Friday, April 19, 2013
Going home today :)
We are cleared to go home today just awaiting final paperwork. Should be out of here around 1pm. She is so ready to be away from all these people touching her. She got this cute little heart pillow for her drs and nurses to sign as a keep sake.
Thursday, April 18, 2013
Off the monitors
Lilly is now off all monitors and very active for having open heart surgery about 48 hours ago. It's very inspiring. She had an EEG, X-Ray and echocardiogram today. If all the test come back as expected then she'll probably be released tomorrow.
She's been waving to anyone that comes into the room as long as they don't touch her. It's pretty hilarious!
We can't express enough how much everyone's support means to us. We'll let everyone know if anything else excited comes up.
-Mike
She's been waving to anyone that comes into the room as long as they don't touch her. It's pretty hilarious!
We can't express enough how much everyone's support means to us. We'll let everyone know if anything else excited comes up.
-Mike
Tubes are out!
Big progress this morning Lilly's drainage tubes were taken out and now she is just hanging out with her oxygen and foot IV. We are hoping that everything will be off of her and switched to intermittent monitoring in the next few hours. Then she can start to move around and make progress toward getting up and walking (hopefully by the end of the day).
She is recovering so fast, the dr. says if her X-ray is clear in the morning there is a strong chance she can already go home tomorrow! She will just need to continue on her tylenol and possibly oxy by mouth at home and mama will have to watch her every second so she doesn't crash while walking.
She has no appetite this morning but she has been snacking on a few goldfish and watching price is right clapping along with the audience. Here is a picture
She is recovering so fast, the dr. says if her X-ray is clear in the morning there is a strong chance she can already go home tomorrow! She will just need to continue on her tylenol and possibly oxy by mouth at home and mama will have to watch her every second so she doesn't crash while walking.
She has no appetite this morning but she has been snacking on a few goldfish and watching price is right clapping along with the audience. Here is a picture
Wednesday, April 17, 2013
Out of ICU and on the floor
We just got out of ICU and are on the regular floor now. She is off most Iv hook ups and just has her stomach drainage tube, a lead in her leg in case she needs more morphine and a heart/oxygen monitor. She has chugged down 10 ounces of pedisure today, she was starving. She was awake and playful (although very drugged up) this morning and now she has been sleeping for the last hour once she got her oxycodone dose.
We are expected to be here probably 3 more days. She is expected to get her drainage tube out tomorrow and then be able to get out of bed and try to move around a bit!!
The nurses keep calling her superstar patient doing everything very quickly in the recovery process
We are expected to be here probably 3 more days. She is expected to get her drainage tube out tomorrow and then be able to get out of bed and try to move around a bit!!
The nurses keep calling her superstar patient doing everything very quickly in the recovery process
Alert and drinking
Lilly started to become more and more aware through the night and is now waking up for periods of time. She drinking small amounts of water and I'm sure would love to suck down a bottle, but the nurse is being cautious on feeding right now. She's doing a lot of whimpering as I'm sure she's sore and cranky, but like before her progress this far has been amazing.
I decided to take the first shift instead of Andrea so she's home resting up for day two. I think I got the better deal out of that one! ;). She'll be back around 6am to relieve me and I'll finally get to have some sleep. Grandma Jennie should be in around 8am to give Andrea a hand. Both of them have been amazing during this process. Couldn't be more proud of my girls!!
If Andrea doesn't give an update when she comes back expect another one mid afternoon.
-Mike
I decided to take the first shift instead of Andrea so she's home resting up for day two. I think I got the better deal out of that one! ;). She'll be back around 6am to relieve me and I'll finally get to have some sleep. Grandma Jennie should be in around 8am to give Andrea a hand. Both of them have been amazing during this process. Couldn't be more proud of my girls!!
If Andrea doesn't give an update when she comes back expect another one mid afternoon.
