Day 109 & 110

Day 109

Jett and I had an awful night last night. Jett cried for 3hrs straight, from 11pm til 2am. It was really heartbreaking not being able to pick him up and comfort him. :( All I could do was rock his cot, sing to him and hold his hand or put my hands on his body. It didn't help that the nurse was a bit patronising, she kept telling me to go home and get some rest. Yeah, like I'm going to go sleep while my son is in distress.. There is no way while I am alive Jett will knowingly be left to cry all alone. She certainly didn't offer to sit with him, Which is fine, he was in such a state I wouldn't have left anyway, but with some nurses you just know that they will sit with your babe to comfort them if you're not there. I definitely didn't trust her to do that. So for 3hrs I tried to do my best to settle him. Nothing worked. I asked the nurse to reposition him and that worked for all of 2 seconds. I tried everything, rocking, singing, talking, I took my hands off him in case he didn't want to be touched and still nothing. The nurse suctioned him, checked his IV sites I made sure he wasn't laying on anything and I still couldn't find anything that would have made him uncomfortable. He just kept crying. I wanted to hold him so much. Eventually he took the dummy, (he didn't even want that for ages) and I held it there until he was fast asleep. A couple of times I thought he'd calmed down but it never lasted long. It was so distressing and really distressing not being able to do anything. One of the other nurses came down to the room and asked why I was there so late and when I said Jett wouldn't settle she asked his nurse if I could pick him up but the nurse said no because of what happened with his central line :(. I hate this, I hate that my son was so upset and I couldn't comfort him :(.. I hate that I felt pressured to get him to sleep so I could go. FUCK being in hospital with people watching me with my son. I just want to be at home with my baby with him in my arms. The way it should be!

Today was a much better day. Little Jett wore himself out last night and slept all morning lol. I did too. I just put my neck pillow on his cot and rest my head down. It's not the most comfortable, sitting in a chair with my head on his bed, but it works. His oxygen had come up to about 30% during the day, but when he settled it came back down to 21% again :)After quiet time he had his wash and weigh, he weighed 3858gms so he had lost a bit of weight. He was really settled tonight which was good, so I managed to get home and get some sleep.

Day 110 - Cuddles :)

Today was another good day for Jett. He was settled all day sitting on only 21% oxygen with sats of 100 :)

I had a chat with the surgeon today, Dr R. She is the one who did his op last time and will be doing it again. Jett wont be having the 3rd contrast, she is pretty happy there isn't a fistula between his bladder and bowel which is great news..

I signed the consent form for surgery which is booked for next week. We spoke about the risks and what she is hoping to do. It's really complicated. She said the contrast showed a blockage high up from the stomach. She said if she makes a stoma that high he wont have enough bowel to absorb nutrients, basically the food will go in his stomach and pour straight out. So what they want to do is kind of form 2 stomas. This is really hard to explain as I don't fully understand it myself, but I'll do my best to explain what I understand of it.. Basically he'll eat, it'll go into his stomach and come out of the stoma formed. Gastric juices and partly digested food will then go back into the bowel through another stoma and then the nutrients can be absorbed..(It's called re feeding) They will then wait til he's bigger and stronger and hopefully go back in and reverse the 2 stomas and connect his bowel.. Hopefully.. All this depends on if she can even get in to do that. Dr R said she is very concerned about what could happen while she is trying to untangle his bowel. She said the risks are: Bleeding out, damage to liver and holes in the bowel. She said they may not be able to do anything because getting through all the scarring and adhesions is going to be a huge job and it's risky. I am scared, but I know she had to give it to me straight. Jett may not come out of this. The worst case scenario is that he dies on the table. They will have blood ready to transfuse, but she said with little babies and such a big operation, the risk of bleeding out is very real. That is my worst fucking nightmare. He can't die on the table..

So as you can imagine I was a mess this morning. We have been waiting nearly 10wks for this surgery and now it's here I'm scared. I know it will go one way or the other. I need a fucking miracle. I need to bring this baby home.

