Sadbh’s update – day 233

Sadbh had another great nights sleep and didn’t wake until 5am.

After being cooped up in the house for the last couple of days, Sadbh finally got to go out for a walk with her Granddad and the nurse today.

It was a dry, but cold day, so Granddad made sure that Sadbh was bundled up nice and warm.

I had a work party downtown tonight, but I had to head home first to manage trach care.

As soon as I got home, I was greeted by a very happy, and not so tired baby, so I figured that there was a very slim chance that I would be able to get trach care done in time to make the event.

Sadbh was in great form and was in a very playful mood, so I didn’t mind spending the evening with my little girl.

Before too long, she was showing signs of exhaustion, so we filled her bath and got her ready for trach care.

I’ve never seen Sadbh fall asleep so quickly and before we knew it, trach care was done and Sadbh was in a deep sleep in her cot.

It was getting close to 6pm so I knew the pressure was on to get downtown and meet up with my colleagues for an hour or so, and then make it back before Sadbh’s bed time at 8.

Everything worked out perfectly and I actually got to spend 30 minutes or so with her before she went to bed.

Katie’s cousin Scott and his wife Kathy sent us a gift of a ukulele, and the look on Sadbh’s face when she seen it was impressive. For the record, I cannot play the ukulele, however when I started to strum its strings, her eyes lit up and you could tell that she was memorized, she even mimicked my strumming.

Tonight, Katie fed Sadbh her first Baby Mum-Mum biscuit and despite being full of sugar, Sadbh loved it.

That said, of all the solid foods that we have fed her so far, avocado is by far her favorite.

Dr. Inglis responded to our e-mail regarding hearing Sadbh’s voice during our recent trach change on the 19^th, and even though he was excited with the news, explained that this is normal and should be expected.

We are still optimistic that her vocal cords will heal by themselves eventually, and regardless of how long, we are in it for the long haul.

We have noticed that Sadbh has been improving her crawling skills over the last few days, however she seems to crawl backwards rather than forwards.

I’ve heard that this is quite normal, but it sure looks funny when she ends up backing away from her binky or cookie and ends up under the couch.

New photos.

Photos from September 30.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 232

Sadbh had a fantastic night sleep. She slept from 8pm last night, until 6am this morning.

According to her night nurse, her blood oxygen level was 100 all night, and she did not need to be suctioned whatsoever.

At 6am, Katie was called down to feed Sadbh and by 7, Sadbh was back in a nice deep sleep.

She had an excellent day with Granddad and by the time I got home from work, Sadbh was exhausted and ready for trach care.

As soon as she was done with her bath, Granddad dried her off and got her into a nice clean gown, and within moments she was on her way into a nice deep sleep.

Trach care was fairly straight forward, and we were able to get it done without any issues.

That’s one of the benefits of having an oximeter with a heart rate display, you can easily tell what stage of sleep she is in at any given time. This allows us to know when to, and when not to work on Sadbh’s trach and neck.

Unfortunately her deep sleep was short lived and within no time, Sadbh was awake and ready for dinner.

By now, Katie was on her way home from work, so I decided to hold off on heating up a bottle and figured that Sadbh would probably prefer bonding with her mom rather than with a bottle.

Since she was so hungry, I heated up some sweet potato and tried to feed her, however she wasn’t having any of it.

Since she was so upset, it took a lot of distracting to keep her calm until Katie arrived home, and as soon as the front door opened, Sadbh almost jumped right out of my arms.

The rest of the evening was spent playing with each of us, and when it came close to bedtime, poor little Sadbh was exhausted and ready for sleep.

She was very upset when I started to change her into her bedclothes, but by the time I had her swaddled and got her into my arms, her eyes shut closed and she was out for the count.

I’m hoping that she has another good nights sleep.

New photos.

Photos from September 29.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 231

Sadbh woke up very early for breakfast this morning. 

Katie was called down at 2:30am by the night nurse and as soon as she arrived down stairs, she was greeted by a sad little girl.

Often when Sadbh wakes up during the night, she appears to be confused when met by the nurse and not one of her parents.

However, as soon as Katie arrives in the room, Sadbh immediately get’s very excited and shows her delight with a big smile.

This morning was no exception.

Before taking her out of her cot, Katie unhooked all her equipment so she could feed her easily.

As soon as she picked her up, Sadbh started to cough hard and appeared to struggle with her breathing.

Katie placed her back into her cot and hooked up her oximeter to get a reading and immediately noticed that blood oxygen level had dropped well below 90%.

She quickly suctioned her trach and her blood oxygen shot back up to 100.

