Sadbh's update - day 50

Two more nights to go!!

What an exhausting day for Katie. Awake at the crack of dawn to feed a hungry Sadbh. The minute she was done, back to back meetings started with all the different care coordinators, insurance company case managers, medical equipment account representatives, and on and on. Due to such a hectic schedule, she didn't get to leave the room until after 2pm. That's a long day without food or a bathroom break. 

I suppose it's good to see everyone rally to ensure that we get out as soon as possible, but it sure is exhausting. 

Tomorrow we meet with the four nurses that are assigned to us, and after our meet and greet, they will spend the afternoon training with the respiratory therapist on infant trach care etc. 

Our medical equipment rental company is also scheduled to deliver all the specific equipment and supplies to our house tomorrow, however this is proving to be a very difficult task for them. Apparently they have not been able to get our order correct and if they cannot get this straightened out tomorrow, it could potentially delay our departure date from Children's. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626857506896/

Fingers crossed for an easier and successful day tomorrow.

Take care for now,

Wayne, Katie and Sadbh.

Sadbh's update - day 49

I don't know if it was because of the holiday weekend, or what, but Children's seemed to be especially quite today. 

Katie and I took advantage of a very kind offer from Angie to babysit Sadbh for a couple of hours, so we went home to set up Sadbh's bedroom downstairs. Angie is a friend that we recently met due to Sadbh's situation. Angie has been a great source of comfort and advise for Katie and I. 

Alibaba then took over for another couple of hours allowing us to get a lot done at home. The rest of this week is going to get very crazy soon and we figured that we would try to get as much done at home beforehand.

We returned in time to give Sadbh a nice bath and to change out her trach ties. We are extremely lucky, since Sadbh usually falls fast asleep when we change out her tracht ties each day. Apparently, most kids get very fussy when this procedure is carried out, which could end up with the trach coming out. I'm so glad that she's a very relaxed child, she obviously didn't get that from me. 

The distant view from Sadbh's room is quite beautiful, especially on a lovely day like today. The view looks west across the lush tree tops over the University District, and when the sun starts to sit low, the room glows in it's golden splendor. We opened the curtains, pulled out the sleeper bed and the three of us stretched out on the bed and basked in the sunlight. Perfect way to end a great day.

I can't believe it's been seven weeks. At times it seems that the last seven weeks just blasted by, and on the other hand it seems like an eternity. I might have mentioned in a previous e-mail or blog, that Katie's pregnancy was quiet straight forward and easy for the most part, relatively speaking. Our Doula had asked, a few weeks prior to Sadbh's arrival, if we had any fears or concerns. For the most part, I didn't have any concerns, however, for some reason or other, I did worry if our child would be a special needs child. Since the pregnancy went so well, I didn't think we would end up in that situation. 

There have been many times since Sadbh arrived, that my world has come crashing down around me, as it has for Katie. However, we do feel so lucky that our situation is very manageable and in the grand scheme of things, could be a lot worse. 

Spending so much time at Children's, it's hard not to notice so many unfortunate kids with all sorts of health issues. Many will recover with flying colors, some will not. It puts everything into perspective. 

At the end of the day, I know that there is a much bigger picture here for me, and I hope to figure that out soon.

Three more nights to go and we can't wait! 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626847614620/

All the best,

Wayne, Katie and Sadbh.

P.S. Sadbh took her first trip to Starbucks today.

Sadbh's update - day 48 - 7 week birthday

Hope everyone had a nice relaxing Sunday.

With Sadbh's discharge date coming up, it's now time to jump into action and to rearrange the house so we can be ready for when she get's home.

Katie and I had remodeled the nursery in time for her birth, however we now have to move her room downstairs to a larger bedroom, due to the extra equipment that we will be taking home with us.

I spent a good portion of the day today clearing out the basement and then dismantling furniture and moving it all down to the basement for storage. Tomorrow's plan is to move all Sadbh's furniture down to the new bedroom.

4 nights to go!!!

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626713820725/

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 47

Sadbh had a very relaxing day today and spent most of it in the company of Alibaba (Katie's mom, known as Alibaba by all her grandkids). 

Katie and I went to a friends wedding this afternoon and got to catch up with a lot of close friends for the first time in almost two months. It was great to see everyone, but it was also quite emotional since we were definitely missing someone. 

