Sadbh’s update – April 30th, 2012

Sadbh had a restless night sleep and woke up shortly before 1am for a late night snack. It was more like a full on feast as she fed for what seemed like ages.

After her feeding, she dropped back into a deep sleep and did not wake until 6:30.  She had another feeding, then dropped back to sleep until almost 7am at which time she woke and had large breakfast of banana, cereal, toast and egg yolk.

Nadia was working today and Sadbh had a great time playing and showing off her new baby signs.

Trach care was earlier than usual today since she had such an early start to the day.

She started falling asleep before bath time, so Nini and Nadia had to spring into action to get everything set up.

Sadbh had a deep sleep for almost two hours, and woke up with a nice big appetite.

As soon as she was done eating, the fun and games started again.

Sadbh had such an exciting afternoon that she had to take a second nap and after an hour, she woke up in time for my arrival home from work.

Her evening was spent playing around and she got extremely excited when I showed her a slideshow of her photos from yesterday on my laptop.

At one point she started to chew on Nini’s arm, and even left an impression of her two teeth in Nini’s wrist.

We tried testing her Passy Muir Valve again today, and despite tolerating the modified one, she did not last more than a minute or two with the non-modified PMV.

Interestingly, we could hear some serious air leak coming through her mouth tonight, especially when she was not using the PMV.

She had a great evening and received a visit from the tickle monster just before bedtime. She was laughing so hard it was difficult to stop.

New photos.

Photos from April 30 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 29th, 2012

Sadbh slept great and joined us in bed shortly after midnight.

She needed suctioning a few times, but always fell back to sleep afterwards.

Breakfast was served just before 8am, and when she was done she leaned into Katie, took her binky out and gave her a big kiss. What a way to start the day.

Sadbh had a huge appetite today and ate non-stop until her first nap at noon.

She even got to drink cows milk for the first time and she loved it.

Just before her nap, she got the chance to Skype with Granddad and Nana back in Cork.

She lit up as soon as she heard their voices, and once their image came up on the screen, she was over the moon.

My parents were telling us about a young toddler from Dublin that has a rare digestive order and who is about to go to Children’s in Boston to undergo an operation to construct a new esophagus.

My parents showed us a photo of this little guy and his twin brother and Sadbh started smiling and making the sign for babies.

Sadbh was exhausted tired when it came time for her nap and Katie had to work hard to get her to sleep.

Once she drifted off, trach care was very straightforward.

Obviously, we take trach care very seriously and her neck and stoma (the hole in her neck where the trach fits) is in excellent shape as a result.

Most days, everything looks great, and all she needs is her neck cleaned, powdered with Nystatin and a fresh dressing around the trach along with a new trach tie.

Occasionally we find that there is bruising or sores around her neck, so we have to treat those quickly so it heals and so she is comfortable.

This evening, we met with a few of our friends to discuss plans for the up-coming High Five Sadbh Guild Kickoff Event drive, and Sadbh came along for the walk. It was a warm overcast day and Sadbh was happy checking out everything.

She never ceases to amaze us. When a plane flew overhead, Sadbh did the baby sign for airplane. And later she did the sign for car.

She comes up with a new sign every day or so. It’s very inspirational and shows how intelligent she is.

New photos.

Photos April 29 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 28th, 2012

Sadbh woke up twice throughout the night and had a quick feeding each time. Kind of like a vampire.

By 6:30, she was ready to start her day, regardless if anyone else was ready or not.

Ali-Baba and Kirk sold their house and had a yard sale to get rid of a bunch of stuff before they move, so Katie headed out to help quite early.

This meant that Sadbh and I got to hang out and spend the morning together having breakfast and watching Sadbh’s baby sign DVD.

We had a fantastic morning and after breakfast both of us got to play with all of Sadbh’s toys in the living room.

Later on we Skyped with Nini’s sister Kati in Munich, until I noticed a strong odor indicating that it was time to change a certain young girls nappy.

Sadbh was extremely affectionate to me. I’ve been asking for kisses for the last two weeks and have gotten none.  But this morning, she made up for all that and showered me with kisses.  It was adorable.

