Bonus Blog!

Just a quick one for those living locally. We are holding a quiz night at St. Matthew’s Church Hall on Friday 5th June 2015 with all proceeds going to The Stuart Gordon Fund for cystic fibrosis research.

Tickets are £5 and the night will include a quiz, raffle and entertainment.

The last one we had was a great night so please message me if you would like to come and support our fundraiser.

My beautiful baby and many others are in desperate need of a cure so please help. If you can’t make it and have anything you would be willing to donate as a raffle prize let me know.

Harriet’s Five Month Update

Three Weeks

I have decided to follow up last week’s post with another detailed Harriet one simply because I hope(!) people will want to know how she is doing today. As I have previously mentioned, they won’t all be about her and cystic fibrosis – I promise!  A LOT has happened in the last five months so I will attempt the short version and condense it as best I can into one post.

The weeks following our discharge from hospital were a whirlwind to say the very least. Every day we had a different health care professional come out to our house. Harriet has a nurse, dietician, physiotherapist and social worker so alongside your usual midwife, GP and health visitor checks we were inundated. We had to become fast friends with our local chemist as the list of medication we need on a weekly basis is mind-boggling. We were also facing the challenge of learning to care for her stoma. I couldn’t even bring myself to do it at first, and if her bag showed signs of coming away or leaking and Chris wasn’t around I would become totally overwhelmed with panic. Chris did all the bag changes for a long time – he’s an amazing dad. Though these days I could actually brag that I do the best ones! I could do one in my sleep really and, to be honest, I probably have!
One Month
Health-wise, Harriet was fine until she was seven weeks old and developed a cough. As we don’t have a clue what we are dealing with, Chris ended up in A&E with her in the middle of the night. She was checked out with no major worries but after a few days there was little improvement. Fortunately she had a routine check-up at the CF clinic and, unfortunately, it was a chest infection. She was rushed off for an X-ray on her lungs and, upsettingly, we were told to hold her down in case she fussed or cried. Of course she didn’t. She dealt with it in her usual laid-back manner; a few smiles, gurgles and giggles for the radiographer which lessened the tension and made their job much easier. Thankfully some extra antibiotics were prescribed and we avoided a hospital admission. It is completely normal for Harriet to catch coughs and colds like any other child. If Nancy had a sniffle at that age we wouldn’t really think much of it but now any sign of a cough can be worrisome as an untreated infection can cause irreparable lung damage.
Two Months

When she was poorly she naturally lost some weight, and it was at this point that the dietician introduced a different supplementary feed for her – a high calorie milk to consume four times a day. I was breast-feeding but had been able to give Harriet a bottle which was a huge achievement as I could never do this with Nancy. I had racked up that many hours on the breast pump during our initial stint in hospital that I actually came away with a huge sack full of the stuff, and had to clear out my freezer to store it all. Chris jokes that I must have been a wet nurse in a past life!

Morning Medicines

Everything was now focussed on Harriet putting on the pounds. At five months she is 13lb and on the 25th centile. It doesn’t sound much but when you factor in having major surgery then being poorly she has actually done really well to catch up this much. Her weight has continued to go up steadily; so much so, in fact, that in January the surgeons were so pleased with her progress that they gave the go-ahead for her stoma reversal. We had hoped it would have been over and done with by now but the hospital waiting lists dictate when it will be. Harriet has had the pre-op procedure, probably not the most pleasant of things to endure but it didn’t bother her in the slightest. Like any other mother I am dreading it but it will be the end of that chapter and we can just focus on her CF treatments.

Three Months

Sometimes it feels like we are at the hospital on a weekly basis. I feel for Nancy as she often has to come with us, and does so well to sit for so long without complaint. Chris uses holidays for hospital time which makes me sad. Chris and I have only been out together once for our wedding anniversary, and even then we were five minutes’ drive from home and were gone for two hours at most! It may sound ridiculous but until she has her stoma reversed we can’t really leave her for long with anyone. Of course we could show them how to care for her but as her operation could literally be next week there’s very little point.

Four Months
Nothing will ever be the same again but I know we can deal with it as best we can as a family. On the flip side we have the most beautiful, happy and contented baby. I used to joke throughout my second pregnancy that this was going to be my ‘good’ one and for once I was right. And by that I mean well behaved! We can now look back and laugh at the completely crazy time we had with Nancy and have come to the conclusion that she just really did not like being a baby!
In terms of development, Harriet is now starting to grab and hold toys, trying to sit herself up and has really found her voice. The one thing I can’t get over is just how smiley she is. She is always so happy and just an absolute joy to have.
Five Months

I plan to do monthly updates for her and hopefully the six month one will involve good news about her operation.

Please comment below if you have any questions or get in touch via my social media profiles Facebook or Twitter.