Sadbh’s update – day 263 December 30, 2011

Sadbh had her most restless nights sleep on Thursday night and Katie spent most of the night taking care of her.

She had to be suctioned a number of times throughout the night and morning, and eventually Katie brought her into our bed.

Later in the morning, she got to Skype with my folks back in Cork and afterwards, we headed out to take care of some errands.

Sadbh has learned how kiss and also how to spit.

The evening before, as I headed out to meet some friends for dinner, I tried to give her a kiss, however she wasn’t having any of it. I then gave Katie a kiss, and immediately Sadbh wanted to copy it and reached out to give me a kiss.

With the good, comes the not so good. We discovered that if she drinks too much water, rather than drinking it down, she wants to spit it out. It’s actually quite funny, despite most of it dribbling down her trach and shirt.

Our friend Neil came over for dinner this evening, however Sadbh was extremely exhausted so she didn’t get to spend much time hanging out.

Katie and I had to make a tough decision regarding one of our nurses and decided to let her go.

This particular nurse worked the night shift on Sunday, and the day shift on Tuesday, Wednesday and Thursday.

We had already cancelled the Sunday night shift a couple of weeks ago since this nurse was not good at keeping Sadbh asleep and Katie ended up spending most of the night downstairs with her.

Since my father is back in Ireland, and with Peggy filling in, certain things have come to light.

My father is fantastic with Sadbh, and takes care of everything with Sadbh, and acts as her primary care giver when working with the nurse.

While Peggy was taking care of Sadbh, this nurse revealed quite a few incompetencies and reaffirmed our decision.

We had been going back and forth for the last few months on this nurse and since the agency had failed on providing us with adequate coverage, we felt that we simply had to deal with what we have. We were very confident that since my father could be trusted to take care of the situation, and that through time, the nurse might learn more about Sadbh and how to deal with her.

However, the one question that we kept coming back to was, could we trust this nurse if Sadbh had an emergency situation. And since the answer was no, it was time to let this nurse go.

The hope now is that, since the agency is now making less money from us for health care coverage, that they might actually make an effort to find a couple of good nurses to back fill these shifts.

On the positive side, the nurse that works with Sadbh once or twice a month, is trying to recruit a couple of her colleagues to sign up with the agency and to help out with Sadbh’s coverage.

New photos.

Photos from October 30.

All the best and Happy New Year!!

Wayne, Katie and Sadbh.

Sadbh’s update – day 262

Sadbh was very restless again Wednesday night and eventually ended up joining us in bed for the rest of the night.

Thursday was another great day for Sadbh and it was spent playing with Katie and Peggy.

She is slowing warming up to her Lady-bird rocking toy, but she has no desire to sit on it.

We have noticed that she has been drooling a lot more than ever, so we are anticipating a tooth to pop through in the near future. If so, then this could also explain why she is so restless during the night.

New photos.

Photos from October 29.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 261

It was another rough night for Sadbh last night and she had to be suctioned and reswaddled a number of times throughout the night.

She had a great morning at home with Katie and for lunch we headed downtown to meet up with our friend Amy who works at FareStart.

FareStart is a great nonprofit culinary job training and placement program for homeless and disadvantaged people who which to get their lives back on track. We have been meaning to go there for ages and since things are quite at work, today was a perfect opportunity.

Sadbh was quite tired when I picked both her and Katie up from home and we were hoping that she would sleep right through lunch. However as soon as we sat down, she woke up.

Since she was facing the window, she was very content sitting in her buggy looking out at the passers-by.

By the time we were half way home, Sadbh was fast asleep in her car seat and slept for another 15 minutes or so after we got home.

We had to wait to manage trach care until after I got home from work in the evening, however it was quite easy since she was exhausted.

In the past week or so, she has started grunting when having a poo. It’s extremely funny to watch, but what’s interesting is that the grunting sound is coming from her mouth, which is an indication that there is some air leakage past her trach and through her vocal cords.

Even though we have tested the Passy Muir Valve on a regular basis, and not noticed a serious improvement, these slight improvements are keeping our hopes alive.

New photos (including a video of her having a poop)

Photos October 28.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – day 260

Sadbh was very restless again throughout the night and eventually Katie fed her at 5am.

Other than her restless sleeping, she had a great morning and around noon, she had a play date with Cormac and Clodagh.

She had a great time with both of her friends and they got to play with all her new Christmas toys.

Clodagh tried to get Sadbh playing with her Lady-bird rocker, however she was having none of it.

Both Derek and Suzie received trach care training at Children’s a couple of months ago and today was Derek’s turn to sit in on trach care.

Katie and her mum Peggy managed the cleaning, while Derek watched.

We are so lucky to have such great friends.

All in all, Sadbh had a great day and hopefully she will get a much better night’s sleep tonight.

New photos.

Photos from October 27.

Take care,

Wayne, Katie and Sadbh.       

Sadbh’s update – day 259

Despite the lack of sleep throughout Christmas day, Sadbh was awake shortly after 2am and needed suctioning and a snack.

