A premmie Mum’s Diary

This page is to share some of what I am going through. I was thinking of starting to write it when I was in hospital, but am probably in a better frame of mind to start it now. Having a baby and looking after a newborn is never easy and never the same. This is my story and experience with my baby girls. New sections will be added to the bottom of this page as my story unfolds.

Lead up to the birth (added 28/3)

A little bit of history, on Monday 14th March I was booked in for a scan at 9:30am. I took very little with me. We were going for a scan, a tour of the nursery (NICU) and to meet one of the doctors. We had to be back by 1pm for Matt to start work.

By about 1030am we had been told I wasn’t going home, I was being admitted immediately and that unless my scan was better in a few hours I would be having my babies that day. Thankfully the scan wasn’t as dire in the afternoon, however I still had to stay until the next day when I would have another scan. Matt had to travel in and out of Randwick twice that day just to bring me some essentials to stay overnight.

On Tuesday I was hoping to be told I was able to go home after my scan, instead I was told I would be in hospital until at least Thursday. One of my major thoughts during these two days was “I only said bye to the boys, as if I was coming home that night. I never said goodbye to them properly or told them I wouldn’t be home.”

On the Wednesday I had my daily CTG earlier than usual, it had been taking 2hrs to get a 20min trace, because Ellie would not stay still for long enough. I was chatting to the NUM of the ward I had gotten to know quite well, after 6hrs of CTGs (I was able to distinguish between their heart beats after about 4hrs), and she asked one of the nurses to show the trace she got to one of the doctors. It was not looking good. Whenever Ellie would go tachycardic (high heart rate), Hannah’s heart rate would drop. The doctor came up to my room and ordered a magnesium drip (to help the babies brains), I thankfully had already had my two steroid injections on Monday and Tuesday (to help the babies lungs prepare for early arrival).

The doctors were very reluctant to 100% make a decision either way, which meant Matt had time to come into the hospital and I got a chance to have a shower and try to comprehend what was happening, I was very emotional and upset because I didn’t feel ready to have my babies yet. I got taken down to the delivery suite for more CTGs to see if anything else had changed and for the consultants to discuss my situation, so it was actually 3 of them making this decision, rather than just one. It took until the last minute for the doctors to make the decision. After all the medical teams were in place I was told, yes you are 100% having your babies, now. This was just after 1:30 and the girls were born less than an hour later. A million emotions were running through me and my fear of needles was thankfully overruling them all and gave me something to focus on. I was terrified of getting my spinal block, but once that was in I was in theatre and not long after that my baby girls got there first taste of air.

The First 12 Days (added 28/3)

The first few days are a bit surreal and feel like a dream now, turns out I also have a few memory gaps. I was on VERY good drugs (due to the girls being born so early I had a classical caesarean, which is a 15cm horizontal cut on the outside and a vertical cut up my uterus on the inside). When the girls were born they held Hannah up and I got to see her briefly, when Ellie was stabilised they bought her to me for a very quick kiss. Seven hours later I was able to go down to the nursery, in my bed, and see my girls for the second time ever. Matt had to hold me up so I could sit up and see my girls. All I could do was look, I wasn’t able to touch my girls for another day or so. I have still never kissed Hannah. That first night I didn’t sleep, but I wasn’t up watching my baby in their little bed like I did with the boys.

One of the major things that overwhelmed these first days and had a strong influence on my roller coaster of emotions was breast feeding, many new mothers angst’s. I managed to hit the trifecta for milk either not coming in or being delayed, a separation from my babies, having premmie babies and having a caesarean, my body was not prepared or ready to have the girls. Even if people asked innocent questions about my milk coming in I couldn’t handle it, I felt pressured, stressed and that people were telling me I wasn’t doing well enough or trying properly. People were not doing this but in my post major surgery and post delivery hormone haze I found this so hard. For the first 6 days I was expressing by hand, extremely difficult, and would only produce 0.2mls – 0.6mls most times. This was often not enough to feed both the girls and they would have to take turns receiving it. I am now still expressing 6-7 times a day, every 3 to 4 hours and I often still wonder if I will ever have enough to feed both the girls once they are both on full milk feeds. I may not have my babies at home but that doesn’t mean I get anymore sleep than new Mums with their babies at home. Let me just share that getting up in the middle of the night and expressing is very unsatisfing, there are no hugs, no special moments.

