Another not so good day

In spite of the additional medication, an x-ray today showed that Emma's lungs continue to "look bad" in the words of one of the docs. Fluid is still accumulating in them and she is requiring frequent suctioning (which, as you might imagine, she does not enjoy). The consensus of the NICU team is that she now has some sort of lung infection and so she was started on antibiotics late this afternoon. More cultures were taken today, so we hope to have a more definitive answer regarding the infection in a couple of days.

Otherwise, no real change since yesterday. Emma is still letting the nurses know she doesn't appreciate the poking/prodding (by having more frequent periods of oxygen desaturation) and she became righteously annoyed when placed on her tummy this afternoon (Emma seems to prefer lying on her right side). She's affectionately becoming known as our little "diva" amongst her NICU nurses :)

Still not a good day

I was in to visit Emma tonight and she's still having a rough time, although the nurses told me that ups and downs are to be expected, and this is one of the downs. She's needing additional oxygen and a higher vent rate, but she has lost some weight, indicating that the lasix is working. This will hopefully help eliminate the excess fluid and dry out her lungs. A sample of secretions from her lungs were sent to the lab last night, and we're hoping that there is no sign of infection. The good news is that she's tolerating feeds well, and they're continuing to increase her food volume. Hopefully tomorrow will be a better day!

Not a Good Day

According to the NICU nurses, Emma is "not having a great day" today. Fluid is accumulating in her lungs and they've had to give her additional medication (which then can affect her kidney functioning). She hasn't been responding well to the ventilations (up from 35 bpm yesterday to 55 bpm today) and is still requiring higher oxygen levels.

this roller coaster ride is not fun

Late Night Visit with Dad

Eric visited Emma late this evening and reports that she is now much more stable. Yay!!!

Nurses say she clearly let them know she did not appreciate the move from CHEO and would much rather sleep undisturbed, thank-you-very-much.

sleep well and grow strong, little one...

Emma Says Shhhh

This photo was taken while Opa, Grandma and I were visiting Emma today.... I think Emma was telling us she'd had enough excitement for one day and wanted to have a snooze :)

On the Road Again

As the docs at the Children's Hospital deemed her condition to be adequately stable, Emma was transferred back to the General Hospital's NICU this morning. She did not enjoy the journey, and all the necessary poking/prodding, and was more unstable today. She had several "spells" (apnea episodes), more frequent desaturations, and needed more oxygen than she has for several days. Her hemoglobin has dipped again (meaning she will probably need yet another blood transfusion) and a heart murmur can still be heard (not sure what that means, will have to talk to the neonatologist about it).

Hopefully she will have a better day tomorrow.....

Meet the grandparents!

Emma's grandparents came into town today and we took them by for a visit. Emma's doing well -- her requirement for supplemental oxygen continues to decline, during our visit she was on 22% O2 and maintaining her sats. She did have some problems tolerating feeds, but so far nothing really serious. Emma is now receiving caffeine to help minimize apnea episodes (and she didn't have any "spells" today!), so Mom can stop drinking decaf. :)

Photo from last week

This photo was taken at the Children's hospital on August 17th around 10:30am. (You can click on it for a larger version)

Doing well!

Laurie, Michaela, and I all dropped in to see Emma this afternoon, and she's doing very well. Her need for supplemental oxygen continues to decline - in fact while we were there she was on 21% (i.e. standard atmosphere). She's being fed 1cc of breast milk every three hours and is tolerating it well.

Three Weeks Old...

...and Emma continues to do very well.

When I arrived for a visit this afternoon, though, I found her surrounded by a crowd of NICU staff. I immediately feared the worst, but luckily a friend was with me (thanks Lisa!) and I was able to remain fairly calm even though seeing the team feverishly working on Emma scared a decade off my life. Turns out Emma has finally grown enough (she now weighs in at almost 1000 grams!!) to "graduate" to a larger endotracheal tube and I had arrived just as they started the procedure to change the tube. According to her nurses, Emma tolerated everything well and by this evening it was clear that the change was a positive one... she is having far fewer tube leaks and the team was able to lower her oxygen and ventilation requirements.