Today wasn't all bad news though. Jett had an echo and the duct in his heart has closed.. All by itself! He didn't even have medication! I'm hoping that this is a sign of things to come.. :)

Jett and I had snuggles this afternoon. He's so big now I can't believe it. I just sit and stare at him, kiss him and I am savouring each second with him. I love him so much. He was so settled during our cuddle. Still only on 21% oxygen and sats of 100 :)..

As far as surgery goes, he is in the best health he can be for it. His ventilation is remaining very stable and there aren't really any other concerns.. The registrar is going to speak to Dr D about giving him vit K on Saturday rather than the Thursday it would be due. That would give his blood the best clotting result when he has his coagulation factors tested before his operation.

Jett had his head circumference done today, it is 37cm.. He has the most kissable head :) He is back in his cot now, not the open care system :) When I got in this morning he was crying, cried all through his nappy change then we sat him up. He was so happy. He has gorgeous inquisitive eyes that check everything out. I'm so blessed to have Jett. I had a nurse last night tell me that Jett has definitely become part of many peoples hearts. She was saying that he is very loved by many of the nurses there and they are all cheering him on :) Jett has touched the lives of so many, people that know him, or people that know about him. He just has to get through this operation. I have to believe in miracles :. He is such an amazing little boy, it is a privilege to be his Mama..

Day 106, 107 & 108 - One week adjusted!

Day 106 - Cuddle day

Yay, Jett and I finally had cuddles. We hadn't had a cuddle since Sunday :) It was so nice :).. Jett's oxygen has come down heaps and he was fluctuating between 23 and 30% which is great. Dr D thinks it could be the antibiotics helping.(I can't remember if I mentioned this but Jett was put on ampicillin and gentamicin for e coli.)

Jett also got weighed today. Normally weighs and cuddle are on alternate days but both hadn't been done for ages. He weighed in at 3870gms which is pretty good. He didn't lose weight which is great considering he was only on fluids from Saturday to wednesday! Jett's platelets were 201 and the rest of his blood results were pretty good.

No date for surgery as yet. Not even sure when the 3rd contrast will be

Day 107

I have hardly seen my baby today, there was a new admission so the room has been closed for most of the day. I have been there to do Jett's cares and give him a bath though.. The contrast stuff is coming out of all ends. He did a big spew last night and has mucousy stuff coming out of his bottom. I can't wait til after the surgery. When I saw the surgical reg last night I told her I wanted to have a meeting with the surgeons next week to discuss best and worst case, what they hope to achieve etc.. I think the main goal is to get Jett feeding, so hopefully they will go in and be able to form a stoma. They can get him feeding after that and worry about the rest later. I told Dr D that I am totally fine with going home with a stoma and an NG tube if necessary. I just want him home.. I'm scared of the upcoming surgery, but hoping that my strong brave little man will ok..

Day 108

This morning when I came in my baby was very unsettled so instead of having a cuddle in the arvo like I normally do I had one this morning to settle him. He loved his cuddle, I had him skin to skin and he was awake looking around. Then he did something that made my heart break... He attached to my chest and started sucking. Then when he realised no milk was coming out he kept moving his head and attaching to different parts of my chest :(.. He so wants to breast feed and I really want to feed him. I love that he has such a strong instinct to try and find the milk and latch on but it's so hard when he can't. I absolutely can't wait til this surgery is over and he can feed. The day we can breast feed will be the best. I had to end up giving him his dummy so he would stop looking for milk on my chest.

Our cuddle ended abruptly when I noticed blood all over my gown. Jett's central line had leaked. We put him to bed and the nurses took his dressing down. Luckily the line was still secure in his arm, but the catheter bit that leads to the IV pump had a hole in it. One of the consultants had to come and re thread it. So glad his central line was still ok. He only had it put in on Wednesday.

