My NICU Angels

"On the night you were born, the moon smiled with such wonder, that the stars peeked in to see you, and the night wind whispered 'life will never be the same again.'
Because there had never been anyone like you...ever in the world." -N. Tillman

With tears in my eyes and a boasting heart, I'd like to tell you about a few of my angels.  There is no worthy gift or monetary amount that measures nearly enough to be given to the people who have carried us through the last few months.  So many have reached out and touched us, helped us to feel whole again, but today I'd like to talk about my NICU angels.

These angels of mine took not only Sawyer, but our whole family, under their wings.  They have loved us, supported us, and reassured us.  Each nurse, doctor, and therapist in the NICU has played a special part in our story, whether it be encouraging words, a hug, or a smile, each has touched us in some way.  While I could write a personal anecdote about every single person in the NICU, there are a few people that are near and dear to my heart that took care of Sawyer most often that I'd like to recognize.

"S"  (photo by M Woods)

On the day Sawyer was born, S & C came to my delivery, gave everyone little signs to wear on their badges that said "Team Sawyer."  They called out, "she's SO cute!" as I laid on the operating table and couldn't see her first moments.  These two held my precious world in their hands as they took Ryan with Sawyer to the NICU and I had to stay behind in recovery.  S came to my room and sat with me when the Neonatologist came to give me an update and talk to me about her hands and feet.  S cared for Sawyer in such a passionate way as I can only imagine she would take care of her own children.   

L helped me hold my daughter for the first time and that's a moment I will never, ever forget.  E sat in Sawyer's room with us when the Neo gave us the news about Sawyer's eye not developing and put his hand over ours as we grieved.  T snuggled Sawyer on those sleepless nights and cuddled her just as I would.  K held Sawyer and sang German Christmas carols to her when she was upset or when Sawyer just wanted to be entertained.  C took Sawyer down for her MRI and cried happy tears when the results were positive.

"C"

Sawyer's speech therapist spent so much time with us to help Sawyer safely feed.  She took such care, advocated for her, carefully pushed her, and kept me involved every step of the way.  Sawyer's occupational therapist gently worked with Sawyer's hands, feet, and hips, and taught us infant massage. Every time Ryan massages her feet and legs, Sawyer melts.

(photo by M Woods)

These people shook their fists at the universe with me and asked God "why?" and prayed for no more.  At times when I felt the most broken, they sat in her room with me and listened to my every word.  My fears, my heartache.  They cried with me.  They put a hand over ours and told us we can do this.  When I found myself focusing on the future, the unknowns, and the what-ifs, they reminded me to focus on the here and now.  This precious joy I have.  To find happiness in the midst of the unknown.  They celebrated each milestone and victory with me.  

"K"

And lastly, Dr M.  As a nurse, I've had the chance to observe her bedside manner with many parents prior to our NICU stay.  But now I had the chance to experience it.  What you saw was not only a brilliant doctor, but compassionate person who doesn't rush through, but answers every question and promises to find out when there are things she doesn't know.  She took our desires into consideration when possible so that we felt like we were a part of the team rather than just bystanders.  I can't express how much her meticulous and thoughtful care has meant to our family.

"Dr M" in blue scrubs...not Santa :)

Besides the amazing care and attention everyone gave Sawyer, the nurses in the unit went over and beyond by decorating her room, buying her outfits, making her outfits, making signs to celebrate weight milestones and so much more.  They made us feel so special and I am so grateful.

Birthday surprises!

Ryan and I were struck with unimaginable news the day Sawyer was born and will never be the same.  We have been stretched and pulled in all directions, but we have found a love that runs deeper than pain and it continues to grow stronger each day.  While this NICU roller coaster has uncoupled me numerous times, these NICU angels have helped me get by through their love and compassion for my daughter.

(photo by M Woods)

I would never wish a NICU visit on any family, but if it's in your cards, I work with some amazing, wonderful people that will take excellent care of you.

K discharging us from the NICU

To everyone in the NICU, we love you and could not have done this without you.  Thank you for the check-ins, the phone calls, the notes, the handmade gifts.  Thank you for your contribution to this journey and helping to get my little girl home to me.

Night she came home.

love,
Team Sawyer

Home, sweet home!

