When I first started this blog…

“When I first started this blog”

These were words I read this morning on the blog of someone I don’t know. I don’t know her family, her daughter or her own story, yet her story crossed over mine. Two of my worlds crossed over, my SLOS world, and my CHD world. And it left a lasting thought, something I’ve been thinking about for days.

Her blog started months ago with a very similar thought about their future that mine did…not knowing what it would hold for their baby who was diagnosed with an almost identical condition to Chloe, Smith Lemli Optiz Syndrome and Hypoplastic Right Heart Syndrome. I would say the odds of these two conditions together would be fairly rare…though not unheard of. I connected with this stranger via the wonders of Facebook and we have messaged a few times across the last month or so. Their story started with the diagnosis in pregnancy, but that’s where the similarities ended. It was with a heavy heart that I read this morning, upon opening Facebook, that their little girl, after only a short 30 days on this earth, passed away. Their little girl was born with what the doctors said was severe SLOS…and her heart and little body could not repaired. They took her home, and she took her last breaths in her parent’s arms.

I cannot imagine how these parents must feel. And I hope that by no means do I diminish their grief or loss I hope by thinking about my little hero and all she has battled through and how she continues to grow and thrive. I’m so blessed. Mike and I are so blessed.

I’ve been around miracle stories…especially in the church (funny that)… stories where people were told that their baby would never walk, never be normal, wouldn’t make term in pregnancy. Stories where little babies have defied the odds and are true miracles. This little treasure that passed away yesterday, she defied the odds…giving her parents and family 30 days of her life, though gone too soon, the doctors never thought she’d make it that long.

I never thought I would have a miracle baby…but I realise that I really do. I guess I just get used to being around her…and I don’t want to brag or boast, or be one of ‘those’ people who are always going on about their child defying the odds, but indulge me for just a while to brag about my little miracle.

Smith-Lemli-Optiz Syndrome is not a kind syndrome. What syndrome is? If you’ve read my blog and googled away, you probably found lots of not nice information, scary information. Since joining the SLO family on Facebook, there have been 4 children pass away… the disease taking their life through the complications it causes to their bodies. One of Chloe’s specialists, upon meeting her for the first time was very surprised by her, baffled even. So much so he called the professor in the USA who studies SLO and enquired about why she would have a seemingly ‘mild’ version of SLO and such a severe heart defect.

Not that I think we should compare childhood illnesses, (I’ve written about this before)…but if we do, you would know that Chloe’s heart defect is one of the worst there is. Though because it’s the right side of her heart, not the left, it’s not as bad as it could’ve been. Years ago, children didn’t make it and would have died soon after birth, but surgeons these days perform miracles in those operating theatres, and many of you reading this have probably walked past a child in the street or shop, or seen a happy toddler playing in the park, and not realise that they indeed also have a heart defect. It’s a disease a child lives with forever, but is hardly noticeable except for the scars.

All that said, and all the obstacles Chloe has so far climbed and will face, she is a miracle. She is doing far more than anyone ever anticipated, has come through surgery far better than anyone anticipated…so I’m making a short a list of all that she has accomplished in her short life, despite her ‘expected’ limitations.

1. Firstly surgery. She sailed through. (not without pain and obvious discomfort…) But there were no surprises, no complications, no worries. Amazing.

2.  Feeding orally. NG tubes… hospital admissions…doctors worrying about her weight gain. Despite what was expected, Chloe has avoided ng tubes for nutrition and feeds orally. This is not common amongst infants with SLO…it’s very uncommon. And although the feeding is sometimes a battle, she puts on weight and is growing. In fact…I think she does extraordinary in this area (I won’t mention the solids battles).

3. Gross motor skills. Before surgery Chloe was rolling, and pushing up on her arms when doing tummy time. She’s been holding her head up since she was about 4 weeks old, despite being in heart failure then, and not being expected to do much due to SLO. She rolls to her side, kicks her legs…and is almost sitting up without help!

