Sadbh's update - day 80

Today started off quite bad. After forging our way down the stairs, through the fog of perfume, we discovered that the saline drip bag, that is used to humidify Sadbh's trach collar, was empty. It was a serious effort for both of us, not to completely lose it with the nurse. That's not to say that we didn't read her the riot act.

 

As soon as the agency opened for business today, Katie and I were on the phone demanding this nurse to be taken off of our case. After yet another dog and pony show, we eventually learned that tonight is the last night we will be working with this nurse.

Still frustrated, Katie contacted the health care provider to see if there was anything they could do to allow us to change our nursing agency, and it looks like they are working hard to help us out. 

We immediately contacted a couple of agencies to let them know that they should kick start conversations with the insurance company.

I hope we can get this resolved as soon as possible as it's starting to wear both of us down.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626964647441/

Photos from April 30th: http://www.flickr.com/photos/langer-dan/sets/72157626494523829/

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 79

Sadbh had another dinner date with Jude tonight, but it seemed that neither of them were too interested. Despite sitting next to each other for the evening, neither one of them spoke to each other, and both feel asleep within a few minutes. Made for a very awkward evening.

It was actually a lovely evening, since the two babes were snoozing their little heads off, we got to enjoy a nice dinner with Kate and Jeremy before they move back to San Francisco tomorrow. Safe travels and hope to see the three of you again soon!

Frustration with the nurses continued tonight after we got home. The same nurse that we complained about was on duty tonight, and despite being informed that she should not be wearing perfume, there was still a very strong scent. She explained that she hasn't worn perfume in weeks, however I can safely say that that is incorrect, and I even pointed out that I could smell it tonight. We also went over the suction equipment and got a bunch of excuses. It's not like we don't have enough to worry and be concerned about.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157627082021848/

Photos from April 29th: http://www.flickr.com/photos/langer-dan/sets/72157626487455085/

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 78

More frustration with the home nursing today. The night nurse that we are trying to get rid of, caused us additional stress last night.

Keeping in mind that it's not personal, we actually like this woman on a personal level, however as far as professionally taking care of our child, now that's a totally different matter altogether.

This particular nurse wears a very strong perfume, and we have asked her on several occasions not to. Realistically speaking, a nurse or doctor should never wear strong smelling perfumes, deodorants or after shaves, as it might cause nausea or irritations. Especially with a child with a tracheotomy, since they do not have a way to filter these fumes and aromas.

Katie also learned last night while feeding Sadbh that this nurse did not understand how to check the suction machine to make sure that the settings were not too strong for an infant.

The suction device that we have has a gauge that tops out at 750, for an infant like Sadbh, the maximum setting should be 100, anything over that can cause respiratory distress. This is very easy to check and to reset if necessary.

While Katie was feeding Sadbh during the night, she asked the nurse to assist with suctioning. As the nurse was preparing to suction, Katie asked if the setting was correct, since this is common practice for us every day. First, the nurse couldn't read the setting, and had to go find a flash light to be able to see the gauge. She determined that the setting was at 120 and Katie explained that it had to be reduced to 100. Keep in mind, this is all happening while Sadbh is needing to be suctioned.

 It was at that point we learned that she was unable to make this adjustment to the machine, and worse, that she was probably using the suction on Sadbh with the higher settings previously through the night.

Needless to say, we had a very frank conversation with the agency today, to find out where we were in the process of replacing this nurse, and the one that we let go from last week. They were very apologetic and will be addressing the perfume, and equipment training issues immediately. Very frustrating to say the least.

Homeopathy as defined by Wikipedia, is a form of alternative medicine in which the patient is treated with highly diluted minerals that are believed to cause healthy people to exhibit symptoms that are similar to those exhibited by the patient. 

Hopefully I haven't lost you after that.

Within the first couple of weeks of Sadbh's life, we experimented with a Homeopathy remedy as suggested by our good friend Dr. Karina Uhl in Germany. We decided to end that treatment after a couple of days, since Sadbh was experiencing respiratory distress and there was so much going on.

Considering that we are now settled in at home, and that Sadbh is quite comfortable and can breathe without the need of supplemental air, we figured it was time to revisit Homeopathy to see if this can assist in her recovery.

Sadbh had an appointment this morning with a Homeopathic Therapist and after reviewing her case, she prescribed Causticum, which is the same remedy that Karina recommended almost three months ago.

Causticum is prepared by taking slaked lime and sulfate of potash and combining them. They are dissolved in purified water, and this solution is then further diluted and then shaken vigorously. What remains contains virtually no traces of the actual mineral.

We are planning on starting this treatment tomorrow and since she is in such better form compared to the last attempt, the hope is that we will be able to observe her reaction and see if there are any benefits to this remedy. It's definitely worth a shot.