The best news is that as she has now stablized, Emma will be returning to the General NICU as soon as a bed there becomes available (they're full right now, so we're just waiting for another baby to be discharged). That's a very good sign!

Another good day!

Apart from one scary apnea episode (just as I was about to leave), Emma had a fantastic day. She's looking much happier, antibiotics have been discontinued, and she was restarted on breast milk. When I touched her chest she made it quite clear that my hand was too cold, but she seemed happy to hold my finger for a while. Hopefully she continues to improve and we'll have a good cuddle in a few days.

Day 19 summary

Emma's blood pressure remained distressingly low until mid-day, but eventually came back to normal limits after she was given several medications. There was some concern about her renal/kidney functioning for a while too, although that seems to be resolved now. The results of the echocardiogram were also normal, indicating good flow through her heart valves/vessels/chambers.

Overall, todays post-surgical developments were not unexpected in a preemie of Emma's size although they mean that she will likely be staying at the Children's hospital for a while longer until she is more stable (before going back to the NICU at the General).

Prior to surgery, the alarms from the machines monitoring Emma's breathing and oxygen saturation rate were going off very often, indicating she was having frequent apnea spells (in which she stopped breathing on her own). As I mentioned last night, they hadn't been ringing since she returned from her operation. While I had taken this to be a positive sign, her nurse conceded that they simply had not reattached the same leads to the monitors. I was disappointed upon hearing this, but Emma's nurse reassured me that she is breathing much easier now and they will likely be reducing her ventilation requirements over the next few days.

On another positive note, Emma has gained a fair bit of weight... She's up from 1 pound 8 ounces at birth to 1 pound 13.5 ounces today. Yay!

Ups and Downs

Emma's blood pressure dropped last night, causing some concern. She was given some extra fluids and started on dopamine to increase her BP. Her hemoglobin levels are a bit low, and she'll be getting a transfusion today to address that. They also just finished an echo to have a look at her circulation. She's now stable and resting quietly.

A Very Good Day

I just got back from visiting Emma again and, according to her nurses, she's had "an excellent day." She's been sleeping peacefully since the surgery this morning and the alarms on her monitors have not gone off a single time all afternoon/ evening! She's been given a bit of morphine for pain management, but does not seem to be in any distress at all. She just *looks* so much better...

I think we'll sleep better tonight.

Surgery Update

We're home now after having a chat with the surgeon and a quick visit with Emma, who is sleeping comfortably back in the NICU. As it turned out, the duct was quite large and had thin walls, so the surgeon opted to place a 4mm titanium clamp on it. He indicated that the lung he saw looked quite good, and that her blood pressure came up nicely when the clamp was applied. The only downside of the clamp is that it may apply pressure to one of the nerves connected to the vocal cords, and if it does, it could result in a hoarse sounding voice. We'll have to wait and see.

Needless to say Laurie and I are both greatly relieved that things went well and that this hurdle is now behind Emma.

Surgery went well

Just saw the anestheologist in the hallway - everything went well! We're waiting to see the surgeon.

In surgery

Nurse just dropped in - so far surgery is going well.

Waiting sucks...

Surgery Scheduled Tomorrow

I just spoke to the surgeon. Emma's WBC remains elevated, and they have detected a small amount of bacteria in her urine, suggesting a UTI. She's otherwise asymptomatic and the bacteria is possibly a side-effect of the antibiotics. They have stopped the two antibiotics they were giving her, and started a new one. They've also stopped feeding her breast milk to reduce the load on her digestive system. The surgeon, neonatologist, and physician from infectious diseases have discussed the case and believe that the benefits of proceeding with the PDA ligation outweigh the risk related to an unknown infection and they're scheduling surgery for tomorrow morning.

Day 16: One step forward, two steps back.....

Overall, Emma had a fairly stable day and she slept peacefully throughout my visit to the NICU tonight. As Eric mentioned earlier, her WBC count remains elevated although she is otherwise asymptomatic and shows no signs of infection. Given that the docs are still somewhat reluctant to proceed with surgery when the cause/ location of the infection remains unknown, they asked for a consult from the Infectious Disease service. The I.D. team was in to see Emma this afternoon but they too are uncertain as to the cause...

