Halloween

Mommy kangarooed with Daniel today and after fidgeting a bit, he settled down and slept. Both babies had eye exams today which revealed immature vessels in the right eyes and stage 1 retinopathy in the left eyes. The eye doctor will continue to watch as their eye development progresses, but right now the issues appear to be mild and are expected in premature babies. They will get examined weekly for follow ups.

Sofia was not happy on the steroids today and had more desats, but they were still able to wean her again and her oxygen is in the 30's - which is much better than before the steroids. If all goes well, they hope to extubate this weekend.

Both Sofia and Daniel are now at least 3 pounds!

8 Weeks Old

The doctors are happy that the steroids are allowing them to wean the ventilator settings for Sofia today. They will wean her as she tolerates it. Mommy kangarooed with her and she did so well - without a single desat.

Daniel will now get lasix every day due to the fluid buildup, but other than being a bit puffy, he did well today - staying within his oxygen saturation range over 80% of the time.

Second Try

Sofia is getting a second course of steroids to hopefully improve her lungs and wean her further on the vent. The last course coincided with her pneumonia, so we are hoping this course is as effective as it was for Daniel. Sofia got a blood transfusion today and has been needing her diuretics because she is quite puffy again. The steroids should act as a diuretic as well.

Daniel was happy today and his pressure was weaned on his NIPPV. Both babies were started on feeds every 3 hours, which is apparently a big step and they tolerated it well.

Mommy was unable to visit the babies yesterday because she was in a car accident on the way to the hospital. Luckily, she only managed to bruise her knee and nose, but the car is totaled. Thanks to her Hertz points from traveling, she is renting a car for free this week to visit the babies.

Kangaroo with Daniel

Mommy kangarooed with Daniel today for the first time on his NIPPV. He did very well once he settled down. He enjoyed his purple pacifier too. Afterwards, his nurse put him next to his lamb to sleep. Daddy held Sofia in a blanket and she also seemed happy in his arms, with few desats.

Today was a day without lasix for both babies and the doctors are going to see how they do without diuretics every other day. Daniel was weaned on the ventilator settings and Sofia has been hanging out on the same settings over the past couple days. Her oxygen was a bit lower overnight and today.

Sunday Visit

Mommy kangarooed with Sofia and Daddy held Daniel today. Daniel was crying enough so that we heard him when he was outside of his isolette. Sofia got a new isolette today after managing to poop all over. Even though the babies are small they can still make big messes.

Aunt Becky and Uncle Chris visited today too on their way back to Boston. The babies are much bigger than when they visited last.

Double Duty

Today Mommy held Daniel while Daddy held Sofia. Both weigh about 2lbs 10 oz today, and are gaining regularly. Extra fat was added to Sofia's regimen so that, like Daniel, she is getting more calories. Sofia was up on her oxygen and settings today but we are hoping the overall trend improves from last week. Daniel is still doing well on the NIPPV and enjoying his pacifier more now.

Sleepy Friday

The babies slept this afternoon during the visit. The pressure on the
ventilator was weaned for both of them but Sofia's was increased again
when her oxygen requirement went up. The X-ray showed an area with a
slight collapse on the left side of her lungs and the pressure helps
to keep the lungs more inflated.

Today the doctor changed the strategy on the diuertics, opting for the
lasix which will not cause them to lose as much sodium. Because the
sodium is important for growth, this may help them to maximize their
weight gain. After a few days they will evaluate the effectiveness of
regular lasix and check their electrolytes.

7 Weeks Old

The babies are seven weeks old today and both are now officially at least 2.5 pounds. The nurses are remarking on how "big" they are getting. They are on 13cc's of food every two hours. Daniel and Sofia are now getting the same mixture of breast milk, Neosure powder and human milk fortifier. Sofia is an ounce larger than Daniel, but about an inch shorter.

Sofia and Daniel also both have dry skin thanks to Mommy's genes. Daddy put Eucerin cream on them both today.

The doctors are continuing to wean the ventilator settings for both babies as they tolerate it. We are glad to see that Sofia seems to have recovered from the possible infection and fluid retention that gave her trouble last week.

Weaning Again

Sofia's and Daniel's ventilators were both weaned today. Mommy kangarooed with Sofia and sang to her. She did much better than last time, with only one desat. Her new trick is moving her head around more, now that her neck muscles are stronger. Daniel practiced with his pacifier again today. Here it is being propped up by his the lamb in his isolette. Sofia's picture shows her with her hand over her face, which she likes to do if her hands are free.

