Sadbh’s update – day 253

Sadbh had a very good night’s sleep last night, thanks in part to the midweek night nurse.

When she finally awoke at 5am, she was quite upset, however the nurse used baby sign to explain that Katie was coming, and apparently Sadbh understood and instantly calmed down.

Since my father is home in Ireland, Katie’s mum, Peggy has stepped in to take care of Sadbh throughout the day.

Peggy is fantastic with Sadbh and usually spends the day playing and singing to her.

In fact, when I arrived home from work, all I could hear is Peggy singing. Needless to say, Sadbh was very happy and in great hands.

Katie brought her colleague Joni home to meet Sadbh during their lunch break and Sadbh had a great time.

She certainly get’s a lot of attention, I hope it doesn’t go to her head.

Sadbh didn’t do so well with eating solids today. My father has a great way with Sadbh and obviously knows the best way to feed her.

To make up for the lack of solids, she did devour a couple of bottles of milk in the afternoon, however later on she did barf some of it all over me. 

Trach care was much later than usual tonight, and by the time we got started, Sadbh was fast asleep.

She slept right through trach care, but was wide-awake a few minutes after we wrapped up.

After another feeding and some playtime, Sadbh had a huge diaper blow out, and it leaked all down her leg and through her clothes.

Since this required a huge clean up effort, we figured it would be best to give her another bath, but this time we set her little tub up in the bath as opposed to her room.

The look of confusion on her face when I placed her in the tub was priceless. For a few moments she did not seem comfortable with this new setting, but after a few splashes she relaxed and started to enjoy herself.

Her nap schedule was completely off today, so it was 9pm before she was ready to go to sleep.

I have a strong feeling that she really misses Granddad.

New photos.

Photos from October 20.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 252

I think we made the right decision in getting rid of the Sunday night nurse.

Sadbh had a restless night, and had to be reswaddled a number of times, however Katie was able to settle her back each time. If the nurse was working, Katie would have been called down and neither she nor Sadbh would have gotten any rest.

All in all, Sadbh had a great day and spent it playing and having fun, when she wasn’t sleeping.

Little did she know that Granddad was heading back home to Ireland today and that it will be almost three weeks before she gets to see him again.

It was an emotional farewell at the airport and even though we are going to miss him terribly, we are so happy that he is going home to my mom for Christmas.

They have both sacrificed so much to help us out with caring for Sadbh and we are eternally grateful for everything they have done for us and especially Sadbh.

New photos.

Photos from October 19.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – day 251

Sadbh slept great on Saturday night and did not wake until 5:30 for breakfast Sunday morning. As before, she joined us in bed for a nice cuddle and after a little playtime, she slept sound for another couple of hours.

Later in the morning, our friend Suzie came over to help Katie with trach care, and even though it was her first time since being trained in October, she did a fantastic job.

The rest of the day was hectic as we still had a few Christmas gifts to find. Katie and I had to call on the services of Super Granddad to baby sit our princess again for another few hours.

Sadbh had just woken up shortly before we got home, and was full of energy.

After Sadbh was fed, it was time to head down to the basement for some playtime and also to test out her Passy Muir Valve.

We kept the valve on for twenty minutes or so, and could definitely hear some sounds coming through her mouth, especially when she coughed.

That said, we did not hear enough air leak, and eventually we needed to take it off as it was causing her secretions to increase quite a bit.

We will just have to keep practicing on a daily basis so she get’s more used to it.

We decided last week that we were going to cancel the Sunday night nurse, since she does not know how to keep Sadbh asleep and as a result ends up keeping Katie up for most of the night.

New photos.

Photos from October 18.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 250

Sadbh had another great night’s sleep and didn’t wake up until almost 6am.

After her breakfast and diaper change, she stayed with us in bed for the rest of the morning.

Since today was the day for her monthly trach change, we kept her awake as long as we could so she would sleep sound when it came time to take care of business.

It worked out well and she slept great as we managed trach care, and the actual trach change.

Despite having plenty of experience changing out Sadbh’s trach by now, it’s still very stressful.

Later on, my father offered to baby-sit Sadbh for a couple of hours, while Katie and I ran out to get some Christmas shopping done.

While we were out, we stopped off at a grocery store close to Children’s hospital and I noticed a woman who was wearing an orange lanyard from Children’s identifying her as a parent of a patient.

