The boys birthday came and went and it was nice not to do anything! Well, actually we went to the Temple where Ochre and Azuah's ashes were scattered and I had a CRY!!
Moss and Kutura have come so far, Bluqi and I are finally reconnecting on a deep level again and life roll into a blurr of breastfeeding, nappies, the next meal and sometimes sleep. Nothing medical on a daily basis, no survival strategies; just simply living. Matty and I even chat sometimes .. lol. This is all good :-) I am stronger, raw-er and roar-ier for bringing my children into this world and so thankful for my experiences.
Medically, there may still be some hurdles for Kutura around his liver function and PDA (still-open heart valve). But nothing we can do for now except 'delay routine tests' with support and communication from Dr D as to when last-minute-testing is. By this I mean, why test unless we chose an action based on the result? There is still time for Kutura's PDA to self-resolve, so we remain hopeful that he will not need his valve surgically closed around age 18months-2years. We see no need to check his liver function as it was on the way up when he was tested regularly, and he is not a sickly child. He is crawling, walking-holding-hands, pulling up on furniture, saying 'Mumma' and 'gook' ('look') and is bright eyed and very (very very) active. At 9 months adjusted, he is actually meeting 9 month milestones and looks so cute doing so as he is still so tiny!
Sweet lil Moss is getting bigger. No lung or head stuff to report, except that his bottom 2 teeth have emerged :-) His body is growing into his head and his spirit is becoming more alive in his current being! He is loud!! A singer, a music maker and a kick-kicker with both legs moving always together like a happy frog. 'Mumma' 'Dadda' 'Bubba' he says. Now loving sitting against pillows and his tummy time thanks to neck and upper body strength he is becoming more playful and so so happy to be alive! He will be starting physio with an osteo-cranial dude who, like Dr D, tells us that there is no sign of cerebral pausey which can be indicated by high muscle tone. He has some low tone, which is understandable given what he has come thru, but everything is in working order so we continue to support and encourage movement and play.
This is something I wrote on a thread recently in response to a woman, and like my wording so adding randomly here;
The profs at the nicu that we spent 157days at are in awe of how my boys are doing, as statistically one should not be breastfeeding and the other should be dead. i rejected much of what 'they' said along the way, did my own research, made informed medical decisions. what i discovered was a multitude of conflicting opinions within the staff and an open minded neonatologist willing to take us on.
I fought hard to be the one making the decisions for my babes, and staff members actually admitted to me that many decisions of a baby's welfare are made behind-the-scenes without parent knowledge as it is too much for parents to deal with. i dealt with it .. my <1kg 26weeker twins are fully breastfed. i am proud of that .. but i didn't do anything special - except refuse accept my ability to make decisions was less than adequate.
i also didnt fall for the 'dead baby card' of control ;P
Yep, still breastfeeding, still co-sleeping and still in cloth nappies full time ;-)
As life is getting easier (and I a using a laptop again) I endeavour to blog more xX
Happy Birthday to my big lil boys too! :-)
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