Sadbh's update - day 142

Twenty weeks and two days old today. It's quite insane to think of what's happened in such a short amount of time.

Katie called Dr. Inglis's office today to fill a prescription, and to let him know that we are starting to hear air leaks more frequently. After playing a little phone tag, Katie and Dr. Inglis finally got to chat and discussed Sadbh's progress, apparently Dr. Inglis was pleased with the news. 

He still feels that Sadbh airway has to develop further and that he will be able to check for granuloma build up during our visit on the 19th. If there is granulation build up on the inside of her airway, he will be able to remove it during the same visit, and the hope is that after that heals, she might be able to be fitted with a new trach called the Passy Muir Trach.

The Passy Muir trach is an advanced trach that would allow Sadbh to swallow her secretions and it would also allow her to develop her speech.

Later in the morning, Ali-Baba dropped by to help out with trach care and they all went to lunch afterwards. 

Sadbh is always happy to see Ali-Baba and it's really great to see this bond grow stronger every visit.

New photos.

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 141

Late in the morning, Katie, Sadbh, Suzie and Cormac all attended a class for parents of 3 to 6 month old babies, to chat about issues and concerns, and to gain insight through other parents experiences.

Apparently there was approximately 25 babies present at this meeting and it ended up being a very surreal experience. 

At any given time, there was crying, cooing and all sorts of other baby noises and sounds, all sounds that are foreign to us since Sadbh is not capable of creating any real sound other than the sound of her secretions gurgling in her trach. 

We have experienced this in the past, but it's usually only with one or two babies, not a whole room full. 

At one point, Katie had to visit the restroom and Suzie, being the super Godmother that she is, was able to look after both Sadbh and Cormac.

Since day one, we have had nothing but issues every time we place an order for medical supplies. Despite having a detailed spreadsheet with all the item names, item numbers, quantities, etc, our supply company typically get's the order wrong.

In the early days, we would receive trach tubes or trach ties for adults, rather than a new born, or we would receive 22, one liter bottles of sterile water, rather than 5 bottles. 

Well, today's order took the biscuit. Part of our trach emergency kit contains a few small lubricant packets. This is to be used each month when we change out Sadbh's trach, and we always make sure that we have extra on hand incase of an emergency.

Since we are getting low, we placed and order for 10 individual packets, however, when our carton arrived, it contained 10 boxes, each one containing 144 individual packages. Obviously a simple mistake, but I hope whomever processed the order doesn't think we are trying to change the trach for an elephant.

New photos.

Photos from June 30th.

Sadbh's update - day 140

It was a very quiet morning for Sadbh.

For the first time in the last three weeks, I had to go to work, and since we are back to having day nurses, Sadbh did not get a chance to sleep in with mummy.

Later in the morning, Suzie and Cormac dropped by and brought both Sadbh and Katie out shopping. 

Just before 5pm, Katie texted me to let me know that Sadbh was getting very tired and was checking to see if I was going to be home soon. Since we still had to perform trach care, our window of opportunity was starting to close. 

Fortunately I was able to wrap things up and head home so we could take care of our princess. Once I got home, Sadbh was full of life and extremely excited. 

She was giggling hysterically, however it was in complete silence. Typically when she's giggling or crying, all you can hear is her breath passing through her trach, and the build up of secretions.

This continued for ten or fifteen minutes and both Katie and I were sure that we would never get trach care done.

Eventually, she wore herself out and we were able to give her a bath before she fell into a very deep sleep.

Trach care was very easy at that point and she ended up sleeping for another hour or so.

The rest of the evening was spent playing on her floor-mat with all her little animals and toys.

New photos.

Photos from June 29th.

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 139

Sadbh slept from 11:30 last night until 5:30 this morning. Once she had her belly filled, she went back to sleep until 9:30. It's easy to understand why we have all enjoyed a very relaxing week.

The rest of the day was spent playing and enjoying her new toys. While doing tummy time time this evening, she rolled onto her back a couple of times. Our next goal is for her to roll onto her belly from her back. 

We have noticed a lot of air leaks escaping past her trach and exiting through her nose and mouth. I'm hoping that this development is in line with what Dr. Inglis is expecting for our next visit  on the 19th of September.

New photos.

Photos from June 28th.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 138

It's been a very lazy and relaxing week, and Saturday was no exception. 

