Feeding Tube Came Out!

So this morning we learned that Sophia's feeding tube had fallen out during the night. The balloon that holds it in place had a leak in it. And...apparently...our stomach tissue can fix a hole like REALLY fast! I've heard from Mom's of "tubies" that eventually it would pop out or accidentally get pulled out and I'd have to deal with it. I didn't think it was a big deal at first. I figured it was like an earring, keep the stud in for six weeks and the hole stays open. NOT the case! I learned this morning that... half an hour to and hour... and the thing is closed! Poor little girl has to go to surgery tomorrow morning to get it reopened :-( in the meantime she's got this darn thing back up her nose :-(

All clean and ready for surgery!

Babbling, giggling, pulling herself up, and imitating me!

Little Sophia has had an incredible couple of days :-) we still haven't figured out her reflux but in the meantime we've backed off on feedings and she's feeling much better :-) it's only a temporary solution though, obviously we can't do that forever:-( anyways yesterday and today I got adorable videos of her babbling, giggling, grasping my thumbs and pulling herself up, and imitating my kissy noises by clicking her tongue :-) I'll try to post them to YouTube soon :-) this girl never ceases to amaze me :-)

I however have been feeling quite under the weather so say a little prayer that Sophie doesn't get what I have:-( I'm hoping I'm better before her antibiotics run out.

Look who loves to mow on her biscuits!

6 months today!

So my dear friend Kristin made cupcakes for Sophie on Saturday :-) The beach was her six month birthday PARTY :-) Today however does mark the actual day that she turns 6 months old, so Sarah wanted to make a cake :-) she did it all by herself, and it still amazes me that my eldest daughter is old enough to bake a cake! Kids grow too fast :-)

 Tonight ... Sophia's first chocolate :-)

We made it home!

We made it home safe and sound. Traveling with 3 children and a disabled baby was not easy. Thank goodness Mason came along! It will probably be a while before we are brave enough to make that trek again ;-) It was very worth it though. I showed Michael where he was born...Max fell completely in love with the ocean...and we took Sophia to the same beach where I have brought ALL of my babies :-)

 Extra bonus I got to show my hubby some of my favorite places and introduce him to a couple of my favorite people ;-)

More photos to come...

I can't believe we made it to the beach!

Today we went to the beach :-) we made beautiful memories today :-) and no matter what happens in the future this day is logged for eternity. we will always have this day :-)

It's just a matter of fact / update-she's doing better!

It's hard planning a funeral instead of planning her future. But it's just a matter of fact.We talk about it with the kids matter of factly. The same way we talk about families being together forever.

A couple weeks ago we stopped by a church I've selected for Sophia's funeral. I wanted to scope out the layout and get a feel for the size and if it would work. I took the kids with me. The worker opened the building and casually asked what kind of event I was planning. A wedding? A farewell? I was holding Sophia. I candidly answered explaining that she is doing very well for her condition right now. It was a good day for it. Because that day she was so healthy it didn't seem like she's going anywhere.

I've read that believing that death won't happen will make grieving very difficult. The kids knew why we were there and I hope absorbing the stress in small appropriate doses will be helpful overall. I'm also hoping that planning each step and knowing what will happen... and what it will look like... will help us cope. On the day of the funeral we will be going to a place that we've been before. Hopefully that will make the children feel a little more comfortable. We didn't ruminate or wallow. It wasn't melodramatic. It was super casual. A pit stop. An errand. It was even pleasant. I told the worker I am blogging about our experience with Sophia and asked if she would take our picture on the church bench.

I am planning her funeral. But we still hope and pray every day for our dear Sophia. We want her here as long as we can have her. She's so bubbly. I love watching the children take turns playing with her. I'm so glad she smiles and that we know she is happy. She brightens our lives every day :-)

Update: Sophia's antibiotics are working! She is doing SO much better! We still desperately need to figure out her severe reflux, but we are no longer worried about pnemonia! :-) :-) :-) Now let's all pray that we can take her to the ocean this weekend!!!

Still sick :-(

Poor Sophie is still vomiting and very congested. Please pray. We really want her to get better.

In Grandma's Arms

Sophia slept for hours in Grandma May's arms today. Thank goodness because she's been having a really tough time. We got her some antibiotics tonight. I prayed that they will help. I've just felt so sorry for her all this coughing and heaving. I hope her body can get better.

Journal Entry from March 10th

Entry from when Sophia was 10days old and in the NICU. "When I wake up in the morning the first wave of emotions hits hard....this isn't just a nightmare. My second feeling? I'm so glad my phone didn't ring in the night."

