9/30... Last Monday in the hospital?

We missed our father dad husband man something fierce today!  When he arrived after work, he brought my coffee like he always did in the mornings🥰

I was wondering if I would have more time for visitors when he went back to work, but truly, this place is a slightly well organized circus.  There isn't much down time at all, and when there is... It means I forgot to do something.  So I would love to see everyone, and I would love to introduce you to Annelise, but there is not a moment in the day where I don't expect somebody to come in and train us or check in or chaperone while we practice caring for her ourselves.  I'm so grateful for the attention they give to Annelise, and would not want any of them to come less frequently... It's just so much in a small span of time.  I don't think it could be better, it's just how the days are right now.  We are so far still looking at this Thursday as a go home date.

Today marks 16 weeks out of the womb for our fierce little lovie!  I just rocked her and sat with her and cried all over us today. I'm so thankful for every minute with her.  We had a great experience with our high risk prenatal care team here.  They are just across the parking lot from the hospital, so I've been wanting to go pass around some photos and show them who Annelise is.  They asked me to let them know when we got back from Omaha.  I look at the photos and think of all the well-meaning people there who checked and double checked to make sure we didn't want to abort her because of her extra chromosome, and because our life would be certain to be hard, like it really has been, and still is now.  I have to remind myself that they thought they were helping... But they couldn't foresee the beauty that we would miss out on if we had chosen to avoid this hard season.  One million percent worth it to be Annelise's mommy and daddy.  We know and have a relationship to God that is so much deeper and wider because of Annelise.  We understand our place in this world better because of the perspective shift that is continuing as days go on because of Annelise.  We see our friends and family going above and beyond, supporting our family with such hospitality, love, encouragement, all because of Annelise.  She is treasured so completely.  I'm excited to show her off to the office that only saw her in the womb, and only knows that we left the office to go to Omaha with a 50/50 chance to deliver her alive.  I hope they remember to tell other moms with a prenatal Trisomy 18 diagnosis about her valuable life.

So this day was sad because we didn't have our Kevin/Dad... But it is so good because it's another day that we're doing life as a family of 3!
Our palliative care nurse practitioner came to help Annelise and I get out into the sunshine for a few minutes today!  I know her job is hard, but I'm so grateful she does it.  Just like our NICU nurses, she gives so much to her profession, and people have better days because of her.  We tried out her stroller, went down the elevator, and sat on a bench in the shade.  It was a very important visual for me to see our baby in her stroller, outside of a hospital room.  This home life is really going to happen!  We did ventilator training #1 of 3 this evening, and are using the feeding pump that we will be using at home.  Doing our best to lessen what I know will absolutely be a steep learning curve.
We are still waiting to see what the neurosurgeon will say about the MRI results and the bump that appears above her shunt.  Rumor has it that he was in the OR today, so qhopefully we can see him tomorrow.
Goodnight everyone!

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Sunday- Tomorrow is back to work day

Monday will be Kevin's first day back to work at the office.  As I think about how over the top amazing it was for him to be able to be physically present with Annelise and I for these past nearly 4 months... I still can't help but want to whine and complain because he won't be able to be with us tomorrow!  I wish he could just stay with us all the time!  I really like my choice of spouse!  It's a reminder that the season is changing though... This is what we have been waiting for.  There was so much waiting, watching other people care for our baby.  Now we're gearing up for the season of doing! 😍

9/28 - Saturday.

We are doing more of the things involved in Annelise's care by ourselves... So when we go home we will be familiar with the machines and ways to care for her.  As of now... Next Thursday, or maybe the Monday after that are the probable discharge dates! We'd only wait for Monday if all of our stuff doesn't come in by Thursday.  The attending physician doesn't like to discharge patients to home on weekends, which I appreciate... Not that we plan to come right back, but we'd want lots of people working at the hospital if we did.
Baby girl slept a LOT today.  Gained 2 grams... She is soooo close to 8lbs!🥰
No puke today!  Yay!  We started her on a reflux medicine, and also shifted her feeds so she gets fed through her g-button for a longer time, so she doesn't have as much in her belly all at once.  I've got a less than 50% success rate on catheterizing... But I've got a surprisingly good attitude about it.  I even surprise myself!😆
The MRI results showed a 2mm cyst that is around the shunt.  Looks like we'll have to wait until Monday to see what her neurosurgeon thinks about that.  Praying that this can be quickly and easily resolved so we can get on with the business of going home.
I don't have many pictures because she slept so long 😴
Those are the updates for today!  We love knowing that so many people are continuing to think about and pray for Annelise as she grows.  I love being her mom, and I love our community so much!