4.  Fine motor skills. Chloe has been grabbing and holding things for some time now. She passes objects from one hand to the other, pulls on things…and is very good at finding her dummy and putting it in her mouth. She can hold her rusks and suck on those. Fine motor skills that make her seem like most other babies her age. She’s even starting to hold her bottle (well, she can hold it actually, but doesn’t realise if she lets go the bottle doesn’t stay!)

5.  Language development. Chloe has been babbling away for many months, and she continues to add sounds to her repertoire. The latest one is…mummumumum… yep! She says Mum!! Well she doesn’t know it but I do…

6.  Social interaction. Chloe is very social and very curious. She has loved sitting at the nurses station when in hospital watching all the goings on. She loves to try and play with my phone and press the screen. She loves TV. She follows you around the room with her eyes and laughs on cue. Especially if you make silly noises. Poking your tongue out at her seems to illicit the best laugh and one very cheeky smile.

Well I could go on…but I think I’ve made my point. Chloe is truly a little miracle. She’s doing far more than anyone ever expected. And is thriving against all odds. I’m reminded of this verse in James 1:17..

“Every good and perfect gift is from God. It comes down from the Father.”

Chloe is a perfect gift. I’ve said it before, I’ll say it again…she is perfect. Not in the way the world views perfection, but certainly in God’s eyes she’s perfect…she’s perfect. She will face difficulties, that goes without saying, but I have faith and hope she will continue to defy the odds in every way. She has done so much already, and as I hear truly sad and tragic stories about babies who have left us too soon because of SLO, I am truly thankful that Chloe remains strong.

My heart goes out to those families who have lost babies because of SLO… I’m forever inspired by your strength and character and the fact that you shared your story, I’m reminded to be thankful for my blessing of Chloe. If you are reading this, you know who you are, know that your little treasure will not be forgotten, even by strangers like me who you have never met….your daughter will be an inspiration to others, and has touched the lives of strangers from around the world. Whether it was 1 day in the world…30 days or years…each life is one to truly treasure, and some touch more than they can imagine.

One month post glenn. ..

Today is exactly one month since surgery. … here she is playing happily. .. haven’t had a headache for nearly a week now!

Another week goes by. ..

Well. .. last week we were still struggling with Chloe at home. Thankfully, we have some doctors who listen and are willing to help. After seeing the  paediatrician and getting some stronger pain killers we definitely started to see a more settled Chloe.

I’ve also taken her for a checkup on Tuesday with her cardiologist and another echo to check the fluid. When I take her to the cardiologist she gets her obs checked by the nurse first. The nurse asks me first how things are going, to which I reply not great. Sometimes I think that the medical profession just expect people to lie and say things are awesome…I get the impression that this is what people do.  Not me. If I don’t speak up for Chloe, who will? So I never lie.  She has really struggled getting over this surgery, and from some of my research it seems that she is taking longer than most (not all) kiddies do.

My gut feeling is that she doesn’t handle pain really well. I find this really interesting when talking to doctors because they nearly anyways say how babies heal quickly and she shouldn’t feel pain. But if adults have  different pain thresholds why wouldn’t children or babies?

Anyway, Chloe had her obs done and her ecg was great, her o2 sats were low 70s (at home  usually high 70s) and her breathing is very comfortable. Her echo showed there is still a bit of fluid but not enough for the cardiologist to worry still. He said the shunt is working perfectly. He also said that he expected to see a few abnormal heart rhythms but Chloe’s heart pumps perfectly! Go Chloe. So this means that, all going well Chloe will not need anymore surgery on her heart until she is ready for the fontan as a toddler. .. maybe 4 years old. Great news!!

So we continue to work on feeds. Chloe is still having a hard time fitting into a good feeding routine but she is a lot more settled. I’ve had the speech therapist over and she is helping working on getting Chloe to enjoy food because she really doesn’t! So now it’s all about messy play. .. for those who know me well, you would be aware of how much I hate mess!! I wish it was summer so I could strip her down to get messy without clothes on! Here’s a few happy pics of Chloe enjoying getting messy!