-Mike
Tuesday, April 16, 2013
Coming around
Gradually, Lilly is becoming more aware of what is going on around her. She's not liking it, but they've been giving her some anti-anxiety medicine to help while they still have to have her hooked up to so many monitors. She had a bit of a cranky episode while Dad left the room, but who could blame her! ;)
Still on track to get out of ICU in the morning and there are mixed feelings. On one hand it's another step closer to getting her home, but we've grown accustomed to the attention she receives in the ICU. Lets hope we don't have to share a room while in the general area of the hospital!!
They are only allowing one parent to sleep in the room so I'll stick around as long as I can hold out and then come back early to relieve Andrea in case she didn't get much sleep. Lilly will be on pain meds, anti-anxiety and a mild sedative through the night to help her sleep. Lets hope Mom can do the same!
This will probably be the last update for the night so to those that are following - good night. More to come in the morning.
-Mike
Still on track to get out of ICU in the morning and there are mixed feelings. On one hand it's another step closer to getting her home, but we've grown accustomed to the attention she receives in the ICU. Lets hope we don't have to share a room while in the general area of the hospital!!
They are only allowing one parent to sleep in the room so I'll stick around as long as I can hold out and then come back early to relieve Andrea in case she didn't get much sleep. Lilly will be on pain meds, anti-anxiety and a mild sedative through the night to help her sleep. Lets hope Mom can do the same!
This will probably be the last update for the night so to those that are following - good night. More to come in the morning.
-Mike
Breathing tube out
Lilly just had her breathing tube taken out and is breathing well on her own. Again, this is before they expected due to her awesome recovery thus far. If she continues on this course she may get out of the ICU tomorrow morning. She is now off the sedatives and she's sleeping comfortably.
We'll update everyone as things progress.
-Mike
We'll update everyone as things progress.
-Mike
Resting in ICU
Lilly's resting peacefully in ICU and is doing really well. The doctor said we might even take out the breathing tube this evening.
We can't express enough how blessed we feel.
-Mike
We can't express enough how blessed we feel.
-Mike
Out of Surgery
Lilly did very well during the surgery and the surgeon has given us the update. She is resting in ICU and they are prepping her so that Andrea and I can see her. It should only be about 15 more minutes before we can be with our little girl.
The surgeon said that the hole was bigger than expected, but that it was a pretty routine closure. The hole had very defined walls which made it easier to identify and close. He said she was in surgery for exactly 2 hours which was much shorter than the surgeon expected. She was all patched up around 10:30.
As soon as we see Lilly and settle down we'll update the blog again and post some pics. Thanks again for everyone's support and prayers. She's such a strong little girl!
-Mike
The surgeon said that the hole was bigger than expected, but that it was a pretty routine closure. The hole had very defined walls which made it easier to identify and close. He said she was in surgery for exactly 2 hours which was much shorter than the surgeon expected. She was all patched up around 10:30.
As soon as we see Lilly and settle down we'll update the blog again and post some pics. Thanks again for everyone's support and prayers. She's such a strong little girl!
-Mike
Off heart and lung machine
Just got word that the surgery is going really well and that they are already off the bypass machine. This is a great sign as we expected this to take at least another hour or so. The ICU nurse said that there were two attending doctors assisting in the surgery this morning which is making the procedure more efficient.
Next step will be meeting with the surgeon while they patch her back up and then hopefully within an hour after that meeting we can see Lilly.
We'll keep you posted.
-Mike
Next step will be meeting with the surgeon while they patch her back up and then hopefully within an hour after that meeting we can see Lilly.
We'll keep you posted.
-Mike
Surgery has started
So... Lillly went into surgery around 8:30 and we were notified that she was going to be put on the heart and lung machine around 9:30. She is expected to come out of surgery by 1:30 and go straight to ICU where Andrea and I can see her.
Andrea and I recieved a tour of the ICU and the head nurse was really nice. Lilly will have her own nurse during her ICU stay and they expect her to go to the normal rooms within 48 hours. There can only be three people at a time with her in ICU and they ask that we really limit the number of visitors.