Later on, when Sadbh started to get tired, we figured it was time to manage trach care.

As Nini prepared the cleaning supplies and I got Sadbh ready for her bath, she started to do the baby sign for bathing.

Every day she amazes us with new signs that she learns.

It was the first time that both Nini and I worked together on trach care and Nini managed the cleaning.

Sadbh was in a deep sleep throughout, and Nini made it all look very easy.

I could sense that she was extremely nervous, but she did an incredible job and was very calm and thorough.

Sadbh slept for another hour or so, and shortly after she woke up, Katie arrived home from the yard sale.

Sadbh got to check out Bellevue Square for the first time ever and I think I made a huge mistake bringing her there.

She had a fantastic time and was waving and smiling at everyone she met.

It was surprisingly busy, considering that it was such a beautiful day and Sadbh was pointing out all the babies that she seen. She was very excited and every so often she insisted that we would bring us to some of these babies. It’s funny how as parents that we start up conversations with other parents, where before we would have kept to ourselves.

Things got a little bit tense for me when we walked though the shoe and then the makeup department in Nordstrom’s. In the shoe department Sadbh got very excited and started pointing at all the shoes that she liked. As we passed through the makeup department all the ladies smiled at Sadbh and Sadbh was more than delighted to return the smile.

Katie had a very proud look on her face, while I ended up looking terrified.

Sadbh also noticed a bunch of balloons in the distance, and when Katie brought her over to see what they were for, a very kind little girl gave Sadbh one of her balloons since she had two.

Sadbh had a great day and it was a lot of fun for me to get to spend the entire morning with her.

New photos.

Photos from April 28 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 27th, 2012

Sadbh had yet another fantastic night sleep, but did wake a little earlier than usual.

She had a quick snack at 4, and fell back to sleep for another couple of hours after joining us in bed.

Mid morning, Sadbh got to visit Katie’s office and met a few of her colleagues. Yet again, she was full of smiles and flirts and she had a great time.

Sadbh had her 12 month check up with Dr. Bowe today, and she did great.

She received vaccination injections for Chicken Pox and MMR for Measles, Mumps and Rubella

She also took a Hemoglobin test to see if she was anemic, and thankfully she passed.

Considering the three shots that she received, she did not even flinch.

Unfortunately her nurse at the pediatrician’s office is retiring on Tuesday. Nurse Marie is fantastic and will be missed.

Since it was a very busy morning, trach care was managed after Sadbh got home and had a bath. Everything went well, and Sadbh slept for an hour and a half.

Later in the evening, we all got to Skype with Katie’s brother and his three girls in Singapore.

Sadbh had fun smiling and waving with her cousins, and even tried to offer them tea from her new tea set.

After Skyping with Karby and his girls, we bundled Sadbh up and headed off to meet some of the gang for dinner.

It was a fun evening and Sadbh got to play with her friends Cormac, Clodagh and Dylan. At one stage, she tried to grab Cormac’s hand, but he was not having any of it. He started crying, and Sadbh had a very confused look on her face.

Her evening was fantastic, and she could hardly keep her eyes open on the drive home.

New photos.

Photos from April 27 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 26th, 2012

Sadbh slept great last night and thankfully did not need to be suctioned all night.

She woke shortly before 6am for a quick breakfast and then dosed off to sleep until 8:45.

She woke up very happy and even though she did not realize that today was Granddad and Nana’s last day, she was eager for the fun to start.

Ali-Baba came by to see Sadbh and to say farewell to my parents.

Sadbh loved all the attention that she was getting and even showed off some new noises that she was making, even without the Passy Muir Valve.

Granddad helped Nini with trach care after Sadbh fell asleep and since she was in such a deep sleep, everything went very well.

On the way to the airport, we told Sadbh that Granddad and Nana were heading back in the computer and she will get to see them in a day or two when we Skype.

It was a very emotional farewell, as we know we will not see them both for a while.

Sadbh was waving like crazy and blowing kisses.  Even after they passed through security and disappeared around the corner, she was still waving and kissing like mad.