Sadbh got to Skype with our friends Kati and Sev in Boston tonight. She was actually sleeping her little head off, so she missed all the excitement. We will have to do it again while she is awake so she can join in on the conversation. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157627074338490/

Photos from April 28th: http://www.flickr.com/photos/langer-dan/sets/72157626480935393/

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 77

Sadbh was in a good mood for most of the day today. She had a few occasional moments of fussiness, however this was usually very short lived. 

As the days go on, it's apparent that she is an extremely mellow baby and seldom get's fussy. She sleeps great every night, waking up only once to be fed. 

Katie has been researching vocal cord paralysis and vocal cord paresis (partial movement, but not enough) and is finding quite a bit of information and support online. 

After I got home from work today, I read one of the sites dedicated to babies with trachs and came across the following entry. It was a very emotional read, and it gives us some hope. http://www.trachkids.org/members/petersdaddy

Unfortunately, there are a lot of sad stories posted to these sites of children that take a lot longer to heal, and some even have to undergo extensive surgery. For a large number of these kids, it can take up to ten years before they see improvement, and for many, it can be a roller coaster of a ride.

I am optimistic that Sadbh's vocal cords will start working at some point, but I'm not going to get my hopes up that it's going to happen soon.

Our Goddaughter Clodagh, who is just over two years old, has been quite fascinated when we suction Sadbh's trach. In order not to scare her, Katie explained that we were simply sucking out all the boogers, and when she was done, Katie said, all gone, much better now.

Over the weekend, Clodagh was playing with one of her dolls, she placed a straw to her neck and said "here comes the boogers out. Much better". 

Too cute!

Check out the size of Sadbh's belly in the bath tub in the following photos.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626941283339/

Photos from April 27th: http://www.flickr.com/photos/langer-dan/sets/72157626471695417/

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 76

Sadbh had a nice relaxing day today, and got to meet a new friend that is only a week older than her.

Our friends Kate and Jeremy came by and brought their little man Jude. 

We are so used to the fact that Sadbh does not have a voice and even cries in silence, so it was a surprise at first when we heard Jude crying or making baby sounds. We quickly realized how things should be for Sadbh, hopefully it wont be long before we can hear those same sounds from our little girl.

Sophie, who is an old friend of mine, stopped by to meet Sadbh today. I had not seen Sophie in a couple of years, so it was great to catch up after all this time, and to get a chance to show off our princess.

Since my parents are so far away, we often use Skype to chat and so they can see Sadbh live. Unfortunately, for some reason or other, my folks are unable to Skype at the moment, so they have been unable to see Sadbh live in the last couple of weeks. Tonight when we chatted over the phone, I placed the phone to Sadbh's ear so my mum and dad could spend a few minutes chatting to her. Before long, Sadbh was grinning from ear to ear with the occasional big laugh. 

I have to admit, this was the best weekend we have had in a long time. Sadbh was in great form, and she seems to be growing and developing quite well. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626932386833/

Photos from April 26th: http://www.flickr.com/photos/langer-dan/sets/72157626464234909/

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 75

Saturday was a fairly relaxing day for Sadbh. 

To prepare for her trach change today, we had to manage things really well and coordinate with Sadbh's feeding and sleeping schedule. This meant that after she was fed, we had to give her plenty of awake time with some tummy time and other development exercises. We had to keep her awake long enough to wipe her out, but also not too long so she would end up having a melt down. Just before allowing her to go to sleep, we then gave her a nice bath to relax her.

Once we achieved all of that, we then tightly swaddled her and she was out light a light. That was the easy part.

Trach tie cleaning is a two person job, one to hold the trach in place, preventing it from accidentally coming out, and the other takes care cleaning the area around the trach, the neck and replacing the ties and other bits and pieces. Trach cleaning was very easy today, since Sadbh was in such a deep comfortable sleep, however when it came time to change out her trach, both Katie and I were terrified. 

As I mentioned yesterday, we had only performed this procedure once before, and that was under the guidance of the Respiratory Therapist and Nursing staff at the hospital.

We had everything set up and we were ready to go. I have to be honest, I tend to be the type of person to just jump in and get it done. Since Katie managed the trach tie cleaning, and I was holding, the plan was for Katie to take over holding and I would insert the new trach when Katie removed the existing one. It took me a while to get mentally ready for this and my stomach was in knots. 

After counting to three, Katie removed the existing trach, and the stoma (hole in Sadbh's neck) seemed to disappear right before my eyes. I pushed the new trach in and about mid way, Sadbh lurched forward and rolled her head to the other side. I was convinced that I had done something wrong, but in fact, everything went well. Mission accomplished. 

As you can probably tell by now, Sadbh is well used to being in front of the camera. Since summer is finally here, we dressed her up in a beautiful summer dress and Sadbh had yet another photo shoot session. She didn't seem to mind, in fact, she seems to enjoy being photographed. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157627052260782/

Take care,

Wayne, Katie and Supermodel Sadbh.