Andrea's parents have showed up to wait with us and we're all just anxious to get this over with. I'll send out another update once we hear that she's off the heart and lung machine.
Thanks again to everybody for the kind words and prayers. She's in good hands.
-Mike
Andrea and I recieved a tour of the ICU and the head nurse was really nice. Lilly will have her own nurse during her ICU stay and they expect her to go to the normal rooms within 48 hours. There can only be three people at a time with her in ICU and they ask that we really limit the number of visitors.
Andrea's parents have showed up to wait with us and we're all just anxious to get this over with. I'll send out another update once we hear that she's off the heart and lung machine.
Thanks again to everybody for the kind words and prayers. She's in good hands.
-Mike
Saturday, April 13, 2013
Pre op update
We found out a lot of surgery details at our pre op appointment on Friday. We met with the surgeon who gave us a very detailed play by play of the surgery (I didn't pass out :)) he said that Lilly's procedure should be very straight forward and described all risks in the 1 to less then 1 percent category. Basically she will have a horizontal incision a few inches below the neck from the top to the bottom of the sternum, the hole will then be patched with a gortex patch and some stitches. Overtime tissue will grow over leaving the heart healed and functioning as a normal persons does. He is also going to try to clip and divide her right sided aortic arch to alleviate possible future pressure on the Trachia.
We check in for surgery at 6:15 am on Tuesday morning, there is a 1 hour anesthesia process in which she is put under and hooked up to the various machines, ivs, and monitors for surgery, then surgery will last about 4 hours. When she is out of surgery we will be paged by the surgeon and meet with him to discuss how it went before we get to see Lilly in the icu. Our estimated time line will be 2-3 days in icu while she is still on a breathing tube and mostly still out of it on her pain meds and then moved to a regular hospital room once it is removed with a total stay of about 5-7 days.
Once we are out of the hospital we will be home for 6 weeks while she recovers and her rib cage heals back together...
We are doing good distracting ourselves pre surgery taking fun family outings, we are going to a mariners game tomorrow and having fun letting her walk all over the place exploring new things.
We check in for surgery at 6:15 am on Tuesday morning, there is a 1 hour anesthesia process in which she is put under and hooked up to the various machines, ivs, and monitors for surgery, then surgery will last about 4 hours. When she is out of surgery we will be paged by the surgeon and meet with him to discuss how it went before we get to see Lilly in the icu. Our estimated time line will be 2-3 days in icu while she is still on a breathing tube and mostly still out of it on her pain meds and then moved to a regular hospital room once it is removed with a total stay of about 5-7 days.
Once we are out of the hospital we will be home for 6 weeks while she recovers and her rib cage heals back together...
We are doing good distracting ourselves pre surgery taking fun family outings, we are going to a mariners game tomorrow and having fun letting her walk all over the place exploring new things.
Thursday, April 11, 2013
Surgery has been delayed by 1 day
Lilly's surgery has been moved to Tuesday April 16th. There was a newborn baby needing 2 days of procedures done Sunday and Monday.
Also her surgeons name is dr. Permut, here is a link to his bio...
http://www.seattlechildrens.org/medical-staff/Lester-C-Permut/
Also her surgeons name is dr. Permut, here is a link to his bio...
http://www.seattlechildrens.org/medical-staff/Lester-C-Permut/
Monday, March 4, 2013
VSD?
VSD- Ventricular septal defect describes one or more holes in the wall that separates the right and left ventricles of the heart. Ventricular septal defect is one of the most common congenital (present from birth) heart defects. It may occur by itself or with other congenital diseases.
Before a baby is born, the right and left ventricles of its heart are not separate. As the fetus grows, a wall forms to separate these two ventricles. If the wall does not completely form, a hole remains. This hole is known as a ventricular septal defect, or a VSD.
