Eight Weeks Old

Emma celebrated her 8-week birthday by have a quiet, restful day. She was off CPAP (breathing on her own) for 4 hours this afternoon! She's doing better on the nasal canula than anyone anticipated given her BPD (bronchopulmonary dysplasia - damage to her lungs and the airways in the lungs as a result of being on a respirator for a lengthy period of time). The team will gradually increase the time that she spends on nasal prongs each day... the respiratory tech mentioned today that Emma will likely be on canula all day (and CPAP at night) by the end of next week.

Emma will have another xray of her tummy tomorrow morning... If things continue to look good, her antibiotics will be discontinued and she'll be started back on milk by mid-day.

Emma: The Wild Woman

First it was "the Diva." Now, it's "the Wild Woman." This is what Emma's nurses are affectionately calling her. As I said yesterday, since she's been feeling better, Emma has been much more active. She managed to pull her NG tube out today and her ET tube became quite loose again from all of her wriggling around (despite retaping it twice more), so the docs decided it was time to remove the tube entirely (the chest xray showed that the tube was no longer placed correctly and they didn't want to put her through the proceduce to insert another one). Rather than putting her directly onto CPAP, the docs decided to "test" Emma on a nasal canula. To everyone's surprise, she was able to breathe on her own for 2 hours before getting tired!!


It's not the most flattering picture (it's hard to take photos through the plastic sides of the incubator), and her nose is still a bit puffy, but at least it shows Emma's face without tape on it...

She's back on CPAP now but, if she remains stable, the team will start gradually weaning her off by putting her on the nasal prongs for an hour a couple of times each day. Unlike the CPAP, which forces a stream of air into her nose, the canula only provides a regular flow of oxygen-enriched air. This requires Emma to be motivated to inhale on her own. Breathing is therefore harder work, and Emma will likely get tired pretty quickly. She was paler than usual after being on the canula this afternoon, so the docs will monitor this carefully. They've also ordered another xray of her abdomen tomorrow (today's xray was better than the previous ones have been) to monitor her recovery from NEC. If she continues to improve, they will likely restart her feeds on the weekend.

Extubated!

Emma was extubated earlier today and cruised along with just a nasal cannula for about two hours. They're currently in the process of putting her on CPAP before she gets too exhausted. She's still on antibiotics and it'll be another few days before they start feeds again, but she's definitely moving in the right direction!

Our Fiesty Girl is Back

After spending the last few days sleeping and recuperating, Emma is clearly feeling much better today! As her nurse said this afternoon, "our fiesty little girl is back" :)

Emma was much more active and alert today. She was squirming around her isolette and just about pulled her NG tube out. She seems to be hungry (a good sign!) and has been giving her pacifier a good work out. The respiratory techs had to retape her endotracheal tube twice today as Emma has been moving so much and pulling on it, it has become loose. She's on the lowest possible settings of the ventilator (10 bpm at 21% oxygen), so she's ready to be extubated very soon (the docs wanted to give her stomach another day to heal, so decided not to put her back on CPAP yet). She's scheduled to have xrays of her chest and abdomen tomorrow... here's hoping the results will be good!

Finally, some improvement

Emma is doing much better today. From a respiration point of view, she's very stable... cruising along on room air (21% oxygen) with very few desaturations. They've turned down her ventilation rate to 15 and she will likely be able to go back on CPAP tomorrow or the next day.

In terms of the NEC, Emma still has a lot of air/old blood in her belly, but the docs don't seem to be as concerned now. They haven't ordered another xray (as Emma is clinically doing better) and are simply giving her stomach time to heal on its own (continuing with the antibiotics and IV fluids and withholding her feeds).

As Emma was much improved today, we were able to resume Kangaroo care. Not being able to hold her since last Friday has been really hard...

Not Much Change

That pretty much sums up today.

The good news is that Emma's condition is not any worse than it was over the weekend. While the results of her blood tests came back negative (indicating she does not have a blood infection), the docs have decided to keep Emma on antibiotics for another 5 days because she is still showing signs of being sick. They'll withhold her feeds for another 5-7 days to give her gastrointestinal system a break (she'll receive IV fluids/nutrients instead). Being back on the ventilator will also reduce the amount of air in her tummy, helping it to heal even more. The CPAP blows a constant stream of air into Emma's nose, some of which goes into her lungs, but some also ends up in her stomach. Too much air in her belly causes extra pressure and can lead to problems (in the worse case scenario, a perforated bowel/hole in her intestine).

