G-tube Update

I am sorry I haven't posted more pictures. I promise they will come this week it's just been kind of nuts around here (as per the usual). She is doing great with her gt feedings. She's a happy little toddler.

The big girls are in vacation bible school this week.

Thanks to our fundraisers we were able to get Delaney a special stroller that helps support her better.

We are trying to return the kindness by donating left over baked goods to a friend's fundraiser during VBS and making dinner for another friend and writing out thank you notes. We appreciate everyone...everyone...

Oh and I"ve gotten all the girls lesson plans written out from August to Thanksgiving. :) It looks like it's going to be a super fun filled learning school year!

G Tube Surgery (Post-Op Shots)

Yesterday we checked into the hospital and had to wait hours before her surgery could begin. They took her back to the OR and we waited. Waiting was the theme of the day. About 30-45 minutes after they took our darling girl to the OR I was paged to a room to receive a call. The call was from an OR nurse letting me know things did not go as planned and that instead of doing it all laproscopically they had to open up her belly. Talk about scaring the crap out of a parent. She couldn't offer any more than that simply and terrifying message. Then we waited. Again. Finally 30 minutes later the doctor came down to speak to us. He explained that the reason he had to open her belly up was because he could not correctly visualize the tube placement once they began blowing up the balloon meant to hold the tube in place. He said he'd never had change up the procedure due to that reason before but he felt more safe just opening her up and inserting a bard button (way more traumatic and painful to change out) temporarily. We were thankful he took the safest route for our baby girl but were still just aching to see her and hold her and KNOW she was okay. An hour later we were paged to be reunited with Delaney. She was sleeping and her discomfort seemed to be very well controlled on pain medication. We waited in an observation room for two hours and then were moved to the floor.

The night was horrible. She was in so much pain and she was letting us know. She cried and screamed and whimpered. She desated and went apeanic and her resps went down to 10 more than once. She was definitely struggling. Finally around 5am they were able to get ahead of her pain and she's been sleeping for 2.5 hours. Bless that child.

G Tube Surgery (Pre-Op Shots)

Her surgery was scheduled for 11-1130. I breastfed her at 630 (which I was told was prefectly acceptable). When we checked in they said that after 12 months breastmilk is considered a solid and not a "clear" so surgery would have to wait until at least 1230. It was a LONG morning of waiting.

G Tube Surgery (Before Belly Shots)

Call us crazy just Jess and I sat around and rubbed on her tummy and took pictures of it and kissed it because it will never again be that perfect untouched baby tummy. We mourned her old tummy in a way...her skin that had no scars.

Pre-Op Appointment

During the surgery consult they showed us what the Mic-Key button would look like and how it would be put in. They also let Delaney play with a baby Mic-Key button doll. This appointment went really well. We even talked about Delaney's need for oxygen in the car and at night.






The upper gi was completely traumatic. They strapped her to a board. Turned her on her side and tried to get her to drink barium from a bottle. She wouldn't take the bottle because she was livid. They proceeded to take a syringe and squirt it in her mouth. Not only was it nectar thick and room temperate (and we told them five times she required chilled syrup) but they were squirting so much in at a time that she was starting to gurgle and choke. Poor poor baby...






The anes. appointment was very frustrating and annoying. The end result however was the papers were signed, risks were assessed, and we got the tentative go ahead for surgery on Thursday.

We love our friends

M, P, and T (and soon to be H) watched Charlotte and Julia while we were at the hospital with Delaney. We are so thankful to have friends that can step in and watch the big girls or bring us food to the hospital or bring us dinner at home or stalking the blog to find out what's going on. M took all the girls to chuck e cheese, they watched a movie and colored, they enjoyed ice cream and dress up. I'm pretty sure they had a great time!

Jess

Jess turned another year older this weekend...here are a few of the reasons I'm really glad she was born so she could be in my life.

