Ventilator be gone

Amys tiny little lungs just wont get better. The ventilator is preventing them from growing and healing but she needs it to stay alive. . Looks like the only option we have is to give her steroid. Its not straight forward though, as with everything there are side effects. No point dwelling on them too much though she has to have them. We are sick with worry wondering the effect our decision will have on our daughter. I pay her a visit that afternoon and as I’m sitting beside her incubator looking her she turns her head looks directly in my eye and pulls her ventilator. I can see the pain shes in. She has been very uncomfortable and restless recently. My heart breaks. I’d do anything at that moment to take away her pain. I head back up to the ward and cry into my pillow. I cant wait til the steroids now.

I’ve been here three weeks already and I’m actually getting used to it. I know all the nurses here and the midwifes call over from the labour ward to check up on me. Everyone is so wonderful. Katie is growing at a great rate, she is being constantly monitored too. The day of the steroids finally come, they work a treat!! Finally after 24 days of being ventilated Amy is on CPAP, (oxygen delivered through the nasal passage). Sometimes the little babies cant cope and need the ventilator back hopefully this wont be the case. I’ve been visiting neo as usual and she looks so different now.

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The next issue. .

So coming to terms with the bleeds on the brain and feel better now I understand the ins and outs of it. Amys a very active little girls and has to be sediated to keep her calm, I swear she wants out of the incubator and wants to play !! At this time she is still on the ventilator and she hates it but its keeping her alive. She has cronic lung and her little lungs cant heal while still on the ventilator but shes not strong enough to come off it. AMys consultant calls up to speak to me, I’m having dinner and I nearly choke, I can feel the blood drain from my face, I start to shake. It feels like he is standing there for ages before he speaks but in fact its only a second or two. He starts by saying Amys fine, my face obviously says it all. We need to look at options for her coming off the ventilator.

The bumps in the road start to show.

First off apologies for lack of updates my big babies started back in school and it took me this long to get my backside in gear!

 

The minutes roll into the hours which roll into long days and lonely nights. I tell people not to visit I’m not up to it but to be honest I hate seeing worried faces staring at me not knowing what to say. I still manage to keep positive though. I have finally been able to read some of the booklet we were given from neo natal. Its harsh and I tell myself we are going to have to deal with everything in this, I feel maybe if I’m prepared it wont be as bad if something happens, again I’m terrifed of getting a fright body going into shock and Katie arriving. Amys doing good we are a few weeks in now and she hasnt done anything to cause too much concern. Weight gain is poor but in fairness the baby is trying to stay alive so give her a chance, this is a marathon not a sprint. Hubby and the kids call in. The kids share their school reports with me while dad goes down stairs to have a chat with Amy. The kids are going through each of the good comments beaming with pride. Its so good to see them smile again. Hubby comes back too soon and he is grey in the face…. I know its not good… Shes had a bleed on her brain he blurts out.. OH GOD this is the start of it, and you know what no amount of reading prepares you for it. I’m sick. I ask him a hundred questions there and then, none of which he can answer. When they leave I head down to see whats happening. She looks the very same, and why wouldnt she its internal, just didnt know what to expect. These bleeds are graded and hers is between a 2 and a 3 it goes to 5 which is most severe. Of course I want it fixed  and I want it done now. Nothing can be done I’m told, we have to wait and see what effect it has on her. Ah shite more waiting!!!!!!!

POOOOOOO!!

My day starts like every other, wake up call at 6am for obs and antibiotic, most mornings I’m already awake and the first thing I do every morning is ring Neo Natal to see how Amys night was. OHH todays already looking great. Amy opened her eyes!!!!! not only that she has 0.1ml of milk and……. she did a poo!!!!! so we know her digestive system is working. Wonderbabe. I ring hubby from the corridor and my squeals of delight bounce of the walls. It feels wonderful to feel like this. I ring my mother (today is her birthday) and tell her the good news, the best present she has ever had. I meet a new mammy today too her baby has become Amys roomie.
I cant wait to see those eyes. I’m really excited when the nurses come in later in the morning. Its time to have a listen to Katies heartbeat and often the nurse (if time permits) will have a chat. Again I’m babbling on about Amy when she gently and calmly tells me that its still very early days (shes only 10days old) and in a baby of that size time is still very important. Brings me back to earth with a bang.

I finally get to go down stairs and I nearly expect to see Amy sitting up talking… my imagination is running away with me. Shes asleep and looks the same as yesterday. Maybe if I wait long enough I’ll see her eyes. I ask the nurse tending to Amy about the poo,. Yep u read that right. Colour, shape, size you name I want to know!!! I’m turning into momzilla. I wait and wait and no such luck I’m not getting a wink today. Later that day hubby comes in to see us, he pops down to see Amy and shes asleep again,guess we just have to wait. Seeing the older kids breaks my heart. I love when they visit but its horrible seeing them leave. While hubby is with Amy I have a catch up with them and fill them with sweets and chocolate (just dont tell dad). When they go I lie in bed for my afternoon cry and wait until I see can see Amy later….

Amy when we finally got to see both eyes open big and wide.. Image

Mammy gets brave.