When I left the hospital late this afternoon, Emma was looking a bit better and was sleeping peacefully. I checked in with the NICU again tonight and her nurse said she was more active and alert than she had been all day. Let's hope that means Emma is starting to feel better.

Another Rough Day

This morning Emma started to act "sick." She was requiring more oxygen and have more frequent bradycardia spells (in which her heart rate slows down) and periods of apnea (in which she stops breathing), so the team felt she needed a break in order to conserve her energy. After some discussion, they made the decision to re-intubate her and she is now back on a ventilator. She's still exhausted and very sleepy...

Today's repeat abdominal xray didn't show any big changes from yesterday -- not worse, but not better either. Emma still has a lot of air in her belly (along with some blood), so until proven otherwise, they are treating her as if she does have NEC and are withholding her feeds and giving her antibiotics. In addition to the IV fluids (to prevent dehydration), she's also being restarted on TPN (total parenteral nutrition) - the intravenous solution of sugar, minerals, vitamins and proteins which is given along with another mixture of lipids). Hopefully she will regain her strength and won't lose too much weight. Then she might be better able to fight this infection. For now, as the docs say, it's just wait and see....

Day 50

Emma's 50th day in the NICU has not been one of her best. Early this morning, she began to have problems tolerating her feeds. This, combined with some other signs (including more frequent periods of apnea and bradycardia, evidence of blood in her stomach, and fluctuating body temperature) had the team worried. They ordered an abdominal xray this morning and while the docs haven't officially given a diagnosis, they feel the results are "highly suspicious" of NEC (nectrotizing enterocolitis). NEC is a serious gastrointestinal disease which causes infection and inflammation of the bowel and intestines.

For now, they have stopped Emma's feedings and have started her on IV fluids. She's also receiving additional antibiotics (we have to wait 48 hours for the blood cultures to come back to know for sure if she has a bacterial infection). She'll have another xray tomorrow, so we should know more then. If she does have NEC, Emma's feeds will likely be withheld and antibiotics continued for 7 to 10 days. If her bowel perforates or her condition worsens, she may need surgery. Let's hope and pray that won't be necessary and that tomorrow's update brings more positive news.....

Emma's 7 week Birthday

Both Eric and I were able to visit Emma at the same time today (I usually visit during the day, while Eric does the evening shift after he gets home from work). When we arrived, we found a lovely gift waiting for Emma -- this beautiful pink preemie quilt made especially for her by the mom of a dear friend (THANK YOU Judy S. !!!)

Emma is 7 weeks old today and weighs in at 2 pounds, 6 ounces. She's added almost 6.5 cm to her birth length and is now measuring near 14.5 inches. She's now the biggest/oldest baby in her room in the NICU!

The team hasn't yet started weaning her from the CPAP to a nasal cannula as Emma tends to desaturate quickly whenever they even briefly take the CPAP off. She's had several big spells over the last 2 days (often just after she's been fed), so she's been re-started on caffeine. Hopefully this will stimulate her to keep breathing, something her immature nervous system occasionally forgets to do. Emma also tends to sleep with her mouth open, so it is hard to get a proper seal on her CPAP mask. When it's not sealed properly, air leaks out, and her oxygen saturation levels drop. She often enjoys sucking on her soother, though, so now we've learned to pop it in her mouth to try and keep her O2 sats. within the proper range.

Soon, we'll start to introduce a pacifier during her feedings so she can begin to associate sucking with the feeling of having food in her stomach. This will be the first step in a long process of getting her used to coordinating the sucking, swallowing, and breathing that must occur for real breastfeeding, so it's a big step forward.

Remember to breathe!

As I walked in tonight, the nurse was gently rubbing Emma's back. A quick look at the CPAP machine and monitor told me that Emma was having a major "spell". I don't think I've ever seen her oxygen saturation hit 27% before, and I'll be happy if I never see it that low again, although in reality it probably wasn't as bad as some of the spells that cause her heart rate to drop. About ten minutes later she stopped breathing again, so I gently rubbed her back and she immediately started breathing again (she usually comes out of it on her own, but I didn't want to wait and see given the major spell a few minutes prior.)

