Miss Talia is a cute & sassy CHD warriorette that came in to the world on May 5th, 2009 pink and screaming! She was diagnosed with pulmonary atresia, hypoplastic tricuspid valve and hypoplastic right ventricle while she was in-utero at 20 weeks. At 29 weeks in-utero, we went to Boston to Brigham & Womens Hospital and Boston Children's Hospital and had fetal intervention done to correct the pulmonary valve. She was the 11th baby to have this experimental surgery performed on. They took a needle and went in thru my stomach and in to Talia's tiny chest and opened up her pulmonary valve. The surgery was a success- however- a month later we found out that the bloodflow going thru her pulmonary valve had narrowed- and her diagnosis became pulmonary stenosis. Miss Talia is a brave and strong little girl. She's had 3 heart catheters, a BT shunt operation at 2 weeks old and the Bi-directional Glenn at 4 months. Watch for updates on Talia's life journey!
Updateposted on 01/21/2010
Miss Talia had her appt. with the heart surgeon today and it went well. They did an x-ray it was clear. They checked her oxygen saturations and they are at 99-100 where it should be! Yay! They weighed her and she is now at 16 lbs. 1 oz. so she's finally gained her weight back! She is able to do tummy time now and will start doing physical therapy again next week. Miss Talia has started to hold her own bottle and she is able to touch her feet and pull her socks off. We still have to work on sitting up by herself- but I think she will be doing that in no time! She now likes her exercauser and even though her feet dangle because she's too short- she doesn't seem to mind it!
Talia Updateposted on 01/16/2010
Talia had a pretty good week being back home. She went back to daycare this week and she got to see her friends William, Dillon and Anne that she missed! They missed her as well from what I heard! Dillon asked everyday if he was going to get to see Baby Talia or not. Wednesday morning, Talia had an appointment with her pediatrician for a post-surgery check up. He told us that we need to put an extra scoop of formula in her milk so she can get more calories. Talia also got an x-ray done and she had a bit of fluid in her lungs- but he increased her lasiks to 3 times a day for 2 days and that took care of it. Talia has been in a great mood- she's very happy. She gave us a bit of a scare this week- after Wednesday- she kinda stopped eating as much and we couldn't figure out the problem. I called the cardiologist yesterday and he said it was most likely not heart related since she is in a good mood and shows no other signs or symptoms. Then I called the pediatrician and his recommendation was to take her to the emergency room to check her out. We did not take her to the emergency room- instead- I made a normal bottle for her- without the extra scoop of formula and she drank it like nothing- so the problem was the extra scoop of formula in her milk. It must have been too thick for her or just didn't taste very good. I don't think the ER would have ever figured that out.Talia got to spend Friday nite with her cousin Brian! She had alot of fun watching soccer with him! Next week, talia has a check up with the heart surgeon so I'll have another updated then. Thanks again everybody for all the thoughts and prayers!
Talia Gets to Come Home!posted on 01/09/2010
Miss Talia gets to come home today! Yay! She had an echo yesterday and it looked good. She was feeling alot better yesterday and has started to eat better- she still needs to eat more but she's eating a good amount so she can come home. Grandma & Grandpa Krumbach are up visiting today and its Grandpa's birthday- so this will make his birthday extra special! Talia will be going home on her lasiks to keep the fluid off her heart and also the amioderone which will help with her irregular heart beat. Otherwise- we just have the usual precautions like every other time she's had surgery. She will be able to do tummy time in about 2 weeks.Thanks again for all your thoughts and prayers! They've helped us out so much! We love you all!
Miss Talia had her appt. with the heart surgeon today and it went well. They did an x-ray it was clear. They checked her oxygen saturations and they are at 99-100 where it should be! Yay! They weighed her and she is now at 16 lbs. 1 oz. so she's finally gained her weight back! She is able to do tummy time now and will start doing physical therapy again next week. Miss Talia has started to hold her own bottle and she is able to touch her feet and pull her socks off. We still have to work on sitting up by herself- but I think she will be doing that in no time! She now likes her exercauser and even though her feet dangle because she's too short- she doesn't seem to mind it!