Being a premmie Mum is not like anything I have ever experienced, yet I feel like I have been a premmie Mum for ages. There are challenges that I have no other option but to face. One major challenge was coming home and leaving the girls in hospital. After being able to go and visit them anytime I wanted for 7 days, I was going to be restricted to only visiting them for a small amount of time during the day. Levi came to pick me up to ease the pain of leaving my girls in the hands of very qualified strangers and to remind me that I have two amazing boys at home that still needed their Mum.

What I wasn’t expecting was for the girls to start their true premmie journey by showing their struggles and backwards steps as soon as I left them. That again has resulted in tears and anxieties and the need to just pray and ask for help because it all becomes to much to bear sometimes. It is these times when all of the messages of encouragement, posts on Facebook (that I never reply too), meals provided and prayers said that help to lift me up and remind me that I don’t have to do this alone.

Today is the first day I will not see the girls since they were born. I am having my first much needed rest in 11 days. I am thankfully healing well, but still get quite sore at times. Matt went in and took photos of my babies, held them and told them their Mummy loves them and misses them. I am getting emotional writing that, there is a fine line between guilt over not giving everything to your kids and looking after yourself so that you can give them even more. My babies are where they need to be, they have amazing doctors and incredible nurses with them and I know that one day they will be home with their family.

Expressing, blah! (added 29/3/2016)

I love my kids, but I’m not a big fan of breast feeding. I have never felt that connection or that closeness to my kids while I am doing it. I have no problems with it, I have just struggled with it myself.

Now expressing….. that is another whole story. In some ways it’s easier because a machine doesn’t have to learn how to attach, you just get straight to it. However it is extremely difficult when your alarm goes off at 2am (and you know it is set again for 6am), you don’t actually have a baby to hold or hug, you’re exhausted and you know that one of your babies currently isn’t having any milk and the other is only having 6mls every 24 hours (Hannah is now having 12mls every 24hrs).

The one thing that keeps dragging me back to that machine 6-7 times a day is knowing that Ellie was tolerating milk well before she got her infection and it will be amazing for her when she is better. Hannah can barely tolerate breast milk, her little tummy couldn’t handle anything else. So I will plod on, hope that one day I have enough to feed both the girls and in the meantime keep filling up the freezing.

Glass of milk anyone?

What a beautiful day today is. (added 30/3/2016)

Reasons why today is amazing:

1. I got to hug one of my baby girls and give her first ever kiss.
2. I got to play Rummikub with my biggest kid and his incredible Dad.
3. I got to spend time with a great friend.
4. I actually had time this afternoon to play with my boys, thanks to dinner being thought of and cooked for us.
5. I have four amazing children, amazing and thoughtful sisters, incredible family, loving friends and a community that doesn’t seem to stop giving in ways that continue to surprise us.
6. Most importantly my baby girls are 2 weeks old, the same baby girls that weren’t meant to make it through the pregnancy, the same baby girls we were told the only way was to sacrifice one to save the other, the same baby girls we were told it would be better to ‘lose’ them early than to have very premmie babies. My girls are alive, they are changing our lives and influencing the lives around us. They are surrounding us in community, love and prayers. They are hopefully giving people hope and faith in the world around them. They have made me feel like the most blessed Mum.
7. I got to hug and kiss my baby, a baby who some believed would never live outside of me.

 

Hannah and Mummy laughing with the nurse

1st hugs with Hannah

 

 

 

 

 

 

 

 

 

Balance (added 4/4/16)

It’s a hard balance, knowing what you have to do, what you want to do and what you need to do. You may think the above are all similar or even the same, for me they are at times monumental decisions, guilt ridden days, self judgement and forced acceptance.

My second day ever away from the girls today and it was a massive decision because I won’t be able to see them tomorrow either. I was anxious for news, minute details and photos. Ellie has been reasonably stable but is still very unwell, it is so hard being away from them, my heart is breaking even though I can hear my boys laughing and chatting in bed, they need their Mum as well.

I chose to have a day off the hospital today because I wanted the boys to feel like I was still around and to give Levi a break, as he has been baby sat at least 5 days a week for the last 3 weeks. The boys love the amazing people they have been staying with, but watching their behaviour I knew they were in need of a day at home. I still can’t do a lot with them but they knew I was with them all day and sometimes I think that is all they really need. The boys worn me out but it was so nice spending time with them, it also gave me an insight into how crazy our household will be once the girls come home.

