Christopher’s Journey.

I got another cuddle with Christopher today. He had his urinary catheter removed this morning and will be extubated tomorrow. Its still a battle to try an restrain him from removing the tube himself, even with mittens on he insists on trying to remove it. He is very strong and has one hell of a grip on him, I think he is going to grow up to be a very stubborn, wilful person (a bit like his mother!) Chris is also being fed 20mls of milk every 3 hours.

Weight – 2790 grams

They are still weaning Chris off the Fentanyl with looking at removing the ventilator on Thursday or Friday. He is doing really well and is very alert when he wakes up. Chris is now being fed 10mls of milk every 3 hours.

Weight – 2700 grams

The nurses unbandaged Chris’ legs and removed his rectal catheter. I got to change my first truly dirty nappy today (I know it seems weird to get excited over the sight of poo!!) so its good news that he bowels are working and that the operation was a success. He still has his stitches in, and these probably won’t be removed until day 10 after the op. Chris is really alert and awake for a lot of the time we spend with him, which is just lovely. He watches us as we talk to him. He is also getting very over his breathing tube and more than once, we have had to remove his hand from the tube as he attempts to pull it out. The Dr’s are entertaining the idea of removing the breathing tube in the next 48 hours. I believe though if our kid has anything to do with it, 48 hours is going to be a stretch!!. Chris is now being fed through a gavage tube (through his nostril and into his tummy) every 3 hours 5mls of milk.

Weight – 2650 grams

Length – 44.8cm

HC – 32.3 cms

Chris’ legs were still bandaged mermaid style and he was still pretty bombed out from the Fentanyl (painkiller), but he would wake up occasionally before drifting back off to sleep.

Chris had a good night and seemed to be fairly comfortable, he still hates the suctioning that the nurses do every 4 hours to clear out the gunk from his lungs and nose & mouth, but he seems to appreciate it once it has been completed. Our little boy woke up again today and looked at us with his deep blue eyes, it makes me wonder what he is thinking.

Christopher had his second operation today at 11 days old. This was to fix the fistula, and do the full reconstruction of his bottom. This surgery was to take 4-5 hours, but Chris was back in 3. He coped very well and is currently recuperating with his legs wrapped up in a mermaid formation to allow healing and reduce movement. This little boy keeps teaching me new things every day and manages to show me just how brave he is. Christopher started off the end of week 2 with blood transfusion of 40 mls to replace the 20 mls of blood he lost during his operation. 20mls in the scheme of things doesn’t sound like much but when you only weigh 2550grams its quite significant. He was quite pale after his op and his blood pressure dropped a bit too low, and his colour has now returned and he is looking much better. He is also resting comfortable, thanks to some fine pain relief.

Christopher had a second urology test to confirm diagnosis from yesterday. Because he was such a good boy, the radiologist gave Chris jelly beans, stickers and a scented pencil, for remaining still during the test. Greg and I also had another cuddle with our little man, which was just lovely. He also opened both his eyes for the first time and was looking at both Greg and I as we were talking to him.

Christopher had a test to check his good (left) kidney and its function. They believe that he may have some kidney reflux and contrast pumped up into the kidney showed that there is indeed kidney reflux as well as a fistula (connection) between the ureter and the bowel. This will need to be fixed via surgery. Christopher was also wrapped for the first time and loved it. He now cries when we unwrap him to do his “cares” (take his temperature, wipe his eyes, change his nappy and move the O2 sensor from one foot to another – these are done every 4 hours and we do this ourselves when we are with him.) He kicks his feet, punches his fists and screws up his face and cries but we can’t hear any sound because of the breathing tube.

Weight – 2560 grams

Length – 44.5cm

HC – 32.3cm

Christopher had an MRI to look at his brain, spine, muscles and bowels in preparation for his operation. His brain appears normal on the MRI, his muscles and nerves appear normal around his spine, but he does have some scoliosis  (which won’t need to be fixed until Chris is in his teens). The surgeon came around and advised that he was satisfied with what he saw on the MRI scan and planned to do a full reconstruction of his bottom, when he did the operation. Greg and I also got cuddles (my second after a brief hold after birth and Greg’s first) with Christopher. I can’t believe how one little person can make you so very happy and complete. It truly was a magical moment for us both.

