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

[Agiboma]

wow, i am sorry to hear about this i am also surprised they gave him 5 rounds usually they stop @ 3 rounds if the PDA does not close, i think resting the tummy is great and he is getting his nutrition by tpn i am sure so try not to worry i want you to know that surgery is frightening but i can see the effects of the surgery already. i.e less suctioning my LO was being suctioned every 30 min prior to surgery now its like every 4 hours, gl with the next few days, im sending positive energy to you and your family

 

[keldac]

I know from experience how dreadful NEC is. I pray your little fighter recovers very soon x

 

[nineena]

hugs hun and hope your LO is continuing to get better xxxx

 

[mumof2kids]

Thank you for all your replies. Yes it's been very stressful. Regarding indomethacin they said they wanted to give him 6 doses and then check the PDA however he only got 5 of them. They checked his PDA yda which is now 2mm it was 3mm so the meds have done something but i don't know if its enough. They said they may consider restarting the meds at a later date if the need be it's all on how he reacts and how much his PDA is affecting him.

His tummy thank God is ok it's a little big but he always had a larger tummy and plus with him being on the ventilator some air goes in the tummy area but its pink and soft so the surgeons are not worried and medically managing it. He has for now not had any more bloody stools. The Dr said yday that it could have been the indomethacin that caused a ulcer in his tummy which caused the bleeding as no markers or xray has shown NEC but it's always better so be safe and treat it. He has been on morphine so he can sleep as he was uncomfortable. He is not on TPN as he doesn't have a long line only the canulas and they preferred to use IV fluids so he has had no milk since monday morning. Now they will reassess the situation today if they want to rest the tummy further and put a long line in or they may restart feds within the next few days. It's all on how he behaves.

I'm happy the indomethacin did something right to his PDA and will only hope the bloody stools were due to the meds. It's so stressful.... many things I can handle but NEC is damn scary as you hear so many stories of how babies don't make it. I'm not too scared with the thought of PDA surgery I was more frightened that he would need surgery for the NEC.

I'm just keeping my fingers crossed and praying this time will pass soon. And he can start making a recovery.

Thank you again for your kind words.

 

[mumof2kids]

To Abigoma,

Yes suctioning is an issue with my lil one... every hour to 2hours gets it done now its creamy and white rather than thick yellow which it was before. He is also having physio everyday to push the secretions up so its easier to suction. They have not discussed PDA surgery as yet with me I'm guessing cos he has had infections in the past and now with the tummy and being on antibiotics I can't see that he is ready for surgery right now. But he is still havin desats however he is not going that low as before and it corrects much faster now, before he needed more o2 for improvement but now thats not the case only with cares he needs more o2 but we are back where we started on the vent cos they wanna rest him so he clears what ever infection if he has in his tummy.

They decided to keep him NBM now till Monday so going to start TPN tonight and put a long line in as TPN on the canulas carry their own risk. I'm not too happy with the long line as that's another reason for him to have infection so it's always a double edged sword with everything they do. But the other side says to me I rather him have no milk for another 5 days than restart it too early and have NEC and probs wait weeks or months before he gets any feeds.

So did they try some meds to close your baby's PDA? How's his breathing going now? Is the still on vent or have they moved him on to C-PAP?

My lil one is on CMV right now cos they want him to rest he was on PTV. But last night they increased the rate but decreased his o2 levels and he was quite happy on that mode.

 

[Agiboma]

To Abigoma,

Yes suctioning is an issue with my lil one... every hour to 2hours gets it done now its creamy and white rather than thick yellow which it was before. He is also having physio everyday to push the secretions up so its easier to suction. They have not discussed PDA surgery as yet with me I'm guessing cos he has had infections in the past and now with the tummy and being on antibiotics I can't see that he is ready for surgery right now. But he is still havin desats however he is not going that low as before and it corrects much faster now, before he needed more o2 for improvement but now thats not the case only with cares he needs more o2 but we are back where we started on the vent cos they wanna rest him so he clears what ever infection if he has in his tummy.

They decided to keep him NBM now till Monday so going to start TPN tonight and put a long line in as TPN on the canulas carry their own risk. I'm not too happy with the long line as that's another reason for him to have infection so it's always a double edged sword with everything they do. But the other side says to me I rather him have no milk for another 5 days than restart it too early and have NEC and probs wait weeks or months before he gets any feeds.

