Sadbh’s update – day 171

Yet another great nights sleep for our little princess. She slept from 8:30pm until 5:30am without waking up once. Not too shabby, to say the least.

This morning Sadbh had a follow up appointment with her genetics doctor at Children’s and we are proud to say that she passed each of the tests with flying colors.

The doctor was very impressed with her development as a baby and confirmed that she was approximately three months ahead of the standard rate for a baby.

They also mentioned that physically she is perfect in every way.

Not to be cocky, but we already figured as much.

That said, it was great to receive such fantastic news and it gives us the confidence that eventually everything is going to work out perfectly.

The rest of the day was spent hanging out at home and in the garden since the weather was so nice.

On a sad note, Sadbh had to say goodbye to her favorite nurse today.

We are very sad to see Audrey go, but we are so very fortunate that we were able to get to know her and that Sadbh was under her excellent care for the past few months.

We would like to thank Audrey and wish her the best of luck on her future endeavors.

New photos.

Photos from July 29.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 170

The decision to forego nurses last night worked out well. Sadbh had yet another great nights sleep and slept straight through until 5:30 this morning.

As usual, she fell back to sleep after her breakfast and slept until 8:30, when Audrey arrived.

The rest of the morning was spent hanging out and playing with Granddad and Audrey and eventually Ali-Baba came by to join in on the fun and also help with trach care.

I came home to the funniest sight ever. Sadbh was bouncing like crazy in her Jumparoo and didn’t seem to want to stop.

I’ve never seen so much excitement before, and she was smiling from ear to ear.

A while later she started to wind down and you could tell she was getting tired.

With that, I swaddled her up nice and comfy and placed her in her cot where she feel into a deep sleep.

About an hour later, mummy arrived home, and Sadbh was awake and very hungry. I suppose you can’t beat the feeling of being in hot demand as soon as you set foot inside the door.

Sadbh was awake for at least another 3 hours, and had a lot more fun in her Jumparoo as well as other toys. One of her new toys is Granddad, and it seems she has a lot of fun with him.

Sadbh received a very special gift from our friend Helen in England.

This wonderful gift was a book named Sadbh’s Magical Meanderings, and it was about a little girl learned to see magic in everything in the world.

Thank you so much Helen, Sadbh is going to love this book!!

New photos.

Photos from July 28.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 169

Sadbh had another nice long sleep last night and did not wake up until after 4am. A quick feed, burp and a diaper change later, and she was back to sleep for another few hours.

Once Sadbh was awake, it was time for fun with my father.

He came over to help since our regular nurse is leaving at the end of the week.

Most of the nurses that we have only watch out for Sadbh’s health welfare, and are not necessarily good at helping with Sadbh’s development as a baby.

As I had mentioned in one of my earlier blogs, one of our nurses is more concerned about filling out the medical documents, than attending to our crying baby.

As a result, the plan is for my father to help out with Sadbh’s development, as well as learning how to take care of Sadbh from a health point of view.

Throughout the day, our nurse provided training on Sadbh’s medical equipment, and how to care for her with suctioning and so forth.

Both Sadbh and Granddad also got to have a lot of fun, and even went for a nice long walk through the neighborhood.

When I returned home from work, Sadbh, Granddad and the nurse were all out in the back yard enjoying the nice evening.

Sadbh was having a great time and it was quite obvious that she was really enjoying Granddad’s company.

Later in the evening, when Sadbh started to get tired, both my dad and I started the trach care routine. It didn’t take long to get her to sleep after her bath, and it started off very easy since she was in a deep sleep.

Just as I was securing her trach ties, she woke up and became very irate.

Eventually the job got done, but not before causing a lot of stress.

Earlier in the evening after requesting our nursing schedule for the week, Katie learned that we were scheduled to have a new nurse tonight and with that, she would be accompanied by one of our regular nurses for a couple of hours onboarding.

Now, this would not be an issue if it were during the day shift, as Sadbh is awake for part of that timeframe. The issue with this schedule was that is starts at 10pm and Sadbh would be fast asleep for a couple of hours by then.