Friday...maybe our last Friday at the hospital?

Just like the NICU, every day is very different in the PICU!  The morning was very full of specialists coming in... At one point, I went to weigh a diaper, and when I turned around...six people were walking in the door... From 3 different departments!  They had to talk amongst themselves to take a number and decide who had to come back later😬
The trach that they wanted to use for Annelise's MRI came in, so Kevin changed the trach himself (we plan on always changing the trach at home with both of us there... But both of us have to have 3 independent trach changes done so they will let us go home.  We both have 2 so far)!
The RT and nurse who took us down to the MRI were awesome.  If there wasn't grafitti in the elevator, I might think we were back in Omaha!
Annelise did so well, and basically slept through it!  They bunched her up with so many warm blankets, after her ride through the hospital in her hospital bed... She was out🥰
We haven't heard about the results yet.
We all finally rested after the MRI, and then got to have a special first meeting with another trisomy family who went to Omaha for heart surgery last year, and came back to Miller Children's.  We met 1-year-old Grace, whom I have been following the adventures of via Facebook since I was pregnant, shortly after we found out Annelise had T18.  Grace's Mommy is amazing, and a fantastic resource and source of encouragement.  I was able to get a glimpse of what it might look like to go to Omaha when we were just considering it... Because she had already gone before us! They went home from the hospital before us too!  And Grace is thriving at home!🤩
We are tired, but also getting to the point where we are ready to be home.  We're praying through the anxiety, and want to make Annelise's homecoming a happy occasion.  We'll be freaked out, because we are Kevin and Jeanette... Kevin reminded me of the first walk in our neighborhood that we took with our former infant foster son shortly after he came to our home (he will be one next month!)...we got to the end of the block, and I asked in all seriousness if he thought we should cross the street with the stroller....you know, because of how dangerous street crossing can be?🤣. We made ourselves take a longer walk and cross the street, and we survived!  Now we are parents to a medically fragile child.  We will go slow, but I know we'll cross the street with her one day too!

New day, 9/26

Today was better.
Annelise gets her formula through a feeding tube.  They adjusted the amount and time she gets her food so hopefully there will be no more barfing because of an overfilled tummy.  She still has low muscle tone in her swallow muscles, so she has a hard time swallowing her spit, and with a big gag reflex... There's still a concern often for vomiting and aspirating what she vomits into her lungs, which is super dangerous, as you know... Pretty much just air is supposed to go in your lungs!
She will get her MRI tomorrow, possibly.  The trach that she needs for the MRI was discussed, but ordered late, so we are waiting on it.  I joined a hydrocephalus fb group and showed them the photo of Annelise's shunt with the bulge at the top... And multiple people recognized it as something that happened to them or their kids who had it fixed with surgery.😔. One day at a time though.  That's the internet, we'll see what her MRI says first.
Because they took x-rays of Annelise's shu t, which goes into her abdomen... The tech reading the x-rays incidentally discovered that one of Annelise's hips is dislocated!  We got to meet with the Ortho specialist, who said it doesn't look or feel like it will just pop back into place.  As of now it's a wait and see deal. We discussed casting of her club feet in the near future and exercises I can do for her til then.  I feel lucky that there is a spina bifida clinic at Miller Children's.  The Orthopedic surgeon seemed very experienced!  It's very surreal to finally be talking to people about the cosmetic issues, having the big surgeries done and in the past!
Because she has a neurogenic bladder, she isn't emptying all of her pee.  So while she is going a lot, it's just basically the overflow that's in her diaper, and her bladder stays full a lot, putting it at risk for bladder... And then kidney infection.  I was taught how to use a catheter to help her pee today.  I got it so fast the first time, it was really empowering!  But the second time we tried it, I made her bleed, gave up, and cried. They cathed Annelise when she was a teeny tiny thing, and she didn't have leftover urine.  This recent development has been hard on my heart, since I had put in my head that God's gift to me was to not have to catheterize her, since so many kids with neural tube defects need to.  It felt like He took back His gift, and that hurt.  I'm the one that put those intentions on the Lord though.  Another reminder that His ways are not our ways.  If I am the one assigning intentions to God, I can just as easily say that His gift to me is meeting this urologist who gave her second opinion, which we looked into after much research and discussion, and because of her proactive stance on bladder health, cathing Annelise might save her kidneys!  Big picture though, it's a reminder that we don't always know what He is doing... But we know that God is busy working in our lives. Like the song says! His ways are higher.  I can't wait to see what He does next!  There's lots of opportunity for amazingness!