Emma has been having about one spell per day, but she had four today, so they'll be discussing putting her on caffeine at rounds tomorrow. Remember to breathe Emma!

First Eye Exam

Emma had her first eye exam today. It's still very early -- too early to tell for sure -- but so far there is no evidence of ROP. She has another exam scheduled in 2 weeks.

She hasn't been gaining much weight, so they are increasing the fortification of the milk.

She continues to require supplemental oxygen, but overall is doing well.

No change to report!

Emma continues to do well on CPAP. Her oxygen levels do drop from time to time, but I understand that is to be expected given her age. The nurse tonight mentioned that they may start trying her on nasal prongs (i.e. just a bit of extra oxygen) soon. They start with about an hour off CPAP and work their way up from there.

Emma Discovers her Thumb

Emma and I did some multi-tasking today. During our Kangaroo Care Cuddle this afternoon, she had her lunch (milk mixed with a vitamin solution, hence the icky colour of the liquid in the gavage tube) while I rocked her. One of her nurses walked by and saw that she was trying to find/suck her thumb. Luckily, I've started bringing a camera with me every day, so we were able to catch the moment :)

(click on the image for a larger version)

The pic also shows Emma's CPAP, which sort of looks like itty-bitty scuba gear. A tiny little mask covers her nose and is connected to a tube which can deliver varying degrees of oxygen/air pressure making it easier for her to inflate her lungs.

As Eric mentioned last night, Emma continues to do well on the CPAP, and apart from the odd apnea spell, has been fairly stable over the past few days... She's scheduled to have the first of several eye examinations later in the week, but apart from that, all she has to do now is grow and get stronger.

A cuddle and an update

I had Emma out for an hour-long feed and cuddle tonight. She's still doing well on CPAP, is tolerating feeds well, is gaining weight, and is off antibiotics. While she continues to need supplemental oxygen when she is handled, she spent much of the day cruising along at 21%.

Laurie and I are thrilled with the progress our little fighter is making, and I hear that she's already somebody's hero.

Another step forward!

Emma has had another good day (except for one very scary spell in which her heartrate remained distressingly low for what seemed - to Mommy at least - like a VERY LONG time!). She's doing so well, in fact, she's being moved to another room in the NICU for babies who are not as acutely ill. That is a huge step in the right direction!

She's still doing very well on CPAP and was even able to keep her oxygen sats. up while breathing unassisted (i.e., not receiving any additional 02) for about 2 minutes tonight while the respiratory therapist was doing her care.

Her weight today was 1032 grams (or about 2.4 pounds). As last night's picture shows, for such a teeny little girl, our lovely Emma has half-pound cheeks :)

Photo from last night

With the cooperation of a kind RT, I was able to get a pic of Emma's face last night. She's showing solid signs of weight gain.

(Click on the image for a larger version.)

Another good day

Emma's had another good day. She continues to to well on CPAP, is tolerating feeds well, etc. I was at the hospital for her 8pm meal and held her. She stared at me for a while and then drifted off to sleep.

Six Weeks Old Today

Emma is 6 weeks old and has had a very good day. Her blood culture came back negative, meaning she does NOT have a blood infection (a possibility raised earlier in the week), so one of her antibiotics was discontinued. She's still on CPAP and while her oxygen saturation levels drop from time to time, she is usually able to recover on her own without intervention by staff. The docs are pleased with her progress... here's hoping it continues!!

An interesting afternoon

After having a nice cuddle with Mom this afternoon, Emma was moved into a new isolette. Apparently she's considered to be "a big girl" now and no longer needs the "Cadillac" incubator with an extra heating element and humidified air :)

Just as her nurse started her standard care (which includes taking her vital signs and suctioning her airway), Emma vomitted up part of her last feed and some of it got into her ET tube. The nurse wasn't able to clear it all, so she decided to remove the tube entirely. The team was considering extubating Emma and putting her back on CPAP some time tomorrow, but our little diva, in her dramatic fashion, decided she wanted that darn tube out today! So, after a frenzied few moments involving two neonatologists, a couple of respiratory technicians, and several nurses, Emma is back on CPAP! As of this evening, she was doing very well on it. Let's hope she's able to maintain her oxygen sats. at acceptable levels and is rid of the ET tube and ventilator for good!

