, October 6, 2011
Day 8
JETT
My Bubba doesn't like night time! He had a very unstable night last night, his oxygen being up to 95% :( His feeds were stopped, but have started again and now his oxygen is back to about 50%.. He had another chest x ray, but his lungs are still ok, he doesn't need anymore drains at this stage. The mean pressure of his ventilation increased from 14 to 15 and the ventilation (wobble) increased over night too but is gradually decreasing. His sats were very good while Mama was there, but when I changed his bum his oxygen went down to 69.. It came back up when I stopped annoying him though! He has been stable today and has been holding Mama's hand while I read to him. I went and bought him some books today, I'm sick of reading the same one! I keep telling him, his breathing has to stabilise before Mummy can give him a cuddle, so hopefully it will. At the moment though he is not looking like coming off the high frequency just yet.
MUMMY
Mummy is exhausted! Pumping every 2hrs and I'm over it! Mum and I went and had a de brief with the anasthetic nurse on duty the night of his delivery. It was good to have any questions answered (not that I had many) and just talk about what happened in theatre. It was also very scary to hear her say again that it was such a critical situation. She confirmed I lost 7.5 litres of blood and my volume would only be about 4, so I lost almost double my blood volume. Scary shit. Even the nurse started tearing up talking about it. So again I urge anyone if they can to become a blood donor. My Bub will probably need another one in a day or so. He's had 2 so far..
Jade is coming up to stay with me tomorrow night yay! I miss him.. Sad thing is, Mum is going :( I don't know what I would have done without her.. Anyway, about to have a little rest then get back to my baby. :)
Wednesday, October 5, 2011
Day 7 :)
JETT
What a day! Today he had his left drain taken out, so far so good, his latest x ray showed he didn't have air accumulation, so the drain did it's job :)
He had an arterial line put in today. I hate the thought of it, so don't think of it, it's in now and he was ok. His oxygen is up to about 60% and ventilation is up to about 35 but that is because he has had a lot of handling. He is also under phototherapy lights.
Now the best news ever!! His head scan is completely normal! Such a relief! So today has been a tough full on day, but he is good at the moment :)
He met his big brother today. Big Bro was pretty impressed with how tiny he is. He said he was soo cute lol :) So yes a full on day, but it's been good.
MUMMY
In short, Mummy feels fucked lol. Soo exhausted, but running on adrenalin again after receiving good news.
I was discharged today so am staying in Ronald Mac house. It was emotional coming back, but I just know this time will be different :)
I'm off to see my baby now I am so in awe of my beautiful son.. He loves holding Mummy's finger now that he has a free hand. All we need for a skin to skin cuddle is that right drain out, his umbilical line out and for his breathing to stabilise. I hope that happens soon :)
What a day! Today he had his left drain taken out, so far so good, his latest x ray showed he didn't have air accumulation, so the drain did it's job :)
He had an arterial line put in today. I hate the thought of it, so don't think of it, it's in now and he was ok. His oxygen is up to about 60% and ventilation is up to about 35 but that is because he has had a lot of handling. He is also under phototherapy lights.
Now the best news ever!! His head scan is completely normal! Such a relief! So today has been a tough full on day, but he is good at the moment :)
He met his big brother today. Big Bro was pretty impressed with how tiny he is. He said he was soo cute lol :) So yes a full on day, but it's been good.
MUMMY
In short, Mummy feels fucked lol. Soo exhausted, but running on adrenalin again after receiving good news.
I was discharged today so am staying in Ronald Mac house. It was emotional coming back, but I just know this time will be different :)
I'm off to see my baby now I am so in awe of my beautiful son.. He loves holding Mummy's finger now that he has a free hand. All we need for a skin to skin cuddle is that right drain out, his umbilical line out and for his breathing to stabilise. I hope that happens soon :)
Tuesday, October 4, 2011
Day 6 - Update..
