Introducing my little miracle, Louis

Wow, I cannot believe it has been an incredible 5 months since my last diary entry where I was updating you all on being 25 weeks pregnant!

00050After an immensely [physically] challenging pregnancy in the mid to latter stages, I was admitted into hospital late April, after a routine growth scan, as bump’s growth had worrying halted. With plenty of rest and more medication, we made it to 35 weeks and Louis John Clements was born on the 4th of May 2016 at 10:10am weighing a respectable 4lb 2oz……and is now the butt of anything and everything related to Star Wars.

He was born via a planned caesarean section, like my 9-year-old, however second time round was pretty horrific. Apart from the previous c-section, I’ve been pretty fortunate to get away with only key-hole surgery for my stoma formation and other resections. However, there were so many adhesions, and lots of scarring, I didn’t think they were ever going to get him out; the tugging and pulling of my insides was horrendous! Needless to say, in my lifetime having had 3 thoracic surgeries, 2 pleuradesis’, 1”-thick chest drains inserted while awake, 1/3 small bowel removal, stoma formation, stoma re-fashion & previous section, I will NEVER be putting my battered body through it again, much to her relief!

Due to Louis being 5 weeks premature and having a low birth-weight, it was pre-planned that he’d need to spend some time in NICU, particularly with his on-going kidney/abdominal issues.

He spent a total of 12 days in there, but at the time the days felt like months and I was an emotional mess not being able to have my baby next to me.
00031I was left on an open ward with 3 other women whom all had their babies with them and it was absolutely torturous! So, I would go up and spend all my time next to him in NICU, but it wore me out recovering and being poorly myself, pushing myself to the limit to ensure my milk came in and then ended up needing 2 units of blood.

Luckily, apart from Louis’ inability to feed, he thrived daily and was eventually able to come home with his NG feeding tube at 2 weeks old. It was incredibly daunting taking such a tiny ickle bundle home as he only weighed 3lb 14oz after dropping from his birth weight.

In order for him to have been allowed home we had to be on a strict schedule to ensure he gained weight and at a reasonable pace and not go back the other way. Rather gruelingly, I had to pump like a jersey cow every 3 hours to cover his high-volume, 3 hourly tube feeds.

We soon got our own little routine going, although it was challenging being so sleep-deprived, coping with the breathlessness of my lung disease as well as maintaining a good diet and taking care of a problematic stoma that had burnt so much of my skin off I winced every night. I couldn’t fault Louis’ care, it was amazing; the community NICU team came to see him 2-3 times a week to check his progress and for tube changes.

DSC_0720 Through the weeks, when he had enough energy we worked on teaching him how to feed for himself and eventually at 5 weeks he had become fully self-sustainable and was able to gain weight without the tube.

Louis is now 12 weeks old and we’re still on a bit of a rollercoaster ride with him because of his kidney/abdominal issues that are causing him discomfort, as well as possible neutropenia. And, to add insult to inury, on 22nd June we took Louis for his GP check and he had developed a huge inguinal hernia – where the bowel drops into the testicular sack through the ‘tube’ where the testes drop – which isn’t uncommon in preemie babies.

So, on the 27th June he had surgery for it to be repaired, but when they got inside they discovered his appendix had been pulled through along with is bowel; no wonder the poor little mite was so uncomfortable. *Touch wood* the repair was successful and all has healed well.

Despite all he’s been though, and continues to go through, he is such a beautiful, happy little soul and I couldn’t imagine my life without him. I still stare at him in awe that he’s actually mine after a clinical diagnoses of infertility 6 years ago meant I’d never be able to have another baby; he really is living proof that miracles DO happen!

DSC_0507On paper my life sounds pretty tragic: Interstitial Lung Disease with only 24% remaining lung function, HPA-Axis failure, the bones of a 90 year old through medication, battling crippling crohns disease and coping with a stoma, but my body never ceases to amaze me.

My life might be limited, but I’ll never limit what I achieve in life!

Much Love,
Rachel xxx

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