Sleepless nights
Since Aria has been home sleep as been at a premium in this house. Â Last night she managed to pull of her stoma bag and wound dressing THREE TIMES!!! Â Messes each time to clean up in the middle of the night. Â Bribes, threats and discipline did nothing. Â She is determinded.
Unfortunately at night she has no voice to call us and I think she finds that hard. Â So she acts out to get our attention not realising pulling off her stuff doesn’t wake us up. Â The other thing she does is put her oxgyen on her head so her O2 stats drop, the machine alarms and thus we come running 2am, 4am, 6am etc etc. Â She used to pull off her toe probe but now that is taped to her toe and a sock is taped over that.
UPDATE- I should of said we have tried a bell. Â She rang it constantly all night. Â Our aim is to train her to sleep thru the night and settle herself back to sleep and mum and dad need sleep too. Â It is a very tricky balance of attenting to her needs and training her to her new environment.
So we have raided Target today for safety pins and outfits to ensure she can’t access her tummy. Â Still don’t have a plan for keep her o2 on her trach and not her head but we are working on it.
Basically she isn’t sleeping.  This morning I put her back to bed at 8am and Hamish took the big suitcases under his eyes back to bed too.  The TV was on, Asher was yelling, Nana and Poppa talking, the dishwasher on AND the door to her room was open just metres (yards) away from all this action AND SHE SLEPT like a ROCK until she was woken at 11am by the nurse visiting.  Seems like Aria is used to the hussle and bussle of the PICU and is needing to readjust to a quiet house at night.
I feel guilty I am not bouncing off the walls with excitement that Aria is home. Â Life is difficult I guess looking after a high needs little girl, constantly watching for signs she is sick and making sure supplies are ordered etc etc, doing meds, travelling to appointments etc etc. Â My mind goes constantly running thru everything. Â Both Hamish and I keep doing stupid things, mainly involving carseats mix ups and keys. Â That’s what happens when your mind races. Â But the Aria IS HOME and there is A LOT to be thankful for and I am but…….
The crazy thing is Christine is here doing most of the housework, tidying washing etc. Â There are meals to cook and organise but the reality is we aren’t even doing all the household stuff and we still aren’t managing so great. Â Mmmm.
Over all of this is the sadness and pain from what we have experienced the past 9 months.  Sadness/happiness at what Aria was and who she is now and vise versa.  The work that needs to be done.  Those  big questions at 3am when you are awake.  What happens now? When will we get back to NZ? And other thoughts like relationships that need to be mended and pain over sacrifices we have made to be here like my sisters wedding I am unlikely to be able to attend.  Sadness and healing that needs to take place.
I know- it is one of those blogs. Â Perhaps you are thinking- that’s nice- wheres the pics of Aria? Â We will post a happy pic filled post and update you all on her clinic appointment, first one tomorrow with the surgeons!
35 Responses to “Sleepless nights”
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# 21 Jul at 2:00 pm
Maybe a bell or something next to her bed might make her feel better about sleeping and she could get your attention if she needs you in the night, instead of dropping her oxygen? Hopefully things settle in to place for you, must be so hard thinking of all the next part of Aria’s journey.
All the best xx
# 21 Jul at 2:04 pm
We want to hear your WHOLE journey! Don’t worry about being positive or negative–just be yourself! We’ll just lift you up to God.
# 21 Jul at 2:19 pm
The racing mind thing happens to many of us when we ‘just’ have a birthday party to organise or an extra houseguest – you guys have sooooo much to think about, I can’t even begin to imagine how you accomplish it (and still manage to blog!) We are humbled by your amazing spirit and love and generosity and patience and want to hear whatever you want to share – not just the jubbly bits. Kia Kaha.
# 21 Jul at 2:50 pm
Would mini-cam be helpful for Aria to be able to see you and Hamish at night when she is awake? Just a thought. Please feel free to write anything you need to on the website. We are here for you in any way. Sending my love and prayers to you all.
In His love,
Carolyn O’Cain
# 21 Jul at 2:54 pm
So good you can say how it really is,things will get better,radio on low in Aria’s room might help her feel better about the quietness of the night.Happy snorring.God bless,xxxxx
# 21 Jul at 3:03 pm
Awww…sweetie. It’s good to be able to voice how you feel, even if it’s with us. (hugs) There are so many mixed feelings, we understand and I’m glad you’re sharing them with us instead of holding it all in. I’m very glad that Aria is home and it’s going to be rough, but remember how long and far you’ve all come. God’s looking out for you all. <3 Love yas..