Two nurses going over the ropes for a couple of hours would surely disturb Sadbh, and more than likely the rest of the house.

To make matters worse, the nurse that was scheduled to provide the training is our noisy, clumsy nurse.

The end result is that we will not have nurses working tonight, but the hope is that we will get a much better nights sleep than if we had to deal with the alternative situation.

We also learned that our nursing agency has not been able to find a replacement for the nurse that we are losing this week and as a result, our nursing coverage next week onwards is in doubt.

It never ceases to amaze me on how incompetent this nursing agency is, and it’s extremely frustrating that my insurance company does not allow us to use any other agency.

Since we were able to bring Sadbh home from Children’s Hospital, I have to admit that the most difficult thing that we have had to deal with is the nursing agency and their inability to provide consistent quality nursing care.

The few good nurses that we did encounter were a result of pure luck, and unfortunately they moved on to other agencies.

New photos.

Photos from July 27^th

Wayne, Katie and Sadbh.

Sadbh’s update – day 168

Sadbh was fast asleep by 8pm on Sunday night, and slept all the way through to 5am on Monday morning giving Katie a well deserved rest.

I took over from the night nurse at 6am, and Sadbh slept right through until 8:30. After she was fed, we had a great time playing around the house.

Ali-Baba came over just after 10am and spent time playing with Sadbh.

By now, Sadbh was getting very tired so we started our trach care routine. She was in a very deep sleep within minutes and trach care was very easy.

She slept for another 45 minutes and once she was awake, it was lunchtime.

After she had eaten, I changed her diaper, dressed her up and headed up to Capitol Hill for an appointment.

Since we cannot drive without someone sitting next to Sadbh in the car, I had to walk her in the stroller despite the bad weather. Fortunately her stroller comes with a great rain cover, so she was as snug as a bug.

Sadbh was in such great form, and seemed to enjoy our quick outing.

After we got home, she fell into a nice deep sleep in my arms on the couch.

It was a great way to spend the afternoon, a little bit of playtime with a nice cozy nap.

As soon as Katie got home from work we all bundled into the car and headed to the airport to pick my father who’s come over for three months to help out with Sadbh during the daytime.

Sadbh was full of smiles when Granddad arrived and Granddad was over the moon to see Sadbh. He has noticed some big changes since he was here last month.

Just before Sadbh’s bedtime, we Skyped with my sister in New Zealand for a while and once we were done, Sadbh was asleep within minutes.

Fingers crossed that she will sleep through the night.

New photos.

Photos from July 26^th.

Take care,

Wayne, Katie and Sadbh.

Sadbh’s update – day 167

Apart from having to suction Sadbh a few times throughout the night, we all got a good nights rest.

Sadbh did great and did not wake up until 4:30am for her first feed of the day.

The weather had changed for the worst and this gave us a great excuse to sleep in for another few hours.

Once we finally woke up, it was time to Skype with my parents back home. As luck would have it, my brother along with my cousins and their wives happened to be visiting my parents at the same time.

It was great to see everyone and you could tell that Sadbh was having fun as she was smiling like crazy at the webcam on the laptop.

After we got done with my parents, Sadbh got to Skype with my aunt and uncle Joan and John in Roscommon.

Later in the morning the weather started to improve, so we headed out to run a few errands and also to pay a visit to Peggy (Ali-Baba) and Kirk.

This was a fun visit as Ali-Baba performed her water aerobics routine, much to the delight of Sadbh, and everyone else for that matter.

I typically don’t get to see Sadbh and Ali-Baba playing too often, as I’m usually at work while they spend time together, but it was such a treat, and it was so very obvious how much love there is between the two of them.

We had a few more quick errands to run before heading home, and Sadbh was fast asleep by the time we got back. As it was getting late, we figured that we would forgo our usual trach care routine and get the job done as soon as possible.

Sadbh must have heard our plan and decided that she wanted to play instead.

By the time she was ready for trach care, she was exhausted from all the playtime, especially with her Jumparoo.

