First surgeries = success!

Let’s start by recapping the last few days.  Thursday started as a pretty uneventful day.  I worked from Ellie’s room and she slept almost all day.  She looked crazy uncomfortable when she slept (in her usual position), but that’s because she arched her back and extended her head back to the point where the back of her head rested on her right shoulder.  She did this to open her airway.  I took a picture of her sleeping this way and sent it to my siblings saying, “this is the last day Ellie will need to sleep like this” because on Friday, she’d get a tracheostomy to help her breath with ease.  It was also the last day that she’d have tubes taped to her face.  We hadn’t seen her pretty face without tubes taped to it since she was 1 month old.  As scared as I was about her pending surgeries, I knew they’d be big steps in the right direction for bug. 

Mommy kisses for Ellie bug - she was in such a great mood on Thursday.

 

This is how she was sleeping - head back and back arched to open her airway.

She's beautiful here... but we couldn't wait to see our pretty girl without tubes and tape on her face.

Thursday evening, I was sitting at my laptop fielding some emails for work when I heard a knock at the door and little voices entered the room.  Ahhhh – my boys!  I was so excited to squeeze them a bit.  I was NOT expecting company, but company was so very welcome!  Following the boys, I saw my sister, Tracy, and friend, Kelly Berner.  They came in bearing a basket full of cards and gifts and goodies.  I peeked at a few things, but didn’t want to dive into the cards right away because I knew they’d make me crazy emotional.  I thought I’d wait until Brandon was off work to open them.  Kelly spent a long time cuddling Ellie and talking to me about what to expect on the road ahead.  Kelly is the only person I really know who also has experience with trach care for her kiddo, so it was so nice to talk to her about Ellie and about the ups and downs of this hospital life deal.  We went down to the corridor to see all of the other guests (Josh and the Platfoot kids, Emily and her kids, plus Kelly’s two girls).  The kiddos made things for Ellie and brought us a Gilligan's Island themed Christmas tree - perfect!  Em and Josh came up to squish on Ellie a bit, then we went down and ate in the cafeteria together.  Brandon met us there when he was off work.  After everyone headed back towards home, Brandon and I went back to our room and started opening cards.  We were completely overwhelmed by the outpouring of love from our community.  We are incredibly humbled by the Making Miracles Happen foundation and had no idea (for real, NO IDEA) that there was a facebook group set up to collect cards and such for us.  We are still absolutely speechless by the love that was put into that basket for our family.  I don’t know what else to say except “wow” and “thank you”.  We love you all so much and are completely overwhelmed by how good people really are.  That’s not the image that you see on TV, it’s not generally what you hear in casual discussions.  I keep telling B that the absolute best thing about being in a hospital is that you are only surrounded by love.  Professionals who devote their lives to making kids better, families who support each other while enduring their own nightmares, and communities that rally around families to shower them with love and support.  It’s really something.  Not that I wish this experience on anyone… but I wish that others could feel the avalanche of love that we feel right now.  Thank you all, from the bottom of our hearts!

 

Ellie giving Kelly a look like, "Okay, so here's the deal..."

So thankful for the Making Miracles Happen Foundation. 

May God Bless everyone who was a part of this surprise.  We are forever thankful!

Our family in our Making Miracles Happen/ Flying Angel t-shirts.

Ellie will grow into hers eventually!

Friday morning, around 7:30am, we handed our sweet bug over for her first surgeries.  While the heart cath/MRI/scope business was scary (because she had to be sedated), it was nothing compared to handing her over in the OR yesterday morning.  I know that we'll have to do this again in about a week, so it was great that soon after handing her over, we were able to talk about other topics and take our focus off of exactly what was happening.  The g tube was inserted first and the GI fellow came out after surgery to tell us that everything went textbook perfect during the procedure.  They were able to go in laparoscopically (through Ellie’s belly button) to insert the tube.  The GI docs changed out with the ENT docs so that Ellie could go right into surgery #2 – placing her tracheostomy.  This surgery went without any hiccups, as well.  The ENT surgeon (Dr. Frisher) came in right after that surgery and she explained that Ellie did great here, too.  Celebrations.  She gave us some particulars about the trach itself and how it worked.  After leaving the room, we had other questions that the four of us (Brandon, me and my parents) weren’t all on the same page with.  I called down to the TCC (the transitional care center), where Ellie would spend after leaving the CICU, to set up a tour so that we could get a feel for what the trach would look like and what kind of equipment we’d be looking at.  This was tremendously helpful and we were all able to ask lots of questions.  Finally, it was time to head back up to the waiting room outside of CICU to see our Ellie bug.

