I can’t believe I am writing this already, but Max is 1 next week!

Today it is his year review at Great Ormond Street Hospital. Only one parent is allowed to go with him and obviously face coverings must be worn in the hospital due to Covid.

So we decided it would be me to go with him and that as I would be stressed out enough going to the hospital it was probably better for me to go by train as that is the way I would normally go. Rather than trying to learn the drive in which stressed me out last time and resulted in Tom going instead of me.

I am extremely anxious, not enjoying the train journey in at all. But know it is to see how well Max is doing (amazingly I’m sure) so all the anxiety is worth it. Face mask on, on the train with one wide awake, should be napping but happy baby 🙂

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Just had our appointment and everything looks good. The physio is slightly concerned there may be some weakness in the left ankle that could need support but otherwise very happy with his progress. Head is also steady and following the curve so looks like everything is all ok and Max is smashing it out the park like normal.

Cake treats for him on the train home after a very bizarre taxi ride. Got out to open the door without shoes on and after I was in told me he could only take cash as he didn’t have internet for card 🙄

Boy done good as always! This weekend we are running away to Norfolk for a seaside trip to see Tom’s mum and we can not wait! Countryside, fresh air and family time is very needed!

Yesterday was finally our MRI day!

We got into London early and had some breakfast before heading over to the Nightingale ward at GOSH. Max wasn’t allowed any food from 9.30am and he normally feeds every 2/3 hours in the morning. So we were using every tactic we had up our sleeves to keep him distracted and happy.

On the ward they gave us our own room which was useful as we could put all of Max’s things in there. Also quite helpful to keep him distracted whilst hungry and stop the screaming getting to everyone else. Daddy’s funny face definitely helped and he was laughing his head off at times!

He got very hungry and upset but I managed to calm him down and get him to drift off to sleep just in time for them to take use downstairs for the MRI.

I held him as they gave him the general anesthetic and it was horrible. I know it absolutely wasn’t but I just got flash backs to when they put our dog down. Lying there on the floor with him and watching him drift off to sleep. It was heart wrenching, so watching Max go off to sleep even knowing he would be waking up again just flooded me with horrible memories. His eyes going back and becoming very heavy very quickly.

I was ok until we got back up to the room. Then I had to give myself a good shake before we went to get some lunch at the lagoon. They gave us a buzzer so we would know when he was out but we were pretty sure we would be back up waiting for him fairly quickly. Lunch was a bit rubbish but it was food and we sat eating in silence. I think the stress was getting a bit much.

We went back up to the room to wait and about 90 mins later we were rushed down to recovery as he was awake and very upset needing food. I just wanted to run, the lady waited for the elevator and I just wanted to run down the stairs 3 at a time! When I could hear him crying down the corridor it was a sense of relief but also wanting to get in there and cuddle my baby.

I fed him gave him cuddles, made sure Tom got cuddles with him too so he relaxed and knew he was ok. Then we took him upstairs again. He was fairly grumpy for a while but didn’t need oxygen or anything which they were concerned about because of his never ending cold. He had lots of feeds and lots of cuddles and even better than that got a cuddle from the lady who saved him! The Dr from UCLH that had organised the fetal surgery and was with me every step of the way looking after me, making our decision easier and staying in constant contact, came over to see us in hospital. It was amazing to see her, she honestly feels like family. As soon as we saw her and had a big cuddle it was like a family reunion. She hasn’t seen Max since he was in NICU so it was honestly amazing!

What started out as a stressful day, ended on a lovely note. A bit if a long journey home standing on a packed train with a baby in our arms to stop him crying. But we got home, with our gorgeous boy. And we got some amazing cuddles from our awesome twins.

This week was a little tougher, but I always find Great Ormond Street Hospital trips difficult. It is the anxiety for what are we going to be told and seeing lots of poorly children who don’t deserve to be poorly that is hard.

Thankfully I had my husbamd with me this time, it is amazing how much more relaxed I feel when he is by my side. But, it still really doesn’t stop the anxiety!

We had a head ultrasound and then a meeting at the Spina Bifida Clinic. The headscan went well, he was such a happy content baby!