# 21 Jul at 3:06 pm
I read the updates as they come through, but don’t often have time to comment. I just wanted to write to encourage you to hang in there, because things will improve, and God is watching over your precious family. I have seen the same feelings and things happening to my sister and brother-in-law as they manage their little girl with severe congenital heart disease, and juggle this with supporting each other and their two older boys. They are starting to come through it all, and you will too, despite the hurdles and speed wobbles that lie ahead.
What you are feeling is just so normal when you are tired, stressed, scared, wondering what will happen next, how you will cope. We know that God really does give grace and wisdom, and people around to help when we need them most. But even when we trust him absolutely, and know that he is sovereign, in control, and has given the privilege of parenting a miracle child, we still have these mixed feelings, and that’s OK. I’m reminded of how Job felt when God allowed Satan to touch his life. Job didn’t know why his calamities occurred, but God did, and he knew Job’s heart and never allowed more than he could just cope with, and after the calamities Job was blessed even more than in the earlier years.
Aria’s days were numbered by God before she was even conceived, and all that has happened – her survival until now, despite what the doctors thought, and even through 2 transplants – is a miracle, and we just praise God for this.
Your testimony through these blogs reaches so many in ways you could never have imagined, and we just keep praying for you all, that God will protect you and bless you.
# 21 Jul at 3:11 pm
Every day will get easier. Part of the sleep problem is probably Aria’s anti-rejection drugs – they seem to really play havoc with sleep patterns. It’s like having a newborn baby – you’ll have to try and sleep when she does (easier said than done I know with Asher there too!) Take all the help that is offered and try and get 5 minutes here and there for yourself. You’re all doing great!
# 21 Jul at 3:34 pm
Hey Anita,
I know where you are coming from. I’m pondering how a fifth child will fit into our already busy family.
You and Hamish are a great parenting team who come up with awesome ideas and ways to make your challenges more bearable and even lots of fun. It is a huge adjustment getting back to being a family living all together. I’m learning to approach things in baby steps. One little achievement each day is still progress. Reward yourself for them too.
At times like these I remember the Israelites in the desert. They had to work out how to cope with making food from manna, lots of new commandments to obey, tent living and having to pack up at a moments notice when the cloud or pillar of fire moved. A few posts ago you guys wrote it takes a village to raise a child. God has given you willing villagers to help you negotiate you time in the desert.
# 21 Jul at 3:58 pm
The blessing is this litlle girl is still sharing this earth with us. Thank god for our doctors and technology.
# 21 Jul at 4:04 pm
You as a family are just wonderful keep strong and take care. This is a journey you are all on keep sharing it with us all. Everything you are feeling is normal and healthy
# 21 Jul at 4:09 pm
What about some form of white noise – a cd or a fan in the background? Glad she’s home and doing well!
# 21 Jul at 4:18 pm
Keep being real people- we can’t encourage you and pray for you if we don’t know the real picture! Hope you find some ideas that help get this night-time sleep sorted. Maybe she does need some sort of noise happening to help her sleep?
# 21 Jul at 4:22 pm
So much love and understanding of your writing today. Thank you for opening your heart and sharing your life – your ‘normal’, which is hard… no need to talk it up when it’s tough. Lots of love and prayers for you all. X
# 21 Jul at 4:42 pm
Of course all of Team Aria LOVE the happy filled posts with tons of pics but we have walked this journey with you so far and continue to walk it knowing that we may read post that hurt our hearts for you guys… but that just makes us cheer harder and pray harder and love you guys more!! and we are doing just that! lots of love and prayers!