In other exciting news, Emma is now a full-fledged member of the "Kilo Club" (complete with a certificate signed by her nurse and doctor) as her weight has reached a full kilogram. Finally, a happy milestone to celebrate!!

An upswing at last

Emma's doing much better today. She does appear to have bacteria either in her lungs or the ET tube, but the antibiotics should take care of that. Most importantly, her urine output continues to be fine, she's tolerating feeds, and they've started the process of slowly reducing her vent rate and oxygen concentration. As of tonight she's down to 25 per minute (as compared to 50 last night) and they're running oxygen around 27%.

Tonight Emma was the most active I've seen her so far. She was sucking on her soother and exploring around with her hand while I fed her. Looks like she's finally on an upswing!

A Long & Winding Road

Despite the fact that Emma is back on the ventilator and is getting help to breathe, she's not recovering as well as the team had hoped. There are a several issues we're dealing with today:

1) While her oxygen requirements aren't terribly high (typically running between 25-30% unless she's being handled by the nurses when she needs as much as 50% O2), her ventilator setting remains high (i.e., she's at 50 bpm and can't be switched to the CPAP again until she's stable at 15 bpm).

2) Although she received a tranfusion yesterday, her hemoglobin remains low (same as it was yesterday, pre-transfusion), so they're giving her another unit of blood tonight.

3) Emma hasn't had a pee since 3:00 p.m. yesterday. At first, the team wasn't overly worried and thought it was due to a combination of the morphine she was given during the re-intubation procedure, the several doses of diuretic she's had over the past few days (which "dried her out"), and the fact that she's been exhausted. As the day wore on though, they became increasingly concerned about her, gave her extra fluids in an effort to get her to pee, and eventually inserted a catheter. She still wasn't peeing, so they're now wondering if she has a kidney or urinary tract infection. More testing to be done tonight.

4) The trach. aspirate culture came back positive indicating Emma has a bacteria in her lungs/airway. They're not sure if it is the same infection she had a couple of weeks ago or not, but they've started her on another 'round of antibiotics.

We wish Emma could just get a break... it's so hard to see her struggling.

** Update ** - Emma finally had a really big pee for her Dad who was waiting to change her diaper this evening, so the team is not as concerned about it now... One less thing to worry about.

A Bump in the Road

As Eric reported earlier, Emma was reintubated this afternoon and is back on a ventilator. While we knew this was a possibility, it is still hard not to be somewhat disappointed... She was just working too hard to breathe entirely on her own and was getting too tired. The team decided this morning that it would be better to give her a break, put her back on the vent., and let her recoup some of her strength. Emma lost several ounces in the last few days as all of her energy has been going into breathing, so hopefully being back on the respirator will allow her regain some of the weight. She also had another blood transfusion this afternoon, and Eric (who is visiting her as I type this) just called to say she is now a more healthy-looking pink colour.

Let's hope that over the next few days Emma will rally (once again) to get past this hurdle so we can move on and get her off the ventilator for good.

Reintubated

Laurie called from the hospital. Emma became so exhausted that they had to reintubate her. More later.

Status Quo

Not much has changed since Eric's post this morning.... Emma hasn't had to go back on the ventilator, though she is still struggling. Her oxygen requirements have varied over the course of the day from 25-50% and she's still receiving 20 breaths per minute from the Bi-Pap. She's going to be given an extra daily dose of medication to minimize fluid accumulation in her lungs and the team has also started her on another med. as there is some concern she may be developing a small ulcer in her stomach.

When I visited her this afternoon, Emma still looked pale and tired from the effort of breathing on her own, but at least she was a bit more alert and had her eyes open from time to time. We haven't been able to hold her since Thursday, so we hope she'll be more stable and stronger very soon...

Fork in the road

I just spoke to the NICU and while Emma's still holding her own, she's having a bit of a tough time. Overnight they had to increase her oxygen concentration and bump up the Bi-PAP to provide 20 extra breaths per minute. She's tolerating feeds well, her lungs look better on the xray, and everything else is fine, so the only concern right now is respiration. At this point she appears to be at a fork in the road: If she gets any worse, she'll need to be intubated again for a while, if she she improves she won't.