That said, we have only five more nights here at Children's and it's home time. 

The wedding was beautiful and the weather was perfect. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626705176581/

Take care,

Wayne, Katie and Sadbh.

P.S. Congratulations Fayee and Bruce!

Sadbh's update - day 46

We completed our trachea maintenance training today and we are now mobile throughout the hospital.

I've had Sadbh's car seat in the back of my car for the past couple of months, in preparation for her initial arrival, and our trip home from the hospital.
Well, we got to put the car seat and her stroller to use today as part of our final training test. This training involved setting up all the portable equipment in the stroller and taking Sadbh out and around the hospital. Every so often we would stop to suction her trachea, or we would administer oxygen by using the resuscitator bag and oxygen canister. Everything went great and we eventually got to take Sadbh outside for the very first time.

This was such a momentous occasion for us and Sadbh even experienced a few little drops of rain, flowers and the occasional insect. I'm happy to say that Sadbh slept for the most part. She didn't seem too impressed whatsoever.

More great news, we heard back from one of the home care nursing agencies, and they have four qualified nurses ready for us and we will be meeting with them next Wednesday.

This means that we are more than likely going to be discharged from the hospital next Thursday!!! The light at the end of this tunnel, is getting very close.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626822597882/

Have a great weekend,

Wayne, Katie and Sadbh.

Sadbh's update - day 45

Sadbh had a very comfortable day today, however I wish I could say the same for Katie.

She had an extremely stressful day with back to back meetings all day. Meetings with the care coordinators, the insurance company, the medical equipment rental representative, and not to mention our training classes. I cannot believe how she can manage all this, especially after getting only 3 hours sleep each night for the past week. 

We did receive a call from my insurance company this evening and they have approved the need for home care nursing. This is fantastic news!!! 

Next steps now are to interview the four different home care nurse agencies to see who's most compatible and then figure out how soon we can get our baby home. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626815215062/

Thanks again for all the well wishes!

Wayne, Katie and (soon to be home) Sadbh

Sadbh's update - day 44

Apologies for not getting this posted sooner, Blogspot appears to be having issues again.

Wednesday was a quiet and restful  day for Sadbh, but a very busy one for mommy. Katie spent a lot of time on the phone with the insurance company and one of the home care agencies. We are optimistic that we should have an update on Friday of what our next steps are. 

Sadbh received a routine hearing test today and passed with flying colors. This was good for obvious reasons, but it was also good since she was serenaded later on, just in time for her nap time.

She is also getting closer to going completely wireless, as she no longer needs the heart rate or respiratory rate monitors. They will however, continue to monitor her oxygen saturation levels and pulse rate.

She is also turning into a bit of a cheeky monkey, check out the photo of her flipping the bird. She's grounded!!

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626808220646/

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 43

Sorry for not sending out an update last night. For some reason or other, I was unable to log onto blogspot to post the latest news.

We had our third training class today (Tuesday) and I have to say, this was the toughest challenge I have had to date.

Not to sound macho or anything like that, but I've parachuted out of three airplanes, bungee jumped from a bridge, I've rode my motorcycle at speeds up to 145mph, but I've never had to change out a trach before. This was the most stressful, most nauseating experience I have had to deal with, ever! My stomach was turning for hours. 

That said, I was able to change it out and Sadbh was a happy little camper for the rest of the day.

Both Katie and I have insisted on an aggressive training schedule and we hope to complete the rest of our training by the end of the week.

The care specialist's at Children's are on board, and if we can get the insurance company on the same schedule, we should be able to get Sadbh home in a couple of weeks.........

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626676463645/


Thanks,


Wayne, Katie and Sadbh. 

Sadbh's update - day 42

To ensure Sadbh has on demand in room dining, Katie has started her 24/7 stay at Children's hospital. As you can imagine, this is quite exhausting and will get more so as the days go on.

Promising news, our insurance company has acknowledged the need for home care nursing. This doesn't necessarily mean that we will get the full 16 hours per day, however they are reviewing their policy to see what we are qualified for and we should be able to start negotiations by the end of the week.

Sadbh got to meet her cousins in Toyko last night via Skype, she's become quite the world traveller, despite not having to leave the comfort of her hospital room.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626792991516/

All the best for now,

Wayne, Katie and Sadbh.

Sadbh's update - day 41. 6 week birthday!!

