Sadbh’s update – day 203 Halloween

Sadbh finally settled into sleep and had a somewhat decent nights sleep.

She did wake around 3:45 for a feed, and was back to sleep within an hour.

I came down to take over from her nurse a little before 6am and found the nurse sleeping in the arm chair. She was completely groggy when she woke up so I figured it would be better to wait until her next shift to discuss it.

Sadbh slept until 7am and woke up with her usual big smile. I disconnected her from all the equipment, replaced her trach guard with a nose and brought her up to Katie for breakfast. It was dark in the room when I placed her in the bed and she was reluctant to leave my side, that was until Katie woke up and started chatting with her.

After breakfast, it was time to head back down stairs for a burp and more importantly, a diaper change.

Despite not having had a poo in two days, Sadbh’s diaper was only wet.

As soon as I had her changed and in nice warm bed clothes, I heard two days worth of rumbling and next thing I knew, the aroma in the room changed from a pleasant smell of fresh baby to the fetid hum of two day old digested food. Fortunately, it was an easy clean up and Sadbh’s smile make it very bearable. I was also very relieved that she had finally been able to take care of business and would now feel much better.

We had about twenty minutes of play time in her cot with an assortment of her toys and then it was back into a deep slumber for another hour.

Despite having a short sleep, Sadbh was in great spirits when she woke up and was also quite hungry. A quick feed, diaper change and a manly burp, it was time to get out of her sleeping attire and dressed for play time.

Before I knew it, I heard a man sized breaking of the wind, and it didn’t come from me, or my father. And judging by the look of relief on Sadbh’s face, I instantly knew that I was in for one serious clean up.

The end result required two of us to clean up the mess and even I needed a change of clothes afterwards.

As soon as she was cleaned up and in fresh clothes, she was ready for more fun and games and it was another hour before she was ready for sleep.

She even got a chance to Skype with my sister in New Zealand.

Sadbh usually sleeps for an hour or so every couple of hours, however today she switched things up on us and her late morning snooze lasted two hours. In fact, she was in a very deep for most of those two hours.

This made trach care very difficult when it came time. She seemed to be in a nice deep sleep, however as soon as my father had the trach ties removed and had begun cleaning, she woke up and got extremely anxious. Her heart rate shot up between 170 and 195 and she was very upset.

I did my best to keep her as calm as possible, while my father had to rush through each step so he could get the new trach ties on and secured.

It was quite the ordeal, however he did a great job and Sadbh, who was by now exhausted, fell into a deep two-hour sleep.

As soon as Katie arrived home, Sadbh, almost sensing her arrival, awoke and it was dinnertime.

Right after dinner it was time to dress Sadbh up in her Halloween costume, a traditional Bavarian dress.

She looked so cute and adorable, however she noticed Waldo (Aka: Wally back home) and became very distressed. I have a feeling it might have brought back memories of her stay at Children’s Hospital.

New photos.

Photos from August 31.

All the best and Happy Halloween!!

Wayne, Katie and Sadbh.

Sadbh’s update – day 202

We woke up at 6am this morning to discover that Sadbh’s trach collar humidifier was not switched on and her trach was very dry.

With all the equipment needed to keep Sadbh’s trach from drying out, something is bound to go wrong and unfortunately, thinking that I was turning it on, I actually switched off the humidifier moments after Katie had switched it on.

Despite sounding very dry, she was quite happy and did not seem to be under distress.

We worked hard to humidify her trach and get her comfortable again.

By the time we succeeded, both Katie and I were exhausted, completely stressed out and obviously felt terrible that we let this happen.

My father took the lead on managing trach care today, and he did a fantastic job. I was extremely impressed on how thorough he was when cleaning, and also how confident he was.

Sadbh is one lucky girl to have such an amazing grandfather.

By the time she was ready for bed, she seemed to be extremely tired, however it took forever to get her to settle down and off to sleep. Even after falling asleep, Sadbh was very restless and kept waking up crying.

She hasn’t had a poo in a couple of days, and we think she might be constipated. Plenty of farts, but that’s about all.

We did try giving her “gripe water” which is supposed to help, so fingers crossed we will have a more comfortable baby within a few hours.

New photos.

Photos from August 30.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 201

Saturday was a fantastic day for Sadbh.

Her day started off with breakfast in bed, followed by her ritual burp and diaper change and a whole lot of cuddles.

After a nice relaxing morning, we headed off to Woodland Park Zoo since the weather was fantastic and we figured that Sadbh might enjoy checking out some of the animals.

Compared to our visit in August, she was definitely more aware of her surroundings this time around. The sounds of the vultures and even the jaguar drew her attention immediately and she seemed to be very interested in what was going on.

It was also very cute to see all the little kids in their Halloween costumes.

It was a wonderful way to spend the day and we even bumped into two different sets of friends who had not yet met Sadbh.

