Sadbh’s update – day 324 February 29th, 2012

Sadbh had a rough early part of her night.  She seemed to be suffering from pretty painful gas and ended up sobbing in her sleep for over an hour.  It was heart breaking to see her little face shriveled up and watch her silently cry. 

Both Larissa and Mommy were on the case and after an hour or so of snuggles with Mommy, she finally fell back into a deep sleep.  However, she continued to be restless through out the night.  She finally woke around 5:30am and again asked for Mommy and milk with her hands.

Daddy has a business trip to Las Vegas this week and was up early to get ready for the airport.  Sadbh and Daddy had some early morning playtime and soon after Daddy left, Sadbh was snuggled back in bed.

She woke up again at 9am and was happy to see Molly and Grandad waiting to play with her.  It was a cold and blistery winter day so the three were homebound.

In the early afternoon, Sadbh got to Skype with her family in Ireland.  Nana Pauline, Dodo, Uncle Ger and Aunt Ann were all there and Sadbh enjoyed showing them her new tricks. 

Once they had Skyped for awhile, it was time for trach care.  Sadbh was so exhausted that she slept on for over 2 more hours.

Sadbh had an amazing appetite today.  She might be going through a new growth spurt and needing more fuel to keep her going. 

This explains the weight gain they tracked at Children’s yesterday.  Sadbh weighed in at 17 lbs 2 oz up from 16 lbs 10 oz at her last pediatric appointment.

She sure misses her Daddy and hopes he wins big on the roulette table in Vegas!   But mostly she just wants him to hurry home.

New photos.

Photos from December 29.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 323 February 28th, 2012

Sadbh slept great for Larissa last night did not wake up until nearly 5:30am.

When she woke up, she looked at Larissa and with both hands, she made the baby sign for milk followed by the sign for Mommy. Larissa new exactly what she needed.  She called Katie down and breakfast was served.

Peggy came over early today to help my father with trach care before we headed off to the hospital.

When it came time to leave, we had to wake Sadbh up from a deep sleep, and she was not very pleased.

She constantly turns heads, and while we were in Children’s today, we even had nurses that had only met Sadbh once before, come up to see how she was doing.

Our meeting with Dr. Inglis went well, however we did not receive the results that we had anticipated and hoped for.

He was impressed with Sadbh’s physical developments and could not believe how big she was getting.

During previous bronchoscopes, she had been very easy to keep calm. Today was quite the struggle and she fought it tooth and nail. After Dr. Inglis had removed the scope from her nasal cavity, Sadbh looked directly at him and pointed as if to say, I thought you were a nice guy, but I’ll remember you the next time.

It gave us all a good laugh to say the least.

Unfortunately he did not see any significant improvement in her vocal cords, and admitted that at this stage, he was more skeptical that there would be any spontaneous healing of her vocal cords.

In an effort to prevent any development issues with speech and her voice, Dr.Inglis highly recommended that we consider a procedure where he would inject Botox into her vocal cords that would open her airway allowing exhaled air to flow though her vocal cords when using the Passy Muir Valve.

This procedure would not help with resolving her vocal cord paresis, but it would help her to develop her speech.

Obviously this was not the news that we wanted to hear, and it did take the wind out of our sails.

Since we have received nothing but good recommendations and advice from Dr. Inglis from the start, we both made the decision to schedule Sadbh in for this procedure on the 28^th of March.

While we were scheduling her surgery, she drew the attention of all the staff in the clinic and was in her element flirting with everyone.

Afterwards we headed up to the NICU front desk to see if any of her nurses were working and we got to catch up with Jen, Sue and PJ.

PJ was the first of the Children’s NICU nurses to meet Sadbh as she was responsible for transporting her from Swedish to Children’s when she was two days old.

Coincidentally, we also ran into Robin, Sadbh’s Occupational & Physical Therapist.  Robin was thrilled to see how well Sadbh was developing and Sadbh was fascinated with Robin’s earings.

