Baby Two: Five Months Old

Our lovely Maxi is five months old this weekend – this is the first time I’ve done an update on him separately from his sister’s but she turns two next week so I’ll be doing a special post or two on that and then I’ll be reducing the frequency of her updates, probably to just two a year, although I’ll clearly still mention what she’s up to in other posts I write.

But back to Max, out of interest I just looked back at Alexandra’s five month update (not in a ‘comparing to see which child is better’ way but to see what she was up to at this point). She was majorly interested in hands and feet – Max hasn’t found his feet yet but has spent most of the month chomping away on his hands.

Their routines are roughly the same except she slept in a little later in the morning and went to bed ever so slightly later – and she was having a whopping 210ml five times a day, compared to Max who has 150ml. However it’s importantly to remember Alexandra’s feeds were all formula and only one of his is, and everything I’ve read suggests breastfed babies consume less. Plus he’s smaller too.

So what is he doing this month? There’s a lot of chatting and smiling. He loves to interact and is a real people watcher. He’s generally very contented! Max is trying to roll but hasn’t managed it yet and his head control is getting stronger by the day.

His doctor at our local hospital is very pleased with him and we’ve now got a weaning plan in place, which I shall share the details of once we get to that point.

Overall he is just the most delightful little thing to have around and he’s completely added to our family on the best way possible!

Harriet, Alexandra and Max x

100 Days Old

To my incredible son on your 100th day in this world,

What a 100 days it’s been. We knew from the word go things were unlikely to be simple. Two lines showed up on the pregnancy test on Friday, September 2, just days after your sister turned one. Your dad and I stood in our bedroom for a while just looking at each other in shock.

We never had a conversation about what we would do. From that second you were my baby and we would take on the risks to get you here safely.

The next few months were filled with worry. We tried to carry on as normal and in general you gave me a really easy ride during the pregnancy with you – much more so than your sister who made me feel really poorly most of the way through. But sometimes we look at each other and panicked. Especially in the latter weeks, I spent so many hours lying awake in the middle of the night contemplating what might happen.

We reached 24 weeks and while we could breath a little sigh of relief that we had a chance at a ‘take home’ baby, utter fear took over every time I thought about what might happen in the weeks after your birth. Fast forward another eight weeks and there was a hospital admission and talk of early delivery.

I sat for ten days in hospital not knowing if I’d be coming out with or without you, pregnant or not pregnant. There was still a risk at this point your dad would be taking you home on his own. We avoided induction and even booked in a date for 37 weeks. But of course we didn’t make it that far and instead they decided at nearly 35 weeks we needed to get you out.

Holding you in my arms for the first time was the most empowering moment of my life. Many, many medical professionals helped deliver Alexandra but I gave birth to you without any extra assistance and I felt so strong in that moment. Looking at you it was like everything fell into place. A little hole in my heart was filled in and everything was complete.

I made your dad go with you up to the ward while I had to stay downstairs for a while. And then came the explanation that you’d showed a couple of worrying signs so you’d been taken to NICU. How could we know then the journey we were in for? You spent ten days on the unit with the incredible highs – getting to cuddle you for 15 minutes each on day four, being extubated both times, starting tube feeds. And the crashing lows – being told you needed to be ventilated, hearing your pained cries as you struggled to breath, not being able to see your eyes for a week while you were having jaundice treatment, two lung collapses.

And then on day ten we had our answer. What was going on apart from the sepsis, pneumonia and jaundice. Congenital diaphragmatic hernia. Something I’d never heard of before but is now a common phrase I use. My baby boy had a hole in his diaphragm. It was action stations from then on as you were transferred to another hospital for your surgery.

An operation you absolutely powered through like the brave boy you’ve been since day one. Even the doctors couldn’t believe how well you recovered, getting home a week later when most babies would still be on a ventilator in intensive care.

And so we took you home and began our journey as a family of four with our bouncy active toddler and our tiny little boy. But the time we had at home getting to know one another was to be fairly short and you were less than six weeks old when you were admitted to our local hospital this time.

We kept calm at the time but looking back that night was terrifying. You were becoming more and more pale and cold and listless. The doctors had to abandon a planned lumbar puncture when you spaced out for a few moments. There was talk of transfer to a specialist hospital, of more surgery, of a potential liver condition.

