I can hardly believe it’s almost 8 weeks since Finley arrived! It has been tough at times with his health challenges as I’ll talk more about in a moment, but other than that it’s just been wonderful! He seems to be developing more every day, a little smile or smirk, lifting his head up, a funny new sound and despite his heart problem he has gained weight pretty well. He’s gone up a clothing size which is awesome! Thanks to a comment from a lovely reader, we got a Babymoov Cosysleep which has been fabulous for helping him to feel snug in his moses basket. It also works wonderfully for co-sleeping as he can’t roll out of it.
Last week I started reading Mayim Bialik’s Beyond the Sling which I’m really enjoying. It’s certainly reminding me to continue to trust my instincts in how I take care of Finley. I’d definitely recommend it to other parents of young children.
I often just look at Finley and can’t believe James and I created such a stunning little boy. Every where we go he gets comments on how adorable he is. He loves taking baths with his daddy and snuggling into my chest after a feed then falling asleep in my arms. Breast feeding is something I absolutely love, which I’ll be blogging about next week too. We are so blessed to have him and it feels like he’s always been here with us. I can’t wait to see him grow and develop more and more as he gets older!
As I’ve blogged about before, Finley has congenital heart disease in the form of a VSD (Ventricular Septal Defect) basically a hole in the heart, and lucky for us, a treatable and fully curable defect. Last week the cardiac nurse visited us and felt that Finley was ready for his op so we were admitted to the Childrens Heart Unit at the Freeman Hospital. The plan was to top up Finley’s breast feeds with high calorie formula via a feeding tube to bolster him up ready for his surgery. As his heart and lungs work harder than a normal baby, he struggles to gain weight as he should. On Monday morning we were understandably extremely emotional as we got Finley prepared for his op that was scheduled for 8.30. He was nil by mouth and in his little theatre gown when the op was put back due to the NHS strike. Then, 40 minutes before he was due for surgery again, it was cancelled because his 1-2-1 nurse in the ICU has been sent home sick.
We were so angry and disappointed. As much as we were obviously worried about him going through surgery it had also felt like there was a light at the end of the tunnel. Later that afternoon we had a meeting with one of the lead consultants who had a different view to his treatment. The op is very low risk, but that small risk can be minimised even further the more weight the baby gains. The higher weight the baby, the better the recovery as well. Since Finley had been started on some medication and formula top ups via bottle, his weight gain had improved, however with the feeding tube it was really going up and he was also in otherwise good shape, so the consultant put it to us that we could take him home with the feeding tube in and top him up at home so he gains more weight. It was a very hard decision to make (and to be honest one I don’t think we should have had to make ourselves) as he was scheduled in again for surgery the next day. As much as James and I just want to get our baby fixed, I also felt that we’d ever forgive ourselves if something did go wrong that could have been avoided if he had been given the time to gain more weight, therefore we agreed to go home and mix breast and tube feed him. I learned how to administer tube feeds and we were discharged yet again to try and get even more weight on him. It was crazy to go from imminent surgery to being told to go home within a day!
I had really resisted tube feeding at home as part of me just doesn’t want people to see him with the tube down. I didn’t want any photos taken of him like that either, however we are looking at anywhere from two weeks to two months before he goes back in for the op, and what I’ve come to realise is that this whole thing is part of his story. It’s part of his life and will no doubt be a tremendous source of strength in the future when he realises what he has gone through. Who am I to deny him understanding that part of himself by seeing photos in the future?
He still looks cute as hell with the tube in anyway of course!
Our short stay at the Childrens Heart Unit reminded me how lucky we are yet again as a few children there were awaiting heart transplants and several are facing a multitude of operations, some families coming from all over Europe given the excellent reputation of the unit. James got to stay in the brand new Scott House which are apartments for the parents of the children. Some children’s conditions have seen their parents living in the hospital for months on end so the brand new accommodation is amazing for them. It was very swish, all kited out in stuff donated from Next and the communal kitchen was like something out of Masterchef! It had only been open a week so James was one of it’s first residents. Fellow North Easterners look out on the local news tomorrow evening and you might see the grand opening being covered, rumour has it that Ant and Dec and Alan Shearer are opening it.
If any of you are ever looking for a good cause to support, the Children’s Heart Unit Fund is well worth it take it from me! Watch this video with Ant and Dec, I was totally crying watching this as I recognise the rooms we’ve stayed in and Paddy is Finley’s nurse. This week I signed up to do the Great North Run 2015 for them and I can’t wait to raise money for such a great cause, in fact raising money for them is going to be a lifelong thing for me now.
