Home Again (The Encore Presentation)

Emma was finally discharged this evening (Yay!!!)

Today's study showed that Emma did not aspirate when she feeds (Double Yay!!!) although on two occasions (after she had been drinking for a while and was getting tired), some fluid almost entered her larynx. The occupational therapist therefore suggested that Emma could benefit from thickened feeds, so we will now add a special powder to her milk in order to make it the consistency of nectar or tomato juice. This should allow her to swallow it more easily and reduce the risk of aspiration. It will also help with the reflux. Once her NG tube was removed and she had successfully taken a thickened feed (a test Emma passed with flying colours), we were allowed to leave (Emma also hadn't needed any oxygen since Monday morning, so the 24-hour-without-O2 criterion was also met). We have to go back next week for the second swallow test to assess the reflux situation, but at least that can be done on an out-patient basis.

So, for your viewing pleasure, here are a couple of pics of Emma expressing her happiness at being home again :)

9:00 a.m. Tuesday

...is when Emma is scheduled to have the swallow study test. The team met today and decided that Emma should have 2 separate studies, one to see if she is aspirating when she swallows (tomorrows test), and another to see if she is refluxing after she feeds. Unfortunately, the two tests can't be done at the same time, so we'll have to wait another 5 days to have the 2nd test.

To clarify a bit, the docs aren't convinced that Emma is aspirating when she swallows. While she is at a higher risk of aspirating (given that her left vocal cord is paralyzed in an "open" position) she hasn't shown the "classic" symptoms, doesn't choke when she feeds, and hasn't had problems protecting her airway. Nevertheless, the team wants to have the swallow study done to completely rule this out as a potential contributor to her respiratory distress.

The docs believe that reflux is the main problem. They think that Emma might have always had some reflux, but the combination of her age (reflux seems to 'develop' in babies between 1-4 months of age and Emma is now 9 weeks, corrected age), her recent respiratory infection, and the fact that she is now taking greater amounts of milk at each feed have conspired to cause her current difficulties. Reflux is a common gastrointestinal problem in premature babies. It occurs when the stomach acid and partially digested food flow back up through the lower esophageal sphincter into the esophagus. All children and adults will naturally reflux throughout the day, especially after eating. However, if the muscle opens too frequently and refluxing occurs too often, complications can develop.

Premature infants have an increased risk of developing reflux. There are several medical conditions that can cause reflux, but in preterm infants, the most common causes are immature muscles and abnormal breathing from chronic lung disease. If the lower esophageal sphincter is weak or underdeveloped, it can remain open when it should be closed, letting the stomach contents flow back up the esophagus. When a baby breathes abnormally because of chronic lung disease, the muscles used for breathing work harder. As these muscles work hard to breathe, they can pull on the muscles near the top of the stomach, stretching the sphincter and causing it to remain open. When the stomach contents flow inappropriately up into the esophagus they bring acid from the stomach. As the acid irritates the tissue inside the esophagus, it becomes inflamed and reddened (which the scope last week indicated). If the reflux is severe, the stomach contents may go high enough into the esophagus to be aspirated or spilled into the lungs causing choking, color changes, frequent respiratory infections, apnea (breathing slows or stops) and/or bradycardia (slowed heart rate). So, Emma will have another test in 5 or 6 days to assess the reflux situation. In the meantime, she'll continue on the reflux meds. If the study tomorrow shows no (or very minimal) feeding aspiration, she should be able to go come home later this week, as long as she no longer needs supplemental oxygen. As of now, Emma has not needed any oxygen for 14 hours. She has to go at least 24 hours without O2 in order to go home, so she's well on her way :)

Still Nothing New to Report

Emma has had a quiet weekend, after keeping Eric up most of the night/early morning on Saturday. Since then, she's been much more settled. She's still getting a whiff of oxygen (we tried taking her off a few times over the weekend, but she desated again rather quickly, so she's obviously not quite ready to give up the nasal prongs). She's getting all of her feeds via the NG tube, but seems to have adjusted to it, as she's no longer trying to pull it out. She's been charming the nurses and docs with her quick smiles and sunny good humour :)

We hope that Emma will be able to have the Swallowing Study tomorrow or the next day. In this study, she'll be fed a bottle of milk that contains an added radioactive substance which can be visualized on xray. A computerized scan of her abdomen can then show whether or not milk is entering into her airway or is being aspirated into her lungs. The study will also show the presence or degree of gastroesophageal reflux (though the docs have already started her on medication for reflux). If the results show she is aspirating, Emma may need to have an NG tube in place for several months. Hopefully we'll have more answers soon...

