11/23 Thankful for my photogenic baby!

Had a thankful photo shoot today, because we are oh so thankful for the amazing, incredible, beyond brilliant surgeons, doctors, nurses, RT's, social workers, all the specialists that I'm realizing is a long list of awesome people.... ALL the folks with big and small roles in helping this fierce little baby girl have the best start possible to her unquestionably valuable life. 
Kevin and I are trying to have a restful and thankful weekend, since we have been running pretty hard.  We are down to no nursing at home, but hopefully we will find the right for soon! 😬, so we need to bulk up our sleep reserves!  We were just reminiscing on the couple month blip in time that we spent out in Omaha, and just what a blessing it was to be able to be there in their NICU... and also what a blessing it was to be able to leave before the snow showed up! 🥶☃️
Something else to be thankful for is the new friends and mentors we have found because we are now connected to other parents by our experiences of having a child with Trisomy 18(or 13!)  I had been following the life adventures of a toddler named Lillian, since her mom's post about her wonderful daughter was one of the first positive pieces of info about T18 that I found online, after reading a bunch of disheartening info.  Lillian's mom also has a shop online and makes the cutest clothes, like this pumpkin spice outfit that Annelise is wearing!  She named a line of new burp cloths after Annelise in her store with a little note telling people about our girl🥰 https://lily-roseboutique.com/products/annelise-modern-navy
We have a lot to be grateful for, and we are doing our best to live like we know it! 
I also have to recognize where our blessings come from.  God has held us, provided for us in every way imaginable and in some ways we couldn't even have imagined.  My favorite bonus from having Annelise is the new level of relationship that I have with our creator because of her existence. 
I've heard that when things get tough, is when you really find out who your friends are.  Can I just say how good, great, amazing it feels to have had nothing but support from our friends, and their kids even?  My heart is held together sometimes with the support of our family and friends.❤
Now... that takes care of the things that make our little family's bubble amazing... the thing I am needing to work on most is being able to share my blessing with other people.  I have little to no actual desire to have nursing staff in our home.  Guys, finding a nurse is exactly like dating.  Have I said that before?  It keeps being more true.... and I did not enjoy dating!  Did you know me in that season of life?  Remember?  I like knowing people and already having the relationship.... finding a nurse that fits is hard and can be emotionally draining.  I find myself building more character through this process... but I don't really want any more character! 😆

The prayer requests for us are:
Annelise's tummy issues that continue to bother her.  Air bubbles need to chill out!  She really struggles to do crunches in order to get them out :( I was able to write this long post because she fiiiiiinally went to sleep for more that 20 minutes since 2am, and she is laying on me....so there's no way I'm moving!!
I am doing well on the soy free and dairy free diet, but could use some prayer in letting go of some control over Annelise's care.  I don't think I need to give the control to a nurse as much as I just need to give it to God.
Kevin could use some God given energy to make it through a work day and also nights at home with no nursing.
Continued thankfulness that no cold bugs have come into the house, and asking the Lord to keep the germs out for as long as possible while she grows bigger.

I hope you all are looking forward to quality time with family or friends this week.  We are going to stay home from the actual feasting.... to avoid taking Annelise out, but we hope to connect with family when not surrounded by food I can't eat 😝😆

Thankful for you, who pray for us and keep up with Annelise updates!❤❤❤

23 weeks old! 11/18

An Annelise update!
I'm finding less time to write my thoughts down, but I'm so forgetful and sleep deprived, that I think it's important to do, so I can look back someday and stir my memories up.  These facebook/blog posts have served me well for processing feelings and organizing thoughts, as well as being so encouraged by the comments in response to Annelise updates.  Thank you for walking through this with us! We are staying away from non medical outings, and it stinks to be back in town, but not able to go hang out with my friends and their kids.  I love their kids, and I truly miss them!  But kid germs are serious nowadays... I know Annelise will catch something at some point... but while she is so little still, the goal is to stay clear of congestion for as loooooong as possible!
Here are some updates!

