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.

Add caption

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.

4 months old - and therapy update

Maybe I say this about all our babies - but, good gracious, this one is such a sweetie!!

He likes... smiling and 'talking' to people (very social baby); chewing on his fingers and trying to get his whole fist in his mouth; being held upright and looking out; watching and listening to his brothers; reaching to grab faces; reaching to grab books; reaching to grab toys - did I mention that he is reaching to grab and this is HUGELY good news for this boy! Using his hands to reach and grab things is one of his therapy goals, and he's surprised us all at how quickly he is learning. This month he also starting rolling over front-to-back.

We took a few pics when he turned 4 months old on Sep 3rd. He was still in his short casts at that point, and able to bend his knees and touch his legs for the first time. This week he got the casts off - the end of the Ponseti process! - and fitted for braces that he'll wear at night-time (to prevent regression). It is great to have his legs 'back'! We're surprised at how much his legs had grown in the casts - at today's check-up he was 5.1 kg or 11 lbs 3 oz, and 23.5". Still a skinny guy but now he's looking bigger and taller.

In the three days since getting his casts off, he's been sensitive about his feet and lower legs. Very stiff ankles and tight muscles & tendons. Also the foot shape is still a bit strange but such a difference from birth, and now he has arches!!! The right is a bit better than the left. The orthopedic showed me a couple of massages to do and I'm sure the therapist will help when she comes next week. Obviously we don't want them to regress so the stretches are really important because his tendons want to tighten up and pull back on the foot to where it was before. I read that the risk of regression is 30-50%, so it is possible he would have to do casts again if a foot starts to move. ...We don't really know long term what his feet will be like. We do know that he'll likely need these orthotic boots for a long time and potentially leg braces while learning to walk - depending on how his dislocated left hip recovers from eventual surgery. As with so many elements of arthrogryposis there is no real certainty of what the future holds, except we know it doesn't get worse as he ages, and so far he has improved well! We are hopeful, and very thankful for a cheerful little boy.

Surgery - and 3 months old

This past Monday was Hawk's corrective surgery on his feet, after 10 weeks of Ponseti casts, changed every week. While it was daunting and gave us some anxiety to anticipate the surgery, it was the necessary next step in correcting his feet shape. We feel very confident in our orthopedic, and the surgery was pretty quick - just over an hour to insert a temporary pin through the top of his foot and into the talus bone, and then cutting the Achilles tendon and  positioning the foot at 90 degrees. Now he is in a final set of casts for 4-6 weeks. Afterwards Dr Raustol will remove the pins and Hawk will wear soft splints on his feet (to prevent regression), and later orthotics in his shoes.

The week of his final casts and 6 days before his surgery, I took his casts off at home in the morning before his appointment. It was great to see how his feet have changed so much and now you can see the arch!! It was hard to photograph, though. And you can see how he doesn't have much muscle in his legs yet. He'll certainly be adding that to his daily therapy routine once the casts are off!

Sunday afternoon before the surgery, Jim and I drove Hawk to Asheville, where we stayed overnight at the hospital guesthouse. It made the morning easier since we had to report for surgery at 5:30 am. It helped to settle our fears, too, to be close by and ready for the morning. We were also SO thankful that Mom drove from Durham to be with Timo and Mattias!!

Saying good bye; Timo just learned how to make silly faces

Such a sweetie

The front of the guesthouse

The hardest part of the surgery was waiting for it to begin! Hawk couldn't nurse or eat anything after 3 am so he was just crying and crying... At one point Jim was holding him and he slept briefly. Then, when the doctors and nurses arrived to take him back, he perked up and started looking around and smiling at everybody. Typical Hawk!

After the surgery he woke up just fine - and hungry! I fed him and held him about 2 hours until he was ready to get dressed, and then we headed home. He slept a lot the next 24 hours and was a bit sensitive about moving his feet, but by Wednesday he seemed his normal, content self. The casts this time are the 'regular' ones so they are thicker and heavier. We continue to be so thankful for the great medical care he is receiving!