My goodness, y'all.  I don't even know where to start.  But yes, I do.  After 51 long days in the NICU, Sawyer is HOME!  Our sweet, sweet girl was discharged last Thursday from the NICU after an unbelievable turnaround with her feedings and we. are. thrilled!

Let's rewind a little and I'll explain how it all went down.  About two weeks ago, I still wasn't feeling comfortable with Sawyer's bottle feedings.  She would develop rattles that you could hear and feel in the back of her chest and would have hard, deep swallows that just sounded like she was overwhelmed.  These sounds made me so nervous and I'm sure I sounded like a crazy person because I would bring up the topic to anyone that would listen.  A swallow study had been in the works 2 weeks in a row, but each time had been canceled because she seemed to continue to make improvements with her coordination.  Finally, there was talk of us just taking Sawyer home with a feeding tube and letting her continue to grow and mature and work on feedings from home.  Home health was ordered for us and I had surrendered myself to this fate, however, I asked again for a swallow study.  I wouldn't feel comfortable taking Sawyer home making these noises during her feeds without knowing exactly what was going on with her mechanism of swallow.  The speech therapist had been out of town for a week, but when she returned, she evaluated Sawyer and agreed that a swallow study needed to happen and we should hold off on so many PO attempts.  We held off for the entire weekend and Sawyer's swallow study and upper GI (to evaluate reflux) was scheduled for the following Monday at 3pm.

Results: trace aspiration with thin liquids and severe reflux.  Not to say I was happy with this, but I knew something wasn't right about the way she was feeding.  But there is good news, with thickened liquid, she could eat safely.  So here's what we did for feeding safety and max reflux management: completely took breast milk out of her concoction and thickened the Enfamil AR with rice cereal to make it more of a honey consistency and upped her dose of prilosec. 

On Tuesday, speech was able to feed her 37mL easily and we made her feeding order attempt to bottle when awake and allow her to take up to 30mL.  Wednesday morning, speech was able to feed her the entire volume (50mL) with no rattles and no hard swallows!  Ryan and I each fed her that day and both could not believe this was our baby.  Not only would she take the whole volume, but she took it in 10 minutes with hardly any pacing.  You could actually feed her like a regular baby!  To say I was amazed is an understatement.  I could never have imagined this kind of turnaround.

Thursday morning, her feeding tube came out.  She was taking her full volume by bottle and not only was she eating well, but her color was better.  She was pink and looked rested!  Her occupational therapist even commented that she was relaxing her legs more and hips weren't so tight (which by the way, she had a hip ultrasound and they are normal.) 

Ryan and I were cautiously optimistic that we might be able to take Sawyer home by Saturday. We were just hoping and praying that she would continue to eat well.  I definitely never imagined Dr M would walk in that Thursday afternoon and say "well, when do you want to take her home?"  I laughed and said "as soon as you'll let me," and she said, "today?"  Picture: jaw dropping to floor.  I was shocked.  Then immediately remembered Ryan was working that day and definitely wouldn't want to miss her homecoming.  I told her this and said I guess we would wait to bring her home on Friday.  Then I came to my senses, said "what was I thinking?!? We'll take her today!!"  Then called Ryan and told him he needed to leave work because SAWYER COULD COME HOME!  

Within 5 hours, she had passed her car seat study (1 1/2 hours in the car seat while on the monitor to make sure she was safe), we had packed up all her clothes and signs, completed discharge teaching, and were walking out the door.  Even as we were driving away, we couldn't believe what was happening.  Not going to lie, there was a slight moment of panic when I realized we were taking home a baby that had just started eating within the last 2 days, but I snapped out of that quickly as we pulled into the driveway.

First thing I did...turned on the Christmas tree and let her see the lights.  And I'm happy to report that she loves the Christmas tree.  Her first night at home was a little nerve-racking---how was I supposed to know if she was breathing if I slept?!  I missed her monitors.  We made it through the night though relatively smoothly and with some sleep.  Now 4 nights later, we have a routine and are getting into a groove.  She is such a good baby and life is all the more sweeter with her home.

We went to her first pediatrician appointment yesterday and she gained weight!  Her discharge weight was 5 lbs 7 oz on Thursday and now she was 5 lbs 12.5 oz!!  This is a big deal and so exciting!  