After a nice sleep in, Sadbh got to Skype with Granddad and Nana in Ireland for a while. It seemed that she recognized their voices from their recent visit.

Afterwards, we all headed to Green Lake for a nice long stroll in the sunshine. 

By now, Sadbh should have been fast asleep, however I think the excitement was too much for her so she did not fall asleep, until we were almost done with our walk. 

Since she was now fast asleep, we decided to keep on walking so she could get the rest that she needed.

After Green Lake, we picked up some sushi and headed over to Suzie and Derek's for dinner.

Sadbh got to spend some time hanging out with Cormac and Clodagh, as well as her Godparents.

Not a bad way to end a great day.

New photos.

Photos from July 27th.

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 137

Nothing beats sleeping in and hanging out with Sadbh all day long. I'm certainly going to miss all this when I return to work next week. 

The morning was spent napping, playing on her floormat farm, some tummy time and hanging out in the back yard. We even got to Skype with my sister and her family in New Zealand. They just arrived home from their trip with us, despite having left Seattle on Monday. One of their flights was cancelled for two days, allowing them to spend time in Brisbane for a stop of sightseeing and fun.

Later in the afternoon, we took a walk to the local farmers market that is open every Friday, and despite being very tired, Sadbh did not want to miss out on any of the action. 

It was a perfect afternoon for a stroll through the market and we were able to get everything we needed for dinner.

By the time we got home, Sadbh was fast asleep, so we left her in her stroller in the back yard in plain sight, rather than disturbing her.

We realized that we needed some additional produce from the market, so I set off on my bicycle and Katie watched over Sadbh.

At one point, Sadbh opened her eyes wide with a scared look on her face, and her blood oxygen level dropped below 90. Katie quickly moved her inside and started to suction her. 

For some reason or other, when she tried to insert the suction catheter into Sadbh's trach, it appeared to be blocked. She had to push it in with force and then was able to suction Sadbh's airway.

Everything ended up working out ok, however it goes to show that you cannot leave your guard down whatsoever. 

Thankfully, Katie's quick reaction prevented any serious respiratory distress issues for our little girl.

As we were making dinner, UPS delivered a few new items for our little princess. We received a high chair and an activity center that includes a bouncy chair. It was fun to see Sadbh in the bouncy chair, although I think she needs to grow another two or three inches be

fore she can actually touch the ground.

I cannot believe how much room is taken up by all these items, and how our past interests have been firmly replaced by toys, educational items, medical equipment and baby furniture. 

Areas in the back yard that were used for beer coolers when we had BBQ's, are now designated parking spots for strollers. Going out to some of our favorite restaurants has been placed on hold, since they are too loud for us to hear Sadbh's airway.

Getting up periodically throughout the night when we do not have nurses, to make sure that  Sadbh's mist collar is on correctly.

We still have storage space for the beer and wine when we have BBQ's, but it's funny how the priorities has shifted, and it's all for the best, and I wouldn't change it for the world.

New photos.

Photos from June 26th.

Thanks and have a great weekend.

Wayne, Katie and Sadbh.

Sadbh's update - day 136

Thursday was another relaxing day, and after a little sleep in, we walked up to the Hi Spot Cafe in Madrona for breakfast.

We are so lucky that Sadbh is so easy going when we go out to eat, although we have learned that we should only really go to quiet restaurants, especially since we have to be able to hear if she needs a suction or not.

After breakfast, we headed home for some lounging in the sun in the back yard, and Sadbh got in some nude sunbathing in her pack and play. 

She's had an irritating diaper rash for the past few weeks, so we figured some time without a diaper on might help sort things out. 

As we were relaxing in the yard, Katie reminded me of when my mom was minding Sadbh last week and had Sadbh's diaper off so her bum could heal in the warm air. 

After a while, my mom brought Sadbh into the house so she could be suctioned, and with that, Sadbh decided that he wanted to have a nice long pee right there in my mom's hand. 

I suppose it could have been much worse, she could have been a boy and who know's where the pee would have ended up.

Since we had to cancel Sadbh's recent Cranial Osteopathy appointment with Dr. Cavanaugh on the 17th due to her high temperature, we received a last minute opening today, just after we finished trach care. 

This timing worked out perfectly and we headed off to meet Dr. Cavanaugh.

