6 months! 7 months! 8 months!

I decided to group a few updates together so forgive me for it being so long.  I not only write these for you, but also as a way for me to remember everything, so it doesn't hurt my feelings if you don't read through it all. :)

Let's get started!

At 6 Months!

Sawyer went to the pediatrician and weighed in at 11 lbs 9 oz!  We jumped from the 1st percentile to the 2nd percentile on the growth curve---hooray!  According to the little 6 month milestone checklist that we filled out before our appointment, Sawyer was meeting each milestone right on track.  We hadn't necessarily mastered every single skill, but we were definitely attempting and doing each one.  Up until now we had been seeing our occupational therapists twice a week and speech therapist once a week and I was curious about whether or not Sawyer really needed therapy that often if she was proving not to be too far behind the average 6 month old.  So I asked our pediatrician to give us her honest opinion on how she thought Sawyer was doing.  Her thoughts? Sawyer looked amazing! She was performing about average for a 6 month old despite her rough start and NICU stay.  She didn't think Sawyer needed therapy so often and she suggested reducing OT to once a week and stopping speech therapy.  

While most parents start introducing solids between 4-6 months of age, our therapists had wanted Sawyer completely sitting unassisted for at least 90 seconds before starting them.  Our pediatrician didn't necessarily think she needed to be doing that, but did recommend us holding off until 7 months due to her feeding issues the first 7 weeks when she was in the NICU. Fine by me.  A few days later, she started sitting up for long periods of time, no problem.

Feeding-wise, she's mostly taking straight Enfamil AR.  I throw in a bottle of EBM here and there and it obviously exacerbates her reflux so at this point, I'm not pushing it.  She's growing, she's healthy, that's what really matters.

6 Month Likes:

• Being outside---walking, sitting, riding in the stroller
• Sleeping in her crib for naps AND bedtime
• Chewing on EVERYTHING
• Patty-cake and Itsy Bitsy Spider

Dislikes:

• Tummy time....I thought once she could roll there herself she'd like it, but nope.  She rolls there, realizes her epic mistake, and rolls right back.

At 7 Months!

Her little personality is just shining!! My favorite, favorite thing is when she wakes up in the morning or after a nap and you go and peak over the side and she sees you and starts giggling and kicking her feet and just seems so happy.  She laughs hysterically at the silliest things and I can't get enough. 

We are down to one therapy session a week and she is still doing so, so well.  We now have a little more flexibility to our schedules and that has been really nice.  We did, however, add another member to the Team.  I had been doing research on chiropractic care for infants and was really interested in it and what it had to offer.  I talked to quite a few parents who had positive experiences and decided to give it a shot.  Ryan and I took Sawyer to a Holistic Health Chiropractor (who also happens to be a relative) and had the best experience.  It's not your bone popping chiropractic care---he has been focusing on calming her sympathetic nervous system and mind which in turn has helped her lateral head tilt and her reflux.

We've started adding in solids! Originally I wanted to do the Baby Led Weaning approach which skips purees and gives the infant soft, solid foods that they can feed themselves.  Because Sawyer will have a surgery on both hands soon and not able to feed herself, I decided to do a mix of spoon feeding purees and whole foods so she will be familiar with both! Weight-wise she's a little over 12 lbs, but don't know the exact weight. 

7 Month Likes:

• Sitting up like a big girl and playing
• Laughing at reflection in mirror
• Trying new foods---favorites: butternut squash with cinnamon and pears
• Still chewing on everything
• Standing (not pulling herself up, you have to stand her up and she holds on)
• Taking baths in the BIG bathtub
• Rolling back and forth
• Visiting cousins in California

Dislikes:

• Mom and Dad eating things in front of her that she can't have yet...oops.
• Sitting still on plane

At 8 Months!

Sawyer is 13 lbs and her first tooth is coming through!!! It's about time because I feel like she has been teething for months.  She's also getting so close to crawling which breaks my heart because in two weeks we're going to put casts on her arms and completely throw off her groove.  Same with feeding---she prefers feeding herself and digs whole foods more than purees, so the four weeks after her surgery may be a little frustrating.  Now that she is rolling nonstop, tummy time is no biggie.  I feel like overnight she realized it's cool to play on her tummy and I'm already forgetting the days that she hated it with all the passion in the world.

