December 1 Update

Thank you for the many emails and prayers sent our way for Taylor.

For those of you who didn't know, she was just briefly hospitalized (about 24 hours) for a nasty respiratory infection. Started as nasal congestion and then quickly overwhelmed her chest. After 2 days of working hard at home with her nebulizers, etc. to try to clear it, we saw her pediatrician and he had her admitted. Once at Fairfax Hospital the team quickly conferred and checked her heart and Glenn function. All looked great. Once they started her on some new meds, she bounced right back to herself and her breathing cleared within 12 hours. Wow! Only a one night stay and well worth it!!!

She came home last night and is doing much, much better. The respiratory infection was not RSV or flu, but bronchiolitis (inflammation of the small airways) and she just couldn’t clear the mucus. The oral steroids and new nebulizers really have done the trick!

However, we never seem to escape the hospital without some unusual complication and this time it was an IV infiltration. Essentially the needle slipped out of her vein when she was sleeping (babies roll around you know!) and all the fluid pumped into her left arm and puffed it up like a balloon.

Once she felt better and was home last evening crawling around, the fluid pooled and formed blisters in her hand and wrist that burst and essentially caused a burn like effect to her skin. Definitely nominate me for the “mother of the year” award. We saw her pediatrician this morning and just have to put an anti-bacterial cream on the wound and keep it covered. No small feat as Taylor figured out how to unwrap the dressing on the car ride home! Anyway, we have to go back Friday afternoon to have the wound checked and watch for infection.

All in all this is just a bump in the road. She is so tough, barely cries when dealing with this kind of crud, and is generally super happy. Every doctor and nurse who saw her (of course they all know her at Fairfax) commented on how strong she looked and her overall development and growth. She now weighs 21 pounds. Emileigh was 23 at her one year check up which for Taylor is just one week away. So much for cardiac babies being small!!!

We look forward to celebrating Taylor's first birthday on December 11. Wishing you all healthy holidays.

Love,
The Goodloes

Taylor Update - October 15, 2009

Wow! It has been a long while since I last posted an update on Taylor. Remember, no news is good news. That being said, we really appreciate all of you checking regularly and checking in with us to see how she is doing. She is doing GREAT!!! Since September 10 we have had four check-up appointments: Taylor's 9 month wellness check, a visit with her pulmonologist, a follow-up with the GI doc and today her cardiology appointment. All good news to report!!!

Taylor continues to make great strides towards developmental milestones. She now weighs 19 pounds, is crawling and talking up a storm (lots of dadas and babas, etc.). At her 6 month early intervention appointment (speech therapy) she had met all but two of her feeding goals almost 6 months ahead of schedule. Her speech development will continue to be monitored through her first birthday and then we will meet again to determine if services will continue.

The pulmonolgist saw Taylor as she was just starting with a cold - which was a good thing. He told us to keep her as healthy as we can through the winter and to keep in touch. We will see him again late in December unless something comes up before then. He feels that her lungs are still developing slowly and she is particularly susceptible to respiratory infections. He prescribed a new nebulizer treatment to use as needed. It worked wonders with her cold and congestion and she quickly cleared up in about a week - just in time for us to head to the Outer Banks with Jason's parents. We had a wonderful time on our first family vacation since Taylor was born.

Other medical updates: Taylor is no longer taking medication for reflux. Her symptoms have abated as she had moved on to solids and grown a bit. We will just use the Prevacid as needed or when she has a cough to protect her airway from getting irritated. :)

Today was the appointment with her cardiologist. No surprises!!! Her SATS were low 80's which is great for her. The Glenn is functioning just as it should and her blood flow and pressures are just what they need to be. Her growth is good and is progressing just as they would like it to. We heard that her next surgery will be when she is about 30 pounds or between the ages of 2 and 3 depending on how she is doing. No limits on activity for her and we don't need to go back till January! We may see her get a bit "bluer" as she starts to be more physically active as then the blood needed in the lower extremities will be greater and more "blue" blood will be returning to the heart. Nothing to be concerned about. She looks pink and great to us now!!!

