2010 February - Aria MacDonald

Aria is doing well, bleeding has stopped.  She will wake and open her eyes and make eye contact when the nurses ‘mess with her’ – their words 🙂 She is sleeping just right to be comfortable.

She looks so beautiful to us.  Her body is so busy healing.

We have hope.  We always had hope with or without transplant.  But now we have selfish hope, the hope of keeping our darling girl with us.

Thank you God for answering our prayers.  We cried to you and you heard us.  Blessed be Your Name.

UPDATE: Aria is out of theater again, they fixed a number of minor bleeds. The Surgeon reports that her new organs are looking very good and starting to work- an improvement from when they first closed her up. She will still need one more surgery to clean up the abdominal cavity. This will happen in the next 48hrs most likely.

Please pray for Aria and her surgeon (who has done a long all night op).

She is bleeding a lot and they need to open her up and take a look.  They were going to do that anyway but it is sooner than expected.

Aria woke up a bit and looked at us and reached her arms up.  She looked a little confused and upset but ok.  She is AMAZING to me.  So beautiful and lovely.

Aria is stable and all her vitals are good, so she is doing well.  Just needing to keep her that way.

Will keep you posted

Aria is out of surgery and in PICU.

We spent time with Dr Botha post surgery and spoke to him at length.  It was harder than expected because of the mess that was her insides when they opened her up.  It took a long time to remove her organs and it was the hardest part.  Because her bowel was biopsied at 20cm lengths when she was first born there were little holes and it was stuck to her liver, spleen and abdominal cavity.  It was a real mess and junk everywhere from her bowel.  So she will need to be opened up again in 24/48 hours for a complete washout.  It is disappointing but not surprising.

The other thing was hooking up her new kidneys with her existing ones.  She now has 4 kidneys.  But it was tricky to get them connected so they ‘wired’ them in to her existing pipes.  Ok so it is a lot more complex than that but that is what I understood.

Hamish and I managed sleep and are feeling good.  We are feeling positive and grateful to so many people.  We have an amazing sense of peace.

There is a VERY VERY rough road ahead for Aria.  The toughest part of her journey is to come.  PLEASE KEEP PRAYING.  The surgery was the ‘easy’ part.

We have seen her but it is very busy in her room.  She looks good to me but lots of wires and tubes and she is on a vent to help her breathe.   She is pale but less yellow, that liver is starting to clear.

8am update: Last we heard they were still sewing everything back in, still going well. We’ve had some pretty decent sleep, feeling about ready to see our girl though.

Old organs are out and the new ones are being sewn in- everything is going great.  Ham and I have managed some sleep too.  🙂

PRAISE BE TO GOD!  He is GOOD!  Look and see what HE has done!

The 500th post contains the news we have been waiting for since the 23rd of June 2006.  The day we met Helen Evans and the day we knew we had a firm plan forward for Aria’s life

They just called from the OR and they are just starting the transplant now.  They have spent this time getting lines into Aria.  Not sure exactly what lines cause she had a central line and luer in her hand too.   But whatever needs to be done right?

Personally I feel a bit numb right now.  I know there are a lot of emotional people out there right now on our behalf.  Thank you so much for your caring.

My heart is heavy with thoughts I can’t process right now.

Another child’s organs are about to be placed into my daughter.  Wow.  Who is this child?  What happened?  Who are the parents?  Perhaps I might sound nosey but I just want to honour that child and his/her parents.  I have tasted their grief in those first early days with Aria, I can’t begin to imagine their pain.  Lift them high up in your prayers please.

Green Dolly is currently drying in the room.  The Nurse Practitioner told her to wash her cause as you know Green Dolly and Aria go thru everything together and she does get a bit grubby.  Aria will be immune suppressed so everything needs to be super clean.

It is 1am here and we don’t expect another update for 2 hours.  Me and Ham are going to try(!) to sleep.

THANK YOU for the messages- keep them coming!!

We have just dropped Aria off at the Operating Room doors! This is going to happen for us tonight!!

Aria was really happy as she made her way down to pre-op. She was saying “weee!” as her bed went down the corridor. She never fails to amaze us.

Please pray for the team as they care for Aria.

We are remarkably calm and at peace right now, knowing that this time is God’s appointed time for this and that he is in the operating room with Aria through all this and that he loves her and can help her more than we ever could.

We’ll try to keep you all posted as news comes to hand, the operation might take about six hours to complete so we’ll be trying to catch a few cat naps as we wait as it is 11pm here.

Thanks for all the prayers that have got us this far, and all those in a more awakeness friendly timezone, keep the prayers coming!