8 Month Likes:

• Rolling anywhere and everywhere
• Eating--sweet potato fries and puffs
• Napping on stomach
• Drinking water out of a straw cup
• Swimming!

Dislikes:

• Not getting to try ALL the foods ALL at once 

Alright now for the surgical update.  I'm including a picture with labeled bones of the hand, so what I'm saying makes a little more sense. :)

 

We're two weeks away from her first surgery, so Monday we took Sawyer to Houston for her official "Pre-op" appointment with the surgeon.  I am confident still that we have chosen the best surgeon for her.  Even with a waiting room full of people and it being 6:30 pm, he did not rush through the appointment, took time to answer all of my questions thoroughly, and again, so sweet with Sawyer.  We found out that her surgery will be considered an outpatient day surgery so she likely will not have to spend the night in the hospital!  As long as her vitals are stable and she's able to keep milk down following the surgery, he said recovery/post-op is generally 2-3 hours.  He did prefer us to stay in Houston another night rather than drive back right away in case any complications arise, but he thought it was less stressful for children if they were able to go home rather than spend the night in the hospital. 

He anticipated the surgery will take around 4 hours.  On her left hand, he will be separating the 3rd and 4th digit which is considered a complex complete syndactyly, meaning the skin of her fingers is fused all the way up, as well as the actual bones in her fingers.  Thankfully, however, only the  proximal phalanges are fused, which makes it a little easier to separate.   

 

Her right hand will be a little more involved.  He will separate the 4th and 5th finger, simple complete syndactyly, so only the skin is fused, not the bones.  He will separate digits 1-3, create a webspacing for the thumb, and actually completely remove the 2nd digit.  As you can tell from the picture, her 2nd digit seems to branch from the third.  While she technically has a corresponding metacarpal in the hand, the proximal and intermediate phalanges are fused with the 3rd digit and her distal phalange is distorted in such a way that makes it unusable.  I discussed with the surgeon the possibility of saving that finger and completely reconstructing it and while he seriously considered it, he was certain that while he could construct a finger, it would not have any function and just be a stiff finger.  While aesthetically she would have five fingers, only four would be functional and that 2nd digit would just be in the way and make things more difficult.  He, of course, will evaluate once he is operating, but for now the plan is to remove the 2nd digit completely, including the metacarpal.  Next year, she will have a 2nd surgery on her right hand to close the cleft. 

Following the surgery, she will have casts all the way up her elbow for 2 weeks then those will be removed and she will have soft "boxing glove" style casts for another 2 weeks.  After those are removed, we will continue to have to see him for checkups every 2 weeks for a few months, only to start all over again in November with her feet.

I'm excited, I'm nervous, I'm anxious, I'm a little bit of everything. I will of course post updates following her surgery, but thank you for continuing to think of us and keep us in your prayers!!

5 Months!

Okay friends, let's talk 5 months!  Sawyer is doing amazing.  Her personality is certainly developing---she is sassy, she is sweet, she's a giggle monster, and a snuggle bug.  I'm pretty sure I say this every time but we just adore her and can't get enough of her.  It's been a very busy month for us so here goes.

Weight-wise...we had a little rough patch at about 4 1/2 months where we went to the doctor for a cough and upon weighing her there, she had only gained 6 ounce in 20 days.  Our goal is 0.5-1 ounce per day so it wasn't quite cutting it.  Last post I mentioned she was able to take straight pumped breastmilk---shouldn't have said it because, of course, a day later her reflux worsened.  Then I tried EBM + Enfamil AR 1:1 and she seemed to do well with that, however, with her weight check being less than ideal we upped the formula amount to Enfamil AR + EBM 2:1.  Are you following?  Reflux has been okay, but she's just not a vigorous eater.  Ideally we're trying to get her to take 5 ounces every 3 hours during the day since she sleeps through the night, but most of the time she could care less about eating and is happily satisfied with 4 ounces.  Oh the struggle.  In any case, at around 5 months she had gained a full pound and was hovering around 10 lbs 7 oz.  Now that we're 5 1/2 months in, she's about 11 lbs.  I'll take it.

