Putting On My Battle Gear

Rebekah has been sick for well over 11 days now. We went to the pediatrician's office two Saturdays ago to get her checked out. She had upper respiratory illness (URI) symptoms like slightly discolored and thickened mucous, deep cough needed to work the mucous out of her lungs, low grade fever. In the past, we would test for all kinds of URI things (RSV, chest x-ray for pneumonia, MRSA, etc) with negative results and all of her symptoms led to, believe it or not, a urinary tract infection (UTI)!

So she sees this new doctor that Saturday who actually listens to me, but in the process does nothing but cath her to check for a UTI. The results after a 48 hour culture were still negative. So all week we have done nothing but 'manage' it at home with breathing treatments, lots of suctioning, and some extra love.

Smiling for the camera despite not feeling 100%!

Then, last week on Thursday night, she threw up and aspirated (it went right into her trach opening and scared me to death!). Called the doctor Friday morning to request a 'preventative antibiotic', since her risk of pneumonia due to aspiration is high. They said no to the antibiotic.  In treating her like a 'normal' child, they will not prescribe antibito  Good news is, she hasn't gotten worse. Bad news, she's not better either.

Why do I feel that going to any doctor appointment with her is like pulling out the battle gear and putting it on? It feels heavy and oppressive! I am the mom, why do I let these doctors intimidate me and not speak my mind? Why do I accept their answers even though I am questioning inside?  It's kind of funny because I want them to see her / treat her as a 'normal' child...but when she is sick, I want them to remember she is fragile and needs special consideration. Why can't I have it both ways? 

Such is life with our little Rebekah!  Guess it would be too boring any other way...

A Month To Celebrate!

Delight yourself in the LORD and he will give you the desires of your heart. -Psalm 37:4

This is a fabulous celebratory month for Rebekah!  I needed to share all of these milestones before I forget them!

I pray that this information about Rebekah continues to bring others closer to God, provides hope for those facing the painful road of carrying a trisomy 18 child, and makes those in the medical community question the text books and outdated/skewed statistics about children labeled 'incompatible with life' before they are even born to this world.

Medical/Health-Related Milestones

• 10/21/10 - Rebekah is 18 months old!! Hurray!!
• It has been a little over a year since Rebekah has been admitted to the hospital for an illness! She did get RSV last February, but we managed her care AT HOME. Since then, she has had a few other illnesses, but is getting better and better at fighting them off and recovering quickly. None of them required hospitalization overnight!
• She is becoming more and more stable. Even when she gets a cold, we are only minimally needing oxygen supplements for her.
• Despite her trach and diagnosis of being likely to aspirate, she has NEVER had pneumonia! Also, despite her trach and the advice not to orally feed her, we have been successful at giving therapeutic amounts of food with no signs of aspiration!  In 2011, we will be working on trying to get these feeds up to an amount that will decrease what she received by her g-tube.
• She has been cleared by the cardiologist and only needs annual checkups. The nephrologist has cleared her from the concern of chronic hypertension. She has no pulmonary hypertension and, despite her horseshoe kidney anatomy, her kidneys seem to be functioning properly and doing their job well. Despite her neurological issues, we are still blessed with no seizure activity. Her health is pretty amazing given all of her anomalies.

Developmental Milestones

• Rebekah is rolling from her stomach to back, and back to either side! We think she can roll all the way to her tummy, but she HATES being on her tummy. Just seeing her roll side-to-side is quite an improvement in her mobility! It allows her to scoot around and rotate her body when lying on the floor.
• She is now weight-bearing on her legs!
• She is giving open-mouth baby kisses!
• She plays peekaboo with her eyes by squiting them shut then peeking out behind those long beautiful lashes. She doesn't use her hands much, so we will take the handless form of peekaboo!
• She can sit for about a minute before falling over. She does not have the reflexes to catch herself, which means sitting requires much more balance. We are diligently working on her arm and hands weight-bearing and hoping to see her more actively catch herself in the near future, which will lead to longer and more consistent sitting ability.
• She is developing a sense of humor and finds it amusing to push things off her tray and watch everyone retrieve stuff for her!
• She is developing clear likes and dislikes, showing her opinion, and clearly demonstrating people preferences and stranger anxiety. She is developing a lovely toddler attitude!
• She definitely focuses on people and things she is interested in. She will watch her favorite videos over and over with much intensity.

Other Celebrations

• We have had nursing care for Rebekah for one year now! I attribute her health and development to this!!  Having her Nurse Becky here for her 5 days a week keeps her healthier and gives her a lot more therapy time than I could ever manage on my own with all of our boys!
• When we were expecting Rebekah, we made funeral plans before she was even born. Those plans have been long forgotten, and we actually just went through the process of redoing our wills to plan a future for Rebekah including a trust fund that would protect her from any income and asset assessment that might cause her to lose her Medicaid Tefra benefits. The process of moving from a 'death' to a 'life' view has been amazing.
• Rebekah continues to be a blessing to many and a constant reminder to us that miracles do still happen!   We thank God everyday for the honor of caring for her.
  

While Trisomy 18 may be a diagnosis, it is NOT a prognosis. Each of these children, created like us in the image of God, deserve a chance to love and be loved. Their purpose here on earth is not to become rich and famous, it is to teach us about humanity, compassion, and grace.

This video demonstrates how Rebekah (17 months) interacts with her brother, receiving and giving affection. We captured some of her first 'kisses' in this video - enjoy!

In this video, Rebekah (17 months old) is just starting to initiate weight-bearing on her legs. It kind of surprised us how this behavior all of a sudden emerged. We are in the process of reviewing standers for her and hope to order one soon so she can keep working on this skill!

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.