1. I love her dearly

2. She's a great mom

3. She literally saves lives on a daily basis...the smallest of lives

4. She makes some really good enchiladas

5. She is hilarious and understand why I don't always get humor

6. She is patient and kind and allows for my quirks

7. She loves to travel

8. She isn't afraid to be part of the good, bad, and ugly of life

9. She loves music

10. She has a beautiful singing voice

11. She's been pregnant, given birth, and breastfed before...so she gets it

12. She's older than me :)

13. She feels the calling to dance in our living room, at the table, in the car, through the kitchen, and even in the yard sometimes...

14. She's absolutely perfect for me

15. Even if she doesn't want to...she listens...and listens well

16. She makes some darn good french toast

17. She exposes me to "culture" through plays, indie movies, and "weird" music

18. She cares about my best friend and her daughter as much as I do

19. She constantly emails/texts/calls to find out every detail of the day/appointment/event if she's at work and has to miss it

20. She cries...in front of me

21. She likes to take naps

22. She's super serious and hard nosed when it counts

23. She makes a really good version of lasagna

24. She enjoys my cooking

25. She loves diet coke

26. She giggles when I kiss her

27. We have inside jokes that come from countless hours of hysterically laughing

28. She devotes her entire self to others... some times to a fault

29. She is passionate about acceptance

30. She raises our kids with passion, appreciation, acceptance, and love.

31. She likes a lot of the same shows on tv that I like

32. She has taught our one year old to pucker up for chapstick

33. She loves me just the way I need to be loved...

34. She just rocks!

Readers and Lurkers

Okay it's that time when I find out who is reading...all you have to respond with is "me" but I'd like to know how many people are reading my blog and how many of you I "know". I post some really sensitive information on here and would like to know who all is out there...

Sooooo come out come out where ever you are!

Afternoon the Gma and Papa

Talking to Grandma



Stealing Papa's chair


Papa trying to get his seat back




Sharing the seat



D sitting in the rocking chair Jess got on her 2nd birthday

Swallow Study

Didn't turn out well....

More life changing news...

But we are a strong family...she is a strong girl. We will get through.

Occupational Therapy

I shared her food journal. She's not concerned about her output as much as the nurtition going in. She is referring us to a Nutritionist. We will see them in 2 weeks.

She is concerned that on "good days" she still isn't getting enough calories. And on "bad days" she's getting next to no calories. She suggested that we try Pediasure just to get nutrition in. She thinks that we are in a vicious cycle of oxigenation, nutrition, mobility.

She brought up that she didn't think an NG would be a very good option for Delaney because she would constantly rip it out so instead of fighting her to eat we'd be fighting her to eat and fighting her to keep the tube in. She said that she thinks a GT would allow us all to have a more "normal" life. She thinks it would be temporary because we could reteach her stomach what "full" feels like while feeding her by mouth so she starts to get the connection of what she should feel like after eating. She thinks by reteaching her body the correct signals it will help her brain do it correctly by itself without the tube.

It's a lot to digest because even just a few weeks ago I was in tears at the mere mention of a tube being placed in my daughter. Now I just want us all to have a more normal life. Our life right now is focused on how to keep Delaney in her little bubble (our living room) so that she's more likely to eat and drink and stay healthy. I want to be able to go other places without fear that she's not going to eat, drink, or she's going to catch something that lands us back in the hospital.

Thank you!!!

I want to personally thank all of you who have helped with this fundraising effort!!! You have all been amazingly supportive and wonderful and I can't thank you enough. Stage one (the website) was a HUGE success (over $1200!) but it is over and now we're moving on to stage two -the yard/bake sale. The sale starts next week so we're full speed ahead getting ready for the sale. We are still looking for donations to sell, offers to help and make baked goods to sell. We will need help on Friday, Saturday and Sunday working the sale as well as setting up and putting away in the afternoon. We also need help Thurs evening getting everything ready for Friday morning. Every little bit helps! Please respond here if you can help at all.

There's also a stage three to this fundraising effort. We will keep the DONATE paypal button at the top of this blog so that if you wanted to make a monetary donation at any time you can. If (more realistically WHEN) another big push does come up for something specific we need I'm sure we'll have another online fundraiser like we did this time.