It's important to remember that she's only at 29 weeks, still 11 weeks until her "due" date. She's only been breathing on her own for a day now, and it's hard work. It's just going to take her some time to build up stamina. If she does need to be re-intubated, it will likely only be for a short time.

Evening Update

Emma's now holding her own on bi-pap with 21% oxygen (normal room air). When I dropped in to visit around 21:30 she was sleeping peacefully. Her oxygen saturation did drop a few times, but she recovered by herself quickly each time. They'll xray her lungs again tomorrow to see if they are still wet, but for now she's doing well.

It's nice to see her off the ventilator and IV fluids. Definately moving in the right direction!

A Rough Day

Emma has been having a rough go of it today.... She's having to work hard to breathe on her own and is all tuckered out. She was switched from a CPAP to a Bi-PAP (Bilevel Positive Airway Pressure) late last night. Bilevel means that the pressure varies during her breath cycles. When she inhales, the pressure is similar to CPAP. When she exhales, the pressure drops, making it easier for her to breathe. Unlike a CPAP device, a Bi-PAP can also provide her with an additional breath of air (currently set at 10 per minute), kind of like a "boost" to assist her in maintaining adequate oxygen.

Emma was struggling so much this morning the team thought one of her lungs may have collapsed. Thankfully, an x-ray showed that her lungs were (only) very wet, so she was given another dose of diuretic to help get rid of the extra fluid. She was still very listless when I was in to visit this afternoon, but her nurse said she was responding well to the medication. Based on the results of another blood gas to be taken late this afternoon, Emma may need to be re-intubated and put back on the ventilator. That is definitely not something we want to happen, so the team is doing everything they can to avoid it. For now, we just have to wait and see...

Five weeks old and making progress

Emma had a big day today. She's five weeks old, and around 2pm she was extubated and put on CPAP. I was in for a late night visit, and as of 10pm she's holding her own. Her oxygen saturation does drop from time to time, but she usually recovers on her own without any intervention by the medical staff. All things said, this represents a major step forward and will be much better for her lungs.

Steady Progress

After having 2 scarey apnea spells overnight, Emma was started on caffeine again early this morning (as a stimulant, caffeine will help to reduce apnea) and it appears to be working -- she didn't have any other "spells" afterwards. I was actually able to hold her for 2 hours today, which we both enjoyed!

Emma's oxygen requirements were down to 24-28% during the day and her ventilator settings were down to 20 bpm. The team will reduce her vent. settings further to 15 overnight.... if she remains stable, the plan is to switch Emma from the ventilator to a CPAP sometime Friday. While we've been warned that she may not be able to tolerate the CPAP for very long (she may become too tired/weak to breathe entirely on her own) and may need to be re-intubated, even a few hours off the ventilator will be better for her lungs.

Finally, as Emma no longer needs IV feeding (she's now on full feeds of breast milk) and is off antibiotics, her central line was removed today... it was nice to see her finally able to freely move both of her arms without wires and tape :)

Cuddle with Dad

After waiting patiently for several weeks, Eric was finally able to hold Emma this evening.

A Much Better Day

After having a difficult week, Emma is clearly feeling better today. Her oxygen and ventilator requirements are much lower than they've been. In fact, if she continues to be stable, the team feels she may be ready to be extubated by the weekend!!

If all goes well, she'll be taken off the ventilator and put on a nasal CPAP device. Unlike a respirator, the CPAP doesn't actually mechanically breathe for Emma, but provides continuous air pressure that makes it easier for her to inflate her lungs when she inhales. It is both less aggressive and less invasive than the ventilator. This will be a major milestone/big step forward for Emma as continued dependence on the respirator is hard on her already fragile lungs.

Further good news: Emma had another head ultrasound yesterday and the results were normal with no evidence of a intraventricular hemorrhage (aka "brain bleed").

So, it was good news all around today.... hopefully the trend will continue!

And a leap forward...

Mom visited earlier today and Emma was doing well. They had another cuddle. (Dad's still waiting for his turn...)

I just got in from a visit. While I was there they lowered her vent rate to 30 and her oxygen down to 23% and she continued to do well. I'm sure they'll be more ups and downs, but it's nice to see things going in the right direction.

