My Premature baby

Toby in hospital

Ok so this wasn’t the post I intended to write but given the last week’s events I thought I would indulge myself.

My son Tobias James was born on the 4th July 2015. He was born at 33 weeks, almost 2 months early weighing a respectable 4lb. It was a very quick labour, so much so that the ambulance just made it to the hospital on time and the OH missed the birth as he was waiting for childcare for our little girl, it was 3 in the morning after all. Before he was born I remember thinking one day how horrible it must be to give birth to your baby only to have them rushed away from you should they be in the unfortunate position to need medical attention. I remember never wanting to have to experience that. But when my time came, I was prepared, I knew that at just 33 weeks he would need medical help and the doctors would indeed take him. I was just grateful to be in a position that there were doctors to take him away to give him the care he needed, the few seconds I had with him were a bonus. Waiting for the OH to arrive and for news on how my little boy was doing felt like an eternity. Although in hindsight not seeing what was going on was actually a blessing. The OH arrived to a room full of doctors around his tiny baby with what looked like wire after wire attached to him. It was a sight he was not prepared  for and I am not sure I would have been either. Toby required resuscitation not long after delivery, his SATS dropped and he needed intubating as his lungs couldn’t quite do what they were supposed to. The next 24 hours were emotional but Toby responded well to treatment so much so that the tube helping him breath was removed, although he still required oxygen to help him out.

Tiny tobesToby remained on the neo natal unit for 4 weeks, he started to make good progress and grew visibly stronger everyday. It was a hard 4 weeks as his (not so) older sister was at home and having to arrange care and leave her everyday to get to the hospital was hard and a confusing time for her. We had also just moved into a new home so her world as she knew it had really changed and she was too young to be able to explain anything to.

Whilst on the neo natal unit Toby required several different treatments to help him along his way and struggled with feeding and breathing. Nonetheless upon discharge he had made good progress. Sadly the next day however Toby had difficulty breathing whilst feeding and had to be re-admitted to hospital, needing further oxygen. Once again I found myself doing the 50 mile round trip and faced with the guilt of leaving his sister in the day and the guilt of having to leave my poorly tiny baby on his own in the hospital over night, it was an experience I wouldn’t wish on anyone. However a week later Toby was discharged. Hurrah.

Since being home Toby hasn’t had the easiest of roads. Several chest infections, bad reflux and a relatively common condition called Laryngomalacia (a floppy Larynx to you and I) causing him to sound like a steam engine when he breaths. Unfortunately these two conditions combined has meant his weight gain has been very poor and is still a tiny 8 1/2lbs at 4 months. He has been given a special milk which tastes like mouldy cabbage but which is designed to help with the reflux and weight gain. It was only a week ago as I working on a different post when Toby became quite poorly and was readmitted to hospital. He had been sick for over 24 hours not keeping anything down and after a fraught call to the out of hours doctor I was told to get him to the hospital asap. Fortunately his stay in hospital only lasted two days – although it felt like 2 years on a children’s ward full of screaming coughing babies but he has been home now for 3 days and is doing much better, long may it continue.

The last 4 months have been not been what I expected, there is much more to having a premature baby than I could have dreamed of. Although he is 4 months his corrected age is 2 months, a concept I struggle with. He has been a newborn for so long and we are only just getting those smiles from him that all parents crave and treasure. That being said I know that there are babies born much earlier than Toby and have a much harder journey. Anyone who has ever had to go through this has my utmost respect and my heart goes out to you. It is a mental and physical strain that I simply was not prepared for. I know it is not forever and I certainly don’t wish the time away but I do look forward to a day when my little man is stronger and happier. For the meantime however I take comfort in the smiles we do get. Toby if you ever do read this when you’re the big strong lad I know you will be – whilst your smiles may be few and far between when they do come, your whole face smiles, they brighten the room and it makes everything else OK, not to mention it’s bloody gorgeous! xxx

TOBY smiles

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10 Comments

  1. Nige
    November 9, 2015 / 1:33 pm

    A beautiful post I know exactly how you feel brought back memories of when my twin girls were born 6 weeks early nearly 4 years ago it’s a emotional rollercoaster on a neonatal ward impossible to explain unless you have been there hope is all working out ok

    • November 9, 2015 / 7:09 pm

      Thank you. Yes it can be emotional and feels like it lasts forever but it’s always reassuring when you hear from people who have been through it and come out the other side!

  2. November 10, 2015 / 6:21 pm

    That must’ve been so scary! My little one was born 4 weeks early and we had five days in but I got to stay with her until she started feeding properly I can’t imagine how it must’ve felt having to leave him every evening #twinklytuesday

    • November 10, 2015 / 10:36 pm

      Thank you. Leaving was definitely the worst part. But he’s home now and fortunately it’s just a memory. Hope all is well with your little one. Thanks for your comment ☺️

  3. Robyn
    November 10, 2015 / 10:32 pm

    It must be so hard to go through that with a second (or subsequent) baby also needing to be cared for. We were in the hospital for 3 weeks with our preemie, but fortunately for us he was our first baby. I really felt for some of the other families who were juggling family commitments outside the neo-natal ward as well. I hope your little Toby keeps going from strength to strength :) #twinklytuesday

    • November 10, 2015 / 10:44 pm

      Thank you so much. Yes in some respects having a baby at home definitely made it harder but Toby being my second did allow me to be a bit more chilled about the situation. I found I was on edge with my first all the time – simply because she was my first lol. If Toby had been my first and I had that experience I think I would of found it much harder! I hope all is well with your little one 😊

  4. January 5, 2016 / 7:48 pm

    Your boy is gorgeous and so is his name. A lot of what you said struck a chord with me, my baby wasn’t premature but had a congenital heart defect. I too had to leave my 2 year old to stay with him in hospital, what a guilt trip that is! And my baby had feeding issues too and is on the mouldy cabbage formula (and it makes his pops STINK!). Here’s hoping Toby continue to grow and get stronger in 2016 xxx

    • January 5, 2016 / 8:22 pm

      Ah thank you so much. Sorry to hear about your little one I do hope he’s ok. The cabbage formula is gross isn’t it. Toby’s been moved onto a different one now with extra calories to help him put on weight, it is much nicer – although it still has the same stinky effects as the cabbage food! Thank you for comment, I wish you and your family all the best! X

      • January 5, 2016 / 8:31 pm

        My baby (Zaki) was on Infitrini to help him gain weight when we thought he had reflux but now it’s Neocate. They all taste rancid but he seems to love the Neocate! Xx

  5. agentspitback
    January 8, 2016 / 12:33 pm

    He is absolutely gorgeous! It must have been a scary and difficult situation to be in! Good to hear that he is now home. I hope he continues to grow strong and healthy and smiley! Thanks for sharing with #abitofeverything