She’s enjoying sitting in her new chair called a ‘snug’…its great because she can actually reach the tray unlike in her highchair!

So she’s not currently on any pain medication so that means she’s  improving each day which is great. We

even all enjoyed a walk on the beach last week. Chloe in the ergo. .. she fell asleep. ..and Mini (our dog) taking a dip in the freezing water!

Finally a doctor who listened!

We are blessed with a great paediatrician. ..

I should say how we came to find him. .. Thank you Google. I read his bio online before Chloe was born and after we came home when she was born I called several times nagging to get an appointment!! Haha. He had experience with cardiac defects and he is actually the doctor who suspected SLOS and sent us for the blood test.

So that aside he met us in his rooms today and gave Chloe a thorough check. He had been baffled as to why she is so unsettled and was worried about a few things. He checked for ear or throat infections and sent us to get a chest x ray in case the fluid had built up and that was causing pain. He also checked to see if he thought she was teething but said that was unlikely. The xray came back with no worries and he couldn’t see anything else that could be bothering her.

Anyway he gave us some stronger pain medication but to use as needed.

Now that she has been checked I can rest assured, in a sense, that nothing is seriously wrong. I have to wonder if hospital and the complete sensory overload is just the root of all the problems. Now I guess Chloe is old enough to associate bad things around her. Like she used to love getting undressed and wiggling around naked. .. now she isn’t a fan. .. perhaps she associates getting undressed with another medical test? This is huge because it impacts nappy changes and getting dressed and bath time. .. Another one is feeding and the bottle. .. she will start to drink about 50mls then hiccup or cough or take a deep breath. . all this seems to trigger some pain in her chest which sets her off and then she doesn’t want more. Or taking medicine is gross so now she won’t take a bottle. .. well you get the idea.

Our paediatrician tends to think after checking her that this it is a very real possibility that its just a huge hiccup in her daily routine and she’s not handling it well. .. which could be a deeper issue related to SLOS.

Even though I get frustrated with the doctors not listening I’m relieved to find one who does and I’m reassured that Chloe is doing okay despite her current moods. I do remain positive that things will improve but that doesn’t mean the last few weeks haven’t totally sucked!! Both Mike and I are hoping the stronger pain medication will bring her some relief.

Trying to return to normal is hard…

Well it goes without saying that being in hospital for anyone is a big change from routine. A typical day for us in hospital with Chloe is boring, but busy…and slightly depressing. A typical day would be something like this…

Overnight Chloe would have her obs (observations) done at regular intervals. For the first few days post surgery this is done every hour…yep, you read that right. Every hour! How can a baby possibly get any proper rest, but I guess it’s important. For Chloe, obs include her Sats, temperature, respiratory rate, pulses and sometimes weighing nappies and writing down feeds. After she is more stable the obs change to two hours, then four hours.

So, in the morning she is usually up early, not that much sleep has happened, for obs, including a daily weight. Then the nurses ‘hand over’ for the next shift at 7:30am and that nurse repeats the obs for her information. At some point in there Chloe gets her medicine which I’ll talk about later.

At anytime between 8:00 – 9:00 the cardiology team do their rounds and make plans for the day. I always try to not miss this, though I have once because I couldn’t see them anywhere so I popped downstairs to get coffee…five minutes I was gone! Oh well.

After that it’s the surgical team who like to pop in and check on her. Then it’s more obs, medicines, feeds, attempts at sleeps…sometimes the dietician, the pain management team, the physiotherapist, the Reg on…more obs…feeds, nappies..attempts at sleeps.

If I’m lucky, a cuddle mum might be on the ward, these are volunteers who are give up their time, I found most of them used to work in medicine or have experience with these kiddies, so they are used to babies like Chloe who turn blue when they cry. They might pop their head in to cuddle with Chloe so I can have a shower or grab a cuppa.

