Yet another accident

"Honey I had to crash that Honda [Volvo]..."

Everyone is ok.

This time Daddy managed to flip over the Volvo on our driveway. I hit a snowbank and couldn't turn into the driveway and the car slowly rolled over. Our driveway, unfortunately, goes up a steep-ish hill right after the road dips before it so you go down then right back up, which in the snow is that much harder. No excuses though.



1) We're ok. 2) Volvo's vaunted safety/security features are legit, not a scratch on us. 3) This is now the third serious auto accident in the family in as many months so that's enough for us and hopefully we are done until the kids are in college!

This will probably delay us from seeing Sofia and meeting w/ her team tomorrow and Fri as it is New Year's and they need to figure out how bad the car is damaged.

However Sofia had a great day today! We changed her trach today and it went smoothly. As usual she went a bit wild and got very excited and her heart rate up but we dealt with her well so by 3pm she took her entire bottle through her mouth, which was a huge step!

Sofia Takes a Bottle

Sofia took her first bottle today! She loves her pacifier and her food so we knew she would do well.

In Training

Mommy has been hanging out with Daniel at home the last couple days while Daddy and Grandma visit Sofia and get trained in how to take care of her. There are a number of activities that the nurses will certify us in, such as her feedings, changing her trach, changing the trach ties on her neck, suctioning her etc.

Sofia loves to be held but is still adjusting to her new situation and sometimes goes a little crazy if her food isn't on time or her diaper is dirty. Daniel is doing well and eating a lot.

Aunt Meredith and Uncle Ronak, who live in St. Louis, visited both babies this past weekend.

Here is a recent picture of Sofia in her new crib in the respiratory unit, and a picture of Daniel sleeping on a boppy after a feeding.

Xmas 2008 Video!

Here's a video of our first Christmas with Sofia and Daniel!

Video of Daniel Leaving the NICU

Daddy was playing with his new computer and video camera and made this movie yesterday while Mommy was visiting Sofia...

Sofia leaves the NICU...

... and went upstairs to respiratory today. This is a great thing and it means that she is on the track to come home. Although you can't tell well, she is now in a room just with one other baby and the focus is on helping her grow and training the parents (and Grandma) in how to take care of her trach. Also Grandma can come on her own now to see her.

Hopefully in ten weeks or so she'll be home (and off her vent too!)

Merry Christmas!

It is the first Christmas for Sofia and Daniel. Thanks to everyone who sent them a little something, they will be playing with their toys soon enough and we'll be reading to them the books that they got.





Mommy is on her way to the hospital to see Sofia, more pictures later!

Grandpa visits Sofia and Daniel

Grandpa was here on Christmas Eve visiting the little ones. Here he is with Daniel.





They were trying to move Sofia upstairs to respiratory but we got bumped by an emergency case from another hospital. They are now thinking of moving her on Sat.

Daddy visits Sofia

Daddy finally got to see Sofia without her breathing tube today and she looked really cute sucking on her binky! She's off her phenobarbitol and appears to be recovering well from her hernia surgery. Even better news is that it looks like the will have a bed in the respiratory unit this Fri.

Daddy also took a tour of the unit. It is much smaller and intimate allowing the family to really spend some quality time there. The focus is on helping Sofia grow and training everybody to nurse-like levels of being able to care for her when she is home on her trach. If she can make it up there it will make a good Xmas gift away from the stress of the NICU. From there it will be at least 10 weeks before she comes home so the sooner the better...

Snowed in

Like much of the northeast we were snowed in yesterday and it looks like today. Sofia is recovering well from her surgery and is less on her morphine. Here's a picture one of the nurses took of her and her new trach as we haven't been able to get out there since her surgery. For the first time you can see all of her face and her chubby cheeks.



Here's Daniel snuggled in in his bassinet at home.

Sofia's Surgery

Sofia had surgery today for her tracheotomy and her hernias. All went well and she will be sleeping most of the day. Daniel's big agenda item for today was a bath. Here are some pictures taken by their nurse prior to Daniel leaving the hospital.

48 Hours at Home

It is wonderful having Daniel home with us. He does seem to have his days and nights mixed up and is wide awake in the middle of the night. Mommy took him to the pediatrician yesterday and today, we went back to the hospital for an eye checkup. His eyes are still healing well from the laser surgery and the results are good so far. Mommy stopped in to see Sofia and deliver milk. She has a hernia which will require surgery and it may be that they will try to coincide it with her tracheotomy this Friday or early next week.

Daniel is home!

Getting Ready

Mommy and Daddy brought Daniel's car seat into the hospital today. The nurses do a car seat test to make sure babies can sit and breathe well in the car seat for at least the amount of time it will take to get home. Daddy fed Daniel his bottle, which is mixed with yucky vitamins twice a day. He managed to drink it down though. We are getting the house ready for his arrival and expect him to come home this week.

Sofia had a good two days and seems to be back to herself lately. This is a picture of her nurse holding her yesterday since Mommy still has a cold. She was very alert.

Daniel is now 5lbs, 5oz and Sofia is 5lbs, 3oz.