I have had very little control over the outcome of my girls future for such a long time now, basically since I was 11 weeks pregnant almost 19 weeks ago. Accepting that the nurses and doctors can look after them better than I can isn’t too hard. Not knowing what will happen next, not being able to drive myself and just not knowing them as well as I would if they were at home is much harder. I don’t know if my girls have been upset or settled, I don’t know the people caring for them. I don’t think I will complain about dirty nappies ever again, having so much taken away helps you to appreciate the tiniest thing you can do. Yesterday Hannah was quite unsettled while we were having hugs, the nurse was hovering a little to see how I would react. But it was the most amazing, beautiful time for me I could finally do something for one of my babies. I held her and sung to her and chatted to her until she settled into a sleep, it was amazing. I thought of sleepless nights when babies just don’t want to be put down. Exhausting days when babies just want to be hugged. I sat there smiling at my baby girl while she grumbled and cried. I couldn’t fix the prongs in her nose that made her grumpy but I could comfort her, for the first time in her life I could do something to help.

I miss my girls, every minute I am away from them. I also know I would be hindering my own recovery and the nurses work, not to mention the rest of my family if I tried to stay with my girls for longer than I do. Balance. I hate balance, I hate having to do things, wanting to do things and needing to do things. I want my crazy life with four healthy kids at home, I want to be stressed out and happy if the kids are fed and the bare minimum is achieved in a day. I want to struggle to get four kids out of the car so one can go to school, I want to try and entertain a 2 year old while feeding two newborns. I don’t want every decision I make based on balance, I want my decisions to be based on how to get through the day with four kids in one place.

At the moment my wants are not considerations, they are only the future. At the moment I have to concentrate on trying to get the balance right and pray that one day in the hopefully not too distant future Matt will walk in the door and find me exhausted on the lounge, with the house a pig sty and piles of dirty clothes in the laundry and four kids in our home. That will be a day to celebrate.

No one has told me how to act (7/4/16)

I have accepted that I am totally incapable of taking care of my girls. I was talking about just stealing Hannah away and taking her home while we were having hugs the other day and within 5 minutes the nurse was next to me poking her and I asked what was going on and the nurse said her heart rate had dropped (they give them a gentle poke to remind them to get things working again, normal premmie thing). However the point is I didn’t even notice. So knowing I can’t look after my girls is a very easy thing to accept at the moment.

It is so normal for me to go and visit them and do what I can for the 4 hours I am there each day and then go home again. Sometimes I think I should be there more or have them on my mind constantly. But frankly there is nothing more I can do for them at the moment, particularly Ellie, other than give Hannah hugs and keep trying to produce milk for them both. This feels normal to me now.

I was told today that any parent with a child that was ventilated would be stressed. I’m not sure I’m stressed exactly, I know it is what she needs and that when she is ready the doctors will try something else. I do eat a LOT of chocolate but I think that is more due to it being delicious and the fact I’m generally always tired. Should I be stressed? I was told today that I will be bringing two girls home (unless something unforeseeable happens, as is life) and I’m so happy with that, it could be 4 or 5 months but my girls are out of the biggest danger zone now. They will still go up and down with their health and progress but they were born at 26+6 weeks! It’s a miracle that they survived the pregnancy and delivery (my chance of them being stillborn was significantly higher than that of an average pregnancy, 10%).

Should I be stressed or more worried? I ring to check on them every night before bed. I’m just so excited they are here and I can see them and talk to them and touch them. Maybe it’s different for me because of the crazy pregnancy I had (see A Little History, if you are curious) or because when I go home I’m distracted by two little boys. I don’t know. But what do you say when people keep asking you how are you? I feel like I shouldn’t say great my girls are alive, but I am tired. Usually my answer reflects how the girls are going that day because that does influence how I feel to some degree and I think people kind of expect it too. Maybe I’m just happy today because I’ve eaten Ellie’s weight in chocolate and the girls are having a reasonable day or maybe I’m still on a little bit of a high after hearing Ellie healed her own heart. Who knows, but if anyone has a good answer to “How are you going today?” I would love to hear it.

Sick day (updated 10/4/16)

I knew the time would come. I’m not sure any family could get through 3 or 4 months without someone getting sick. I just didn’t expect it to happen so soon and secretly hoped it wouldn’t happen at all.