Talia Updateposted on 01/16/2010
Talia had a pretty good week being back home. She went back to daycare this week and she got to see her friends William, Dillon and Anne that she missed! They missed her as well from what I heard! Dillon asked everyday if he was going to get to see Baby Talia or not. Wednesday morning, Talia had an appointment with her pediatrician for a post-surgery check up. He told us that we need to put an extra scoop of formula in her milk so she can get more calories. Talia also got an x-ray done and she had a bit of fluid in her lungs- but he increased her lasiks to 3 times a day for 2 days and that took care of it. Talia has been in a great mood- she's very happy. She gave us a bit of a scare this week- after Wednesday- she kinda stopped eating as much and we couldn't figure out the problem. I called the cardiologist yesterday and he said it was most likely not heart related since she is in a good mood and shows no other signs or symptoms. Then I called the pediatrician and his recommendation was to take her to the emergency room to check her out. We did not take her to the emergency room- instead- I made a normal bottle for her- without the extra scoop of formula and she drank it like nothing- so the problem was the extra scoop of formula in her milk. It must have been too thick for her or just didn't taste very good. I don't think the ER would have ever figured that out.Talia got to spend Friday nite with her cousin Brian! She had alot of fun watching soccer with him! Next week, talia has a check up with the heart surgeon so I'll have another updated then. Thanks again everybody for all the thoughts and prayers!
Talia Gets to Come Home!posted on 01/09/2010
Miss Talia gets to come home today! Yay! She had an echo yesterday and it looked good. She was feeling alot better yesterday and has started to eat better- she still needs to eat more but she's eating a good amount so she can come home. Grandma & Grandpa Krumbach are up visiting today and its Grandpa's birthday- so this will make his birthday extra special! Talia will be going home on her lasiks to keep the fluid off her heart and also the amioderone which will help with her irregular heart beat. Otherwise- we just have the usual precautions like every other time she's had surgery. She will be able to do tummy time in about 2 weeks.Thanks again for all your thoughts and prayers! They've helped us out so much! We love you all!
Talia Updateposted on 01/07/2010
Miss Talia has been in a recovery room for the last 2 days. She is doing ok- she has most of her ivs and lines out. Her irregular heart rate comes and goes and they give her amioderone twice a day orally for that. She is also taking lasiks twice daily as well. She got the ng tube taken out of her nose so she has been eating regularly since she's been up there. She didn't eat very good last nite, so I'm not sure what has caused that, but hopefully she'll start eating more so she can get that double chin back! :) Otherwise- that is all we know for now- we are unsure of when she will get out. Thanks again for all your thoughts and prayers! Also- if you haven't gotten your Miss Talia pendant or keychain yet- here is a link where you can get them online with a paypal account- http://misstalianecklace.tumblr.com/ Otherwise- if you don't have paypal and you want one- just let me know and I can get you one. You can email me at jillkrumbach@yahoo.com Thanks!
Miss Talia Updateposted on 01/05/2010
Miss Talia had a pretty uneventful weekend and she stayed pretty stable. They did an echo on Saturday morning and it didn't change at all. The Lunds had Christmas on Sat. at our house so Miss Talia had quite a few visitors and she got alot of fun gifts she can't wait to play with when she gets home! They did an echo yesterday morning and we had some confusion about it hearing different things from different people- but we got the right information last nite from the heart surgeon and the echo looked good. The bovine valve- tricuspid valve is working! The right side is working! The right atrium is a bit streched and has a bit of high pressure but it is fine where it is at because before she had this operation- the pressure on the right side was twice, if not three times as high. So, as of right now, Miss Talia shouldn't have to have any surgeries for awhile. Her irregular heart rate has returned so they have put her back on the amioderone medicine and that is helping. They said- those could go away at anytime and should they stay- they shouldn't last more then 6 to 12 months and she would take medicine at home for that. It has taken her longer to recover since her body has to get use to the right side of her heart doing more work. And, when she had the partial glenn- the blood flowed more towards her head and now the blood flow is the opposite direction, so her body also had to get use to that. Last nite, Miss Talia was smiling and eating better. I just talked to the nurse to see how she was thru the night and she did good and they are going to take out a couple of her IVs today and possibly send her up to a recovery room. Yay!