As soon as Sadbh was ready to go, Katie and I got down to work and trach care was quite easy since she was in such a deep sleep.

Unfortunately she eventually woke up before we were finished so we had to deal with a squirming fussy baby for the rest of care.

As soon as we were done, she dropped back to sleep and remained that way for the rest of the night.

A perfect ending to a perfect day.

New photos.

Photos from July 25^th.

Thanks,

Wayne, Katie and Sadbh.

Sadbh’s update – day 166

I love Saturday’s. It’s my favorite day of the week as it’s the first day in a long time that I get to wake up with my little girl, and after she’s fed, we get some playtime, and a chance to sleep in.

Today was no exception and Sadbh was in great spirits when she woke up.

We all had a great morning hanging out and Sadbh even got to go on a nice long walk up to Capitol Hill with her friend Cormac.

Since it was such a beautiful day, Sadbh got to out on her first boat trip on Lake Washington, with Cormac and Aidan.

Despite having lifejackets and all the right equipment, we were still quite nervous, however everything went great and Sadbh seemed to be really enjoying herself.

We ended up spending a couple of hours on the lake and Sadbh even got a chance to drive the boat.

We were sure that she would be fairly exhausted after all the fun activities by the time we got home, but she was still full of beans. It took another hour or so of playing before she started to tire out.

Once she was out, we got her all bundled up and started on trach care. It was very straightforward since she was in such a deep sleep, and once we were done, we put her to bed upstairs in our room.

Within ten minutes, she was awake and back downstairs playing with her toys again.

Our friends were throwing a birthday party downtown at the Nitelite to celebrate Lydia’s birthday, and since both Katie and I wanted to attend, we had to take it in shifts.

I took the early shift and headed to the party from 8 to 9, and Katie went out after I got home.

Sadbh was fast asleep when I got home, so I figured it would be best for me to hang out upstairs with her and catch up on some movies.

She slept until 11:30, and work up just in time for Saturday Night Live.

After a nice big feed, she did not seem like she was ready to go back to sleep, so we played for a while and then watched the telly.

She was hilarious. She would focus on the TV for a few moments, and then turn to me and give a huge smile and laugh. Then she would be glued to the TV again for another few moments.

Eventually it was time to get swaddled and put back to bed, and fortunately she was out like a light.

New photos.

Photos from July 24^th.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – day 165

Since Katie had Friday off, we decided that it would be best not to have the clumsy nurse on duty Thursday night, especially if we wanted to get a good nights sleep.

Sadbh was great throughout the night despite waking up a couple of times to be suctioned or fed.

Sortly after Sadbh’s morning breakfast, she freaked poor Katie out by having a huge projectile vomit. Everything was fine, and it was just normal baby stuff, but it did worry Katie for a moment.

Ali-Baba came over early in the morning to help Katie out with Trach care.

Since trach care was accomplished early in the day, this opened the rest of the day up for Katie and Sadbh to have fun and do whatever.

Trach care is an important daily task and can cause a lot of stress. The earlier in the day we can accomplish it, the better.

Typically I bring my lunch with me to work and have it at my desk, today I figured my lunch break would be better spent in the company of Katie and Sadbh.

We arranged to meet at Café Presse and got to spend an hour or so hanging out.

Sadbh was so full of smiles, it was very difficult to leave and go back to work.

That said, it’s always great knowing who’s waiting for me at home at the end of the day.

Throughout the afternoon, Katie sent me photos and even a few videos of Sadbh in her Jumparoo. Like I had mentioned in an earlier post, she has really taken to this toy, and is now bouncing by herself, and really enjoying it.

Today, she enjoyed it so much that she actually fell asleep in it. Totally amazing.

After work, we headed over to meet with her Godparents and her friends Clodagh and Cormac for dinner.

Again, Sadbh was in a great mood and since we would not go to sleep, she got to spend much of the evening hanging out with the adults.

We really have to start working on teaching her manners. Midway into our dinner, she started on a five minute farting session, right there at the dinner table. Cheeky monkey. That said, it was very amusing and gave us all a good laugh.

