Sawyer's 1st Surgery

Oh friends, this has been a wild ride.  Not going to lie, it hasn't been easy.  We are still learning how to maneuver with these larger than expected casts, how to hold her comfortably, how to help her sleep and play, and how to keep her entertained.  Despite my extensive research on all things related to her surgery, I'm still not sure I could have been prepared.  We each had our share of meltdowns during that first week and Ryan and I had all but announced that we would not be during any more surgeries because this was miserable and we couldn't stand her being so uncomfortable.  And then a week passed and we survived and the sun came out again (aka she started sleeping) and now we've come to terms with how things will be and what we can expect the next go around.  Let's start from the beginning though.  This will probably go into far more detail than most care to know, but when I was preparing for her surgery, it helped me reading other mom's anecdotes about their experiences and my hope is that this helps someone, too.

Morning of her surgery

Sawyer's surgery was scheduled for 10:00 on Wednesday morning and we headed down to Houston the day before.  My mom rode with us and Ryan's parents drove separately, but we all stayed in hotel just across the street from the Children's Hospital which was the best decision ever.  We shared a two bedroom suite with my mom that had 2 bathrooms, living room, full kitchen, and dining room, and it was so nice to have that space with Sawyer and be within walking distance of the hospital.

In the waiting room

Sawyer was allowed to have formula 6 hours prior to surgery and breastmilk/clear fluids 4 hours prior, so I woke up at 3:45 on Wednesday morning to give her a bottle of formula.  She basically stayed asleep while she ate and went right back to bed after.  I woke her up again at 5:45 to give her some breastmilk---she wasn't really hungry but she took about 2 ounces which I knew would help hold her over until surgery time.  We arrived at the hospital as scheduled around 8:00 to get checked in.  They had a relatively large waiting room for day surgery patients with lots of toys, small tvs with video games, plenty of seats, and an attached room for eating since there was a strict 'no food or drink in the waiting area' because every child in there was hungry and thirsty.  They also assigned a number to each patient that you could use to track your child on the multiple status boards throughout the room during the various stages of the day, such as pre-op, in OR, anesthesia started, procedure started, recovery room, etc.

Keeping Sawyer entertained

For the next two hours we played, completed registration, they did an assessment and vitals on her, and just waited.  She enjoyed getting to watch the other kids run around and play with the big toys.  About 9:30 she was pretty much done with the day and after some bouncing and walking around she finally fell asleep on my shoulder which gave me some good cuddle time before we had to go back to the pre-op room.  Right at 10:00 they called us back to pre-op and they had us change her clothes and put her in an outfit that was entirely too big for her.  It was supposed to be a shirt and shorts, but she wore the shirt as a dress...someone needs to order Sawyer-size.  Then we had a chance to speak to our anesthesiologist, surgeon, fellow surgeon, and OR nurse.  We signed all of the consent forms and after not enough hugs and kisses, the nurse took Sawyer back to the OR.  The nurse said that the anesthesia portion should take about 30-40 minutes so not to leave the waiting room until she had called and let us know the procedure had started.  They took her at 10:50 and she didn't call us until 12:10.  Right before the nurse called, I told Ryan that I bet they had trouble getting an IV on her and I should have told them to use her scalp vein.  When I spoke to the nurse, she apologized for how long it took and sure enough, they couldn't get an IV even with multiple attempts with ultrasound guided and had to put one in her head.  Later that night, despite the anesthesiologist asking me not to, I counted the number of pokes---18!!  The anesthesiologist said he hated scalp veins and they were always his last resort, but I feel like "last resort" needs to come a lot sooner than 18 attempts! Thankfully, they use sleeping gas before IV attempts so she wasn't awake.

Ready for surgery!

There were two men acting as liaisons that went back and forth to the OR and waiting room to deliver updates from surgeon to family.  They were amazing.  So personable, kind, cheerful, and fun to talk to and they kept us up to date on each step throughout the day.  During this time, we took turns taking breaks going to get food, walking around, but mostly just stayed put and waited.

Around 5pm, Sawyer's surgeon came to update us and after initially shaking our hands and saying things went well, he pulled up a chair and told us our little girl had worn him out.  Sawyer's left hand, separating the 3rd and 4th digit (complex complete syndactyly) took about 1 1/2 hours.  Her right hand, separating the 4th and 5th digit (simple incomplete syndactyly), removing the 2nd digit and corresponding metacarpal, and creating a webspace between the thumb and 3rd digit, took about 3 hours.  It was tedious and intricate work---I can't even begin to imagine what it's like to be working on such tiny hands, let alone reconstructing ligaments and splitting nerves.  He ended up needing to place long pins in the two fingers on her left hand and one pin in the thumb of her right.  Her 3rd digit on the right hand (now 2nd) had already grown curved more than it should due to the fusion, so when she has her next hand surgery to close the cleft, he will have to straighten that finger.  He brought out his digital camera to show us the before and after pictures and we are so amazed!  Prior to her surgery, I was having a lot of mixed emotions about it.  I LOVED her little hands just the way they were and felt terrible for making her undergo surgery for them.  But after seeing those pictures, I am so excited for her to have more function with her little fingers.  He is brilliant and you can see the delicate care he took with each hand and definitely know we made the right choice.