Talia's Heart Updateposted on 01/01/2010
An echo was done this morning and the tricuspid valve actually looked much better then it did yesterday. So, they are just going to wait a few days and see how the valve does. If it stays the same- she should be good for awhile. The valve is leaking a bit- but it is working just enough for the right side to do what it is suppose to. The valve will eventually need to be replaced- they are just not sure when. They got a mechanical valve flown in from St. Jude to use as a backup if needed. But, the goal for now is to just get her better and to get her home. As for the valve- we just pray that it works as long as possible! Talia is doing good though- she's been eating and sleeping.
Talia's Heart Updateposted on 12/31/2009
Talia is doing good and we thought she was going to be able to be in a recovery room tomorrow, but it doesn't look that way. The heart surgeon talked to Brent and he said that the bovine valve he put in to replace her tricuspid valve isn't going to work and it will need to be replaced in the next couple of days. We meet with him tomorrow morning to hear his options for the valve. So, Miss Talia is going to have to be opened up once again. Please keep her in your thoughts and prayers! I will let you know more after we know more tomorrow. Otherwise- Miss Talia is in a good mood today and is eating formula.
Miss Talia has been in a recovery room for the last 2 days. She is doing ok- she has most of her ivs and lines out. Her irregular heart rate comes and goes and they give her amioderone twice a day orally for that. She is also taking lasiks twice daily as well. She got the ng tube taken out of her nose so she has been eating regularly since she's been up there. She didn't eat very good last nite, so I'm not sure what has caused that, but hopefully she'll start eating more so she can get that double chin back! :) Otherwise- that is all we know for now- we are unsure of when she will get out. Thanks again for all your thoughts and prayers! Also- if you haven't gotten your Miss Talia pendant or keychain yet- here is a link where you can get them online with a paypal account- http://misstalianecklace.tumblr.com/ Otherwise- if you don't have paypal and you want one- just let me know and I can get you one. You can email me at jillkrumbach@yahoo.com Thanks!
Miss Talia Updateposted on 01/05/2010
Miss Talia had a pretty uneventful weekend and she stayed pretty stable. They did an echo on Saturday morning and it didn't change at all. The Lunds had Christmas on Sat. at our house so Miss Talia had quite a few visitors and she got alot of fun gifts she can't wait to play with when she gets home! They did an echo yesterday morning and we had some confusion about it hearing different things from different people- but we got the right information last nite from the heart surgeon and the echo looked good. The bovine valve- tricuspid valve is working! The right side is working! The right atrium is a bit streched and has a bit of high pressure but it is fine where it is at because before she had this operation- the pressure on the right side was twice, if not three times as high. So, as of right now, Miss Talia shouldn't have to have any surgeries for awhile. Her irregular heart rate has returned so they have put her back on the amioderone medicine and that is helping. They said- those could go away at anytime and should they stay- they shouldn't last more then 6 to 12 months and she would take medicine at home for that. It has taken her longer to recover since her body has to get use to the right side of her heart doing more work. And, when she had the partial glenn- the blood flowed more towards her head and now the blood flow is the opposite direction, so her body also had to get use to that. Last nite, Miss Talia was smiling and eating better. I just talked to the nurse to see how she was thru the night and she did good and they are going to take out a couple of her IVs today and possibly send her up to a recovery room. Yay!
Talia's Heart Updateposted on 01/01/2010
An echo was done this morning and the tricuspid valve actually looked much better then it did yesterday. So, they are just going to wait a few days and see how the valve does. If it stays the same- she should be good for awhile. The valve is leaking a bit- but it is working just enough for the right side to do what it is suppose to. The valve will eventually need to be replaced- they are just not sure when. They got a mechanical valve flown in from St. Jude to use as a backup if needed. But, the goal for now is to just get her better and to get her home. As for the valve- we just pray that it works as long as possible! Talia is doing good though- she's been eating and sleeping.
