How do you deal with it?

[Skadi]

I'm having such a hard time dealing with not having Keira WITH me and I am not sure what to do. I mean I can visit her whenever I want but its not like she is coming home anytime soon and I'm finding it just ridiculously hard to deal with to the point where I can't sleep and I get super upset.

Luckily we live close to the hospital so I can come see her whenever I want but this just isn't what I had planned for and it all happened so quick I never got the chance to adjust to the idea that she would be early and away from me.

It's also really hard dealing with not being pregnant but feeling like I don't have a baby even though obviously I do. Is that normal??

 

[vermeil]

yes, that`s perfectly normal!! Please don`t berate yourself or think this is wrong in any way!

Speaking with the nicu`s psychologist (and we had a rough journey so boy did she become a good friend) she explained to me that having a preemie, even a late one, is a bit of a bereavement. Parents will typically go through the same stages as grieving. I sure as heck did. Why?? Because you must put to rest your hopes and dreams of that perfect, lovely birth. Of those first magical cuddles and intimate memories. These are replaced with shrieking alarms, bright lights, a constant rotation of staff tending your precious bundle of joy as you watch on, powerless. Oh boy how much that`s all true and then some.

In fact I have a confession. It took me a good 6 months to become attached to my son. Oh I loved him right away, but not in an 'omg I LOVE this little creature and must protect and nurture him!' way. That voice just wasn`t there. It took weeks for my son`s condition to stabilize enough for them to tell us he would probably survive... That`s also VERY normal of preemie parents and NOT something to be ashamed of!! It`s our bodies natural defense systems protecting us when we feel we might lose our precious babies. But trust me that later having a preemie develops a special bond, that little memory of what you overcame together. My son is 17 months (corrected) and there`s not one hour that goes by that I don`t recall how wonderful it is, how blessed we are to have him in our lives.

I hope you have your little Keira home with you soon. Until then cherish every day, I know the nicu stay seems to last FOREVER but it does fly by in the end and first thing you know it`s already in the past, a vague painful memory. A trick I found helped was to ask to bring one of the baby`s blankets home with you. There`s something about the scent of our little ones that is comforting and reassures us that they`re almost by our side, just a bit farther for a short while. I also took many videos and watched these when home.

the nicu journey is very, very hard but it gets just a little easier every day *hugs*

 

[Skadi]

Thanks! That makes me feel so much better, I think I am going to find someone to talk to about it. I just feel so bad about feeling this way!

 

[OnErth&InHvn]

DD1 was in the NICU 2w (i know not as long as your baby) but i had issues with her being away. Even when i got released i felt like " I should have a baby, not a NICU pass on my wrist". It helped to plan things. Get things set up for her,go see her and be there as much as possible- bathe (yes even sponge bath/wipe), feed, change, touch, sing, talk, heck even sleep in a corner. I annoyed the drs and nurses so much, i wanted to know everything- what was the next step, what was the next milestone, etc. every little thing was a celebration!

and doing Kangaroo Care helps a TON!! Look into it.

 

[Skadi]

Yes, they plan on working our way up to kangaroo care but they need to make sure she is breathing on her own properly before it happens. I'm sure that will make all the difference!

 

[Jen1802]

I felt exactly the same way! The worst day of my life was the day I was discharged from the hospital and walked out of there knowing that I was leaving my baby behind. It was the most head wrecking moment in my life and just totally went against every natural mother instinct I had. All I can say is do speak to the psychologist attached to the nicu. They really are worth their weight in gold! Mine also said about the grieving process and how it is natural to feel this way, you've spent however many months visualising in your head how your pregnancy would progress and what sort of labour you would have and then its just ripped away from you. It will get easier though. You'll get into a routine and although its hard leaving her behind everyday you need to be your best friend instead of your enemy. My husband kept telling me to be think logically when I used to get upset, he would always point out the obvious and be quite pragmatic in that there was only so much both of us could do for her and it wasn't us she needed right at that point it was the specialist staff and their expertise that was keeping her with us. Hard to think logically during this time but if you've a friend or partner who can help keep you together then all the better! xo

 

[Skadi]

I felt exactly the same way! The worst day of my life was the day I was discharged from the hospital and walked out of there knowing that I was leaving my baby behind. It was the most head wrecking moment in my life and just totally went against every natural mother instinct I had. All I can say is do speak to the psychologist attached to the nicu. They really are worth their weight in gold! Mine also said about the grieving process and how it is natural to feel this way, you've spent however many months visualising in your head how your pregnancy would progress and what sort of labour you would have and then its just ripped away from you. It will get easier though. You'll get into a routine and although its hard leaving her behind everyday you need to be your best friend instead of your enemy. My husband kept telling me to be think logically when I used to get upset, he would always point out the obvious and be quite pragmatic in that there was only so much both of us could do for her and it wasn't us she needed right at that point it was the specialist staff and their expertise that was keeping her with us. Hard to think logically during this time but if you've a friend or partner who can help keep you together then all the better! xo

That is true! I'm also blessed to be living a 15 minute walk from the NICU so I can literally go see her whenever I want... which has been from morning until OH is done work and then 3 or 4 hours at night. There are NICU parents who live out of town, I can't even imagine that.