Then the cardiac team repeat their rounds in the afternoon, usually around 6ish..and again I hate to miss rounds. I’m pretty good at guessing when they come now…and I know their routine. First PICU…then Close Obs..then the rooms down the hallways. It can be faster or slower depending on the kids on the ward and how complex they are…but I’m pretty good at sussing that out too!

Then nurses do ‘handover’ again…at 7:30 and that nurse repeats the obs even if they were only done at 7:00. Then it’s the night routine again…’rinse and repeat’ as such.

The first time around with Chloe’s PA Band surgery, that happened at New Years, was a whole different story. Perhaps it was because she was still essentially a ‘newborn’..and not totally aware of everything going on, perhaps it was because I hadn’t truly bonded with her yet, or attempted any kind of routine…or perhaps I hadn’t really seen her personality…but this surgery and the recovery has been much more difficult. The only easy part is that I knew what to expect from the hospital (this was our 5th visit in 6 months) and how to stand up for my daughter.

We’ve been home a week and she is still very unsettled and upset. The doctors throw around lots of theories and their ideas, and yet to me it seem that none can agree… here’s a few typical quotes..

“She’s not still in pain…two weeks post open heart surgery for a baby she isn’t feeling chest pain.” – Cardiologist and surgeon.

“She’s probably still experiencing the ‘Glenn Head’ so that might be causing some pain.” Cardiologist and surgeon.

“There might be some tenderness in the wound.” Cardiac team.

“When the drains come out she won’t be feeling any discomfort.” Cardiac team.

“She should be bouncing back to her normal self in 2-3 weeks.” – Cardiac team

“It will take 6-8 weeks for her to fully recover properly.” Cardiac care nurse

“Keeping her elevated on pillows will help the headache.” Cardiac nurses

“You’re not allowed to put pillows in the bed to elevate her.” Cardiac nurses

“Some kiddies don’t bounce back as quick, keep giving her regular panadol.” Cardiac surgical fellow

“Only give panadol as needed, she shouldn’t need a regular background of it now.” Cardiac nurses

“She shouldn’t be this irritable 2 weeks post surgery, must be something else wrong.” Cardiologist

And the one I really like…”It will be much better when you go home, she will settle back into her own surroundings and be much more settled.” Cardiologists….hmmmm…LIE!

Confused much? Yep, me too. What’s a person, a mother… supposed to do. After we had been home for three days, and the majority of those three days she had cried whenever she was awake, both Mike and I knew she was still in pain and nothing was working. We were told to call the Close Obs unit if we had concerns and it was out of hours. So on Sunday night this is exactly what we did.

The cardiac fellow phoned me back. What follows would make most people’s blood boil..but when you are talking to a mother about her daughter, don’t even get me started. She offered no solution to the constant crying and mooted the idea that she was teething and the pain wasn’t related. About ten minutes later she phoned me back to apologise for a text she sent me accidentally. What the? I knew nothing of it as I had not checked my texts, since I was busy treading the floors with Chloe rocking and bouncing her to try and soothe her. Apparently she didn’t mean to be rude…whenever someone starts a sentence with this disclaimer I know they absolutely did mean to be rude. She had sent me the text that was meant to go the ward nurses explaining what happened. Needless to say the text was not favourable towards me.

Following that was another night of Chloe waking every hour crying. By this point I think she is so exhausted and overtired that it’s probably everything making her cry…the headache, the pain, the lack of sleep.

The next morning we call the paediatrician, it was a public holiday, but thankfully they always have someone on call. He was very helpful and listened to my concerns and suggested a stronger pain medication that will help her sleep overnight, not usually given to babies under 2, but we gave a small dose and Chloe slept for almost 4 hours, and for the first time in days woke up smiling, not crying.

Still, it doesn’t help in the day and Chloe remains very unsettled and upset. She has had a couple of hours where she is happy playing, and is tolerating lying flat now for some time, so she is slowly getting used to the new circulation and pressure.

