Life without SKYLA

Our little boy sent from our beautiful angel SKYLA

2008-12-04T11:53:00.000-08:00

Hi everyone, well i had my 18wk Morph scan today and everything is fantastic. They got a good look at his heart and all looks good. The sub chorionic hemorrhage that i had seems to have disappeared which is a big relief. They checked to see if he had 2 collarbones, i know that sounds weird but Skyla only had 1. Well he has 2. And no CDH!!! I am so happy. They also did some 3D pics of our little guy today. I ended up taking a photo of them with my phone. I am only 18wks 5days but the 3D pics turned out pretty good considering how early i am. There is two pictures of his face and an awsome one of him kneeling. It looks really cool, oh and a picture just to prove he really is a boy. LOL. They also cancelled the fetal echo that was planned for tuesday 16th Dec and made an appointment for Jan 20th, i will be 24wks by then so the cardiologist should be able to get a good look then but as far as they were concerned today, everything is perfect. Yay.

The closer it is getting to christmas the harder it seems to be getting. I am really missing my baby girl so much. Next Monday is my birthday too. Last year i had my little girl here with me and she was doing so well. We were at the ward and she wasnt even on any oxygen. We were thinking we were going home. God how i miss her so much. We love you Skyla. Thankyou for looking out for your little brother. I cant Wait til he is older so i can tell him all about his beautiful big sister SKYLA. What a brave girl you were and how strong you were. He will be so proud. We all are. Miss you bubba and we love you so much. Keep looking out for us up there. Cant wait til i see you again. Love mummy. xoxo

Back at the Hospital

2008-12-04T11:52:00.000-08:00

27TH November- A Big Day
Today was a really big day for us, and a hard one at that. We met with Skyla's Dr and social worker at 1pm to get her autopsy report. It was still Pulmonary Hypotension episode which caused her to arrest. Although they didnt find a syndrome or genetic problem they still think she did have one but just couldnt put a name to it.
Now onto our news. We are having a BABY!!!!! And a healthy one at that. We had a scan today. I am 16wks 5days. I am due May 9th which is one day before Mothers Day. The stomach and everything is exactly where it should be. Yay no CDH. I am so happy. They still have to check the heart out in more detail but so far everything looks great. Now onto the sex, GIRL or BOY. I asked them and they are 90% sure we are having a BOY!!!!!!!!!! Now all we have to do is come up with a name for our little man. I told Blake today that he is getting a little brother. He was happy but i know he really wanted a sister. The first thing he asked me was "Is he Healthy". Thats all we want. Then he gave me the biggest kiss and cuddle. I knew the baby had to be healthy especially with a big sister in heaven watching over us all. Thanks Skyla, we love you and miss you so much bubba. Thankyou for sending mummy, daddy and Blake a healthy bubby. We love you.God how i wish our little girl was still here to make our family complete. As the days pass, it doesnt get any easier. I miss her so much. Having a new bubby on the way is never gonna replace our little girl. I hope it does help to ease our pain a little.

Guard of Honour at Opening Ceremony Of Rugby League World Cup

2008-10-25T12:49:00.001-07:00

Just a quick note, i will update soon as to what has been going on over the last few weeks but i have some exciting news about Blake. Tonight is the opening ceremony of the Rugby League World Cup and Blake's rugby league team has been chosen to be in the Guard of Honour for the Australia verse New Zealand game. We are so excited. What an honour. I will try to take lots of photos and update whan i can. Dont know if they will show him on the TV but he will be wearing his Hurstville United clothes which are blue and white. Photos to come. Keep a look out for him.

Blake At District Athletics Carnival 100mtr sprint

2008-09-07T19:59:00.000-07:00

This is Blake racing in the 100mtr sprint today. He came about 5th i think. He is closest to the top of screen. He did pretty well. I think he would run quicker though if he stops lookin at his shadow. HEHE. Even when he plays rugby league and makes a break he is too busy watching his shadow. After his race was over we hung around for a bit then headed home. It was a good day though. We had nice weather which was good. It was meant to rain, lucky it didnt.

