Premmie baby due to come home

[premmiemum123]

Hello everyone, many thanks for all your threads and comments, this site is helping me get through the final part of our journey in the premature baby world. My little girl was born at 26+3 weeks weighing 2lb 1oz, she was ventilated for 24 hours then went onto CPAP in air. So far she has done well however it has been painful getting their as she suffered many apneas, braddies and de sats. One apnea lasted 4 minutes and they didn't think they were going to get her back. It was awful but she pulled through. She has had many infections, blood transfusions, PDAs, RDS, anemia so it has been worrying and I know there are loads on you on this site that can relate to this.
My little girls is now 36+4 weeks, weighs 2.1kg, tolerates her feeds however is still de sating down to 31% requiring oxygen especially during feeds, she can't seem to coordinate suck, swallow and breathe. It is really worrying me and the doctors keep faffing about saying it could be low haemoglobin but never do anything about it. Has anyone been in a similar situation? Surely at 36 weeks she should not be de sating? Am tempted to confront the doctors tomorrow, what do you think? I really want her home now but obviously not when I am still giving her oxygen to bring herself back up from a de sat. Trying to stay positive.

 

[K&H]

Im sorry I have no experience in preemie babys. Just wanted to wish you luck and think you should really have a good talk with the dr and get some anwsers. x

 

[bumpsmum]

Hi hun,

and welcome to the boards, congrats on your baby girl, well its been a long 10 weeks or so for you and I can only sympathise Matthew was in NICU for only 17 days and only needed CPAP overnight day he was born and breathing regulated quickly, I would definately speak to the Dr try get some answers. If you get the chance Id read thru Dona's parenting journal - https://www.babyandbump.com/parenting-journals/105275-little-archies-journey-get-home-beyond.html (Dona hope you dont mind think your journey with little Archie will be reassuring to see light at the end of the tunnel )

It sounds like you have a little fighter on your hands and she will come on leaps and bounds , hang tight and feel free to vent and ask questions here x x x

 

[Bec L]

Congratulations on your LO. I hope you get the answers you need and that your LO is home with you very soon.


Sorry to not be much help but just wanted to wish you all the best xx

 

[premmiemum123]

Thanks Bumpsmum, looked at Dona's story and it has helped enormously. My little girl is more stable today so fingers crossed it continues so I can take her home soon. I have completed 72 days in the special baby unit and am finding it hard today, another mum is taking her baby home which I was thrilled about but so envious of. I cried as I will be the only one of the original mums in the nursery. Have decided to have some timeout tomorrow and just do the evening feed, I need to gain some inner strength as I don't have any at the moment. x

 

[bumpsmum]

im sorry you had a tough day it is heartbreaking to watch other babies go home and not your own and after 72 days it will be hard not to feel sad, the other parents you'l have gotten to know well and shared each others experiences, you have a lot of your own to share with new parents starting out now you'll get to know them in no time and hopefully your daughter will be home soon as sounds like she had a good day.

Some days are good and others not to good as you know a bit of time out tomo just to rest or chill out may be just what you need right now and your feed tomo night will feel really rewarding. Hope tomo brings you strenght. What is your baby girls name, what does she weigh? I know you have a lot to take in right now when your more settled a wee pic of your beauty would be nice x

 

[JamieLoi]

My son was born at 27+3 weeks and is ten weeks old today it was a long road getting here and not sure how much longer we've got left of it.
He was also having lots of bradys and desats and still does when feeding but it got to a point where he was having them every few minutes several weeks ago.
After ages of what seemed like the drs doing nothing, they eventually gave him a series of blood transfusions and that seemed to help as he only needs a little more oxygen when feeding. Though sometimes these things sort themselves out in time. I hope this has helped but you just need to stay strong and remember there will be good days as well as bad ones.

 

[nkbapbt]

Congrats firstly on the birth of your LO. Secondly I do not want to worry you, but I just thought I should say this since it sounds exactly like what I went through with my 24+4 preemie. He was silently aspirating on his feeds, so basically when he swallowed a tiny bit of the liquid would go into his windpipe and into his lungs. Which would cause destats.

They had to do a swallow study with him to find this out, which is not scary as it sounds. He basically swallowed some barium and they did a live xray of where the liquid was going. It didn't hurt him, though some barium clearly did go into his lungs.

