For the past two days we have been working on feeding. Yesterday's radiographic swallow test had mixed results. Ginny did well protecting her airway while sucking on the low-flow nipple, but seemed to have aspirated a little milk while using the standard and high-flow nipples. The Occupational Therapist came up to work with her a little after the test, and she did OK.
Today the OT was back and Ginny did well with her morning feed. My parents got to watch me feed her before heading back to Connecticut. (We're using the bottle for now. No, Matt Z, I have not been fitted for a man-bra.) They have been down here for about 5 weeks and needed to get home.
During morning rounds Dr. Malhotra (Dr. Bleiweis' partner and a very skilled doctor in his own right) actually used the D word - discharge. We have a plan to get Ginny feeding without the tube - and if she can stick to the plan - we could be home as early as the middle of next week.
Ginny's afternoon feeds didn't exactly go according to our master plan, but we think we've figured out the problem. From the day of her closure until a couple days ago, she was receiving her milk through a tube that went through her nose, down her esophagus, through her stomach, and into the first part of her small intestine. She was fed continuously through that tube at 10 cc per hour. After her swallow test, that tube should have been pulled back so that it emptied into her stomach. Whatever she didn't take from the bottle would be fed to her through the tube. We think that tube didn't get pulled back as far as it should have been, so when we tried to feed her 30 cc through the tube this afternoon, it didn't go to the right place. That caused her quite a bit of discomfort in her belly, but we've pulled the tube back some and she's feeling better.
The only thing keep us here at the hospital right now is Ginny learning how to eat. We're a little frustrated because it sounds so simple, but it really isn't if you think about it. She has to coordinate sucking, swallowing, and breathing all at the same time without drowning in milk. Most babies learn that in the first two hours of their lives and it becomes instinctive as soon as the figure it out. Ginny is six weeks old today and she hasn't been able to eat for most of her life, so it doesn't come as easy for her. We're OK, though. We'll stay here with her as long as it takes.
Friday, July 9, 2010
Wednesday, July 7, 2010
Viva Espana!
Ginny had a big day today - not the biggest day she's ever had - but a big day. Yesterday she had a bedside swallow test. She didn't do very well, so we tried again this morning. She did great, sucking down 13 ml of milk in no time. She'll be the chugging champ of her sorority. Or NOT. She'll have one last study tomorrow with radiology before they let her loose on Mom's breasts.
Dr. Malhotra removed her chest tubes and pacing wires just a little while ago. We took the saturation monitor off her forehead and she doesn't need the nasal cannula anymore, so she has a few less lines. Soon we'll have the wireless version of Ginny Lee. We'll call her Ginny 2.0. We also gave her a bath and washed her hair. All this while she watched the Spain vs. Germany World Cup Semifinal.
Some of you know that Rachel is a big soccer fan. Me - not so much. Rachel insists that Ginny will be a soccer player. I think if God wanted us to play soccer, he wouldn't have given us arms. Sorry DW.
Tomorrow we're going to bring the grandparents in to see her for the first time since her surgery. We are still going to hold off on any other visitors for a while. I know everyone is anxious to meet her, but I hope you understand. Thanks to everyone for your prayers and support.
Tuesday, July 6, 2010
On Gainesville and Giving
In the months before Ginny was born, Rachel and I often commented about how much we like living in Gainesville. A lot of people that graduate from the University of Florida can’t wait to get out of town because they see it mostly as “just a college town.” College towns do have their drawbacks. When school is in session, it can take you a while to get a seat at a restaurant. If nightlife is your thing, you will have to put up with the occasional inebriated 20 year old girl crying outside a bar over something trivial – but that’s actually kind of entertaining. Other than that, Gainesville has everything a much bigger city has except crime and traffic. We love it.
Our experience with Ginny over the last month has only increased our love for Gainesville. Given her condition at birth - pulmonary hypertension combined with her heart defect - if she were born somewhere else she may not have survived. That little fact is not lost on Rachel and me. We realize how incredibly fortunate we are to live in Gainesville. Not everyone is this lucky.