I had an appointment at the Mater on Wednesday for a repeat Echo, as there has been some fluid around her heart, and a surgical review where they do her Obs…again…and take the dressing off and make sure the wound is good.

All of that went quite well, and I once again expressed my concerns about her continued irritability and upsets. Still falling on deaf ears in most cases. Her feeding has been poor too, and there is no weight gain post discharge. How could there be? She’s probably burning all her calories when she screams for 6 hours a day!

What fascinates me the most is that while we are in hospital it’s all about feeds and weight gain…and when I call up post discharge and show concern over poor feeding and no weight gain I get told to stop stressing and there’s nothing wrong.

So skip to now…Friday night, and after a week of minimal sleep for both Chloe and I…and repeated upsets and screaming where she does turn a shade of blue and purple (this will be a permanent fixture) the paediatrician finally listened to my concerns. Most nights since surgery, Chloe has woken every hour crying through the night, if I’m lucky she will sleep maybe 2-3 hours, but will need some resettling. The paediatrician is going to check her over on the weekend which is amazing he will give up his time to do this.

A new part of our routine is the daily aspirin. Chloe is on aspirin for blood thinning, as this is vital for her new circulation. I’m so sleep deprived I need to keep a check that I actually do it on my trusty app on my phone, where I log feeds, bowel movements, wet nappies, medicines and sleep! Love modern technology that feeds my routine obsessed behaviour! Since they don’t make baby aspirin like they do panadol, I must draw up 10mls of water in a syringe and put this in a medicine cup. I then dissolve one adult aspirin in the water. I then take a syringe to draw up 1ml, making sure I get the fizzy/frothy parts of the solution. I’m lucky that mostly Chloe takes medicines quite well, and I’m very efficient at getting the syringe in the corner of her mouth, a gentle blow on the face and put the dummy back, and she swallows!

So this post is a little rant and vent. Chloe is just not improving a little each day, she remains irritable and upset… which is upsetting for her and for me, there is nothing worse than seeing your child in pain and feeling helpless to do anything.  Hopefully my next post will be a good update!

We are home!!

On Thursday Chloe’s cardiologist walked by our room and said “what are you still doing here?”
To which I explained that the cardiologist (there are three amazing cardiologist’s who work on a week by week basis when in hospital, but you see just one as an outpatient) was a bit concerned about Chloe’s irritability and I had concerns over managing her pain and headaches.

After much discussion he decided that there was nothing they were doing in hospital that I don’t do at home with her and they were satisfied she was stable so we were discharged. Which was awesome news. Although I was concerned about dealing with Chloe’s pain at home with only panadol.

Anyway, we packed and left and were home by mid afternoon on Thursday. Chloe was her usual awesome self in the car, sleeping most of the way while sucking on her fingers. We got home and she had a bottle. ..then spent the afternoon in my arms because that’s the only place she is really happy.

But each day brings her closer to being herself and she is starting to have longer periods of happiness and play time.

Due to the ‘Glenn headaches’ we’ve elevated the mattress (thinking of  velcro-ing her to the sheets so she doesn’t slip down!) And this seems to help. Up until yesterday she really hasn’t tolerated lying flat which is a nightmare when trying to dress her or change her nappy. The flat position just adds to the pressure in her head making her head hurt. But she is starting to play for a while on her back and not cry as much when being changed. Which is great for everyone! As you can imagine the crying just makes the headache worse.

So being home is great. We can attempt to get back into some kind of routine. Though Chloe has gone back to waking every 2.5 hours in the night so there’s not a lot of sleep happening. For anyone! I’m still giving her panadol regularly and she needs a dose in the middle of the night so I get up and give it to her even if she asleep. But it’s still better than hospital. In hospital you never get left alone!!

Next week she needs to have another echo and xray as there was a small amount of fluid around her heart and in her lungs which can be quite normal post surgery.  There’s not enough there to warrant medication but they want to see it reduce. I also will see the surgeons who will remove the dressing on Wednesday. Can’t wait!

