Sadbh’s update – day 247

Sadbh had a very restless nights sleep, and was awake at 1:30, and again at 3:40. Fortunately the night nurse that was on shift is great and was able to take care of her, and got her back to sleep each time.

By 5:00, she was wide-awake and was very ready for breakfast. She didn’t have to wait long before Katie arrived on the scene and took care of business.

Sadbh had a great day and Katie’s mom came over just before noon to help my father manage trach care.

After Sadbh woke up from her nap, my father fed her a bottle and sweet potato, however something didn’t sit well so she puked it all up.

Since she had an empty belly, my father prepared some serial, which she devoured and ended up very happy.

I had a work Christmas Party to attend this evening, so it was getting close to Sadbh’s bedtime by the time I arrived home. Fortunately she was still awake and we got to cuddle and spend a little amount of time before she went to bed. I actually got to read her a bed time story, but I don’t think she was really that interested. Nevertheless, I was very happy to get to spend those few precious moments with her before it was time for bed.

I hope she has a better nights sleep tonight.

New photos.

Photos from October 14.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 246

Sadbh had a fantastic nights sleep and didn’t wake up until for food until 5:30am.

She did wake up with a coughing fit around 3am, however our nurse was able to suction her trach and got her back to sleep immediately.

We have been lucky to have the services of this particular nurse a few times since Sadbh has been home, however since she has a full time job at Children’s, we only get to see her once every couple of months.

Once Sadbh was awake, she was full of beans and had a huge smile on her face. According to the nurse, it sounded like Sadbh was full of beans throughout the night also, and was tooting non-stop for a while.

We were having issues with the battery charge on the oximeter over the past few days, and fortunately we received a replacement from the medical supply company last night. This allowed my father and the day nurse the opportunity to take Sadbh on a nice long walk today.

Sadbh was bundled up nice and snug in her hedgehog hat, warm jacket, and her new stroller fleece sleeping sack.

By the time I got home from work, Sadbh was waiting for me in her Grandfather’s arms by the back door and gave me the biggest smile ever.

After I had washed up, it was playtime on the couch for a while, until she was tired enough for us to start trach care.

Trach care went by quite easily as she hadn’t really slept since 11am, and by now it was 5pm, so it didn’t take long for her to fall into a deep sleep,

As soon as we were done with trach care, she decided that she had enough sleep and wanted to play some more. As soon as Katie arrived home, it was time for dinner.

Later, while we had our dinner, Sadbh bounced around in her brand new jump up seat and she was really enjoying herself.

We have another good nurse working tonight, so hopefully Sadbh will sleep well again.

New photos.

Photos from October 13.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 245

Sadbh’s night got off to a rocky start as soon as the night nurse arrived.

Within twenty minutes or so, Sadbh was wide awake and had broken free of her swaddle. Typically you can get Sadbh back to sleep very easily. As long as you act immediately, all you have to do is swaddle her back up, put her binky into her mouth and rub her head until she falls asleep.

Unfortunately, this particular nurse does not know how to swaddle Sadbh, nor does she know how to do anything else get her back to sleep.

Katie spent an hour or so with Sadbh until she finally went back to sleep.

At 1am, she was called down by the nurse so she could feed Sadbh, and again at 4am.

I suppose we are lucky that this nurse only covers one night shift, however, it does make for a tough start to the week.

I took over from the nurse at 6am, and what’s sad is that she even apologized to me and admitted that she is clueless when it comes to getting Sadbh back to sleep.

Sadbh slept for another hour and a half and when she woke up, she had the biggest smile, and was waving to me. As I approached, she started making this kissing sound with her mouth. It was so cute.

She had a fantastic day overall and even got to go out for a nice long walk with my father.

Tonight we have a nurse from Children’s hospital looking after Sadbh and since she has plenty of experience with young kids, I hope that Sadbh and Katie get a good night’s sleep.

New photos.

Photos from October 12.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 244

Sadbh had a restless sleep through the night, but did not awake until 5am. Katie did not sleep much, and was tucking Sadbh in throughout the night to make sure she slept as sound as possible.

After her 5am breakfast, she had her diaper changed and was back to sleep in no time.

Around 8am, she joined us in bed for a snuggle and a nap.

Sadbh went to mass at our local church with my father and Katie at 11am and it turns out that today’s mass was for the healing of the sick.

