Sharpen your pencil, Tooth Fairy!
Elizabeth's bottom teeth are starting to come in, so it's no surprise that she is trying to chew everything in sight... She had some chicken for the first time a couple of days ago, and was brave enought to eat several cheerios today. She was able to move them around in her mouth until they were soft enough to swallow. So far she seems to be adjusting well to solids, which is really good, since breastfeeding may soon become a thing of the past.

It's time to take care of business...

Elizabeth and her pals know how to party!

Elizabeth continues to be an energetic baby and loves to get in trouble. At 8 and one half months (corrected) she is now sitting on her own. She is about 16 pounds and is now rolling on her tummy.
She appears to have her own agenda and will only attempt to move if she sees something that she can get into trouble with; wrapping paper is her new motivation. Elizabeth is doing excellent at her speech therapy and is beginning to babble using consonants and making sounds that resemble mama and dada. This is a huge milestone for her.

Happy Birthday Elizabeth! It is hard to believe that Elizabeth is 1 year old. She celebrated her birthday with a huge party and enjoyed every minute.

Pippi on the go!

Too much candy! Pippi passed out.

Today was Elizabeth's eye appointment at Mac. She didn't even cry when she got the drops. Her eyes are developing great. She is a bit farsighted, but according the doctor it is not a big deal.

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Bath time

This morning Elizabeth also went to a Growth and Development clinic at MAC, which she attends on periodically. She was weighed, measured, and her development assessed. She is now 13 pounds and 5 ounces, and is 60 centimeters short, which places her in the 3rd percentile for height (she is now on the chart!). The doctor was extremely happy to see that she is meeting most of her milestones, and was impressed at how well she was doing. Elizabeth still needs to spend more time on her tummy to strengthen her arms and get used to rolling around.

Last night was Elizabeth's first night without her apnea monitor and she slept until 5:30 when she woke up for a little snack. Until now, every time she had a nap she had to wear a strap with two leads on each side of her chest, which probably wasn't too comfortable.

Bring on the solids! According to the books, we were expecting Elizabeth to spit up her baby cereal... that didn't happen.

mouth hygiene is very important!

Elizabeth is 7 months old (31/2 months corrected). She spends her days playing with toys, kicking her legs and smiling at herself in the mirror. She also smiles at her parents and has even began to laugh.
She is about 11 1/2 pounds and is in the 10th percentile range for weight. It seems that she is taking after her mother and is not even on the growth chart for height.
At the most recent growth-and-development clinic (at McMaster), the doctor said that she is not showing any neurological deficits.
Another hearing test was completed, this time at Sick kids hospital, with similar results. She was diagnosed with "Auditory Neuropathy", meaning that her ears are working, but the sound is not being transmitted to her brain properly. As a result her brain may not be receiving the complete message or it's all jumbled. This means that she will have difficulties understanding speach. It appears that each case of auditory neuropathy is unique and treatments that have worked for some (such as hearing aids or cochlear implants) may not work for others. This disorder is not very common, and there's limited research. Elizabeth will have to go back for tests every six weeks to keep track of her development. She has began to learn sign and loves the sign for milk. Her parents will have to wait to find out what's in the future for her ears.

Miss Elizabeth is now over 5 months (2.5 corrected) and is getting cuter by the day. She was weighted at her doctor's office last week and was 10 pounds and 3 ounces (that's a gain of almost 2 pounds in one month).
She has been off the oxygen for about 3 weeks and is doing great. She only has to wear her heart monitor at nite. This is making it easier for her and her mom to get around. The nickname "busy lizzy" suits her well, since she is always on the move and rarely needs a nap. She likes to play all day, swatting at things and making all sorts of noises. She has also discovered her tongue and is making lots of cute faces.
Elizabeth has not had her ears checked since the last visit to the ear doctor but she has an appointment in early July.

Ready for summer...

On the move

Keep shaking me... I dare you!

Elizabeth is almost 5 months old (about 6 weeks corrected age). At the pediatrician office today she weighted in at 8 pounds and 5 ounces (3.77 kg). She has almost doubled since she came home.
She is still breastfeeding and keeps to a strict routine, she is fed every 3 hours, but enjoys an extra snack before bed in the evening. She is mostly awake and playing during the day, and only wakes up at 2:00 and at 6:00 to eat during the night. She is a wonderful baby.
Elizabeth's eye doctor told us that her retina have matured and she only needs to bee seen every couple of months (great news!).
She also went for her hearing test last week. The results were inconclusive, but were not positive. So far the tests have shown that her brain is unable to process electrical impulses from the cochlea (via the auditory nerve). She is waiting for another appointment at Sick Children's hospital to be seen by a specialist.