It was a perfect ending to a perfect day.

New photos.

Photos from July 23^rd.

Have a great weekend,

Wayne, Katie and Sadbh. 

Sadbh's update - day 164

Sadbh was awake at midnight for a feed, and since Katie was so tired, I took care of business.

Little did I know, it was Princess Angry Bird who was awake, and it took forever to get her calmed down and back to sleep after her bottle.

The clumsy noisy nurse was working last night, so none of us got a good nights sleep.

Every so often we could hear her walking around downstairs and just before my alarm went off, there was a huge clatter in Sadbh’s room

Evidentially, the nurse was cleaning out the scuction canister in the bathroom and it’s fairly obvious at this stage that in order to clean out this piece of equipment, you have to drop it on the ground first, before attaching it to the rest of the equipment.

It has to be said, we would be so much better off not having a night nurse when this particular nurse works, as we get no rest whatsoever.

Sadbh had a great day hanging out with Audrey, our day nurse.

When Ali-Baba arrived, both she and Audrey took care of Sadbh’s trach care. This is the first time that a nurse has managed this for us and it goes to show how much trust we have in her.

It’s really too bad that she is moving to San Diego.

Sadbh was asleep when I got home, and I figured that I would take advantage of this to get a few things done around the house before Katie got home. Specifically, her birthday card and gift.

Sadbh wasn’t having any of it and was awake and demanding attention in no time.

She appeared to be hungry, however a bottle did not seem to satisfy her.

After quite some time trying to keep her calm, I bundled her up and she fell asleep in my arms as I rocked her back and forth.

She slept for another hour or so and after she woke up, we all headed out for Sushi to celebrate Katie’s birthday.

Sadbh is such a flirt. All the servers at the restaurant kept coming over to check her out, and she gave them all a huge smile each time.

I know I’m going to have my work cut out for me when she’s older.

We are going to wait another few days before trying out the Passy Muir trach valve as we have not noticed much leakage in her airway since Monday. We believe there might be some swelling due to the healing of her granuloma removal, so it will be best to wait another few days before trying the valve out.

New photos.

Photos from July 22^nd.

All the best, and HAPPY BIRTHDAY Katie!!

Wayne, Katie and Sadbh.

Sadbh's update - day 163

Sadbh’s schedule has been off since Monday, and she was up twice during the night for a feed and diaper change.

She had a good day with Audrey and they even got to go for a nice walk up to Madrona since the weather was so nice.

She was fast asleep when I got home, so I was able to get a few things organized before she woke up.

Once she did, all bets were off.

Princess Angry Bird must have been starving. She was so cranky, despite the fact that her food was on the way.

One bottle wasn’t enough, I had to heat a second and she nearly ate the arm off me while we waited for it to heat up.

She was quite fussy over the next few hours, and it took a lot of patience to keep her entertained.

Later in the evening after she calmed down, we got to spend a lot of time playing with her toys.

She has really taken to her Jumparoo. She typically does not bounce much, and when she has, it’s usually because she gets cranky. She would arch her back and start to bounce while crying.

Today I noticed that she was bouncing on her own and she was actually enjoying it.

Trach care was quite late this evening and by the time we were done, everyone in the house was exhausted.

New photos.

Photos from July 21^st.

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 162

Sadbh had a good nights rest after a very hectic day.

Tuesday morning was spent hanging out with mommy.

Our nurse Audrey arrived at 8:30am to look after Sadbh for the day. She is a great nurse and is fantastic with Sadbh.

Unfortunately she is leaving for an assignment at the end of the month, she will be greatly missed.

Later in the day, Ali-Baba stopped by to spend time with Sadbh and since the weather was nice, all three ladies went for a walk around the neighborhood.

Sadbh woke up just as I arrived home from work and I was greeted with a huge smile.

According to Audrey, she had moments of fussiness throughout the day and this was attributed to her surgery yesterday.

Despite this, she is a very happy baby and most of the day was fun for all.

When Katie got home from work, we set about getting ready for trach care.

Sadbh had been awake for quite a while at this stage and it didn’t take long to get her to sleep.