Therapy-wise.  Oh therapy.  She's hit or miss.  She's making great improvements and getting so strong!  She's hitting her milestones but usually on the later side of normal. Every specialist we have seen has commented on how strong she is and how advanced she seems for her age and size (though she be but little, she is fierce).  According to our therapists, Sawyer has lower tone but the specialists seem to disagree.  Maybe they are cutting her more of a break for being premature and IUGR. Tummy time is hit or miss, as well.  Sometimes she tolerates it and other times prepare for a Sawyer meltdown.  I'm waiting for that magical moment when she will actually enjoy it.

Current Likes:

• Bouncing on the exercise ball (actually part of her therapy)
• Long walks
• Play dates with friends
• Playing with her feet
• Rolling from tummy to back (see ya later tummy time)

1st sleepover with her BFF Levi

Dislikes:

• Mom going back to work
• Napping in crib

Now for the big news this month.  Since being discharged from the NICU, I've been putting off making an appointment with a geneticist because I was seriously dreading it.  Every time I thought about going to visit one, sitting in their office, listening to them pick apart every little difference that Sawyer has and what's wrong with the picture, just made me sick to my stomach.  I'm a mother and a nurse, so you better believe I have thoroughly assessed every inch of her and would like to think that they wouldn't find anything I hadn't already found myself...still it's tough to hear someone scrutinize your daughter.  I had also been forewarned that geneticists tend to be very clinical.  While they are brilliant, they are blunt and can come off as insensitive.  I ended up making an appointment with a geneticist at Texas Children's Hospital that was recommended by a good family friend.  I called on a Monday for an appointment, was told he didn't have availability until after October, wasn't able to make an appointment because their scheduling system didn't go that far in advance, but then by God's good grace, they called me back 10 minutes later and said they could see us on the following Thursday.

If I tell every detail, this is going to be a super long post, so shortened version---Texas Children's Genetics Clinic was wonderful and we had a great experience.  Everyone from the ladies that checked us in, the nurses, the genetics counselor, and specifically, the geneticists, were so kind. They examined Sawyer, looked over the genetic tests results we've already done, and honestly said that Sawyer doesn't fit into any particular syndrome that they know of.  Our main geneticist recommended that we have a trio whole exome sequencing test done, which will look at thousands of Sawyer's genes (and ours) and look for mutations that may be responsible for her differences.  It will also give us insight on if there is anything else we should expect in the future.  All three of us will have our blood drawn for this test, but we are still awaiting insurance pre-approval before we can get started, then it can take 6 months for results.  While we still don't have any more definitive answers, I feel like we are heading in the right direction and I'm grateful to add such a kind geneticist to our team.

This past week we also met with another hand surgeon in Houston for our third consult.  Truth be told, initial impressions based off of his office were not positive.  I just about turned right back around as soon as we walked through the door, because it was not kid friendly and very, very plain.  The exam rooms looked like it was from the 1970's with a brown leather exam table and old-school x-ray light up box.  He also only sees patients in the evenings so we had a 6pm appointment in downtown Houston---we were all tired and restless by the time we got there.  However, we were most pleasantly surprised.  He was very sweet and gentle with Sawyer and really seemed to care about her.  He sat down with us, thoroughly examined her hands and feet, then talked to us about what he recommended which was slightly different from what the surgeon's in Dallas had planned.  He suggested we do the first surgeries on her hands to separate the fused fingers at the end of July, surgery on her feet at the end of November, then the 2nd surgery on her right hand to close the cleft sometime next year.  I'm happy with his recommendations but am already anxious about a surgery in July.  He said to expect 2 weeks of casting for her hands (all the way up past the elbow) and 6 weeks of casting for her feet (up past the knee)---eek.

What Ryan and I really liked about him was that he took quite a bit of time to explain things (including drawing pictures and bringing out a model hand to show us anatomy), complimented us on our good questions (not our first rodeo), and seemed genuinely interested in Sawyer.  We haven't officially chosen him to be her surgeon, but we are certainly praying about it and discussing it.  Icing on the cake was when he went to get his calendar to put down tentative dates for her surgeries and came back with a paper calendar to pencil her in.  That just about sealed the deal.

In just a few weeks we'll have our 6 month checkup with our pediatrician and I'm anxious to talk to her about everything that has happened in the past 2 months (and get an official weight check)!  Until next time, prayers that we'll make the best decision for Sawyer regarding surgeries and her therapies and prayers that she'll continue to gain weight so that her little body will be able to tolerate anesthesia better if we decide to go ahead with a surgery in July.