Learning to snuggle with his hawk

On August 3rd he turned 3 months old! He is almost 9 1/2 lbs (about 4.2 kg). Current likes include: bring held facing out, sucking his fists, listening to his brothers playing, doing stretches on the floor or pad, walks in the stroller, listening to rain, nursing to sleep. Current dislike include: cold diaper wipes,  stretching his arms above his head, and being put in his crib to sleep when he just wants Mommy to hold him. (Actually he does great in his crib at nighttime, but it's the daytime naps that haven't leveled out yet.)

Casts in progress

Hawk is now on his 5th set of corrective casts for his feet! The process to correct his "inverted talus" started when he was 3 weeks old (the same time as babies born with club feet, at least here in a country that has the medical care to correct the feet so early on), and the orthopedic doctor anticipates approximately 8 weeks of weekly soft casts, which slowly angle his feet down and inwards. Babies' bones are mostly cartilage at this age, so they are pliable and correct much more easily, and heal more quickly. This procedure is called "Ponseti casts". At the end there is a surgery to insert a pin up his heel, through his ankle and into the base of the leg bone; they also will cut the Achilles tendon so it can lengthen as it heals. After the surgery Hawk will have his final cast for 3 weeks.

Dr Raustol has seen a lot of success in children that go through this process, though he is a bit uncertain of how Hawk's body will respond, considering the tightness in joints that he was born with. It may mean the reshaping will take some extra time, or that Hawk will be more prone to regress in the future and will likely wear orthotics once he starts walking (we hope and pray!). So far the process has gone quite smoothly and we are already seeing the changes in his feet. Just today they took x-rays of his feet and saw the talus bone has moved the right direction, but still has some movement to make, so Dr Raustol has added two weeks to his casting process and then will take x-rays again.

We are SO thankful for the access to quality medical care, which hopefully means that Hawk's feet and legs will work properly and he will be walking and running normally in his life!!

Here are some progress photos. The first two show what his feet looked like when he was born.

And - photos from his first set of casts. He has done SO WELL and never even cried while they put on or take off the casts. The first week he pooped and peed all over the table (because they have to loosen the diaper to put the casts on high enough) and got quite a reputation... but he hasn't done that again. The casts go all the way from toes to thigh to ensure that he's not making any movement in his legs to disrupt the bones.

In the meantime, Hawk has started smiling! And he has long periods in the day when he is alert and happy and looking around. He seems to like to hear his brothers and will turn his head to see them. He also loves lying down, stretching and making cute noises and listening intently.

And two photos from today. He gets a precious 10-15 minutes between casts to stretch out his legs and get some nice touches and massages from mommy. It's really amazing to see him kick his legs and stretch out, because when he was born he didn't do any of that! The nurse also weighed and measured him today: 3.62 kg/8 lbs and 20.5 inches long. (That's 2 inches grown since birth!)

Look at the change in his left foot! (and a lot of dry skin)

Good job, little Hawk! We are so proud of you!

Exhausting but Fortuitous

Oh, the 2nd week of Hawk's life - phew!!! Now that he is 5 weeks old, perhaps I can think back on it - three weeks ago - and not feel too personally the intensity of the stress and exhaustion. After a routine weight check at the pediatrician's office when he was five days old, we were recommended to take him immediately to the pediatric unit at the hospital in Asheville. He had lost a pound and a half since birth and had a high bilirubin number (jaundice). As quickly as we could we left the Dr, went home and packed a week's worth of clothing, and said good-bye to Jaja, Timo and Mattias. It was a scary, confusing day. We didn't understand what was going on with Hawk's little body; we didn't know what to expect at the hospital; and we didn't want to leave our two older boys for days on end. Most of the hour's drive to the hospital I was frantically calling/texting our family and trying to take deep breaths to calm down.

