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.