Tuesday, 30 March 2010

weights

I forgot to updatethe last post with the babies new weights.

Joe is now 2lbs 6oz and Harry is 2lbs 13oz. Joe's head cirumferance has increased from 19.7cm at 8 days old, to 27.7cm yesterday.

8.5 weeks


Joe


Joe again












The babies are now 8.5 weeks and progress is slow so not much to update. Harry is still having time off his cpap and is coping well and Joe should be starting to have time off by the end of the week. Nothing dramatic has happened, no infections, no brain bleeds, eye exams normal and for that we are incredibly grateful. I keep being reminded that this doesn't guarantee 'normal' babies but I am happy and confident that all will be okay.



Both babies have folders in the drawers next to their incubators which contain all the doctors notes and reports. On the front is a big notice which states that the file is intended for drs and nurses use only and parents are NOT to look in it. Well this seemed like an invitation to me so on Sunday I waited until the nurse was out of sight and took it out of the drawer to look. I was happily rooting through it when that pesky nurse pounced on me. She almost wrestled me to the floor to get that folder off me and told me I was NOT to look in it. Hmmm. So yesterday I doubled my efforts, waited until teh nurse was busy over the other side of the room and covertly flicked through to see what was so top-secret. Alas nothing of great interest was in there, but I did notice that each day the nurse comments in her 'round-up' about me, and whether I have changed nappies etc. There is also a chart that is filled in each day which notes which parents have vistited, who else has visited, and how many times we have rang in. It was interesting to see that one of the notes in Joe's chart was that grandad has visited. Unless grandads Tibbles or Evans have snuck in undercover I can only assume that the nurse mistook David's brother for grandad, sorry Stevie.


Being sent back to Poole is now being mentioned more and more often. I am not keen at all. We are all so settled in Portsmouth and know all the routines and nurses. The drs have said they won't send us back unless they are 100% sure it is safe and the soonest this will happen is when the babies are both cycling 4 hours on cpap and 4 hours off. We are so close to that now and can see it happening within 2-3 weeks. Apparently my local health authority have to pay Portsmouth to look after us and once the babies are stable they can't justify keeping us there. I'm hoping if I keep my head down and don't mention 'home' then they will forget we are there :)

Saturday, 27 March 2010

Dungarees and dimples

Harry has a cute little dimple in his chin. I've never seen it before as he always has his feeding tube taped to it.



Joe (top) and Harry wearing matching blue stripey dungarees.


Friday, 26 March 2010

Off cpap


Harry, with no mask or hat. Let's hope he grows into those ears!

8 weeks old

Harry, dressed for the first time

Little Joe


Joe and Harry have reached eight weeks old, and tomorrow will be the equivalent of 32 weeks gestation.

Both babies are doing fantastically well. Harry is now spending one hour in every eight completely off his cpap, with only oxygen prongs to help him breathe. This is a huge step and once he manages 24 hours off in one go he will no longer be an Intensive Care baby and will be moved down to Special Care, where he will learn to feed.

Joe is doing well on cpap, but isn't yet quite ready to spend time off. His oxygen requirements are low, nearly always below 30% and he continues to amaze the doctors with his progress. It was only a week ago that he was still ventilated so he has come a long way. He has developed a hernia near his right testicle and the surgeon has seen him and will be keeping an eye on it. Hernias are very common in premature babies and it's only a very minor surgery to fix it, most babies are back to normal within a day or two of having it repaired.
When the babies were weighed on Wednesday, Joe was 975 grams, or 2lb 4oz and Harry is 1215 grams, or 2lbs 10oz.
Sadly I have to report that the twin next to Joe died in the early hours of Wednesday morning. She fought a hard battle for five long weeks but in the end her little lungs just weren't strong enough to cope.




Tuesday, 23 March 2010

fat baby Harry

Harry has so much fluid retention he looks like a little sumo wrestler. Finally the drs and nurses are agreeing with me that he isn't just growing fatter and this isn't normal. I hate to say 'I told you so', but....He has gained 6.5 ounces since Wednesday and is now 1156 grams which is just under 2lbs 9oz. He must be so uncomfortable, even his little toes are swollen. He had a blood transfusion yesterday evening but is otherwise doing well and we are approaching the time where is going to spend time off his cpap, breathing all on his own.

