Taylor has had a very good week thus far. Her follow up with the pulmonologist went very well and he doesn't need to see her again until late May unless she gets a bad cold or we have a concern. Yea! She has also it the 11 pound mark - finally. She is gaining almost an ounce an day, which we are thrilled about. Still only about 10th percentile for weight but gaining well. :)
We are in the process of interviewing child care candidates to take care of her in our home from now until June. We have been blessed by referrals from friends and our church and are very hopeful we will have someone special to take care of her very soon. I plan to be back to work full time starting the week of April 13.
Thank you to the Franklin Glen community and mom's co-op for taking care of meals for us twice a week. We are so appreciative! Thank you also to the Oak Hill PTA for the gift of meals from Dinner Done. We are very well taken care of!!!
Please continue to keep all of us in your prayers and especially for Taylor's continued health and growth.
Thursday, March 26, 2009
Friday, March 20, 2009
March 20, 2009 Update
Hi all,
We went to see a Pulmonologist (lung specialist) yesterday. Taylor has had some funny breathing habits since before the surgery that turned out to be a result of her very enlarged pulmonary artery pressing on her airway. As a result, her airway is a little "floppy" or as the Dr. described it yesterday - it is like a trash can with one of those lids that opens and closes with a foot pedal. Hers isn't always closed when it needs to be like when she is feeding and so she sometimes aspirates her formula. This causes her to sound really congested and to cough at times to try to clear it. The floppiness also causes the trachea to collapse somewhat when she is on her back. When she is relaxed and happy, this is not a problem. But when she is agitated or crying it can cause her significant difficulty.
So...first he wanted to send us to the hospital to have her monitored. Jason and I were not pleased with this option knowing that nothing would be resolved before Monday and we would be in hospital limbo again having to farm out Cam and Em and not sleeping. Instead our doctors all consulted (cardiologist, pulmonologist and pediatrician) and decided that if we could watch Taylor's breathing patterns here at home, especially when she is sleeping, to determine if her Oxygen saturation is staying where it needs to (80-89) and work hard to keep her very calm we could have her at home. We are going to be supplied with a pulse-ox machine to monitor her heart rate and SATs(oxygen saturation) as well as bottled oxygen for if she seems to experience distress and doesn't come out of it for several minutes. This can definitely be avoided by not letting her cry for too long or get really upset. When she does get angry she turns a lovely shade of purple. Jason and I have gotten used to it, but it is not something the doctors want her to experience often.
I had this little monkey so well "trained" before surgery - putting herself to sleep and sleeping through the night - just like the other two. Since we came home from the hospital we have been trying to get her back into her routine but she is a different kid now! At the moment she HATES being put down to sleep in her crib. Even if she is fast asleep in our arms or a bouncy seat, etc. and you move her to the crib, within 5 minutes she is wailing! Not fun, especially in the middle of the night. Jason and I spent two hours trying to lull her to sleep the other night. This is not conducive to working during the day or spending quality time with Cameron and Emileigh. Wednesday night we moved the swing to our room and let her sleep in it out of desperation and she slept really well!!! When I explained this to the doctor and asked if I should be letting her "cry it out" he gave us permission to let her sleep wherever she is most comfortable - swing, carseat, crib - and to keep her happy! So that is what we are doing. She had a great night last night and is a much happier kiddo today - and we all slept.
We also are now using a thickener for her formula which should help her to avoid inhaling it as she gulps it down. We are already seeing positive results and are looking forward to our follow up appointment Tuesday.
This weekend we are going to go an buy a newer, quiter swing for her and let Cam and Em help pick it out. So much for following the "rules" for an infant. We have learned quickly with Taylor that she makes her own rules!!! :) We can live with that as long as it keeps her healthy.
Here's hoping for a restful weekend... Thank you for the continued prayers!!!
We went to see a Pulmonologist (lung specialist) yesterday. Taylor has had some funny breathing habits since before the surgery that turned out to be a result of her very enlarged pulmonary artery pressing on her airway. As a result, her airway is a little "floppy" or as the Dr. described it yesterday - it is like a trash can with one of those lids that opens and closes with a foot pedal. Hers isn't always closed when it needs to be like when she is feeding and so she sometimes aspirates her formula. This causes her to sound really congested and to cough at times to try to clear it. The floppiness also causes the trachea to collapse somewhat when she is on her back. When she is relaxed and happy, this is not a problem. But when she is agitated or crying it can cause her significant difficulty.