Thank you, thank you for your support of Inova Fairfax Hospital for Women and Children - Pediatric Cardiology department and my participation in the Star Kid 8K on October 10. Thanks to your generosity we contributed $2000 to the cause and the race itself raised over $40,000!!! Wow. We were so happy to be a part of this event and look forward to it again next year. Special thanks to our friends and neighbors as well as co-workers who ran with me.

Cameron and Emileigh are doing well also. All 3 kids are in the wonderful care of our new nanny Whitney. She is wonderful with the kids and we feel very blessed to have her as a part of our family. We are currently busy with sports (Flag Football, Swimming, Soccer and Dance) and all of the other things that life brings us (work, friends, etc.).

I will send more updates when I have them. Love to all from Taylor and all the Goodloes!

Star Kid 8K Update

One month away from the 8K to benefit INOVA Health System - specifically Fairfax Hospital's Pediatric Cardiology department. Training is going really well and I am getting excited for the run. I have the support of lots of family, friends and colleagues and have formed Team Taylor.

It is not too late to sign up to run or to donate. I am hoping to raise $1500 in honor of Taylor and have a site connected to the cause with more information: http://starkid8k.kintera.org/faf/donorReg/donorPledge.asp?ievent=323606&supId=270461892

Team Taylor would love some additional runners. Sign up, come out and have a great morning on October 10 at George Mason. You can find more information about the race at:

http://www.runwashington.com/news/312/467/Star-Kid-8K-Web-Site.htm

Taylor continues to be healthy, grow and just be a joy in general! I plan to post more info once we get through a round of check-ups later this month starting with her 9 month wellness check. :) Thanks for the continued prayers! We are blessed.

August 10, 2009

Wow! It has been a few weeks since our last post. Taylor continues to do really, really well. She is growing and happy. No doctors visits (cross your fingers) for a while - at least until mid September.

We are in the process of transitioning from our summer babysitter - a wonderful college student named Genevieve - to our new full-time nanny, Whitney, over the next two weeks. Very exciting and a relief to have found such wonderful child care providers for Taylor, and Emileigh as well. Cameron is getting ready for 1st grade. Not quite excited yet, but hopefully that will come.

Taylor had speech therapy the other day and the appointment went well. We also had a physical therapy consult. Both therapists agree that she is making tremendous progress and looks amazing for all that she has been through in past 4 months or so. She is about a month behind in her physical development, but we are not too concerned. She did spend a total of a month in the hospital between the two surgeries with a solid 9 days of that time under heavy sedation. We think she is doing just great and will work with her to help her catch up.

Lately she is all smiles, especially when Cameron and Emileigh are around. We are enjoying her and so happy she is healthy. No big vacation for us this summer. Just many lazy days at the pool and lots of quality time with family and close friends.

So many of you have mentioned that you follow Taylor's blog and and are keeping up with her progress and continue to pray for her and us! THANK YOU!!! We truly believe she is a miracle and continues to thrive due to God's grace.

I am busily getting ready to open the school year but have added a new challenge to my life. I decided about two weeks ago to sign up for the Star Kids 8K on October 10 to benefit the Pediatric Cardiology department at INOVA Fairfax Hospital. I have never run a race this long and am starting to train for it - boy is it tough! Check out this site if you are interested. Star Kid 8K Web Site - Washington DC Running Report
Source: http://www.runwashington.com/

If you want to run with me, sign up and let's go!!! :)

Love to all...

July 26, 2009 - Home for 2 weeks!

Well, Taylor has been home from the hospital for two weeks and we are now 4 weeks out from her surgery. All is well here at home, if a bit hectic! But it would be that way anyway for us. :)

Taylor was released with a feeding tube on July 11, which she promptly pulled out the first night and we did not fight her to put it back in. We have worked hard with her to increase her bottle feeds and she is doing really well. She is also taking solids in small amounts again with her new favs being avocado and hummus! She gained about 6 ounces between doctor's appointments in the last 10 days and is finally over 16 pounds!

Every day she continues to get better. Her personality, vocalizations and almost all of her motor skills are back. She is still struggling to roll over which she could do before surgery, but she is working at it. She is kind of like a turtle stranded on its back when she is in her crib except she gets stuck on her belly and screams till we come get her. She is sleeping well - usually all night or at least until 4 or 5 AM when she gets hungry and then goes back to sleep till around 7.

