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.
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| 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.
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| 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!
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| 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
- 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.
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.
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
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.
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