A home health speech and occupational therapist will be coming to evaluate her on Monday, scheduled a pediatric ophthalmologist appointment for February, as well as an appointment with a pediatric orthopedic specialist.  I'm feeling semi-organized.  

Again and again, THANK YOU for all your prayers.  And thank you to the amazing NICU staff that has cared for and loved my daughter for the past 7 weeks.  We love and appreciate you all.

love,

Team Sawyer

Six Weeks

Yesterday was bittersweet.  It was Sawyer's due date (and my birthday) .  I told myself at the beginning what I tell every NICU parent, "Expect to be here until your due date, sometimes you get to go home sooner, sometimes it takes longer."  Six weeks in the NICU and we're still here.  We anticipated a NICU stay from early on, knowing that Sawyer would likely never meet the weight requirement that excused you from automatic admission to the NICU, but hoped that our visit would be short and sweet and based on growth.  I prayed that we would not have issues with feeding or apnea, but once again, difficulties do not elude us.  I desperately want her home, but I also don't want to rush anything and cause setbacks.  I feel like I'm toeing a fine line between being a mother and being a NICU nurse.  In some ways, I'm thankful that I know as much as I do and can assess Sawyer and help contribute to her plan of care because of that.  On the other hand, sometimes I just want to turn off my mind and enjoy things without constantly analyzing heart rates, respiratory rates, and noises.  I'm not being paid to be a nurse right now, but I feel like I go to work each day.

Sawyer isn't quite coordinated with the "suck, swallow, breathe" necessity that comes with bottle feeding, putting her at higher risk for aspiration.  I usually pride myself on being able to feed some of the most difficult babies.  And I mean "difficult" in the sense of requiring absurdly strict pacing, certain positions, exact tipping of bottle, etc.  But goodness, feeding my own child scares me.  Sawyer's speech therapist has been working tirelessly with me and Sawyer, coaching me, and doing anything and everything to make sure Sawyer can feed safely.  Yesterday the order changed to where she's now allowed to try to bottle feed every 3 hours as much as she'll take of her total volume (48mL) and gavage the rest through her feeding tube, so we'll see how she does with that.  She's made leaps and bounds in terms of feeding quality in the last week and hopefully will continue to do so.  This part takes patience.

As we continue on this diagnostic path, I've been crossing the scary things off my list.

• Genetics---in progress.  One part came back saying Negative for sequence variance of the TP63 gene, but deletion and duplication tests are still being run.  Um, what?  Know a geneticist? Please send them my way. Thanks. 
• Hearing screen ---done and passed!
• Eye exams---done with these until discharge! From here, we'll follow up with a specialist.
• Hip ultrasound---Sawyer has tight hips, probably from being in the frank breech position for weeks.  Occupational therapy has been doing stretches with her, but recommended a hip ultrasound.  Happening this week.
• MRI---see comments below.

Saturday was the much anticipated, yet dreaded MRI.  The MRI checks for abnormalities of the brain, such as areas affected by injury, lack of development, lesions, etc.  The doctors ordered one for a number if different reasons.  First, with all the "surprises" we've had, probably best to make sure her brain is okay.  Second, she has slight facial asymmetry and when you think about how her right side developed---right eye coloboma, right pelvic kidney, etc, there was a chance the right side of her brain could also have been affected.  Third,  orbital cysts are often present with fundus colobomas so the retinal specialist had recommended her to have one.

Not going to lie, I was terrified.  I hate to be all doom and gloom, but I figured if there was a possibility of something being abnormal, then it would happen to us.  Waiting while she went down to radiology for her MRI and waiting for the results, I feel like is a little glimpse into what the future holds for us.  And that's hard.  Waiting was hard.  But with that comes some good news, finally.  The radiologist reported everything looked normal.  Hallelujah!  Normal has not been in the vocabulary for this pregnancy or for Sawyer, so this is beyond exciting!

Just a few other updates...Sawyer has reflux so we started Prilosec to help with discomfort and it seems to be helping.  We've also been watching Sawyer's blood counts because she was anemic, so a medicine called Epogen was started to stimulate red blood cell production.  After this week's counts, it also seems to be working-yay!

