Sunday, September 11, 2011

Our Journey to PICU - part 1

For those who don't know, I am currently at the Royal Children's Hospital in Melbourne with our newest daughter. The prognosis is looking unimaginably better than it first appeared but there is likely a long road ahead of us. What it looks like and where it leads is to God's Glory and so long as it involves being the mother of Kaylee Grace it is well worth any bumps on the road.

This my recollection of the story of our journey to Paediatrics Intensive Care Unit. I will finish it over the next few days and weeks as I am able.

Kaylee Grace Guest was born 10:15am 8/9/2011.

She was born at the Birth Centre, delivered by the same midwife who has delivered 5 of my children now and has become family to us. Jean, who has also attended two of my other births was also there and of course Jon was there too. In between contractions leading up to crowning I was singing "Jesus Loves Me" with the CD I had playing and Kaylee was greeted by her midwives and mother singing hymns (which sounds terribly hippy and crunchy, but it was the most natural and beautiful thing in the world!). Her birth was amazing and wonderful (and hard work! - but only 2.25 hours of it). She breathed well within a minute of birth and pinked up nicely. I will post her birth story one day (I did write it down in a writing Journal sent to me by a dear friend) but this is the story of what happened after that.

The first thing we noticed about Kaylee is that she was small. The second thing was that she was beautiful. And amazing. And wonderful. Amidst all that I noticed there are some differences in my precious girl. She has some hairy patches on her upper thighs, a mono-brow (a delicate and beautiful one, she pulls it off where many would fail), rolls of skin on the back of her neck, creases accross her palms, small hands and feet for her size, a horse and squeeky cry that you can hardly hear and a few other bits and bobs. She also has Anna's lips, tiny fingernails and a mop of curly hair - I just want to make it clear here that she is Kaylee - who has many wonderful, normal, unique, quirky, unusual and completely ordinary features all mixed in together. But it cannĂ³t be avoided that some of these features indicate there may be some "congenital abnormality". What that is, we don't know yet. What I do know is that she is my daughter.
The "Abnormal" features (which makes her sound like she if from X-men, need to get her a costume I think) were not focused on by any of us who noticed them and we simply enjoyed having Kaylee as Kaylee for a while. We had a few hours of cuddles, phoned everyone to let them know she was born, did all the "After a birth" stuff (weighing, cleaning me up etc.) had lunch and then wandered accross to the hospital so that Kaylee could get checked out.

The Peds Registrar examined her and decided to suction out a little bit of stuff from her mouth. This made Kaylee choke. Then turn blue. Panic, room filling with people, recussitation gear, Jon and I clinging together terrified and shaking and furious and praying as Anna watched over us and prayed silent prayers but Kaylee came good again after a bit of work and everything calmed down to a degree. The fuss bought in the Peds big wig Dr who checked Kaylee out and I changed Kaylee's first nappy grasping at some type of normalcy amid the chaos that had just happened. After a bit we were all sitting down again and had all taken a deep breath while I glowered at the poor Registrar who had suctioned Kaylee - we later made up and became friends but at the time I could have choked her. Dr Baylee - the big wig Dr - asked me what I had noticed about Kaylee. I gave a run down of the features I had noticed then added that I also noticed she is beautiful, my daughter and she is simply Kaylee - who we are getting to know. He nodded and in his quiet and slow way informed me that he felt that she needed close monitoring and thought she needed to be admitted. Immediately I asked if I could be rooming in with her and was told that she would probably need closer monitoring than that. I reeled a bit at that but nodded consent as I absorbed the information. The next few minutes were a bit of a blur but I do remember Robyn, the nurse who had arrived amid the earlier panic, stepping forward and suggesting that Kaylee be put into a cot in a room where I could sleep on the fold out bed next to her. I could have kissed her. Kaylee was bundled into our arms and Jon and I sat together with her alone and cried, held each other, held her, prayed wordless prayers and reeled for a few moments.

We all went into the neonatal ward and Kaylee was put into a box cot, I was introduced to Daniel who would be our nurse and various arrangements started being made. Jon and I were organising the care of the other children until he could get home, sorting out my stuff that I would need and all the logistical issues, the nursing staff were sorting out Kaylee, the doctors were sorting out what they needed to and there was a general blur of activity. Everyone was kind and compassionate. I can't remember why Kaylee was taken into the ICU unit at first - perhaps to do some tests or put in a drip or prepare for X-rays or something - but she stopped breathing again. She did not need intensive resuscitation but it became clear that she would need to stay in the ICU with her own personal attendant and various monitors. Thankfully, I could stay on the fold out chair down the hall so there was no locked door between my baby and I for our first night.

That first night it felt like every time I left the room something new happened or there was some new bit of information to process or something else I needed to do. I had to keep reminding myself to sit down, drink water, try and express a bit of clostrum (I was only getting tiny drips which I would rub on Kaylee's lips). I sang to her, especially when her oxygen levels started to drop. She would pick up a bit when I sang Jesus Loves Me. One minute I would be composed and the next I would have tears running down my face as I sang to her. But whatever it was I just kept praying and singing. The nurses (who I got to know very well while we were there) would quietly explain everything to me. The doctors were gentle and kind and the Registrar won me over totally when she got a drip into Kaylee first go (not easy in a 5 pound 4 baby who has abnormally small hands and feet!). And they kept attaching machine after machine. By the time I went to bed that night Kaylee had a breathing contraption on which made her look like she was about to go snorkeling to inflate her lungs out. I finally forced myself to go to bed.

I woke up about 3am and could not sleep so I got up and tried to express again. On going back to bed I sobbed so hard the muscles in my abdomen cramped up so I got up and sat by Kaylee with my writing journal sent to me by a friend in America. Writing Kaylee's bith story into it made me feel like my friend from America – who I only know online - was holding me and praying for me. I wrote for about four hours as I watched over my precious girl, singing to her every time her oxygen levels dipped or she started to try and cry.