By the time we arrived, Sadbh was ready for a nap and the Dr. was able to make all the necessary adjustments to Sadbh's neck, shoulders and back.

He was pleased with her progress since the last visit and pointed out that we will need to change Sadbh's sleeping position from the left to the right for a while, and then rotate her on an ongoing basis. 

He also showed us a few techniques to help stretch out her neck and the back of her head.

The rest of the day was very peaceful and relaxing, in fact, after some play time, Sadbh slept from 7pm until 3am.

New photos.

Photos from June 25th.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 135

For the first time in ages, we did not have any pressing tasks to take care of today. So we decided to sleep in and after we eventually got up, the three of us headed off to Green Lake for a picnic in the sun. 

Just as were pulling up to get lunch, Suzie called to see what we were up to and since she wasn't too far away, she decided to join us for some relaxation in the sun. 

Sadbh had her first experience in public nudity, however it was as a result of a nice big diaper blowout that leaked through her clothes. Just as well that Cormac had already left, as I didn't want to have the wee man checking Sadbh out in her natural glory. 

Sadbh had a few quick naps throughout the day, but spent a lot of time awake and playing on her floor matt, either having tummy time, or playing with some of her farm animals. Typically during the day, she will eat every three hours or so. After feeding her at 6pm, I put her down for a nap at 7, and was very surprised that she did not wake up until almost midnight. She must have been famished as she quickly drank two bottles of milk before heading back to sleep.

She does have a ferocious appetite, but I haven't seen her drink two bottles like that before.

New photos.

Photos from June 24th.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 134

Typically, it's either Katie, myself or a close family member who feeds Sadbh. This is so we can maintain a very strong bond with our little girl, considering all the nursing attention that she receives during the day and night, and this was highly recommended by our occupational/physical therapist, Robin.

Since we were both exhausted, our nurse offered to feed Sadbh throughout the night to allow us to rest up. 

Apparently, Sadbh slept until 2am before needing to be fed, and afterwards she was in the mood for some playtime. In an effort not to break Sadbh's current nighttime sleeping and feeding schedule, the nurse tried her hardest to get Sadbh back to sleep. Each effort was met with a flirtatious smile and another invitation to play. Eventually, Sadbh gave in and fell asleep. 

She is such a diva, we are going to have our hands full with this little girl!

  

Tuesday was a very relaxing and calm day for Sadbh. 

For the first time in a few weeks, it was very quiet around the house, and I think Sadbh took advantage of this and chilled out for whole day. 

After a nice walk around Sewart Park, we headed to Flying Squirrel Pizza for dinner. The temperature was just right so we decided to sit outside. Typically by the time we sit down for dinner, Sadbh is fast asleep. Tonight she was wide awake, happy and very alert. Eventually we had to suction her trach, change out her artificial nose and move her oximiter sensor from one foot to the other. Everything went well and we were able to enjoy dinner with Sadbh sitting comfortable on my knee. 

When we got up to leave, another customer came up to us and mentioned that he and his wife had a daughter who was born premature and as a result needed a tracheostomy until she was three years of age. He explained that he had observed how we managed Sadbh and was impressed how we handled everything and reassured us that everything will work out.

It was a very humbling moment and despite feeling tears welling up in our eyes, we sincerely appreciated this mans words of praise and encouragement. 

New photos.

Photos from June 23rd.

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 133

It was a sad day around the house on Monday, due to my families departure home.

My mother was a great help by feeding Sadbh throughout the night, and got to spend a lot of time with both of her youngest grandkids. 

Last week, my brother and his wife Ann visited San Francisco for a few days and brought cute Alcatraz Island prison clothes for the kids. Before everyone left today, we had to take a group photo of the three of then in their prison outfits, and I have to say, all three looked adorable.

Farewells are always hard, especially since we all live so far away from each other, and it will be quite some time before we are all together again. 

Trish, Dan and the two boys have a grueling 30 hour journey before they arrive back in New Zealand, while the rest of my family have a 13 hour journey to Ireland.

For the first time in a few weeks, the house seems very empty, and I'm sure this will be a bit of an adjustment for Sadbh since she was on the receiving end of so much love and attention.

