Milo's cardiac journey * (sensitive post)

OK, this post is long, it's very long, but I've dotted it with lots of pictures to make it a bit easier to digest.  The post has been a massive hurdle for me as I'd love to share more about Milo's day to day stuff on the blog but I feel like until I've got this published then I can't.  Part of it is selfish therapy for my self and the other part of it is me rejoicing in how amazing my little boy is!

Whilst Milo's cardiac journey was traumatic, distressing and not straight forward it did have a happy ending.  I'd love to hear how your journey's are going too?

Milo had an antenatal diagnosis of a complete AVSD. At that time it wasn’t the devastating blow that most people experience as the prediction before this point had been that they had not expected him to survive the pregnancy due to a cystic hygroma and that he more than likely had the much more devastating condition hypolastic left heart syndrome.  Because of this I think I had underestimated the impact that the heart condition would have both on Milo and us as a family.

He was induced and born weighing 2.84kg at 37 weeks without any serious concerns.  I had already written in my birth preferences that I did not want him to be separated from me and taken to the neonatal unit as a precaution but rather only if there were clinical problems identified. 

Milo did begin to struggle with feeding (Milo’s feeding story to follow!) and jaundice and after a couple of weeks was readmitted with congestive heart failure.  We were surprised that he was struggling so early with heart failure but were told that it was because as well as having a large complete AVSD he also had a large PDA which hadn’t closed after birth in time this led on to pulmonary hypertension  from too much blood being pumped to his lungs and flooding them.

Over the next month whilst in the hospital Milo was classed as failure to thrive as we struggled to get the right balance of diuretics and calories needed in order to help Milo to gain weight whilst preventing his lungs from being overloaded with fluid. He worked really hard with his breathing which was very fast and with chest recession and sweated an awful lot with feeding. 

 By this point he was fully naso gastric tube fed a high calorie combination of fortified expressed breast milk and high energy formula although I also gave him daily practice at sucking at the breast for 1 minute to help to maintain a sucking reflex. He was discussed as a potential candidate for pulmonary artery banding (where they put a band on the pulmonary artery to reduce the blood flow to the lungs to allow the child time to grow).  However despite me  pestering , by the time they’d got round to discussing his case Milo was 5 weeks old and had finally started to gain weight weighing 2.9kg so it was decided to hold out for a full repair which we were told could happen when Milo reached 5kg.  Milo was discharged from hospital on a very complicated feeding regime but it wasn't to last.

Milo's daily breakfast

Within a few weeks he was readmitted struggling with his heart failure and a nasty cold virus called RSV which causes bronchiolitis in vulnerable babies.  He was very poorly, ghostly white from exhaustion and needed high dependency care with high flow air/oxygen mix (optiflow) and further restricted fluids continuously fed through a feed pump. 

Poorly boy

It was a very frustrating time seeing many other babies come in with similar symptoms only to recover within 3-5 days.  Milo took 4 weeks to recover and even then he was sent home on oxygen and no longer able to tolerate bolus feeds due to him sweating too much and working too hard with his breathing so instead needed a feed pump continuously.

Changing his face tapes has always been a trauma!

On the mend and first proper smiles for mama

He was only home for a few days over Christmas which was really quite stressful being a 24hr carer for a very poorly baby and during that time I was up and down to the hospital like a yo yo with various concerns.  His respiration rate was 80 and he was really struggling.

Very pale baby celebrating Christmas

  Then he was readmitted with a very high fever which turned out to be influenza B.  His oxygen saturations were dropping into the 40’s when he managed to sleep despite 6 litres of 100% oxygen via optiflow so he was transferred to the children’s intensive care unit. It was a very scary time.

Bruised head from repeated attempts at trying to get a line in somewhere, a central line was inserted in the end which was much easier to take blood gases from.

  The cardiologists liaised with the doctors caring for him and they thought that he was probably having large shunts of blood going through the holes in his heart.  It was decided that as soon as he had recovered from influenza that he needed his cardiac surgery as his heart simply wasn’t coping. So after a few weeks of another very slow recovery we eventually managed to get him off the optiflow and said good bye to all the lovely nurse friends that had felt more like Milo’s family since he’d been born and got into the ambulance for his transfer to Alder Hey Children’s hospital.

Milo’s Sat’s were still dipping into the 60’s as he slept at this point and we had only managed to achieve a weight of 4.6kgs at 4 months old. 

It’s worth noting that over the time of Milo’s heart failure we had had 4 different oppinions from various experts over what were an acceptable level of oxygen saturations for a baby with a complete AVSD and PDA.  2 different  cardiologists told us 89% and above,  a respiratory expert told us that he should have normal sats (above 94%!).  In the end his cardiologist who we’d transferred to told us that he would be happy with sats of 80%!  Although Milo was still needing oxygen whilst he slept to even achieve this.  I’d be curious to know what other parents experience of this piece of advice have been.

