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

[25weeker]

Glad to hear your lo is doing well. I always went out when the eye exams where done as they told me I wouldn't want to see it. Xx

 

[Agiboma]

yes the eye exam are very stressful, and its pretty tough to watch, i am glad that your LO is doing great

 

[mumof2kids]

Hi everyone, had a few good days. My lil boy has been moved from NICU to NICU2 which is like HDU

We were told that he was the most stable baby in NICU so was transfered. I'm so proud of my lil boy. Now he needs to gain weight and get stronger. I can hear his voice now which is lovely

When his cares are done they take of the mask and give him 5 to 10mins without and he is absoultely fine. So the nurses will talk to the Drs whether he is ready for normal C-PAP and then fingers crossed cycling.

I just hope we won't spend another 11 weeks in NICU2 and come home sooner rather than later!

 

[Agiboma]

Yeahhhh so happy for you what's you LO name if you dont mind me asking so we can refer to him by name on the post so happy mamma happy days are HERE

 

[mumof2kids]

My lil boy's name is Aaryan which means noble one in sanskrit. He has been on NCPAP since yday and is doing well on it. Hope he holds on then maybe next week he can start cycling.

How do they decide how much oxygen he needs when they start cycling?

Aaryan also had this first bath he slept like a log after that .

Only thing is that he is not gaining weight on bm and fortifiers so I got a feeling they will use part formula. At first I was upset by it but I just want my baby home so right now I'll do anything. I was told he can start wearing some clothes so looking forward to that. Now I need to find some preemie clothes.

The Drs are still saying there is a long way to go but I think he has overcome such a big hurdle in the last week,getting off the vent, moving on the normal cpap been on air for over a week. I'm just counting the months off and hoping he will be home soon. My daughter was born on xmas day so she really wants him home before December. Can't wait!

 

[25weeker]

I don't think they have a exact science to the amount of oxygen (I could be wrong but it felt like that on my unit) when they are cycling it is just trying it and increasing / decreasing until they get it right. They probably have a good idea where to start through experience.

In the second neonatal unit I was in they didn't use fortifier so Holly was given 50%bm and 50% pre aptimal. Tbh as long as it put weight on her I would have tried anything!

Aaryan is a lovely name. Glad he is doing well and likes his baths xx

 

[mumof2kids]

Thanks 25weeker. Just came back from the hospital. Aaryan's dexamethasone has stopped today so now its time to watch how he behaves off it. Fingers crossed he does not go back to ventilator. So this week is critical. His eyes thank god are the same as before left stage 0/ zone 2 right stage 1/ zone 2, so it has not got worse now it will be checked 2 weekly. Otherwise doing fine 99% of time on air when he cries it goes up to 22%. Going back in the evening once my daughter sleeps. Hope he carries on his good work.

So regarding the cycling do they check the o2 saturations and adjust the o2 requirement? His pressure is still high between 6 to 8 and the said they need to lower that first before the would cycle but if the he can hold on for another 3 or 4 days then they will lower his pressure and may start cycling next week. I hope this happens as he does not really like the c-pap mask.

 

[25weeker]

When they initially started weaning Holly she didn't require oxygen but as she started coming off it for longer she required it. She was still in an incubator at the time so they put it in the incubator. They basically monitored her sats and adjusted it as necessary. When she moved into a heated cot she got the nasal canula for oxygen.

Once they started weaning her off cpap Holly became more aware of it and she started getting really agitated and pulling it so they decided to take it off her for good.

From memory I think hollys pressures where around 4 when they started weaning.

Fingers crossed he remains the same with the meds stopped. We were warned that hollys requirements may go up when they stopped diuretics but they never did

 

[Agiboma]

In Canada to begin to cycle the baby needs to be on room air or close to it at that pointtjey will cycle with low flow cannula if the baby need more they may give high flow canulla

 

[mumof2kids]

Thanks girls... sometimes I feel we should get some medical certificate after going through NICU I have been mistaken for some medical student already, a staff member but the funniest one was when a parent approached me thinking I was a consultant

Aaryan's bed was moved again to another site in NICU2 where the monitors are very sensitive that sats dip even if u move for a second so I'm none to pleased that they did that. As I want an accurate picture of his behaviour especially now dexamethsone has stopped. I did mention it to them but they don't want to move him back to the same site even though its empty.

When I left from hospital last night I think his pressures were 7 so I'm assuming they need to lower that first before cycling. He is still on air and if he has a cry it goes up to 23% but right back down again when he stops. He is having alot of tantrums already he won't take his dummy very well and wants to suck on my finger I think he really wants to bf but I can't with cpap so I can't wait for him to get off it.

He is not gaining much weight so I'm going to push that they introduce some formula to his milk. Since he is on c-pap he is using alot of energy in his breathing and like my daughter he is not gaining weight on my milk.

 

[Agiboma]

I would try to avoid formulla I am so obsessed with breastmilk but on a serious note you can ask them to put fortifiers in your breastmilk that will help him to gain faster my LO was on the max of fortifiers and he had mtf oil also adden to my breast milk and that was working great until he started to take the breast alone which is where we are at right now

 

[mumof2kids]

Yes I personally want to bf as i couldn't with my daughter. And this is definitely my last baby so i want to give it a go. I spoke with the nurse and she is not to give formula and the Dr wants to give him a chance they think the steriods were not letting him grow which he is been off for the past 2 days and he has gained 100 grams. The bm he is getting is already fortified. Fingers crossed that he gains it faster now. I'm getting a lot of support from my mum looking after my daughter so I can spend more time now with Aaryan so I go there after w/r at 11.30am and stay till about 11pm.