Unfortunately this caused our nurse to panic, however Katie remained calm and was able to take control of the situation.

Since Sadbh was feeling much better, Katie removed her from her cot, this time with all her equipment attached, and breakfast was served.

Afterwards, Katie and Sadbh snuggled for a while and by 3:45am Sadbh was back in her cot, fast asleep.

At 6am, it was my turn to take over, and I arrived downstairs to find Sadbh fast asleep with her arms out of her swaddle and up by her head.

She looked adorable and I was surprised that she hadn’t woken herself up with the occasional flailing around.

She slept for another 40 minutes, and as soon as she woke up, I brought her up to Katie for her second breakfast.

Since both ladies looked so comfortable, I decided to jump into bed and cuddle up next to Sadbh. Before I knew it, all three of us were asleep and I must admit, even though it was a short sleep, it was the best sleep I had gotten all night.

Sadbh slept on for another hour and a half before she was ready for her next feeding.

Sadbh is crazy about tags. Clothing tags, tags on her animals, on the underside of her play mats. If there is a tag on something, Sadbh will find it and before you know it, she will be sucking on it.

Today had to be the funniest tag find of all. She has this lovely stuffed raccoon that she received as a gift from Katie’s friend Christina in NY, and it’s got a tag that’s in the most awkward of places, right between it’s hind legs. And unfortunately Sadbh found it.

I’m going to have to remove that tag, just so people don’t get the wrong idea.

Later in the evening, Lydia stopped by and got to spend time with Sadbh. At one point, Lydia was waving across the room at Sadbh and Sadbh started to wave back.

Her development is improving every day.

Shortly afterwards, Katie arrived home to a very happy baby. She had been awake for most of the evening and despite being tired, was excited to see her mummy.

Katie had a call with the respiratory therapist at Children’s today to discuss the issue with Sadbh’s dry airway throughout the night and the issue with her thick secretions, and they indicated that we should raise the temperature settings for her humidifier to see if that helps with the situation.

They also confirmed that we could start using humidifiers throughout the house, as long as we sanitize them on a daily basis.

It is critical to keep these humidifiers sanitized as we need to prevent any bacterial contamination and infections.

New photos.

Photos from September 28.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 230

Sadbh had a great night’s sleep last night and woke up for breakfast around 5am Sunday morning. After breakfast and a quick diaper change, she was back to sleep in no time.

Katie’s next wake up call was at 8am, and this time around, Sadbh was ready for some playtime.

The weather was terrible, so it was a great excuse to stay in bed and have as much fun with Sadbh as possible.

Even when it was time for her next nap, she was too excited and didn’t sleep for more than ten minutes.

At first we noticed one little arm poking out of her swaddle, then she had both arms out and was playing with all her toys.

We both feel that her days of swaddling are almost over, so we must work on weaning her away from being swaddled.

This is obviously going to be difficult, since keeping her swaddled helps us to keep her mist collar in place so her airway doesn’t dry out so quickly.

She wasn’t ready for her early evening nap today, and was quite certain that she wanted to play for longer, despite appearing to be very tired.

In fact, she was determined to stay up as long as she could, and managed until 8pm, which is her usual time to go to bed.

Since our nurse coverage starts up again tonight, I had earlier moved all her equipment down from our bedroom and as soon as she started to get fussy, I brought her in and got her ready for bed. It was quite the ordeal, one second she was happy and laughing, the next she was crying her eyes out, all without a sound. It was very obvious that she was exhausted and quite delirious.

Once Katie popped her head in the door, Sadbh was all smiles and ready for her bedtime cuddle.

As soon as Katie was done and had her swaddled, Sadbh was out like a light.

Hopefully she will rest soundly through the night.

New photos.

Photos from September 27.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 229

Sadbh slept quite well through Friday night and did not need suctioning until around 4am Saturday morning. By then her airway was very dry and I spent a good 45 minutes or so dropping in saline and suctioning out dried secretions.

Eventually I was successful in clearing her airway, and her breathing sounded much more relaxed.

Later on I awoke to Sadbh tapping me on my forehead, and when I opened my eyes, Sadbh was inches away with a huge smile on her face.

I love waking up to Sadbh’s big smile.

We had a lazy start to the day and when she was ready for her next nap, we were able to manage her trach care.

Later in the morning, Katie’s mum came by to spend time with Sadbh.

Sadbh had just woken up from her nap and was very happy to see Ali-Baba.

After Ali-Baba left, we all headed downtown to check out the Christmas lights.

Seattle was packed with shoppers and Sadbh didn’t miss a beat.

The holiday lights, sounds of the buskers, and the throngs of shoppers were fascinating to Sadbh.