We feel so blessed to have so many people in our life that love and care for us and our daughter. We never knew how much people we had behind us! :)

New Best Friend

Delaney got a package in today...It was from a really awesome friend we've never met...they had shirts for us and another family and this "ugly doll". Delaney insisted on napping with the doll and then taking the doll to the grocery store. Thanks T, K, L, and soon to be S.

Paypal and Fundraiser

We are keeping the paypal up on our blog for anyone that feels compelled to help throughout the year.

Our fundraiser was a HUGE success. Thanks to ALL of you!!! Thank you. We got her a new carseat that supports her little body a lot better. We are also going to get her a pulse ox, portable nebulizer, her prescriptions that have been sitting at the pharmacy that we can't afford to pick up, and a few more cups that she can drink syrup thick liquids out of. Thanks to all of you we can finally do these things.

One day left

Our fundraiser for Delaney ends tomorrow....

Pedi follow up from hospital

They checked her pulse ox. It was 92.
They gave her a new asthma action plan.
We were told she was certain that by 3(used to be 2) she will grow out of all of her issues.

Bake Sale Needs

Here is what we need for the bake sale that we are having in conjunction with the garage sale...

1. Lemonade mix
2. Diet Coke
3. Water
4. Sprite
5. Cookies (all kinds EXCEPT ones with peanut product Delaney is highly allergic)
6. Brownies
7. Muffins
8. Baking goods supplies so we can bake them ourselves
9. Sandwich bags
10. Plastic Wrap
11. Posterboard (bright colors)
12. Places to put our flyers to advertise the benefit!

If you can help out please email me at kathybailey@gmail.com or find me on facebook. We need all unprepared supplies by Monday June 21st and all cooked supplies by Thursday June 24th.

Thanks again for ALL the help everyone!!!

Don't you have insurance?!

My wife wrote this note on facebook and I thought I'd share it here on the blog. My wife is truly amazing. I sometimes take for granted how amazing she is. She works so hard for us (it wouldn't work for me to also work because Delaney can't be in a normal daycare and she's so sick and has so many appointments I'd constant miss work anyway). She puts up with so much stress. She pretty easily makes ends meet without medical stuff...she is such a success in my eyes. She even makes it work with medical stuff...and for the most part hides the stress of that task. All I can say is she is amazing...and I am SO blessed that she's MY wife! :)

Jess' note

Okay so I haven't actually had anyone question why we're in the financial situation we're in regarding Delaney but I know some people are thinking it so I thought I'd explain what I've learned so far about our lovely health care system and how well "good" health insurance works.

DEDUCTIBLE
I have to carry the family plan (duh) and I have to have the premium one in order to have them cover 90% of most stuff so my deductible is $2400. That means I have to pay out of my pocket $2400 for every single thing until I hit that magic number. Once I hit $2400 they cover 90% of most things. I'm always very relieved when this happens! *usually around 2 months after the plan year starts in July*

OUT OF POCKET MAX
For the plan I carry there's an out of pocket maximum. So after hitting $2400 I only pay 10% out of pocket until I hit the magic number of $4000. Yeah so I ALWAYS pay $4000 out of pocket. Every single year. Usually before Thanksgiving. OUCH!

Once I hit my out of pocket maximum my out of pocket expenses don't just magically end. That's because that's just for the medical. I'm still paying co-insurance on all the meds and dental and vision (FYI when babies wear glasses they need a new pair more than once a year because they GROW!). ON TOP of the $4000 I've had to shell out from July - Nov.

It also doesn't take in to account all the stuff that insurance doesn't touch but are still necessary. D can't be in the $70 Walmart carseat because it doesn't provide enough support for her floppy little self. She needs the big mama jama that costs about $100 more than that. She also wears braces on her legs so that means that she needs special socks (they do not make knee socks for kids that have legs this short!) and then special shoes to go over the braces (size 5 EXTRA WIDE?). Every single little thing for this kiddo has to be "special." Special apparently means really expensive. She also can't ride in a stoller because they don't provide enough support. They make ones that provide extra support but they're normally $300-400 so we don't exactly have one. We're just glad she's still little enough to be carried.