But of course three days later we discovered the problem was an extremely severe dairy allergy. We were relieved in a way to finally know what was wrong with you and how we could make you better. So began a long process of getting dairy and soya out your system and once you were back on full feeds we had our happy baby boy back. I was so tired at this point having been up through most of the nights as you were so upset from being restricted with your milk, plus the machines and trying to express and a horrible camp bed. Your sister and daddy were down the road at home in an attempt to keep things normal for her. It was awful being separated again so after five days taking you back home was wonderful.

Since then you’ve dealt with so much more: reflux which we were told to expect you to have given your CDH, brain scans, X-rays, appointments. You’ve finally begun putting on weight and actually reached the 0.4th centile whereas before you weren’t even on the graph.

We don’t know what the future holds for you, whether anomalies on your brain scan will cause developmental issues, whether your dairy allergy will be lifelong, whether you will reherniate and face more surgery. We watch you every day for signs of your breathing deteriorating. I read the ingredients list three times on everything I eat just to check I’m
not exposing you to dairy.

But for all of the drama and tears and fears and hospital visits, I wouldn’t change it for the world. Your smiles are just incredible. Your cuddles are wonderful. Watching your bond with your sister grow each day is just the best thing ever.

Alexandra had to fight to get here safe and sound. Never did we imagine how hard you’d have to fight both in the womb and for the last 100 days. Miscarriage and stillbirth rates for APS sufferers are appalling, and CDH only has a 50 per cent survival rate so even without all your other complications, you are a miracle.

You and your sister have taught me so much. I never realised how calm, composed and strong I could be in a life or death situation. I never realised how intensely I could love another human being. I never realised how protective I could feel. How selfless I could be. How utterly devoted to a family I could be.

As I write this you’re sleeping on my chest and it feels like you were always meant to be here. I hope you never stop wanting to cuddle me. I hope you never stop smiling as beautifully as you do now. I hope whatever challenges life throws at you, over and above those faced by others, you continue to tackle them so bravely. I am so proud of you and I’m so thankful you came into our lives. You were meant to be Max. Meant to be.

Momma x

Max’s Story: Part 3

  1. This is the story of Max’s recovery and discharge from hospital. To read the earlier parts of the story, you can click on Part 1 and Part 2.

Day 10 –

A 2am call from a withheld number is never going to be good, especially if it’s about one of your children. I’d just got up to express when the phone rang and I knew instantly that Max’s lung had collapsed again. He’d been put back onto CPAP as he needed more assistance with his breathing and a X-ray in the early hours revealed his right lung had gone for a second time. The doctors were scratching their heads, wondering why it had happened.

I got about an hour’s sleep and returned downstairs to be greeted with the words congenital diaphragmatic hernia. A closer look at the latest X-ray showed part of Max’s bowel and liver had made their way up into the chest cavity and on examining the X-ray from when the initial collapse had happened, the doctors realised his liver was also in his chest then.

An ultrasound confirmed there was indeed a hole in our little boy’s diaphragm. From then on the day seemed completely hectic. It was arranged for Max to be transferred to the Children’s Hospital across the city and luckily they had a baby who needed to come back to the unit we were on so the swap was arranged for that afternoon.

I packed up the stuff in our parent accommodation and Dylan arrived and very quickly after the KIDS team arrived with the ambulance which would take Max to his new hospital. They explained the whole process and talked us through what would happen during the journey. Max was given medication to keep him sedated during the journey, although the little monkey decided he wanted to be wide awake so they had to give him extra doses to get him to drift off!

We went into the ambulance – with Dylan following us in the car with all our stuff – and after a journey of about 20 minutes we arrived on the PICU.

The difference between the two wards was incredible – from a little room with three other babies in to a huge open space with 31 beds for children of all ages needing intensive care. It was like going from a little airport like East Midlands to walking into Heathrow.

That afternoon he had numerous tests and scans and then we were told he’d be likely to have his operation the next day.

Day 11 –

Overnight I’d had to go and be checked at our original hospital as I wasn’t feeling well but luckily they had let me out to come back and be with Max. I stopped that night in a small room off the ward but was told in the morning there was a room for us at Ronald McDonald House just around the corner from the hospital.

Then the day became a process of waiting. Around lunchtime they confirmed they’d be taking him down for his operation at 3pm. It was set to take three hours so Dylan and I used the time to have some rest and grab some food.

