Canula Free

At our Sunday visit, Mommy and Daddy gave Daniel a bath. Today, the doctors took him off the nasal canula and so far, he is breathing completely on his own. He is also going to an open crib because he is doing better at regulating his temperature.

So far, the cultures are all negative for Sofia and it looks like she does not have an infection. The ventilator settings were weaned today and Daddy rocked her.

Ear Infection?

We got a call last night that Sofia may have an ear infection since some drainage leaked out. They cultured her blood, spinal fluid and ear discharge but so far, nothing has grown in the lab. She was started on antibiotics in case of infection. She also received a blood transfusion today because her hematocrit was slightly low.

The doctors decided to remove the Neosure from mom's milk for both babies because they are gaining a lot of weight lately and the extra carbohydrates cause the body to produce CO2. The milk will still be fortified with Human Milk Fortifier and they are still receiving the extra doses of fat in the form of oil.

Mommy gave Daniel a bottle today. He was spitting up before and after the feeding, probably because he had to poop - the Neosure can cause the babies to get a bit constipated. Hopefully, things will be moving better without it.

Friday Fun

Mommy and Sofia's nurse gave her a much needed bath today. It was a bit difficult with her breathing tubes, but Sofia really seemed to like it. She was much calmer today - not breathing as fast or having as many desats.

Daniel seemed happy wearing his dragon onesie, and Mommy gave him a bottle. He needs to relearn how to drink from it so we took it slow. The occupational therapist evaluated him today and said that he's on track developmentally.

Thanks to Daddy and Grandaddy who stayed home today to build cribs and the changing table for the nursery!

Happy Thanksgiving

Grandmommie and Grandaddy visited Sofia and Daniel for Thanksgiving. Daniel and Sofia hung out in their turkey day onesies. Sofia was upset for a while - possibly because they had weaned her pressure that morning. Daniel was sleepy and still recovering, but Daddy held him for a while.

An Early Thanksgiving

Daniel was extubated this morning and seemed to be doing well on his nasal canula again. He is getting Tylenol for any pain. This is a picture of him sleeping today. We are so thankful he is strong and resilient.

Sofia had another good blood gas so they weaned the pressure on the ventilator again. Hopefully, this trend will continue. She seems to like the new alternative to albuterol that she was put on - it doesn't cause her heart to race. Mommy rocked her today and told her all about turkey day tomorrow.

The Latest

Daniel's eye surgery went well and we will know in a few weeks when it
heals if it helped his eye situation. He is still intubated but on
room air and they are weaning the settings overnight. Daniel was very
sleepy from the medication during our visit and is still groggy. As
he increasingly wakes up, he should be able to breathe more on his
own.

Sofia had a good blood gas this morning so they weaned her ventilator
again. She is finally making a bit of slow progress. Next week ENT
will scope her to find out about whether and why she may have a
narrowed airway.

Eye Surgery

Daniel does need laser eye surgery to reduce the chances of detached retinas in both eyes. The surgery is scheduled for today. Our worry, besides his eyes, is that he will have to be intubated for the surgery. We hope the extubation is only a matter of hours afterward but will have to wait and see. Mommy and Daddy will visit after the surgery.

Bath Day

Mommy gave Daniel his first real bath today. He seemed to like it and didn't cry once. We moved him to the isolette quickly afterwards so that he didn't get too cold. Daddy gave him a bottle yesterday. Daniel is now taking one or two bottles a day. He is having some small dips in his oxygen saturation the last couple days so they are keeping an eye on him to see if it is all the new activity. The doctors are trying him on the regular nasal canula today, since the high humidity version sometimes sends water up his nose.

Sofia was started on inhaled steriods last night since her lung xray showed improvement. They weaned her pressure today on the ventilator. The steriods are those similar to what an asthma patient may take, and should help her breathing. Daddy changed Sofia's diaper today for the first time. She managed to partially extubate herself again in the middle of the night Friday, and we got a late night call. She was reintubated quickly and the nurses are keeping a close watch on her and keeping her wrapped as much as possible.

Two at Once

Yesterday, the nurses took both Sofia and Daniel out of the isolettes so that Mommy could rock them at the same time. It's their first meeting since their birth.