So how does one income pay for all this? Not very well apparently. My base pay with my normal three 12 hour shifts a week is plenty to pay for the bills I have but when you add $5-7k a year to it, things get a little tight. So in order to off set this I've been working four 12 hour shifts a week most weeks in order to keep us out of bankruptcy. It wears on ya after a while. I miss my kids. I miss my wife. I wish I could help more at home. It's hard.

Sooooo there's my explanation of why this fundraiser came to be. I know no one asked but I'm the type of fiercely independent person that felt the need to explain myself. I do not enjoy asking for help. It makes my skin crawl. It makes me feel like crap. But I have to. I'm doing my very best and it's still not been good enough. My wish is that Delaney's medical expenses will eventually slow down and things will change for the better. Until then I have to ask for help.

And you've delivered! Kathy and I have been so overwhelmed by the outpouring of support for us and our family. We feel so blessed to have all of you in our life. Our hearts are so full and it's so nice to know that we had this huge village of people supporting us that we didn't even know were there. I guess that's what you find when you do finally ask for help. :)

Best Friends

As we started our journey to having children Jess and I dreamed of finding other gay families with children. We wanted the support for us...to walk the path of an alternative family. We did this through fertility friend and blogs. We connected with friends through the internet. That community has come in VERY handy through our time of trying to get pregnant, having a miscarriage, losing our twin, the birth of delaney, her first hospital stay, and every single problem and triumph since then. These women have offered prayers, services, food, money, love, and even some tshirts :) The embrace that we feel from this group of lesbian moms and moms-to-be is unreal.

We have a few friends in person too and our friends are the first to contact us with prayers with we are struggling and cheer for us when we are celebrating. They have attended our baby shower, birthday parties, house warming parties, soccer games, play dates, and dinners. These people (and you know who you are) are so vital in our emotional health.

Family sends love and support always. They send care packages, make uplifting phone calls, entertain the big girls while D is at appointments or in the hospital, help with food and gas for far off appointments, and they love our kid.


And then...then there is this little girl...we'll call her P. And her mom..we'll call her K. This little girl is probably the BIGGEST support we have found in everything to do with Delaney. From milestones to specialists to hospitals to phone calls and skyping. She will be 4 in August. She is simply amazing. She is MY daughter 2.5 years from now. She and Delaney literally share every single symptoms, bad day, struggle, triumph, smile, blonde hair, hilarious personality, loving nature, and inner fight. I have never felt more of a need for one of our children to find a friend than I have with Delaney. I want her to know that her being different makes her special and not weird. I want her to know she isn't alone. I want her to know someone that TRULY understands how she feels. For Jess and I, I think it's been a life changing experience to have another parent set that is going through fighting all the same battles. We can help one another, talk to one another, laugh and cry with one another. I read books to P on skype almost every day (except when one kid or the other is at an appointment or in the hospital) and she reads books to me. We have dance parties with D and P listening to music and moving around. We have late night chats when P is feeling sick or sad or when D is up late wheezing or with fever. We talk about how P feels different but it's okay because D is too. We have talked about being a princess and P even gives advice on how to help Delaney ("those tubes make your nose itchy so make sure you scratch her nose sometimes"). This family and this little girl were sent to meet up with our path by God...there is no other explanation. K and P are vital to our family and we all love their whole family very much.

So thank you...our support group. Thank you for the phone calls, the prayers, the time, the thoughts, the fun playdates, the skyping, and the donations. Seeing how many people love our little girl like we do is so beyond moving. You will honestly never know what you mean to our family...

Home

They discharged us. No plan, no monitoring, no interventions. Same asthma action plan that has not worked in the past which they re did three different times because they kept getting confused on the respiratory therapists instructions and the stupid doctors instructions. We are stuck now buying her sleep monitoring equipment out of pocket because these stupid doctors don't want to handle it and they are passing it to our pedi who wants a specialist to handle it and when you ask the specialists they want the pedi to handle it. All the while here we are standing and waiting.

