Zipper Club: Hearts and Minds

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*TRIGGER WARNING*

Contains references to birth trauma and our hospital stay.

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I want to cry but I can’t so I’m writing instead.

Actually, I want to sleep but my body clock has gone all crazy with the broken nights and although it’s 1am, I can’t.

Georgie is doing really well. That I can say with absolute delight and confidence. She is a joy, not only to us, but to everyone who meets her, even including the other members of the audience at the recent SSAFA concert where Joel was performing. When she smiles, her whole face lights up – which is pretty special when it’s directed at you.

Health-wise, apart from giving us the usual parenting scares like refusing to feed (that was fun!) and colds, she is doing incredibly well. Her first op was a great success and her heart is slowly healing itself. The hole between the bottom chambers of her heart appears to be closing all on its own (isn’t it incredible how God designed the human body?!) which means the surgery on the hole at the top of her heart isn’t such an emergency now and her doctor is even talking of potentially leaving it for a year or two. Obviously the bigger she is, the better for the op, so they would like to leave it as long as they can.

We’re now planning her dedication service which will be a proper celebration, I can assure you!

Georgie is doing really well.

I’m struggling.

In many ways, I have a miracle baby. My beautiful daughter was born in about a good a place as she could be while still having a serious heart problem. She is thriving and is not on any medication and even her check ups are once every two months, the doctors are so happy (as opposed to weekly like we were told to expect ).

I still have a sick baby though.

I still have memories of a pregnancy haunted by the knowledge I would go into hospital pregnant and potentially not come home with my baby. We trusted God through it but we also knew there was a strong possibility we wouldn’t like what He chose to do.

And to be honest, I don’t like what He chose to do.

I have lived through the hardest year of my life. I literally have walked through the valley of the shadow of death – and I’m afraid I did fear the evil that surrounded me. I trusted God was leading but I breathed in the sulphur and got scalded by the lava on either side of the path. I’m not sure why I’m even writing in the past tense because this is still all present for me.

I had a horrible labour and I laboured through it knowing that those could be the last hours I spent with my child. After she (awkward child!) shifted her position, I was taken into theatre and she was born with a forceps delivery. For about three seconds they laid her on me as they cut the cord (and I was too wired up to various drips to be able to touch her – and had a hospital gown on so couldn’t feel her) and then she was whisked away to the other side of the room. I can’t remember how I even found out she was a girl. My lasting memory of her is a group of people clustered around her at the other side of the room whilst I lay there completely helplessly as a stranger stitched me up and, crane my neck as I hard as I could, I could not see her. They brought her back to me for a brief minute so I could see her beautiful little face and then she was taken away to NICU and I to recovery.

I didn’t see her again for 8 hours.

Having your baby taken away is a pain I didn’t even know existed. You’ve spent 9 months nurturing this little one, you cannot have a closer bond, and suddenly it’s snapped and she’s gone and for all you know, you may never see her again except as a lifeless corpse. It’s a what if. It didn’t happen. But there are times my mind drags me back there and I feel the same helplessness and fear as I did then and have to hug my bubba to remind myself she did make it.

I remember begging a nurse to help me express because it was the only thing I could do for Georgie, my only connection with her, stuck in that merciless hospital bed. I urged Joel to go and see her, I begged my mother too – I wanted someone to be with my daughter even as I couldn’t be. I’m weeping now, remembering my desperation to see her, to check she was ok, and my frustration with my body that wouldn’t let me.

Joel could finally wheelchair me down to her ward. Urgh. I sometimes find myself being wheelchaired through those corridors even now in my head and the dread and anxiety haven’t lessened. I don’t remember much about first seeing Georgie. This horrible mental illness has stolen that away from me. Or the fact I was doped to my eyeballs. I don’t remember reaching out to touch her, I don’t remember what I felt. I cried, I know that. And I watched my little daughter in an incubator, surrounded by plastic and wires, and my heart ached and I wanted to just stuff her back inside me, drive home and pretend I could carry her inside for the rest of my life.