She joined us in bed for the rest of the night and slept until 7am Monday morning, when she awoke for her breakfast.

Since we had nothing planned for the day, we decided to relax and sleep in as long as we could.

It was great as we managed to sleep until 11am and Sadbh was able to catch up on some well-deserved rest.

After we finally dragged ourselves out of bed, we Skyped with Katie’s Aunt Cammy, Uncle Einar, cousin Bjorn, his wife Erin and their son Sam in Norway. Sam was very entertaining and showed Sadbh his new lion.

As soon as we finished Skyping with Norway, it was time to Skype with my folks in Cork. Their friends Sheila and Richard were visiting, and got to see Sadbh showing off her ability to blow raspberries and how good she is at trying to stand.

The rest of the day was very lazy and Sadbh got to hang out playing with her new toys.

For dinner this evening, we introduced meat into her diet, and she loved it. It was a blend of chicken, carrots, potatoes, leaks and tomatoes.

I’m thinking that we introduce her to a nice medium rare filet mignon next week.

New photos.

Photos from October 26.

All the best,

Wayne, Katie and Carnivore Sadbh.

Sadbh’s update – day 258 Christmas Day

It seems that Sadbh’s routine has changed and she is now waking around 3am for a late night/ early morning snack.

Christmas morning was very exciting in the Walsh household. Maybe not so much for Sadbh as it was for Katie and myself.

In fact, Sadbh was terrified of the first gift that Santa gave her.

It was a rocking ladybird that plays music, and it has a nice big comfortable seat for Sadbh to sit in. I think she will get used to it, but she certainly did not want to have anything to do with it Christmas morning.

She was fascinated with the gift wrapping and bows.

Peggy and Kirk arrived for brunch and next thing, the Skyping started.

We first Skyped with my brother, his wife Ann and her family in Killarney.

Sadbh got to meet Sean, Lisa, Andy, Eabha and Sadhbh (another spelling of Sadbh), and they all got to tell Sadbh what Santa brought them.

Afterwards, we Skyped with my parents and all my cousins in Cork. Sadbh even got to meet baby Layla, the latest edition to the family.

Next it was time to Skype with Katie’s sisters family in Portland and Sadbh was serenaded by Lulu who sang the 12 days of Christmas.

By the time we were done Skyping with everyone, Sadbh was exhausted, so Peggy and I gave her a bath and started trach care.

As soon as I her trach ties removed and had started cleaning, her eyes shot open and we realized that we were going to have to work extra hard to get her back to sleep and to finish trach care.

Once we were done, we bundled her upstairs to her cot, however she wasn’t having any of it and it was back downstairs to unwrap the next present.

For Christmas dinner, our friends Theresa and Orla generously hosted at their house in West Seattle.

They had set their basement up as a play area for all the kids and the house was so full of delight and Christmas cheer.

Sadbh was surrounded by all her friends and got to take part in another gift exchange with everyone.

Clodagh gave her a cute wooden train set in which each carriage was a letter that spelt out her name.

Luna and Cora gave her a toy camera. Now it’s Sadbh’s turn to start taking photos of me to make up for all the photos that I have taken of her.

Aidan gave Sadbh a cute book on what’s yummy and what’s yucky.

Dylan gave her a wooden box for sorting wooden shapes.

Cormac gave her a cute red tutu and a green headband. She looked adorable in her tutu, and with the addition of her headband, she actually looked like a strawberry.

Despite having only a 15-minute nap throughout the whole day, she did not want to miss out on any of the fun. There were times during the evening where she could hardly keep her eyes open, however she fought hard to stay awake and was so happy regardless.

By 9pm, she was definitely having a tough time staying awake, so we bundled her up and left for home. She wasn’t in her car seat more than a minute before she was fast asleep.

Theresa and Orla really outdid themselves and made Christmas so much fun for everyone.

We are so fortunate to have such wonderful friends.         

It was quite obvious that Santa had a busy day, as I’ve never seen so many happy kids.

New photos.

Photos from October 25.

Merry Christmas,

Wayne, Katie and Sadbh.

Sadbh’s update – day 257

Sadbh slept soundly until 3:30 this morning, but then started tossing and turning until 5 when she finally woke up for her breakfast.

Eventually she fell back to sleep in our bed and did not wake up until after 8.

Since it is Christmas Eve, we had a fairly busy day planned and tried to get as much done in preparation for Christmas.

We actually made a list of all the things we had to achieve today, however we really didn’t achieve much on the list. That said, despite not being able to take care of the things we had set out to, we did accomplish a lot more than we had anticipated.

Sadbh got to Skype with her cousins in New Zealand as they got to celebrate Christmas Day, and straight after that, she got to Skype with my parents back in Cork.

By the time she was done Skyping all over the world, she was wrecked tired, so we took advantage of this and got trach care out of the way. She was out like a light and before she knew it, she was bundled up and in bed in her cot upstairs.