Around 5:30p, they allowed us to see her in PACU.  I thought saying goodbye to her in pre-op and waiting all day would be the hardest part, but then we walked into the PACU and she was in a big crib with her head elevated, eyes were closed and her cry was hoarse and more like a whimper, with an oxygen mask next to her face, and big club-like casts on her arms---SO heartbreaking.  The nurse let me hold her right away but immediately I felt like a mommy failure because I couldn't figure out how to hold her with the casts and wires and I just seemed to agitate her more than comfort.  We tried to give her some Pedialyte and she took a little, but mostly just whimpered.  Eventually the nurse gave her another dose of Morphine and that knocked her out for another hour before we tried to wake her up again.  Ryan and I agreed later than PACU was our least favorable experience.  We gathered that the nurses here didn't see a lot of infants for day surgery, certainly not her size, but she kept asking me if I thought she was okay to go home yet (Um, I have no idea?!) and then later wasn't sure how to take the scalp IV out---I just about did it myself.  A doctor, who didn't even come to see Sawyer, said we could go and without signing any paperwork, so much as real discharge instructions, they ushered us out the door about 8pm.  At this point though, I just wanted her out of there and home so I was okay with it.

I carried her in my arms from the hospital to the hotel because she cried every time we tried to put her down.  Once we got back to the hotel, Ryan and his dad went to pick up dinner and her prescriptions while I tried to give Sawyer more bottle.  The grandmothers made her a little nest in one of the hotel beds so we wouldn't have to lift her in and out of the pack n play and she slept from 10pm to 5:15 in the morning with a few whimpers during the night.

Day 1 Post-Op:

The day after her surgery was probably the easiest day.  Sawyer slept through the night after her surgery and when she woke up, she took some Tylenol and a bottle and pretty much went right back to sleep on my shoulder for another hour or so.  Sawyer was given a prescription for Tylenol with codeine, but the surgeon had said most parents found that alternating Tylenol and Motrin was just as effective managing pain.  I decided to give her a dose of the heavy duty pain med before the car ride home in hopes that she would be more comfortable.

Not too happy with life right now.

She pretty much slept the whole way and when we arrived home, she slept some more.  I was contributing this good sleep to the stress, fatigue, and likely the anesthesia still wearing off.

We had a little scare/panic moment (mostly me, not Ryan) when the tan tape on her right cast and gauze fell off and we could see her fingers in the cast!  The surgeon had said her fingers would be completely covered and here we had just driven 3 hours home and her finger was visible and slightly protruding past the hard cast.

Not supposed to happen!

I called the office right away and tried to explain to his assistant what had happened and asking what we should do---I got nowhere with that and she basically just told me to cover it back up, that he does not make mistakes, and I was crazy. (She didn't actually say that, but she was probably thinking it)  Ryan ended up calling back after me and asked for a way to contact the surgeon.  We ended up e-mailing him multiple pictures and asking if this was okay or we needed to come back.  Seriously, we probably wrote a novel of an e-mail and his reply was two sentences, "It should be fine.  You did the right thing."

So, we covered it back up with gauze and tape and called it day.  Until she started batting her casts on the things and hit that exposed finger.  Crocodile tears.  We almost put her back in the car and drove straight back to Houston, but then Ryan creatively cut a plastic cup and put it over that cast so it would protect that finger.  (2 weeks out and it's still working)  Thankful for a handy husband! :)

One thing that also surprised us was her skin graft site.  In my mind, I was thinking thin layer of skin-no big deal, but in actuality, they basically removed a roll from the groin area.  This is a picture of it covered, but underneath that is a large incision with multiple stitches!  Can't be comfortable.

Day 2 Post-Op:

Fussy. Fussy.  Fussy.  Sawyer was only content when being held, by me, and walked around.  She'd only sleep in motion on my shoulder or when driving around in the car.   That night was the worst.  I gave her the heavy duty pain med before bed and she would. not. sleep.  She was okay if you held her, but screamed if you tried to put her down.  I walked with her for hours, took her for a car ride around 1 am---still wouldn't sleep---, walked around some more, and she finally fell asleep in her rock n play at 4:30am and woke up at 7:00.  We were all completely exhausted the next morning and my back and arms ached, but we did the same thing that day.

So tired but still smiling.

Day 3 Post-Op:

We really started noticing how much her antibiotic affected her little system.  It seemed to upset her stomach and she had more signs of reflux after taking it---probably why she stopped eating.  She was all for the bubble gum pink stuff the first few days and then it became a struggle to get her to take it.  I'm talking 5mL, four times per day!

Day 4 Post-Op:

Sawyer started sleeping a little better this day.  She finally took a nap in her crib, as opposed to the car, and that night she did a good 4 hour stretch in her crib, then in my arms, then in the rock n play.  She was also much more content today and we started seeing our giggly girl again.

Out watering the plants with dad.

On the fifth day, she really started to perk up and continues to do so each day.   Now that we're two weeks post op, she is much happier, has mastered rolling over, sitting up, sleeping on her stomach (looks so uncomfortable with the casts), and is now eating better  She still requires lots and lots of entertainment since we basically took away her ability to feed herself, play by herself, self-soothe etc, so we tend to go from activity to activity pretty quickly and that's okay.  I sewed up the ends of some of her baby leggings and they make perfect cast covers---so stylish!

Using her face to push the buttons and taste the toy.

We are thankful for having one surgery under our belt, but not looking forward to doing this again.  Initially, her surgeon said we would only have the full casts for 2 weeks and then glove-like casts for another 2 weeks, however, after her surgery he thought she would probably need to stay in the full casts for 4 weeks and then glove like casts for another 2 weeks.  We go back to see him this week for a check up and we'll see what he thinks then.

Sawyer continues to amaze us with her strength and resilience and we are so proud of her.  A HUGE thank you to everyone for their continued support.  We have received countless messages of prayer and encouragement and we are so grateful for each one.  Ryan and I feel so blessed to have so many people rooting for our sweet girl!

love,
Team Sawyer

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