Ventricular septal defect is one of the most common congenital heart defects. The baby may have no symptoms, and the hole can eventually close as the wall continues to grow after birth. If the hole is large, too much blood will be pumped to the lungs, leading to heart failure. The cause of VSD is not yet known. This defect often occurs along with other congenital heart defects.
Symptoms-Patients with ventricular septal defects may not have symptoms. However, if the hole is large, the baby often has symptoms related to heart failure.
Most common symptoms- Shortness of breath, Fast breathing, Hard breathing, Paleness, Failure to gain weight, Fast heart rate, Sweating while feeding, Frequent respiratory infections
Treatment-If the defect is small, no treatment is usually needed. However, the baby should be closely monitored by a health care provider to make sure that the hole eventually closes properly and signs of heart failure do not occur. Babies with a large VSD who have symptoms related to heart failure may need medicine to control the symptoms and surgery to close. Lilly takes a diuretics twice a day.
If symptoms continue even with medication, open heart surgery to close the defect with a Gore-tex patch is needed.
Before a baby is born, the right and left ventricles of its heart are not separate. As the fetus grows, a wall forms to separate these two ventricles. If the wall does not completely form, a hole remains. This hole is known as a ventricular septal defect, or a VSD.
Ventricular septal defect is one of the most common congenital heart defects. The baby may have no symptoms, and the hole can eventually close as the wall continues to grow after birth. If the hole is large, too much blood will be pumped to the lungs, leading to heart failure. The cause of VSD is not yet known. This defect often occurs along with other congenital heart defects.
Symptoms-Patients with ventricular septal defects may not have symptoms. However, if the hole is large, the baby often has symptoms related to heart failure.
Most common symptoms- Shortness of breath, Fast breathing, Hard breathing, Paleness, Failure to gain weight, Fast heart rate, Sweating while feeding, Frequent respiratory infections
Treatment-If the defect is small, no treatment is usually needed. However, the baby should be closely monitored by a health care provider to make sure that the hole eventually closes properly and signs of heart failure do not occur. Babies with a large VSD who have symptoms related to heart failure may need medicine to control the symptoms and surgery to close. Lilly takes a diuretics twice a day.
If symptoms continue even with medication, open heart surgery to close the defect with a Gore-tex patch is needed.
Background
This blog is to update our family and friends on Lilly's heart repair progress.
Background: When Lilly was born her pediatrician heard a heart murur while examinng her. While we were in the hospital Lilly's heart was looked at with an echocardiogram (basically an ultrasound of the heart). The test was braodcast live to Seattle Children's Hospital where a cardiologist viewed the pictures and then informed us that she had a large VSD which is 7mm in size. (See VSD post for detailed info on what a VSD means). A lot to take in with a 1 day old newborn baby...
Thus began our relationship with Seattle Children's and our many trips back and forth from Bellingham for checkups until Lilly was 6 months old and we moved to Bellevue. What a blessing as now we only live 15 minutes from the hospital. A typical visit to the cardiology clinic includes an EKG, oxygen, blood pressure and echocardiogram tests, this is followed by a detailed visit to review results with our cardiologists Dr. Bhat and Dr. Chun.
We have known in the back of our minds the possibility of open heart surgery to repair the hole since birth and were informed by our cardiologist Dr. Chun on February 8th shortly after her 1st birthday (after 2 consecutive echocardiograms showing the heart to be enlarged in size due to increased blood flow from the heart having to work so hard to compensate for the hole) that Lilly would be presented to the board of cardiologists on February 25th to determine if Lilly was a candidate for open heart surgery to repair her VSD. We received notice the next day that consensus of the board was 100% and that surgery was necessary and we then scheduled her surgery for April 15th, 2013.
We will be updating this blog daily while we are in the hospital to keep everyone up to date on Lilly's recovery as there is no cell phone service. Feel free to leave comments or email me at aramirez113@gmail.com or pm on Facebook.
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