Feeds are again a problem…*sigh*…but I managed to convince the doctors to just give her a chance to prove she can feed and put on weight, so it’s back to twice weekly weigh ins and a feeding plan from the dietician. As long as this happens we avoid an ng tube!

I often post pics of happy Chloe. .. they are much cuter, but these pics have been few and far between the crying and screaming. Poor thing has been so unhappy. Still she bounces back much faster than I would and isn’t having ‘spells’ anymore. Though I’m sure she will trouble some who see her cry and she does turn blue and purple due to her o2 sats dropping when she cries and the mixing of her blood. Her sats regularly sit between 70-80% which for a ‘normal’ person would be cause for a trip to hospital. She also is on daily aspirin to keep her blood thin. This involves dissolving an adult aspirin in 10mls of water, then using a syringe to draw up 1ml making sure I get the ‘frothy’ dissolved bits of aspirin.

But. .. all that aside she has come through this surgery amazingly, with no complications. The recovery continues and is much worse than her previous recovery from the PA Band surgery done earlier. And although no parent wants to see their child in pain, I know that ‘this too shall pass’.

And another of Chloe enjoying bath time. ..

Home is in sight.

It’s been a long day here in the hospital. Chloe had quite a good morning playing and was very contented. I love how she puts on the happy show for the doctors and then cracks it when they leave!!

They are talking about us heading home tomorrow as there really isn’t anything they are doing here that can’t be done at home. Just continue to monitor feeds and her recovery.

They don’t like to send you home with strong painkillers so that will be the one thing that keeps us here. She started having her discharge checks which include an echo, Xray and ecg. All is good so far though she hasn’t had her ecg yet. The echo showed some fluid around the heart which is normal as it develops from the irritation caused by surgery. It’s quite small and won’t require medication at this stage. I will probably need to take her for an echo in a week or two to monitor it.

Chloe was largely settled until the echo just after midday. .. maybe it causes her pain which is unlikely, she usually loves them and even for a short time today she held the ultrasound wand!! But towards the end she was very unhappy and unsettled we had to stop. Perhaps it was another headache. .. anyway, she slept in my arms after for some time and was quite cranky all afternoon. I shouldn’t add up all the hours I’ve spent this last week cuddling and soothing her! Still. ..I do love the cuddles so I’m not complaining.

So hopefully another night here and she will be even better come the morning. And when they say we can leave I will be out of here so fast it’s not funny!! Though I won’t enjoy the crying at home. She will still experience some headaches for weeks to come.

So anyway, we will go home with our ‘smurfy’ little Chloe. She will always look a little cyanosed. ..a little blue. Though at the moment she’s quite pink! Her oxygen sats are mostly in the 70s and they say this will slowly increase as her body adjusts to everything. Mainly the new blood flow which no longer pumps from the hypoplastic right side but drains passively into the lungs now. Our only risks really are respiratory illness. She had a few irregular heart rhythms earlier in the week but that is settled. And when she cries she does turn blue. But you get used to it!

Hoping to post a blog tomorrow from home. .. today’s pic of a happy posing Chloe.

This time last week. ..

This time last week my precious little Chloe’s heart stopped beating. ..on purpose. What surgeons do these day for these bubbas is just amazing. Her surgeon stopped her heart to perform what I can only imagine is a tricky surgery on her tiny heart. After an hour or so they turned the machine off and Chloe’s heart beat kicked into gear. Then the surgeon finished the surgery on her beating heart. Amazing.

This time last week they were saving her life. Sure her heart isn’t ‘fixed’…it will never be. .. but it will be ‘managed’.  Not that long ago a baby with Chloe’s heart defect would not have made it this long. It is a miracle that there are surgeons out there who can do what they do. Now because of that we get to enjoy her for longer.

This time last week Mike and I waited to hear good news. .. news that Chloe had made it through surgery with no surprises or scares. We were very blessed to hear that news. She did so well, better than expected I suspect.

This time last week I was very nervous. I always go in expecting the worst but hoping for the best. It’s the only way to survive those hours of waiting.