Sadbh knows that Granddad and Nana love her unconditionally and hopefully someday soon her vocal cords will heal so we can take her back to Ireland to visit her grandparents there.

New photos.

Photos from April 26 2011.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – April 25th, 2012

Sadbh was quite restless after going to bed last night, and after Larissa arrived, we decided to give some Tylenol to ease her discomfort.

It seemed to work, and Sadbh slept right through until 5:30 for a quick early morning breakfast.

After breakfast, she fell back to sleep until 8am.

At 8am, she was full of smiles and ready for the day to start. Nadia, who is a new nurse, started working with Sadbh today. Sadbh was thrilled and it seems that Nadia was really good with Sadbh.

Sadbh received a parcel in the post yesterday from Sean and Meghan, and it contained two wonderful buntings with her name spelt out. She also received a lovely dress.

Last night, after Sadbh went to bed, Katie and Grand-dad hung the buntings up in the room where Sadbh has her breakfast. As soon as she entered the room, she noticed something different, and pointed to the flags. She was smiling from ear to ear and was very excited with her gifts.

Ali-Baba came by to hang out, and to everyone’s delight, she brought cookies. Sadbh even got to taste these cookies. Sadbh could not get enough cookies and kept making the baby sign for more. She ended up getting very hyper due to the sugar, so trach care was a little later than usual today.

Sadbh will never get bored, especially since she had a house full of great playmates.

I arrived home to a large welcome committee and in the middle of everyone there was Sadbh with a huge smile.

After washing and sanitizing my hands, it was time for some play with Sadbh.

She had a great evening and I even got a few kisses. It was the first time in a while that I received a kiss on the mouth from Sadbh, despite the fact that I had not shaved in a few days.

New photos.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 24th, 2012

Sadbh slept well until just after 3 when she woke up looking for a late night feeding.

After a quick bite to eat, Sadbh was back to sleep, however Katie was called down again because Sadbh had rolled over and bumped her head.

She was extremely upset, but Katie was able to comfort her back to sleep.

Sadbh finally woke up at 6:30, and after breakfast she was ready for playtime.

Nini and Nana dressed Sadbh up in a lovely white dress that Nana brought over from Ireland, and Sadbh looked like a Peruvian Princess.

Her day was great, and she could not stop making tea for everyone.

Each time she would give someone a cup of tea, they would clink their cup against hers and say cheers. Soon she was doing this back to them.

Destiny was working today, so Sadbh had plenty of people to play with and was on the receiving end of a lot of attention. Even Ali-Baba came over to join in. I could only imagine the fun that Sadbh had.

I got home later than usual and was greeted by Sadbh when I arrived at the back door. She gave me the biggest smile and had a look of serious excitement on her face. Nothing beats a welcome home from Sadbh.

We had a couple of friends over for dinner tonight, and Sadbh got to show Keith and Charlene how good she is at standing on her own. We have started feeding her some of the same foods that we cook and tonight she could not get enough dinner. She obviously has to on her table manners since she barfed up all her food after a coughing fit.

This did not deter her and it only seemed to free up some space in her belly for another helping of food.

Sadbh is not shy and was happy to cuddle with Keith and Charlene. She loves her photos throughout the house, especially the two in our dining room.

After dinner, it was time for bed so she did the rounds kissing everyone good night before hitting the sack.

She seems to have teeth coming in as after an hour of sleeping she got very restless and was holding onto the side of her face. I rubbed some teething gel onto her gums to offer relief and I hope she has a restful night sleep tonight.

New photos.

Photos from April 24 2011.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – April 23rd, 2012

Sadbh had a good night sleep and only woke up once at 1am for a late night snack.

Within half an hour, both Sadbh and Katie were back asleep.

When I was ready to head out to work around 5:30, I could hear Larissa singing to Sadbh to keep her sleeping. Her heart rate was starting to escalate, so Larissa thought it would be best to switch off the lights and to sing softly to keep Sadbh relaxed. It worked a treat and Sadbh slept for another hour allowing Katie to also sleep in a little.