Hope everyone enjoyed their weekend.

We got to Skype with the grandparents back in Cork for over an hour today, and it was such a delight for my parents. The last time they got to see Sadbh, she was on the ventilator and was heavily sedated, today she was extremely alert and happy. Serious improvements between then and now.

Sadbh also got to meet Andrew and Erin this evening and was serenaded by Andrew.

Sadbh's feeding is improving every day. So much so, she even pulled her nasal feeding tube out today to prove that she doesn't need it any longer. Once she's on the boob 100% of the time, Katie will have to stay at her bedside 24/7.

I suppose, part of good feeding comes the occasional barfing. I received my first "barf on shoulder" earlier on in the day, and later this evening,  Erin and Andrew witnessed Sadbh's first projectile barf. Everything was cleaned up within no time and all was good with the world.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626658926533/

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 40

A very lazy Saturday was had by all. It was like another day at the spa for Sadbh. She had a nice warm bath and plenty of pampering.


Katie and I received some additional practice in suctioning and trach cleaning. It's still quite stressful, but it's certainly getting easier each time.


Sadbh also got to meet her cousins in Singapore and in New Zealand via Skype. It was truly fantastic for us to see our families reaction after meeting our baby girl. I can't wait until they can meet her in person.


New photos & videos: http://www.flickr.com/photos/langer-dan/sets/72157626775779676/


Take care,


Wayne, Katie and Sadbh.

Sadbh's update - day 39

Happy Friday everyone.


Day two in our trach training was extremely nerve wracking. Practicing on a doll is fine, however when we had to change out Sadbh's trach ties and clean the area around the trach and her neck, I don't think I have ever been so stressed in my life. That was around noon today, and I'm still sick to my stomach.


Evidentially Sadbh has been missed by the great team in NICU. All week she has received pop in visitors from all the great nurses that took great care of her over the first five weeks. Despite the situation that we are in, we have been so fortunate that Children's has such an amazing team of caring experts.


Waldo was one busy guy today, I couldn't believe the amount of work he was getting done.


New photos: http://www.flickr.com/photos/langer-dan/sets/72157626643665185/


Take care,


Wayne, Katie and Sadbh.

Sadbh's update - day 38

After a week of trying, we finally got assigned a case manager at our insurance company. Hopefully we will start to see this pay off in the coming few days.

We also started our intensive trach maintenance training today and we ended the class by practicing on Sadbh. This was terrifying to say the least, but she's still alive and didn't really fuss at all. Our next class tomorrow will be about cleaning the trach and changing out the neck strap etc.

Sadbh also got to meet our God-daughter, Clodagh, for the first time. Both girls were quite shy at first, but within no time, a new friendship was forged.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626637194991/

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 37

Some small, but positive progress today. The care coordinator was able to get the insurance company talking with one of the nursing agencies, and our hope is that they will be able to recognize Sadbh's needs and come to an agreement to meet theses needs. 


Home nursing agencies are typically set up for adult care, so we have widened the search to another few home care nursing agencies in an effort to source a team of compatible, qualified nurses as soon as possible.


Sadbh continues to do well with her feeding, much to the delight of the occupational/physical therapist and her proud parents.  


Can you find Waldo today?


New photos: http://www.flickr.com/photos/langer-dan/sets/72157626754527036/


All the best,


Wayne, Katie and Sadbh. 

Sadbh's update - day 36

I forgot to mention yesterday that Sadbh's weight is now up to 8lbs. She's starting to turn into one chunky monkey.
The OT/PT feeding training paid off big time today, Sadbh was able to feed directly from mom on the first attempt.
Later attempts were not as successful, however we have plenty of time to practice. I think all the excitement wore her out, and as a result led to her fussiness.  
Katie had a fairly tough day today. With all that's going on, every so often you just hit a wall. That said, it's so impressive to watch as her motherly instincts kick in when she's around Sadbh, nothing else seems important any more.


Sadbh's new room has a great view of the construction site and Waldo should be fairly easy to spot, most days.
New photos: http://www.flickr.com/photos/langer-dan/sets/72157626622663105/
Have a lovely evening,
All the best,
Wayne, Katie and Sadbh.

Sadbh's update - day 35 continued

Today was a big day for Sadbh. She finally got discharged from NICU and is now sharing a double room with another baby with a trach in the recovery ward.