Blogging from CHEO

By the way, if anyone else has the misfortune of having to spend a lot of time at CHEO, the hospital has free public WiFi.

Sleep? Oh, yeah, that.

After a short sleep, we got not only a wired baby, but also one that became angry with dad because he wouldn't give her a bottle. Real angry. Angry as in spit out the soother, look at daddy, and scream at the top of our lungs while turning bright red angry...on and off for a few hours. I'm sure that by now Emma figures dad is retarded for not responding to the customary "I want my bottle" cues.

Now before anyone gets worried, she is being fed, but she's on a continuous feed of 28 ml per hour. She's getting the same volume, but it's spread out evenly throughout the day, as opposed to a meal ever 3 or 4 hours. While this will hopefully help the reflux, it also means that she doesn't get the full belly feeling that she's used to (and probably helps her get to sleep).

Little Emma had a tough night, but she finally tired herself out and now that it's morning, she's having a good sound sleep.

We also have the misfortune of having the worst pulse oximeter imaginable in this room. The slightest motion causes it to alarm instantly. The sad thing is that it's not an old first generation unit -- it's clearly microprocessor-based with an impressive looking screen and scads of configuration options. I'd love to have the software development team for this product spend 24 hours in a room with a baby connected to their abysmal product. Johnson and Johnson should stick to shampoo...

...or perhaps they should sell their product to the US Military. I can see suspected terrorists voluntarily standing in line to spill their guts rather than spend another night in a room with a baby connected to one of these pieces of junk.

Asleep at last...

Emma had a tough day, and it has been hard to tell if she's restless due to respiratory issues or the NG tube combined with the improvised gloves to prevent her from removing the said tube.

We didn't want to give her a mask of epi and end up with a wired baby, but by 2:15 am she seemed to be working harder to breathe and the nurse agreed that it was time.

10 minutes after finishing the mask, you'd expect a wide-eyed Emma, like every other time. Nope, sound asleep. I, on the other hand, having held her on my lap and thereby inhaled some of the same...

Did I ever mention how much TV sucks at 3am?

Todays Test Results

The docs were finally able to 'scope' Emma late this afternoon. Our baby was a real trouper, and despite a very unpleasant exam., she was smiling again a few minutes later. The results show that she does have a paralyzed vocal cord, something we had already suspected (given her hoarse and quiet cry). This is most likely the result of the surgery she had at age 2.5 weeks to repair her PDA (see posts from late-August). The docs are simply going to follow her for this, because in some cases the paralysis may resolve on its own. Even if one of her cords remains permanently paralyzed, it should not affect her breathing, but rather the sound of her voice. The doc said that a third of children with unilateral vocal cord paralysis have "weak/breathy" voices, another third have "hoarse/wheezy" voices, and the remaining third have virtually normal-sounding voices. We simply won't know about Emma's voice for some time yet.

The scope procedure also revealed some inflammation, indicating that she may have reflux as well. To further investigate this, Emma will have a swallow study test next week to see if she is aspirating or refluxing when she feeds. Given that she is at increased risk for aspiration (due to the vocal cord paralysis), she's won't be able to feed by bottle/breast until she has the test and she now has an NG tube again (she will be fed through a small, flexible tube that is inserted through her nose and goes directly into her stomach -- she had one for months while in the NICU). She's also been started on medication for reflux, so hopefully that will help some too. Eric is staying at the hospital with Emma tonight and reports that she is not settling well and is trying to pull the tube out. Poor Boo :(

Finally, the team is trying to wean Emma off oxygen, but so far, she hasn't been able to maintain her sats without the supplemental O2. So, it looks like she'll be in hospital for at least 4 or 5 more days.

Thursday morning at CHEO

Emma's doing about the same, she is not able to maintain her oxygen levels without some help and she's congested, which is delaying the scope procedure.

Nothing New to Report

Emma had a pretty good day. She actually slept for most of it. I guess the extra effort she's been putting into breathing is tuckering her out. She was able to come off oxygen for a couple of hours this afternoon, but is now back on again. Her chest xray did show a few areas of lung inflammation, in keeping with viral bronchiolitis. For now, we're just waiting for her to improve enough for the ENT doc to do the scope procedure. Hopefully it will be done tomorrow. Depending on the results of that exam., the team may start therapy for reflux. Still no discharge date in sight...

Pic from CHEO

Are We Having Fun Yet?

Not so much.

