Happy Birthday, Sawyer.

Dear Sawyer,

Happy Birthday my sweet, sweet girl!!  I can't believe it has already been a year since you were born.  They say time flies and I feel like we just blinked and a year went by.  Let me start by saying, you are my favorite.  You are my favorite reason to wake up every morning.  You are my favorite to snuggle with.  You are my favorite to share food with.  You are my favorite to laugh with.  You are my favorite reason to never give up.  You are my favorite.  Your daddy and I love you more and more every single day, more than we could have imagined was possible.

On the day you were born, you were surrounded by people who loved you and cared about you.  Your doctors, nurses, family and friends wore little badges that said "Team Sawyer."  We could not wait to meet you and while I would have given anything to spend every last second with you, things don't always go as planned.  For the first 51 days of your sweet life, you spent them in the Neonatal ICU, growing and learning how to eat, but you had some pretty amazing people helping to take care of you.  The night we brought you home will forever be one of my favorite memories.  We sat in front of the Christmas tree and looked at the lights, we walked around your room, we snuggled for hours.

In your first year, your precious little body has endured more than most and I am constantly in awe of your strength and resilience.  What would break others, only makes you stronger.  You wake up each morning and take what life has given you and embrace it with pure joy.  I see the determination in your eyes and how you take any challenge head on that we set before you.  You continue to teach us new things every day.

A few things we've learned about you this year:  You have a gentle little soul, but you also have a fierce and determined spirit.  You are feisty and sassy.  You are shy at first and take your time to warm up to new people, but once you do, you have the best time with them.  You are very observant.  You are definitely a mama's girl (makes me really happy) and generally prefer to be held by me if I'm in the room, but that's okay.  You love to crawl all over dada or wake him up in the mornings. Your laugh is infectious.

At one year, you are eating everything in sight.  Now you would prefer whole foods to your bottles and want to feed yourself whenever possible.  We introduced you to queso and tortillas and girl, there's no going back.  Some of your other favorite foods are sweet potatoes (in any form), cheese, spaghetti, and applesauce.  Right now, you're taking about two bottles a day still of formula just for extra calories but otherwise, we've made the switch to just milk and water and whole food.

You are a seriously fast crawler but can also stand up and cruise along anything and love to push your walkers and chairs around...I have no doubt you'll be walking soon.  You were officially discharged from occupational therapy right at 11 months and have made leaps and bounds this first year and we are SO proud of you.

I started taking you to a little play gym and you love to chase the other kids around and climb over everything.  Being outside is still your favorite.  You squeal and kick your legs if I mention going outside or as soon as I open a door, you crawl full speed towards it, laughing the whole way. You LOVE your doggies---Bailey lets you pull up on her and kisses your face and you like to chase her tail.  You like to throw Nelly food off your tray.

You can say mama, dada, bay-ee (Bailey), neh-neh (Nelly), GranMary, yay (with clapping) and baaaa for a sheep. You are very vocal and when something doesn't go quite as well as you had hoped...let's just say it's not hard to figure out what you do and do not like. :)  You are still not a fan of elevators or doctors/offices, but we're working on that.

You LOVE to play patty cake and sing songs, especially the itsy bitsy spider.  You still chew on everything and now have four six teeth to help you along.  Diaper changes are a wrestling match and are usually quite an endeavor to undertake....add putting on clothes to that list, too.  You are happiest right after a bath, crawling around like a wild woman without any clothes.

Sawyer, you not only light up our lives, but everyone around you.  You are the star of your own show. We celebrate each of your victories and rejoice with each little milestone.  They say it takes a village to raise a child and Sawyer, your village is amazing.  You have friends and family from all over praying for you and thinking about you each day.  We love you so much, Sawyer.  You are perfect in every way and I am so thankful that God gave me you.  Happy Birthday, Sawyerbelle.

love,

Mom

Here's a special Video of Sawyer's first year :)

9 Months! 10 Months! 11 Months! And Specialists.

First off, how is my baby 11 months already??? I can't even believe my next post will be for her first birthday!  I'm not ready...

9 Months-10 Months!

I'm grouping these months together because they kind of seem like blur to me since her surgery was during this time.  I really feel like we pulled the rug out from under her.  Prior to surgery which was about a week before she turned 9 months, she was SO, so close to crawling, like taking a few strides forward and back before rolling over or sitting up.  We even joked she would probably take off the day before surgery, but then we put a road block up.  After surgery, she had to get creative to even sit up and roll over, let alone try to crawl.  She mainly just did somersaults to get around.  That being said, her core is ridiculously strong now AND she started crawling right at her 10 month birthday!!  Considering she was born early, spent 7 weeks in the NICU, and had major surgery and was in casts for a month, I am so THRILLED with her progress.  I'm telling you, she's determined and has got some fight in her.

13 lbs 8 oz

These months she really enjoyed trying new foods.  She's tolerating pretty much all textures and basically eating anything we do, so it's been fun letting her  try everything.  Her favorites were waffles, peaches, guacamole, yogurt, potatoes, fruit and spinach smoothies, pasta, and puffs.  She loved trying to feed her self with the spoon or just getting her hands dirty and doing fist to mouth.  Obviously when she had her casts, we did all of the spoon feeding but she still enjoyed trying everything.