Even all the front desk staff remembered her and were delighted to see her.

Despite the emotions that both Katie and I were going through after our meeting with Dr. Inglis, it was humbling to see all the parents coming and going from the NICU, and to think of how far we have come since last year.

New photos.

Photos from December 28.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 322 February 27th, 2012

Sadbh joined us in bed this morning around 1am after waking up and refusing to go back to sleep. As soon as she was tucked in, she fell into a deep sleep and did not stir until close to 5am, when she woke up for a quick breakfast.

Afterwards, both she and Katie got to snuggle and sleep in for another couple of hours.

Her nurse Molly, from Children’s, was working today, and was able to help my father with trach care.

After Sadbh woke up from her nap and had lunch, all three of them took advantage of the sunshine and headed up to Capitol Hill for a stroll.

She was so full of energy when I arrived home.

I had her laughing for ages with non-stop tickles, and blowing on her belly. Even though her laughter is silent for the most part, it is such a delight to get her going.

When Katie arrived home, she took care of Sadbh while I answered a few work e-mails, and next thing, I felt Sadbh tapping my shoulder and looking at me with an expression of disappointment that I was not focusing my attention on her.

She was exhausted when it came time for bed, and after a bedtime story and some snuggles, she was asleep by the time she laid her head down.

Tomorrow is a big day for Sadbh as we have her ENT check up with Dr. Inglis in the afternoon.

We are not expecting a huge change, however it will be interesting to see how much of an improvement she has made since her last visit three months ago.

New photos.

Photos from December 27.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 321 February 26th, 2012

Sadbh was wide-awake and out of her swaddle at 1am this morning. Katie tried her best to get her comfortable and back to sleep, but she was not having any of it.

After a quick feed, she joined us in bed and fell into a nice deep sleep until 6.

She had a great morning and was full of energy and fun.

We each took turns taking care of her throughout the day, and later in the evening we headed to University Village to do a spot of shopping.

It was a cold day, but Sadbh was bundled up nice and warm in her stroller. She loves shopping and today she had a great time pointing out all the lights.

As we were leaving one of the stores, we bumped into Jen who cared for Sadbh while she was in the NICU at Children’s. It was great to see Jen and catch up. Jen was fantastic with Sadbh while she was in the hospital, and we were so fortunate that she was one of the great nurses looking after Sadbh.

After we were done shopping, we headed out for a bite to eat and for desert, Sadbh got to taste chocolate for the first time. She didn’t seem to be too interested at first, but it did not stop her from having a couple more tastes.

New photos.

Photos from December 26.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 320 February 25th, 2012

Sadbh slept great through the night, and only got restless at 4:30 Saturday morning when she had broken through her swaddle.

It was easy to get her swaddled and back to sleep, and she slept soundly for another hour when she awoke for breakfast.

Katie had been out for dinner with Suzie for dinner and a couple of drinks Friday evening, so rather than feeding Sadbh directly from the source, I ran down to the kitchen to heat up a bottle.

Obviously this takes a lot longer than usual to satisfy Sadbh’s hunger, and she let us know all about it.

I have never seen a crankier baby, she was livid and at one point, she flung her binky across the room.

As soon as I handed over her bottle, she did not hesitate to drain it down.

After her bottle, a diaper change and a cuddle, it was back to sleep for a couple of hours.

The building contractor was due to work on our house again today, unfortunately they were a couple of hours late and arrived just as we were about to do trach care.

Even though Sadbh was very tired and was ready to sleep, it took us a lot of effort to get her to settled down and finally to sleep.

Later in the day, we got to join Cormac for his Christening and to celebrate the event with our friends.  

We dressed Sadbh up in a lovely dress and cardigan and headed off.

It was a fun evening and Sadbh really enjoyed herself.

When it got past her bedtime, Sadbh was very tired, but still did not want to miss out on the action. We had set up her buggy for her to sleep in, but she was not having any of it.

