2 Months & Reality Check

Brooklyn turned 2 months old yesterday!  We had a hectic day, but it ended well with some friends coming over to celebrate with cupcakes.  We are very thankful that we’ve had 62 days with our sweet Brooklyn!

Corrie and I have been cruising along fairly well over the past couple of weeks.  There have definitely been good and bad days – both emotionally for us and with Brooklyn’s health.  Brooklyn’s bad days have really been manageable and mostly ‘normal’ baby stuff.  We had a reality check today at our regularly scheduled appointment with Dr. Caldwell, our pediatrician.  He ran some blood work which came back showing that Brooklyn’s red blood cell count was low.  It wasn’t low enough to sound an alarm, but low enough to catch all of our attention.  Dr. Caldwell informed us that we  will continue to monitor this and will likely have to make some more decisions about her care sooner rather than later.

This was a reality check because Corrie and I have enjoyed the complacency that has come as a result of a couple slow weeks.  We’ve settled in to a groove and her diagnosis hasn’t seemed very real.  As I’ve said in a previous post, this is our ‘new normal’.  Although we have oxygen tanks, feeding tubes, and other medical supplies in our house, life was getting fairly comfortable.  Today was different as we came face to face with the very difficult emotions and types of decisions we faced while in the NICU…all of which were all too familiar.  Her diagnosis and the fragility of her life were center stage again.  We think about these things every day, but they seemed like they would happen several months from now…at least we hoped.

So…we are very thankful that we have had the privilege of 62 days with Brooklyn, but we are really scared that we won’t have a lot more.  I don’t want to give the impression that Dr. Caldwell, Corrie, and I feel like she only has a couple more days because we don’t feel that way.  A week ago we all had the discussion that we were hoping that we’d have at least 4 more months (6 total) with her, but after today, I feel like 1 more month may be more realistic.  That being said, these are all guesses.  The good news is her oxygen saturation, heart rate, and other vitals look good.  We’ll take it!

We’re scared.  We hope for many more days.

Please pray for:

-Peace

-Brooklyn’s red blood cell count rises

-Corrie & I to have clarity, wisdom, and strength if we have to make some difficult decisions in the next couple weeks.

-All 3 of us to stay healthy and avoid the flu, RSV, etc.

-Joy & laughter with Brooklyn every day.

Thank you all so much.  We have been overwhelmed by your love and support!

-AH

2 Month Birthday Party

Corrie & Brooklyn enjoying a wagon ride in the TX Hill Country

Photo Slideshow

We were blessed with some incredible photos by Elle Mendenhall (www.EllaBellaBaby.com).  Please enjoy the photos of Brooklyn in the video she created (linked below).  The song is quite appropriate and communicates a lot of what we are feeling.  Also, it would mean a lot to us for our friends and family to bless Elle with a lot of business, so book her for your next baby photo shoot!  We won’t be able to thank her enough for what she has given to us.

Enjoy our beautiful daughter!

Brooklyn’s Photo Slideshow

-AH

Home & Our New ‘Normal’

After being in the NICU for a couple weeks, the doctors and nurses began to tell us that taking Brooklyn home was a real possibility.  She had beaten the odds and made it passed the two week hurdle, so we began praying for the courage to take her home.  There is a sense of security to life in the NICU.  It’s very surreal living there, but the security of having the “most expensive babysitters in town” watching Brooklyn 24/7 was nice.  As time progressed, the Lord gave us the strength and courage to take on the challenge of bringing her home and becoming her full-time caretakers.  We learned everything we needed to learn over the course of a week and set up our support system through Hospice Austin and our pediatrician Dr. Caldwell.

After being in the NICU for almost a month, we brought Brooklyn home on 12/6/12!  Corrie and I were very excited and extremely scared.  We had grown accustomed to NICU life and the ‘normal’ realities of bringing our first newborn home from the hospital coupled with our ‘normal’ of managing her oxygen, 6 different medications, feedings, etc. became our ‘new normal’.

