Can't See the Light

[kaziscool]

You may remember that my daughter, Isabella, was born at 27 + 5 on 5th November. We are now on day 64 & are still in Intensive Care.

Isabella has had so many things go wrong, from developing E-Coli Sepsis, Grade 1 & 2 bleeds on her brain (one on each side), her kidney's shutting down due to a blood clot at the start of her renal vein (resulting in 24 hours on dialysis), PDA that needed surgery & chronic lung disease but I just can't see the light.

She was on the vent for 6 weeks & 2 days before she was moved onto CPAP, during which we weren't allowed to have a cuddle. She has now been on CPAP for 3 weeks & seems a little stuck. The Dr's have just started to try & wean her off by doing 4 hours on & 2 off, but she seems to really struggle after around 1 1/2 hours. She is fully milk fed (24ml every 2 hours) by tube & is putting on weight.

I always believed that she would come home around her due date (31st Jan) but now I'm having to accept this won't happen.

I feel totally lost & just don't know how much longer I can cope with this. Its so tiring & although I know she has come through so much & is still here I can't help been jealous of others taking their babies home.

I really feel like she will never come home & that this is my life forever

 

[angelandbump]

It sounds like you have hit your wall which is normal. When my son was in hospital at the beginning i was running on adrenaline like most new parents do then after a week i went onto auto pilot. Luckily his stay wasn't too long but they told me the next step usually leaves a parent feeling drained and then they hit a wall and are left feeling like 'will my child ever leave this place' and also sometimes resentment to mothers who can take their babies home first.

You and your family have been through alot and your LO has done so well to get to this point even with the upsets. How you feel is normal and you will get over it.
You will appreciate the milestones you LO reaches more then other parents and the day your daughter comes home will make the all the time in hospital worth it. You are doing amazing and your LO needs you to stay as positive as you can (hard i know)

I hope she gets out soon xx

 

[Foogirl]

Our wall was at 4 weeks. It is so hard. Two things which might help, one is to ask for a review with your consultant to see where you are and what they think progress might be. The other is to look for a Bliss support group in your area. It can really help to talk with other mums going through it.

 

[Lottie86]

I know the feeling exactly, you think you start to see a light at the end of the tunnel and it turns out it's the headlights of a flipping big train about to hit you again!

I can totally agree about the resentment of other mums taking their babies home. All the extreme preemies we were in with are looooong home and we're still in hospital almost 7 months after she was born.

Definitely ask to have a sit down chat with the consultant about what is happening, what the plan is for what happens next, what progress is being made etc. There might be small improvements that they might not have thought to tell you about until you speak to the consultant.

 

[toothfairyx]

I know how you feel - I had this badly with my first after around 4 weeks I couldn't see how he would ever get home. I was told that often there comes a point where things just seem to come together and they start to move forwards quickly. For us, this happened just as I was feeling as you describe you are. I know the hold-ups and steps back and steps sideways are frustrating and depressing - I am having these with my second.
Hang in there, and people here will pick you up when you need it

 

[danielle1987]

i think its natural the way u are feeling. I was the same with my lo, we spend 102 days in nicu. I felt terrible jealousy once we moved from intensive care, to special care, our lo was in there for like 2+ months and seemed like all the babies there were only in and then going home. It does get easier, and there does come a point where ur lo will just turn around so quickly and before u know it they will be discussing going home. chin up xx

 

[kaziscool]

Thanks everyone I'm just finding it so hard. Yesterday she moved from CPAP onto High Flow & into a big girls cot all at once. I thought, brilliant things are moving. But NOOOOO, she's back onto CPAP as her PCO2 levels were increasing. They say she doesn't like the High Flow & the only way forward is to wean her off CPAP by having 4 hours on & 2 off to start with, then increasing.

This just completely took away all my joy at the steps forward. I'm now starting to dread calling the hospital as she's doing well when I leave & then goes down when i've left.

