Introducing Amelia Grace (now I promise to stop hi-jacking Marleysgirl's thread!!

[Marleysgirl]

Hiya Sherry, apologies for not posting sooner - laptop problems - but Millie is a wee cracker!

 

[DiddyDons]

aw shes lovely x

 

[nkbapbt]

She's beautiful! Congrats hon!!

 

[Sherileigh]

Your baby is beautiful!! Congrats...can't wait to hear more updates and see some more pics of her!

 

[Marleysgirl]

Any news, hun?

 

[sherryberry79]

Hi, not too much to report, had a tough week really. Millie was scheduled to have the PDA op on Thu but because she had some consolidation on her right lung they were unable to go ahead with it. During the op they collapse the left lung so the right has to be as good as it can be. Hopefully they will X-ray her again tomorrow and find it has improved, then we can cross her fingers the op goes ahead this week.

Her tummy has been big for weeks, they had been telling us that it was trapped air, and that the air was visible on X-rays. I was dubious from the start that her tummy could be THAT big purely due to trapped winD, but I trusted them, you have to really, but now they don't think it is just trapped air. On Friday she had a contrast study, and we have not had ANY form of feedback, they say that the Doctor needs to write a report, and he was not in over the weekend. I understand he has to write a report but I would have really appreciated a very brief verbal interpretation of the results. Just to know whether or not there looks to be anything wrong, but apparently that's not possible, so we are still in the dark.

Every Thu she has had her ROP check. We were told that Julie (who does them) would not speak to us unless there was a problem. Every Thu when we ask for the results they tell us that she has not written in Millie's notes, therefore everything must be okay. Then at 8pm Thu evening Julie calls us to tell us Millie is at stage 2, which came as something of a shock as we had never been told she was at stage 1!!

Just feel like the communication is not what it could be, and I resent having to chase info about Millie, but form now on I shall be making damn sure I do. The nurses are all wonderful, but Millie's consultant is not as forthcoming as he could be! Sorry to have such a moan, as I say, it's just a bad week. Nobody said this was gonna be easy! Hope you and your wee man are doing well x

 

[sherryberry79]

Here is a pic to give you an idea of what I mean about her big tummy. It's not the most flattering pic of her (I'm sure she would not thank me for posting it)!

https://i807.photobucket.com/albums/yy357/sherryberry1979/027.jpg

Poor little thing, it looks so uncomfortable, but it does not seem to bother her.

 

[dannigizmo]

Hey hun, you are not moaning at all and no wonder you must be round the bend with the lack of communication. We felt the same at times. Hopefully you will get some answers tomorrow though it is totally awful you have to wait!!


Emma had stage 3 ROP and was given laser surgery that was sucessful first time. If you have any questions about tummy issues just ask, am well versed in that department, but if it was anything like nec they would have known by now am sure as her infection markers would be up. And once she is stronger and got passed all this she can get her PDA closed, emma's wasnt closed for 2 months.

I know this is a terrible, unsure and scary time for you, and we are all here for you and your babe. If you need anything just ask. Thinking of you all xxx

 

[dannigizmo]

And no matter what she has got on her face, she is beautiful hun!!
Am just making a journal scrapbook for Emma's first birthday and all the pics, warts and all, going in, sure she will love me for it haha!!xxx

 

[grumpymoo]

she is absolutely gorgeous and so strong, and so are you!
bless you both for what you are going through at the moment x

 

[premmiemum123]

She is so gorgeous it brings tears to my eyes. She is so beautiful and a little fighter.
Emily's stomach was massive and it used freak me out when they weighed her and she was naked, yet nothing was wrong with it. She was just being force fed and her stomach was bloated.

I hope Millie's lung improves and they go ahead with the op...fingers crossed.

AS for the consultant, I think it is poor that they have not spoken to you. I would demand some time with him/her and go through her current condition. These hospitals vary in communication (which annoys me as it is inconsistent), when I was at St Peters in Surrey, I was able to talk to the doctors and consultant everyday as they let us stay in the room during ward rounds. If I ever missed them I would ask the nurses to request the doctors to visit me to discuss Emily's condidtion and they always did. However, when we were moved to East Surrey, it was so different, I felt I didn't know what was going on as the doctors were reluctant for you to stay in the nursery during ward rounds and then didn't bother to come and see you if you were waiting outside. In the end I used to always say to our nurse, please can the doctor talk to me after the ward round, even if it was just to say there is no change. You do have to be pushy as they are so busy and sometimes they forget these poor little mites have worried, fraught parents that want to know what is going on.
At the end of the day we are our babies voices, that is what I kept telling myself when I felt I was being a nuisance to staff.
I think sometimes you have to think, well if it was really serious then they would pull me into a side room to discuss it.
I don't think they tell you everything as there is so much you could worry about unneccesarily and it could be too overwhelming. Your well being is as paramount as your little ones, as you are her will, willing her to grow and get stronger.
Definitely push to speak to the consultant, it is your right as her mother.