Here is Joe, when he first went onto cpap on Thursday evening. He initially did very well but struggled more and more each day and on Sunday we were anticipating him needing to be put back on the ventilator. The drs were keen to avoid this so tried him first on a different type of cpap called 'Bubble Cpap'. It does the same job as the normal cpap but provides greater pressures into his lungs which seems to agree with him as he has dropped from 70% oxygen down to around 30%.



Monday, 22 March 2010

Quick update 22 March

Just a quick update on how things are going. Sarah's staying at the hospital for a few days as there is a room available. Both boys have really blossomed in the past few days and are now both coping well and are both off their ventilators and on c-pap. I've not been in to see them recently as I fell victim to a sickness bug last week which has now moved on to Jack.

I think Sarah is back later today or tomorrow so hopefully she will update things in more detail soon and have some pictures of Joe off his ventilator.

Finally, Sarah has told me that one of the twins who came in to the unit just after our boys has been really struggling over the past few days and her parents have been warned about her prospects so we all really hope that she pulls through....it's a strange environment in the unit with everyone going through the same emotions so it affects all the parents when things aren't going well with one of the little ones....please keep your fingers crossed for their little girl.

Thursday, 18 March 2010

2lb baby x 2

Harry















Joe






After starting off at barely over a pound, both babies have topped the 2lb mark. Joe is 916 grams which is exactly 2lbs and Harry is 970 grams which is 2lbs 1.5oz. Porky little men!




Joe is doing much better. He is back on insulin as the steroids have increased his blood sugar levels and he is having a blood transfusion today to make sure he is in tip-top condition for when they next try him off the ventilator - that could be as soon as today if his blood gases show he is coping well.




Harry is doing well, but has been started on two anti-biotics as his blood is showing a possible infection brewing. He isn't acting like he has anything wrong with him, it's just a precaution to treat him before anything takes hold properly.

Wednesday, 17 March 2010

Pics




Harry. First cuddle, and afterwards.


Catching up

I haven't blogged for a couple of days so this is a bit of a catch-up with what's been happening.

After the Drs round on Monday morning Joe was considered ready to come off his ventilator and onto cpap. Yay! During the day another baby came in, so despite me hanging around and being on tenterhooks all day waiting for the big moment, it didn't happen in the end until after I had left in the evening. Unfortunately he really struggled and only last for seven hours before needing his vent tube replaced again.

Yesterday his ventilator settings were quite high while he recovered and he had quite a few apneas and bradycardias, where he stopped breathing and his heart rate slowed. The doctors decided he needed a new tube placed, so they tried him again on cpap as the tube was being removed anyway and they hoped he'd tolerate it better second time round. He didn't cope well but due to the frequent tube changes and long duration of being ventilated so far, his windpipe has swollen so they had to put a smaller tube down. The drs explained that this doesn't ventilate him as well as a bigger tube, so he is now on steroids again to hopefully reduce the swelling and either try him again on cpap, or more likely enable them to place a larger sized tube.

Today he had a few episodes of desaturating and not breathing but his nurse has been watching him carefully. He has been on minimal handling so he has been allowed to rest as much as possible. In the two hours since I left he hasn't had any more episodes which is reassuring so fingers crossed he'll be getting better soon.

Harry is still on his cpap, so its three days and counting! He is being such a star, and seems to be coping really well. He is now laying on a gel pillow to help his head shape, as both babies now have classic premature baby head shapes. Where they spend a lot of time either on their sides of laying on their tummy they are looking quite flat-headed so the gel pillow helps to support them. Joe can't have a pillow yet until he is off his ventilator.

Today Harry had his first eye exam to check for ROP (Retinopathy Of Prematurity). This is a disease that ocurs in some premature babies caused by the growth of abnormal blood vessels which can lead to blindness if left untreated. I've been quite worried about this test as I knew it was looming and have heard how awful and traumatic it is for the baby to go through. I was present while he had it done and I have to say it was nowhere near as bad as I was expecting. The dr used numbing drops and tiny little clamps to hold his eyes open and it was all over in the blink of an eye (ha ha!) Harry's eyes show nothing yet to be concerned about, but he will be rechecked every week or two weeks until he is discharged. Joe was too unstable today to have his eyes looked at.

