12/30/19 - A very full birthday for mom

It has been a busy couple of days.  My parents came to visit, and my body decided that if I wasn't going to sleep on my own, it would just turn narcoleptic whenever I sat down.  😴
So I caught up on some sleep, and got to say hi to my aunt Claudia and uncle Tom... but then slept right through their visit... I heard our nurse really liked talking to them! I missed it all😆
Last night, I repositioned Annelise in her bed, and the site where her drainage tube comes out started bleeding!  I called Kevin to come back to the hospital.  They ended up changing the dressing and it looked like nothing more major was wrong.  Kevin stayed up with her while another nap took me and I slept. 
Somewhere between last night and this morning, Kevin made me birthday cupcakes🧁I got birthday coffee delivered by our amazing friend Claire,☕ and the palliative care NP whom we love, and our new friend from the Child Life department here, who we found out goes to our church too! Brought gifts for me!
It felt like Jesus wrangled someone His peeps together in order to give me a great birthday.  I don't know the hospital people super well, but their gifts were spot on and so thoughtful❤
Annelise was bright eyed this morning, but in the afternoon, she had to get a PICC line placed, so they can take the central line out. She will still be able to get blood drawn for labs, and medications given through this line.  She had one in Omaha, but it was in her leg.  This one is in her arm, which I don't like, because she loves to bend her arms, but can't really with all the tape on her now.  After they placed the PICC, the xray showed that it was in too far, so they are moving it back now.  This procedure has not turned out best case scenario... she has to have all that new tape taken off of her skin, she had two dressing changes the night before... poor girl is being bothered regularly :(  I can't wait to hold her, hopefully tonight!  That will be a great end to a birthday for the books.
Last birthday, I didn't know if I would get to hold my baby ever... so even though we are in the hospital, I can't shake the joy I get just looking in her beautiful eyes!
We finished the evening with dairy/soy/gluten free pizza and HGTV.  I was with my favorite people, and felt loved and cared for with messages and songs from my family and friends.  Despite life circumstances being so intense these days, my soul is the happiest that it has been.  Getting super old isn't so bad 🥰

12/28 out of surgery!

She's out of surgery!  Major issue was the lack of pain meds waiting for her when we got back from having a device removed from her head and a new hole placed near her clavicle where the tube comes out to drain.  The night shift isn't used to taking kids to surgery, so this is their learning experience.  I just wish they didn't have to learn on my kid. 
So after an emotional and intense hour, meds have been administered, baby is sleeping.
The surgeon said everything was successful.  They went a little crazy with the razor and shaved half her head.  Guess I'll be investing in more bows.
Praying against any infection.  We want to get through this and take Annelise home!
Can't believe we'll be here until next year!
So grateful she's out and ready to recover❤
Hallelujah!🥳

12/28/19 - She's gone back to have the shunt removed

6 month photos

One year ago today we sat in exam room 4 and heard from our OB that our NIPT blood test resulted in a 9/10 chance of our baby being born with what's called Trisomy 18.  We were lucky enough to have a gracious doctor who recognized that she can't tell the future about what would happen to our specific baby, but let us know that she would likely have so many heart and lung issues that of babies like her, only 10% make it to their first birthday.

Thankfully, I found an online community on Facebook, filled with parents of babies with extra chromosomes like Annelise.  They are the history makers, pushing the medical professionals to treat the heart and lung problems that our kids have, in order for them to be able to have a chance at life at home with their family, to one year and beyond!

Before we came to the hospital, we had a cardiology appointment to follow up on the healing of Annelise's reconstructed heart (thank you forever, Dr. Hammel at Children's in Omaha)and we got the green light to go home and live our lives for 3 more months before the next check-up because she looks so good.

Today, her regular pulmonologist is on rotation to see kiddos this weekend, and she was so pleased with Annelise's lungs, she said this may be the clearest they've ever been, and they sound amazing!

So the two big deals are well managed right now, we just need to take care of this little neurosurgery thing 😉
Praying and asking God to bless Annelise with a successful surgery and no further infections!