Ellie's entourage headed to the OR.  We wheeled back 3 different stands of

support equipment tethered to her.  At least I could carry her back.

We still had to sit around for about an hour before the CICU team was ready for us to come back and see Ellie.  I was incredibly nervous to do so, but when we finally got to see her, she looked great!  Our little girl looked calm and comfortable.  What a relief!  This time, her post surgery face was clear of tape and tubes – for once, she looked like she wasn’t struggling to get a breath, and she could lay comfortably.  Because she wasn’t struggling to breathe, her monitors were not alarming constantly.  It was peaceful and reassuring… different than we’d expected, but a very welcome surprise.  We left so that mom & dad could see her before they headed home.  Look at our beautiful little girl!!

She looks so much more comfortable this time than she did last week.  Look at those cheeks! 

We can fully appreciate them without tape and tubes.

 

Grandma & Grandpa Schroer checking out our bug.

I know this is hard to look at... but it's the best picture to help you see what is going on.  Her trach is in her neck here, and the tube (with orange tape) on the left side of her belly is her g tube.  Right now it has a tube coming from it... after 3 months or so, it'll just be a little button on her belly.

Brandon and I ate some lunch and tried to relax a little before heading back up to see Ellie again.  Then we headed north to meet up with the Beech family.  Mom & Dad had met up with Shalynn in the morning so that she could take the boys while they came down for Ellie’s surgeries.  Andrew and Shalynn had the boys at their house (playing with their two kiddos who are the same age) all day.  We met up and had dinner and relaxed at their house before heading back to Cincinnati with the boys for a weekend of cuddles and movies and play time. 

 The boys playing in the toy box at the Beech's house.

 

Lance & Connor playing.

This morning, Brandon left for work and I crawled out of our bed and made myself comfortable between those 2 sleeping little boys.  I was able to cuddle on those little monsters for a good hour before they got up.  We had a usual morning… but it’s amazing how the simple things are so precious when you don’t get to do them every day.  I gave the boys a bath and laughed with them as they splashed each other.  We ate pancakes and eggs in the big kitchen and then played in the toy room with kiddos from around the world.  Kaleb took a liking to a 1-year-old beauty who was here from Croatia for treatments (because the best surgeon in the world for her condition is in Cincinnati).  The boys “rented” movies from the library and we came back to our room to hang out and watched one before lunch. 

Before the first movie was over, my friend, Joan, called and said she was over in the hospital for a surprise visit.  How awesome!  She came over to our room at the Ronald McDonald House and we chatted for a while before heading back to the hospital for lunch.  Our boys aren’t allowed up in CICU, so I’d been hanging out with them all morning and calling Ellie’s nurse for updates here and there.  Because I had Joan here, she sat with the boys (who were being totally rotten, by the way) in the lobby so that I could go up and see Ellie quick.  When I walked in, the nurse and respiratory therapist were doing trach care on Ellie – which is pretty icky right now.  Ellie didn’t look as peaceful as she had yesterday, which was heartbreaking.  I asked the nurse how she had done this morning.  She said that at one point, she was pretty upset and she was “wiggling all over the place and trying to cry”.  She required her pacifier constantly and had a higher heart rate, blood pressure, temperature and breathing rate.  I instantly thought that maybe Ellie had been storming… but because I wasn’t there, it was hard to say.  That made me feel awful.  The nurse said that they gave Ellie a dose of morphine (Ellie is on a morphine drip right now), but there was no change.  She then gave Ellie a dose of Tylenol, which made no change, either.  Finally, they gave her Ativan (Ellie’s rescue drug for autonomic storming).  The nurse said, “She likes her Ativan”.  Sad face.  If I were to guess, I’d say Ellie was surely storming, but again, it’s hard to know without being there.  They said she was not smacking her lips, which is usually a tell-tale sign… but she was doing almost everything else.  She did have her propranolol (the beta blocker used to prevent the storms), but stressful situations can still trigger storms.  It’s hard to say.  The only thing I knew for sure was that I felt guilty for not being there.  I stood and looked at Ellie, tears streaming down my face and arms aching because I knew that I couldn’t pick her up out of her bed until Wednesday.  How do you not hold your baby for 5 days?  Ugh – this is going to be a hard week. 