14 lbs 4 oz

Likes:

• bath time
• early morning walks
• Mickey Mouse Clubhouse---all smiles and giggles when the 'Hot Dog' song comes on!
• Standing

Dislikes:

• surgery
• casts
• antibiotics

11 Months!

14 lbs 12 oz

This girl is on fire!  She's crawling everywhere, pulling up and cruising, letting go and balancing for short amounts of time.  She's eating everything you can imagine and so far her only dislike is canned green beans (can't really blame her).  She loves being outside playing on a blanket, playing with leaves and grass, watching the dogs run around, and swinging.  Diaper changes are a bit of a wrestling match...can't get her to stay put and usually have to chase her down to get a diaper back on her.  She is a curious little thing and loves exploring.  We brought our other dog, Bailey, back home and Sawyer just LOVES her sweet kisses and getting to play with her.

Food-wise, she's started taking fewer bottles but more real food.  She still loves sweet potato in any form, but also loves pasta and sauce, turkey and cheese, pumpkin bread, roast and potatoes and carrots, guac and beans, just about anything.

Likes:

• crawling after the dogs, trying to find cords, pulling up on everything
• still loves bath time
• going on hikes

Dislikes:

• Doctor's offices
• elevators
• diaper changes

Specialist Updates:

We've had quite a few appointments since my last post, so let's get you caught up starting with her 10 month pediatrician's appointment.  Dr A was very pleased with how well Sawyer was doing with both eating and development.  Sawyer is still hanging out in the first percentile on the chart and while she hasn't had any "catch up growth," she's still on her curve and growing---just slowly. :)  Prior to the appointment as Sawyer began standing much more frequently, I noticed that she locked out her right leg when she stood.  I did my quick little pull down measurement method and realized Sawyer's right leg is shorter than her left.  I had Dr A confirm that for me during our visit and it hasn't been this obvious beforehand so we're not sure at what point there really became a discrepancy.  Nothing that we would do now, but perhaps she'll need right shoe inserts later on.  (Just add it to the list)

After Sawyer's surgery, her right eye (which has the coloboma) started to cross inwards much more frequently which is something we had been told to watch.  Essentially, that eye is weaker so it takes that much more work to keep it aligned and tracking appropriately, but whenever she's tired, stressed, etc, it tends to deviate inwards.  We were due to see the ophthalmologist at a year, so I went ahead and made her appointment early.  We saw Dr W again, whom we still really love, and he wasn't at all surprised that her right eye is crossing.  Honestly he said there wasn't much we could do to help it, short of surgery on the muscles and didn't recommend that until much, much later (thank goodness).  Because Sawyer's right eye has such a severe defect of the retina, patching and strengthening exercises won't help because the vision is just not there.  We'll continue to do our tracking exercises that we were already doing, but thankful patching isn't in our future.  We were expecting him to recommend glasses at this point for protective purposes, but even for those he said he would just wait another year until she would be more compliant.  The even better news, her left eye has perfect vision.  He said that eye was totally healthy and that made him very happy.

We finally had all of our blood drawn for the Trio Whole Exome Sequencing Genetics Test. Insurance approved it back in July but we've had to wait to have it drawn due to scheduling conflicts, surgeries, and casts.  Not a very good experience for Sawyer---she did not enjoy being held down and poked, but now its done and we just have to wait 6 more months for results.

And now....
Post-cast removal update!  

Sawyer's casts were taken off at exactly 4 weeks and 1 day post op.  We had a countdown going on our chalkboard and I was unbelievably excited for that day.  I had found a few other blogs that chronicled the post-cast experience, what to expect with scabbing etc,  and THANK GOODNESS I had or else Ryan and I would have been completely shocked when the surgeon took off her casts.

I gave Sawyer a dose of Motrin prior to the appointment, hoping to help with the discomfort from removing the pins---who knows if it actually did anything.  Sawyer sat in my lap while the surgeon unwrapped the casts, took off the plaster part, and unwrapped all of the old blood soaked gauze around her hands.  We started with the right hand and Sawyer was a champ---didn't cry, fussed a little bit when he took out the pin in her thumb, but overall was easily distracted.  Her hand was VERY scabby but I felt prepared for that and was super happy with the way things looked.

Then we got to the left hand.  He had difficulty unwrapping the gauze from her fingers and ended up pulling the top layer scabs off.  Oh my goodness, add this to the list of heartbreaking moments.  She immediately burst into tears and you could tell it was really painful.  Her two fingers on the left hand were very, very red, had big scabs, and where he had just pulled off the top layer it was oozing, bloody tissue.  Not to mention, once the casts were removed it smelled like a dead animal.  So the smell, combined with the raw fingers, combined with her screaming---I started to feel really hot, nauseous, and dizzy.  I made it through the pin removal in both fingers (these pins were twice as long as the one in her thumb), but once he said he wanted to rewrap those fingers and allow them to heal more, I looked back at her fingers, started seeing spots and must have turned white because both the nurse and the surgeon asked if I needed a moment.  I just calmly said I needed to give her to Ryan for the rest of this and get some water.  Mom of the year over here...I went into a corner and had a few sips of water until he finished wrapping.  If there was ever any question before, I'm certain now, I could never be a wound care specialist.  Afterwards, Sawyer calmed very quickly thankfully.  He had wrapped both hands up but told us we could take off the right hand bandages when we got home, but to leave the left hand ones on through the weekend to allow them to scab over again.  