On our way home from downtown, we decided to stop off at Smith on Capitol Hill for a quick bite to eat.

Smith has a large assortment of birds on display on one of the walls, and Sadbh was quite intrigued.

It reminded Katie and I of when we were in Smith with Clodagh when she was around 12 months old and all the birds were fascinating to her also.   

Once we got home, we got Sadbh all cleaned up and ready for bed.

In the last week or so, Sadbh has started making this sucking noise with her mouth, almost like blowing a raspberry. It’s terribly cute and we also know that it’s an important part of her speech development.

Since it was still a little early, we headed down to the basement and played on the floor mat for a while watching Sadbh reaching for some of her toys, especially one of the cookies from her Cookie Monster toy.

New photos.

Photos from September 26.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 228

Despite being on a humidifier mist collar while she sleeps, Sadbh’s trach often dries out and as a result she starts to cough. We are not sure why her airway dries out since all the equipment settings are correct, however when it does happen, we have to add saline drops into her trach to loosen up any dried secretions and then suction to clear out the trach.

Since it was quite late before Sadbh went to sleep on Thursday night, she slept very well throughout the night and did not wake up until shortly after 4am.

A representative from our nursing agency stopped by at noon to recertify Sadbh for nurse care coverage and to review our current care coverage.

Shortly after she left, it was time for trach care and Sadbh made it easy since she was so tired and in need of a nap.

It was a lovely day, so after Sadbh’s nap, we went for a nice long walk around Seward Park.

When we arrived home, it was time to Skype with Katie’s sister and kids in Portland.

Sadbh had a great time and when Kristi started playing a clapping game with her, she was only too happy to play along and clap along.

Every day there is something new and it’s fascinating to see her develop and learn.

New photos.

Photos from September 25.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 227

I suppose Sadbh’s current normal sleeping pattern is slightly restless, with coughing that requires suctioning.

She had another one of those nights and since she was sleeping upstairs with us, we were busy making sure her airway was clear throughout the night.

Thursday morning was very nice as we got to snuggle with Sadbh and she even got to sleep with both of us for an hour or so.

We were hosting Thanksgiving dinner for a few family and friends so after Sadbh went to bed Wednesday night, we got busy rearranging the furniture in the house so we could seat 15 adults and 7 kids.

When we brought Sadbh downstairs in the morning, she had a look of confusion on her face since everything was switched around.

In between preparing for dinner, Sadbh got to Skype with my brother back in Ireland and she showed off her favorite toy, the Cookie Monster, that he had send to her.

Shortly after three, our friends started to arrive and Sadbh was delighted as she now had a bunch of friends to play with.

Dinner was great and in the tradition of Thanksgiving, I made a toast giving thanks to all the love and support that we had received from all our family and friends since Sadbh was born. I also toasted my father who has sacrificed so much to come over here and spend all his time away from my mother to help out Sadbh. We are so fortunate.

Sadbh was having too much fun and didn’t go to sleep until after everyone had left, which was at least 4 hours after her regular bedtime.

She can be quite the party animal.

New photos.

Photos from September 24.

Happy Thanksgiving,

Wayne, Katie and Sadbh. 

Sadbh’s update – day 226

Sadbh had a great nights sleep and did not fuss too much.

Around 4am, when she started to stir for her morning breakfast, our nurse noticed that she needed suctioning. She called Katie down and shortly afterwards, Sadbh started to get extremely fussy and according to her oximeter, her blood oxygen level dropped quite low sounding the alarm.

Our nurse got very concerned and got the oxygen mask out and was ready to attach it to Sadbh’s trach.

What she didn’t realize is that since Sadbh was so fussy, and that she was kicking up a storm, her oximeter probe was not picking up a correct blood oxygen reading.

Once Katie arrived on the scene, she was able to assure the nurse that Sadbh was fine and that it was the oximeter that was at fault.

It’s only through experience that we understand that the oximeter can pick up an incorrect reading and we felt terrible that the nurse got such a fright.

Considering the circumstances, she reacted in the correct way, and now has a better understanding of the oximeter.

The rest of the day went really well for Sadbh, however at one point she pulled her trach nose off and was about to put it in her mouth before my father caught her. I fear that this is a sign of things to come.

Trach care went really well today and she even slept for another thirty minutes or so afterwards.

As soon as she woke up, I loosened up her swaddle, but left her lying in her cot and when I checked in a moment or two later, I found her playing with her trach mist collar and the hose.

We have heard that it’s around this age where babies start find the one thing that brings them comfort, be it a blanket, or stuffed toy. For Sadbh I think it’s going to be one of the many pieces of medical equipment that she uses daily.