Soon after Rachel and I got into the hospital with Ginny we started to become aware of the needs of the families around us. We immediately started trying to find ways to help. I've already mentioned Ginny’s starring role in a TV commercial for the March of Dimes. The UF March for Babies will be coming up this fall. We also did a radio spot for the Children’s Miracle Network, whose fundraiser will be coming up next month.
We’ve met families from all over Florida and the eastern US with children at Shands. Some of them – like the families of kids waiting for organ transplants – are here for months. Some families are actually here for the better part of a year. When you’re away from home for that long, even the cheapest of cheap hotels can be an incredible financial burden. I can’t imagine that on top of the burden of having a sick child.
One organization that helps families with sick children – I’m sure you’ve heard of them – is Ronald McDonald House Charities. Here in Gainesville, Ronald McDonald House Charities of North Central Florida does two things to support families. The first is the Ronald McDonald House of Gainesville, which has 30 rooms for families. The house is a few blocks away from Shands, but it is open to families with a child in the hospital, regardless of which hospital in town. The other is the Ronald McDonald Family Room here on the 10th floor of Shands. The room is a comfortable place for families to relax and have a snack or catch some rest without having to leave the hospital.
There is no charge for using the Ronald McDonald facilities, but they do ask for a $10 donation for each night a family stays at the house - though the true cost of their operation is much higher. Sadly, even this small amount is beyond the means of some families. We wanted to find some way to help these families.
This month Ronald McDonald House of North Central Florida is celebrating their 28th anniversary. As part of that celebration, we are helping them start a new room sponsorship program called Ginny’s Room.
Ginny’s Room will allow individuals, organizations, or corporations to sponsor a room in the Ronald McDonald House of Gainesville. All room sponsorships will be renewable on a 12 month basis for an annual gift starting at $5,000. The room could be a guest room, kitchen, administrative office, TV Rooms, playroom, living room, laundry room, or the courtyard.
These room sponsorships make a direct impact on the lives of the over 800 families that stay in the House each year by providing the necessary annual income RMHC of NCF needs to cover the approximate $100 a night cost to operate a single guest room.
Sponsorship includes a plaque with your name placed on your sponsored room, recognition in the Ronald McDonald House Charities’ newsletter and on their website, a special keepsake to display in your home or office, and the knowledge that you are helping a child and their family during a very difficult time.
Now, I know that times are tough – and $5,000 is a lot of money. If you are financially blessed enough and moved to do so, please sponsor a room at the Ronald McDonald House of Gainesville. If you are like me and you are motivated to help, but not quite financially able to give $5,000 right now, there is still a way you can help. In order to get Ginny’s Room started, Ronald McDonald House will put Ginny’s name on a room and allow our friends and family to contribute towards that room. Many people over the last month have asked us what they can do to help. As I’ve said before, we are lucky to have good jobs with gr eat benefits and a wonderful support system of friends and family. Here is a chance to help us help others.
A lot of you have already helped us in a lot of different ways and we could not have gotten this far without the prayers and support that all of you have provided. Although we are not home yet, we will be soon enough. Unfortunately another baby will take our place as soon as we leave, and they will need help too. Please help their family by donating a night in Ginny’s Room at the Ronald McDonald House. You can send donations to:
Ronald McDonald House Charities of North Central Florida (RMHCNCF)
1600 SW 14th Street
Gainesville, Florida 32608
or donate with a credit card at www.rmhcncf.org
Please note “Ginny’s Room” somewhere on the check or with the donation. If you have any questions, please contact Rebecca Haggerty-Williams at (352) 374-4404 or info@rmhcncf.org.
