Talking and losing
Aria has lost TWO pieces of equipment today. Â First the wound vac is going which is great- one less piece of equipment to carry around. Â Sad though because we liked the wound nurse that visited three times a week. Â She was nice and Aria would blow her kisses and Aria doesn’t dish out kisses to health professionals all that often!
And finally ARIA IS LOSING HER CENTRAL LINE TODAY!!!!!!!!!!!!!!!!!!!
She has had a central access since she was days old and now all her food and meds go thru her new bowel just fine she doesn’t need it!!!!! Â completely awesome news
Hamish and I got in this morning and where met with listening and understanding ears from the team and a happier Aria.  Hamish did a great job advocating for Aria last night after I left, which makes me realise what a poor job I did.  And thankfully all that was relayed to the day shift.  Basically no clear answers really except the need to slow things down a bit.  There is still a difference of opinion I think and personally I would prefer her on a bit of O2 rather than regular room air but she is happier today so that is good.
The pee was down a tiny bit yesterday but her creatine and urea continue to trend down so that is great.
Kidneys- check. Â Wound vac- check. Â Vent- work in progress . Â Walking- very much a work in progress.
Thanks for the support on the post yesterday. Â I know it isn’t fun to read the downsides of our journey. Â I should clarify in case others thought that the question from my midwife wasn’t ‘oh my gosh you aren’t crying are you?’ Â Rather one of ‘hey are you ok are you going to cry?’ Â Sorry- I realise when I write these emotional posts that I don’t think straight and probably don’t communicate super well!
Anyway progress continues to march on with Aria’s health. Â Our nurse pointed out yesterday that perhaps this is weird for us as we spent so much time not making progress. Â Solid point- this does feel rushed. Â But this is God’s timing and we are overwhelmed at HIS goodness to us.
35 Responses to “Talking and losing”
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# 2 Jul at 2:18 pm
Wow two amazing milestones, that is awesome!!! Praise God
# 2 Jul at 2:31 pm
Praise the Lord for such wonderful progress. We are all praying for you at Redeemer and look forward to the time you can take Aria “home”
In Christ
Tony
# 2 Jul at 3:01 pm
Go Aria! Awesome news.
# 2 Jul at 3:40 pm
I agree with your nurse-it certainly is a weird time for you- even for us hearing it- after so long waiting and watching Aria making no/little progress- and times when it seemed that you might lose her- all this progress seems unusual- even a bit scary maybe- soon you will be heading out into the ‘real’ world again- and Aria will be doing thins she has never done before! WOW
# 2 Jul at 3:51 pm
Totally amazing and wonderful news to read on a rather cool but sunny (so far) Saturday morning in South Auckland, New Zealand. Praise and thanks to our God for his marvellous goodness and faithfulness to his children. Such a privilege to be able to pray for you all. It is the first website I check every morning and several times during the day for updates. Thanks for taking the time in your busy schedule to update us so we can pray more specifically. And thanks for dumping your moans on as all. We are honoured to received them and pray with you in all situations. You GO Aria, you are doing SOOOO great. Love to all.
# 2 Jul at 4:03 pm
All the progress sounds great but I can imagine how it is scary for you. Perhaps the medical staff forget that any change in routine for kids can be unsettling and maybe that’s part of why Aria is not herself – even good transitions can be stressful. It’s so important to talk talk talk to them about what’s going to happen and why and give them a little time to adjust to the idea instead of just walking in and removing bits of equipment she might believe she needs with no warning.
Sounds like everything’s heading in the right direction though!
# 2 Jul at 4:13 pm
Sending postive thoughts your way. x
# 2 Jul at 4:44 pm
great news
God is so good 🙂
# 2 Jul at 4:58 pm
I too agree with the others that it is so important that Aria be prepared for things that will be done so she is not surprised when they change things.She is just making so much progress so fast. How great that God is doing such marvelous works in her little body and it is so overwhelming to you all.Will just keep praying and giving thanks.
# 2 Jul at 5:02 pm
Awesome progress!
# 2 Jul at 5:19 pm
Terrific! Awesome! Amazing! Fantastic! Great progress Aria and all of you. It is very understandable that all this change will put Aria out of sorts with things like her vent, and wonderful that she has two such “in tune” parents to advocate for her. Love to you all.