There’s no denying that this whole situation is incredibly hard for us, but without sounding like a Pinterest quote, you can either hide from the storm or learn to dance in the rain. All of this has strengthened us as a family unit, made me realise just how much I can handle and reassess what is important in life. When Finley is older I have no doubt that this experience, despite him not remembering any of it, will be a source of strength to him. He’s absolutely perfect :-)
He is just gorgeous Laura, I don’t think anyone could pull off a feeding tube better! The hospital sounds like such a fantastic facility, especially with the accommodation block for families.
Exciting news on the run, I’m sure you’ll do a great job and raise lots of money for such a worthy cause.
Thanks Claire :-)
I can totally understand your initial reaction in not wanting his photograph with the tube in. It’s been such a stressful time for you all that I’m sure once it’s over you never want to think of it again! But you are right, it’s part of his story and the pictures will remind you of what a strong little fighter he is!
I think he’s really starting to look like you, especially in the top pic!
You are so right there, I just can’t wait for it all to be over but as you say the pics will be good to look back on, and thanks for thinking he is starting to look like me, yey!
I think it’s so important to acknowledge and give difficult times as much air as the good times, as these are just as important in the story of life. As you said, Finley will want to hear all about this at some point, so recording it and accepting it as part of his life is something he will thank you for later in life.
You think that’s a Pinterest-y quote? Try this one: without rain they’d be no rainbows. Sounds sickening but it’s true.
You & James are doing a top job, keep that shit up :) xxx
Absolutely, I think especially online as well where things can become so forcefully positive. Shit happens after all ;-) Thanks for saying we are doing a good job, it’s really hard at times and nice to be reminded :-)
It’s so great to hear that he is developing so well.
You are right, he is still gorgeous no matter what.
He is such a gorgeous baby, with or without the tube! It sounds like it has been pretty stressful, although you sound so upbeat. Finley is lucky to have such a positive Mum and Dad.
Thanks Sarah! It’s been seeing the other families and babies in worse conditions than Fin that helps to put things into perspective I think :-)
Ahh what a little munchkin! You guys are coping so well and will be so much stronger as a family unit because of this. It’s just part of his story, like you said. Glad to hear he’s doing well – and he absolutely rocks the feed tube!
Thanks Anna :-) x
Tube or no tube your sweet wee boy, baby Fin looks absolutely-adorable, gr8 post Laura!
He looks so alert in every photo I’ve seen of him. I think it’s his eyes. What a handsome little chap!
How awful to have had his operation postponed, but anything that’s going to possibly give him a chance to recover quicker and with less risk is worth trying. You all sound so strong.
Oh yep, he’s super alert, sometimes too much when I want to get him asleep! As you say it’s definitely worth trying if it means things go better for the op x
he is so gorgeous Laura! he looks like he is really thriving despite all the challenges he has faced – and he is lucky to have such positive and supportive parents to look after him! good luck for the next few months of weight gain – will be keeping him in my prayers! xx
Thanks so much Bron :-) x
You are a strong mom!! Your little boy is adorable and we know he will become a strong man!! Thinking of you guys ;) xoxo
Thanks so much, hope Madison is doing well, just off to catch up on your blog!
Oh Laura, I can’t even imagine what you’re going through. But Finley looks absolutely gorgeous, and also incredibly happy :) Keeping you and your family in my thoughts and prayers <3
Thanks so much Amanda that means a lot xxx
He is so flipping cute Laura! I am glad that things are going OK over there. I hope that things get better and better and that everything goes very well :)
Love what you said – “you can either hide from the storm or learn to dance in the rain” – YES!
Thanks Lauren! I know things will get sorted eventually, that’s what’s keeping us going!
What a roller coaster for you all- but at least the op being postponed is for the best reason and he will recover much quicker from it.
How great that you are going to be running the GNR for the hospital too- it sounds amazing.
I really can’t wait for the GNR now, really excited about it!
He’s such a little cutey! That must of been so stressful for you guys to think it was going ahead and then finding out it was cancelled. Sending you all the positive vibes!
Thanks Lauren, it certainly has been stress city this week, any positive vibes appreciated x
God he is so damn cute Laura I literally wanna grab him out of my computer screen and snuggle!!!
Haha, give us a few months and we’ll be down your way and you can snuggle in person!
What an absolute cutie!! His face is filling out too, so adorable! :) I can’t imagine how much stress you’ve been through Laura but gosh, you’re going to have one heck of a story to tell Fin when he’s older! Knew you’d make the best mum ever :) So glad to hear you’re doing the GNR to raise money too!
I know! I get so excited when I notice his growth, although I definitely think he’s got James tall slightly lanky genes ;-)