# 21 Jul at 4:49 pm
hi, im not sure if you read all of these comments, but i really feel for you reading todays post, and the blog about the physical therapy. it sounds almost like having a baby (i have a 7 yr old and a ten month old) . dont beat yourselves up, i think you first have to adjust to being home, and making that work, and alot of it is figuring things out, if its noise that helps her sleep then maybe a fan, or a radio, or something in her room would help? (white noise) also if you are getting up to her at night do what you would with an infant, no talking, no eye contact (as it is attention) but it sounds quite simply like she doesnt know how to sleep at home yet, dont despair, she will learn!! with the physical therapy thing, i wouldnt put too much pressure on yourselves, i guess just concentrate your energy on making homelife work,maybe even take a couple of weeks break if you can , eventually you will either get sick of doing things for her, or you wil notice that she is getting stronger and able to do the things herself and then you will be ready to push her alittle, but id say that just coming home is a massive enough adventure for her and you all to get used to, so dont beat yourself up, or push yourselves too far too soon. things will happen in thier own time. sleep deprivation makes life hard, and eveything seems worse, and upsetting, so hopefully you get on top of that one, then things will seem a whole lot sunnier. good luck! 🙂
# 21 Jul at 4:57 pm
the other thing that might help, not only the sleeping, but just moods adn closeness in general, is to spend as much time as you can during the day with her, hanging out,and hugging her, and jsut being together lots during ‘awake time’. good luck . and its so so so so so great to hear she has come through this transplant and is on the road to recovery
# 21 Jul at 5:37 pm
After being in ICU for 7 mos. and lights on 24-7 and nurses in and out I don’t see how Aria can have any
sleep pattern established plus meds she has been on.
We will be praying especially for rest for all of you
and have faith this too shall pass.
# 21 Jul at 6:01 pm
I’ve been reading your blog for months but I’ve never commented. My husband and I took care of my mother who was on a vent for three years in our home. We had baby monitors all over the place but our live-in “helper” who turned out not to be much help, gave my mother a cowbell and she did what Aria is doing ie; ringing it all night just for attention. Needless to say I ditched that bell in a hurry. You’re right in that you need to train her to sleep through the night like she was a wee baby again. She’s used to the hustle and bustle of the hospital so night and day don’t mean much to her as they didn’t to my mother.
I know it’s good to have her home but I also know it’s stressful. Feel free to vent the bad stuff as well as the good or you’ll go crazy!
# 21 Jul at 6:51 pm
You wouldn’t be human is you didn’t have these feelings. Allow them, accept them and grow with them. Sleepless nights are hard for anyone except perhaps Aria, but IT WILL COME RIGHT.
# 21 Jul at 7:13 pm
This is an unexpected bump in the road to full health. Are you allowed to give her something natural to relax her and make her sleepy??!!
Hugs for all you brave folk.
# 21 Jul at 7:37 pm
Please don’t feel guilty about having mixed feelings about your new situation! I came across a thread online recently about infertility and a lot of mothers were saying they felt really guilty, after years of trying to have a baby, about admitting that they had PPD or simply found life with a newborn a struggle. Because of course, if they dared voice a complaint everyone would tsk-tsk and say “Oh, you should be just be glad you have a baby”. Which wasn’t very helpful. :p
Sounds like the Aria-situation is the same. Just because having her home is a Good Thing doesn’t mean there won’t be struggles and frustrations! And it’s better to be honest about them than pretending everything is roses and sunshine.
Would a white noise machine help her sleep at night, do you think? Or leaving a dehumdifier or fan on, something that makes continuous low-level noise? I know of one mum who recorded the vacuum cleaner and played the tape at night to help her baby sleep!
# 21 Jul at 7:50 pm
It is so tough to stay positive when you are exhausted….. but we do know that it is likely Aria will settle into her new home routine and eventually you will be ‘allowed’ to sleep! I do so hope that this is sooner rather than later for you guys…. I sure do throw my toys when I am tired and grouchy!
You are doing amazing, just get through each day, a lot can change in 24 hours 🙂 (for the better I mean of course xxx)
# 21 Jul at 8:13 pm
Oh Sweetie – I very much feel for you. It’s not like you walked out of hospital with a healthy child, you have taken home your very sick child who is still recovering. That recovery will happen but it takes time to adjust. You will need time too to get into a routine, to find your way with her new medications and cares. But the big difference now is that you are caring for a healing child and not a deteriorating child. It does take a long time to stop ‘holding your breath’ at every noise she makes, just in case … This healing for all of you will take place slowly and one day you will realise that you haven’t got up in the night to check she is still breathing or havent’ though about one of your worries for a while. Believe me, it does happen, life starts to feel do-able, you start to gain back family times again, your child starts to look and feel more like the lovely child they were and it does all come together.
Always feel you can blog or talk about this – we care.