Today is my day off the hospital, always a bit of a hard day, but I know I need the rest and it’s nice for Matt to have a girl day on his own. However last night Nate was up with a tummy bug. So no one is able to visit the girls today, we have to wait and see if it is contagious (see if the rest of us will get sick). It is very hard knowing Hannah will miss out on her hugs today and we aren’t there to tell Ellie we love her, to keep trying her hardest and giving her head holds and comfort. The only comfort is that the girls are actually having a reasonably good day. I think it is harder for me because I have been so exhaused all week. Both girls are back on milk feeds and I’m realising very quickly how much two babies need. I always knew I wouldn’t have enough milk simply because of the circumstances they were born under, but the reality is being realised very quickly. Doesn’t help that I left my milk at home yesterday and I’m not going in today. Lucky there is still a freezer full from when they weren’t allowed to have any milk.

Hopefully we are all feeling 100% tomorrow and I can give my baby girls some love.

Perspective (12/4/16)

Driving to the hospital today I got stuck in bumper to bumper traffic about 20kms out from the hospital, it was about 9 so usually peak hour has finished by then. I heard on the radio that there was a fatality on the M7 and I assumed that was why I was in so much traffic. I started thinking about missing out on time with my girls because I was stuck in the car, I still had to get to the hospital, express and try to spend some time with Ellie before Hannah’s cares and hugs. Perspective. Then I thought about the family that had lost a family member that morning, their Mum/sister/wife/daughter had just died and I was worried about missing a little bit of time, her family will never get anytime again. This perspective didn’t ease the traffic but it was no longer a real concern either.

I am having more and more trouble trying not to compare the girls at the moment. The better and bigger Hannah gets the more obvious it is to me that Ellie isn’t improving, I know I shouldn’t compare them but it is hard. I was chatting to a Mum in the pumping room this morning and we were talking about our kids progress and I mentioned it being hard to not compare the girls. She made a point that there are a few babies that were born just over the 500g mark in the nursery at the moment and that the smaller ones are always slower at progressing. Perspective. As we chatted I thought about the 480g difference in my girls sizes when they were born and realised that weight isn’t far off the weight of some of the other babies when they were born. There was almost a whole baby difference in the girls weights when they were born, that is massive. Ellie will travel her own road.

Today I witnessed one of Ellie’s crashes from start to finish. I realised something was happening and I just stepped right back and got out of the way. I didn’t ask questions, I didn’t yell or scream or cry I silently stepped back and let the professionals save my baby’s life. One of the nurses that I knew did come over halfway through and reassured me and explained what was happening and the particular things they were looking for and how they were helping her. It was strange my perspective was that of an outsider, yet Ellie is my daughter, but there was nothing I could do, except get out of the way. I was actually thanked for being a calm parent. It was a bizarre perspective and the amazing staff still tried to include me by explaining what was happening as they always do. The doctor also had a quick chat to me once Ellie was stabilised to tell me what he would like to do to help her more. It was a perspective I wouldn’t ever wish on any parent, this perspective is the norm for us at the moment. I look forward to the day it can change.

It’s been awhile… (26/4/16)

Over the last 2 weeks I have had times that I have had something I’ve wanted to add to this (hold on just remembered I was meant to express 20 minutes ago). Well maybe it would be an appropriate moment to talk about time. No one ever feels like they have enough time, time seems to just vanish for me at the moment. I think it is partly because a large part of my day is consumed by driving and being at the hospital and partly because I am so tired I am not working at full capacity so things take longer.

Not for the first time, Matt came home from work last night and started talking to me. I couldn’t understand why he would intentionally wake me up and after grunting at him he had to ask if I was asleep. I couldn’t work out why he asked me this until I opened my eyes, saw my bedside light shining on my head, my computer screen inches from my face playing a video with the sound up. This has happened twice now, I don’t think I have ever been that good at sleeping and I have a kid that didn’t sleep through the night for the first 21 months of their lives. With all the driving I do I ensure I get 5 – 7 hours of straight sleep each night, but it is always a toss up of will this affect my milk supply, with it will be worse if I crash my car. You will be glad to know not crashing my car has won out so far.

I got diverted. Time. 41 days – 6 weeks tomorrow, in some ways it feels like nothing yet I can’t really remember being pregnant anymore. It feels like this crazy routine (that we wouldn’t be able to uphold without a lot of help) is the norm. I feel like I’m missing big chunks of the boys lives, I don’t know what they are doing all the time, I just don’t know them as well as I did 6 weeks ago when I was around them all the time. I have a feeling this is going to be both the longest and quickest 3 or 4 months ever and then I get to bring two newborns home that will be on 3 hourly feeds and I won’t have any nurses around to look after them. Maybe it will be a long 6 or 12 months. No matter how tired I get or how hard it is I think it will be easy to remind myself it is worth it and that a lack of sleep and a little sacrifice is nothing compared to having 4 amazing kids at home.