By the time we got home from the Zoo, Sadbh was quite tired and this allowed us to manage trach care without much difficulty.

For dinner, Katie and I ran out to pick up some take out and realized that it was the first time both of us had a chance to leave Sadbh at home while we went out, despite the fact that we were only out for a very short amount of time.

We are so grateful that my father is here and able to look after our little girl.

New photos.

Photos from August 29.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 200

Sadbh had a good nights sleep on Thursday and slept until 6am.

After Sadbh’s breakfast, both she and Katie went back to bed for another few hours.

Ali-Baba came over and Sadbh showed her how good she is at rolling.

After playing for a while, it was time for trach care, so Katie and her mom gave my father a break and took care of business.

Later in the evening we headed out to Paddy Coyne’s Irish pub to meet up with our friends who gathered to see Barry before he heads back to Australia on Saturday.

We packed out the upstairs section with strollers and kids

It was great catching up with everyone and Sadbh had so much fun.

Before long, it was time to head home as we were quickly approaching Sadbh’s bedtime.

New photos.

Photos from August 28.

Have a great weekend,

Wayne, Katie and Sadbh.

Sadbh’s update – day 199

Sadbh had another restless nights sleep, despite being very gassy, she did sleep until 6am.

She had a great day with Granddad and went for nice long walk through the neighborhood.

Ever since she left Children’s Hospital, Sadbh has always loved the trees in our back yard and in our neighborhood. She finds them very calming and we find it’s a great way to soothe her when she’s upset.

With the vibrant colors of autumn, she appears to be even more captivated.

When it came time for trach care, Sadbh was very tired and it did not take long for her to fall into a nice deep sleep.

With my father holding the trach in place, I removed the trach ties and Polymem dressing and started to clean around her stoma.

By now she was in a deep sleep, however she grew very restless and started to kick and lurch. Her sudden jolt backwards almost resulted in the removal of her trach from her airway.

My hearth jumped out of my mouth and if it wasn’t for my father’s quick reaction, we would have had an emergency on our hands. Thank you dad!!

New photos.

Photos from August 27.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 198

Sadbh was awake again this morning around 2:30am and according to our nurse, she had a lot of gas throughout the night and suffered quite a bit of discomfort.

Usually when Sadbh is fed by either myself or my father, we will open her window blinds so she can look into the garden at the lush trees and vegetation as she is fed.

This morning when she looked out the window, she was met with a surprise, there was a bird scarecrow outside looking in.

I wonder if Ali-Baba had anything to do with this scarecrow….  

Since we had not heard back from the agency regarding nurse coverage for tonight, I had to follow up with them a couple of times today.

They finally got someone to cover the shift, however both Katie and I feel bad since it’s our nurse that only works two nights a week since she’s got two kids, and she has already worked both nights this week.

Katie followed up with the agency supervisor to let him know how bad things have been recently and yet again we received the same old story.

I’ve said it before and I’ll say it again, Sadbh’s vocal cord issue is so much easier to deal with that dealing with the nursing agency.

Sadbh had a great day today and got to Skype with my family back in Cork, and with my sister in Tauranga in New Zealand.

We gave her a break from solid food today since she’s been having such issues discomfort due to gas.

It’s probably a good thing as it will let us air out the house a little bit also.

New photos.

Photos from August 26.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 197

Sadbh slept so much better last night than the night prior.

It has to be the night nurse, Sadbh slept great and did not wake up until 6am this morning.

It goes to show that you can’t beat having a nurse who is mother to a baby only a couple of days younger than Sadbh. Too bad for us that she does not work more than two nights a week.

We are still having issues filling all the night shifts and our representative at the agency seems to have a difficult time just keeping us updated on the schedule.

After constant pestering, it’s now looking like we will not have a nurse for tomorrow night.  

Sadbh had a great day and since the weather was so nice, she got to go out for a nice walk through the neighborhood.

Typically we give Sadbh her homeopathic remedy “phosphorus” by mouth while she is having her bath. Its in liquid form and is delivered by using a medicine dropper.

She never seems to fuss and usually likes it.

As I gave her a bath today, my father was standing directly behind getting her remedy ready and Sadbh almost got whiplash trying to get at the remedy.

She knew exactly what he was doing, even though she could not see him.

It was quite funny to watch and also amazing to see how clued in she is as to what’s going on around her.

Trach care started off quite well as Sadbh was in a deep sleep. Everything went great until I was trying to secure her new trach ties and for some reason it was proving to be more difficult than usual.

One side of the trach tie seemed to be twisting over on itself, and just as I was about to undo everything to start again, her eyes shot open and her heart rate jumped up to her usual awake heart rate.

I tried to coax her back to sleep, however this proved futile. Realizing that she was not going to go back to sleep, I had to work fast to get her trach ties secured as they were.

Thankfully she did not get fussy and allowed me to finish up.