My bed is right beside the nurses station and I hear everything. This particular morning I’m lying in bed wondering how I’m going to get through another day when I hear my name mentioned. Of course the ears are alert and I hear a man asking one of the midwives if I’ve been to see Amy yet, no she said, God I felt like shit when I woke now I feel even worse. Cant they understand that I’m trying my bloody hardest to hang on to this baby. My thoughts and prayers are with Amy every minute of the day. I long to see her but I’m scared. I sleep with her photos under my pillow. After the rounds every morning Katie is monitored for 20 mins. As soon as I’m finished I get up take my dressing gown and walk off the ward on my own. I take the lift and arrive at neo natal unit. With sweaty shaking hands I ring the bell. I wash and gown up, actually I scrub my hands so hard. What if I bring in germs, what if she gets sick because I went in…..
I remember the heat in there and all the machines. Its very intimidating. I’m given a high stool and I sit beside Amys home. The incubater has a quilt over it to keep the light out. I take a little peak. OH my Lord she looks even smaller but in the few days she looks a little healthier colour wise. I chat with the nurses about basic things. I’m thinking of her gettng big enough to come home and secretly they are monitoring her health so closely what different ideas we have. I dont stay too long its not a place for a pregnant woman.
I’m 25 weeks now and the survival rate for Katie has gone up. I’m settling into life here, food is unreal (not in a good way)and being vegetarian doesnt help. I have become friends with the catering staff on my ward, one in particular was a premmie too and she takes extra good care of me.
We get a few presents to celebrate Amys birth. I’ve never really thought about it before but what does one give to celebrate a life that hangs in the balance. My husbands colleague brings us a beautiful set of babygrows. They look tiny and are to suit a 7lb baby, but its going to be a very long time before she grows into them, which is fine because I like a challenge. I get a pretty pink photo frame and I tell my friend the first time I get to hold Amy I’ll get the photo and put it in the frame. I’m the only woman on the antenatal ward with a bump and ‘congratulations on your baby girl cards’ up. Some look at me like I’m cookoo!! and sure thinking back they were right

My new home.

The labour  ward is for women having babies and I seem to be a pregnant woman not in labour so I’m moved to the ante natal ward. I’m in a six beded ward at least in the labour ward I had the room to myself. This is going to take a bit of time to adjust to. I still feel in my heart I’m going to be here for the next three months. I pull my curtains and block out the world. The only time I get out of bed is to use the bathroom. I’m still on tender hooks about Katie making a sudden appearance. My ability to read has dissapeared and I cant listen to the radio. I spend most of my time crying into my pillow. The shock seems to be wearing off and a harsh dose of reality is hitting me straight in the face. My baby might die. Both my babies might die. I never stop praying, hoping or believing but I am now experiencing a new feeling its called fear. The logic side of my brain is shoutting louder than ever before now and I have to accept I may have to bury my baby girl. I try to visualise what the funeral would be like, would I still be pregnant, would I be allowed to go… So many questions. I’m so upset now its time to chill and calm down. I go back to waiting every minute and I’ll deal with whatever whenever.

The strangest things go through my head in the next few days. Things like hubby possibly not walking his daughters down the isle on their wedding day. What my two princesses would look like on communion day. I also think about graves. Head wrecking stuff.

Theres alot of women coming in in labour, I hate to say this but I’m jealous and angry. I havent been back to see Amy I just cant do it. If I go I’ll fall even more in love with her and if she doesn make it I cant comprehend what I’ll do. BUT if I dont go and she doesnt make it will I regret not spending the few precious days with her. I know Ill break down again if I walk into the neonatal unit and it might make Katie come, making me a failure again. You know the saying caught between a rock and a hard place……. well I’m in that place right now.

Im going on a little trip.

IMG_0141

Today is Monday its strange because I’m now 24 weeks and 3 days and I’m also 3 days post partum. Hormones everywhere. Milk starts to come in and I ask about expressing for Amy shes so small she needs all the goodness she can get. After having a chat I decide against it as I am still pregnant. Katie is doing well in utreo still so lets not rock the boat. SOme wonderful women out there have donated their own excess milk which is pasturised and sent on to neo natal units all over the country. As soon as they feel Amy can have some, she will drink doner breast milk. I remember hearing about this a long time ago when I was young and ignorant and thought yuk imagine giving your baby another womans milk. I can tell you now, I am so utterly grateful to those wonderful mammys. My belly looks funny too, my bump where katie is still sits high and firm but the place that was Amys home for 24 weeks is now saggy!! The wonderful neo natal nurses visit me alot today. They bring lots of photos that were taken in the unit. Between seeing the photos and hormones all over the place I cry pretty much for the whole day. God help hubby, not only does he have to deal with his daughter fighting for her life and worry about Katie he now has to listen to me! (He deserves a medal)
Im still on antiboitics and very regular obs. My bloods are clear now and I dont have a temp. The room is starting to resemble my bedroom with boxes of pregnacare and omegas along with food, I’m determined to get Katie as good as I can in the time I have..

Today is Tuesday and I’m brought out of the labour ward for the first time since I arrived Thursday night. I’m brought for a scan. I’m petrified. No need to be though as Katie is as happy as larry. Nothing too strange except for one baby two placentas. On the way back the midwife and hubby suggest calling into see Amy. I’m not sure. I know that must sound awful but I’m so devasted by her arrival I think I’ll crack up altogether when I see her and it will bring on Katie… We pause outside the doors for a minute and I decide lets just do it. I’m in a wheelchair being pushed down what seems like the longest corridor in the world. I’m trembling and I feel sick. I dont remember going into the unit, I just remember standing up at the incubator and seeing my tiny fragile daughter. My head is spinning, my heart is heavy and my soul feels empty. Her tiny eyes are still fused. I can see every rib and bone in her chest. Her fingers are translucent. Jesus why did she have to be born so soon. The tears just fall.

I’m just going to leave the contact details here for the doner breastmilk bank.
04868628333 or from NI call 02868628333.. Thanks