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9/25

I still have a bad attitude and I just don't think I have the energy to fix it.  Can I just say that my husband is an amazing human! He's cared for my fragile mental state all day, and is staying with Annelise tonight at the hospital, even though we know he'll get far less sleep than I would because I can sleep anywhere.  I'm just not happy with anyone right now, even my own self.  Except for Kevin and Annelise, they are the bee's knees.  I am sure that this too shall pass.  I'm comforted by my own mama who remembered my childhood church pastor, Max Hickerson, talking about the phrase in the King James Bible - "and it came to pass".  He said it shows us that things can change because it doesn't say "and it came to stay". Transitions are not easy but they are not permanent either.
This one is a doozy!
Annelise barfed again today, and right after her seizure meds, so she had to take them again!
We still don't know why the bump of what the neurosurgeon thinks is just cerebrospinal fluid keeps showing up and going away on the side of her head.  The good news is that her shunt looks like it's all intact...the bad news is that she needs the MRI so he can see what's in her head. 
Prayer requests for my attitude to reflect the trust I have in Jesus to lead us through this transition... For Annelise to stay still and calm during the MRI, and for wisdom for the neurosurgeon to know what's going on in our baby's brain.
They have a tentative discharge date of next Tuesday for us!
This is not congruent to the talk they gave when we got here about how they won't let us leave without us feeling ready to go home and take care of Annelise on our own.
We will not have nursing care set up by that time.  Our girl really is doing so well, but she does have a lot going on! I might have to just embrace that the first part of coming home is going to be terrifying.  I'm trying to catch up on sleep now so I'll be ready.
In the middle of the chaos.... Let's take a moment to celebrate this baby of ours.  What a strong girl she is, such a sweet soul.  We're so in love with her, and I believe God gave her to us on purpose.  She's the best thing to happen to us, and the reason for us running to God so often, and she's the reason we have a deeper relationship with the Lord and each other while walking through this season together. She has been carried by prayers and the love continues to pour out for this baby blessing! God has been so clearly at work in her life, and in the lives of her baby friends from the NICU too! He is bigger than all of the health issues she has going on. Even finding nursing care.  He is more powerful than the fullest schedule, and will provide what we need.  As I write, I'm reminded that His ways aren't my ways, and He doesn't promise we won't struggle in this life, but He always keeps His promises, and He says He will not leave us.  I feel like He's right next to me, very available whenever the moment arrives where I stop trying to control it all myself and flipping out about my disappointments.
He's also got very wise people here on Earth telling me to sleeeeeep!  So that's where I'm going!  Love to you all!

Tuesday 9/24

Well, things didn't settle after all.  We had a busy day of more specialists, and getting tests done to try and figure out why Annelise has a bubble of something at the top of the shunt in her head sometimes.  It keeps coming and going.  Praying that it is something that can be quickly resolved... Or maybe that it will resolve on its own?  That would be cool.  I'm pretty much over the top overwhelmed right now.  The hospital talks of discharging us soon, like next week... Yet we have no home nursing set up, and the supplies haven't all been ordered yet.  It's all in the works, it's just so.much.new.stuff.
I have never had so much empathy for the kids with autism that I used to work with.  I've got serious sensory overload.  Just like the kiddos, there are helpers all around me that want to make my life better, so they teach me something, and then someone else comes to teach me about a different topic, and then another specialist has some info for me.  So much talking about new things, my head swims.  I feel like I can't keep up with all the things!  I don't even have a way to fix it.  I feel like it is just going to be crazy until forever.
I know we have so many people praying with us.  I'd like some prayers for energy for us as parents please, and for the growth needed to let go of some of our anxiety about going home. 
For Annelise, please pray for her MRI tomorrow, or for the neurosurgeon to have insight into the issue with her shunt so that an MRI might not be necessary.  Also asking for prayer for her kidney health...overall health!  And for wisdom for the pulmonologist who decides what's next for her breathing treatments and how her airway is managed.
Thank you friends and family! 
I can't wait for the days when we aren't in this gigantic transition mode!  My task tomorrow in addition to the million things that will come up, is to look for peace that comes from knowing God.  The peace that can be found in the middle of the mess... Which is where we'll be for awhile at least, but not for always.