JETT
So another night of gases being up and down. Things change so quickly, last night when I left the nursery he was on low ventilation with no oxygen, but that drastically changed and does from time to time.. His morph and midaz have been increased from 8 to 10mcg, he's just so active and we can't have him hurting himself! Due to him being so unstable last night he was having frequent blood gases, so his HB dropped a bit. He had a transfusion from 3pm - 9pm and his last gases were great! He is however having his head scan brought forward just in case he has had a bleed. Hopefully not and the HB just dropped from the blood gases.. So tomorrow will be a bit scary, but he is not having any other symptoms that indicate a brain bleed, so fingers crossed.
Today his cannula tissued and his hand blew up, it is so swollen, my poor babe :( I cried when I saw his hand. It's awful, I know what that feels like :(
A positive though, they put the cannula in his foot so I have held his hand all night.
BIG NEWS!! Jett started feeds today! He has had 3 lots of half a Ml and no aspirate, so that shows he is tolerating it well. I got milk on my finger and bathed his face in it tonight. When I put it near his mouth he stuck his tongue out, so I know he's had a taste.
Oh and something funny, he peed twice while I was changing his nappy lol. He can squirt for how tiny he is! It went all up his leg and on the plastic he uses to keep his body temp up, cheeky little man. He is a real fuss pot. Normally nappy changes are 6 hourly, but my little Jett wants them more often. He gets fussy and wriggly til they change it. He's so CUTE!!!
MUMMY
My days are always up and down. I swing between feeling so guilty I couldn't keep him warm in my belly, to just accepting this is how it is. I am a bit worried about the scan tomorrow. I'm trying not to, but it's hard..
I think my milk supply is slowing so a quick call to a friend was made and some lactation cookies are on their way soon.. Can't lose this supply, my Bubba loves Mama's milk!
Because of the sedation he was extremely settled today and I touched him probably the most I have since he was born. I put my finger in his hand and he clasps it. It is the most amazing thing. I am so in love with my boy. He is so perfect!
I'm being discharged tomorrow yay! I am being D/C with clexane, so I have to inject myself, oh the joy.. I am looking forward to making my home away from home. I am missing Jade he has stayed at home to go to work but is coming up tomorrow.
Tomorrow will be a good day, with my bub stronger and I will (hopefully) have had some sleep so I will have strength to make lots of milk.
So another night of gases being up and down. Things change so quickly, last night when I left the nursery he was on low ventilation with no oxygen, but that drastically changed and does from time to time.. His morph and midaz have been increased from 8 to 10mcg, he's just so active and we can't have him hurting himself! Due to him being so unstable last night he was having frequent blood gases, so his HB dropped a bit. He had a transfusion from 3pm - 9pm and his last gases were great! He is however having his head scan brought forward just in case he has had a bleed. Hopefully not and the HB just dropped from the blood gases.. So tomorrow will be a bit scary, but he is not having any other symptoms that indicate a brain bleed, so fingers crossed.
Today his cannula tissued and his hand blew up, it is so swollen, my poor babe :( I cried when I saw his hand. It's awful, I know what that feels like :(
A positive though, they put the cannula in his foot so I have held his hand all night.
BIG NEWS!! Jett started feeds today! He has had 3 lots of half a Ml and no aspirate, so that shows he is tolerating it well. I got milk on my finger and bathed his face in it tonight. When I put it near his mouth he stuck his tongue out, so I know he's had a taste.
Oh and something funny, he peed twice while I was changing his nappy lol. He can squirt for how tiny he is! It went all up his leg and on the plastic he uses to keep his body temp up, cheeky little man. He is a real fuss pot. Normally nappy changes are 6 hourly, but my little Jett wants them more often. He gets fussy and wriggly til they change it. He's so CUTE!!!
MUMMY
My days are always up and down. I swing between feeling so guilty I couldn't keep him warm in my belly, to just accepting this is how it is. I am a bit worried about the scan tomorrow. I'm trying not to, but it's hard..
I think my milk supply is slowing so a quick call to a friend was made and some lactation cookies are on their way soon.. Can't lose this supply, my Bubba loves Mama's milk!
Because of the sedation he was extremely settled today and I touched him probably the most I have since he was born. I put my finger in his hand and he clasps it. It is the most amazing thing. I am so in love with my boy. He is so perfect!
