Reflections on the One Year Anniversary of Rebekah's Tracheostomy

Rebekah - June 2, 2009 - Shortly after tracheostomy and g-tube operations.

Rebekah - May 14, 2010 - Playing with the Occupational Therapist

By the time Rebekah was 1 month old, she was having such severe apnea attacks that we nick-named her 'Blue Belle' because she frequently turned blue. In fact, in one 24 hour period, her monitor recorded a total of 384 events and maxed out the memory after just being downloaded! So its really no wonder why she was our Blue Belle.

Despite her apnea, she managed to grow and fight for life - but we were worn out. Finally, in a point of desperation, exhaustion, and hope, we decided 'palliative care' was not enough and we admitted her to the local Children's Hospital. It didn't take long for us to hear more than one conversation with a medical professional that our 'incompatible with life' daughter most likely had central apnea because her brain wasn't functioning properly and, if we continue down the path we were headed, she would end up trached, on a ventilator...a virtual vegetable with no emotions, reactions, awareness. And looking down the road a year from 'now', we would, like so many other parents, regret the decisions we were about to make.

Thankfully we did not listen to those opinions, and we requested a bunch of tests to determine exactly why Rebekah was having so many apnea attacks. She had a CT scan, a bronchoscopy, a sleep study, a swallow study, an MII (stomach acid probe test), all kinds of blood tests and cultures. Surprising all of the doctors, the evidence post-tests pointed to obstructive apnea in her upper airways, most likely caused by her micrognathia (small jaw). Within a two week period of these tests and trying out various solutions to address the obstruction, it was decided the easiest solution to give her the best quality of life outside of the hospital was a tracheostomy. Exactly one year ago on June 2, 2009, Rebekah had this life-saving operation and began the road to 'Redefining Incompatible with Life'! So yes, the doctor was right about the tracheostomy. But the rest of the picture is significantly different.

Was it easy? No, absolutely not. There were a lot of sacrifices across the board in our family. Our children were cared for by friends and church members for a month while Michael or I stayed by Rebekah's side around the clock. When she came home from the hospital, she was extremely fragile and we did not go anywhere or do anything. My kids' had a pretty 'boring' summer with no fun things to do. We didn't venture out very often. I was consumed with the task of caring for Rebekah and their quality time with Mommy and Daddy suffered for many months and into the fall school year.

Was it worth it? Absolutely YES! Despite all of the sacrifices and lack of 'fun', our family learned some very important lessons.

• We make sacrifices daily for the ones we love.
• We stand beside people when they are at their weakest.
• We help those who cannot help themselves.
• We love people (such as those who did not agree with our pursuit of extending Rebekah's life), even when they are unlovable.
• We humbly accept help when we cannot do something alone.
• We get to witness the hand of God at work when we are faithful and loyal to Him.
• Most of all, I think they learned that Mommy and Daddy love them all and would do anything for any one of them, and that EVERY life deserves a chance (even those that do not fall into the category of 'normal').

Rebekah may be extremely delayed, we cannot just get up and go somewhere at a whim anymore, and our family life doesn't fall into the category of 'normal', but here we are a year later with a thriving happy baby that most definitely knows us, loves us, and has an opinion about many things that she is more than happy to share! And, all praise given to God for Rebekah's progress and strength, this summer will restore the memories of fun summer breaks with vacations, visits to family, and lots of activities to fill up weeks on the summer calendar.

It still isn't easy...

• We've had some stressful moments along the way, but adversity can bring family closer together if you are willing to love one another and sacrifice for each other.
• Our family makes choices and decisions based on a love of God, a much deeper understanding of the fragility of life, and believing in the blessing of children. So our choices and decisions do not always follow the mainstream way of thinking. For that, I am often excluded from the crowd.
• I've lost some friends along the way. I'm sure it wasn't on purpose on either side, but when you just can't up and go when you want to, well...people tend to forget about you after awhile. (Out of sight, out of mind...). So I hear from my 'old' friends a lot less and that is jsut a sad fact of life. It does, at times, make me feel very lonely and secluded though, and I may have a momentary pity party for myself. That is, until my four boys come and give me a big hug and Rebekah bestows on my a smile that would melt the coldest of hearts.
• There is always that fear in the back of your mind that the scale will inevitably tip the other way and I will have to eventually face the inevitable. Each week brings more news of T-18 pregnancies that resulted in sadness or sick children that have lost the battle. The statistical evidence glares me in the face daily, and I feel like a momentary lottery winner with my 'long-term survivor'. But the truth is that death is a reality for every single one of us here on earth, because NONE of us are guaranteed another moment. So we need to enjoy each moment we have and fill it with important, purposeful things that we will not regret when we look back on our life.
  

Do I regret the past year and the decisions we've made?
How can I? I have a husband that loves and cherishes me, I have a beautiful family of five kids, I have a support group of t-18 friends that understand the hardships and blessings, and I know more than ever before that my Lord and Savior holds me close and comforts me.

Besides Rebekah redefining incompatible with life, I think I have also redefined me. I think the Lord has opened my eyes a lot in the past year. In general, little things bother me a lot less than they used to. It's not quite so important for my way to be the way things are done. It's not as necessary to get the last word in during a conversation or disagreement. I don't need to impress anyone. It's a lot less important to keep up with the Joneses, or for that matter, even care what they are up to. And I think I can truly love others much better than I could before (or at least understand what that means!).

I am in a good place right now. Our family is in a good place. And it is due to the blessing of raising Rebekah. So a year later, I asolutely do NOT regret any decision we've made or the changes it has brought to our family. We are blessed.