We decided to start this blog (Day 47) because we want to tell Brooklyn’s story and our journey as parents walking through this crazy difficult time.  We are starting to hit our stride with routines but the unfortunate reality is that a lot of the same messiness still exists.  Corrie and I still live hour by hour not knowing when Brooklyn may have a seizure or begin her decline in some way.  Her decline will likely occur through distress in her breathing, heart, or a combo of both, so we are constantly monitoring her for any of these signs.  Brooklyn has had one major incident when oxygen was obviously not properly getting to her body and we had to administer a dose of morphine which brought her back.  She has also had several minor incidents where she has pulled out her feeding tube and I’ve had to replace it.  Yes, this has been a crazy time and will likely continue to be unpredictable.  Thankfully, we have great 24/7 support from Hospice and Dr. Caldwell.  They continue to fight for Brooklyn’s peace and comfort.  We get to speak with them daily and see Hospice and Dr. Caldwell at least once a week.

Our commitment to celebrate and enjoy Brooklyn continues to happen but it still isn’t easy.  We still wake up each morning asking the Lord for strength and looking to each other for encouragement and support.

Corrie and I celebrated our 5th anniversary on 12/30/12, and I couldn’t be happier with where we are and that we are together.  For those of you that knew us before we were together, you know that we were definitely an unlikely pair and very different.  The truth is, God knew what He was doing when we got together and we’ve come to know that we are God’s perfect provision for one another.  Our marriage is stronger and more intimate than I could have ever imagined standing at the alter 5 years ago.  It has become crystal clear to us in this journey that any illusion of control is gone and humility and surrendering our selfishness is key to the continual success of our relationship and loving Brooklyn well.  God is definitely breaking us of idols of control and pride and reminding us that He is in control.  We’ve always known this intellectually but haven’t really known this in our hearts until the past couple of months.  It’s still a daily struggle to acknowledge this, but we usually land in this truth at the end of the day.

Our hope is that God uses our story to His glory and that you’re encouraged by His ability to provide hope, peace, and strength when life seems unfair and messy.  We’ll continue to tell our story here, so we hope you’ll stay in it with us, however it may look, and join us in celebrating the gift of Brooklyn.  We love her so much and are grateful to be her parents.

-AH

Leaving the NICU

Adventures since we’ve been home

Walk on Town Lake

Bath Time

Hook ‘em!

1 Month Birthday Party

Christmas Eve Service

The Shift

Over the next couple days, Corrie and I continued to wrestle with one question…”Why?”  This didn’t make sense.  We knew God loved us and Brooklyn, but why would He allow this to happen?  There were many difficult conversations with God, each other, family, friends, doctors, etc.  It seemed like we couldn’t get away or out of the messiness.  Additionally, Corrie and I had to make the hardest decisions we’ve ever had to make regarding Brooklyn’s care.  I’m still angry that we had to make these decisions.  I hate that we had to decide then give DNR orders to the doctors.  It’s frustrating because it still makes me sick to my stomach.  Why did we have to make these decisions at 27 years old with our first kid?  Our prayer during this decision making process was that God would unify Corrie and I around these decisions.  We didn’t seek counsel from family or friends.  This was our decision and will always be our decision.  Thankfully, the Lord was gracious and we stayed unified around the fact that we wanted to do what was best for Brooklyn and ‘comfort’ or palliative care would provide that for her. The pain & suffering that Brooklyn would go through while potentially experiencing multiple intubations & subsequent extubations, CPR, heavy medications, open heart surgery, etc. didn’t seem like a pleasant life for her considering her diagnosis and limited time.

So…the shift.  We made the decision that it was time to start celebrating and enjoy Brooklyn every moment and day God gave us with her.  We’ll celebrate her now and grieve when it’s time to grieve.  We’re clear that we are blessed by the fact that she was born and has had many more days than most babies with Trisomy 18.  Most are still born and those that aren’t typically don’t make it past the first week or two.

We wake up and choose to enjoy her, celebrate her, and do ‘normal’ things.  It definitely is a choice because we feel like our default is to focus on the negative and how we won’t get to see our daughter go to her first day of Kindergarten, etc.  Like I said before, this is a constant struggle.

I can honestly say that we have only been able to make these difficult decisions and continue to celebrate her day after day because of God’s strength.  We know that strength, peace, and joy more than any other time in our lives.  The Lord’s strength is good, never-ending, and exactly what we need.  For reasons seen and unseen, He has entrusted us with the care of Brooklyn.  We’ve definitely asked “why us?” because we don’t feel able to take care of her.  We’ve prayed for the strength and ability to do this, and He has delivered…every time.  I’m very thankful for that!