Breastfeeding with Daniel went well yesterday, but today he was too tired today after his eye exam to put in the effort. Unfortunately, he has developed a bit of stage 3 retinopathy in both eyes, requiring the doctor to check him again early next week. If it progresses to plus disease with abnormal vessels developing, he will need laser surgery to help correct the problems. Sofia's eyes for now are stable and the same as last week's exam.

Sofia has been holding steady on her oxygen level over the last few days, but hasn't budged on her settings. The doctor would like to start inhaled steriods once some of the collapsed areas of her lungs have inflated. We hope this will be soon. She was also started on prevacid for the reflux, to help any inflammation of her airway.

Four Pounds

Sofia and Daniel both weighed in at 4lbs, 1 oz last night. Daniel is continuing with his nasal canula, bottle feeds once a day and regulating his own temperature. We may try breastfeeding for the first time tomorrow. Today he wasn't too interested in his bottle, but it's a work in progress.

Sofia was breathing fast this morning and after a chest x-ray, they determined that she has some slight lung collapse on the upper portions of both lungs. They will be starting physiotherapy where an instrument that vibrates is run over the area a couple times a day to help keep the area open. She is also getting albuterol as needed. The good news is that her lungs did not seem to have as much fluid and she hasn't needed the extra lasix dose in a few days. Mommy rocked her today and cuddled, which lately seems to calm her.

Bottles and Breathing Tubes

Sofia generated excitement in the nursery yesterday when she partially extubated herself by grabbing onto her tube and pulling it out. Unfortunately, she could not make it on her own and was reintubated. Now that she is older, she is frustrated and unhappy with the tube in her mouth. They discovered when trying to give her a larger tube that she has some airway constriction, which may need to be investigated prior to any future extubation. Sofia has made a bit of progress this week on ventilator settings and her oxygen is about 30% today.

Daniel is continuing with a small bottle per day for one of his feedings. He is also working on maintaining his own temperature. Once he can do that consistently, he can be in an open crib. Mommy gave him a bottle for his noon feeding today and Daddy rocked him in the afternoon. Mommy also kangarooed with Sofia, which was beneficial in helping her to settle down.

The First Bottle

Mommy gave Daniel his first bottle today - 5 cc's of milk. He seemed to do well with it so we will try more tomorrow. Both babies are now up to 30 cc's per feeding. Daniel is 3 lbs, 13 oz and Sofia is 3 lbs, 11 oz. Sofia has lost weight this week from the diuretics. She was puffier today and was given a dose of lasix. They weaned her pressure this morning, and she was breathing rapidly. Hopefully, she will get used to the new settings and not have to go back up.

Progress

Daniel was switched to nasal canula today which is simply a bit of
extra oxygen through prongs in his nose. He did very well and seemed
happy without all the gear on his head. The pictures are below.

Sofia was unhappy until we took her out of the isolette and Daddy
rocked her. She stared up at him and calmed down enough to fall
asleep in his arms. She has been spitting up a bit lately which could
be due to the added neosure powder or some reflux. Then again she
could just be doing what most babies do. This evening, they weaned
the rate on her ventilator since she had a good afternoon.

10 Weeks Old

Sofia and Daniel are 10 weeks old today! Daniel did very well at a reduced CPAP rate of 5. His nurse even took his gear off for a while and he was breathing fine on his own. Sofia's blood gas this morning was good so they weaned her pressure just a bit on the ventilator. She wasn't too happy today as she got used to it and had to work a bit harder to breathe.

CPAP Again

Daniel gave CPAP a second try today and so far is holding his own. Daddy held him while Mommy kangarooed with Sofia. Sofia stayed at the same settings and about the same level of oxygen today. Both Sofia and Daniel seem much more like babies lately, in their movements and appearance.

Here's the pictures and a clip of Sofia looking around, hiccupping and sneezing too.

A Better Day

Sofia's diuretics seem to have finally kicked in and she lost an ounce last night. It improved her breathing and she was on about 30 to 35% oxygen today, with less desats.

Daniel did well with more reductions on his ventilator rate, and he stayed at mostly room air today (21% oxygen).

