This week has probably been one of the worse of my life. On Tuesday I became a little concerned about Finley’s breathing which seemed to be quite laboured. We took him into hospital and during the routine tests they discovered a heart murmur. He was given an echo (an ultrasound examination of the heart) and it was identified that he has a hole in the wall between the left and right chambers of the heart, also known as a large ventricular septal defect or VSD.
The doctors at Durham had first diagnosed a Tetralogy of Fallot, a much more complex problem, but we are extremely lucky to live close to a world class children’s heart unit at the Freeman Hospital in Newcastle and on Wednesday evening we were transferred there and told by the experts that it was instead the much more straightforward and easily treatable VSD. Those few hours when the docs told us it was a ToF and we didn’t know exactly what the outcomes would be, was the worst few hours of my entire life. I felt like I was living in a waking nightmare. However, once we got to the Freeman and were told we were dealing with a VSD I became a lot calmer. A VSD is one of the most common heart defects and is relatively simple to treat. It still requires open heart surgery, but they haven’t had a child death from VSD surgery at the Freeman in several hundreds of operations. Things were well and truly put into perspective when we were on the ward next to children who had been delivered in the theatre and operated on within minutes of birth. I had one mother and son next to me who is facing several more operations after the one he’s had after birth. We both sat and cried together and when you looked in her eyes, you could see that poor woman had been to hell and back. Another baby on the ward was recovering from her third operation where veins from her head and legs had been transplanted to support her heart.
We actually felt a little guilty sitting there between those families, so believe me when I say that although I obviously wish this had never happened, I actually count us amongst the lucky ones that Fin has something that only requires one op. Of course we are still in for a very hard few months ahead. Fin is happy and healthy right now, but as he gets older his breathing will become more laboured and his weight gain will tail off. The mission we have now is to get as much weight on him as we can before his breathing gets too bad. They would like to operate on him before he’s 3 months old, and I’m in that weird place where I just want him to have the surgery and get better, but I’m also absolutely dreading it. We do have a fantastic consultant that has given us a lot of confidence in the future, the approach of the docs and surgeons at Ward 23 is quite simply that they will fix him. Obviously I’ve been blaming myself for this, along with him coming early, but the consultant was quite forceful when he said there is absolutely nothing I could have done to cause this issue. I’m not sure if there is a connection but my grandmother had a small hole in the heart as well.
So overall, yes we are concerned and worried, but in the grand scheme of things we are also very lucky that this problem is treatable with great outcomes. Now we are just trying to enjoy little Fin as close to normal as we can for the next few weeks :-)
Before that things where going well! It is a huge change when you have a newborn, I seem to be managing the sleepiness nights fairly well but it’s weird that I have absolutely no appetite (even before the worry). Plus it’s sometimes hard to find the time to eat!
Things like Innocent Veg Pots have been a lifesaver, as well as lots of smoothies!
I’m all about the quick and easy meals right now, and things like scrambled eggs can be made quite fast:
To keep my breast milk supply up I’ve been eating more calorie dense foods like avocado and coconut oil by the spoonful. I’m quite happy with my body post birth too. I weighed myself about a week after birth and I was 1.5 stones over my pre pregnancy weight and unsurprisingly this week I’ve lost 5 pounds of that so I’m well on my way to getting that off, although obviously I’d prefer not having lost the weight due to bloody stress and worry!
Early last week we had our first trip out to the shops with him and I was chuffed to be able to fit into some pre pregnancy pants, albeit some stretchy jeggings! We’ve also been out and about with Fin for walks in the pram:
He might have this hole in the heart but he’s a little fighter and we know everything will be ok with him being in the best hands at the Freeman Hospital. What I want to do now is live in the moment and try to tuck the worry away (as hard as that is) so we can enjoy this precious time with our gorgeous little boy!
Anyone else have any experience of themselves or their children with a VSD?
P.S I’m already hoping to do the Great North Run next year to raise money for the Children’s Heart Unit!
What a scary time for you! However, like you say he’s in the best hands. And he’s absolutely gorgeous xxx
So sorry for all of you – it must be so stressful.
I have a friend who had twins girls a couple of years ago, one of whom had this problem. The baby had heart surgery and not only did her heart recover fully but she is as tall, lively and strong as her twin sister.
Big hugs to all of you.
Thanks so much for sharing that Ana, every time I hear a positive story it lifts me up!
So sorry to hear that you’ve had such a worrying week Laura. You are sounding so positive though and I am sure that the doctors will continue to give you confidence as they work at fixing Finley’s condition. How great that you are already thinking about how you can give something back to the Heart Unit.