Yesterday I had my first proper cuddle with Harry. A pic is coming up, as soon as I have downloaded it. He tolerated it really well after a bit of a shaky start.

Harry's morphine has now been stopped completely, as were his diuretics. I think he is starting to look a bit puffy again but the drs insist he is just growing and looking fatter. I'm his mum and I know him, so we shall see in a day or two if I am right. (Which I will be.)

The babies had another visitor today. Uncle Stevie came to see them and agrees they are tiny, perfect little people. It was lovely to see you, thank you for coming.

I have an adorable video of Harry hiccupping which I want to put on here but I can't remember how to get it off my phone. He is so cute and so LOUD that everyone could hear him. I'll keep working on how to do it.

Sunday, 14 March 2010




Harry is back off his ventilator and coping better with the change today. He'd managed seven hours by the time I left and his blood gases were excellent. He wasn't impressed though, and was very irritable, thrashing around and crying and generally acting very cross. He managed to lift and turn his head completely over at one point which is no mean feat when you weigh less than two pounds and have something large and plastic attached to your nostrils.
The nurse recommended he try a dummy to help settle him, as seen in the picture above. This is a dummy especially for tiny babies so you can imagine how small Harry's head still is. There are lots of benefits to premature babies having a dummy apparently.

Friday, 12 March 2010

A little update

Joe



Harry
A quick update because I am shattered. Both babies are doing well. Joe's ventilator settings are getting lower and lower, and he is now on caffiene preparing him for coming off his ventilator. His morphine is also being reduced so his breathing isn't being suppressed. His sats have been swinging a lot again today but he seems well otherwise, other than needing a bit of insulin as his blood sugars are slightly high.
Harry had a blood transfusion this morning but is otherwise stable. No other news on him, they are just resting him until his next attempt at coming off the ventilator.

Thursday, 11 March 2010

6 weeks old

Joe, just relaxing


Harry, back on his ventilator




Harry - a cpap baby, briefly


The babies are 6 weeks old today. I sometimes wonder what I did with my days before they arrived because it feels like I have been visiting them for months already. The last few days I've really started getting fed up of the drive down to Portsmouth and back every day. I'm just so tired of it and for the last two days I've fallen asleep sat next to Harry's incubator. If you could hear the noise in that place you'd know how tired a person has to be to be able to manage that. I may think about staying in a room on the unit again for a couple of nights. We'll see.

I haven't updated properly for a few days so will go back to the beginning of the week. On Monday Harry had a heart scan to check his PDA (patent ductus arteriosus). This is a vessel in the heart which normally closes soon after birth in full-term babies but this sometimes doesn't happen in premature babies. Harry's duct has increased from small to moderate in size so a consultant cardiologist was called in from Southampton hospital to assess him for possible surgery. He came today and has said that he would prefer to monitor it for now. We are so relieved, no-one wants their baby to have an operation, but it would also have meant being transferred to another hospital, away from Joe with no guarantee he would have a bed to come back to in Portsmouth. Having them in seperate hospitals would be my worst nightmare so fingers crossed it won't happen now.

The other big news today is that Harry was taken off his ventilator and moved to cpap. I have looked forward to it for so long and was so excited. The nurses warned me that Harry may not tolerate it and might have to be reintubated and they were right. He really struggled and only lasted 40 minutes before being put back on the ventilator. They said he's just not ready yet and they'll try again in a few days. I am a bit disappointed but you can't rush these things. I'd rather they wait til he is completely ready, than tire him out and make him poorly.
Joe is plodding along. His sats were swinging around a lot today and he didn't seem quite himself but hopefully he'll be okay overnight.






Tuesday, 9 March 2010

Hmm

Harry

Joe, dressed for the first time


Joe


I just did a long post about Harry and his PDA and have lost it somewhere. I'll type it out again tomorrow.