Too Cute

Sofia was dressed in a tiny pink onesie that said "Hug Me" after her bath today. Her clean hair was fuzzier and looks like it has blond streaks in it. She is doing better today with less secretions and fluid in her lungs. They were able to wean her ventilator a bit since her blood gas was good.

Daniel also had a good blood gas so they weaned the rate on his NIPPV. His oxygen saturation stays fairly stable and only dips if he manages to get the prongs out of his nose. He was working on getting used to a pacifier today. He will suck on it but needs something to prop it so that it doesn't fall out of his mouth.

Both babies are back to feeds every two hours, instead of continuous feedings, which will help get their tummies used to being full and empty, and prepare them for bottle feedings down the road.

Stable Sunday

The babies both seems to be stable with Sofia remaining on her higher settings over the past few days, and Daniel doing well on the NIPPV. Mommy held Sofia today while Daddy cuddled Daniel. Sofia's IV antibiotics were discontinued but she will still get the inhaled antibiotics for now. It was Daniel's turn to receive a blood transfusion today. As of last night's weigh in, Daniel is 1020 grams and Sofia is 1080. Here are the latest pictures:

Saturday's Story

Daddy cuddled with Sofia and she seemed to be doing a bit better today with just a few less desats. The CBC showed that she needed a blood transfusion. Hopefully this will help her to better oxygenate her blood. The most recent culture of her secretions resulted in less of the bacteria found prior, so the antibiotics are possibly beginning to work for her. Sofia is still looking puffy and quite bigger than Daniel due to the fluid retention.

Both babies are now on 6 cc's of milk every hour. Daniel was happy and looking around today. His rate on the ventilator was lowered and he no longer seems to always be pulling at the tubes in his nose. He does like to hold onto the feeding tubes near his face though.

Weight Gain

The doctors started Sofia on a nebulizer antibiotic as well to see if
that will help her improve. So far, her oxygen needs have been
increasing. Although the area of possible pneumonia in her lungs
seemed better on the X-ray, it also showed more lung problems overall
- the doctors consider it part of her chronic lung disease. She has
also gained a lot of fluid weight and is now 2.5 pounds and looking
puffy. Both Sofia and Daniel were started on chronic diuertics again
to help with the problem. We are told this is a normal preemie issue.
Daniel is 2 pounds 4 ounces today. Mommy held him in a blanket
today, which he tolerated very well on the NIPPV.

6 Weeks Old

Sofia and Daniel both got a dose of lasix today since they each gained 50 grams when weighed last night. Sofia is on the antibiotics, but we aren't seeing much improvement yet. She had a number of desats today and still had a lot of secretions that needed to be suctioned out of her breathing tube. Daniel seemed happy in his new outfit and has adjusted to the NIPPV - he is no longer trying to take it out of his nose when his hands are free. He does, however, try to grab onto tubes or fingers, if they are near his face. Both babies got to wear clothes today. Mommy will have to buy outfits for them soon when they are just a bit bigger.

Pneumonia?

Late last night we got a call from the hospital about Sofia. Her
cultures showed the presence of certain bacteria and a chest x-ray
showed a questionable area. In case of pneumonia, and after
consulting with the infectious disease team at the hospital, the
doctors started Sofia on antibiotics. Although they believe the
infection is localized to her lungs, it is certainly a concern for us.
Her ventilator rate and pressure was increased yet again, and she has
been needing more oxygen. Hopefully in the next couple days we will
see an improvement due to the antibiotics. Other than her breathing
issues, she does not have other signs of infection. They are doing
another blood culture and will get another secretion culture on
Friday.

Sofia did get to wear her first outfit today!

Daniel is still doing well on the NIPPV. Now that he does not have
the tube, we should soon hear his cries. Right now they are squeaky
noises. It sounds funny to long to hear your child cry but it will be
a welcome sound.

Increasing Feeds

Today the feeds for both babies were increased to 5.5 cc's per hour since they have grown a bit. Daniel, it was discovered, has developed a hernia. This is a common preemie problem as the intestines protrude into places they shouldn't because the abdominal muscles aren't fully developed. He will need surgery before he comes home to repair it. Usually, the doctors wait until the baby is at least 2 kilos, unless the hernia becomes a problem.

Sofia's rate on the ventilator was increased back up today. She is having a lot of secretions and the doctor's took samples to test for any possible cold-like infections, or an infection in the tube itself. The secretions may also just be due to the irritation caused by the tube itself. Results on the tests are still pending. She was also given lasix today since her face is puffy and it should help reduce the fluid buildup.

