An Aubree Update - 14 Months Old & 3+ Months in the Hospital

* I wrote this blog post (sans pictures) the day before Aubree coded and was reintubated, what we now know was caused by her left main bronchus becoming compressed due to her chest wall restriction. While I wasn't going to post this because of how drastically things changed, I decided to go ahead and post this update. This is how things were for the 5-6 weeks or so that she was extubated and thriving before she outgrew the size of her chest. This is what we are fighting so hard to get her back to! 

Love this bright, smiling face!

 Where do I begin to do an update on Aubree?  So many things to catch up on!  Many family and friends have been wanting to know what she is up to in more details so here goes!

Enjoying reading books with Daddy

While Aubree was intubated for so long, she couldn't talk because air was being inhaled and exhaled from her lungs through a breathing tube.  Without air passing by the vocal cords, she couldn't make any sounds.  This was especially scary for us at times because she could be silently crying, and we not know about it because there was no sound.  After she was extubated, Aubree was still silent for many days.  One night, after she had been extubated for a few days, she went to "talk" and sound came out.  The look of surprise and joy on her sweet face was priceless!  She literally talked for two hours nonstop, saying all the words she knew, mimicking what I was saying, and babbling away.  We praise God for her voice coming back, as long term intubation can cause damage to vocal cords.  Praise God for restoring what was lost!  It is such a joy to hear her talk, and we literally celebrate every time she talks with cheers for Aubree.  The words she says consistently are: hi, bye, Da for dad, uh-uh (meaning no, like if someone puts the stethoscope on her and she wants it off), her own version of Amber, and Papa sometimes.  She also babbles many sounds and has started making kissing sounds back to those kissing at her, usually on video calls on the phone.  When her Daddy is gone, I will ask her if she wants to call daddy.  Aubree starts saying "Hi, Da,"  when I ask her and keeps saying it until I get him on the phone.  This girl loves her Daddy! 

Sorting shapes with Daddy

As far as working with her hands, Aubree is bringing things to her mouth, clapping objects together, shaking instruments, bringing empty cups to her mouth like drinking, holding a telephone to her ear, holding other things to her ear pretending they are a telephone, pretend eating and smacking play food, playing piano and drum, pushing items through a shape sorter (with help from mom and dad getting the right shape lined up), turning book pages, pushing sound buttons on sound books, taking objects out of a container and putting them back in the container, and rolling a truck back and forth.  A lot of these skills are ones she has had to regain complete mastery of again and others are new (like the pretend eating, rolling the truck, and pushing items through the shape sorter.  While the occupational therapists here say Aubree is doing great from a fine motor perspective, one thing they told us to introduce and work on is scribbling and marking on paper with markers.  We just cant seem to get her interested in wanting the use the marker, but we will just keep trying.  I'm honestly not too worried about it :)

Talking on the phone

Aubree is also enjoying getting to eat baby food again!  We try to squeeze in 1-2 sessions with baby food a day.  So far, she has had applesauce, peas, pears, and peaches and loved everyone of them.  She continues to eat as long as it is fun, then moves on to playing something else since she isn't truly hungry from having continuous feeds running all day through the feeding tube down her nose.  We are hoping to get her transitioned to feeds back to her gtube and by mouth so that we can get rid of the tube down her nose.  The one down her nose goes past the stomach into the intestine because when food is put in the intestine instead of in the stomach, it should not be able to be vomited.  Aubree was struggling having wretching and sometimes vomiting episodes, usually related to the her getting medicine.  We have started giving her medicines extremely slowly and this has resolved that issue.  Praise the Lord for resolution!  Once we get this under control, it will be safe for her to have larger volumes of feed in her belly besides just baby food. 

Eating yummy baby food and helping feed herself

While Aubree has a jumper at home, she definitely needed one here at the hospital to help her bear weight on her legs and get her in more of a standing position.  We got reminded of her needed a jumper here at the hospital from seeing Aubree's buddy Madden in one at the hospital in Florida and ordered one that night.  She has LOVED having the independence of the jumper again!  It is also great for her to work on reaching above her head since some of the toys attached to the jumper are taller. 

Pure JOY!

 While she still struggles with withdrawal at times, we are making progress on weaning some of her medications, both sedation and lasiks.  We are almost finished transitioning her from an infant formula to a more age appropriate formula.  Like everything else, we are doing this slow and steady, but Aubree is tolerating it well. 

Loving having Aunt Amber here for a few weeks! 

Above all, we are so thankful for all that God has restored to Aubree.  Our sweet girl has come so far, and we give God all the glory.  Only He could do the miraculous works that have been done in Aubree's life.  Thank you Lord! 

Happy on the 4th of July

The cutest pigtails I have ever seen!

3 Months

Today marks three months that Aubree has been inpatient. She was admitted to Arkansas Children's Hospital on March 17th via Angel One helicopter and has remained inpatient at either ACH or CHOP since then. In the hospital, she has spent has first St. Patrick's Day, Easter, and birthday. She has cut seven of her eight teeth and we have celebrated our seventh wedding anniversary, Daddy's 30th birthday, Mother's Day, and Father's Day all from a hospital room.