Additionally, since it was advent, the color of the priests vestments is purple, and coincidentally this was the color that Sadbh was wearing today, and she also had a nice cozy purple blanket that my aunt Josie made for her.

Sunday ended up being a very lazy day and Sadbh got to spend most of it playing and having fun.

New photos.

Photos from October 11.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 243

Sadbh had another tough nights sleep on Friday, however she joined us in bed around 5am and slept quite well from then on.

We had a busy day planned, so Katie and my father managed trach care earlier in the morning allowing us to free up the rest of the day to get things accomplished.

After Sadbh woke up from her nap, Katie secretly video recorded me on the baby monitor as I went to get Sadbh up and ready.

Peggy and Kirk came over with a Christmas tree ornament for Sadbh. At the same time, we received a package from Katie’s aunt Kathie in California, and it contained a delicate little bird ornament.

Sadbh loved it, and wanted to put it into her mouth, so we figured it would be best just to place it on the tree.

Just before Peggy and Kirk left, they sang the Hoki Poki for Sadbh, much to her amusement, and the amusement of the rest of us.

Later in the evening, we headed over to Greenlake to check out the Green Lake Pathway of Lights celebration. Unfortunately parking was hard to find, and since it was cold and damp out, we decided not to participate since we didn’t want Sadbh to get cold.

Afterwards, we meet up with some of the gang for dinner and Sadbh got to spend time with Dylan and Cormac.

Dylan has been walking for a month or so, and Sadbh was clearly impressed.

It got stressful a few times during dinner as Sadbh needed to be suctioned repeatedly, and her oximeter battery wouldn’t hold it’s charge, so we couldn’t see where her blood oxygen level was at.

Everything worked out fine, but it certainly makes dinner a little bit more exciting than usual.

By the time she arrived home, she was exhausted and was ready for bed.

A perfect ending to a perfect day, and not a bad way to spend her 8 month birthday!

New photos.

Photos from October 10.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 242

Thursday night was a rough night for Sadbh, but more so for Katie since Sadbh had to be re-swaddled and tucked back into her cot every 15 minutes or so

Around 1:30, Sadbh wanted to be fed, the restless sleep continued throughout the morning.

At 10:45, Sadbh had an appointment with Dr Cavanaugh, her Cranial Osteopathy therapist.

She was very fussy during the visit, however Dr. Cavanaugh carried on and was able to relieve some of the tension and pressure that he found on the right hand side of her neck and head.

He was very satisfied with her current condition and scheduled her next appointment for February.

Afterwards, Sadbh got to visit Katie’s office at Big Fish Games and got to meet a large group of Katie’s colleagues who have all been very supportive over the past 8 months.

When she got home, our friend Aoife and her son Conor stopped by for a visit and Sadbh got to hang out and play with Conor for quite some time.

Sadbh always has so much fun playing with her friends, we need to have play dates more often.

New photos.

Photos October 9.

Take care and have a great weekend,

Wayne, Katie and Sadbh.

Sadbh’s update – day 241

It’s amazing how well Sadbh sleeps when we have that one nurse on shift. She’s an expert in knowing how to keep Sadbh settled in, even if she get’s fussy throughout the night.

Sadbh slept great through the night and didn’t wake up until after 5:30 this morning.

Sadbh had another good day and got to head out for another walk around the neighborhood with my father and the day nurse.

Later on in the evening, after trach care, Katie was giving Sadbh a drink of water using a juice glass and you could see that Sadbh was using her tongue to lap up the water. It was one of the funniest things that I have ever seen her do, and she even thought it was quite funny.

Earlier in the day, Katie e-mailed me a video of Sadbh during her first week and it brought tears to my eyes.

It was recorded in the NICU at Children’s Hospital after Sadbh had been extubated and was breathing with the aid of a high flow nasal cannula.

You could see how she struggled to breath and how her chest cavity compressed so deep while trying to fill her lungs with oxygen.

Not long after that video was taken, she had to be reintubated as she was losing energy and her body was starving of oxygen.

Even though this video was taken almost eight months ago, it almost seems like it happened yesterday. That said, it’s amazing how far she has come and how much stronger she is today.

New photos.

Photos from October 8.

Take care,

Wayne, Katie and Sadbh.