Our only instructions were to let her play in the water often to allow the scabs to come off easily, massage lotion/oil into the scars, and encourage her to use her fingers.  We weren't expecting her to immediately start using her hands again, but to be honest, I had unrealistic expectations of how things would be once her casts were removed.  I thought she would be SO excited and just want to touch things and play again.  Nope.  For the first week she was very guarded with her hands.  Did not want to roll on the ground or play with things.  She was very cautious and tried not to move them at all.  After a week, she started using her right hand more, still not to its full potential, but still guarded her left hand.  We took the bandages off 3 days after he wrapped them like he said and it was a pretty scary site.  At first I thought the end of her ring finger was necrotic, but turns out it was just a huge scab with old stitches built up in it.  That ring finger is still very pink---you can tell that a large portion of grafting was used for that finger and it's just new skin.

Now at 2 months post surgery, she is using her hands so much more, picking things up, feeding herself,  pulling up on things.  We are doing daily coconut oil massages to help with healing and soften the scar tissue.

We are extremely happy with the shape of her hands.  Seriously, doing a before and after, I am amazed.  I mean really, let's all do a little fist pump for finding a surgeon who is not only crazy talented, but just a kind man to boot.  He told us she was not only his smallest patient, but also his bravest. :) There is still more to do on her right hand regarding straightening her now 2nd digit and perhaps thinning it, as well as closing the cleft.  We also recently went back for a follow up and it looks like she will need a second surgery on her left hand, as well.  She's not bending those two fingers at the knuckle and it's difficult to do so even passively meaning the tendons were probably not inserted in the correct location allowing them to pull and glide.  We knew there was a chance of this but were hoping for the alternative.  Again, this will be done sometime next year. 

The truth is... this has all been really hard.  I know practically every single picture I post of her is a smiling, happy girl, but she's definitely had her fair share of unhappy moments and with good reason.  The surgery was hard, the time with casts was hard, the cast removal was hard, this healing time is hard.  Our hearts break for her over everything she is having to go through, the pain she has experienced, the frustration she has dealt with, and thought of having to do it not once, but two more times!  I know, I know, she won't remember this, but y'all, that doesn't make the here and now any easier for her or make her pain any less.  Not to mention she's experiencing some serious PTSD from all this.  She used to be great at doctor's visits and now as soon as we get into a room, she gets anxious, the doctor walks in and she just immediately starts crying.   Even for non-painful exams, she looks terrified.  So disheartening.

That being said, at our last visit with her surgeon, he started discussing her surgery on her feet in November.  He took new X-rays and drew us a picture of his plans.  We felt he was slightly less optimistic about the outcome, even going so far as to say she would still need special orthopedic shoes and that the main reasons for her surgery would be cosmetic and comfort.  While comfort is a priority, cosmetics is not.  Her feet will never look normal and his description of the surgery was a little scary.

His plan was to separate her first and second toe on the left foot, close the cleft, and actually bring up her entire pinky toe so that it was in line with the other two.  To do this, he was going to remove the 2nd metatarsal from her right foot and fuse it to her 2nd and 5th metatarsal in her left foot.  On her right foot, he was going to cut/break her big toe and straighten it, then bring it in close to the 4th and 5th toes.  Here's the picture for reference. :)  

 

Ryan and I both left the appointment feeling unsettled and not confident in the decision to go ahead with this surgery.  So.....I made an appointment for another opinion. (I stop at nothing) We actually went to see the Pediatric Orthopedic Surgeon that came to visit us in the NICU when she was only 3lbs and he was just as great today as he was then.  He watched her step and walk and said he did NOT recommend surgery, that her feet were functioning beautifully and that honestly, surgery at this point would just be more scars and pain.  He did not think she would need orthopedic shoes but possibly just some soft inserts made for her left foot since it's so narrow.  He also examined her leg length discrepancy and didn't think it was a concern at this point.  He was positive, he was encouraging, and while he said she may need some minor surgery later on, he definitely didn't think it was something to be done right now. 

We still absolutely love her surgeon in Houston and are amazed at everything he does, but just don't think surgery on her feet is a necessary evil at this point so will continue on with just her hands.

Ryan and I are SO relieved and excited and relieved! We were both already  dreading her November surgery and questioning whether it was in her best interest.  Now we can just let this little girl mature and grow and do her own thing without any hindrance.  Seriously, we are so thankful.  See you back here when this nugget turns one!

love,
Team Sawyer

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!!