Two different Mums (28/4/16)

To start I just wanted to say thank you to everyone for your prayers, support, love and encouraging words. I kind of use this page to vent and write down random thoughts sometimes, thanks for sharing in it with me x

This one is a little difficult to explain. But there seem to be Mums of big babies (born over a kilo or close too) and Mums of little babies (500-800grams). Having a baby in hospital is tough for all Mums, but there seems to be a distinction between these two categories. The bigger babies tend to take a different course to the smaller ones, they are the Mums that don’t seem to hang around for as long, especially in level 3.

Due to this difference I feel very torn at the moment. I have been getting a long quite well with two Mums, one Mum had a small baby we talk about how her boy and Ellie are doing, they tend to be taking the same path (except Ellie is 6 weeks later/younger), they have had a few of the same problems and are both slower at reaching milestones- a can’t think of a better word for it. The other Mum is the Mum of a big baby, they are in level 2 and have been for a little while, her son is 2 weeks older than Hannah and she seems to be following the same path as him. Having set backs but no as many and showing improvements much quicker.

It is so strange being on two such different journeys. If Hannah progresses perfectly and has no setbacks she could potentially be home in 3 or 4 weeks. Ellie still has a very long road ahead. Some days Hannah’s Mum wants to cheer and get excited because of her amazing progress and can begin to see a tiny light at the end of the tunnel. At the same time Ellie’s Mum is crumbling inside and trying her best to hold it all together because she can see just how long her journey still is.

Some days it is very hard to know how to feel and not become overwhelmed.

I’m tired, but not… (13/5/2016)

It has been an odd week. For some reason it is this week that it has hit me like a slap to the back of the head, that my babies could have died. Particularly Ellie. When she was two weeks old she had a massive crash, it took at least two nurses working endlessly for hours to save her life, plus the doctors that were on. They had to extubate her, re-intubate her, give her morphine and paralyse her. I remember the day clearly, I never once thought my baby might die today. Why 6 weeks later I am having that revelation, I can only put down to: after chatting with another Mum the dawning realisation that not all the babies that go to the NICU get to go home. It’s probably bad timing coinciding with a week that Ellie has needed a bit of extra support, she seems so big and strong to me now and she is, but she is also incredibly fragile and small.

Dr Seuss

The girls are 8 weeks old, I have been travelling to the hospital about 6 times a week for 7 weeks. I have been up with Levi 4-5 out of the last 8 nights. Writing this I am tired and during the day I have my moments/hours but I am just powering on, sometimes I don’t know how or where my energy is coming from – how long does adrenaline last??? I do have people ask “How do you do it?” I have no idea, I look at people and sometimes wonder how they have time to cook dinner and take there kids to 5 different after school activities and volunteer and work and be organised and offer to help us out. That’s amazing to me. I don’t cook at the moment, I barely shop, we have no after school activities (even the boys swimming school closed down).  Half the time I have no idea what I am even doing (or writing, like right now). I try to do normal things or things that will be light entertainment but distracting. Just for at night when I have a little time but am too exhausting to do anything like face the messy kitchen. I do wonder what is going to give, I don’t think we could possibly fit anything else in. But hopefully Hannah does just squeeze in when she comes home before Ellie. I believe it will be then that I will truly know what being tired is, even beyond having aching eyeballs (I get those when the tiredness hits some afternoons).

Blessings and miracles (14/7/2016)

The last 50 or so days have been both the longest and fastest. I missed 5 days with my girls because of a cold – came back and Ellie was back on a ventilator and Hannah was ready to come home.