When we arrived at the hospital we immediately walked right into our room (already assigned) and the nurses got to work settling us in. They were calm and friendly. Thankfully Hawk was pretty subdued and cooperative (we learned that high bilirubin often makes babies lethargic). He started on the UV light therapy bed that afternoon. It was SO hard to have him on that bed 24 hrs a day, which meant that we couldn't hold him (unless he was wrapped in the UV blankets, and then only for brief periods) or try to nurse him. The pediatric hospitalist and the feeding team (lactaction consultant and nutritionist) agreed that we needed to feed him with a bottle rather than nursing him, as it was clear that he hadn't been nursing properly and able to get enough milk, most likely because of the high palate in his mouth (fortunately not a cleft palate). However we were very thankful that he didn't have to be admitted to the NICU but just to a standard room, where Jim and I could also stay and sleep.

The priority while we were there was to get his bilirubin numbers down and get him eating enough that he would gain weight (and eat the appropriate amount at each feeding for his weight). It was a slow process on both accounts. He took to the bottle well (which meant I was spending a lot of time every day and night pumping milk, and with the stress my supply dwindled) but he was so tiny that he could only take small amounts at a time.

Meanwhile - and here was the unexpected good fortune of returning to the hospital - an array of doctors and specialists came to see Hawk every day, to assess his different physical needs: geneticist; pediatric orthopedic; physical therapist; occupational therapist; lactation consultant; nutritionist; and pediatrician. There was also a case manager from the hospital to help us understand the process and help us with health insurance and paperwork. Every morning the team of doctors and residents would also visit during their rounds. Every day was full and exhausting - and yet, we were very grateful. When he was born we knew Hawk would need extra care and eventually need to see all those specialists, but we didn't know when or how the process would get started. For one, we thought we'd have to wait several months before seeing the geneticist, but because we were back in the hospital, we saw him right away and started on the process of bloodwork to try and determine if he has an underlying condition that has caused the different physical problems in his extremities. To a person, the specialists were kind, gentle, patient, and willing to spend time with us answering questions (sometimes the same ones over and over).

From the geneticist and orthopedic we learned that Hawk's tightness is called "contractures", which means that in the womb he wasn't moving enough (the reason behind it is what we are still waiting on from genetic testing) and so he didn't develop his joints, tendons, and muscles properly. Starting now he needs therapy to help relax the contractures and gain that range of motion; to what extent that will be successful long-term we don't know - though already in the last three weeks he has improved, especially in his arms and neck. Hawk also had x-rays that revealed a dislocated left hip and vertical talus (ankle/heel malformation) in both feet. Learning that is what has led us already to start the corrective casts on his feet. We have to wait until at least 1 year old before any correction to his hip. His hands have what is called 'ulnar deviation' so it is a priority to get therapy to stretch the hands and develop them properly; it is uncertain what kind of facility he will have with his thumbs.

We had never bottle fed any of the three older children before, so this was a learning experience for both Jim and I!!

Carolyn, occupational therapist; fitting some soft splints on Hawk's hands to help stretch them out

Another wonderful thing of being in the hospital was the support that we received. We had visitors every day and more delicious food than we were able to eat while there!! (Which was good because boy was that hospital food terrible.)

Darryl (pastor at the church we attend) and Blake visited us one morning and brought us donuts and lunch from Trader Joe's

The best visitor was Grandpa!!!! It was a huge relief to have Dad drive out for a few days. He visited us in the hospital before going to our house in Sylva.

 

After nearly four days, Hawk's bilirubin was back to normal and he was drinking enough milk from the bottle that he had gained some ounces and we were released to go home. It was great to see him looking a bit more alert! One of the conditions for going home was that he have an NG tube (feeding tube) inserted, to pump in additional milk if he did not drink enough by bottle. Thankfully, after four days at home, we only needed to use it twice and he continued to eat more every day, so the pediatrician took it out at his 2 week appointment.

Two very attentive, gentle older brothers

A quiet moment with Grandpa

Still such a tiny squirt!

Ten days old! Grandpa headed home again, while Jaja stayed on another week.