Newbie had my baby at 26+2 what a roller coaster of emotions

[takingforever]

Just a lil update
Well L'Angley has been put back into intensive care Hes working too hard with his breathing around 120bpm 85%02 he was an inch away from being reintubated poor lil thing but they have had a word with a respiritory specialist off the childrens ward and have decided to start him back on dex for just a little over a month starting off at 0.4ml then going down to 0.2ml then 0.1ml every other day to see if that improves things they have stopped feeds yet again as he needs to have a camera down his throat to make sure his milk is going where it should be and not into his lungs as he cant tolerate 2hr feeds and they recon at 33 weeks gestation he should be on 2-3 hourly :S
They did an ecg and a echo and his heart is fine and pumping enough blood to his lungs but his crp is slightly raised to 11 but he has this pea sized lump on his arm where he had a canula or an attempted canula its all red and looks really sore so they think crp might be raised cause of that but hes on antibiotics anyway so they arnt really concerned.
Just rang to check on him and 02 has come down to 60%ish and is more settled but still unstable and they promised to ring if anything changes god im never going to sleep tonight now xx
So glad Aaryan is doing so good he will be home before you know it even if it is on 02 fingers crossed he keeps up his good work xx

 

[25weeker]

I am really pleased to hear Aaryan is doing well cycling of the cpap and is only needing tiny amounts of oxygen. You could try fenugreek to increase your supply. You can get it in holland and Barrett. You could also increase the number of times you express for 2 days. When I needed to increase my supply I expressed 10 times but still only once through the night. To fit them all in I expressed 4 times over 4 hours! Although I didn't have any other children so could spend my time doing it and this probably isn't as easy for you.

Takingforever - I hope your lo stabilises and doesn't have any infection. Take care xx

 

[Agiboma]

Takingforever I hope your LO gets better soon he will be ok just hang in their mamma

 

[mumof2kids]

Taking forever, I'm sorry to hear that L'Angley is back in NICU, he may just need more dexamethasone, I'm glad to hear he is not reintubated. It is really hard watching your baby go from cpap to vent I was so unhappy when it happened with Aaryan. Also I want to say your baby is 33weeks so he has alot of growing still to do... it maybe just his age and with time he will improve. Aaryan was on hourly feeds till 40 weeks only then he moved to 2 hours. Also inflammation can cause the CRP to increase I hope there is no infection. I hope to hear some good news from u today just keep positive, premature babies are defo fighters sending lots of

25 weeker, I will definitely try more expressing, my mum has taken my daughter on holiday for half term holiday so I have more time on my hands to be with Aaryan and increase my supply. Fenugreek sounds like a good idea. Thanks

Aaryan is doing ok yday had 4 hours off which he tolerated. He so needs a hair cut as his hair keeps pulling on the cpap hat and he . The consultants want to move him to my local hospital apparently he doesn't need intensive care now. But I'm not too happy with it as my local hospital is actually further than this one. Also I want him off cpap before he transfers as they said he can be in special care at my local but they don't take babies on cpap in special care it doesn't make sense.

 

[takingforever]

Well i agree with you there mumof2kids our preemies are defo fighters i walked into nicu this morning and it was like looking at a different baby he looked so much better and is no longer on bipap he is just on normal cpap oxygen down to 34% feeds have been restarted diaretics have kicked in he no longer looks puffy he was weighed and has lost 1oz i was amazed at the difference im just looking forward to tomorrow now as i can have cuddles now he has stabilized woo hoo
I feel like im on a rollercoaster my emotions are all over the place but for now im a happy bunny
OMG the cpap hats are rediculas way too tight my lo has quite a bit of hair too and it snags at his and his is pink lol only one that will fit him xxx

 

[mumof2kids]

I'm so happy for u!!! Welldone L'Angley!!! He has done brilliantly. He just needed that one day to recover and here he is, you must be so pleased. Sending positive energy that you can have cuddles soon.

Aaryan ok but not so settled crying alot again which I'm concerned about and his o2 requirements have gone up to 27% Doctors gonna give him a try with more time off so lets see. He has 0.03 o2 on nasal canula. I'm going twice a day to be with him when he on nasal canula... they found MRSA in his sputum so I'm very very worried, they said its nothing serious as at the moment its not in the blood but still as a parent it's scary. I don't want anymore reason for him to go backwards.

 

[takingforever]

Bloody hell there is MRSA going round our nicu too pisses me off that they swab for it when they think your either not looking or when they think your not about we caught the nurse doing it last time and asked her why she said a baby in the nicu had it (not in so many words as she can get into trouble) I asked her if the baby had been moved and it hadn't as there wasnt enough staff to take the baby to isolation i was so mad but touch wood L'Angley has had 3 clear swabs which means hes not caught it *thanks god*
So are they going to treat it mumof2kids or leave it till it gets to the blood ?

 

[mumof2kids]

In this hospital theY swab all babies twice a week its normal practice for them to do that as they like to know what bugs the babies are carrying and íf the babies suddenly get unwell they are ready with anti-biotics. He has had it in one swab and they will repeat it again today. They also barrier nurse him so gloves and apron so the next baby won't get it. His one is via contact, thus someone has passed it on to him, apparently a third of us carry the MRSA on our skin, so its skin to skin contact. She said if its in the blood then its serious. If this swab shows up again then they will use a scrub on him and put some meds up his nose that's really it.

Aaryan is behaving fine though thank god! Still cycling, nurses said it will take many weeks to totally get him off cpap but fingers crossed it will happen. Doctors are not too concerned so just going with the flow.

How is your lil one doing?