Days aren't necessarily getting any easier, but Ryan and I are getting into a groove and just learning to accept each day as it comes.  I feel overwhelmed with thinking about insurance, about returning to work, about making appointments, choosing specialists, and getting everything done right and in a timely manner.   Not to mention, one of our dogs, Nelly, has decided now is the perfect time to have incontinence issues.  Anyone want a 90lb bed-peeing Weimaraner?  I think this is her way of dealing with stress.  Oy.  One day at a time and again, Sawyer is the best remedy.

Weeks ago, the social worker had suggested that I do something that made me happy, and considering the Christmas season is my absolute favorite time of the year, we decorated early.  Our Christmas tree and decorations went up the week after I was discharged from the hospital, so roughly the first week of November.  I can't wait to share my love and excitement of the season with Sawyer.  Last week it was feeding tube change day, meaning the old tube was coming out and a new one would be put in, so a for a little while, her face would be unobstructed by tape and tube.  Therefore, the nurses helped me take some Christmas pictures!  I brought up some blankets for a backdrop, some bows, a Christmas outfit, and her stocking.  Now these make my heart SO happy.

And I've decided she looks a lot like her father. :)

Again, thank you for your continued thoughts and prayers.  We are feeling them and we are grateful.

love,
Team Sawyer

Thankful

Sweet friends and family,

Thank you, thank you, thank you from the bottom of our hearts.  We have been overwhelmed by the outpouring of love and support from you guys.  Your messages, e-mails, texts and comments have been read over and over again and continue to lift us up.

We cannot even begin to fully understand the purpose that God has in all of this, but I trust He has great things planned for our family.  As many of you have said, Ryan and I were chosen for this.  Made for this.  In some ways, prepared for this.  And we CAN do this.  I may have to remind myself of that each and every morning (and multiple times throughout the day), but that's okay.  One friend said, "I cannot wait to see how [her son] and Sawyer change the world," and I can't either.

In the midst of all the chaos,  it's easy to forget to give thanks.  And so in the spirit of the season, here are just a few things I am thankful for...

Reaching 4 pounds this week!!  We are growing slowly, but we are growing.  Also, she is now in an open crib and is maintaining her temperature!

Passing our hearing screen!  This is a HUGE deal.  Doctors prepared us that deafness is an associated finding with her condition.  While we were optimistic since we noticed that she startled to noises and responded to our voices, it's still reassuring to have passed the test.

Sweet nurses, who are also my good friends, caring for and loving on my little girl when I'm not there.  The NICU life is hard, but they make it bearable for me.  They also make cute hats and outfits for this fancy girl!

Random acts of kindness.  For instance, a plastic surgeon was at a meeting where Sawyer's case was presented by her primary doctor.   Afterward, he asked her if he could stop by the NICU and talk to us.  We thought he was wanting to come for a consult, but had really just wanted to reach out to us and personally give us a referral for a pediatric hand surgeon that he knew and thought was wonderful.  He sat down and before he even mentioned anything about her hands and feet, he talked about what a blessing she was and while he knew we were overwhelmed and stressed, not to forget to take the time to celebrate her birth.  He told us not to think of her having hand and foot "deformities" but rather "differences."  It's hard to explain, but something about his visit really touched us.  Sawyer just keeps inspiring more and more people to join her team.

My sister, Brandy.  She so graciously started a GoFundMe page for Sawyer.  Many of you have asked in what ways you can help or contribute to Sawyer's care.  While your thoughts and prayers are more than enough, this is another way to help but please do not feel obligated.

My mom.  She is essential to this journey.  From constant prayers, to helping me review insurance claims, to cooking us meals to make sure I eat, to loving on Sawyer, to loving on me.  She's wonderful.

My husband.  I struggle to find the words to describe just how amazing this man is.  We have had so many ups and downs throughout my entire pregnancy and now as we try to navigate these unfamiliar waters, he has been so strong.  He has held my hand through it all and I don't know what I would do without him.  Didn't know I could love him anymore, but every time he holds Sawyer and bonds with our girl---melts my heart.

Sawyer.  Oh how I love this girl.  She lifts our spirits every single day.  And those cheeks!  I can't get enough of her and I cannot wait until she is home and I can snuggle her all day long.

And again, we are so thankful for you and your encouragement.  We are blessed to have each of you in our lives.  

Happy Thanksgiving.

love,
Team Sawyer

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