At 6pm we received a call from his nurse to say he was back and everything had gone well. It was a huge relief although we’d felt quite positive from everything they’d told us before that it would have been. Unfortunately we just missed the surgeon so we didn’t get much more information than that they’d managed to do the surgery keyhole and hadn’t had to open him up so that was excellent.

Day 12 –

A chat with the surgeon confirmed when they had pushed Max’s liver back down into his abdomen, there had been enough diaphragm to stitch up the hole rather than needing to patch it. The overall recurrence rate is 20 per cent but this is significantly reduced when they’ve been able to stitch rather than patch it, so that was obviously a huge positive.

Everything seemed to be going well through the day and they were able to reduce his oxygen and pressure on the ventilator throughout the day before finally being able to extubate him around half seven in the evening. Alexandra and Dylan were stopping in the Ronald McDonald House that night so he was able to go over and see Max while I stayed in the room with sleeping Alex. It was incredibly hard to juggle things for Dylan so I was glad he’d been able to spend that time with his son.

Day 13 onwards –

The following day, less than 48 hours post op, Max was transferred to the neonatal surgical ward to continue his care there. The main focus was on getting him feeding so that he would start putting on weight and come home. Once they were happy with how much milk he was having every day and the fact it was making its way out the other end then that was a big tick in the box.

There was also plenty of talk about a brain scan he’d had which showed a small (around 4mm) area where there was either a bleed or a lesion. It’s in a part of his brain on the left hand side which controls movement and posture in the right hand side of the body. As of yet we don’t know what effect, if any, this will have on him. It could be as he grows that other parts of the brain will take on any function lost as a result of the bleed, or conversely it could get worse. So he’ll need regular monitoring and we’re awaiting a repeat brain scan.

However it’s not something they seem overly worried about and the lack of urgency about repeating the scan is reassuring as I’m sure they’d have been sending him for tests left, right and centre if they thought it was going to be a massive problem. Really it’s just a case of waiting and seeing – and we’ll have regular contact with the team at our local hospital to ensure any developmental issues are picked up on.

When our tiny little boy was 18 days old, the doctors on the ward round decided that he was truly well and fit to go home. After an (always) agonising wait for most the day to be discharged, we were finally on the way with our precious bundle in his car seat.

And so the adventure starts…

Harriet, Alexandra and Max x

Plans for Baby 2: Routine

It’s inevitable when you’re looking at becoming a parent that you start thinking about all of the things you will (and won’t) do and what your preferred options were. Now that we’re set to become second-time parents (fourth time for Dylan, but second time together), in some ways it’s easier to plan because you know what worked and what didn’t work but you also have no idea how your baby will differ from the one you’ve already been through all of this with – you know what they say about the best laid plans!

Anyway, I thought I’d share what our plans are with Baby 2 – things like weaning, feeding etc. But first up: routine.

Routine is one of those areas where there’s such a huge variety of opinions, from people who think you should probably buy your child a calendar while they’re still in utero and plan every second of the day out to those who have no plans to introduce any kind of routine.

With Alexandra, we were much closer to the second option. Luckily, she’s a very adaptable little thing and so she’s never really thrown out by going out at different times and having different things to do on each day. She just goes with the flow and (besides getting grumpy if she hasn’t had enough sleep – don’t we all!) as such we haven’t ever had to say ‘we can’t go out in the morning because Alex needs a nap’ or anything like that.

When she was little, we let her get into a sleep pattern which happily ended up suiting all of us. It means she goes to bed a little later than most of the other toddlers we know, but that also means it’s not a problem that we generally don’t eat til half six and it gives Dylan more time with her in the evenings. She likes to nap around 11am but if we’re out or she’s at nursery she generally won’t sleep now, but then she’ll go down for longer in the afternoon.

With Baby 2 we’ll probably do the same where we try and have a less structured routine. I’ve heard a lot of people say second babies just go with the flow so that’s reassuring. Because I generally use Alexandra’s nap time to work (slash occasionally just sit and look at Instagram) it won’t matter too much if their naps don’t synchronise in the early days. Alex will carry on going to nursery two mornings a week during my maternity leave so I guess it would be good if he was asleep for at least some of that time so I can clean the house, do laundry etc but if not we will just have to work around it! I’m also hoping to use those two days to run errands that will be harder to do with a toddler AND a baby.