Apparently, she was extremely alert during her trip from NICU to her new digs and she appeared to enjoy the ride.

Occupational Therapy & Physical Therapy (OT/PT) came by to test her feeding and she managed to drink 30ml of mother’s milk straight from the bottle. Later on in the evening, she was tested again and passed with flying colours.

While it’s fantastic to see these major improvements, we are reluctant to get overly excited, as we know the next chapter we are now facing will not be an easy one. In order to get Sadbh home, we have to employ the services of home care nurses, however we must first get the approval of our health care insurance companies to do so. And so far, this is proving to be quite the effort. Thankfully we have a dedicated team at Children’s helping us with this and I’m sure we will have some positive results soon.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626615035233/

Thanks again for all the well wishes and prayers!

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 35

Sadbh's meeting with ENT went well this morning and Dr. Inglis was pleased with how her Trach healed.

She has officially moved out of NICU and is now located on the recovery floor.

New Photos: http://www.flickr.com/photos/langer-dan/sets/72157626736790634/

Cheers,

Wayne, Katie and Sadbh

Sadbh's update - day 34 (5 week birthday)

Hope you all had a great weekend.


There are moments when it's hard to imagine what we have been through for the past five weeks. Yesterday, while having lunch in the family center, I noticed a young couple who just arrived in the NICU, and the look of sorrow and despair on their faces broke my heart. That was Katie and I not that long ago.  


ENT is scheduled to change out Sadbh's trach tomorrow morning around 6am and if everything looks good, she could be moved out of NICU shortly thereafter. 


Our trach maintenance training is scheduled for later in the week, and the care coordinators are working hard with the insurance company to schedule home care nursing. Unfortunately they don't seem to be gaining any traction so far. Hopefully this week they will yield some positive results.


New photos: http://www.flickr.com/photos/langer-dan/sets/72157626731102264/


Take care,


Wayne, Katie and Sadbh.

Sadbh's update - day 33

Hope you are all having a good weekend.


A big milestone was reached today. Occupational Therapy & Physical Therapy (OT/PT) came by this afternoon to start work on training for oral feeding. The device they use is a modified pacifier with a feeding tube that penetrates the tip and that's connected to a syringe on the other end. The procedure is to fill the syringe with 5ml of milk, and insert the binky (pacifier) into Sadbh's mouth. With that, Sadbh should start sucking on the binky and the objective is to see if she can swallow correctly, or to see if there was a potential for her to asphyxiate.


The process for oral feeding, while protecting her airway is to suck, swallow and breath. Sadbh nailed it first go. The OT/PT specialist figured that she might be ready for oral feeding part time by Monday. 


New photos: http://www.flickr.com/photos/langer-dan/sets/72157626598386003/


All the best for now,


Wayne, Katie and Sadbh.

Sadbh's update - day 32

Friday was another smile filled day for Sadbh. 


For the past few weeks, Sadbh has been fed continuously via a nasal feeding tube in an effort to bulk up her weight. Since she is now in a stable condition, they have changed her feeding to every three hours, for an hour and a half at a time. As a result, Sadbh is experiencing hunger pains more often than before. 


I was able to get a bunch of great photographs of Sadbh today, along with some cute videos of her hic-ups and smiling in her sleep with her eyes open. Too cute indeed.


The plan for the weekend is to meet with the Occupational Therapy & Physical Therapy folks to start work on catching up on her development and all that good stuff.


New photos + videos: http://www.flickr.com/photos/langer-dan/sets/72157626720419198/ 


Have a great weekend,


Wayne, Katie and Sadbh.

Sadbh's update - day 31

Sorry for not getting the update out sooner, there was an issue with the blog site.

Anyway, Thursday was a comfortable day for Sadbh. Lots of cuddles with everyone and lots of smiles.

We received our trach training schedule and also a tour of the recovery ward. Since everything is going according to plan, it is looking like Sadbh will be moved out of NICU next Tuesday, the 24th.

More good news, Kaelin went home Thursday night.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626711032548/

All the best for now,

Wayne, Katie and Sadbh.

Sadbh's update - day 30

After all the excitement yesterday, Sadbh had a great night's sleep. According to her nurse Sara, she only woke up a couple of times and once she got her binky, she was back to sleep in no time. Very different from the previous few nights.

