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.

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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!