Big hugs and thinking of you all always....x

 

[Marleysgirl]

Thanks for the update Sherry, and kisses to Millie - I hope she's well enough to go for her operation this week.

Andrew's tummy is a little swollen, but nowhere near as bad as Millie's - they keep saying it feels soft and is okay. However his scrotum is pretty swollen and we are having trouble getting anyone there to be concerned - nurses keep saying it might be a hernia and they report it, but nobody seems happy to commit or otherwise.

I'd agree that it's tricky to see the consultant to get an update, and we've started making a definitive request every other week to sit down with ours for a chat (we've got Dr Gottstein).

With regards to the ROP, I don't think they "go through" stage 1 before stage 2 - it's more a description of the level of scarring - hence why you wouldn't have had prior warning. And from what I can gather, it can just "appear" between checks, so it's not that it wasn't picked up before, more that it's probably just happened. Andrew was clear on his first check, but has showed stage 1 on his second & third checks.

Hugs to you all

 

[sherryberry79]

Thanks for all your replies girls. It's such a comfort to log-in and read all these wonderful messages of support. I went out on Saturday and got a bit tearful. Although my friends are great and try so hard to say the right thing, they've not been through it and have no idea just how hard this is. It's great to be able to talk to people on this forum who have been/are going through the same experience.

Millie has been pencilled in to have her op at Alderhey on Wednesday. They want her there at 10am with a view to operating in the afternoon. They have stressed that this is subject to there being a bed for her, and of course her being well enough, so keep everything crossed for her!

Still no news on the results of the contrast study. One of the doctors has looked on the system, but her X-rays had not been entered yet, he has promised to chase the X-ray dept tomorrow so hopefully we may get some answers. He said reading between the lines though, no news is probably good news.

Once again ladies you have been such a great support with your words of wisdom and comfort, I think you are all brilliant x

 

[sherryberry79]

Hi girls,

Amelia had her ligation operation at Alder Hey yesterday, the duct in her heart is now officially closed. The surgeon was brilliant, he said it is the largest duct he has ever seen on a baby of Millie's size! The operation was a success however, and apparently as soon as the duct was closed her circulation improved. Right now she is recovering from the op, she will remain on morphine until they have removed the drain, which they have said will be done this evening....in fact by now it may well be out. Her ventilation level is the same as it was before the op, but they are going to start weaning her very soon, we hope to see her off that ventilator in the next few weeks.

When the cardiologist performed a heart echo at Alder Hay he found an abnormality with Millie's heart. He said it's something he has never seen before and may well not be a problem at all, but if it should need attention he said it should be a very simple procedure, where they would insert a balloon. Trying not to think about it too much right now, as he seemed to think it would not give her any problems for the time being, but it will be monitored.

Yesterday was a very worrying day and by the time we arrived home from Liverpool we were both shattered and nursing stress headaches!

 

[Foogirl]

So glad it has gone ok. Here's to a speedy recovery and having her home soon.

 

[sherryberry79]

Thanks Foogirl, we hope she comes home soon too, there is a long way to go but she will get there. Ur LO looks like a cutie in ur pic!

 

[Foogirl]

Thanks, she does get cuter by the day!

 

[Marleysgirl]

I'm so glad that the operation went okay - here's hoping that Millie now starts making great progress!

Andrew waves at her - but from further away, he's in Room 2 now!

 

[dannigizmo]

Thats great the op went well hun. I think she will come on leaps and bounds now and wishing her home in your arms very very soon. xxx

 

[sherryberry79]

Great news that Andrew has been promoted again, he is doing brilliantly.

Millie's ventilation has gone right down, they were talking about trying her on Cpap, but unfortunately her CRP has shot up, they are concerned she may be brewing an infection so for the time being she will remain ventilated.

Another stressful day for me and my OH. We are both feeling pretty grotty so we only stayed at the hospital for ten mins today and could not open her incubator to even touch her for fear of passing something on.

When we got home from hospital my OH had a phonecall from his company to say they had miscalculated his vacation. He is Danish and works as a navigation officer on a Danish ship. He works two months away at sea and then he comes home for two months. We had been told he could be at home until December 1st, by which time we were hoping Millie would be home. Now he has to go out sailing on or around Nov 1st, and there is no chance of her being home before that. I have to admit, the thought of being at home with Millie on my own really scares me. I am a first time mum and I am worried I am going to feel overwhelmed with the level of care she may need, what if she comes home on oxygen? My mum is not far away, and I know she will be there for me, but it's not the same as bringing your baby home with your partner. So many times we have seen parents leaving the hospital with their little ones and have been looking forward to Troels and I walking out of St Mary's with Amelia all tucked up in her car seat. Obviously Troels is very upset too, he wanted to have a little time at home as a family before he had to go out sailing.

Ever get the feeling that life is really kicking you in the balls? I just think we could do with some good luck now, and this has come as a real blow, totally unexpected. We have no choice though, we need his wage. I am sure I will get into a routine with Millie quickly enough, and maybe it won't be as hard and scary as I think, but it's not what either of us envisaged. Sorry to have a moan girls