Friday, 28 May 2010

Home!!

The babies are finally home! After 16 weeks and 6 days in hospital, we were released at lunch time on Wednesday. It feels so good to have them here, and we are already fitting into a nice routine.

I am exhausted but happier than ever :)
Me, Harry, Joe



Millie and Harry


Joe and Harry



Joe and Harry




Harry




Saturday, 22 May 2010

Jason and the boys

Jason and Joe



Jason and Joe, again


Jason and Harry


Due Date

Today is the day the babies were officially due to be born. Not much has changed in the past week or so really. Harry continues to be in air only, and Joe is spending more and more time in air, mainly needing oxygen for feeding. On Monday the oxygen is being installed but the way Joe is going, we won't even need it. He was only in oxygen for about half an hour all day today which is wonderful.

Both babies continue to take around half their feeds by bottle and the other half by tube. If I am completely honest, I think both could manage bottles all the time if they had to, but I suspect that it's easier for the nurses to put the milk down a tube than take the time to bottle feed as both are quite slow.

We will have a few appointments once the babies are home. Harry will have to go and have blood taken weekly for a while as he is still on diuretics and sodium supplements and they have to monitor the levels carefully, but hopefully he will be weaned off them in around a month or so. Both will also be seen by the cardiologists to to check their heart murmors have resolved fully, and I suspect Joe and possible Harry will need to be seen again to have their eyes looked at. Oh, they will also be seen in the audiology clinic, and Joe has a follow-up appointment for his hernia. Phew.

Once they are home, we will have open access to the childrens ward at the hospital in case I am ever worried, or they seem poorly. This means I can bypass seeing the GP or going through casualty which not only will save time, but also will limit their exposure to germs.

The official coming-home date has been set for Wednesday, after their eye exams. We could have come home on Tuesday but it would have meant being back on the unit for 7am on Wednesday for the eye test. With the best will in the world, I'm not sure I could have got us all up, fed, dressed and there for that time so agreed it was best to wait a day.

Jason came to visit today and had lovely cuddles. Pics coming up.

Weights on Wednesday were: Harry 6lbs 11oz and Joe 5lb 13.5oz. Huge boys now!

Joe

Isn't he just the most adorable thing in the world?
video

Tuesday, 18 May 2010

Day 111. Not that I am counting or anything...

Things are up and down with the babies at the moment. On Saturday Harry needed to go back on oxygen for a little while because his saturations weren't picking up very well. A little whiff of the airy stuff helped him out and after a few hours he was back in air. Joe is still in oxygen most of the time, but manages short amounts of time in air.

Both babies completely flunked their hearing tests. A big, fat fail for them both. We will be seen in the audiology clinic for more in depth tests to see whether their hearing has been affected but the sooner these things are detected, the better. Apparently babies from as young as 6 weeks can be fitted with hearing aids.

Harry seems to have quite a pronounced squint in his left eye. I only noticed it yesterday, but his right eye can look directly at me and follow my face when I move, and his left eye just kind of rolls around a bit. A lot of babies have poor eye control when they are little but the nurses are going to mention it to the eye lady tomorrow when she does her weekly visit.

Finally, we have news of a homecoming date. Next Tuesday I think is the day we are looking at for bringing our little people home. So that is just one week away! On Wednesday the community nurses are coming to the hospital to talk with me as both babies still have feeding tubes in, the home oxygen is being arranged, and on Friday is the discharge meeting. Exciting, scary times.

Friday, 14 May 2010

Annie, eyes, brains, and weights.

Tonight we have a house guest in the shape of Annie, the resucitation doll. Our homework was to watch a DVD teaching us life-saving skills in the event a baby stops breathing, and to practise on Annie. I think David and I both have it mastered, but who knows if we'd be able to do it in a real emergency, hopefully we will never find out.

Joe is still managing to have all his feeds from the bottle. He is certainly showing signs that he is getting tired though, and was desaturating quite a lot for his last feed this evening so I wouldn't be surprised to find him with a feeding tube in tomorrow when I go in. His hernia seems to be healing well. It's still covered with a protective dressing, and his testicles are very bruised but he doesn't seem in any pain or discomfort from it. We had our first experience with proper vomitting today. I thought it would be a good idea to try and stretch their feeds to four-hourly but apparently Joe's tummy didn't agree and he threw up the extra milk with quite some force, all over me, himself, his bed and the floor. We won't be trying again for a while after that little episode!