Eventually it was time for us to take her home and to bed for a good nights rest.

New photos.

Photos from December 25.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 319 February 24th, 2012

Sadbh slept really well through the night, considering not having a nurse looking after her.

She did break loose from her swaddle around 2am, and had to be bundled back up.

It was time for breakfast around 4:30, and she joined us in bed for a snooze right after. I noticed that she needed to be suctioned, and when I went to use her suction machine, it would not work.

Since it is such a loud device, I took it into the spare room to figure out what was wrong, and after dismantling most of it, I discovered the problem. Once everything was reassembled, we were good to go and after a quick suction of her trach, Sadbh was able to breath much easier.

When it came time for me to head out to work, both Katie and Sadbh were in a deep sleep and were comfortable cuddled up with each other. I wanted to take a photo, but I did not want to disturb them with the flash of my camera.

Since my father has been so busy caring for Sadbh over the last week or so, today he got a chance to relax and headed out to spend the day with a couple of friends.

Katie’s mum came over to help with trach care, and all three women headed off to Ikea for a bit of shopping.

Sadbh was in her element in Ikea today, especially when she arrived in the lighting department. She couldn’t believe her eyes with all the lights and she was pointing and doing the baby sign for lights everywhere she looked.

Sadbh was in such a playful mood this evening. Since I’m finally over the worst of my cold, I was able to catch up on missing out on all the playtime throughout the week.

She did not nap throughout the rest of the day and when it was time for bed, she was exhausted.

New photos.

Photos from December 24.

Have a great weekend,

Wayne, Katie and Sadbh.

Sadbh’s update – day 318 February 23rd, 2012

Sadbh had yet another excellent night sleep and did not wake until moments before Larissa’s shift ended at 6am.

Sadbh had her breakfast and afterwards, it was playtime and snuggles with Katie.

Eventually she went back to sleep, and had a very long sleep in.

Later on in the morning, Peggy came by to help my father with trach care. Since Sadbh had such a long sleep in, trach care was later than usual, but everything went well as my father and Peggy waited until she was very tired before starting.

I arrived home later than usual, and Sadbh was taking yet another nap.

This evening we tested out her Passy Muir Valve again, and this time we used the one without the hole punched in it. She did seem to struggle to exhale, however she showed slight signs of air leakage escaping through her mouth.

She struggled and showed signs of distress, so we switched the PMV with the one with the hole. She managed a lot better with that one, however we will start using the PMV without the hole more often so she can start getting used to the pressure on her vocal cords.

Since we do not have nurse care tonight, I’m hoping that she had a good night sleep and doesn’t get too restless.

New photos.

Photos from December 23.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 317 February 22nd, 2012

Sadbh slept great again last night. When she started to stir around 3am, Larissa was quick to react and suctioned her trach. It did the trick, and Sadbh slept sound until almost 6am.

I’ve been fighting a cold since yesterday, and have been keeping my distance from Sadbh so as not to get her sick. When I am around her, I wear a facemask, just to make sure I keep my germs to myself.

As soon as I popped my head into her room, she stared and pointed at me. Even when I moved to the other side of the room, she kept pointing.

She had a great day with Granddad, and later in the morning, Peggy came over to hang out and help with trach care.

It was a nice day, so Sadbh and my father went for a long walk around the neighborhood.

She has not been out much in the last few days, so it was good to get some fresh air for a change.

New photos.

Photos from December 22.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 316 February 21st, 2012

Sadbh had a great night sleep and slept through until almost 6am. She did have a moment of restlessness, however Larissa took care of her and she slept sound for the rest of the night.

After breakfast, Katie asked Sadbh to show Larissa the light, and Sadbh pointed to the ceiling light and used the baby sign to let Larissa know what she was pointing to.

She had a great day, and she got to play with Katie’s mum after not seeing her for over a week. Peggy was in Mexico on a humanitarian mission, and was eager to see her little Spuddy-Buddy.