Emma received another blood transfusion today (her 3rd) but thankfully has not had any further episodes of prolonged bleeding after blood draws (as she had late last week). She didn't tolerate her breastmilk feeds again though, so they have been discontinued. She is scheduled to have an abdominal xray tomorrow morning... hopefully there will be no evidence of NEC (necrotizing entercolitis, a common but v. serious gastrointestinal disorder seen in preemies). She's also going to have additional blood tests and a chest xray. Once the results of all of these are back, the team will make a decision regarding surgery. We hope to know by noon tomorrow...

Thanks to everyone for their good wishes... I was finally released from the hospital on Friday evening and am feeling better. Apart from mild anemia and another week on antibiotics, I should be as good as new soon.

WBC Mystery Continues

Emma's white blood cell count, which had dipped to 18, is back up to 23.9. Blood cultures are still negative, she's been treated with broad spectrum antibiotics, and she's not showing any other signs of being sick, so the cause of the elevated WBC remains a mystery. She seems to be doing fine otherwise.

Saturday Night Update

We all went over to see Emma before dinner. Her WBC is back up again, suggesting that she still has an infection, but a second blood culture is still negative after 48 hours, so we don't know what the infection is or where. There also seems to be leakage around her ET tube, and the ventilator is alarming every few minutes. She had a two hour period this afternoon during which her oxygen levels became unstable, but things seem to have stabilized again. The plan is to insert a larger ET tube in the operating room in order to avoid the need to sedate her a second time.

Despite all this she's resting comfortably and everything else looks good. She opened her cute little eyes a few times, and occasionally stretched her legs. We're hoping that her condition remains stable and that they're able to move forward with the PDA ligation surgery in the near future in order to reduce the load on her lungs and heart.

Saturday Morning

On the way home last night we stopped in to see Emma, who was sleeping peacefully on her tummy.

This morning she's doing even better. She's requiring a lower oxygen concentration, is active when the nurses handle her, and every indication is that whatever infection might have driven up her white blood cell count is subsiding. Hopefully this means we can move forward with the surgery soon, which in turn will reduce the load on her lungs and help her take a bigger step forward.

Ready to go!

Apparently it took some calls to higher-ups in the hospital, but the elusive OB/GYNs have appeared and Laurie is good to go! I'm on the way to pick her up, I'm sure she'll have more details to share with you all later.

Friday Afternoon Update

I've spoken with the NICU twice so far today, and Emma has continued to improve. Her WBC is decreasing, and she's only had a few very minor spells. They gave her some lasix to help decrease fluid around the lungs, and she promptly had a good pee. They're about to restart her on breast milk. This morning there was some concern about bleeding, but tests this afternoon indicate no problems. The surgeon hasn't been by to see her yet, but she definately appears to be moving in the right direction.

Laurie's also doing fine, other than the fact that she's been laying there waiting about 9 hours to see the docs. The resident was in around 6am, had no information for her, and said that the team would be by to see her. The nurse paged the OB/GYN folks sometime around 11am...four hours and counting. To say Laurie is getting frustrated would be an understatement.

If anyone from the General happens to be reading, please do me a favour and help reunite the OB/GYN department with the patient they appear to have abandoned on the 7th floor.

Rogers Wireless Message

Laurie and Emma both doing well.

--
Sent from my Rogers Wireless Cellular Phone

Riding the Rollercoaster

As if there wasn't enough excitement today, Laurie started bleeding late this morning and I took her to emerg. Several hours and an ultrasound later she's scheduled for a D&C tonight.

Meanwhile, back at the NICU, Emma had a few spells today. They adjusted her ET tube and she started responding better to the ventilator. They've drawn more blood samples, and started a second blood transfusion this afternoon. A set of x-rays taken this morning appeared normal. Other than the so-far-unexplained high white blood cell count, she has stabilized and had a good afternoon.

Michaela is just about settled in with Anne, and I'm heading back to the hospitals.

Surgery Cancelled Today

The medical team has decided to postpone Emma's surgery as her white blood cell count remains elevated, indicating she still has an infection of unknown cause (despite being on antibiotics for the past 2 days). As the surgeon said, they don't want to make a high-risk situation worse. Emma's condition did not stabilize overnight as the doc. had hoped (she had a few apnea spells and did not respond well to the ventilator). More tests have been ordered and now we wait. The roller coaster continues...

