Righto here is my first go at writing a blog.
The reason for this blog is help keep everyone updated on little Chloe but also to help my sanity with everything that we experiencing with normal parent life but also coping with the journey that we have been given. I want to confirm I know that we are very lucky that we have Chloe in our lives and also well aware that Chloe’s health could be alot worse than it is . . . saying that, it is still hard to deal with your own hopes and expectations of a healthy baby not exactly happening as wished. I think for everyone to fully understand it’s best for me to tell the full story.
It all started with the 12 week scan and getting told that our baby had a very high Nuchal Thickness measurement and that in the scanners opinion the baby was a girl with Turners Syndrome. We went onto having a amniocentesis to confirm if there was any chromosome deformities, those weeks of waiting for the results was absolute torture. The results came back with no chromosome deformities but they also said that they couldn’t rule out any rarer or genetic syndromes . . . it also confirmed that our baby was a girl.
Still feeling uneasy with how the pregnancy was going to continue we then went and had the anatomy scan at about 17 weeks. This confirmed that the thickening on the neck was still there but there was also fluid around one of the lungs which is called a Pleural Effusion. We were then were referred to Wellington Hospital to have monthly scans. During these scans the fluid would come and go but luckily in the last to months of the pregnancy fluid stayed away. During these visits it was bought up again that everything looked fine but they couldn’t rule out a possibility of a syndrome called Noonans, at the time though we didn’t even really think . . . I don’t know why but maybe we just wanted to hope that all would be normal. We agreed with the doctors there that it was best that we would have the birth in Wellington as a precaution and because Chloe was determined to stay in a breach position they booked me in for a c-section.
So the 13th January finally arrived, and I can’t praise the team in Wellington enough. They were just all so lovely with making it feel so calm and special. We had a team of paediatricians in the operating room ready to take action if needed.
I remember the moment they showed me Chloe . . .
OMG she has RED HAIR!!!
Hahahaha and then those scary moments of them doing all the checks and waiting for them to say all was ok. She was born 7lb 3oz, tiny in length and very puffy with a whole lot of fluid. The thickening on the neck was there and looked so very prominent. The next couple of days the fluid from around Chloe’s body and neck disappeared and she lost nearly 15% of her body weight which they had expected to happen. Day 2 of her life on the outside was bit of a yucky day for Chloe because of getting checked out by the different specialists, which lead onto a couple of days of refusing to feed and very stressful days of trying to get her to feed. They confirmed that there was no cysts on the back of her neck, no fluid in her lungs, a small hole in the heart (which they said was common and should resolved by itself) and got checked by the genetics team. They again mentioned the possibility of her having Noonan Syndrome but they weren’t to sure and would check her over again at 6 months . . . but one of the Paediatricians said that he didn’t think she did. As hard as it was being away from Taranaki during this time, looking back it gave us a full week of making sure that Chloe was feeding properly and we felt completely comfortable taking her home.
It felt so good finally getting Chloe home and we started to get settled into having our baby girl home. Chloe was feeding well, so we were sure that the weight would start to pile on. But after a week being home my midwife was concerned that Chloe had started to lose weight and she also wasn’t happy that our first appointment with the Paediatricians was over a month away. She called up the hospital saying that she was concerned about Chloe having lost weight and also possibly still having a bit of jaundice. So up we go to the hospital. They don’t seem concerned about her but do some routine blood tests which showed something no one expected at all, her White Blood Cells were high and her Platelets were very low. We were told that we would have to stay in hospital for a couple of days so they could figure out exactly what was happening cause she ether had some kind of infection or had something called Juvenile Myelomonocytic Leukaemia (JMML).
Hearing the word Leukaemia was very scary . . .
there was lots of tears.
Waiting for the Haematologist up at Starship Hospital to review her bloods was torture. They confirmed that it was JMML but there was a positive, they were pretty positive she had Noonan Syndrome. Why was this a positive?! JMML combined with Noonan Syndrome has a good outcome of resolving itself within a year without any treatment. The Pedtricitians here had to do there own bit of google searching to find out what we were dealing with, and he had found a article which called it a ‘Blessing in Disguise’ which is very true. We had gone from hoping that our daughter didn’t have a syndrome to hoping so badly that she did.
We were sent home and were told that we would have to bring Chloe in twice a week for a blood test to check her WBC and Platelet levels to make sure they didn’t get to levels where they would ether have to give Platelet Transfusion or give her a form of chemo medication. The first couple of times her levels went up and down but seemed to be relatively stable so we got stretched out to weekly tests. Then her Platelet levels started to improve a lot so we got pushed out to fortnightly test. But then all of a sudden they did a big jump and were back in the normal range . . .Yay!!!!!
So we got put on tests every 3 weeks. Well last week Chloe had her latest blood tests and her Platelets were still in the normal range but also her WBC were down to 25 the best they have been so far (we are aiming for 15). So we are now on monthly blood tests which is just awesome. The less amount of time that we spend at the hospital the better. They are very happy with how she is developing and considering she has the JMML and Noonans she hasn’t been sick so far , which is amazing really.