So...first he wanted to send us to the hospital to have her monitored. Jason and I were not pleased with this option knowing that nothing would be resolved before Monday and we would be in hospital limbo again having to farm out Cam and Em and not sleeping. Instead our doctors all consulted (cardiologist, pulmonologist and pediatrician) and decided that if we could watch Taylor's breathing patterns here at home, especially when she is sleeping, to determine if her Oxygen saturation is staying where it needs to (80-89) and work hard to keep her very calm we could have her at home. We are going to be supplied with a pulse-ox machine to monitor her heart rate and SATs(oxygen saturation) as well as bottled oxygen for if she seems to experience distress and doesn't come out of it for several minutes. This can definitely be avoided by not letting her cry for too long or get really upset. When she does get angry she turns a lovely shade of purple. Jason and I have gotten used to it, but it is not something the doctors want her to experience often.
I had this little monkey so well "trained" before surgery - putting herself to sleep and sleeping through the night - just like the other two. Since we came home from the hospital we have been trying to get her back into her routine but she is a different kid now! At the moment she HATES being put down to sleep in her crib. Even if she is fast asleep in our arms or a bouncy seat, etc. and you move her to the crib, within 5 minutes she is wailing! Not fun, especially in the middle of the night. Jason and I spent two hours trying to lull her to sleep the other night. This is not conducive to working during the day or spending quality time with Cameron and Emileigh. Wednesday night we moved the swing to our room and let her sleep in it out of desperation and she slept really well!!! When I explained this to the doctor and asked if I should be letting her "cry it out" he gave us permission to let her sleep wherever she is most comfortable - swing, carseat, crib - and to keep her happy! So that is what we are doing. She had a great night last night and is a much happier kiddo today - and we all slept.
We also are now using a thickener for her formula which should help her to avoid inhaling it as she gulps it down. We are already seeing positive results and are looking forward to our follow up appointment Tuesday.
This weekend we are going to go an buy a newer, quiter swing for her and let Cam and Em help pick it out. So much for following the "rules" for an infant. We have learned quickly with Taylor that she makes her own rules!!! :) We can live with that as long as it keeps her healthy.
Here's hoping for a restful weekend... Thank you for the continued prayers!!!
Tuesday, March 17, 2009
March 17, 2009
Happy St. Patty's Day!
Many people have emailed in the last few days asking how Taylor has been doing at home and how the whole family is adjusting. No news is good news...but I thought I'd post an update as well.
Overall things are going very well. We are still not getting much sleep because Taylor eats about half of what she did at each feeding prior to surgery, and much more often (including at night). She seems to be feeling better and better each day which is very promising. She had good check-ups with both her regular pediatrician and the cardiologist this week. The cardiologist felt that the first surgery was successful and that everything was just where it should be and on track for the second surgery in June/July. He referred us to a pulminologist to keep closer tabs on her airway recovery as well. We should have that appointment in the next few weeks.
We are looking forward to the end of cold/flu season with the approach of spring and the opportunity to get her outside. We will have to be very careful about being around large groups of people/kids and anyone who is sick as she will continue to be very susceptible to illness, but we won't have to live in a "bubble" of being home as the warm weather approaches.
Cameron and Emileigh seem to be doing OK, though Cam has been a bit more quiet and irritable lately. We are trying very hard to spend as much time with them as we can and also return to "normal" interaction for them with their baby sister. Since they both have had stuffed noses and coughs over the last week the return to normal interaction hasn't been as swift as any of us would like.
We continue to appreciate the calls, cards and offers of meals and help. We are learning very quickly, especially as tired as we are, to say yes to these offers. Thank you!!!
Please keep Taylor and our whole family on your prayer lists. Please pray for continued progress for Taylor, as well as patience, strength and sleep for the rest of us.
