JETT
Jett has still had a few desats involving him going grey, it's very scary, but he hasn't had anymore bradys.
The surgeons came to talk to me and the plan is they will most likely operate tomorrow. They will make a small cut in his right side and create a stoma. Then when he gets a bit stronger they will then go ahead with the contrast and do another surgery to remove the dead or narrowed part of the bowel, then he'll have another surgery to reverse the stoma.. So 3 surgeries, but they just feel that he wouldn't be strong enough to tolerate the full surgery tomorrow.
I have been advised that surgery is risky, but leaving it could be riskier. We are worried that if he doesn't have surgery, he could end up with a perforation and that would result in emergency surgery. At least this way, it's planned, through the day with lots of back up and Jett's Dr will be there. I think that they have left it as long as they can, and by doing this stoma once he recovers Jett will be able to get back on Mama's milk and get stronger for the next surgery. I have been assured I have a great team, 2 of the best surgeons will be doing the operation. (So they tell me) Bub wont be transported to the childrens hospital, they are just going to a procedure room on the same floor to minimise travelling.
I have to consent to the surgery of course, but I honestly feel that between his Dr's and the surgeons they have weighed up the risks over time and decided accordingly. I don't feel it has been a rash decision on anyones part and everyone wants the best possible outcome for my baby. There are no guarantees though. I am really scared.
MUMMY
I have had an awful day today, so much to process. I have no clue how I am going to sleep tonight, but I know I need to, because I need to be strong for my baby tomorrow.
Anyone reading, please pray to whoever/whatever you believe in.
I have faith my little Jett Plane will pull through, he's so brave and strong. He has so many people who love him and lots of special guardian angels watching over him.
I am still so scared and I can't believe this is happening to my boy :(
Tuesday, November 8, 2011
Day 41
JETT
Well yesterday was a good day until I changed his nappy last night. He had a nappy change earlier that had a tiny streak of blood in it and we were hoping it was just trauma around his anus from the enema, but then his next nappy change proved different. It was full of poo and clotty blood :(. The Dr's immediately did a blood count and an x ray, both of which came back the same as the previous ones, so that was a good sign. Nothing was done overnight as his ventilation was stable. This morning at 4am his nappy had more blood in it, so I was at the hospital early this morning, to sit with my baby.
When they did his blood gas at 6am Jett had a major bradycardia and his oxygen saturations dropped down to 20%. He was grey, it was awful. Luckily though he didn't need to be bagged, they just increased his ventilation rate and he recovered quite quickly. Later on when they managed to get a blood gas, it came back that his carbon dioxide was 88 so they increased his vent rate permanently from 40 to 45.
He then had another massive desat, with his oxygen levels dropping to the 30's so his rate was again increased to 50..
When his Dr (Dr D) came to see him she wanted to start him back on antibiotics in case he has an infection in his gut (possibly NEC, which has been mentioned in earlier posts) so to start him on AB's she first needed to put in a cannula. :( One hour she was in there with him and when she finally got a vein it was in his head :(.
I cried when I saw it, my beautiful baby's head, was one part of him untouched and now it had a drip in it :(... It is so unfair, I hate seeing my baby boy like this :(
Dr D is thinking that the surgeons will just have to operate without a contrast. She was going to talk to them today and I am hoping to see them this afternoon. Dr D seems to think surgery is likely in the next couple of days. So scared for my baby boy.
MUMMY
Sad and scared. Angry that my baby has to go through this.. Fucking sux. My baby is laying in an isolette with a fucking drip in his head and possibly about to have surgery. It really isn't fair. He is so brave. I love my baby so much.
Well yesterday was a good day until I changed his nappy last night. He had a nappy change earlier that had a tiny streak of blood in it and we were hoping it was just trauma around his anus from the enema, but then his next nappy change proved different. It was full of poo and clotty blood :(. The Dr's immediately did a blood count and an x ray, both of which came back the same as the previous ones, so that was a good sign. Nothing was done overnight as his ventilation was stable. This morning at 4am his nappy had more blood in it, so I was at the hospital early this morning, to sit with my baby.