As always, thank you for keeping us in your thoughts and prayers.

love,
Team Sawyer

4 Months!

Sawyer is a third of the way through her first year---time slow down!! I have to say I'm so so excited for things that come with her getting older (like starting solid foods and crawling) but I'm going to miss this stage when she is so darn cuddly.  Seriously, I want to snuggle her all day every day. #snugglemesawyer

On her 4 month birthday, she weighed in at 9 lbs even.  The following week at her actual pediatrician appointment, she weighed 9 lbs 6 oz! Still in the 1st percentile on the 34 weeker growth chart, but our pediatrician said she's staying on the "Sawyer curve" and that's what counts!

 

 

This month she's made a bunch of leaps.  She's babbling like crazy and mimicking noises that you make.  The other day I was washing bottles and singing her Amazing Grace and she started "singing" with me.  If I stopped, she stopped.  If I sang, she sang.  She either likes singing or she was trying to cover up my voice because it's terrible.  :)

She is also starting to giggle!  I pretty much spend all day trying to get her to do it.  My trick? Tell her you're going to get her neck and give her lots of kisses.  You'll at least get a big smile, but sometimes that precious laugh.

Still hating tummy time, but dare I say not as much as usual?  Really working on strengthening those arms.  Poor girl got her mom's upper arm strength (or lack thereof), but that core though!  She is desperately trying to sit up in her rock n' play.  Still has physical therapy twice a week and some days she's good with it and other days her sessions end in tears.  The following picture was how she felt after therapy this past week.

 

Feeding-wise within the last few days, she has magically started taking straight EBM without any sort of thickening!  I don't know where this came from, but hopefully it continues (and her reflux does not worsen) and we can start whittling down on the freezer stash.

Current LIKES:

• Reading stories
• Looking at reflection in mirrors
• Singing
• Bathtime
• Car rides and stroller rides

Current DISLIKES:

• Tummy time...

Lastly, we went for our orthopedic consultation in Dallas at the end of February and unfortunately, we didn't have the best experience.  We had two appointments for the day, one with a hand specialist and the other with a general orthopedic specialist.  Our first appointment was with the hand surgeon and while I had tried to prepare myself for the potential that these specialists may not have stellar bedside manner, I never expected to leave the appointment in tears.  Without going into too much detail, there were some insensitive remarks made regarding Sawyer's condition on all different levels, but that I could handle because I was a nurse (her words not mine).  After reading and hearing stories about miraculous things they could do for children, I was disappointed by her recommendation for Sawyer's fingers.  She didn't anticipate separating the two fingers on her left hand, since they were functioning as one just fine and may lead to scarring, and with her right hand, she would make it so that Sawyer would have 4 functioning fingers.  Ryan and I had anticipated that's what would be done with her right hand, but really thought the fingers on the left hand could be separated easily.  Regardless, there were so many things that were wrong about that consultation and if you're really interested, stop by for coffee and we'll chat, but in the meantime, onward and upward.

The general orthopedic specialist was wonderful.  She told us what we expected regarding her feet---not much to do surgically for functionality and not much they could do cosmetically.  However, she reassured us that Sawyer would walk and run with the best of them and not be slowed down by her differences.  She also did a spinal ultrasound because Sawyer has a deep sacral dimple---all normal! Yay!

Truth be told, I originally wrote this post all fired up to say that we would not be returning to that particular hand surgeon and I had already made appointments with two others to get second opinions.  Then yesterday we had an appointment with a hand specialist here in Austin for that second opinion.  He was everything I could ever dream to have in the surgeon who would be operating on my daughter in the future.  Kind, personable, thorough, gentle, amazing with Sawyer, and humble.  After looking at the x-rays and doing an assessment of Sawyer, one of the first things he said was "I'd really like to refer you to a surgeon in Dallas."  I smiled and told him we had already been to Dallas and turns out we had actually met the hand surgeon that was his very good friend and had played a big part in his career.  He spoke the world of her, said she was brilliant and the best of the best and if his children needed surgery, he would choose her in a heartbeat.  I didn't openly tell him about our experience with her but he could definitely tell my hesitation because he continued to look me in the eyes and reassure me that she was the best.

