A better day

She continues her slow climb back uphill.

They're keeping a pretty close eye on her. Those clear plastic things on her in this photo are for blood gas sensors. They can monitor O2 and C02 levels in real time. These are a bit finicky and can suddenly go out of calibration, so they're backed up with frequent blood tests.

A turn for the worse

Elizabeth has not been doing well this week.

We were on our way to the General and almost there when we got a call from the doctor on duty.Mum was talking while I was driving, but it didn't sound very good from my end.

Elizabeth had been deteriorating all day. They had stopped her feeds. She had regressed to the point where she was on 100% oxygen and the HFO (High Frequency Oscillating) ventilator.

The HFO keeps the lungs inflated and does rapid in-and-out breaths as a treatment for PIE (Pulmonary Interstitial Emphysema). PIE is a condition where air has leaked into the wrong side of the lungs. This can actually be caused from being on a ventilator, as apparently they're hard on the little lungs. The RTs (Respitory Therapists) walk a fine line. Too much or too little ventilation, and there's trouble.

So, she'd been given steroids to reduce lung inflamation, and she was on mild sedation due to the HFO. In addition, her hemoglobin levels were low and they were treating it as sepsis (a blood infection) and had given her antibiotics and a blood transfusion. (a little one, of only 15ml... but still, the poor kid had IVs everywhere)


Basically, they'd done everything they could for her, and they were telling us that it didn't look very good.


So I had to have a good talking to her. I held her little hand, apologized for not being there for a few days and promised I'd do better. I told her the important rules of the house. ("When Mummy's unhappy, everybody is unhappy") I'm not sure, I might also have promised her a pony...

Anyway, we were there a few hours, and while we were there, her blood gas O2 levels crept up, her C02 levels crept down to an acceptable level, and things seemed to settle down.

Maybe it was the transfusion, maybe it was me holding her hand, maybe it was the pony. But she had a good night.

Moved one room over

I found out today they have moved Elizabeth from one room to another. She's got an obstructed view, but she hasn't complained.

Her blood gas was not as good today. The ventilator is doing 35 breaths/min.

Her weight today is 1000g (dropped 61g). This likely a result of a different scale since she now has to be taken out of the isolette to be weighted.

Echo was done today, likely to get results later.

Quick Update

She is still on the ventilator at a rate of 33 breaths/min and 25-30% oxygen. Her weight is 1061g. The x-ray of her bowel is looking better but still holding off the feeds. They are going to do a repeat echo on her heart either Tuesday or Wednesday. (note: no one can hear a murmur anymore).

Upgrading Isolettes

When I called this morning, she was getting 37 breaths/min from the ventilator. They did another x-ray of her bowel and it looked better but are still holding off feeds. They will let the doctors on rounds tomorrow decide.

I decide to inquire if a brain scan was done in the first few days to check for brain bleeds. Elizabeth's came back normal.

When I went in to visit this afternoon, I got to change her diaper, take her temperature, move the O2 sensor from her left foot to the right and do her mouth care.

They are upgrading her isolette tonight since she is over 1kg (1089g), she no longer needs the cadillac version which is usually reserved for the smaller sicker babies.

Oh, and Grampie got a visit today.

Holding her own

Her weight today is 1033g (not really any change) and still no feeds. She had 2 bowl movements since yesterday which is a good sign maybe they will restart her feeds soon. Note she is getting food via intravenous called TPN ( total parenteral nutrition). it contains protein, fat, sugar, vitamins and minerals.

Her blood gas is better ( this measures the oxygen and the carbon dioxide in the blood). The ventilator is set to 40 breaths/min and she is getting 26% oxygen (room air is 21%).

PDA confirmed

Her weight today is 1032g. She not getting any feeds. They did another x-ray of her bowel and it didn't look good. They are also giving her lasik (diurectic) because they think she is retaining fluid. An echo was done at noon and it confirmed she has a PDA. She is being given medication (indomethacin) that helps to close the valve.

Heart problem?

Her weight is now 1011g and her feeds were at 6cc every 3 hours but now have been stopped since her system did not seem to like them. X-ray and cultures were done to check on things. The ventilator is now doing 45 breaths/min for her.

An echo (echocardiogram) will done on her heart tomorrow since her breathing is getting worse and sometimes the nurses and doctors can hear a murmur. They are suspecting that PDA (Patent Ductus Arteriosus). This is a valve in the heart that would normally close in a newborn baby after it is born, but sometimes in preemies it doesn't always close.

Another update

Her feeds are now 4cc every 3hours and her feeds will be incremented 1cc every 9 hours. Her current weight is 968g. The ventilator is set to 40 breaths a minute.

Update

Elizabeth is getting 2cc evry 3hours for feeds. She is still on the ventilator and is likely to be on it for a week, I'm told.

First Hold

Mom was in to visit today and was lucky enough to be there when they changed the incubator (which they do every week). So Mom got to hold Elizabeth while they were setting everything up. Elizabeth now weighs 901g, and she seemed very tired today from all the handling the night before.

A name is chosen and a new era begins

We finally picked a name! Her name is Elizabeth Marie.

We decided on the first name first. We told Katie, but we told her it was still a secret from anyone else. She managed to keep this secret for a whole weekend until we told the rest of the family.

Our kids so far had been given good, strong names, taken from the works of William Shakespeare. We looked for another good, strong name, but the pickin's are a bit slim for girls names. (though Titania had a certain ironic appeal for a wee baby...) But what better, stronger name than the name of Shakespeares Queen? It certainly fit the theme, and had the bonus of having been present in both sides of the family.

The second name gave us more trouble than the first. We narrowed it down and finally agreed on Marie. This should have been all figured out before she was born, but we didn't have the time we thought we would.

So there you have it, the new Elizabethan Era has begun.

(P.S. Only her Dad is allowed to call her "Lizzie May" :-) )

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Elizabeth is doing okay today. She is on the bipap machine. She has had no feeds since midnight but they plan to restart at 1cc every 3 hrs at 6pm.

We got a call at 9:50pm that they had to intubate her again. They found fluid on her left lung and part of it had collapsed. She is still breathing room air.

Home from the hospital for half my girls

I brought Mum home from the hospital today. She's recovering well.

It seemed a bit strange to bring her home from the hospital without a baby, but she's in good hands, and she seems to be doing well.

They've warned us that preemies can have a 'honeymoon' period, and that we can expect some ups and downs in the future.

A visit from big sister

Big sister got to visit today to get introduced to little sister. We thought she had gotten over her cold, but I made her wear a mask just to be safe.

A baby is born

Our new baby was born at 11:12pm weighing 936g and 35cm at 26 weeks gestation (14 weeks early). She arrived with a little cry and her apgars were 9 and 9. (after 1 and 5 minutes, respectively) We heard her wailing in the other room while they stuck tubes into her.

Very good considering how early she was.