Many people have emailed in the last few days asking how Taylor has been doing at home and how the whole family is adjusting. No news is good news...but I thought I'd post an update as well.
Overall things are going very well. We are still not getting much sleep because Taylor eats about half of what she did at each feeding prior to surgery, and much more often (including at night). She seems to be feeling better and better each day which is very promising. She had good check-ups with both her regular pediatrician and the cardiologist this week. The cardiologist felt that the first surgery was successful and that everything was just where it should be and on track for the second surgery in June/July. He referred us to a pulminologist to keep closer tabs on her airway recovery as well. We should have that appointment in the next few weeks.
We are looking forward to the end of cold/flu season with the approach of spring and the opportunity to get her outside. We will have to be very careful about being around large groups of people/kids and anyone who is sick as she will continue to be very susceptible to illness, but we won't have to live in a "bubble" of being home as the warm weather approaches.
Cameron and Emileigh seem to be doing OK, though Cam has been a bit more quiet and irritable lately. We are trying very hard to spend as much time with them as we can and also return to "normal" interaction for them with their baby sister. Since they both have had stuffed noses and coughs over the last week the return to normal interaction hasn't been as swift as any of us would like.
We continue to appreciate the calls, cards and offers of meals and help. We are learning very quickly, especially as tired as we are, to say yes to these offers. Thank you!!!
Please keep Taylor and our whole family on your prayer lists. Please pray for continued progress for Taylor, as well as patience, strength and sleep for the rest of us.
Sunday, March 8, 2009
Hurray, she's home!!!
Taylor was released from the hospital this morning - March 8. She moved out of the PICU Friday evening and Jason stayed with her all through the weekend. He was determined to make sure she was taking all of her feeds by bottle so we could be released. He was succussful!!! Her cardiologist and surgeon saw her today and said it was time to go!!! Wow!!! I had no idea until I arrived at Fairfax this morning after church with Cam and Em in tow and all my stuff to stay tonight and on into the week if needed. Jason surprised us with the thrilling news. He is now going to get some well-deserved and needed rest.
We have a follow up appointment with her pediatrician and cardiologist later this week. Our main job now is to make sure she eats well, gains weight, and stays healthy!!! The doctors are planning to schedule surgery #2 for the end of June.
Again, many thanks for your continued prayers and support. Please keep Taylor and our family in your prayers as we move on to the next phase of this process. Emileigh was singing "It is a great day to serve the Lord" on our way home from the hospital this afternoon. I told her that I couldn't agree more!. God has truly worked in our lives over the past two weeks and I know he will continue to hold Taylor in his hands.
Love to all of you and your families.
We have a follow up appointment with her pediatrician and cardiologist later this week. Our main job now is to make sure she eats well, gains weight, and stays healthy!!! The doctors are planning to schedule surgery #2 for the end of June.
Again, many thanks for your continued prayers and support. Please keep Taylor and our family in your prayers as we move on to the next phase of this process. Emileigh was singing "It is a great day to serve the Lord" on our way home from the hospital this afternoon. I told her that I couldn't agree more!. God has truly worked in our lives over the past two weeks and I know he will continue to hold Taylor in his hands.
Love to all of you and your families.
Friday, March 6, 2009
Friday March 6 Update
Taylor continues to make good progress. Today she took almost a 3 oz bottle from Jason! That is a giant step in the right direction!!! She has to get back up to 24 oz in 24 hours by mouth. Anything that she doesn't finish right now will be added to her feeding tube over the next several days.
Cameron and Emileigh ask daily how Tay is doing and when they can come visit again. We hope to have them here this weekend and be moving closer to the door next week!!!
Jason is going to stay at the hospital tonight so that I can sleep at home. Not much sleep happened in the PICU last night. Taylor slept, but not me!!! We hope to be moved to the regular pediatric floor later today where it is a bit quieter.
Thanks for the yummy food that keeps coming our way, as well as visits from friends at the hospital. We really appreciate all you continue to do for our family.
Please keep praying for all of the wonderful kids here in the PICU and also for Taylor's healthy return home soon.
Love to all...
Cameron and Emileigh ask daily how Tay is doing and when they can come visit again. We hope to have them here this weekend and be moving closer to the door next week!!!