Unfortunately, as soon as the trach ties came off, she woke up and spent the rest of the time wiggling and making care difficult to manage.

Regardless, we persevered and got the job done.

We have learned that when she wakes up during care, we have to remain as calm as possible and to keep focused on finishing the job.

After trach care, we moved her into her cot where she finally fell into a deep sleep and it time for Katie and I to relax and have dinner.

New photos.

Photos from July 20^th.

Have a good night,

Wayne, Katie and Sadbh.

Sadbh's update - day 161 part 2

Katie was up at 1:30am this morning to feed Sadbh ahead of the 2am cut off. Everything went well and Sadbh was back in a deep sleep before 2.

Our plan was to leave the house around 6:15am, which should get us to Children’s in time for check in.

By 5:45am, Sadbh was wide awake, hungry and extremely upset.

We have both dealt with Princess Angry Bird on many an occasion, however this morning since we could not give Sadbh what she wanted, it was a heart breaking ordeal.

Once in the car, she calmed down somewhat, but every so often she would get upset and work herself into a frenzy.

By the time we reached the hospital, she was well worn out, and was very tired.

We quickly checked in and in an effort to keep Sadbh calm, I kept walking her around the waiting area to keep her distracted with all the great art and the huge stain glass whale hanging from the ceiling.

This worked a treat until she would turn her focus to me and then start bawling crying.

We were first on the list for surgery this morning and the admitting nurse quickly processed Sadbh and got the ball rolling with the anesthesiology team.

Sadbh had to be weighed and measured as part of her check in, and despite arriving at the hospital in the form of Princess Angry Bird, when all the nurses in the surgery prep station commented on how cute she was, she turned to them and gave a huge flirtatious smile. And when done flirting, Princess Angry Bird returned.

Sadbh weighed in at 14lbs and measured 24 inches. On August 8^th, she weighted 12lbs 6 ounces and measured 23 and ¾ inches.

The nurse provided us with a hospital gown for Sadbh and I have to say, it is the cutest thing I have ever seen.

Doctor Inglis popped in to see how Sadbh was doing and briefly went over what his objective was and what we should expect.

Soon afterwards we met with the anesthesiology team to go over their procedure and what to expect, moments later we kissed her good bye and off she went.

With that, Katie and I headed off to grab a coffee and wait to get paged from the doctor.

The entire procedure was estimated to last approximately 45 minutes, but just after we spotted Waldo (or Wally as he his know back in Ireland) in the construction site, the pager went off and we quickly made our way back to the post op conference room assigned to us.

Dr. Inglis was encouraged by what he saw.

He could tell that Sadbh’s vocal cords have strong closing capabilities and this would be promising for her voice and speech development.

Since she was under anesthetic, he could not get a sense of how her vocal cords performed when trying to open, so we will have to wait for our next appointment to see how well they are developing.

As expected, Sadbh did have some granuloma inside her airway, just above the trach. With that, Dr. Inglis was able to remove this scar tissue with the use of laser and our next steps are to start using the Passy Muir trach valve by the end of the week.

He did present us with a number of options with todays results.

The first option was to continue as we are until her vocal cords either fix themselves or when she is older and can go through some corrective surgery without compromising her voice.

The next option would be to make an incision in her neck, into the airway, just below the vocal cords, then he would pass a suture into her airway, suction it up through her mouth. He would then make another incision directly above her vocal cords and pull the suture back out pulling the vocal cords up against the side of her airway.

This is common in older children and adults, but not in infants. There is also a chance that this could affect her voice and speech development.

The third option would be to slice the vocal cords allowing them to open without much difficulty.

There is a chance that this would also affect her voice.

The fourth option would be to insert a type of splint that would force the vocal cords open.

There is a risk that as she grows, the splint might become dislodged and need to be replaced.

His recommendation, and our preferred option is the first one. To keep on the course that we are currently on and hope that the vocal cords correct themselves.

After meeting with Dr. Inglis, we made our way to the post op waiting room to meet our baby, and it wasn’t long before she arrived all groggy and confused.