First cuddle

Joe snuggling into his mummy.
A poor quality pic as it was taken with the unit's camera as I didn't take mine.

Pics, courtesy of Aunty Liz











A day of mixed emotions

Yesterday was a day of highs and lows. I went in to discover that baby Riley, in the incubator opposite Harry who was born two days before the twins, had died that morning. I'll never forget the grief and pain on his mum's face, and his dad sat sobbing in the corner. I hugged his mum and told her how sorry I am, but what else could I say? Nothing would take her pain away and nothing I could say would make her feel better. I felt so guilty leaving her and going to see my two babies. The whole atmosphere in the unit was different yesterday and there were more tears from everyone as each parent came in and asked where Riley was and the nurse had to explain, again. Riley hadn't been ill and no-one was expecting it so it really brings home just how fragile these little ones still are.

Both Harry and Joe continue to be stable, and both have had their ventilator settings tweaked down. Joe's oxygen levels were around 60% but his rate of breaths per minute was reduced to 40. Harry's settings are almost as low as they can go, they are just reducing the pressures now. His morphine has been reduced so his respiratory system isn't depressed - another step towards cpap.

Both babies were weighed and are almost exactly the same size - Harry: 836grams and Joe: 843grams. This is about 1lb 13oz. They also had exactly the same head circumferance of 23.6cm. Actually that sounds very small so I will check that, I think I may have misheard.

The babies' great aunty Liz came to visit yesterday and they were on their best behaviour. She took some pictures so I will add them to the blog tonight. It was lovely to see you Liz, thank you for coming.

After the horrible start, the day ended on a real high. Joe came out for a proper cuddle!!! The nurses got him all ready while I put on a hospital gown, then they popped him against my chest, adjusted his tubes and left us for a whole hour. It was so wonderful, and he seemed sooo tiny out of his little greenhouse. It was so relaxing I could have fallen asleep and Joe coped with it all really well and slept through the whole thing. He was a bit twitchy each time there was a noise, but I suppose that's because everything must seem so much louder to him in the real world.

Off to the hospital again soon so another update and pics tonight.

Sunday, 7 March 2010

Millie and Harry
Harry



Looking better

I am sat here at 2.30am attached to the breast pump (I am SICK of the sight of this thing) so will just let you know that Joe was looking so much better yesterday. He had a blood transfusion and a bit of the red stuff is obviously what he needed because he looked back to normal. His colour was better, in fact he looked like a little tomato, and he was moving around again. Phew! I was so worried about how awful he looked the previous day.

Little Harry is doing fabulously. He is on caffiene again to help his lungs in preparation for being extubated. Still no word on when this will happen but it's close!

The other little twins on the unit aren't doing so well right now so I am counting my blessings that my boys are doing okay.

Joe

video

Joe - hopefully this has worked

Friday, 5 March 2010

Harry 05/03/10

Harry

5 weeks 1 day


Just a quick update and a pic of Joe from this morning's visit.
Poor Joe is looking very unwell. His colour is poor, he isn't saturating well despite being on over 90% oxygen, and he is very quiet and unresponsive. He will usually wave his arms and legs about and generally make a bit of fuss if he is handled but today there was nothing, no reaction from him at all.
His left lung has partially collapsed so he is positioned on his right side to help him breathe a little easier, and he is on diuretics to reduce any fluid around his heart and lungs to make breathing less of a struggle.
Just as I was leaving for 'quiet time' (they have three quiet times a day where all parents have to leave) he opened his eyes and looked at me, so I know he's still there, fighting. I hope he manages to turn a corner soon, he doesn't deserve to be suffering so much.
In complete contrast Harry is doing really well. He is active and his colour is great and the doctors are talking about trying to wean him off the ventilator and onto cpap. This is such wonderful news and such a huge step. I doubt it will be in the next day or two, but hopefully it's not far away. Once babies are onto cpap they can come out for proper cuddles, I can't wait! Sometimes I feel so guilty that they are missing out on normal babyhood but being able to hold them will go some way towards letting them know how loved and wanted they are, no matter what.
I sometimes wonder why I have been lucky enough to get two such perfect, tiny people, but I thank God for giving them to me.
A pic of Harry is coming up.