Harry is still not needing oxygen and is taking alternate feeds by bottle. He is generally much sleepier than Joe but I am sure he smiled at me this evening. He was laid on my lap and I was singing to him and he looked right at me and smiled a bit. He hadn't even had a bottle so I know it wasn't wind. He obviously knows a great voice when he hears one and wants to show his appreciation ;)

My plan all week was to take the babies out for a walk tomorrow so every day I have been asking to talk to the doctors about it. My plan wasn't so much to ask their opinion, but to tell them that is what is happening, but I'm having second thoughts now. The doctors and nurses don't think the babies are stable enough (I do!!) and their suggestion was that a nurse comes with us. Thanks, but no thanks. They have fed me so many horror stories this evening that I don't want to be put in a position where they can say 'I told you so..' so I will just have to bide my time until everyone is singing from the same hymn sheet. The main problem seems to be that doctors always look on the negative side and see problems with everything, and I always think positively and can't imagine anything going wrong, ever. We need to meet in the middle, but at the moment the doctors aren't budging and unfortunately I'm not really in much of a position to dig my heels in in case I get it wrong.

The babies eyes were looked at again this week. Harry's eyes seem completely normal, and all signs of ROP have resolved. He will be seen again in two weeks with a view to it being the final time he needs looking at. Joe is still to be seen weekly for time time being as although his eyes haven't got worse, they still aren't normal.

On Wednesday both babies also had head scans. Joe's was fine, and Harry's showed he has a harmless cyst in his brain, possibly caused by a resolved bleed, but it's no cause for concern and unless they are still in hospital for another month, they won't need to be scanned again.

The babies weights mid-week were: Harry 5lbs 14.5oz and Joe 5lbs 4ozs.

Tuesday, 11 May 2010

Day 103

Just a quick update as I have had a long day at the hospital today and have only just got home.

Joe's operation yesterday went well. He took a bit longer than expected to wake up so he was moved down to intensive care on a ventilator . They had warned me that there was a small chance this would happen and he may need a day or so of being ventilated, but within a couple of hours he had been extubated and was transferred back to NICU. He was quite unsettled upon his return but I think this was more to do with the lack of food than any pain. Apart from a couple of doses of paracetamol, he hasn't needed any pain relief, and after sleeping away the afternoon he was back to normal by early evening. His wound is small and neat and won't even show once it is healed. Around lunch time today he arrived home to Poole.

I was hoping today that we would get a firm plan for discharge but it seems the doctors and nurses in Poole have other plans. All I hear is how I need to be patient, we can't rush, blah blah blah. I have been patient. I have been patient for 15 weeks! All I want now is to get my babies home. The plan as it stands is to see how the babies are next Tuesday. A whole week away. If Joe is still needing oxygen in a week they will arrange for it to be installed at home. Then we should be able to bring them home the following week. So that is two weeks. At least the end is in sight.

Harry says hello

video

Sunday, 9 May 2010

Southampton

On Friday little Joe was transferred to Southampton hospital as he developed a problem with his hernia. Instead of being able to push it back inside, it became stuck, causing him quite a bit of pain, so the doctors called the surgeons in Southampton and Joe was sent to PICU in the main hospital. By the time I arrived Joe had been given morphine and they managed to squeeze his hernia back in so an emergency operation to sort it out wasn't necessary but he has been added to the surgery list for tomorrow.

Because PICU isn't the best area for a premature baby we were then transferred again to the neo-natal unit across the road. They have a whole new way of doing things there. Several things are different but the main thing they say which is different is that now they are 38 weeks, the babies sats should be kept above 92% which means he is needing quite a bit more oxygen than before. Obviously this now means that I will be worrying Poole are keeping their sats too low as they consider anything above 86 to be acceptable.

So tomorrow is Joe's operation, hopefully, but if an emergency comes in, his will be delayed. Really it is best to get it done now as it will have needed doing eventually anyway and at least right now I don't have to worry about leaving Harry at home without me. Tonight I will be staying with Joe in Southampton so my next update will be when it is all over and we are back in Poole.

Thursday, 6 May 2010



Joe

video

Back to the nursery

Yesterday the boys moved back to the nursery. Harry is back up to his full amount of feeds, and Joe is almost there, just a few mls below where he should be.

Joe has been taking all his feeds from a bottle. He has really got the hang of it now. Harry needs a bit more persuasion and isn't quite such a natural, but is having at least every other feed by bottle.

Ben came to the hospital with me today and helped while I bathed the babies. Joe disgraced himself by pooing in his bath! but had lovely cuddles afterwards with Ben.

Both babies are looking fantastic. They have really turned a corner since the weekend and bringing them home is now being arranged. Not much can be done until next week when the nursery co-ordinator is back in work, but she will arrange for the oxgen equipment to be installed at home and a meeting will be planned which will include the nurses/health visitor/physio etc who will be keeping an eye on the babies when discharged.

Both babies were weighed yesterday and Joe is now 4lb 13oz, which is down 20 grams, and Harry put on 5 grams.