So did they try some meds to close your baby's PDA? How's his breathing going now? Is the still on vent or have they moved him on to C-PAP?

My lil one is on CMV right now cos they want him to rest he was on PTV. But last night they increased the rate but decreased his o2 levels and he was quite happy on that mode.

That is great that it's nbm it will help his tummy and the antibiotics is just a precaution so they are being proactive, but the indomiacin can cause NEC that is a side affect and also it is VERY HARD on teh tummy, if 5 rounds did not close it or closed it a little i dont know why they are trying another, its a hard decision to make but my LO was never given meds because his pda was small @ the time of discovery 1.2mm and he was on nbm also so they decided @ that time not to do the meds, fast forward a few weeeks later pda was 3.5mm and surgery was the only option i wanted for my son, I WAS VERY CLEAR WITH THEM i dont want the meds @ this time and they agreed that surgery was the best option.
As of today my LO is on cpac, i am going to the hospital now to see him hopefully get my first cuddle, since he was born i have never held him its been almost 6 weeks. i am always thinking of you and your LO, its hard but try to stay strong look @ me giving advice when i go crazy missing my LO everyday and night
please keep us updated their is nothing that has not been expereinced by forumn memebers and where all here to help each other

 

[kayshablake]

im going through this now severe iugr baby was born 31weeks 2 days weighing 1lb 10 oz still in hpital now 2 weeks later but doing really well please message me or add me on facebook kayshablake is my name on there would love to keep in touch with going through same stuff xxx

 

[kayshablake]

https://www.babyandbump.com/premature-babies/362499-please-give-me-hope-advice.html thts the post i made on here hopefully reading through it may give you some sort of insight xxx

 

[mumof2kids]

Hi, thats great news that your baby boy is on cpap! well done to him! and your first cuddle that is amazing!!! I'm really happy for you. I got my first hold when he was 5 weeks and as he was on the vent and he started gettin desats they have not let me hold him again but let me tell u it was amazing i was in love with him all over again! it's the best feeling ever! Let us know how it went.

Sounds like your lil boy's PDA increased my sons didn't increase it was effecting his heart before but not the lungs now the flow as reversed so it's starting to effect his oxygen around his body. Thus they decided on meds. They said if there is even some decrease in the gap of PDA they can give a total of 12 doses of indomethacin so to close the PDA. He only had 5 and it closed slightly, they said PDA open over 1.5mm is wide so his is 2mm. That's why they may give it again however the Dr also said that if it's not bothering him they may leave it and let it close itself which generally it does. So let's see I'm sure by Monday the Drs will discuss it with me, at the moment they seem to be dealing with his tummy. They started his TPN via canula rather than long line for now which is good. And he has been desatting less today they decreased his rate on vent and is on minimal oxygen so I'm hoping he carry's this on.

I totally understand how you're feeling.... when I leave the hospital I always shed a tear... I just find it so hard leaving him there night after night. I know one day he will come home but at the moment it just feels like we started the journey and end is far far away. I got a little girl at home she does keep me busy and also sane without her I think i would have broken down. Lots of love to u and your family and most of all to your son for dealing with the surgery so well and moving to CPAP. x

 

[25weeker]

Glad to hear your lo is improving. My LOs tummy was swollen quite a few times and they stopped feeds, took X-rays and got it checked by the surgeons but thankfully they never found anything just loads of air.

If it can be avoided putting TPN going into a canula then I think it is a better move. When my lo had the infection they couldn't get a long line in and put it through a canula. The next day they managed to get a line in but couldn't move the TPN as they only put fresh TPN into the line and this one had 24 hours left. Her vein went and she had a big TPN burn over her ankle and foot. It was horrendous and she was in such pain. Theyhad tissue viability & plastics look at it because it looked that bad. Amazingly it healed really well and she only has slight scarring on her foot.

They done 12 doses of indomethacin in our unit as well. I think they may come in different strengths. When we moved from Bristol to Edinburgh the sodium in Edinburgh was a lower strength so it looked like she was getting double but she wasn't.

Thinking of you all going through this rollercoaster journey as it wasn't so long ago I was there too so it's still very raw

Xxx

 

[25weeker]

Sorry we must have been posting at the same time. Hope my post doesn't cause you more worry. Just make sure a nurse is checking the canula as one of the problems we had was the nurse hadn't checked it often enough so quite a bit had went into her foot!