# 21 Jul at 8:25 pm
just had a another thought for sleep training. We have Momo the monkey not sure if u have heard of him its a monkey clock that shuts his eyes and doesn’t open them until morning or whenever you set him to ‘wake up’ our now 3yr old started using Momo when she was 2. In the night she would wake up look at him and see Momo was still sleeping and so should she, and was much happier getting up when she knew she was allowed to be up and not growled at by us to go back to sleep by us.
just a thought
# 21 Jul at 9:07 pm
God Bless you & Hamish! I can’t imagine what it’s like to be you! You have handled everything amazingly well, with all that your family has been through! I highly doubt I could handle your situation. I guess with every good thing, there is one bad thing. I’m sure you know that more than most people. If I could, I would fly out to Nebraska to help you! I pray you will get more sleep tonight! God Bless!
# 21 Jul at 9:42 pm
It must be just hard when you are doing your very best but still it is a struggle You have come so far and there have been so many ups and downs. You are amazing Anita sleep when you can. The idea of a radio may help a bit. xx
# 21 Jul at 9:56 pm
Mark was only in hosp 2 nights in the weekend and already he couldn’t sleep for a couple of nights after he came home cause he was waking every 4 hours in anticipation of the nurse coming in to take his blood pressure (it drove him nuts)! so can only imagine how much worse it is for Aria. Man I am so praying she starts sleeping better soon though. Can’t imagine how sleep deprived you guys must be. Yay for Christine being there! 🙂 I so wish i could help after they leave 🙁 but by the sounds of it you guys have awesome friends over there who i’m sure will be willing to help out if you ask. Do you get home care/help over there?
# 21 Jul at 10:01 pm
Hi Anita and Hamish,
Sorry to say your situation is quite normal. It is an expected thing to loose sleep over Aria being at home, after all you have taken on the work of doctors and nurses who have worked 24 hours around the clock each day. Then now its your child at home, could you still have some home help at night while you sleep (a night nurse for now until she gets used to being home and in a quiet place). I empahise with you and when youre not sleeping I find it hard also as your intercessor to sleep, so we will give thanks to Papa for good sounding sleep for you and for me now and always amen….
# 21 Jul at 10:36 pm
I, too, found the transition to home to be very difficult (not that we were there for very long!). It’s supposed to be great & it’s so hard to reconcile the fact that it doesn’t feel “great” when it’s all you’ve been working towards & praying for for so long. You’ve left your support system, though – the family down the hall, the nurses, the doctors. It was hard to see it when you were ‘stuck’ in that PICU, but you relied on those relationships more than you knew. They are, in many ways, the only people who really understand this journey you are on. It’s a big adjustment moving out of the hospital. You no longer have the obvious support of 24 hour nursing care (not to mention a cafeteria :)), but even more so you no longer have the emotional support. It’s huge – it’s how we find the strength to continue putting one foot in front of the other, it’s how we find the energy to make it through the day. Give yourself time, it will get better… I’m praying for peace (& sleep!) through this difficult transition. Love you guys 🙂
# 21 Jul at 11:42 pm
Do you think taking turns with Hamish and you rooming in with Aria overnight so she doesn’t feel so alone. After 2 years out of hospital my husband still has the radio on all night. I think it’s just the quiet he doesn’t like, so perhaps the radio might help Aria also. Please keep pouring out your feelings to us we can take it.
Blessings, Judy.
# 22 Jul at 1:37 am
Hi
Are you entitled to any services over there, is there someone that can do the grave yard shift? You have to get your sleep somehow. Best of luck!!!! It’s not easy………
# 22 Jul at 2:58 am
You guys rock. Just saying.
# 22 Jul at 3:52 am
How I empathise with you in your sleep deprived state.
That little miracle slipped out of picu thus bypassing the ward,(something I never saw in all my nursing days…true!) so she never got to experience ‘lights out’ for even short periods.
Time will change this rut of no sleep, maybe even along with some of the suggestions already made.
Hang in their guys you are awesome.
# 22 Jul at 2:26 pm
Hi Anita, Hamish and family. Never feel bad about posting a blah or down hearted blog! While many of us who follow your posts will never be able to comprehend a fraction of what you are all going through we realise that the low times, the hard times, the niggles in the back of your mind when you’re awake at 4 in the morning etc. are all struggles which pile on top of everything else for you.
I know you must find it hard to write when you feel downhearted or struggling to put on a happy face; dont! As a Christian it is difficult to appear as though you are complaining in the light of God’s wonderful grace and provision. The reality is that you are only human and the physical, emotional and yes, even spiritual stress which has been placed on you must be overwhelming at times. We know how thankful you all are to our God and your complete trust in Him; this is what we remember when you feel the need to vent! Blessings to you all, and I’m so pleased that you are all together again as a family.