Sadbh's update - day 74

Poor Katie spent ages on the phone with the medical supply company on Friday. When she's not feeding or caring for Sadbh, she's on the phone trying to sort out the nursing, or equipment, or scheduling appointments etc. 

We typically place a weekly order to replenish items that we need to keep stock of, however for some reason or other, they have not been able to successfully fill our order for the past couple of weeks, and as a result, we are running very low on a number of important items. 

Thankfully, Katie's hard work paid off as we received a large delivery of our much needed supplies by the end of the day.

Sadbh made her first trip to Costco, almost. She made it as far as the parking lot and since she was fast asleep, we figured it was best not to disturb her. 

After Costco, we dropped by Gerry and Sarah's house for an impromptu BBQ and Sadbh got to hang out with a few of her friends. Sadbh actually spent most of the evening either sleeping, eating or farting, but it was great to get her out of the house and more used to socializing.

This is also great for both Katie and I, as we are pushing ourselves out of our comfort zone and it's getting surprisingly easier, day by day.

When we got home, Katie fed Sadbh and put her to bed. Typically, this is when Princess Angry Bird makes an appearance, however tonight, Sadbh gave Katie a huge flirtatious smile, and continued to do so for a while, until she fell asleep. 

It's moments like this that makes us forget all the hardships that we have encountered on this journey so far.

Saturday is going to be extremely stressful for both Katie and I as it will be the first time we change out Sadbh's trach without the guidance of the nurses from Children's Hospital. We change her trach ties on a daily basis, however we have to change out her trach once a month. I'm hoping that we will be dealing with a happy, sleepy Sadbh and not Princess Angry Bird.

A funny story that happened during one of our outings this week. We were sitting next to a couple of young women at a bistro on Capitol Hill, and since Sadbh is the cutest baby in the world, they were constantly checking her out. As they got up to leave, one of the ladies came over and said "can I pet it?". It was quite apparent that this young lady was as sharp as a marble. Trying to stifle my laughter, I said no, and explained that my little girl was sick. I really wanted to say "No! She's not a dog, now go away you silly woman", but she seemed genuine and concerned, so I went along with it. 

She asked what was wrong and I explained that the had to have a trach due to an airway blockage etc. She proceeded to ask what a trach was and on and on. It was very amusing as she sounded very much like Paris Hilton. Eventually, after I couldn't take any more of her child like questions, I said to her,  "She's very pretty", also sounding like Paris Hilton. It was quite funny, but I suppose you had to be there.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157627044279734/

Photos from April 24th: http://www.flickr.com/photos/langer-dan/sets/72157626451941633/

Have a great weekend.

All the best,

Wayne, Katie and Smiley Sadbh.

Sadbh's update - day 73

Sadbh had a great day today. Ali-Baba came by and they both got to spend some great quality time together.

It's a constant learning curve, trying to figure out what keeps Princess Angry Bird at bay. 

Tonight's blog is very sparse, and I apologize for that. It's been a hectic day with work and all, but I promise to make up for it tomorrow.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157627034284586/

Photos from April 23rd: http://www.flickr.com/photos/langer-dan/sets/72157626562921026/

Have a great evening,

Wayne, Katie and Sadbh.

Sadbh's update - day 72

Today was a very tense day, especially for Katie. Our day nurse made a couple of poor decisions that almost caused Sadbh to get injured. The hose for the trach mist collar is not very long, and since it's hooked up to the humidifier on one side of the bed, the rule of thumb is that we only take Sadbh out of her cot on that same side. 

Today, in an effort to calm Sadbh down, our nurse picked her up from the opposite side and also from the furthest end of the cot. Since the hose was pulled tight, it caused the humidifier to topple over. Fortunately, Katie happened to be watching the video monitor in the next room, just as all this was starting to happen, and was quick enough to come in and catch it before any harm was done. 

I know that accidents happen, but this was a stupid mistake and we have asked the agency to take her off our case. 

Trach care was extremely stressful tonight, Princess Angry Bird made a comeback and was very upset. Unfortunately, she waited until we had the trach ties completely removed before she made her appearance, so it was quite the effort to get her neck cleaned up, and the new clean ties back on. 

We've got to look forward to this, every single day. Good times!

After she finally calmed down, we took her up to Capitol Hill for a nice long walk and some dinner. Dinner for her parents actually. We were quite lucky as she seemed very content and did not kick up a fuss. 

Remember the store clerk in Trader Joe's some time back, the guy who went on and on about spending his day with his new baby and how it got both Katie and me extremely depressed, since Sadbh was still in NICU at Children's? 

On our way home tonight, we stopped off at Trader Joe's to pick up a couple if things, and we bumped into the same guy in the fruit and veg section. I could tell he was quite interested in what we had in our stroller as he kept looking over with a smile. Eventually he walked over and asked how old our baby was, and after I told him, he gave us a huge smile and said congratulations. 