Emma has been to CHEO 4 times in the last 2 weeks. It is frightening how quickly her condition deteriorates. Last night, Emma was fine (with O2 sats. above 95%) at 11:00 p.m.., but 3 hours later she was in respiratory distress. Seeing her struggling to breathe is very difficult. It quickly brings back memories of all the scary early days in the NICU. The back-and-forth between home and hospital is also draining, emotionally and physically, for all of us.

Thankfully, as of this evening, Emma is doing well. She's still on oxygen and is receiving nebulized racemic epinepherine treatments every 3 hours which seem to help her breathe more easily. The team was a bit concerned she may be developing a bacterial pneumonia, but she hasn't had a fever and her chest xray looked OK (though we still haven't heard from the radiologist who was to review it yet). For now, the docs aren't sure why Emma has been having these ups and downs. As Eric said, they're wondering if she might have reflux and may be aspirating very small amounts of milk into her lungs after her feeds, resulting in the respiratory distress. The ENT specialist came in to see her this afternoon, but doesn't want to perform the 'scope' for a couple of days (hoping that she will then be less congested and the procedure will be easier on her). We should know more then. So, it looks like we'll probably be at CHEO at least 'til the end of the week...

Hangin' at CHEO

Emma's stable at CHEO on low flow oxygen. A chest xray didn't reveal anything remarkable, and while the leading suspect is still a nasty virus, the rapid onset of symptoms two nights in a row has the medical team considering other potential causes such as reflux. They plan to scope her tomorrow and have a peek. (That's a nice way of saying that they'll stick a camera up her nose and down her throat.)

Spoke too soon...again...

Took Emma to CHEO at 4am. She's been admitted...again...

99 beats 67

One of the theories the doc had last night is that mucous may have temporarily blocked or restricted air flow in Emma's lungs. Apparently these mucous plugs are quite common and cause some kids to get worse and then quickly better again. Since Emma already has lung problems (BPD), even a small reduction in her effective lung capacity can cause distress. It's possible that the bronchodialative effect of epi helped loosen things up, or perhaps just the fact that I postponed a two-day business trip did the trick :)

In any event, Emma is stable and if her smiles are any indicator, she's feeling much better. Hopefully we'll avoid a repeat performance of last night.



For anyone who's wondering, Emma is posing with her Masimo pulse oximeter in a fashionable orange protective boot. The bottom number (158) is her heart rate. The top number (99) is her oxygen saturation (in percent). We like 99.

CHEO, yet again...

Emma started having difficulting maintaining her oxygen saturation levels again Sunday afternoon, especially when asleep. Ventolin provided some relief, but it was too short lived and I ended up taking her to CHEO's emergency department.

She wasn't as bad as last Friday, and she was relatively stable, so I didn't put her on oxygen for the short trip to CHEO. (Emma is not routinely on oxygen, but I do have a kit for emergencies.) Apparently our trip wasn't exciting enough for Emma, and about 4 minutes after leaving home her sats hit a low of 67% as I pulled over and put her on oxygen...lots of it.

At CHEO a mask of racemic epinephrine did the trick, and a few hours later we were on the way home. So here it is, 2:30am, and Emma is sleeping like a baby and doing just fine. I, on the other hand, expect to be up another hour or two and then Laurie will take over.

Kudos to the CHEO emerg staff for great and fast care.

Sisters

Although Michaela is not always eager to share our attention with her new sister, even she was happy to have Emma home today :) She eagerly offered to use her "special soap" (aka Purell) so she could hold her:

Home Again, Home Again....

After 5 days in CHEO, Emma was finally discharged late this morning. She didn't need any supplemental oxygen last night, so the docs deemed her "good to go." She still has some nasal & chest congestion, but otherwise seems to be doing well... We'll watch her closely and if she has any trouble maintaining her sats., we'll bring her back, but hopefully that won't happen and she's home to stay.

While in hospital, we were able to get a consult with the ENT specialists (better than being on the months-long waiting list we were told to expect!) to check out the possibility of Emma having vocal cord damage. Unfortunately, due to her congestion, the docs weren't able to see her vocal cords during the scoping procedure today, so we'll have to go back to CHEO and they'll try again next week.

In other good news, we had another appointment with the ophthalmologist today and Emma's eyes now seem "perfect" There's no longer any evidence of R.O.P.!!! We'll be having regular follow-up appointments at CHEO to monitor her eyes (because Emma may be prone to other vision problems as a result of her extreme prematurity), but for now the news is very, very good!

Thanks for all your good wishes while Emma was in hospital. As always, they were very much appreciated!

Discharged!

Story at 11.

Another day?

Emma's been off oxygen and on again, so she'll spend at least one more night at CHEO.