Camouflage...

At over 7 lbs Elizabeth is getting quite chubby, each day her parents find new rolls of chub. Elizabeth has settled into a schedule and is sleeping for longer periods at night and awake lots during the day to play.
Elizabeth is meeting many of her developmental milestones such as holding her head up, smiling, reaching out and tracking with her eyes. Her mom and dad keep her busy with all the latest toys. This week she is to see the eye doctor again and next week is to have her hearing checked again. Her parents are still a bit concerned with her ears as she does not appear to respond to some noises, hopefully it is only selective hearing like her father.
She still needs the oxygen but is using less now, mom has been weaning her off so hopefully by the end of May she will no longer need it. Elizabeth has not had any apnea or bradycardia episodes for two weeks so hopefully she has grown out of those "preemie" moments. Her parents are very lucky to have such a wonderful baby with such an amazing personality and cherish every minute spent with her.

I am thinking of a word tha starts with "M" and ends with "ILK", can you guess with it is?

It has been over three weeks since Elizabeth came home and she is doing amazingly well. When she was weighed last weeks she was 6 pounds and 4 ounces (2.835 kilograms). At the Growth and Development clinic that Elizabeth attended on Thursday, the dietician said that her weight gain was exceptional. She placed in the tenth percentile on the growth chart. Her height was in the fifth percentile at 20 inches (...Have you met her mother?).
The eye doctor said that her eyes are improving which is great since her favourite past-time is staring in the mirror.
The head ultrasound showed ruminants of old brain bleeds that are slowly being absorbed, nothing new.
Elizabeth is still on oxygen, but only on half of what she was getting when she first came home. She still reminds her parents that she is a preemie by having the occasional apnea or Brady spell, but they also seems to get less frequent.
She has lots of awake times and loves snuggling. Yesterday she went for another walk outside with her mom and Laurie.

Elizabeth has been home for about one and a half weeks and has done great. She is still getting small amount of oxygen (continuously). She came off the caffeine three days ago and wasn't quite herself for the first couple of days. Today she was in a much happier.
She had her first visit at the doctor's office last Thursday, which went reasonably well (she ended up getting the RSV shot). Elizabeth weighed 5 pounds and 1.5 ounces (2.31 kilograms) and was 43 centimeters long.
She has three appointments this week. A visit to the doctors, followed by a head ultrasound at JB hospital and an eye exam at Mac... She is a busy girl.

I like to nap during the day, so I can hang out with mom and dad during the night...

On Thursday, March 24th, Elizabeth finally came home. She is almost 40 weeks and over 2000 grams. She still needs oxygen due to scarring from chronic lung disease. Her lungs are slowly regenerating but not fast enough to keep up with her growth.
Elizabeth is also on caffeine. Heart and oxygen monitors are on all the time to make sure that everything is O.K.
It appears that she likes to be at home. She has been eating well and loves to snuggle with her mom and dad.

Happy Easter!

Boo!

Finally home!

Elizabeth is still having ups and downs. Her new caregivers are slowly beginning to get comfortable with her needs.
She has been eating like a pro. Her feeding tube was removed and she eats by breast with mom (lucky for dad) during the day and by bottle at night. Because the feeding tube was removed, her reflux has improved significantly.
Elizabeth is now over 4 lbs and is getting rolls in her neck and legs.
She still needs oxygen due to "periodic breathing" and poor blood gases. Elizabeth is getting caffeine again, which stimulates her brain so she remembers to breathe. This is a step back since most preemies at her age do not need it.
Since she is getting the caffeine and continues to have bradycardic episodes, Elizabeth may need to go home on oxygen and monitors. Her parents are desperate for her to come home by Easter.

Hanging out at JB...