Sadbh was in for a treat when we got home from work as she got a new pair of shoes. Katie ordered a lovely pair online, and they finally arrived today.

They are quite stylish, and go really well with Sadbh’s skinny jeans.

When it came time for bed tonight, Sadbh would not settle down, and spent the whole time pointing at everything in her room. Eventually Katie was able to get her swaddled and it was not long before she fell asleep.

New photos.

Photos from December 21.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 315 February 20th, 2012

Since Monday is a national holiday, Sadbh got to spend another night upstairs as neither of us had to work today.

She had a rough night though, and did not sleep well.

This went on all night, and around 5am, she joined us in bed where she seemed to sleep a little better.

Katie and I were glad for the day off as all three of us got to sleep in until 8am.

Sadbh was full of beans when she woke up and after breakfast, all she wanted to do was play.

The weather was quite miserable today, so it gave us all a good excuse to spend as much time as possible playing with Sadbh.

Trach care was very easy today since she was very tired and slept soundly throughout.

We gave Sadbh one of the dolls that my mother sent over with my father and Sadbh went straight for the binky. She loves her binkies. In fact, when it came time for bed tonight, she grabbed three of her binkies and tried to figure out how to rotate them each without having to drop one. Quite funny and cute.

New photos.

Photos from December 20.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 314 February 19th, 2012

Sadbh had a much better night sleep, and did not wake until 5am. After breakfast and a quick snuggle, she joined us in bed for another couple of hours.

Over the last couple of days, we have noticed that Sadbh has become increasingly mobile and it is quite the ordeal to keep her still when changing clothes, diapers, suctioning her trach, etc.

We have also noticed that we cannot leave her unattended for a split second, otherwise she is off crawling.

This morning when we were getting her ready, Katie turned her back to put the suction catheter back, when Sadbh turned around and crawled to the side of the bed and fell off. Sadbh was fine, but poor Katie got the fright of her life, and let out a big scream. When I ran into the room, both Katie and Sadbh were bawling their eyes out, however fortunately no one was hurt.

Sadbh had her first taste of egg today. She wasn’t quite sure what she thought of it, but was still interested enough to play with it for a while. After she was done playing with it, she dumped most of it on the floor.

It was a very lazy day for Sadbh, and she spent most of it playing with her toys, and taking turns playing with each of us.

New photos.

Photos from December 19.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 313 February 18th, 2012

Sadbh kept waking up throughout the night. At 2am and 3am she needed to be re-swaddled and tucked back to bed. At 4, she was hungry for breakfast, and afterwards she joined us in bed.  At 6, she was done sleeping and wanted to play. She eventually fell asleep around 9, but was awake again at 10.

Sadbh’s cousin Josh, who recently turned one, just started walking. While we were Skyping today, Josh showed off his new skills to Sadbh, and she was impressed.

We had contactors coming to the house to install shelves, and since Sadbh’s schedule was completely off, we figured that we would have to wait until the evening to manage trach care.

As we were getting ready to leave the house for the afternoon, Sadbh was getting very tired, so we decided to take advantage of the opportunity and started trach care. The contractors were kind enough to take a 30 minute break, so we were able to get things done without any noise.

Sadbh slept sound throughout, and once we were done, we bundled her up and headed out for the afternoon.

Sadbh was in for a treat. We were headed off to visit Clodagh and Cormac.

The Crean family had just returned from a holiday in Hawaii, so it was good to catch up and hear all about their trip. Sadbh spent the evening hanging out and playing with her friends.

New photos.

Photos from December 18.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 312 February 17th, 2012

Sadbh had a very good night sleep, although she did wake up for a feed at 4am. Thankfully, since she was sleeping in her cot next to our bed, it did not take long to feed her. She does get very sweaty when she sleeps, so Katie figured it was a good time to change Sadbh’s pajamas. Afterwards, she joined us in bed for another nap.