We then got lost 🙈 but finally found where we were supposed to be. To our surprise, we walked into a room full of specialists from each department! We didn’t realise we were at the Spina Bifida Clinic appointment, thought we were just seeing a nurse for check after scan – bonus! A physio started checking Max over, whilst talking to a urology nurse about his bowles and bladder appointments. All good.

Then came the head chat….dread!

His head is within the same percentile line, which they are happy with. But it is slowly creeping up and has been doing so over time, creating its own curve. We need to keep measuring to make sure it doesn’t go over a line and crossing everything we have it plateaus. Both my husband and my son have massive heads so we are hoping its just that. But tbh that’s probably just wishful thinking. The scan, however, also shows a sign of ventricles increasing. Initially the nurses weren’t too concerned. They said he was very alert and happy, with a soft fontanelle. But they need to watch the ventricles as they are increasing. Then we discussed the fact that he chokes occasionally when feeding. He used to do it a lot, hence we were refered to a speech and language therapist to check his feeding and get their opinion (they were happy that it was due to fast flow/overfeeding reflux) but hasn’t been doing it so often anymore. At this point one of the nurses popped out the room and came back in a few minutes later having had a discussion with the legend that is the neurosurgeon. He feels that although he is happy within himself and the fontanelle is soft, his head is increasing as are the ventricles and it is often the small changes gradually that make a decision to have a shunt harder, as it may level or it may continue to gradually increase (which may be unnoticed to us/non professionals if not carefully monitored). He is also concerned that the choking is caused by chiari malformation or even the affect of his previous herniation thay was reversed following the surgery. We can’t know without an mri if it is this, or just milk going down the wrong hole from reflux or fast flow.

Typically whilst I was feeding him he had a proper choking fit. 😥

Unfortunately, Max is currently a bit chesty with, what they described as, sounding like the “beginnings of bronch again”. This means that he can’t yet have a general anesthetic, he can’t have sedation due to the choking and a feed and wrap they don’t feel would work because he’s a little bit older and its a 70min scan. Which means we need to wait for the mri date (they want it in the next 2 weeks) and hope the chest has lifted by then.

Going to see them all is always mixed feelings. They are incredible, and really know their stuff. But, unless they tell me everything is looking good, he’s not got any issues. They could tell me 100 positives and 1 mediocre and I can’t stop fixating and getting anxiety about it.

Next step though, get the mri booked in ASAP and have the review with neuro in January to go through it all and hope his little brain is ok still 😦

Also fingers crossed this isn’t the beginning of bronchilitus and we don’t end up in hospital over Christmas!

Another day at GOSH!

This morning I had to get up earlier than normal to make sure I got to Gosh for Max’s 9am appointment. We have a radiology, urology and nurses appointment today so all fun and games with lots of poking and prodding. He’s also not feeling very well bless him. Henry got diagnosed with Scarlett fever this week so is on antibiotics. But I’m watching Max closely incase he gets it too. He’s currently got a nasty cough and a cold which meant he woke me up 4 times last night and didn’t want to go back down either. Given that we had gotten all three down by 7.30 and eaten dinner by 8pm last night we were feeling very proud of ourselves so I think he was just making up for it. Just what you want when on the 7.30am train into London and having to stand so you are with him.

When I got to Gosh I was 30 mins early so time to go and grab some breakfast at the lagoon before my appointment. I went and sat in the radiology waiting room and my heart broke in two. A poor little girl not even 1 was sat in the waiting room cuddling daddy with her mummy and sister next to her. The dr came out to get her for the xray and I have never seen a baby switch to absolutely petrified so quickly in my life. She screamed and screamed like she was so scared of what they were going to do. The poor mum just had to sit there and let the dad take her in, still hearing her scream in the waiting room for 30 mins. I mouthed are you ok and she just started crying, just wished I could cuddle her and make her better but she said she was fine, scooped up her daughter and held her tight. The feeling of knowing you have to do something your child is going to hate or put them through something that petrifies them that much, knowing it’s for their own good is such a hard/heartbreaking thing to do. I was so close to crying for her too.