I hated the hospital. I hated the fact I was separate from my baby and completely useless and helpless. I hated the fact I was in so much pain and exhaustion I couldn’t stay with her for more than an hour and she had to be left alone with her nurse (and they were all amazing).

I didn’t get to go with her in the ambulance as they hadn’t discharged me and once again my baby vanished.

The drive to Alder Hey was agonising, mentally, emotionally and physically. I’d got an infection in my stitches and a 4.5 mile drive took us over 30 minutes thanks to roadworks. I’d have run if I could to the ward.

One small memory that makes me smile in the next scene – we asked at the first desk as we entered the ward where Georgina was and was told she’d be down the other end. Off we trekked down the other end and halfway along we both saw a little baby lying in a heated cot. They were facing the other way so all we could see was this mass of hair and a cocooned little body. We both whispered we thought it was Georgie but the nurse with us seemed adamant she would be further down. Turns out it was Georgie and she was fast asleep, completely oblivious to the fact her daddy and I were going frantic trying to find her. We both felt rather pleased that we could identify her from the hair on the back of her head!

I cannot praise the staff at Alder Hey enough. We slowly began to feel like maybe Georgie was our baby and not the hospital’s. A baby we could hold when we wanted, not when a nurse informed us we could. She was our daughter, even if it was a very strange introduction.

I walked away from her each night trying not to cry and praying desperately that she would be alive the next morning. We waited on tenterhooks for nearly a week for her first op, never quite sure when it was going to happen. We watched other families screaming in agony as emergencies struck and sat praying desperately as medical staff rushed in to another cubical. I am still haunted with the thought and guilt that I got to bring my baby home – I know there will have been others who didn’t. Did the three in Georgie’s first room get home? Did the little one across the hallway who kept having emergencies make it? What about the parents we befriended whose little boy kept having to go back to ICU for another emergency operation? Survivor’s guilt runs deep in this.

The day of her operation was the longest of my life. We couldn’t feed her after a certain time. I sat there holding a screaming baby who wanted food, who I knew wanted food, and could do nothing. Her op kept getting pushed back and she kept getting more frantic. They brought in a little hospital gown for her and I lost it. Hospital gowns shouldn’t come in baby sizes. I couldn’t bring myself to put her in it. The walk down to theatre I still do in my sleep. My beautiful baby in her cot, the porters, her nurse for the day, and me gripping Joel’s hand tightly. No parent should have to see their child go under anaesthetic. They told us we could kiss her goodbye and leave and I couldn’t do it. I wasn’t even pretending not to be falling apart by this point. I walked out the room and left Joel to kiss our drugged baby. I remember Joel asking me how we could love someone we had only known for 9 days that much.

We then spent hours waiting to hear how she had done. Whether she had made it through the surgery. Whether we could begin our journey to going home. I asked Joel what we would do if she didn’t make it and he calmly told me we would breathe, go home and keep trusting God.

As you all know, she did make it through surgery and did so miraculously well. They hadn’t finished cleaning our old room on the ward before we were back!

Eventually we finally left and came home and I expected sheer relief and there was that to start with. Then Joel went back to work and it dawned on me that there was just me looking after a baby who had previously had an entire medical staff waiting on her! I turned hypervigilant. I couldn’t let her out of my sight for a second. I had to check on her multiple times a night, even though she was next to me in her crib. I walked around constantly scanning for dangers, trying to figure out how to deal with any potential hazards that may come. What would happen if I dropped her? How would I try and land so I could protect her? Could I remember my first aid, was it the same for a baby? Why hadn’t I picked up my phone so I could call an ambulance immediately? How would I phone an ambulance and let Joel know? Would it be quicker to drive? And then I’d arrive at her changing table and my concerns about dropping her would turn to concerns about her rolling off or me snapping a finger, or dropping something on her, or her turning too cold. It’s exhausting. It’s paralyzing.