Jason is going to stay at the hospital tonight so that I can sleep at home. Not much sleep happened in the PICU last night. Taylor slept, but not me!!! We hope to be moved to the regular pediatric floor later today where it is a bit quieter.
Thanks for the yummy food that keeps coming our way, as well as visits from friends at the hospital. We really appreciate all you continue to do for our family.
Please keep praying for all of the wonderful kids here in the PICU and also for Taylor's healthy return home soon.
Love to all...
Wednesday, March 4, 2009
March 4, 2009
Today Taylor is five days post-surgery and she is looking and acting more like the baby we took to the hospital last Monday. Today her central line was removed and the pressure on her nasal was turned all the way down to 1. Yippee. Since she is breathing room oxygen, the doctors are planning to remove the nasal canula either tonight or in the morning.
Taylor was also evaluated by the OT, PT and speach therapist today. This is all typical for "cardiac kids". I cannot express how impressed I am with the level of care and communication that the Pediatric Cardiac team at Fairfax provides. The care is amazingly comprehensive. The physical and occupational therapists were happy with Taylor's responsiveness and motor skills for her age and condition. They will work with us until she is discharged and will follow her if she demonstrates any delays. Many kids with surgery like hers show some delays in meeting milestones due to the trauma of surgery, recovery time, bed time, etc. The early intervention here is amazing!!!
The speech therapist evaluated Taylor's sucking, swallowing and observed her bottle feeding this afternoon. She is being allowed to slowly return to the the bottle. I have never seen Taylor suck down an ounce of formula so fast!!! I think by Friday she will be off the feeding tube and totally on the bottle if she continues to respond as well as she did today.
All of these evaluations are necessary before Taylor "graduates" out of the PICU. I like how the doctors are taking it slow with weaning her off the breathing support just to be on the safe side. They are very happy with her progress and how her heart and lungs are performing. Yay!!!
Cameron and Emileigh visited Taylor today as well. After meeting with the Child Life Specialist who showed them pictures of the PICU and talked about all that they would see, they were very excited to see and touch her. Emileigh even drew several pictures for Taylor's room that are now taped to her crib. Our good friend Dave Gillum also stopped in to see us today. Thank you for taking the time to come by.
I have met several other families of kids in the PICU. Two have really stood out - one little girl (a week old) has had the same surgery as Taylor but doesn't seem to be responding as quickly. I talked to another mom today whose 15 day old son now needs a heart transplant. Please add these families to your prayers as you continue to pray for Taylor's recovery.
Thank you to the Brennan family for providing dinner for us this evening and for the wonderful get well gifts for Taylor. We are truly grateful for our friends and neighbors in the Franklin Glen community who are taking care of meals for us, letting Belle out, providing parking passes and meal cards for the hospital. Thank you all!!!
I hope to post some pictures later this week so you can see Taylor's progress.
Taylor was also evaluated by the OT, PT and speach therapist today. This is all typical for "cardiac kids". I cannot express how impressed I am with the level of care and communication that the Pediatric Cardiac team at Fairfax provides. The care is amazingly comprehensive. The physical and occupational therapists were happy with Taylor's responsiveness and motor skills for her age and condition. They will work with us until she is discharged and will follow her if she demonstrates any delays. Many kids with surgery like hers show some delays in meeting milestones due to the trauma of surgery, recovery time, bed time, etc. The early intervention here is amazing!!!
The speech therapist evaluated Taylor's sucking, swallowing and observed her bottle feeding this afternoon. She is being allowed to slowly return to the the bottle. I have never seen Taylor suck down an ounce of formula so fast!!! I think by Friday she will be off the feeding tube and totally on the bottle if she continues to respond as well as she did today.
All of these evaluations are necessary before Taylor "graduates" out of the PICU. I like how the doctors are taking it slow with weaning her off the breathing support just to be on the safe side. They are very happy with her progress and how her heart and lungs are performing. Yay!!!
Cameron and Emileigh visited Taylor today as well. After meeting with the Child Life Specialist who showed them pictures of the PICU and talked about all that they would see, they were very excited to see and touch her. Emileigh even drew several pictures for Taylor's room that are now taped to her crib. Our good friend Dave Gillum also stopped in to see us today. Thank you for taking the time to come by.