After coming off the paralysing drugs on Sunday, Chris started getting very animated. Grasping at hands and opening his left eye (his right eye still puffy from the drugs). Christopher has had a partial collapse of his left lung and is having gentle physiotherapy every 4 hours to help remove the excess mucus and help inflate the lung again. The collapse was due to the paralysing drugs and having the breathing tube in, as he is unable to cough up any residue. Christopher also had a routine Ultrasound to check for evidence if bleeds or blood clots in his brain, his brain appeared normal.

What a week, Chris’ first week has been.

After being in a hurry to enter the world in the first place, he was also in a hurry for his first operation. At 5.5 hours old, Christopher went to the Operating Theatre for a 4 hour operation to attach his oesophagus to his tummy. When I went to see him the next day, he was intubated and was paralysed. They had his neck flexed downward to enable the wound to heal properly. This was most important as they wanted the oesophagus to knit well to ensure that there would be no leaks and cause problems with feeding later on. He also has a small drain in his tummy to allow gas to escape, as he is not pooing at the moment, because of some bowel problems (which will be fixed later this week).

The Dr’s were worried about his left kidney (the right one is multi-cystic and will never function), as it is on the small side and not as well formed as a kidney should be. it had a little air in it which could be due to reflux or it being connected to the bowel, which of course could increase the chance of infection. The week has showed that Chris’ urine input is increasing, which is a big positive, but only time will tell how long the kidney will last (2, 5,10 years or forever??), and we will have to wait until the Renal Specialists can do some more tests, but its unlikely they will be able to provide us with a definitive answer, so while the kidney is a concern, we will just have to wait and see. It may surprise us all.

On day 3 they reduced the oxygen being pumped into Chris’ lungs. he was on 50% O2, but is now down to 21% O2, which is what we all breathe.

They took blood for genetic testing, to see if they could pin-point, a syndrome that may be affecting Chris’ (but on the other hand they may not reveal anything) we are still waiting on the results.

Chris’s has been under lights for Jaundice a couple of times, and he has these very groovy “glasses”, that he wears to protect his eyes.

Chris had to have his intubator tube adjusted as he was getting a little distressed when being turned over, they took a chest x-ray and saw that it had moved in his lungs and that’s why he sats were going all over the place. He is a lot more settled since they have fixed that up. He is also having physiotherapy every 4 hours on his left lung as it had partially collapsed. The gunk that they managed to suck out of his lungs after the physio, was impressive as well as a bit of a worry, but he responded very well to it and is now breathing partly by himself and partly by the machine.

Day 5 they removed the drain from Chris’ oesophagus operation and he has a very neat 10 cm incision just under his right lung, which will not be visible when he gets bigger, not that there is anything wrong with having a few scars, I anticipate that Chris will show off his “War Wounds” to the girls when he gets bigger!

Day 7 Chris was weaned off the paralysing drug and was starting to move about a bit, he will grip on your finger if you place it in his hand, which is just amazing, it melted my heart when he did that for the first time. Yesterday, I spent nearly the whole time with him holding my fingers whilst he slept on and off.

The cheeky little bugger opened up his left eye and looked at me a few times and his eyes are a very dark blue at the moment.

Christopher also had a Brain Ultrasound to make sure that there were no bleeds or blood clots on the brain. We are still waiting on the results, but the sonographer advised that she couldn’t see anything out of the ordinary. Hooray – another positive for Chris!!

The staff are taking Chris down to have an MRI this morning. It sounds like a logistical nightmare, as they need to take down his cot and all the apparatus surrounding him down to the Radiology Department. He will also be placed under a light anaesthetic to make sure that he is absolutely still for the scan. The MRI will be used to determine the structure of his bowel and they will also look at his spine whilst he is there. The structure of the bowel is important, as it means the surgeons can decide how they are going to tackle the next operation. As they wish to limit the amount of operations on the bowel as the more they play around with it, the less successful subsequent operations may be with scar tissue etc.

Christopher’s main Dr is realistically confident with his progress so far. He is doing well enough to move on to the next step, especially seeing as the Dr’s were very concerned about how Chris would cope with everything, considering there are so many things that are wrong with him. The Dr’s are also very happy with the function of his lungs, heart and kidney function at the moment. Obviously every thing needs to be taken day by day and week by week.