Meeting with Cardiovascular surgeon

Up 'til now, I'd been led to believe that the surgery Emma is facing was relatively routine and straight-forward. However, after talking with the surgeon this morning, I realize that while it is technically fairly routine, the potential complications posed by Emma's fragile condition and her v. preemie size will make this a much more difficult procedure.

Intellectually I know that the doc. has to present us with all possible outcomes and worst-case scenarios, but hearing him discuss the very real possibility that she may not survive the surgery has me scared senseless.

Pending the results of another echocardiogram (to be done this afternoon), a brain ultrasound, and bloodwork, surgery will be at 8:00 a.m. tomorrow.

New Temporary Home

We just spoke to the Children's Hospital. Emma and her entourage (aka the transport team) have arrived safely and she's doing just fine.

Tuesday Night Update

We just heard from the NICU that Emma will be transferred to the Children's Hospital later this evening in preparation for surgery to close the PDA, likely to take place tomorrow or Thursday. We'll meet with the medical team (cardiologist and cardiovascular surgeron) tomorrow morning and will know more then.

please keep Emma in your prayers,

Oh Happy Day!

Finally, after 11 long days of waiting, I was able to hold Emma for the first time today!!!

We hadn't realized she could even be removed from the isolette, let alone held, so, of course, we jumped at the opportunity when the nurse offered us "a little cuddle". The NICU advocates "Kangaroo Care" (aka "skin-to-skin care" in which the baby is placed on the parent's chest clad only in diaper and cap). It probably took 10 minutes for the nurse and the respiratory technician to get Emma (and her tubes & wires) moved out of her incubator and positioned properly, but I was able to hold her for more than a half hour. At first, I was worried by the ringing of the monitors/alarms (signifying that Emma's oxygen saturation levels or heart rate had changed) but she soon settled in and got comfy. It was so wonderful to hold her and feel her movements against me... I'll remember those special, precious moments for the rest of my days.

Afterwards, I was able to feed Emma again and change her diaper. It is amazing how much I look forward these routine baby-care tasks :)

The NICU nurse also gave us this card with Emma's footprints on it...Given that she seems to have very long feet (like her parents :), it will give you a sense of how very tiny she is...


While the results of the echocardiogram hadn't returned when we left the NICU today, the neonatologists were 95% certain that Emma will require surgery to close the PDA. We should know more tomorrow.

Emma Opens Her Eyes!

I had a lovely long visit with Emma this evening. Timing was right, and I finally had the chance to feed her (by giving her a syringe containing 7cc of breastmilk through a gavage tube - a small flexible tube inserted through her nose and into her stomach). Even better, though, was when Emma finally opened her eyes! (a baby's eyelids are typically fused closed until sometime between the 24th and 26th week, so she was right on schedule at 25 weeks and 3 days). Maybe the nurse was just humouring me, but she said that Emma had not opened her eyes all day, so must have been waiting for my visit. I am ridiculously thrilled by these small advances!

In other news, Emma is scheduled to have an echocardiogram tomorrow to check on the PDA, but barring any significant change/improvement, will likely have surgery (ligation of the blood vessel), possibly some time later this week. Her hemoglobin has dropped since the weekend, indicating that she will probably need to have another blood transfusion by mid-week. She also had an apnea episode today (a brief period in which she does not breathe on her own). While the NICU nurse assured me that this very common, she also noted that it could be the first sign of an infection, so the team will be watching her closely for any other indicators of one.