That moment made up for the previous one, ten fold. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157627027054302/

Photos from April 22nd: http://www.flickr.com/photos/langer-dan/sets/72157626562838616/

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 71

Sadbh had a very good day today, and as a result, so did her parents. 

She had an appointment with Dr. Cavanaugh, the Cranial sacral therapist and despite turning into Princess Angry Bird for a moment, the doc felt that there were positive improvements (as far as cranial sacral therapy hippy stuff goes). 

We received many big smiles and laughs from Sadbh throughout the day. It's amazing how your day can go so well when Sadbh is in good spirits, compared to when you have to deal with a frustrated angry baby. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626894810459/

Congratulations to Martin and Aoife on the birth of Sadbh's new friend Conor! Can't wait to meet the little fella.

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 70

Sadbh spent most of the day today sleeping, which can be good and bad. Turns out, it wasn't such a good thing when it came to taking care of her trach care this evening. 

She was so overly tired, it took us several hours to calm her down, and when it finally came time to take care of business, she was extremely fussy the whole time. At one point, she wiggled so much that the trach almost came out of her stoma.

We also had our friend Mick over for dinner, and the poor guy spent most of the evening sitting by himself in the dining room. He was very understanding about the whole situation, and also extremely sympathetic, however I can't help but feel bad.

All in all, we got the job done, and we have learned a lot through this experience. But we are both wrecked. 

New photos (not many tonight): http://www.flickr.com/photos/langer-dan/sets/72157627011365484/

Photos from April 20th: http://www.flickr.com/photos/langer-dan/sets/72157626422947571/

All the best for now,

Wayne, Katie and Sadbh.

Sadbh's update - day 69

Father's day was a little bit stressful, but all in all, we had a pretty good day.

I took over from the night nurse at 6am this morning to allow Katie to sleep in and get some much needed rest. A couple of hours later, Sadbh eventually woke up and fortunately, was in relatively good spirits. 

Later in the morning, Sadbh got in some play time with Clodagh, and as you can see from the photos, she really had a good time.

Trach care today got quite tense for both Katie and I. Sadbh was awake the whole time and was very fidgety. Once we started cleaning the underside of her trach, we noticed a lot of blood on her skin. Katie did a great job at cleaning everything up, however upon closer inspection, it did not look like there was any issues or tears in the skin around the stoma. 

Despite the panic and heightened stress, we finished off the trach care and got Sadbh back to sleep. 

Immediately afterwards, we contacted the ENT department at Children's and were relieved to learn that this is common and unless there is continuous bleeding, we should not have anything to worry about. Phew! 

We took Sadbh out shopping for the first time, and she was as good as gold the whole time. One of the local department stores was having a sale this weekend and I needed to get fitted for a suit. She was so well behaved the whole time, I honestly have to say that she has more patience than I do when it comes to shopping.

Sadbh is proving to be quite the socialite. A friend of mine from back home is currently in town, so we got a chance to meet up for a chat and some dinner. Mick is starting off a bicycle trip from Seattle to LA along the Pacific Coast for the next month or so, and it was great to get a chance to catch up. 

Things got a little bit tense when the food arrived, it seemed that Sadbh also wanted to eat. Fair enough, and Katie to the rescue. Out with the "Hooter Hider" and a short while later, Sadbh was back in daddy's lap, with a nice big burp, a loud fart, some huge smiles, and very large bowl movement. So large, that I was in a state of panic, in the fear that her diaper wouldn't contain it's contents. I was very relieved that her diaper worked perfectly.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157627002712722/

Photos from April19th: http://www.flickr.com/photos/langer-dan/sets/72157626414960637/

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 68

Saturday was a fairly good day for Sadbh. Nothing too exciting or out of the ordinary. 

I wish I could say the same for Katie and I. This situation is really putting each of us to the test and there have been quite a few moments lately where it takes its toll on us individually and as a couple. Both of us end up feeling exhausted, lost, depressed and frustrated with each other.

I know we will continue to have our ups and downs, but I also know that we will overcome this and things will get better.

It might have been the Indian food from a couple of nights ago, and if so, I believe Sadbh has experienced her first case of Delhi Belly. 

Sadbh has been known to have a few spectacular diaper blow outs, as most babies do, however today, I think she seriously out did herself. After a number of extremely loud farts, which always produce a lot of laughs, she ended up with a mess so big, we almost had to replace her.

All of her blowouts to date have been towards her back, this time, and I'm not sure how she managed this, it went all up the front and all over her belly (hence why the term Delhi Belly is appropriate).

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626872252667/

Photos from April 18th: http://www.flickr.com/photos/langer-dan/sets/72157626404263627/

All the best and Happy Father's day! And Happy birthday to my father!

Wayne, Katie and Sadbh.