Our first walk outside of the NICU

Brooklyn’s first time outside.  Mormor was able to join us. (Grandma in Swedish – Mother’s mother)

We read a book to her on our second trip outside.  She also got to touch real grass!

First Bubble Bath!

Having some fun with Brooklyn…her first bubble bath!

The Diagnosis

We had some amazing nurses at Seton & Dell.  They did so much for us.  They made us feel at home, safe, heard, and helped us celebrate and enjoy Brooklyn.  

It was the day before Thanksgiving (11/21/12).  Corrie and I came back to Brooklyn’s room to find that one of the nurses had prepped for a photo shoot to celebrate Brooklyn’s 1 week birthday.  This was an amazing surprise, so we jumped in and took some really fun pictures.

Right after we completed the photo shoot, Dr. Hodges (head neonatologist for the Dell NICU) walked in her room.  He asked us to sit down, and I immediately switched from the joy of the photo shoot to fear.  I knew Dr. Hodges had something heavy to talk about… He informed us that the test result we were waiting for had come back from the Mayo Clinic.  100 out of 100 of Brooklyn’s cells tested positive for Trisomy 18 (a.ka. Edward’s Syndrome).  We were devastated.  The doctors had told us that this genetic/chromosomal disorder was a possibility, so we were hoping and praying that Brooklyn’s troubles wouldn’t be rooted in this.  Pretty much anything else would have been ok with us because we knew Trisomy 18 is a lethal disorder.

Dr. Hodges began discussing the diagnosis with us.  We didn’t know what to say or think.  We were definitely scared, angry, sad, and frustrated.  He told us that there is no way to tell how long Brooklyn had to live.  She could live hours, days, weeks, months, but the odds were high that she wouldn’t make it beyond her 2 week birthday.  Dr. Hodges prayed with us before leaving us to be alone with Brooklyn.

I won’t ever be able to use words to communicate the level and types of emotions that were running rampant in Corrie and me.  We went to places we never knew existed and definitely didn’t want to be there.  This began an extremely messy time for us.  We sat in that room weeping over the reality that this dream would soon be gone.  This journey had already been really difficult – 8 months of trying to get pregnant, Corrie had morning/all-day sickness for almost 24 weeks, a known heart defect during the pregnancy, a dramatic emergency c-section, and now this! I was angry and wanted the madness to stop.  We wanted nothing more than to get out of this long period of pain/frustration and move into a long life enjoying Brooklyn.  I wanted to fix things, but there was nothing I could do.  Trisomy 18 is a random disorder that begins soon after conception when the cells start forming the baby.  Brooklyn has 3 #18 chromosomes when she should only have 2.  We did nothing to cause this and there was nothing we could do to make it go away.

-AH

Brooklyn’s transport to Dell Children’s Hospital.

Getting used to NICU Life

Corrie eventually joined Brooklyn and me at Dell Children’s on 11/17/12.  We were very thankful that she healed so well and was able to be discharged so quickly!  Corrie had only held Brooklyn for 5 seconds, literally, at Seton because she stopped breathing, so they had a lot of catching up to do when she arrived at Dell.  I’ll never forget when Corrie arrived at Dell and really got to hold her for the first time.  Corrie’s anxiety dissipated and the nurse noted that Brooklyn’s heart rate dropped (safely) to a level she hadn’t seen her at before…Brooklyn was relaxed too.

Once Corrie got to Dell we started settling in.  We had a room to sleep in every night and our hands were always clean after having to ‘scrub in’ 100 times each day. Ok, maybe only 10 times each day.  The doctors and nurses were trying to keep her comfortable and help her progress along while we waited for more answers from pending tests.  Brooklyn was extubated (breathing tube removed) and nourishment and meds that were being given through an IV switched to a feeding tube.  They also stopped the EEG scan and determined the anti-seizure meds were working great…she hadn’t had a seizure since she was at Seton!  Corrie and I lived in the NICU and got to know a lot about how she was being taken care of.  The NICU staff also became part of our family…they really are amazing people.

This is how life looked until one of the big test results came back the day before Thanksgiving, 11/21/12.

-AH

Brooklyn right after she was extubated with the EEG leads still on:

Corrie and Brooklyn

Brooklyn’s Room at Dell Children’s Hospital NICU