Allergies:  Now that Tiffany the cat is living her best life in Arizona with Jen, Annelise has had a big decrease in snot from her nose!  I do think it helped to rehome our sweet kitty.  I need to move the box on the floor in the hallway though, because out of the corner of my eye I always think it's the cat, and we miss her!
New allergies to cow milk protein and soy have shown up in the form of lots of tummy gas and diaper problems.  I will take any perks that I can get from all of these medical devices... one perk is being able to hook up her feeding tube to "vent" her tummy, and let out the air bubbles!
She has had soooo many air bubbles bothering her though, that it was hard to get food into her, because so much was coming out of her through the tube that is meant to feed her!  That's when we switched to soy formula... which seemed to make it a little worse... so now we are dairy and soy free... and seeing some improvement already!  It has been a long weekend.  Our night nurse called out on Thursday, so Kevin and I took turns napping and trying to comfort the gassy baby overnight 3 nights in a row.  We were very thankful to see the nurse last night!

Home Nursing:
We have a possible daytime nurse!  She came to meet us this morning, and seems nice and says she has experience with pediatric patients with trachs.  Time will tell if she's a good fit to care for Annelise.  She will start her first shift tomorrow, 7am-3pm.

Services:
My head is swimming with people to call back, services to advocate for, and forms to fill out for this babe!  I have had some good role models while watching the moms of my kiddos with autism be the squeaky wheel that gets the services after a lot of work on their part.  Not my strongest suit... but if I must change my personality and become a list maker in order to get stuff done and not lose my mind... well, hello check boxes and calendar that I actually write on! The things we do for our kids!

I have a kid!  This is actually a very gradual thing that is sinking in😆 How many times have I started writing my mom's info on the doctors office forms when it asks for "mother's name".... it's ME, not Grandma!

Overall, when there are no tummy pains, our girl is a happy sweet little love bug!  We have been working on tummy time when she feels up to it... it's so awkward right now with the trach and her lack of muscle tone, but little by little we will get there!

Pictures!

11/10 Happy 5 months!

5 months today!  Annelise Faith, your dad and I fall more in love with you every day, just because you're ours. 
I remember reading another mom's blog who had a baby with Trisomy 18 when I was pregnant with Annelise.  She said that she was grateful for the journey, and that she wouldn't change it, because of the way it changed her relationship with God.  I remember thinking that I would likely never be emotionally/mentally in that place.  But I prayed that I would be someday.  I'm so thankful that asking to be closer to the Lord is a prayer that God will always answer with a yes.  Looking at Annelise today, if I had the opportunity to fix all her medical issues, I would for sure vote for that!  But I don't look back on our intense journey and wish it didn't happen.  I am so grateful for the opportunity to be in a place where I had nothing to do but run full speed at my savior and test what I knew in theory about the power in His love.  He caught me, He held me, and is holding Kevin and I during this new season of no sleep and new normal of having a medically fragile child heading into flu season.  We feel His love in a way that we wouldn't be able to without the struggle that pushed us to His feet.
I love celebrating the successes big or small in the nationwide trisomy community that I belong to by being part of groups and following kids' pages on facebook.  Our community celebrates with each other, but today is grieving with the parents of Beckett Hope, who went to be with Jesus yesterday after some stellar 33 months of life. She caught a cold that ended up being too much for her body.
I think about all of the amazing memories that family is left with because of Beckett.  There's a super sweet video of her dancing in the kitchen with her Daddy.  Her mom posted a picture of her way back when she was 5 months old, same age as Annelise now... and she had a onesie that said "my favorite color is glitter".  I think we would have been friends.❤
It was so sudden, and the loss of our beloved friends so young, like our Omaha sister Selah Grace, is a bitter part of this world of parenting babes born with trisomies.  It hurts.
I don't know how many days Annelise has with us.  I don't know why she couldn't just have been born with the typical two of each chromosomes so we could enjoy a less intense infant stage.   But I know she is here today, and that this is the time that we get to cherish and treasure her, love and cuddle her.  I know God is using her life, and it's so amazing and humbling to see His hand in our family daily.  Each crazy making day of this new life is one that we fought hard for.  The stress and business is real, but the joy and gratefulness of getting to experience this stress because we are home living in our house with Annelise, that's real too and fills my whole heart with feelings that are leaking out of my eyeballs as I write this.
When I tell Annelise how important she is, and how much worth she has... I keep getting the thought that Jesus feels the same way about me too!  If she has value just because she's a person created by God...well, so am I, and so are you!  That's pretty great stuff🥰
I have been able to write this long post because Kevin has been taking care of Annelise.  I'll go help him out now!  Goodnight!

11/8 - a week of appointments complete!