Elizabeth had a busy, challenging and very tiring week. On Wednesday she was transferred to Joseph Brant hospital, in their special care nursery. She had a difficult time settling and has had a couple of setbacks.
Her reflux has gotten worse since the transfer, requiring her feeds to be set back is needing oxygen continuously again. Once Elizabeth gets used to her environment (nurses, lights, etc.) and the nurses feel comfortable with her ups and downs (oxygen level) after she has been fed, hopefully she will be back to her normal self.
Her mom and dad have been quite concerned as they haven't been able to cuddle due to her unstable moments.
On Friday, Elizabeth and all other babies in the nursery had to be evacuated as sewage was coming out of the sinks and the cleanup crew did not wait until the babies were out before starting to vacuum. Her mom and dad pray that she does not get any infections from the disaster.
Despite all of this stress, Elizabeth is still gaining weight and is over 1600 grams. Her parents hope she can come home soon.

Elizabeth is a growing girl. She is now 1584 grams and has left her isolette to sleep in a cot.
Reflux is still a concern and is slowing her progress. She is breastfeeding with mom 3 times daily and is a pro at eating. She seems to eat too much which causes her heart rate to drop and she turns blue, but is able to recover on her own. Her mom thinks that she has her dad's appetite.
The transfer to St. Joseph hospital is on hold. If Elizabeth is big and strong enough when she is considered for transfer again, she may be able to go to Joseph Brant, which is much closer to her home.
Elizabeth had her eyes and ears checked this week. Both need closer and frequent checks as they are not up to norm yet. Her mom and dad hope that she will be home for Easter.

Can you guess my favourite colour?

What are you doing to me now?

Elizabeth is now over 3 lbs (1364 grams) and her skin is filling out. She has a double chin! She is a happy baby, rarely cries has big smiles and keeps herself busy by looking out of her isolette when she is awake.
She comes out for cuddles twice a day with her mom and dad who read her stories and sing songs (mom does most of the singing).
Reflux is still a problem for Elizabeth. During her last CPAP set-back she was again put on continuous feeds. During the week her doctors and nurses decreased changed the period of time to 1 hour (she is getting 18 ml. of milk over a period of 1 hour). She is also getting medication for the reflux, and it seems to be help. The nurses have said that she should outgrow this by 37 weeks.
Elizabeth still practices breastfeeding (with mom only) and loves it, but she gets tired. If she is able to tolerate feeds over .5 hours she will likely go to another hospital by the end of the week.

Sleeping beauty

Towards the end of last week and during the weekend Elizabeth felt pretty good and would often come out of her isolette for cuddles with her mom and dad.
Early Monday morning she had to go back on CPAP, because during the night her oxygen levels had dropped significantly (several times) and she did not respond well when her nurse increased her Low Flow. Her nurses and doctors suspect that it was a combination of fatigue and reflux that caused her to de-sat. After all, she is still only 34 weeks and should not be expected to do so much work (breathe, keep her own temp, digest food and even put up with her dad's singing).
For the last two days, Elizabeth has been crying. She looked extremely sad and disappointed because she had to have the CPAP mask on.
Her nurse tonight took the CPAP off and while Elizabeth's mom and dad were there she did pretty well on the Low Flow. She is also receiving medication for the reflux.
Elizabeth's last blood test show that her bone marrow is slowly waking up. This means that she will be able to produce her own hemoglobin, which she doesn't have very much of.

I hate CPAP!

Little Elizabeth was a little tired today. She is still about 6 weeks away from her original birth date (end of March), but she has come a long way. Every day she is maturing and gaining weight. Tonight she was 1215 grams and cuter than ever. Her dad gave her a bath, and Elizabeth cried at first but didn't complain too much once in the warm water.

She is still getting 15 to 16 ml of milk every 2 hours. The doctors have decided not to push her too much. Her belly is not mature and her reflux is still there. So, moving her to a different hospital is on hold for now too. Her mom has tried breast feeding several times for practice. Elizabeth seems to know what she is doing, which is a great sign.

Happy Valentines Day!

Elizabeth tipped the scale at 1108 grams, just prior to getting a bath from her mom and dad last night. She is catching up!
Her doctors and nurses have decided not to change her feeds for now, since she is refluxing every time she feeds. She does better when her mom or dad are holding her.
Elizabeth had her first eye exam on Thursday and the doctor did not seen anything of concern. She said that Elizabeth's retinas are still very immature. She will get another eye exam in four weeks.

Wait! Don't go away, I need my soother.