Sunday 9/22/19

I completely missed yesterday's update!  It wasn't even as busy yesterday as it has been this past week.  It kinda feels like one consecutive very long day here.
The draining piece of the adventure these days is just the very different recommendations that we are receiving for the same baby.  And I suppose I understand that all hospitals can't stock the same equipment, as there are so many options for respiratory therapy... But I still am having a hard time not taking it personally that nobody just did a little research and figured out how to give Annelise the same type of heated trach collar that she was proving successful with in Omaha.  She is now on the O2 ring which provides little humidification.  I am asking more questions, and often the same questions just to get more explanation, about why these decisions are made.... I know we are in the beginning process of figuring out what is best for her, and it has to take time.  It took time in Omaha too.  But it is very frustrating, and I don't feel part of the process in the same way that we did in Omaha.  I'm just really missing those people!
We are slowly collecting some awesome folks here too.  Her nutritionist is a fantastic human, there are some incredible specialists and nurses as well!
They just can't replace the great start that we got in Nebraska.  Let me show you what I mean!  I wish I had been thinking enough to take photos with all of Annelise's incredible NICU nurses!  I've documented her "big 3", three of the nurses who we had most often, and who I came to rely on for Annelise's comfort, teaching, managing my crazy, and loving our daughter!  Irreplaceable people who impacted our lives, and saved our baby's life!  It's hard to say goodbye to that!

Long Beach 9/20

Today is the second day in a row that Kevin and I changed a trach!  They change them daily here, instead of weekly at Omaha...so there is more opportunity to practice.  We probably won't keep this schedule up at home...but knowing we could because it's no big deal is awesome.  Just kidding, it's still a very big deal!  But it is getting easier, just like they said it would!
Annelise has been seizure free since before we got here!  So thankful for that.  They are trying to wean her off of phenobarbital, because the keppra seems to be doing a good job, and the phenobarb level in her blood just keeps going down to a level where we've seen her have seizures before, prior to the Keppra starting.
There are tests out to find out how serious her slightly low thyroid level is.  The doctor here who doesn't have a lovely bedside manner but might still have some good ideas, thinks that getting her thyroid level within normal could help her a lot.
We decided to stick with Omaha's recommendation about her kidneys for now, but keep communication open with room to be convinced to follow the current Long Beach recommendation if they can answer our questions and we decide their plan is best.
For her breathing..she is now on an O2 ring during the day, and the ventilator with CPAP mode at night.  So far so good...except for all the puking.  She has been gagging and puking daily, and I'm more inclined to think it has to do with the secretions/goobers than with reflux... but we're considering both. 
Our palliative care person is phenomenal here, and such a source of support for us by listening, and helping the communication between our specialists and us.  She also loves Jesus, and it's easy to see!
Prayer requests are for Annelise to thrive here, and that her team would find the best way for her to breathe during the day and night.
For her seizures to stay away, and for the puking to be gone too!  Secret option number two, is that if we have to deal with puke, like every other parent... That it at least just go all over her blankets and baby clothes... And stay out of her lungs forever!
Self care is a little trickier these days since being home.  Just for a limited time though.  There's really nowhere I want to be other than here right now.  Kevin is an amazing Dad, and I'm so sad to lose him to work at the end of the month!! His job has been so flexible with him taking time off though.  Thankful that God led him to accept the position with this group last year when he had to change groups.  They have been so amazing, I know I have to share him again with his workplace someday 😭
Annelise is sleeping well now, so I'm going to snooze myself!  Thank you all for praying, loving us, and for understanding that we need some time before we get more visitors.  I keep telling myself it won't always be like this! And we can do it!

I think today is Wednesday? 9/18? Better day than whatever yesterday was!