We're halfway to that year! Taking time to be grateful for every day with this sweet girl❤

12/28 - one year since we found out about the extra chromosome

The OR schedule seems to be a fluid thing in the hospital no matter what state you're in.  Our morning surgery has been pushed back to... "whenever they tell us".... 
I am doing ok with the surgery... I had the expectation set for me that this would likely be part of our story at some point, but because it is due to infection, and not simply the shunt malfunctioning, we found out today that we will need to go through the whole round of antibiotics before they put a new shunt in.  Makes sense, but that adds up to more WEEKS in the hospital.  That hurts.  That covers both Kevin and my birthday and the New Year's celebration.  We have already been here for 2 full weeks.  Just yuck.
There's something bothering me that I hope will leave my brain if I write about it.  Kevin shared with me that he was talking with one of his co-workers about our sadness that 4 of the babies we were in Omaha with have passed away.  The coworkers response was "well you kinda knew that was going to happen, didn't you?" I need to stop and say how amazing the people Kevin works with have been.  Absolutely fantastic folks who obviously care about him as a person as well as an employee... and I don't think this particular co-worker meant anything hurtful by his comment... it speaks to the world view that we've been trying to shake off of her story.... the thought that all of this heartache could/should have been avoided.... and that it was up to us, we had the opportunity to keep this from happening by not letting her grow to experience the bad part of life.  The comment aluded that we shouldn't be as upset about our trials, because we chose this path.  I have let myself feel this way too, even without the mention from an outside source... so I think that's why this man's comment sticks with me.
It pokes at a part of unrest within me.  Bigger picture though, is that it sounds great in theory to have been able to avoid this hardship for Annelise, but to do that, I would have taken from her the good parts of life for herself too... mainly snuggles with Dad and her unicorn lights right now... I also would have taken the gift of knowing her from our friends and family, and ultimately would have not treated her life as the treasure that God says she is.  Her worth has been given to her by the Lord creating her in the first place, no matter how long or short her life on earth ends up being.
Finding words for my feelings has helped, and as I write this, her nurses and RT's have been doting on her, and marveling at her cuteness.  We haven't been nudged, as some of our friends are, by any medical professionals to reconsider the interventions we desire for her medical care.  I feel very fortunate, despite not having a place for early heart repair, that we have come back to this hospital where she is valued as a whole person in the PICU.❤
We are stiiiiiill waiting for our time slot to be confirmed for the OR.  I'm considering doing her 6 month photo shoot now while she's easy to move around....yup, that will make for a good time passing activity.  Stay tuned for photos!

12/27 Surgery tomorrow

Well, it isn't great news.  The cerebrospinal fluid that the neurosurgeon collected this afternoon came back from the lab positive for bacteria.  They don't know exactly what kind of bacteria it is.  That will take more time for the lab to find out, but the treatment is the same no matter what kind it is... take the shunt out.  She needs the shunt though to keep from having too much CSF, so they will "externalize the shunt" tomorrow.  Basically, a tube will run from the ventricles in her brain, outside of her body to a little bag.  She will stay in the hospital like this until the infection is gone, and then they will put a new shunt in.
Our amazing neurosurgeons in Omaha prepared us for "when" and not "if" her shunt failed and we would have to get a new one... we thought we were out of the woods for infection though...we had escaped infection for so long, it's kinda weird to be getting one now.  But that's where we are.  We are so grateful that if this had to happen, it happened in the hospital.  The timing was such that she was able to have pretty much immediate attention placed on that fever.  So happy our team here discovered the source of the infection, so we can get it taken care of.
Now comes the part where we have to watch Annelise go through another surgery.  On paper, there's the plan of care...it's simple, take shunt out, get rid of infection, put new shunt in...in real life... it adds up to hours and hours of recovery, not being able to hold and cuddle with her, seeing her in pain while her body heals, not seeing the sweet expressions she gives when she's feeling good.
Kevin and I got to hold Annelise for a long time today.  I just tried to memorize the moment while she's feeling good, making eye contact, and loving her life.  Those are the moments that we work so hard for.

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12/27 - another weekend in the hospital for us

Little Annelise update:

She now has had blood and cerebrospinal fluid drawn to test for infection.

