Sadbh’s update – day 192

Sadbh slept like a log right through the night and woke up at 6:30 for a quick breakfast.

All in all, she had a fairly lazy day and since the weather wasn’t great, she stayed indoors.

Ali-Baba stopped by for a while to spend time with Sadbh and my father and she got to play with Sadbh for ages.

By the time I got home, Sadbh was wiped out and was starting to get very cranky. It was time for trach care.

When she’s really tired, she gets this faint red unibrow and she also ends up rubbing her eyes continuously.

She fell into a deep sleep and slept for an hour and a half. Even when she woke up, she was still extremely tired. Since it was still very early in the evening, and we did not want her to go to bed so soon, she had a tough time trying to stay awake.

Eventually we brought her upstairs to bed and she was out in no time.

Tomorrow is going to be a busy day as my father and a few of our friends will be heading to Children’s for their second session in trach care and infant CPR.

Katie and her mother will be changing Sadbh’s trach. This is a first for Peggy and I am sure she is extremely nervous.

Katie has been there through all the previous trach changes and has removed the old one each time, however this will be the first time for inserting the new trach.

New photos.

Photos from August 20.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 191

Sadbh had another great nights sleep and did not wake up until 6:30.

Overall she had a great day and got to spend a lot of time practicing her tummy time and working on her crawling.

Making the most of a nice autumn day, my father and the nurse took her for a walk up towards Capitol Hill and Sadbh did not miss a beat. She was awake for the whole trip and by the time I got home, she was extremely tired.

This worked out quite well for trach care. By the time she was done with her bath and was wrapped up in her swaddle like a burrito, she was in such a deep sleep, it made trach care very easy.

Our nursing agency dropped the ball again today. They supposedly had a nurse set up to cover tonight, however the nurse they had planned on covering had already worked two nights straight and had not planned on working a third night in a row. Since this nurse has a baby two days younger than Sadbh, we completely understand why she does not wish to work more than two nights a week and feel let down that the agency had not figured out another nurse to cover the other nights.

On the positive side, Sadbh get’s to sleep with us tonight which is more desirable after all is said and done.

By the time she was ready to go to sleep, she was exhausted and very fussy. As soon as we walked into our room, she started to smile as she knew she was going to be spending the night with us in our room.

New photos.

Photos from August 19.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 190

Sadbh had an excellent nights sleep and did not wake up until 6am. She was quite restless for the last hour or so, however the night nurse did a great job of keeping her bundled and content for as long as possible.

Her morning was spent playing with Granddad and spending time working on crawling and practicing tummy time. She also got to Skype with my mother and family back home in Cork.

During lunch, Katie arrived home with one of her colleagues Carey, much to Sadbh’s delight.

Sadbh is so friendly and social and took to Carey straight away.

Trach care was very straight forward this evening and Sadbh was in a very deep sleep throughout. Moments after we were done, she woke up and wanted to play rather than spend any more time in bed.

Sometimes she makes things so easy.

Before dinner, Katie tried out the Passy Muir valve for almost ten minutes. Sadbh managed quite well and only got fussy towards the end. Her fussiness was more to do with being tired rather than dealing with the valve, however it seemed like a good time to switch it out for her artificial nose for her trach.

Rather than feeding Sadbh pureed fruit with her spoon, Katie tried feeding her little chunks of mashed banana with her finger and Sadbh couldn’t get enough. She certainly has my patience as a couple of times she couldn’t wait to get another finger full so she went right to the source and tried to eat the banana that Katie was holding in her other hand.

It was all very cute and also quite messy.

New photos.

Photos from August 18.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 189

Sadbh had a restless nights sleep and was awake by 3:30am. It took Katie an hour and a half to get her back to sleep.

I took over from the night nurse at 6am and Sadbh slept soundly until 7. When she awoke, she had the biggest smile and it seriously warmed my heart.

Sadbh is starting to take hold of the bottle when we feed her and is becoming more in control of her food intake. Obviously she still has a ways to go before she can totally feed herself, but she’s showing great improvements with her hand control.

