Sadbh’s update – day 185

Sadbh had another great day today.

A few days ago, Ali-Baba bought a teething ring for Sadbh and she can’t get enough of it. It’s either her binky or the teething ring. Neither one cannot be more than arms reach at any given time.

Since it was such a nice day, my father convinced the new day nurse to join him and Sadbh for a walk through the neighborhood.

Previous attempts to leave the house failed since the nurse was concerned about Sadbh’s safety. A couple of days ago, she was surprised to learn that Sadbh has been out of the house on several occasions and to be honest, we were very surprised that she thought that Sadbh was house bound on a full time basis.

All three had a great walk and by the time they reached their destination, Sadbh was fast asleep.

A few months ago, Sadbh’s grandfather Howard gave her a christening cup as a gift. Today Sadbh got a chance to play with her cup and ended up putting a couple good dents into it. Job well done as that is part of the intention.

New photos.

Photos from August 13.

Take care,

Wayne, Katie and Sadbh.       

Sadbh’s update – day 184

Sadbh awoke around 4:30am this morning and moments after Katie fed her, she had the worst projectile vomit ever. It was so bad that after changing all of Sadbh’s clothes, Katie had to change her own.

It took quite a while to get Sadbh back to sleep and by the time Katie returned to bed, she was absolutely exhausted.

Sadbh had a good day over all and in the afternoon she had an appointment with a speech therapist at Children’s Hospital.

The appointment went really well and the therapist was very impressed with Sadbh’s alertness and awareness. She even commented on Sadbh’s intelligence.

Considering that she has a trach and cannot create sounds due to her vocal cords, we learned how to teach her how to imitate the way sounds are emitted through the mouth.

She also provided guidance on how to use gestures to help Sadbh communicate, along with baby sign.

It was a very informative meeting and we are looking forward to training Sadbh on speech development along with baby sign.

New photos.

Photos from August 12.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 183

Sadbh had a restless sleep last night and was awake by 4:30am. Even after breakfast, it took over an hour to get her back to sleep.

This actually gave me an opportunity to cuddle with her for a while, before I left for work.

Overall Sadbh had a great day.

Granddad is fantastic with Sadbh and the two have become very close. He has gotten to know her extremely well and is constantly at her beck and call, without failure.

Even Ali-Baba stopped by to see Sadbh and got to hang out for a while.

Trach care was a little later today than usual, however by the time she was ready, she was fast asleep in no time. Shortly after we were done, she woke up and was ready for dinner.

The rest of the evening was spent playing with all three of us and you could tell she was having a grand time. By the time she went to bed, she was absolutely exhausted. Let’s hope she sleeps soundly tonight.

Every so often I stand back and reflect on how very different our lives has become.

Both Katie and I were well aware that once a baby came into our lives, that everything would change, and we were as ready as anyone could be. Nothing prepared us for the last six months.

There are moments where it all feels so surreal. Like when the night nurse is making small talk at 5:30 in the morning, and you can tell that they feel as awkward and as uncomfortable as you do. Or when you have to teach a nurse on how to remove the artificial nose when it becomes stuck on Sadbh’s trach.

It’s so exhausting and stressful having to manage trach care every single day, and the moment of panic you feel every time you hear the oximeter alarm go off.

We have come a long way since Sadbh was born, however I feel we still have quite the journey ahead of us.

Thankfully, just having Sadbh in our lives makes it all worthwhile.

New photos.

Photos from August 11.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 182 - 6 month birthday

Sadbh slept for ten whole hours last night and did not wake up until 6:30am. This is a great achievement, especially considering that the night nurse made enough noise throughout the night to wake both Katie and myself up at least twice.

After her first wake up and breakfast, she quickly went back to sleep for another couple of hours.

She was so happy and full of smiles when she woke up.

As my father fed her, she had this sly little grin as she looked over at me. She knows only too well that she has us all wrapped around her little finger.

We tested the Passy Muir valve for approximately 15 minutes and she managed it very well. Last week during one of Sadbh’s appointments at Children’s, Carol from the Respiratory Therapist team punched a small hole in the Passy Muir valve to allow Sadbh to exhale through the valve. The goal with this is to allow her to get used to the reduction in exit airway, and forcing some of the exhaled air up through her nose and mouth.

During her lunch today, we fed her some more pear puree with her mom’s milk. She actually ate a few spoonfuls, which is an improvement on the last few days.

Sadbh turned 6 months old today, and it blows me away to think of how far she has come in such a short amount of time. That said, after everything the three of us have been through, it often feels like it’s been years.