Our experience with Ginny over the last month has only increased our love for Gainesville. Given her condition at birth - pulmonary hypertension combined with her heart defect - if she were born somewhere else she may not have survived. That little fact is not lost on Rachel and me. We realize how incredibly fortunate we are to live in Gainesville. Not everyone is this lucky.
Soon after Rachel and I got into the hospital with Ginny we started to become aware of the needs of the families around us. We immediately started trying to find ways to help. I've already mentioned Ginny’s starring role in a TV commercial for the March of Dimes. The UF March for Babies will be coming up this fall. We also did a radio spot for the Children’s Miracle Network, whose fundraiser will be coming up next month.
We’ve met families from all over Florida and the eastern US with children at Shands. Some of them – like the families of kids waiting for organ transplants – are here for months. Some families are actually here for the better part of a year. When you’re away from home for that long, even the cheapest of cheap hotels can be an incredible financial burden. I can’t imagine that on top of the burden of having a sick child.
One organization that helps families with sick children – I’m sure you’ve heard of them – is Ronald McDonald House Charities. Here in Gainesville, Ronald McDonald House Charities of North Central Florida does two things to support families. The first is the Ronald McDonald House of Gainesville, which has 30 rooms for families. The house is a few blocks away from Shands, but it is open to families with a child in the hospital, regardless of which hospital in town. The other is the Ronald McDonald Family Room here on the 10th floor of Shands. The room is a comfortable place for families to relax and have a snack or catch some rest without having to leave the hospital.
There is no charge for using the Ronald McDonald facilities, but they do ask for a $10 donation for each night a family stays at the house - though the true cost of their operation is much higher. Sadly, even this small amount is beyond the means of some families. We wanted to find some way to help these families.
This month Ronald McDonald House of North Central Florida is celebrating their 28th anniversary. As part of that celebration, we are helping them start a new room sponsorship program called Ginny’s Room.
Ginny’s Room will allow individuals, organizations, or corporations to sponsor a room in the Ronald McDonald House of Gainesville. All room sponsorships will be renewable on a 12 month basis for an annual gift starting at $5,000. The room could be a guest room, kitchen, administrative office, TV Rooms, playroom, living room, laundry room, or the courtyard.
These room sponsorships make a direct impact on the lives of the over 800 families that stay in the House each year by providing the necessary annual income RMHC of NCF needs to cover the approximate $100 a night cost to operate a single guest room.
Sponsorship includes a plaque with your name placed on your sponsored room, recognition in the Ronald McDonald House Charities’ newsletter and on their website, a special keepsake to display in your home or office, and the knowledge that you are helping a child and their family during a very difficult time.
Now, I know that times are tough – and $5,000 is a lot of money. If you are financially blessed enough and moved to do so, please sponsor a room at the Ronald McDonald House of Gainesville. If you are like me and you are motivated to help, but not quite financially able to give $5,000 right now, there is still a way you can help. In order to get Ginny’s Room started, Ronald McDonald House will put Ginny’s name on a room and allow our friends and family to contribute towards that room. Many people over the last month have asked us what they can do to help. As I’ve said before, we are lucky to have good jobs with gr eat benefits and a wonderful support system of friends and family. Here is a chance to help us help others.
A lot of you have already helped us in a lot of different ways and we could not have gotten this far without the prayers and support that all of you have provided. Although we are not home yet, we will be soon enough. Unfortunately another baby will take our place as soon as we leave, and they will need help too. Please help their family by donating a night in Ginny’s Room at the Ronald McDonald House. You can send donations to:
Ronald McDonald House Charities of North Central Florida (RMHCNCF)
1600 SW 14th Street
Gainesville, Florida 32608
or donate with a credit card at www.rmhcncf.org
Please note “Ginny’s Room” somewhere on the check or with the donation. If you have any questions, please contact Rebecca Haggerty-Williams at (352) 374-4404 or info@rmhcncf.org.