When Sadbh woke up at 6:30am, she was eager to play, but required a lot of suctioning first.

Molly was working the day shift and Sadbh was in her element with so many people to play with.

She was smiling from ear to ear and was signing up a storm.

For breakfast, she figured out the sign for cereal and kept doing it until she had her fill of cereal.

Nini managed trach cleaning while Molly held Sadbh’s trach in place. Even though she still has moments of nervousness, Nini is turning out to be quite the expert.

She must have been exhausted, because Sadbh slept for 2 hours after trach care.

It was another beautiful day, so as soon as Sadbh was ready, Nini and Molly loaded up the stroller and got ready to for a nice long walk. Unfortunately, Granddad had the spare key, so Nini could not leave the house.

Sadbh explored the back yard instead, and had a great time playing with all the pinwheels.

As she walked around the yard, she started picking up the leaves on the floor and would hand them to Nini as a gift.

Eventually, Nini and Molly’s hands were full of leaves, and Sadbh was one proud baby.

She did not nap for the rest of the day and was surprisingly playful right up until bedtime.

As soon as she was bundled up in her bed, she dropped off into a deep sleep, and will hopefully stay that way for the rest of the night.

New photos.

Photos from April 23 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 22nd, 2012

Sadbh needed nursing every couple of hours through out the night. Once she was fed, she fell back to sleep very quickly each time.

We had an early start to the day and I received my morning wake up call from Sadbh tapping me on my shoulder.

To help with Sadbh’s possible allergy to pollen, we have been using a humidifier in our room.

Sadbh’s humidifier is designed to look like a frog, and when Sadbh saw it this morning, she started to make the baby sign for “frog”.

We had a fun day planned, so we needed to get up and running as soon as possible.

Sadbh had a delicious breakfast and got some playtime with daddy while Katie got ready. She loves playing with her new tea set, and the duck puppet that she received from Katie’s uncle and aunt from Portland. She even figured out how to get her hand into the duck.

We had planned a trip over to Bainbridge Island for the day, and just as we were getting ready to head to the ferry, we noticed that Sadbh was getting sleepy, so we decided to do trach care and take the next ferry.

Sadbh was a superstar and trach care was very straightforward.

She slept on for anther 30 minutes or so, and once she woke up, we loaded the car and headed off downtown to the ferry terminal.

Our timing was perfect and the ferry left within a couple of minutes after we boarded.

Sadbh got in some great posing with Seattle and the Space Needle in the background, and was very happy with the wind blowing in her face.

The crossing was quick, and traffic was light once we arrived on Bainbridge Island.

We were headed towards the Bloedel Reserve on the far end of Bainbridge Island.

The Bloedel Reserve is public garden that started 1950’s and opened to the public in 1988.

We all had a fantastic time, and Sadbh got to practice her walking through the lawns.

At one point as Katie was carrying Sadbh through a wooded trail, Sadbh gave a group of oncoming women the biggest smile ever. They were smitten and all three started to take photos of our little princess.

After a few hours exploring the gardens, we headed off to Poulsbo for a wander and a dinner.

Sadbh had a great time flirting with the staff and the kids at the next table. After she was done eating, Nini brought her for a walk around the restaurant and Sadbh made a b-line for a table of diners. They were all doting over her when she blew them a big kiss, and they melted. It was quite the sight to see.

Sadbh was very affectionate on the way home in the ferry. She could not stop giving Nana kisses. It was adorable to see and Nana was over the moon with all the attention that she was getting from Sadbh.

We arrived home just in time for Sadbh’s bedtime. She was exhausted tired after such a fun day. Just before bed, Sadbh had a little snack and a bath. Unfortunately she had a coughing fit just before her bath and threw up all her food.

She was right as rain after her bath, and once she had her pajamas on, she fell into a nice deep sleep.

Larissa is back on shift tonight, so Sadbh is sleeping in her own room. Hopefully she will have a nice long sleep.

New photos.

Photos from April 22 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 21st, 2012

Sadbh slept a lot better than expected last night and only needed to be suctioned a couple of times.