Talia's Heart Updateposted on 12/31/2009
Talia is doing good and we thought she was going to be able to be in a recovery room tomorrow, but it doesn't look that way. The heart surgeon talked to Brent and he said that the bovine valve he put in to replace her tricuspid valve isn't going to work and it will need to be replaced in the next couple of days. We meet with him tomorrow morning to hear his options for the valve. So, Miss Talia is going to have to be opened up once again. Please keep her in your thoughts and prayers! I will let you know more after we know more tomorrow. Otherwise- Miss Talia is in a good mood today and is eating formula.
Talia Updateposted on 12/30/2009
Talia is doing good today. She got the breathing mask taken off this morning. She has woke up a couple times and wasn't the happiest- but thats to be expected. The nurse said she should possibly get her ivs removed tomorrow and she will either be moved up to a recovery room tomorrow nite or Friday. Otherwise- we're just hanging out for now- nothing else is new for now.
Talia is doing good today. She got the breathing mask taken off this morning. She has woke up a couple times and wasn't the happiest- but thats to be expected. The nurse said she should possibly get her ivs removed tomorrow and she will either be moved up to a recovery room tomorrow nite or Friday. Otherwise- we're just hanging out for now- nothing else is new for now.
Talia Updateposted on 12/29/2009
Miss Talia is doing good today. She still has a mask on to help with her breathing since she still needs to get some fluid off of her. She will be put on a lasiks drip so she can pee some of the fluid off- so hopefully we can get rid of the mask tomorrow.She also had an echo done today and her heart looks good.Also- we got the results from Talia's EEG test from a week ago Monday and everything was normal- so no seizures. Yay! Thanks again for all your thoughts and prayers!
Talia Updateposted on 12/28/2009
Miss Talia got off the vent this morning and is awake. She is on some oxygen and has alot of snot from her cold that they are trying to get rid of. Her lactates and blood gases are ok- the aren't great, but they aren't horrible. So right now- we are just sitting tight. She is doing well otherwise. I'll let you know how she's doing later. Thank you for all the thoughts and prayers- they are working, but keep them coming!
Talia Updateposted on 12/27/2009
Miss Talia gave us a little scare about 8:00 p.m.- her lactates started to go up and they couldn't figure out what was wrong since she looked great. They did a chest x-ray and an echo and they found there was some blood around her heart- starting to clot up a little bit. So, they opened her back up and got the blood clots out and she is doing good again.
Miss Talia is doing good today. She still has a mask on to help with her breathing since she still needs to get some fluid off of her. She will be put on a lasiks drip so she can pee some of the fluid off- so hopefully we can get rid of the mask tomorrow.She also had an echo done today and her heart looks good.Also- we got the results from Talia's EEG test from a week ago Monday and everything was normal- so no seizures. Yay! Thanks again for all your thoughts and prayers!
Talia Updateposted on 12/28/2009
Miss Talia got off the vent this morning and is awake. She is on some oxygen and has alot of snot from her cold that they are trying to get rid of. Her lactates and blood gases are ok- the aren't great, but they aren't horrible. So right now- we are just sitting tight. She is doing well otherwise. I'll let you know how she's doing later. Thank you for all the thoughts and prayers- they are working, but keep them coming!
Talia Updateposted on 12/27/2009
Miss Talia gave us a little scare about 8:00 p.m.- her lactates started to go up and they couldn't figure out what was wrong since she looked great. They did a chest x-ray and an echo and they found there was some blood around her heart- starting to clot up a little bit. So, they opened her back up and got the blood clots out and she is doing good again.
Operation was a success! posted on 12/27/2009
Miss Talia just got out of surgery and it went well! It was a long wait- but well worth it! They were able to replace the tricuspid valve with a bovine valve. They also replaced the pulmonary valve which is also a bovine valve from last time since it had a bit of leakage. When he took her off of bypass he noticed that the pressure in the upper part of her body was too high. So to counteract that he undid the partial glenn that he did last time and it worked!! The right side is now working and she will be able to have a full heart now. Thank you for all your thoughts and prayers!
Talia's Surgery is TODAY!posted on 12/27/2009
Yesterday- Miss Talia got the medicine she needed to get her heart beat regular again. Last nite the heart surgeon decided that he didn't want to wait til Monday to do surgery so she is in surgery right as I type now. We decided to do the tricuspid valve replacement and give the right side of her heart one more shot. Please keep her in your thoughts and prayers! I'll update you later once she's out of surgery.