When they did his blood gas at 6am Jett had a major bradycardia and his oxygen saturations dropped down to 20%. He was grey, it was awful. Luckily though he didn't need to be bagged, they just increased his ventilation rate and he recovered quite quickly. Later on when they managed to get a blood gas, it came back that his carbon dioxide was 88 so they increased his vent rate permanently from 40 to 45.
He then had another massive desat, with his oxygen levels dropping to the 30's so his rate was again increased to 50..
When his Dr (Dr D) came to see him she wanted to start him back on antibiotics in case he has an infection in his gut (possibly NEC, which has been mentioned in earlier posts) so to start him on AB's she first needed to put in a cannula. :( One hour she was in there with him and when she finally got a vein it was in his head :(.
I cried when I saw it, my beautiful baby's head, was one part of him untouched and now it had a drip in it :(... It is so unfair, I hate seeing my baby boy like this :(
Dr D is thinking that the surgeons will just have to operate without a contrast. She was going to talk to them today and I am hoping to see them this afternoon. Dr D seems to think surgery is likely in the next couple of days. So scared for my baby boy.
MUMMY
Sad and scared. Angry that my baby has to go through this.. Fucking sux. My baby is laying in an isolette with a fucking drip in his head and possibly about to have surgery. It really isn't fair. He is so brave. I love my baby so much.
Monday, November 7, 2011
Day 40
JETT
Well the morning didn't start so well, when I rang at 5.30 I was told he needed a cannula re site, however, when I got there Dr D said he is fine to have his meds orally so no need for another cannula!! He is only having caffeine and lasix through it anyway. Things would only change if he needed a transfusion or if he needed AB's again.
Jett has had a good day, oxygen down to 30% and we had a cuddle this morning :) 2hr skin to skin :). His oxygen wasn't too bad, he had a major desat when he was first put on me and his oxygen was put up to 40% but it was able to be brought back down to 34% :) He is still swinging a bit, but they try not to chase him with oxygen, they like him to come up on his own and today he has been recovering from desats quite quickly.
He had a microlax enema and did big poo's. I'm not used to changing pooey nappies lol.. He has been cheeky today, peeing on his sheets twice today while I was doing his nappy.. Creating washing for his Mama.. I love it though, it makes me feel like a normal Mum in a way lol..
He had an abdo U/S today and his tummy looked good. So at this stage, no contrast, no surgery. I think it will be left as long as possible. His platelets are still dropping they are only 59 now. Jett had a urine test to rule out CMV. (Cytomegalovirus). If he has it, it's not dangerous, it's really common, but they want to rule it out as apparently it can cause platelets to drop. They won't even treat it, if he does have it.
Next week he will be 32wks gestation, so he will be having an eye test for ROP (retinopathy of prematurity)... I don't want him to have it cos it will hurt him :(.. Mama will be there holding his hand and they normally give sucrose for pain relief, or EBM.. Jett will be having EBM on his dummy. When I left to come and have dinner he was so comfy on his tummy :) I'll be heading back soon :)
MUMMY
TMI post about boobs :)
So my nipples aren't getting better despite being on the hydrocortisone cream for 3 nights now.. So between myself and the lactation consultant, we decided it was thrush. I went to ORC for a script for diflucan, but it contraindicates with my heart condition so they said no, just stop taking the antibiotics and resume anti fungal cream. I have turned down the power of the breast pump and they seem a bit better so hopefully my body will recover soon. I am excited to be off all meds and finally have clean milk for my bub. (Not that he's feeding at the moment, but he will!) Apart from my nipple issues, I feel good today, I love snuggles with my babe :)
Sunday, November 6, 2011
Day 37, 38 & 39
JETT
Today Jett has been good, his ventilation rate has been weaned from 45 to 40 and his oxygen has been weaned down to 30%. It has been anywhere from 30 - 40% the last few days. He has had a few issues with cannula's tissuing so has had to have a couple of resites.. Not very nice. He now has a cannula in his ankle :( He hates it..