We truly did not think we would still be in the hospital after so long, but God had other plans. On the other hand, there have been times throughout this hospitalization that we weren't sure whether or not we would even be as far as we are right now either. Aubree has been so very critical to at times during this hospitalization. While this has been absolutely excruciating for us as parents to see her in such a way, it has provided many opportunities to cry out to God in our weakest states. So many opportunities for God to intervene and provide comfort and healing as He sees fit.

The thing that becomes more and more apparent the longer we are on this medical journey with Aubree is that doctors are just ordinary people doing the best they can with the knowledge and experiences they have, just like we all do. Don't get me wrong, we know we are getting the best of the best in medical care for our girl and have amazing doctors on her team, but doctors can't just fix things. One of my sister's sweet students brought her a handful of pennies recently and told her to send it to the doctors so they would make Aubree all better. Such a precious gesture, and how I wish at times it was as simple as the doctors jut making her better. Sometimes, I find myself wondering how there can be so many unknowns with a hospital full of doctors. Those times are just great reminders and further affirmation that God is truly the Great Physician and the only One who is truly all knowing. While the doctors and medical staff have been wonderful instruments in Aubree's healing, we know it has been through the direction of God.

While there were so many firsts and celebrations that we wish were at home, we praise God for the things we have been able to celebrate at the hospital: her first major cold NOT being lethal as we were told it could be, surgery allowing both of her lungs the opportunity to grow and support her, successful extubation, a currently stable respiratory status, and almost completely weaning off of IV meds that she has been on for almost 3 months, and so many more reasons to celebrate.

Throughout all of this, we have been carried by God and our sweet family and friends. Thank you to all of you who remain by our side through this longer than expected journey. Please continue to pray for us, especially Aubree. 

 

 

 

 

 

 

A Year Ago Today

 

A year ago today we got to bring home our precious baby girl.  What had started out on May 3rd 2012 as a brief stint of breathing tubes, supplemental oxygen, configuring the perfect calorie concentration, and a possible (and later confirmed) diagnosis of Jeune's syndrome had turned just 4 weeks later into two first time parents bringing their baby girl home with nothing more than a car seat. 

We were so excited to bring home our previous baby girl to the nursery we had prepared for her. Throughout the entire pregnancy and her NICU stay, Derrick and I had been preparing our lives and our hearts to become Mama and Daddy to Aubree, and she was finally coming home with us. No more driving home night after late night from the NICU with an empty carseat.

It was honestly hard to leave the NICU behind in a way because the group of doctors, nurses, and therapists there had become like family in four short weeks. They had taken care of our daughter at such a critical time in the most caring and skilled way possible, had patiently explained every step in the NICU to us, and had supported us throughout the roller coaster of progress and emotions that is the NICU. Having literally travelled to some of the best hospitals all over the country, we have yet to experience anything like the level of care and dedication that we did at the Willow Creek NICU. We thank God continually for Willow Creek NICU!

That afternoon on May 31st, we signed discharge paperwork, buckled her into her carseat, and Daddy carried her as we went down the elevator where the car awaited us. daddy drove home while Aubree and I sat in the back. It was very surreal to leave the hospital with our girl having no monitor or support whatsoever.

We arrived home to balloons and welcome signs. Once we arrived home, we took Aubree on a tour of the house with extra time spent in her nursery. God had blessed us with being able to take our little jewel home, and we were so thankful!

With it being such a big day, all three of us were pretty exhausted so we took a family nap with Aubree in the bassinet beside us in the bed. Only the peace of God could explain us being able to fall so hard and fast asleep with no monitor attached to Aubree or eyes actively watching her for the first time in four weeks. We had trusted God with Aubree's life from the beginning (which He worked miracles in from the start), and we had to keep trusting Him for her well being.

Since Aubree came home, our walls have never been filled with more love, joy, excitement, laughter, and sweet baby chatter and giggles. Daddy has commented on the deafening silence and emptiness in our home without Aubree in it. I can only imagine and know it must be so very hard on him when he must be there all alone without "his girls," as he calls me and Aubree.

A year later, we find ourselves back in a hospital room so very far from home. While the length of stay Aubree's current hospitalization has far exceeded four weeks in the NICU (previously her longest hospital stay), we remember the sweet joy of taking our daughter home from the hospital and look forward to that day. While we know it will not be soon, God already knows when we will be taking Aubree home from CHOP. We look forward to her homecoming in God's timing, just like we did a year ago.

 

Mommy & Daddy's Anniversary at CHOP

Seven years ago today, I married the absolute love of my life.  Derrick is genuinely the sweetest, funniest, warmest, most infectiously happy person I have ever met.  We seriously have so much fun together no matter what we are doing.  I still find myself rolling laughing at him at the silliest things, but I genuinely think he is still hilarious.  Without a doubt, I hit the husband jackpot, and I remind him of that frequently! He's the best!