Arriving at Alder Hey was a very scary experience for us.  We had been used to our own private new on-suite room at our local hospital where we knew every lovely nurse by name.   Although here he was to stay on HDU and I was told that I could not stay with him.  Thankfully a kind nurse allowed me to stay in a bed around the corner from him although I didn’t get much sleep as I kept checking that he was ok.

I remember feeling that the build-up to his operation was so intensely awful with me struggling to stay strong for my little boy having to go through so many failed attempts at blood tests and agonising echo’s.  I also wasn’t prepared for the bluntness of the consent form and struggled to listen and stay focused after they stated the 10% risk of mortality figure due to his oxygen dependency, pulmonary hypertension and size.  We were aware that the reason that they’d held off for so long in performing his surgery whilst he struggled with heart failure was because of the difficulties in making the new valves that are needed when an AVSD is complete.  The surgeon informed us that the difference of an extra month can mean the difference between the valves being as thin as paper, clear and soft as butter to something much tougher that could hold the stitches in place.  Although they agreed that Milo could not wait any longer for his surgery. 

We were told that he would probably have his operation the next day but I didn’t like the uncertainty and told them that I’d rather he wait an extra day than compete with 2 other patients and for them all to be starved when only 2 could go to theatre.  My concerns were brushed over though as they needed to get as many children through surgery as possible and if there was a chance of getting 3 done then they’d rather starve 3.  

The next morning we were up early to give Milo his last bit of milk and wipe him down and gown him up.  I took lots of photos of him smiling and playing with daddy in the dim light of the ward frightened that they may be the last ones that I’d get of him.  After many hours of waiting for news we overheard the doctors casually mention to a nurse that Milo wasn’t for theatre today.  I felt so cross as I’d predicted that this would happen and although Milo didn’t necessarily feel hunger due to being continuously tube fed for so long I wanted to make the experience a smoother ride for all of us as it was already so stressful.  The day didn’t get better as Milo was accidentally given aspirin off another child’s drug chart despite my husband’s protests that he wasn't on aspirin.  The nurse admitted to us later that she had made a mistake and was deeply sorry.  Although disturbed by this error the nurse had shown genuine empathy that day and we wanted to move on.  Surgery was scheduled for the next day and the surgeon was happy to still proceed despite the error.

Sitting down to go through the detailed consent form with his surgeon I remember staring at his long slender fingers and neatly trimmed nails praying that these would be the hands that in his words would ‘prolong life’
.

The following morning we once again went through the ritual of the dozens of ‘last’ photos and cuddles with our heart in our throats.

Milo was 1^st on the list and so at 8.45 am I carried him into the anaesthetic room and lay him down on the heated squishy mat on the bed, gently kissing his head as he breathed in and licked the gas mask.  Walking back along the corridor to his dad I cuddled Milo’s puppy before hugging Adam.  We went back to our room and did our best to keep busy, do washing, tidy up.  All the time thinking of what was possibly happening to my little boy at that moment.  We’d been asked not to leave the hospital grounds in case they needed to speak to us urgently or ask for us to consent to further  urgent treatment. 

I tried to relax and take a bath, but as soon as I got in the bath my phone rang from an unkown caller. ‘It’s one of the nurses on the ward we’re just wondering if you could come over to speak to the consultant as he needs consent’.  I almost had a heart attack as I was stuttering to ask her what for , splashing water everywhere as I dived out of the bath.  She then explained that it was consent for his gastrostomy tube that he would have fitted the next day.  I was so cross that they’d rang about that at this time yet so relieved that it was nothing serious.

After consenting for the gastrostomy tube I was impatient and couldn't bear to wait in the Ronald Macdonald guest house.  So instead we spent the last couple of hours of Milo’s op in the intensive care unit waiting room.  All I needed to know at that time was that he’d made it out of theatre ok. I couldn’t bear the thought of him being in ICU without me knowing.  It was therapeutic to start to speak to other parents about their experiences whilst I was waiting.  The last hour dragged and I spent it mainly in the corridor outside of the ICU doors, desperate to get a glimpse of his cot and entourage being wheeled behind the door.

 The relief when I saw him was incredible and after 25 minutes of badgering staff they finally allowed us in to sit at his bedside.  They were great at explaining what everything meant, every tube, wire, mark on him.  Within minutes though Milo was writhing and wriggling all over the bed, kicking his legs out.  I was anxious that this wasn’t supposed to be how he should be, minutes after surgery.  Then his surgeon came and discussed with the nurses that he wanted Milo ‘flat’ for the next 24 hours to allow his heart chance to rest.  He explained that the operation had been complicated and tricky but that he was happy with the repair. He said that his heart was ‘massive’ and his pulmonary hypertension very high. 