When I got to the appointment they asked what I knew about the test – virtually nothing – and if he had been taking antibiotics. When I said no, she seemed concerned and said she will have to find out whether they can do it or if we will have to reschedule. I was not amused, no one has been in contact and I had come all this way in rush hour. They better do it!

They did the scan, she said his urine was small and he hadn’t emptied his bladder so they were a little concerned. She also thought there was a small amount of reflux. Again I’m not sure what this means really but can’t be a good thing? Just makes you panic when they give you little bits of info. I know it’ll be fine either way even if we have to catheter. It’s just another thing that’s not fair and I wish he didn’t have to go through alongside the anxiety of the unknown killing me.

Feeling really emotional and like I could cry at any given second. Went up to my next appointment in urodynamics and had to wait 50mins before being seen which only added to my “I want to cry mood”. But it was improved by an amazing little boy with a lovely mum talking to me. The boy came in and started laughing this hearty, loud, amazing laugh that just made me smile and feel better. These kids 😍… I’m sure it’s us as parents that get more upset about what they are going through than they do!

They have put an alarm in his nappy to tell me when he pees, so now it is just a sit and wait for it to go off so they can measure his wee. He has just done a wee though and she said his bladder was empty so might be sat here for a while. I spoke to the nurse about it all and she said she’s going to put him on antibiotics for the catheter but also some for his chest just to make sure the cough doesn’t get to it.

Speaking to my fetal surgery girls and I just said to them no kid should have to ever come to hospital. Most parents say they wouldn’t wish their baby to be any different as the Spina Bifida makes them who they are and strong. I know my kid would be strong without it. I fucking hate Spina Bifida. It definitely doesn’t make him who he is, he is strong and amazing without it. I love him regardless but wish I could take it away for him. No child deserves to go through this sort of shit. Not just Spina Bifida, but anything that brings them into hospital. Poor kids. Life is cruel and unfair…who ever decided there should be these types of illnesses for children to suffer is one mean mean buggar!

The alarm went off and he had emptied his bladder which is a good sign. Alarm back in and wait to see if he does it again. She’s seen him empty his bladder twice and seemed happy with that but doing the last test just to make sure.

When the dr came in to see us she explained that there’s no sign of damage to the kidneys but, as expected with SB babies, there is reflux to the kidneys. His bladder is also overworking to empty itself which has led to damage to the bladder and its misshaped now. They have given us the prescription for antibiotics that he has to take daily for the foreseeable future to prevent against utis. Tbh I’m a bit gutted, although nothing massively negative going on here we will have a daily reminder now that he does have spina bifida. Before I could have days where I forgot, they were the good days.

After a very long wait for the prescription and a walk back to the train station as there weren’t any cabs free on the walk we made it home. I was shattered and just wanted to cry. Curled up on the sofa in front of the fire and had a good sleep, before the twin carnage began!

I managed to put him down for 30 mins and he woke up crying again. Everytime I tried to put him down he cried and wanted the boob for comfort.

I literally had him asleep on me all night. Meaning no sleep for me. My mum took him off me and sent me back to bed this morning. It has been ridiculous. Even today he doesn’t want to go down really. We’ve moved on to giving him a dummy. But he really isn’t happy about being left.

I get it though, he’s had a pretty scary week and is now in a different environment again so is probably just out of sorts.

So I went down at 4.30am with my expressed milk to go in the fridge, as has become routine lately. Max has been moved! They said that unless there were 2 emergencies we’d be staying put, so sounds like they’ve had a rough night bless them.

He’s been moved into HDU and has a big room to himself. But the bonus, I can pick him up whenever I want!

Now he is more stable and off all the machines I am going to attempt a trip home. We have so much milk in the freezer I need to try and take it home. Plus I haven’t seen the twins since Monday (husband got them up and took them to nursery Tuesday morning) so I feel really bad for them. They probably feel like we buggar off for a holiday every month without them at the moment.

As soon as we leave the hospital though, I feel horrendous. I hate being away from Max and need my husband. Why did I force myself to do this. Even the joy of my twins isn’t drowning out the horrible feeling.