My brain is a bit mushy from the week of doctors appointments.  Leaving our safe space daily, doing new things and meeting with new specialists, while not sleeping much and trying to figure out how to stick to the glimpse of a schedule that we have while being out for large chunks of the day... has left me a little empty. I know it will get better and easier with time.  I feel like I'm doing a pretty good job letting myself be okay with this phase, even though I'm not anywhere near where I want to be as far ask skills and organization level.  I am practicing, and each trip has gone a little more smoothly than the one before.  We have had a lot of incredible help with prepared meals, texts and calls to check in, and rides to important appointments.💖 I don't know what we'd do without our church family, family family, and friend family🥰😁
Monday we met with the pulmonologist. Kevin took the morning off so we could go together.
Tuesday our friend Patsy was so kind to drive us to Annelise's kidney ultrasound and urology appt.
Wednesday we hung out with our dear friend Jeanie who gave up her afternoon to drive us to the ENT.
Thursday our sweet overnight nurse extended her shift to go with us to the GI doctor.
Friday the same nurse came with us to the cardiologist.
I definitely don't have enough in me to explain details, but Annelise is doing well, and the plans are for some type of hearing aide/device in the future, keeping an eye on....pretty much everything for her! And possibly switching to dairy free, and if that doesn't help her tummy...dairy free and soy free diet.  That would be for me too since I'm still pumping. 
Praying for her poop!  I guess that's parenting in real life, right?
Happy weekend to all!

November 2. Daylight savings time just made this long night longer!

It is taking some time to learn Annelise at home...and in her true fashion, she seems to continue to change things up every week!
Yesterday she started having problems with her tummy, and extra air was constantly building up and making her really uncomfortable.  She doesn't often cry, but she was visibly in pain 😔. A cool thing about having a g-tube is that you can vent the tube, which releases air that gets trapped inside, and it's like burping for them.  We learned in both hospitals how to vent her tube, but there was never any air that needed to escape before.... But yesterday, there was a ton.
Let me tell you that nursing, and getting nurses has been a challenge, but we have a wonderful night nurse, who volunteered to work an extra half shift to help out while Kevin is in AZ. She ended up staying for a full shift last night because Annelise was having such a hard time getting nutrition. There were spit ups and so many air bubbles coming out, that it made it hard to put food in! She let me sleep for a few hours and I would not be in my right mind right now without her. She's the one who finally got Annelise to sleep!
Please pray for Annelise to have healing in her tummy.  I can't do much for her.  We trust that this is a marathon that the Lord will give us endurance for... but I just want an easy day for my baby, so I'm asking for that! Also asking for my parents' safe travel home today, after a long night last night.  It was so good to see them, and as I am certain the way they show their love is through acts of service, out house is so much cleaner now, and the back door is fixed!! 😍
Last night was a flash back to feelings from the NICU days, where I was reminded that our medical needs are complex, and since tomorrow isn't promised to be easy, I need to be all in the current moment.  I suppose that's true even if our medical needs aren't complex!  I was listening to some songs that I played for Annelise in the NICU, and just feeling helpless to help her, but also in awe of the strength of this little girl to overcome all she has.
These lyrics hit me hard last night, broke me, but also mended me.

"You are mine for a moment
But you are His
Forever His
And in this life
I am holding You
But in His arms you live

I couldn't love you more
No, I couldn't love you more
No, I couldn't love you more
Oh, but somebody does
Jesus"

I can't wait for my husband to get home today!  And to see what the day brings.  Happy Sunday friends, we are so grateful for your love, prayers, food, help, and more help that you pile upon us and our girl.

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November 2

God has provided just what we need, in salvation first, the way He steps into our lives in seen and unseen ways, and then in the way His people care for us too! We found a new home for Tiffany the cat.  I'm so sad to see her go, but so happy and grateful that our friend Jen Pierce offered to take her.  Tiffany lived with her for a few months once before when she was a much younger kitty!  I loved getting updates on how she was doing back then, and she was so well taken care of.  I'm sure she'll remember her, and enjoy new cat adventures in Arizona!  I already miss her, but know that this was the only decision to make to move the allergens away from Annelise.
The timing is perfect for Kevin to take a drive out there this weekend, because my parents are on their way down to visit for the weekend.
We will miss Kevin, but are excited for him to get to see our friends for a night, and then see him tomorrow❤️
Annelise is doing well at home, with a few tummy troubles lately.  Her goobers haven't gotten worse, thank you Jesus! Praying for those muscles to get tone in them all around her baby body!  The baby body is growing, she's nearly 10 lbs now! 😍😁🥳
Have a great weekend!

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