We felt unbelievably relieved to be the other side of his surgery although we were anxious that the next 48 hours at least would be critical. 

Well Milo needed longer to recover than 24hours and for the next few days we battled with Milo’s bleeding requiring transfusions and extra stitches, fast heart rate and high temperature as well as sedation, blood pressure and swelling issues.  They dressed him in a cooling jacket in an attempt to bring his temperature down and encourage more fluid back into his circulation and prevent his blood pressure from dropping so dangerously low.

 At 1 point I as I was discussing with the doctors that I was concerned that he might be feeling pain his heart started losing all out put function.  Within seconds a curtain had been dragged across as staff rushed to his bedside and someone carried the emergency drug box.  Thankfully with early intervention and an extra shot of adrenaline they managed to stabilise his heart again although they were still concerned about how much fluid he had collected as he was grossly swollen. 

Every time that I would leave him to get a drink or make a call I felt sick to my stomach not knowing what the new drama would be that I would return to.  I hated leaving him at night and would spend time ensuring that I got to know his new night nurse before I entrusted him in her care.  I always wanted to show them a photo of who the real Milo was as I was aware that he just looked  like a body to them and I wanted them to feel what a special little boy he was that they were caring for. When I got up at 2 am every morning I would ring to ask how he was, but luckily most of his dramas seemed to unfold during the day.  Returning at around 7am each morning meant that I’d get to hear the full hand over of care to his new nurse ensuring that I regained a tiny bit of control over a situation in which I felt helpless. 

Milo was really really swollen his eye lids didn’t close and the membrane on his eye was also swollen and bloodied. 4 days had passed since his surgery and he’d remained ventilated the whole time as he’d been so unstable.  The fluid had taken advantage of the empty pocket of skin around his neck where he'd had a cystic hygroma when I was pregnant, he was so swollen that his head molded to a wedge shape and he had to be rotated regularly to help to shift the fluid around his head.   But after 5 days there was talk that we were going to try to extubate him and get him breathing by himself.
  

The extubation went well, he went straight on to optiflow and we were ecstatic to have our Milo back.  All be it a rather swollen looking one, his big sister even managed to get a few smiles out of him.

.His dad left the hospital as he had to return to work the next day.  From this point on I was on my own. 

The next morning though Milo wasn’t happy, I didn’t feel as though his pain relief had been kept on top of as he’d just had paracetamol, the ICU was shut down and I was asked to leave.   An hour later I was urged to return before the other parents as the staff couldn’t seem to soothe Milo’s constant mews of discomfort.  His skin was mottled and his legs and arms turned a deep shade of purple.  A blood gas confirmed that he was struggling too much.  For half an hour I held his tiny hand as they tried to help him using a mask and positive airways pressure (CPAP) but his blood gas was still awful so they decided to reintubate him and I was forced to leave his side for the procedure once again. 

His tummy looked a bit swollen and I wondered if he’d had tummy ache and if we’d pushed him too far with the bolus feeds too soon.

On returning the echo showed that his valves had started to leak too much but the doctors thought that if they gave him a bit more time to lose some of the fluid that he’d been storing then his heart wouldn’t have to work as hard.  Then his stomach started to swell more and more and after a couple of days it was huge and shiny and there was a dark patch on the surface where the tissue had begun to die.

  His liver was also clearly visible below the surface of his skin, floating and massive, a clear sign of severe heart failure.   I broke down at this stage fearful that it was obvious to everyone else that he was dying and they didn’t want to discuss it.  A quote from the Heart Line children book stuck in my mind which said ‘Although parents may suspect that their child is dying, they may be afraid to ask and have their fears confirmed.  Hospital staff tend to focus on the positive and may avoid voicing concerns that a child is deteriorating’.  The staff tried to reassure me that they were doing everything that they could for Milo.  It was thought that Milo had necrotising  enterocolitis, a very serious gut infection, so we rested his gut from feeds and put him on TPN  (nutrition through the vein) and also removed his groin arterial line in an attempt to improve his circulation to his tummy and legs.  Green faeces started to emerge from his NG tube and my baby felt no longer recognisable.  How could we come back from this point?

 I was exhausted from the constant worry and  the fact that I felt that I had to be on the ball all of the time as I was the only person who had had full continuity with Milo throughout all of his difficulties. But again he started to improve, his fluid decreased and after another few days they felt he was ready for extubation.

