Thank you to my dear blogging friends who left kind and comforting comments on my last post.
Little baby Mason was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) intra utero. This is a severe heart defect, where the left side of the heart does not develop and therefore function correctly. Mason's mitral valve is completely closing as a result, preventing his blood supply through his heart. Mason was also diagnosed with other cardiac abnormalities such as arch hypoplasia and aortic atresia.
Throughout Mason's development in the womb, his mother, my grand-daughter, Krystal had been meeting with a paediatric cardiologist and other specialists to plan many extensive surgeries over the course of a few years to correct these abnormalities, once Mason was born (due 27th September, 2021)
Unfortunately, Mason decided to arrive on the 25th July. Krystal had been transferred from our local hospital to Auckland City Hospital the day before. She dropped her 4 year old daughter, Lexis off to me on her way to hospital and she stayed with me until Krystal and baby Mason returned to Whangarei Hospital. She was a wonderful distraction but oh, how tiring!
The family had to accept that surgery was no longer an option for Mason due to his extreme prematurity and undeveloped organs. A decision was made to transfer Mason back to Whangarei, to the Special Care Baby Unit via the rescue helicopter, for palliative and end of life care.
Little Mason has surprised everyone by surviving to this point, 12 days now since his medical equipment was discontinued.
Krystal has taken him home, something she never thought she would be able to do. Every day with him is another blessing. When they first turned off the machines we were told it could be hours before he passed away, then 2 days, then possibly two weeks. He continues to march to the beat of his own drum (or heart).
It's hard to describe how tiny he is, how absolutely beautifully perfect he looks on the outside. Just 3lbs 1oz at birth, his little head is about the size of a medium sized orange.
Lexis is just the best big sister, so gentle and caring. I often have to look away when I see her holding him and giving him gentle fairy kisses.
Oh how sad and at the same time how amazing. My thoughts are with you and your family, and what a beautiful photo of your granddaughter with her precious little brother. Love to you all.
ReplyDeleteI agree, Rosie. Little Mason is amazing us all, including his medical team. His sister is wonderful with him.
DeleteMy dearest Pauline, I'm so grateful you visited my blog as I in turn am here at yours, to read with immense heartache Mason's story. What a little champ. Lexis gentleness and love is deeply touching. My love and prayers are with you and your family during these tense and troubling times. What a blessing this week fellow is. Let's stay in touch. 💖
ReplyDelete*wee* fellow. 💖
DeleteThanks, Rose. Yes, the little champ is a blessing for us to cherish for as long as he stays with us, earthside as his godmother says. I like that expression. It's good to be in touch again.
DeleteI cannot imagine what you are Krystal and the family are going through at the moment. I have no useful words other than to say that you are all in my thoughts.
ReplyDeleteHi Graham, I'm in awe of how Krystal, always our little flibbertigibbet, is coping. She's a wonderful mother, Lexis is a credit to her. Thanks for your kind words, I appreciate your friendship.
DeleteIt must be very difficult to stay strong in times such as this, Pauline. You are in the thoughts of many.
ReplyDeleteThanks, David. We are all coping the best way we know how, by supporting each other.
DeleteSo sad and so sweet all in one. The will/instinct to live can be so amazingly strong sometimes, against all the odds... ♥♥
ReplyDeleteHi Monica, The odds are stacked against wee Mason unfortunately. But while he's here he's spreading love and none of us can do better than that.
DeleteLet us hope that Mason continues to overcome his problems and prosper. Our hearts go out to you and the family.
ReplyDeleteHiya, Thanks for your kind words. I appreciate them.
DeleteHugs and prayers for all (my eyes are too leaky for me to type more).
ReplyDeleteMy eyes have that problem, too, messymimi. And thanks for your prayers.
DeleteWonderful and sad at the same time. Life hands out many challenges to us. I hope Mason beats the odds.
ReplyDeleteThanks, Michelle. I'm afraid we have been told over and over not to expect a different outcome although it's hard not to when he's already something of a miracle baby.
DeleteLike you I rarely write a blog post these days but I like to include life's big events there as I consider it a sort of diary.
ReplyDeleteI hope your family can count this time with your little warrior as a blessing to look back on in years to come. Sad.
Hi Helsie, Yes, a blog makes a terrific diary. I've been reliving my trip to Ireland which I had 6 years ago this week. Helps keeps my memories alive. Thanks for your comment.
DeleteOh! What a beautiful little fellow Mason is; and what a fighter he is. May the darling little fellow continue his battle and win. My best wishes and positive thoughts go his way....and special hugs for the dear little soul.
ReplyDeleteI'd not read your previous post until just now, Pauline, just before reading this one. I'm so sorry you and your loved ones are going through this most difficult time. May only good news come your way. Much love to you and your family. Feel the warmth of our arms around you all.
Hi Lee, Our little warrior is still surprising us all. Thanks for your lovely message.
ReplyDeleteThis is a heartbreaking post. He is so tiny and yet so strong. He doesn't want to give in. It will be so sad for everyone when he goes. Sending you hugs.
ReplyDeleteOh Pauline, I have just been catching up on reading posts and yours has brought tears to my eyes.
ReplyDeleteSending you all much love and hugz, Margaret xxxx