My father has started to manage suctioning when needed, since he has now gone through his first training classes at Children’s. It has definitely proved to be very helpful when caring for Sadbh, and I have to admit that he’s picking it up really quickly.

We tested out the Passy Muir valve a couple of times and each time she handled it very well. At one point she had a nice big sneeze and since the valve forces her exhaled air up through her nose and mouth, she sneezed through her nose.

This was a first and it caught both my father and I off guard.

My mother had sent over a lovely dress for Sadbh a couple of months ago and today we took a series of photos with her modeling it. In an effort to get her to look directly at the camera, I had to hold Cookie Monster right above the lens and then get him talking.

It was a great deal of fun and Sadbh was a super star.

All the photos turned out great and she looked absolutely gorgeous.

After trach care, Sadbh had a nice long sleep and once she woke up, we headed out for a walk up to Seattle University’s campus.

It was a beautiful evening and Sadbh did not want to miss a single thing.

Even after we got home, it was another 3 hours before she was ready for sleep.

It was such a fantastic day hanging out with my little girl, I could be seriously tempted to quit my job and be a stay at home dad.

New photos.

Photos from August 17.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 188

Sadbh had a fantastic nights sleep and didn’t wake up until after 6am, much to the delight of mummy and daddy.

After breakfast, a burp and a diaper change, Sadbh was back to sleep for another three hours. What an angel.

After her second breakfast, we got to play and snuggle for a while.

At one pint, while I was posting Saturday’s blog, Sadbh was trying desperately to get a hold of my laptop. On a couple of occasions, she reached out and crawled up over the comforter and grabbed onto the laptop.

All the paying around made Sadbh very tired and when she was ready to go to sleep, Katie and my father managed trach care.

Afterwards, she had a good sleep and when she woke up, we all headed off to Greenlake for a walk around the lake.

It was a beautiful autumn day and the weather was perfect for a stroll around the lake.

Sadbh was awake the whole time and appeared to enjoy the walk. Greenlake is a beautiful park in Seattle, and it’s especially wonderful on a nice sunny autumn day.

By the time Sadbh got home, she was extremely tired however since she was overly tired, it took a while to get her to sleep. Once she finally nodded off, she fell into a deep sleep in no time.

About an hour or so after she fell asleep, Katie noticed that Sadbh was crying her head off, despite the fact she was still in a deep sleep. We have heard about babies having night terrors, and hope that she does not have these too often.

New photos.

Photos from August 16.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 187

Saturday morning was very relaxing and we got to snuggle with Sadbh.

The rest of the day was quite busy for Katie, my father and I as we had to prepare the boat for winter storage, so Sadbh got to hang out with Ali-Baba and Kirk at their house.

Katie’s step-sister Aleta and her baby son Evann had also stopped by and got to hang out.

It was a hectic day and by the time we were finished with the boat, it was getting late and we had decided after inspecting Sadbh’s trach ties and the stoma site that we could skip trach care for the day.

After we got home, Sadbh had her evening meal and before too long, she was fast asleep in her bed.

New photos.

Photos from August 15.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 186

I think Katie’s favorite day of the week has to be Friday, especially the morning. This is the first morning of the weekend that she gets to sleep in and snuggle with Sadbh.

Later in the morning, Katie and Sadbh Skyped with Carina and Nini in Munich and had a nice long conversation.

We had a potential nurse stop by to meet Sadbh and Katie today, and despite being very qualified, she is only available one day a week.

Yet again our nursing agency has let us down. We have explained over and over that we are looking for full time day and night nurses and after six weeks of getting the run around, their only candidate is only available for one day per week.

Our rep at the agency even admitted that they do not pay enough to attract the type of nurses that we require. This was a very scary revelation.

The frustration continues.

Today was the first of two training sessions at Children’s Hospital for my father and four of our friends. They met with Jackie, our Respiratory Therapist, to learn how to manage trach care including suctioning, daily cleaning and even trach changing.

We are so fortunate to have such great friends willing to learn and to help out. 

Thanks Derek, Suzie, Lydia, Theresa and obviously my father.

New photos.

Photos from August 14.

Have a wonderful weekend,

Wayne, Katie and Sadbh.