Fathers Day

2008-09-07T19:53:00.000-07:00

Yesterday was a very hard day for Skyla's daddy Joe. Yesterday was Fathers Day. He had been dreading this day for weeks. Fathers Day is the only special occasion that our sweet baby girl missed out on. She was here for all our birthdays, xmas, Easter and mothers Day. We got up in the morning and plodded round the house like we always do on Sundays. Every Sunday we all go and visit our special Angel. We always head off round lunch time. We stop off at the shops on the way and get flowers. We always get two lots. One from mummy and one from daddy. I try get in first to pick the prettiest ones. Hehe. Then we head out to the cemetry. Its only about 30min away so its not too far. We normally stay anywhere from 3omin to a few hours. I always get upset when we go there. Its still so hard. This weekend nanny and poppy got you a butterfly windmill and some flowers. I loved the windmill. I found a poem on the net and got some photos of Joe and Skyla and put them altogether in a frame for him. He liked it. The poem and some of the pics are on Skylas blog. I put them up the other day. Other than that we havent really been doing much. Im trying to get a job. Having no luck what so ever. Joe had to get needles today for his job cause where he is working. And Blake is just going to school. He made the school cricket team. That was really good.
We miss you our sweet baby girl. Not a day goes bye that we dont think about you. What i would do to have you hear again. We all miss you so so much Skyla. We love you hunny.
Love always and forever
Mummy, Daddy, and Blake. xoxoxox

Heaven gets another Angel

2008-08-20T18:58:00.000-07:00

William Ethan Morgan 19/08/08 - 20/08/08
I am deeply saddened this morning as i woke to an update that baby William Ethan Morgan had lost his fight against CDH. Please pray for his beautiful family as they grieve for their precious son. It brought back so many memories of the day my beautiful girl SKYLA became an angel too. We really need to find a cure for CDH. CDH is devastating. We have lost too many babies in the last three months. Skyla, Seth, Daniel and now little William. We have lost too many over the years. Life is just not fair. Please also pray for baby girl, Elliott Arcile Reed . She too was born on 19/08/08 and is begining her fight against CDH.

Sex and the City party

2008-08-17T00:00:00.001-07:00

This weekend one of our friends decided to have a sex and the city party. It was a fun day and night. It started 1pm Saturday. Our friend Pinky really went out of her way for us to have a great day. We started off drinking Cosmopolitans. They were so yummy. She even had a cocktail fountain. She also had cupcakes professionally made with shoes on them. For dessert we had a beautiful ice cream cake made out to be a hand bag. It was delicious. She bought shoes made out of chocolate with little chocolates in them. It was all too good to eat but we couldn't help ourselves. We really had fun. We had episodes of sex and the city running on TV whilst listening to some really good music. We then decided to head off to the RSL Club for some Karaoke. My friend Jenni and I were the only ones from our group to sing. It was so embarrassing. But at least i got up. I was pretty drunk by this time. Shed a few tears that night. One of Skyla's songs i played at her funeral came on. I miss her so much. Its still really hard. After the RSL we headed back to our local Pub. Spent the rest of the night there. We got home at 3am. I was surprised i lasted that long. Mind you, i wasnt drinking the whole night. Spent the last few hours on the waters. Hehehe.
My friend Jenni, who i was with this night has a beautiful baby girl. Her name is Matilda. She was born only two days before Skyla. Jen is one of my best mates and we spend alot of time together. We were pregnant together and had plans that our beautiful little girls would grow up to be best mates. Well that was our plan anyways. I thought it would be really hard being around Matilda, don't get me wrong, it is hard. I cry all the time but i find it easier being around Matilda than being around other babies. At least i can watch Matilda grow into a beautiful lady and see Skyla through Matilda's eyes. Matilda is the sweetest little girl with the most gorgeous blue eyes. She looks just like her daddy. Sorry Jen, but you didn't get a look in. I have added a video of Matilda and Skyla, their last playdate together.It was taken on the 20th May 2008. 25 days before we lost our beautiful girl. Skyla had so much fun that day. So did Matilda. Im just so glad they got to meet each other.

Blake's team with Sonny Bill Williams

2008-08-05T22:39:00.000-07:00

Blake's in the front, black jumper.