# 2 Jul at 5:49 pm
When we were walking out to the parking garage the other day Cury said..”mom, when ever I come to this place my heart pounds so hard..like it’s going to go out of my chest.” I replied, “Does the hospital make you feel nervous?” Cury said “NO! I just get so excited to see God healing Aria!” Thank you for sharing the ups and downs with our family. Our God is a work in more ways than we will ever know. Praise Him!!!
# 2 Jul at 6:33 pm
Excited to read how God is answering our prayers!!!!!!!
# 2 Jul at 7:03 pm
Great news,you are doing sooooooooooooooooooo well miss Aria xxxx
# 2 Jul at 7:06 pm
Yea! Yea! Yea! SUCH great news!!!! (out of curiosity, how did they remove it? Big yank like Caed, or GA?
# 2 Jul at 7:08 pm
Isn’t it wonderful all the good news you are getting. I am sure it is of great comfort to you knowing that there is all this support for you back here in New Zealand. I know when I was battling for our son when he was in hospital all I asked for each day was to be given the strength and support to get thru each day and my last thought at night was to say thanks and ask for the same for tomorrow and it never ceased to amaze me that what ever we needed come our way somehow. Just a miracle. God Bless to you all.
# 2 Jul at 7:17 pm
I feel like Cury with my heart pounding to read how God is answering prayers for you all! Wow! No central line….that is great news (and I suppose a bit scary, too). And no wound vac! Terrific! Perhaps all the fireworks in the next few days can be celebration for Aria’s continuing improvement! Thanks be to God!
Carol for us both
# 2 Jul at 8:03 pm
Oh I am crying because I am just so happy to read your news of no central line – that is such a big deal! To say goodbye to something you have had forever is very very special! Yahoo well done Aria! I’m so glad that your issues are being resolved with the team, it is really hard to communicate clearly sometimes when you are mixed up inside, and tired and drained too. Well done you guys! You do have a great team supporting you too, who care and listen when needed.
# 2 Jul at 8:15 pm
WOW no central line! Now that sure is something to celerbrate! 🙂
Well done Aria 🙂
Anita, thankyou for writing the downs as well as the ups. It can’t all be glossy happy pictures, that just wouldn’t be “real”. Thankyou for being “real”! You and Hamish are awesome parents! 🙂
# 2 Jul at 8:32 pm
🙂 leaps and bounds = awesome awesome news – It’s wonderful am so glad you guys are sharing this journey = hugs from Nelson NZ
# 2 Jul at 8:37 pm
Thank you for your post yesterday Anita… Evie’s health has been stable these past few weeks… then we had to have x-rays and a blood draw this week and I felt like I got kicked in the stomach. I’ve gone soft. I’m going to need your strength when we go in for surgery! Thanks for sharing your heart.
# 2 Jul at 8:59 pm
Wonderful news
# 2 Jul at 9:41 pm
That is such awesome news! God is great! I’m so happy that she is doing better today, & that she is making such amazing progress! Anita, you don’t have to worry about typing emotional stuff, because we want to know the good & the bad. We want to know both sides, because we want to know how to pray for your family. So, don’t hesitate to tell us. 😉 I pray tomorrow goes even better! God Bless!
# 2 Jul at 9:52 pm
Thank you for being real Anita, its all the more amazing God God is doing with you all, not just in Aria’s life but yours and Hamishes and Ashers as well.He is using you all for the greater good to others. May God continue to be with you every minute of this journey and Wow what a journey.
# 2 Jul at 11:39 pm
Goodness, talk about leaps & bounds & what’s more in the right direction. During this journey you have all ridden the rollarcoaster in both direction…backwards, forwards & at times even stalled & that alone also creates massive emotional changes for all concerned esp Aria & Mum & Dad. Now it all seems to be in forward gear, plus at a sometimes hasty speed, so again the emotions change & have to adjust to keep up. Even just sitting reading creates these emotions & I’m not even there seeing it.
Teared up yesterday when I read how Aria was displaying what her body needed by wanting to sit up cos she knew it was hard to breathe laying down. She can’t vocalise yet but adapted a way of saying what her body needs & shows she is in tune with her body. An amazing little girl, plus keepimg you both on your toes reading her body language.
Anita if you weren’t sharing the ‘downs’ it would only build up inside you. Such a journey consists of both & have great admiration that you are so brave, gutsy & most of all so humble to be able to share the hard/down times, you are HUMAN & this is how you are able to keep yourself strong by sharing & releasing the pent up emotions to which I give you great credit.