I'm being discharged tomorrow yay! I am being D/C with clexane, so I have to inject myself, oh the joy.. I am looking forward to making my home away from home. I am missing Jade he has stayed at home to go to work but is coming up tomorrow.
Tomorrow will be a good day, with my bub stronger and I will (hopefully) have had some sleep so I will have strength to make lots of milk.
Monday, October 3, 2011
Day 5.. An update!
Jett
*Deep breath* Ok so it has been a scary few days, but Jett is ok. He has whats called pulmonary Interstitial emphysema, which basically means he is leaking air into his chest cavity and his lungs aren't working to do the correct gas exchange. this results in a lot of desaturations which is really stressful for Mummy to see. He is having a bit of trouble keeping his temperature, but again it's all part of being so premature. Anyway, they have put a drain in his left lung to get rid of the air, and unfortunately today he is getting one in his right lung too.
He is a wriggly little boy, so they have also started him on morphine and medazalam to calm him down. He is on Dobutamine for his blood pressure, and ibuprofen to close the duct in his heart. He is having an echocardiogram today to see how that's been going. Also back to his lungs, I forgot to mention he is on a high frequency ventilation. It make his whole body vibrate, but it is actually more gentle than the other type of ventilator. Yesterday Jett had his day 3 head scan to check for brain bleeding, and it was good. Possibly a grade 1 bleed on the right side, but nothing that is of concern. His next head scan is day 10..
Mummy
I had a minor meltdown last night. This is the hardest thing in the world. To watch your baby go through all this shit and not be able to protect them. I had a decent sleep though last night which helps.
I saw a mental health nurse this morning and she is referring me to a psychologist to work through the trauma surrounding my babes birth, as well as the fear of having another prem. We have loads of support and I feel grateful for every ounce of love that people are sending. So again, thank you.
I am looking at getting discharged to Ronald Macdonald house on Wednesday and that will be where I live til our boy grows strong enough to come home.. Oh how I can't wait!
I am pumping loads of milk, so I am happy about that! Not sure when he will feed though, maybe today, depends how he goes after the drain is in..
It is a horrible feeling being so helpless, but we are strong, have lots of support and we can do this... Day by day..
Saturday, October 1, 2011
Baby Button is here!!!!
Our lil Bub couldn't wait! At 25+5wks our little baby boy Jett Anthony was born!A quick run down of what happened:
27th September - 11pm I started bleeding, not much but enough to be concerned.
28th September - 12.10am Arrive at RBWH. Bleeding had slowed but was watched carefully. mild contractions were present, but not enough to worry.Cervix long and closed. Placenta low lying.. I sent Jett's dad home to sleep and I rested too. I was warned that if I hemorrhaged I would have to deliver, but was reassured it wouldn't be unless absolutely necessary.
- 11am, blood loss of 500ml, sent for ultrasound. Concluded that bleed was probably caused by the edge of the placenta. As the bleeding had settled down, it wasn't a concern at that point. Low doses of morphine kept contractions at bay..
- 6pm, No bleeding or contractions, I was allowed to eat dinner, so it was obvious the staff didn't expect I would be sent to theatre.
- 9pm, settled in bed for about 10mins then felt blood loss. Upon measurement it was almost a litre. At this point blood was arranged for me, and delivery was discussed, but again no plans unless necessary. It was too early!
- 11pm, contractions coming hard and fast. Dose of morphine didn't help at all. As I had the previous classical cut the Drs didn't want me to labour. I was scared, but knew that my labour was the real thing.
29th September - 1am, theatre was arranged, labour was full on. On the way to theatre I had the urge to push. Membranes ruptured in the corridor to theatre, Baby was on his way!
- 2.44am, Jett Anthony was pushed into the world crying. I saw he was a boy and touched him before he was taken away to be worked on. Phone calls made to my Mum and Jetts dad who had missed the whole thing.