They weaned his sedation so that I had ‘my Milo’ back with me but he was panicking that he had tubes stuck in him everywhere.  At the time one of the lovely nurses from our local hospital had been so kind to come and visit Milo to see how he was doing, everyone there was also worried about him.  He started to work harder with his breathing and ‘fight’ the vent.  The doctors wanted to give him another hour or so before removing the tube to see how he did.  But stuck in this limbo was like torture for him and soon his arms and legs were cycling wildly whilst his eyes were wide and staring intently at me in panic whilst I struggled to hold his hands to calm him down.  Then I heard the bubbling and saw that his breathing tube (ET tube) was full with blood.  They suctioned him but it kept coming’ more and more.  They quickly sedated and paralysed him again to stop his gag reflex from all of the blood and make him more comfortable.  I grasped Milo's visiting nurses hand as we watched them work on trying to stabilize him. A massive pulmonary haemorrhage was confirmed via X ray, as the image showed his lungs were completely white and filled with blood.  He had been drowning and I’d been pinning him down.  I still feel traumatised by this event  today.  He was fully sedated again and I was relieved that he was getting some relief from this torture.  They had to turn up the ventilation to its maximum to try and stem the bleeding and he was very close to needing oscillation (higher frequency ventilation for difficult to ventilate patients).  He was given blood transfusions, vitamin k and fresh frozen plasma, all in an attempt to stem the bleeding.  I remember googling what the haemorrhage meant only to see my screen filled with the word fatal, I knew it was serious.  I rang my husband and asked him to come be by my side as I didn’t know what would happen.

The next morning the consultants broke it to me that Milo was very poorly.  That they suspected that he’d got endocarditis.  Previous tests that I had not been made aware of were showing that his lungs were positive for pseudomonas and ecoli and that they didn't think that they would be able to get him off the ventilator with such bad regurgitation of his heart valves.  Furthermore, that if he managed to recover from this infection that the only option would be to take him back for more open heart surgery and attempt to repair his valves.  Only he was so small that they didn't know how they would be able to repair the valves, as he suspected that  the sutures had torn through his valve tissue which is as thin as paper but clear.  He was too small for transplants or mechanical valves too.  I hit rock bottom that day, I started going through the grieving process sobbing and wailing, furious at staff for missing things or not keeping me informed before this point about the possibility of infection.  Denial that this couldn't possibly be happening to me, bargaining that they must of missed something, that they had to do something.  Until this point I’d asked for visitors not to come to ICU but to wait until he made it to the ward but I sent the text out asking them to visit him and telling them that the outlook wasn’t optimistic. The unit was shut down as a child needed an emergency operation in ICU but I was sobbing so much that they let me stay with my precious boy, stroking his head and singing him songs. 

At my lowest point that day (and I’m really opening my heart up now) I was having the daily battle that Milo’s sedation wasn’t enough, that he was distressed and in hysterics I thought that I wanted someone to end it for both of us now. I thought that it was utter torture for him and torturous for me to have to stand by and watch my baby suffer for so long.  I even questioned whether I’d done the right thing in not terminating him and bringing him into a life of pain and suffering.  In retrospect now I think that these thoughts were a reflection of how traumatic I found the experience.  I know that the experience has had absolutely no lasting effect on my amazing happy boy, on the contrary it has given him the gift of life.   In writing these thoughts down now I'm doing so not to wallow in self pity but to process and help myself overcome the  lasting emotional distress of the situation whilst sharing with parents that these feelings of despair are normal in this sort of situation

.

Sitting in cubicle 2 and watching the 10^th child come and go back to the ward following their open heart surgery was also equally hard.  I sobbed when I expressed him milk wondering why I was doing it and what I’d do if I lost him.  I went back to ‘Mac house’  that night and breathed in his baby grow that he’d worn before he’d gone to theatre, too scared to wash away his smell.  The next morning I found myself saying ‘if’ he survived to a member of staff and then I realised that I couldn't function like this.  I decided that this was too unbearable and that I had to stay strong and be positive for Milo, to help both of us.  I decided to focus all of my energy on ensuring that he had adequate sedation and pain relief at all times (we could deal with withdrawal at a later stage) and that I was fully up to date with all of his test results.  I had to help Milo and he HAD to get through this.

So they pumped him with antibiotics in a desperate attempt to save him whilst they rested him.   I remember looking at his terribly pale and bloated pin cushion of a body struggling to even remember that it belonged to ‘my Milo’ . Then they were having issues with his blood pressure again, and his raised temperature.  At this time,  people all over the world were supporting us and thinking and praying for Milo.  We were inundated with get well soon messages and messages of support, it was so lovely and really helped to keep my spirits up. 

ry.