I have met several other families of kids in the PICU. Two have really stood out - one little girl (a week old) has had the same surgery as Taylor but doesn't seem to be responding as quickly. I talked to another mom today whose 15 day old son now needs a heart transplant. Please add these families to your prayers as you continue to pray for Taylor's recovery.
Thank you to the Brennan family for providing dinner for us this evening and for the wonderful get well gifts for Taylor. We are truly grateful for our friends and neighbors in the Franklin Glen community who are taking care of meals for us, letting Belle out, providing parking passes and meal cards for the hospital. Thank you all!!!
I hope to post some pictures later this week so you can see Taylor's progress.
Tuesday, March 3, 2009
March 3 - Good Day
Taylor had a good day today. She started to de-accessorize as the nurses call it. Her arterial line came out, she is now off the CPAP and on to a high humidity nasal cannula. We could actually see her little face again. Two of her IV lines were taken out as well and she is off all sedation and pain meds. She had a little Tylenol with Codeine earlier this evening to help her relax because even though she is receiving formula through a feeding tube, her tummy doesn't feel full and she keeps looking for a bottle. The hope is that once the pressure in her nasal is reduced a bit more, she can start bottle feeding again. We are hoping that will happen tomorrow.
I was with her all day and saw her personality coming back. No smiles yet...I don't think she trusts anyone who comes near her bedside right now and I don't blame her. She was very alert and active today as well.
The doctors are very pleased with her progress, but are watching her closely as they don't want her to cause any more drama like she did Saturday! We are thrilled with the steady, slow progress.
Thanks to Meghan Lamm who kept all of us fed through the weekend as well as tonight. Loved the Enchiladas!!
Thanks for the continued prayers, emails and cards. Let's keep praying for daily improvement!
I was with her all day and saw her personality coming back. No smiles yet...I don't think she trusts anyone who comes near her bedside right now and I don't blame her. She was very alert and active today as well.
The doctors are very pleased with her progress, but are watching her closely as they don't want her to cause any more drama like she did Saturday! We are thrilled with the steady, slow progress.
Thanks to Meghan Lamm who kept all of us fed through the weekend as well as tonight. Loved the Enchiladas!!
Thanks for the continued prayers, emails and cards. Let's keep praying for daily improvement!
Monday, March 2, 2009
Monday, March 2
This afternoon Taylor's breathing tube was removed and she is currently breathing with the aid of a CPAP device (Constant Positive Air Pressure). The purpose of the CPAP is to maintain the pressure in her airway as she breathes to combat any "floppiness" caused by the previous pressure of the enlarged blood vessels. She was awake and alert and a bit annoyed with all of the various tubes, etc. this afternoon. Tonight the team plans to try to lower the amount of pressure she is receiving to see how she adapts. She is still on a feeding tube and we hope she will get to resume feeds through the tube later tonight as well. Right now they don't want her to get too much air in her tummy while eating and on the CPAP because that could make her stomach upset. She continues to receive IV fluids to keep her belly somewhat full and her hydrated.
Overall a good day of progress. Please keep praying for the healing of her airway as this is the significant hurdle she will need to clear in order to come out of the PICU and eventually home.
We had a delicious meal from the McConnells tonight with plenty of leftovers for lunch at the hospital tomorrow. Cameron and Emileigh enjoyed a fun filled snow day with their best buds, Sam and Grace Hilburger. Thank you!!!
Jason is going to try to go into the office for a few hours tomorrow and I will be with Taylor at Fairfax. I know the kids are hoping for another snow day...
Overall a good day of progress. Please keep praying for the healing of her airway as this is the significant hurdle she will need to clear in order to come out of the PICU and eventually home.
We had a delicious meal from the McConnells tonight with plenty of leftovers for lunch at the hospital tomorrow. Cameron and Emileigh enjoyed a fun filled snow day with their best buds, Sam and Grace Hilburger. Thank you!!!
Jason is going to try to go into the office for a few hours tomorrow and I will be with Taylor at Fairfax. I know the kids are hoping for another snow day...
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