- 3.30am placenta was not coming I was losing loads of blood. Blood pressure dropping by the minute. Epidural given very slowly and into theatre I went. Placenta was manually extracted however by that stage I had lost so much blood I had lost all clotting capabilities. I was awake while a team of 20 medical professionals worked hard to save my life. I ended up having 5 IV access lines, which were extremely hard to get as I had no blood pressure. I thought I was going to die and when I asked someone they just said they were doing all they can. I just kept thinking of my baby boy who needed me and knew I had to stay strong.
Finally at 6am I was stable and was moved to ICU at 7am with massive bruising all up my arms and down my legs where they had tried to access my arteries and veins. I had a balloon in my uterus and packing in my vagina to prevent another hemorrhage. It was so scary, but when I saw my son that day I was just in love!!
Jett has to make it, because he is my last chance. I narrowly escaped a hysterectomy, but my heart was very compromised and still was for 2 days with the fluid shifts occuring. If I had been in a smaller hospital without the available blood and such a great team it's safe to say I wouldn't be here. The obstetric consultant has offered a debrief when ready and I have spoken to many of the people involved in my care that night for de briefing purposes.
So that's the short version, many other things did happen within the hours I didn't fill in but that's basically what happened. Tonight I have all lines catheters etc out except for 2 which I need for antibiotics. I have been up and about tonight and my beautiful boy is doing wonderfully today.. Each day is going to get better!!
27th September - 11pm I started bleeding, not much but enough to be concerned.
28th September - 12.10am Arrive at RBWH. Bleeding had slowed but was watched carefully. mild contractions were present, but not enough to worry.Cervix long and closed. Placenta low lying.. I sent Jett's dad home to sleep and I rested too. I was warned that if I hemorrhaged I would have to deliver, but was reassured it wouldn't be unless absolutely necessary.
- 11am, blood loss of 500ml, sent for ultrasound. Concluded that bleed was probably caused by the edge of the placenta. As the bleeding had settled down, it wasn't a concern at that point. Low doses of morphine kept contractions at bay..
- 6pm, No bleeding or contractions, I was allowed to eat dinner, so it was obvious the staff didn't expect I would be sent to theatre.
- 9pm, settled in bed for about 10mins then felt blood loss. Upon measurement it was almost a litre. At this point blood was arranged for me, and delivery was discussed, but again no plans unless necessary. It was too early!
- 11pm, contractions coming hard and fast. Dose of morphine didn't help at all. As I had the previous classical cut the Drs didn't want me to labour. I was scared, but knew that my labour was the real thing.
29th September - 1am, theatre was arranged, labour was full on. On the way to theatre I had the urge to push. Membranes ruptured in the corridor to theatre, Baby was on his way!
- 2.44am, Jett Anthony was pushed into the world crying. I saw he was a boy and touched him before he was taken away to be worked on. Phone calls made to my Mum and Jetts dad who had missed the whole thing.
- 3.30am placenta was not coming I was losing loads of blood. Blood pressure dropping by the minute. Epidural given very slowly and into theatre I went. Placenta was manually extracted however by that stage I had lost so much blood I had lost all clotting capabilities. I was awake while a team of 20 medical professionals worked hard to save my life. I ended up having 5 IV access lines, which were extremely hard to get as I had no blood pressure. I thought I was going to die and when I asked someone they just said they were doing all they can. I just kept thinking of my baby boy who needed me and knew I had to stay strong.
Finally at 6am I was stable and was moved to ICU at 7am with massive bruising all up my arms and down my legs where they had tried to access my arteries and veins. I had a balloon in my uterus and packing in my vagina to prevent another hemorrhage. It was so scary, but when I saw my son that day I was just in love!!
Jett has to make it, because he is my last chance. I narrowly escaped a hysterectomy, but my heart was very compromised and still was for 2 days with the fluid shifts occuring. If I had been in a smaller hospital without the available blood and such a great team it's safe to say I wouldn't be here. The obstetric consultant has offered a debrief when ready and I have spoken to many of the people involved in my care that night for de briefing purposes.
So that's the short version, many other things did happen within the hours I didn't fill in but that's basically what happened. Tonight I have all lines catheters etc out except for 2 which I need for antibiotics. I have been up and about tonight and my beautiful boy is doing wonderfully today.. Each day is going to get better!!
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