Elizabeth had a pretty good weekend. Today is her 52nd day at McMaster Hospital. She is able to sleep more since she received her last dose of DEX. She has slowly gaining the much needed weight. The chubbier the better! Her feeds were increased to 6.5 ccs per hour from 6. She is still being watched because she is getting reflux, which has become more frequent now that she is getting more milk. The reflux is causing her heart rate and oxygen level to drop below the norm for short periods of time. This is likely due to her premature stomach, which she will hopefully outgrow soon.
She is still on Low Flow but is getting minimal support.
The doctors have told us that soon she may be transferred to another hospital as she will not meed as much care as before. They have assured us that this will not happen unless Elizabeth is able to breathe on her own and her stomach has matured so she can tolerate her feeds.

Elizabeth's mom and dad were excited to find this certificate next to her bed.

Kangaroo time with mom.

Today was Elizabeth's last day on DEX. She will continue to get another kind of medication which is inhaled to help her transition. Hopefully the medications will work as expected and she will not require CPAP again. She is still on the "Low Flow".
Yesterday Elizabeth had another blood transfusion because she was very pale and her pulse was dropping at times. Now she is pink again.
Today she weighted 915 grams (over 2 lbs) and is 33.5 centimeters (13.2 inches) long.
She is tolerating her feeds, which are fortified with extra calories and vitamins to help with the weight gain.
Elizabeth got her first bath in the "big girl" tub and she loved it, but it tired her out.
Her favourite toy is the soother. She works very hard at keeping it in, but when it falls out her backup plan is to scream until the big people put it back in.

Elizabeth has been doing much better in the last few days. Her breathing has improved significantly since she started the round of DEX. She was even taken off the "Low Flow" for a couple of hours and was breathing all by her self. She will continue to get the steroid for three more days. The doctors have warned us that it is very common for preemies to need some help after the DEX is finished.
Elizabeth is very alert. She does not sleep as much as she should be. Every time her parents come in to visit, they just see two big eyes peering out of her isollette. Her mom and dad have repeatedly tried to tell her that she needs to sleep so she will grow, but little Elizabeth won't listen.
Her measured weight last night was 873 grams, which is higher than the day before. Elizabeth has been losing weight since she started the DEX.

"Quick! Take me home, while the nurses aren't watching!"

Elizabeth has been doing well. The steroids are working and she's been able to go on "LowFlow", which gives her a small amount of oxygen (smaller than with CPAP).
Doctors from General surgery removed her IV line as she no longer needed it. She is on full feeds at 5.5 ccs per hour. Her milk is spiked with extra calories to help her gain weight.
Her primary nurse, DJ gave Elizabeth her first bath at 9 o'clock tonite. Elizabeth was confused at first but seemed to enjoy it.
Now that her IV line is out, she is able to wear clothes. Today she was sporting a very fashionable lavender hat, white booties and a pink undershirt.

"My first bath (neonatal style)."

Posing for an X-ray.

The last three days have been very rough for little Elizabeth. On Wednesday night she was re-intubated because of a small collapse in her right lung. Her belly was also filled with air, which compressed her lungs, so that she couldn't take deep breaths. This is a side effect of being on the CPAP.
The results of her belly ultrasound showed that her liver was O.K.
Elizabeth is still being fed, but her feeding routine has changed. She is now fed continuously. The amount of milk that she was getting previously every two hours was too much and she was getting reflux. The reflux seemed to make her heart reate and breathing decrease. So far this change has not helped. Her heart rate and breathing still fluctuate.
On Friday, she was extubated and put back on CPAP.
Due to the infection in her nose, the nurses frequently have to suction her, so that she is able to breathe. Elizabeth doesn't like that and expresses her dislike by pulling out her suction catheter. Her cries are getting noticeably louder.
Today, Elizabeth's belly was filled with air again and she seemed very uncomfortable. Her mom tried to settle her by putting a warm mini-IV bag (normally used to give medication) on her belly. This seemed to help and she was able to sleep for a while.
To help her lung development, a round of steroids (DEX) were started this afternoon and will continue for the next seven to ten days. The doctors are hopeful that the medication will start working soon. Two side effects of DEX are higher chance of developing Cerebral Palsy and no weight gain (while on the medication). If the medication works as expected, Elizabeth will be able to come off the CPAP and breathe on her own sooner.
Mom and dad can't wait until Elizabeth is feeling better and starts to gain weight...