Sadbh's update - day 67

Friday was such a beautiful day, and it was Ali-Baba's birthday. Happy birthday Ali-Baba!!! Sadbh went on her first long walk around the neighborhood with mommy and Ali-Baba and she even got to meet more of our neighbors. 

We are extremely frustrated with the nursing agency. We received next weeks nursing schedule, and we still have the same nurses assigned to our case. Apparently, it's taking them a lot longer to try to rearrange other nurses schedules to accommodate ours, but after two weeks of back and forth, we are still a ways off in getting the two nurses off our case.

Interestingly, according to our account rep at the agency, the nurses that we currently have, are the best and only pediatric nurses that they have. Since they are the only pediatric nurses they have, then it's much easier to believe that they are their best.

On a positive note, we do have a great nurse temporarily assigned to us this weekend, and she will be working with Sadbh on both Saturday and Sunday nights. Our hope is that we will be able to have her reassigned to our case full time.

We brought Sadbh for a walk up to Madrona for pizza and it seems that she is getting used to dining out. Madrona is a lovely neighbor hood, not far from where we live, with a few little family friendly restaurants to choose from. 

I'm not sure if I was overly sensitive or not, but I seemed to notice a few gawkers. One restaurant we walked by, a guy in the window was blatantly pointing out to his family, Sadbh's equipment. Later we passed the same guy on the street and I overheard him say to his kids, "there's that baby again". 

There were quiet a few rubber necks in the pizzeria also, but at the end of the day, I can't let this annoy me as my focus and energy needs to be on Sadbh alone.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626990102408/

Photos from April 17th: http://www.flickr.com/photos/langer-dan/sets/72157626521933464/

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 66

Sadbh had an appointment with a Osteopathic Physician today so we could explore alternative therapies to assist in resolving her condition.

Cranial sacral therapy has been high on our list for quite some time, but we wanted to make sure we were home and somewhat settled in before trying it out.

Today's appointment went very well. Dr. Cavanaugh was able to work with Sadbh and identified areas around her body that required adjustment. He noticed that her rib cage was set a lot higher than it should have been, and determined that it was caused as a result of her difficulty in breathing and possibly caused by her muscles working overtime to expand her lungs. 

He also worked on the area at the base of her skull and hopes that this adjustment should hopefully reduce pressure in that area.

It's not certain that any of this will resolve Sadbh's condition, however it's worth trying out and we have a follow up appointment next week.

Information on cranial sacral therapy can be found on the following site: http://seattledo.com/cranial-osteopathy/

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626980207112/

Photos from April 16th: http://www.flickr.com/photos/langer-dan/sets/72157626512894834/

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 65

Today was a mixed bag of emotions.

The ongoing issue with the nurse situation is causing us serious frustration. The agency is working to accommodate our needs, however it is taking forever and in the meantime we are still stuck with the same couple of nurses. It's very possible that we will not have replacement nurses for at least a couple of weeks.

On the other hand, Sadbh was in great form today. She was full of big smiles and laughs all day. We figured that we would take advantage of her sunny disposition and decided to take her out to Cafe Presse for her second dining experience. 

This was such a better experience than the last venture, she was very content and when the food arrived, she simply fell asleep. 

Needless to say, a good time was had by all.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626848787101/

Photos from April 15th (Sadbh's tanning bed): http://www.flickr.com/photos/langer-dan/sets/72157626503909248/

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 64

Sadbh had an appointment with Robin, the Occupational/Physical therapist, at Children's hospital today. 

Robin was impressed with the changes in Sadbh in the last couple of weeks and Sadbh did a great job in showing how good she was at pooping, eating, burping, tummy time and all that good stuff.

Katie and I learned a very valuable lesson today, don't put off taking care of trach care until late in the day. By doing so, Sadbh was extremely fussy and it ended up taking a lot longer than usual and causing all three of us more stress than we needed. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626841456219/

Have a good evening,

Wayne, Katie and Sadbh.

Sadbh's update - day 63

Sadbh had a follow up appointment with her pediatrician today to get her immunization shots. To be honest, we are not big fans of immunizations, however considering her circumstance, we felt it would be best to give her whatever is needed to keep her immune system as strong as possible.

She had a total of 3 shots and one by mouth, thankfully one of the shots was a cocktail that included 4 different vaccinations. As you can imagine, she was a little cranky, however she back to her pleasant little self within a minute.

Katie was extremely impressed with Dr. Bowe's nurse, Marie. While Katie was distracting Sadbh in anticipation of the shots, nurse Marie administered all three shots within the blink of an eye, and upon completion she said to Sadbh, "viola! ma cherie". 