It brought me back to when we were practically living there ourselves and how uncertain our future was.

Even though it was only 8 months ago, it seems like a lifetime, and we are so surprised at how far we have come.

New photos.

Photos from October 17.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 249

Sadbh had a very good night’s sleep on Thursday and slept until almost 6am.

She is always very playful and full of fun when she first wakes up, and especially after she’s had her breakfast.

Our nursing agency sent over a potential candidate for us to interview. She was certainly a qualified nurse, however we felt that she did not have anything special to add.

At this stage, unless we meet someone who impresses immediately, we feel it’s too difficult to go through the process of introducing yet another nurse to Sadbh’s schedule and for us all to get used to having a new person in our house looking after Sadbh.

Around noon, Katie’s mum stopped by to help my father make an advent calendar for Sadbh. They had a great time working on this and Sadbh had fun helping out.

Later in the evening, our friends Andrew and Erin stopped off to see Sadbh before they headed off for the Christmas holidays, and they gave Sadbh a gift for under the Christmas tree.

She had just woken up and had a feed moments before they arrived, and was still very groggy. As soon as they arrived, she came to life and was in a very playful mood.

After we put Sadbh to bed, Katie and I had a concert to go to, so my father baby sat our little princess and off we went.

She slept great throughout the evening and was still in a deep sleep when we arrived home.

We are so fortunate to have my dad here helping out and we are also so lucky to have great friends in our lives.

New photos.

Photos from October 16.

Have a great weekend,

Wayne, Katie and Sadbh.

Sadbh’s update – day 248

Wednesday night was a great night for Sadbh and she slept right through until 6am. After breakfast and a diaper change, Sadbh got to play with her mommy for an hour or so, and then took a nice nap for another couple of hours.

Even though she did not realize it, today was about to be an exciting day for Sadbh.

In the spirit of Christmas, we wanted to bring Sadbh to visit Santa, however we were quite nervous that due to the volume of children visiting Santa, Sadbh would be susceptible to catching a cold or something.

After searching around, we found that one of the department stores downtown has a Santa specifically for these situations and after explaining Sadbh’s condition, we were assured that this Santa had a low volume of visitors and was perfect for Sadbh’s visit.

We scheduled an appointment and tonight was the night that Sadbh was going to meet Santa for the first time.

Traffic was a nightmare, but it did not stop us from getting downtown on time and when we arrived, everything looked perfect, there were only three families in line and we were glad that we had found out about this particular Santa.

That was until we noticed one of the families handing their little dog to Santa for its photo shoot.

After talking with the manager, we learned that the person who took our reservation had not made note of our circumstance, so we ended up with a regular Santa.

It was an unfortunate turn of events, however we figured since we came all this way, we were not going to turn back.

The game plan was for Katie to hold onto Sadbh and she would sit next to Santa for the photos.

Sadbh was fascinated with the big guy and couldn’t keep her eyes off of him.

The photographer had to work hard to get her attention, and she did a fantastic job.

Sadbh looked beautiful and we ended up with a bunch of great pictures. The professional photos are not due until next week.

New photos.

Photos from October 15.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 247

Sadbh had a very restless nights sleep, and was awake at 1:30, and again at 3:40. Fortunately the night nurse that was on shift is great and was able to take care of her, and got her back to sleep each time.

By 5:00, she was wide-awake and was very ready for breakfast. She didn’t have to wait long before Katie arrived on the scene and took care of business.

Sadbh had a great day and Katie’s mom came over just before noon to help my father manage trach care.

After Sadbh woke up from her nap, my father fed her a bottle and sweet potato, however something didn’t sit well so she puked it all up.

Since she had an empty belly, my father prepared some serial, which she devoured and ended up very happy.

I had a work Christmas Party to attend this evening, so it was getting close to Sadbh’s bedtime by the time I arrived home. Fortunately she was still awake and we got to cuddle and spend a little amount of time before she went to bed. I actually got to read her a bed time story, but I don’t think she was really that interested. Nevertheless, I was very happy to get to spend those few precious moments with her before it was time for bed.

I hope she has a better nights sleep tonight.

New photos.

Photos from October 14.

All the best,

Wayne, Katie and Sadbh.