Jason and I went back to work for part of the week last week and the majority of the week this week. My brother, sister in law and their two kids are coming Thursday and we are looking forward to some time with them this coming weekend.

Overall her follow-up appointments went very well. Pediatrician thought she looked great and doesn't need to see her (unless she's sick) till her 9 month appointment in September. The pulminologist also thought she looked fantastic, especially since he saw her in the hospital on the vent and right when she came off. He is not particularly happy that her SATs hang out in the mid to upper 70s, but is willing to live with that if the cardiologist is happy. We don't have to see him again until late September unless something changes with her breathing. She will remain on her daily nebulizer to keep her airways open and will start an asthma inhaler in August just to protect her airways as much as possible going into the fall allergy and cold season.

We had our follow-up with the cardio on Friday and he was very pleased and actually didn't have much to say - which is a GREAT thing! Her echo looked good and the Glenn is functioning just as the team hoped it would. Her blood pressure is right where it needs to be and she has good profusion. All things that make the heart doctors happy! We talked about her SATs being in the 70s and whether or not that should be a concern and the answer was NO. Basically his opinion is that she was diagnosed late, has had two major surgeries close together which drastically changed her anatomy and her body is tolerating all of the these changes extremely well and she looks fantastic. He expects that she will only get better. That does not mean her SATs will necessarily go up but as her lungs heal and she grows there is hope they will. No cause for concern unless she seems "bluer" or SATs consistenly are lower. If that is the case then we might have to take her in for a Cath to see what is going on or plan for the Fontan a bit early. I think the real telling comment was that he doesn't need to see us for 3 months - the end of October!!! I was shocked and so relieved at the same time. Right now the next surgery is not until she is 2.

The only other tidbit is that her clot seems to still be resolving itself and her left leg is a bit bluer than the right. The blood vessels will eventually work around the clot and it should dissolve. For now Taylor will stay on aspirin every other day and we will schedule an ultrasound on her leg as a follow-up.

Thank you for the continued prayers, calls, cards, emails, meals, gift cards for dinners, offers to babysit and so much more. We have been so blessed!!! Taylor is a mighty little girl and we look forward to seeing you out and about with her very soon!

Taylor is Home!!!

Praise God!!!

Taylor was discharged from the hospital on Saturday, July 11. After a long day of getting set to go - learning how to replace her feeding tube, having a pump delivered, 3 pharmacies to get her meds and nebulizers, we are finally home and all sleeping in our own beds.

Taylor is doing well and making it know that she does not want to deal with a feeding tube. We are working with her to take all of her feeds by bottle as well as oral meds. Many of the medicines she only has to be on this week to finish out. She pulled out her tube again last night and we are not going to replace it at this point unless she gets really behind on eating.

Looking forward to being out and about with Taylor soon as she gets stronger.

Love to all,
The Goodloes

July 109, 2009

Big sigh....

Still here. Taylor continues to struggle with clearing the mucus and congestion out of her upper airway. Adding an additional nebulizer treatment this evening to see if it helps. Everyone has cleared her to go home except the pulminologist. Feeding is still an issue though earlier today she took 6 ounces by bottle in two different feedings. We are trying to do it all by bottle right now to see is she has the stamina to do that. The GI doc wants us to go home on a feeding tube and gradually wean her off as her strength improves. The pulmonologist would prefer to get the tube out to see if that helps Taylor clear everything out. We are trying our best to feed her when she seems up to it. It was an exhausting afternoon for Taylor (and me and Jason), but we will keep on, keeping on.

I was pleased to hear that the orders for all the medical equipment we may need were written and being worked on by Kaiser this afternoon so hopefully there won't be any delay once we are discharged. Lots of meds to give for a few weeks and probably several nurse "weight check" visits. Jason and I will be taught how to put in the tube as well as give Taylor the shot of anti-coag med she will need for a bit longer. All things we can handle if it means getting Taylor home!!!

It is amazing what a change of environment does for her. We have walked her around and taken her to the courtyard on the pediatric floor and she LOVES the stimulation. The therapists have been very happy with how she is progressing physically and that she is starting to smile and play again. We feel that getting her home will only enhance the speed of her recovery.

Hope you enjoy a beautiful weekend! We hope to share very good news about Taylor's homecoming very, very soon. Please pray for that!