That day, the one Hannah came home. I was had just gotten Hannah dressed in her going home clothes, we were all packed. When an anesthetic registrar wanted to talk to me about Ellie’s eye surgery the next day. While I was standing there Ellie started crashing. This was not just a crash, the anesthetic registrar stood there not knowing what to do, the neonatal registrar who is always very hands on took a step back to let the fellow and consultant in. There were people everywhere, all around my baby as she went from pink to purple to white as I stood there and watched her oxygen saturation and heart rate plummet. I stood there and watched a nurse give my baby chest compressions, I watched Ellie as they tried to unsuccessfully intubate her. I stood there thinking my baby is going to die. And then they did intubate her and the nurse standing next to me pushed me forward to see that Ellie’s heart was beating in the 100s again, and to see she was getting pinker. After that I walked back to were I had left Hannah picked up her capsule – said I would go through her discharge tomorrow (and after being checked on by a number of nurses) walked out the doors with my other baby girl. I cried in the car on the way home, I checked on Hannah every time I stopped at a set of lights. I came home 2 hours later than I anticipated. Hannah was hungry the boys were excited and I spend the next few weeks hoping I didn’t see a purple baby whenever I looked into Hannah’s bassinet. Parents aren’t meant to see that! Babies aren’t meant to go through that! I was told later that a few hours after that crash Ellie had another tiny crash, but they pulled the curtains around her bed and asked all the other parents to leave – they didn’t know what to expect. That was Tuesday – she didn’t have another crash until the Saturday that’s when we got told to come straight in because they couldn’t intubate Ellie. 15 minutes later we got a 2nd call saying she was intubated but keep coming in. We walked in to a baby on 100% oxygen and not saturating oxygen very well. 3 hours later, about 7pm, the nurse looking after her that night looked at Ellie’s blood test and then at me and said

‘You know these numbers are conducive with life don’t you? We will do everything we can, be if you are religious do you want us to call the chaplain? I won’t take a break tonight (on her 12 hour shift), if you see me walk away at all that’s means she is doing OK.’

They were short registrars and so a fellow was on that night. As soon as she walked on to the floor she got a chair and sat next to Ellie and watched her ventilator screen. She adjusted what she could, called the consultant and they decided to try one last thing – added another gas to Ellie’s oxygen. This beautiful fellow looked at us and said we are doing everything we can medically. ‘You are Catholic aren’t you, do you want to get her baptised- sometimes they need something more. sometimes it helps.’

Just before Ellie was baptised at 2am, under the watchful eye of the fellow, her nurse took a 25 minute break. She had turned a very small corner. They discovered Ellie had three major infections, adults have died from having just one of the infections Ellie had. It was in her blood and her already fragile lungs. Hannah had been home just under 4 days when we spent 3 nights in a room down the corridor from Ellie’s bed and then a further 4 nights a 5min walk from the hospital. Hannah ended up spending more of her first 2 weeks discharged in hospital and hotel rooms than she did at home.

Slowly Ellie improved, slowly she proved everyone wrong, again. Slowly she proved she was here to stay and fight. Slowly she showed everyone again that she wasn’t like the other babies, you never know what to expect with Ellie. The surgeons aren’t big fans of hers nor is the anesthetist that had to reintubate her while he was putting a line into her. She has however won the hearts of many nurses and some of the neonatal doctors. They talk to her and cheer her on and get excited for her. They cross their fingers and hope for the best when they try to take another step forward. A number of nurses visited her while I was there this week and just can’t believe it, especially the ones that nursed her while she was really sick – our little miracle. It has been tough the last two weeks, other families having been going through tough times and I look at Ellie and just feel overwhelmed with blessings and guilt, why is she here – we are so abundantly blessed to have her here with us.

This isn’t about us or how we are managing or coping or how strong we are. It’s nothing. My 2.3kg baby girl is fighting to breath and live, she desperately wants to be here – there is fight in her that I will never understand. It is not about me. We do only what we have to do to care for our family and everything else goes to Ellie, she has done all the hard work, she has fought and won. How could we do any less. Those days when it is just too much, those days you want to give up, the days you just don’t want to get up and leave the house again. The rainy days when you leave and everyone else is still in bed. The days you miss out on something because you are travelling for two hours to spend 4 sitting on a chair in a hospital. It would be so easy to give up. But how could we, how could anyone. She is my daughter and she has done more than any of us.

Two years ago I went to a Sisterhood Conference (Catholic women’s conference). The theme was Beloved, and they played this song I don’t know how many times and it stuck with me. The images it produced in my mind were so vivid, a hand reaching down and pulling me up.

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now
So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

I use to think of myself in this song and I think I still need too. However now I think of Ellie, the way she fights and breaks through. She depends on us and needs us. All of us. Yes Matt and I to be her parents. But all of you her community and support network, her cheer squad and prayer support.