Max is doing great though, even on the bottles. Which is great as means he will take a bottle in the future when needed.

Just wish I could split myself in two.

I can’t say PICU without wanting to say chu or boo. But nonetheless we have entered day three in PICU.

I have just done my normal 5am wake up, pump take it down and check on Max. He is doing well but the decided to try and let him breathe unassisted for a 30 mins to see how he went.

He managed for a while with a bit of a low level of breathes (12 when it should be more 23) but decided he was going to stop entirely whilst I had gone to pump. So they’ve turned the ventilator back on.

Yesterday the husband went home for the afternoon to see the twins and whilst he was gone it was a bit of a female friendly zone on the ward. We were talking Rue Paul (apparently very good), dogs, men, potential engagements. All light hearted and very funny. Im not sure if it is because I have started to relax a little or whether it genuinely was a lot quieter on the ward but we had a good day.

Max has been quite fiesty, the first night he was here he pulled the catheter out. Today he has pulled the canular in his foot out and the later in the day decided to pull out the feeding tube. Everytime he gets moved, or nappy changed he seems to get a little angry and all the stats do what they shouldn’t. So takes a while to calm him down and get him back in the room. But the majority of the time he is behaving and it is very calm.

He scared the nurses a little bit and decided to hold his breathe again earlier in the afternoon too. Apparently went every colour of the rainbow before going a lovely purpley blue. But he seems to be doing it when I’m not about which saves me the stress at least I guess!

He is still on morphine and is being fed ebm mixed with his iv fluids. Only 16ml an hour but it’s something and he is taking it. He is also being given another drug that calms him down and makes him sleepy when he starts to get a bit too lively.

I didn’t wake the husband up until 10am this morning, I think he was confused how late it was. When we got back down to the boy, the consultant came over and said he thinks we’re close to getting him off the ventilator! He then disconnected it to see how he reacts in a managed way and he did really well. So they have given him steroids to help with inflammation of the voice box and have stopped iv/milk to ensure he has an empty stomach. He is currently asleep but once he wakes up a bit I think they are going to give it a go.

His Ventilator is out! Just on oxygen now, still has the catheter and feeding tube in but so glad the ventilator is out. They are going to keep assessing him throughout the day as well as increasing the feeds quantity but reducing frequency. So giving him 3hours worth in an hour. He is currently on 16ml an hour (100ml per kg per day spilt across the hours) which seems like nothing but is apparently all they need. If he can handle the higher amounts without too much pressure on the lungs causing him to stop breathing again we will be discharged to a ward where they can monitor him.

He behaved! We are now awaiting a bed on the ward or hdu but it is already gone 8, unless there is an emergency we will stay here.

Time to get some rest. We’re still in their rooms upstairs as we’ve not been given a Ronald MacDonald room, but to be honest so long as we are near Max I don’t care.

I woke up at home this morning. My husband messaged to say that Max is going to get discharged home today. The only reason they have to keep him in is that he’s super cute, so can’t justify it really. This is obviously amazing news, just have to wait for the drs to do their rounds.

It’s taking forever, so I’ve decided to go over then I can sit with him in the back of the car. Also means the twins can see Daddy.

We are home. Max is fine, but every time he coughs I worry he’s not ok. He is also being extremely clingy. Wanting to be fed constantly, I get it is for comfort but no idea how he is going to do this over night!

We are currently sat in intensive care after a ridiculously scary day.

Max has had a bit of a cold that I put down to milk puke for the last couple of days. Yesterday he kept trying to cry but no noise came out as if he had a sore throat. Then over night he kept screaming as if he was having a nightmare, but wouldn’t wake up. He fed yesterday but less than normal and his latch hasnt been great but overnight he refused to feed. He wouldn’t wake up even when I stripped him off. After almost panicking I managed to get him to feed at 6am (last feed before that was 1am).

Then we tried again at 9 as he kept crying out and was obviously due a feed. He wouldn’t wake up. So with the health visitor coming at 11.30 at 10.30 we were about to get a bottle out to try and get some fluids into him. He woke up so we decided a feed direct might work and put him on the left boob. He stayed on for 20 mins (normally averages around 8 mins) and the health visitor showed up whilst feeding.