Since she is under 6 months old, we had to hang out for 4 hours afterwards so they could monitor her recovery and to make sure she did not have any complications.

Katie quickly fed Sadbh and despite still feeling the effects of the anesthetic, she had a ferocious appetite and did not waste any time.

Once fed, she fell into a drugged slumber and was very peaceful for the next hour or so.

Her post op recovery went great and shortly before 3pm we were discharged and on our way home.

Around 5pm, we got to interview another potential nurse that we hope can start back filling some of the night shifts. She has a daughter that is only 2 days younger than Sadbh, so we are confident that she should be dialed into Sadbh’s development needs.

Sadbh was in great form for the rest of the evening, it seems that she is healing well and is over the trauma of the mornings events.

She is such a tough little girl, I am so impressed with her strength, apart from when she is hungry.

New photos.

Photos from July 19th.

Take care,

Wayne, Katie and Princess Sadbh.

Sadbh's update - day 161 part 1

Just a quick update to let everyone know that today's ENT visit went well.
Her vocal cords did not show any significant signs of improvement, however there was granuloma build up above her trach within her airway, and they removed the build up with laser surgery.
She will continue to need her trach to breath, but we will be testing the Passy Muir valve in the coming weeks to see how this helps with her speech development.
She's very groggy and is now sleeping off her exciting morning.

I will send out a more comprehensive update along with photos this evening.

Thanks for all the positive thoughts, well wishes and prayers.

Wayne, Katie and Princess sleepy head Sadbh.

Sadbh's update - day 160

Sunday was another relaxing day for Sadbh.

Since Monday is going to be a big day, we figured it would be best for her to relax as much as possible.

We had a lot of fun playing all day and hanging out indoors, since the weather wasn’t so great.

Later in the day, we set out to meet a few friends for some pizza.

Typically when we put Sadbh in her car seat, she get’s really fussy. That is until we place her outside on the back porch in full view of the trees and garden.

This seems to have a very calming affect on Sadbh and it looks like she loves the swaying of the branches and the green leaves as they flutter in the wind.

Today was no exception, and as soon as we placed her outside, she was smiling from ear to ear.

When we arrived at the restaurant to meet with our friends Dee, Brain, Aidan and Marie, we also ended up bumping into another friend Luis. Small world.

Sadbh was fast asleep when we arrived, but the restaurant was quite noisy so it wasn’t long before she was wide awake.

That said, it was a good thing as everyone got to spend time holding and doting over our little princess.

She gets so much attention these days, I really hope it doesn’t go to her head.

Tomorrow is going to be a very big day for Sadbh.

At 6:45am, we are scheduled to check into Children’s Hospital for her appointment, and at 8am she is scheduled to be admitted into the Operating Room with her ENT doctor. Dr Inglis will then carry out a bronchoscope in her airway to see how her vocal cords are doing, and also to see if she has any granuloma build up around her trach.

Since Sadbh is growing as a baby, her airway should also be growing, and since her trach remains the same size, there should be some air moving up past the trach and out through her nose and mouth. This is known as a leak.

The last vist we had with Dr. Inglis, he did not notice a leak in her airway, and was concerned that there was a potential for a granuloma build up.

Granuloma is quite common and it’s basically scar tissue build up around the trach on the inside of the airway. This is due to the body fighting a foreign object within.

If there is a build up, Dr. Inglis will remove it tomorrow and we will then schedule a follow up appointment for a later date.

If her airway is clear of any granuloma, then we would discuss fitting Sadbh with a Passy Muir trach which contains a valve system that allows air to flow in, but then pushes the exhaled air out through the nose and mouth.

This would allow Sadbh to manage her own secretions without the need for constant suctioning, and it would also allow her to develop her speech.

Since Sadbh has to go under general anesthetic and then into surgery, she cannot feed after 2am in the morning. As you can imagine, we will have one very unhappy baby throughout most of Monday morning.

New photos.

Photos from July 18^th.

Take care and have a great week.

Wayne, Katie and Sadbh.