God really knew what He was doing when He paired us together.  While we have completely the same viewpoint on the big stuff (God, money, politics, raising Aubree, etc.), we are so different in so many ways, and it makes the best balance.  We are definitely never bored with each other!  He is so organized in his thought processes, and my mind can run 90 miles an hour on a million different things at once.  He laughs and says he can see when my wheels are turning in my mind.  He cleans one room of the house at time until they are all done while I do tiny bits throughout the house and get them closer to clean.  He is an early bird, and I am a night owl.  He is a planner, and I am very spontaneous.  We definitely balance each other! 

 

After almost 6 years of marriage, we just thought we were happy.  Then, we got the icing on the cake when Aubree came into our lives. She was the missing piece that we didn't know was missing!  Our sweet girl is a balance of us, too!  Aubree looks just like her Daddy, and acts just like her Mama!  Oh my! He is the "fun" one with Aubree that can always make her laugh and giggle and smile like crazy, and I am the comforter who can always get her to sleep or calmed down.  With all of Aubree's medical things, he deals with all of the insurance, medical bills, and such, and I worry about appointments, therapies, and supplies.  He is seriously the very best Daddy to Aubree, and I love him even more than I thought I could by seeing him love our daughter with all of his heart. 

 

In the midst of all of the joy we have experienced with Aubree, some of the most difficult times of our life together have been watching our sweet baby fight and struggle from a respiratory standpoint.  During these times, we have clung close to one another.  Throughout all of these difficult times, from the NICU, to the hospital stays for surgeries and illness, Derrick has been my rock.  The roller coaster of these experiences with so many highs and lows are so very excruciating, it is difficult for me to express in words.  When in the midst of a low point when Aubree seems to be doing worse, it sometimes feels like it is breaking me irreparably.  But Derrick always comforts me, consoles me, and points me right back to God who knows what the future holds for Aubree regardless of whether we do or not.  When I occasionally have slipped into darkest of places trying to deal with all of the unknowns that are before us, he always points me back to the light and hope in Jesus Christ.  I am so thankful for him loving me in spite of the bawling, broken mess that sometimes comes out and doing everything he can to help put the pieces of me back together.  Thank you Lord for a spiritual leader who You use to bring me always back to You, where all hope is found!

One day, a very special young man will have EXTREMELY big shoes to fill to capture the heart of our sweet Aubree because her Daddy already has her heart and takes such sweet care of it.  I can only pray that she finds a man one day who is as good to her as her Daddy is to me.  A man who leads his family to the cross of Christ, loves his family unconditionally, and is the most fun, handsome man on the planet!

Happy 7th Anniversary, Babe!  I love you and love being by your side as we live life together.  Everyone, please pray for me as Derrick must return to work for few days each week starting tomorrow, and I have never had to do any of this without him.  Please pray for Derrick also because this will be his first time to ever be away from Aubree since she was still in the womb when I was a few months pregnant.  He in no way wants to leave his girls, but it must be done.  God give us strength through the times of separation.  Most of all, Lord, continue to work in Aubree's health and life and help us to make the best decisions for her. 

Happy 1st Birthday, Aubree!

A year ago today, Derrick and I anxiously awaited meeting the sweet baby girl whom we had grown to love over the last nine months.  Though she was already in existence and very much alive, we couldn't wait to meet her face-to-face.  With the majority of both of our families living hours away, it was a blessing for a C-section for breech to be scheduled.  This meant all of our family members and friends could be there for Aubree's birth without travel time interfering.  26 people were in the waiting room anticipating the birth of Aubree while Derrick and I were back in the OR. 

Our sweet girl just a few minutes old (and the first time I got to see her!)

That afternoon, our sweet girl came out silent, but kicking.  While she was beautiful in our eyes, she looked a terrible gray color and was immediately receiving help from NICU staff that was present.  Another blessing from the C-section was that NICU staff were already present per hospital policy.  God knew what he was doing making this baby breech!  Instead of Derrick carrying Aubree out in his arms as was the plan, she was wheeled out in an isolet with our family and friends only getting a glimpse of Aubree on her way to the NICU. 

Our sweet Aubree, less than a day old with a breathing tube in.  She didn't have to keep it very long. 
So beautiful and such a fighter even then!

We will be forever grateful for the excellent, loving care Aubree received in the Willow Creek NICU.  While it was extremely unexpected for Aubree to need such assistance after birth, God took care of Aubree and held us up in such a trying time.  Also, having literally taken her to other places in the state and across the country, we know Aubree could not have gotten better care anywhere else.  Thank you Willow Creek NICU for all you did and have done for us and our girl!

Sweet sign Derrick's mom (goes by Lady to the grandkids) made to help celebrate Aubree's birthday.