In her agitation this week, Annelise has been rubbing the back of her head against the bed by turning her head left to right back and forth over and over.  The neurosurgeon said that's enough to aggravate the shunt and cause the swelling.  That fever and elevated white blood count though still needs to be figured out, so he drew some fluid out of the area around the shunt with a needle.  Surprisingly, our girl went right back to sleep after it was done!  Hooray!

She continues to be much happier than she was yesterday.  We will be inpatient until Sunday at least while we wait for results of the tests.  Monday is my birthday, so I think you can guess what I'll be wishing for when I blow the candles out on my dairy/soy/gluten free cupcake!

12/26 - hopefully last night in the PICU?

We are supposed to go home tomorrow!  Except Annelise has spiked a fever tonight!😭  

They are running all the tests, I'm using my tools to stay present with my little one while she feels crummy and not race off to worst case scenario land.  It's a struggle.  We let Kevin go home to get the house ready for her homecoming. We miss him... now all we can really do is wait to see what the tests tell us.  

Listening to worship music with lyrics that describe the faith and confidence I pray for.  I can freak out, feel powerless, and let my thoughts get carried away, or I can be intentional with my perspective, and remember where my strength comes from.

Praying the Lord gives comfort to Annelise as well tonight and takes this fever be gone!

https://youtu.be/gaV4IREQTss

https://youtu.be/eaja6maPoDk

Merry Christmas!

Merry Christmas!  Not where we thought we would be for this holiday, but we're keeping it as festive as we can.  The background is a hospital, but the joy we have in celebrating the birth of our savior follows us wherever we go.

12/23 - Christmas PICU photo shoot

We had a much happier baby last night.  She seemed so much more comfortable without the over full belly.  Problem is... the girl's gotta eat! 
We got some cute photos before she got hangry and then didn't go to bed until 2am.
They are planning to add food sloooowly today.  Praying that this slow stomach emptying is just a specific issue related to her response to having an infection, and not the new normal for our lives.
Thanking the Lord for awesome doctors, nurses, and RT's, who do really hard work every day... and praying they have the wisdom to choose a plan for Annelise's best health.

12/22 sorry so late, I forgot to publish this post!

Not going home today.  Honestly, even though the timing stinks... and there's the threat of infection just from being in the hospital hanging over our heads... I am grateful to have these compassionate and knowledgable eyes on our girl and her tummy issues. 
If you want to google "ileus", that's their best guess as to what Anneliese is battling now, caused by having the kidney infection.  Her tummy just holds on to the food that we pump in her via the gtube, and doesn't empty into the intestines as quickly as it should.  She can sleep okay, but when she is awake, she is very restless.  Her baseline attitude is bright eyed and great eye contact.  Lately, she has been turning her head from side to side over and over and grimacing a lot.  I do love that cuddling and containing her seems to bring her some calm.  It's small, but so nice to know we can have some part in making her feel better.
They are giving her tummy another break today, meaning they'll just give her IV fluids, not food.... and then slowly introduce the food back again.  Waiting for the ileus to resolve. 
I've added my daily coffee back into my life.  It did not appear that caffeine was having any effect on her tummy situation, and I'm a much happier mom with my morning iced coffee!  Better for everyone!
Kevin is off work for the Christmas holiday this week.  We are so excited to spend more time with him! 😁😎 It has been such a bummer to have him at work this past week.  I'm so used to us doing hospital life together❤ I'm abundantly blessed. Nobody I'd rather spend my days with than Kevin and Annelise Buchanan.🥰😍

12/20 update

Another beautiful sunset, another day of waiting and watching how Annelise does while we wait for the cultures they sent out to grow (or not grow).
We are planning to be here through the weekend, and I'm hopeful it won't be much longer than that!
Hidden blessing is that I totally get better sleep in the PICU than I was getting at home.  I know that is definitely not an good thing, but I'll take a hidden blessing whenever I can find one!
Just knowing the RN's are watching out for her lets me sleep without trying to keep one ear awake for the baby.
She still isn't quite back to her happy content self, but she is doing some good sleeping❤