Today was a very good day and Sadbh spent a lot of it awake and quite alert. Her pain medication was scaled back from Morphine to Tylenol and she did not really show any serious signs of discomfort. 

Since she's no longer on the ventilator, it is not necessary to keep her swaddled up so tightly, and as a result, she's fun to watch as she waves and punches her little arms about.

Without the breathing tube, she now has the freedom, more or less, to do the things that regular babies do and it's great to see that happen at long last.

While this progress is very positive, it's also very bitter sweet. Leaving Sadbh behind each and every day is heartbreaking and emotionally exhausting. We know things will improve, however we at still at least 7 weeks away from getting her home with us.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626695000500/

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 29 Photos

http://www.flickr.com/photos/langer-dan/sets/72157626687737764/

Sadbh's update - day 29

Sadbh's 3:30 appointment was moved up to 1:30 and within 45 minutes she was back in the NICU, with a trech and hooked up to the ventilator as a precaution. The procedure went really well and Dr. Inglis expects that the stoma (opening in her throat) should heal within a week. 

They just x-rayed her chest and airway to check how everything looks on the inside, and they also checked her blood gas level. Everything came back great, so the plan is to take her off the ventilator and use a Trach collar to humidify the air that she is breathing in. This means that Sadbh will be breathing on her own, without the aid of a ventilator. This is a huge milestone. 

Photos of our beautiful princess to come shortly.

Thanks for all the kind words, prayers and positive words of encouragement. 

Wayne, Katie and Sadbh.

Sadbh's update - day 28 (4 week birthday)

Today, being Sadbh's four week birthday and Mother's day, was spent with mother and daughter cuddling for most of the day. Although I did manage to get a few snuggles in myself. 

Sadbh spent a most of the day sleeping and occasionally getting fussy. Fortunately it was all very manageable and were able to give her a nice bath, which she enjoyed for the most part. It wasn't the typical "Spa day" that most mums get to enjoy on Mother's day, but I don't think anyone here complained. 

Tomorrow is her big day and currently she is scheduled to go to the operating room at 3:30pm. This schedule could change, so as a precaution, they will be taking her off her feeds at midnight tonight. She will receive a fluids and glucose via IV to keep her going. I'm sure that she's going to be one cranky, hungry baby by morning. 

It's always very difficult leaving Sadbh behind when it's time for us to go home, despite the knowledge that she's in the best possible care imaginable. That said, it is comforting that we are getting closer every day to getting her home.

Funny story, Katie and her mum went to use one of the vending machines to purchase a bottle of water. Peggy inserted a $5 bill, received her bottle of water, and the machine started to spit 25 cent coins out onto the floor, one at a time. Eventually there was $3.50 (14 coins) scattered all over the place. Now I know why those two kids, in one of my earlier e-mails, search around the vending machines for coins every day.  http://www.flickr.com/photos/langer-dan/5623003886/in/set-72157626503909248/

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626554518287/

Happy mothers day,

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 27

Saturday was very quiet, for the most part in the NICU. Sadbh was quite fussy with her breathing tube and the respiratory therapist had to re-set it a couple of times. Eventually they gave her more morphine to make her more comfortable, and consequently she spent most of the day sleeping. I hope she doesn't expect this treatment when she gets home.

Our plan today is to keep her as comfortable as possible and we hope to give her another bath prior to her big day tomorrow. It is her one month birthday after all.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626550137983/

Happy Mother's day (in the US)

Take care for now,

Wayne, Katie and Sadbh.

Sadbh's update - day 26

Sorry for not posting an update yesterday.

Despite being as ready as we thought we could be for our meeting with the ENT team, it ended up being an extremely exhausting day, both emotionally and physically. By the time I got home last night, I did not have the energy to send out an update.

The meeting went quite well considering. Dr. Inglis went over Sadbh's case in great detail and presented us with a number of options to allow her to breath without the aid of a ventilator. This does not actually resolve the issue with her vocal cord paresis, but will allow her to leave the hospital sooner.

Option number one is the Tracheotomy.

Option number two is a Suture Lateralization. 

This involves two incisions, one above, the other below the vocal cords, and stitching one of her vocal cords back against the airway. This allows the airway to remain open and unobstructed. This is common practice in adult patients, however this can be a complicated procedure for newborns and infants since their airways are much smaller and do not have much room. 