The hope is that things will get easier with each day.

Despite the fact that her vocal cords don’t work and that she ended up with a tracheotomy, she is the most wonderful baby in the world and we are so lucky to have her in our lives.

I know in my heart and soul that I would not have it any other way.

New photos.

Photos from August 10.

All the best, and thank you for your continued love, prayers and support!

Wayne, Katie and Sadbh.

Sadbh’s update – day 181

Since I didn’t get a chance to snuggle with Sadbh on Saturday morning, I was able to make up for it this morning.

We had a nice long lie in and Sadbh was full of energy and fun.

We got trach care out of the way early on Sunday and once Sadbh woke up, we packed up the car and headed down to the Pike Place Market.

By the time we arrived at the market, Sadbh was fast asleep so my father stayed with her in the car as Katie and I got ingredients for dinner.

Once we were done with the market, we headed up to a restaurant on Capitol Hill to meet up with Lydia, Suzie and Cormac for the first meeting of the “High Five Sadbh Guild” for Children’s hospital.

Back in April, shortly after Sadbh was admitted to Children’s, Suzie, Lydia, Sarah and Amy contacted the hospital to set up a guild in Sadbh’s name, to benefit the hospital and patients that do not have health insurance.

After submitting our application to establish a guild, it took a couple of months for the board at the hospital to review and approve our application.

Now that it is finally approved, our goal is to set up a number of fund raising events over the next year.

Later in the evening we fed her some more pureed pears and it seems that she is starting to get used to the taste and the fact that it’s served on a spoon and not from a boob or bottle.

New photos.

Photos from August 9.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 180

I didn’t get a chance to snuggle and sleep in with Sadbh Saturday morning, as I had leave the house early to pull the boat out of the lake for the winter.

Sadbh had a great sleep in with Katie though, and both ladies got in a lot of cuddles.

By the time I got home, Katie had already left for a hair appointment, and Ali-Baba and Kirk were looking after Sadbh.

Sadbh was in a great mood and spent most of the time playing with Ali-Baba.

The timing worked out perfect, by the time she was ready for her next nap, she was exhausted so we took the opportunity to do trach care.

After her bath, it didn’t take long to get Sadbh in to a deep sleep and this allowed us to manage trach care in no time whatsoever.

She slept for another twenty minutes or so, and by the time she woke up, Katie had returned home so we all headed out for a late lunch.

It had turned out to be a beautiful day, so we decided to walk up to Capitol Hill for a bite to eat and to also get groceries for the week.

I’ve said it many times before, but we are so fortunate that Sadbh is such an easy going child. She was very happy the whole time and did not fuss once.

After we returned home, Sadbh had her dinner and we tired to introduce solid foods again. This time we mixed up the pureed pear with some of Katie’s milk. Despite this enhancement, Sadbh still did not seem to be too interested.

Before going to bed, we all spent time playing with her and by the time she went to bed, she was wiped out.

It was another hectic day for our princess and she was out like a light as soon as she was placed in her cot.

New photos.

Photos from August 8.

Happy birthday to my mum and my aunt Doreen.

Best wishes,

Wayne, Katie and Sadbh.

Sadbh’s update – day 179

Sadbh had a good nights sleep and didn’t wake up until 5:30 Friday morning.

After her early morning breakfast, both she and mommy got to snuggle up and sleep in for another few hours.

Her first doctor appointment was with Dr. Cavanaugh who is her Cranial Osteopathy specialist.

She had a good session with Dr. Cavanaugh and was very relaxed throughout, even falling asleep half way through it.

Afterwards, she headed over for a walk around Greenlake and then over to Roosevelt to meet Ali-Baba for lunch.

After lunch, she had an appointment with her Homeopathic doctor, Dr. Heron and received a new remedy of Phosphorus to replace the Plum Bum.

Phosphorus should help with her vocal cords and suits her symptoms more now that she’s getting older.

When I arrived home after work, Sadbh had been awake for a couple of hours and was almost ready for trach care.

I got a chance to play with her for a while before giving her a bath.

Katie and my father managed trach care this evening and Katie was extremely impressed with how good my father was.

She slept for a while and as soon as she woke up, we Skyped with my sister in New Zealand and her youngest son Josh.

After that, we all headed out for dinner.

We ended up in this cute Greek restaurant on the back end of Capitol Hill and Sadbh immediately started flirting with the surrounding customers and quickly became the center if attention.

She had herself a great evening and was very playful throughout.

New photos.

Photos from August 7.

Have a great weekend.

Wayne, Katie and Sadbh.