The only thing that is really holding us back at the moment and hanging over our heads like a big black cloud is her very slow weight gains. No matter how much feeding she does, her weight ether stays the same for days/weeks or only goes up in small amounts. So we are giving her a high carb and fat supplement to help with that, it has improved the gains a bit . . . though still not decent. As of today she is 53 cm long and sitting at 4.08kg. Chloe has good days and bad days taking the supplement, some days she takes it all without bringing any of it up but other days her gag reflex gets the better of her and won’t keep it down. Hopefully as she gets older and starts having solids that gag reflex settles down. In the meantime Chloe is making the most of her newborn clothing, bassinet and capsule. I try to not let it get to me but it definitely plays on my mind and I’m consistently worried it she will ever grow. When strangers ask how old she is, I find myself quickly adding in that it’s expected that she is that small and that there is nothing wrong with my milk . . . just in case if they start judging.
We still don’t have a confirmed diagnosis that Chloe has Noonan Syndrome, this won’t come until a later date when the genetic team from Wellington see her at around 6 months. So much is unknown for her, we don’t know what complications or issues for that may pop up. At this stage we just have to take each day as it comes and remind ourselves to enjoy her . . . watch her develop her skills and personality.
So there it is people; that’s been our journey so far. A bit of a long one but thought it was necessary to let everyone know to avoid confusion. I’m going to use this blog to record Chloe’s progress for those who are interested. But I’m also going to use it as a kind of journal with hope that it gives us a method of coping with what ever bumps in the road pop up.
Excellent first post babe. Keep them coming.
What a princess Chloe is. Awesome blog well written Anita. She is a blessed we girl to have parents like you guys xxlove to you all xx
A precious wee girl with the perfect parents for her. She chose well. As confusing and at times fearful as things may seem remember to trust your mother’s heart and please don’t forget you are not alone. Go Chloe!
well done girl…. you both are doing a top job, being a new parent is not easy, every baby is different and most days will be different, take the phone off the hook and sleep when you can, call a grand parent and go out when you want, (they will love it) listen to your mothers intuition, our thoughts are with you all
What a well written article Anita you have a true talent. Along with your talent of being a beautiful strong mummy to your gorgeous baby girl. You are a real inspiration and a role model. Xx
Very well written hun. Its a real privilege that you are sharing this with us and I’d like to say thank you for doing so. Xxxx
Well done Anita. You are doing so well with all that has been thrown at you. She is a lovely wee thing.
Thanks Anita and Laurie for sharing Chloe’s story. Keep strong – she is so lucky having such wonderful parents.xx
I feel blessed to have such a gorgeous niece in my life and Paige loves her little cousin to bits !!! I am positive these two will get up to much mischief later on in life . Chloe has 2 great strong parents who are doing a fab job !!! Xox
Wow what a journey you guys have had. Thank you for your in depth blog. It’s very kind of you to allow us to understand what you’ve been going as the posts on Facebook didn’t tell the true courageous tale. Anita and Laurie, Chloe is a just amazing. Xxz
Dear Anita, your daughter is absolutely beautiful! What a little stunner. I am so inspired by your positive attitude towards life and its constant challenges. You are going to be a wonderful role model to Chloe. I wish you and your lovely, little family all the very, very best in the years to come.
Chloe is a blessing to you and Laurie. Thanks for sharing your personal journal as loving parents to a beautiful wee daughter.
Xx Aunty
What a brave thing to write. All the best to you for what is ahead of you but chloe is lucky to have such great parents and support
Hi there – I have just read your blog – bought tears to my eyes. Keep strong and enjoy every precious minute – they are such blessings. My daughter & her partner are going though their own journey with our precious 6month old grand daughter who was born with Down Syndrome. What special babies we have and how lucky they both are to have such amazing parents/families. There will be sad/hard days but know you will get through them. Sending you all big hugs! You are stronger than you think and you will meet some amazing people throughout your journey. Cuddles for Chloe. xx Carole
You are truly inspirational. Thank you for sharing. Looking forward to hearing more about this precious little person and her courageous handle on life. xxx
Hi there.. I read your blog and I know this story as it was very similar to our journey with Amanda.. Different genetics .., same stress… She is 18 and living in Wellington but in the early days both pre and post her birth I couldn’t see the future… But it is amazing what your children teach you about love hope residence and laughter… Much love Dawn x
Thanks so much for sharing.
My love and best thoughts are with you all but especially that beautiful little girl.
Thank you Anita and Laurie for sharing your journey with everyone about Chloe. Chloe is just beautiful with those lovely blue eyes and so cute smiles,our love and best wishes Kevin and Marlene xxx.
Beautifully written and gorgeous little girl Chloe x
What a wonderful idea Anita. You write really well and from the heart. Such a great way to capture Your journey and Chloe’s journey. Xxx
Chloe is such a gorgeous wee girl. This blog is very heartfelt and I wish your family all the very best for the future.
Can understand your fears and stress. Someone told me once these special children are only given to those who can cope, many of us have been through similar things, it is hard but the rewards of raising these amazing children can be many. Much love. Sharron
Good on you for writing the blog about your journey with Chloe. She is an awesome wee girl & is lucky to have you as parents. Keep up the great work & positive thoughts.
Lovely idea. Often wonder how you guys are getting on xx
Finally got round to reading your first blog honey and wow…u did good. I am looking forward to reading it all from now on too. Chloe is an angel and such a strong little girl. Love seeing her videos. Keep them coming. Time is on my side now too so let’s hook up on a Skype soon please. Missing her and her two beautiful parents xxxxx
Hi I am your Mum and Dads neighbour and my daughter Geena said she had read your blog and realised our connection. Sharron had told Geena and I a little of your experience and It was very nice to read about your journey with your daughter. I work with people with disabilities and their parents speak of similar experiences with their children and the adjustment. Chloe is a beautiful baby girl you are so lucky.