But my little hero is doing really well. Now a week past she’s starting to giggle and smile and play. She seems to be starting to cope with the change in her circulation and the headaches are decreasing in frequency.

Now we work on the same old story. .. feeds!! At the moment we are treading a fine line between bottle feeds and re inserting the ng tube. If we weren’t in hospital where they monitor all this closely I probably wouldn’t worry. And just ride it out. I mean I probably wouldn’t eat and would feel miserable for weeks after open heart surgery. So at the moment the doctors are happy to just wait and see.

The cardiologist has suggested maybe heading out for a walk with her today so if she is settled we will go for a stroll towards southbank. .. It’s a nice day outside.

Maybe we will be home by the end of the week…I cannot wait for my own bed and home comforts. And I can’t wait for a steaming hot shower. … the showers in the children’s hospital are fixed on a lukewarm temperature so kiddies can’t scald themselves.

A baby swing on the ward. ..

Chloe loves the swing at home and I discovered today that she likes it still. .. found this swing on the ward and is giving some relief for her and us with the constant cuddling and rocking. I didn’t manage to get her smiling in camera but there were a couple smiles this afternoon.

Day 6…

My last post showed a smiling happy Chloe.  Unfortunately that didn’t last. The last couple of days have been rough on everyone.

Firstly the rough stuff. The night following that picture we left Chloe with the night shift nurse and headed out for a steak dinner and a much needed glad of wine. Chloe was still on the close obs ward so was being watched closely. Whilst I hate leaving her bedside I know for my own sanity is really important. Otherwise you become more and more stressed yourself. She had fed quite well during the day but was still experiencing headaches. When we left she was settled but awake. I  informed the nurse to call if there was any change or concerns.

Mike and I had an enjoyable late dinner and the nurse called me at about 930 to say she had tried a bottle (albeit too early because she didn’t listen to me) and Chloe was asleep. She said not to rush back and that she would call if necessary. So we decided to leave her and head back to the unit for some sleep. I called to check on her around 10 ish and to tell her how to make her formula up. There were no issues.

She called at 600am to inform me of what happened overnight and this is where the games begun. At about midnight, in all her wisdom, she decided to consult the doctor about putting in an ng tube to feed her even though I had made my feelings perfectly clear about ng feeds. Chloe was down in volume but we had all agreed this would be okay as she usually plays catch up. Also, we were trying to wean her off another formula so there were some different tastes going on for Chloe.

The nurse did not phone me as instructed and we raised some ‘hell’ when we rushed over after the 6am  phone call. They had felt that she needed more volume in feeds to assist in the new blood circulation but it turns out that just wasn’t the case. Her lower sats had nothing to do with her feeds and she was perfectly stable. I won’t go into detail about what happened but needless to say Chloe didn’t need the trauma of an ng insertion overnight especially without mummy or daddy… and of course she finished every bottle I gave her the next day. If the nurse had of phoned us instead of just doing procedures I could have repeated my feeding instructions to her and come back to settle and feed myself. It goes without saying that that nurse will not be caring for our daughter again.

Chloe is still struggling with pain and headaches and both Mike and I aren’t getting much of a reprieve from the constant holding and rocking and cuddles we do to try and calm her.

Lying her down is awful as the blood just rushes around changing the pressures to her head which cause the migraine so being upright is really the only thing that works.

On the positive side Chloe is moved from close obs to a single room next to close obs where we can stay by her bed. Mike stayed last night as this week he will be at work and can’t put in the long nights to settle her. He spent the majority of the night holding her in the rocking chair soothing her between crying. Funnily enough, that’s exactly what I’m doing right now while typing this.

Chloe had another echo today to check the circulation is working properly and all the doctors are pleased with how is going. Which is good news. She does seem to be somewhat more irritable than they expected so they are checking for any other issues like a UTI from the catheter post surgery.

No other news really. We are just hoping she can start to get used to her new circulation and things will start to improve for everyone.