One Step Forward, One Step Back

After having an awesome day yesterday, Emma's condition was more unstable today. She had more difficulty breathing and required more oxygen and a higher ventilator setting again. The docs ordered a chest x-ray this afternoon, which showed that her lungs were "wet" (due to fluid accumulation) so she was given an additional dose of Lasix (diuretic). Unfortunately, she couldn't be taken out of her isolette and we weren't able to do Kangaroo care/cuddling. Hopefully, she'll be doing better tomorrow....

On a happier note, Emma is being weaned from her TPN (total parenteral nutrition - an intravenous solution containing sugar, minerals, vitamins and proteins which is usually given along with intralipids). If all goes well, by tomorrow Emma will be receiving all of the nutrients she needs from breast milk. That's a big step forward!!

Visit with Dad

I dropped in for a late visit tonight, and Emma is doing well. They don't like taking her out of the isolette more than once a day, so we didn't have a cuddle, but I fed her and changed her diaper. She decided to test me out and take another poop during the process, but the nurse's advice to keep the folded diaper under her paid off. Nice try Emma! :)

A Good Day!

Emma is having the best day she's had in a week! In fact, the nurses felt she was stable enough to come out of the isolette and Mommy was able to hold her for over an hour this afternoon!! Hopefully Daddy will have his turn to cuddle her tonight.

Emma's ventilator and oxygen needs have decreased considerably and although she continues to desaturate from time to time, the dips are not as low as they've been over the past 5 days and she manages to come out of them without any intervention. She's continuing to tolerate her feeds well (up to 11 cc every 3 hours this afternoon) and is now at a "hefty" 915 grams (2.0 pounds)!!!

Upswing continues!

I spoke to the NICU nurse this morning, and Emma continues to do well. She's up to 10cc per feed and her requirement for supplemental oxygen continues to be relatively low.

Feeling better!

Emma's having a better day! Her chest seems to be improving, and while her oxygen saturation is still dipping, she is bringing it back up herself without requiring any intervention. Emma is also requiring less supplemental oxygen, tonight she was cruising along at 25%. They have removed the stitch from her back, and the incision is healing perfectly. She's tolerating food well, and is up to 9 cc every three hours.

When I left tonight she was having a nice comfortable snooze. After the past few days, it's very nice to see her improving!

Four week Birthday Update

In an effort to help Emma breathe more easily over the past few days, the NICU team has had to steadily increase her oxygen and ventilation settings. While this is partly related to her recently diagnosed tracheal infection, we also know that she has Respiratory Distress Syndrome and Bronchopulmonary Dysplasia (see www.cheo.on.ca for more information).

In spite of the medications and frequent suctioning, she's still having difficulties. The docs decided to replace her ET tube again today (a new one had been inserted last week too), as it appeared to be at least partially obstructed and was leaking air, making it much more difficult for her to breathe. While the procedure can't be pleasant for Emma (though she's sedated and given pain medication), it went very well and she tolerated it without a problem. Unfortunately, it seems that there is a leak around the new tube as well and she is still having a lot of desaturations this evening (though not so bad as yesterday or this morning). Thankfully, Emma was sleeping more peacefully tonight and her apneas were less severe (she was typically able to recover from these on her own and didn't need an extra "boost" of oxygen to help her come out of them). Our hope now is that the new tube, combined with the antibiotics and a blood transfusion (which she received today), will start to fight off the infection and help her to get stronger.

On a happy note, Michaela came with us to visit Emma tonight and when we told her that Emma was 4 weeks old today, Michaela sang "Happy Birthday" to her and suggested we get a party hat and candles for Emma.

Soon, baby, soon....

Part of the mystery solved

Well, we now know for sure that Emma has an infection. The cultures from the trach aspirate came back positive today, indicating a bacterial infection is growing in her trachea (likely related to the ET tube), resulting in excess fluid accumulation in her lungs. After consulting with the Infectious Disease team again, the NICU docs have changed one of her antibiotics and discontinued another.

Unfortunately, she had several "spells" again today (after not having any last night), so her ventilator and oxygen settings remain rather high. Overall, though, Emma seemed to be a bit less agitated today and the nurses weren't suctioning as much gunk out of her lungs, so we hope the meds have started to work and that she'll feel better very soon.