Fear ate into me. I trusted God knew what He was doing – I just didn’t trust that I’d like it.

After a few weeks of this, my parents and Joel suggested I went to the doctor and I began the slow process of being diagnosed with PTSD.

Not only soldiers struggle from post traumatic stress disorder. Turns out mothers can get it too. I trust God but my mind is broken. When we found out Georgie’s heart was broken, it snapped something in me as well. There is grief and helplessness and trauma sliced deep into my brain. I can’t hear the words “broken heart” without holding my little girl closer and knowing that it’s literally true for her. I get flashbacks where I forget I’m here at home with my daughter and husband and I feel like a vacuum cleaner is sucking me back into the past where I will get spun in circles and smashed into little pieces and in that past the ending isn’t always as positive as it really is. My nightmares have eased a little with the help of medication as well. My memory is in pieces so don’t ask me to remember anything. I struggled to spell the word ‘reckon’ the other day…auto corrective text saved me! I am balancing a trust of God for the future with absolute terror that I’m going to lose Georgie or Joel – or both of them. I would happily stay locked away in our little house and try to ignore the outside world with all the things that could happen.

I still smile, I still delight in how utterly amazing Georgie is. I can stare at her for hours and love playing with her, especially as she has always been fascinated by the world she’s surrounded by. I still enjoy chocolate and sunsets and kisses but there’s a cloud I can’t shift. I’m working on it. I’m processing it with an incredible woman of God, I am on medication which has also chilled me a lot, and I’m on the list for counselling. But I think I have a long way to go on this journey so bear with me. And bear with Joel has he is once again taking the brunt of my illnesses whilst also processing his own trauma. I tell him I’m sure he could have found an easier wife to do life with!

God is good.

This world is messed up.

I trust.

But I fear.

Faith is holding on to the first – God is good – when you’re feeling the hammering of the second – the world is messed up. Faith is trusting even as fear tries to strangle you.

I want to be better and I will be one day.

I’m not going to stay stuck here. I don’t want that for this family.

But it’s going to take time.

I need to see what happened through Heavenly lenses, not my own.

I am still hurting now and wounds take time to turn into scars – I can testify to that. I have watched the massive wound on my daughter’s back, the one signifying the surgery that saved her life, turn from a big weeping mess to a purple and red line. It’s still not fully healed and we wouldn’t expect it to be after only four months. So why do I expect my mind to be healed so quickly? I need to work through things and let go of the fear. Please, pray for us as we walk this. The pregnancy was tough, the hospital stay at times nearly unbearable, and life now is wearing at times. Georgina needs a mami who isn’t bound by the chains of a past she had no control over and that release is what I am praying for.

God is good.

He is our Sustainer, an ever-present help in times of trouble.

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Georgie’s Army

One day, I am going to be able to pull out a book and hand it to my beloved daughter and show her the prayers of a worldwide army of warriors who came behind her and raised her towards Heaven, pleading on her behalf. I will show her names of people her mama didn’t know existed before she was born. She’ll see places represented that we’ll have to go and get an atlas to figure out where they are. There will be names of people she hugs hello to weekly, and family, both officially and unofficially related. We’ll read names together of faceless people we’ll neither of us meet on Planet Earth but will bump into in Heaven. To everyone who has, is and will pray for our plucky Georgina – thank you! There is absolutely no doubt at all in our minds that your prayers have carried us and our daughter through the hardest days we have ever yet had to encounter.

