Thursday, September 15, 2011

A Day

This is a sample of a day here. I write this not for sympathy or to throw a pity party but to help people understand what a mother in my situation faces in a day so that they will show the same love and compassion that you, my friends, have shown me.

6am - alarm goes off and I rejoice that I had something actually resembling sleep. I get up and force myself not to run pyjama clad through the hospital to Kaylee's side. I take my iron supplement, shower and tidy my room a bit quickly, knowing that I will have to move rooms today because Kaylee is six days old. I hope that my new room will have a working heater, hot water that takes less than ten minutes to come through and no hele pad outside the window. When I am all dressed I fill my bag with fruit and nuts, get my pumping gear and put it in the bag, add my journal/notebook/brain on paper, heat pack for helping let down when I am pumping, hook drink bottle on belt. I also grab my bag with my netbook and camera inside. I walk to the lifts and travel to the 7th floor. I force myself to go to the expressing room first where I sit for an hour expressing and reading my Bible and listening to uplifting music and worshiping. When I am finished I carefully wash and put away all my expressing gear, label my milk, gather my bits and pieces THEN I run to Kaylee's side. I check how she has gone in the night, chat to her a bit and touch and stroke her then sit down with my netbook to write e-mails to the other children.

sometime after 8am - My care manager Ali comes on duty and I talk through what plans are for the day. She is also a lactation consultant so I run through what I am doing with expressing and check for any tips she has to add. We get Kaylee out for some skin-to-skin contact. I sit with her and read her the Psalms that meant so much to me during my worship time.

At 9am I reluctantly put my baby back but feel awfully happy that I was able to stand up and put her down all by myself without getting tangled. They are about to take bloods (a heel prick style thing, Kaylee's heels are coverd in nicks due to repeated heel pricks for various tests) and while I feel like wrestling the person taking bloods to the floor and pumelling her to a pulp and screaming my frustration I turn and walk away to pump again, knowing that my job is to feed my baby. While I am pumping I talk on the phone to various support people about things that need to be done. I find out that a volunteer will be ready to help me change rooms when I am done. By the time I finish expressing, clean everything and put my milk away it is past ten. I find out that to get my key I need to go to the Ronald MacDonald house on the next block but thankfully the room will be within the hospital - praise God! I didn't fancy walking the streets on my own at 2am to bring Kaylee's milk to the ward. I get the key and chat a bit to the housing coordinator about our situation and how to deal with the key etc. Then I walk back to my old room and start packing up. The volunteer is a very nice lady who is probably in her 70's. She pushes a trolley full of stuff for me and I carry two bags but we still have to take another trip to get me all moved in. I am awfully thankful for my Pit Chief organising the help as I don't really have the brain power to find my room on my own right now!

11am I meet with the dietician about Kaylee. We discuss formula top up, types of formula, calorie supplementations and what we can do to help Kaylee grow strong quickly and I vow inwardly to work harder at getting enough milk for Kaylee so we only have to calorie supplement. I also talk to an occupational therepist about positioning Kaylee to best help her little body. We talk about preventing SIDS when Kaylee gets home and how I should best take care of her to prevent issues developing. We also talk about support for Kaylee's needs as she gets older (it is a relief to talk about her getting older) and about things like speech therepists, early intervention, timeline for diagnosis etc.

11:30 and I am late to express. I go and express and check in with support people, including my midwife back in Tassie, and call Jon to let him know our girl is going well.

12:30 I take Kaylee her milk. I stand and talk to her for a little and talk to the nurse. I say to the nurse that it feels like I am always walking away from Kaylee's side today. I go over to my room (ride the blue lifts to floor one, walk to the silver lifts, ride up to level 5, the lifts and hallways are often so full they feel like peek hour traffic.) and lay down to keep my feet from swelling anymore and eat something for lunch as I talk to a friend who may be taking me shopping for some clothes tomorrow.

1:30 back on the cardio ward expressing. I fall asleep expressing and am a little annoyed at the milk spilt on my top but rejoice that my body has moved on from "something resembling sleep" to ACTUAL sleep. When I am all cleaned up and Kaylee's milk is delivered I know I should go to bed but I can't bear to walk away again. Each step is like waxing my heart or one of those dog collars with the electric pulse going off. The nurse gives me an excuse to stay by telling me the lactation consultant will be in soon. I get out my netbook to finish writing to the other children and I fall asleep in the chair next to Kaylee's bed. When I wake up I find out the lactation consultant was on the wards but realise that I NEED to go to bed. I tell Kaylee's nurse then turn to walk away from my baby again.

3pm I lay down on my bed and set the timer for an hour and sleep blissfully!

4pm I wake up and go as fast as I can to express.