I usually sleep facing out of the bed, and this morning I felt a little finger tapping me on my back. As soon as I turned around, I was greeted with a big smile.

She had a great morning playing with Katie and Granddad, and when it came time for trach care, she slept through it without any problems.

Later in the day, Aoife and her son Conor stopped by for a play date. Conor is two and a half months younger than Sadbh, and he’s almost 10 pounds heavier than her. We are certain that he’s going to be a rugby player when he’s older.

Sadbh and Conor had a great afternoon together and Conor was able to show off his new crawling skills.

Later in the evening, our friends Ian and Olga came by for dinner, and fortunately, Sadbh had just woken up from a nap.

She was in a very playful mood this evening and had a great time with both Ian and Olga.

It turned into a late evening for Sadbh and she was almost an hour late going to bed. It was very difficult to get her to lie still when trying to swaddle her, but she finally surrendered.

She had a fantastic day and got to hang out with a lot of great friends.

New photos.

Photos from December 17.

Have a great weekend,

Wayne, Katie and Sadbh.

Sadbh’s update – day 311 February 16th, 2012

Sadbh slept right through the night and did not wake up until 4:45am. Usually when she wakes up, it takes a while for her to fully wake up, however this morning she woke right up and was ready to go.

After breakfast, she slept for another couple of hours, and since we did not have nurse care throughout the day, my father was flying solo.

Sadbh was ready for her nap just around lunchtime, so Katie headed home to help my father with trach care. Sadbh fell into a deep sleep, allowing for an easy trach care, and she slept for another hour afterwards.

She had a fun day overall, and tonight she is sleeping upstairs with Katie and myself.

New photos.

Photos from December 16.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 310 February 15th, 2012

Sadbh slept great until around 2:30am, and then she started to get restless. Larissa had to suction a few times throughout the rest of the night, and managed to keep her asleep.

She finally woke up at 4:45am, and Katie was called down for breakfast. After breakfast, she had a coughing fit and ended up bringing up some of her food.

After cleaning Sadbh up and putting new clothes on, it did not take long to get her back to sleep, and when I popped my head in to kiss her good by on my way out for work, she was sound asleep.

A few hours later, after her second breakfast, she had another coughing fit and ended up puking up everything all over the kitchen floor.

Katie and my father got her cleaned up and changed again, and my father fed her some cereal, which she kept down.

Sadbh’s nurse today was Kara from Children’s Hospital, and Sadbh had a great time.

We have had so many issues with most of the nurses from the nursing agency, however Su Jin from Children’s has recruited a group of great nurses that can work from time to time, helping out and providing a break for my father.

They are all fantastic with Sadbh, and you can tell that she has a great day when they are around.

It was another lovely day, so Sadbh, my father and Kara headed down to Madison Valley for a stroll.

They arrived home shortly before I did, and when I walked up to the back door of the house, Sadbh was there with a huge smile waiting for me.

Since she had not slept for a few hours, it was time to put her to bed, and despite all her excitement, she fell into a deep sleep in no time.

She woke up almost an hour later and it was perfect timing since Katie had just arrived home.

We had a great evening playing hide and seek, and while I was hiding, Sadbh started to use the baby sign for “daddy”. Needless to say, we were all impressed.

When it came time for bed, Katie noticed that the trach humidifier was not heating up as it should have been. We were worried that we would have to call the medical equipment company out to the house to change the unit, however, after troubleshooting the problem over the phone with our rep, we were able to determine that the temperature probe had gone bad, and we were able to change it out with a spare that we had.

We were very relieved, since the last time this happened, Sadbh’s trach dried out over the course of the night, and she ended up with a bad cold that required constant suctioning.

New photos.

Photos from December 15.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 309 February 14th, 2012

Sadbh had an excellent night sleep, which meant that Larissa had a boring night.

