Sadbh's update - day 128

Since my mum only has a few more days left on her visit, she has volunteered to feed Sadbh throughout the night, allowing her to spend as much time as possible with her granddaughter.

Around 1am on Wednesday morning, my mum and the nurse alerted us that Sadbh had a high temperature of 102.3 degrees, and her heart rate was 195. After feeding and giving her Tylenol, her temperature came down, as did her heart rate. Our night nurse is great and was able to keep a close eye on Sadbh's condition throughout the night.

Unfortunately, at 6am when we took over from the night nurse, Sadbh's temperature was back up. By 7am, when we are able to give Sadbh more Tylenol, her temperature was back up to 101.1 and her heart rate was at 188. 

Within thirty minutes, her temperature and heart rate was back down, and as soon as her pediatrician's office was open, we called to make an appointment.

Fortunately, Dr. Bowe had an opening and was able to see Sadbh straight away. 

At this stage, her temperature was good, as was her other vitals. He checked her respiratory rate, lungs, heart rate and also examined her ears for a possible ear infection and determined that there was no concern there and that everything else also looked good. 

Throughout the examination, she was full of smiles and kept flirting with her doc. 

He increased her Tylenol dosage from .6ml every 6 hours to .8ml every 4 hours, and instructed us to let him know if the high temperature persisted over the next three days. 

We kept a close eye on her vitals for the rest of the day and everything seemed to remain stable. 

Later in the day, Sadbh and her cousins went on a nice walk up to the playground in Madrona, and while Josh and Sadbh got to snooze and hang out with their parents, Conor got to spend time on the slides and swings. 

A good time was had by all.

By 10pm, when the new night nurse arrived, Sadbh's temperature and other vitals remained stable, so we are confident that whatever it was, had already passed.

New photos.

Photos from June 17th.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 127

Sadbh slept great throughout the night, and at 6am I brought her up to our bed after the nurse signed off.

She slept for another couple of hours, and when she woke up between Katie and I, she had the biggest smile ever. 

She was facing Katie, and when Katie asked her where her daddy was, she turned her head, smiled at me, and reached out her arm to touch my head. 

Not sure if it was all a coincidence or not, but it was really cute.

She is starting to touch and feel things more now, and it's fascinating to see how inquisitive she is. Her facial expressions are also very interesting to observe. 

It was another busy day between family stopping by to say good bye, and running people to the airport. 

Kati, who is here from Germany, was able to help Katie out with trach care, and proved to be a huge help in taking good care of Sadbh throughout the day.

With such lovely weather, one cannot pass the opportunity to go for nice long walks with Sadbh. 

Katie and Kati took advantage of this and headed towards Madrona and beyond. It's also a great opportunity for Sadbh to get a nice relaxing nap.

New photos.

Photos from June 16th.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 126

Things started to get back to normal for Sadbh on Monday. We still have a lot of visitors in town, however there were quite a few farewells throughout the day. 

She is one happy and social baby. It seems like she is well aware of all the positive energy, love, prayers and well wishes from everyone over the past few months. It's like she has this sense of gratitude when she meets someone for the first time. 

Since I'm on vacation for the next couple of weeks, we have decided to scale back on the nurse care for the time being so both Katie and I can take care of Sadbh 100% and to reassess our need for in home care. We will continue night nursing, but feel that we can manage fine during the day.

We are also thinking that Sadbh might enjoy a trip to the zoo later this week, and maybe a visit to the flight museum. Well, it's probably more for Katie and I more so than Sadbh.

New photos.

Photos from June 15th.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 125

Sunday was a very busy and exciting day for Sadbh.

A large group of family and friends turned out to the Immaculate Conception Church on First Hill in Seattle for the baptism of Sadbh and her cousin Josh.

Shortly after the sermon started, both children fell asleep, however, as soon as Fr. Fabian blessed them with holy water, their eyes shot open and the look of surprise on both of their faces was fantastic.

I was nervous that Sadbh might get fussy as it was getting very close to lunch time, but she stayed very calm throughout the sermon.

We were able to sneak her a bottle during communion, and this kept her content and more importantly, kept Princess Angry Bird away.

After mass, we held a reception at our house afterwards and our friends Lydia, Theresa, Orla, Hailey and Kathi put together the most delicious food for all our guests.

I have to admit, I am seriously blessed with some of the greatest friends that anyone could have. These amazing women worked so hard to feed all our guests, and they wanted nothing in return.

Thank you all so much!!!