After many days and a false hope of it happening on the Monday they finally decided that Milo was as strong as he was ever going to be to return to theatre for further open heart surgery on the Thursday.  His heart was having strange arrhythmias called ‘bi-geminy’ and SVT  and we were told that we should expect Milo to be very poorly if he made it through his operation.  We were informed that the risk of fatality from this 2nd operation was double that of the first operation and that it would take longer.  He would more than likely need Ecmo (a form of long term bypass) to give his heart chance to rest and recover following surgery.  They  also arranged for lots of extra skilled members of the surgical theatre team to be present during his surgery in case of complications.

On the day of his surgery we got hand and foot prints from our beautiful baby and kissed him goodbye once again. Then we headed back to our room in Mac house where we tried but failed to think about anything but his surgery.  An amazing parcel of gifts had arrived on ICU just minutes before he’d gone to theatre.  It was from the lovely members of The Future of Downs forum who I’d had fantastic support from and it was an really uplifting gift which arrived just at the right time.   Then, after less time than expected, we got the phone call from Milo’s lovely nurse Amanda to say that he’d made it through surgery and was back on ICU.  We couldn't believe it and practically ran across the road to see him.  He was looking good and Amanda was also amazed that he didn't have any complications at that time.

The surgeon came to explain what he’d found and said that Milo’s heart was mushy inside as though he’d had early stages of endocarditis.  He said that his valve looked as though it had exploded from underneath although the original sutures were still in place.  He had managed to patch his valve up with a piece of bovine pericardium and whilst the repair wasn't perfect it was working and Milo had tolerated the operation well.  They were much more cautious with Milo’s recovery after this 2^nd operation, but he surprised everyone and  did really well.  They spent longer ensuring that his swelling significantly reduced.  3 days later they were going to attempt extubation when they realised he wasn’t tolerating it. Unfortunately he had to have another chest drain in which revealed a chylothorax (leakage of lymphatic fluid into the pleural cavity).   The following day he was ready for extubation and although I had a moment of tearful panic remembering the previous attempts I was relieved that it all went smoothly.  I finally got my first tentative cuddle in 3 weeks, oh how amazingly fulfilling that felt.  Finally my 3 week bedside vigil on ICU came to an end as we headed for the ward.

The next day he was back on the ward where he spent another long 3 weeks.  At first it was hard to adjust to the fact that he didn’t have a 1-1 nurse but as he got better and was moved off of the HDU bay we were given a side room and I was finally able to stay overnight with my baby and relax a little in each other’s company.  We tried for a week getting Milo’s chylothorax leakage to reduce without altering his diet (breast milk, but now not fortified) but after 7 days the leakage was still around 50mls per day and so the team decided it was best that we try to swap Milo’s milk to Monogen.  Well that didn’t go down well at all.  Milo persistently vomited, had green thick mucousy stools and became dehydrated and tachycardic. Enough was enough so we put him back on to breast milk and he got better, but the chyle took another 10 days to reduce back down to 40 mls per day before they decided that they could remove the drain. I was pleased that the hospital had worked flexibly with me over the chylothorax and changing of his diet.  In most hospitals it would be unheard of for children not to be changed to Monogen milk straight away, despite there being no evidence to support this intervention.  Within 24 hours of them removing his drain we were finally home after 6 weeks in Alder Hey and many months being in hospital, it was like bringing my new baby home from the hospital all over again.

Milo was kept on diuretics for a few weeks and has been on long term lisinopril but is doing well although we never stop worrying about him and his heart. We've been told that there is a 30% chance that he'll need his valves replacing as he grows (although 1 cardiologist told us that he would certainly need  them replacing before he's 5).  We're always on the look out for symptoms of heart failure returning  with him.  He’s continued to struggle a little with his respiratory issues and needed oxygen at home for a while but this seems better during the summer so we’re keeping our fingers crossed for a better winter too!

I suppose I wanted to share Milo’s cardiac journey as it is a testament to everything that he has overcome.  He truly is a little fighter.  I also want to give thanks to the amazing cardiac surgeons and their teams without them many lives would be lost .

We’re planning on a big 1^st Birthday party for Milo where we hope to raise funds for the hospitals where Milo was cared for.  Although it will be an emotional day we can’t wait to celebrate it!

Reflecting on Milo’s pregnancy part 1

I’ve decided to write a few posts to Milo. I think that the experience of reflecting on his history will feel easier if I can explain it in the way that I felt towards him at that time.  As well as giving other parents in a similar situation hope I think that this blog will also help me to deal with the trauma of my pregnancy by documenting Milo's massive achievements. 

You were a very wanted baby. From the minute I birthed your sister I knew that the experience had been so profound, so earth trembling momentous that we had to do it again.  Yet in treasuring yours and your sisters sparkling presence I felt no sense of urgency to rush into allowing you into this world.  Instead I savoured every moment with your sister and nurtured her in a way that I knew she would enjoy our magical bond yet mature and long for a sibling of her own to nurture in a way that meant that she would be old enough to appreciate the whole magical experience of a new sibling without forcing her to mature quicker than her years. 