While there have been surgeries, trying medical times, and so many other hard times throughout the last year, none of those things pale in comparison to the love, joy, and happiness we have experienced since Aubree was born.  Aubree is the bright light in our lives we didn't know we were missing.  Made in His image, Aubree has shown us even more glimpses of the joy of the Lord.  Also, we have an even greater understanding (though still not a full understanding) of how much our Heavenly Father loves us and Aubree.  We love our precious daughter more than we ever thought it possible to love another person, and God loves her even more than we do!  Hard to even fathom because we love her so very much! 

Sleeping beauty in her birthday bow and bib

Also, having Aubree has really brought to light the great sacrifice God made on our behalf of sacrificing His Son Jesus Christ so that the debt of our sins could be paid so that we might spend eternity in Heaven with Him.  What great love God must have for us to sacrifice His Son so that we might become sons and daughters? I cannot fully comprehend this because I cannot imagine having to turn my back on Aubree and for her to die the most painful of deaths so that others might have eternal life.  Thank you Lord for giving us the hope of eternal life by trusting and believing in Jesus Christ! 

Still smiling!

Aubree has also brought so many people to the feet of Jesus, crying out to Him to heal and comfort this sweet baby.  So many prayer warriors and some praying for the first time in a while have come alongside us and prayed on behalf of our sweet girl.  And, what glory God gets when she has improvement, shows signs of healing, or even remains stable.  Our great God is definitely in control, yet hears and answers the prayers of His people. 

 

While it has been the hardest, this has truly been the very best year of our life!  It has been so much greater than we could have ever anticipated!  We are so thankful for everyday that God has given us with Aubree and look forward to each additional day the Lord gives us with her.  I know that this is not the typical 1st birthday post with milestones and statistics (which are great to record and celebrate), those are not the things that came to mind when thinking of the blessing our sweet Aubree has been to us over the past year.  We are most thankful for who she is, the way God created her before we even knew she would be coming, and the sweet spirit He instilled in our girl.  While milestones and places on growth charts are great, we don't love Aubree for what she can do or how she appears physically.  We love our precious jewel for who she is, our precious daughter made perfectly in the image of a King! 

 

Banner made by Derrick's mom (goes by Lady to the grandkids). 
So sweet that she worked so hard to help make Aubree's birthday special in the hospital. 

 

 

Unexpected Events Part 3: ACH

 

 

Here are links to Unexpected Events Part 1 and Part 2 in case you want to get caught up. 

*Three things I forgot to mention in the last post that I really want to remember:

1.) Aubree's room in the PICU was the exact same room Derrick's cousin Alex was taken to after he was transported via Angel One after a severe car accident.  Out of all 26 beds in the PICU, we were put into one with strong ties to family and strong emotional memories.  God provided such hope in that situation, and Alex is not only survived but is thriving by God's grace. 

2.) On Aubree's first full day in the PICU (Tuesday, March 19th), it was a very trying day with every noninvasive approach to help Aubree stay adequately ventilated eventually failing time after time.  That Tuesday morning, the nurse that was assigned to Aubree looked so familiar to me.  I asked her if she had possibly taken care of our dear friends' daughter Hannah Crumby, and she had.  Nurse Kelli had actually been a "favorite" who had taken care of Hannah frequently during her time at ACH, which is why I recognized her.  I cried once the connection was made because it reminded me of the spunky four year old that didn't get to go home from ACH.  This was just the beginning of a day filled with tears; however, God knew we needed a familiar face that trying day.  There is no doubt God provided Kelli for us that day, to help us take care of our girl.  Kelli is also a first-time mama to a baby just a little younger than Aubree, and she was so sweet and understanding about the pain of seeing our girl hurt.  Kelli was so sweet and provided such great care to Aubree.  Thank you Lord for giving us just what we needed right when we needed it, even something we didn't know to ask for.

 

 3.) Prior to intubation, an echo was also done of Aubree's heart to make sure it was still functioning properly and had not enlarged or anything from all of the extra work her body was doing that was keeping her heart rate high.  Thankfully, the echo was clean! 

Back to Part 3!  Sorry for the interruption!  After Aubree was intubated that night, I was finally able to rest somewhat because there was truly nothing else I could do for her, even from a comfort standpoint since she was sedated for being intubated.  I knew that God had been and was taking care of Aubree.  Once intubated, anything that I could do to "help" her was taken away, and all of the healing was left up to God and the medical staff He could use to help with His plan for Aubree. 

A blood gas an hour after she was intubated showed her CO2 had been cut in half (from the 120s to the 60s) and her pH was no longer acidic (it was 7.14 when they decided to intubate; the lowest end of normal for pH without being too acidic is 7.35).  Her heart rate was also down to normal levels since her body could finally rest.  I was finally able to rest a little bit that night knowing Aubree was finally being ventilated (able to blow off her CO2), even if it was being done mechanically for her.  Our poor baby just needed a break to let this illness run its course and for her to be able to rest and recover. 

