Today Mommy and Daddy took Sofia on her first trip since coming home. It was to the pediatrician who was very happy to meet Sofia!
It was a definite production taking the vent, pulse ox, oxygen tank and assorted peripherals all together with her and the nurse but that's why we bought the SUV. Mostly it went off well with just some small glitches. We'll get better for the next time when Mommy has to take Sofia back to Yale in 2 weeks to see some of the Drs with just her and the nurse (Daddy has to go back to work!).
Otherwise things are settling into a routine, still have a few more things to get worked out but hopefully by this weekend we'll be stabilized and it is all worth it to have our little girl home!
Thursday, April 30, 2009
Tuesday, April 28, 2009
Sunday, April 26, 2009
Saturday, April 25, 2009
Can you hear me now?
Good news and bad news. Sofia is on track to come home, she's a little higher on her settings as she's recovering from her cold and she's teething so she's been a bit tempermental but we're so far on track for her to come home next week.
In order to drain her fluid they had to operate on her and installed small tubes in each ear to facilitate drainage. Everything went well.
However after testing Sofia she does have some mild hearing loss in each ear. They aren't sure the extent yet but it looks like she's going to need hearing aids in each air. Likely for life.
Of course there isn't a root cause as to why and there isn't much data so the Drs are really going off the percentages.
Also in scoping her out they discovered that she has a lot of shortening/blockage in her upper respiratory system. That basically means that if she were off the trach she wouldn't be able to breathe on her own. That's bad news but according to the Drs if it doesn't improve in a few months the surgery to rebuild her airway isn't that major.
So it looks like there will be some ongoing effects and stuff to deal with even after she comes home, which we fully expected.
In order to drain her fluid they had to operate on her and installed small tubes in each ear to facilitate drainage. Everything went well.
However after testing Sofia she does have some mild hearing loss in each ear. They aren't sure the extent yet but it looks like she's going to need hearing aids in each air. Likely for life.
Of course there isn't a root cause as to why and there isn't much data so the Drs are really going off the percentages.
Also in scoping her out they discovered that she has a lot of shortening/blockage in her upper respiratory system. That basically means that if she were off the trach she wouldn't be able to breathe on her own. That's bad news but according to the Drs if it doesn't improve in a few months the surgery to rebuild her airway isn't that major.
So it looks like there will be some ongoing effects and stuff to deal with even after she comes home, which we fully expected.
Wednesday, April 22, 2009
Ears
Sofia failed her hearing test, most likely due to fluid in her ears. The ENT doctors would like to bring her to the OR this week to drain her ears and possibly insert tubes to allow fluid to continually drain. They will be able to better assess her hearing after that point. They will also check her trach site to see if there is any granulated tissue prior to her coming home.
Sofia's cold required the doctors to increase her rate on the ventilator, which allows her to breathe more easily. Her nose has stopped running though, so we hope the cold is over soon!
Mommy also met with the nurses and respiratory therapist at the hospital this week.
Here is Daniel talking on the phone (maybe to his sister?). Lately he has been skipping a morning nap and then getting fussier in the evenings, but he does usually go to sleep by 10:30 now. We think the cereal helps too.
Sofia's cold required the doctors to increase her rate on the ventilator, which allows her to breathe more easily. Her nose has stopped running though, so we hope the cold is over soon!
Mommy also met with the nurses and respiratory therapist at the hospital this week.
Here is Daniel talking on the phone (maybe to his sister?). Lately he has been skipping a morning nap and then getting fussier in the evenings, but he does usually go to sleep by 10:30 now. We think the cereal helps too.
Sunday, April 19, 2009
Nice Weather
Finally the weather was nice the last two days. Mommy, Daddy and Daniel took a walk outside with Daniel in the baby Bjorn. He wore his fishing hat (thanks Grandmommy).
Sofia was happy this weekend, but needed a bit of extra oxygen on Sunday due to her cold.
Sofia was happy this weekend, but needed a bit of extra oxygen on Sunday due to her cold.
Friday, April 17, 2009
Delays and More
The home nursing schedule has not yet been filled so we are delayed at least another week for Sofia's homecoming. Today, it was confirmed that she has a cold, but her runny nose started 3 days ago and by now she seems actually to be doing better. In fact, the doctors weaned the rate on the ventilator today. We are also trying a little bit of formula in her milk again, to provide extra protein. Here she is in her swing today.
At home, we are getting medical supplies organized and setting up the area where Sofia will be downstairs in our family room.
Daniel is now about 12 pounds and is doing a lot more baby babbling. Even the occasional laugh. He is sleeping well - only getting up once a night usually to eat. Here he is napping in his swing today.
At home, we are getting medical supplies organized and setting up the area where Sofia will be downstairs in our family room.
Daniel is now about 12 pounds and is doing a lot more baby babbling. Even the occasional laugh. He is sleeping well - only getting up once a night usually to eat. Here he is napping in his swing today.
Saturday, April 11, 2009
Daddy is Fully Trained!
After a fairly eventful 12 hour night shift Daddy is now trained. It was pretty hard to stay awake all night and I'm really tired now but it is all for a good cause. Everything is on track for her to be home in 10 days.
Friday, April 10, 2009
Sofia Smiles
Sofia is now smiling quite a lot. It is so nice to see that she is happy. Here she is being rocked by a volunteer at the hospital. We are just waiting for confirmation on nursing care, and all of the medical supplies will soon be shipped to our house. We can't wait to have her home. Daddy is doing his overnight shift tonight and will then be fully trained.
Sofia has decided not to always eat from her bottles lately, which is frustrating, but as you can see by the rolls of fat she now has, she may just not be that hungry! They have switched to feeding her every 4 hours and there has been some improvement.
Daniel must be on a growth spurt because he is eating all the time. Our second trial of rice cereal went well and so we are feeding it to him once a day. He is holding his head up well now, and doesn't cry as much during tummy time. Here he is trying out Sofia's crib which is now in our family room.
Sofia has decided not to always eat from her bottles lately, which is frustrating, but as you can see by the rolls of fat she now has, she may just not be that hungry! They have switched to feeding her every 4 hours and there has been some improvement.
Daniel must be on a growth spurt because he is eating all the time. Our second trial of rice cereal went well and so we are feeding it to him once a day. He is holding his head up well now, and doesn't cry as much during tummy time. Here he is trying out Sofia's crib which is now in our family room.
Saturday, April 4, 2009
Mommy is fully trained!
Mommy just finished her 12-hour night shift last night so she is fully ready to go. Sofia was really good last night and slept through the night so it wasn't that tough for Mommy. Daddy will do his 12-hour day shift this Sunday which will be tiring but it is all to get his little girl home soon...
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