Here are today's pictures. Daniel no longer has to wear a pink hat - his night nurse found a new one for him last night.

Monday Visit

Sofia improved today and her vent settings were weaned to 22. She had started the day at 26. Mommy tried kangaroo with her today, but she wasn't very happy about it so she had to go back into her isolette.

Daniel remains extubated and continued to do well today. For both babies, their steroid course was over yesterday. Daniel gained weight and is now 940 grams. Sofia is 950. (Both are over 2 lbs now).

The Daily Rollercoaster

To help give a better understanding of the daily rollercoaster ride in the NICU, below is an image of the monitors that measure heart rates, oxygen saturation and respiratory rates. When the oxygen level dips below 84, a yellow alarm will blink and sound. If it continues after a period to be below that number, a red alarm will blink and sound - with more urgency. This is the "desat" and the nurses will either wait to see if the babies can increase the numbers themselves, turn up their oxygen percent on the ventilator, or give them some manual breaths through a button on the ventilator. Watching the constant ups and downs, and hearing all the dings of the machines can be worrying. Often just by changing a diaper, the oxygen saturation will dip when the baby gets agitated. The machine will also alert you if the oxygen level is too high and can be turned down. Alarms will also sound for heart rates that are too high (often from a dose of albuterol) or too low (which sometimes accompanies apnea) although this happens more rarely. We see the ups and downs constantly and have learned to try and comfort our babies, not touch them, or go ahead and put our hands into the isolette depending on their numbers at the moment.

Still Going

Daniel is still extubated and going strong. He had some worrying
apnea episodes overnight but was much better today. His bloodwork and
other tests were normal. He seems to be getting used to his new
setup. His face appears to be a different shape now that we can see
his cute little mouth. The NIPPV does cause more slobbering however.
It can also cause extra air in the tummy so the nurse put a second OG
tube down his mouth to help vent the air.

Sofia required the ventilator rate and pressure to be increased again
today. The doctors ordered bloodwork which showed that her hematocrit
was low so she received a blood transfusion. Preemies have a harder
time making their own blood, and of course some of the blood is
extracted daily for testing. They also ordered a blood culture to
check for a possible infection. But some of the symptoms that show
she's not herself today can also be due to the steroids. So far they
have not started any antibiotics and Sofia seemed to be doing better
once she got the blood.

Daniel's Turn

It was Daniel's turn to be extubated today. He handled it really well and his last blood gas (which measures the level of oxygen and carbon dioxide in the blood) was great. He seems to have had a good reaction to the steroids. Unfortunately, he got stuck wearing a pink hat since that is the size at the hospital that will fit him. Once he's a bit bigger, he can switch to blue.

Sofia on the other hand is up on her ventilator settings more than expected and her blood gases have not been where they need to be. It could be that she is not reacting well to the steroids. The doctors have also added another fortifier to her milk to give her additional calories so that she will gain more weight.

Here are the pictures from today's visit with Mommy, Daddy and Grandmommie.

5 Weeks Old

It's hard to believe that Daniel and Sofia are 5 weeks old. Both were weaned today on the ventilator settings and are requiring less oxygen than yesterday so there is certainly an improvement. Both are also now over 2 pounds. Again, the recent weight gain is probably fluid retention and the doctors will evaluate whether to give them diuretics. Sofia is 960 grams (2 lbs 2 oz) and Daniel is 1010 grams (2 lbs 3 oz). Mommy kangarooed with Sofia today.

Starting Steroids

The doctors have recommended a 5 day course of steroids for both babies to help their lungs to improve. Primarily, the steroids are anti-inflammatory and should help with the fluid in the lungs and give them both a boost so that they can be weaned off the ventilator. They received their first dose today.

Mommy cuddled with Daniel today and held him for a while in a blanket. Sofia held onto Mommy's pinkie finger tightly (see picture below) as her nurse extracted a little blood and checked her vitals. She didn't let go for quite a while.

Daniel is now at 880 grams, and Sofia is a whopping 910 grams but most of her weight gain was probably due to fluid since it was unusually high from yesterday's weigh in at 860.

Back on the tube

Unfortunately Sofia was breathing too hard and had to go back on the tube. Docs still think they can try again in a few days. But for now, she is more comfortable.