He had a weigh the other night and weighs 1560gms. He still has a bit of fluid though, so they are going off his previous weight.. He had an albumin transfusion yesterday, his level was at 19 and Dr D wants him tranfused if he goes under 20..
As far as his gut is concerned, not much change, Dr D is still concerned about some bowel inflammation so still doesn't want to do the contrast, he is being assessed on a daily basis, but Dr D will be back on tomorrow so we will see what happens.. Soon they may have to just do it, I'm not sure how long they can leave it. He can't even get off the ventilation til after the surgery, so in a way, I just wish it would happen so we can start moving forward again. Having said that I don't want to rush him. I trust that Dr D is definitely doing what's best for Jett :) The surgeons come on a daily basis aswell. Day 37, they put a cotton bud up his bum to try and stimulate him to poo. It was awful, Jett was crying so much and his little face went purple. It distressed me too. I hate seeing my babe that upset. It didn't work anyway, still no poo.
I haven't had a cuddle for 3 days, yesterday i felt he was too unstable and today I wasn't allowed because they changed his ventilation rate and wasn't sure how he'd cope with it, so it was best to let him rest. It's really hard though. I just wish I could be a normal Mum.. I'm hoping I get a cuddle tomorrow, since he has been pretty good today :)
MUMMY
I can't believe I have been living this life for 5wks. I have been living at Ronald Mac house, spending my days in the hospital and expressing 8 times a day for 5 weeks!!! I am hoping only another 10wks to go then we can come home..
As Jett gets bigger and stronger, it's actually becoming harder for me. I watch how much he fights and know how angry and uncomfortable he must be. It's great he's getting stronger, it's great he fights but my god it's hard to watch him fight his tube and knock hands away when the nurses or dr are doing something.. He had his tube and NG tube changed today, he hates it and they have to hold his arms and legs down because of how much he fights. It's awful to watch, but I always make sure I'm there, even if it's just talking to him. Today though a nurse let me touch him and hold his hand while they were doing it. Most nurses don't. It's funny how just holding my son's hand can calm us both. He actually handles it quite well. He was only put up to 40% oxygen. Although they did increase his rate back up to 45 just for that, because it is so traumatic. His little face gets red from them pulling the tape off. Makes me so sad to see him like this. I just want to protect him and I can't :( I can't wait til I have him home. I am so proud of my lil Jett Plane he is so brave :)
Today Jett has been good, his ventilation rate has been weaned from 45 to 40 and his oxygen has been weaned down to 30%. It has been anywhere from 30 - 40% the last few days. He has had a few issues with cannula's tissuing so has had to have a couple of resites.. Not very nice. He now has a cannula in his ankle :( He hates it..
He had a weigh the other night and weighs 1560gms. He still has a bit of fluid though, so they are going off his previous weight.. He had an albumin transfusion yesterday, his level was at 19 and Dr D wants him tranfused if he goes under 20..
As far as his gut is concerned, not much change, Dr D is still concerned about some bowel inflammation so still doesn't want to do the contrast, he is being assessed on a daily basis, but Dr D will be back on tomorrow so we will see what happens.. Soon they may have to just do it, I'm not sure how long they can leave it. He can't even get off the ventilation til after the surgery, so in a way, I just wish it would happen so we can start moving forward again. Having said that I don't want to rush him. I trust that Dr D is definitely doing what's best for Jett :) The surgeons come on a daily basis aswell. Day 37, they put a cotton bud up his bum to try and stimulate him to poo. It was awful, Jett was crying so much and his little face went purple. It distressed me too. I hate seeing my babe that upset. It didn't work anyway, still no poo.