  As her 3^rd birthday quickly approached I felt the familiar pang of desire for a new baby, for you.  It was another rough winter for our family as winter virus’s left me feeling depleted of energy, but on the 3^rd month of longing (and on the verge of setting my hopes aside for a few months), a negative test that I’d discarded in the bin called me back to re-examine its pastel lines, and there you were!   On a high I started a pregnancy diary, and a series of bump progression shots to follow.  Your dad bought me a beautiful pregnancy journal full of crisp sheets longing to be filled with your amazing journey.  I was desperate to document and savour every inch of your journey and appreciate all of the details along the way.  

You quickly swelled my belly but I wanted to relish in our secret bond a little longer knowing that I was carrying a shining treasure inside whilst others knew little of this wonder, it was our deal and our moment to fully enjoy.  Gradually it became more difficult to hide and I never wanted to deny your existence and so by 10 weeks your family were overjoyed at your expected arrival.  At 10 days and 4 weeks I was so sure of your humming presence inside of me that I dared to get out my trusty sonicaid and there you were once again, strong and clear.  My morning sickness was worse whilst carrying you, and there were days where I would feel just green and have no energy, at least another good sign of a healthy pregnancy I thought.  And then I felt you move, barely 11 weeks but you were so clear!  Those spaghetti wriggles in my tummy as I gazed out of our dining room window, another sign that you were with me.

And so at 12 weeks whilst at work and in between counselling other women over their screening options and results I nipped in for our scan to confirm that you were there and well.  The atmosphere with chirpy as she double checked with me and my husband that we were happy to decline the nuchal translucency test, my husband pondered over what she was asking but I quickly replied to him that it was the screening for down syndrome and as this would make no difference to us then there would be no point in taking the test.  The familiar sonographer was silent as she worked. Then with a fixed glassy gaze she turned to me and said ‘Laura I'm really sorry to have to say this to you but there is a problem with your baby, it’s got a cystic hygroma’.In that moment my world shattered as my brain reeled through the images of my training desperately trying to latch some meaning to the words that were uttered.  Then as she spun the screen it became much clearer.  You had a huge bubble of fluid down your spine, a gross abnormality by any standards, yet you were still my beautiful baby. 

We travelled up to the city general hospital where I met up with our lovely consultant, who’d taken the time to come down and see us and explain things.  Still feeling optimistic that whatever this problem was you’d overcome it , the consultant very quickly shattered this optimism with his ‘umms’ and silence and finally by the devastating statement that he was giving you less than a 10 % chance of surviving the pregnancy.  I was offered a diagnostic CVS the following week, an amnio in 3 weeks or just to ‘await events’ various different syndromes were spoken of, the list seemed scary yet ‘downs’ seemed familiar.  I wanted out of that building intact and for my dreams not to be shattered, I didn’t want any testing as I wanted to give my baby chance to heal yet the finality of the consultants tone spoke volumes.  We had to expect that the worse was going to happen and could happen at any time.  Your skin was already very oedematous and it was only a matter of time before the fluid would start to collect in and around your vital organs.  I agreed to be seen again at 15 weeks if I had not miscarried in the meantime.

We left in a daze, with the our optimism stamped firmly out.  Me and your dad went to a veggie café  and ordered breakfast together but I found it too difficult to swallow.  We didn't know what to say to each other.  I felt gut wrenchingly guilty for causing you to become poorly.  Was it the migraine tablet I’d taken, the mould in our bathroom, the bumpy ride that I’d given you when I was sledging at 5 weeks pregnant or the sneaky drippy egg that I’d consumed whatever it was I’d obviously been far too complacent this  time round and not careful enough of my precious cargo.  The consultant had tried to reassure me that it was nothing that I had done that had caused you to become ill but inside I knew he must be wrong.  He said that in these circumstances women generally knew that the pregnancy didn't feel right, but you had felt so right, you DID feel so right, further proof of my complacency and lack of connection with reality.  The rug had been firmly swept from beneath my feet,  I was losing you, I’d lost all sense of myself and how could I go back to my career as a midwife, this too was lost.  I felt like I wasn't ‘allowed’ to be pregnant and avoided people to save them and myself from feeling awkward, not knowing what to say or how to explain.  I deleted the pregnancy app off my phone and gave away the beautiful pregnancy journal, feeling that the emotions of this experience were far too sensitive to be captured on those crisp sheets.  I desperately wanted to share how beautiful your picture was on your first scan photo as other excited parents did but I just felt sadness for my poor baby and robbed of even the privilege of this simple act.  So instead I treasured your image with me hoping that one day you’d defy the odds and I’d be able to share your first picture as testament to how far you’d come.