Overnight, it would be EXCELLENT if he decides to sleep through early on like his sister did, but part of me is expecting a horrendous sleeper to make up for how lucky we were last time. Dylan is convinced the fact that we did certain things helped Alex sleep through earlier so we will be doing them again (and I guess that will be the test of whether they had an impact or not!): those things were mainly about establishing the difference between night and day so whereas we’d talk to her and interact with her during feeds in the day, we wouldn’t really interact with her during night feeds (unless she was upset obviously! We’re not totally mean) and we’d just have the en-suite light on with the door open enough for us to see what we were doing, rather than turning a light on in the bedroom, which hopefully reinforced the message that we were being quiet and going back to sleep!

Essentially, Baby 2 will have the chance to set his own routine just like Alex did, but with the vague hope that they marry up in some sort of way otherwise I’ll be stuck in the house rotating which child is asleep at any one time! Wish me luck.

Harriet, Alexandra and bump x

Two Under Two

The brighter and more mathematically minded among you will have worked out by now that Alexandra doesn’t turn two until late summer and we’re due our second baby in the spring, which means we’re soon joining the magical ‘Two Under Two’ club. I say magical, more apt words could include terrifying, scary or frightening.

There is probably no age gap in the world which is perfect and every family (and every child) is completely different so in reality, what works for one set of parents probably won’t work for another. I think it’s pretty much universally accepted though that popping out two tiddlers in less time than it takes for us to orbit the sun twice is either really brave or really stupid. We’ve been very open about the fact Baby 2 was a complete surprise to us, and I genuinely don’t know what we would have done had we planned to have him in terms of the timing (I suspect Alex would have been closer to two by the time we started trying but we’ll never know). As it was I was five weeks pregnant when we found out a few days after her first birthday that she was set to become a big sister, add in a planned early delivery on the cards for 2 and you’ve got yourself an estimated 19 month gap.

There are some positive things about Two Under Two (there are, right?): you don’t get used to more independence and no nappies and then have to go back to it all again, they’re more likely to enjoy the same things as they grow up because they’re similar ages, fewer years til both are in school and you can consider your career options, everything you learned with Baby 1 is fresher in your mind.

There are also some things which, quite frankly, scare me: what the hell do you do if they’re both crying at the same time, the likelihood of Baby 2 being a good sleeper considering we were so blessed with Alex is slim – can I cope with that on top of the daily demands of a toddler, Baby 1 is likely to try and climb on/poke/otherwise maim her brother if I leave them alone for even a second and most of all: two turd-factories to change all day, every day.

I’m sure that you just cope. Before I had Alexandra I just didn’t get how it all worked, even after I had her it took a long time before I was fairly confident both of us would survive the day until daddy got home. I’m sure the TV will be on more, I’m sure the hoover will be out less and I’m sure there will be more than one day where I phone Dylan to have a little cry even though the extent of how much he can help when he’s 20 miles down the road and working is very minimal. But I’m also fairly sure that we’ll get along okay.

Harriet, Alexandra and bump x

Take Two: The First Trimester

I’m writing this at the start of November at 14+6 so almost a week into my second trimester, but due to ‘announcement’ timings will be a few weeks further on before it gets published, just to clear up any confusion if I’m referring to being further along in other posts.

Back in April 2015, I wrote a blog about how I’d found the first trimester of my pregnancy with Alexandra (you can read it here). In it, I spoke a lot about tiredness and sickness and I sound generally like a very grumpy pregnancy lady (I was about 18 weeks when I wrote it). So when it comes to an update about this pregnancy and how the first trimester has been, it’s refreshing to be able to confirm it’s completely different!

We found out at five weeks, around the same time as we confirmed we were pregnant with Alex and, as before, I started feeling quite sick around that time (including a few actual vomit episodes. If you’ve ever been crouched over a toilet bowl chucking your guts up with a toddler stood next to you crying then I feel your pain!). I thought here we go again! But actually about a week later I stopped feeling sick and I’ve barely vommed since. Hurrah!

Food wise I haven’t had weird aversions like last time. Mostly with Alex I was disappointed I suddenly hated the thought of Diet Coke despite drinking it religiously beforehand. I’ve never actually gone back to drinking it so we don’t have that to contend with now.