Had quite a bad night as one twin who was next to Aaryan in NICU died, her twin sister just got home last week. It was devasting and sent shivers down my spine.

 

[25weeker]

Although they gave my daughter 50% formula instead of fortifier she came home exclusively breastfed and has been for over 5 months.

The fortifier worked for her as well in the first unit I was in. She only went to formula in the second one because they didn't use fortifier and it was a formula for preemies. TBH I would have given anything for her to gain weight as with more weight lungs get bigger and she got stronger.

Fingers crossed the fortifier works and your lo gets nice and chubby.

Xx

 

[mumof2kids]

The main reason why they don't want to give formula is the risk of NEC as he was so premature. He had low sodium and is on a few duirectics too which help him in some ways with re to lungs but makes him dry out too thus weight is not going fantastically.

Today Aaryan had low HB so had a few desats and needed 28% o2. He was given a blood transfusion and went to about 24%. He was off cpap for 20mins in the afternoon and needed some help with o2 but in the evening when doing his cares he was off for a whole hour no o2 no c-pap in my arms and he was happy, smiling, opening his eyes and his blood gas was better than when he was on c-pap. I was so happy and proud of him. The nurse said she will tell the morning staff if he can cycle tomorrow atleast one hour twice in the day. Lets see how it goes. Another nurse felt he may be able to come on end of november which is probaby my limit to sanity. Anything more than that I think I will lose it.

 

[AP]

Thats great hun, its amazing how much they perk up after a blood transfusion!

 

[25weeker]

That's great the transfusion has helped him.

My lo was on diuretics and was on quite high volumes of sodium and potassium. Its because it makes them pee loads as it removes any excess fluid from the body and lungs making it easier for them to breathe. Once she came of them her sodium & potassium sorted itself out.

I hope the cycling goes well xx

 

[keldac]

My first daughter had fortifier mixed with BM and Formula - she then developed NEC and tragically never survived. Having a small baby is better than having no baby. I wouldn't give just anything to make them grow - you have no idea what is going on inside.
When I had Mikayla (also born prem) I refused fortifier and formula altogether. She didn't grow and they kept trying to persuade me - but I stuck to my guns. She is still tiny now at 20 months and only ever put a few ounces a week on - but she is fit and healthy.
I hope you lo makes huge improvments and is home soon

 

[mumof2kids]

Not really a good day, first I think we had the nurse from hell who has never looked after him and she was refusing mostly everything I say. She was obsessed in turning the o2 up and down up and down I don't know how many times she was fiddling with it must have been over a 100 times. He moves and the new machines they have now are apparently very sensitive so if he desats to 80 she would run from where ever she was and turn it up. Even when I was holding him she kept coming over me to touch it. I insisted that she gives him an hour off cpap and she finally did, he was very sleeping so his sats were around 80 and she straight away said thats not good, he can't do it I'm going to do a blood gas in one hour and I know it's going to be bad. I thought hey whats with the negativity. As he was sleeping I had this o2 pipe next to him which I wafted near his nose if he dipped under 85 I think it was 0.5ltr and he lasted the whole hour no bradys and apnea. And low and behold she came back saying gas was ok.. actually his PH was better than the last one. Seriously she stressed me right out. And I think Aaryan felt it. in the morning I was cleaning his mouth as he had alot of secretions. She saw what I was doing but as his head was turned she turned to the student nurse and said look he must be vomiting we have to stop his feeds I couldn't believe it, I was only cleaning his lips! I couldn't believe it!

I also wanted to say I totally understand what u said re formula, I'm very sorry to hear what happened. I really want to give my baby bm and also bf when the time comes. I just hope he gains some weight and grows stronger. Drs at the moment are not keen on giving formula they want to give him time so lets see.

With all this stress he was crying practically all day... I was so scared to leave his bedside with the nurse from hell. I didn't eat anything for over 10 hours with worry. I only left him for 10mins when the nurse swapped to night staff. I spoke to nurse incharge and she tried to explain that if he dips under 70 then touch the cpap but she was obsessed. Then they wanted to check his blood as he has an infection and the blood clotted so they wanted to repeat but this time from the vein and omg did he cry when it happened. he cried for more than one hour straight there was nothing I could do to stop him I had tears in my eyes I felt so guilty that I brought him in this world and he is going through so much pain. His o2 requirement when right up to 33% and until my hubby came and held him everything calmed down and he didn't desat and was relaxed and o2 went down to 23%. What a day I'm still feeling on edge and very stressed

 

[mumof2kids]

I just want to say thanks to everyone's messages... it really helps talking about experiences at NICU

 

[25weeker]

It is so frustrating when you have a new nurse. Up until my lo came off oxygen her sats swung all over the place but she always self corrected. The nurses who knew her would leave her oxygen at the same setting but when she had a new one they were constantly turning the oxygen up and down. I really wanted to stand in front of the machine and say 'leave the oxygen alone'. Eventually I did start saying something as she is my daughter and realised mum knows best.

I hope tomorrow is a better day for you and aaryan and he has put on good weight.

Xx