An hour or so later, she was wide awake and ready for lunch. Next thing we got a surprise visit from Sophie, her fiancé Felix, their son Felix Jr., and their newborn Vivienne. Sadbh was fascinated with Felix Jr. and couldn’t keep her eyes off of him.

Sadbh was exactly the same weight and length as Vivienne when she was born, and it was really interesting to the difference in size she was today in comparison.

Vivienne is the cutest little girl and it was great to see the pride in both her parents. She is so lucky to have a great family and we cannot wait until she is big enough to have play dates with Sadbh.

Our friends Sarah and Gerry hosted a Christmas Eve party at their house, so we headed over there in the evening. It was wall-to-wall children and Sadbh had a great time.

The funny thing is, since everyone has kids now, the parties end a lot earlier than they used to.

Even though Sadbh doesn’t know who Santa is, or what Christmas is all about, both Katie and I are really excited for Sadbh’s first Christmas and cannot wait until she get’s to open her gifts in the morning.

That said, I’m sure she will have more fun playing with the wrappers and boxes than what’s in them.

New photos.

Photos from October 24.

Merry Christmas to you all!

Love,

Wayne, Katie and Sadbh.

Sadbh’s update – day 256

Sadbh slept well Thursday night until 3am and despite trying to get her back to sleep, Katie ended up having to feed her to get her back to sleep. Sadbh didn’t make it back to her cot, and ended up sleeping with us for the rest of the night.

We are testing a new sleeping arrangement and instead of having Sadbh’s cot at the end of our bed, we have moved the bed to one side so Sadbh’s cot can be placed right next to Katie’s side.

Later in the morning, Katie texted my father to see if they were around to Skype.

As soon as my parents appeared on the screen, Sadbh instantly recognized my father and got the largest smile on her face. She was so happy watching and listening to both my parents.

After Skyping with my folks, Peggy arrived for a visit and it was time to Skype with Katie’s family in Portland.

Afterwards, Katie and Peggy managed trach care and Sadbh slept for almost an hour and a half.

I was able to leave work around noon and shortly after arriving home, Sadbh was just waking up from her nap.

This meant that it was time for lunch and then playtime.

A few weeks ago, Sadbh received a lovely gift of a cute outfit that included a tutu from our friends Emmanuelle and Claudio and their two girls.

Sadbh got to wear it this evening and spent the whole time trying to get the tutu into her mouth.

She looked adorable and was very happy in her new outfit.

                            

Katie and I had a dinner appointment for Friday night so we called on the services of Shaunti , the baby-sitter nurse, who we met though Audrey, the great nurse that looked after Sadbh throughout the summer.

Sadbh was quite happy hanging out with Shaunti and even went an hour past her bedtime.

A couple of hours later when we arrived home, Sadbh was still sleeping, however she was getting restless and starting to wiggle her way out of her swaddle.

It took a while to get her bundled up and back to sleep.

New photos.

Photos from October 23.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 255

Another great night was had by Sadbh, and she slept soundly until 6am.

Despite our woes with our nurses, we currently have one really good nurse that works great with Sadbh, especially at night. I’ve mentioned before that this nurse has a daughter that is two days younger than Sadbh and as a result, she knows exactly how to take care of a restless baby.

Over the last week or so, we have noticed that Sadbh is not as interested in crawling as she is interested in trying to walk. Tonight when I placed her in her cot she instantly grabbed onto the rails and dragged herself up so she was standing upright, and ended up looking for a way to escape.

I think it’s time to lower her bed down a few notches so she cannot fall out of her cot.

That said, it’s unlikely that she will get far enough to fall out since she is under constant observation.

Katie has all of next week off of work, so we have cancelled all nursing care until the new year, so Sadbh will be sleeping upstairs with us for the next week and a half. I love it when I get to wake up in the same room as Sadbh.

New photos.

Photos from October 22.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 254

Sadbh had a very restful nights sleep and slept until 5:45am.

She was fussy around 11:30, and the nurse thought that she might be in for a busy night, however as soon as she got Sadbh swaddled and settled down, she was out for the rest of the night.

Sadbh had another great day with Peggy and unlike yesterday, she did a much better job eating solids.

Since we managed trach care so late yesterday evening, Katie went home at lunch time today to take care of it with the help of Peggy.

During the day, our day nurse send us a cute photo of Sadbh playing with a doll that my mother sent over, and in her e-mail, she joked at how Sadbh was sharing the dolls binky. After opening the photo, it was quite obvious that Sadbh was not sharing, but rather stealing the binky from her doll.

Later on after I arrived home from work, I found Sadbh playing with her doll, however it looked more like that she was wrestling with the doll rather than playing.

Big congratulations to our friends Sophie and Felix on the arrival of their baby girl Vivienne. We cannot wait to meet her and Sadbh is looking forward to playing with her new friend.

New photos.

Photos from October 21.

Take care,

Wayne, Katie and Sadbh.

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.