Ellie was awake and looking at me, but she didn’t smile when I sang her song to her.  She just kind of looked up at me all pitiful like.  She coughed a few times, and no sound escaped her little mouth.  As more tears streamed down my face, the nurse asked if I thought she needed more pain medicine.  No – I don’t want her to have any more medicine than she needs... and I know they could decide when she needed more.  I told her that I knew it’d be different with the trach, but I thought she’d still be able to make sounds.  She explained that with the swelling from surgery, no air would could pass the trach and make its way to Ellie’s voice box, so she’d be totally silent for a while.  That doesn’t feel right at all. 

The nurse asked me how much of “this” we knew before Ellie was born.  I said that we knew in April that Ellie had Down syndrome… and that news alone was so hard to process.  We knew that she had an ASD (a hole in her heart between her atria) then, too… but didn’t know that she had a complete A-V Canal defect for another month.  Upon delivery, we knew we were having a baby with Down syndrome and a severe heart defect.  Oh, what I would give today if she only had Down syndrome.  Huh – how crazy is that?  I’d give anything for our child to just have Down syndrome.  Nine months ago, Down syndrome was devastating.  Now it would be such a relief if that was all that we were looking at.  Every time I have this conversation with people, it brings up the topic of prenatal testing.  I guess I didn’t realize that it was pretty uncommon to do the quad test in your second trimester.  People always say, “we didn’t want to know because it didn’t change anything”.  Well, I can see that.  I just don’t ever look at prenatal testing as something that would ever determine how we felt about our baby.  I think that’s a very common misconception – so common that every time the topic comes up, it’s always followed with the same “we didn’t test because we knew we’d keep our baby”.  What??  Us, too.  Maybe my purpose in life is to let people know that you can be prolife and still have non-invasive prenatal testing done.  Ha!  It didn’t change how we felt about our baby, but it did change the plans we had for delivery.  Did I have some crazy anxiety as our pregnancy progressed?  Sure.  But we were much more prepared for her delivery, too, and it allowed us to line up therapy and intervention and find a great team of professionals to help us on our journey.  I can’t say enough how positive the experience was and how strongly I feel about prenatal testing.  If we had delivered Ellie in a different hospital, would she have been okay?  Maybe.  Would we have been devastated at her birth instead of being ready to embrace our different child with a severe (and very scary) heart defect?  Absolutely. 

Okay, off of that soap box.  Back to our reality.  I told the nurse that we still didn’t know that Ellie had any other “issues” until we were admitted in Cincinnati before Thanksgiving.  We knew she was throwing massive fits on a daily basis.  We didn’t know these fits were autonomic storms.  We didn’t know until the day after Thanksgiving that she had hypoplastic right heart, in addition to her A-V Canal defect.  We didn’t know she had so many respiratory issues, either.  Essentially, we had no idea what a busted up little mess our bug was until just a few weeks ago.  Praise God that we had an appointment in Cincinnati.  Praise God that Ellie was a little turkey for them, too, and we could get all of these things diagnosed.  So, as much as I’m completely bummed out today that our bug looks so miserable and I can’t hold her and she isn’t able to make a sound… I’m also so incredibly thankful that our eyes have been opened more in the past eighteen days than any other time in the past year.  I’m thankful that God had brought Ellie through the tests and procedures and surgeries like a champ.  I’m thankful for a job that can be done from a hospital room.  I’m thankful that we have such an amazing hospital just two hours from home full of professionals who are among the top surgeons in the world for our daughter.  I’m thankful for the support of family and community as it rallies around our little girl and embraces our family each and every day.