Just feeling so low & really don't know how to carry on anymore

 

[angelandbump]

I really wish i could say i understood but i don't. What your going through must be hard and I just want to say that you are doing so well even know you don't feel it)and i admire the strength you have even though you can't see it at the moment.
They say in life we must feel sadness to understand happyness and you out of all people will appreciate all the good things as you know how bad things can be. I'm here if you ever need a chat xx

 

[vermeil]

I`m really sorry kaziscool... you`re right, it`s very, very hard and draining, and you feel like with every step forward you take two back.

My son was a 27 weeker also and he too hit every possible complication - sepsis, kidney problems, NEC, pulmonary hemorraging, etc etc. He was on ventilation for weeks, then cpap, then ventilation again, back and forth for 3 months. THEN a week or two before his due date he finally tolerated the O2 for brief periods - 30 minutes at first. It was heartbreaking to see him struggling soooo hard to breathe on his own. He looked soooo exhausted I would plead the nurses to call the inhalo to put him back on cpap. It took weeks of that back and forth until he finally tolerated it well enough to move to O2 only. THEN it took a month for him to be weaned off the O2.

I remember all too well the frustration, the never ending bad news. Every time the phone would ring at home my heart would stop. Even though the hospital told me time and again they would not call home until it was very serious. They only ended calling twice in his 105 day stay. But still I panicked every time the phone rang. I felt like he would NEVER leave the nicu. He finally left 3 weeks past his due date.

If you want send me a pm and we can talk - or yes, I went to regular meeting of preemie parents and they helped... sort of. As you said EVERY other baby left the nicu before ours, even a few 24 weekers.

I know it`s hard to believe right now but that magical day does eventually come *huuuugs*

 

[x-amy-x]

My connie was born at 26 + 2 and is 3 weeks old today. I'm feeling like there's no end too. Feel so helpless. Yet part of me doesn't want to be too attached and get my hopes up too much either. Can't be happy with her progress for fear of what tomorrow might bring.

If you need an ear from someone who is on the journey too, my inbox is open.

xxx

 

[25weeker]

kaziscool & x-Amy-x

Nicu is a rollercoaster and all the feelings you have a part of the process. My lo was in 100 days in total and there were times I thought we would never leave the hospital.

We are all here to support you on your journey and celebrate when you do bring your lo home

Xx

 

[vermeil]

We are all here to support you on your journey and celebrate when you do bring your lo home
Xx

yes exactly!

 

[kaziscool]

Well we are now on day 77 & although things have moved on quite a bit, I feel more depressed now than I ever have.

Isabella is now on low flow o2 & in special care, all she needs to do is learn to feed & we can go home but I'm so frustrated. She's on 4 hourly feeds of 57ml. Today she breastfed at 12 & didn't have a tube top up, but come 4 she was still fast asleep & showing no signs of waking, so they gave her a tube feed. That really annoyed me as she obviously wasn't hungry or she'd have woken up. I just feel like they don't want her to feed properly & its easier to just tube feed her.

Will I ever get my baby home? I spend most of the time at the hospital crying as I can't see anyway out & that nobody understands what I'm feeling.

My request isn't much, I just want my baby home

 

[bek74]

My Paed use to say to me when I hit a wall was " I need to remember the things we are asking them to do, they shouldn't have to do yet"
Remember your little girl isn't supposed to breathing O2 yet, she isn't meant to be breastfed yet, she is meant to be tucked away inside u.
It is so hard, mine were 28weekers and we watched new babies come in and leave before us and I would cry and think when is my turn. My Paed again would remind me that life isn't a competion and that mine while reach each milestone at their own pace and not rush, that we are already asking so much from them.

As to the tube feed, they can't let them go past 4hrs. Prem bubs should be fed every 3-4hrs regardless.

 

[katy1310]

We hit a wall after 10 weeks in NICU. Sophie had made lots of progress but then suddenly seemed to be taking a few steps back with the feeding and breathing, and they started talking about sending her home on oxygen, when she'd been doing so well up till then.

It was only a couple of weeks after that point that she came home but it felt like an eternity. I think it gets really hard when you've been in there for ages, but you still don't know when the end is in sight. At least at the beginning you're prepared for a long time in there and you know it'll be at least till around the due date, but then when the due date approaches and there's no sign of getting home, it's so tough.