What a sweet Valentine's Day it will be!

Everly’s first five weeks of life provided us with a crazy mix of excitement, grief, and anxiety.  This past weekend she showed us that she is every bit as strong-willed as her parents when on Friday she simply decided she was simply done with all her tubes.  Her body having built up tolerance and making her sedative and paralytic drugs much less effective, she became very frustrated trying to cry, clamping down in her throat on her ventilator and preventing it working properly.  By Saturday she was trying to pull it out herself, so to keep it at least a controlled extubation, a neonatologist removed the ventilator Saturday night and though  sore and raspy, she immediately started breathing and crying on her own.  On Sunday, the sutured threads were also removed from her tongue as it was determined that she was no longer at much risk for suffocation.  By Monday they also removed the picc line, and by Tuesday, her feeding tube was removed.  Once her monitor leads are removed, she will for the first time in her life, be free at last!

Based on her sugeon’s experience with jaw distraction and tongue surgery, he had advised that we prepare to be in the NICU for yet another one to two months post-op.  We also talked with another family who had the same surgery done here a couple years ago, and were disappointed to hear them confirm the anticipated extended stay based on their experience.  They’d run into the same feeding struggle as is seen with all Pierre Robin babies post-op, that because the tongue has been moved, it takes a great deal of time for a baby to coordinate swallowing along with how to use all of their newly-relocated tongue muscles.  And of course that effort is further complicated by having the steel distraction bar running through the bottom of the mouth.  In addition to the challenges of a new tongue and jaw, Everly was presented with the additional struggle of not being able to create any suction due to still having a full cleft.   So after being given the all-clear on Monday to begin the long journey of learning to eat, I filled up her special-needs Haberman bottle with hopes that she might be able to choke down just a few CC’s. 

That’s when the seeming miracle occurred.  Evie immediately started attacking the bottle, vigorously swallowing back the milk with perfect coordination.  I stopped her for a burp break and she screamed until I returned the bottle to her mouth.  Brad and I with mouths agape, watched as Everly finished every last bit of the 70 CC’s filled in the bottle.  Since she continued to eat well over the following day, we inquired about her next steps to her surgeon Dr. Matthews on his Tuesday visit.  His response nearly put us to tears: “Well, as I mentioned after surgery, I was pleasantly surprised by her dense bone structure which is unseen in an infant this young and has tremendously helped this distraction.  And to have a baby eat so well immediately after surgery is rather remarkable. Do you feel comfortable taking her home?”

And so it is, that we will be taking this ambitious little gal home tomorrow after 37 days in the NICU. She will still have the steel screws in her face until early March, to allow the newly extended lower mandible bone to harden.  She’ll also need to have another major surgery to have her cleft repaired and tubes put in her ears late this year. But today, with endless repetition we’ve commented how this seems to be too good to be true that we will be freed from the hospital nearly two months earlier than expected!!!  We will never know if her phenomenal outcome is due to her God-designed genes or the prayers of so many people, but I tend to think it’s a little bit of both.  And so, we thank everyone for the prayers and love so abundantly given to us. 

Everly will have a follow-up appointment with the surgeon next week in his office and then another appointment again early March when he returns from his upcoming trip abroad.  Which brings me to a unabashed plug:  Dr. Matthews is leaving on February 20^th to go to Jordan, where he will operate on children with severe craniofacial disfigurements.  As Jordan has some of the best healthcare in the Middle East, doctors from all over the region will be in Jordan to train under the tutelage of Dr. Matthews.  These doctors will then return to their home countries where they’ll hopefully be better equipped to help change the life trajectory of children with craniofacial disfigurements.  This cause is of great interest to our family, most obviously because we cannot imagine the pain of parents whose children are born with such birth defects and cannot find or afford the help needed for their children.  We now see the work of organizations like his, to be one of the most effective ways to show love to the Islamic world.  Helping suffering children and their hurting parents seems like a simple way to put our money where our Christian mouths are, for the Muslim world. 

 

Due to federal regulations, the foundation cannot receive any donations from companies and must rely solely on individual giving to provide surgeries and training in the Jordan.  Over the past month, many wonderful friends and family have asked us what, if anything, they could do to help.  Our answer is to shamelessly but humbly ask for anyone who feels inclined, to help the Craniofacial Children Foundation.   Because the 501-C organization is relatively new and time-constrained, they do not yet have a website for online giving. However, anyone else who would like to help in this cause can simply send a check to:

Craniofacial Children Foundation
C/O David Matthews
1719 South Blvd
Suite B
Charlotte NC 28203

P: 704-375-2955

Things we're looking forward to:

 

• Getting away from screaming monitors all over the NICU all day, every day!
• Removing Everly's constrictive monitors and taking her more than two feet from her bed!
• Taking Everly on her first car ride and letting her have her first view of the world outside the hospital!
• Sitting on the couch, instead of sticky vinyl chairs!
• Not having to spend three minutes scrubbing our chapped hands every time we want to see our daughter!
• Being able to start our life as a family!

Last day on a ventilator (and looking muuuch better than the previous week)



Last day with this annoying feeding tube!

Only one more day until I get out from behind bars!

 

 

 

Taking my car seat test so I can go home!