Shortly after 5:30am, Sadbh woke up and it was time for breakfast. She was in a fantastic mood and could not stop pointing at everything in her room.

As soon as Katie arrived in the room, Sadbh’s eyes lit up and it was time for breakfast.

We were fortunate to have Molly looking after Sadbh again today. This also takes some of the pressure off of my father, however I think he still spends most of the time playing with Sadbh regardless.

Both Molly and my father were able to manage trach care quite easily today and Sadbh slept for over two hours afterwards.

The weather was still quite bad today, however there was a nice break in between showers this afternoon, so Sadbh, Molly and my father went for a long walk around the neighborhood for almost an hour. Thankfully they avoided the rain, and they all had a good time.

Sadbh received her first Valentine’s card today, and it went straight into her mouth. Maybe I should have gotten her an edible card.

New photos.

Photos from December 14.

Happy Valentine’s Day,

Wayne, Katie and Sadbh.

Sadbh’s update – day 308 February 13th, 2012

Sadbh had a restless night sleep, but thankfully Larissa was working, so she made sure that Sadbh was as comfortable as possible throughout the night.

She slept until 5am, when Katie was called down to serve breakfast. Sadbh was full of beans after breakfast, and played with Katie for a short while.

Molly, from Children’s is covering a couple of days this week, so she and my father were able to tag team caring for Sadbh.

Obviously Sadbh was having a great time as she only took a couple of short naps throughout the day.

She was 30 minutes into her second nap when I arrived home from work. She did not sleep for long, but you could tell she was exhausted tired.

We gave her a bottle, and thought she would like to play for a while, however she was very upset and wouldn’t stop crying.

It was very upsetting, so I figured that it would be best to bundle her up and cuddle her back to sleep. It took a long while, but it worked, and Sadbh fell asleep in my arms. Not long afterwards, I also fell asleep.

Both of us must have been quite tired as we slept for almost an hour.

Katie had been home for quite some time, but figured it would be best to leave both of us sleep on. When we woke up, the sleeve of my shirt and the cushion was soaking wet from Sadbh’s sweaty head.

Sadbh has been using her index finger a lot lately to point at everything and everyone.

This evening she was in Katie’s arms while I was preparing dinner. All of a sudden, Sadbh farted, and without hesitation, she pointed at me and had this accusing look on her face. It was a priceless moment.

Sadbh seemed ready when it came bedtime, however it took a long time to get her settled in and off to sleep. She was fascinated with the decorations in her room and sleep was the furthest thing from her mind.

New photos.

Photos from December 13.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 307 February 12th, 2012

Sunday was another fun day for Sadbh and for the rest of us.

The night started off well for Sadbh, but unfortunately when I came to bed a few hours later, I accidentally woke her up, and it was a serious effort from both Katie and I to get her back to sleep.

Once asleep, she was out for the count and did not wake up until after four. She had a quick breakfast, and it was snuggle time with us in bed for another few hours.

After trach care, she had a very short nap, so we decided to bundle her up and head downtown for a couple of hours.

Sadbh loved the hustle and bustle of the market. She was fascinated with everything from the flying fish, to the flower stalls, even the street musicians. It was a lovely day, so you can only imagine how busy it was.

Eventually the excitement got to her and despite fighting hard to stay awake, she could hardly keep her eyes open.

She had a nice long nap while we drove over to Fremont. She was still asleep when we arrived, so Katie stayed with her in the car while my father and I walked around. Unfortunately by the time Sadbh woke up, most of the stores were closed, so it was time for us to head home.

After dinner, I was showing Sadbh one of her picture books. We came to a couple of pages that had a picture of girl on one page, and a picture of a boy on the other. When I asked Sadbh to point at the girl, she got it right. I’m not sure if it was luck or not, but I was certainly very impressed.

The excitement of the day really wiped her out, so going to bed was very easy tonight.

New photos.

Photos from December 12.

All the best,

Wayne, Katie and Sadbh.