Finally, in the light of the NICU tonight, I was able to see for the first time that Emma is actually quite fair-haired. On most of our earlier visits, she's been wearing a hat/bonnet to help maintain her body temperature, so we haven't been able to see her hair. Tonight, though, the nurse was adjusting her leads/tubes and so had the bonnet removed. It looks like Emma is going to be blond like her big sister :)

Visit with Dad

I spent some time at the hospital tonight with Emma, and had a good chat with her nurse and one of the residents. Overall, Emma's doing well, and they're about to start feeding her every three hours. Unfortunately the on-again off-again heart murmur is on again, and I learned that my previous post was somewhat incorrect. Her major problem is PDA, PFO is secondary. In short, there's a small blood vessel that connects the aorta to the pulmonary artery. Before the baby is born the lungs aren't used, and some of the output from right ventrical is fed back into the aorta. In a large number of premature babies, including Emma, the vessel remains open. They're going to try a third round of medication to close it, and if that fails she'll require surgery. Fortunately the surgery is relatively straight forward, and involves simply tying off the blood vessel responsible. The staff at the NICU also started bringing me up to speed on many of the other challenges that Emma will face and they lent me a good book on the subject. So on one hand I know she's doing well, but I'm also being warned that we have a rollercoaster ride ahead.

Saturday Update

Emma had a somewhat difficult day today. They replaced her ET tube, and while adjusting it, it slipped out, and they had to intubate her a second time. In the end, the tube is now entering through her nose, which one would expect is more comfortable than through the mouth. She has needed a few percent more oxygen and an increased vent rate, but we're told that is to be expected from time to time given her age. So far no heart murmur, hopefully it's gone to stay. Emma is tolerating food again, and is up to 5cc of breast milk every 4 hours. Overall she's doing well given the circumstances, but the little things that pop up on a daily basis are a constant reminder of how fragile she is.

Friday update

Emma is now a week-old and she had a busy day. Her heart murmur was detected again today, so she was given another dose of medication. Our hope is that this will resolve the condition over the weekend. If not, one more dose of medication can be given. If all else fails, she may need to have surgery to repair the heart valve/blood vessel mid-next week. Hopefully that will not be necessary!

Emma also had a PICC line inserted today (basically a central catheter that will stay in place longer than a tradition I.V. line to allow medications to be given without the need for frequent poking with needles) and reportedly tolerated the procedure well.

Although she had not tolerated the breastmilk feeds yesterday, she did so today, so the team is planning on increasing the amount she receives to 4 cc's every 4 hours tomorrow.

Finally, the umbilical lines (catheters that were placed into blood vessels within her umbilical cord) were removed and she was finally able to be placed on her tummy (important in the prevention of sores/skin break-down). As I left the NICU tonight, she was sleeping peacefully with her legs curled under her and her little bum in the air :)

A Moms thoughts and thanks

Eric has wanted me to post an update for days now, but I have been reluctant to do so. The reasons for my hesitancy are hard to put into words. The past 6 weeks have been so very difficult, both emotionally and physically draining. Mostly, though, I think my resistance to blogging about Emma has been due to anxiety and fear.

I still find it hard to talk about Emma without crying. I'm so very scared for her. I wonder how long it will take before my heart doesn't leap into my throat whenever our phone rings, fearing it is the NICU calling. Going to visit her at the hospital is especially stressful for me. It is hard to see her, so tiny and frail, hooked up to the various monitors and leads and wires. My arms ache to hold her close, but we can't even really touch her due to her fragile state. Although she has been doing relatively well, with only the 'expected-for-her-very-premature-state' complications, I'm still afraid to be hopeful and optimistic. We had so much bad news during my hospital stay and every time we hoped/prayed for something positive, our hopes were dashed. Now, each time we speak to the staff at the NICU, we're reminded of how precarious Emma's health is. Even a report of a positive development/stable night is prefaced by "these are still early days and she has a long, hard road ahead of her..." It constantly feels as though I am waiting for the other shoe to drop and to be confronted by more devastating news...

Having said that, it is getting somewhat easier as days go by. Emma is a week old today and, thankfully, is holding her own. While we still can't be confident about her future/survival, I hope that as she gets stronger I will be more comfortable reporting on her condition here.

I also wanted to take this opportunity to thank everyone for their good wishes, support, and prayers. I can't begin to tell you how much they have meant to us.

Thank you all,

NICU Update

Nothing major to report. Emma didn't tolerate the milk, but they're starting to try some more.

Mom Visits

Laurie went to the hospital to see Emma by herself today and drop off a load of milk. She reports that the medication given to address the PFO seems to be working, and that they're no longer hearing a heart murmur. Emma also has developed a sore on her back, primarily due to how fragile her skin is at this point. Her vitals are stable, and she continues to do well.