Agiboma - glad to hear your lo is back off the vent

Xx

 

[Agiboma]

ty 25weeker, so i GOT MY FIRST CUDDLE 2DAY best feeling ever i have no words to describe it, Micah tolerated it so well

 

[mumof2kids]

Hi 25 weeker, no i know what your saying re the canula it happened to my sons foot where a vein burst it was horrible and black all around he has a horrid scab which still has not fully gone. I went to the hospital last night to see a Dr sitting there so i knew she was putting a long line in and its a so called short long line if that makes sense. It's in ok and getting his TPN via that. I just hope monday he tolerates the feeds and this time next week the line is out. He was having very less desats than before and if he gets little ones its self correcting. The only thing i found was when he gets handled his HR goes down and desats quite badly and then he does this thing called splinting not sure exactly what this is but im assuming its like holding your breath on purpose. But when he gets suctioned then he is absoutely fine. He is needed less o2 then a few days ago and his blood gases have all been very good but they want him still on CMV to rest as he is on antibiotics for NEC. The physio said that his chest is more clear than before so that's good news. I still want to have a cuddle again with him don't know when that's going to be possible but on sunday the nurse was really nice and when she completed his cares she wanted to change his bedding and let me hold him up whilst she did it and that was so amazing and although he doesnt like handling he had no desats whilst i held him up and he kept looking at me... i loved it! So now the plan is to get to monday without any more tummy problems... his tummy still looks big but to be honest he always had a big tummy and like you said 25weeker they air is getting to his tummy via the vent so they not too worried. Hopefully by the weekend they can try and wean him off the vent again!

Congrats Abigoma on holding Micah... its the best feeling ever!

 

[nineena]

sending oodles more hugs hun, your LO will get used to his mummy cuddles, theres nothing better Really hope things go well and u do get more cuddles soon, its so painful not being able to just pick ur LO up and cuddle them. Sounds like things are still going well though. Your LO is very strong and will keep getting better each day xx

 

[mumof2kids]

Thank you nineena,

Yes I need all the positive thoughts i can get! He is doing well in every dept but breathing! I don't know how long its gonna be now... 7 weeks old today and not off the ventilator... i wasn't in a rush all this time and kept thinking it will happen soon but now im getting slightly impatient with it all... everytime he makes progress some infection or something hinders it and we are back at square one with the breathing. Yesterday his rate went up and pressures... i was so upset. Most nurses won't let me hold him as he is on the vent so that's another thing. Everything revolves around that one machine! Arggghhh!!! Sorry guys im just venting! Don't know what else to do...

When i go and see him he keeps locking his eyes on me and hubby and putting his arms forward... i can see he wants our touch and it's so hard we can't even pick him up.

 

[25weeker]

it must be so hard not getting to hold him. Hopefully it won't be too much longer.

When I couldn't hold my lo I done a lot of containment holding which I found made her really settled and therefore I felt I was at least doing something. Have they shown you how to do this?

 

[nineena]

Sending more hugs hun xxxxx

 

[Agiboma]

yes when i was not holding my LO i did the hand holding where you place your hands firmly (NOt to hard rough though) on their body mostly the head with one hand and abdomen with the other, it was a little comfort

 

[mumof2kids]

Hi everyone I got a chance to do some kangaroo care with my baby boy on saturday it was so amazing!! I can't explain how nice it was. He was holding on to my top and barely had any desat. He was fast asleep and when he had to go back he started to cry bless him! It was really a wonderful experience. Vent is pretty much the same only he is requiring much less o2 sometimes he is on air. He has not put any weight on as he didn't have any milk. But they restarted the milk yday at 0.5ml and will slowly build it up. I hope it goes well. Few days ago he started to put his fingers to his mouth and tried to lick it... think he was feeling very hungry. Just hoping no more blood in stools and feeds establish. And then work towards weaning off the vent! How is everyone else's baby doing?

 

[Anna_due Dec]

Sorry we must have been posting at the same time. Hope my post doesn't cause you more worry. Just make sure a nurse is checking the canula as one of the problems we had was the nurse hadn't checked it often enough so quite a bit had went into her foot!

Xx

Yeah i think that's pretty common. Tay has a scar on his ankle where one of his got buggared up. I was horrified when i i found out. He'd been crying for hours and no one knew why, he must have been in so much pain