It seemed to be a great way to spend the afternoon, surrounded by wonderful family and friends. It’s moments like this that I consider myself so fortunate, and it helps to erase all the hardship that we have been through over the past few months.

So many others helped with the organizing of the reception, Yuki, Hailey, Katie’s aunt Cammie, my parents, Dan and Trish, Ger and Ann. We are so lucky.

With all the excitement throughout the day, we ended up having a very tough time getting Sadbh to sleep for her trach care.

We finally managed to get her into a deep sleep, and as soon as we had her trach ties removed, she woke up and got very fussy.

In the early days when we had to deal with this, it created a lot of stress for both Katie and I. Since we are now both fairly expert at changing Sadbh’s trach ties, we were able to deal with the situation and got the job done, although it took a little bit longer than usual.

Sunday evening was very relaxed and I think it was the earliest that everyone got to bed in a long time.

I also want to thank Sev for taking photos of the baptism and reception, and all the photos from the wedding on Friday.

New Photos.

Photos from June 14th.

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 124

Saturday started off very relaxing for Sadbh. Thanks to my mother and father, she was well taken care of throughout the night and even got to sleep in a little later than usual.

We got an opportunity to show our potential Au Pair, Nini, how we manage Sadbh's daily trach care, and fortunately she's still interested.

Later in the day, after dropping uncle Barry off at the airport, the three of us decided to stop off for a quick bite to eat on the way home. The restaurant we chose is really fast at getting the order in and the food out, however it is also quite noisy. That said, Sadbh didn't seem to mind much at first. She sat next to me and was playing with a few of toys. 

Eventually she started to get extremely fussy, so I took her out of her car seat and passed her over to Katie. 

This didn't seem to help much and we figured that we would put her back in her seat to suction her. At this point her blood oxygen level started to drop down into the eighty's and I noticed that her secretions were dripping from her artificial nose on her trach.

I quickly removed her trach nose and Katie jumped into action with the suction machine. We cleared her trach, but at this stage she breathing quite deeply and looked very lethargic. 

Fortunately our server was close by so we settled up and bolted out the door. 

On the drive home, Sadbh was not responding to me, even though her heart rate and blood oxygen level was back to normal. Her breathing was still quite deep and it seemed thats all that she was focused on.

As Katie drove, I called my father, who was back at the house, to make sure our supplemental oxygen equipment was set up as soon as we got into her room.

Once we got her onto her changing bed, we removed the new nose from her trach, and administered oxygen to make sure she was getting enough. 

She still had a lot of secretions, and was making a terrible gagging sound, which we had never heard before.

Eventually she calmed down and it looked like we were able to get her vitals all stabilized, including her respiratory rate. Her temperature was also good, so I hope she's not about to come down with some type of cold.

Katie then fed our exhausted baby and after a diaper change, we put her in her cot where she fell into a deep sleep.

We kept a close eye on her throughout the evening and into the night, however it seems that her secretions are quite thick, despite our efforts to loosen them up.

She's doing good as I write this, but we might have to change out her trach at some stage today.

New photos.

Photos June 13th.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 123

Friday was a very busy day for Sadbh.

Since there was a lot going on in the afternoon, we had to adjust her trach care schedule by a few hours.

Granddad Gerry helped out and after getting Sadbh into a deep sleep, we were able to change out her trach ties and clean her neck quite easily.

Then it was quite the race to the venue for set up. We had to wake Sadbh up from her sleep to get her ready, however she was a really good sport about the whole thing.

She really looked so adorable in her little white dress with her fancy red shoes, and later in the evening she got to change into a nice red dress for a spot of dancing with her daddy.

She is seriously turning into a diva, with all her costume changes!

She did spend a lot of the day sleeping in the bridal room, however I cannot believe how good she was throughout the entire day.

We were extremely fortunate to have her in the excellent care of one our nurses, and this allowed us to be able to relax and enjoy the day with all our family and friends.

New photos.

Photos from June 12th.

All the best,

Wayne, Katie and Sadbh.  

Sadbh's update - day 122

At long last, our nurse from Children's came by for a meet and greet. I can't believe it's taken so long for our agency to process her application, but now that she is on board, we are looking forward to working with her.

Sadbh had a great day, and got to spend a lot of time hanging out with her grand parents and cousins.

We have trained my father on trach care, and he has been helping out the past few days. This has been very helpful as it frees up time for Katie to take care of a few things before the big day.

Cormac came over to hang out for a few hours today and got to spend time playing with Sadbh and her cousin Josh. 

New photos.

Photos from June 11th.

All the best,

Wayne, Katie and Sadbh.