I haven't had a cuddle for 3 days, yesterday i felt he was too unstable and today I wasn't allowed because they changed his ventilation rate and wasn't sure how he'd cope with it, so it was best to let him rest. It's really hard though. I just wish I could be a normal Mum.. I'm hoping I get a cuddle tomorrow, since he has been pretty good today :)
MUMMY
I can't believe I have been living this life for 5wks. I have been living at Ronald Mac house, spending my days in the hospital and expressing 8 times a day for 5 weeks!!! I am hoping only another 10wks to go then we can come home..
As Jett gets bigger and stronger, it's actually becoming harder for me. I watch how much he fights and know how angry and uncomfortable he must be. It's great he's getting stronger, it's great he fights but my god it's hard to watch him fight his tube and knock hands away when the nurses or dr are doing something.. He had his tube and NG tube changed today, he hates it and they have to hold his arms and legs down because of how much he fights. It's awful to watch, but I always make sure I'm there, even if it's just talking to him. Today though a nurse let me touch him and hold his hand while they were doing it. Most nurses don't. It's funny how just holding my son's hand can calm us both. He actually handles it quite well. He was only put up to 40% oxygen. Although they did increase his rate back up to 45 just for that, because it is so traumatic. His little face gets red from them pulling the tape off. Makes me so sad to see him like this. I just want to protect him and I can't :( I can't wait til I have him home. I am so proud of my lil Jett Plane he is so brave :)
Thursday, November 3, 2011
Day 36 - Cuddles are oh so nice!!!
JETT
Jett is doing well today, not as many desats today.. He had his tube re taped but Mummy was there with him, he coped quite well with it..
He has been so alert today, opening his eyes wide and having a real good look around. My baby is growing up! He has lost heaps of fluid so is looking really really good :)
Dr D came and spoke to me today and explained that at this stage she is still not happy to do the contrast study as his bowel is still showing signs of inflammation so she thinks the contrast could do more harm.. She discussed with the surgeons the possibility of just operating without the contrast but they weren't happy to do that because they don't want to miss anything that the contrast could pick up, so it's a balancing act at this point.. Dr D said next week, it will most likely be done whether he is better or not, so hopefully the inflammation goes.
This afternoon we had cuddles.. 4hrs of skin to skin bliss. We love cuddles :)
Now I'm just at home (well Ron's) feeling nice and relaxed after my cuddle. I'll go back in about an hour to express and read his bedtime story then BED :)
MUMMY
Oh dear, where to begin? So Mum left today, I really wish she didn't have to go, she helped me so much and it was so nice having her here. I know she'll be back though.. As if she can stay away from her lil Jettski!! Lol..
I had a psychologist appointment today, that was good, I spoke about Taite and Seth a bit. They would have been 3 this month. I am finding it harder the closer it gets. Especially with the amount of twins in NICU. I have no idea what I will do for their birthday yet, but I'll figure it out.
TMI paragraph about boobs.....
Physically I am still really run down, I have had chronic thrush on my nipples for about 2wks and it's just not getting better. I'm doing all the right things, so in the end the registrar from ORC (Obstetric Review Centre)spoke to a dermatologist for me. She recommended I stop the antifungal cream and I am prescribed hydrocortisol cream and they took a swab. They think maybe I have some sort of allergy or contact dermatitis. They also took a swab to rule out infection although that is unlikely because I am on loads of antibiotics due to this retained product.. Anyway hopefully this will all be resolved soon because it makes expressing even more painful than it already is...
Jett is doing well today, not as many desats today.. He had his tube re taped but Mummy was there with him, he coped quite well with it..
He has been so alert today, opening his eyes wide and having a real good look around. My baby is growing up! He has lost heaps of fluid so is looking really really good :)
Dr D came and spoke to me today and explained that at this stage she is still not happy to do the contrast study as his bowel is still showing signs of inflammation so she thinks the contrast could do more harm.. She discussed with the surgeons the possibility of just operating without the contrast but they weren't happy to do that because they don't want to miss anything that the contrast could pick up, so it's a balancing act at this point.. Dr D said next week, it will most likely be done whether he is better or not, so hopefully the inflammation goes.