Family Visit

Laurie, Michaela, and I dropped in to see Emma for a while and she's doing well. Some of today's developments sound scary, but we understand that they are to be expected in the normal course of events. She has a patent foramen ovale resulting in a heart murmur, and her hemoglobin levels were a bit low due primarily to blood drawn for required tests. She was receiving a blood transfusion when we arrived, and may be given medication to help address the PFO tonight. She had a cranial ultrasound this morning and it was completely normal. She's now up to 2ml of breast milk every 4 hours and is tolerating it well. Oxygen saturation, heart rate, and blood pressure all look good.

Overall, she looked more colourful than yesterday (the blood transfusion definately helped) and was sleeping peacefully on her side with her tiny hand in front of her face. Michaela seems to enjoy visiting her sister, and is completely unphased by the NICU, isollet, tubes, and wires.

Photos from Sunday

These photos were taken using very high speed black and white film and no flash, resulting in Emma's skin appearing somewhat darker than it is. Today she's looking more pale, but more about that later. Clicking on the images will take to you a larger version.

Rogers Wireless Message

Doing fine - more later

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Sent from my Rogers Wireless Cellular Phone

Visit with Dad

I just got back from visiting Emma. She had a sponge bath earlier this evening, and was working on her tan (aka phototherapy). While she's still on a ventilator (and will probably be so for a while), she's breathing a regular air mixture and her oxygen saturation has risen to 96% plus. Emma's also getting 1cc of mom's breast milk every four hours and appears to be tolerating it well. Apparently she's fairly active and has been peeing up a storm!

In summary, our little fighter is doing well!

Update from the NICU

As they say, no news is good news. Emma's still receiving regular room air and is doing well.

Comments enabled!

By popular request, comments are now enabled! Thanks for the suggestion - you know who you are :)

Laurie's Home!

I just got in from picking Laurie up at the hospital. We visited with Emma, who, according to the nurse, is "doing remarkably well". To avoid distrubing her with a flash I shot some high speed black and white film. I hope to have time to develop the film later today and post a few pics.

Still doing well

I just had a quick chat with the NICU nurse, and Emma is doing well - no changes to report!

Phone call to the NICU

Emma's doing well, and a recent blood gas analysis shows she's properly oxygenated. So far so good!

Laurie's expected to come home tomorrow, so hopefully you'll see some posts from her in the near future.

Emma's First Day

A few hours before Laurie went into labour, we met with two docs from the Neonatal team. Since they generally consider 24 weeks the threshold of viability, they meet with high-risk parents at 24 weeks to discuss various issues.

One of the many things they told us is that there are two critical windows. There's the first five minutes, and Emma had clearly made that. The second is the first twenty-four hours. Needless to say, I didn't get much sleep last night due to a combination of stress, worry, and Michaela deciding that 5:30 was a good time to wake up dad.

I guess I can sum it up by saying that Emma had a good first day. She's likely to be on a ventilator for a while, but she is now breathing regular room air (as opposed to a higher oxygen concentration), and hasn't shown any sign of difficulty. Perhaps I'll sleep better tonight.

Meet the sister!

This afternoon, I took Michaela in to visit Laurie and see Emma for the first time. I explained several times that her new sister was very small, and would have to stay in hospital for a while, and she took it all in stride. As we walked through the lobby, she proudly announced to a few strangers that she was going to see her little sister. The visit went well, and Michaela seems excited that Laurie will be coming home tomorrow.

Another Photo

Perhaps not as flattering, but it shows her face. It's hard to relate how tiny she is.

Emma's First Photo

Not expecting a delivery, I didn't have a camera with me, but Anne was kind enough to grab one of mine and bring it to the hospital. This is Emma's first photo, taken two hours and 25 minutes after her birth.

Emma Arrives

Emma was born on August 5, 2005 at 17:44. At only 24 weeks, she weighed in at 678 grams. As I watched, she arrived, lifted her tiny arm, and was ever so gently scooped up by the waiting NICU nurse and resident. Rushed to the NICU, she was intubated, and when I saw her a few minutes later she was a reassuring pink colour, and moving her arms and legs as if to say ,"Ok folks, I'm here!".