In the few weeks that followed, every day dragged, in limbo waiting for our next scan appointment to see you.  I dutifully packed my hospital bag to support me though the stay when the inevitable happened whilst desperately grappling out for anything to anchor my hope to.  The statistics were clear and success stores few and far between.  1 friend gave me some reiki and I felt your green/blue aura glow throughout it.  Another advised me to sleep with rose quartz next to my tummy which I did. A friend made a rose quartz pendant for me in the shape of a lily, the symbol for motherhood.  Rose quartz apparently helps to provide emotional balance and keep inner peace throughout pregnancy.  I also read ‘Spirit Babies’ whilst relaxing in our hammock and letting you absorb the warmth from the sun, trying to find some meaning for why you were so poorly. Whilst there was still a 10% chance of hope, I was going to do everything in my power to try to help you to get better,  I needed to feel like I was doing something.  I photocopied every page of my pregnancy notes knowing that when I lost you I would lose instant access to this connection to you too and must of re read the scan report 100’s of times.

We reached the 15 week point and I felt somehow reassured by your  increasing regular wriggles. Yet as I lay on the bed the consultant (shocked that you had made it this far) spoke of your progressing collection of fluid.  Your skin was terribly bloated, the septated cystic hygroma  was no better and the fluid was now around your lungs as well as having glandular lymphocysts.  The images on the screen did not look like a baby and the inevitable was now clear.  We asked if we could find out your gender and as he said you were a boy I turned to your dad as we gently squeezed each others hands with tears rolling down both of our cheeks.  It just seemed so unfair that we loved you  so much already how could you possibly leave us?  At this stage the consultant predicted that your left ventricle in your heart looked smaller but he still said that it was too early to say, he thought that you obviously had a major cardiac issue.

I knew that if we lost you that I would forever want to know why this had happened and what could I do to prevent it from happening again in the future. Yet I also knew that the only option at that stage would be for me to consent to my baby to have a most mortem, something that I knew I would never be able to do.  We were also told that the risk of the cystic hygroma massively outweighed the risks of an amniocentesis and so we made the joint decision to find out why you were so poorly.  It was not a nice procedure but we left feeling hopeful that the results would show no chromosomal abnormality as we were told that if there was an abnormality then your 10% chance would go down to 0%. Having found out that you were a boy ruled out turners syndrome and I felt strangely confident that having ruled turners out you would be ok.  This was the Tuesday and by the Friday I had still not heard any news although I was apprehensive about your dad going to work that day.

I got the phone call mid morning and my world fell apart once more,  It was sunny outside as I took the call away from your sisters ears.

You had down syndrome, you were not going to survive.

I was devastated, at 28 I knew it could happen to anyone but didn't think it would be me. I hysterically called your dad and asked him to meet me at the hospital, I was also furious and desperately wanted the consultant to change his mind and tell me that he’d got it wrong.  All I wanted was for you, and yet I was being told that where others would abort you I would be denied the chance to take you home.  Your condition was too severe the fetal medicine consultant had never known a baby to survive with such severe complications. I sobbed and sobbed, the world was so unfair.  Aborting you was not an option even with no chance of survival I wanted to let you decide when was the right time to leave, in your own time.  All I could do was to go home and as much as possible savour this precious time with you and prepare a meaningful way to say goodbye to you.  As a further  cruel twist I was told that if you proved to be a bit of a fighter then as your hydrops progressed it could also lead to a syndrome called mirroring hydrops where fluid would collect around my vital organs and be potentially life threatening.  If I had gone past 21 weeks then at this stage they would advise feticide (injection of potassium into your heart) to save my life.  This thought didn’t bare thinking about and so I put it to the back of my mind.

Coping day to day at this time was extremely difficult for me.  All I wanted was to know you were all right yet this wasn’t going to happen.  I broke down continually sobbing; unable to answer your 3 year old sisters request from downstairs to help her finish her jigsaw puzzle or to move from hiding behind the fridge door crying.  Your father, as well as the lovely screening midwife at the hospital were brilliant at times like these as I went in to discuss things with her again.  A hug when I felt so alone and vulnerable was really appreciated.

I'm so sad to say that I planned your funeral, your aunt agreed that it would be ok for us to bury your tiny body on her farm so that I could visit you somewhere special.  Your grandma knitted you some tiny booties and a hat and I remember sobbing for hours about needing a blanket for you.  These days were dark,  attempting to be  realistic and prepare my self when my hope had been stolen from me  was agony. Life was far easier clinging on to the 10% than now.