He gave us his opinion on what could be done with her hands which is exactly what I was hoping to hear.  He then asked what his friend had recommended, which differed regarding separating the fingers on her left hand and he said to just tell her what we wanted and she could make it happen.  Maybe it is as easy as that, we'll see.  He thought the right hand with cleft would be very complicated (and he wasn't quite sure what to do with the cleft) and that he thought it was in Sawyer's best interest to continue on with Dallas.  I appreciate his honesty, but disappointed because we really, really liked him.

 

Now we are kind of torn about how to proceed.  I realize we have time, they don't want to begin surgeries until December or so, after she's a year old due to the anesthesia risks.  But you know me, I like to have a plan ready to go.  We still have one more appointment with a surgeon in Houston in April and I guess we'll go from there.  If any of you mommas have advice on choosing specialists and what qualities are most important, send it my way!

Thanks for the continued notes and messages, as well as your thoughts and prayers.   This sweet girl is doing so well and we can't wait to see how she continues to grow!

love,

Team Sawyer

3 Months!

I can't believe Sawyer is three months old already!  Time has flown by since we've been home from the NICU and we are just enjoying this sweet girl more than we could have ever imagined.  I didn't get a 2 month update in but that's okay, we'll just start with 3 months!

Sawyer was discharged from the hospital weighing 5 lbs 7 oz.  At her official 2 month checkup 2 weeks following discharge, she weighed 6 lbs 3 oz and at her 3 month check up, she was 7 lbs 12.4 oz!  This puts her at an average gain of about an ounce a day!  In the NICU, she gained about an ounce every 3 days so I'd say she is thriving!  She's still only in the 1% on the adjusted preemie growth chart, but she's staying on "her own curve" so we'll take it.  We are sporting newborn size clothing still and newborn diapers, but I have a feeling we'll be switching to those size 1's and 3 month clothing soon :)

Reflux is still a beast, but we've been able to wean the amount of rice cereal in her formula and have been able to start adding a few feeds of thickened breast milk in there.  Girl loves to eat though, thank goodness.

Her occupational therapist comes twice a week now to work with her, do an evaluation, and give us homework for the rest of the days.  Developmentally, she's a little behind on milestones for her age and unfortunately, despite being 6 weeks early and <3% for weight, she doesn't get a break and is expected to perform on track with other 3 month olds.  We're focusing a lot on strength and tone, as well as tracking with her eyes.  Our biggest challenge is getting her to tolerate and enjoy tummy time which she needs to do in order to strengthen her neck and arms.  She does okay if you modify it with a boppy pillow or have her lay on you, but screams if you put her flat on the ground.  Her speech therapist is also going to start coming weekly to work with her on oral-respiratory and motor skill work.  

Since we're pretty much on house arrest until RSV and flu season is over, we've just been spending lots of time cuddling...

...and taking naps with dad.

Curent LIKES:

• Lights!---on the ceiling, on your phone, on the play mat.  Like a moth to the flame, she is instantly drawn to any sort of light.  
• Walks in the BOB stroller
• Car rides---looks around for a little bit then falls asleep
• Snuggles
• Music---pair with lights and she's a happy girl
• Baths 

Current DISLIKES:

• Tummy time

This past week we had our first appointment with our pediatric ophthalmologist.  Absolutely loved him!  Report for Sawyer's eyes: first, he said on a scale of 1-10 (10 being the worst) he would rate her microphthalmia of the right eye a 2.  We'll continue to watch and make sure her orbit (area/bone around the eye) continues to grow, but he doesn't think she'll need prosthetic orbital spacers.  Second, her right eye iris coloboma does cause some light sensitivity, so need to go on a hunt for some super cute sunglasses for her to wear.  As far as the retinal coloboma (only half of her retina developed), he was optimistic that with her right eye she will be able to see colors, shapes, and potentially very large lettering like on signs or be able to count fingers held up close to her.  Regarding both eyes, she's slightly near-sighted.  We already knew she would have to wear glasses as "protection" because of the coloboma, but looks like she'll also need them to have a prescription.  He said this is actually a blessing because compliance with wearing glasses is much better when you actually need them to see better, rather than just wearing them for protection just in case.  Otherwise, he told us to come back when she's about a year old and we'd go from there.

Our application to a Children's Orthopedic Hospital in Dallas was accepted and we will go visit them for a consultation at the end of February.  Very excited about this---we've heard nothing but wonderful things about the hospital and I'm looking forward to hearing their opinions.

I think that about sums it up for this past month, we'll see you again at 4 months!

love,

Team Sawyer

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