Monday, July 5, 2010
Do It Yourself Recovery
Yesterday Ginny had her left atrial line removed and she was weaned off of several medications. Her feeds were increased to 9 cc per hour and she is breathing room air, although through a nasal cannula. Apparently that wasn't enough progress for her. Somehow overnight she managed to work free her right atrial line. The medications that were going through that line were just dumping into her chest cavity and being removed through the chest tubes. I guess she didn't need them that badly. She is recovering nicely. We don't have anything more planned for today other than increasing her feeds by 1 cc every four hours. Tomorrow she should get her swallow study and maybe even have her chest tubes removed. Then we will be closer to having someone take this picture of us:
In case you are wondering, that is a picture of Baby Joseph and his parents Max and Deborah on their way home to Baton Rouge, Louisiana. They were discharged on Friday but didn't make it home until Saturday night. Apparently long road trips don't go as smoothly with a baby in the car. I think they're OK with that.
In case you are wondering, that is a picture of Baby Joseph and his parents Max and Deborah on their way home to Baton Rouge, Louisiana. They were discharged on Friday but didn't make it home until Saturday night. Apparently long road trips don't go as smoothly with a baby in the car. I think they're OK with that.
Saturday, July 3, 2010
Today's Adventure
Ginny was taken off the ventilator and extubated at about 4:30 this afternoon. She is a bit groggy and squirmy, but she is doing great. The next step will be to remove the tube attached to her left atria that was placed to measure her atrial pressure. That should happen some time tomorrow. After that we will remove her right atrial tube, then her chest tubes. After the chest tubes have been removed we'll be able to bring the grandparents in for a visit. We're not exactly sure when that will be, but we're guessing some time around Wednesday of next week.
Tuesday Ginny is scheduled for a bedside swallow study. If everything goes well, she will be feeding by mouth (either bottle or breast) by the end of next week. We appreciate everyone's help and support through this difficult time. A lot of people have asked if there is anything else they can do to help. In the next few days we will be sharing a new program at the Ronald McDonald House called Ginny's Room. Please keep checking back for details. Thanks you again for all your help.
Tuesday Ginny is scheduled for a bedside swallow study. If everything goes well, she will be feeding by mouth (either bottle or breast) by the end of next week. We appreciate everyone's help and support through this difficult time. A lot of people have asked if there is anything else they can do to help. In the next few days we will be sharing a new program at the Ronald McDonald House called Ginny's Room. Please keep checking back for details. Thanks you again for all your help.
Friday, July 2, 2010
Closing Time
Today was a long day of waiting. This morning when we came in Ginny was completely off the nitric oxide. We were told that Ginny's chest would be closed today, but there was a big schedule of procedures for Dr. Bleiweis & Team to accomplish. We were actually the last on the list, and Dr. Bleiweis called at 9:00 pm to let us know she was recovering nicely. We sped back over to the hospital and Ginny is doing great!
They have wired her sternum back together, sewed the muscles together and used Dermabond - a superglue-like substance - on the skin. She is going to have one heck of a nasty scar (at least from the looks of it now), but she has a strong heart, and that's what matters. Tomorrow, she will be extubated and her feeds will start again. If everything goes as planned, we could be home with her in a couple of weeks.
They have wired her sternum back together, sewed the muscles together and used Dermabond - a superglue-like substance - on the skin. She is going to have one heck of a nasty scar (at least from the looks of it now), but she has a strong heart, and that's what matters. Tomorrow, she will be extubated and her feeds will start again. If everything goes as planned, we could be home with her in a couple of weeks.
Thursday, July 1, 2010
Thursday Morning Update
Ginny continued to improve overnight. This morning she was taken off of the pacemaker and her heart rhythm is doing great on its own. She is holding at 50% oxygen through the vent and has been weaned to 8 ppm on the nitric oxide. Her chest tube is draining fluid well and we could see her chest closed as early as tomorrow evening. She still tries to fight against the sedation, so we keep tweaking it. She is doing great. Thanks to everyone for all your prayers.
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