At 16 weeks and already feeling huge your sister and your cousin had both asked me if I was having a baby and stumbling I’d denied it.  Unsure of what to say or how to explain your presence or your predicted fate.  Knowing that this could not go on we told your sister of the presence of her little brother, a bitter sweet experience, but of course she already knew!  We decided not to tell her the certainty of your prognosis but instead told her that you were very poorly. Her shining optimism and unconditional love for you was heart breaking yet somehow therapeutic to see.

I continued the daily ritual of listening to your heart beat with my sonicaid, sometimes recording it, never knowing if it would be the last time I’d hear it.

At almost 17 weeks I wrote this on a parenting forum where I had previously irued to seek reassurance that you would be ok ;

‘We found out that we are expecting a little boy who we named Milo. Milo is really poorly though, he has down syndrome and because of his cystic hygroma and almost certainly heart defect the hospital have told us that he will not survive. He's a happy little boy though and wriggling and kicking me a lot, it will be lovely to know that his life was only filled with love and his mama continuously carrying/ holding him. I need to feel like I've never given up on him as part of my healing.

I'm almost 17 weeks now and although he could go at any time the hospital have also said that he may survive to 23 ish weeks.

I have lot's of lovely supportive family and friends who are going to organise a blessingway for us both and crotchet squares each for a shawl to stay with him. I'm just focusing on getting by and enjoying this precious time with him.’

Your strength carried you forward to the next scan appointment and at 17 weeks I realised that you were such a fighter and that I needed to reclaim the hope that you could survive.  Whilst the consultant during the scan was still less than optimistic about your survival your father and I were quite excited that the hydrops wasn’t progressing and you were still a really active baby.  I finally gave myself permission to not hide my hope and belief that you could survive and also to start researching a little about your heart condition  Your down syndrome still seemed completely insignificant to the fact that you were poorly.  Although in retrospect I also underestimated the impact and severity of your heart condition.

You reached the 20 week point and the consultant was astonished that you’d survived.  I wrote this at the time simply ecstatic that we’d climbed Everest together ‘The most active baby all day apparently! The consultant was very surprised by how well he looked and said that he fully expected him not to have a heart beat today. The consultant got so flustered that his excess fluid had almost completely gone that he forgot to do half of the measurements and we had to go back in for another scan! Cystic hygroma now measuring 6.8 mm (it was 11!) which is only 0.8 above the normal range- and is now classed as nuchal thickening. Fluid around his body also massively decreased. We can finally start believing that we might have a baby. He still appears to have a heart problem (complete AVSD) so we are going to have an echo on Thursday- and he might prove them wrong again, we'll see! I'm hoping that Milo will continue to prove the consultant wrong and be the first baby he's ever had with these complications to survive. We're still not 'safe' as there is loads of time for complications to occur, but for now things are looking optimistic.

I think he's quite cute too! Sucking his thumb with his other hand by his face.

Milo you are amazing!

 x 

Creative Fun

Milo's health has improved over the last few days so we've had more flexibility to do different activities.  We've been having lots of creative fun over the last couple of days and Milo and the Berry have really enjoyed it. 

First of all we made playdough in 4 different flavours/scents/colours, using the this easy 4 minute recipe from the Imagination Tree Blog.   

We made yummy pink strawberry  for making sweeties and cakes.  The Berry enjoyed wrapping up her 'sweeties' in cellophane twists.

Yummy rich chocolate flavour

Mint chocolate chip ice cream flavour .

My favourite was cinnamon and nutmeg cookie dough!   Mmmm delicious!

 Patting and baking.

 Proudly showing daddy everything she had made.

 Practiscing cutting skills to give everyone a slice of the cake.

 Milo enjoyed squashing and pulling the yummy chocolate playdough.  He even tried to taste a bit and wasn't put off by the saltyness!

 Silicone cup cake cases were so much fun. Milo got really excited with them!

The playdough activity made me realise that Milo is ready to do some sensory food play and this might help him develop his self feeding skills and hand eye coordination.  'Messy play' seemed the logical way to do this.

We had some left over spaghetti and pesto and I stripped him down to his nappy.

Loving dangling 2 hands full.

I've just invested in a builders tray which is so versatile for containing activities like this. We love it!  They use them loads at the Berry's nursery and they showed me this book which really inspired me to get one.

 Looking pretty!

 He loves his mama!

 Yumm!

 So funny!

 Concentrating

Ta da, spaghetti baby!

Off for some water play in the bath!

 Spaghetti was such a hit I racked my brain to come up with other sensory ideas.  This sparkly packaging was another ideal texture to run through his fingers and less mess for me to clean up!

 It was another hit!

 Hilarious!

Love those little toes!  Gorgeous boy x