The cause for him aspirating was due to his paralyzed vocal cord which he got as a result of his PDA surgery.

I am not saying your LO one is doing this for the same reasons, but I would maybe ask if it is possible that she is aspirating? The signs from what I have learnt are there.

And they can aspirate from having an 'off' suck/swallow.

It could be all she needs is a little thickener in her feeds and that will make a huge difference and totally help her. It's worth asking about.

Good luck!

 

[premmiemum123]

Thank you all for your lovely posts...you are all so supportive in this difficult time, I wish I had found you all two months ago.
I woke up this morning with a new strength and went to the hospital. I saw Emily and all my sadness evaporated. She is so beautiful.

Anyway the nurses advised she has not desated for 36 hours so is stable now. She is also not pausing between the suck and the breathing, she previously held her breath for 5-7 seconds but doesn't now. She is off her caffeine and off the monitors, they were driving me nuts. She is now on a sats monitor, I still keep looking at the monitor even though it is switched off.
The only problem we have now is that she won't finish her feeds, she is on 52 mls and only finishes about 30-40 mls each time and the rest they put down the tube in her nose. I had a chat with a sister nurse and she said if there is only 10mls of feed to drink then that is ok Emily can leave it and does not see why the nursery nurses have to put it down the tube. I also mentioned maybe now she is 37 weeks (over 2 months old) she should be on demand feed - just a thought. They discussed it on the ward round with the doctor and they said to try 4 hour demand feeding and see whether Emily finsihes her feeds and puts on any weight doing that. If so then I can take her home, if not they will tube feed her again. I sometimes feel they are force feeding these poor premature babies, I know they need to put on weight but surely at 37 weeks a baby knows when they are full. To add to this problem Emily has (and has always had) reflux, she is on so much medication for it, rantadine, domperdone and infacol and gaviscon, am wondering whether the reflux might play a part in the feed problem. Her reflux contractions seem to start at about 40 mls. She is amazing, she doesn't cry when she refluxes, just makes groaning sounds, she seems to handle her pain, it is horrible to watch. She just does not burp to relieve it. Is there any advice on this site for helping a baby who won't burp to burp.
Premature babies are complicated little things but amazing and strong at the same time.

I really want Emily home now.

JamieLoi and nkbapt, thank you for your kind advice. JamieLoi, I hope your journey ends soon, sounds like your little one is doing well, I hope he is home very soon.

 

[AP]

Hey honey!

It is really worrying me and the doctors keep faffing about saying it could be low haemoglobin but never do anything about it

I know - I have this issue too sometimes but they really really try not to keep topping up with blood transfusions until they really really have to - they will want your LO's bone marrow to work and if LO keeps getting top-ups then it will only delay this. Alex has the same issue.

 

[bumpsmum]

Emily is a gorgeous name, really pleased the two of you had a good day she'll be home before you know it with more days like these x

 

[Dona]

Hello there, just popping in and wanted to say a few words to you which hopefully will help you see the light at the end of the tunnel. I m so happy that Archie's journal has helped you but nothing can take away the fear, anxiety and emotional turmoil that having a premmie baby causes. I can totally understand how your feeling right now, I too was in the same position with Archie. I can actually feel that place now when I type this as it never goes away.

It was nice to read that you LO has not de sated for 36hrs and she is now only on one monitor. That happened to us, one night Archie was back in ICU for de sating and the next day he was back in HDU off all monitors apart from the saturation on. If things can happen that quickly, what will your LO be like in a weeks time!

For us, the reasons they 'think' why Archie was de sating were:

reflux and that he had not learnt to coordinate sucking, breathing and swallowing. I didn't know until then that full term babies are only able to do this at 36 weeks..prem babies a wee bit longer, Archie was 37. He too had to get a blast of o2 which equated to 35%. It was so stressful especially if it happened whilst we were feeding him.

Again, I know how you feel re demand feeding and your LO not being able to finish a full feed. Trust me, but this will come. Think back to how quick things move in a journey like this. These little prem babies hit 38 weeks and something just clicks. They want to get home as much at you want them home. Honest, one day she will be in special care and you wont have seen it coming!

Keep strong and think positive. i know any people would have told you this but the day you leave that unit with your baby finally in her pram, being able to push her out of the doors that you have seen many many Mum's push theirs out of, you will be proud of you and your LO, and journey of being a 'proper' Mother begins. You will forget the unit, not entire, and start to enjoy her.