John 1:16 (NIV)
From the fullness of his grace we have all received one blessing after another.

Milestone(s) I Never Thought Would Come...

Today we celebrate probably the biggest milestone of Rebekah's life... her FIRST birthday!! Praise the Lord!

I tried to submit a birthday announcement to our local newspaper a few weeks ago, but they no longer do birthday ads. So I submitted a birthday celebration announcement to their online website as a community event. I was called a few days later by a reporter that wanted to do a special interest story on Rebekah! That story will, I believe, run in todays The Greenville News paper! I have no idea what the final story will say/include...but hopefully it will be a story of inspiration, God's grace, faith and miracles!

So, on Saturday, 4/17, we celebrated with over 200 people and with 3 other trisomy 18 friends!! What an incredible day! And Michael, during his speech, reminded everyone of several important things that have happened along the way. When Rebekah's condition at 19 weeks gestational age was confirmed with trisomy 18 through amniocentesis, the first thing we did was pray and give the situation over to God, come what may. On the day of Rebekah's birth, when she had to be bagged several times for failure to breathe and we were being gently pushed to make decisions, our 'decision' on 4/21/09 was that we would keep her alive through the night so that her brothers could meet her in the morning.

But God had a different plan for Rebekah, and instead of carrying out completed funeral plans, Rebekah stabilized and fought for life! She went home from the hospital after one week, and she was really only there for the whole week to establish her feeding (by mouth!) and to get her over some jaundice. We went home and, although she had many episodes of apnea, she continued to eat well and grow.

When she was one month old though, her apnea episodes were getting so frequent, that she had hundreds of 'episodes' in one 24 hour period and maxed out her apnea monitor memory at the same time! (By this time, she had also earned the nickname 'Blue Belle' because she was constantly turning blue during these events when she would stop breathing.) We made the decision to check her into the hospital and run whatever tests needed to be run so that we could definitively know the reason for her life-threatening apnea. This began a month-long process of tests, juggling our schedules and four boys at home, and relying on friends for childcare, meals, help, and praying earnestly that her life would serve a greater purpose.

Before the tests even began, we were lectured to by doctors... "You need to sit down and discuss this situation together and come to an agreement on what you are going to do. Your child is going to need to be trached and on a ventilator. Many parents have been down the path you are going down and, knowing now what they didn't know then, would have made different choices..." The gist of the conversations? Your daughter is incompatible with life. Don't make her suffer by putting her through all kinds of tests and procedures, only to put her on a ventilator for the remainder of her short life.

But after one important test, her sleep apnea test, attitudes changed. Her major issue was obstructive apnea, most likely caused by micrognathia (small lower jaw) but a normal size tongue - something that could be addressed with a tracheostomy until her jaw caught up to her body in growth. And because the problem seemed to be all upper-airway related, ventilation should not be needed. And it wasn't! And while it took a good three months for her body to completely adjust to the tracheostomy, we have never filled-up her apnea monitor memory again!

Yes, Rebekah does have some other health issues and physical anomalies, and we see many specialists. But for the most part, there is nothing that stands out as a life-threatening condition and she has grown from her original 4 pounds, six ounces and 19 inches long to her current size of 16 pounds, 10 ounces and 25 inches long! She is happy and stable. Despite her trach, she is learning to vocalize. Despite severe developmental delays, she is learning to roll and prop sit, reach out and grab toys, hold objects, recognize and appropriately react people and familiar surroundings. She watches us attentively, and follows objects with curiosity and interest. She is, as I like to say, redefining 'incompatibility with life'!

And now, she has beaten those horrid statistics of trisomy 18 children - she has made it to her first birthday!

Although Rebekah's care has been decent, my birthday prayer for her is that doctors and medical professionals will now start agressively treating her as a child full of life, not as a child doomed to die at any minute! It was only this week that we finally got her into a local pediatric ENT to evaluate her trach and ears. Previously, her trach was being managed by pediatric surgery, despite our request time and time again for an ENT that would manage infant tracheostomies. We were told there was no one that would manage it (locally) and no reason to go elsewhere. We were pretty much left to rely on the medical equipment provider's Respiratory Therapist for information on how to manage her trach, and told to come back in a year for the trach evaluation.

Do you know what the ENT said to us when we went in for Rebekah's evaluation with him? "I have never heard of Rebekah's case until now. We handle pediatric trachs all the time, and get referrals from pediatric surgery constantly, for much less complicated issues. With Rebekah's medical history/condition, I do not understand why she was never referred to us. She should've been followed up by an ENT since her tracheostomy." Well, I do not understand either!! And it makes me so angry that Rebekah does not always get treatment that is appropriately aggressive and proactive. And I am so happy to have found this doctor because I know he will do his best to help her and not to hold her back. We asked him point-blank - 'are you willing to manage Rebekah's trach?' His ending comment to us was that he is "very happy to manage Rebekah's care." He has scheduled us to come back for a complete ABR next week, and we will be scheduling an OR visit soon to have her sedated for a complete look at her ears and airway system. This is exactly the kind of proactive care that Rebekah deserves!

So, after a year of ups and downs, hospitals visits, undefined illnesses and lots of drama, I am seeing milestones that I never thought would come!!

1. Rebekah's First Birthday;


2. Media coverage that will hopefully open the door so that we can educate more people (especially the medical community) about trisomy 18/13;


3. A medical specialist happy to take on Rebekah's 'complicated' care in a proactive manner!

What a grand birthday it is! Thank you, Lord, for holding us up through it all and being faithful to provide what we need!