Wednesday, November 9, 2011

up to now.

Thank you to everyone who has journeyed along with us! My hope and prayer is that this blog would be a tool to keep everyone updated on our little girl and to let you in on what “Normal” looks like in the Beckman family :) God has been so good to us! He’s spoken sweet words of grace, comfort, peace and direction in what might be deemed as a shattering circumstance in the worlds eyes. Although one may ask of the reasons why God would allow something like this to happen, all I can say is that its not for me to understand or figure out. Deuteronomy 29:29 says “The secret things belong unto the Lord our God: but those things which are revealed belong unto  us and to our children forever, that we may do all the words of the law.” It’s for me to trust in Him and be the best parent to Esther as I can be. She was given to the Beckman family ‘For such a time as this’ so please sit tight, grab a cup of coffee, for this is where her story begins… 

Day 2
First family photo
February 23, 2011… Esther Lillianna Mae Beckman was placed into our family. She weighted 4 lbs 10 oz and measured 18 1/2 inches long. She was born with an extremely rare syndrome called Cerebro Costo Mandibular Syndrome (CCMS), so rare in fact that there has only been 75 cases ever documented. She was born with a small/underdeveloped jaw, which pushed her tongue back into her airway, making her unable to breath on her own. She also has what looks like “cracked/broken” ribs. Its called ‘floating ribs’ or ‘rib-gap-defect’, where her ribs didn’t form correctly. Some are missing and most are not attached to her spine. The doctors tried to intubate her 14 times in the first minutes of her life..... finally with success. She was then life flighted the next morning to OHSU NICU where we spent the next 7 weeks experiencing what it feels like to be parents for the first time, but more importantly, walking into a whole new season of life where ‘walking by faith’ took a whole new meaning...
First time holding Esther
First time holding Esther

Within these weeks, we met every doctor at OHSU. Literally. If you have ever been to OHSU, you know exactly what I mean. Everyday, a team of doctors, medical students, and people with name tags all congregated to discuss Esther’s condition.  A doctor pointedly said “we can keep anyone alive, that’s our job, but you really need to think about what you want to do for the quality of her and your life” Wow! I’m so glad that Jesus didn’t say that when He died on the cross for us… He knew what “quality” really meant by giving everything to see his children saved. 
Jaw Distraction

So our first quest to saving our little girl was to address her breathing. She was intubated at this point and either needed a tracheostomy placed or a jaw distraction. We did both. A jaw distraction is much like it sounds, they distract the jaw by breaking the jaw bone and placing rods in between the break, allowing new bone to grow by distracting it 2 mm a day, as this is the rate in which it calcifies, forming new bone. We opted for the jaw distraction first since this could allow up to 25 mm of distraction to happen in this one surgery AND not to mention her ability to talk, eat, and breath on her own. A tracheostomy is a small breathing tube placed directly in her trachea. With this surgery, she would not be able to talk or make noise because the trach is placed below the vocal box, not allowing air to be pushed past her vocal cords. A much higher level of care is required with trach patients. Such as suctioning - where a catheter is used directly into the trach about 5 cm and removes all the junk in her throat, which we usually swallow or blow out our noses. Humidity 24/7, oxygen monitoring, and all around precaution to her open airway (dust, etc). After 10 days of distracting, we had to stop because we were noticing that her rods were protruding into her cheek area. Technology these days blows my mind. The rods that they placed in are actually made of sugar. Interesting isn’t it! Sugar that dissolves over a period of a year and a half. I have always thought that raising a child in this day and age would be really hard, due to all the craziness this world can bring, but God is All-Knowing and knew that if Esther wasn’t born in the generation, she wouldn’t have been able to make it this far. For this alone, I am absolutely convinced that her purpose is in the very hands of the One who created her, for such a time as this.
Tracheostomy day, March 17th 2011. A day for us when vision began to move past hospital beds and Ronald McDonald houses and started knocking on the door steps of our own hearts.. Life outside of a hospital bed? Was it really going to happen? Are we able to take her out of here? Is that even legal? Are we equipped to take care of her? Do I know how to suction her? Change her trach ties? Monitor her oxygen levels? I thought I was suppose to learn how to change diapers and how to match cute pink and white outfits together? Oh Lord.... Can I do this?

Look at that face!
Well as I am writing this to you today, its November 9th 2011 and our daughter is over 8 months old already! The Lord has not only sustained us - but has absolutely poured out the storehouses of heaven on us! She is thriving! In the average growth rate she was born well below the charts, and now is in the 80% percentile, weight almost 18 lbs! She just sat up for the fist time 3 days ago... she is active, smiley and a light to everyone around her in every way.  I know this is a brief backdrop for you but please stayed tuned as there is and will be much more coming!