Fast forward 5 months and I'm still grateful every morning that my daughter is still alive and that we get another day. I still know that in the next life this will all be explained. And that my joy will be full. Right now I'm just grateful for another day :-)

Saving Her Life Daily

The last week it's felt like I'm saving her life everyday. Sophia is coughing a lot from the throw up that she's aspirated over the last week. I've had to use the suction machine more times in the last week then I have in her entire life. It's been pretty scary. I have hope that just like with the seizures we'll figure this out and get ahead of it. I don't think I've seen a seizure in over a month. Despite the stress we're still finding Beautiful Moments everyday :-) You should have seen the kids gathered around her on the blanket on the lawn today. I should have snapped a picture of that too but I didn't want to miss out on the moment myself by running off to get my camera :-)

Girls Night!

First girls night (out) since Sophia was born :-) I thought of her most of the time and watched the nanny cam often. Sometime's my heart would sink and I would suddenly worry. It was 4 hours...the longest I've ever been away from her... and I have a newfound respect for what Jason does everyday. But I had a really good time and I know that it was really good for my psyche.
Thanks girls!

Update

Sophia is still having a rough time with throwing up :-( she's able to process food again which is great, she still does a significant amount of throwing up though.   :-( we are working to try to find the reason. Her pediatrician believes it's either neurological or it's something called gastroparesis. Hopefully by next week we'll know so we can help her. For now a new medication seems to be helping but still not eliminating the vomiting :-(

My girls :-)

"Smile Sophie!"

https://www.youtube.com/watch?v=yhlFj7N-nw4

or type "smile sophia jane-marie hayes" into youtube :-)

This is what I was talking about yesterday, half way through the video I smile at her and tell her to smile and she does!!!

Doing better :-)/Smiling in response to my smile :-) :-) :-)

Thank you. For I know some of you prayed for her last night :-) I got on the phone with the pediatrician and Jason ran out for a new medication to help her empty her stomach. She also received a blessing from Jason and her two oldest brothers :-) she was able to process food all night although I watered it down with Pedialyte to be extra soft on her tummy. Today we are going back to her goat milk recipe :-)

As you can see she feels much better this morning... :-) The most amazing thing about these pictures...is that she is smiling in response to me smiling at her! :-) When she first started smiling it was in response to us tickling her or kissing her. But now she smiles in response to what she sees! :-) she even plays peek-a-boo! :-) In addition, this week she has begun babbling just a little bit :-) I don't know what to think, but it's all an amazing Miracle :-)

Prayers for her reflux

If everyone could say a little prayer for Sophie's reflux :-( it's just gotten way worse over the last few days and now it's to the point that she can't even eat. We are trying a new medication tonight. Hoping and praying it can find her some relief.

Sophie's Wall-Updated

Sophie's wall is growing with new pictures from cousins and aunts and friends! :-) We get asked all the time if people can do things for us. Sometimes I'm not sure what to say. We ARE going through something really hard.............but there's not much anyone can really do right now. If you or your kids find yourself wanting to do something for Sophie but aren't sure what, you can always send her a picture :-) I believe she knows ALL about her wall :-)

End of Summer Week

This week was a lot of fun! We took the summer out with a bang! Went to our favorite River spot, camped in the backyard, had an adventure day, went to the movies, and today we topped it off by going to Navajo Lake again! We've got all our wiggles out and are ready for school to start on Monday :-)

GrateFULLness

All day today I keep having a feeling of gratitude wash over me. I feel lucky. I'm grateful for this experience. My heart is full of love for Sophia, EXACTLY the way she is. I feel like I wouldn't change it if I could. But how can that be? How can I be grateful for this? I don't know really. I don't know how to explain it. The feeling doesn't make any sense. But it's still there.

Random cute pics...

Adventure Day!

I've been dying to get out of the house for some time now and Sophia finally seemed healthy enough for us to try! We took our time on a 3 hour loop stopping along the way and discovering new places :-)

Let me take you through our day...

Woke in a tent in the backyard ;-)
Heading out... (that cool thing Sophie is in is called a "bedseat")...

First stop...McD's...

Next a pit stop at the cemetary...

(see her sucking her fists?!)

Found a train near Old Irontown...

(there she goes with the fists again!)

Old Irontown Ruins...

Stopped by a childhood home of mine in Veyo...

And finished the day at fiesta fun with Dad!