I went out to get some breakfast in the maternity unit. I struggled with a cereal box and made it explode cereal everywhere but managed to sort myself out some food. I smiled at all the babies in there which were so small compared to my previous babies and so big compared to Kaylee. I struck up a conversation with one lovely, particularly shell-shocked looking new Mum. She told me her baby had been overdue and I could tell by her waddle and the reeling look in her eye that the birth had not been easy. She looked so young and I just wanted to hold her and tell her she'd be OK! I was wistful when I heard other babies cry, wishing mine could cry like that.
I went back in and tried to get some sleep. I probably slept for about an hour and a half before getting up and going to sit in next to Kaylee during "Grand Rounds" where Kaylee was presented to all the doctors. Anna came in and we talked and she checked me over and reminded me of all the things I need to do to take care of me (at this point I kept forgetting I had given birth less than 24 hours before). Various tests, x-rays, ultra-sounds, drugs. Phone calls home to my kids, to Jon. Through the course of the day it became clear that Kaylee would have to go to Launceston or Hobart. The inital diagnosis on her heart was making it look like Melbourne - potentially for weeks or months. Logistics, drugs, explaining, reeling, tears running down face, expressing, telling myself to drink and go to the toilet and shower.

To be continued...part 2


HomeGrownKids said...

Oh Jess,

((((( hugs )))))

You, the children, your dh and Kaylee have been in my thoughts and prayers since I heard of her birth.

*Congratulations* are in order... *Welcome little Kaylee* is in order... and to give thanks to the Lord, for He is good and His steadfast love endures forever can never be said enough.

Praying for you all... and for strength and health to be given to Kaylee.

Leisa (LMD from AussieHS) said...

Oh Jess! Congratulations on the birth of little Kaylee! We're praying for strength and peace for all of you and God's wisdom for the doctors.

Jess, I am in melbourne, if there is anything I can do... if you need meals, clothes, funds, help of any kind - please let me know if I can help, it would be an honour.

Michelle Downunder said...

Thanks for sharing Jess. I pray that God will continue to carry you through this time and that you will see his supernatural hand in all of this.

Anonymous said...

Hi Jess,

Thought and prayers are with you and your little Kaylee.

Melbourne PICU term are wonderful.

We had our journey in 2008, very much like you write.

God be with you

Anonymous said...

Hey Jess,
as another "friend" who doesn't really know you I can't say a lot, but as a sister in Christ I'll pray for you and your family. Congrats on the birth of Kaylee and may she bring much joy into your life. May God strenghten you all in faith as you trust Him during this time.
Missy (also via AHS)

Seaweed and Raine said...

I just sent you an email. Thank you for the photo link - Kaylee is beautiful!!!

Call me ANY time. Praying still. God has his Hand over this one. The journey is not always known, but God has a plan, and His love and strength will keep you standing.

Kez Frances said...

Hello Jess and Jon,
Firstly, congratulations on the arrival of little Kaylee. May you be abundantly blessed as you welcome this beautiful God-given bundle of blessings into your family. My girls have been keeping me updated and have just sent me your blog link. My prayers are with you sweet mother as you watch over your precious baby. Love and blessings
Kez (Kate and Bek's Mum.)

Leisa (LMD from AussieHS) said...

Jess, sorry I didn't leave any way to contact me if you do need some help, you can pm me through AussieHS, or email me at

Anonymous said...

Congratulations Jess on your beautiful little girl. We are thinking of you here and sending you all the best wishes and prayers we can.


skimbly said...

Congratulations on the birth of baby Kaylee!

We're in (outer west) Melbourne too - if we can help with food, transport, a place to stay (including if, at some point, the rest of your family comes over)... just say the word (I'm skimbly on Aussiehomeschool). Praying for your whole family to continue to have faith, courage, strength and comfort through this difficult journey with Kaylee - and for her healing.

With bucketloads of love,

Mrs. Mathewson said...

Oh reading this brings back many memories, as 5 out of my 6 have all spent time in NICU, and I know the doctors and nurses you are talking about, just want to come and hug you. We are praying for you and all your lovelies.
Christina Mathewson

Bek said...

The amount of emotions you must be going through right now. Such wonderful news on the safe arrival of your little princess. I pray God's healing hand is upon Kaylee and your family are joined together in your home sooner than you expect. The Lord is watching over you all. (((hugs)))

DaughterofEve said...

((((Jess)))) A hard and beautiful road; such mixed feelings. I am glad you are all in His hand and I hope that you tuck in and feel him close.

Adding to other Melbournites - if there's anything we can do, please contact us. Don't be shy, we truly wish we could bless you practically. You know where to find me :)

Love from the 'other' Jess (DaughterofEve)

Anonymous said...

We haven't met, but it seems we know an awful lot of the same people! Pleased to meet you!

Bek has been keeping us updated on facebook and I just want to let you know that there are prayers coming your family's way from WA as well!

- Jenn King

Anonymous said...

Hi Jess.

Glad you guys are doing well, all things considered. Congratulations for Kaylee. Praying for you and wishing I could do more, but Brisbane is a very long way away.

Thinking of you all.


Michelle Reid said...

Hello Jess (and Jon),
Congratulations on the birth of your brand new little girl but so sorry to hear of the struggle she is having at the moment. Our thoughts and prayers are with you and the family. We know God cares for and loves little Kaylee so much and will only have the very best for her in His planning and time. May he carry you all safely in His arms of love and understanding through this difficult time and that you may continually give praise and honour to His name.
Many blessings to you, Michelle Reid