Today was definitely a much better day.  My favorite part was reading all of the encouraging words from my friends in response to my post about my shattered expectations of this transition.  Thank you for helping my heart! ♥️
I know God is working in my life always in ways I can't see... But it's so fun when I catch on to what He's up to!  Like today... I know many of you were praying that we would make some good and trustworthy connections here in Long Beach... We saw a bunch of specialists today, and they all appeared knoedgeable and varying levels of upbeat... But our GI specialist is an answer to prayer!  She came in and was super excited to meet Annelise.  She started off by saying she didn't know if we were religious at all... But that she thinks we were just meant to meet!  Her sister's friend on the east coast had just had a baby with Trisomy 18, 9days before Annelise, and they got heart repair in Boston because their home hospital wouldn't do the heart repair on their baby Hope, with Trisomy 18, even though that same hospital had operated on one of their other son's heart in the past!  She offered that she does not agree with how the medical community at large views our kids, and that she can't change everyone, but she can work on one person at a time!  I am beyond encouraged!  We will follow up with her outside of the hospital for sure!
The second blessing was our pulmonary specialist, who is very willing to look into a heated trach collar🥳, and has a vibrant energy too her that is just so fun.  I really enjoyed her personality, on top of the thorough way she explained things.  And THEN at shift change, we discover our nurse loves Jesus too.  She is lovely and is the icing on the cake of people that prayer brought us.
It has been a busy day!  We weaned Annelise back to her original vent settings, met some specialists, got her picc line removed... So no more tubes attached to her body!  It is her hundredth day of life, and while I still miss where we were... I am optimistic about learning to like this place too. ESPECIALLY when the specialists talk about making plans for when we go home!! ♥️😍🏡😁