"This is what I look like today without the CPAP mask."

Elizabeth is a growing girl. She is getting 11 ccs every 2 hours. At 895 grams, she is 165 grams above her birth weight. Some of the weight gain is due to fluid that she has retained. She was given medication to make her pee more and get rid of the fluid.
The doctors and nurses are concerned about her liver. A blood test done a couple of days ago showed that the level of bilirubin (the cause of jaundice) in her blood was higher than normal. Elizabeth is now too old for newborn jaundice and that is the concern. The doctors are reviewing the results of a belly ultrasound that was done earlier in the day and hopefully will be able to determine the reason for this soon.
Mom and dad were able to hold Elizabeth for a couple of hours today too and even got to kiss her on the cheek for the first time.

It's 13:37 on Sunday afternoon and Elizabeth has the hick-ups, but she doesn't seem too bothered. She is now getting 9 ccs and is slowly starting to gain weight. She was 820 grams at 9 o'clock last night.
She is still on CPAP!
On Friday she was very pale and sleepy. She was getting a lot of secretions from her nose and had to be suctioned almost every half hour. Yesterday her doctor ordered a blood transfusion. Luckily her dad's blood was available, so Elizabeth got 12 cc's. Within minutes of her transfusion her colour improved. She is also getting antibiotics that seems to be helping with the infection. Her secretions have decreased, making it easier for her to breathe.

Elizabeth has been on CPAP for over 48 hours, which a significant improvement. The last x-ray of her lungs revealed some "haziness", which is making it a little more difficult for her to breathe. The nurses and doctors are watching her closely.
She still has the infection in her nose despite the round of antibiotics, but that does not appear to be bothering her too much.
Her feeds were increased to 6 cc every 2 hours and she seems to be handling that reasonably well (she has spit some up).

"Check out my custom exhaust!"

Elizabeth was extubated this afternoon and seems to be feeling well. The ENT team had a look down her trachea and saw some irritation. She also had a few apnia spells during which her heart rate dropped below 100, but she was able to come up on her own, so her nurse was not too concerned. This could be due to the extubation earlier or being fed (preemies get reflux). Her feeding tube is through her mouth instead of her little nose and that's too tempting for her and she is playing with it.
Elizabeth is getting 5 cc's of milk and seems to be enjoying it. She is sporting a very small Pampers diaper that makes her look like a sumo wrestler.
She settled herself to sleep around 20:45, but would occasionally chew on the feeding tube.

Elizabeth is 28 weeks and 5 days old and likes mom's milk. She has gained an ounce in the last 24 hours, which means that she is that much stronger. The doctors were getting ready to extubate her today, but didn't because she needed to be examined by an ENT. If her blood gases are also good tomorrow she will go on CPAP.
All of the tests that she got done last week came back negative (for infection) except for one, which showed that some bacteria was present in her nose. She is receiving antibiotics that seem to be helping her.
Her nurse today said that dad will be able to hold her in the afternoon. Dad held her for an hour and she fell asleep. Her grandma and granpa came to visit for a while too.

Elizabeth had a good day today. She slept on and off while mom was there. Every time she wakes up ,she opens her eyes, looks around and makes funny faces. The nurse said that when babies start feeding they are more relaxed and feel more content. She is now getting 2 ml every 2 hours, and as a result she is getting less IV food (TPN).
Elizabeth still has the breathing tube, which may be taken out on Monday if she is feeling well. The ENT (ear, nose and throat) doctor will check her breathing passages first, because when she was intubated last time, the doctor notices some scar tissue in the back of her throat. It is possible for the scar tissue to obstruct her breathing and she will have to go back on the vent.
Mom and Elizabeth had another kangaroo session for almost two hours.

"I love my soother!"

Elizabeth was feeling much better today. Her eyes were open most of the afternoon and she is starting to wiggle around. The soother is Elizabeth's favourite. She kept it in place with her fist as she chewed and sucked on it pretty much for the entire day.

Because she was so sick yesterday they stopped feeding her and may start again tomorrow. It all depends on how she is feeling. Her weight today was 745 g., which is slightly above her birth weight (730 g.).

Elizabeth met her grandpa Malcolm and her aunt Katy, who wanted to take her home, for the first time today.