Talia's 1st Christmas- Not So Fun! :(posted on 12/26/2009
Miss Talia didn't have a very good first Christmas. We left Omaha Wed. nite to get back to Shelby to Grandma & Grandpa Krumbach's house to beat the snowstorm. Christmas eve- Miss Talia was kind of fussy and was uncomfortable from her enlarged liver- so she didn't want to sit up much. She got lots of great presents- some toys, books, clothes, booties, jewelry and jewelry box. Christmas morning she wasn't any better and she was breathing hard, her stomach was as hard as a rock, she didn't want to really eat, and she had a bad cough and stuffy nose. We left around noon to get back to Omaha to take her to the hospital. Miss Talia got admitted and she is doing better. They did an xray last nite and she had some fluid built up around her right lung. They gave her some lasiks and that helped alot. Her xray this morning was alot clearer. They also did an echo last nite and her right atrium looked bigger then it did the previous week. They noticed today she had an irregular heart rate so they did an EKG to confirm it. They found she has an irregular heart rate called atrial tachycardia. The cardiologist said it can be corrected with medicine called amiodarone. So, we got moved from our room on the 5th floor down to the PICU so she can be monitored while she is on this medicine. She's doing fine and does not need intensive care but they just want to make sure she doesn't have any reactions to the medication. That is our plan for today and we are still waiting to see if we will have surgery next week or not since Miss Talia has a bad cough and runny nose- it might get postponed. We'll keep you updated on how she is. Thanks for all the thoughts and prayers! Hope everyone had a Merry Christmas!
Miss Talia just got out of surgery and it went well! It was a long wait- but well worth it! They were able to replace the tricuspid valve with a bovine valve. They also replaced the pulmonary valve which is also a bovine valve from last time since it had a bit of leakage. When he took her off of bypass he noticed that the pressure in the upper part of her body was too high. So to counteract that he undid the partial glenn that he did last time and it worked!! The right side is now working and she will be able to have a full heart now. Thank you for all your thoughts and prayers!
Talia's Surgery is TODAY!posted on 12/27/2009
Yesterday- Miss Talia got the medicine she needed to get her heart beat regular again. Last nite the heart surgeon decided that he didn't want to wait til Monday to do surgery so she is in surgery right as I type now. We decided to do the tricuspid valve replacement and give the right side of her heart one more shot. Please keep her in your thoughts and prayers! I'll update you later once she's out of surgery.
Talia's 1st Christmas- Not So Fun! :(posted on 12/26/2009
Miss Talia didn't have a very good first Christmas. We left Omaha Wed. nite to get back to Shelby to Grandma & Grandpa Krumbach's house to beat the snowstorm. Christmas eve- Miss Talia was kind of fussy and was uncomfortable from her enlarged liver- so she didn't want to sit up much. She got lots of great presents- some toys, books, clothes, booties, jewelry and jewelry box. Christmas morning she wasn't any better and she was breathing hard, her stomach was as hard as a rock, she didn't want to really eat, and she had a bad cough and stuffy nose. We left around noon to get back to Omaha to take her to the hospital. Miss Talia got admitted and she is doing better. They did an xray last nite and she had some fluid built up around her right lung. They gave her some lasiks and that helped alot. Her xray this morning was alot clearer. They also did an echo last nite and her right atrium looked bigger then it did the previous week. They noticed today she had an irregular heart rate so they did an EKG to confirm it. They found she has an irregular heart rate called atrial tachycardia. The cardiologist said it can be corrected with medicine called amiodarone. So, we got moved from our room on the 5th floor down to the PICU so she can be monitored while she is on this medicine. She's doing fine and does not need intensive care but they just want to make sure she doesn't have any reactions to the medication. That is our plan for today and we are still waiting to see if we will have surgery next week or not since Miss Talia has a bad cough and runny nose- it might get postponed. We'll keep you updated on how she is. Thanks for all the thoughts and prayers! Hope everyone had a Merry Christmas!
Thanks again mom and for letting me share your daughter's story!
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