I am always tired of course, but show me a toddler mom who isn’t! Luckily I’ve definitely got more energy than last time round. I don’t know whether it’s a baby gender thing, just because it’s a different pregnancy, because I’m on meds this time, or just because life decided I didn’t need two shitty first trimesters, but whatever it is I’m full of gratitude.

Obviously the first 14 weeks were a little more medicalised than last time. With Alexandra by this point I’d had one booking in appointment and one scan, with baby two I’ve had three scans, two booking in appointments, two haematology appointments, one cardiology appointment, one echocardiogram, one ECG, one rheumatology and obstetrics appointment and about ten blood tests. And this list is set to increase weekly during the second trimester. But clearly for good reasons.

 There’s not a whole lot else to report but I’ll definitely update at some point during the second trimester.

Harriet, Alexandra and bump x

Time For Another

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I’ve written a bit before about my feelings about not having another baby (here). I just feel like I haven’t come to terms with it and so maybe writing a bit more about it might help with that process?

When I wrote last time, I had spoken to the haematology and rheumatology consultants but not to the cardiologists. When I met with them earlier this year they broached the subject of another pregnancy (it’s always the doctors who bring it up, never me!) and basically if I had to summarise the look of ‘don’t do it, you and probably the baby will die, it’s the most stupid idea ever’ then it would be the look both consultants pulled. Basically the warfarin I take to stop my blood clotting can be swapped for different medication which stops clots (so I’d have a daily injection throughout pregnancy and for six weeks after) but the heart medication I take can’t be taken while pregnant and there’s no safe alternative. So although my heart operates at around ten per cent less than a normal heart, which is only classed a mild cystolic disfunction, there’s no way of knowing how much damage nine months without medication would do to it. And of course if I had another episode of CAPS then I’d basically be screwed because of already having a slightly dodgy heart.

To put it bluntly, they can’t put a number on it but it’s more likely than not that either me or the new baby wouldn’t make it. Obviously I have a child and an almost-husband and family and friends to think about when I consider the risk to my own life. But for me the thought of actively trying to conceive a baby who has more chance of dying than living is scary. How would you cope with the guilt if it didn’t survive? There’s a difference between taking a risk with your own life and doing that with a tiny baby’s life. And of course Alex is a huge consideration in all this, the last thing I’d want is for her to be adversely affected by any decision we took.

I know all of this, when I think about it logically there are so many reasons it’s a truly terrible idea. But still it doesn’t sit comfortably with me yet. I can’t feel okay about it yet. When I hold my baby nephew sometimes something just catches in the back of my throat when I think about the fact I missed Alexandra being that age, and I’ll never get the chance to do it again. When I see people on forums who had babies in the same month as I did either planning to or actually falling pregnant again, I feel a little twang of something. There’s a huge physical need in me (can you feel your biological clock?) to have another baby. It’s something I feel much more acutely than I ever did before I had Alex.

Alexandra was the most wanted baby ever and it’s a miracle she’s here and alive and healthy and just absolutely wonderful all round. It’s even more of a miracle that I’m here to enjoy her. I think this a hundred million times a day. But I can’t help thinking about what might have. How might life with two have been different. Would we be trying again yet? Would we have got pregnant really quickly again? Would I get to be fully involved in (and maybe even enjoy) the newborn stage the second time around?

There’s so many questions that I can never have the answers to and there’s a whole lifetime of expectation that I have to drop. I just have to move on and get over it and deal with it. But one of the things making that even harder is the wealth of people queuing up to ask me when we’ll have another. Obviously those very close to me knows but anyone outside of that immediate circle seems to be popping up right now to ask the question. It’s like a timer’s gone off and now my baby is ten months old everyone wants to know when number two will be here.

I usually just give a short ‘there won’t be a number two due to medical advice’ sort of answer but every time it breaks my heart a little bit. I can’t even begin to imagine the pain of a couple unable to have children or who’ve lost a child. I wouldn’t ever compare myself to them. But this hurts too. It’s very real for me, the sadness, the sense of losing out on something I’d almost taken for granted I could have. I try to remember there was never any guarantee of number two but I know a ‘no’ is not the decision I would have come to.

The trauma of what happened to us has become much more acute over the past couple of months and I feel much worse about it than I did in the immediate aftermath when I was fighting to get physically better. It will take a long, long time to heal but my worry is I will never fully accept the decision my illness made for us about not having another child.

Harriet and Alexandra x