We were discussing Fridays visit to GOSH as well as my concerns over him bot feeding and screaming out when he went blue. He stopped breathing for at least 30 seconds and was unresponsive.

I panicked. Gave him to the health visitor as she is the professional and cried. I couldn’t bring myself to look at him. He seemed to take forever to not only start breathing again but to actually become responsive and get colour back. Even then his eyes were spaced out and he was grey. He was not ok. We were about to call the GP when he did it again so called 999.

They were sending out a paramedic car and when we were sat with the health visitor he had another episode. So we rang 999 again and they sent out an ambulance as well. The paramedic car arrived whilst on the phone.

I was an absolute mess. My husband stayed calm but I was shit. I have no idea what I would have done without him and the health visitor there.

No make – up on thank god, otherwise it would all be down my face. Red eyes, puffy skin and hair a mess from over playing with it nervously. But this is what it looks like to be trying to hold it together when you feel like shite.

They did their tests on him and told me to get things ready to go to hospital. Bag packed and blue lighted to our local hospital. He had another episode in the ambulance and then when being assessed at hospital he had 3 more in 10 minutes. He was on an enforced breathing thingymajig and still stopped breathing so they were having to manually get him to breathe with it.

They made the decision to take him into intensive care and put him to sleep on a ventilator whilst awaiting a team to transfer him to a specialist children’s hospital.

Tube in for feeding, breathing, catheter in for peeing, tubes in for drips, xrays, head scans and lots of monitors later. Our baby is in an induced coma not breathing for himself. Whilst we are sat in the waiting room, completely helpless or able to do anything.

Suspected bronchitis or sepsis.

We are now being transfered to the specialist hospital in another ambulance. He will be admitted and in a coma for at least 3 days.

I feel fucking horrible. Were the screams last night other episodes where he stopped breathing? I kept saying to my husband “something’s not right, my guts telling me something is wrong”. Why didn’t I bring him in yesterday when his silent screams were making me cry. Why couldn’t I have kept my shit together and put on my big girl pants to deal with him rather than going into a panicked cry.

My poor baby. He’s 4 weeks old. This shouldn’t be happening.

My mum has come to our rescue (yet again) and is having the twins today whilst we head up go London with Max for his head scan and consultants appointment. Hoping that they will confirm everything is OK and that it is just a growth spurt. But you never know. Trying to stay positive!

We walked to the hospital and decided to get here early to have some lunch. End up at a lovely hotel, Burr and Co restaurant. I had a beetroot salad and glass of vino whilst my husband had the “best burger he’s ever had”. Going to have dome dessert, because why not turn it into a date, then head over to find our bearings at GOSH.

So we just had the scans and now have to wait for the consultants appointment. It’s only an hour and half but we’ve been waiting for 10 mins and it feels like forever already. Annoyingly she didn’t have any of the previous scan data so came back in to tell us what she assumed was good news. “It is slightly inflated but not much so I’m sure the consultant will run through it all with you.” Given that they were completely reduced and well under the normal region after birth. That isn’t really the great news she thought it was. My husbands not feeling too happy about it and now we are both just sat anxiously waiting to find out what us going on. In the cafe we saw some of the play areas they have, my twins would think they were on holiday here! They have a giant xylophone that wraps around the cafe. It looks awesome! (Excuse the reflection!)

We’ve just had our consultants appointment and it has gone amazingly. He said the scans look fine, that they would expect to see some increase especially in head circumference but that it should plateau in the next few weeks. He also looked at all his movements and was happy we as we are with them. He even managed to get his toes to move! Saying that he also said he didn’t see much of a difference in leg strength either. All of leg movements and reflexes worked though! Yes, yes, yes!!!!!!

My husband has instantly relaxed, we are both in that weird state of emotional but relieved/disbelief. On the train home now to hopefully see the twins before their bed time.

Have the dye test booked in for November, have been asked to book in another head scan locally if possible for 2/3 weeks and ask the midwife to check head circumference and just keep an eye on everything.

Plan of action sorted! Now get me a blood large glass if wine and a sofa to collapse on please!