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