Even though we only had a short cuddle it was enough to settle Jett. We put him on his tummy and was fast asleep for 3hrs. His oxygen went down to 21% which is as low as it can go. 21% is the same as room air :)

Still no date for surgery, not even sure when the 3rd contrast study will be done. I do know that surgery will be fairly soon though. It's just a matter of getting the team together. I think they plan to have 2 surgeons like they did last time. I keep getting warned what a big operation it will be.. I know it will and I'm scared, but sometimes it's nice to be in a bit of denial and look past the surgery and see him recovered and feeding.. Hopefully that's what will happen. I have no idea what I will do the day of the surgery. I doubt I'll leave the hospital though. It'll be over at the kids. I hope they have good waiting rooms. Jett's first surgery was 3 hrs this one will probably be much longer. I just hope they can do something and he tolerates it well. I don't want anymore talks like last time. After his first op I got the "He may not survive the night" talk. He did though!! My little man is so brave and strong. He just has to be ok!

Jett's CO2 from his last gas was only 45 :) I am wondering if Dr D will bring his rate down on his vent. Maybe not, maybe she'll just wait til after surgery. Jett should be having an echo on Monday to check his duct. He was supposed to have it the other day but Dr D wants someone in particular to do it.

I think that's all that has been happening. Jett still looks very cute :)

Day 104 & 105 - Contrast x rays started!!!

Day 104

It was a busy day today. Dr D came in this morning to do Jett's central line, unfortunately after trying for over and hour she admitted defeat and called on Dr C the director. He planned to do it in the arvo after his contrast, but as it turned out we got back too late, so central line will be done tomorrow. Jett is now in an open care system again because the cot can be moved up and down. He looks so big in it now!

Jett has been started on gentamicin and ampicillin for the e coli in his tube. Dr D thinks that it could be why his oxygen requirement had gone up as it was up to 50%.. She has also ordered an echo to check his duct.. He had pink lung secretions again so more vit K was given and it was decided he will have a vit K shot fortnightly now.. His lasix has been dropped from 4 times a day to 2 :)

Jett's ventilation was increased because of the sedation so his rate is 50, Pip 24, peep 7 and oxygen around 50%.

The contrast

Jett was given 2 bolus doses and a continuous infusion of morph and medaz for the insertion of the central line so he was totally wacked out when he had his contrast. We went over to the children's at 1pm. I went in there with him and they started by putting contrast down his naso gastric tube. They x rayed and waited but it wasn't moving past his stomach. They decided they would wait an hour and a half then x ray again. So we waited in the x ray room til after 3pm then they started again. The contrast still hadn't moved past his tummy so they decided to put the contrast in his drain. The contrast went through up to his stomach, so they don't think there was a blockage, they just think his stomach doesn't work because he has never really been fed. Anyway, we don't get official results til all the contrasts are done. The next contrast will be an enema and will be done once the contrast from the NG tube and drain has gone.. Jett slept the entire time Lol. His first outing and he was fast asleep!!! I am getting impatient now and just want this all to be over. I think surgery will be next week..

Day 105, the 2nd contrast, very unexpected!

Jett was still a bit sedated this morning, even though his infusion was stopped last night. He was given another bolus dose before Dr C finally put in the central line though. The central line went in at about lunch and I spoke to Dr D after that and she told me Jett's next contrast may be this arvo which was really unexpected! Sure enough at about 2.30 I got the call and they said radiology wanted him over ASAP. So at about 3pm we were back at the children's hospital while my lil baby had a catheter in his bum and contrast through it.. The contrast didn't take long, it moved quite quickly so we were out of there in no time. Again, no official results but the contrast went through what looked like most of the large bowel :). Jett was asleep through the procedure, but he woke up on the way back.. He was wide awake looking around. I was pointing out trees out the window lol, he had his eyes squeezed shut because it was so bright! I think he liked his little adventure though :)

Not sure when the next contrast will be, I'm hoping it will happen quickly. The next contrast they will put a catheter in his penis and put contrast in his bladder. This is to check if there's a fistula between his bladder and bowel. My poor baby, it's so invasive :(..

Jett is still in his open care system, I'm hoping now his central line is in he can go back in his big boy cot. I want to be able to sit him up again so he can look around, and that can only be done in his other cot. He wont be able to have big boy baths anymore because his central line is right up the top of his arm, near his arm pit. It will be too hard to keep dry.. I am hoping for a cuddle tomorrow, I haven't had one since Sunday!