This afternoon we had cuddles.. 4hrs of skin to skin bliss. We love cuddles :)
Now I'm just at home (well Ron's) feeling nice and relaxed after my cuddle. I'll go back in about an hour to express and read his bedtime story then BED :)
MUMMY
Oh dear, where to begin? So Mum left today, I really wish she didn't have to go, she helped me so much and it was so nice having her here. I know she'll be back though.. As if she can stay away from her lil Jettski!! Lol..
I had a psychologist appointment today, that was good, I spoke about Taite and Seth a bit. They would have been 3 this month. I am finding it harder the closer it gets. Especially with the amount of twins in NICU. I have no idea what I will do for their birthday yet, but I'll figure it out.
TMI paragraph about boobs.....
Physically I am still really run down, I have had chronic thrush on my nipples for about 2wks and it's just not getting better. I'm doing all the right things, so in the end the registrar from ORC (Obstetric Review Centre)spoke to a dermatologist for me. She recommended I stop the antifungal cream and I am prescribed hydrocortisol cream and they took a swab. They think maybe I have some sort of allergy or contact dermatitis. They also took a swab to rule out infection although that is unlikely because I am on loads of antibiotics due to this retained product.. Anyway hopefully this will all be resolved soon because it makes expressing even more painful than it already is...
Wednesday, November 2, 2011
Day 35
JETT
Quick one today, Jett has been stable. Contrast will most likely be on Friday, surgery if needed will be next week.. The uncertainty is driving me nuts, but he is ok at the moment and they want him to be the best they can if he does have to have surgery..
He had a wash and weigh today, he loved being washed, normally he hates it, but he was so chilled it was cute! His new weight is 1495gms. It is good that he has lost about 50gms in fluid :)
He is now on daily lasix and had a blood transfusion today as his HB was 80. 5 minutes into the transfusion his cannula tissued.. I was so upset that they had to resite it. It took them over half an hour to get a vein :( Then when they FINALLY got it in a new baby had arrived in the room so I had to leave because there was a sterile procedure. I just wanted to be with my baby and was devastated I missed doing his 6pm cares.. It is so awful, he has no pain relief, it must hurt him, especially when they try and try to get veins.. By the time I went in after the sterile procedure, he was fast asleep on his tummy looking quite comfy.. I stayed for about an hour and a half then came for dinner. Now I am about to have a sleep and go back for his midnight cares..
MUMMY
I am ok now, I was extremely distressed when he had his cannula resited though.. I couldn't make it through today without tears. I wonder when that day will come?
I am very spoilt, I have so many friends who have made me lovely meals and sent me gifts.. I appreciate it all so much!!!
Mum leaves tomorrow, not sure how I will cope without her, but I will somehow.. My brothers need her home, so I guess I have to share..
Quick one today, Jett has been stable. Contrast will most likely be on Friday, surgery if needed will be next week.. The uncertainty is driving me nuts, but he is ok at the moment and they want him to be the best they can if he does have to have surgery..
He had a wash and weigh today, he loved being washed, normally he hates it, but he was so chilled it was cute! His new weight is 1495gms. It is good that he has lost about 50gms in fluid :)
He is now on daily lasix and had a blood transfusion today as his HB was 80. 5 minutes into the transfusion his cannula tissued.. I was so upset that they had to resite it. It took them over half an hour to get a vein :( Then when they FINALLY got it in a new baby had arrived in the room so I had to leave because there was a sterile procedure. I just wanted to be with my baby and was devastated I missed doing his 6pm cares.. It is so awful, he has no pain relief, it must hurt him, especially when they try and try to get veins.. By the time I went in after the sterile procedure, he was fast asleep on his tummy looking quite comfy.. I stayed for about an hour and a half then came for dinner. Now I am about to have a sleep and go back for his midnight cares..
