To our team

Sweet friends and family,

Sawyer has now been in the NICU for 24 days.  She is nearing the 4 lb mark, weaned all the way down in her isolette where she's not receiving much help with maintaining her temperature, and working on bottle and breastfeeding attempts.  She's strong and she's working so hard.  This family is truly being carried by your continuous prayers, thoughts, and hugs.  We are so grateful.

There are a few things we have waited to share openly with everyone until we had more information and honestly because it's just plain hard for us to talk about.  For a little background, during my pregnancy at the 20 week anatomy ultrasound, the doctor found some "soft markers" giving him cause for concern and recommended that we have an amniocentesis done to test for chromosomal anomalies.  She was measuring 2 weeks behind in growth (3rd percentile), her right kidney had not ascended properly and was located in the pelvic region, and both kidneys were slightly dilated.  The doctor explained that often these markers are seen with one of the trisomies, potentially one that would be incompatible with life.  In another post I'll go over the overwhelming emotions and trauma of that day, but we ended up doing any and all testing available to us so that we would be prepared.  We received genetic counseling, nothing exciting in our family lines, and completed the FISH test, karyotype, microarray, and viral cultures on the amniotic fluid.  All tests came back completely normal.  Perhaps she was just small or it was due to a placental issue.  I was referred to the Maternal Fetal Medicine Specialists for the remainder of my pregnancy to monitor growth and fetal well-being.  From weeks 22-34, I saw Dr D once, twice, then three times a week before I was admitted to antepartum for 2 weeks.  During this time, I had a total of 34 ultrasounds.  34!!  Most pregnancies have 4-5, if that.  

At week 28, Dr D mentioned Sawyer's left foot may have been affected by amniotic bands and that there may be some fusing between the toes and a slight crease/indention of the foot.  We pored through our previous ultrasound pictures because how had we not seen this before? Each week, they continued to check hands and feet but mainly focused on that left foot.  At week 32, Dr D said once again, she thought there was some fusion but not to worry because they could surgically separate those fused toes.  Without going into too much detail (again another post), Ryan and I were not at all prepared for the severity of the hand and feet malformations Sawyer was born with.  

We are still awaiting the genetic testing results, but doctors are speculating Sawyer's condition is called split hand and foot malformation or ectrodactyly.  Her left foot only has three bones with two fused toes and a deep cleft in the middle of her foot.  Her right foot has four bones, three full toes, and one bone nubbin' (not a medical term, but that really is the best way to describe it).  Her right hand has all five bones and fingers, however, the first three are fused and fingers 4-5  are fused with a small cleft.  Her left hand has all five fingers and digits 3-4 are fused.  

We are overwhelmed.  We are heartbroken.  We are devastated for what this means for our little girl.  Ryan and I were definitely shocked, confused, and sad the first week.  After all,  this condition is so unbelievably rare and usually an autosomal dominant inheritance, meaning someone in our family would have been affected at some point. But then we got to work.  Researching, asking questions.  And we are hopeful.  While nothing will ever look completely "normal",  we have already spoken to one pediatric orthopedic surgeon who was optimistic about full functionality of her hands and in his words, "her feet are completely shoe-able.  She'll be able to walk, no problem."  That's all we know.  We don't know how many surgeries she'll need, when she'll have them, or where she'll have them, but likely they will begin around six to nine months.  

A week into our NICU stay when Sawyer started opening her eyes more, I noticed her right iris seemed smaller than the left.  After requesting an eye exam to be done by our retinal specialist, we learned that Sawyer's right eye didn't fully develop in utero, called a coloboma.  It affects her iris all the way back to the retina.  We don't know to what extent, but we do know that Sawyer will have severe visual impairment in that eye.  Her right eye is also slight smaller than the left (microphthalmia).  Again, all of this is still new to us.  What we know: pediatric ophthalmologist and baby glasses are in the near future.

Our world has been rocked, our hearts shattered over and over again, our faith tried and we still have many unknowns that will likely overwhelm us as well.  The number of tears I've shed over this girl already...
Amazingly enough though, Sawyer continues to piece us back together.  We will love her, adore her, find her the very best doctors, surgeons, and therapists to take care of her.   

My older sister shared this blog post with me about parents who unexpectedly had a child with Treacher Collins Syndrome and wrote to other mothers dealing with similar things.  While Sawyer doesn’t have this syndrome, she will have a similar journey of surgeries and hospital stays and physical differences.  This post gives me strength.  We are not alone.  When I start to feel defeated and overwhelmed, I read it.  Specifically this part...

"You’ll learn to become a fighter. For her needs and then for other’s needs. While at first you will ask your mom, God and anyone close to you… “Why was I chosen for this?” You will wake up one day and realize it’s because you have the fight in you. You’ll champion your child and others. You will pay it forward and feel more complete than ever before. You will write this note to someone else in two years’ time.”

We have a long road ahead of us, starting first and most importantly with growing this little peanut so she can come home with us from the NICU.  We ask for your prayers, your understanding, your compassion.  Sawyer is so beautiful, but we live in a cruel world where often differences cause people to recoil or turn away.  If you have any questions, please ask.  Meet her, love her, I know she will change your heart. 

love, 

Team Sawyer