Since it’s Thanksgiving weekend here, we have decided to do without nurse care until Sunday night, and as a result, we moved Sadbh upstairs to our room for the weekend.

As you can imagine, we are all looking forward to the sleep ins and cuddles. All but my father, as that might create an uncomfortable situation.

New photos.

Photos from September 23.

Happy Thanksgiving!

Wayne, Katie and Sadbh.

Sadbh’s update – day 225

Sadbh’s night started off quite restless and her heart rate dropped numerous times causing the oximeter to alarm each time.

Eventually she settled in and slept fairly peacefully until she woke up for breakfast at 5:30.

At one stage through the night, the nurse had to suction Sadbh’s trach and she pulled out a huge mucus plug that was larger than anything that she had seen.

Our current day nurse in away on vacation, and we were fortunate to get one of our nurses from the summer to cover her shift this week.

It was great to see her again, and she was seriously impressed with how Sadbh had grown and developed since she last seen her in August.

As soon as I walked in the door from work this evening, I was greeted with the biggest smile and for the next hour or so, Sadbh was bouncing in my arms with shear excitement.

When it came time for trach care, she was so exhausted that she fell into a nice deep sleep and this allowed us to manage trach care quite effortlessly.

Shortly after Katie arrived home, Sadbh was just waking up and despite being quite sleepy, you could tell that she wanted to get out of her cot and into her mommy’s arms as quickly as possible.

New photos.

Photos from September 22.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 224

Sadbh’s night was somewhat restless and she had to be suctioned quite a few times, but all in all, she did get a decent night sleep.

Shortly after three, Katie was summoned for breakfast and about an hour later Sadbh was back to sleep.

Just before six, it was my turn to look after Sadbh and she slept sound for another hour or so.

When it was time for her second breakfast, she joined Katie in bed and both mother and daughter got to snuggle and sleep in for a while.

Sadbh had a great day over all and got to spend a lot of time playing.

Trach care was very straightforward and fortunately Sadbh slept through the whole procedure.

Katie had to run a couple of errands on her way home from work, so by the time she got home, Sadbh was worn out and long overdue for bed. That was until Sadbh got an glimpse of her mummy walking in the door.

The excitement and joy that came over her was fantastic to watch.

We e-mailed Dr. Inglis and the respiratory therapist team at Children’s today with the latest news and we hope to get their feedback in the next couple of days.

New photos.

Photos from September 21.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 223

Our babysitter worked out great and Sadbh slept great. Once we got home, it was time to bring all the equipment, along with Sadbh, up to our room.

Sunday morning was quite lazy and Sadbh got to spend the morning cuddling with mummy and daddy in bed.

When it came time for trach care, Sadbh was quite tired and slept through the whole procedure. She woke up immediately afterwards and since we couldn’t get her back to sleep in her cot, we brought her up to our bed and we all took a quick nap.

Later this evening, Katie was on the phone with her father in San Francisco and when it came time for Howard to chat with Sadbh, her eyes lit up and she started grinning from ear to ear.

She did the same thing when we Skyped with my sister in New Zealand and when my sister started clapping to Sadbh, she copied her and started clapping back to my sister.

When have been thinking long and hard about our options after meeting with Dr. Inglis on Tuesday, and since we are seeing slight improvements, especially after hearing her voice yesterday, we have decided to stay the course and wait for her vocal cords to mend naturally. We can always change our minds if we so desire, however we both feel confident that things will improve eventually and that we don’t want to compromise her voice or any further damage by resorting to surgery or any other form of treatment.

New photos.

Photos from September 20.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 222

Sadbh had another night of coughing fits and required constant suctioning.

Regardless, she woke up Saturday morning with a huge smile and was ready for a nice cuddle in bed.       

Since we were changing out Sadbh’s trach, we worked really hard to get her as tired as possible so she would sleep through the entire procedure.

Katie took the lead in managing trach care, with my father helping out by holding the trach.

When it came time to change the trach, my father removed the old trach and Katie inserted the new one.

Typically when the new trach is inserted, it would cause Sadbh to gag and cough, however she usually falls back to sleep straight away.

When Katie inserted the new trach, Sadbh let out a loud cry. This was the first time we have ever heard her voice.

I did not realize at first since I was busy helping my father with the suction machine, however when we all watched the video recording, it was quite obvious that it was her voice as her trach was blocked by the obturator which is necessary for insertion.

As soon as the obturator was removed, the only sound that could be heard was the airflow through her trach.

It was definitely a very emotional moment for us all and we are hoping that this is an indication that Sadbh’s situation is improving.