 

[takingforever]

L'Angley is doing good now the steroids have kicked in oxygen is around 30% they are going to try 2 hour feeds today and slowly wean his preassure down ready for cycling but i feel its too soon but we shall see what happens as of today his steroids have gone to once a day for the next 4 days then every other day till 27th Nov. His antibiotics have been stopped as all his cultures have come back clear his crp is dropping and all the secretions are clear also should get a date today for his xrays to see where his milk is going hopefully it all stays in his belly and its just wind that makes him dip so fingers crossed.
Im so glad Aaryan is doing good and fingers crossed this MRSA will just dissapear and at this rate you will have him for xmas yay go Aaryan !!! xxxx

 

[mumof2kids]

Hi it's been a long time and I'm a very upset mummy, my lil one was doing well with cycling and increasing his feeds to 3 hourly on monday he was supposed to have 8 hours off and 4 on, and he got transferred to level 2 hospital my supposed "local hospital" its absolutely horrible I hate it, they are keeping us in this one room like a isolation room which because of his infection he is something called CMV which he had for weeks and weeks in the old hospital but there was no need for treatment as he was not showing any clinical signs all that happened that he was barrier nursed, with regards to MRSA he has already 2 clear swabs so they think it's cross contamination. Anyways this place is so relaxed and they don't have enough staff, they stopped our cycling as he has desats which he had at our London hospital, I'm just fed up with it all he is back on constant cpap. All I do is cry when I'm there and when I'm home. I can't believe I didn't get a chance to keep him at Royal London I'm so unhappy and there is nothing I can do. Just to add to the stress I was told he has hernia's and we need to operate when he gets a lil older. I don't know what to do just feel so alone and he feels so out of his comfort zone needing more o2 now!

 

[Anna_due Dec]

It's just set back after set back with your little man. I really feel for you. Just try to focus on the positives, I know it's hard. Don't forget this does have an ending and it is a happy one. hope he starts taking some big steps forward soon xoxo

 

[Agiboma]

sorry to hear about your fustration. i know that the "LOCAL hospitals" are often way more relaxed than the intensive care but dont worry about it he will be home with you where he belongs soon enough, hang in there mamma

 

[takingforever]

Aww hun im so sorry sounds like your going through the same as me we found out 2 days ago that L'Angley has a hernia due to straining for a pooh but for the past week ive asked the nurses to give him some glcyerine (sp?) to help him but no they wait till he popped a henia in his scrotum which will need surgey before he can come home which is weeks off yet but the thought of surgery petrifies me So now he will get regular help.
His oxygen has started creeping back up to anywhere between 40-50 % but they dont seem too concerned about that even though hes still on the steroids..Yesterday he had an upper body GI study to see if his milk was going into his lungs but its not but it did uncover another problem he has his stomach isnt contracting properly and i havent a clue what that means have to wait till today to see if the report has come back and go from there.
It always seems to be one thing after another Big hugs to you and keep your chin up xxx

 

[mumof2kids]

I don't know what to say anymore I'm just exhausted with the whole thing. I just want my baby home and it's not happening. They atleast started cycling 3 hours off, was 8 hours on monday at my other hospital. Feeds are going ok. Gaining weight, they keep telling me he is a stable baby, my only worry is increased o2 when I went in today he was off c-pap and was on 1.13o2 I was horrified he has never needed such amounts before ever, I just quickly picked him and gave him his dummy and the nurse decided to bring it down to 0.05. The consultant seems very good having worked himself at the Royal London but the nurses and staffing issues are just terrible. I don't know how long this is going to go on for. They keep repeating to me that they are a very poor trust and even told me to go back to Royal London and ask them for certain things they run out of. I just find the whole thing ridiculous. They don't promote full breastfeeding, they want to feed by baby bottle, they don't have 24hours visiting for parents. Sorry for ranting but I just can't help it, one of the parents told me her daughter was fed someone else's bm!!!

Agiboma- I'm so happy to hear your news, how is lil Micha doing at home? What's his weight?

Takingforever- I know what u mean with o2 requirements our CLD babies are so dependant on o2, don't know when it will end. Hernia is just terrible, they told me I need to go back to the same hospital Aaryan was at to do the op I don't get why he was transferred then! I'm sorry to hear about his tummy, you are so right it's one thing after another. Fed up!!!!

 

[Agiboma]

Micah is now a little over 7 pounds, and on strict bm no more fortifiers YEAHHHH.
@momof2kids i know not having 24h access to your baby must drive you crazy @ the local hospital we where @ they closed the doors for shift change which is 1 hour and that drove me crazy. Aaryon is a fighter and he will be home soon with the family
@taking forever so sorry about the hernia i herd they are very common

 

[Anna_due Dec]

Not having 24 access in a nicu/ scbu is disgusting. Hopefully your time there passes super fast.

 

[mumof2kids]

Its even worse that they don't have different rooms for NICU/HDU/SCBU its all one long room so they start 9am and finish 12pm thats how long ward round is.

They pushing me to use bottle on him not to breastfeed, today they gave him a bottle he drank quite a bit. He is cycling again and they did a heart scan echo, and i was so happy to know his PDA has closed and heart is fine so thats one less surgery.

Still on o2 so I guess more than likely he will go home on it but anything is better than going there.

 

[Agiboma]

glad to hear things are better now, one day he wont need the o2 anymore premies are like that, i cant wait for him to go home where he belongs

 

[mumof2kids]

Thanks Agiboma, I do hope he can get off the o2 one day with his CLD is more likely to be on it, he still has desats. They tried feeding him a bit more bottle today but his heart rate went down so I guess he is not ready for that yet. Cycling still happening. Did his eye test which is clear no ROP so yes no more eye tests!!!

How much o2 did yr lil Micha start on and how long did it take to wean?

 

[Anna_due Dec]

yay!! no more eye tests!! One less thing for the little man to worry about.