I must say you are looking fabulous for a Mother that gave birth just a fortnight ago!
Thanks Mary! Yes we are definitely planning a team effort for the GNR next year I can’t wait :-)
I’m so sorry to hear this Laura. My thoughts are with you and stay strong! Finley will push through – I’m sure of it!! :)
Thanks Mille :-)
Big hugs for you. The outcome sounds optimistic, but it must be so stressful for you. Sending positive thoughts your way.
Thanks Rae, yep it’s all very positive but it doesn’t stop you worrying x
Oh Laura, huge huge hugs to you both. I can’t imagine how stressful it has all been but your attitude to living in the moment and being positive about the future is fab. So glad that you’re in the best hands at the Freeman too. And it’s so nice to hear about you wanting to do the GNR to raise money for something close to your heart :)
You are looking gorgeous post birth! <3
Thanks Nicky :-) I know he’ll be ok but it doesn’t stop you from worrying although the Freeman is the best place in the world he could be x
I was so sorry to hear about this Laura, it sounds like it can be the most positive it can be and that Finley is getting the best care possible. And of course he has two epic parents loving and looking after him! xxx
Thanks Pip, it is as ‘good’ as it can be all things considering and we do hope that us giving him all of our love will help x
What a stressful time, but at least you have such a fantastic hospital close by. At least you have him at home and can focus on helping him gain as much weight as possible before his operation. I have not been through this obviously, but I have taught children who had that op when they were babies (parents often mention it on the entry form, just so we are aware) and they have all been perfectly healthy.
And what a lovely idea to raise money for the unit next year.
I also think that you look totally amazing being only 2 weeks after giving birth, having sleepless nights, all that worry and stress, and Finley looks such a cutie too- enjoy every second.xx
That’s so reassuring to know Maria :-) Yes we are definitely all up for a GNR team for next year, bring it on!
I can’t even imagine how hard this is for you. Take care.
And since you asked for good stories:
Thanks Victoria and thanks for that link!
So sorry to here you’re having such a stressful time. I just saw a woman on the GNR who was running for the heart unit at Freeman. Her son has had great care there since he was born. We are deinitely lucky to have such a great hospital in our region. You hear about families having to travel miles for treatment. Your little one is definitely in the best hands.
Thanks Anna, yep we are just so thankful to have that place on the doorstep, they are amazing. We are getting a team together to run the GNR next year as well, such an incredible place :-)
My thoughts are with you Laura… Sending love and light xxx
Thanks Lauren x
Shit Laura, sending all three of you so many good thoughts, it all sounds like such a horrible thing to go through, but keep your head up, you’ll all be ok, it sounds like you have great care :) lots of love
Thanks Catherine, yep it’s a horrible situation to be in but we know Fin should be alright thankfully :-)
Awwww he’s lovely Laura. Crossing my fingers it all goes smoothly for him. I am sure it will, as you say you have the best there to look after him.
Thanks Jacqueline, we are definitely lucky to have such a great heart unit on our doorstep :-)
Oh Laura, I can’t even imagine how terrifying that must have been for you… but I’m glad to hear that it’s nowhere near as bad as it could have been, and that your little guy is receiving some awesome care. Keeping both you and Finley in my thoughts and prayers <3
Thanks Amanda, yep we are so thankful that things aren’t as bad as they could have been xxx
I’m so sorry to hear you going through this Laura it absolutely sucks…hugs to all of you especially your gorgeous little boy he looks perfect x
Thanks Tam, can’t wait for you to meet him when we are next down Brighton!
I’m so sorry to read this Laura, poor Fin and you and James. I’m so glad you have such a fantastic facility nearby, sounds like Fin is in very safe hands.
Obviously I’ve not had children but I’ve done lots of stories on incredibly sick little babies and the amazing things surgeons can do to make them better. The work they do truly is magic and I haven’t met one consultant who doesn’t deeply care about the babies they’re treating. Fin sounds like a little fighter and you sound so positive and focused, he’ll be in the best position to have that surgery when the time comes xxx
You are absolutely right, some of the stories we’ve heard of babies in far worse conditions than Fin being fixed is very inspirational, we are so lucky really :-)
How terrifying for you all, little Fin is lucky he has such a strong, positive Mummy to take care of him! Glad to hear you have such good medics on your side too. Good luck to you all over the next few months, will be thinking of you. x
Thanks Lexi xx
Sending you lots of positive thoughts!! x
Thanks so much Claire xx
Inspirational wee man just like his mam!
If you, Laura or wee Finley like some healing, please do let us know.