Her fight won’t end when she comes home. Her lungs need to grow, the new healthy cells have to start out numbering the damaged ones. Our little Ellie will have to keep fighting and we need to be there to remind her she isn’t alone we are fighting with her and for her. It isn’t about us. She is our little bonus and what a miraculous blessing that bonus is. It is about Ellie and we will fight for her for as long as it takes. When we get tired we will rely on each other, our community and remember that we are never alone.

My normal (9/9/16)

My sitting with my girls looking at them in a hospital cot. I’m thinking to myself this is not normal, but it is my normal – it is their normal. But really it shouldn’t be anyone’s normal. Having a nearly 5 month old that has never been home, never been outside, never breathed on their own is our normal. And that’s ok. It’s ok to smile and say thank you when someone congratulates me on my newborn or nod and smile when they comment how new they are. That’s their normal their expectation and that’s ok.

I love that my baby is cared for by people that treat her like the special person she is.

We are where we are meant to be. Our normal is what we are meant to be doing. If it means we have four beautiful children at home on day I wouldn’t trade it for anything.

What do you so to a NICU Mum? (19/9/2016)

I have seen many, many Mums come and go. I have heard stories of people’s 10 days, 5 weeks, 4 months in NICU. Their struggles, there worries, their stress at taking their baby home. And I think to myself, stop comparing their journey had a big impact on them, it was a long tough road for them. But it can be hard. I have an ex 26 weeker who spent 12 weeks in the NICU and now barely gets a look in. She came home for 11 hours before going straight back to the NICU because her little sister was getting eye surgery. She spend er first 4 nights after discharge at home and then 7 nights in hospital accommodation and hotels. She had no real major setbacks and as long as I tell people she is only 3 months old you would never know what she had been through. I think of Hannah’s story as a minor blip. Yes she has scars on her legs as arms – she bears the marks of a preemie, but my warped perspective just lets me see a healthy baby who was in hospital, she was fine. I see parents coming in panicked and then theie baby leaves again in a matter of days or a week and I have to force myself to remember that that is a big deal for them. Those days have impacted them – I can’t brush it off as nothing just because of what I have experienced.

Ellie is the oldest baby in the unit. That means not one of the 43 others babies was alive the day Ellie was born, that means not one baby or parent is the same as the day she first found her spot in level 3. And then I think, but Ellie isn’t the longest to have ever stayed, some say the ‘record’ is around 230 days others say they remember feeding an 18 month old solids. We can’t predict how long our journey is going to be or how hard, we can’t compare our journeys our reactions to the same situations or how any of us will cope. Sometimes I’m not even sure how I cope.

Ellie has a poster on her wall at the moment and a few of the nurses have really liked it – often when I read it I interpret it differently or change some words to better suit my mood.

“Fate whispered to the warrior, You cannot withstand the storm. The warrior whispered back, I am the storm”.

Obviously I like to think Ellie is the storm and my gosh has she been a storm – scary, unpredictable, moments of the most incredible calm while crazy things are still going on in the background and then a gust of wind comes along and knocks you off your feet again. But who is fate? Is it the people that though she would never make it? Is it the people that come up to you and ask how do you do? Is it the people that ask you (when you are first discharged from hospital) how do you leave your babies? Is it the people who just don’t realise what they are saying and you just have to ignore them and their ignorance. Or is it me waking up in the morning and wondering how am I going to get out of bed and do this again. Is it Ellie’s crap lungs or the infections that ravaged her body in the past. It is the world forcing her to stand up and shout that it doesn’t matter I can beat this. But the powerful thing for me is that the warrior doesn’t shout. They whisper, that whisper is more powerful. I obviously read this quote a lot and think about this a lot and I’m a very visual person but try to stay with me. Imagine a fierce, angry enemy whisper to the smaller weaker warrior ” You cannot withstand the storm” and then for the warrior to stand to the full height which is actually just as big as the enemy and then with a smirk leaning in close to the enemies ear and whispering “I am the storm”. No emphasis, just four simple words that make the enemy shrink back. Whispering doesn’t require a physical strength, it requires an inner strength. Strength in be confident enough in yourself to almost mock your enemy and tell them their threats are in your control not theirs.

Sorry it’s late I’m tired. Not really sure where I was going with this tonight. I had been looking up ‘inspiration quotes’ in a hope to find one that would encourage other NICU Mums, that I could gift the the unit in honour of Ellie and her sister Hannah who had the easier journey. It got my mind running in circles. One thing though, never compare anyone’s journeys and if someone tells you about their journey please never say anything a long the lines of that’s nothing have you heard of Ellie. Every journey is significant, important and life changing to so many people. Good night.