She was in a great mood when she woke up this morning.  When Katie heard her moving around in her pack-n-play and looked down on her, Sadbh was sticking her tongue out at her and giggling.  It was a great way to start the day and Sadbh was eager to get downstairs for breakfast and for the fun to begin.

For breakfast, my mother made Boxty, which is a traditional Irish potato pancake. Sadbh got a little taste and immediately wanted more.

After we were done with breakfast, Sadbh got to open a present that she received from Clodagh and Cormac last week. She couldn’t contain her excitement while Granddad helped unwrap her gift. It was a tea set and she was so pleased with herself.

Our house has been full since Sadbh was born, so I installed another toilet today. This should hopefully alleviate the need for people to rush so the next person can use the bathroom.

Katie’s Uncle David and Aunt Jeanne were in town from Portland and stopped by for a visit.

Sadbh is certainly not a shy kid and was quick to play and even climb into Jeanne’s arms.

It was a fun evening and it was great to catch up. Sadbh showed off her walking and even showed off her two Jack-in-the-Box toys.

Just before bedtime, Sadbh was with Katie and Nini in the kitchen and all of a sudden she pulled her trach nose off and it went flying into sink.

With that, it was time to get Sadbh changed into her pajamas.

Unfortunately, Sadbh had another coughing fit, however, this time, she used one of the gauzes and started to wipe her trach. It was as if she was wiping her nose after a sneeze.

She worked both Katie and myself hard when it came time for bed. She would not lie down, and was bouncing around her cot like crazy. We figured that she would eventually wear herself out, but it was not the case. She wore both of us out.

After an hour or so of fighting sleep, she finally dozed off into a deep sleep.

New photos.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – April 20th, 2012

Sadbh had a terrible night sleep and was coughing a storm all night. We were up suctioning most of he night. At one point, Sadbh thought it would be a great idea to pull on her trach and ended up pulling off a chunk of the Poly-membrane dressing from under her trach. This meant that we had to insert a replacement piece between her trach and neck.

It was a very trying night, and we were all exhausted to say the least, and by the time I headed out to work around 5:45, both Sadbh and Katie were in a deep sleep.

Katie got to interview a couple of new nurses from the agency today and we are hoping to interview a third nurse sometime next week.

We order her nappies in bulk from Amazon, and we received this months order today in the largest box ever seen. The box could have contained triple the amount of nappies, but that did not stop Sadbh Nana and Granddad from having fun with the packaging.

Ali-Baba stopped by to join in on the fun and helped out with trach care. Sadbh was in a very deep sleep throughout trach care, but afterwards she had another coughing fit and woke herself up.

It was shaping up to be a nice day, so all the ladies headed out into the back yard and practiced using the Passy Muir Valve. Unfortunately, Sadbh could not exhale properly and ended up puking.

Our suspicions are getting stronger that the Botox is not working, however we are also thinking that she might have pollen allergies.

In the afternoon, Granddad and Nana took Sadbh for a nice long walk around the neighborhood, allowing Katie to take a well-deserved nap.

Tonight, after we brought Sadbh to bed, the coughing fits started and after almost an hour of solid coughing, Sadbh got sick all over Katie. Team Sadbh (Granddad and Nini) sprung into action and arrived upstairs to help Katie and myself clean up the mess and get Sadbh comfortable again.

Eventually she fell asleep, but it took another 40 minutes or so before her heart rate and blood oxygen level to stabilize.

Katie did some research on allergies, especially with babies and toddlers and learned that birch trees are quite bad for this. This is very unfortunate since we have three of them in our back garden.

Sadbh has her 12-month appointment with Dr. Bowe next week, so hopefully we will learn more about this and which tests we can take to see if this is what’s affecting her.

New photos.

Photos from April 20 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 19th, 2012

Sadbh had a rough night and starting at 11pm she woke frequently as if she was in pain.  Rubbing her back seemed to help her back to sleep, but only for a little while before she woke again. She was extremely restless and very upset.

When she got up for breakfast, Nini suctioned her trach only to find that her secretions were thick and almost plugging her airway. Thankfully her heart rate and temperature are normal, so we are hoping that the thick secretions will not amount to much.