The next morning, Aubree took a "field trip" to the IR part of the hospital to have a central line placed.  This is a much more stable catheter than an IV and is placed in a larger, more stable vein in the upper arm that leads directly to the heart.  Since Aubree had to be stuck so many times for blood gasses and since she such a hard stick for IVs (took 3 nurses and about an hour and a half total to get one IV placed where the vein didn't blow at ACH), we were thankful for her to not have to be stuck constantly for blood draws.  Also, meds, IV fluids, and the like could be easily given and work even faster since they would go directly to the heart.  If an infection develops in the central line, it can be very dangerous because the infection would go straight to the heart, but lots of precautions are taken to keep the insertion site and all lines leading to the central line as sterile as possible.  Aubree did great during the transport out of the PICU and back.  We are still so thankful for this line since it prevented (and is still preventing) so many sticks from happening to our sweet girl. 

The next few days consisted of Aubree remaining stable and healing as the vent was doing the work for her.  One issue that came up as the attending doctors directing care for Aubree changed and with each change came a different opinion of whether or not Aubree should be attempted to wean off of the ventilator or not prior to going to CHOP.  Aubree was intubated on a Tuesday (exactly three weeks prior to her scheduled surgery date) and this conversation started on Friday.  The doctor coming off service (the one that intubated Aubree) did not want to attempt to intubate her.  The weekend attending wanted to assess Aubree and let her tell us if she was ready.  We were of the same opinion as him.  The attending coming on for the next week was extremely gung ho about pulling the tube. 

During rounds with the "gung ho" doctor, he was very ready to start weaning and pull the tube.  I expressed concerns about her not being ready to wean vent settings in preparation of pulling the breathing tube because she was still symptomatic of rhinovirus (which is what got her intubated in the first place) and acting sick.  She already works hard to breathe and just couldn't handle the work of being sick on top of the work she was already doing.  Respiratory muscle fatigue kept her from ventilating like she should.  Also, I expressed concern about the method they were wanting to use to wean her vent settings.  They were wanting to wean her peep (the tiny air pockets in the lungs staying at least mildly inflated even when inhaling) relatively quickly and put her in volume support instead of pressure support.  Aubree has always pulled pretty great volumes, but struggles with peep because of her chest being restricted.  Also, from her previous extubation after surgery, she did not tolerate volume support but did tolerate pressure support very well.  While I was always able to say my piece, I kept feeling like what I was saying was falling on deaf ears.  I kept hearing "well, this is what we typically do" and "we'll just see if she's ready and, if she's not, we'll just put her back on her old setting; no big deal."  I kept advocating for Aubree and reminding them that she is not a typical child, so what typically works for other kids isn't what will work for her.  I also kept expressing concern about her not being ready because she was still symptomatic of being sick, and I was afraid of her becoming even weaker from a respiratory standpoint by weaning her vent support and that it would be very difficult for her to rebound because of her being fatigued from the illness already.  I requested for doctors and APNs from Aubree's team come to the bedside many times so that I continue expressing my concerns, and they came.  However, I kept getting the same responses.  The nursing staff taking care of Aubree were very supportive and helped relay my concerns as well. 

I literally did everything I could think of to keep them from weaning the vent except put my body in front of it and refuse.  I guess next time I will put my body in front of the vent if I am ever faced with the same situation because once her vent settings were weaned, every concern I had about them weaning the vent settings came true.  Her blood gasses became horrible, she was requiring more oxygen, her chest xray showed the worst signs of atelectasis (the tiny air pockets collapsing from not maintaining peep) it had shown since she had gotten sick, and she wasn't bouncing back once they put her settings back to what they were before the wean.  Because she had gotten so weak with them making her do respiratory work she wasn't ready for, they had to increase her vent settings to even more support than what she was on before the weaning because she was even more weak. 

To say that I was upset would be an understatement.  I had done everything I could think of to try and protect my child and no one would listen.  And Aubree was paying the price.  I ended up talking through many tears to the attending that was on for that night (but not part of Aubree's team during the day), and for the first time it was acknowledged that they do not have experience treating a baby like Aubree and did not know exactly how to treat her.  Now, I love ACH and am so thankful that they were able to safely intubate Aubree and stabilize her.  The medical professionals there are skilled and wonderful and save children everyday.  However, no hospital is an expert in every field.  They can't be.  ACH is renowned for many areas of concentration, but treating children with thoracic insufficiencies such as Aubree's  is not one of them.  CHOP, the #1 children's hospital in the nation and one of the largest, does not specialize in everything either.   It's just not possible. 

Also, as any parent of a child with special medical needs know, no one knows your child as well as you do.  While we don't have all of the medical training that doctors have, we specialize in our little girl.  It definitely takes everyone working together.  We don't know everything and want and need the help of the doctors.  Doctors change, hospitals change, but mom and dad are always there and are the only absolute continuity of care.  However, I struggled in this particular case to get anyone to think outside of the typical child box to think that would be best for Aubree as the unique individual she is, even after giving them information that we know about Aubree from taking her to doctors who specialize in babies like her.  The same overnight attending assured me that she would personally meet with Aubree's team in the morning before rounds to get a better game plan going for Aubree.  The attending also said she would get the wheels in motion to get Aubree transported to CHOP so that she could be assessed to see if she was ready for surgery and optimize her as much as possible from a respiratory standpoint for whenever surgery would be. 