My discharge day was a nightmare... my parents dropped me off at home and OH was at work so I was alone and I just couldn't stop crying. This just really wasn't what I was planning on at all... not even close.

 

[kazzzzy]

I found it extremely hard being away from Emily (born at 27 weeks - weighing just under 2lbs) we were an hour drive each way to the hospital & I had a section so couldn't drive for the 1st 6 weeks & as DH was working I had to rely on friends & family for lifts - they were great but I felt I couldn't stay too long as they were waiting outside for me so some days I only got 2 hrs with her which was so hard, we just tried to concentrate on getting her home, doing up her room etc as a distraction. I found the nights the hardest I couldnt sleep as I was missing Emily & worried about her but the time went fast enough & after 11 weeks we got her home, the best day ever!! Take care of yourself as best you can & hopefully your LO will be home real soon xx

 

[Jen1802]

Kazzzzy that was the same as me! We lived over an hour away from the hospital and I remember the first few weeks going up somedays to only have to leave within half an hour because my lift had other commitments. I still feel so sad thinking about the days when that happened even now.

 

[Skadi]

Oh wow, I really couldn't deal with that. I'm so happy I live a 15 minute walk from the NICU so I can ALWAYS go see her.

 

[Jen1802]

It was horrible Skadi! I can't even begin to verbalise properly how horrendous that period was and I'm so glad that you are not having to go through that and live close enough to the hospital that you can be there as much as you want to be. Its funny one of my friends had her baby at 32 weeks and he was two beds down from my daughter and they lived really close to the hospital so did 24/7 shifts between the two of them and I couldn't help but feel jealous and miserable that they were getting to see more of my daughter than I was at that time. It doesn't seem such a big deal now but I remember coming home every day and sobbing for hours about it. How is Keira? xo

 

[Skadi]

She is doing really well. She was all smiles today, it was just adorable. (I know it was probably just gas but she still seemed so happy.)

They are talking about moving her to a level 2 facility (McMaster is a level 3 - so meant for babies with real health issues). Right now she is flying past all their expectations and has quickly graduated to just not needing any help other than with feeds. I really don't want her to move though as the other hospital is downtown and just not nearly as convenient... plus that means we will have to get a parking pass which we can't really afford as I had budgeted the next few months based on full pay. It's a little stressful to think about but I guess it could be worse - like transferring her to another city!

 

[Jen1802]

That's great news that she is doing so well and so quickly! Try to see the positive in moving to the lower level unit, it means there will be a neonatal bed free for another little baby who needs it and another set of parents having to go through the same thing. Plus if she is doing so well with the feeding she could be home within the next 6 or 7 weeks. When I went into hospital in pre term labour they had to send me 140 miles away to a hospital that had a free neonatal bed as the specialist hospital closer didn't have any free beds. I got transferred before dd was born to the closer one but the midwife at the time basically told me to wise up and not get upset as at least I was getting sent to a hospital in the same country. I live in Northern Ireland and if there had been no free neonatal beds in any of the hospitals equipped to deal with such a premature baby I would have been sent to a hospital in England or Scotland. Definitely put things in perspective for me! lol. xo

 

[Skadi]

That is true, we were lucky there was a bed for her at my hospital. One of the nurses was telling us that sometimes babies get sent to Buffalo, NY or Ottawa at times if they are full. I can't imagine having my baby sent that far away.

 

[kazzzzy]

Hi Jen, It was very hard going all right being so far from the hospital, I get emotional thinking of it too & have started dreaming about it lately, the guilt was unreal but I suppose I have to start putting it behind me now that Emily is doing so well, hope your special premmie is well x

Kazzzzy that was the same as me! We lived over an hour away from the hospital and I remember the first few weeks going up somedays to only have to leave within half an hour because my lift had other commitments. I still feel so sad thinking about the days when that happened even now.

 

[Jen1802]

She's doing brilliantly kazzzzy, she's up to 8lbs 14oz following her consultant appointment on Friday and they are really pleased with her progress. She's developing at the proper rate for her adjusted age. Still have loads of appointments though, the next big one is in June with the pediatric cardiologist to assess her heart defect, the rest in between now and then are just the typical physio, dietician and hip scan appointments. xo