Well 3 weeks in to parenthood and the rollar coaster of emotions never stops. I don't think i've ever seen so much hospital my whole life as the last 3 weeks.
Anyway, we're settling down and I love my little man, he's so amazing I could just watch him for hours. The midwife said he's putting on weight but slower than she'd like and on thursday when she visited she sent us up to Alderhey for some tests as he is still jaundiced.
We went up there and saw a doctor in the amublatory clinic who told me that the heel prick test they'd done on Logan the week before had pinpointed the reason for his prolonged jaundice. The heel prick test is done in the first 2 weeks of life and is a test for 5 diseases, PKU, Cystic Fibrosis, Sickle Cell Anemia, Congenital Hypothyroidism and another one I can't remember. All these are fairly rare things but need quick diagnosis to allow for treatment and normal development or the baby can suffer from metal retardation and "slow" learning.
So, turns out Bean has Congenital Hypothyroidism (underactive thyroid to you and me - very underactive in his case as he's got no thyroid glad at all!) and this is causing the jaundice. If left it could cause him learning difficulties and development problems because the levels of THS in the system are off balance and could hinder growth of all main bodily systems.
BUT although it's rare (1 in 3500 babies in the UK get it each year) it's infinitely treatable by giving Bean thyroxin daily for the rest of his life. The Dr and nurse I saw at Alderhey were AMAZING, told us everything we needed to know and said that if we began treatment now then no one would know any different when he grew up. He said if you put bean next to a "normal" kid only a psychologist armed with fancy tests would be able to determine CH in a person. Everyone else would just see a normal child.
This is a relief, it could have been so much worse which is how I have to look at it. If it's infinitely treatable with one tablet a day as opposed to a needle after every meal or visits to hospital to clear your lungs of fluid then it's fine. We can do that and be fine. It doesn't stop you being alarmed and upset because you can't help thinking it might be somehow your fault. It's not but I guess that's parent guilt. I know Lexy had a similar battle of worry and stress with princi before she was born and I understand now how emotional that must have been.
But, other than that we're doing fine, I'm getting more and more miserable about having to go back to work in a few weeks. I'm going to find that SO difficult and it's so hard as there is not way round it so I'm attempting to make the most of my time off by visiting Mandy and Chloe, going out with bean and just staring at him :)
On that note I best go as I can hear the gremlin noises from next door meaning he's waking up for foods!
3 comments:
Aw love, I'm glad his difficulty was spotted quickly. My mum has been taking thyroxin for years and years now (very high doses of the stuff). It must feel very strange when they tell you something like that.
I can't wait to give him a huge hug and see you too.
*Hugs* hon. But, like you said, it could have been worse and it is treatable. And yes, the 'It's my fault' guilt - even though it's unfounded as it's something that you couldn't have known would happen - hurts. Saying that, I was feeling guilty during the pregnancy because I knew I had a disability and I was afraid of it passing onto Princi. But, and here's the genetics bit, because the gene that is affected is known as 'autosomal recessive,' it means that both parents have to have the gene. So while Princi should be fine and not experience any problems, she is a carrier of the gene and can pass it down onto any kids she may have. That's where the guilt comes in for me now, and that is entirely my fault for passing on the dodgy gene.
I so wish you didn't have to go back to work. Are you not able to work from home again for a few weeks?
Well, and I know this goes without saying, but I'll say it anyway, give Logan hugs as often as possible. I know I do with Princi! Give Logan a hug from me :)
It was lovely to see you guys today and Logan is gorgeous! baby hiccups really are amusing :)
My dad doesn't have a putitary gland so his thyroid won't function and he takes thyroxin everday and he is so very clever even though this wasn't caught very early.
This was spotted early and all will be well :)
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