Wednesday, March 26, 2008

Life can be really confusing

When we found out that we were pregnant we also found out my sister was four months pregnant. But she was informed that her baby, a girl, had a hole in her heart. We knew that she was going to need heart surgery after she was born but we weren't sure when and the extent of the problems. 

Zoe was born on Saturday. She stopped breathing a couple times but was stable in the NICU by Saturday afternoon. Dr's weren't sure why she stopped breathing and didn't think it was related to the heart condition. Zoe got better over the weekend and into Monday. Then on Tuesday we were given the biggest blow....... Zoe has Trisomy 18.  If you don't know much about it you can click on that link. Basically it's an extra chromosome. Much like Trisomy 21 (which is also known as Down Syndrome) but it's fatal. Couple days, maybe a couple months.

Today I met my niece Zoe. They let her leave the NICU because at this point she is off most machines. This way we can all be with her whenever we want. She has her own room on the children's floor. There are beds in the rooms for parents to stay. My dad, brother and the three oldest kids (high school age) got to hospital and we went to the family lounge with my mom. Greg (brother in law) brought in the little boys - Ethan and Aidan (4 and 3) and we waited. My sister got Greg to show him Zoe in her new room. Then they kinda took us in groups to see Zoe. I went in with my mom and Aidan and Ethan came running out of the room yelling,  "Auntie Tracey come see baby Zoe!" My sister was rocking Zoe. Aidan and Ethan were so excited to see their little sister. They were touching her and hugging her and kissing her. I lost it. I felt sick. I stayed in there for a bit, held her hand and I just couldn't keep it together so I left. I went back to the lounge and sobbed hysterically with my dad and brother. 

Everyone left to take kids to work etc. So I packed up my bag and went back into the room and sat with my sister and Zoe. My sister just rocked her and kissed her and rocked her more. We talked a bit. I helped her get settled in her room. I stayed until 6:00. Jaime and I are going to go tomorrow afternoon and bring dinner for my sis. 

The hospital said they can stay there as long as they need. They had to discuss with doctors if they want to treat infections, be put on life support etc. 

Jenny is doing good. I don't like using the word good, how can anyone be good? But she is being real strong. She just wants things as normal as they can be for her. Greg just keeps saying, we are living in today. We can't live knowing she is going to die. We have to love her and make her happy. 

She is beautiful. She is so small. She is long and skinny. She opens her eyes when she hears other people. She does have a loud cry. I just can't believe she is going to die. It just doesn't make any sense in my head. I just have to keep telling myself that she is going to a much better peaceful place and we will all be with her again in heaven. She gets to meet Jesus before any of us. 

Here is my brother in law's blog if you would like to see pictures of Zoe.


Anonymous said...

I'm so sorry you all have to go through this. I really can't even imagine how heartbreaking it is. God Bless You

Jer 29:11

Katy said...
This comment has been removed by the author.
Katy said...

I am so sorry! This must be so difficult and I cannot imagine the pain your family is feeling.

A few days ago there was an article featured on MSN about a couple facing a similar situation. Their baby was born with the very same condition. It always helps me to know I'm not alone. You can read about it here if you'd like.

God bless and keep you and your family.

P.S. Sorry I had to delete the previous post. My attempt to insert a link failed.

Anonymous said...

Thanks for sharing this during such a difficult time. I will keep them in my thoughts. If they'd be interested, you can pass this information along to them -

It's a foundation of photographers who photograph children and their families when the child is not expected to live. Libby used to do this before she moved. There are photographers who do this in every state.

Harmony said...

i am so sorry to hear about zoe, it means a lot to your sister that your here for her now.

our thoughts and prayers are with you and your family! hang in there!

ptg said...

oh my God...just reading your post makes me so incredibly sad, I cannot even fathom how you must be feeling.
I am so so heartbroken for you and your family. My prayers are with all of you so much.

Sarah said...

Tracey, I'm so sorry. I can't imagine what your sister and your whole entire family is going through. You will all be in my prayers though.

I'm not sure if it will help you or maybe her at some point, but there was a mom on the Nest who had a baby boy with Trisomy 13 (doctors seem to lump Trisomy 13 and 18 together because they have very similar symptoms, etc.). Her nest name is Pottershand if you ever want to page her or talk.

I'm so sorry Tracey.

Caitlin Domanico Photography said...

:( I'm not even sure how to comment on this post. Just want to tell you you're in my thoughts.

nina said...

dear tracey,

i can only second what anonymous said: now i lay me down to sleep is a fabulous organisation that works free of charge. please tell your sister about them. it might seem odd to get a professional photographer now, but it will help make beautiful memories.

there are a couple of families in the blogosphere who have or had children with trisomy 18 and who seem to be supporting each other very well. maybe you want to forward these urls to your sister as well:

sending energy and love your way.

Anonymous said...

I am so sorry. I just can't imagine and am praying for all of you. My sister bought me a book recently after I miscarried called ANGELS ON EARTH by Valle Wilhite Rischer. The ISBN is: 978-1602475359 and is a wonderful book helping kids understand a baby dying. It is so sweet and positive, but real.