Lately, in an effort to grab our attention, Sadbh has been grabbing her trach. Once she is told not to do that, she looks you dead in the eye and wags her finger at you, while still grabbing at her trach.

Today she was doing it more than usual, so Nini and Sadbh’s Grandparents made every effort to distract her.

Just before noon, Sadbh was just tired enough for trach care. Nini suctioned another big thick secretion out of Sadbh’s trach, and as soon as it was out, her blood oxygen level went back up to 100%.

Trach care was very straight-forward and Sadbh slept for almost two hours.

After she woke up from her long nap, it was time for a big lunch and then Nana dressed Sadbh up in a lovely red dress that she brought over from Ireland.

Sadbh looked gorgeous.

Her hair has started to grow and you can notice changes every day.

Sadbh is slowly getting used to her Jack-in-the-Box toys and it’s turning into a game of dare. She acts all scared and wants to hide, however, she loves it when we continue to turn the handle and acts all surprised when the rabbit or sock-monkey pops out of the box.

Her evening was spent playing with everyone, and she was in a fantastic mood.

When Katie pulled up outside, Sadbh got very excited and was grinning from ear to ear.

The fun continued throughout the evening and Sadbh had a blast.

We have not been testing the Passy Muir Valve as much as we would like, and it seems that lately when we do, she does not tolerate it so well.

This either means that she has a slight cold, or the Botox has not worked quite as well as we had hoped. I suppose we will soon find out when we meet with Dr. Inglis on May 8^th.

New photos.

Photos from April 19 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – April 18th, 2012

Sadbh slept soundly until 2ish, and then it was time an early morning snack.

Thankfully she went back to sleep in her cot until 5:45 when she woke up for another quick snack, and then back to sleep for another hour or so.

Later in the morning before she had changed out of her pajamas, she had a big coughing fit and ended up puking all over self and into her trach.

Katie was very quick to react and suctioned out Sadbh’s trach before it became an issue.

Immediately, Sadbh felt better and it was time to start the day.

It was time for a clean up, a change of her clothes, and breakfast. As you could imagine, she had quite the appetite and had a big breakfast.

Ali-Baba stopped by to play with Sadbh, and after some serious playtime, it was time for trach care and a quick nap.

In the afternoon, Sadbh took Granddad, Nana and Nini on a long walk up to Madrona and around the neighborhood.

For dinner, we decided to head out to Presse, and Sadbh had a blast. She spotted a toddler sitting at the next table and she was making all sorts of baby signs to him. He looked quite confused, however Sadbh was in her element and seemed to be having a great conversation.

On our way home, she was smiling and waving at everyone she passed, she is such a flirt.

As soon as she got in the car, she got very cranky and wanted out. She was tired as it was coming up on her bedtime.

New photos.

Photos from April 18 2011.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – April 17th, 2012

Katie woke up a number of times throughout the night to Sadbh standing up in her cot looking for attention.

Each time, Sadbh ended up with a quick snack and her trach suctioned, and then it was back to sleep for another hour or so.

It’s fortunate for Sadbh that Katie is such a light sleeper.

Sadbh had a great day with her Grandparents and Nini, and even got to head up to Trader Joe’s to get some groceries.

Just before they headed off out for their walk, they received a visit from the nursing agency supervisor to recertify Sadbh. During this visit, the nurse used Sadbh’s ear thermometer to take her temperature, but was completely lost as how to use it. It was a great source of entertainment for all in the house as they watched the nurse pass the thermometer across Sadbh’s forehead.

The day flew by, and later in the evening Sadbh got to practice using her Passy Muir Valve. She did not tolerate it for more than a minute, and she ended up getting sick.

She had a runny nose this evening, so we think she’s fighting a cold and this could be hindering her ability to tolerate the PMV.

Bedtime could not come soon enough for Sadbh tonight, and once her little head touched her cot, she was out cold.

New photos.

Photos from April 17 2011.

Take care,

Wayne, Katie and Sadbh.