Take a deep breath
Today was a rough day. Â Hamish and I are struggling and sad right now. Â So I really feel the need to post about the GOOD stuff.
Ok so Aria didn’t get the vent out for long BUT she did manage to pull out her NG tube. Â Oops, it wasn’t on purpose, her thumb got caught when she rubbed her nose. Â The NG tube goes into her nose and down the back of her throat. Â they decided not to replace it and see what happened. Â Great news was she didn’t vomit and all her stomach juices and bile came out her stoma. Â Her intestine is working! Â From the time Aria was 12 hours old she has vomited bile, because it was coming up rather than going down, so she has always had either an NG or gtube to drain it. Â So at the end of the day they put a soft feeding tube in her nose into her tummy for FEEDING! Â Not just yet but soon.
The head of transplant came in to chat and he was saying how pleased he is with her progress. Â He was saying how very sick she was and he believes they got her transplanted in the ‘nick of time’ Â Praise God praise God!!!! Â He said little girls often fight fight fight but once they fall off the cliff there really isn’t much coming back from that. Â We see the fight in Aria so much, she has so much courage to battle on.
Aria and I had a wonderful Skype call with a class of 6 year olds at Nelson Central. Â Their teacher contacted me to tell me they has been following our story from the Dom Post article. Â They all asked great questions- one I didn’t have the answer too so I will have to ask at rounds tomorrow- clever kiddies! Â They said thank you at the end and that they cared about Aria and I nearly cried, so very sweet. Â Aria was asleep thru it all but they got to see her a bit.
Also we *think* we might of found a place to live!  We are pretty excited but nothing is certain yet.  It is very reasonably priced and is fully furnished and lovely and modern.  We visited a hospital family who currently live there and they love it.  Super safe, gated entry and access code to get in the building.  We will save trust money on not having to buy furniture etc.  The only bummer is that it is a distance from Bellevue but not crazy far.
Thank you for all your beautiful emails, lots of people had said they feel rude or shy to ask.  Please don’t.  This isn’t how we want to do things but it seems necessary.
Finally I thought I would remind you of our little Doco on YouTube. Â My lovely friend across the hall reminded me when she said she watched it. Â It comes in two parts, please watch both 🙂
So we take a deep breath and feel like we are walking on air and egg shells!
Ecclesiastes 7:13-15Â (New International Version)
13 Consider what God has done:
Who can straighten
what he has made crooked?
14 When times are good, be happy;
but when times are bad, consider:
God has made the one
as well as the other.
Therefore, a man cannot discover
anything about his future.
14 Responses to “Take a deep breath”
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From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 24 Feb at 11:04 pm
Glad to hear that your living arrangements seem to be coming together, especially if potentially you don’t have to furnish it. The long hard road your family faces seems so daunting and it is amazing that in the midst of such a hard day that you’re still able to recount the days blessings and God’s riches.
# 24 Feb at 11:15 pm
praise God indeed, awesome post as always you guys rock, thinking and praying for you all,I watched the doc on utube well done, Aria is a very lucky little girl to have such fantastic, caring,loving beautiful parents God bless you both, take care, love to you all . . . big hugs
# 24 Feb at 11:36 pm
Miss you guys so much…Miss our chats Anita 🙂
Seeing you all on the doco made me cry…
GOD is SO Good as he continues to walk ahead and beside you in this journey. Love and thoughts and prayers always xxx
# 24 Feb at 11:46 pm
my turn to take a deep breath, the doco was beautiful!! Sniffing back the tears watching it, then saw you in tears Anita and couldnt sniff em back anymore. So, so glad you are all in the US together, and post transplant together. Sorry it’s been a hard day, it’s one huge, amazing battle thats for sure. Keeping you all in my thoughts,
Lis x
# 25 Feb at 1:34 am
the Skype call sounds really interesting 🙂
So pleased that you might have found a place to live
thanks for sharing those videos with us
they answered some questions I had 🙂 🙂
my prayers are with you all
Im so pleased Hamish could go with you all
HUGS
# 25 Feb at 1:53 am
Sorry it’s been another tough day but great, great progress! A journey of 100 miles always start with one step…
Much aroha from NZ
# 25 Feb at 2:28 am
We pray so much that God would give you both a steadfast heart and courage for each day.
with our love
Sam Seccombe
# 25 Feb at 6:47 am
Thank you so much for the directions to Utube, to see you all at home and life continuing ‘normally’ in N.Z.. So pleased too that Hamish was able to be with you throughout all of this, also Asher who will bring everything to a more normal level. Once again I add my heartfelt prayers and love to all the many others that are being said for your very special family. God certainly had a plan when He placed Aria in your home.
God bless you in such a way that those around you will see it and glorify Him.
Eve (England)
# 25 Feb at 7:00 am
Praying for peace and strength for you both, the tube will come out in time when Aria is stronger, praying that each day she will gain more strength and healing. Great that there is a possibility of an apartment. Nice you were able to skype the school children so many people are following your journey and praying. So great to be able to watch the clips on U tube again thanks
Lots of love
# 25 Feb at 8:01 am
I loved the videos. They made it all seem so real. I am just amazed at your strength and faith in God. I look forward to the posts each day. What a beautiful family you are. Prayers are being answered each day and what a testimony to the world.Love the TEXAN shirt.
# 25 Feb at 2:56 pm
you guys are such an inspiration – What a brave wee girl Aria is. My prayers are with you – – Yay for Nelson central school 🙂 kids are wonderful
# 25 Feb at 3:33 pm
Praying to God for renewed grace & strength for Anita & Hamish
and always praying for little Miss Aria & Asher
God Bless You All!!! … Big Hugs
# 25 Feb at 8:16 pm
Thanks for the Videos, and your commitment to posting your progress, as it must be the last thing you want to do after your days with Aria and Asher. You said, above, you will post the GOOD stuff. I am thinking that you can post some of the not.so.good stuff for us to pray over for you, and with you.
I Will continue to pray anyway.
# 25 Feb at 8:55 pm
Wow there are some great things in your update today. I loved hearing that Aria’s intestine is working – isn’t that just a miracle in itself! How amazing talking to a whole class too – what a great teacher getting that organised for her class.
I hope things get better for you all and that you are able to get settled into an apartment soon too. Take care, hugs xxx