Another day go by

I popped over to see the boys on Thursday and spent a couple of hours down there with them. It was the first time I'd been there on my own with them and it was strange not to see Sarah sitting next to them but she's having a few days off to recover from the non-stop cycle of expressing and travelling ...I just want to put on the record what a wonderful job she has done and how much we all love and care for her...she truly deserves a break.

When I arrived Joe had just been put back onto the high frequency ventilator which helped to get his blood gases better (he's subsequently came off that overnight) and he's settled again...the Doc again confirmed that the only thing they can do is to keep him settled and wait for him to grow so that more options become available such as steroids again. It is really worrying that he seems to be struggling so much...but he's clearly growing and we just pray that he can come through this.

Little Harry is doing well and he had a new bigger ventilation tube put in yesterday and his supplements in his milk are slowly being increased... so he's doing his best...bless him.

Thanks again to everyone who has posted messages and telephoned us with their kind words, we're just sorry that we don't always manage to get back to you...particularly mum who's been ill recently - so this is just for you, mother...get well soon !

Wednesday, 3 March 2010

Day 33

Joe's ventilation continues to be increased, and his oxygen is still hovering between 70% and 80%. The doctors are questioning whether he has some underlying infection causing him to require so much support, but he isn't acting like a sick baby, he's alert, feeding well and active but he was looking a little puffy around his face and arms when I left yesterday. He had yet another new ventilation tube as the one he had was possibly a little short but it hadn't made much difference by the time I left. He is producing lots of secretions from his lungs and in his mouth so is needing lots of suction which is a bit unpleasant for him but it's important to try and keep the tube as clear as possible.

They have said not to worry too much (hmm, if only it were that easy!!) and that there are other things they will try if they need to. They have said they may try the High Frequency ventilator again, diuretics to reduce any fluid around his lungs or steroids. They have also said they may sedate him and let the ventilator do all his breathing as he may be fighting against it and not letting it work properly. We'll know of any changes after the doctors' round this morning.

Harry is stable. His sats swing up and down but that is normal for him.

Monday, 1 March 2010

Germy children.

I just want to have a small rant about something that is annoying me a lot. The baby in the incubator next to Harry's has two siblings aged one and three-ish. The parents probably visit three times a week on average and always bring at least one child with them. Today they brought in both of them. The first thing that annoyed me was they wheeled the youngest one in in a grimey, smelly, dirty pushchair that stank of cigarettes. And parked it next to my baby's bed! I'm not obsessive about dirt and germs usually but I don't want anything like that near Joe or Harry. I was so cross that the unit are so strict about not wearing outdoor clothing in, and hand washing etc, but they were allowed to wheel in a dirty old pushchair with gay abandon.

THEN, the baby in the pushchair woke up. The second she woke she let out a raspy cough INCHES AWAY FROM HARRY! I couldn't believe it. I thought any second a nurse would hear and send them out. I closed up the doors on the incubator and moved over to Joe and the poor baby was still coughing. It was that horrible ill-sounding, chesty cough that only comes from a sick child. WHY would they take a child like that into the unit? Okay, I lied about not being obsessive about germs, one of my pet-hates is germy, snotty, coughy children being paraded about spreading their illnesses but today just took the biscuit. I'm getting cross just thinking about it - cross with them for being so stupid, and me for not being assertive enough to say something to the nurses. I pray to God that my little one doesn't get poorly because of this...

A month old

Yesterday Joe and Harry were a month old. Time has certainly flown by. I wish I could list all the advances they have made but to be honest it seems like we have come to a bit of a stand-still.

Today both babies ventilation was increased, Harry's rate was turned up from 35bpm to 50bpm, and Joe's oxygen was between 70 and 80%. I keep telling myself to concentrate on all the positives - they are growing, no infections, no brain bleeds, no heart problems etc, but I just want to speed up time and have them off the ventilators, feeding, and home. I want to be able to see a year into the future and know they are still with us. I want to see 5 years into the future and know they are okay.

Last night was weigh-in night and Harry is now 800 grams, and Joe is 786 grams.