5pm I go in to take Kaylee's milk in to her. They have just finished attempting to put the long line in. I help clean the blood off Kaylee and talk to the doctor about what our next step is now that the long line didn't work. Kaylee is bundled into my arms and she is exhausted. I hold her and sing to her and comfort her as she sleeps in my arms. I am glad when she twitches in annoyance when the nurse has to change a sensor. I am relieved she still has enough energy and spunk to twitch. The nurse makes up a new bed, throwing the blood stained sheets in the wash. I wonder how much more blood is left in my baby.

I again force myself to put her down. I need to express again.

I meet the Mum of the baby in the next bed and her little daughter in the expressing room. It turns out that she is from Tassie too. They have been here for two months and will be here for at least another two.

I call Jon and let him know the plan about the central line and generally check in with him.

I go to McDonalds for tea and update my Blog and such. I talk to my big brother on the phone while I am doing that. I also start to organise some probiotic support to get lots of good bugs into me (and hopefully my milk) and treat Kaylee's nappy rash. I can't fix most of Kaylee's problems, but maybe I can do something about this one. I go up to my room and discover I have lost my key. I decide it is more important to express first so I head back. While I am expressing I talk to my other kids on the phone about their day and kiss them all goodnight. I also talk to Jon. When I have delivered Kaylee's milk I search for my key in both Kaylee's room and the expressing room. I go down and check that I haddn't dropped my key while I was eating tea and send three of my kid's e-mails (I talk to them at night and they read e-mails in the morning) but have to stop because my lap top is going flat. I realise my phone is too.
I head up to my room and use the phone outside the accomodation to ring around and find someone to let me in. I am trying to work out the logistics of how to deal with the lack of key and overnight expressing while I talk to Jon and I walk in to my room to find my key on my bag, thank you Lord! I continue talking to Jon and we briefly cover how we are going to prepare the kids for the fact that Kaylee will have special needs, what that means for our family, support available etc. The conversation is all too short but I know I have to sleep. We miss sleeping next to each other so much. Hanging up is hard. I unpack my stuff and tidy the bedroom. I can't find my phone charger. I call through to where my old room was and ask them to check for me. While I am waiting for them to call back I call Bek and let her know my phone may well be off overnight and tell her what my extention number is - it is midnight by this stage. They call back to say my charger and camera are at the ward clark's desk, I can get them in the morning.

I eat some porridge and take all my supplements to help my milk and munch on fruit from my fruit basket. I call the ward to let them know I found my key and see how Kaylee is doing. I thank Nadia for taking such good care of my baby and she replies that she is "Such a doll!" I tell her I will see her sometime before sunrise with some milk and she urges me to get some rest. I go and have a shower. After I have a shower I realise the key I had hung on the door handle so I wouldn't forget it is still hanging on the door handle. On the inside of the door. I call security to let me in again, standing in my t-shirt, underwear and towel. I promise them it will be the last time. I realise that I can't turn my phone off to conserve battery like I had planned, I need the alarm. I set the alarm for 4am so I can go and express again and finally lay down to sleep. It is 1am. I pray that I will have the energy to write two more emails before my children wake up.

"I lift my eyes unto the hills, where does my help come from? My help comes from the Lord, the maker of Heaven and earth." Psalm 121:1

Though He slay me, I will trust Him.

Thank you all so much for your words of encouragement, help, glimpses of normal (I love you Analene!) I am blessed beyond words. Here's to not having to change rooms and not locking myself out today.


Leisa (LMD from AussieHS) said...

Oh Jess, thankyou for giving us a glimpse into your world right now. We are keeping you and little Kaylee in our prayers. One morning this week I was praying for Kaylee, and the sky turned bright pink (sunrise) - it was just beautiful, and I thought totally appropriate for your new little princess.

Karen Collum said...

Hi Jess
We knew Jon from Tassie many years ago and know Shane & Bek too, so I feel like I also know you too :) Please know we'll be praying for Kaylee and the entire family. Our eldest son, Samuel, had open-heart surgery in 2009. He was 4 yo at the time and it was awful seeing him suffer so much, and yet now he is a thriving, lanky 6yo with a cheeky smile. I'm so glad you have friends supporting you and holding you up in prayer. Know that we are praying, even when you're too exhausted to.

Karen xx

Karen Collum said...

Oops! I didn't link to my website properly. It's if you want to find me and work out who we are :)

Jess said...

Thank you so much for you comments and prayers! I know who you are Karen, I have been watching the progress of your writing etc for a while through Jon following your FB. I met you briefly many years ago at some event or other and vaguely remember you from that too :) Thank you for your support.

Char said...

Just reading that made me feel exhausted!! I remember the craziness of the cycle from when Naomi was in the unit and it is nothing short of a miracle how you get through. As your days, so shall your strength be!!! Deut 33:25