Virus update

Emma is doing fine. She still requires a small amount of supplemental oxygen (about 0.5 l/min) to help her along, and she has a bit of a cough, but her lungs sound much better than they did on Friday and she's not in any distress. She has tested negative for RSV again. At this point everything seems to point to a virus causing bronchiolitis and that will just have to run its course.



All things considered, this is all relatively minor considering what Emma has been through. She probably has the type of cold that would make any of us feel under the weather for a week or two. With the lung issues she has by virtue of being a 24-weeker, she doesn't have much reserve capacity, and the bronchiolitis is just stressing her system a bit too much.

For anyone who hasn't experienced CHEO's emergency department, the staff there are fantastic. We were seen immediately upon arrival (i.e. zero wait) and there was no shortage of volunteers to hold Emma when I needed to use the washroom or the vending machine.

...and on again...

Looks like we're not quite there yet...

Off Oxygen

Good news, Emma is off oxygen and maintaining her oxygen satuatiion levels..

Spoke too Soon

So much can change in a few hours... Emma started having difficulty breathing about midnight. Off to CHEO emergency again. She was given 2 doses of epi. but was still having difficulty maintaining her sats. without supplemental oxygen. She's been re-admitted to hospital and is still on O2. Even though she tested negative for RSV earlier in the week, the docs are running more tests again... Eric just came home (he was at the hospital with Emma for 12 hours) and I'm off to CHEO now. I'll update more later.

Doing Well

.... just a quick update to report that Emma is doing well, 'though she's still congested and has a rather hoarse cough. We're not sure if the 'hoarseness' is related to her prolonged early ventilation (preemies who were on ventilators for many weeks sometimes have hoarse voices), or if she does in fact have some vocal cord/nerve damage attributable to her early surgery (for PDA ligation). Emma has been referred to an Ear, Nose and Throat specialist at CHEO for further investigations, but we've been told we may have to wait many months for the appointment.

Thanks to everyone for their offers of help. It was a crazy, busy week, but Eric is now home, Emma is doing better, and everything is back under control. I'll keep all your kind offers in mind for the future, though :)

By the way, we had our last appointment with the lactation consultant at the SCN this week. Emma has "graduated" and now tips the scales at 8-and-a-half pounds!!!!

Back at Home

I'm very happy to say that Emma is back at home tonight. She was taken off supplemental oxygen this morning and remained stable all day, so the docs decided she could go home tonight. Yay!! She still has a stuffy nose and a cough, but she seems none the worse for wear :)





We'll go and see her pediatrician later in the week and will watch her closely, but the docs think the worst is over. They were pleased with how she's doing today and felt that her immune system was strong as her condition didn't worsen over the past 2 days. She's sleeping peacefully now, so I'm gonna try and get some rest too. Yesterday was very scary and it served to remind me of just how fragile Emma still is...

Back in Hospital

In spite of our best efforts to keep germs at bay with near-fanatical hand-washing and copious amounts of Purell, Emma came down with cold late last week (Michaela, Eric and I have all been sick with colds over the holidays). Her very stuffy nose was soon followed by a nasty barking cough. Saturday night she started "desating" - having periods of low oxygenation - (we're still monitoring her heart rate and blood oxygen levels), and by Sunday she was even more congested and was not feeding well.

I brought Emma to the emergency department at CHEO early this a.m. and she was assessed by the triage team within minutes of our arrival (no waiting when you are a micropreemie, I guess). Given her condition, her chronic lung problems (bronchopulmonary dysplasia), and the fact that she was an extreme preemie, they decided not to take any chances and admitted her (mostly for observation). Thankfully, test results have come back negative for Respiratory syncytial virus [see http://www.rsvinfo.com/ and http://www.rsvprotection.com/ for more information on RSV] so that is a huge relief. At this point, the tentative diagnosis is viral bronchiolotis (apparently CHEO has had several babies admitted with it this winter).

By this evening, Emma was breathing a bit easier. She's been put on low-flow oxygen and seems to be less congested. The docs will reassess her condition tomorrow morning. As luck would have it, Eric is out-of-town on a business trip this week, so I wasn't able to stay in the hospital overnight with Emma (as Michaela is at home). It was incredibly hard leaving her there tonight. Hopefully her stay in hospital will be very short. I'll update more tomorrow.

Nasty cold

Emma's cold has turned a bit nasty. She's not in any immediate danger, but she's at CHEO for observation (24-48 hours). Unfortunately I'm out of town on business for a few days, so Laurie has her hands full right now.