I was very thankful that I was finally able to get through to someone about how Aubree is not the typical case, but hate that it took her declining from a respiratory standpoint to get anyone to listen.  That night after we finally got her back to decent blood gasses, she was running fever again, which she hadn't been doing the last couple of days.  It was also not breaking with single doses of Tylenol or Motrin.  She also started pouring snot.  I was told it was just because of the rhinovirus, but I knew it was something different because of the changes in Aubree. Upon my insistence, we did a viral panel and cultured everything possible to see if infection was brewing somewhere.  The culture from her breathing tube came back positive for MSSA (a type of staph) that she acquired from being intubated, from being in the hospital, and I believe her weakened state from the vent weans.  Aubree was given antibiotics and started to improve from the secondary infection slowly. 

Rounds from that point on were pretty uneventful and revolved around Aubree remaining stable for transport to CHOP and getting the logistics of the transport arranged.  It was set that Aubree would go to CHOP a week before her scheduled surgery date.  During the rest of Aubree's time at ACH, she continued to have several super sweet nurses who would comfort her, love on her, and be so sweet to her as they provided the best care.  We also had some great respiratory therapists, a dedicated case manager arranging the transport, a sweet social worker checking in on us in case we needed anything, and lots of great medical staff including several doctors.  While we did have that one major hiccup, we don't harbor any bad feelings towards Aubree's time at ACH and are so thankful for all that they did to help our little girl when she was in such great need. 

While there were lots of very difficult times, I want to remember the blessings that occurred while we were there.  Little Rock where ACH is located is substantially closer to my family and Derrick's family.  We were so fortunate to have lots of family with us every day and taking care of our physical needs.  We literally only had to eat one meal from the cafeteria because of takeout, home cooked meals, and snacks coming from our family and friends.  What a blessing!  It was also so nice to see everyone since we cannot yet take Aubree anywhere, and it had been awhile since we had seen so many of our family members.  My family also fixed and brought several of our favorite dishes for a yummy Easter lunch, which is the first meal I have gotten to have with almost all of my family since Aubree was born. We hated the circumstances, but we were thankful to be constantly surrounded by those we loved.  Literally, our families were the first visitors of the day in the PICU and the last visitors to leave.  Knowing we are not alone in the trying times and that we have an army of people that love us and Aubree helps us stay strong.

My sweet sister Amber and friend Monica made Aubree several sweet gowns for her to wear while she was in the hospital that were very cute and girly.  This gesture meant so much to us!  Amber quickly got very comfortable with the sewing machine and even deconstructed an Easter dress and sewed it back together in a way that Aubree could wear it with all of her lines and tubes coming out every which way.  Amber also went out and bought all kinds of goodies and monogrammed her an Easter basket for Daddy and I to still get to play Easter Bunny and put together an Easter basket for Aubree.  We wish we could have had our sweet baby home for her first Easter, but we are so thankful to have her here with us on Easter!  Thank you Lord for the sweet blessing of our daughter and for hope through Jesus Christ!

 

 

Unexpected Events Part 2: Helicopter Transport to ACH & Intubation

If you missed it, here is Unexpected Events Part 1.  I had just left off at leaving the pediatrician's office to go about 15 minutes north to have a blood gas and chest xray at the ACH regional clinic.  When we get there, we also ask about going ahead and seeing the pulmonologist because Aubree had a scheduled appointment with her anyway the next day.  Once we get in a room, the pulmonologist is able to see Aubree briefly for a quick listen.  She does not detect a crackle like the pediatrician had heard.  Next, the respiratory therapists come and take a blood gas.  Our sweet girl is still feeling crummy and is needing 3 liters of oxygen.  Derrick, Amber, Aubree, and I are back in the room for what seems like quite some time before the pulmonologist comes back in the room and tells us Aubree CO2 is in the 90's and her pH is acidic. She says that the only option is for Aubree to be taken to Arkansas Children's Hospital via helicopter to help her severe respiratory distress.  This is obviously very hard to hear, that our baby is critical to the point that the safest way to transport her is via helicopter, i.e. the quickest method.  It is also recommended that someone go home to get Aubree's home cpap to put her on until the helicopter could get there to see if that would help get her CO2 and pH at more stable levels prior to transport.