Blake meets NSW Rugby League Team

2008-08-01T18:54:00.000-07:00

These photos were taken whilst we were still in hospital with our little Angel ^^SKYLA^^ They are pretty cool pics of some of Australia's best Rugby League players. They are from this years NSW State Of Origin Team. Blake was so excited when he got to meet them all. Blake played his second last game today for this years season. They played against Earlwood Saints. They won 36 - 22. Blake scored a try again. He has scored a few tries this year. He has done really well. Good on ya darlin.

Blake playing bowling

2008-07-29T01:44:00.000-07:00

Blake went bowling in the holidays with me. He thought he was pretty good. But mummy was better. HaHaHa. I beat him. I won both games. He did come pretty close though but he did have bumper bowling.

Blake And Skyla

2008-07-29T01:14:00.000-07:00

Blake and Skyla's last video together

Skyla's last bath that i had recorded

Autopsy Results/ Prayers Needed

2008-07-23T22:51:00.000-07:00

Today i rang Skyla's pediatrician to see if her autopsy results wre in. He told us the main reason she passed away was from a Severe Pulmonary Hypertension episode which then caused her to go into Acute Heart Failure. He said her Lungs were small but not small enough that they were incompatible with life. Her Lungs showed patches of infections but not from a new infection. They were still healing from her older infections. It showed that she didn't have severe reflux. Her Kidneys were fine but her Liver was very swollen but that would have been caused by her Cardiac Arrest because all her blood was rushing to try and save her brain and heart. We wont get the final report until September i don't think. It will go into alot more detail and we will be having a meeting at the hospital so they will go through everything with us then.
Today i made an appointment to go and see a councillor, don't know how it will go but i guess it couldn't hurt. Last night i really lost it. I was in bed watching TV and i just started bawling my eyes out. I must of cried myself to sleep because next thing i knew it was morning. I wish i could dream about her. Instead i re-live the day over and over and over. The worst day of my life. Friday 13th June 2008.

Prayers need for my friends baby ZAC. He is in ICU where Skyla was. He is a very sick little boy at the moment. He has Wiskott Aldrich Syndrome. He has a blood and a immunity disorder. Today he is meant to be having Heart surgery. Please send some prayers his way. His blog is http://zacruglesswas.blogspot.com

My First Entry

2008-07-22T18:10:00.000-07:00

I created this blog about 1 and 1/2wks ago. I have started to write my first entry many a times but couldn't bring myself to post it. I don't even know what to write. I should be writing in Skyla's blog and letting everyone know about her and what she has been doing and how well she is going, but she isn't here with us anymore. Its not fair. I just want her back. I shouldn't have to write about my life after Skyla. The last few weeks has been very hard since loosing our precious baby girl. We miss her so much. Not much has been happening in the last few weeks. All i do is sit on the computer and look at pictures and videos of my little girl. I cry everyday. Its just so hard. I think im obsessed with her blog and other CDH babies blogs. I get so upset seeing other CDH babies blogs that aren't doing so well and then hearing about baby Seth and Daniel passing away. It broke my heart knowing other parents are going through what we went through. On the other hand it is great to see other babies that are doing so well. It makes me smile.
Not much else has been happened over the last few weeks. Joe started a new job last week. He is doing night shift at the moment. Blake is back at school since the holidays are now over. He is playing rugby league on Saturdays and he trains every Tuesdays and Thursdays. He only has a few more weeks left i think. His team is doing really well. His team was lucky enough to get selected to play before the final State Of Origin Rugby League game at Telstra Stadium at Homebush. He did pretty good. They also got to be Guard of Honour before the game. Blake and all his team mates wore black arm bands in memory of his beautiful little sister. She would have been so proud of him. We were so proud of him.
We are still waiting on Skyla's autopsy results, hopefully i will find out today. The Dr is hopefully gonna call and let us know but we will also be going back in to the hospital so that they can go through everything with us. Its gonna be hard going back there but its something that we have to do. I will update that once we know what really happened and if the found anything else. Thankyou again for everyones love and support throughout Skyla's journey, it has meant so much to us all.

Kristy, Joe and Blake xoxo