Hawk is 1!

I know all mothers say this - but, can you believe it?! Our little Hawk is one year old! And quite pleased about it, I should say. He loved hearing everyone sing "happy birthday" to him.

But this was on Friday, so let's back up a bit... back to Thursday, May 3rd, his birthday.

One year ago he arrived in the early morning - quickly (25 minutes after arriving to the hospital), 11 days before his due date, in the triage room, and with no doctor present! We were so relieved and excited to meet him and give hims his name, and then that day and following days were filled with concern and confusion about his physical condition (particularly the shape of his feet, hands, and mouth, and his inability to nurse properly). There were some very long, hard, anxiety-filled days with him in those first months, but alongside we very quickly received medical help from orthopedics and therapists and lactation consultants, and slowly we began to see improvements and changes.

And now, a year later, we have a little boy who is - in almost all circumstances - cheerful, outgoing, adaptable and curious. He eats well, loves his brothers, smiles a lot, has started to crawl, and can do all kinds of things with his hands. How "appropriate" that on his birthday we would spend the day at the hospital again - this time for his spica cast change! (which required anesthesia and an arthrogram, so it was a long day; we left home at 7  AM and returned at 7:30 PM) The staff there knew it was his birthday and really made it festive, with balloons, presents, singing, a cupcake, a big sign, plus the usual children's hospital treats like a new Build-A-Bear, visits from the therapy dogs in his room, and a school choir singing in the lobby. We've really had a good experience with Shriner's Hospital so far, especially because the staff all are so pleasant and helpful. And because it is a small hospital, we already recognize nurses and are recognized by them.

leaving the house for the hospital

he was really excited about the balloons!

also very excited by the waterfall in the lobby - anything to distract while waiting for surgery

I give you: the little boy who goes 8 hours without anything to eat or drink, and doesn't cry at all while waiting!

(This time Hawk now has a half-spica cast, which only goes from belly to knees on both sides, so now he can bend both legs.)

It's been a long day. Time to head home, go to bed, and wake up again tomorrow for another birthday celebration at home!

Three weeks of the cast

Three weeks into his spica cast and Hawk is doing great! He doesn't fuss or seem bothered by it (rather, it's my back that is bearing the brunt of effort from carrying him around!), and in fact he has started crawling/scooting backward! This is a HUGE milestone for him and shows that he has really improved with his upper body strength and hand strength/flexibility (i.e. getting his hand open to spread out his fingers while crawling). He seems to really love trying to crawl and gets 'talkative' while he's doing it. He also loves being in the stroller, so I try to get him outside everyday to keep happy and vary his positions. Thankfully we aren't in the heat of summer so he isn't too hot and sweaty in the cast.

I finally figured out a sleeping arrangement that works best for him, on an incline - with a big pillow under his head and back - and a pillow under his legs. It's been extremely challenging for him to get comfortable and adjust to sleeping with his *&%*$@@! helmet. (Cue crazed, exhausted laughter) As long as his legs are supported, the cast is fine, but it is the foam helmet that has frustrated him. His night-time awakenings got worse and worse since March, up until the point when he was waking up 3-5 times a night. (Jaja can attest to that during her visit two weeks ago.)

Finally I asked his physical therapist for advice, and she suggested we take 3 nights off from the helmet and hope for a "sleep reset". I wasn't feeling too hopeful but I didn't know what else to do. And...it worked. On the 3rd night without the helmet he slept ALL night without waking or crying. Then I put the helmet back on, and now he has only woken up once a night since then (and slept through again one more time).

And when awake, he is the most cheerful, agreeable little fellow, always ready with a smile!

Friday and warmer temps

We've slowly been getting warmer weather the last week or so, and we are all itching to be able to be outside more! Of course, true to spring, we've had some very windy days, some cold nights (still in the 30s so can't plant anything outside yet because of the risk of frost), and weekly rain. But slowly the blossoms are out and dogwood trees are blooming with pink and white and cream. When the weather is nice we are able to walk to Timo's preschool (although it's a mile each way), eat meals at the picnic table, have friends over to play outside, romp around campus and, like we did today, go for a bike ride on the Greenway.

The river is full at this time of year, and trout season is open now. Beautiful.

"I'm going to eat my snack outside because it's so lovely out there."