At this time, we also ask if we would be able to fly with Aubree.  They did not know, it would not be determined until after the transport crew had arrived and assessed Aubree.  Even feeling bad, Aubree wants to be with Mama or Daddy or someone she knows, or she can get scared.  So, as hard as it was, Daddy left us there and took off for Little Rock in hopes of beating the helicopter or coming close to being there when Aubree would arrive so that at least one of us would be there for her upon arrival in case I was not able to go with Aubree.  The medical staff in the clinic were not optimistic about me getting to ride and said it usually only happens about 1 in 5 times.  Derrick also called and sent his parents (closer to Little Rock than us) to ACH to have a familiar face there for Aubree in case I was unable to ride and him not have enough time to make it.  As Derrick was leaving, he literally dropped Amber, who was still with us through all of this,  off at a gas station close by where our dear friend Bailey (also on Spring Break from teaching) came to pick her up and take her to our house to grab our bag (I had already packed one over the weekend just in case we electively went to ACH), get her car, and bring the cpap machine back to the office. 

On cpap at the ACH clinic back home, getting her CO2 down somewhat

Amber brought the cpap machine up and we got Aubree set up on it.  After being on this for maybe an hour, her CO2 went down to the 60s.  Not great, but much safer.  The staff at the office got us a couple drinks, snacks, and some lunch with their office order.  While I hadn't eaten or drank anything in about 20 hours and had no appetite, my sister lovingly shoved a couple bites and sips down me to keep my hypoglycemic tendencies at bay.  Thanks for warding off the shakes, Sis! 

The helicopter took a little bit longer to get there than normal because of weather in Little Rock, but made it there a couple of hours after the call from the pulmonologist.  The pulmonologist also told us to be prepared for them to intubate her for transport because that might be the safest way to transport her.  Upon assessment from the transport team and with them conferring with the PICU attending who would be taking Aubree once she got on the ground at ACH, it was determined that Aubree was stable enough to be transported on her home cpap as long as it would work and nasal cannula for when that was not available.  The transport respiratory therapist really worked hard and did some thinking outside of the box to make the home cpap even an option for the transport because the interface Aubree uses is not compatible with the transport ventilator.  We were so thankful that she did not have to be intubated at that time!

How we got to Little Rock

Also, after much prayer, we found out I would be able to ride with Aubree.  Thank you, Lord!  We left the office with Aubree on a stretcher with a fresh IV and on a nasal cannula for the ambulance ride to the Springdale Airport.  Once in the ambulance with access to power, we put her back on cpap. I can get very carsick and seriously thought I might puke in the back of the hot ambulance in the 10 minutes it took to get to the airport.  I prayed for the Lord to help keep me from puking there or in the helicopter as I prayed for Aubree.  During the transition from the ambulance to the helicopter, Aubree was back on the nasal cannula of oxygen.  Once Aubree was in the helicopter and the power was on, we hooked her up to her home cpap.  Off we went for a 50 minute ride to Little Rock.  (Side note: The night before, some show was on and showed people flying.  I mentioned to Amber that I hadn't flown since last summer and kind of missed flying from all of our traveling days.  Maybe God was preparing my heart for what was ahead, but this is definitely not what I had in mind!)  The home cpap lasted about 15 minutes, but the pressure and altitude change from our elevation interfered with the pressure the cpap was supposed to be delivering.  We put Aubree back on the nasal cannula with oxygen, and she stayed doing great.  Sweet girl slept the whole time.  And I felt much better than I did in the ambulance and did not get sick.

In Little Rock, we landed on the roof of ACH.  There is no lip or catch or anything up there close to the edge.  For safety, they took me off first and got me inside where I waited and watched as they got Aubree unloaded off of the helicopter and wheeled into the hospital.  This took a few minutes.  By the time I could see her again, she was darting her eyes back and forth, right to left with her pupils huge.  She looked so scared and couldn't find her Mama.  Once she finally found me, she just started bawling.  I got as close to her as I could as they are trying to wheel her onto the elevator and talked soothingly to her to try and calm and comfort her.  This broke my heart for her to be scared.  I can't imagine how much worse this would have been for the whole transport instead of just a few of minutes.  Thank you Lord for keeping us together!

Because of the delay from the weather getting the helicopter to NWA, Daddy actually beat us to the hospital by a little bit and was able to meet up with us pretty quickly once we got in Aubree's room in the PICU.  Tons of people were in and out in the beginning.  The attending and fellow decided to put Aubree on a heated high flow nasal cannula of oxygen which can sometimes help flush the CO2 out.  This seemed to keep her CO2 in the60s, then the 70s.  Better than the 90s which got us into this mess, but not good since her CO2 is usually in the 50s.  Since it was approaching evening anyway, since Aubree is usually on cpap at night, and since her CO2 was in the 60s earlier in the day once on cpap, it was decided to put her on cpap through the night.  This kept Aubree's CO2 in the 60s for a few hours, but kept creeping up and by morning, her CO2 was in the 90s again. 