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Back in California

We made it to Long Beach!  I've delayed in posting because my attitude has been so crummy, that I don't want to say anything I'll regret.  But I think it's fair to say I hate it here now... but I can see that in the foreseeable future that I will probably not feel this way forever, and things are very likely not as bad as they seem to me right now.
The flight was pretty good!  There was no bathroom on the plane, and that was the worst of it!  Annelise did soooo amazingly well on her first plane ride! She slept pretty much the whole time, waking up to stretch, then she'd go back to sleep!  She didn't even demand a new diaper! Which is very highly unusual for your friend Annelise, let me tell you 😊.
Flying into the airport and the ambulance drive to the hospital was really heavy but happy for me with all the feelings.  To be here at this point finally... to be on the streets that I know, to be bringing my baby home the healthiest she has ever been, it is happening!  To have the visual of places where I've been pregnant and wondering if that time was all I was going to get with her, but now being on the other side and having 14 weeks and counting worth of experiences with her amazingness, it's all pretty incredible to think about!
We got to the hospital, and found our room in the PICU.  Now even in Omaha, the PICU is very different from the NICU.  It's less of a homey feel, and more hospital-like. So that's an adjustment to make that we're prepared for.
We had her on her ventilator while in flight, even though she has been doing trach collar during the day for 12 hours and vent at night for the past few days in Omaha... just to give her some extra breathing support while in flight.  They gave her some extra oxygen on the plane, but just up to 25percent.  She has been on what they call "room air" 21% for a long time while on the vent. When we got to the hospital, our amazing transport nurse from Omaha told me she had been able to turn the oxygen back down to 21% on the ride to the hospital.  The team at Miller Children's was setting her up to go on a trach collar here, but they were starting to set up a cool air collar.  We had tried that first in Omaha, but it cooled Annelise's whole body temp, and so that's when we switched to the heated trach collar.
The RT's here haven't done a heated trach collar, and went to their educator who passed on the message that "we don't do heated trach collar's".... So that's the message we got... but it had been weeks since our last attempt at the cool air trach collar, and Annelise has grown, so we agreed to trial it and keep a watch on her temp.
Annelise had been awake and looking around for awhile at her new surroundings, Kevin and I were trying our best to bundle her up and shield her face from the freezing cold air that comes from the not heated trach collar.  As I was holding her up in bed, Kevin noticed her heart rate was dipping under 100, when it's usually 130-150's... She quickly stopped being her lovely self. And lost some color in her face, and closed her eyes.  We called in her nurse, who allowed us to take the trach collar off of her and called to get her set up on her ventilator again.  Her temp was two degrees below normal!
She really hasn't been the same baby since, and that is where my attitude is coming from.  She was doing so well back in Omaha, who agreed to heat her air for her.  I feel like we'll be trapped in this hospital and on the ventilator because they aren't familiar with something I saw working well in a different environment earlier that same day!  I want to go back to that environment!
We had rounds later that day, and the attending doctor did agree we should try and "MacGyver" something that works for Annelise as far as her breathing needs go. I don't know exactly what that will look like, but I'm happy that there's more of a conversation now, and not just "we don't do heated trach collar."
So we put Annelise on a warming blanket and her temp is back to normal... but her heart rate is super crazy and goes from the low 100's up to 120's and sometimes 130's... And she's had two normal blood pressures, all the others are low, which is not normal for her.  Her "secretions" /snot is also yellowish, when yesterday morning it was white.  They are testing her thyroid and wondering what else could be causing the issues... but I feel that it is obviously the hurricane of icy wind that I allowed them to blow on her face. Never again!
I crashed not too long after that and slept some.  When I woke up, the RT was checking her vent settings, when I thought to ask how much oxygen she was on, and foundbout 30%!  That's a crazy high number for her to be left on without needing it.  I have no idea why she's on 30. She was put on the vent at the end of a shift, so perhaps she needed it then, but nobody knew she could do with less support so they didn't try to wean her down?  Regardless, we started to wean her now... so I'm hopeful she can get back down to where she was 12 hours ago!
I miss my Omaha people, I'm really actually mourning the loss of not getting to see them anymore.  We had some of the most amazing nurses and RT's, and we joked about how property is so expensive in California, that we can't afford to get a bigger house to fit us all, but we could build a nurse tree house in the backyard where they can just come and live with Annelise for always! I miss them.  For Annelise and also for myself!
We got here too late for them to get her formula ready... So she hasn't eaten since yesterday before we left.
It is not all bad.  We had a beautiful welcome by the palliative care team here, who gifted us with a pink quilt that has Bible verses embroidered on it!  They are working so hard to help us feel welcomed and part of a team.
We had some very understanding nurses, who seem very willing to listen to us about Annelise, and don't make me feel like a creep for bawling all over the place. They just don't know her yet. And now they know me at my tired and overwhelmed, which is not the first impression I'd choose, but this is life.
This feeling is familiar, I felt it in Omaha too... it comes directly from anxiety that tells me that this current state is how life is going to be for always in the future.  I know from 99 days in the NICU though, that it's not true.  We'll have more conversations, we'll teach them about Annelise, they'll run more tests, and spend time  with her and get to know her too.  This is why Omaha kicked us out and told us to go home!  Doing this hard work now, will help the doctors and nurses know her, so when she comes back in the future for illnesses she might have, they will already have an understanding of all things Annelise.
It will get better, I know it.  But I can't make a sunshine and rainbow post because I'm not there. I'm sad about leaving my comfort zone. And I haven't built trust with these people yet.  Doesn't mean it's not coming though!  It just takes a lot of emotional energy! And the reality is, some people are better at their jobs and have more intuition than others.  So we as her parents do need to pay attention to her care and not just leave it up to the docs without question.
This has been a big step to take, and it does get us closer to home.  I'm excited to see friends and have them meet Annelise when we get more settled.
While we were taking off, I was so happy to think about how far Annelise has come, how far Kevin and I have come too, and the new people we are after having been through a whole bunch of new and intense experiences through our journey in Omaha. I still feel that way, and I feel God asking me to trust Him, because He's the same God... I don't talk to a new "California God" the way we have a "California hospital"..... God is the same and has been the same, and I can be confident of His love, and His power.  It's a new day!  That means new mercies!
This old song popped into my head as we were leaving Omaha, and even in my crabby state, I can sing of God's love forever, because He doesn't say all things will be easy.  He says when the easy or hard seasons are here, He'll never leave.  I've experienced that, and there is so much beauty in the scars.
https://youtu.be/MyZ-DKoU5cg

 Her pilot gave her this bear!

 This is one of our very favorite people and nurses who never ever wins the shirt raffle at work... So we put Annelise's footprints on a work shirt for her😊

 I made name tags for a lot of our nurses and RT's!  I wish I had started sooner to have them all!  This is not the full list of amazing people who cared for Annelise in the early days.