Well we’ve decided to share with the group that we are waiting to hear whether Aria is getting transplanted tonight.

Earlier today we received word that Aria had been offered some organs. Since then we have proceeded as if it is going to happen tonight. TONIGHT!!!!

We haven’t heard a definite confirmation that the organs are the right ones but there is a operating theater booked and everything is in place as if it will happen tonight.

This is obviously huge news and could be a enormous moment in Aria’s and our lives. We are not getting over excited/stressed/nervous/rejoicing until we here one way or the other. We are VERY hopeful though that we will be getting Aria transplanted tonight.

Please pray that the organs would be suitable and that things go well.

Please pray for the team who will perform the procedure.

Please pray for the family who has suffered a terrible loss and the families before them.

Now there’s a sentence you never thought you would read! 🙂

Today is the 5th of Feb in the US but the 6th of Feb in NZ.  So it is my sister’s American Birthday, Happy birthday Alexandra!!  And Waitangi Day in NZ.  For our American friends Waitangi Day is a national holiday marking the signing of the Treaty of Waitangi.  A treaty between the British Crown and some Maori Chiefs.  Perhaps that is all I will say about it because it is perhaps one of those political hot topics best not discussed.

The other day Aria and I were greeted by a sea of white coats and frowns at daily rounds.  Lovely.  Don’t get me started on those white coats, I detest them so.  Hamish laughs at me when I go on about the white coats although he does reckon I have a point.

ANYWAY the frowns were because Aria has been more sleepy than normal and this isn’t a good sign.  “What”!? I said  “No it is because she is awake till 11pm and sleeps until 11am and you always see her asleep at rounds”  Ok and Aria proved them wrong and woke up and had a GREAT day laughing, walking, talking, playing, joking, smiling.

But yesterday she slept the whole day.

So not sure what we are going to say to the white coats this morning.  Perhaps they are right but I don’t want to hear what they are saying.

Aria needs organs.  Soon.  Really soon.

Meanwhile it is snowing in Omaha, a beautiful scene as this Kiwi sits and types and stares out the window, roasting cause the heat in Aria’s room really needs to be turned down.

My daughter is safe in the arms of God and HE will do His perfect will with her.  Praise Him.  How does a mother write that knowing there is TWO possible outcomes for her girl.  No other way but through the power and strength given by God through your prayers.  I really believe it.  Praise Him.

And that job goes to Hamish this week.  I have been struck down in the ‘prime of lime’ (old Friends joke never mind) with a yucky cold.  In some ways it was inevitable because after all the stress over the past three/four months for the first time I let my defenses down and relaxed.  Hamish has been really awesome at taking both kids and letting me nap during the days.

Asher had his first full day at Preschool today and it went really well.  He is started to play more with the other kids and went around saying goodbye to each one when he left today.  Hamish picks him up and finds him happy and enjoying reading a book.  We are so happy he is doing well.  Today it seems like he belongs there and is fitting in just fine, which is pretty good for his 3rd time there.

Aria is good too.  Pretty sleepy lately but not hugely that it would be concerning.  She had a random temp spike last night of 38.5 but that was the first and last we heard of it and she was fine all day.  They all the tests and nothing has come of all the cultures

We met a lady today whose daughter had a bowel/liver/pancreas transplant at three and a half (hopefully like Aria) and know she is seven and doing awesome and so beautiful.  It was a really encouraging meeting more parents here.

Anyway better go.  thanks as always for checking in and your beautiful comments and prayers.

In the last few days another new activity has come into Aria’s life, Music Therapy. A lovely lady comes to sing and play to/with Aria, and Aria loves it.

Tonight was the second time that Aria has had a visit from the music lady and she was feeling much more able to join in and help. It was good to see because much of the day she had been a bit off, but after we fixed her nunu tube it really perked her up.

Tonight Aria played along to the lady’s songs on chiquitas, an ocean drum and a casaba. She counted and clapped and blinked along, although she did draw the line at singing.

We scheduled another visit for tomorrow evening so we could have Asher come along too. Aria is already looking forward to it saying “Music, Tuesday, yay”.

It’s great to see the hospital doing things to make kids stay in hospital more enjoyable, stimulating and challenging.

Aria is doing ok at the moment, Anita however has succumbed to a cold.

This is when things get a bit tricky, trying to manage things when everyone isn’t 100%.

I guess it was inevitable that at some stage colds would get one or more of us, however it does mean that things get a little more complicated. Luckily Asher is being a super good boy for us and making things easier for us to get Anita some rest.

Please pray for a quick recovery for Anita, that it wouldn’t spread around the family and for wisdom and strength to get through this time.