14 Weeks Old

Sofia and Daniel are 14 weeks old today. Daniel is now taking all his food by bottle and working on trying not to drop his oxygen saturation while eating. Here he is sleeping in his crib today. Sofia has not had an episode of seizures since Tue night. The MRI did reveal that a small part of her brain was affected by the asphyxia, but the results will most likely be mild. We will just have to wait and see. The neurologists expect the seizures and trembling to dissipate over the next week or so. They are keeping her at a stable level of medication for now. Next week, they may re-engage the ENT doctors to discuss the plan for her tracheostomy.

Sick Day

Daddy came down with strep throat and Mommy had a soar throat today
too so we didn't get to visit the babies. Sofia had her MRI today and
we are awaiting the results. She did have another seizure this
morning and was given more medication. Daniel is doing well with his
bottle feeding today and he passed his hearing test -another step
toward coming home.

--
Sent from Gmail for mobile | mobile.google.com

Scary Sunday

We received a call from the hospital this morning because Sofia was
having seizures. The doctors suspect it is caused from lack of oxygen
prior to the emergency reintubation. They are controlling the
seizures with medication. So far the CAT scan did not reveal a major
brain injury but she will get an MRI this week to assess any damage.
Sofia was asleep for most of our visit today due to the medication.
She is not receiving any food, only IV fluids, until there is a sense
that the episodes are over. It was a tough and scary day for us.

Big Setback for Sofia

We got a call at 8am this morning from the attending that Sofia has started to have some seizures. There are several possible causes for them: asphyxia (most likely due to lack of oxygen while she was be ex/reintubated), infection (which they have checked for thoroughly and started her on antibiotics), and electrolyte imbalance (not the problem. She had a CAT scan this morning which came back normal and she is now on phenobarbitol which has reduced/eliminated the seizures.

She will also have an MRI in a few days which will reveal the extent of any brain damage but even if nothing shows up the seizures may be serious (or indicate serious issues) or they may go away on their own with little/no long term effect.

For now it means that any plan for a tracheostomy is on hold while the neurologists assess what is going on. The phenobarbitol has a sedative effect (for now) so she is on higher setting than normal also.

Split Up

Sofia seemed recovered today from her extubation ordeal and after her
spongebath, her nurse dressed her up with a bow in her hair. We are waiting for the ear nose and throat
doctors to come up with their plan for diagnosing a possible airway
issue and for the trach surgery.

Daniel was moved to nursery 1 which made visiting a bit harder. We
gave him a bath today and he enjoyed watching his mobile. He is
improving with his bottles and breastfeeding.

Sofia failed extubation

Sofia was extubated today and she was able to do fine while calm or asleep but once she got excited/upset she worked her self up and was unable to breathe. The Drs gave her all sorts of medication and care but in the end her lungs seized up and they had no choice but to reintubate her.

They will talk to us tomorrow about options but it looks like she will need a tracheotomy.

Here's a picture of her while she was on CPAP and off the tube for a while. She's getting a little chubby!

Daniel Coming Home Soon - Shamless plug for our registry

It looks like Daniel may be coming home soon, as early as next week!  He’s pretty much through all of his milestones with the exception of being 7 days off of caffeine (at least until he starts drinking coffee) and taking all 8 feeds each day from a bottle.  Right now he’s a little more than halfway on the feeds and has been off caffeine successfully for 3 days.

 

So we are now scrambling to get things ready at home.  On that front if you feel like getting something to help us get ready for Daniel’s return, please take a look at our registries on the bottom.  Your ongoing support through the comments has been a great help, so please don’t feel like you have to get anything.  Unless you are family, of course.  J

 

Together Again

Sofia made more progress today and the ventilator was weaned further. Daniel always seems sleepy for his mid day feedings lately so Mommy stayed later today to breastfeed him at 6pm. He has days and nights mixed up and is more awake in the evenings now. The nurses snapped a photo of Daniel and Sofia hanging out together briefly today in Mommy's arms.

Good News

Sofia had her examination in the OR by the ENT team today. We got the good news when she was brought back that they did not find anything wrong with her airway. This means that the doctors will develop a plan for extubation again soon. This was Sofia's first trip outside of Nursery 3! They have a special portable isolette with a built in ventilator.

Daniel is progressing well and just working on taking a bottle. Mommy put together his mobile today but needs to bring in the batteries. The doctors stopped his caffeine today and it will take about a week for it to exit his system. Mommy gave him a bath today too.

In the crib

Daniel was hanging out in his crib today. He's off of all his breathing stuff now and has only a feeding tube. He's taking a little more than half of his feeds off the bottle. Mommy was able to give him a little milk from her breast and Daddy gave him about half a bottle but he seemed really tired for both. Also the surgeons took a look at him and it turns out he doesn't have a hernia and instead has some hydroseal instead which shouldn't be a major deal. Also it looks like his laser surgery was mostly successful.

Daniel was smiling with his eyes wide open all day and very happy. Tomorrow Mommy will bring a mobile in for Daniel and they are now talking about him being home in 2 weeks or so!

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.