Even as a nurse there are times we know what we have to do for a patient is not going to be pleasant & we too have to grit our teeth, hold back the tears to deal with it. We were taught not to get emotionally involved with patients & they are not our loved ones, but oh boy how hard that is seeing the pain we are causing, yet know it has to be done to help make things better etc.
So Anita & Hamish it is even harder for you both seeing all this done to you child over the years, yet still being strong to support & help/guide her thru. It tears me when I read how strong you have both been. YOU ARE BOTH AWESOME. I too had to fight back the tears when pricking a babys heel for the blood smear. I HATED it yet I wasn’t the mother. We are all humans, at times emotions are harder to deal with than the actual condition.
Sorry if this burble does not make sense to some. Just my insight of what an incredible family the Mc Donalds are. They are now reaping their harvest.
Love & blessings to you all
# 3 Jul at 2:00 am
Oh for awesome hehe! Miracles do happen and you have such great miracles to be thankful for family. Thank you for sharing your lives with us all. Bless the Lord o my soul amen!
# 3 Jul at 2:09 am
What awesome parents Aria has. Both of you. Anita I think you are amazing. As A mother of 3 children I am so often completely blown
away by your attitude and strength.
# 3 Jul at 2:35 am
How wonderful to lose the central line and the wound vac. Aria should feel a lot better without them. Praying as always for you all,
Judy.
# 3 Jul at 3:11 am
Just had to come back & add this as forgot before in my long burble.
Anita….I would like to correct you on one point where you said “you did a poor job yesterday”
NO NO NO YOU DID NOT. Pls take those words back. You are an unbelieveable Mum. As said before with things happening so fast you ALL are having to adjust.
Aria did the ‘talking’ by demonstrating that she was more comfy sitting up & you supported her wish. The rest was up to the medical team to figure out why & how to make her feel comgy & relaxed enuf to settle down.
Do not put yourself down, you overwhelm so many with your coping skills.
# 3 Jul at 4:18 am
“Did a poor job”? My bottom you did! You two are a team working for Aria, and ‘Team Aria’s Parents’ are doing a wonderful job collectively. She couldn’t have been blessed with better parents. You both have different strengths in different areas and the result is a double blessing for our Aria. So behave Mrs Anita! 😉
The news is all awesome and with the news that the Austin Hospital in Australia achieved it’s first intestinal transplant today for Brendan Cole after having replaced his small intestine, liver, pancreas and duodenum with the doctors saying that rejection control is almost equal to that of other organs, the future is just all good.
# 3 Jul at 7:52 pm
I don’t know if you remember me or not but my daughter, Emilee, was in the PICU at Omaha with Aria from Jan. thru March. My daughter has had a liver transplant and quite a few complications since. We passed your family in the hall quite a few times- my mother spoke a few times with the family that was there (grandparents, I think) that is how we found out about Aria. Since then I always incorporated Aria in my prayers for Emilee. I know exactly how you feel watching your baby be “tortured” and there is nothing you can do but pray. There was a time there in the PICU Emilee was so sick I would stare at her and cry…I know the heartache. I am so EXCITED that she (Aria) is doing well. We often wondered about her when we came home. I found your website from someone on Facebook- I check it daily. Congrats on your daughter ,Aria, and her wonderful milestones in her journey! We will continue to pray for Aria daily. God is GREAT! -Crystal White (if you ever want someone to talk with who knows the staff that you vent about feel free to contact me, nicolesgem@msn.com) :0) Have a wonderful week!
# 3 Jul at 8:07 pm
Fantastic results for you. I can relate entirely to the ‘heel prick’ kind of situation.
I have a normal 5 year old, a 3 year old with Cerebral Palsy and only just starting to walk in support boots, and pregnant with number 3. The things that upset parents of well children are completely different to those that have issues to fights and milestones for the ill/disabled child. Fight, fight, fight that is the only choice you have as I don’t believe we have it in us to sit back and as good as many professionals are they are only as good as we push them to be.
I follow your journey with interest and wish you all well.
# 4 Jul at 4:53 pm
What an incredible little girl. I am always so amazed at how you all take on every day with such strength. Aria is here because of you and Hamish and the world is a better place for that. Thank you for sharing your highs and lows. I also love reading the comments from so many people that share your world. Bx
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