Three months since the last post, where did that go? (12/5/16)

Christmas and birthdays are my favourite times of year. I love buying gifts and seeing people’s faces when they open them, I love catching up with family, going to carols, feeling the energy and goodness at Christmas Eve mass. Christmas is a magical time and always has been. It shouldn’t be a hassle or hard work or dreaded. For me it is a time to celebrate and rejoice in the amazing things that have happen in my life. Last year we were in the midst of praying our twins made it to 25 weeks gestation so they had a chance of survival and I was so grateful for whatever time I would have with them (obviously hoping it was longer rather than shorter) and I was grateful that I had two other kids that were healthy and flourishing and beautiful.

This year for the first time ever, the only person I am travelling to see is Ellie. It will be only the 6 of us. I couldn’t be more excited. Ellie being in hospital has given us the opportunity to be selfish and experience a Christmas we haven’t had the chance to experience before. Christmas is about the positive things – we are told the Hospital do a really great Christmas and we are feeling excited about experiencing it.

We are getting to a point in our journey were and a time of year were people are focused on themselves, as I would be in their shoes. We don’t mind – it’s just hard sometimes when people still expect you to be able to do everything and fit into their schedules and busy lives. It is easier for us to say no and not miss out but experience something different. Our kids won’t be waking up to presents on Christmas day, they will be waking up to a rush out the door to find their presents in their sisters hospital room. An exciting adventure they get to share with all their siblings.

I don’t know why I’m writing this and as usual I’m just babbling as I think. It’s just that Christmas seems to be catching up faster than I can run. But then I think to myself what is Christmas really about? Presents, Santa, lights, trees or spending time with people we weren’t sure would even be here. The greatest gift Matt, Nate, Levi or I could ever hope for. If the Wiggles visit that won’t hurt either. I hope your Christmas is full of love, joy, family and all the incredible things life give us that no amount of money could ever buy.

The ups and downs (1/2/17)

I woke up a defeatist and am settling down to rest a love filled, exhausted Mum (as it should be)

“Everything I am, everything I long to be

I lay it down at your feet.” – Matt Maher

Ellie has had the same playlist since about June last year, yet some songs still stand out more than others and not always the same one. I sat down with Hannah this afternoon and this Matt Maher song came on, I thought to myself this is what I should have done this morning. I didn’t. Yet, my day was filled with reminders that this is what was happening.

My prayer life is not what it use to be. I feel like I am currently in a very unique and blessed position. I feel embraced by God, but I don’t pray like I use to, I just rest in His presence and prayers seem to just happen – not always but if it is going to happen, that’s how it goes.

This morning I woke up after a very short, very broken sleep (even with nurse Georgia’s amazing help with Ellie). I believed I couldn’t keep doing what I have been doing and gave in to the exhaustion and my defeatist attitude.

My days often go by in a blur, I’m unsure of where the hours have gone and sometimes don’t remember what I have done with them. I knew it was going to be a busy day today (Day 322). I had prearranged to meet a friend, something I should have been excited about but could only think of the energy it would take. I was wrong it was beautiful and energising. She commented that I didn’t seem to have the same energy levels as usual, I answered with I’m tired (my go to answer when life is beating me down). But afterwards I felt better. As I saw the afternoon staff walk past my window I felt my spirits lift, familiar faces that I knew would help me just by being their amazing incredible selves. Well I hit the jackpot with Stacey, after an afternoon of having her on I had showered, gone outside for a walk, we bathed the girls and they both had had some sleep and weren’t too overtired, I was also able to say goodbye to one of my favourite doctors from the NICU Whois rotating on. My spirits and determination lifted. Good news and visitors also contributed to this determination to keep going. But for it all to happen on one day, the one day I was feeling like it was all too hard and I wanted to go and hide. It reminded me of the question I get asked almost daily, how do you do it – my standard answer, she is my daughter I don’t have a choice it’s what I have to do and want to do. This is the respond I should be giving:

“This is what the God I serve can do, this is His faithfulness, joy and strength at work, truly I trust Him” (Apadted from, Lindsey Dennis – vapourandmist.com) This is what grace feels like.

I’m still tired, however once again my head is held high, my eyes on the horizon and my mind is starting to once again adjust to the joys and challenges of being home, together.

We are all warriors if we choose to be

My beautiful Ellie ❤️

Gorgeous, energetic Hannah 💕