Jett's rate is back down to 40, pip, 22, peep 7 and oxygen came down a bit to 46%. Echo didn't get done today.

I think that's it, a very busy couple of days!!!

Day 102 & 103

Day 102 - Cuddle day :)

Jett was quite unsettled today, he wanted to suck on his dummy all the time. I don't mind, but because of the tube he can't keep it in his mouth so someone has to hold it. I hold it when I'm there but I worry about when I'm not there. The nurses haven't got time to sit and hold his dummy so he gets upset :( His oxygen has gone up to about 45% today which is quite high. We had cuddles in the evening and he was really settled, but after about an hour he was a bit restless. I still had him for 3hrs though, I'm not sure when I can have another cuddle..

Day 103

Well today Jett was supposed to have his central line out in and some bloods taken but the nursery was really busy with a new admission so it will be done in the morning. I am disappointed because I was hoping to get in a sneaky quick cuddle before Jett's contrast. No such luck :(

Jett slept most of today which was good considering he was so unsettled yesterday. I have been trying to settle him without his dummy and it has worked today. His oxygen requirement has increased again though today up to 50%. It's unusual considering he's not agitated or anything.. He is still needing fairly frequent suctions his lung secretions are still quite thick.

I thought Jett had another eye test today, but the Dr checked the notes and he was given the all clear with his eyes and doesn't have to have them checked for 6 months :) Makes Mama very happy :)Tomorrow will be a busy day with his central line and contrast x ray. I really hope everything goes ok.. Pray, light candles, send vibes, do whatever you believe could help us get good new tomorrow :)

Day 100 & 101!!!!!!!!!!!!

100 days!!!

Well today the nurses decorated Jett's cot with balloons that said happy 100 days and made a beautiful card which lots of the nurses and Drs signed :), he also got a blanket and a couple teddy's..

I got a date for Jett's first contrast xray. It will be on Tuesday. I was given dates later in the month but when I saw the surgeon she said that wasn't right, so she had them changed to when they were supposed to be, which is next week. Just to recap in case you have only recently started reading, Jett has to have an xray with contrast to see what's happening with his bowel. He will have to have 3 contrast x rays, the first one they will put dye down his naso gastric tube, then a few days later they will put some dye in his bottom, then a few days later they will put it in his drain, which sits in his small intestine. The x ray will show where the dye goes and hopefully show where the bowel is narrowed. It is possible some of the bowel has died so it should show that. Hopefully from there the surgeons will make a plan soon after to operate. What they want to do is open him up and untangle his bowel and be able to separate the bowel that has adhered to his abdominal wall and liver. Once they do that, we are hoping he will have enough good bowel to allow them to cut out the affected part and join the rest up so he can start having feeding and absorbing nutrients. It will be a huge operation...

They had to do a rectal biopsy on Jett today :( it involved just taking out 3 small pieces of bowel to rule out Hirschsprung's disease, which is a blockage of the large intestine due to improper muscle movement in the bowel. They think it' s unlikely that he has it, but just want to rule it out before he has this big op.. He handled the biopsy well, it is really quick and the sample they take is from a part that has no pain receptors.. Even so he was given panadol and breast milk and Mummy was there holding his hand..

I also managed to get a midstream urine catch, but the results of that aren't back yet.

Jett and I had a lovely 4hr snuggle in the night time :), so so relaxing. No place I'd rather be and a lovely way to spend his 100 day birthday.

Day 101 - Jett's due date!!

Today I walked in the nursery to see my baby sitting up!! It was so cute. The nurse raised the back of his bed up and he was sitting up wide awake watching his mobile. He is so interactive. He loved it :) After that he had a big boy bath. The nurse made the water deep and he just floated in it. He splashed his arm and gave little kicks.. Very cute :)

After his bath the dressing of his central line was taken down because the tape was a bit tight around his arm. Unfortunately his central line had split so it had to be taken out. This means he has to have a new one because that's how he gets his nutrition :(.. It wont be done til Monday though, in the meantime he is just having fluids through an IV. The IV went in really easily, now he's older and his veins have had time to recover.. So next week will be a huge week for my baby, Monday he'll have central line and he also has to have bloods which involves having an arterial stab, then Tuesday it's off to the children's hospital for his x ray!!