Dr. Bowe was quite impressed with Sadbh's development. She's gaining weight at a good rate, 10 ounces in 9 days, for a total weight of 9 pounds 12 ounces. She also grew another 6 inches for a total of 21.5 inches. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626957891748/

Photos on April 13th: http://www.flickr.com/photos/langer-dan/sets/72157626373178137/

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 62

What a hectic day. It's funny how much free time we used to have to do things and go places and so on, before Sadbh came along. And now that she's here, it is quite the opposite. I'm not complaining in the slightest, but it is interesting how this little person, without realizing, commands and receives all the attention she needs.

Sadbh, generally had a very relaxed and easy day today with a lot of feeding and sleeping. There were a few fussy moments, but all in all, she had a good day.

We were hoping to join Suzie for her baby shower today, however Sadbh decided to throw up all her lunch, so we ended up having to change out her trach ties which delayed us by a couple of hours. Sorry Suzie!

We have been trying to make up for the lack of "tummy time" and the likes while she was in hospital, however she seems to have very strong arm and neck muscles and can hold herself up for a few minutes without any difficulty. Like I said before, she's one tough cookie!

I managed to get some serious snuggle time in with Sadbh today while Katie was able to head out and take care of a few errands. Both of us ended up so wiped out, that we fell asleep in the rocking chair for almost two hours. 

During a couple of her episodes today, while she was extremely upset, she made a slight crying sound. We are not sure if this sound came from her trach or her mouth, but we have a feeling it might have been from her mouth. Each time this happened, we suctioned her trach and it appeared to be clear of any secretions. 

Last night I placed a little mirror under her nose and also in front of her mouth, and noticed condensation when she exhaled. Air should always flow the path of least resistance, and with a trach, the air should flow through that, and not her mouth or nose. We made sure that her trach was clear of secretions, removing the possibility of blockage causing the air to be diverted through her mouth or nose. 

It's possible that these two discoveries don't really amount to much, but you never know. 

We are anticipating a return of Princess Angry Bird tomorrow, especially in the early afternoon when Sadbh has an appointment with her pediatrician for her immunization shots.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626824655025/

Photos from April 12th: http://www.flickr.com/photos/langer-dan/sets/72157626359974205/

Transport to Children's: http://www.flickr.com/photos/langer-dan/sets/72157626489980684/

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 61

Saturday was quite a good day.

Since Sadbh has been our main focus for the past couple of months, both Katie and I have a lot of chores and errands to take care of. Sadbh was in great form for most of the day, and with the help of Katie's mom, we were able to accomplish a lot. We are so fortunate to have Ali-Baba so close and willing to help out when needed, thank you so much Ali-Baba!!

Another colleague suggested on Friday that I should try getting my face up close to Sadbh, within a foot or so, and making facial gestures to see if she would start to copy these gestures. 

I tried this out on Friday evening, by sticking my tongue out, and immediately received at least 10 smiles. Yesterday, after receiving a few initial smiles, she did start to stick her tongue out. 

Today's goal is to teach her how to use the toilet. 

Since today went so well, we figured that we would take Sadbh out for her first restaurant experience. We decided to meet a few friends at McGilvra's bar and restaurant in Madison Park since it's close to home, and it's children friendly. 

All went well, until the food arrived, and apparently, so did Princess Angry Bird. After many failed attempts to console her, we threw in the towel, paid our bill and made a hasty retreat for the door. 

It was a good first attempt, and we learned a few things for the next time we go out. I'm sure that she will grow accustomed to dining out very soon.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626943742502/

Enjoy the rest of your weekend,

Wayne, Katie and Sadbh.

Sadbh's update - day 60

On Thursday evening, while carrying out our daily trach tie cleaning routine, we had a couple of scares.

The first one I noticed when preparing to remove the felt trach ties. Apparently I had trimmed the Poly-Mem liner, that is placed around the trach, too short. Poly-Mem is used to soak up secretions and to also protect her skin around the trach.

What I discovered was since the Poly-Mem was a little too short, her skin was blistered directly under the eyelet in the trach, where the felt tie is inserted. 

The second scare was when we were cleaning the area all around the stoma (the hole in her neck). We noticed a little blood on one side, and as we got that cleaned up, there was a lot more on the other side. We quickly cleaned everything and searched the entire area for the source while we mentally prepared ourselves for a long evening back at Children's. However everything looked great and after further checking, we think it might have been a result of a tiny cut that Katie had on her finger.

I honestly have to say, the stress wiped both of us out that evening.

I'm sure that this is only one of many little panic attacks that we are going to encounter as long as Sadbh has a trach.

Our trach cleaning went a lot better this evening, and the blister appeared to have dissipated. We will keep an eye on it for the next few days to make sure that everything heals nicely.

Nothing good to report on the nurse front today. The agency is scrambling to move nurses around from other assignments so they can replace a couple of our existing ones, and they are hopeful that they will have this resolved sometime next week.