The next course of action was to put Aubree on bipap on the Trilogy (really the only ventilator sensitive enough to sync with babies like Aubree and detect their shallow breathing) to try and help her blow off her CO2.  This is a newer ventilator and not very many respiratory therapists (RTs) have experience with it.  Literally, every RT on the floor in the PICU was in Aubree's room trying to figure it out.  Thankfully, a relatively new RT had had testing on it and was familiar enough with it to set it up.  Upon my suggestion, I also had them call her old RT from the Infant and Toddler Unit who had figured out good settings from Aubree on the vent when she had trialed it back in October when Aubree was there for observation.  Thankfully, that RT was working that day and could help out over the phone.  It took a village, but we got her set up on bipap.  A blood gas after Aubree was on there an hour showed her CO2 back down in the 60's.  Unfortunately, the same thing that happened with cpap happened with bipap.  It would work for awhile, then not be enough to keep her CO2 down.  When her CO2 reached the 90s on bipap, we went back to heated high flow nasal cannula since that was the only thing in the mix of all that we had done that didn't get her CO2 in the 90s, only the 70s.  During all this, while the blood gasses gave us definitive numbers of how she was ventilating (getting rid of CO2), Aubree was really good at letting us know how she was doing.  If her CO2 was high and her pH acidic, she was very lethargic and sleepy, so much so to the point that she didn't hardly flinch when given a shot and have an iv done.  But, if her blood gasses were better, she would look at books, play with toys, wave at Daddy, etc.

How we spent so much of the time before she was intubated, snuggled up together on the hospital bed.
 Poor baby doesn't feel good.

Also throughout this time, many labs and tests were run, but the only thing that came back was that Aubree was positive for rhinovirus.  While this is usually just a common cold for most, it is super serious for Aubree and babies like her.  This was the same illness that caused Aubree's buddy Madden to have to stay intubated for months after his surgery because it knocked him down so bad. It was knocking our sweet girl down pretty hard, too. 

As soon as Aubree was put back on heated high flow nasal cannula, she almost immediately became inconsolable.  Thrashing, crying, miserable for over 50 minutes.  Aubree has never in her whole life been in consolable for any longer than a couple of minutes.  I can always comfort or soothe her.  I was so concerned about the way she was acting and knowing things were going wrong that I had a doctor come to the bedside to make sure she was at least safe for the time being.  The resident came by and said we would just see how the blood gas went.  I was finally able to console her enough that she wasn't thrashing about, but at that point she was pretty much responseless and just laying in my arms.  Shortly after they drew the blood gas, the fellow (who had admitted Aubree, was so sweet, and had a baby of her own at home close to Aubree's age) came in with tears in her eyes and didn't speak for awhile.  When she finally was able to speak through being  choked up a little, she told us her CO2 was 122 and her pH was 7.14, the worst either one had ever been.  We had no choice but to intubate Aubree because she was in respiratory failure.

Poor baby would get so incredibly sweaty when her blood gasses where off.  Still cute even when she didn't feel good!

All that we had been trying to avoid was about to happen.  However, I was honestly not surprised because of how awful she had been the last hour.  The fellow confirmed that her CO2 was so high that it was affecting her organs and altering her mental state, hence her being completely inconsolable and thrashing about.  In a way, I was honestly relieved because Aubree was going to get a break and get to rest.  Our sweet fighter had done everything she could, but her respiratory muscles were just way to fatigued from the extra work she already does and the work from being sick.  I can also have comfort in feeling that everything that could have been done was done to try and keep Aubree from having to be intubated.  We had been fighting right along with her, and we all needed a break.  I literally hadn't slept or had more than a sip or a nibble in several days because of watching Aubree constantly and trying to comfort her by holding her, rocking her, and anything else we could think of.  We were also thankful that Aubree's intubation was able to be planned instead of in an emergent situation.  We were able to get in some good snuggles before she would have to be indefinitely sedated.  About 10 minutes before they intubated her, they were preparing the room for the procedure, and she woke up and was sitting up in my lap.  She was smiling at us and looking at books.  It was so good to see a little bit of her and her sweet personality before it would be suppressed with pain and sedation meds. 

While we could have stayed and watched her be intubated, we decided not to and went to the waiting area with our family.  While we could handle it, we have nothing to offer in that situation and the room was so full of people helping.  We were also so physically drained from unsuccessfully trying to get her better, a break could benefit us as well. While her being intubated was not what we wanted to happen, we were so glad that something could be done to help Aubree as she fought this illness. 

At this time, I remember talking to Derrick and saying how this was probably for the best.  We were killing ourselves trying to do anything we could to help her get better (all of this under advisement of her doctors of course), but things kept getting bigger and bigger out of our control.  We are not in control of any of this.  God is.  It took Aubree's respiratory well-being being totally taken out of my hands with the intubation for me to be quickly reminded that no matter how hard we worked  to keep Aubree safe and well, her entire life, health, and happiness is not up to us as her parents, but is completely in God's hands.  We are so very thankful God has a plan for Aubree's life and that He is in control. 

To be continued with Part 3: ACH and Transport to CHOP

I know we all look pretty exhausted, and its because we are.  And I had been crying all day long.  It is physically painful to see my sweet girl sick and declining.  This is the last picture we took together as a family before she was intubated.