I am really scared about the coming weeks, but kind of glad things are starting to move. We have been stagnant for so long. I know things could go either way, I'm just hoping it's the start of Jett's recovery and we can start looking forward to getting him home!!!

Some pics of my baby sitting up :)

Day 97,98 & 99

Well, the last few days have been uneventful. That's good, boring and uneventful is what we want :) The contrast xray is definitely next week, but no date or time yet. It's possible I could just walk in one morning and they tell me it's that day. I hope not, I need at least 24hrs to mentally prepare for it! I'm really getting nervous about upcoming surgery...

Jett's oxygen saturation parameters have gone up again since he is full term. Dr D wants him saturating between 92 and 95%. This meant at first his oxygen requirement came up to about 35%, but today it's back down. He hangs between 27 and 30%.

We had lovely cuddles last night for nearly 4 hours. By the time he goes back to bed I'm dehydrated lol, I don't care! I love love love cuddles with my boy!

He had his blood gas this morning and his CO2 was 63 which is really good for him :) His potassium is good still too. His urine out put is still great averaging around 90mls every napy change which is normally 6hrly.

Today he had his first ever big boy bath! Her loved it. He was crying during the transfer but as soon as he was in the water he relaxed straight away! He was splashing one arm about, the other had to be held above the water because of his central line. He had me bathing him, 1 nurse holding him and the other nurse holding his central line and ventilation tube! He will hopefully alternate now between sponge baths and big baths. His weight today was 3832gms :)

Dr D wants us to get a midstream urine sample. So each nappy change I stand there with a sterile jar waiting to catch his wee. Cheeky little monkey wont wee for me though! Normally he loves to wee as soon as the nappy is off, but not now we actually want him to! The reason Dr D wants the midstream is because she wants the cleanest sample possible to try and determine if there is bacteria in his wee, or if it's just on his skin..

My Mum and grandma come today :) Gana has never met Jett before, it's so exciting!

Day 94, 95 & 96 - Happy new year!

Not a lot has happened over the last few days, Jett had cuddles on new years eve in the arvo, he was wide awake and very alert :)He slept the new year away though, I was there at the stroke of midnight and he was fast asleep :) Ventilation is remaining stable he is on about 29% oxygen and up to about 33% for cares etc..

He had his wash and weigh yesterday he weighs 3685gms but he looked like he had a bit of edema, they are using 3590gms as his working weight. Since he has been on the potassium sparing diuretic they haven't needed to add potassium to his TPN, he has had blood gases the last 3 days in a row to check his potassium levels and they have been good. His CO2 has been much better since his rate has been increased to 40, his CO2 was 65 yesterday and about 71 today I think.

Today Jett has another eye test :( they are going to do his first though because it is cuddle day again. I was supposed to have him after his arvo cares but now I have to wait til they have done that. I am hoping a cuddle will settle him though after the trauma of the test. I hope it makes me feel better too,I feel like crap, I'm exhausted and emotionally drained. I am feeling very anxious when I have to leave Jett now he is more awake. He has been totally off the morphine and medazalam since Friday night.. He is so alert and a real wriggle worm. He is so beautiful, I love him so much, I need to have him home, my heart just aches to have him in my arms. I have been having trouble sleeping even though I am so tired. It's so awful and unnatural to leave my son and I hate the thought of him crying without me there to comfort him. I can't wait for the day he is home so I can just snuggle him all day and night, I want to be able to sleep next to him not in a different building, I don't want to have to leave him ever unless it's my choice and I feel ok to do do it. I hate having to choose between sleeping and being with my son, eating and being with my son. I just want a normal life with my baby. I want it to be how it should be.

New years even snuggles :)