It's been a particularly grueling week, especially for Katie. The stress of our nursing issue, the fussiness of Princess Angry Bird, the constant feedings and lack of sleep have left Katie frazzled and exhausted. Some of these experiences are very common with all new borns, however I feel there is a slightly heightened level of stress as we try to determine if Sadbh's fussiness is caused by an issue with her trach, or simply just the normal things that upset babies.

I received some excellent parental advise and mentoring from a friend at work today. She referenced a comment I made on Wednesday regarding how Sadbh's sleeping pattern is gone completely off schedule. Unbeknownst to me, babies don't typically have a schedule, and as soon as a parent feels they have a regular routine figured out, the baby will always prove them wrong. 

I am not entirely disappointed in this revelation, but I am encouraged now that my expectations have been readjusted.

So Sadbh got her first taste of Indian cuisine tonight, or she will the next time she feeds from mommy. Our good friends Sean and Megan came by to meet Sadbh and brought some delicious Indian food. It was great hanging out and Sadbh was very happy to fall asleep in Megan's arms. Thank you!!

I took so many great photos of Sadbh during her bath time, and with mommy and even a few with Megan, however I was disappointed to discover that I had forgotten to insert the memory card in my camera, so none of the photos were saved.

I suppose, it's better to happen now than at her graduation or her wedding. 

New Photos: http://www.flickr.com/photos/langer-dan/sets/72157626935912808/

Photos from April 10 (the day she was born!): http://www.flickr.com/photos/langer-dan/sets/72157626358871197/

Have a great day, all the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 59

Katie contacted a number of nursing agencies this morning and provided them with the contact information for our primary insurance company. Shortly afterwards, she received word that our existing nursing agency was the preferred agency and we could not use any other company. 

After further research, we discovered that the only way we could use another agency was if we lived 30 miles or more away from the existing agency. 

This news has left us feeling deflated and frustrated, however we are determined now more than ever to keep the pressure on our existing company to get the nursing care that Sadbh requires.

Sadbh got to meet a dear friend of Katie's father today. Ian happened to be in town for an appointment and we were delighted that he got a chance to stop by to meet our precious baby.

Today's photos: http://www.flickr.com/photos/langer-dan/sets/72157626927259486/

Photos from May 9th: http://www.flickr.com/photos/langer-dan/sets/72157626687737764/

Take care for now,

Wayne, Katie and Sadbh.

Sadbh's update - day 58

After playing phone tag for a couple of days with our insurance company, Katie finally got to chat with our ex-case manager, and we have received the green light to kick start conversations with additional nursing agencies. 

Our first task is to get each of the agencies to negotiate rates and contracts with the insurance company directly, and then we can start interviewing individual nurses to see who is qualified and compatible. It might take a while to get our nursing issue resolved, at least this is a step in the right direction. 

Princess Angry Bird was very fussy again today. Her feeding and sleeping pattern is gone completely off schedule, so we have to make a very strong effort to get that back on track. It's heart breaking to see her in such distress, but it's comforting to know it's only gas, and it's nothing compared with what she's already been through.

I hope it's not the new view that she has from her room. I honestly feel that her new view is much better than the old one.

Typically Sadbh is comforted by either her soother, or her mommy's boob. Today, despite all her fuzziness,  she found her hand, and it seemed to calm her right down. 

Today's photos: http://www.flickr.com/photos/langer-dan/sets/72157626920219618/

Photos from May 8th: http://www.flickr.com/photos/langer-dan/sets/72157626554518287/with/5702267088/

Take care,

Wayne, Katie and Princess Angry Bird.

Sadbh's update - day 57

We had a long, candid conference call with the nursing agency account rep this evening and he is scrambling to resolve the issue. I'm still shocked at the fact that we seem to have professional baby sitters and not qualified nurses as required. More to come on this over the next few days.

Another record was broken today. Katie and I changed out Sadbh's trach tie and cleaned her neck in 12 minutes flat. Again, the secret is in getting her as comfortable as possible and bundled up very tight. 

I'm thinking that Sadbh is experiencing some serious tummy and gas pain and was extremely cranky all day. So much so, Katie gave her a new nickname "Angry Bird". Hopefully her pain and nickname will be very short lived.

Aunty Lydia stopped by for a visit, and Sadbh melted in her arms. She is a natural when it comes to kids. Thanks Lydia!!

Katie clicked on an older batch of photos today and was amazed by the change in Sadbh in just one month.

Talk a look at Sadbh on May 7th, two days before she received the tracheostomy:  http://www.flickr.com/photos/langer-dan/sets/72157626550137983/

Now, take a look at her today: http://www.flickr.com/photos/langer-dan/sets/72157626912661034/

What a difference. It is incredible that it only seems like yesterday that she was intubated and on a ventilator. I can't believe how far she's come in just one month. 

Take care,

Wayne, Katie and Sadbh.