On Tuesday Elizabeth experienced a small setback (sadly, it was expected) as she had to be intubated. She was trying very hard and managed to be vent-free for nearly 24 hours.

Today is grandpa Malcolm's birthday and he turned 58.

Elizabeth had another tough day. She is very tired and pale, barely able to open her eyes or move her arms and tiny feet. She is definitely not her energetic self and is probably septic, which means that she has some kind of infection in her blood. This is again very common for preemies and is treated with antibiotics. Elizabeth's nurses and doctors were quick to notice that she was not feeling well and ordered the tests immediately. They gave her the first dose of antibiotics around 16:00. To make sure the infection hadn't spread to her brain her nurses had to do a lumbar puncture to test the fluid in her brain. Initial results were promising, but it takes up to three days for the rest of the results to come back. Elizabeth is getting some blood right now, so she can hopefully feel better in the morning. She is in pretty good hands.

Elizabeth had a busy day today. She has come a long way since the surgery. With every day that goes by mom and dad are more and more convinced that it was the right decision. She is off the ventilator and seems to be handling it reasonably well. She has to do a lot more work on her own and may not last very long. Elizabeth also had some of mom's milk today (at a rate of 1 cc every 4 hours), and at the 20:00 diaper check things looked promising.

Mom spent most of the day at the hospital, while dad "fixed" stuff around the house. Earlier today, Elizabeth and mom had a "kangaroo care" session. For almost an hour and a half Elizabeth lay on her mom's chest and even had a snooze. Apparently babies can hear the heart beat of their parent and find it comforting. Studies have shown that skin to skin contact helps parent/child bonding and generally preemies do much better.

It's 18:30 and Elizabeth is doing O.K. Her stats are good and her vent is set to 20 breaths per minute at 23%. She wasn't stable enough to go on CPAP today (i.e., come off the ventilator), but the staff are hopeful that she can do that tomorrow as her gases this evening were good. She also met grandma (Elizabeth) and grandpa (Boris) for the first time but kept her eyes closed.

Waking up

In the afternoon Elizabeth was active, moving her arms and wiggling her feet. Her big eyes were wide open. The nurse said that she had been swinging, but her blood gases came back good, so the RT will continue to reduce her respitory rate. At 12:50 she had another "brady" spell as her heart rate and O2 concentration dropped significantly (to 90 and 69). A sign of the uncertain and difficult times ahead. The nurse explained that this will be part of her normal routine, and joked that Elizabeth will teach mom and dad to be patient. Within a few minutes Elizabeth was back within range. Her breathing rate was set to 40 at 21% (i.e., room air). The doctor ordered a loading dose of coffeine to prepare her for coming off the ventilator sometime tomorrow.
However, chances are Elizabeth will not last, but it's worth the risk since it is better for her lungs when she is breathing on her own.

When dad arrived, Elizabeth was awake and was trying to figure out how to stuff her right arm in her mouth. Dad gave her the soother. The nurse said she looked and acted much better than earlier in the morning when her blood pressure had dropped and the respirtory therapist (RT) increased the rate of her breathing to 50 from yesterday's 40. Elizabeth was still breathing room air. Her nurse attributed this behaviour to a "preemie moment".
At 10:40 the RT dropped her breathing rate to 45. The plan is to gradually lower this number, otherwise the O2 concentration will likely stay above 94 (desired rate is 84 to 94). A hi O2 concentration is dangerous for her eyes, as she may develop a condition called ROP.
Overall her condition is currently stable. The dramatic changes in her stats (heart rate, blood pressure, O2 and CO2 concentration, etc.) is called "swinginq" and is very common for preemies, especially during post-OP. The trick is (what seems to be an impossible task) to find a combination of settings on the ventilator that will maintain her stats within the desired levels.
Elizabeth is still getting Morphine to keep her comfortable (at a rate of 6 micrograms per kg per hour). The usual rate is 20 microg/kg/hr for most babies, and 30 is also common. This rate will gradually be lowered to 0 by the end of the day as long as she can tolerate it. A good sign is that she is peeing, which means that her kidneys seem to be O.K. Hopefully Elizabeth will get some of mom's milk by Monday. This will give her the much needed nutrition to grow and for her organs to mature.
The ups and downs of her slow recovery will continue (to worry mom and dad) for several weeks. Aparently that's what preemies do.