I often reflect on the past few months and on how difficult this journey has been for the three of us, and I am so grateful that I am surrounded by such amazing family members, both on Katie's side, and my side. We are all spread around the world, however the love, support and care that everyone has sent our way has given us the strength to deal with this, and to keep our spirits positive.

In the grand scheme of things, we are the luckiest people around.

To our immediate and extended families, thank you so much and we love you all!

New photos.

Photos from June 22nd.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 132

Sunday was another fun filled day for Sadbh and family.

Since it was my families last day in town, we decided to head over to Ballard for breakfast and a nice stroll through the farmers market.

It was such a beautiful day and the market was packed full of great produce and local goods.

After the market, we ventured over to the Ballard Locks to check out the shipping locks and salmon ladder. This is always a very spectacular place, and since it was a Sunday, it was full of big pleasure boats, heading back in to port from a weekend of fun out on the sound. 

It was a very busy day, and by the time we got home, Sadbh was in a deep sleep. This put our trach care schedule off by a few hours, and unfortunately, by the time she was ready for trach care, she was extremely fussy and it took us almost two hours to get her settled down.

It was very stressful for the three of us, and as soon as we thought we were making progress, Sadbh would wake up and get very tense, preventing us from securing her trach ties properly. 

Eventually everything worked out and we were able to put her to bed so she could have a proper sleep without us bothering her.

New photos.

Photos from June 21st.

Take care,

Wayne, Katie and Sadbh. 

Sadbh's update - day 131

Saturday was a great day for Sadbh. She is always happy and full of smiles when she wakes up in the morning. 

The nights without nurse care can be great, but also very exhausting. We love sharing our room with Sadbh, and having her so close to us. However we have to be continuously on our guard making sure her trach collar is in the correct position and that she is getting suctioned when needed. 

That said, we love it and more importantly, we love waking up to our beautiful little girl and bringing her into our bed for cuddles and playtime.

It was that time in the month to change out Sadbh's trach. This is definitely getting easier, however it is still very exhausting both emotionally and physically, and I can say that my nerves are spent by the time we are done.  

Princess Angry Bird did appear for a while around bed time this evening, and it took a lot of patience and energy for both daddy and mommy to get her calmed down and ready for bed. 

She finally fell into a deep sleep for a couple of hours, and when it was time to move her and all her equipment up to our room, she got to spend some time hanging out with her uncles and aunts.

New photos.

Photos from June 20th.

Cheers,

Wayne, Katie and Sadbh.

Sadbh's update - day 130

Friday meant a trip to the Woodland Park Zoo for Sadbh and family.

Sadbh was awake for most of the trip, although I don't think she really got to see much from her stroller. That said, I'm sure the sounds of the exotic birds and orangutans must have been very exiting for her.

The highlight of the day was bumping into Sadbh's NICU nurse Susan from Children's. Susan was Sadbh's primary caregiver while she was in the NICU and she was a huge advocate for Sadbh from the minute she was admitted.

Today was the first time we have tried using the front pack baby carrier. We have been nervous to use this since it could potentially obstruct her trach. It went quite well and Sadbh seemed to be very comfortable. I had to check on her constantly and to make sure she was sitting slightly sideways, rather than full on against my chest.

The rest of the day was spent relaxing with family and hanging out with her cousin Josh.

New photos.

Photos from June 19th.

Have a fantastic weekend.

Wayne, Katie and Sadbh.

Sadbh's update - day 129

Thursday was a very relaxing day for Sadbh.

She got to spend some time with Kati and Sev, before they departed on their trip to Barbados, via Las Vegas.

In the early afternoon, she had her monthly appointment with Dr. Heron, her homeopathic physician. She was pleased with her progress and after her evaluation, Dr. Heron wants us to keep Sadbh on the Plumbum Metallicum prescription. 

The rest of the day was spent playing with cousin Josh and her grandparents.

From 5pm to 9pm, Sadbh had a very long, deep sleep. Her heart rate was in between 105 and 119, and often dipped below 100. 

When she finally woke up, she had a ferocious appetite and a lot of gas. It was quite the challenge as she would get extremely fussy every few gulps of food. 

Eventually, after a few burps and a couple of farts, she was as right as rain and full of smiles again.

Imagine if that was the solution to all of life's problems.

New photos.

Photos from June 18th.

Take care,

Wayne, Katie and Sadbh.