There are a number of concerns for this procedure. 

One concern is that the vocal cord could be further damaged by the stitching. 

Another concern would be if the stitching were to break, then our emergency reaction time would be only a couple of minutes and the result could be potential brain damage or suffocation due to lack of oxygen. 

Option number three is Botox Injection to the vocal cords.

Without knowing the cause of Sadbh's vocal cord paresis, one of the theories is that since the muscle that closes the cords is typically stronger than the muscle that opens it, it might be overpowering the opening muscle. By injecting Botox, it would allow the vocal cords to remain open constantly.

The risk here is that the botox could increase the swelling in her airway, causing further airflow blockage.

Both Katie and I agreed that the Tracheotomy was the safest solution and we are scheduled for this procedure at 3:30pm on Monday. As mentioned before, the actual placement of the trach only takes about twenty minutes, however Sadbh's recovery time can take up to a couple of weeks. From there, she will be moved into the recovery floor for another four to six weeks.

During this time, Katie and I will receive comprehensive training in CPR and respiratory home care. We will be also interviewing home care nurses to find compatible, well trained individuals to care for Sadbh after we leave Children's. 

While we don't know how long Sadbh will have to live with the trach, we are comforted in the knowledge that it will allow her to develop and grow as a baby. This is going to be one huge challenge and life adjustment for both Katie and I, but we are in it for the long haul.

 

Dr. Inglis explained that it could take from six to twelve months before we see any change in her cords, if any. At that time, if we don't see any improvements, we would then start to look at surgical options.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626669169022/

All the best for now,

Wayne, Katie and Sadbh.

Sadbh's update - day 25

Good evening all,

Sadbh had a bit of an eventful night last night. For some reason, she needed to have her new breathing tube taped down and as a result of all the commotion her nasoduodenal feeding tube was accidentally pulled out. Not a big deal, but it does cause some discomfort when replacing it and additional x-rays. The poor girl has had so many x-rays, and she's only 25 days old. 

Another shot of Morphine and she was right as rain.

She slept for most of the day, however just when I arrived around 3:45 this afternoon, she woke up and we cuddled for almost three hours. I have to say, seeing her alert with those big eyes was fantastic. Not to sound sappy, but we just stared at each other for the whole time, until she grew very bored and fell asleep.  Cheeky monkey!

Tomorrow we have a two hour meeting with Dr. Inglis, the NICU team, the respiratory therapist and our social worker to schedule the tracheotomy and discuss training, care and everything else. I'm sure it's going to be a very difficult meeting, but as long as it means that we can get Sadbh home soon, we are ready to do whatever needs to be done.

The trach will not solve the issue with her vocal cord paresis, however it will allow her to breathe without the need for supplemental air and the hope is that with time, her vocal cords will resolve themselves. If we do not see any improvement after a year or two, we will then research surgical options. But for now, the trach will allow her get home and start growing and developing like any other baby.

Miss Kaelin is doing very good in the recovery ward and they are hoping that she will be able to be fed by mouth in the next day or so. 

I did see Waldo trying to break into one of the construction dump trucks, but unfortunately I didn't have my camera with me so you'll just have to take my word for it.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626533121035/ 

Have a great evening,

Wayne, Katie and Sadbh.

Sadbh's update - day 24 part 2

Unfortunately our trial period of a few days ended a lot sooner than we anticipated. 

Sadbh laboured long and hard to breath without the ventilator and we decided that it would be best to intubate her again with the breathing tube. Our next steps are to meet with Dr. Inglis tomorrow to start the procedure for a tracheotomy. 

It was so good to see her for those few hours without the tube in the way of her mouth, and to get to see her smile from time to time. You know, some say that when babies smile in their sleep, they supposedly see angels. Well all I know is, when I see my baby smile in her sleep, I see one beautiful angel right there in front of me. 

We also noticed that her eyes are changing colour from dark blue to a brownish colour. It is truly amazing the changes you see from day to day.

I've posted one photo of Sadbh, post intubation. At this stage, she was heavily sedated on fentynal and she was paralyzed with the aid of drugs. What kills me is when I look into my daughters eyes, I can see deep into her soul and despite everything that is going on, there is nothing I can do to fix this situation. Other than be there for her of course.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626526125961/  

Have a good night.

Wayne, Katie and Sadbh.