Extubation

Today, they extubated Sofia. The doctors and nurses are still watching her to see how she progresses. Below is a video of her on the NIPPV (Non-invasive Positive Pressure Ventilation) and sucking on a pacifier. We are anxious and calling the hospital continually to check on how she's doing. Keep going Sofia!

Daniel's pressure was also weaned and he had a pretty calm day overall. Both kids are still off of the diuretics, which is making them pee less and is another thing the nurses are watching. Their electrolytes will be checked tomorrow to see if their sodium levels allow more diuretics or not.

Slowly Weaning the Vent

Sofia and Daniel were going both high and low on their oxygen saturation today. The doctors are slowly trying to wean Sofia. When we left the hospital, she was down another notch. The diuretics were stopped today for both kids because of their low sodium. The nurses are also feeding them continuously now (5cc's every hour) so that a sudden full belly doesn't cause a desat. They use a machine to do this that is hooked up to the feeding tube in their mouths.

The babies are both showing more expressions in their faces now. We can even tell when they are crying (even though they cannot make much noise) and we wish we could comfort them better. Daniel was quite unhappy at one point today - most likely due to a dirty diaper and a wish to face the other direction. He was less red in the face once his nurse repositioned him and changed him.

Mommy arrived just in time today to change two poopy diapers. They are really enjoying the milk I guess. Here are two pictures from today.

Quiet Day

They were able to wean Sofia a little on her pressure down to 19/6. Both kids are doing great on feeds and seem active. Both are responding well to their diuretics and peeing a lot! But they still have a bit to go on their lungs before they can try extubating again. Daniel is at 900gm, Sofia at 860gm so both are growing!

Here are some videos of Sofia and Daniel saying hi from a few days ago.





We had some of our good friends up to visit us this weekend and last and it was great to see them!

And in completely other news a cat appeared at our back door yesterday looking for food and a place out of the rain. We've given it some shelter while we look for whomever owns it (and someone does given that the cat seems well taken care of).

Daniel's head ultrasound is clean

That means that there is no apparent white matter damage for either child, which is great news! It doesn't mean we're fully out of the woods in that dept (nothing ever does!), but it is good to hear.

Also it is time for both kids to get their first HepB vaccination. I was surprised to hear that they get them (even without fully developed immune systems) and at the same dosage at a regular child. But after checking around it seems like it does still work and actually can help stimulate immune system development without adverse consequence.

And they both continue to struggle a bit on their lungs. Sofia's lungs are wet and her pressure is back up to 20/6. Daniel is starting on his chronic oral diuretics today since his sodium is better and hopefully that'll work. Getting off the vent is their next major priority and the sooner the better as the vents themselves damage their lungs over time. Both kids are grown back from their recent down day. Sofia at 850gm and Daniel at 870gm.

Premature Lungs

Daniel is having a tough time with his lungs lately. Primarily, it is the fluid that keeps building up and causing his oxygen saturation to drop. His vent settings are not high and the good news is that his lungs are well expanded, but the doctors are recommending more aggressive treatment with diuretics for now. It is part of the chronic lung disease that very premature babies develop. Hopefully, the diuretics will have a better effect.

Daniel's milk is now fully fortified, and they have also added some fat as well, to give him extra calories without giving him more liquids.

Sofia is mostly back to her feisty self and pulled her feeding tube out today, frustrating the nurses. She loves to keep her hands near her face, as in the picture below. Yesterday, Daniel discovered his nose and kept hold of it for a while.

Four Weeks Old

Both babies are now IV free and on full feeds of mom's milk. They
will start fortifying Sofia's meals tomorrow.

Today was a better breathing day for both. They received laseks again
which seemed to help the fluid in their lungs. Sofia tolerated
another wean on the ventilator settings. Daniel's desats were fewer
and less severe. He seemed happy at his current settings. And both
of them breathed more frequently on their own today.

Mommy kangarooed with Sofia for a while today too. Happy 4 weeks old!

Desat Day

Today Daniel had quite a few desats and they were lower than they had
been for about a week. The doctors did give him laseks to try to get
rid of some of the fluid in his lungs and also repositioned his
breathing tube. They increased his ventilator rate to 22. He seems
to be doing better now. He is still doing well with the feeding and
is now 1lb 15 oz.

Sofia is up to 7ccs on her feeds and should be at full feeds by
tomorrow. This means that her IV can come out too. She is 1lb 13 oz.
She did have desats today as well but not as dramatically. The
nurses like to say that they compete. They did reduce her pressure on
the ventilator to 18. Daddy got to hold her for the first time today!