The doctors added more fat to the babies' diets to maximize calories which should continue to improve their weight gain. Here are today's pictures of both of them sleeping.

Growing

Sofia and Daniel are now both over 3.5 pounds! They each grew in length this week. Daniel is now about 17 inches long while Sofia is 15.5 inches long. They are measured every Monday.

Mommy kangarooed with Sofia and then Daniel today. Daniel finally settled down when held upright with his pacifier. Sofia was on about 40% oxygen during the day and Daniel's ventilator settings were reduced again. Sofia's outfit today said "I love my Mommy".

A Visit from Grandpa

Grandma and Grandpa enjoyed their visit with Daniel and Sofia today. Sofia seemed to be having a better day and her ventilator rate was reduced this morning. She looked a bit less puffy and the lasix seemed to be helping. Daniel's ventilator rate was also reduced on the NIPPV. Both babies are getting 27 cc's of food every 3 hours. They are good eaters and are almost up to 3.5 pounds each.

Saturday Afternoon Kangaroo

Today Daddy kangarooed with Sofia and Mommy kangarooed with Daniel. Both babies got new isolettes. They were changed so that the older ones can be used for more critical babies. The isolettes that Daniel and Sofia are now in don't open from the top.

It looks like Daniel will soon be graduating to Nursery #2 (both are currently in Nursery #3). We hope that Sofia won't be far behind. She was very puffy today from the fluid retention, and she also received a blood transfusion to help her oxygenation.

Friday Update

Sofia seems to have stabilized for now and they are keeping her at the same vent settings. Her oxygen is anywhere from 40% to 50%, which is thankfully lower than a couple days prior. They did increase her lasix dose to help with her edema. Mommy kangarooed with her today and read her The Runaway Bunny.

Daniel did well today and for most of the time was on room air (21% oxygen). Mommy kangarooed with him yesterday.

Both babies had eye exams today which showed stage 1 retinopathy in both eyes. The doctor will continue to monitor them weekly. Their feedings were also increased again this week. Here are pictures from today and yesterday.

A Step Back

Daniel was put back onto the NIPPV at slightly higher settings late yesterday after trying CPAP. The doctors will wait a week before trying it with him again.

Sofia is still having a harder time breathing and the doctors increased her settings again. The plan is to just let her grow for another couple weeks and wean the ventilator if possible.

2 Months Old

Daniel is now on CPAP and doing well with the changeover. Sofia, however, had more difficulty breathing today and her ventilator settings were increased to a rate of 20 and a pressure of 22. Both settings are usually around 16 before the doctors attempt extubation. Rather than have her struggle even though her blood gas was ok, they increased the settings to help her breathe and grow.

Photo Op

The babies posed for some great photos today, taken by Daniel's nurse. She took off his NIPPV for a few close ups. You can see them all at our photobucket album.

It was bathtime for Sofia and Mommy washed her hair and gave her a spongebath. After getting her hair brushed, she settled down and enjoyed a pacifier. Daniel kangarooed and spent some time without his hat today, as you can see in the pics. Yes, his head is shaped a bit strangely from the NIPPV tubes, but the nurses tell us that goes away when they are older and no longer need the tubes. The babies got their first injection for 2 month immunizations, and will get another one tomorrow.

Sunday Visit

Grandmommie and Grandaddy visited today and saw how much bigger the babies are now. Daddy held and rocked Sofia, who is still on minimal ventilator settings after the attempted extubation. Both Sofia and Daniel are now on 25 cc's of food every 3 hours. They are both due for their 2 month vaccinations and after those, the doctors are thinking of trying Daniel on CPAP. It is different from the NIPPV in that it is just continuous pressure, but the setup is the same.

No Go

Sofia was extubated today but couldn't manage the NIPPV so she was reintubated. The steroids were stopped and she is still on relatively low settings. The plan is to wait a couple weeks and give her more time to grow stronger. When we visited today she was resting after the hard work she put in earlier trying to breathe without the tube.

Daddy kangarooed with Daniel. Daniel is getting the hang of kangaroo now and didn't even require higher oxygen to transition.

We only had one troop of trick or treaters last night. Next year, we hope Daniel and Sofia will join the fun and help hand out candy.