MUMMY
I am ok now, I was extremely distressed when he had his cannula resited though.. I couldn't make it through today without tears. I wonder when that day will come?
I am very spoilt, I have so many friends who have made me lovely meals and sent me gifts.. I appreciate it all so much!!!
Mum leaves tomorrow, not sure how I will cope without her, but I will somehow.. My brothers need her home, so I guess I have to share..
Tuesday, November 1, 2011
Day 34
JETT
We had cuddles today!!!! The contrast imaging will probably be Thursday, from speaking to the Dr (although Jett's Dr wasn't here today)nothing at this stage is certain, just waiting waiting.. He has had a fairly good day today, his morning blood gas was good so his rate was reduced to 45 and his pressure (PIP) was reduced from 20 to 18 which is great news. He looks good, and loved cuddles with Mummy :)
We had skin to skin for 4hrs and we had a lovely sleep together. His oxygen has been swinging a bit, but mainly good. I am hoping it not the duct in his heart starting to cause trouble.. His oxygen support is ranging from 27% and has only been taken up to 32% today during movement and cares..
I can't believe I have forgotten to mention MY BABY SMILES!!! He has been smiling from 3wks old :) I swear it's not wind or a funny facial! (Ok it may be but it looks soooo cute! Especially when I say "I love you Jett" and he does it!)
I think that's about it for today, not much else has changed, contrast imaging will probably be Thursday, not sure about anything else...
MUMMY
I feel good today, cuddles are so good.. After cuddles I went shopping and bought some tops and a skirt. I felt normal and because I had such lovely cuddles I managed to enjoy shopping and didn't feel anxious once.
We have a really really good crew in our room. We all chat and share our experiences. It was really special today to the parents of one bub have a proper big bath :) It will be a sad day for me when they graduate to the next room,(for my own selfish reasons of course!! I love having a laugh with the parents :) but it is so beautiful to see them doing so well, we are really happy for them.. On the other hand though, one of the Mum's had a rough time with her boy last night and today, it is so sad to see :( and it is s a stark reminder that things can change so quickly and at any time. It is a very emotional place to be..
We had cuddles today!!!! The contrast imaging will probably be Thursday, from speaking to the Dr (although Jett's Dr wasn't here today)nothing at this stage is certain, just waiting waiting.. He has had a fairly good day today, his morning blood gas was good so his rate was reduced to 45 and his pressure (PIP) was reduced from 20 to 18 which is great news. He looks good, and loved cuddles with Mummy :)
We had skin to skin for 4hrs and we had a lovely sleep together. His oxygen has been swinging a bit, but mainly good. I am hoping it not the duct in his heart starting to cause trouble.. His oxygen support is ranging from 27% and has only been taken up to 32% today during movement and cares..
I can't believe I have forgotten to mention MY BABY SMILES!!! He has been smiling from 3wks old :) I swear it's not wind or a funny facial! (Ok it may be but it looks soooo cute! Especially when I say "I love you Jett" and he does it!)
I think that's about it for today, not much else has changed, contrast imaging will probably be Thursday, not sure about anything else...
MUMMY
I feel good today, cuddles are so good.. After cuddles I went shopping and bought some tops and a skirt. I felt normal and because I had such lovely cuddles I managed to enjoy shopping and didn't feel anxious once.
We have a really really good crew in our room. We all chat and share our experiences. It was really special today to the parents of one bub have a proper big bath :) It will be a sad day for me when they graduate to the next room,(for my own selfish reasons of course!! I love having a laugh with the parents :) but it is so beautiful to see them doing so well, we are really happy for them.. On the other hand though, one of the Mum's had a rough time with her boy last night and today, it is so sad to see :( and it is s a stark reminder that things can change so quickly and at any time. It is a very emotional place to be..
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