Recovery and first week of spica cast

Here are some pics from our first week back at home and learning to adjust to the spica cast. It was a quiet week with Timo and Mattias in Durham (and having an absolutely grand time there!!), which was helpful so we could get extra rest, get more comfortable with cast care & diaper changes, and figure out new seating for him at home and in the stroller (amended with pillows and supports). I also enjoyed taking him out for a walk every day. On Friday, one week and a day after surgery, I drove Hawk back to Greenville for an x-ray and check-in with the Dr, and he got the "clear" that the cast and position were still correct. We won't be back until the beginning of May when he gets a cast change and another x-ray.

new booster east that allows space and the sides for his legs to sit widely

We were amazed at how quickly Hawk adjusted to the cast and got over the discomfort and swelling. Within 2-3 days he was back to his normal eating habits, and by day 5 was back to his normal daily routines with naps (much shorter than when tired out from surgery, I'm sorry to say!) and play-time. He was a bit frustrated for a day or two about not being able to sit and scoot around on the floor, but now he seems to have adjusted. In fact he's able to get on hands & knees (a crawling position) and actually seems to enjoy it, or can lay down on his tummy.

He also has a special spica car seat which was loaned to us by the hospital, but I haven't taken a photo of that.

I got a new front-facing carrier, which he LOVES

One of his therapists brought this desk/chair on wheels for us to borrow; it has a padded bar that he can sit on. It's perfect! Since Mattias and Timo have come back, they've really enjoyed using it as a parking lot for cars and keep wanting to push it all around the house.

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One sunny day I really enjoyed taking Hawk on the Greenway for a 2 mile walk and picnic lunch. It was so nice to get to the end and sit on a bench with our lunch, listening to the river and not having to rush home or run after the big brothers.

Thank you all for supporting us so far! The first week is finished - approximately 9 more to go!

Hawk's hip surgery at Shriner's Hospital

Last week Hawk had his much-anticipated hip surgery to repair his dislocated left hip that he was born with. We've known since he was a few days old that he would need this surgery, and the orthopedic recommended sometime around 10-18 months. And now, he's 11 months old and the surgery is successfully finished! We are VERY thankful. The surgery was down in Greenville, SC at the Shriner's Hospitals for Children, a small hospital which specializes in orthopedics and in congenital disorders like cerebral palsy, scoliosis, AMC, and lots of others. For months we've anticipated (and at times, dreaded) this surgery; and yet, looking back just after a week, it was such a positive experience and we were not filled with anxiety or fear in those days preceding. We really appreciated the hospital staff and facility (and that's why we decided to go there), who were all kind, personable, patient, and willing to answer questions.

We arrived a day early for his pre-op appointment, and took a few pictures in the lobby to show the brothers. The same day that we left, Grandpa Hawkins fetched them and drove them back to Durham for a 10 day visit.

The morning of the surgery Hawk surprised us with how calm and cheerful he was. Despite not being able to eat or nurse for five hours, he was smiling at the nurses and didn't fuss at all until the last ten minutes. And then the anesthesiologist came and carried him in her arms off to the operating room. The procedure, open medial reduction, required an incision to his pelvis/hip area and cutting of some muscles to make room to manually replace the ball of the hip back into the socket. Afterwards the surgeon said, "It was hard...but we did it." Since his hip had never been properly situated, and because of his arthrogryposis, he was stiff. Afterwards they put him in a spica cast, from chest to ankle, with his hips angled outward to keep the proper position.

After the 3 hour surgery, he woke up and nursed (phew), and then had to have his cast refitted to make enough room in the diaper area, wrap moleskin around the edges, and put tape on top to prevent the cast from getting dirty and wet. The inside of the cast is lined with a waterproof barrier - although all of the nurses said, "Yep it's going to get stinky! Just do your best to keep it clean!" He was very groggy and in pain and unhappy about the cast adjustments!

He did not want me to put him down at all the first 24 hours after surgery, including at night. 

That afternoon was warm and sunny, so for a change we put him in one of the hospital wagons and strolled around slowly on the patio.

You can see how his feet were pretty swollen. On his left hand was the IV.

And... no pictures of the long night... or our groggy faces the next morning, BUT after the surgeon checked on him, he approved us to be released and go home that afternoon! We were pleasantly surprised because we had been told we'd stay 2-3 days, but boy was it great to be released and heading home on Good Friday afternoon. And, incredibly, by that time we could tell that Hawk was feeling a bit more alert, so it was good to get home and to our own beds.