I don’t know how I feel

If you’ve read the final part of my birth story, then you’ll know that Freddie’s entrance into the world was not without its ups and downs, namely that he was born with pneumonia. By the time we left hospital the doctors weren’t sure what had caused it, but the infection had cleared up well. A few weeks later I received a call from the consultant who had seen Freddie when he was first born and had diagnosed the pneumonia following an x-ray: he had reviewed Freddie’s notes and the follow-up x-ray that was taken on day 3 and thought that Freddie had a cyst between his left lung and his stomach. A check-up was booked in for a few weeks later, but he wanted a pediatric respiratory specialist to look at the case anyway.

Tom and I agreed that whatever was wrong with Freddie must be minor and was probably just something he could live with, so we weren’t worried. I took Freddie for his check-up with the consultant, feeling confident that he would say there was obviously nothing wrong with him and we could be signed-off. Freddie did a great job of proving his lungs were working very well by screaming his head off through-out his examination, but the consultant maintained that Freddie still needed to see a specialist.

Begrudgingly we took Freddie to Birmingham Children’s Hospital this last Thursday. I was convinced that the doctor would take one look at him and declare that he was absolutely fine and nothing further needed to be done, that the trip would be a waste of time, but at least we knew he wouldn’t have to go through the experience of being sedated for a CT scan, something that had been suggested earlier on. Looking back now, I’m glad I didn’t let my ‘mummy knows best’ attitude take over my sense completely.

The doctor looked Freddie over thoroughly, gave him another x-ray (that was fun…), checked his oxygen level, weighed and measured him and took a full history of his short life. For us, everything pointed to normal – but I suppose that’s why we’re not pediatric respiratory specialists, and the doctor is. You see, it turns out that Freddie’s diaphragm is slightly raised on the left side, meaning that his left lung is smaller than it should be. The reason he contracted pneumonia whilst still in the womb is because his smaller lung couldn’t absorb the amniotic fluid babies swallow when they’re practicing their breathing before birth and it made the lung damp, which lead to him not being able to breathe properly.

Freddie is doing incredibly well considering his reduced lung capacity, in fact the only way he has been able to maintain his perfect weight and growth is because he has been feeding much more than a baby without his problems would need to. Basically, he has needed extra calories in order to keep up, which explains his incredible appetite. (A few of you reading will know about some of the feeding problems we’ve had and so will understand what a light bulb moment this was for me. My journey with breast feeding is a whole other post in itself though, so watch this space.) However, the doctor said that his breathing is a little more laboured than it should be, so he is struggling slightly.

The conclusion is that our poor baby boy needs to have an operation to lower his diaphragm. Tom and I are still in shock about this outcome and although it sounds completely stupid to say it, I feel really guilty that I wasn’t able to grow our baby perfectly. I know, I know, but that’s just one of the emotions going round my head at the moment.

The surgery will be keyhole and because babies are still growing so much at this stage, it will hopefully mean that his lung will then fully develop to its full size. We don’t really have a choice about this as if he didn’t have the operation, he wouldn’t be able to exercise fully and could have problems with chest infections as he gets older as he wouldn’t have the full capacity to fight them off. Neither of us want Freddie to not be able to run around or do sport, or for him to have to take antibiotics every winter, and we know that is much better for him to have this done now while he won’t remember it.

So where are we now? I will have to take Freddie back to Birmingham at some point in soon to have an ultrasound to confirm the diagnosis, then we will meet with the surgeon to discuss the surgery in detail. It’s not an urgent procedure, which should mean that we’re able to schedule it for a time when Tom can get time off work, but it will have to be done before he turns one.

I really just don’t know how to feel about this outcome – I was so convinced there was nothing wrong with him. Obviously I feel shocked and scared about the idea of our baby being in hospital again, worried about how to look after a baby who’s had an operation and anxious about how tiring it’s all going to be. But I’m also pleased that we’ve caught this so early, as, if it hadn’t come up until he was 2 or 3, there would be no point in doing the operation as his lung wouldn’t grow and he would just have to live with reduced lung capacity. I also feel hugely relieved that I’ve got an answer as to why Freddie feeds SO much, as there was always something in the back of mind telling me that it wasn’t normal. Overall, I kind of just feel a bit stumped and down in the dumps, to be honest. Even though it’s incredibly selfish to say this, it just doesn’t seem fair that we have to go through this.

Not wanting to end on such a downer, here is a cute picture of my gorgeous little man:

F 15 weeks

8 thoughts on “I don’t know how I feel

  1. Beautiful pic of Freddie.
    So sorry he and you have to go through this but we’re here for you every step of the way x

  2. Oh Esme, it must have come for such a shock for you. I can completely and utterly understand your reaction – in fact you sound a lot more together than I would be if something like this came as a bolt from the blue about Olive. It will take time for it all to sink in, which is totally natural – you can’t control how you feel and the worry is completely understandable. Don’t beat yourself up for however you’re feeling. Just keep talking between the two of your and arm yourselves with as much information as possible. At least you have answers to some feeding issues and how great that it’s been diagnosed as early as it has.

    If there is anything I can do whether it’s lend an ear, send a supportive email or whatever. Please do reach out and get in touch.

    Lots of love and hugs to the three of you xx

  3. Hi Esme

    I think he is perfect, please don’t feel down. You are incredibly lucky to have such a beautiful little boy. Also it sounds like his problems will soon be resolved.

    A good friends little boy has cerebral palsy, after being born at 25 weeks, life can be trying at times.

    Sending you lots of hugs.

    Stay strong.

    Katie xx

  4. They seem so delicate, tiny and fragile … But they’re tough little things. Only a small op and it’ll all be fixed. Not to worry and be strong Esme xx

  5. Oh Esme… I know EXACTLY every feeling you have described in this post… It is SO hard to accept when everything in you is screaming “they are fine, just leave them alone”. In our long journey with Heidi I have learnt to be grateful for the hidden blessings and it is wonderful to see you are finding the gold dust amongst the heartache. Thinking of you so much, and so glad there is something they an do. Sending much live your way… Claire xx

  6. Poor you, it sounds like you’ve been dealing really well with some pretty difficult stuff. Hope everything goes great with the operation. xxx

    (PS that pic is adorable, looks like he has so much personality already.)

  7. Oh I am so sorry, but at the same time, it is so lucky that they found this on time. I will be thinking and praying for you and I hope everything will go fine, both surgery and recovery.

  8. Oh Esme, I’m so sorry. Thoughts, prayers and positive vibes being sent your way from me and the girls. Always here if you need anything, usually at 4am ;)

    It goes to show how clever Freddie’s little body is though that he knew to eat all that extra to compensate. It blows my mind.

    And remember, although it is natural to blame yourself please don’t. You’re an amazing mummy and he’s a lucky, lucky boy.

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