Since she was now awake, Katie had to move quickly to finish off trach care.

Later in the evening we had a dinner event in Seattle as part of a fundraiser for St. Mary’s food bank.

A month or so ago, we met a nurse, outside of the agency, who is available for part time nanny work or baby sitting.

It wasn’t easy leaving the house, but this nurse came highly recommended and after watching her with Sadbh, we felt a lot more confident.

Despite feeling nervous about leaving Sadbh at home, we had a great night and Katie was receiving constant updates from the sitter via text.

New photos.

Photos from September 19.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 221

Sadbh spent Thursday night sleeping with us upstairs and needed suctioning throughout the night. She slept well, however she did have coughing fits on a regular basis and this kept both Katie and myself up right through the night.

After her morning breakfast, Sadbh started another coughing fit and Katie ended up suctioning another big mucus plug out of her trach.

What’s interesting is that none of this seems to bother Sadbh, and we are lucky that we have her hooked up to the oximeter so we can keep an eye on her blood oxygen level and heart rate.

Later in the morning, Sadbh got to chat with Ali-Baba on the phone. Katie’s mum has been sick all week, so she has not had an opportunity to come visit for fear of making Sadbh sick.

As soon as she’s better, she’s going to have some catching up to do.

Trach care got stressful for Katie and my father today since Sadbh woke up half way through it and was hungry for a feeding.

You certainly do not want to end up with a very fussy baby when her trach ties are not on and with her trach barely being held in place.

Katie and my father persevered on and got the job done.

Later in the day, we had our good friend Orla over for dinner and she got to spend some quality time hanging out with Sadbh.

Sadbh had a fantastic evening playing and hanging out with Orla, but by the time 7:30 came around, she was exhausted and ready for bed.

Saturday is going to be busy and very stressful as we have to change out her trach.

New photos.

Photos from September 18.

Have a great weekend,

Wayne, Katie and Sadbh.

Sadbh’s update – day 220

Things were a little bit better for Sadbh last night. She did have to be suctioned a few times, but not like she has throughout the last couple of weeks.

Breakfast was served at 4:45am and this made Sadbh a very happy little girl. After breakfast, she went back to sleep until 8:15, just in time for the day nurse to start her shift.

All in all she had a great day. The weather here has definitely gotten colder and very windy. Sadbh was able to get out for a short while this morning while the sun was out and it gave her an opportunity to enjoy some of the trees in our garden that still have some leaves.

My father took the lead in managing trach care this evening and it all went by quite easy since she was in a deep sleep.

Shortly after I bundled her into bed, she decided that she had enough sleep and it was time for her to hang out with me.

As soon as Katie arrived home, we headed next door to our neighbors for dinner.

Sadbh is so social and was very generous with her smiles and flirts.

Pat and Anna have been very supportive since Sadbh was born and it was great to get to spend the evening in their company.

Their son Charlie, who recently turned 7 is great with Sadbh and it seemed that our little girl couldn’t keep her eyes off of him. Every time he walked by, she almost got whiplash, as she would follow him.

Unfortunately we had to dine and dash as we had passed Sadbh’s bedtime and she was starting to get fussy.

Once we got Sadbh home, it was time to move all her equipment upstairs since we will not have nurses until Sunday night.

Hopefully she will have a good night tonight and that we will all get a decent night sleep.

New photos.

Photos from September 17.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 219

Last night was the first night we had a nurse since last week. When she arrived, Sadbh was in a very deep sleep and had a fairly good nights sleep for the most part. She did have a rough time of it from midnight until 2:30am, and fortunately our nurse was well able to take care of the situation.

On my way out to work at 5:30, Sadbh woke up and greeted me with a huge smile and was ready for breakfast.

Her day overall was quite good and she was very happy. She had a lot of secretions throughout the day, and my father, along with the day nurse had to suction constantly.

Trach care was straightforward tonight since she was so tired and had fallen into a deep sleep right after her bath.

Just before bedtime tonight, she was playing on the floor and my father had the TV on. She was fixated on the telly and couldn’t keep her eyes off of it. Even when I blocked her view, she would try to look past me to see what was on in the big rectangle in the corner.

At that, it was time to turn the TV off so she can get some quality playtime before she hits the sack.

We are still considering our options and know whatever we decide will be the right choice. At the end of the day, as daunting as some of our options might seem, our situation could always be a lot worse and we are so lucky to have such a beautiful little girl, and so many great friends to keep us strong with their thoughts and support.

New photos.

Photos from September 16.

Thank you,

Wayne, Katie and Sadbh.