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Baby Lili Fa'alili

  • Update for 07/04/2014 From Anne

      7 April 2014

    Well, this is the happiest bulletin Ifve yet been privileged to send out about our little miracle baby Lili and her courageous, positive parents and big brother. On Monday 31 March the surgeons finally had a elook-seef inside Lili to find out what was causing the obstruction theyfd noticed in their earlier scans and to discover how things were progressing in terms of the Necrotising Enterocolitis (NEC) shefd developed in her first week after birth, which had caused a considerable amount of her intestinal tract to die. To their utter amazement, they found that her little body had not only re-absorbed practically all of the ebadf part of her intestinal tract, but it had regenerated new tissue, and grown a whole stretch of new tract!! The obstruction that theyfd observed with their earlier scans turned out to be a bit of lesion tissue, which they cut out, rejoined the two good ends together, and now shefs got a whole, unobstructed, tract which, once everything has healed, should function normally from here on! It will be considerably shorter than the intestinal tract of most people, but, with the right care and management, should be fine! The doctors are calling her the miracle baby, and thatfs so true. She has defied the odds on every front since she made her dramatic entry into the world sixteen weeks ago, and wefre all convinced itfs been down to the continual, unfailing love and care of her parents, the wonderful medical staff in Auckland Hospitalfs NICU and in Middlemore, and to the prayers, support and good wishes of all their family and friends from all over. The photos Ifve attached show Lilifs cheeky little smile before they took her in to theatre in Monday, Liz with the nurses getting her ready for theatre, Lili post-op and back in her room, and one taken yesterday morning by Lilifs adoring Dad! I went to visit yesterday afternoon, and have fallen in love with our beautiful little baby all over again! She is still somewhat swollen from the op, and is back on the oxygen feed, because her little lungs struggled a bit post-op, giving everyone a scare day before yesterday, when all her monitors went into eemergency alarmf state, and had everyone running around frantically! Also, shefs still being fed intravenously, because they need to be sure the intestinal join is healed and all is fine there, and functioning correctly before they dare give her other food, so shefll still be in NICU for a bit. But soon theyfll be moving her to the appropriate ward in Starship (where all the ebig kidsf go!!!!) because shefll be a ebig kidf too by then!! You will notice that Liz has had half of her hair shaved off for the eshave for a curef drive ? bless her! In spite of all they have been going through, her big heart has led her to do this wonderful thing too ? thatfs our Liz for you! And Wednesday, 2 April was Lilifs official due date, so shefs now reached full term ? wow! What a journey! So, although there are still some milestones to be ticked off in the next few weeks, it would seem that things are moving towards ehome timef for Lili and her lovely family, though realistically that may still be a month or more away. A heartfelt thank you to all of you from Liz, David, DfArtagnan, Lili and their family for your interest, care and concern over the past hectic, anxious four months. The hospital staff have been amazing in this time, and my admiration for their skill and dedication is sky-high as Ifve seen what theyfve done for Lili and other similar babies and their parents ? we do indeed have a wonderful health system here in New Zealand! Hopefully my next bulletin will be the last hospital-based one ? holding thumbs!! Thank you all

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  • Anne's first bulletin

      7 April 2014

    A quick update for you on developments regarding our Lizzie and her brave little Warrior Princess, Lili, who is the most amazing little battler Ifve ever encountered!! When I visited them yesterday, I asked about sending out an update, and they were very happy for me to do that on their behalf. In the week following her dramatic arrival into the world, Lili developed a condition called Necrotising Enterocolitis (NEC), which basically means that the intestinal tract began to die ? itfs a common condition in premmies, and fortunately there are things that can be done in todayfs medical world to help this. It involved transferring Lili to Auckland City Hospital, where an operation was done on Boxing Day to remove 12 cm of her intestinal tract. A further 37 cm was in bad shape, but the doctors felt that to remove that as well would mean she wouldnft be able to survive. On Thursday afternoon, the family were called to say goodbye to Lili, as it was felt she wouldnft last the night. But, she rallied, bless her, and is still fighting!! Her little toes turned black and initially it was thought that theyfd have to be removed, but the toes on the right foot have slowly turned pink again, and even the left foot is gradually showing more pink, although it is still uncertain as to whether it will recover completely. At first, while she was so very critical, David and Liz were given a room just down the corridor from Lilifs ward, where they were able to stay to be near her at all times. Now, though, Lili has improved to the extent that this is no longer necessary, so they have been given a room in Starship in the Ronald McDonald Parentsf unit on level 3, where they can sleep at night, and be with Lili during the day. When I saw her yesterday afternoon, I was amazed at the progress made. Lili still has some swelling, but in spite of all the setbacks, is slowly putting on weight, and has even graduated to the next size up in nappies ? an amazing achievement!! There are also signs that her intestinal tract is gradually regenerating ? a miracle baby indeed!! In her ward there is a lovely little sign that gets updated each week, showing her actual gestational age ? so far shefs reached 27 weeks, having been ebornf at 24 weeks!! So already three weeks have passed, and shefs still determinedly hanging in there!! Liz and David and big brother DfArtagnan thank you all for your thoughts and prayers during this most challenging time of their lives. We have not yet sent any flowers, because Liz has nowhere to put them, and they would be an added complication at this stage, but she knows that wefll be sending some when all this is over. Will send out updates from time to time, but thanks again for your caring and your interest.

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    • 14/04/2014 by New

      A quick update for you on developments regarding our Lizzie and her brave little Warrior Princess, Lili, who is the most amazing little battler Ifve ever encountered!! When I visited them yesterday, I asked about sending out an update, and they were very happy for me to do that on their behalf. In the week following her dramatic arrival into the world, Lili developed a condition called Necrotising Enterocolitis (NEC), which basically means that the intestinal tract began to die ? itfs a common condition in premmies, and fortunately there are things that can be done in todayfs medical world to help this. It involved transferring Lili to Auckland City Hospital, where an operation was done on Boxing Day to remove 12 cm of her intestinal tract. A further 37 cm was in bad shape, but the doctors felt that to remove that as well would mean she wouldnft be able to survive. On Thursday afternoon, the family were called to say goodbye to Lili, as it was felt she wouldnft last the night. But, she rallied, bless her, and is still fighting!! Her little toes turned black and initially it was thought that theyfd have to be removed, but the toes on the right foot have slowly turned pink again, and even the left foot is gradually showing more pink, although it is still uncertain as to whether it will recover completely. At first, while she was so very critical, David and Liz were given a room just down the corridor from Lilifs ward, where they were able to stay to be near her at all times. Now, though, Lili has improved to the extent that this is no longer necessary, so they have been given a room in Starship in the Ronald McDonald Parentsf unit on level 3, where they can sleep at night, and be with Lili during the day. When I saw her yesterday afternoon, I was amazed at the progress made. Lili still has some swelling, but in spite of all the setbacks, is slowly putting on weight, and has even graduated to the next size up in nappies ? an amazing achievement!! There are also signs that her intestinal tract is gradually regenerating ? a miracle baby indeed!! In her ward there is a lovely little sign that gets updated each week, showing her actual gestational age ? so far shefs reached 27 weeks, having been ebornf at 24 weeks!! So already three weeks have passed, and shefs still determinedly hanging in there!! Liz and David and big brother DfArtagnan thank you all for your thoughts and prayers during this most challenging time of their lives. We have not yet sent any flowers, because Liz has nowhere to put them, and they would be an added complication at this stage, but she knows that wefll be sending some when all this is over. Will send out updates from time to time, but thanks again for your caring and your interest.