Sunday, 2 May 2010

Intensive Care x2

Joe is now in Intensive care with his brother. He had a couple of nasty desats/bradys requiring bagging so the doctors have put him back on cpap to give him a bit of a rest. He is still nil by mouth and is absolutely ravenous. Poor little chap tries to suck on anything that gets near his mouth. Can't think where he gets his appetite from....!

Harry came off his cpap yesterday evening and has remained stable today. He has had some fleeting desats and one bradycardia episode but on the whole seems okay. They have restarted him on some milk, tiny amounts compared to what he is used to but it will gradually be increased if he tolerates it well. I'm hoping that he will be moved back to the nursery tomorrow, I really have no confidence that the nurses in the room he is in now will spot when he needs help. Monitors flash red and beep constantly in there and no-one seems to take much notice of them.

Both babies are still on IV antibiotics until they get the results of their blood tests tomorrow.

Harry was weighed today and is 5lbs 4oz. He is looking wonderful since he had some blood, like a different baby. He has gone from ghostly white to lovely and pink and his puffiness has really reduced. Yesterday his neck and legs were really fluidy but today they are much better. Joe wasn't weighed today as we didn't want to disturb him but his puffiness is also lots, lots better.

Things got a bit complicated on the new pushchair situation. If you remember I returned my Bugaboo Cameleon that I desperately wanted because I was being hormonal, so I decided to replace it with a Bugaboo Bee. The Bee arrived and was totally not suitable, it didn't lay flat enough, and it was a real pain to fold and open in the rear-facing position. so we took it back. Now I have ordered a Phil and Teds Vibe, with Peanut carrycot and doubles seat. I'm thinking this ticks all my boxes - it has a carrycot so lays flat, nice sized basket, and I can used it for two babies when they are bigger. When it arrives I think we will be covered on the pushchair front as it will be joining a Mountain Buggy Twin, a Jane Powertwin, and a Roadster Duo. However, I am currently coveting the Icandy Peach Blossom, so watch this space... ;)

Saturday, 1 May 2010

Good news and bad

Harry, back on the dreaded cpap




Joe, after his bath last week


Harry, Mr. Crazy-Hair himself



I can't believe it's been nearly a week since I last updated. I kept putting it off as there wasn't really much change, then yesterday they had a great day but I was too tired when I got home.



On Wednesday the babies had their routine eye tests to test for Retinopathy of Prematurity (ROP). Unfortunately, it seems that both babies have the beginnings of stage 1. They are going to keep an eye on it, and they will be re-tested on Wednesday, but for now no treatment is needed.


Joe had a heart ultrasound as he has had a persistant heart murmour which showed he has Pulmonary Stenosis, which is basically a narrowing in the blood vessel that goes from the heart to the lungs. At the moment it doesn't seem too bad but he is to be reviewed in 6 weeks time by the cardiologist from Southampton.


For a few days it was a bit hit and miss whether either of the babies managed a bottle. For a day or two I almost gave up trying but yesterday they really seemed to turn a corner and both took three bottles for me during the day, and Harry managed one with his nurse overnight. For the first time yesterday both babies also managed the whole day without needing stimulation or facial oxygen to help them recover from desaturating. They both still desatted a bit, but came up themselves each time. The nurse even spoke to me about bringing them home, and said that it would be possible for them to come home while they are behaving like that as long as I am confident that I can cope with the oxygen requirements and tube feeding them.


Then today everything changed. Harry had an episode where his sats dropped to 8 and he needed a lot of stimulation and facial oxygen to bring him back up so as a precaution the doctor came and took him to another room to take bloods and put a cannula in him in case he needed blood. While she was doing that, he stopped breathing and she had to pull the emergency cord which sets off an alarm through the whole unit and all available staff run to assist. Very scary but they got him breathing again but made the decision to move him back to intensive care and put him back on cpap to give him a rest as his blood gas wasn't good and he wasn't managing to get rid of his carbon dioxide very well. His feeds were stopped so that he doesn't have a full tummy pushing on his lungs, antibiotics were started, and this evening he had a blood transfusion. Hopefully the blood tests won't show an infection and he can be moved back to Special Care with his brother soon. His colour is miles better already.



No sooner had we got Harry settled in Intensive Care, than Joe stopped breathing too. The first time his sats dropped down to the 20s, and the second time down to 2 with a heart rate of 20. It was an absolute nightmare and he needed quite a lot of intervention and bagging to get him back to normal. So his feeds were stopped, blood taken, cannula in, antibiotics started and tonight he is having a blood transfusion.





I'm really hoping that the blood does the trick and they stop all this desatting business because there is no way I am bringing them home until they stop doing it. After yesterdays good day I was sure I could cope and all would be okay, but today just proves how quickly things can change. My boys are still very fragile and I want to be their mummy, not their nurse, and if that means a few extra weeks in hospital until they are completely stable, then so be it.