Delaney's Fundraising Page

We have had so many blessed angels amongst us here on earth...giving prayers and donations. A few family/friends asked me to repost the link. Since the hospital server is not letting me access facebook right now I thought I would post it on here. We ask you pray, donate, or pass it along. Thanks for ALL of your support. It helps us in times like these where we are scared and tired and needing some uplifting.

www.giveforward.org/delaneylower

You can also donate to paypal on the side of our blog. Paypal can even do money exchanges from foreign currency to US Dollars. In case anyone needs that feature lol.

Once again THANK YOU for all of your prayers. They are getting to us!!

Still in the hospital (day 2 posted on day 3)

Since my last update Delaney still requires oxygen while sleeping. She is desating and her heart rate is dropping into the 30s while sleeping as well. She is doing pretty well during the day. We had a visit from the hospital chaplain yesterday. She prayed with us and brought a hand knitted shawl for Delaney. We have also had a visit from Grandma Belinda each night and Grandpa Mike came yesterday with the big girls. Tomorrow Jessica goes back to work. The girls will be here with me in the hospital. We have a new very detailed asthma action plan. We are awaiting PT/OT/Rehab to come up with a better sleeping solution.

Er Baby

Sleeping angel

Bath in a bucket

Ready for bed

Once again with the oxygen

Delaney gets hospitalized

To make a LONG story very short...Friday she started coughing. Saturday started the fever. Sunday her cough/wheeze/rattling got worse and the fever remained high. Sunday night we took her to the ER. One breathing treatment, chest xray, and lab draw later we were sent home. Monday morning we went to the Pediatrician. Her pulse ox was 87 and he sent us home. After long dicussions with Jess and my best friend I decided to just take her to the ER. From the ER we were almost immediately admitted to the hospital. She was put on oxygen and given a few breathing treatments. Even with all of that it was tough to get her pulse ox above 95. So here we are in room 5711....waiting to find out what happens...

New Carseat

This is the old carseat


This is the new carseat


Thanks to generous donations we can finally afford to get Delaney a new carseat. She has hypotonia which means her muscles are weak. She also has a connective tissue disorder which makes her joints really lax. These two combined present a huge problem when dealing with seating (carseat, high chair, etc). When her Gramme bought her first one we were really unaware of her issues and just bought a pretty good very cute seat. Over time we've been advised that prolonged sitting in that slouch/leaning position can cause issues with her spine. We have heard great things about the Graco My Ride 65 from other parents with special needs kids so that's what we got. We will sell her old carseat at our benefit garage sale at the end of the month.

Delaney's Mid Sleep Breathing Treatment

Last night Delaney was wheezing and coughing before bed and fell asleep before we could give her a breathing treatment so we took Aunt Kate's advice and gave her a treatment after she fell asleep.

Occupational Therapy

Today we practiced in her OPM(swallow study) chair again. She did great!

Then we played with toys and the swing. We talked about Delaney leaning in her carseat. She was not very helpful at all with that topic. We also talked about her seating positions in her stroller. She once again was not helpful with this situation. Then we talked about what might happen after the OPM. This is when I completely lost it and started crying. She explained the potential of NG tube placement after the OPM. She also explained the process to get a g tube. And then the most devastating part was that she explained they may ask me to discontinue breast feeding immediately following the test in two weeks. After talking to Jess I am not sure how I feel about that particular statement.

Just thought I would keep everyone updated on some of her stuff.

Generosity

The Generosity of people came to an all time high yesterday when two wonderful people donated to Delaney's Angel Page. Lydina is a woman we met through our journey of trying to get pregnant with Delaney. Her son was born with a heart defect and a lot of people gathered around them with prayers and food and support. We are so grateful for her prayers, love, and support. We also had an anonymous donor yesterday. HOLY COW is all I can say. I wish I knew who it was so I can hug them very very tightly but since I don't I will just post a blog saying THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU.

Delaney gets her walker

Delaney got her walker yesterday. She has been using one in therapy on and off for several months so it is nice to finally have one of her own. She took to it right away. We went to Target and she did not walk away from it at all. We noticed that while using the walker she slows down enough to actually notice her true gait pattern. Talk about WOW! When not in her walker she tries to walk super fast to stay balanced and moving. We took a picture and a couple short videos of her first official day with her walker.

Leawood Park