If you have any questions or you just want to chat, please do PM me. If you read my journal over again you will see that Archie's journey is very similar to your LO and he is doing just grand.

All the best and take care of yourself.

Dona and of course Archie. xxxxxx

 

[jennijen]

I would have to agree that at the end everything happens really quickly, within a week of his last desats sam was off all monitors and on demand feeding! we were thinking he might have a few weeks left in there with any luck, it seems it was only a few days.....and they were asking me to come in and stay the night with him

try and be patient, I know it is hard, but Emily's time will come before you know it x

 

[premmiemum123]

Thank you all so much. Words cannot express how grateful I am to read about your own experiences and hear all the positive things.

Emily did have a two de sats yesterday with me whilst feeding, only down to 60, she did manage to get back up to 79 then fell again and need O2 to get up to 100. As she had not had one for 48 hours it threw me and I cried as I felt it had set us back. She did the same at midnight last night with a brady (heart rate down to 89). She is now having random desats but they are keeping her on the sats monitor thank god! They have questioned a few recent desats as they don't ring true, the monitor will scream 60 however Emily is not floppy, she is moving her head, moaning and groaning as she does then is straight back up to 90s. I don't think the monitors are alway right.
The four hourly demand feeding is going well, she is taking extra feed when she wants it and taking less when she is not hungry. I think the feeds are balancing out.
She is 37 weeks now and I think we will have another week. Dona, your comment about the babies turning a corner at 38 weeks gives me so much hope. This final hurdle is frustrating...fingers crossed.

Thank you all you lovely ladies...

 

[Dona]

Its always this last part which is so frustrating. Honest, you wait and see she will turn that corner in a blink of an eye.

Keep us all posted xxx

 

[premmiemum123]

Whoppee. Emily bless her has put on 95 grams so the demand feeding is working, she has actually proved the nurses wrong (I was right), she has been taking more than her allocated 52mls, little piggy has been downing 63 mls on occasions.
She is still unfortunately desating and had a brady last night but because she does not look sick, is putting on weight and everything functioning normally they have put her desats down to her slow recovery. I think because the doctors have pushed her hard throughout this whole process she is now rebelling and going at her own pace. My thoughts are she loves the nurses so much she does not want to leave...LOL!

We had a lovely day yesterday, we took Emily out in a pram after I moaned that the poor baby girl has not had any fresh air or sun since she was born. A lovely sister called Carol said I could take her out if I want to, so of course I rushed home like a maniac, got her pram and daddy (he didn't want to miss out) and returned to take her out. It was amazing! We videotaped the whole thing. We had to take her sats monitor and ironically the battery on it went flat but we didn't care as she only desats on her feeds. It was lovely.

 

[Madhouse1980]

Hi, well done Emily, that is a great weight gain Thats great that you got to take her out for a walk, how nice, we weren't allowed to take our babies out.

She is doing really well with demand feeding, I know with my little boy, they got to a stage where they let me breastfed him when I was there if he wasn't tired but they wouldn't leave him more than 3-4 hours before they tubed him because they didn't know how much he had got. I did tell them I had a great supply of milk so he was getting plenty but they just didn't listen, it wasn't till I cried and told them to give him a bottle that they actually saw he was getting between 30 and 40ml's more than they were sticking down his tube. So they should listen to us mum's sometimes cause its right, mummies do sometimes know best

 

[BBonBoard]

sorry i dont have any experience, just wanted to wish you good luck.

 

[ClaireRJM]

Ah hun no advice but wanted to say well done for coping so well. My baby only in hospital for 2 weeks but that was tough enough. Confront docs over anything hun, shes your baby at the end of the day, you have the right to speak 2 them over any concerns u have. Good Luck xxx

 

[premmiemum123]

Emily has now turned a corner and has not desated during a feed for a week. I am going to room in tonight!!! I am so emotional today I keep welling up. I am very excited, apprehensive and scared at the same time. I have willed away the time to this very day! I feel like this is all a dream, Emily will finally become our baby as opposed to belonging to the SCBU.
I am rooming in without my hubby as the hospital does not accomodate fathers so am quite scared, I know the staff will there to help but it is not the same without your hubby supporting you.
Fingers crossed all will go well...