One day my beautiful girl is probably going to ask me why a Good God didn’t heal her and I am going to have to hug her tight and tell her I don’t know. I will tell her of the diagnosis that struck fear into her daddy’s and my heart that we may not bring her home from hospital or even meet her alive. That every single day we have with her, every single hug, every single strop, every single dirty nappy, was something we weren’t sure we’d get to experience and how Heaven rang with loud praises when we were able to tell her army that she was born with a healthy weight (she’ll probably get cross when I coo over how chunky she was) and whilst her heart was still broken, it could be mended by a team of incredibly talented people. I won’t lie to her and pretend I understand why God didn’t keep miraculously healing her and it may be I never find out and that is something He is keeping for her. (I have to remind myself that He has a story for her and she needs to find it out for herself.) But I can tell her how many people danced alongside her daddy and I when we heard they could fix her heart, when she kept gaining weight, when we were able to share photos of her happily sleeping in her incubator without needing help to breathe oxygen. How her birth and finding out how well she was doing had a stream of people worldwide celebrating and praising God. I will tell her of people whose faith was strengthened in seeing God working in her life, of the atmosphere of praise and thanksgiving that surrounded the first week of her life.

To Georgie’s Army, we are blown away by your love and faithfulness for our daughter and ourselves. Never before have I felt the Church knitted together so strongly as family. I cannot wait to meet each and every one of you in Heaven and hug you and thank you.

I don’t think that life with Georgie will ever be an easy faith walk. There are good things I can see now that have come from this but it is still not a “good” situation. I love my daughter and it eats me up that she needs more surgeries to keep her alive. I wish I could fix her heart, I wish I could take her future pain on myself, I wish I wasn’t faced constantly with wounds and appointments reminding me her heart is still very broken. I think Georgie will continue to inspire and challenge the church and I can only pray as her mother that she will be given the faith and grace she needs.

We love you, faithful members of Georgie’s Army. If you ever feel helpless and like “all you can do is pray” – remember that our little girl is with us because of prayer. Remember that she was born in such a good place because of people praying for her. There is no “just prayer” on this planet. Satan got punched, kicked and beaten to the curb as God took your prayers and turned what Satan had fully intended for evil into good. I pray you will be encouraged in realising the power of His army uniting on their knees. I am reminded of a song line that says: I can stand tall, on my knees.

We do have one more request of you all: so that Georgie, as well as ourselves, can look back and be comforted and awed by the knowledge of how the Church family united in praying for her, we wondered if people would be willing to send their name (just a first name is fine) and town/country to this email address: gurdygroan@gmail.com and we’ll include them in a book with the prayers and messages people have sent.

I’ll end with two simple words: thank you.

Becky

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We’re all settling well into home life and are being spoilt rotten with meals, gifts and love being showered on us. It is so nice being home as a family of three and we are even coping without our team of nurses!

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The Zipper Club

Sheer excitement.

Panic.

Fear.

Delight.

“Are we going to be good parents????” asked about 1 million times. A day.

Finding out you’re expecting your first child is incredible. Finding out that your first child is going to have to be a little warrior is a little less normal. Finding out that your child will be joining ‘The Zipper Club’* is petrifying.

I don’t know how much I’ll be on here over the next few months. It may be I find release in writing about it, in seeing how God is still weaving His masterpiece as I watch in confusion. It may be that writing something down is too much. I don’t know so I just thought I should warn you.

I have already written a few pieces but they’re raw, very raw, and I’m not sure how much honesty the internet needs about this. I am learning faith and pain can walk hand in hand. I’m learning it’s possible to think you’re doing ok, you really are, only for a baby grow to cause absolute sob fest. I’m learning all the lessons I thought I’d learnt about trust through the CFS were the warm up for this and I don’t feel ready. I’ve learnt you can feel peace and I’ve learnt you can choose to step outside that peace. I’ve learnt there are a lot of hurting people in this broken world and sometimes having everything ‘not ok’ in our lives gives us a doorway into theirs. I’ve learnt a mother’s love for her unborn baby is fierce. I’ve learnt the love a daddy has for his little baby can cause this mummy to tear up.

I’ve learnt.

I’m learning.

I will learn.

How much of that is internet-worthy, I don’t know. Guess we’ll find out!!

*An exclusive group of people who have gone through open heart surgery leaving them with a scar like a zipper on their chest. (Source: Urban Dictionary)