Thinking of you all(I’m sure he’ll be fine with his awesome parents unconditional love & support:)
Hi Karina, are you able to do distance healing? I know he’ll be alright it’s just such a stressful time x
yep, spot on Laura(jus thought it may help ya a wee bit:) as I visualize you both!
What a scary time for all of you! Glad to hear that little Finley is in good hands. Keeping you in my thoughts.
Thanks so much Judy x
I’m so glad that Fin’s heart problem is resolvable. The Freeman is basically the best place in the country, so I’m sure he will receive the most amazing care. I know it won’t make a difference, but I have to reiterate that what your Consultant said is true: NONE of this is your fault. You’re an amazing Mum and Fin is as lucky to have you as you are to have him.
You have such a glow, even with all of the stress and so soon after giving birth!
Huge hugs to you all.
Thanks so much Jess, it’s been the most bloody awful week but when I walked into the Freeman and the consultant sat us down and explained what we were dealing with I felt so much better. We are truly blessed to have a place like that for his care xx
Oh, gosh, how stressful – my thoughts are with you all, Laura. Glad to hear that its something fixable and it sounds like you have a great team of doctors.
On a lighter note you’re looking amazing and glad to hear that you’ve been able to have some normality with everything going on. x
Thanks Lily, I’m glad I look half decent all things considered ;-)
Thinking of you all Laura, I’m so sorry to read this. You sound so positive (which is amazing considering what you’ve been through this week) and I’m glad you have a good children’s unit nearby. xx
Thanks Pop, I think I’m positive because I have to be if you know what I mean, but also because the situation is so much better than it could have been, we are definitely lucky to have that heart unit nearby!
What a scary week you have had! So glad to hear that the doctors are so onto it and fin is in the best hands. Will be sending lots of positive thoughts your way for your little fighter. Take care xx
Thanks so much Bron! x
That must of been so stressful and worrying for both of you. He’s obviously in really good hands, great that you are so close to such good care. Sending you all the positive vibes.
Thanks Lauren, we are so lucky to have such a great heart unit nearby, doesn’t stop you worrying but it does make things a little easier x
As if having a baby isn’t stressful and daunting enough! So glad he’s getting better and so sorry you guys have been through all of this. Sounds like he’s in great hands though with the hospital.
I’m not usually a baby person, but he is adorable!
Thanks Anna, he has been winning ladies hearts everywhere! We are so lucky to have that hospital so close by :-)
Oh Laura as if it wasn’t enough just having a newborn baby now this as well. It’s a lot to take in and cope with but you seem calm and with this approach and excellent medical care and advice this will set you in good stead. He looks so serene and lovely. My daugher Jazzy was a full term twin and didn’t weigh much more than Fin. You look great too the weightloss is incredible after a baby. I can remember after I had Jazzy and Joey I said to the nurses I had lost at least two stone. Then I started feeding them and the scales fell through the floor. I was also starving the whole. All these realisations help you along with getting through the nights. As long as you get a bit of sleep you can cope, you’ll be amazed how much stamina when you have children you have it’s quite an eye opener. I’ll be thinking of you.
Thanks so much Caroline, yep I need to make sure I keep eating well and keep my breast milk supply going strong!
Awww sweet little Finley – I’m sure that was so scary for you, and still is! Definitely let us know when his surgery is and I will keep him in my prayers!
Thanks so much Katie!
Sorry to hear this, how very scary for you! I can’t begin to imagine.
My mam is a nurse at Durham and always speaks very highly of the Freeman, you are absolutely in the best hands there.
Thinking of you xx
He is so gorgeous Laura! I am so glad that it is a much less serious problem than what you were first told.
We know this is a scary moment for you. So frustrating, isn’t it? But don’t let it get to you, be positive, take care of yourself and your lovely baby Finley! Keep in mind that this heart surgery is now a quite regular procedure, a very successful one, and you can trust it will all be OK. You have the bonus that a great hospital is taking care of sweet Finley.
Just to let you know, the daughter of a friend of mine went through the same experience and my friend was devastated but all went extremely well and today his daughter is a beautiful and healthy 21 year old woman living the most amazing life…
I’m behind with my blog reading, so catching up on all your news and drama has been shocking! I’m so sorry to hear you’ve hit a stumbling block, but that’s all it is, things will be getting better (and easier) before you know it. You’re super strong, so I’ve no doubt that Fin is too :)
Hi Laura, bit of a delay but I’m just catching up… So sorry to read what you have been through and hope and pray for you all that things are getting better and Finley’s weight is on the up xx. You’re a very well thought of person and I think I can speak for all you followers/readers that we wish you Good Luck with everything xx