Sadbh's update - day 56

First thing this morning, Katie was on the phone to the nursing agency rep to figure out how we can get our nursing issue resolved. There appears to be a shortage of qualified nurses out there, so we might have to wait until they can recruit more. We figured it would be fair to give them a couple of days before we start looking at different agencies. 

The nurse that worked on Friday night is back on shift tonight, and we just had a chat to discuss what happened over the weekend. In an effort not to cause offense or point the finger, we had to be tactful and explain what steps need to be taken going forward. 

Fingers crossed that we figure out the nurse issue tomorrow.

Sadbh had a fairly decent day today. She has been a little bit cranky the past few hours, but we think that's a result of an upset tummy. 

Both Katie and I are getting the whole trach tie cleaning routine down. A big part of it is managing to keep Sadbh calm and we think the best way to achieve that is to feed her first, then give her a bath, and once dry, swaddle her like a burrito. Mission accomplished today, and we were able to get take care of the trach tie cleaning in 30 minutes, which is a new record for us. 

I brought Sadbh for another tour of the house this evening and she was fascinated by the ceiling fans that we have throughout the house. It's great to see her eyes light up when she sees something that peaks her interest. 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626904862898/

All the best,

Wayne, Katie and Sadbh.

Sadbh's update - day 55 - 8 weeks today!

Sadbh's nurse last night was quite different to all the nurses so far. She recently left Swedish hospital so she could go back to college, and it seems that she is extremely experienced.

Straight off the bat, she took Sadbh's vitals, the old fashioned way and was also quick to check all the equipment. She wasn't happy with the compressor that Katie had adjusted earlier on, and contacted the rental equipment company to have a service technician come take care of it. In fact, she gave the equipment company a run for their money, they had to come out to the house twice throughout the night. Once to replace the compressor, and a second time to bring some extra supplies.

She is taking care of Sadbh again tonight, and we are hoping to get her on the roster more frequently.

Sadbh ended up having quite the busy social day today. First she got to meet some of our great neighbors and later she was invited to a BBQ in West Seattle, where she met a bunch of our close friends. Thanks Theresa and Orla! 

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626896400996/

All the best for now,

Wayne, Katie and Sadbh.

Sadbh's update - day 54

Saturday was quite stressful. 

I got up at 6am to take over from the night nurse. She reported that Sadbh had a quiet night and slept the whole time. She did mention that she felt that the Oximeter was not picking up the correct readings. Our particular oximeter not only measures the oxygen saturation levels in the blood stream, it also measures the heart rate. According to the oximeter, Sadbh's heart rate was quiet high all night. Typically when Sadbh sleeps, her heart rate is anywhere between 120 and 140, during the night she was sleeping with a heart rate over 165. Our nurse was determined that the oximeter was picking up an incorrect reading and that there was nothing to be worried about. She recommended that we contact the equipment rental company and get a replacement or have this unit re-calibrated. 

Shortly after the night nurse left, we realized that the airway in Sadbh's trach appeared to be a lot more congested than normal. We figured that a quick suction would do the trick, however she still seemed to be working harder than usual to breathe. We tried adding drops of saline into her trach to loosen up her secretions, and when we used the suction catheter it sucked out some thick mucus. Unfortunately it wasn't enough as she was wheezing when she took a breath. 

Katie suspected that the trach collar wasn't pumping out enough moisture and decided to call the equipment hotline. Sure enough, the settings on the compressor were a lot lower than where they were supposed to be, and it seems that these settings were off for the past couple of days. 

Since the level of moisture being administered to Sadbh's trach was a lot lower than it should have been, we figured that this resulted in her airway drying out causing her to have to breathe harder. Hence the high heart rate. 

Using sterile Q-tips, we carefully cleared out the area of the trach that was easily accessible. By adding more drops of saline into the trach, we were able to remove more dry secretions allowing her airway to open up more. As I write this, she is still slightly wheezy, but she is improving.

What annoys me, it that this could have all been prevented very early. Rather than thinking that the oximeter wasn't functioning properly, and that her heart rate was fine, why not check all the equipment to see if there were any other causes. When you think of it, Katie is not a medical expert, however after looking over all the possible scenarios, she figured it out. My confidence in our nurses now has dwindled dramatically and it's going to be hard to sleep knowing that our baby is in their care.

I try to be as optimistic as possible when I write these daily blogs, but the truth is that our experience since Sadbh was born has been really difficult to deal with. Both Katie and I are emotionally wrecked and our stress levels are through the roof. We often find moments of solace in how beautiful, strong and wonderful Sadbh is, and also from the kind e-mails that people send. But often, and I am ashamed to say this, we also find resentment as we know that our lives should not be like this. We love our little girl so much, and we are dedicated to to her recovery. But this sucks and it's going to be a long time before it will get any better.

That's all for now, take care,

Wayne, Katie and Sadbh.

New photos: http://www.flickr.com/photos/langer-dan/sets/72157626763157943/