Later in the evening while I was cooking dinner, Katie and my father were playing with Sadbh on her floor mat and they were working on crawling and rolling over.

It’s starting to pay off as Sadbh has started to roll from her back over to her belly, and back again.

We are going to be chasing her around the house in no time.

New photos.

Photos from August 25.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 196

Sadbh was wide-awake by 3:30am this morning and it took a while to get her back to sleep.

I took over from the night nurse at 6am and Sadbh seemed to be in a comfortable sleep and slept soundly until 7:30.

All in all, Sadbh had a lovely day and got to spend a lot of time playing on her floor mat and practicing crawling.

She’s really coming along well and building up her leg strength. However there is a part of us thinking that we might be better off waiting a little longer before we teach our little girl how to crawl.

New photos.

Photos from August 24.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 195

Sadbh had an excellent nights sleep and awoke cheerful and happy on Sunday morning.

I was in a deep sleep when Sadbh was having her breakfast, and I opened my eyes to see this gorgeous smiling baby looking right at me.

Later in the morning Katie and Sadbh met with a potential nurse nanny that would be hired independent of the nursing agency to help out when needed.

Katie was well impressed and has already scheduled an evening for her to watch Sadbh.

The weather had improved dramatically since yesterday so my father bundled Sadbh up in warm clothes and brought her for a walk around the garden to check out all the vibrant autumn colors.

Later in the day, Sophie and her son Felix stopped by for a visit and Felix got to play with Sadbh. He is such a great little guy and was very caring towards Sadbh. I was seriously impressed and I think Sophie is very fortunate to have such a great child.

Our friend Barry came by for dinner tonight since he is in town on a business trip from Sydney Australia.

It’s incredible the difference in Sadbh since Barry was last here and how she is advancing in development.

For dinner, Sadbh had and loved pureed sweet potatoes that Katie prepared for her. It was quite messy, but it’s good to see that she’s getting comfortable eating solids and is also enjoying it.

New photos.

Photos from August 23.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 194

The weather on Saturday was terrible, however it gave us a great excuse to stay in and relax all day.

Sadbh had an excellent day lounging around the house and got to Skype with her cousins Hayato and Kaito in Portland.

Later in the evening, our friend Neil stopped by and got to hold Sadbh for a while.

Neil is not very comfortable with kids so it was quite the accomplishment handing Sadbh off to Neil to hold.

Initially, neither one of them seemed comfortable with the idea, however they both relaxed and in no time were enjoying each other’s company.

New photos.

Photos from August 22.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 193

Sadbh had a restless night sleep was awake by 4am Friday morning and was very hungry. After her first feed of the day, she went back to sleep for another three hours.

She had a great morning with Katie and both got to sleep in and relax.

Early in the afternoon, after my father headed to Children’s for his second and final training on trach care and CPR, Katie determined that it was a good time to change out Sadbh’s trach since Sadbh had been awake for quite some time and was ready for her afternoon nap.

It was a stressful task, however everything went extremely well. This was a first for Peggy, and it was also the first time for Katie to insert the new trach. 

Even Sadbh didn’t seem to be bothered.

Thankfully for us, we manage Trach Change once a month. For some, it’s carried out every couple of days and I cannot imagine the stress it adds to these unfortunate peoples lives. For us, both Katie and I manage our stress very differently.

We both seem to maintain a low stress composure during trach care and ultimately throughout the task of trach change. However it’s after we have completed the entire task and after Sadbh is put to bed when the signs of stress show.

Katie tends to get emotional and reflects on Sadbh’s vocal cord issue, while I tend to get very angry and end up resenting this entire situation.

Later in the evening, Katie headed out to meet a few of our friends for dinner, and I headed out with Sadbh and my father to meet Gerry and his son Dylan for something to eat at a local kid friendly ale house.

Just before we left to meet Gerry, we had to change Sadbh’s diaper, and I was shocked of what I found in there. Since she has been eating solids more frequently now, specifically bananas, the contents of her diaper were so foul and pungent.

I wanted to take a photo for the record, however Katie sensibilities overruled mine so Sadbh will be saved the embarrassing reminder.

Once Sadbh was all cleaned up and dressed to go out, we headed off.

The Madrona Ale House is famous for being kid friendly, however when we got there, it was very obvious that adults were greatly outnumbered by kids.

So much so, it was hard for Sadbh to sleep and relax, so needless to say, she did not have a good time and demanded constant attention.

Ordinarily this is not an issue, however when you are trying to eat, it can be difficult.

It was great to see Dylan as we had not seen him in such a long time. We were very impressed on how much he has grown.

By the time we got home, Sadbh was very tired so we cleaned her up, dressed her for bed and once her little head hit her mattress, she was out like a light.

New photos.

Photos from August 21.

Have a great weekend,

Wayne, Katie and Sadbh.

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.